An index of the ratio of inflammatory to antiviral cell types mediates the effects of social adversity and age on chronic illness.

PubMed

Simons, Ronald L; Lei, Man-Kit; Beach, Steven R H; Barr, Ashley B; Cutrona, Carolyn E; Gibbons, Frederick X; Philibert, Robert A

2017-07-01

It is assumed that both social stress and chronological age increase the risk of chronic illness, in part, through their effect on systemic inflammation. Unfortunately, observational studies usually employ single-marker measures of inflammation (e.g., Interleukin-6, C-reactive protein) that preclude strong tests for mediational effects. The present study investigated the extent to which the effects of socioeconomic disadvantage and age on onset of chronic illness is mediated by dominance of the innate (inflammatory) over the acquired (antiviral) components of the immune system. We assessed inflammation using the ratio of inflammatory to antiviral cell types (ITACT Ratio). This approach provided a stronger test of evolutionary arguments regarding the effect of social stress on chronic inflammation than is the case with cytokine measures, and afforded an opportunity to replicate findings obtained utilizing mRNA. We used structural equation modeling and longitudinal data from a sample of 100 middle-age African American women to perform our analyses. Dominance of inflammatory over antiviral cell activity was associated with each of the eight illnesses included in our chronic illness measure. Both socioeconomic disadvantage and age were also associated with inflammatory dominance. Pursuant to the central focus of the study, the effects of socioeconomic adversity and age on increased illness were mediated by our measure of inflammatory dominance. The indirect effect of these variables through inflammatory cell profile was significant, with neither socioeconomic disadvantage nor age showing a significant association with illness once the impact of inflammatory cell profile was taken into account. First, the analysis provides preliminary validation of a new measure of inflammation that is calculated based on the ratio of inflammatory to antiviral white blood cells. Second, our results support the hypothesis that socioeconomic disadvantage and chronological age increase risk for chronic illness in part through their effect on inflammatory processes. Copyright © 2017 Elsevier Ltd. All rights reserved.

Chronically ill patients' self-management abilities to maintain overall well-being: what is needed to take the next step in the primary care setting?

PubMed

Cramm, Jane Murray; Nieboer, Anna Petra

2015-09-15

Although widespread problems in patient-professional interaction and insufficient support of patients' self-management abilities have been recognized, research investigating the relationships among care quality, productive interaction, and self-management abilities to maintain overall well-being is lacking. Furthermore, studies have revealed differences in these characteristics among certain groups (e.g., less-educated and older patients). This longitudinal study thus aimed to identify relationships among background characteristics, quality of care, productivity of patient-professional interaction, and self-management abilities to maintain overall well-being in chronically ill patients participating in 18 Dutch disease management programs. This longitudinal study included patients participating in 18 Dutch disease management programs. Surveys were administered in 2011 (T1; n = 2191 (out of 4693), 47 % response rate) and 2012 (T2: n = 1722 (out of 4350), 40 % response rate). A total of 1279 patients completed questionnaires at both timepoints (T1 and T2) (27 % response rate). Self-management abilities to maintain well-being were measured using the short (18-item) version of the Self-Management Ability Scale (SMAS-S), patients' perceptions of the productivity of interactions with health care professionals were assessed with the relational coordination instrument and the short (11-item) version of the Patient Assessment of Chronic Illness Care (PACIC-S) was used to assess patients' perceptions of the quality of chronic care delivery. Perceived and objective quality of care and the productivity of patient-professional interaction were found to be related to patients' self-management abilities to maintain overall well-being. These abilities were related negatively to and significantly predicted by low educational level, single status, and older age, despite the mediating role of productive interaction in their relationship with patients' perceptions of care quality. These findings suggest that patient-professional interaction is not yet sufficiently productive to successfully protect against the deterioration of self-management abilities in some groups of chronically ill patients, although such interaction and high-quality care are important factors in such protection. Improvement of the quality of chronic care delivery should thus always be accompanied by investment in high-quality communication and patient-professional relationships.

Complex adaptive chronic care - typologies of patient journey: a case study.

PubMed

Martin, Carmel M; Grady, Deirdre; Deaconking, Susan; McMahon, Catherine; Zarabzadeh, Atieh; O'Shea, Brendan

2011-06-01

Complex adaptive chronic care (CACC) is a framework based upon complex adaptive systems' theory developed to address different stages in the patient journey in chronic illness. Simple, complicated, complex and chaotic phases are proposed as diagnostic types. To categorize phases of the patient journey and evaluate their utility as diagnostic typologies. A qualitative case study of two cohorts, identified as being at risk of avoidable hospitalization: 12 patients monitored to establish typologies, followed by 46 patients to validate the typologies. Patients were recruited from a general practitioner out-of-hours service. Self-rated health, medical and psychological health, social support, environmental concerns, medication adherence and health service use were monitored with phone calls made 3-5 times per week for an average of 4 weeks. Analysis techniques included frequency distributions, coding and categorization of patients' longitudinal data using a CACC framework. Twelve and 46 patients, mean age 69 years, were monitored for average of 28 days in cohorts 1 and 2 respectively. Cohorts 1 and 2 patient journeys were categorized as being: stable complex 66.66% vs. 67.4%, unstable complex 25% vs. 26.08% and unstable complex chaotic 8.3% vs. 6.52% respectively. An average of 0.48, 0.75 and 2 interventions per person were provided in the stable, unstable and chaotic journeys. Instability was related to complex interactions between illness, social support, environment, as well as medication and medical care issues. Longitudinal patient journeys encompass different phases with characteristic dynamics and are likely to require different interventions and strategies - thus being 'adaptive' to the changing complex dynamics of the patient's illness and care needs. CACC journey types provide a clinical tool for health professionals to focus time and care interventions in response to patterns of instability in multiple domains in chronic illness care. © 2011 Blackwell Publishing Ltd.

Perceived conflict in the couple and chronic illness management: preliminary analyses from the Quebec Health Survey.

PubMed

Soubhi, Hassan; Fortin, Martin; Hudon, Catherine

2006-10-19

The quality of the relationship with the spouse/partner appears crucial among patients with multiple chronic conditions where illness management is complex and multifaceted. This study draws on data from the Quebec Health Survey (QHS) to examine, among patients with one or more chronic conditions, the relation between marital status, the perceived conflict with the spouse/partner, and what the patients do to manage their illness as well as how they perceive their health. Data from the QHS 1998 were used. The sample included 7547 coupled adults who had one or more chronic health problems lasting more than 6 months. Independent variables included marital status, perceived conflict with the spouse/partner, and the number of chronic conditions. Illness management was defined broadly as a measure of the patient's efforts at self-care and an illness status indicator, including visits to the generalist and the specialist, the use of telephone health line in the last 12 months, self-rated general health, mental health, and a measure of psychological distress. Linkages between the independent variables and illness management were assessed for males and females separately with logistic regressions, while accounting for the survey sampling design and household clustering. Female patients who did not live with their partner and had never been married were more likely to report a negative perception of their general health and a higher psychological distress than those who were married. Perceived conflict with the partner was linked to a negative perception of mental health and a higher psychological distress among both men and women. Compared to patients with only one chronic condition, males who reported more than one chronic condition were more likely to have consulted a generalist prior to the survey and used the telephone health line, whereas females were more likely to have consulted a specialist. Both males and females with more than one chronic condition were more likely to have a negative perception of their general health and mental health. The study provides a useful preliminary measure of the importance of living arrangements and the quality of the couple relationship in chronic illness management broadly conceived as a measure of the patient's efforts at self-care and an illness status indicator. Results of this study prod us to examine more closely, within longitudinal designs, the influence of living arrangements and the presence of conflict in the couple on chronic illness management as well as the modifying effect of gender on these associations.

Early-Course Unmedicated Schizophrenia Patients Exhibit Elevated Prefrontal Connectivity Associated with Longitudinal Change

PubMed Central

Anticevic, Alan; Hu, Xinyu; Xiao, Yuan; Hu, Junmei; Li, Fei; Bi, Feng; Cole, Michael W.; Savic, Aleksandar; Yang, Genevieve J.; Repovs, Grega; Murray, John D.; Wang, Xiao-Jing; Huang, Xiaoqi; Lui, Su; Krystal, John H.

2015-01-01

Strong evidence implicates prefrontal cortex (PFC) as a major source of functional impairment in severe mental illness such as schizophrenia. Numerous schizophrenia studies report deficits in PFC structure, activation, and functional connectivity in patients with chronic illness, suggesting that deficient PFC functional connectivity occurs in this disorder. However, the PFC functional connectivity patterns during illness onset and its longitudinal progression remain uncharacterized. Emerging evidence suggests that early-course schizophrenia involves increased PFC glutamate, which might elevate PFC functional connectivity. To test this hypothesis, we examined 129 non-medicated, human subjects diagnosed with early-course schizophrenia and 106 matched healthy human subjects using both whole-brain data-driven and hypothesis-driven PFC analyses of resting-state fMRI. We identified increased PFC connectivity in early-course patients, predictive of symptoms and diagnostic classification, but less evidence for “hypoconnectivity.” At the whole-brain level, we observed “hyperconnectivity” around areas centered on the default system, with modest overlap with PFC-specific effects. The PFC hyperconnectivity normalized for a subset of the sample followed longitudinally (n = 25), which also predicted immediate symptom improvement. Biologically informed computational modeling implicates altered overall connection strength in schizophrenia. The initial hyperconnectivity, which may decrease longitudinally, could have prognostic and therapeutic implications. PMID:25568120

Early-course unmedicated schizophrenia patients exhibit elevated prefrontal connectivity associated with longitudinal change.

PubMed

Anticevic, Alan; Hu, Xinyu; Xiao, Yuan; Hu, Junmei; Li, Fei; Bi, Feng; Cole, Michael W; Savic, Aleksandar; Yang, Genevieve J; Repovs, Grega; Murray, John D; Wang, Xiao-Jing; Huang, Xiaoqi; Lui, Su; Krystal, John H; Gong, Qiyong

2015-01-07

Strong evidence implicates prefrontal cortex (PFC) as a major source of functional impairment in severe mental illness such as schizophrenia. Numerous schizophrenia studies report deficits in PFC structure, activation, and functional connectivity in patients with chronic illness, suggesting that deficient PFC functional connectivity occurs in this disorder. However, the PFC functional connectivity patterns during illness onset and its longitudinal progression remain uncharacterized. Emerging evidence suggests that early-course schizophrenia involves increased PFC glutamate, which might elevate PFC functional connectivity. To test this hypothesis, we examined 129 non-medicated, human subjects diagnosed with early-course schizophrenia and 106 matched healthy human subjects using both whole-brain data-driven and hypothesis-driven PFC analyses of resting-state fMRI. We identified increased PFC connectivity in early-course patients, predictive of symptoms and diagnostic classification, but less evidence for "hypoconnectivity." At the whole-brain level, we observed "hyperconnectivity" around areas centered on the default system, with modest overlap with PFC-specific effects. The PFC hyperconnectivity normalized for a subset of the sample followed longitudinally (n = 25), which also predicted immediate symptom improvement. Biologically informed computational modeling implicates altered overall connection strength in schizophrenia. The initial hyperconnectivity, which may decrease longitudinally, could have prognostic and therapeutic implications. Copyright © 2015 the authors 0270-6474/15/350267-20$15.00/0.

Differences and similarities in the trajectories of self-esteem and positive and negative affect in persons with chronic illness: an explorative longitudinal study

PubMed Central

Bonsaksen, Tore; Lerdal, Anners; Småstuen, Milada Cvancarova; Fagermoen, May Solveig

2016-01-01

Background Chronic illness is a risk factor for low self-esteem, and the research literature needs to include more studies of self-esteem and its development in chronic illness groups using longitudinal and comparative designs. The aim of this study was to explore the trajectories of self-esteem and of positive and negative affect in persons with morbid obesity and in persons with chronic obstructive pulmonary disease (COPD). Methods Patient education course attendants in Norway having morbid obesity (n=139) or COPD (n=97) participated in the study. Data concerning self-esteem, positive and negative affect, and sociodemographic background were collected at the start and at the end of the patient education, with subsequent follow-ups at 3, 6, and 12 months. Data were analyzed using linear mixed models for repeated measures. Results Taking all measurements into account, our data revealed a statistically significant increase in self-esteem for participants with morbid obesity but not for those with COPD. There were no significant differences in levels of negative and positive affect between the two groups, and the time-trajectories were also similar. However, participants in both groups achieved lower levels of negative affect for all the successive measurement points. Conclusion An increase in self-esteem during the first year after the patient education course was observed for persons with morbid obesity, but not for persons with COPD. Initial higher levels of self-esteem in the participants with COPD may indicate that they are less troubled with low self-esteem than people with morbid obesity are. The pattern of reduced negative affect for both groups during follow-up is promising. PMID:27574438

Differences and similarities in the trajectories of self-esteem and positive and negative affect in persons with chronic illness: an explorative longitudinal study.

PubMed

Bonsaksen, Tore; Lerdal, Anners; Småstuen, Milada Cvancarova; Fagermoen, May Solveig

2016-01-01

Chronic illness is a risk factor for low self-esteem, and the research literature needs to include more studies of self-esteem and its development in chronic illness groups using longitudinal and comparative designs. The aim of this study was to explore the trajectories of self-esteem and of positive and negative affect in persons with morbid obesity and in persons with chronic obstructive pulmonary disease (COPD). Patient education course attendants in Norway having morbid obesity (n=139) or COPD (n=97) participated in the study. Data concerning self-esteem, positive and negative affect, and sociodemographic background were collected at the start and at the end of the patient education, with subsequent follow-ups at 3, 6, and 12 months. Data were analyzed using linear mixed models for repeated measures. Taking all measurements into account, our data revealed a statistically significant increase in self-esteem for participants with morbid obesity but not for those with COPD. There were no significant differences in levels of negative and positive affect between the two groups, and the time-trajectories were also similar. However, participants in both groups achieved lower levels of negative affect for all the successive measurement points. An increase in self-esteem during the first year after the patient education course was observed for persons with morbid obesity, but not for persons with COPD. Initial higher levels of self-esteem in the participants with COPD may indicate that they are less troubled with low self-esteem than people with morbid obesity are. The pattern of reduced negative affect for both groups during follow-up is promising.

Chronic stressors and trauma: prospective influences on the course of bipolar disorder

PubMed Central

Gershon, A.; Johnson, S. L.; Miller, I.

2013-01-01

Background Exposure to life stress is known to adversely impact the course of bipolar disorder. Few studies have disentangled the effects of multiple types of stressors on the longitudinal course of bipolar I disorder. This study examines whether severity of chronic stressors and exposure to trauma are prospectively associated with course of illness among bipolar patients. Method One hundred and thirty-one participants diagnosed with bipolar I disorder were recruited through treatment centers, support groups and community advertisements. Severity of chronic stressors and exposure to trauma were assessed at study entry with in-person interviews using the Bedford College Life Event and Difficulty Schedule (LEDS). Course of illness was assessed by monthly interviews conducted over the course of 24 months (over 3000 assessments). Results Trauma exposure was related to more severe interpersonal chronic stressors. Multiple regression models provided evidence that severity of overall chronic stressors predicted depressive but not manic symptoms, accounting for 7.5% of explained variance. Conclusions Overall chronic stressors seem to be an important determinant of depressive symptoms within bipolar disorder, highlighting the importance of studying multiple forms of life stress. PMID:23419615

Chronic stressors and trauma: prospective influences on the course of bipolar disorder.

PubMed

Gershon, A; Johnson, S L; Miller, I

2013-12-01

Exposure to life stress is known to adversely impact the course of bipolar disorder. Few studies have disentangled the effects of multiple types of stressors on the longitudinal course of bipolar I disorder. This study examines whether severity of chronic stressors and exposure to trauma are prospectively associated with course of illness among bipolar patients. One hundred and thirty-one participants diagnosed with bipolar I disorder were recruited through treatment centers, support groups and community advertisements. Severity of chronic stressors and exposure to trauma were assessed at study entry with in-person interviews using the Bedford College Life Event and Difficulty Schedule (LEDS). Course of illness was assessed by monthly interviews conducted over the course of 24 months (over 3000 assessments). Trauma exposure was related to more severe interpersonal chronic stressors. Multiple regression models provided evidence that severity of overall chronic stressors predicted depressive but not manic symptoms, accounting for 7.5% of explained variance. Overall chronic stressors seem to be an important determinant of depressive symptoms within bipolar disorder, highlighting the importance of studying multiple forms of life stress.

Changes in autonomy, job demands and working hours after diagnosis of chronic disease: a comparison of employed and self-employed older persons using the English Longitudinal Study of Ageing (ELSA).

PubMed

Fleischmann, Maria; Carr, Ewan; Xue, Baowen; Zaninotto, Paola; Stansfeld, Stephen A; Stafford, Mai; Head, Jenny

2018-06-23

Modifications in working conditions can accommodate changing needs of chronically ill persons. The self-employed may have more possibilities than employees to modify their working conditions. We investigate how working conditions change following diagnosis of chronic disease for employed and self-employed older persons. We used waves 2-7 from the English Longitudinal Study of Ageing (ELSA). We included 1389 participants aged 50-60 years who reported no chronic disease at baseline. Using fixed-effects linear regression analysis, we investigated how autonomy, physical and psychosocial job demands and working hours changed following diagnosis of chronic disease. For employees, on diagnosis of chronic disease autonomy marginally decreased (-0.10, 95% CI -0.20 to 0.00) and physical job demands significantly increased (0.13, 95% CI 0.01 to 0.25), whereas for the self-employed autonomy did not significantly change and physical job demands decreased on diagnosis of chronic disease (-0.36, 95% CI -0.64 to -0.07), compared with prediagnosis levels. Psychosocial job demands did not change on diagnosis of chronic disease for employees or the self-employed. Working hours did not change for employees, but dropped for self-employed (although non-significantly) by about 2.8 hours on diagnosis of chronic disease (-2.78, 95% CI -6.03 to 0.48). Improvements in working conditions after diagnosis of chronic disease were restricted to the self-employed. This could suggest that workplace adjustments are necessary after diagnosis of chronic disease, but that the self-employed are more likely to realise these. Policy seeking to extend working life should consider work(place) adjustments for chronically ill workers as a means to prevent early exit from work. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Diabetes Stories: Use of Patient Narratives of Diabetes to Teach Patient-Centered Care

ERIC Educational Resources Information Center

Kumagai, Arno K.; Murphy, Elizabeth A.; Ross, Paula T.

2009-01-01

A critical component to instituting compassionate, patient-centered diabetes care is the training of health care providers. Our institution developed the Family Centered Experience (FCE), a comprehensive 2-year preclinical program based on longitudinal conversations with patients about living with chronic illness. The goal of the FCE is to explore…

Rationale, design and methods for a community-based study of clustering and cumulative effects of chronic disease processes and their effects on ageing: the Busselton healthy ageing study

PubMed Central

2013-01-01

Background The global trend of increased life expectancy and increased prevalence of chronic and degenerative diseases will impact on health systems. To identify effective intervention and prevention strategies, greater understanding of the risk factors for and cumulative effects of chronic disease processes and their effects on function and quality of life is needed. The Busselton Healthy Ageing Study aims to enhance understanding of ageing by relating the clustering and interactions of common chronic conditions in adults to function. Longitudinal (3–5 yearly) follow-up is planned. Methods/design Phase I (recruitment) is a cross-sectional community-based prospective cohort study involving up to 4,000 'Baby Boomers’ (born from 1946 to 1964) living in the Busselton Shire, Western Australia. The study protocol involves a detailed, self-administered health and risk factor questionnaire and a range of physical assessments including body composition and bone density measurements, cardiovascular profiling (blood pressure, ECG and brachial pulse wave velocity), retinal photography, tonometry, auto-refraction, spirometry and bronchodilator responsiveness, skin allergy prick tests, sleep apnoea screening, tympanometry and audiometry, grip strength, mobility, balance and leg extensor strength. Cognitive function and reserve, semantic memory, and pre-morbid intelligence are assessed. Participants provide a fasting blood sample for assessment of lipids, blood glucose, C-reactive protein and renal and liver function, and RNA, DNA and serum are stored. Clinically relevant results are provided to all participants. The prevalence of risk factors, symptoms and diagnosed illness will be calculated and the burden of illness will be estimated based on the observed relationships and clustering of symptoms and illness within individuals. Risk factors for combinations of illness will be compared with those for single illnesses and the relation of combinations of illness and symptoms to cognitive and physical function will be estimated. Discussion This study will enable a thorough characterization of multiple disease processes and their risk factors within a community-based sample of individuals to determine their singular, interactive and cumulative effects on ageing. The project will provide novel cross-sectional data and establish a cohort that will be used for longitudinal analyses of the genetic, lifestyle and environmental factors that determine whether an individual ages well or with impairment. PMID:24099269

Changing choices: disabled and chronically ill people's experiences of reconsidering choices.

PubMed

Baxter, Kate

2013-06-01

To increase understanding of disabled and chronically ill people's experiences of revisiting choices by considering events that prompted people to reconsider choices; what factors motivated them to act upon these events and what factors affected their experiences of revisiting choices. A sub-sample of 20 disabled and chronically ill people who took part in a qualitative, longitudinal study exploring choice-making in the context of changing circumstances. Each person was interviewed three times. Analysis focussed on choices that people had been prompted to revisit. Most choices were about health or social care and were revisited within a year due to: changes in health or social circumstances; poorer than expected outcomes; and external interventions. People were motivated to make changes by a desire to maintain independence and control, but perceived short-term costs of decision-making could act as a deterrent. Experiences of revisiting choices were affected by help from other people and emotional strength. Making and revisiting choices is complex; people need support to engage with the continual cycle of choice-making. People who instigate revisions of their own accord may be particularly vulnerable to lack of support.

A longitudinal study to identify the influence of quality of chronic care delivery on productive interactions between patients and (teams of) healthcare professionals within disease management programmes

PubMed Central

Cramm, Jane Murray; Nieboer, Anna Petra

2014-01-01

Objective The chronic care model is an increasingly used approach to improve the quality of care through system changes in care delivery. While theoretically these system changes are expected to increase productive patient–professional interaction empirical evidence is lacking. This study aims to identify the influence of quality of care on productive patient–professional interaction. Setting Longitudinal study in 18 Dutch regions. Participants Questionnaires were sent to all 5076 patients participating in 18 Disease Management Programmes (DMPs) in 2010 (2676 (53%) respondents). One year later (T1), 4693 patients still participating in the DMPs received a questionnaire (2191 (47%) respondents) and 2 years later (in 2012; T2) 1722 patients responded (out of 4350; 40% response). Interventions DMPs Primary outcome measure Patients’ perceptions of the productivity of interactions (measured as relational coordination/coproduction of care) with professionals. Patients were asked about communication dimensions (frequent, accurate, and problem-solving communication) and relationship dimensions (shared goals and mutual respect). Findings After controlling for background characteristics these results clearly show that quality of chronic care (T0), first-year changes in quality of chronic care (T1—T0) and second-year changes in quality of chronic care (T2—T1) predicted productive interactions between patients and professionals at T2 (all at p≤0.001). Furthermore, we found a negative relationship between lower educational level and productive interactions between patients and professionals 2 years later. Conclusions We can conclude that successfully dealing with the consequences of chronic illnesses requires proactive patients who are able to make productive decisions together with their healthcare providers. Since patients and professionals share responsibility for management of the chronic illness, they must also share control of interactions and decisions. The importance of patient-centeredness is growing and this study reports a first example of how quality of chronic care stimulates productive interactions between patients and professionals. PMID:25239294

The Relationship of Chronic Medical Illnesses, Poor Health-Related Lifestyle Choices, and Health Care Utilization to Recovery Status in Borderline Patients over a Decade of Prospective Follow-up

PubMed Central

Keuroghlian, Alex S.; Frankenburg, Frances R.; Zanarini, Mary C.

2013-01-01

Background The interaction of borderline personality disorder (BPD) with physical health has not been well characterized. In this longitudinal study, we investigated the long-term relationship of chronic medical illnesses, health-related lifestyle choices, and health services utilization to recovery status in borderline patients over a decade of prospective follow-up. Method 264 borderline patients were interviewed concerning their physical health at 6-year follow-up in a longitudinal study of the course of BPD. This sample was then reinterviewed five times at two-year intervals over the next ten years. We defined recovery from BPD based on a Global Assessment of Functioning score of 61 or higher, which required BPD remission, one close relationship, and full-time competent and consistent work or school attendance. We controlled for potentially confounding effects of time-varying major depressive disorder. Results Never-recovered borderline patients were significantly more likely than ever-recovered borderline patients to have a medical syndrome, obesity, osteoarthritis, diabetes, urinary incontinence, or multiple medical conditions (p < 0.0063). They were also significantly more likely to report pack-per-day smoking, weekly alcohol use, no regular exercise, daily sleep medication use, or pain medication overuse (p < 0.0083). In addition, never-recovered borderline patients were significantly more likely than ever-recovered borderline patients to undergo a medical emergency room visit, medical hospitalization, X-ray, CT scan, or MRI scan (p < 0.0063). Conclusions Over a decade of prospective follow-up, failure to recover from BPD seems to be associated with a heightened risk of chronic medical illnesses, poor health-related lifestyle choices, and costly health services utilization. PMID:23856083

A Longitudinal Analysis of Stepfamily Relationship Quality and Adolescent Physical Health.

PubMed

Jensen, Todd M; Harris, Kathleen Mullan

2017-10-01

Approximately one third of youth are estimated to live with a biological parent and stepparent before reaching adulthood. Additional research is warranted whereby stepfamily processes are identified that drive variation in youth adjustment, particularly physical health. We examined stepfather-child, mother-child, and stepcouple relationship quality as predictors of levels and changes in adolescent physical health over time. We used a nationally representative sample of 1,233 adolescents living in biological mother-stepfather families from waves I (1994-1995) and II (1996) of the National Longitudinal Study of Adolescent to Adult Health. We incorporated measures of stepfather-child, mother-child, and stepcouple relationship quality, as well as adolescent reports of 10 physical health symptoms at waves I and II. Structural equation modeling was used to examine associations between wave I stepfamily relationships and adolescent physical symptoms at waves I and II. We used a zero-inflated negative binomial model to establish the validity of wave II adolescent physical symptoms as a predictor of an index of diagnosed chronic illnesses by wave IV (ages 26-32 years). Stepfather-child and mother-child relationship quality were negatively correlated with concurrent levels of adolescent physical symptoms. Stepfather-child relationship quality was negatively associated with change in adolescent physical symptoms over time. Adolescents with higher levels of physical symptoms at wave II were more likely to report chronic illnesses by adulthood. Stepfather-child relationship quality is a robust predictor of adolescent physical health throughout adolescence and is linked to chronic illness diagnoses in young adulthood. Future research should explore further the mechanisms that underlie this association. Copyright © 2017 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

Weight restoration therapy rapidly reverses cortical thinning in anorexia nervosa: A longitudinal study.

PubMed

Bernardoni, Fabio; King, Joseph A; Geisler, Daniel; Stein, Elisa; Jaite, Charlotte; Nätsch, Dagmar; Tam, Friederike I; Boehm, Ilka; Seidel, Maria; Roessner, Veit; Ehrlich, Stefan

2016-04-15

Structural magnetic resonance imaging studies have documented reduced gray matter in acutely ill patients with anorexia nervosa to be at least partially reversible following weight restoration. However, few longitudinal studies exist and the underlying mechanisms of these structural changes are elusive. In particular, the relative speed and completeness of brain structure normalization during realimentation remain unknown. Here we report from a structural neuroimaging study including a sample of adolescent/young adult female patients with acute anorexia nervosa (n=47), long-term recovered patients (n=34), and healthy controls (n=75). The majority of acutely ill patients were scanned longitudinally (n=35): at the beginning of standardized weight restoration therapy and again after partial weight normalization (>10% body mass index increase). High-resolution structural images were processed and analyzed with the longitudinal stream of FreeSurfer software to test for changes in cortical thickness and volumes of select subcortical regions of interest. We found globally reduced cortical thickness in acutely ill patients to increase rapidly (0.06 mm/month) during brief weight restoration therapy (≈3 months). This significant increase was predicted by weight restoration alone and could not be ascribed to potentially mediating factors such as duration of illness, hydration status, or symptom improvements. By comparing cortical thickness in partially weight-restored patients with that measured in healthy controls, we confirmed that cortical thickness had normalized already at follow-up. This pattern of thinning in illness and rapid normalization during weight rehabilitation was largely mirrored in subcortical volumes. Together, our findings indicate that structural brain insults inflicted by starvation in anorexia nervosa may be reversed at a rate much faster than previously thought if interventions are successful before the disorder becomes chronic. This provides evidence drawing previously speculated mechanisms such as (de-)hydration and neurogenesis into question and suggests that neuronal and/or glial remodeling including changes in macromolecular content may underlie the gray matter alterations observed in anorexia nervosa. Copyright © 2016 Elsevier Inc. All rights reserved.

Effectiveness of a family-oriented rehabilitation program on the quality of life of parents of chronically ill children.

PubMed

West, C A; Besier, T; Borth-Bruhns, T; Goldbeck, L

2009-01-01

Parents of chronically ill children face numerous burdens in daily life, which can impair their quality of life (QoL) significantly. Therefore in family-oriented rehabilitation, not only the children themselves, but also their parents receive interventions. These aim at stabilizing parents both mentally and physically to enable them to support their children in the best possible way. This study investigates the effects of an inpatient family-oriented rehabilitation program on the QoL of parents of chronically ill children. A consecutive sample of 231 mothers and 155 fathers of children suffering from cancer, cardiac diseases or cystic fibrosis participated in the study. In a prospective longitudinal study, parental QoL was repeatedly assessed using the Ulm Quality of Life Inventory for Parents (ULQIE) at three different time points: admission to the rehabilitation clinic, discharge after four weeks of inpatient treatment, and at a six-month follow-up. Parental QoL increased markedly during rehabilitation treatment (mothers eta (2)=.326, fathers eta (2)=.249). Moreover, six months after the intervention, parental quality of life was still markedly improved compared to baseline assessment (mothers eta (2)=.259, fathers eta (2)=.069). The child's diagnosis had no effect on the level and course of parental QoL. Taking part in family-oriented rehabilitation can improve the QoL of parents of children suffering from cancer, cardiac diseases or cystic fibrosis. Such programs could be expected to affect the way chronically ill children cope with their condition and this should be examined in future studies.

Quality of life in people with mental illness in non-residential community mental health services in Hong Kong.

PubMed

Ng, P; Pan, J Y; Lam, P; Leung, A

2014-06-01

To identify the subjective quality of life in people with chronic mental health problems who were in non-residential community mental health services, and to investigate factors affecting their quality of life after the illness. People with mental illness (n = 105) were recruited. They were assessed with the self-rated Hong Kong Chinese version of the World Health Organization Quality of Life Brief questionnaire. The participants had lower total quality-of-life and the 4 domain scores of the questionnaire than the general population. They were particularly dissatisfied with their financial situation. Duration of illness was positively correlated with subjective quality-of-life variables while age at onset of the mental illness was negatively correlated with subjective quality of life, in particular the physical health, psychological health, and environmental domains. This study highlighted the significance of duration and age at onset of illness in subjective quality of life of people with mental illness. A longitudinal study to test the causal relationships between these factors and the quality of life in people with mental illness is recommended.

Examining the impact of early longitudinal patient exposure on medical students’ career choices

PubMed Central

Kwok, Jason; Wu, Vincent; Sanfilippo, Anthony; Bowes, Kathryn; Pinchin, Sheila

2017-01-01

Background Medical schools include career direction experiences to help students make informed career decisions. Most experiences are short, precluding students from attaining adequate exposure to long-term encounters within medicine. We investigated the impact of the First Patient Program (FPP), which fosters longitudinal patient exposure by pairing junior medical students with chronically ill patients through their healthcare journey, in instilling career direction. Methods Medical students who completed at least 6-months in the FPP participated in a cross-sectional survey. Students’ answers were analyzed with respect to the number of FPP appointments attended. Thematic analysis was conducted to explore qualitative responses. Results One hundred and forty-eight students participated in the survey. Only 28 (19%) students stated that the FPP informed their career decisions. Thirty-nine percent of students who attended four or more appointments indicated that the FPP informed their career decisions, compared to 16% of students who attended less (p=0.021). Thematic analysis revealed two themes: 1) Students focused mainly on patient encounters within FPP; and 2) Students sought career directions from other experiences. Conclusion The majority of students did not attain career guidance from the FPP, but rather used the program to understand the impact of chronic illness from the patient’s perspective. PMID:28344721

Parents' perspectives on caring for children after solid organ transplant.

PubMed

Lerret, Stacee M; Johnson, Norah L; Haglund, Kristin A

2017-07-01

To explore parents' experiences of the transition from hospital to home and complex chronic illness management following their children's solid organ transplant (SOT). Qualitative component of a larger mixed methods longitudinal study. Parents of SOT recipients were interviewed three times following hospital discharge from five major pediatric transplant hospitals in the United States. Analysis of parent interviews (N = 48) resulted in three themes that characterized the phases of transition to home and complex chronic illness care. Three themes, corresponding to the three time periods of data collection, included "getting back to normal" at 3 weeks, "becoming routine" at 3 months, and "facing a future" at 6 months. Challenges families experienced over the course of their transition are also described. The transition from hospital to home and complex chronic condition care is challenging and changes over time. Nurses are called upon to prepare parents to become knowledgeable and confident to care for the child after hospital discharge. Nurses can best support families in transition after SOT by anticipating and understanding their dynamic challenging complex care needs. © 2017 Wiley Periodicals, Inc.

A longitudinal study to identify the influence of quality of chronic care delivery on productive interactions between patients and (teams of) healthcare professionals within disease management programmes.

PubMed

Cramm, Jane Murray; Nieboer, Anna Petra

2014-09-19

The chronic care model is an increasingly used approach to improve the quality of care through system changes in care delivery. While theoretically these system changes are expected to increase productive patient-professional interaction empirical evidence is lacking. This study aims to identify the influence of quality of care on productive patient-professional interaction. Longitudinal study in 18 Dutch regions. Questionnaires were sent to all 5076 patients participating in 18 Disease Management Programmes (DMPs) in 2010 (2676 (53%) respondents). One year later (T1), 4693 patients still participating in the DMPs received a questionnaire (2191 (47%) respondents) and 2 years later (in 2012; T2) 1722 patients responded (out of 4350; 40% response). DMPs Patients' perceptions of the productivity of interactions (measured as relational coordination/coproduction of care) with professionals. Patients were asked about communication dimensions (frequent, accurate, and problem-solving communication) and relationship dimensions (shared goals and mutual respect). After controlling for background characteristics these results clearly show that quality of chronic care (T0), first-year changes in quality of chronic care (T1-T0) and second-year changes in quality of chronic care (T2-T1) predicted productive interactions between patients and professionals at T2 (all at p≤0.001). Furthermore, we found a negative relationship between lower educational level and productive interactions between patients and professionals 2 years later. We can conclude that successfully dealing with the consequences of chronic illnesses requires proactive patients who are able to make productive decisions together with their healthcare providers. Since patients and professionals share responsibility for management of the chronic illness, they must also share control of interactions and decisions. The importance of patient-centeredness is growing and this study reports a first example of how quality of chronic care stimulates productive interactions between patients and professionals. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

A prospective analysis of the effect of neighbourhood and individual social capital on changes in self-rated health of people with chronic illness.

PubMed

Waverijn, Geeke; Wolfe, Mary K; Mohnen, Sigrid; Rijken, Mieke; Spreeuwenberg, Peter; Groenewegen, Peter

2014-07-03

Social capital in the living environment, both on the individual and neighbourhood level, is positively associated with people's self-rated health; however, prospective and longitudinal studies are rare, making causal conclusions difficult. To shed more light on the direction of the relationship between social capital and self-rated health, we investigated main and interaction effects of individual and neighbourhood social capital at baseline on changes in self-rated health of people with a somatic chronic disease. Individual social capital, self-rated health and other individual level variables were assessed among a nationwide sample of 1048 non-institutionalized people with a somatic chronic disease residing in 259 neighbourhoods in the Netherlands. The assessment of neighbourhood social capital was based on data from a nationwide survey among the general Dutch population. The association of social capital with changes in self-rated health was assessed by multilevel regression analysis. Both individual social capital and neighbourhood social capital at baseline were significantly associated with changes in self-rated health over the time period of 2005 to 2008 while controlling for several disease characteristics, other individual level and neighbourhood level characteristics. No significant interactions were found between social capital on the individual and on the neighbourhood level. Higher levels of individual and neighbourhood social capital independently and positively affect changes in self-rated health of people with chronic illness. Although most of the variation in health is explained at the individual level, one's social environment should be considered as a possible relevant influence on the health of the chronically ill.

ARAMIS (The American Rheumatism Association Medical Information System)

PubMed Central

Fries, James F.; McShane, Dennis J.

1986-01-01

ARAMIS is a prototype of a national chronic-disease data-bank system consisting of parallel, longitudinal, clinical data sets from 17 diverse locations; the data describe the courses of thousands of patients with rheumatic disease followed over many years. Chronic-disease data-bank systems include the data themselves, protocols to ensure their quality, computer systems for their manipulation, statistical procedures for analysis and an appropriately skilled staff. Such a data resource facilitates analyzing long-term health outcomes and the factors associated with particular outcomes. Such systems are mandated by the overwhelming prevalence of chronic illness; the variability, complexity and uniqueness of a patient's course; the difficulties of traditional randomized approaches in these areas, and the time span required for studying these problems. ImagesFigure 4. PMID:3492816

Longitudinal Model Predicting Self-Concept in Pediatric Chronic Illness.

PubMed

Emerson, Natacha D; Morrell, Holly E R; Neece, Cameron; Tapanes, Daniel; Distelberg, Brian

2018-04-16

Although self-concept has been identified as salient to the psychosocial adjustment of adolescents dealing with a chronic illness (CI), little research has focused on its predictors it. Given that depression and parent-child attachment have been linked to self-concept in the population at large, the goal of this study was to evaluate these relationships longitudinally in a sample of adolescents with CI. Using participant data from the Mastering Each New Direction (MEND) program, a 3-month psychosocial, family based intensive outpatient program for adolescents with CI, we employed multilevel modeling to test longitudinal changes in self-concept, as predicted by depressive symptoms and parent-child attachment, in a sample of 50 youths (M age  = 14.56, SD age  = 1.82) participating in MEND. Both "time spent in the program" and decreases in depressive symptoms were associated with increases in self-concept over time. Higher baseline levels of avoidant attachment to both mother and father were also associated with greater initial levels of self-concept. Targeting depressive symptoms and supporting adaptive changes in attachment may be key to promoting a healthy self-concept in pediatric CI populations. The association between avoidant attachment and higher baseline self-concept scores may reflect differences in participants' autonomy, self-confidence, or depression. Limitations of the study include variability in the amount of time spent in the program, attrition in final time point measures, and the inability to fully examine and model all potential covariates due to a small sample size (e.g. power). © 2018 Family Process Institute.

Psychological distress, depression, anxiety, and burnout among international humanitarian aid workers: a longitudinal study.

PubMed

Lopes Cardozo, Barbara; Gotway Crawford, Carol; Eriksson, Cynthia; Zhu, Julia; Sabin, Miriam; Ager, Alastair; Foy, David; Snider, Leslie; Scholte, Willem; Kaiser, Reinhard; Olff, Miranda; Rijnen, Bas; Simon, Winnifred

2012-01-01

International humanitarian aid workers providing care in emergencies are subjected to numerous chronic and traumatic stressors. To examine consequences of such experiences on aid workers' mental health and how the impact is influenced by moderating variables. We conducted a longitudinal study in a sample of international non-governmental organizations. Study outcomes included anxiety, depression, burnout, and life and job satisfaction. We performed bivariate regression analyses at three time points. We fitted generalized estimating equation multivariable regression models for the longitudinal analyses. Study participants from 19 NGOs were assessed at three time points: 212 participated at pre-deployment; 169 (80%) post-deployment; and 154 (73%) within 3-6 months after deployment. Prior to deployment, 12 (3.8%) participants reported anxiety symptoms, compared to 20 (11.8%) at post-deployment (p = 0.0027); 22 (10.4%) reported depression symptoms, compared to 33 (19.5%) at post-deployment (p = 0.0117) and 31 (20.1%) at follow-up (p = .00083). History of mental illness (adjusted odds ratio [AOR] 4.2; 95% confidence interval [CI] 1.45-12.50) contributed to an increased risk for anxiety. The experience of extraordinary stress was a contributor to increased risk for burnout depersonalization (AOR 1.5; 95% CI 1.17-1.83). Higher levels of chronic stress exposure during deployment were contributors to an increased risk for depression (AOR 1.1; 95% CI 1.02-1.20) comparing post- versus pre-deployment, and increased risk for burnout emotional exhaustion (AOR 1.1; 95% CI 1.04-1.19). Social support was associated with lower levels of depression (AOR 0.9; 95% CI 0.84-0.95), psychological distress (AOR = 0.9; [CI] 0.85-0.97), burnout lack of personal accomplishment (AOR 0.95; 95% CI 0.91-0.98), and greater life satisfaction (p = 0.0213). When recruiting and preparing aid workers for deployment, organizations should consider history of mental illness and take steps to decrease chronic stressors, and strengthen social support networks.

Defining guilt in depression: a comparison of subjects with major depression, chronic medical illness and healthy controls.

PubMed

Ghatavi, Kayhan; Nicolson, Rob; MacDonald, Cathy; Osher, Sue; Levitt, Anthony

2002-04-01

Although guilt is a widely accepted feature of depression, there is limited and inconsistent data defining the nature of this symptom. The purpose of the current study was to examine the specificity and nature of guilt in subjects with major depression as compared to patients with another chronic medical illness and healthy controls. Outpatients with current major depressive episode (MDE; n=34), past-MDE (n=22), chronic cardiac illness (n=20) and healthy controls (n=59) were administered the following measures: The Guilt Inventory (GI), State Shame and Guilt Scale (SSGS), 17-item Hamilton Rating Scale for Depression (Ham-D) and the Structured Clinical Interview for DSM-IV. Overall multivariate analysis of covariance comparing mean scores for the six guilt subscales [state-guilt, trait-guilt, moral standards (from the GI); state-guilt, -pride, and -shame (from the SSGS)] across the four groups was significant (F=9.1, df=6:121, p<0.0001). Post-hoc analysis revealed the following differences (each at least p<0.01): for state-guilt (GI), current-MDE>past-MDE>cardiac=healthy controls; for trait-guilt (GI), current-MDE=past-MDE>cardiac=healthy controls; for state-shame, -guilt and -pride (SSGS), current-MDE>past-MDE, past-MDE=cardiac, past-MDE>healthy, cardiac=healthy controls. Among depressed patients, there was significant correlation between Ham-D score and all guilt sub-scales (p<0.01), except moral standards. The cardiac group may have less illness burden than currently depressed. State expression of guilt, shame and low pride distinguish acutely depressed from all other groups, and are highly influenced by severity of depression. Trait-guilt does not differentiate acute from past depressed. Data suggests guilt may represent both an enduring and fluctuating feature of depressive illness over its longitudinal course.

A longitudinal study of the impact of chronic psychological stress on health-related quality of life and clinical biomarkers: protocol for the Australian Healthy Aging of Women Study.

PubMed

Seib, Charrlotte; Whiteside, Eliza; Humphreys, Janice; Lee, Kathryn; Thomas, Patrick; Chopin, Lisa; Crisp, Gabrielle; O'Keeffe, Angela; Kimlin, Michael; Stacey, Andrew; Anderson, Debra

2014-01-08

Despite advancements in our understanding of the importance of stress reduction in achieving good health, we still only have limited insight into the impact of stress on cellular function. Recent studies have suggested that exposure to prolonged psychological stress may alter an individual's physiological responses, and contribute to morbidity and mortality. This paper presents an overview of the study protocol we are using to examine the impact of life stressors on lifestyle factors, health-related quality of life and novel and established biomarkers of stress in midlife and older Australian women.The primary aim of this study is to explore the links between chronic psychological stress on both subjective and objective health markers in midlife and older Australian women. The study examines the extent to which exposure frightening, upsetting or stressful events such as natural disasters, illness or death of a relative, miscarriage and relationship conflict is correlated with a variety of objective and subjective health markers. This study is embedded within the longitudinal Healthy Aging of Women's study which has collected data from midlife and older Australian women at 5 yearly intervals since 2001, and uses the Allostastic model of women's health by Groër and colleagues in 2010. The current study expands the focus of the HOW study and will assess the impact of life stressors on quality of life and clinical biomarkers in midlife and older Australian women to explain the impact of chronic psychological stress in women. The proposed study hypothesizes that women are at increased risk of exposure to multiple or repeated stressors, some being unique to women, and the frequency and chronicity of stressors increases women's risk of adverse health outcomes. This study aims to further our understanding of the relationships between stressful life experiences, perceived quality of life, stress biomarkers, chronic illness, and health status in women.

The Chronically Ill Child in the School.

ERIC Educational Resources Information Center

Sexson, Sandra; Madan-Swain, Avi

1995-01-01

Examines the effects of chronic illness on the school-age population. Facilitating successful functioning of chronically ill youths is a growing problem. Focuses on problems encountered by the chronically ill student who has either been diagnosed with a chronic illness or who has survived such an illness. Discusses the role of the school…

Redesigning the Practice Model for General Internal Medicine. A Proposal for Coordinated Care

PubMed Central

2007-01-01

General Internal Medicine (GIM) faces a burgeoning crisis in the United States, while patients with chronic illness confront a disintegrating health care system. Reimbursement that rewards using procedures and devices rather than thoughtful examination and management, plus onerous administrative burdens, are prompting physicians to pursue specialties other than GIM. This monograph promotes 9 principles supporting the concept of Coordinated Care—a strategy to sustain quality and enhance the attractiveness and viability of care delivered by highly trained General Internists who specialize in the longitudinal care of adult patients with acute and chronic illness. This approach supplements and extends the concept of the Advanced Medical Home set forth by the American College of Physicians. Specific components of Coordinated Care include clinical support, information management, and access and scheduling. Success of the model will require changes in the payment system that fairly reimburse physicians who provide leadership to teams that deliver high quality, coordinated care. PMID:17356976

Neuropsychological functioning, illness perception, mood and quality of life in chronic fatigue syndrome, autoimmune thyroid disease and healthy participants.

PubMed

Dickson, A; Toft, A; O'Carroll, R E

2009-09-01

This study attempted to longitudinally investigate neuropsychological function, illness representations, self-esteem, mood and quality of life (QoL) in individuals with chronic fatigue syndrome (CFS) and compared them with both healthy participants and a clinical comparison group of individuals with autoimmune thyroid disease (AITD). Neuropsychological evaluation was administered at two time points, five weeks apart. Twenty-one individuals with CFS, 20 individuals with AITD and 21 healthy participants were matched for age, pre-morbid intelligence, education level and socio-economic status (SES). All groups also completed measures of illness perceptions, mood, self-esteem and QoL at both time points. The CFS group showed significantly greater impairment on measures of immediate and delayed memory, attention and visuo-constructional ability, and reported significantly higher levels of anxiety and depression. After controlling for the effects of mood, the CFS group still demonstrated significant impairment in attention. The CFS group also reported significantly lower self-reported QoL than the AITD and healthy participants. In terms of illness perceptions, the AITD group believed that their condition would last longer, that they had more treatment control over their condition, and reported less concern than the CFS group. These results suggest that the primary cognitive impairment in CFS is attention and that this is not secondary to affective status. The lower treatment control perceptions and greater illness concerns that CFS patients report may be causally related to their affective status.

Healthcare improvement as planned system change or complex responsive processes? a longitudinal case study in general practice

PubMed Central

2013-01-01

Background Interest in how to implement evidence-based practices into routine health care has never been greater. Primary care faces challenges in managing the increasing burden of chronic disease in an ageing population. Reliable prescriptions for translating knowledge into practice, however, remain elusive, despite intense research and publication activity. This study seeks to explore this dilemma in general practice by challenging the current way of thinking about healthcare improvement and asking what can be learned by looking at change through a complexity lens. Methods This paper reports the local level of an embedded case study of organisational change for better chronic illness care over more than a decade. We used interviews, document review and direct observation to explore how improved chronic illness care developed in one practice. This formed a critical case to compare, using pattern matching logic, to the common prescription for local implementation of best evidence and a rival explanation drawn from complexity sciences interpreted through modern sociology and psychology. Results The practice changed continuously over more than a decade to deliver better chronic illness care in line with research findings and policy initiatives – re-designing care processes, developing community linkages, supporting patient self-management, using guidelines and clinical information systems, and integrating nurses into the practice team. None of these improvements was designed and implemented according to an explicit plan in response to a documented gap in chronic disease care. The process that led to high quality chronic illness care exhibited clear complexity elements of co-evolution, non-linearity, self-organisation, emergence and edge of chaos dynamics in a network of agents and relationships where a stable yet evolving way of organizing emerged from local level communicative interaction, power relating and values based choices. Conclusions The current discourse of implementation science as planned system change did not match organisational reality in this critical case of improvement in general practice. Complexity concepts translated in human terms as complex responsive processes of relating fit the pattern of change more accurately. They do not provide just another fashionable blueprint for change but inform how researchers, policymakers and providers participate in improving healthcare. PMID:23617833

Is Anyone Paying Attention to Physician Report Cards? The Impact of Increased Availability on Consumers' Awareness and Use of Physician Quality Information.

PubMed

Shi, Yunfeng; Scanlon, Dennis P; Bhandari, Neeraj; Christianson, Jon B

2017-08-01

To determine if the release of health care report cards focused on physician practice quality measures leads to changes in consumers' awareness and use of this information. Data from two rounds of a survey of the chronically ill adult population conducted in 14 regions across the United States, combined with longitudinal information from a public reporting tracking database. Both data were collected as part of the evaluation for Aligning Forces for Quality, a nationwide quality improvement initiative funded by the Robert Wood Johnson Foundation. Using a longitudinal design and an individual-level fixed effects modeling approach, we estimated the impact of community public reporting efforts, measured by the availability and applicability of physician quality reports, on consumers' awareness and use of physician quality information (PQI). The baseline level of awareness was 12.6 percent in our study sample, drawn from the general population of chronically ill adults. Among those who were not aware of PQI at the baseline, when PQI became available in their communities for the first time, along with quality measures that are applicable to their specific chronic conditions, the likelihood of PQI awareness increased by 3.8 percentage points. For the same group, we also find similar increases in the uses of PQI linked to newly available physician report cards, although the magnitudes are smaller, between 2 and 3 percentage points. Specific contents of physician report cards can be an important factor in consumers' awareness and use of PQI. Policies to improve awareness and use of PQI may consider how to customize quality report cards and target specific groups of consumers in dissemination. © Health Research and Educational Trust.

A narrative literature review regarding job retention strategies for people with chronic illnesses.

PubMed

Koch, Lynn C; Rumrill, Phillip D; Conyers, Liza; Wohlford, Sarah

2013-01-01

Job retention is a major concern for individuals with chronic illnesses, who represent a rapidly growing vocational rehabilitation (VR) consumer population. The purpose of this article is to examine selected job retention considerations for consumers with chronic illnesses. The authors (a) describe distinguishing characteristics of chronic illnesses in terms of populations affected and psychosocial implications, (b) discuss the vocational implications of chronic illnesses, (c) provide general considerations for the provision of job retention services, and (d) examine job retention strategies aimed at improving employment outcomes for individuals with chronic illnesses.

Siblings of children with a chronic illness: a meta-analysis.

PubMed

Sharpe, Donald; Rossiter, Lucille

2002-12-01

To review the literature pertaining to the siblings of children with a chronic illness. Fifty-one published studies and 103 effect sizes were identified and examined through meta-analysis. We found (1) a modest, negative effect size statistic existed for siblings of children with a chronic illness relative to comparison participants or normative data; (2) heterogeneity existed for those effect sizes; (3) parent reports were more negative than child self-reports; (4) psychological functioning (i.e., depression, anxiety), peer activities, and cognitive development scores were lower for siblings of children with a chronic illness compared to controls; and (5) a cluster of chronic illnesses with daily treatment regimes was associated with negative effect statistics compared to chronic illnesses that did not affect daily functioning. More methodologically sound studies investigating the psychological functioning of siblings of children with a chronic illness are needed. Clinicians need to know that siblings of children with a chronic illness are at risk for negative psychological effects. Intervention programs for the siblings and families of children with a chronic illness should be developed.

Effects of spousal illness on self-rated health in older couples: Role of sex and proximity to adult children.

PubMed

Saito, Tami; Wakui, Tomoko; Kai, Ichiro

2016-12-01

The present study examined the impact of serious spousal illness or hospitalization on community-dwelling older adults' self-rated health (SRH), and explored the moderating effects of sex and residential proximity to adult children using a prospective and representative survey design. The sample was obtained from a 2-year longitudinal survey of non-institutionalized men and women aged 65 years and older carried out in the Fukui Prefecture, Japan (n = 1573). The effect of serious spousal illness or hospitalization on SRH during the survey period was examined after controlling for baseline SRH, sex, age, socioeconomic status, chronic illness and other baseline covariates. Overall, 15.7% of respondents had experienced a serious spousal illness or hospitalization within the previous year. After controlling for covariates, spousal illness had a significant negative effect on SRH at follow-up (P = 0.031). More serious effects of spousal illness were found in older adults whose children lived farther than 30 min away than in couples who lived with their children (P = 0.009). However, there was no significant interaction effect between sex and spousal illness. Serious spousal illness could cause deterioration in the health of older spouses, particularly for older parents whose children live a distance away. Geriatr Gerontol Int 2016; 16: 1332-1338. © 2015 Japan Geriatrics Society.

Illness uncertainty and illness intrusiveness as predictors of depressive and anxious symptomology in college students with chronic illnesses.

PubMed

Mullins, Alexandria J; Gamwell, Kaitlyn L; Sharkey, Christina M; Bakula, Dana M; Tackett, Alayna P; Suorsa, Kristina I; Chaney, John M; Mullins, Larry L

2017-07-01

To examine predictors of psychological functioning in college students with chronic illnesses. Participants (N = 1413) included 364 students with self-reported diagnoses of asthma or allergies, 148 students with other chronic illnesses (eg, epilepsy, type 1 diabetes), and 901 healthy students. Data were collected between November 2013 and May 2015. Participants completed online measures of psychosocial functioning, including illness uncertainty, illness intrusiveness, depression, and anxiety. Students with chronic illnesses other than asthma or allergies evidenced the greatest levels of anxious (p <. 05), but not depressive symptomology. Additionally, this group reported greater illness uncertainty and intrusiveness (p <. 05) compared to their peers. Uncertainty and intrusiveness independently predicted depressive and anxious symptoms for students in both illness groups. Compared to peers with asthma or allergies, college students with other chronic illnesses reported higher levels of anxious symptoms. Illness uncertainty and intrusiveness appear to be predictors of psychological distress, regardless of illness.

Psychological Distress, Depression, Anxiety, and Burnout among International Humanitarian Aid Workers: A Longitudinal Study

PubMed Central

Lopes Cardozo, Barbara; Gotway Crawford, Carol; Eriksson, Cynthia; Zhu, Julia; Sabin, Miriam; Ager, Alastair; Foy, David; Snider, Leslie; Scholte, Willem; Kaiser, Reinhard; Olff, Miranda; Rijnen, Bas; Simon, Winnifred

2012-01-01

Background International humanitarian aid workers providing care in emergencies are subjected to numerous chronic and traumatic stressors. Objectives To examine consequences of such experiences on aid workers' mental health and how the impact is influenced by moderating variables. Methodology We conducted a longitudinal study in a sample of international non-governmental organizations. Study outcomes included anxiety, depression, burnout, and life and job satisfaction. We performed bivariate regression analyses at three time points. We fitted generalized estimating equation multivariable regression models for the longitudinal analyses. Results Study participants from 19 NGOs were assessed at three time points: 212 participated at pre-deployment; 169 (80%) post-deployment; and 154 (73%) within 3–6 months after deployment. Prior to deployment, 12 (3.8%) participants reported anxiety symptoms, compared to 20 (11.8%) at post-deployment (p = 0·0027); 22 (10.4%) reported depression symptoms, compared to 33 (19.5%) at post-deployment (p = 0·0117) and 31 (20.1%) at follow-up (p = .00083). History of mental illness (adjusted odds ratio [AOR] 4.2; 95% confidence interval [CI] 1·45–12·50) contributed to an increased risk for anxiety. The experience of extraordinary stress was a contributor to increased risk for burnout depersonalization (AOR 1.5; 95% CI 1.17–1.83). Higher levels of chronic stress exposure during deployment were contributors to an increased risk for depression (AOR 1·1; 95% CI 1·02–1.20) comparing post- versus pre-deployment, and increased risk for burnout emotional exhaustion (AOR 1.1; 95% CI 1.04–1.19). Social support was associated with lower levels of depression (AOR 0·9; 95% CI 0·84–0·95), psychological distress (AOR = 0.9; [CI] 0.85–0.97), burnout lack of personal accomplishment (AOR 0·95; 95% CI 0·91–0·98), and greater life satisfaction (p = 0.0213). Conclusions When recruiting and preparing aid workers for deployment, organizations should consider history of mental illness and take steps to decrease chronic stressors, and strengthen social support networks. PMID:22984592

A Systematic Review of Loneliness and Common Chronic Physical Conditions in Adults

PubMed Central

Petitte, Trisha; Mallow, Jennifer; Barnes, Emily; Petrone, Ashley; Barr, Taura; Theeke, Laurie

2015-01-01

Loneliness is a prevalent and global problem for adult populations and has been linked to multiple chronic conditions in quantitative studies. This paper presents a systematic review of quantitative studies that examined the links between loneliness and common chronic conditions including: heart disease, hypertension, stroke, lung disease, and metabolic disorders. A comprehensive literature search process guided by the PRISMA statement led to the inclusion of 33 articles that measure loneliness in chronic illness populations. Loneliness is a significant biopsychosocial stressor that is prevalent in adults with heart disease, hypertension, stroke, and lung disease. The relationships among loneliness, obesity, and metabolic disorders are understudied but current research indicates that loneliness is associated with obesity and with psychological stress in obese persons. Limited interventions have demonstrated long-term effectiveness for reducing loneliness in adults with these same chronic conditions. Future longitudinal randomized trials that enhance knowledge of how diminishing loneliness can lead to improved health outcomes in persons with common chronic conditions would continue to build evidence to support the translation of findings to recommendations for clinical care. PMID:26550060

Perceived quality of chronic illness care is associated with self-management: Results of a nationwide study in the Netherlands.

PubMed

van Houtum, L; Heijmans, M; Rijken, M; Groenewegen, P

2016-04-01

Healthcare providers are increasingly expected to help chronically ill patients understand their own central role in managing their illness. The aim of this study was to determine whether experiencing high-quality chronic illness care and having a nurse involved in their care relate to chronically ill people's self-management. Survey data from 699 people diagnosed with chronic diseases who participated in a nationwide Dutch panel-study were analysed using linear regression analysis, to estimate the association between chronic illness care and various aspects of patients' self-management, while controlling for their socio-demographic and illness characteristics. Chronically ill patients reported that the care they received was of high quality to some extent. Patients who had contact with a practise nurse or specialised nurse perceived the quality of the care they received as better than patients who only had contact with a GP or medical specialist. Patients' perceptions of the quality of care were positively related to all aspects of their self-management, whereas contact with a practise nurse or specialised nurse in itself was not. Chronically ill patients who have the experience to receive high-quality chronic illness care that focusses on patient activation, decision support, goal setting, problem solving, and coordination of care are better self-managers. Having a nurse involved in their care seems to be positively valued by chronically ill patients, but does not automatically imply better self-management. Copyright © 2016. Published by Elsevier Ireland Ltd.

Protective connections and educational attainment among young adults with childhood-onset chronic illness.

PubMed

Maslow, Gary; Haydon, Abigail A; McRee, Annie-Laurie; Halpern, Carolyn T

2012-08-01

Youth with childhood-onset chronic illness (COCI) are at risk of poor educational attainment. Specific protective factors that promote college graduation in this population have not been studied previously. In this study, we examine the role protective factors during adolescence play in promoting college graduation among young adults with COCI. Data were collected from 10,925 participants in the National Longitudinal Study of Adolescent Health (Add Health). Protective factors present before 18 years of age included mentoring, parent relationship quality, school connectedness, and religious attendance. College graduation was the outcome of interest assessed when participants had a mean age of 28 years. Analysis was stratified by presence of COCI. About 2% of participants (N = 230) had 1 of 4 COCIs (cancer, diabetes, epilepsy, or heart disease). All 4 protective factors were associated with college graduation for youth without COCI. In the final multivariate model, only school connectedness was associated with college graduation for youth with COCI. School connectedness is of particular importance in promoting educational attainment for youth with COCI. © 2012, American School Health Association.

Getting sick and falling behind: health and the risk of mortgage default and home foreclosure.

PubMed

Houle, Jason N; Keene, Danya E

2015-04-01

An emerging literature shows that mortgage strain can lead to poor health outcomes, but less work has focused on whether and how health shocks influence mortgage distress. We examine the link between changes in health status and default/foreclosure risk among older middle-aged adults. We used National Longitudinal Study of Youth 1979 data and multivariate logistic regression models to examine the relationship between changes in health limitations and chronic conditions across survey waves and risk of mortgage default and foreclosure. We found that changes in health limitations and chronic conditions increased the risk of default and foreclosure between 2007 and 2010. These associations were partially mediated by changes in family income and loss of health insurance. From a policy perspective, the strong link between the onset of illness and foreclosure suggests a need to re-examine the safety-nets that are available to individuals who become ill or disabled. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Changes in Optimism Are Associated with Changes in Health Over Time Among Older Adults.

PubMed

Chopik, William J; Kim, Eric S; Smith, Jacqui

2015-09-01

Little is known about how optimism differs by age and changes over time, particularly among older adults. Even less is known about how changes in optimism are related to changes in physical health. We examined age differences and longitudinal changes in optimism in 9,790 older adults over a four-year period. We found an inverted U-shaped pattern between optimism and age both cross-sectionally and longitudinally, such that optimism generally increased in older adults before decreasing. Increases in optimism over a four-year period were associated with improvements in self-rated health and fewer chronic illnesses over the same time frame. The findings from the current study are consistent with changes in emotion regulation strategies employed by older adults and age-related changes in well-being.

Chronically Ill Children in America: Background and Recommendations.

ERIC Educational Resources Information Center

Hobbs, Nicholas; And Others

The report examines chronic illness in children and considers issues and recommendations for change in public policies and programs affecting chronically ill children and their families. The background chapter notes the significance of the problem, reviews 11 diseases that are representative of the severe chronic illnesses of childhood: juvenile…

Development and psychometric evaluation of the Chronic Illness Anticipated Stigma Scale

PubMed Central

Quinn, Diane M.; Kalichman, Seth C.; Park, Crystal L.

2015-01-01

The Chronic Illness Anticipated Stigma Scale (CIASS) was developed to measure anticipated stigma (i.e., expectations of prejudice, stereotyping, and discrimination) among people living with chronic illnesses. The CIASS is a 12-item scale with three subscales differentiating among sources of anticipated stigma, including friends and family members, work colleagues, and healthcare workers. Results support the reliability, validity, and generalizability of the CIASS in two samples of people living with chronic illnesses. The CIASS was correlated with other stigma-related constructs as well as indicators of mental health, physical health, and health behaviors. The CIASS can help researchers gauge the degree to which people living with chronic illnesses anticipate stigma, better understand the processes by which anticipated stigma contributes to the health and behavior of people living with chronic illnesses, and compare the extent to which people living with different types of chronic illnesses anticipate stigma. PMID:22526525

Cuba's Aging and Alzheimer Longitudinal Study.

PubMed

Llibre-Rodríguez, Juan de Jesús; Valhuerdi-Cepero, Adolfo; López-Medina, Ana M; Noriega-Fernández, Lisseth; Porto-Álvarez, Rutbeskia; Guerra-Hernández, Milagros A; Bosch-Bayard, Rodolfo I; Zayas-Llerena, Tania; Hernandez-Ulloa, Elaine; Rodríguez-Blanco, Ana L; Salazar-Pérez, Enrique; Llibre-Guerra, Juan C; Llibre-Guerra, Jorge J; Marcheco-Teruel, Beatriz

2017-01-01

Aging and Alzheimer is a prospective, longitudinal cohort study involving 2944 adults aged ≥65 years from selected areas in Cuba's Havana and Matanzas Provinces. This door-to-door study, which began in 2003, includes periodic assessments of the cohort based on an interview; physical exam; anthropometric measurements; and diagnosis of dementia and its subtypes, other mental disorders, and other chronic non-communicable diseases and their risk factors. Information was gathered on sociodemographic characteristics; disability, dependency and frailty; use of health services; and characteristics of care and caregiver burden. The first assessment also included blood tests: complete blood count, blood glucose, kidney and liver function, lipid profile and ApoE4 genotype (a susceptibility marker). In 2007-2011, the second assessment was done of 2010 study subjects aged ≥65 years who were still alive. The study provides data on prevalence and incidence of dementia and its risk factors, and of related conditions that affect the health of older adults. It also contributes valuable experiences from field work and interactions with older adults and their families. Building on lessons learned, a third assessment to be done in 2016-2018 will incorporate a community intervention strategy to respond to diseases and conditions that predispose to dementia, frailty and dependency in older adults. KEYWORDS Dementia, Alzheimer disease, chronic disease, aging, chronic illness, frailty, dependency, cohort studies, Cuba.

The Chronic Illness Initiative: Supporting College Students with Chronic Illness Needs at DePaul University

ERIC Educational Resources Information Center

Royster, Lynn; Marshall, Olena

2008-01-01

College students with chronic illness find it difficult to succeed in traditional degree programs due to disruptions caused by relapses and unpredictable waxing and waning symptoms. College disability offices are often unable to help, both because their standard supports are not appropriate and because students with chronic illness frequently do…

The Special Educational Needs of Adolescents Living with Chronic Illness: A Literature Review

ERIC Educational Resources Information Center

Jackson, Megan

2013-01-01

Rates of chronic illness are increasing around the world and, accordingly, numbers of adolescent students living with chronic illness are also increasing. The challenges faced by these students and their teachers are complex. One of these challenges is the need of the adolescent with chronic illness to achieve some level of social conformity.…

Psychological characteristics of chronic depression: a longitudinal cohort study.

PubMed

Wiersma, Jenneke E; van Oppen, Patricia; van Schaik, Digna J F; van der Does, A J Willem; Beekman, Aartjan T F; Penninx, Brenda W J H

2011-03-01

Few studies have investigated the importance of psychological characteristics for chronicity of depression. Knowledge about psychological differences between chronically depressed persons and nonchronically depressed persons may help to improve treatment of chronic depression. This is the first study to simultaneously compare in large samples various psychological characteristics between chronically depressed and nonchronically depressed adults. Baseline data were drawn from the Netherlands Study of Depression and Anxiety (NESDA), an ongoing longitudinal cohort study aimed at examining the long-term course of depressive and anxiety disorders in different health care settings and phases of illness. Participants were aged 18 to 65 years at the baseline assessment in 2004-2007 and had a current diagnosis of DSM-IV major depressive disorder (N = 1,002). Chronicity of depression was defined as being depressed for 24 months or more in the past 4 to 5 years. The chronicity criterion was fulfilled by 31% (n = 312). The NEO Five-Factor Inventory measured the 5 personality domains, the Leiden Index of Depression Sensitivity-Revised was used to measure cognitive reactivity (eg, hopelessness, rumination), and the Mastery Scale measured external locus of control. Compared to the nonchronically depressed persons, the chronically depressed persons reported significantly higher levels of neuroticism (OR = 1.81; 95% CI, 1.55-2.12; P < .001), external locus of control (OR = 1.94; 95% CI, 1.66-2.28; P < .001), and the following dimensions of cognitive reactivity: hopelessness (OR = 1.64; 95% CI, 1.43-1.88; P < .001), aggression (OR = 1.29; 95% CI, 1.13-1.48; P < .001), risk aversion (OR = 1.43; 95% CI, 1.24-1.63; P < .001), and rumination (OR = 1.55; 95% CI, 1.34-1.78; P < .001). They had significantly lower levels of extraversion (OR = 0.57; 95% CI, 0.49-0.67; P < .001), agreeableness (OR = 0.85; 95% CI, 0.74-0.97; P = .02), and conscientiousness (OR = 0.77; 95% CI, 0.67-0.88; P < .001). When testing these variables multivariably, the odds of chronic depression were significantly increased among those with low extraversion (OR = 0.73; 95% CI, 0.61-0.88; P = .001), high rumination (OR = 1.24; 95% CI, 1.01-1.53; P = .04), and high external locus of control (OR = 1.48; 95% CI, 1.21-1.80; P < .001). Controlling for severity of depressive symptoms, age at onset, comorbidity with anxiety disorders, medical illnesses, and treatment status did not change these results. Our findings suggest that extraversion, rumination, and external locus of control, but not neuroticism, are differentiating psychological characteristics for chronicity of depression. These findings provide suggestions for more specific interventions, focused on extraversion, rumination, and external locus of control, in the treatment of chronic depression. © Copyright 2011 Physicians Postgraduate Press, Inc.

Development, Implementation, and Evaluation of a Curriculum to Prepare Volunteer Navigators to Support Older Persons Living With Serious Illness.

PubMed

Duggleby, Wendy; Pesut, Barbara; Cottrell, Laura; Friesen, Lynnelle; Sullivan, Kelli; Warner, Grace

2018-05-01

The purpose of this article is to report the development, implementation, and evaluation of a curriculum designed to prepare volunteer navigators to support community-dwelling older persons with serious chronic illness. The role of the volunteer navigator was to facilitate independence and quality of life through building social connections, improving access to resources, and fostering engagement. A curriculum was constructed from evidence-based competencies, piloted and revised, and then implemented in 7 subsequent workshops. Workshop participants were 51 volunteers and health-care providers recruited through local hospice societies and health regions. Curriculum was evaluated through satisfaction and self-efficacy questionnaires completed at workshop conclusion. Postworkshop evaluation indicated a high degree of satisfaction with the training. One workshop cohort of 7 participants was followed for 1 year to provide longitudinal evaluation data. Participants followed longitudinally reported improved self-efficacy over 12 months and some challenges with role transition. Future improvements will include further structured learning opportunities offered by telephone postworkshop, focusing on advocacy, communication, and conflict management. Overall, volunteers were satisfied with the curriculum and reported good self-perceived efficacy in their new role as navigators.

Child and adolescent psychiatry patients coming of age: a retrospective longitudinal study of inpatient treatment in Tyrol.

PubMed

Fuchs, Martin; Kemmler, Georg; Steiner, Hans; Marksteiner, Josef; Haring, Christian; Miller, Carl; Hausmann, Armand; Sevecke, Kathrin

2016-07-08

Mental illness is a common phenomenon at all ages. Various independent studies have shown that psychopathology is often expressed on a continuum from youth to adulthood. The aim of our study was to demonstrate a) the frequency of admission of former child and adolescent psychiatry inpatients (CAP-IP) to adult inpatient mental health facilities, and b) a potential longitudinal diagnostic shift. This is the first Austrian study designed to shed light on these issues. Nearly 1000 inpatient cases at a specialized child and adolescent care center were analyzed. These cases were then tracked using data matching with registry data from adult psychiatric institutions. Overall, our observational period was 23 years. 26 % of our sample of former CAP-IP used psychiatric inpatient mental health services as adults, thus indicating chronicity or reoccurrence. In line with previous literature, there were patients who stayed in the same diagnostic category as well as patients with a diagnostic shift from childhood to adulthood. Childhood and adolescence is a very important period for early intervention and prevention of mental illness. Our findings support the notion of the continuity of psychopathology from youth into adulthood.

'I think my body has become addicted to those tablets'. Chronic heart failure patients' understanding of and beliefs about their illness and its treatment: A qualitative longitudinal study from Uganda.

PubMed

Namukwaya, Elizabeth; Murray, Scott A; Downing, Julia; Leng, Mhoira; Grant, Liz

2017-01-01

Patients with heart failure in Uganda present for health care with advanced structural heart disease, have repeated hospitalizations and poorly controlled disease symptoms. The reasons for these are unclear. Literature from other settings shows that patients' understanding of their illness and their beliefs influence their health related behaviour. The study aimed to explore the beliefs of patients with heart failure, their understanding of their illness and its treatment, and how this influenced their health related behaviour to inform future health education programs, information and palliative care services. Serial qualitative in-depth interviews were conducted with Heart Failure patients who were purposively sampled and recruited in Mulago National Referral Hospital until thematic saturation was reached. In-depth interviews were conducted at three time points over the course of their illness with intervals of 3 months between interviews. A grounded theory approach was used in data analysis. The University of Edinburgh ethics committee, Mulago Hospital Research Ethics committee and the Uganda National Council of Science and Technology (Reference numbers D/GC/178; MREC 33, SS 3083 respectively) approved the research. A total of 40 face to face qualitative longitudinal interviews (36-patient alone, 4 paired-patient and family carer), were conducted with 21 patients. The findings revealed that heart failure patients were unaware of the symptoms of the illness and their definition of illness differed from that of health professionals. Patients understood their diagnosis, cause of illness, prognosis and the importance of the medicines differently from health professionals, and had insufficient information on self-care. Lay beliefs were used to explain many aspects of the illness and treatments. All these influenced where patients sought care and their adherence to treatment, self-care and follow up leading to uncontrolled disease. There is a high level of health illiteracy among heart failure patients in Uganda. Patients rely on lay beliefs to make health decisions and medical information is often miscomprehended. There is an urgent need for health education using culturally appropriate information.

‘I think my body has become addicted to those tablets’. Chronic heart failure patients’ understanding of and beliefs about their illness and its treatment: A qualitative longitudinal study from Uganda

PubMed Central

Murray, Scott A.; Downing, Julia; Leng, Mhoira; Grant, Liz

2017-01-01

Background Patients with heart failure in Uganda present for health care with advanced structural heart disease, have repeated hospitalizations and poorly controlled disease symptoms. The reasons for these are unclear. Literature from other settings shows that patients’ understanding of their illness and their beliefs influence their health related behaviour. The study aimed to explore the beliefs of patients with heart failure, their understanding of their illness and its treatment, and how this influenced their health related behaviour to inform future health education programs, information and palliative care services. Methods Serial qualitative in-depth interviews were conducted with Heart Failure patients who were purposively sampled and recruited in Mulago National Referral Hospital until thematic saturation was reached. In-depth interviews were conducted at three time points over the course of their illness with intervals of 3 months between interviews. A grounded theory approach was used in data analysis. The University of Edinburgh ethics committee, Mulago Hospital Research Ethics committee and the Uganda National Council of Science and Technology (Reference numbers D/GC/178; MREC 33, SS 3083 respectively) approved the research. Results A total of 40 face to face qualitative longitudinal interviews (36-patient alone, 4 paired-patient and family carer), were conducted with 21 patients. The findings revealed that heart failure patients were unaware of the symptoms of the illness and their definition of illness differed from that of health professionals. Patients understood their diagnosis, cause of illness, prognosis and the importance of the medicines differently from health professionals, and had insufficient information on self-care. Lay beliefs were used to explain many aspects of the illness and treatments. All these influenced where patients sought care and their adherence to treatment, self-care and follow up leading to uncontrolled disease. Conclusion There is a high level of health illiteracy among heart failure patients in Uganda. Patients rely on lay beliefs to make health decisions and medical information is often miscomprehended. There is an urgent need for health education using culturally appropriate information. PMID:28957338

Caring for teens with chronic illness: risky business?

PubMed

Louis-Jacques, Jennifer; Samples, Cathryn

2011-08-01

With advances in medicine, more children with chronic illness are reaching adolescence and young adulthood. Research has shown that this group is not immune to the behavioral risks endorsed by healthy adolescents. Recent literature exploring the etiology of risk behaviors and their impact on chronic illness is presented. Risk taking may be the result of differential maturation of two distinct parts of the adolescent brain. Risk taking can be considered normal in adolescents with chronic illness, but there is some evidence that chronic illness affects normal psychosocial development. Moreover, evidence supports that chronic illness can lead to disparities in risk education and assessment because of disease focused management rather than a more comprehensive approach. Youth living with chronic illnesses face unique challenges in accomplishing the developmental tasks of adolescence. These challenges include risk behaviors, which jeopardize current and future health. The reasons for risk taking are multifactorial and require providers to make the adolescent and not the illness the center of management. More research is needed on how to improve developmentally appropriate and relevant interventions to aid in safe passage into adulthood.

Predictors of self-reported health-related quality of life according to the EQ-5D-Y in chronically ill children and adolescents with asthma, diabetes, and juvenile arthritis: longitudinal results.

PubMed

Otto, Christiane; Barthel, Dana; Klasen, Fionna; Nolte, Sandra; Rose, Matthias; Meyrose, Ann-Katrin; Klein, Marcus; Thyen, Ute; Ravens-Sieberer, Ulrike

2018-04-01

Health-related quality of life (HRQoL) is an important patient-reported outcome in clinical and health research. The EQ-5D-Y assesses child and adolescent HRQoL by five items on mobility, self-care, usual activities, pain/discomfort, and anxiety/depression as well as a visual analogue scale (VAS) on the current health state. This study investigates predictors of self-reported HRQoL according to the EQ-5D-Y in chronically ill children and adolescents using longitudinal data. Data from the German Kids-CAT study on children and adolescents with asthma, diabetes, and juvenile arthritis gathered over a period of six months were analyzed (n = 310; 7-17 years old; 48% female). Self-, parent-, and pediatrician-reported data were collected from June 2013 to October 2014. Generalized linear mixed models and linear mixed models served to examine effects of socio-demographic as well as disease- and health-specific predictors on the items as well as on the VAS of the EQ-5D-Y. Ceiling effects for the EQ-5D-Y indicated low burden of disease in the analyzed sample. Longitudinal analyses revealed associations between less health complaints and better HRQoL for all investigated HRQoL domains. Further, age- and gender-specific effects, and associations of better disease control, longer duration of the disease and less mental health problems with better HRQoL were found. Subjective health complaints and mental health problems should be considered in the care of children and adolescents with asthma, diabetes, and juvenile arthritis. Future research should suggest administering the items of the EQ-5D-Y with five instead of three response options, and investigate HRQoL over a longer period.

Illness Uncertainty and Illness Intrusiveness as Predictors of Depressive and Anxious Symptomology in College Students with Chronic Illnesses

ERIC Educational Resources Information Center

Mullins, Alexandria J.; Gamwell, Kaitlyn L.; Sharkey, Christina M.; Bakula, Dana M.; Tackett, Alayna P.; Suorsa, Kristina I.; Chaney, John M.; Mullins, Larry L.

2017-01-01

Objective: To examine predictors of psychological functioning in college students with chronic illnesses. Participants: Participants (N = 1413) included 364 students with self-reported diagnoses of asthma or allergies, 148 students with other chronic illnesses (eg, epilepsy, type 1 diabetes), and 901 healthy students. Data were collected between…

Increased prevalence of chronic physical health disorders in Australians with diagnosed mental illness.

PubMed

Scott, David; Burke, Karena; Williams, Susan; Happell, Brenda; Canoy, Doreen; Ronan, Kevin

2012-10-01

To compare chronic physical health disorder prevalence amongst Australian adults with and without mental illness. Total n=1,716 participants (58% female) with a mean age of 52 ± 13 years (range: 18 to 89 years) completed an online survey of Australian adults in 2010. Outcome measures including prevalence of chronic physical conditions and self-reported body mass index (BMI) in n=387 (23%) with a self-reported mental illness diagnosis were compared to respondents without mental illness. A significantly higher proportion of participants with mental illness were obese (BMI ≥ 30; 31 vs 24%, p=0.005). Adjusted odds ratios (OR) for coronary heart disease, diabetes, chronic bronchitis or emphysema, asthma, irritable bowel syndrome, and food allergies or intolerances (OR range: 1.54-3.19) demonstrated that chronic physical disorders were significantly more common in participants with a mental illness. Australian adults with a diagnosis for mental illness have a significantly increased likelihood of demonstrating chronic physical health disorders compared to persons without mental illness. Health professionals must be alert to the increased likelihood of comorbid chronic physical disorders in persons with a mental illness and should consider the adoption of holistic approaches when treating those with either a mental or physical illness. © 2012 The Authors. ANZJPH © 2012 Public Health Association of Australia.

Self-esteem of children and adolescents with chronic illness: a meta-analysis.

PubMed

Pinquart, M

2013-03-01

Chronic illness may be a risk factor for low self-esteem; however, previous meta-analyses are inconclusive whether children with a chronic illness have lower self-esteem than their healthy peers. The goal of the present study was to summarize available research in order to compare the self-esteem of children and adolescents with a chronic illness with that of healthy children. Random-effects meta-analysis was used to integrate the results of 621 empirical studies that compare levels of self-esteem of children with a chronic physical illness with healthy peers or general test norms. Studies were identified via the electronic databases Adolesc, Embase, Google Scholar, MEDLINE, PSNYDEX, PSYCINFO, and cross-referencing. Children with chronic illnesses have lower self-esteem than healthy peers or test norms (g = -0.18 standard deviation units). The lowest levels of self-esteem were observed in children with chronic fatigue syndrome and chronic headaches. Lower levels of self-esteem in children with a chronic illness were found in girls than in boys, in adolescents than in children, in children from developing or threshold countries, when results were collected from observer ratings rather than child reports, in studies published in the 1990s, and when children with chronic illnesses were directly compared with healthy children instead of test norms. Paediatricians, parents, and teachers should promote experiences of success and positive peer-relations, which are important sources of self-esteem. In addition, psychosocial interventions for children with chronic illnesses should be offered for children with reduced self-esteem. © 2012 Blackwell Publishing Ltd.

Cumulative stress pathophysiology in schizophrenia as indexed by allostatic load.

PubMed

Nugent, Katie L; Chiappelli, Joshua; Rowland, Laura M; Hong, L Elliot

2015-10-01

The etiopathophysiology of schizophrenia has long been linked to stress and the influence of stress is important in all stages of the illness. Previous examinations of perceived stress and acute stress responses may not capture this longitudinal stress pathophysiology. We hypothesized that the cumulative negative effects of stress, indexed by allostatic load (AL), would be elevated in schizophrenia, and that the AL paradigm would be relevant to our understanding of pathophysiology in schizophrenia. We assessed allostatic load in 30 patients with schizophrenia (SZ; mean age = 33; 17 males) and 20 healthy controls (HC; mean age = 35; 12 males) using 13 cardiovascular, metabolic, neuroendocrine and immune biomarkers. Participants' perceived stress over the past month, functional capacity and psychiatric symptoms were also measured. Controlling for age, SZ had significantly higher AL as compared to HC (p = 0.007). Greater AL was present in both early course and chronic SZ, and was associated with reduced functional capacity (p = 0.006) and more psychotic symptoms (p = 0.048) in SZ. Current level of perceived stress was not significantly elevated in SZ or associated with AL in either group. The higher AL found in SZ may reflect increased bodily "wear and tear", possibly caused by more chronic stress exposure or maladaptive responses to stress over time, although additional research is required to differentiate these causes. The higher AL is similarly present in early and chronic SZ, suggesting primary maladaptive stress physiology rather than secondary effects from medications or chronic illness. Copyright © 2015 Elsevier Ltd. All rights reserved.

Changes in Optimism Are Associated with Changes in Health Over Time Among Older Adults

PubMed Central

Chopik, William J.; Kim, Eric S.; Smith, Jacqui

2016-01-01

Little is known about how optimism differs by age and changes over time, particularly among older adults. Even less is known about how changes in optimism are related to changes in physical health. We examined age differences and longitudinal changes in optimism in 9,790 older adults over a four-year period. We found an inverted U-shaped pattern between optimism and age both cross-sectionally and longitudinally, such that optimism generally increased in older adults before decreasing. Increases in optimism over a four-year period were associated with improvements in self-rated health and fewer chronic illnesses over the same time frame. The findings from the current study are consistent with changes in emotion regulation strategies employed by older adults and age-related changes in well-being. PMID:27114753

Loneliness and Quality of Life in Chronically Ill Rural Older Adults

PubMed Central

Theeke, Laurie A.; Mallow, Jennifer

2015-01-01

Background Loneliness is a contributing factor to various health problems in older adults, including complex chronic illness, functional decline, and increased risk of mortality. Objectives A pilot study was conducted to learn more about the prevalence of loneliness in rural older adults with chronic illness and how it affects their quality of life. The purposes of the data analysis reported here were twofold: to describe loneliness, chronic illness diagnoses, chronic illness control measures, prescription medication use, and quality of life in a sample of rural older adults; and to examine the relationships among these elements. Methods A convenience sample of 60 chronically ill older adults who were community dwelling and living in Appalachia was assessed during face-to-face interviews for loneliness and quality of life, using the University of California, Los Angeles (UCLA) Loneliness Scale (version 3) and the CASP-12 quality of life scale. Chronic illness diagnoses, chronic illness control measures, and medication use data were collected through review of participants’ electronic medical records. Results Overall mean loneliness scores indicated significant loneliness. Participants with a mood disorder such as anxiety or depression had the highest mean loneliness scores, followed by those with lung disease and those with heart disease. Furthermore, participants with mood disorders, lung disease, or heart disease had significantly higher loneliness scores than those without these conditions. Loneliness was significantly related to total number of chronic illnesses and use of benzodiazepines. Use of benzodiazepines, diuretics, nitrates, and bronchodilators were each associated with a lower quality of life. Conclusions Nurses should assess for loneliness as part of their comprehensive assessment of patients with chronic illness. Further research is needed to design and test interventions for loneliness. PMID:23958674

The duality of health technology in chronic illness: how designers envision our future.

PubMed

Lehoux, Pascale

2008-06-01

This essay critically explores the role of technological innovation in the constitution of chronic states and illness. Drawing on the co-construction of technology and society perspective, it focuses more specifically on the way in which innovation designers envisage the enhancement of the chronically ill and build certain kinds of socio-technical configuration to deal with chronic illness. Using the case of ;intelligent distance patient monitoring' as an illustration, the paper argues that technology creates as much as it solves the problem of chronic illness. Technology is recursively embedded in chronic illness and it generates dual effects: it constrains and sustains users' daily practices. Only by recognizing technology's duality and eventually transcending it will research and policy initiatives be able to deal creatively and responsibly with the design of our future health experiences.

Arthritis symptoms, the work environment, and the future: measuring perceived job strain among employed persons with arthritis.

PubMed

Gignac, Monique A M; Sutton, Deborah; Badley, Elizabeth M

2007-06-15

To develop a measure of job strain related to differing aspects of working with arthritis and to examine the demographic, illness, work context, and psychosocial variables associated with it. Study participants were 292 employed individuals with osteoarthritis or inflammatory arthritis. Participants were from wave 3 of a 4-wave longitudinal study examining coping and adaptation efforts used to remain employed. Participants completed an interview-administered structured questionnaire, including a Chronic Illness Job Strain Scale (CIJSS) and questions on demographic (e.g., age, sex), illness and disability (e.g., disease type, pain, activity limitations), work context (e.g., job type, job control), and psychosocial variables (e.g., arthritis-work spillover, coworker/managerial support, job perceptions). Principal component analysis and multiple linear regression were used to analyze the data. A single factor solution emerged for the CIJSS. The scale had an internal reliability of 0.95. Greater job strain was reported for future uncertainty, balancing multiple roles, and difficulties accepting the disease than for current workplace conditions. Participants with inflammatory arthritis, more frequent severe pain, greater workplace activity limitations, fewer hours of work, less coworker support, and greater arthritis-work spillover reported greater job strain. The findings underscore the diverse areas that contribute to perceptions of job strain and suggest that existing models of job strain do not adequately capture the stress experienced by individuals working with chronic illnesses or the factors associated with job strain. Measures similar to the CIJSS can enhance the tools researchers and clinicians have available to examine the impact of arthritis in individuals' lives.

Psychological adjustment to IDDM: 10-year follow-up of an onset cohort of child and adolescent patients.

PubMed

Jacobson, A M; Hauser, S T; Willett, J B; Wolfsdorf, J I; Dvorak, R; Herman, L; de Groot, M

1997-05-01

To evaluate the psychological adjustment of young adults with IDDM in comparison with similarly aged individuals without chronic illness. An onset cohort of young adults (n = 57), ages 19-26 years, who have been followed over a 10-year period since diagnosis, was compared with a similarly aged group of young adults identified at the time of a moderately severe, acute illness (n = 54) and followed over the same 10-year period. The groups were assessed at 10-year follow-up in terms of 1) sociodemographic indices (e.g., schooling, employment, delinquent activities, drug use), 2) psychiatric symptoms, and 3) perceived competence. In addition, IDDM patients were examined for longitudinal change in adjustment to diabetes. The groups differed only minimally in terms of sociodemographic indices, with similar rates of high school graduation, post-high school education, employment, and drug use. The IDDM group reported fewer criminal convictions and fewer non-diabetes-related illness episodes than the comparison group. There were no differences in psychiatric symptoms. However, IDDM patients reported lower perceived competence, with specific differences found on the global self-worth, sociability, physical appearance, being an adequate provider, and humor subscales. The IDDM patients reported improving adjustment to their diabetes over the course of the 10-year follow-up. Overall, the young adults with IDDM appeared to be as psychologically well adjusted as the young adults without a chronic illness. There were, however, indications of lower self-esteem in the IDDM patients that could either portend or predispose them to risk for future depression or other difficulties in adaptation.

The Use of Self-Care Agency To Meet the Need for Solitude and Social Interaction by Chronically Ill Individuals.

ERIC Educational Resources Information Center

Burns, Margaret A.

This study examined the effect of chronic illness on the individual's ability to meet his or her need for solitude and for social interaction by exploring how chronically ill individuals used their own ability (self-care agency) to meet these needs. Subjects were 90 chronically ill older persons, 30 of whom were living at home, 30 who lived in a…

Cultural expressions of bodily awareness among chronically ill Filipino Americans.

PubMed

Becker, Gay

2003-01-01

To describe Filipino Americans' cultural traditions surrounding bodily awareness, especially how the principle of balance informs their views, and the link to self-management of chronic illness. This qualitative study used semistructured interviews with 85 Filipino Americans between the ages of 46 and 97 years. Volunteers were recruited from numerous health care sites in 1 geographic location in the United States. Respondents had 1 or more chronic illnesses. Taped and transcribed interviews were coded and evaluated for themes. The concept of balance was central to Filipino Americans' portrayal of bodily awareness of signs and symptoms related to chronic illnesses, as well as to actions they took to manage their chronic illnesses. Efforts were made to control chronic illnesses through a variety of self-care practices. Diet posed a particular challenge because of the symbolic importance of food in Filipino culture and its use in the maintenance of social relationships. The ways in which Filipino Americans combine attention to the body, values of balance and harmony, and emphasis on social well-being result in heightened attention to bodily processes. Filipino Americans' emphasis on bodily awareness suggests that this particular cultural strength can be used to enhance chronic illness management. Awareness of the cultural traditions of Filipino Americans can facilitate patient education about how to manage chronic illnesses.

Parental Involvement of Mothers with Chronic Illness and Children's Academic Achievement

ERIC Educational Resources Information Center

Chen, Yung-Chi; Fish, Marian C.

2013-01-01

This study examined how maternal chronic illnesses may affect children's academic achievement through parental involvement. A total of 189 mothers diagnosed with chronic illnesses, such as multiple sclerosis, diabetes, cancer, HIV/AIDS, chronic pain, asthma, myelodysplasic syndrome, and fibromyalgia, and with a child in middle school or high…

Persistent inflammation, immunosuppression, and catabolism and the development of chronic critical illness after surgery.

PubMed

Efron, Philip A; Mohr, Alicia M; Bihorac, Azra; Horiguchi, Hiroyuki; Hollen, McKenzie K; Segal, Mark S; Baker, Henry V; Leeuwenburgh, Christiaan; Moldawer, Lyle L; Moore, Frederick A; Brakenridge, Scott C

2018-05-25

As early as the 1990s, chronic critical illness, a distinct syndrome of persistent high-acuity illness requiring management in the ICU, was reported under a variety of descriptive terms including the "neuropathy of critical illness," "myopathy of critical illness," "ICU-acquired weakness," and most recently "post-intensive care unit syndrome." The widespread implementation of targeted shock resuscitation, improved organ support modalities, and evidence-based protocolized ICU care has resulted in significantly decreased in-hospital mortality within surgical ICUs, specifically by reducing early multiple organ failure deaths. However, a new phenotype of multiple organ failure has now emerged with persistent but manageable organ dysfunction, high resource utilization, and discharge to prolonged care facilities. This new multiple organ failure phenotype is now clinically associated with the rapidly increasing incidence of chronic critical illness in critically ill surgery patients. Although the underlying pathophysiology driving chronic critical illness remains incompletely described, the persistent inflammation, immunosuppression, and catabolism syndrome has been proposed as a mechanistic framework in which to explain the increased incidence of chronic critical illness in surgical ICUs. The purpose of this review is to provide a historic perspective of the epidemiologic evolution of multiple organ failure into persistent inflammation, immunosuppression, and catabolism syndrome; describe the mechanism that drives and sustains chronic critical illness, and review the long-term outcomes of surgical patients who develop chronic critical illness. Copyright © 2018 Elsevier Inc. All rights reserved.

Resilience in the face of serious illness among chronically ill African Americans in later life.

PubMed

Becker, Gay; Newsom, Edwina

2005-07-01

The purpose of this work was to examine older African Americans' philosophies about their chronic illnesses and how those philosophies affected chronic illness management. Three to five in-depth interviews were conducted over the course of several years with 38 respondents between the ages of 65 and 91. Both open-ended and semistructured questions were asked. Respondents demonstrated determination, perseverance, and tenacity no matter how serious their illnesses were. Racism was instrumental in shaping the responses of these African Americans to their illnesses through cultural values that emphasized independence, spirituality, and survival. Respondents demonstrated a resilient philosophy as they faced disabling illness. This research attests to the importance of examining racism in the analysis of how older ethnic minorities live with chronic illness, as it provides the context for understanding the development of culturally specific philosophies about illness. Resilience, as a culturally specific philosophy, is an important adjunct to chronic illness management in later life, and more needs to be understood about the dimensions that shape it by cultural group.

Material deprivation and health: a longitudinal study.

PubMed

Tøge, Anne Grete; Bell, Ruth

2016-08-08

Does material deprivation affect the consequences of ill health? Answering this question requires that we move beyond the effects of income. Longitudinal data on material deprivation, longstanding illness and limiting longstanding illness enables investigations of the effects of material deprivation on risk of limiting longstanding illness. This study investigates whether a shift from affording to not affording a car predicts the probability of limiting longstanding ill (LLSI). The 2008-2011 longitudinal panel of Statistics on Income, Social Inclusion and Living Conditions (EU-SILC) is utilised. Longitudinal fixed effects logit models are applied, using LLSI as dependent variable. Transition from affording a car to not affording a car is used as a proxy for material deprivation. All models are controlled for whether the person becomes longstanding ill (LSI) as well as other time-variant covariates that could affect the results. The analysis shows a statistically significant increased odds ratio of LLSI when individuals no longer can afford a car, after controlling for confounders and LSI in the previous year (1.129, CI = 1.022-1.248). However, when restricting the sample to observations where respondents report longstanding illness the results are no longer significant (1.032, CI = 0.910-1.171). The results indicate an individual level effect of material deprivation on LLSI, suggesting that material resources can affect the consequences of ill health.

Illness cognitions as a pathway between religiousness and subjective health in chronic cardiac patients.

PubMed

Karademas, Evangelos C

2010-03-01

The aim of this study was to examine the role of illness cognitions as a possible pathway between religiousness and subjective health in chronic illness. A sample of 135 chronic cardiac patients completed questionnaires about intrinsic religiousness, frequency of church service attendance, basic illness cognitions (i.e., helplessness, illness acceptance, perceived benefits), and physical and emotional well-being. According to the results, religiousness was significantly associated with subjective health. However, this relationship was indirect, with helplessness and illness acceptance serving as mediators between intrinsic religiousness and health. This finding is significant for understanding the complex relation of religiousness to chronic patients' well-being.

Evaluation of a family systems intervention for managing pediatric chronic illness: Mastering Each New Direction (MEND).

PubMed

Distelberg, Brian; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne; Pandit, Mayuri

2014-06-01

Family systems play a crucial, albeit complex, role in pediatric chronic illness. Unfortunately, very few psychosocial interventions are available to help these stressed families navigate the developmental steps of chronic illness. A new intervention (MEND) addresses the needs of these families and applies to a broad range of chronic illnesses. This article presents this family systems intervention as well as includes preliminary program evaluation data on 22 families that graduated from the program. Results show consistently strong effects across an array of psychosocial measures. Conclusions from this preliminary study suggest that families entering MEND present with high levels of stress due to the child's chronic illness, but after MEND, the level of stress and other functioning measures are comparable to those seen in healthy families, suggesting that the program offers a significant benefit to families with pediatric chronic illness. © 2014 FPI, Inc.

Evaluation of a Family Systems Intervention for Managing Pediatric Chronic Illness: Mastering Each New Direction (MEND)

PubMed Central

Distelberg, Brian; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne; Pandit, Mayuri

2015-01-01

Family systems play a crucial, albeit complex, role in pediatric chronic illness. Unfortunately, very few psychosocial interventions are available to help these stressed families navigate the developmental steps of chronic illness. A new intervention (MEND) addresses the needs of these families and applies to a broad range of chronic illnesses. This article presents this family systems intervention as well as includes preliminary program evaluation data on 22 families that graduated from the program. Results show consistently strong effects across an array of psychosocial measures. Conclusions from this preliminary study suggest that families entering MEND present with high levels of stress due to the child's chronic illness, but after MEND, the level of stress and other functioning measures are comparable to those seen in healthy families, suggesting that the program offers a significant benefit to families with pediatric chronic illness. PMID:24635346

Social behaviour and illness information interact to influence the peer acceptance of children with chronic illness.

PubMed

Alderfer, M A; Wiebe, D J; Hartmann, D P

2001-09-01

Social behaviour was investigated as a contributor to the peer acceptance of children with chronic illness. We predicted that children with illness would receive less acceptance than children without illness, and that prosocial behaviour would improve acceptance, while aggressive behaviour would hamper it. Based upon attribution and cognitive bias theories, we also predicted that prosocial behaviour would be more beneficial and aggressive behaviour less damaging to the acceptance of children with illness compared to healthy children. A 3 (social behaviour: prosocial, aggressive, no information) x 2 (physical status: chronically ill, healthy) within-subjects analogue design was used. Preadolescents (N = 149) indicated social acceptance of hypothetical children portrayed in vignettes as either chronically ill or healthy with prosocial, aggressive, or no social behaviour. A 13-item social intentions scale gauged acceptance. The hypotheses were supported. Although children described as ill received lower acceptance ratings than healthy children, prosocial/ill children were more accepted than aggressive/ill children. Social behaviour interacted with physical status to affect acceptance. Social behaviour influences the peer acceptance of hypothetical children with chronic illness. Prosocial behaviour enhances acceptance of children described with illness, while aggressive behaviour hampers it. Additionally, prosocial behaviour is more beneficial, and aggressive behaviour is less damaging for children described as ill versus healthy. The potential processes by which peers judge acceptance of children with illness are discussed.

Suicidal Behaviour Among Adolescents and Young Adults with Self-Reported Chronic Illness.

PubMed

Ferro, Mark A; Rhodes, Anne E; Kimber, Melissa; Duncan, Laura; Boyle, Michael H; Georgiades, Katholiki; Gonzalez, Andrea; MacMillan, Harriet L

2017-12-01

The aims of this study were to estimate the: (1) 12-mo prevalence of suicidal thoughts, plans, and attempts in a population sample of adolescents and young adults with and without chronic illness; (2) associations among chronic illness and suicidal thoughts and behaviour (STB); and, (3) moderating roles of mood and substance use disorder on this association. Individuals were aged 15 to 30 y ( n = 5,248) from the Canadian Community Health Survey-Mental Health. Twelve-month STB and psychiatric disorder were measured using the World Health Organization Composite International Diagnostic Interview 3.0. Multinomial logistic regression examined associations between chronic illness and STB, adjusting for relevant sociodemographic and health characteristics. Product term interactions among chronic illness, mood, and substance use disorders were included in the regression models to examine potential moderating effects. Prevalence of suicidal thoughts, plans, and attempts was higher in individuals with chronic illness ( P < 0.01 for all). After adjustment, chronic illness increased the odds for suicidal thoughts [OR = 1.28 (1.01 to 1.64)], plans [OR = 2.34 (1.22 to 4.39)], and attempts [OR = 4.63 (1.52 to 14.34)]. In the presence v. absence of a mood disorder, the odds for suicidal thoughts were higher among individuals with chronic illness [OR = 1.89 (1.06 to 5.28)]. Suicidal thoughts and behaviours are common among adolescents and young adults with chronic illness, particularly among those with comorbid mood disorders. Health professionals should routinely ask about STB during assessments of their adolescent and young adult patients.

Interpretation of change and longitudinal validity of the quality of life for respiratory illness questionnaire (QoLRIQ) in inpatient pulmonary rehabilitation.

PubMed

van Stel, Henk F; Maillé, A Rianne; Colland, Vivian T; Everaerd, Walter

2003-03-01

The quality of life for respiratory illness questionnaire (QoLRIQ) is an outcome measure for patients with asthma or chronic obstructive pulmonary disease (COPD). This study assessed the longitudinal validity, reliability of the change score and the interpretation of changes on the QoLRIQ in inpatient pulmonary rehabilitation, completed by 108 patients with moderate to severe asthma (39) or COPD (69). Domains and total score of the QoLRIQ changed significant (all p < 0.0002) with standardized response means from 0.46 to 0.90. All QoLRIQ-change scores were significantly correlated with self-rated change in health and in disease symptoms and with change in self-assessed health status (r from 0.2 to 0.61). There were several significant correlations between QoLRIQ-change scores and change in experienced invalidity, emotional well-being, anxiety, depressive symptoms and Rand-36-domains (r from 0.2 to 0.68). The intraclass correlation coefficient of change was 0.90. The size of a minimal important difference (MID), computed from a retrospective global rating of change by the patients and with the standard error of measurement, was 0.5 points on a 7-point response scale. Computation of the MID from retrospective assessment of change may not be valid because this change was significantly correlated to post-treatment health status and significantly higher than serial assessment of change. We conclude that the QoLRIQ is sensitive to change, longitudinally valid and reliable, with a MID of 0.5 points. These results enable the use of the QoLRIQ as an outcome measure in clinical trials with patients with moderate to severe asthma or COPD. The longitudinal measurement properties in less severe patients still need to be studied.

Predictors of health-related quality of life in chronically ill children and adolescents over time.

PubMed

Barthel, D; Ravens-Sieberer, U; Nolte, S; Thyen, U; Klein, M; Walter, O; Meyrose, A-K; Rose, M; Otto, C

2018-06-01

This study aims at identifying predictors of generic health-related quality of life (HRQoL) in chronically ill children and adolescents over time. The newly developed computer-adaptive test Kids-CAT was used to assess five dimensions of HRQoL. Longitudinal data from the Kids-CAT study on children and adolescents with asthma, diabetes and juvenile arthritis (n = 248; aged 7-17 years) were assessed at three measurement points over six months. Individual growth modeling served to investigate effects of sociodemographic, disease- and health-related as well as psychosocial factors on HRQoL dimensions Physical Well-Being (WB), Psychological WB, Parent Relations, Social Support & Peers, and School WB over time. Besides effects of sociodemographic variables on HRQoL dimensions Social Support & Peers as well as School WB, we found that a longer duration of the disease was associated with better Physical WB. Lower scores were found for patients with juvenile arthritis compared to those with diabetes in HRQoL dimensions Physical WB and Social Support & Peers. Disease control was positively related to Physical and Psychological WB over time. Mental health problems were negatively associated with four, and subjective health complaints with all five HRQoL dimensions over time. Parental mental health was positively related to the patients' HRQoL score in Parent Relations over time. HRQoL as a multidimensional construct is associated with a wide range of different factors. Pediatricians should consider potential mental health problems and subjective health complaints in their patients. Finally, parental HRQoL can affect HRQoL in chronically ill children and adolescents. Copyright © 2018 Elsevier Inc. All rights reserved.

Autism spectrum symptoms in children with neurological disorders.

PubMed

Ryland, Hilde K; Hysing, Mari; Posserud, Maj-Britt; Gillberg, Christopher; Lundervold, Astri J

2012-11-12

The aims of the present study were to assess symptoms associated with an autism spectrum disorder (ASD) in children with neurological disorders as reported by parents and teachers on the Autism Spectrum Screening Questionnaire (ASSQ), as well as the level of agreement between informants for each child. The ASSQ was completed by parents and teachers of the 5781 children (11-13 years) who participated in the second wave of the Bergen Child Study (BCS), an on-going longitudinal population-based study. Out of these children, 496 were reported to have a chronic illness, including 99 whom had a neurological disorder. The neurological disorder group included children both with and without intellectual disabilities. Children with neurological disorders obtained significantly higher parent and teacher reported ASSQ scores than did non-chronically ill children and those with other chronic illnesses (p<.01; ES = .50-1.01), and 14.1% were screened above the positive cutoff score for ASD according to their combined parent and teacher ASSQ scores. Parent/teacher agreement over ASSQ scores for children with neurological disorders was moderate to high for the total score and for three sub scores generated from a factor analysis, and low to moderate for single items. The ASSQ identifies a high rate of ASD symptoms in children with neurological disorders, and a large number of children screened in the positive range for ASD. Although a firm conclusion awaits further clinical studies, the present results suggest that health care professionals should be aware of potential ASD related problems in children with neurological disorders, and should consider inclusion of the ASSQ or similar screening instruments as part of their routine assessment of this group of children.

The work of negotiating HIV as a chronic condition: a qualitative analysis.

PubMed

Thompson, Lee; Abel, Gillian

2016-12-01

Living with human immunodeficiency virus (HIV) in the industrialised world has for over a decade been conceptualised as living with a chronic illness. People living with HIV now are amongst the first to live and age with the virus. Drawing on a qualitative longitudinal study in a low-incidence area in a low-incidence country, this paper investigates the nuanced ways that people negotiate this condition. While it has been argued that HIV is a condition like any other chronic disease, our thematic analysis reveals some similarities and particularities around living with the condition. In comparing themselves to others with the condition, high levels of diversity of experience were identified that extended well beyond length of time from diagnosis. In comparing their illness with other illnesses, the location, for example, of their specialist service within a clinic for those with acute sexually transmitted diseases was identified as problematic. The work involved in maintaining a coherent sense of self in the face of existing and shifting challenges as a result of their infection was a second strong theme. The final theme involved flux and flex work in the ways people sought to gain and maintain control over various aspects of their lives. All of these experiences are mediated by place; that is the experience is not the same as that of those who live where there is a much higher incidence of infection. The work involved in negotiating this condition in low-incidence environments deserves more attention, but aspects of these findings are significant in higher incidence contexts as well; in particular, passivity in face of infection as one ages and the potential for medication refusal as a means of maintaining control over life and death.

Illness Identity in Adults with a Chronic Illness.

PubMed

Oris, Leen; Luyckx, Koen; Rassart, Jessica; Goubert, Liesbet; Goossens, Eva; Apers, Silke; Arat, Seher; Vandenberghe, Joris; Westhovens, René; Moons, Philip

2018-02-21

The present study examines the concept of illness identity, the degree to which a chronic illness is integrated into one's identity, in adults with a chronic illness by validating a new self-report questionnaire, the Illness Identity Questionnaire (IIQ). Self-report questionnaires on illness identity, psychological, and physical functioning were assessed in two samples: adults with congenital heart disease (22-78 year old; n = 276) and with multisystem connective tissue disorders (systemic lupus erythematosus or systemic sclerosis; 17-81 year old; n = 241). The IIQ could differentiate four illness identity states (i.e., engulfment, rejection, acceptance, and enrichment) in both samples, based on exploratory and confirmatory factor analysis. All four subscales proved to be reliable. Rejection and engulfment were related to maladaptive psychological and physical functioning, whereas acceptance and enrichment were related to adaptive psychological and physical functioning. The present findings underscore the importance of the concept of illness identity. The IIQ, a self-report questionnaire, is introduced to measure four different illness identity states in adults with a chronic illness.

The Impact of Chronic Illness on Psychosocial Stages of Human Development.

ERIC Educational Resources Information Center

Lapham, E. Virginia, Ed.; Shevlin, Kathleen M., Ed.

This book addresses critical issues regarding the impact of chronic illness and disability on human development. It was written for health care professionals who help chronically ill and disabled persons deal with the psychological and social as well as the biological aspects of their illness or disability. An expanded version of Erik Erikson's…

Chronic illness histories of adults entering treatment for co-occurring substance abuse and other mental health disorders.

PubMed

Chesher, Nicholas J; Bousman, Chad A; Gale, Maiken; Norman, Sonya B; Twamley, Elizabeth W; Heaton, Robert K; Everall, Ian P; Judd, Patricia A

2012-01-01

Little is known about the medical status of individuals entering treatment for co-occurring substance abuse and other mental disorders (COD). We analyzed the medical histories of 169 adults entering outpatient treatment for CODs, estimating lifetime prevalence of chronic illness and current smoking, comparing these rates to the general population, and examining psychiatric and substance-related correlates of chronic illness. Results revealed significantly higher prevalence of hypertension, asthma, arthritis, and smoking compared to the general US population, and showed an association between chronic illness and psychiatric symptom distress and substance use severity. Findings support integration of chronic illness management into COD treatment.  Copyright © American Academy of Addiction Psychiatry.

Families living with chronic illness: beliefs about illness, family, and health care.

PubMed

Årestedt, Liselott; Benzein, Eva; Persson, Carina

2015-05-01

Beliefs can be described as the lenses through which we view the world. With emerging illness, beliefs about the illness experience become important for nurses to understand to enhance well-being and healing. The aim of this study was to illuminate illness beliefs of families living with chronic illness. A qualitative design was chosen, including repeated narrative research interviews with seven Swedish families living with chronic illness. Hermeneutic analysis was used to interpret the transcribed family interviews. The result described beliefs in families, both within and across families. Both core beliefs and secondary beliefs about illness, family, and health care were revealed. Illness beliefs have importance for how families respond to and manage situations that arise from their encounters with illness. Nurses have to make space for and listen to families' stories of illness to become aware of what beliefs may support and encourage family well-being and healing. The Illness Beliefs Model provides a touchstone whereby nurses can distinguish both individual and shared beliefs within families living with chronic illness and provide ideas for family intervention if needed. © The Author(s) 2015.

Medicaid programme changes and the chronically ill: early results from a prospective cohort study of the Oregon Health Plan.

PubMed

Solotaroff, Rachel; Devoe, Jennifer; Wright, Bill J; Smiths, Jeanene; Boone, Janne; Edlund, Tina; Carlson, Matthew J

2005-09-01

To describe the impacts of recent Oregon Health Plan (OHP) policy changes on individuals living with chronic illness in Oregon. A mail survey was conducted of 1374 OHP beneficiaries who were directly affected by the new policies. The analyses reported in this article represent baseline findings from the first of three survey waves in an ongoing prospective cohort study. A significant association was found between Medicaid policy changes and high rates of disenrolment from the OHP. Compared to the non-chronically ill, the chronically ill were more likely to report inability to pay for medications, higher medical debt, more unmet health needs, and poorer health status. Among the chronically ill, those who lost insurance reported decreased access to and utilization of healthcare, more medical debt, and more restriction of medications. As policy-makers restructure public programmes to accommodate tight budgets and rising healthcare costs, people with chronic illness can easily be overlooked. Chronically ill individuals face disproportionate financial and health burdens. Small cost-saving policy changes can lead to widespread disenrolment that cascades into reduced access to healthcare services, altered utilization patterns, and financial strain.

Co-occurring mental illness and health care utilization and expenditures in adults with obesity and chronic physical illness.

PubMed

Shen, Chan; Sambamoorthi, Usha; Rust, George

2008-06-01

The objectives of the study were to compare health care expenditures between adults with and without mental illness among individuals with obesity and chronic physical illness. We performed a cross-sectional analysis of 2440 adults (older than age 21) with obesity using a nationally representative survey of households, the Medical Expenditure Panel Survey. Chronic physical illness consisted of self-reported asthma, diabetes, heart disease, hypertension, or osteoarthritis. Mental illness included affective disorders; anxiety, somatoform, dissociative, personality disorders; and schizophrenia. Utilization and expenditures by type of service (total, inpatient, outpatient, emergency room, pharmacy, and other) were the dependent variables. Chi-square tests, logistic regression on likelihood of use, and ordinary least squares regression on logged expenditures among users were performed. All regressions controlled for gender, race/ethnicity, age, martial status, region, education, employment, poverty status, health insurance, smoking, and exercise. All analyses accounted for the complex design of the survey. We found that 25% of adults with obesity and physical illness had a mental illness. The average total expenditures for obese adults with physical illness and mental illness were $9897; average expenditures were $6584 for those with physical illness only. Mean pharmacy expenditures for obese adults with physical illness and mental illness and for those with physical illness only were $3343 and $1756, respectively. After controlling for all independent variables, among adults with obesity and physical illness, those with mental illness were more likely to use emergency services and had higher total, outpatient, and pharmaceutical expenditures than those without mental illness. Among individuals with obesity and chronic physical illness, expenditures increased when mental illness is added. Our study findings suggest cost-savings efforts should examine the reasons for high utilization and expenditures for those with obesity, chronic physical illness, and mental illness.

Employment Barriers Among Welfare Recipients and Applicants With Chronically Ill Children

PubMed Central

Smith, Lauren A.; Romero, Diana; Wood, Pamela R.; Wampler, Nina S.; Chavkin, Wendy; Wise, Paul H.

2002-01-01

Objectives. This study evaluated the association of chronic child illness with parental employment among individuals who have had contact with the welfare system. Methods. Parents of children with chronic illnesses were interviewed. Results. Current and former welfare recipients and welfare applicants were more likely than those with no contact with the welfare system to report that their children’s illnesses adversely affected their employment. Logistic regression analyses showed that current and former receipt of welfare, pending welfare application, and high rates of child health care use were predictors of unemployment. Conclusions. Welfare recipients and applicants with chronically ill children face substantial barriers to employment, including high child health care use rates and missed work. The welfare reform reauthorization scheduled to occur later in 2002 should address the implications of chronic child illness for parental employment. PMID:12197972

Parent Preferences for Shared Decision-making in Acute Versus Chronic Illness.

PubMed

Tom, Dina M; Aquino, Christian; Arredondo, Anthony R; Foster, Byron A

2017-10-01

The goal of this study was to examine preferences for shared decision-making (SDM) in parents of acutely ill versus chronically ill children in the inpatient setting. Additionally, we explored the effect of parental perception of illness severity and uncertainty in illness on decision-making preference. In this cross-sectional study, we surveyed parents of children admitted to pediatric inpatient units at an academic, tertiary-care hospital. Surveys were administered in person and used validated tools to assess SDM preferences and uncertainty in illness. Descriptive statistics evaluated associations stratified by acute versus chronic illness, and multivariable analyses were performed. Of the 200 parents who participated, the majority were women (78%), Hispanic (81.5%), English speaking (73%), between 30 and 39 years old (37.5%), and had an education achievement of less than a college degree (77%). The mean age of hospitalized children was 8.1 years, and half reported a chronic illness. Most parents preferred an active (43%) or collaborative (40%) role in SDM. There was no association with SDM preference by demographics, number of previous hospitalizations, perception of illness severity, or uncertainty. However, parents of chronically ill children significantly preferred a passive role in SDM when they perceived a high level of uncertainty in illness. Most parents of hospitalized children prefer to take an active or collaborative role in SDM. However, parents of chronically ill children who perceive high levels of uncertainty surrounding their children's illness prefer a passive role, thus illustrating the complexity in decision-making among this parent population. Copyright © 2017 by the American Academy of Pediatrics.

A qualitative study examining health literacy and chronic illness self-management in Hispanic and non-Hispanic older adults

PubMed Central

Jacobs, Robin J; Ownby, Raymond L; Acevedo, Amarilis; Waldrop-Valverde, Drenna

2017-01-01

Purpose Chronic illness and low levels of health literacy affect health outcomes for many individuals, particularly older adults and racial/ethnic minorities. This study sought to understand the knowledge, strengths, and areas of need regarding self-management of chronic illness in order to lay the groundwork for content development of an intervention to increase health literacy and maximize patient engagement in chronic disease self-care. Patients and methods In-depth, qualitative interviews were conducted in Spanish and English with 25 older adults with various chronic illnesses. Topics included knowledge and understanding of chronic conditions, medications, and disease self-management skills. Qualitative data were coded by searching text and conducting cross-case analysis. An inductive analysis was then employed to allow for the patterns and themes to emerge. Results Emerged themes included 1) social support, 2) coping strategies, 3) spirituality, 4) chronic disease health literacy, 5) anger, and 6) depression. While participants had a general overall knowledge of chronic illness, they had deficits in knowledge regarding their own illnesses and medications. Conclusion Chronic illness self-management is a complex and dynamic behavioral process. This study identified themes that leverage patient motivation to engage in self-care in a personalized manner. This information will guide the development of an intervention to promote health literacy and optimal disease self-management. PMID:28461754

Perceived Stress in Chronic Illness: A Comparative Analysis of Four Diseases.

ERIC Educational Resources Information Center

Revenson, Tracey A.; Felton, Barbara J.

Most studies of stress and coping processes among patients with serious illnesses have focused on acute illness states. Far less research has involved systematic examination of the types and frequency of illness-related stresses experienced by individuals living with chronic illness. To compare the nature and degree of illness-related stress posed…

Living with a chronic illness - reaching out to others

MedlinePlus

... ency/patientinstructions/000602.htm Living with a chronic illness - reaching out to others To use the sharing ... illness. Talk with People Who Have the Same Illness Sharing with and learning from people who have ...

A Tool for Tracking and Assessing Chronic Illness Care in Prison (ACIC-P)

PubMed Central

Wang, Emily A.; Aminawung, Jenerius A.; Ferguson, Warren; Trestman, Robert; Wagner, Edward H.; Bova, Carol

2014-01-01

Chronic disease care is being transformed in correctional settings, given an aging inmate population, ongoing quality improvement efforts, litigation, and rising costs. The Chronic Care Model, established for chronic disease care in the community, might be a suitable framework to transform chronic disease care in prison, but it has not been systematically adapted for the correctional health care setting. We employed cognitive interviewing to adapt an extant survey used to measure the delivery of chronic illness care in the community, Assessment of Chronic Illness Care, for a prison setting. Results from the cognitive interviews and the modified Assessment of Chronic Illness Care–Prison (ACIC-P) instrument are presented in this article. Future studies will need to test the reliability and psychometric properties of the adapted ACIC-P. PMID:25117427

The impact of the housing crisis on self-reported health in Europe: multilevel longitudinal modelling of 27 EU countries

PubMed Central

Reeves, Aaron; Loopstra, Rachel; McKee, Martin; Dorling, Danny; Stuckler, David

2016-01-01

Background: Many EU nations experienced a significant housing crisis during the Great Recession of 2008–10. We evaluated the consequences of housing payment problems for people’s self-reported overall health. Methods: We used longitudinal data from the EU Statistics on Income and Living Conditions survey covering 27 countries from 2008 to 2010 to follow a baseline sample of persons who did not have housing debt and who were employed (45 457 persons, 136 371 person–years). Multivariate linear regression and multilevel models were used to evaluate the impact of transitions into housing arrears on self-reported health, correcting for the presence of chronic illness, health limitations, and other potential socio-demographic confounders. Results: Persons who transitioned into housing arrears experienced a significant deterioration in self-reported overall health by − 0.03 U (95% CI − 0.01 to − 0.04), even after correcting for chronic illness, disposable income and employment status, and individual fixed effects. This association was independent and similar in magnitude to that for job loss (−0.02, 95% CI: −0.01 to − 0.04). We also found that the impact of housing arrears was significantly worse among renters, corresponding to a mean 0.11 unit additional drop in health as compared with owner-occupiers. These adverse associations were only evident in persons below the 75th percentile of disposable income. Discussion: Our analysis demonstrates that persons who suffer housing arrears experience increased risk of worsening self-reported health, especially among those who rent. Future research is needed to understand the role of alternative housing support systems and available strategies for preventing the health consequences of housing insecurity. PMID:27221606

Responding to Students' Chronic Illnesses

ERIC Educational Resources Information Center

Shaw, Steven R.; Glaser, Sarah E.; Stern, Melissa; Sferdenschi, Corina; McCabe, Paul C.

2010-01-01

Chronic illnesses are long-term or permanent medical conditions that have recurring effects on everyday life. Large and growing number of students have chronic illnesses that affect their emotional development, physical development, academic performance, and family interactions. The primary error in educating those students is assuming that the…

Normalization behaviours of rural fathers living with chronically-ill children: an Australian experience.

PubMed

Peck, Blake; Lillibridge, Jennifer

2005-03-01

This article reports findings from a larger qualitative study conducted to gain insight into the experience of fathers living with their chronically-ill children in rural Victoria, Australia. Data were collected via unstructured interviews with four fathers. The findings presented in this article explore the phenomena of normalization for fathers within the chronic illness experience. Fathers described normalizing the experience of living with their chronically-ill child as involving a combination of various coping strategies and behaviours including: (1) accepting the child's condition, (2) changing expectations, (3) focusing energies on a day-to-day basis, (4) minimizing knowledge-seeking behaviours, and (5) engaging in external distraction activities. Findings highlight the complex and unique normalization strategies these men utilized and contribute to knowledge and understanding of the complex nature of raising a chronically-ill child in rural Australia and provide a sound basis upon which to guide an ongoing and holistic assessment of fathers with chronically-ill children.

The relationship between hope and patient activation in consumers with schizophrenia: Results from longitudinal analyses.

PubMed

Oles, Sylwia K; Fukui, Sadaaki; Rand, Kevin L; Salyers, Michelle P

2015-08-30

Hope (goal-directed thinking) and patient activation (knowledge and skills to manage one's illness) are both important in managing chronic conditions like schizophrenia. The relationship between hope and patient activation has not been clearly defined. However, hope may be viewed as a foundational, motivating factor that can lead to greater involvement in care and feelings of efficacy. The purpose of the present study was to understand the prospective relationship between hope and patient activation in a sample of adults with schizophrenia (N=118). This study was a secondary data analysis from a study on Illness Management and Recovery (IMR) - a curriculum-based approach to schizophrenia self-management. Data were collected at baseline (prior to any intervention), and at 9 and 18-month follow-up. As predicted, hope and patient activation were significantly related with each other, showing large positive concurrent correlations. Demographics and background characteristics were not significantly related to patient activation or hope. Longitudinal analyses found no specific directional effect, yet suggested that hope and patient activation mutually influence each other over time. Our findings add flexibility in designing recovery-based interventions - fostering hope may not be a pre-requisite for activating consumers to be more involved in their own care. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Chronic physical conditions in older adults with mental illness and/ or substance use disorders.

PubMed

Lin, Wen-Chieh; Zhang, Jianying; Leung, Gary Y; Clark, Robin E

2011-10-01

To examine the association between mental illness and chronic physical conditions in older adults and investigate whether co-occurring substance use disorders (SUDs) are associated with greater risk of chronic physical conditions beyond mental illness alone. A retrospective cross-sectional study. Medicare and Medicaid programs in Massachusetts. Massachusetts Medicare and Medicaid members aged 65 and older as of January 1, 2005 (N = 679,182). Diagnoses recorded on Medicare and Medicaid claims were used to identify mental illness, SUDs, and 15 selected chronic physical conditions. Community-dwelling older adults with mental illness or SUDs had higher adjusted risk for 14 of the 15 selected chronic physical conditions than those without these disorders; the only exception was eye diseases. Moreover, those with co-occurring SUDs and mental illness had the highest adjusted risk for 11 of these chronic conditions. For residents of long-term care facilities, mental illness and SUDs were only moderately associated with the risk of chronic physical conditions. Community-dwelling older adults with mental illness or SUDs, particularly when they co-occurred, had substantially greater medical comorbidity than those without these disorders. For residents of long-term care facilities, the generally uniformly high medical comorbidity may have moderated this relationship, although their high prevalence of mental illness and SUDs signified greater healthcare needs. These findings strongly suggest the imminent need for integrating general medical care, mental health services, and addiction health services for older adults with mental illness or SUDs. © 2011, Copyright the Authors Journal compilation © 2011, The American Geriatrics Society.

Retrospective chart review of obesity and episodic and chronic illness among rural Mexican-American adolescents accessing rural health clinic services.

PubMed

Champion, Jane Dimmitt; Pierce, Sherrie; Collins, Jennifer L

2015-06-01

Obesity impacts the physical and psychological health of children and adolescents, and is a risk factor for development of episodic and chronic illness. Rural Mexican-American adolescents are at risk for obesity and associated chronic illnesses.The study used a retrospective chart review of data collected routinely in a rural health clinic setting from 1 January 2005 to 31 December 2010 to assess incidence of overweight/obesity status and episodic or chronic illness among Mexican-American adolescents aged 12-18 years. Analyses included body mass index, age, gender, and episodic or chronic illness diagnoses. Two hundred twelve charts were audited; women (n = 114, 53.8%), men (n = 98 46.2%); normal (n = 105, 49.5%), overweight/obese (n = 107, 50.5%). There were more female normal (n = 61, 53.5%) vs. overweight/obese (n = 53, 46.5%). More male overweight/obese (n = 54, 55.1%) than normal weight (n = 44, 44.9%). Age at first documented overweight/obesity status occurred in early adolescence (median = 13 years, mode = 12 years). Chronic illness incidence was higher among men than women, and overweight/obese vs. normal weight adolescents and in sub-categorizations by weight and specific illness. Incidence of episodic illness was higher among women than men, with variation by weight and specific illness. Disproportionately high incidence of episodic or chronic illness and overweight/obesity identified among rural Mexican-American adolescents compels intervention modification to improve effectiveness. © 2014 Wiley Publishing Asia Pty Ltd.

"My Child Is Not an Illness": Mothers as Advocates for Pedagogy and Policies for Chronically Ill Students

ERIC Educational Resources Information Center

Katzman, Lauren

2013-01-01

On a national level, there is no answer in the law about identifying and servicing chronically ill students. Because the national definitions and requirements are ambiguous, the local policies are also unclear. The purpose of this study was to analyze the stories told by mothers about their children who suffer from chronic illness in order to help…

Parental availability for the care of sick children.

PubMed

Heymann, S J; Earle, A; Egleston, B

1996-08-01

Parents have always played a critical role in the care of sick children. Although parents' roles remain crucial to children's health, parental availability has declined during the past half century. The percentage of women with preschool children who work has risen almost fivefold in 45 years from 12% in 1947 to 58% in 1992. The percentage of women in the paid work force with school-aged children has almost tripled in the same period, from 27.3% to 75.9%. Research has examined the effects of a variety of parental work conditions on children. However, past research has not examined how working conditions affect the ability of parents to care for their sick children. In this article, we examine how often the children of working parents get sick and whether parents receive enough paid leave to care for their sick children. This analysis makes use of two national surveys, which provide complementary information regarding the care of sick children. The National Longitudinal Survey of Youth is a longitudinal survey of a nationally representative probability sample of 12,686 men and women; the National Medical Expenditure Survey is a panel survey of 34,459 people. First, we estimated the family illness burden. Second, we looked in detail at the number of days of sick leave mothers had. Third, we examined whether mothers who had sick leave had it consistently during a 5-year period. Finally, we conducted a logistic regression to determine what factors were significant predictors of both lacking sick leave. More than one in three families faced a family illness burden of 2 weeks or more each year. Yet, 28% of mothers had sick leave none of the time they were employed between 1985 and 1990. Employed mothers of children with chronic conditions had less sick leave than other employed mothers. Thirty-six percent of mothers whose children had chronic conditions had sick leave none of the time they were employed. Although 20% of working parents who did not live in poverty lacked sick leave, 38% of parents who did live in poverty lacked sick leave. The problem is also more marked for nonwhite parents. Although 23% of working white parents lacked paid sick leave, 31% of nonwhite parents lacked sick leave. One in six families that lacked sick leave had to cover for more than 4 weeks of family illness during the year. In 1993, the US Congress passed the Family and Medical Leave Act (FMLA). However, by limiting the medical leave to the care of major illnesses, primarily those requiring hospitalization, the FMLA does not address the majority of children's sick care needs. For the common childhood illnesses that are not covered by the FMLA, employed parents often must rely on their sick leave if they are to care for their sick children themselves. Yet, we found that many employed parents lack sick leave. This is particularly true of parents of children with chronic conditions and poor and minority families.

Single parents of children with chronic illness: an understudied phenomenon.

PubMed

Brown, Ronald T; Wiener, Lori; Kupst, Mary Jo; Brennan, Tara; Behrman, Richard; Compas, Bruce E; David Elkin, T; Fairclough, Diane L; Friebert, Sarah; Katz, Ernest; Kazak, Anne E; Madan-Swain, Avi; Mansfield, Nancy; Mullins, Larry L; Noll, Robert; Patenaude, Andrea Farkas; Phipps, Sean; Sahler, O J; Sourkes, Barbara; Zeltzer, Lonnie

2008-05-01

To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness. We conducted literature reviews of relevant research pertaining to single-parent families on PubMed, Medline, and PsychINFO and also surveyed pertinent book chapters and all of the articles from the Journal of Pediatric Psychology since 1987 for articles, specifically examining the potential associations of single (lone) parenting versus two-parent households on children's psychosocial functioning and the impact of the child's illness on caregiver functioning. While the literature has examined and discussed the stressors associated with parenting a child with an illness, including the impact of illness on finances, family roles, and caregiver burden, few studies have examined single parents of children and adolescents with chronic illnesses and related stressors stemming from being a lone caregiver. There is a dearth of studies examining the association between lone parenting and psychosocial functioning among children and adolescents with chronic illnesses. Specific questions necessitating future investigation are summarized and recommendations are made for future research in this important area of inquiry.

A tool for tracking and assessing chronic illness care in prison (ACIC-P).

PubMed

Wang, Emily A; Aminawung, Jenerius A; Ferguson, Warren; Trestman, Robert; Wagner, Edward H; Bova, Carol

2014-10-01

Chronic disease care is being transformed in correctional settings, given an aging inmate population, ongoing quality improvement efforts, litigation, and rising costs. The Chronic Care Model, established for chronic disease care in the community, might be a suitable framework to transform chronic disease care in prison, but it has not been systematically adapted for the correctional health care setting. We employed cognitive interviewing to adapt an extant survey used to measure the delivery of chronic illness care in the community, Assessment of Chronic Illness Care, for a prison setting. Results from the cognitive interviews and the modified Assessment of Chronic Illness Care-Prison (ACIC-P) instrument are presented in this article. Future studies will need to test the reliability and psychometric properties of the adapted ACIC-P. © The Author(s) 2014.

Mapping chronic illness in the age of globalization: reclaiming the good for the chronically ill.

PubMed

del Pilar Camargo Plazas, Maria

2009-01-01

Until recently, infectious diseases were the main cause of death worldwide. New medical discoveries and the evolution of public health improved life expectancy and the ability to survive acute threats, thus changing the course of diseases from acute to chronic. Today, chronic illness is the most important health concern worldwide. Chronic illness increases existing poverty and pushes other people into it. As nurses, members of the healthcare system and members of this world, we cannot forget that our response toward globalization and chronic disease has to be centered in leadership through reorienting local and national healthcare systems. All actions must be grounded in the ethical treatment of the ill; we cannot close our eyes in hospitals or communities to what is happening now worldwide because our responsibility is to promote health, prevent disease, and care for human beings.

Caring for the Chronically Ill: A Vital Subject for Medical Education.

ERIC Educational Resources Information Center

Cohen, Andrew J.

1998-01-01

Patients with chronic illness account for three-fourths of United States' health-care expenditures, and considerable growth in these costs is likely as the population ages. However, management of chronic illness has received little attention in either undergraduate or graduate medical education. Competencies required to develop curricula in…

School Reentry for the Child with Chronic Illness.

ERIC Educational Resources Information Center

Sexson, Sandra B.; Madan-Swain, Avi

1993-01-01

This article focuses on the issues of reintegrating the chronically ill child into the school setting, the types of school problems encountered, the process of school reentry, (including a successful school reentry plan), and the implications for the school and the family of returning the chronically ill child to school. (DB)

Children Coping with Chronic Illness.

ERIC Educational Resources Information Center

Perez, Lissette M.

Children who live with chronic illness are confronted with challenges that frequently force them to cope in myriad ways. The ways in which children face chronic illness are summarized in this literature review. Also covered, are how the effects of family can influence coping strategies and how family members, especially parents, cope with their…

A Metasynthesis of Factors Affecting Self-Management of Chronic Illness

PubMed Central

SCHULMAN-GREEN, Dena; JASER, Sarah S.; PARK, Chorong; WHITTEMORE, Robin

2015-01-01

Aim To identify factors that may serve as facilitators and barriers to self-management described by adults living with chronic illness by conducting a qualitative metasynthesis. Background Self-management is an individuals’ active management of a chronic illness in collaboration with their family members and clinicians. Design Qualitative metasynthesis. Data Sources We analyzed studies (N=53) published between January 2000–May 2013 that described factors affecting self-management in chronic illness as reported by adults aged over 18 years with chronic illness. Review Methods Sandelowsi and Barroso approach to qualitative metasynthesis: literature search; quality appraisal; analysis; and synthesis of findings. Results Collectively, article authors reported on sixteen chronic illnesses, most commonly diabetes (N=28) and cardiovascular disease (N=20). Participants included men and women (mean age=57, range 18–94) from twenty countries representing diverse races and ethnicities. We identified five categories of factors affecting self-management: Personal/Lifestyle Characteristics; Health Status; Resources; Environmental Characteristics; and Health Care System. Factors may interact to affect self-management and may exist on a continuum of positive (facilitator) to negative (barrier). Conclusion Understanding factors that influence self-management may improve assessment of self-management among adults with chronic illness and may inform interventions tailored to meet individuals’ needs and improve health outcomes. PMID:26781649

Working as a doctor when chronically ill or disabled: comments made by doctors responding to UK surveys.

PubMed

Smith, Fay; Goldacre, Michael J; Lambert, Trevor W

2016-07-01

To report a qualitative study of themes doctors raised spontaneously, in a large-scale prospective cohort study covering many aspects of their medical careers, when referring to their own chronic illness or disability. Questionnaire survey. UK. Questionnaires were sent one, five and 10 years after graduation to 44,539 doctors who qualified between 1993 and 2012 in the UK: 38,613 questionnaires were returned and 11,859 respondents provided comments made by doctors about their training or work. The comments of 123 doctors about their own chronic illness or disability. Main themes raised included poor support for doctors with chronic illness or disability, delays in and changes to careers (either planned ahead or imposed), the impact of pressure at work, difficulties returning to work after illness, limitations on career choices and inadequate careers advice for doctors with chronic illness or disabilities. More needs to be done to ensure that doctors with chronic illness or disability receive appropriate support. Occupational health guidance should be monitored closely, with more support for ill doctors including adjustments to the job, help if needed with morale and mental health, and advice on career options. Further studies should establish the prevalence of long-term health conditions among doctors.

Does health status influence acceptance of illness in patients with chronic respiratory diseases?

PubMed

Kurpas, D; Mroczek, B; Brodowski, J; Urban, M; Nitsch-Osuch, A

2015-01-01

The level of illness acceptance correlates positively with compliance to the doctor's recommendations, and negatively with the frequency and intensity of complications of chronic diseases. The purpose of this study was to determine the influence of the clinical condition on the level of illness acceptance, and to find variables which would have the most profound effect on the level of illness acceptance in patients with chronic respiratory diseases. The study group consisted of 594 adult patients (mean age: 60 ± 15 years) with mixed chronic respiratory diseases, recruited from patients of 136 general practitioners. The average score in the Acceptance of Illness Scale was 26.2 ± 7.6. The low level of illness acceptance was noted in 174 (62.6 %) and high in 46 (16.6 %) patients. Analysis of multiple regressions was used to examine the influence of explanatory variables on the level of illness acceptance. The variables which shaped the level of illness acceptance in our patients included: improvement of health, intensity of symptoms, age, marital status, education level, place of residence, BMI, and the number of chronic diseases. All above mentioned variables should be considered during a design of prevention programs for patients with mixed chronic respiratory diseases.

The importance of illness duration, age at diagnosis and the year of diagnosis for labour participation chances of people with chronic illness: results of a nationwide panel-study in The Netherlands.

PubMed

Rijken, Mieke; Spreeuwenberg, Peter; Schippers, Joop; Groenewegen, Peter P

2013-09-04

Compared to participation rates among general populations, participation of people with chronic illness in the labour market lags behind. This is undesirable, both from the perspective of individuals' well-being as from a macro-economic perspective for western countries where concerns exist about labour supply and sustainability of social security in the near future. To help develop successful policy measures to prevent early drop-out and support reintegration, we aimed to gain insight into the role of three age related characteristics that may relate to labour participation chances of people with chronic illness: the duration of their illness, how old they were when the chronic disease was diagnosed and the historical year in which the diagnosis was established. We analyzed data of one (first) measurement of several cohorts of people diagnosed with a somatic chronic disease, who (had) participated in the Dutch 'National Panel of people with Chronic illness or Disability' since 1998 (N = 4634 in total). Multi-level logistic regression analyses were conducted to estimate random effects of the age at diagnosis and the year of diagnosis and fixed effects of illness duration on labour participation, while correcting for the effects of socio-demographic and disease characteristics and socio-economic indicators. A significant part of the variation in labour participation among people with chronic illness relates to the age they had when they were diagnosed. Furthermore, a longer illness duration is significantly associated with a lower chance of being economically active. This is more the case for men than for women. Labour participation of cancer survivors depends on the phase of the illness they find themselves in. No evidence was found that the year in which the diagnosis was established matters for employment chances later in life. Age at diagnosis and illness duration relate to chronically ill people's chances to participate in the labour market, but how and how strong they relate to labour participation depend on gender and the type of chronic disease at stake. Prospective studies are needed to assess illness trajectories of specific diagnostic groups along with the development of their school and work careers.

The importance of illness duration, age at diagnosis and the year of diagnosis for labour participation chances of people with chronic illness: results of a nationwide panel-study in the Netherlands

PubMed Central

2013-01-01

Background Compared to participation rates among general populations, participation of people with chronic illness in the labour market lags behind. This is undesirable, both from the perspective of individuals’ well-being as from a macro-economic perspective for western countries where concerns exist about labour supply and sustainability of social security in the near future. To help develop successful policy measures to prevent early drop-out and support reintegration, we aimed to gain insight into the role of three age related characteristics that may relate to labour participation chances of people with chronic illness: the duration of their illness, how old they were when the chronic disease was diagnosed and the historical year in which the diagnosis was established. Methods We analyzed data of one (first) measurement of several cohorts of people diagnosed with a somatic chronic disease, who (had) participated in the Dutch ‘National Panel of people with Chronic illness or Disability’ since 1998 (N = 4634 in total). Multi-level logistic regression analyses were conducted to estimate random effects of the age at diagnosis and the year of diagnosis and fixed effects of illness duration on labour participation, while correcting for the effects of socio-demographic and disease characteristics and socio-economic indicators. Results A significant part of the variation in labour participation among people with chronic illness relates to the age they had when they were diagnosed. Furthermore, a longer illness duration is significantly associated with a lower chance of being economically active. This is more the case for men than for women. Labour participation of cancer survivors depends on the phase of the illness they find themselves in. No evidence was found that the year in which the diagnosis was established matters for employment chances later in life. Conclusion Age at diagnosis and illness duration relate to chronically ill people’s chances to participate in the labour market, but how and how strong they relate to labour participation depend on gender and the type of chronic disease at stake. Prospective studies are needed to assess illness trajectories of specific diagnostic groups along with the development of their school and work careers. PMID:24007362

Illness perceptions and coping with disease in chronic obstructive pulmonary disease: Effects on health-related quality of life.

PubMed

Vaske, Isabelle; Kenn, Klaus; Keil, Daniel C; Rief, Winfried; Stenzel, Nikola M

2017-10-01

This study investigated the effects of illness perceptions and coping with disease on health-related quality of life in chronic obstructive pulmonary disease. Therefore, participants ( N = 444) completed online questionnaires assessing illness severity (chronic obstructive pulmonary disease stage), Illness Perceptions Questionnaire, coping with disease (Essener Coping Questionnaire), and health-related quality of life (short form-12). Hierarchical regression and moderation analyses were conducted. The results showed that health-related quality of life was predicted by illness perceptions and several aspects of coping with disease. The association between illness perceptions and health-related quality of life was mediated by the corresponding coping with disease subscales. It is concluded that in order to prevent decreasing health-related quality of life in chronic obstructive pulmonary disease, treatment may be adjusted by promoting coping with disease and functional illness perceptions.

Complete mental health in adult siblings of those with a chronic illness or disability.

PubMed

Hallion, Madeleine; Taylor, Amanda; Roberts, Rachel

2018-02-01

Sibling relationships have lifelong significance and childhood chronic illness and disability can have considerable impacts on healthy siblings, influencing development into adulthood. Research has not yet assessed well-being in this population using measures of both mental health and mental illness. Thus, this study assessed well-being in a comprehensive manner using the complete mental health (CMH) model. Participants (N = 144) included both adult siblings of those with chronic illness or disability and adults with healthy siblings. Measures of positive social, psychological and emotional well-being were used to assess mental health and a measure of depression, anxiety, and stress was used to assess mental illness. A high proportion of participants, both with and without siblings with a chronic illness or disability, were experiencing symptoms of mental illness, accompanied by high wellbeing. This indicates that many participants fit into the struggling category of the CMH model. The present research highlights the need for early intervention services to ensure that siblings of those with a chronic illness or disability are well supported in developing strengths, as well as managing difficulties. Results also indicate that targeting students in mental health promotion is important to encourage participation in services. Implications for rehabilitation Siblings of those with a chronic illness or disability need to be included in assessments in order to understand the experience of the family unit. It is important for families and clinicians to be aware of the needs of healthy siblings and encourage them to interact with support services in order to maximise and maintain well-being. Skills-based support could be beneficial, particularly for providing caregivers with strategies to meet the needs of both their child with a chronic illness or disability and their healthy children.

Do everyday problems of people with chronic illness interfere with their disease management?

PubMed

van Houtum, Lieke; Rijken, Mieke; Groenewegen, Peter

2015-10-01

Being chronically ill is a continuous process of balancing the demands of the illness and the demands of everyday life. Understanding how everyday life affects self-management might help to provide better professional support. However, little attention has been paid to the influence of everyday life on self-management. The purpose of this study is to examine to what extent problems in everyday life interfere with the self-management behaviour of people with chronic illness, i.e. their ability to manage their illness. To estimate the effects of having everyday problems on self-management, cross-sectional linear regression analyses with propensity score matching were conducted. Data was used from 1731 patients with chronic disease(s) who participated in a nationwide Dutch panel-study. One third of people with chronic illness encounter basic (e.g. financial, housing, employment) or social (e.g. partner, children, sexual or leisure) problems in their daily life. Younger people, people with poor health and people with physical limitations are more likely to have everyday problems. Experiencing basic problems is related to less active coping behaviour, while experiencing social problems is related to lower levels of symptom management and less active coping behaviour. The extent of everyday problems interfering with self-management of people with chronic illness depends on the type of everyday problems encountered, as well as on the type of self-management activities at stake. Healthcare providers should pay attention to the life context of people with chronic illness during consultations, as patients' ability to manage their illness is related to it.

Improving Communication About Serious Illness

ClinicalTrials.gov

2017-01-07

Critical Illness; Chronic Disease; Terminal Care; Palliative Care; Communication; Advance Care Planning; Neoplasm Metastasis; Lung Neoplasms; Pulmonary Disease, Chronic Obstructive; Heart Failure; End Stage Liver Disease; Kidney Failure, Chronic

Family Approaches to the Chronically Mentally Ill: Implications for Rural Areas.

ERIC Educational Resources Information Center

Kilpatrick, Allie C.; Kilpatrick, Ebb G.

The decade of the 1980s has witnessed a rebirth of concern regarding the chronically mentally ill. The way mental health professionals view families of the chronically mentally ill has changed dramatically, largely because of the emergence of the biological theories of causation for schizophrenia. Innovative programs for families have included…

78 FR 6404 - Agency Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

Federal Register 2010, 2011, 2012, 2013, 2014

2013-01-30

...: Approximately 25 percent military troops who were deployed in the first Persian Gulf War returned with... of Chronic Gastrointestinal Illness in Persian Gulf Veterans) Activities Under OMB Review AGENCY.... Survey of Chronic Gastrointestinal Illness in Persian Gulf Veterans, VA Form 10-21092a. b. VA Research...

Effects of Sudden vs. Chronic Illness Death on Bereavement Outcome.

ERIC Educational Resources Information Center

Sanders, Catherine M.

1982-01-01

Interviewed bereaved persons shortly after the death of a close family member and 18 months later. Respondents were grouped according to mode of death. The short-term chronic illness group made the most favorable adjustment. Sudden death and long-term chronic illness death groups sustained higher intensities of bereavement. (Author/RC)

Women's self-management of chronic illnesses in the context of caregiving: a grounded theory study.

PubMed

Martinez-Marcos, Mercedes; De la Cuesta-Benjumea, Carmen

2015-06-01

Uncover how women self-manage their own chronic illness while taking care of a dependent relative. International policies place special emphasis in promoting interventions addressed to control, prevent and care for people with chronic health conditions. Self-management is a crucial part of this care. Caregivers are more prone to have chronic illness than non-caregivers. They are confronted with dilemmas about taking care of themselves while taking care of their dependent relative and the rest of their families. Caregivers articulate strategies to enable them to focus their energy on caring. Qualitative study using constructivist grounded theory. Thirty-nine women caregivers with a chronic illness participated in the study. Twenty-three semi-structured interviews and two focus groups were carried out between April 2010-December 2011. Data were analysed using grounded theory procedures. Self-management helps women caregivers with a chronic illness to balance the demands of their own illness and those of the dependent relative. They self-manage their illness by self-regulating the treatment, by regulating their strength and by controlling their emotions. Women caregivers integrate effectively and creatively the management of their chronic illnesses within the complexities of family care. This renders their health needs invisible and reaffirms them as capable caregivers. Identifying self-management strategies of women caregivers allow health professionals to acknowledge and reinforce effective self-care measures and to deter those that are ineffective and lessen their quality of life. © 2014 John Wiley & Sons Ltd.

Sickness absence management: encouraging attendance or 'risk-taking' presenteeism in employees with chronic illness?

PubMed

Munir, Fehmidah; Yarker, Joanna; Haslam, Cheryl

2008-01-01

To investigate the organizational perspectives on the effectiveness of their attendance management policies for chronically ill employees. A mixed-method approach was employed involving questionnaire survey with employees and in-depth interviews with key stakeholders of the organizational policies. Participants reported that attendance management polices and the point at which systems were triggered, posed problems for employees managing chronic illness. These systems presented risk to health: employees were more likely to turn up for work despite feeling unwell (presenteeism) to avoid a disciplinary situation but absence-related support was only provided once illness progressed to long-term sick leave. Attendance management polices also raised ethical concerns for 'forced' illness disclosure and immense pressures on line managers to manage attendance. Participants felt their current attendance management polices were unfavourable toward those managing a chronic illness. The policies heavily focused on attendance despite illness and on providing return to work support following long-term sick leave. Drawing on the results, the authors conclude that attendance management should promote job retention rather than merely prevent absence per se. They outline areas of improvement in the attendance management of employees with chronic illness.

At-risk studies and clinical antecedents of psychosis, bipolar disorder and depression: a scoping review in the context of clinical staging.

PubMed

Hartmann, Jessica A; Nelson, Barnaby; Ratheesh, Aswin; Treen, Devi; McGorry, Patrick D

2018-06-04

Identifying young people at risk of developing serious mental illness and identifying predictors of onset of illness has been a focus of psychiatric prediction research, particularly in the field of psychosis. Work in this area has facilitated the adoption of the clinical staging model of early clinical phenotypes, ranging from at-risk mental states to chronic and severe mental illness. It has been a topic of debate if these staging models should be conceptualised as disorder-specific or transdiagnostic. In order to inform this debate and facilitate cross-diagnostic discourse, the present scoping review provides a broad overview of the body of literature of (a) longitudinal at-risk approaches and (b) identified antecedents of (homotypic) illness progression across three major mental disorders [psychosis, bipolar disorder (BD) and depression], and places these in the context of clinical staging. Stage 0 at-risk conceptualisations (i.e. familial high-risk approaches) were identified in all three disorders. However, formalised stage 1b conceptualisations (i.e. ultra-high-risk approaches) were only present in psychosis and marginally in BD. The presence of non-specific and overlapping antecedents in the three disorders may support a general staging model, at least in the early stages of severe psychotic or mood disorders.

How Clinicians Feel about Working with Spouses of the Chronically Ill.

PubMed

Ingram, Douglas H

2015-09-01

Clinicians who provide psychotherapy to spouses or partners of the chronically ill were solicited through listserves of psychodynamic and other organizations. The current report excluded those therapists working with spouses of dementia patients. Interviews were conducted with clinicians who responded. The interviews highlight the challenges commonly encountered by psychotherapeutic work with this cohort of therapy patients. A comparison is drawn that shows both overlap and distinctions between the experiences of those therapists engaging with spouses of chronically ill patients without a dementing process and those working with spouses of chronically ill patients who do suffer from a dementing process.

Extending the P4P agenda, part 2: how Medicare can reduce waste and improve the care of the chronically ill.

PubMed

Wennberg, John E; Fisher, Elliott S; Skinner, Jonathan S; Bronner, Kristen K

2007-01-01

The care of Americans with severe chronic illnesses is disorganized, unnecessarily costly, and undisciplined by sound clinical science. The federal government should invest in a crash program to improve the scientific basis of managing chronic illness, and the Centers for Medicare and Medicaid Services (CMS) should extend its pay-for-performance (P4P) agenda to ensure that within ten years all Americans with severe chronic illnesses have access to accountable health care organizations providing evidence-based prospective care. This paper recommends a strategy for achieving this goal.

How do macro-level contexts and policies affect the employment chances of chronically ill and disabled people? Part II: The impact of active and passive labor market policies.

PubMed

Holland, Paula; Nylén, Lotta; Thielen, Karsten; van der Wel, Kjetil A; Chen, Wen-Hao; Barr, Ben; Burström, Bo; Diderichsen, Finn; Andersen, Per Kragh; Dahl, Espen; Uppal, Sharanjit; Clayton, Stephen; Whitehead, Margaret

2011-01-01

The authors investigate three hypotheses on the influence of labor market deregulation, decommodification, and investment in active labor market policies on the employment of chronically ill and disabled people. The study explores the interaction between employment, chronic illness, and educational level for men and women in Canada, Denmark, Norway, Sweden, and the United Kingdom, countries with advanced social welfare systems and universal health care but with varying types of active and passive labor market policies. People with chronic illness were found to fare better in employment terms in the Nordic countries than in Canada or the United Kingdom. Their employment chances also varied by educational level and country. The employment impact of having both chronic illness and low education was not just additive but synergistic. This amplification was strongest for British men and women, Norwegian men, and Danish women. Hypotheses on the disincentive effects of tighter employment regulation or more generous welfare benefits were not supported. The hypothesis that greater investments in active labor market policies may improve the employment of chronically ill people was partially supported. Attention must be paid to the differential impact of macro-level policies on the labor market participation of chronically ill and disabled people with low education, a group facing multiple barriers to gaining employment.

Effects of Parental Chronic Illness on Children's Psychosocial and Educational Functioning: A Literature Review

ERIC Educational Resources Information Center

Chen, Cliff Yung-Chi

2017-01-01

A good number of children grow up in households where a parent has been diagnosed with medical chronic illness. Parental chronic illness is stressful for children and adolescents and may have some potential impact on children's adjustment and functioning. Some emerging research conducted in the fields of medicine, nursing, and family studies has…

Psychosocial Experiences of Chronic Illness in Individuals with an Intellectual Disability: A Systematic Review of the Literature

ERIC Educational Resources Information Center

Flynn, Samantha; Hulbert-Williams, Nicholas; Hulbert-Williams, Lee; Bramwell, Ros

2015-01-01

Background: Increased life expectancy has led to an increase in diagnoses of chronic illness in people with an intellectual disability; despite this increase, research about the psychological impact is rare. This review explored the psychosocial experiences of chronic illness in adults with an intellectual disability, revealing potential…

Life after the Shock! The Impact on Families of Caring for Young Children with Chronic Illness

ERIC Educational Resources Information Center

Ashton, Jean

2004-01-01

The stresses experienced by most families include limitations on time, conditions of employment, financial burdens and sibling rivalry. For the families of a child with a chronic illness, these stresses are often compounded, making family functioning problematic. Chronic illness is marked by permanency and the need for ongoing vigilance with…

Chronic Illness & Mental Health

MedlinePlus

... chronic medical conditions have a higher risk of depression. The same factors that increase risk of depression ... a chronic or long-term illness. People with depression are at higher risk for other medical conditions. ...

Online self-management interventions for chronically ill patients: cognitive impairment and technology issues.

PubMed

Archer, Norm; Keshavjee, Karim; Demers, Catherine; Lee, Ryan

2014-04-01

As the fraction of the population with chronic diseases continues to grow, methods and/or technologies must be found to help the chronically ill to take more responsibility to self-manage their illnesses. Internet based and/or mobile support for disease self-management interventions have often proved effective, but patients with chronic illnesses may have co-occurring cognitive impairment, making it more difficult for them to cope with technologies. Many older patients are also not familiar with technologies or they may have cognitive disabilities or dementia that reduce their ability to self-manage their healthcare. On-line solutions to the needs of chronically ill patients must be investigated and acted upon with care in an integrated manner, since resources invested in these solutions will be lost if patients do not adopt and continue to use them successfully. To review the capabilities of online and mobile support for self-management of chronic illnesses, and the impacts that age and disease-related issues have on these interventions, including cognitive impairment and lack of access or familiarity with Internet or mobile technologies. This study includes a review of the co-occurrence of cognitive impairment with chronic diseases, and discusses how cognitive impairment, dyadic caregiver patient support, patient efficacy with technology, and smart home technologies can impact the effectiveness and sustainability of online support for disease self-management. Disease self-management interventions (SMIs) using online patient centered support can often enable patients to manage their own chronic illnesses. However, our findings show that cognitive impairment often co-occurs in patients with chronic disease. This, along with age-related increases in multiple chronic illnesses and lack of technology efficacy, can be obstacles to Internet and mobile support for chronic disease self-management. Patients with chronic diseases may have greater than expected difficulties in using Internet and mobile technologies for disease self-management, often due to cognitive impairment or unfamiliarity with technology. Approaches to dealing with such barriers include suitable integration of solutions involving patient-caregiver dyads, better design of online applications, careful attention to technology adoption and sustainability, and smart home technologies. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

Perceived resource support for chronic illnesses among diabetics in north-western China.

PubMed

Zhong, Huiqin; Shao, Ya; Fan, Ling; Zhong, Tangshen; Ren, Lu; Wang, Yan

2016-06-01

A high level of social support can improve long-term diabetes self-management. Support from a single source has been evaluated. This study aims to analyze support from multiple and multilevel sources for diabetic patients by using the Chronic Illness Resources Survey (CIRS). Factors influencing the utilization of the CIRS were also evaluated. A total of 297 patients with diabetes were investigated using the CIRS and Perceived Diabetes Self-management Scale in Shihezi City, China. Descriptive statistics were used to explain demographic variables and scores of the scales. Factors affecting the utilization of chronic illness resources were determined through univariate analysis and then examined by multivariate logistic regression analysis. Of the 297 diabetic patients surveyed, 67% failed to reach the standard (more than 3 points) of utilizing chronic illness resources. Moreover, utilization of chronic illness resources was positively moderately correlated with self-management of diabetes (r = 0.75, P < 0.05). According to the multivariate logistic regression analysis, age (OR, 3.42; 95%CI, 1.19-9.84) and monthly income (OR, 5.27; 95%CI, 1.86-14.90) were significantly positively associated with the CIRS score. Individuals with high school (OR, 2.61; 95%CI, 1.13-6.05) and college (OR, 3.02; 95%CI, 1.13-8.04) degrees obtained higher scores in the survey than those with elementary school education. Results indicated that utilization of resources and support for chronic illness self-management, particularly personal adjustment and organization, were not ideal among diabetics in the communities of north-western China. Improved utilization of chronic illness resources was conducive for proper diabetes self-management. Furthermore, the level of utilization of chronic illness resources increased with age, literacy level, and monthly income.

Neighbourly support of people with chronic illness; is it related to neighbourhood social capital?

PubMed

Waverijn, Geeke; Heijmans, Monique; Groenewegen, Peter P

2017-01-01

The neighbourhood may provide resources for health. It is to date unknown whether people who live in neighbourhoods with more social capital have more access to practical and emotional support by neighbours, or whether this is a resource only available to those who are personally connected to people in their neighbourhood. We investigated whether support by neighbours of people with chronic illness was related to neighbourhood social capital and to individual neighbourhood connections. Furthermore, we investigated whether support received from neighbours by people with chronic illness differed according to demographic and disease characteristics. We collected data on support by neighbours and individual connections to neighbours among 2272 people with chronic illness in 2015. Data on neighbourhood social capital were collected among 69,336 people in 3425 neighbourhoods between May 2011 and September 2012. Neighbourhood social capital was estimated with ecometric measurements. We conducted multilevel regression analyses. People with chronic illness were more likely to receive practical and emotional support from neighbours if they had more individual connections to people in their neighbourhood. People with chronic illness were not more likely to receive practical and emotional support from neighbours if they lived in a neighbourhood with more social capital. People with chronic illness with moderate physical disabilities or with comorbidity, and people with chronic illness who lived together with their partner or children, were more likely to receive support from neighbours. To gain more insight into the benefits of neighbourhood social capital, it is necessary to differentiate between the resources only accessible through individual connections to people in the neighbourhood and resources provided through social capital on the neighbourhood level. Copyright © 2016 Elsevier Ltd. All rights reserved.

A literature review on self-care of chronic illness: definition, assessment and related outcomes.

PubMed

Ausili, Davide; Masotto, Matteo; Dall'Ora, Chiara; Salvini, Lorena; Di Mauro, Stefania

2014-01-01

Chronic illnesses care represents a challenging issue for people well-being and future health systems' sustainability. Promotion of self-care is considered a key point for chronically ill patients' care. The aim of this literature was to explore: how self-care of chronic illness has been theoretically defined; how self-care can be assessed in clinical and research settings; what associations exist between self-care and health outcomes of chronically ill patients. A wide range of definitions and terminologies related to self-care of chronic illness has been found in the literature. Although some common elements useful to explain the concept of self-care have been identified, the physical, cognitive, emotional and social processes underlying self-care remain controversial and poorly defined. Valid and reliable disease-specific assessment tools have been developed and used in a growing number of studies; however, the lack of utilization of standardized instruments in clinical practice has been referred by many authors. Significant correlations between self-care of chronic illness and outcome measures e.g. general health status, quality of life and healthcare costs, are reported by a limited number of studies. Supporting patient self-care is recognized as a crucial factor in chronic illness care. A deeper analysis of variables and processes influencing self-care could help for a full description of the phenomenon. A systematic evaluation of self-care in health professionals' everyday clinical practice is strongly recommended. The development of general non-disease-specific assessment tools could facilitate the evaluation of complex patients, especially those with multiple co-morbidities. Although self-care has been recognized as a vital intermediate outcome, further large-scale studies clarifying the association between self-care and patients' and health systems' outcomes are needed.

Attitudes toward mental illness in adults by mental illness-related factors and chronic disease status: 2007 and 2009 Behavioral Risk Factor Surveillance System.

PubMed

Kobau, Rosemarie; Zack, Matthew M

2013-11-01

We examined how attitudes toward mental illness treatment and its course differ by serious psychological distress, mental illness treatment, chronic disease, and sociodemographic factors using representative state-based data. Using data from jurisdictions supporting the Behavioral Risk Factor Surveillance System's Mental Illness and Stigma Module (35 states, the District of Columbia, and Puerto Rico), we compared adjusted proportions of adults agreeing that "Treatment can help people with mental illness lead normal lives" (treatment effectiveness) and that "People are generally caring and sympathetic to people with mental illness" (supportive environment), by demographic characteristics, serious psychological distress, chronic disease status, and mental illness treatment. Attitudes regarding treatment effectiveness and a supportive environment for people with mental illness varied within and between groups. Most adults receiving mental illness treatment agreed that treatment is effective. Fewer adults with serious psychological distress than those without such distress agreed that treatment is effective. Fewer of those receiving treatment, those with psychological distress, and those with chronic disease perceived the environment as supportive. These data can be used to target interventions for population subgroups with less favorable attitudes and for surveillance.

Giving patients responsibility or fostering mutual response-ability: family physicians' constructions of effective chronic illness management.

PubMed

Thille, Patricia H; Russell, Grant M

2010-10-01

Current visions of family medicine and models of chronic illness management integrate evidence-based medicine with collaborative, patient-centered care, despite critiques that these constructs conflict with each other. With this potential conflict in mind, we applied a critical discursive psychology methodology to present discursive patterns articulated by 13 family physicians in Ontario, Canada, regarding care of patients living with multiple chronic illnesses. Physicians constructed competing versions of the terms "effective chronic illness management" and "patient involvement." One construction integrated individual responsibility for health with primacy of "evidence," resulting in a conceptualization consistent with paternalistic care. The second constructed effective care as involving active partnership of physician and patient, implying a need to foster the ability of both practitioners and patients to respond to complex challenges as they arose. The former pattern is inconsistent with visions of family medicine and chronic illness management, whereas the latter embodies it.

Loneliness and Cognitive Function in Older Adults: Findings From the Chinese Longitudinal Healthy Longevity Survey

PubMed Central

Chen, Shu-Lin; Tu, Xin; Conwell, Yeates

2017-01-01

Objectives: To examine the relationship between loneliness and cognitive function and to explore the mediating role of physical health on the loneliness–cognition relationship in Chinese older adults (OAs). Method: Data came from a nationally representative sample of 14,199 Chinese OAs (aged 65+) from 2002, 2005, 2008, and 2011 waves of the Chinese Longitudinal Healthy Longevity Survey. A latent variable cross-lagged panel model combined with mediation analysis was used to determine the relationship between loneliness and cognitive function and the mediating effect of increase in the number of chronic conditions (ΔNCCs) on the ascertained loneliness–cognition relationship. Results: Severe loneliness at prior assessment points was significantly associated with poorer cognitive function at subsequent assessments, and vice versa. The ΔNCCs partially mediated this prospective reciprocal relationships, accounting for 2.58% of the total effect of loneliness on cognition and 4.44% of the total effect of cognition on loneliness, respectively. Discussion: Loneliness may predict subsequent cognitive decline, and vice versa. This loneliness–cognition relationship is partially explained by their impact on physical health. Multidisciplinary interventions aimed at reducing loneliness and cognitive decline per se and their associated risk factors as well as improving chronic illness management would be beneficial for emotional well-being and cognitive health in OAs. PMID:27013536

Consequences of caring for a child with a chronic disease: Employment and leisure time of parents.

PubMed

Hatzmann, Janneke; Peek, Niels; Heymans, Hugo; Maurice-Stam, Heleen; Grootenhuis, Martha

2014-12-01

Chronically ill children require several hours of additional care per day compared to healthy children. As parents provide most of this care, they have to incorporate it into their daily schedule, which implies a reduction in time for other activities. The study aimed to assess the effect of having a chronically ill child on parental employment and parental leisure activity time, and to explore the role of demographic, social, and disease-related variables in relation to employment and leisure activities. Outcomes of 576 parents of chronically ill children and 441 parents of healthy school children were analyzed with multivariate regression. Having a chronically ill child was negatively related with family employment, maternal labor force participation, and leisure activity time. Use of child care was positively related to family and maternal employment of the total group of parents. Within parents of chronically ill children, most important finding was the negative relation of dependency of the child on daily care and low parental educational level with family and maternal employment. In conclusion, parents of chronically ill children, mothers in particular, are disadvantaged in society probably due to the challenge of combining child care with work and leisure time. © The Author(s) 2013.

A center for self-management of chronic illnesses in diverse groups.

PubMed

Inouye, Jillian; Boland, Mary G; Nigg, Claudio R; Sullivan, Kathleen; Leake, Anne; Mark, Debra; Albright, Cheryl L

2011-01-01

Prevention and successful treatment of chronic disease require a scientific understanding of the impacts and interactions of ethnicity, culture, and illness on self-management interventions. This article presents one approach to developing effective methods to address the needs of ethnic minorities living with chronic illnesses. Described is the University of Hawaii Center for Ohana Self-Management of Chronic Illnesses (COSMCI) located in the School of Nursing & Dental Hygiene and funded by the National Institute of Nursing Research (Award Number P20NR010671). The interdisciplinary center focuses on family and community self-management interventions in ethnically diverse populations with chronic illnesses. Areas discussed are: 1) the operational structure for creating an environment conducive to interdisciplinary ohana self-management chronic illness research in ethnically diverse populations; and 2) the development of sustainable interdisciplinary, biobehavioral research capacity. The COSMCI uses a social cognitive theory framework to guide the application of established self-management interventions to Asian and Pacific Island populations (API) through three conceptually linked research projects on HIV infection, type 2 diabetes, and chronic obstructive pulmonary disease. COSMI addresses the feasibility of sharing of lessons learned among the approaches taken. The interdisciplinary nature of COSMCI increases the potential success of the intervention efforts. Hawaii Medical Journal Copyright 2010.

Marital context and post-infarction quality of life: is it social support or something more?

PubMed

Waltz, M

1986-01-01

The development of a theory of quality of life following serious illness is currently an important field of endeavour in rehabilitation research. The interpersonal relationships of people and elements of the self-concept appear to be salient factors in causal models of subjective well-being. One such model developed to explain characteristic levels of well-being was used in a longitudinal study of adaptation to a first myocardial infarction. Data were collected from a national sample of male cardiac patients and their spouses on the illness and marital situation as predictors of long-term well-being or ill-being. Analyses of data from the first three waves of the study, which is to extend over 5 years after the onset of illness, are to be discussed in the paper. Marital status, the emotional quality of the spouse relationship and long-standing marital stressors were found to have direct and indirect effects on the two dimensions of the Bradburn Affect Balance Scale. The same is true of continuing problems associated with the heart attack relative to perceptions of having coped effectively with the after effects of illness. Differences in self-esteem and personal competence were suggested as mediators of socio-environmental and illness-related influences. The two-factor conception of well-being developed was found to be a useful framework for investigating positive and negative aspects of psychosocial rehabilitation. The same factors that explain differences between happy and unhappy people in social indicators research also appeared to be determinants of different trajectories of adaptation in the wake of a life-threatening illness. Previous research using theoretical models from stress research has overemphasized psychosocial morbidity and stress management and neglected positive processes of adaptation. The identification of love resources related to positive feeling states and life satisfaction has, therefore, not received the attention it deserves. This is especially the case regarding an overemphasis of the concept of social support as a buffer of stress. Instruments were developed to measure high and low marital intimacy, as well as chronic marital role strains, and these measures appeared to explain different trajectories of adjustment to cardiac disease. The two-factor model appears to be useful for future work on quality of life with chronic illness. The same is true of four marital contexts of rehabilitation that were identified in the study.

Longitudinal changes in health-related quality of life for chronic diseases: an example in hemophilia A.

PubMed

Poon, Jiat-Ling; Doctor, Jason N; Nichol, Michael B

2014-08-01

Patients with well-managed rare chronic diseases such as hemophilia maintain a stable health state and health-related quality of life (HrQoL) that may be affected by acute events. Longitudinal HrQoL assessments analyzed using multivariate multilevel (MVML) modelling can determine the impact of such events on individuals (within-person effect) and identify factors influencing within-population differences (between-person effect). To demonstrate the application of MVML modelling in a longitudinal study of HrQoL in hemophilia A. Using data on 136 adults and 125 children from a two-year observational cohort study of burden of illness in US hemophilia A patients, MVML modelling determined the effect of time-invariant (sociodemographic and clinical characteristics) and time-varying factors (bleeding frequency, emergency room visits, and missed work/school days) on within-person and between-person HrQoL changes. HrQoL was assessed using the SF-12 health survey (adults) and PedsQL inventory (children) at baseline, then every 6 months. In children, within-person (p < 0.0001) and between-person (p < 0.0001) psychosocial functioning was reduced by each additional bleed and missed day (within-person: p = 0.0089; between-person: p = 0.0060). Within-person physical functioning was reduced by each additional bleed (p < 0.0001), emergency room (ER) visit (p = 0.0284), and missed day (p = 0.0473). Between-persons, additional missed days (p < 0.0001) significantly decreased physical functioning. In adults, each additional missed day reduced SF-12 Health Survey mental (p = 0.0025) and physical (p = 0.0093) component summary scores. Each additional bleed also decreased physical component summary (PCS) significantly (p = 0.0093). This study demonstrated the applicability of MVML modelling in identifying time-invariant and time-varying factors influencing HrQoL in a rare chronic disease population. Small but significant within-person and between-person changes in HrQoL with each additional acute event experienced were identified, which if frequent, could have a large cumulative impact. The results suggest that MVML modelling may be applied to future studies of longitudinal change in HrQoL in other rare chronic disease populations.

Chronic illness and Hmong shamans.

PubMed

Helsel, Deborah; Mochel, Marilyn; Bauer, Robert

2005-04-01

Among the challenges health care personnel in California's central valley face has been finding ways to help Hmong Americans manage chronic illness. Interviews were conducted with 11 Hmong shamans diagnosed with diabetes or hypertension and were qualitatively analyzed to ascertain respondents' understanding and management of their illnesses. Hmong shamans are influential individuals within their communities and are often the resource persons to whom patients turn for information on health. Understanding the shamans' perspective on chronic illness was seen as a gateway to understanding how the broader Hmong American community perceived these conditions. The concept of chronic illness was not well understood, resulting in sporadic medication and dietary regimens, limited awareness of potential complications, and a persistent impression that these illnesses could be cured rather than managed. Suggestions for patient educators include family and community involvement in care regimens and the use of descriptive terminology to identify the disease.

Sleep and Culture in Children with Medical Conditions

PubMed Central

Koinis-Mitchell, Daphne

2010-01-01

Objectives To provide an integrative review of the existing literature on the interrelationships among sleep, culture, and medical conditions in children. Methods A comprehensive literature search was conducted using PubMed, Medline, and PsychINFO computerized databases and bibliographies of relevant articles. Results Children with chronic illnesses experience more sleep problems than healthy children. Cultural beliefs and practices are likely to impact the sleep of children with chronic illnesses. Few studies have examined cultural factors affecting the relationship between sleep and illness, but existing evidence suggests the relationship between sleep and illness is exacerbated for diverse groups. Conclusions Sleep is of critical importance to children with chronic illnesses. Cultural factors can predispose children both to sleep problems and to certain medical conditions. Additional research is needed to address the limitations of the existing literature, and to develop culturally sensitive interventions to treat sleep problems in children with chronic illnesses. PMID:20332222

An Exploratory Study of the Relationship of Family Support and Coping with Adjustment: Implications for College Students with a Chronic Illness

ERIC Educational Resources Information Center

Wodka, Ericka L.; Barakat, Lamia P.

2007-01-01

To examine the role of family support and coping in the adjustment of adolescents with chronic illness (CI) transitioning into college, college freshmen and sophomores (N[subscript chronic illness] = 32, N[subscript primarily negative life event] = 53, N[subscript primarily positive life event] = 16) were administered standard measures. CI group…

Nutritional Needs of the Handicapped/Chronically Ill Child. Manual I: Nutrition Program Planning. Presentations from a National Interdisciplinary Symposium.

ERIC Educational Resources Information Center

Ekvall, Shirley M., Ed.; And Others

The following papers were delivered at a symposium on improving the nutritional status of a child who is chronically ill or handicapped: (1) "Planning Comprehensive Health Services for the Chronically Ill/Handicapped Child; (2) "Future National Directions in Maternal and Child Health"; (3) "Nutrition Services in a State Crippled Children's…

Reserve-building activities attenuate treatment burden in chronic illness: The mediating role of appraisal and social support

PubMed Central

Schwartz, Carolyn E; Zhang, Jie; Michael, Wesley; Eton, David T; Rapkin, Bruce D

2018-01-01

This study examines the importance of four psychosocial factors—personality, cognitive appraisal of quality of life, social support, and current reserve-building—in predicting treatment burden in chronically ill patients. Chronically ill patients (n = 446) completed web-based measures. Structural equation modeling was used to investigate psychosocial factors predicting treatment burden. Reserve-building activities indirectly reduced treatment burden by: (1) reducing health worries appraisals, (2) reducing financial difficulties, (3) increasing calm and peaceful appraisals, and (4) increasing perceived social support. These findings point to key behaviors that chronically ill people can use to attenuate their treatment burden. PMID:29785278

Tools to assess living with a chronic illness: A systematic review.

PubMed

Ambrosio, Leire; Portillo, Mari Carmen

2018-05-16

To analyse the currently available instruments to assess living with a chronic illness and related aspects. A review of the evidence was made using the databases: Medline, CINHAL, PsycINFO, Cochrane Library, Embase and Cuiden. The criteria that limited the search were: the language, English and / or Spanish and studies carried out in an adult population. Years of article publication were not used as a limit. A total of 16 instruments were identified and analysed that apparently measured the concept of living with a chronic illness and/or related aspects. According to the name of the instrument, four seemed to evaluate the concept of living with a chronic illness while the rest of the instruments evaluated aspects intrinsically related to the concept of "living with", such as attributes or the meaning of living with a chronic illness. Different instruments were identified to evaluate daily living for the chronically ill patient, as well as related aspects. According to this review, further validation studies are required in other populations and/or contexts in order to achieve valid and reliable instruments that could be used in clinical practice. Copyright © 2018 Elsevier España, S.L.U. All rights reserved.

Quick screening tool for patients with severe negative emotional reactions to chronic illness: psychometric study of the negative emotions due to chronic illness screening test (NECIS).

PubMed

Huang, Yun-Hsin; Wu, Chih-Hsun; Chen, Hsiu-Jung; Cheng, Yih-Ru; Hung, Fu-Chien; Leung, Kai-Kuan; Lue, Bee-Horng; Chen, Ching-Yu; Chiu, Tai-Yuan; Wu, Yin-Chang

2018-01-16

Severe negative emotional reactions to chronic illness are maladaptive to patients and they need to be addressed in a primary care setting. The psychometric properties of a quick screening tool-the Negative Emotions due to Chronic Illness Screening Test (NECIS)-for general emotional problems among patients with chronic illness being treated in a primary care setting was investigated. Three studies including 375 of patients with chronic illness were used to assess and analyze internal consistency, test-retest reliability, criterion-related validity, a cut-off point for distinguishing maladaptive emotions and clinical application validity of NECIS. Self-report questionnaires were used. Internal consistency (Cronbach's α) ranged from 0.78 to 0.82, and the test-retest reliability was 0.71 (P < 0.001). Criterion-related validity was 0.51 (P < 0.001). Based on the 'severe maladaptation' and 'moderate maladaptation' groups defined by using the 'Worsening due to Chronic Illness' index as the analysis reference, the receiver-operating characteristic curve analysis revealed an area under the curve of 0.81 and 0.82 (ps < 0.001), and a cut-off point of 19/20 was the most satisfactory for distinguishing those with overly negative emotions, with a sensitivity and specificity of 83.3 and 69.0%, and 68.5 and 83.0%, respectively. The clinical application validity analysis revealed that low NECIS group showed significantly better adaptation to chronic illness on the scales of subjective health, general satisfaction with life, self-efficacy of self-care for disease, illness perception and stressors in everyday life. The NECIS has satisfactory psychometric properties for use in the primary care setting. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Individual care plans for chronically ill patients within primary care in the Netherlands: Dissemination and associations with patient characteristics and patient-perceived quality of care.

PubMed

Jansen, Daphne L; Heijmans, Monique; Rijken, Mieke

2015-06-01

To examine the use of individual care plans (ICPs) within primary chronic illness care in the Netherlands, and to explore the relationships between ICP use, patient characteristics, and patient-perceived quality of care. Cross-sectional study using survey data from a panel of chronically ill patients and medical registration data provided by their general practices. A sample of 1377 patients with somatic chronic disease(s) randomly selected in general practices throughout the Netherlands, supplemented with a sample of 225 COPD patients, also recruited from general practices. (i) Percentage of ICP use based on self-report by chronically ill patients, and (ii) patient-perceived quality of care as assessed using the Patient Assessment of Chronic Illness Care (PACIC). ICP use among the total generic sample was low (9%), but slightly higher (13%) among patients diagnosed with diabetes or COPD, diseases for which disease management programmes have been set up in the Netherlands. Patients with a low educational level and patients with poor(er) self-rated health were more likely to have an ICP. Compared with patients without an ICP, patients with an ICP more often reported that the care they received was patient-centred, proactive, planned, and included collaborative goal setting, problem-solving, and follow-up support. Findings reveal a discrepancy between practice and policy aspirations regarding ICP use in primary chronic illness care. More research is needed to gain insight into the effectiveness of ICPs to improve the quality of chronic illness care in various patient populations.

A meta-ethnographic synthesis on phenomenographic studies of patients’ experiences of chronic illness

PubMed Central

Röing, Marta

2015-01-01

Phenomenography is a qualitative research approach developed within an educational framework, focusing on the qualitative experience of learning. It is also being used, to a lesser degree, in healthcare research. In the present study, we conducted a meta-ethnographic synthesis of phenomenographic studies on chronic illness, in order to give a broader perspective of how chronic illness can be experienced. Our aim was not to describe patients’ various individual experiences of illness, but instead to identify the different ways chronic illness can be experienced by patients. Our synthesis and phenomenographic interpretation of 12 selected articles found that patients’ experiences of chronic illness can be described in terms of a different lived body, a struggle with threat to identity and self-esteem, a diminished lifeworld, and a challenging reality. These experiences relate to each other in a process of recurring loops, where the different ways of experiencing continue to influence each other over time. According to these findings, the use of phenomenography as a research approach has the potential to add to the understanding of how chronic illness can be experienced. Patients may benefit from seeing that their illness can be experienced in many different ways and that it has many aspects, which then can lead to a better understanding and coping with their illness. We suggest that it may be worthwhile to expand the scope of phenomenography outside pedagogics. This presupposes a revision of the application to include a wider and more comprehensive description, for instance, of the different ways illness and healthcare phenomena can be experienced, and how these different ways are related to each other, with less focus on hierarchical relations. PMID:25690674

Predictors of Inflammation in a Cohort of Bolivian Infants and Toddlers.

PubMed

Burke, Rachel M; Suchdev, Parminder S; Rebolledo, Paulina A; de Aceituno, Anna M Fabiszewski; Revollo, Rita; Iñiguez, Volga; Klein, Mitchel; Drews-Botsch, Carolyn; Leon, Juan S

2016-10-05

Inflammation has been associated with cardiovascular disease and other health outcomes in children and adults, yet few longitudinal data are available on prevalence and predictors of inflammation in infants. We aimed to identify the prevalence of inflammation in a cohort of Bolivian infants and estimate its association with acute (recent illnesses) and chronic (overweight, stunting) morbidities and potential pathogen exposure (represented by water, sanitation, and hygiene [WASH] resources). We measured plasma concentrations of two acute phase proteins (C-reactive protein [CRP], marking acute inflammation, and alpha(1)-acid-glycoprotein [AGP], marking chronic inflammation) at three time points (target 2, 6-8, and 12-18 months). Of 451 singleton infants enrolled in the parent study, 272 had the first blood draw and complete data. Anthropometry and sociodemographic and recent illness data (2-week recall of cough, diarrhea, and fever) were collected at each visit. Inflammation was defined as CRP > 5 mg/L or AGP > 1 g/L. The prevalence of inflammation increased from early infancy (3% at first blood draw) to later infancy (15-22% at later blood draws). Recent cough, recent fever, and age in months were significantly associated with relative increases in CRP (7-44%) and AGP (5-23%), whereas recent diarrhea was only significantly associated with an increase in CRP (48%). Neither anthropometry nor WASH was significantly associated with inflammation. Results confirm the role of recent acute illness in inflammation in infants, and indicate that adiposity and WASH are not as important to inflammation in this age category. © The American Society of Tropical Medicine and Hygiene.

Care for chronic illness in Australian general practice – focus groups of chronic disease self-help groups over 10 years: implications for chronic care systems reforms

PubMed Central

Martin, Carmel M; Peterson, Chris; Robinson, Rowena; Sturmberg, Joachim P

2009-01-01

Background Chronic disease is a major global challenge. However, chronic illness and its care, when intruding into everyday life, has received less attention in Asia Pacific countries, including Australia, who are in the process of transitioning to chronic disease orientated health systems. Aim The study aims to examine experiences of chronic illness before and after the introduction of Australian Medicare incentives for longer consultations and structured health assessments in general practice. Methods Self-help groups around the conditions of diabetes, epilepsy, asthma and cancer identified key informants to participate in 4 disease specific focus groups. Audio taped transcripts of the focus groups were coded using grounded theory methodology. Key themes and lesser themes identified using a process of saturation until the study questions on needs and experiences of care were addressed. Thematic comparisons were made across the 2002/3 and 1992/3 focus groups. Findings At times of chronic illness, there was need to find and then ensure access to 'the right GP'. The 'right GP or specialist' committed to an in-depth relationship of trust, personal rapport and understanding together with clinical and therapeutic competence. The 'right GP', the main specialist, the community nurse and the pharmacist were key providers, whose success depended on interprofessional communication. The need to trust and rely on care providers was balanced by the need for self-efficacy 'to be in control of disease and treatment' and 'to be your own case manager'. Changes in Medicare appeared to have little penetration into everyday perceptions of chronic illness burden or time and quality of GP care. Inequity of health system support for different disease groupings emerged. Diabetes, asthma and certain cancers, like breast cancer, had greater support, despite common experiences of disease burden, and a need for research and support programs. Conclusion Core themes around chronic illness experience and care needs remained consistent over the 10 year period. Reforms did not appear to alleviate the burden of chronic illness across disease groups, yet some were more privileged than others. Thus in the future, chronic care reforms should build from greater understanding of the needs of people with chronic illness. PMID:19161636

Treatment for childhood acute lymphoblastic leukaemia: the fathers' perspective.

PubMed

McGrath, P

2001-01-01

Research on parental adaptation to a child's chronic illness is still scant, and this is particularly so in relation to the experience of treatment for paediatric Acute Lymphoblastic Leukaemia (ALL). The work that does exist on parental reactions tends to conflate maternal responses with paternal responses, as fathers are usually seen as having a secondary role. Consequently, little is known about how fathers cope with treatment for childhood ALL. The present discussion seeks to make a contribution to this area by presenting findings on the paternal experience of treatment for paediatric ALL from a longitudinal study conducted at Royal Children's Hospital in Brisbane, Queensland. The findings from this research clearly indicate the emotional pain that fathers face in their struggle to accept the diagnosis of a serious, life-threatening illness such as ALL in their child. The findings challenge the notion of the make stereotype by showing that the shock of diagnosis, the emotional pain of coping with the illness, the expression of pain through tears, the desire to be with the child, the struggle to cope with the medical interventions, and concerns about other family members are not gender specific, but are rather issues common to both parents.

Biochemical correlates of neuropsychiatric illness in maple syrup urine disease.

PubMed

Muelly, Emilie R; Moore, Gregory J; Bunce, Scott C; Mack, Julie; Bigler, Don C; Morton, D Holmes; Strauss, Kevin A

2013-04-01

Maple syrup urine disease (MSUD) is an inherited disorder of branched chain amino acid metabolism presenting with neonatal encephalopathy, episodic metabolic decompensation, and chronic amino acid imbalances. Dietary management enables survival and reduces risk of acute crises. Liver transplantation has emerged as an effective way to eliminate acute decompensation risk. Psychiatric illness is a reported MSUD complication, but has not been well characterized and remains poorly understood. We report the prevalence and characteristics of neuropsychiatric problems among 37 classical MSUD patients (ages 5-35 years, 26 on dietary therapy, 11 after liver transplantation) and explore their underlying mechanisms. Compared with 26 age-matched controls, MSUD patients were at higher risk for disorders of cognition, attention, and mood. Using quantitative proton magnetic resonance spectroscopy, we found lower brain glutamate, N-acetylaspartate (NAA), and creatine concentrations in MSUD patients, which correlated with specific neuropsychiatric outcomes. Asymptomatic neonatal course and stringent longitudinal biochemical control proved fundamental to optimizing long-term mental health. Neuropsychiatric morbidity and neurochemistry were similar among transplanted and nontransplanted MSUD patients. In conclusion, amino acid dysregulation results in aberrant neural networks with neurochemical deficiencies that persist after transplant and correlate with neuropsychiatric morbidities. These findings may provide insight into general mechanisms of psychiatric illness.

Paradise regained: how elderly people who are chronically mentally ill reinvent a social self.

PubMed

van Dongen, E

2001-01-01

Throughout their lives, chronic mentally ill people go through a series of disruptive events and periods of suffering. In general, the literature suggests that people with long-standing mental illnesses are extremely vulnerable and cannot maintain themselves without assistance. When old age is added to this mix, the result is a heavy burden for both the patient and the caregiver. While the negative consequences, for both patient and caregiver, of suffering chronic illness during old age must not be ignored, neither should the positive periods in these people's lives. There are times when the mutual identification between cold and young yields vivid examples of the latter's ability to reconstitute a social self. In this paper I look at chronic illness in old age as a struggle on the part of the sufferer to reconcile her/his experiences of suffering in the light of approaching death. I attempt to show that the process of aging with a chronic mental illness involves not only decay and suffering, but also resilience and vitality.

From personal challenge to technical fix: the risks of depersonalised care.

PubMed

Reeve, Joanne; Lynch, Tom; Lloyd-Williams, Mari; Payne, Sheila

2012-03-01

Our research focuses on the complexity of needs associated with distress in people with advanced cancer. We have recently completed a large longitudinal survey exploring the interplay between a number of components of distress, including depression, demoralisation, debility and spirituality, amongst a cohort of people living with terminal cancer. Participants were recruited from 25 hospices across the Northwest of England between 2007-2009. A purposive subsample of 27 people was invited to take part in a qualitative interview to explore in greater depth their personal experiences of living with illness and related distress. Holistic-content analysis revealed two emerging themes: 'personal or personalised care' and 'expectations of truth and certainty'. We discuss these themes in the light of Illich's critique of health care as a 'technical response to a personal challenge'. We highlight the need for further work to explore the impact of organisation of care on personalised need and suggest looking to the chronic illness self-management literature for help in developing future palliative care approaches. © 2011 Blackwell Publishing Ltd.

Nutritional Needs of the Child with a Handicap or Chronic Illness. Manual II: Clinical Nutrition. Presentations from a National Interdisciplinary Symposium.

ERIC Educational Resources Information Center

Ekvall, Shirley M.; Wheby, Elizabeth A.

The following papers were presented at a symposium on clinical nutrition for the child who is chronically ill or handicapped: (1) "Food Allergy"; (2) "Anemia and the Chronically Ill or Handicapped Child"; (3) "Nutrition and Neurotransmitters--Clinical Implications"; (4) "The Importance of Lipid Type in the Diet after Burn Injury"; (5) "Advances of…

The impact of illness-related shame on psychological health and social relationships: Testing a mediational model in students with chronic illness.

PubMed

Trindade, Inês A; Duarte, Joana; Ferreira, Cláudia; Coutinho, Mariana; Pinto-Gouveia, José

2018-05-01

This study explores the impact of illness-related shame on the quality of social relationships and psychological health in chronic patients. We aimed to examine the roles of fear of receiving compassion from others and experiential avoidance as potential mediators of this relationship. Although some studies have demonstrated the negative impact of chronic illness-related shame on psychological functioning, the mechanisms that may underlie this link remain understudied. The sample was comprised by 115 college students, which had been diagnosed with at least 1 chronic illness. Participants completed self-report measures on an online platform. This study's design was cross-sectional. A path analysis was conducted using structural equation modelling. Results showed that the impact of illness-related shame on both psychological health (R 2  = .45) and the quality of social relationships (R 2  = .33) was fully accounted by fear of compassion from others and experiential avoidance. This model revealed an excellent fit. Fear of receiving compassion from others was the main mediator of the illness-related shame link with the quality of social relationships (β = -.22). The main mediator of the association between shame-related chronic illness and psychological health was experiential avoidance (β = -.21).This study shed light on possible psychological mechanisms linking feelings of shame associated with having a chronic condition and impaired social relationships and mental health. On one hand, resisting feelings of compassion and care from others and, on the other hand, avoiding difficult internal experiences and situations that might trigger them seem to underlie the impact of shame on psychological and social functioning in chronic patients. Copyright © 2018 John Wiley & Sons, Ltd.

Pre-travel advice seeking from GPs by travellers with chronic illness seen at a travel clinic.

PubMed

Gagneux-Brunon, Amandine; Andrillat, Carole; Fouilloux, Pascale; Daoud, Fatiha; Defontaine, Christiane; Charles, Rodolphe; Lucht, Frédéric; Botelho-Nevers, Elisabeth

2016-03-01

Travellers are ageing and frequently report chronic illness. Pre-travel health advice is crucial, particularly in this subgroup, and general practitioners (GPs) are first in line for treatment adjustment before departure. Our aim is to evaluate pre-travel health advice seeking from GPs by travellers with chronic illness seen at a travel clinic. A cross-sectional observational survey using a questionnaire was conducted between August 2013 and July 2014 in travellers attending the travel medicine clinic of a tertiary university hospital in France. During the study, 2019 travellers were included. Mean age was 39.4 years (±18.8). Three hundred and ninety-one (19.4%) travellers reported a history of a chronic illness. Arterial hypertension and diabetes mellitus were the most frequently reported illnesses, affecting, respectively, 168 (8.3%) travellers and 102 (5.1%). Hajj pilgrims were more likely to report a history of chronic illness than other travellers. Only 810 (40.1%) travellers sought pre-travel advice from their GP. Six hundred and fifty-two (40.1%) healthy travellers and 158 (40.5%) travellers reporting chronic illness sought pre-travel advice from their GP (P = 0.96). Travellers with a history of chronic illness do not seek pre-travel health advice from their GP more frequently than healthy travellers. Travel health specialists are generally not the best practitioners to manage the care of underlying medical conditions presenting risks during travel. However, GPs offer continuity and disease management expertise to improve the specificity of pre-travel planning. Thus, ongoing collaboration between the traveller, GP and travel health specialist is likely to yield the best outcomes. © International Society of Travel Medicine, 2016. All rights reserved. Published by Oxford University Press. For permissions, please e-mail: journals.permissions@oup.com.

Development of a longitudinal integrated clerkship at an academic medical center.

PubMed

Poncelet, Ann; Bokser, Seth; Calton, Brook; Hauer, Karen E; Kirsch, Heidi; Jones, Tracey; Lai, Cindy J; Mazotti, Lindsay; Shore, William; Teherani, Arianne; Tong, Lowell; Wamsley, Maria; Robertson, Patricia

2011-04-04

In 2005, medical educators at the University of California, San Francisco (UCSF), began developing the Parnassus Integrated Student Clinical Experiences (PISCES) program, a year-long longitudinal integrated clerkship at its academic medical center. The principles guiding this new clerkship were continuity with faculty preceptors, patients, and peers; a developmentally progressive curriculum with an emphasis on interdisciplinary teaching; and exposure to undiagnosed illness in acute and chronic care settings. Innovative elements included quarterly student evaluation sessions with all preceptors together, peer-to-peer evaluation, and oversight advising with an assigned faculty member. PISCES launched with eight medical students for the 2007/2008 academic year and expanded to 15 students for 2008/2009. Compared to UCSF's traditional core clerkships, evaluations from PISCES indicated significantly higher student satisfaction with faculty teaching, formal didactics, direct observation of clinical skills, and feedback. Student performance on discipline-specific examinations and United States Medical Licensing Examination step 2 CK was equivalent to and on standardized patient examinations was slightly superior to that of traditional peers. Participants' career interests ranged from primary care to surgical subspecialties. These results demonstrate that a longitudinal integrated clerkship can be implemented successfully at a tertiary care academic medical center.

Development of a longitudinal integrated clerkship at an academic medical center

PubMed Central

Poncelet, Ann; Bokser, Seth; Calton, Brook; Hauer, Karen E.; Kirsch, Heidi; Jones, Tracey; Lai, Cindy J.; Mazotti, Lindsay; Shore, William; Teherani, Arianne; Tong, Lowell; Wamsley, Maria; Robertson, Patricia

2011-01-01

In 2005, medical educators at the University of California, San Francisco (UCSF), began developing the Parnassus Integrated Student Clinical Experiences (PISCES) program, a year-long longitudinal integrated clerkship at its academic medical center. The principles guiding this new clerkship were continuity with faculty preceptors, patients, and peers; a developmentally progressive curriculum with an emphasis on interdisciplinary teaching; and exposure to undiagnosed illness in acute and chronic care settings. Innovative elements included quarterly student evaluation sessions with all preceptors together, peer-to-peer evaluation, and oversight advising with an assigned faculty member. PISCES launched with eight medical students for the 2007/2008 academic year and expanded to 15 students for 2008/2009. Compared to UCSF's traditional core clerkships, evaluations from PISCES indicated significantly higher student satisfaction with faculty teaching, formal didactics, direct observation of clinical skills, and feedback. Student performance on discipline-specific examinations and United States Medical Licensing Examination step 2 CK was equivalent to and on standardized patient examinations was slightly superior to that of traditional peers. Participants' career interests ranged from primary care to surgical subspecialties. These results demonstrate that a longitudinal integrated clerkship can be implemented successfully at a tertiary care academic medical center. PMID:21475642

Beyond fighting fires and chasing tails? Chronic illness care plans in Ontario, Canada.

PubMed

Russell, Grant; Thille, Patricia; Hogg, William; Lemelin, Jacques

2008-01-01

Recent work has conceptualized new models for the primary care management of patients with chronic illness. This study investigated the experience of family physicians and patients with a chronic illness management initiative that involved the joint formulation of comprehensive individual patient care plans. A qualitative evaluation, framed by phenomenology, immediately followed a randomized controlled trial examining the effect of external facilitators in enhancing the delivery of chronic condition care planning in primary care. The study, set in Ontario family practices, used semistructured in-depth interviews with a purposive sample of 13 family physicians, 20 patients, and all 3 study facilitators. Analysis used independent transcript review and constant comparative methods. Despite the intervention being grounded in patient-centered principles, family physicians generally viewed chronic illness management from a predominantly biomedical perspective. Only a few enthusiasts viewed systematic care planning as a new approach to managing patients with chronic illness. Most family physicians found the strategy to be difficult to implement within existing organizational and financial constraints. For these participants, care planning conflicted with preexisting concepts of their role and of their patient's abilities to become partners in care. The few patients who noticed the process spoke favorably about their experience. Although the experiences of the enthusiastic family physicians were encouraging, we found important individual-level barriers to chronic illness management in primary care. These issues seemed to transcend existing organizational and resource constraints.

A qualitative natural history study of ME/CFS in the community.

PubMed

Anderson, Valerie R; Jason, Leonard A; Hlavaty, Laura E

2014-01-01

In previous qualitative research on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), researchers have focused on the experiences of patients with ME/CFS in tertiary care samples. This qualitative study examined the natural history of people with ME/CFS (n = 19) from a community-based sample. Findings highlighted multilayered themes involving the illness experience and the physical construction of ME/CFS. In addition, this study further illuminated unique subthemes regarding community response and treatment, which have implications for understanding the progression of ME/CFS as well as experiences of those within patient networks. There is a need for more longitudinal qualitative research on epidemiological samples of patients with ME/CFS.

Longitudinal trajectories of benefit finding in adolescents with Type 1 diabetes.

PubMed

Rassart, Jessica; Luyckx, Koen; Berg, Cynthia A; Oris, Leen; Wiebe, Deborah J

2017-10-01

Benefit finding, which refers to perceiving positive life changes resulting from adversity, has been associated with better psychosocial well-being in different chronic illnesses. However, little research to date has examined how benefit finding develops in the context of Type 1 diabetes (T1D). The present study aimed to identify trajectories of benefit finding across adolescence and to investigate prospective associations with depressive symptoms, self-care, and metabolic control. Adolescents with T1D aged 10 to 14 (Mage = 12.49 years, 54% girls) participated in a 4-wave longitudinal study spanning 1.5 years (N = 252 at Time 1). Adolescents filled out questionnaires on benefit finding, self-care, depressive symptoms, and illness perceptions. HbA1c values were obtained through point of care assays. We used latent growth curve modeling (LGCM) and latent class growth analysis (LCGA) to examine the development of benefit finding. Cross-lagged path analysis and multi-group LGCM were used to examine prospective associations among the study variables. Adolescents reported moderate levels of benefit finding which decreased over time. Three benefit finding trajectory classes were identified: low and decreasing, moderate and decreasing, and high and stable. These trajectory classes differed in terms of self-care, perceived personal and treatment control, and perceptions of illness cyclicality. Higher levels of benefit finding predicted relative increases in self-care 6 months later. Benefit finding was not prospectively related to depressive symptoms and metabolic control. Benefit finding may serve as a protective factor for adolescents with Type 1 diabetes and may motivate these adolescents to more closely follow their treatment regimen. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Culture and Chronic Illness: Raising Children with Disabling Conditions in a Culturally Diverse World. Papers presented at an Invitational Conference (Racine, Wisconsin, June 1992).

ERIC Educational Resources Information Center

Pediatrics, 1993

1993-01-01

This special supplement presents two background papers, three working papers, and key recommendations from a conference on culture and chronic illness in childhood. The meeting had as its goal the identification of the state of knowledge on the interface among culture, chronic illness, child development, and family functioning, for the purpose of…

A shared respite—The meaning of place for family well-being in families living with chronic illness

PubMed Central

Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta

2016-01-01

Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as “a shared respite.” This main theme included three subthemes: “a place for relief,” “a place for reflection,” and “a place for re-creation.” These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places. PMID:26956097

A shared respite--The meaning of place for family well-being in families living with chronic illness.

PubMed

Årestedt, Liselott; Benzein, Eva; Persson, Carina; Rämgård, Margareta

2016-01-01

Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as "a shared respite." This main theme included three subthemes: "a place for relief," "a place for reflection," and "a place for re-creation." These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places.

Systematic review of positive youth development programs for adolescents with chronic illness.

PubMed

Maslow, Gary R; Chung, Richard J

2013-05-01

The Positive Youth Development (PYD) framework has been successfully used to support at-risk youth. However, its effectiveness in fostering positive outcomes for adolescents with chronic illness has not been established. We performed a systematic review of PYD-consistent programs for adolescents with chronic illness. Data sources included PubMed, CINAHL, and PsychINFO. Guided by an analytic framework, we searched for studies of PYD-consistent programs serving adolescents and young adults aged 13 through 24 with chronic illness. References were screened iteratively with increasing depth until a focused cohort was obtained and reviewed in full. The authors separately reviewed the studies using structured analysis forms. Relevant study details were abstracted during the review process. Fifteen studies describing 14 programs were included in the analysis. Three comprehensive programs included all 3 core components of a PYD program, including opportunities for youth leadership, skill building, and sustained connections between youth and adults. Four programs were primarily mentoring programs, and 7 others focused on youth leadership. Programs served youth with a variety of chronic illnesses. The quality and type of evaluation varied considerably, with most reporting psychosocial outcomes but only a few including medical outcomes. The PYD-consistent programs identified in this review can serve as models for the development of youth development programs for adolescents with chronic illness. Additional study is needed to evaluate such programs rigorously with respect to both psychosocial and health-related outcomes. PYD-consistent programs have the potential to reach youth with chronic illness and promote positive adult outcomes broadly.

Psychological interventions for mental health disorders in children with chronic physical illness: a systematic review.

PubMed

Bennett, Sophie; Shafran, Roz; Coughtrey, Anna; Walker, Susan; Heyman, Isobel

2015-04-01

Children with chronic physical illness are significantly more likely to develop common psychiatric symptoms than otherwise healthy children. These children therefore warrant effective integrated healthcare yet it is not established whether the known, effective, psychological treatments for symptoms of common childhood mental health disorders work in children with chronic physical illness. EMBASE, MEDLINE, PsycINFO and CINAHL databases were searched with predefined terms relating to evidence-based psychological interventions for psychiatric symptoms in children with chronic physical illness. We included all studies (randomised and non-randomised designs) investigating interventions aimed primarily at treating common psychiatric symptoms in children with a chronic physical illness in the review. Two reviewers independently assessed the relevance of abstracts identified, extracted data and undertook quality analysis. Ten studies (209 children, including 70 in control groups) met the criteria for inclusion in the review. All studies demonstrated some positive outcomes of cognitive behavioural therapy for the treatment of psychiatric symptoms in children with chronic physical illness. Only two randomised controlled trials, both investigating interventions for symptoms of depression, were found. There is preliminary evidence that cognitive behavioural therapy has positive effects in the treatment of symptoms of depression and anxiety in children with chronic physical illness. However, the current evidence base is weak and fully powered randomised controlled trials are needed to establish the efficacy of psychological treatments in this vulnerable population. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Post-millennial trends of socioeconomic inequalities in chronic illness among adults in Germany.

PubMed

Hoebel, Jens; Kuntz, Benjamin; Moor, Irene; Kroll, Lars Eric; Lampert, Thomas

2018-03-27

Time trends in health inequalities have scarcely been studied in Germany as only few national data have been available. In this paper, we explore trends in socioeconomic inequalities in the prevalence of chronic illness using Germany-wide data from four cross-sectional health surveys conducted between 2003 and 2012 (n = 54,197; ages 25-69 years). We thereby expand a prior analysis on post-millennial inequality trends in behavioural risk factors by turning the focus to chronic illness as the outcome measure. The regression-based slope index of inequality (SII) and relative index of inequality (RII) were calculated to estimate the extent of absolute and relative socioeconomic inequalities in chronic illness, respectively. The results for men revealed a significant increase in the extent of socioeconomic inequalities in chronic illness between 2003 and 2012 on both the absolute and relative scales (SII 2003  = 0.06, SII 2012  = 0.17, p-trend = 0.013; RII 2003  = 1.18, RII 2012  = 1.57, p-trend = 0.013). In women, similar increases in socioeconomic inequalities in chronic illness were found (SII 2003  = 0.05, SII 2012  = 0.14, p-trend = 0.022; RII 2003  = 1.14, RII 2012  = 1.40, p-trend = 0.021). Whereas in men this trend was driven by an increasing prevalence of chronic illness in the low socioeconomic group, the trend in women was predominantly the result of a declining prevalence in the high socioeconomic group.

The experiences of chronically ill patients and registered nurses when they negotiate patient care in hospital settings: a feminist poststructural approach: A qualitative study that explores negotiation of patient care between patients and chronically ill patients in hospital settings.

PubMed

Griscti, Odette; Aston, Megan; Martin-Misener, Ruth; Mcleod, Deborah; Warner, Grace

2016-07-01

The aim of this study was to understand the experiences of chronically ill patients and registered nurse in negotiating patient care in hospital. Specifically, we explored how social and institutional discourses shaped power relations and negotiation of patient care. Current literature indicates that although nurses embrace this notion, such partnerships are not easily implemented. Most existing studies focus on the role of the nurse as the leader of the partnership with little attention paid to how social and institutional values, beliefs and practices shape nurse/patient power relations; or how these relationships are negotiated between nurses and patients. The theoretical and methodological approaches used in this study are based on the precepts of Foucault and feminist poststructural theorists. In depth interviews were conducted with eight chronically ill patients and 10 registered nurses. Both nurses and patients commented about the relationships that develop between nurses and chronically ill patients and how these relationships facilitate negotiation of patient care. Both parties described challenging moments and how institutional discourses may hinder positive negotiations of care. In this paper we highlight three themes that emerged: getting to know each other, they are not the sickest patients and finding time to listen. This study offers an innovative way of unpacking negotiation of care between chronically ill patients and registered nurses. It exposes how social and institutional discourses play a pivotal role in shaping negotiations between nurses and chronically ill patients. Negotiating care with chronically ill patients is not as asymmetric as portrayed in some of the literature and tends to be based on mutual agreements between nurses and patients. Nurses make it a point to listen to patients' needs and resist institutional discourses that preclude them from spending time with patients. © 2016 John Wiley & Sons Ltd.

The epidemiology of chronic critical illness in the United States*.

PubMed

Kahn, Jeremy M; Le, Tri; Angus, Derek C; Cox, Christopher E; Hough, Catherine L; White, Douglas B; Yende, Sachin; Carson, Shannon S

2015-02-01

The epidemiology of chronic critical illness is not well characterized. We sought to determine the prevalence, outcomes, and associated costs of chronic critical illness in the United States. Population-based cohort study using data from the United States Healthcare Costs and Utilization Project from 2004 to 2009. Acute care hospitals in Massachusetts, North Carolina, Nebraska, New York, and Washington. Adult and pediatric patients meeting a consensus-derived definition for chronic critical illness, which included one of six eligible clinical conditions (prolonged acute mechanical ventilation, tracheotomy, stroke, traumatic brain injury, sepsis, or severe wounds) plus at least 8 days in an ICU. None. Out of 3,235,741 admissions to an ICU during the study period, 246,151 (7.6%) met the consensus definition for chronic critical illness. The most common eligibility conditions were prolonged acute mechanical ventilation (72.0% of eligible admissions) and sepsis (63.7% of eligible admissions). Among patients meeting chronic critical illness criteria through sepsis, the infections were community acquired in 48.5% and hospital acquired in 51.5%. In-hospital mortality was 30.9% with little change over the study period. The overall population-based prevalence was 34.4 per 100,000. The prevalence varied substantially with age, peaking at 82.1 per 100,000 individuals 75-79 years old but then declining coincident with a rise in mortality before day 8 in otherwise eligible patients. Extrapolating to the entire United States, for 2009, we estimated a total of 380,001 cases; 107,880 in-hospital deaths and $26 billion in hospital-related costs. Using a consensus-based definition, the prevalence, hospital mortality, and costs of chronic critical illness are substantial. Chronic critical illness is particularly common in the elderly although in very old patients the prevalence declines, in part because of an increase in early mortality among potentially eligible patients.

Appraisals, perceived dyadic communication, and quality of life over time among couples coping with prostate cancer.

PubMed

Song, Lixin; Rini, Christine; Ellis, Katrina R; Northouse, Laurel L

2016-09-01

Little research has examined how prostate cancer patients' and their spouses' appraisals of illness and quality of life (QOL) interact with one another. This study examined the interdependent relationships between their appraisals of illness and QOL and if their perceived dyadic communication mediated these relationships. We used the Actor-Partner Interdependence Mediation Model (APIMeM) approach to conduct a secondary analysis of longitudinal data from 124 prostate cancer patient-spouse dyads. We examined actor effects (each person's influence on his/her own outcomes) and partner effects (each person's influence on his/her partner's outcomes). Appraisals of illness, perceived dyadic communication, and QOL were measured using Appraisal of Illness Scale, Lewis Mutuality and Interpersonal Sensitivity Scale, and Functional Assessment of Chronic Illness Therapy General Scale, respectively. Analyses controlled for effects of prostate cancer symptoms and demographic factors. Among actor effects, spouses with more negative appraisals at baseline perceived worse dyadic communication 4 months later (p < .05) and worse QOL 8 months later (p < .001). Patients and spouses who perceived more dyadic communication at 4 months had better QOL at 8 months (p < .01). Among partner effects, there was only weak evidence for an association between patient perceived dyadic communication at 4 months and better spouse QOL at 8 months of follow-up (p = .05). No mediation effects were found. Patients' and spouses' appraisals of the illness and their dyadic communication were associated with their long-term QOL. Interventions that reduce negative appraisals of illness and promote dyadic communication may improve QOL for both patients with prostate cancer and their spouses.

Appraisals, Perceived Dyadic Communication, and Quality of Life Over Time among Couples Coping with Prostate Cancer

PubMed Central

Song, Lixin; Rini, Christine; Ellis, Katrina R.; Northouse, Laurel L.

2016-01-01

Purpose Little research has examined how prostate cancer patients’ and their spouses’ appraisals of illness and quality of life (QOL) interact with one another. This study examined the interdependent relationships between their appraisals of illness and QOL, and if their perceived dyadic communication mediated these relationships. Methods We used the Actor-Partner Interdependence Mediation Model (APIMeM) approach to conduct a secondary analysis of longitudinal data from 124 prostate cancer patient-spouse dyads. We examined actor effects (each person’s influence on his/her own outcomes) and partner effects (each person’s influence on his/her partner’s outcomes). Appraisals of illness, perceived dyadic communication, and QOL were measured using Appraisal of Illness scale, Lewis Mutuality and Interpersonal Sensitivity Scale, and Functional Assessment of Chronic Illness Therapy general scale, respectively. Analyses controlled for effects of prostate cancer symptoms and demographic factors. Results Among actor effects, spouses with more negative appraisals at baseline perceived worse dyadic communication 4-months later (p<.05) and worse QOL 8-months later (p<.001). Patients and spouses who perceived more dyadic communication at 4 months had better QOL at 8 months (p<.01). Among partner effects, there was only weak evidence for an association between patient perceived dyadic communication at 4-months and better spouse QOL at 8 months follow-up (p=.05). No mediation effects were found. Conclusions Patients’ and spouses’ appraisals of the illness and their dyadic communication were associated with their long-term QOL. Interventions that reduce negative appraisals of illness and promote dyadic communication may improve QOL for both patients with prostate cancer and their spouses. PMID:27039207

Time spent on health related activities associated with chronic illness: a scoping literature review.

PubMed

Jowsey, Tanisha; Yen, Laurann; W, Paul Mathews

2012-12-03

The management of health care, particularly for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them. Understanding the non-professional roles in health management requires information about the health related activities (HRA) that are undertaken by patients and informal carers. This understanding allows management planning that incorporates the capacity of patients and informal carers, as well as identifying the particular skills, knowledge and technical support that are necessary. This review was undertaken to identify how much time people with chronic illness and their informal carers spend on HRA. Literature searches of three electronic databases (CINAHL, Medline, and PubMed) and two journals (Time and Society, Sociology of Health and Illness) were carried out in 2011 using the following search terms (and derivatives): chronic illness AND time AND consumer OR carer. The search was aimed at finding studies of time spent on HRA. A scoping literature review method was utilised. Twenty-two peer reviewed articles published between 1990 and 2010 were included for review. The review identified limited but specific studies about time use by people with a chronic illness and/or their carers. While illness work was seen as demanding, few studies combined inquiry about both defined tasks and defined time use. It also identified methodological issues such as consistency of definition and data collection methods, which remain unresolved. While HRA are seen as demanding by people doing them, few studies have measured actual time taken to carry out a comprehensive range of HRA. The results of this review suggest that both patients with chronic illness and informal carers may be spending 2 hours a day or more on HRA. Illnesses such as diabetes may be associated with higher time use. More empirical research is needed to understand the time demands of self-management, particularly for those affected by chronic illness.

The use of mixed methods in studying a chronic illness.

PubMed

Jason, Leonard A; Reed, Jordan

This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches. In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness. Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations.

The Self-Regulation Model of Illness Applied to Smoking Behavior in Lung Cancer

PubMed Central

Browning, Kristine K.; Wewers, Mary Ellen; Ferketich, Amy K.; Otterson, Gregory A.; Reynolds, Nancy R.

2010-01-01

Thirteen to 20% of lung cancer patients continue to smoke after diagnosis. Guided by Self-Regulation theory, the purpose of this study was to examine illness perceptions over time in a sample of lung cancer patients. This prospective one-group descriptive longitudinal design study included participants 18 years or older, with a lung cancer diagnosis within the past 60 days who self-reported smoking within the past 7 days. At baseline patients completed a sociodemographics and tobacco use history questionnaire. The Illness Perception Questionnaire-Revised (IPQ-R) was repeated at 3 time points (baseline, 2–4 weeks, 6 months). Fifty-two participants provided data for the IPQ-R at baseline, 47 at 2–4 weeks, and 29 at 6 months. Differences between mean scores for each illness representation attribute of the IPQ-R at repeated time points were calculated by within-subject repeated measures analysis of variance and Wilcoxon Signed-Rank Tests. Identity (baseline vs. 2–4 weeks: p=0.026; baseline vs. 6 months: p=0.005) and acute/chronic timeline (p=0.018) mean scores significantly increased over time; personal and treatment control mean scores significantly decreased over time (p=0.007 and p=0.047, respectively). Understanding the context in which a patient perceives disease and smoking behavior may contribute to developing interventions that influence behavior change. PMID:19444080

Program for the Chronically Ill.

ERIC Educational Resources Information Center

Schoenherr, Arline; Schnarr, Barbara

The program for chronically ill students in the Detroit public schools is described. Forms are presented listing needed information and implications for teachers of the following conditions: diabetes, sickle cell anemia, chronic renal failure, congenital heart disease, hemophilia, rheumatoid arthritis, asthma, leukemia, and cystic fibrosis. The…

Psychosocial Impact of Terminal Chronic Illness.

ERIC Educational Resources Information Center

Chubon, Robert A.

1988-01-01

Development of a terminal chronic illness creates a spectrum of problems which call for counseling interventions to assist in the individual's adjustment. This overview, intended to raise the consciousness of rehabilitation counselors, outlines the three stages of terminal illness, followed by an examination of resulting lifestyle and relationship…

Illness perceptions or recurrence risk perceptions: What comes first? A longitudinal cross-lagged examination among cardiac patients.

PubMed

Peleg, Shira; Drori, Erga; Banai, Shmuel; Finkelstein, Ariel; Shiloh, Shoshana

2016-05-01

Previous research suggested that illness perceptions provide the basis for illness risk perceptions through an inductive reasoning process. This study aimed to assess the direction of relationships between illness and recurrence risk perceptions over time, among cardiac patients. A longitudinal study was conducted among 138 patients undergoing coronary angioplasty. Self-report questionnaires measured perceived recurrence risk and illness perceptions one day and one month after catheterisation. Cross-lagged Panel Model Analyses revealed that higher perceptions of timeline, consequences and emotional representations of illness at hospitalisation were associated with higher recurrence risk perceptions one month later. Perceived personal control was the only illness perception with bi-directional associations: higher perceived personal control at hospitalisation was associated with higher recurrence risk perceptions one month later; and higher recurrence risk perceptions at hospitalisation was associated with lower personal control one month later. The findings suggest that the associations between recurrence risk and illness perceptions can only partly be explained by inductive reasoning. Halo effects and defensive processes are suggested as complementary explanations for the observed associations between risk and illness perceptions.

Exploring views on satisfaction with life in young children with chronic illness: an innovative approach to the collection of self-report data from children under 11.

PubMed

Christie, Deborah; Romano, Gabriella; Barnes, Jacqueline; Madge, Nicola; Nicholas, David B; Koot, Hans M; Armstrong, Daniel F; Shevlin, Mark; Kantaris, Xenya; Khatun, Hasina; Sutcliffe, Alastair G

2012-01-01

The objective of this study was to explore young children's views on the impact of chronic illness on their life in order to inform future development of a patient-based self-report health outcome measure. We describe an approach to facilitating self-report views from young children with chronic illness. A board game was designed in order to obtain qualitative data from 39 children with a range of chronic illness conditions and 38 healthy controls ranging in age from 3 to 11 years. The format was effective in engaging young children in a self-report process of determining satisfaction with life and identified nine domains. The board game enabled children aged 5-11 years with chronic illness to describe the effects of living with illness on home, family, friends, school and life in general. It generated direct, non-interpreted material from children who, because of their age, may have been considered unable or limited their ability to discuss and describe how they feel. Obtaining this information for children aged 4 and under continues to be a challenge.

The efficacy of a senior outreach program in the reduction of hospital readmissions and emergency department visits among chronically ill seniors.

PubMed

Prior, Michael K; Bahret, Beverly A; Allen, Reva I; Pasupuleti, Sudershan

2012-01-01

This study reports on the effectiveness of a community-based senior outreach program in decreasing rehospitalizations and emergency department visits among chronically ill seniors. Participants had been repeatedly hospitalized with chronic illnesses and were subsequently served in an in-home program designed to address their psychosocial and medical needs. Participation in the program was found to be related to lower hospital readmission rates and emergency department usage. Clients also reported decreased financial concerns and depression and anxiety and increased social support. The study adds to the growing body of work supporting community-based programs as effective strategies for decreasing health care usage and improving quality of life for chronically ill seniors.

Within the web: the family-practitioner relationship in the context of chronic childhood illness.

PubMed

Dickinson, Annette R; Smythe, Elizabeth; Spence, Deb

2006-12-01

This hermeneutic phenomenological study explores the relationship between health professionals and families who have a child with a chronic illness. Study participants included 10 family groups who had a child with a chronic illness and 12 practitioners from the disciplines of nursing, medicine, dietetics, physiotherapy and speech therapy. Data were collected by narrative audiotaped interviewing. The results of this study revealed that chronic childhood illness 'throws' families and practitioners together into a web of relationships, which must work for the sake of the child. However, children are usually excluded from the relationship. To understand and manage the child's illness, practitioners and families 'go around' and act 'in-between' relationships. While the quality of the relationship from the family perspective is not essential, relationships are more successful when practitioners recognize the uniqueness of each family web. The nature of the relationship is often simple, yet it coexists with complexity.

Illness representations as mediators of the relationship between dispositional optimism and depression in patients with chronic tinnitus: a cross-sectional study.

PubMed

Vollmann, Manja; Scharloo, Margreet; Langguth, Berthold; Kalkouskaya, Natallia; Salewski, Christel

2013-01-01

Both dispositional optimism and illness representations are related to psychological health in chronic patients. In a group of chronic tinnitus sufferers, the interplay between these two variables was examined. Specifically, it was tested to what extent the relationship between dispositional optimism and depression is mediated by more positive illness representations. The study had a cross-sectional design. One hundred and eighteen patients diagnosed with chronic tinnitus completed questionnaires assessing optimism (Life Orientation Test-Revised [LOT-R]), illness representations (Illness Perceptions Questionnaire-Revised [IPQ-R]) and depression (Hospital Anxiety and Depression Scale [HADS]). Correlation analysis showed that optimism was associated with more positive illness representations and lower levels of depression. Simple mediation analyses revealed that the relationship between optimism and depression was partially mediated by the illness representation dimensions consequences, treatment control, coherence, emotional representations and internal causes. A multiple mediation analysis indicated that the total mediation effect of illness representations is particularly due to the dimension consequences. Optimism influences depression in tinnitus patients both directly and indirectly. The indirect effect indicates that optimism is associated with more positive tinnitus-specific illness representations which, in turn, are related to less depression. These findings contribute to a better understanding of the interplay between generalised expectancies, illness-specific perceptions and psychological adjustment to medical conditions.

Using Freire's Participatory Educational Method to Understand the Experience of Living With Chronic Illness in the Current Age of Globalization.

PubMed

Camargo Plazas, Maria del Pilar; Cameron, Brenda L

2015-06-01

Many approaches and efforts have been used to better understand chronic diseases worldwide. Yet, little is known about the meaning of living with chronic illness under the pressures of globalization and neoliberal ideologies. Through Freire's participatory educational method, this article presents an innovative approach to understanding the multiple dimensions of living with chronic illness. In this way, we hope to use an innovative approach to address the impact of globalization on the daily life of chronically ill people and thus expand to the body of knowledge on nursing. This article uses Freire's participatory educational method to understand the multiple dimensions of living with chronic illness. This qualitative study follows an interpretive inquiry approach and uses a critical hermeneutic phenomenological method and critical research methodologies. Five participants were recruited for this participatory educational activity. Data collection methods included digitally recorded semistructured individual interviews and a Freire's participatory educational method session. Data analysis included a thematic analysis. Participants reported lacking adequate access to healthcare services because of insurance policies; a general perception that they were an unwanted burden on the healthcare system; and a general lack of government support, advocacy, and political interest. This research activity assisted participants to gain a new critical perspective about the condition of others with chronic diseases and thus provided an enlightening opportunity to learn about the illnesses and experiences of others and to realize that others experienced the same oppression from the healthcare system. Participants became agents of change within their own families and communities. Chronic diseases cause many economic and social consequences in their victims. These findings urge us to move from merely acknowledging the difficulties of people who live with chronic illness in an age of globalization to taking the actions necessary to bring about healthcare, social, and political reform through a process of conscientization and mutual transformation.

A review of factors associated with mental health in siblings of children with chronic illness.

PubMed

Incledon, Emily; Williams, Lauren; Hazell, Trevor; Heard, Todd R; Flowers, Alexandra; Hiscock, Harriet

2015-06-01

This article reviews the literature on modifiable factors associated with mental health in siblings of children with chronic illness. Three clinical databases were searched. A total of 17 studies met the inclusion criteria. Several key themes emerged from the review. Better sibling mental health was associated with camp attendance, perceived parent/peer support, illness education and enhancing control through cognitive coping strategies and routine. Parental and sibling psychoeducation interventions and social support may enhance children's mental health when their sibling has a chronic illness. © The Author(s) 2013.

Economic hardship associated with managing chronic illness: a qualitative inquiry

PubMed Central

Jeon, Yun-Hee; Essue, Beverley; Jan, Stephen; Wells, Robert; Whitworth, Judith A

2009-01-01

Background Chronic illness and disability can have damaging, even catastrophic, socioeconomic effects on individuals and their households. We examined the experiences of people affected by chronic heart failure, complicated diabetes and chronic obstructive pulmonary disease to inform patient centred policy development. This paper provides a first level, qualitative understanding of the economic impact of chronic illness. Methods Interviews were conducted with patients aged between 45 and 85 years who had one or more of the index conditions and family carers from the Australian Capital Territory and Western Sydney, Australia (n = 66). Content analysis guided the interpretation of data. Results The affordability of medical treatments and care required to manage illness were identified as the key aspects of economic hardship, which compromised patients' capacity to proactively engage in self-management and risk reduction behaviours. Factors exacerbating hardship included ineligibility for government support, co-morbidity, health service flexibility, and health literacy. Participants who were on multiple medications, from culturally and linguistically diverse or Indigenous backgrounds, and/or not in paid employment, experienced economic hardship more harshly and their management of chronic illness was jeopardised as a consequence. Economic hardship was felt among not only those ineligible for government financial supports but also those receiving subsidies that were insufficient to meet the costs of managing long-term illness over and above necessary daily living expenses. Conclusion This research provides insights into the economic stressors associated with managing chronic illness, demonstrating that economic hardship requires households to make difficult decisions between care and basic living expenses. These decisions may cause less than optimal health outcomes and increased costs to the health system. The findings support the necessity of a critical analysis of health, social and welfare policies to identify cross-sectoral strategies to alleviate such hardship and improve the affordability of managing chronic conditions. In a climate of global economic instability, research into the economic impact of chronic illness on individuals' health and well-being and their disease management capacity, such as this study, provides timely evidence to inform policy development. PMID:19818128

Effects of loneliness on illness perception in persons with a chronic disease.

PubMed

Özkan Tuncay, Fatma; Fertelli, Tülay; Mollaoğlu, Mukadder

2018-04-01

To determine the effects of loneliness on illness perception in persons with a chronic disease. How an illness is perceived not only affects all dimensions of a person's life but also plays an important role in his/her coping with the complications and consequences of the disease. One of the factors that influence the illness perception is loneliness. The study is a descriptive study. The study sample included 206 individuals over the 18 years of age, conscious, having had a chronic illness at least 1 year, having no communication problems and agreeing to participate in the study after being informed about the study. Data were collected with the Personal Information Form, the Illness Perception Questionnaire and the University of California Los Angeles Loneliness Scale. The forms were administered to the participants in an unoccupied patient room, and the data were collected through face-to-face interviews. The results of the study revealed that individuals with a chronic disease perceived emotional symptoms accompanying the disease more intensely that they accepted their disease was a chronic one and that their personal control and treatment control of the disease were at a middle level. The mean score the participants obtained from the University of California Los Angeles Loneliness Scale was 38.49 ± 11.15. There was a significant negative correlation between this mean score and the mean scores obtained from the following subscales consequences, treatment control, illness perception and emotional representations. In this study, it was concluded that the participants perceived their loneliness level as moderate and that their illness perception was negatively affected as their loneliness levels increased. The knowledge of clinical nurses about perception of patients with chronic illnesses and conditions affecting that perception will enhance compliance with the illness management or treatment strategies. Clinical nurses should observe residents closely for signs of depression and loneliness and support their sense of coherence to reduce emotional and social loneliness. © 2018 John Wiley & Sons Ltd.

Spouse Health Status, Depressed Affect, and Resilience in Mid and Late Life: A Longitudinal Study

ERIC Educational Resources Information Center

Bookwala, Jamila

2014-01-01

This study used longitudinal data to examine the effects of spousal illness on depressive symptoms among middle-aged and older married individuals and the extent to which the adverse effects of illness in a spouse were mitigated by 2 psychological resources, mastery and self-esteem. Using 1,704 married participants who were 51 years of age on…

Understanding stigma in chronic health conditions: implications for nursing.

PubMed

Engebretson, Joan

2013-10-01

This article explores the social processes in stigmatization and the theoretical background on the impact in chronic illness. Review of literature from social sciences and applications to health issues. Understanding the social utility of stigmatization in preserving social cohesion and protecting the social order is an important function. However, this process can be harmful when applied to persons with chronic illness, such as HIV-AIDS, and psychiatric illness. These individuals often become shamed, ostracized, isolated, discredited, and socially and economically marginalized. Recent theoretical work on stigma has identified several issues and patient responses that may have implications in many other chronic conditions. Stigma is based on visible or nonvisible health conditions and can be both externally imposed or perceived in a process of self-stigma. Understanding stigma can aid clinicians in providing supportive help for patients with chronic illness. Stigma has been well researched in a few chronic illnesses; however, future studies in other conditions are much needed. Recognizing the underlying social factors has potential use in health-promoting behaviors. Sensitivity to stigma allows health professionals to critically reflect on ways the healthcare environment may add to stigma for their patients. ©2013 The Author(s) ©2013 American Association of Nurse Practitioners.

Illness Perception and Information Behaviour of Patients with Rare Chronic Diseases

ERIC Educational Resources Information Center

Katavic, Snježana Stanarevic; Tanackovic, Sanjica Faletar; Badurina, Boris

2016-01-01

Introduction: This study examined possible correlations between health information behaviour and illness perception among patients with rare chronic diseases. Illness perception is related to coping strategies used by patients, and some health information behaviour practices may be associated with better coping and more positive perception of…

A Therapeutic Approach for Treating Chronic Illness and Disability among College Students

ERIC Educational Resources Information Center

Haemmelmann, Katie L.; McClain, Mary-Catherine

2013-01-01

Research in chronic illness and disability (CID) in college students has demonstrated that students with disabilities encounter more difficulties psychosocially than their nondisabled counterparts. Subsequently, these difficulties impact the ability of these students to successfully adapt. Using the illness intrusiveness model in combination with…

Coping strategies in episodic and chronic tension-type headache.

PubMed

Rollnik, J D; Karst, M; Fink, M; Dengler, R

2001-03-01

To study the importance of coping with illness strategies in tension-type headache (TTH). The pathophysiology of TTH is complex, and coping with illness strategies might contribute to the transformation to a chronic form. We examined 89 subjects (mean age, 45.6 +/- 14.8 years; range, 18 to 72 years) with episodic (n = 37) and chronic (n = 52) TTH. Patients were required to fill in a Freiburg Questionnaire of Coping with Illness (FQCI), a von Zerssen Depression Scale, quality-of-life questionnaires, and a headache home diary (over 4 weeks). In addition, pressure pain thresholds (temporal muscles) and total tenderness scores were obtained. Patients with chronic TTH exhibited poorer quality-of-life measures, slightly more depressive symptoms, and significantly stronger avoidance behavior and endurance strategies on FQCI scales F4 and F5 (P< .05). There was no difference between episodic and chronic TTH with respect to measures of muscle tenderness or pain thresholds. We conclude that disadvantageous coping with illness strategies might contribute to a transformation to chronic TTH.

Health and exercise-related medical issues among 1,212 ultramarathon runners: baseline findings from the Ultrarunners Longitudinal TRAcking (ULTRA) Study.

PubMed

Hoffman, Martin D; Krishnan, Eswar

2014-01-01

Regular exercise is associated with substantial health benefits; however, little is known about the health impact of extreme levels of exercise. This study examined the prevalence of chronic diseases, health-care utilization, and risk factors for exercise-related injuries among ultramarathon runners. Retrospective, self-reported enrollment data from an ongoing longitudinal observational study of 1,212 active ultramarathon runners were analyzed. The most prevalent chronic medical conditions were allergies/hay fever (25.1%) and exercise-induced asthma (13.0%), but there was a low prevalence of serious medical issues including cancers (4.5%), coronary artery disease (0.7%), seizure disorders (0.7%), diabetes (0.7%), and human immunodeficiency virus (HIV) infection (0.2%). In the year preceding enrollment, most (64.6%) reported an exercise-related injury that resulted in lost training days (median of 14 days), but little nonattendance of work or school due to illness, injury, or exercise-related medical conditions (medians of 0 days for each). The knee was the most common area of exercise-related injury. Prior year incidence of stress fractures was 5.5% with most (44.5%) involving the foot. Ultramarathon runners who sustained exercise-related injuries were younger (p<0.001) and less experienced (p<0.01) than those without injury. Stress fractures were more common (p<0.01) among women than men. We conclude that, compared with the general population, ultramarathon runners appear healthier and report fewer missed work or school days due to illness or injury. Ultramarathon runners have a higher prevalence of asthma and allergies than the general population, and the prevalence of serious medical issues was nontrivial and should be recognized by those providing medical care to these individuals. Ultramarathon runners, compared with shorter distance runners, have a similar annual incidence of exercise-related injuries but higher proportion of stress fractures involving the foot, and it is the younger and less experienced ultramarathoners who appear most at risk for injury.

Health and Exercise-Related Medical Issues among 1,212 Ultramarathon Runners: Baseline Findings from the Ultrarunners Longitudinal TRAcking (ULTRA) Study

PubMed Central

Hoffman, Martin D.; Krishnan, Eswar

2014-01-01

Regular exercise is associated with substantial health benefits; however, little is known about the health impact of extreme levels of exercise. This study examined the prevalence of chronic diseases, health-care utilization, and risk factors for exercise-related injuries among ultramarathon runners. Retrospective, self-reported enrollment data from an ongoing longitudinal observational study of 1,212 active ultramarathon runners were analyzed. The most prevalent chronic medical conditions were allergies/hay fever (25.1%) and exercise-induced asthma (13.0%), but there was a low prevalence of serious medical issues including cancers (4.5%), coronary artery disease (0.7%), seizure disorders (0.7%), diabetes (0.7%), and human immunodeficiency virus (HIV) infection (0.2%). In the year preceding enrollment, most (64.6%) reported an exercise-related injury that resulted in lost training days (median of 14 days), but little nonattendance of work or school due to illness, injury, or exercise-related medical conditions (medians of 0 days for each). The knee was the most common area of exercise-related injury. Prior year incidence of stress fractures was 5.5% with most (44.5%) involving the foot. Ultramarathon runners who sustained exercise-related injuries were younger (p<0.001) and less experienced (p<0.01) than those without injury. Stress fractures were more common (p<0.01) among women than men. We conclude that, compared with the general population, ultramarathon runners appear healthier and report fewer missed work or school days due to illness or injury. Ultramarathon runners have a higher prevalence of asthma and allergies than the general population, and the prevalence of serious medical issues was nontrivial and should be recognized by those providing medical care to these individuals. Ultramarathon runners, compared with shorter distance runners, have a similar annual incidence of exercise-related injuries but higher proportion of stress fractures involving the foot, and it is the younger and less experienced ultramarathoners who appear most at risk for injury. PMID:24416176

Loving your child to death: Considerations of the care of chronically ill children and euthanasia in Emil Sher’s Mourning Dove

PubMed Central

Mukhida, Karim

2007-01-01

How do parents cope when their child is ill or dying, and when he or she is experiencing constant pain or suffering? What do parents think of the contributions that medical professionals make to the care of their chronically or terminally ill child? Is it possible for a parent to love a child so much that they wish their child to be dead? The purpose of the present paper is to explore these questions and aspects of the care of chronically or terminally ill children using Mourning Dove’s portrayal of one family’s attempt to care for their ill daughter. Mourning Dove, a play written by Canadian playwright Emil Sher, was inspired by the case of Saskatchewan wheat farmer Robert Latimer who killed his 12-year-old daughter, Tracy, who suffered with cerebral palsy and had begun to experience tremendous pain. Rather than focusing on the medical or legal aspects of the care of a chronically ill child, the play offers a glimpse into how a family copes with the care of such a child and the effect the child’s illness has on the family. The reading and examination of nonmedical literature, such as Mourning Dove, serves as a useful means for medical professionals to better understand how illness affects and is responded to by patients and their families. This understanding is a prerequisite for them to be able to provide complete care of children with chronic or terminal illnesses and their families. PMID:19043501

Pilot undergraduate course teaches students about chronic illness in children: an educational intervention study.

PubMed

Montenegro, Roberto E; Birnie, Krista D; Fisher, Paul Graham; Dahl, Gary V; Binkley, John; Schiffman, Joshua D

2014-01-01

Recent data question whether medical education adequately prepares physicians to care for the growing number of children with chronic medical conditions. We describe a 10-week course designed to provide undergraduate students with the knowledge and skills required to understand and care for children with chronic or catastrophic illnesses. The course presented the illness experience from the child's perspective and thus presented information in a manner that was efficient, conducive, and memorable. The curriculum was designed like a graduate-level seminar that included workshops, lectures, readings, writing, and lively discussions. This is an educational intervention study that used survey data to assess changes in attitudes among and between participants completing this course versus students not exposed to this course. We used Somers' D test and Fisher's z-transformation to perform both pre- and post-nonparametric comparisons. Course participants were more likely to change their attitudes and agree that chronically ill children "feel comfortable talking with their peers about their condition" (P=0.003) and less likely to agree that these children "want to be treated differently," "want more sympathy," or "care less about romantic relationships" (P = 0.003, 0.002 and 0.02, respectively). Controls were more likely to continue to agree that chronically ill children "want to be treated differently" (P = 0.009) and "care less about romantic relationships" (P = 0.02), and less likely to agree that these children "talk openly" or "feel comfortable talking with their peers about their condition" (P = 0.04). This classroom-based course serves as a feasible and cost-effective model for universities and medical schools to aid in improving student attitudes toward treating chronically ill children. The course provides the unique opportunity to learn directly from those who care for and those who have lived with chronic illness.

Understanding the school experiences of children and adolescents with serious chronic illness: a systematic meta-review.

PubMed

Lum, A; Wakefield, C E; Donnan, B; Burns, M A; Fardell, J E; Marshall, G M

2017-09-01

Serious chronic illness can have a detrimental effect on school attendance, participation and engagement, leaving affected students at risk of failing to meet their developmental potential. An improved understanding of factors that help to explain or mitigate this risk can help educators and health professionals deliver the most effective support. This meta-review critiqued the available evidence examining the link between six chronic illnesses (asthma, cancer, chronic kidney diseases, heart diseases, cystic fibrosis and gastrointestinal diseases) and children's and adolescents' school experiences and outcomes, as well as investigating the medical, school, psychosocial and sociodemographic factors that are linked to poorer or better school outcomes. We searched CINAHL, Cochrane Database, EMBASE, ERIC, MEDLINE, ProQuest Theses and Dissertations, and PsycINFO (2000-2015). Systematic and narrative reviews, and meta-analyses, of original studies examining students' subjective school experiences and objective school outcomes were eligible. We used the Preferred Reporting Items for Systematic Reviews and Meta-analyses criteria to critically appraise all systematic reviews. The Grading of Recommendations Assessment, Development, and Evaluation system guided our recommendations for practice and research. Eighteen reviews of 172 studies including more than 40 000 students were eligible. Therefore, we chose to conduct a meta-review to provide an overview of the literature on the relationship between chronic illness and school experiences and outcomes. We also explored the associated medical, school, psychosocial and sociodemographic factors affecting the relationship between illness and school experiences and outcomes. Students with chronic illness demonstrate mixed school experiences and outcomes that are often worse than students without chronic illness. Modifiable factors, such as students' engagement with school, may be novel yet appropriate targets of educational support to ensure that these students reach their full schooling potential. © 2017 John Wiley & Sons Ltd.

Retinal imaging as a source of biomarkers for diagnosis, characterization and prognosis of chronic illness or long-term conditions

PubMed Central

Trucco, E; Cameron, J R; Dhillon, B; Houston, J G; van Beek, E J R

2014-01-01

The black void behind the pupil was optically impenetrable before the invention of the ophthalmoscope by von Helmholtz over 150 years ago. Advances in retinal imaging and image processing, especially over the past decade, have opened a route to another unexplored landscape, the retinal neurovascular architecture and the retinal ganglion pathways linking to the central nervous system beyond. Exploiting these research opportunities requires multidisciplinary teams to explore the interface sitting at the border between ophthalmology, neurology and computing science. It is from the detail and depth of retinal phenotyping that novel metrics and candidate biomarkers are likely to emerge. Confirmation that in vivo retinal neurovascular measures are predictive of microvascular change in the brain and other organs is likely to be a major area of research activity over the next decade. Unlocking this hidden potential within the retina requires integration of structural and functional data sets, that is, multimodal mapping and longitudinal studies spanning the natural history of the disease process. And with further advances in imaging, it is likely that this area of retinal research will remain active and clinically relevant for many years to come. Accordingly, this review looks at state-of-the-art retinal imaging and its application to diagnosis, characterization and prognosis of chronic illness or long-term conditions. PMID:24936979

Patients understanding of depression associated with chronic physical illness: a qualitative study

PubMed Central

2014-01-01

Background Detection of depression can be difficult in primary care, particularly when associated with chronic illness. Patient beliefs may affect detection and subsequent engagement with management. We explored patient beliefs about the nature of depression associated with physical illness. Methods A qualitative interview study of patients registered with general practices in Leeds, UK. We invited patients with coronary heart disease or diabetes from primary care to participate in semi-structured interviews exploring their beliefs and experiences. We analysed transcripts using a thematic approach, extended to consider narratives as important contextual elements. Results We interviewed 26 patients, including 17 with personal experience of depression. We developed six themes: recognising a problem, complex causality, the role of the primary care, responsibility, resilience, and the role of their life story. Participants did not consistently talk about depression as an illness-like disorder. They described a change in their sense of self against the background of their life stories. Participants were unsure about seeking help from general practitioners (GPs) and felt a personal responsibility to overcome depression themselves. Chronic illness, as opposed to other life pressures, was seen as a justifiable cause of depression. Conclusions People with chronic illness do not necessarily regard depression as an easily defined illness, especially outside of the context of their life stories. Efforts to engage patients with chronic illness in the detection and management of depression may need further tailoring to accommodate beliefs about how people view themselves, responsibility and negative views of treatment. PMID:24555886

Race, unemployment rate, and chronic mental illness: a 15-year trend analysis.

PubMed

Lo, Celia C; Cheng, Tyrone C

2014-07-01

Before abating, the recession of the first decade of this century doubled the US unemployment rate. High unemployment is conceptualized as a stressor having serious effects on individuals' mental health. Data from surveys administered repeatedly over 15 years (1997-2011) described changes over time in the prevalence of chronic mental illness among US adults. The data allowed us to pinpoint changes characterizing the White majority--but not Black, Hispanic, or Asian minorities--and to ask whether such changes were attributable to economic conditions (measured via national unemployment rates). We combined 1.5 decades' worth of National Health Interview Survey data in one secondary analysis. We took social structural and demographic factors into account and let adjusted probability of chronic mental illness indicate prevalence of chronic mental illness We observed, as a general trend, that chronic mental illness probability increased as the unemployment rate rose. A greater increase in probability was observed for Blacks than Whites, notably during 2007-2011, the heart of the recession Our results confirmed that structural risk posed by the recent recession and by vulnerability to the recession's effects was differentially linked to Blacks. This led to the group's high probability of chronic mental illness, observed even when individual-level social structural and demographic factors were controlled. Future research should specify the particular kinds of vulnerability that created the additional disadvantage experienced by Black respondents.

Perceptions of chronically ill and healthy consumers about electronic personal health records: a comparative empirical investigation.

PubMed

Cocosila, Mihail; Archer, Norm

2014-07-23

To develop a model of consumer perceptions of electronic personal health records (PHRs) and validate it in a comparative study between consumers who report having a chronic illness and those who report being well. A model of PHR use motivators and barriers was built and tested through a national survey across Canada. Data were collected from 800 individuals, 18 years or older. Half reported having a chronic illness or disability and half reported being well. Analyses were performed with structural equation modelling techniques. A total of 389 answers from chronically ill and 383 from well participants were collected. Perceived usefulness was the key explanation of the intention to use PHRs for both ill and well people (total effect of 0.601 and 0.565, respectively) followed by security, privacy and trust in PHRs (total effect of 0.377 and 0.479, respectively). Conversely, computer anxiety was perceived as a significant barrier (total effect of -0.327 for ill individuals and -0.212 for well individuals). The model proposed was appropriate in explaining key consumer positive and negative perceptions on electronic PHR use. We found little difference in perceptions of electronic PHRs between chronically ill and well individuals, although self-reporting their health status might have influenced the results. To increase the adoption rate of electronic PHRs among both chronically ill and well consumers it is necessary to reinforce consumer perceptions of the usefulness of and trust in these eHealth technologies while mitigating their anxieties about computer use in general. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Experiences of coexisting with chronic illnesses among elderly women in communities.

PubMed

Chang, Yu-Mei; Tsao, Lee-Ing; Huang, Min-His

2014-01-01

Based on the increasing numbers of women in the aging population, the health of women will become critical in the future. Our purpose in this study was to analyze the experiences of elderly women with chronic illness. Twelve elderly Taiwanese women participated in in-depth interviews. "Using my own power out of the disease shackle" was the core category referring to elderly women who coexist with chronic illnesses. Elderly women should be provided with individually targeted plans for disease management and health maintenance to enable them to participate in health care decisions at the onset of chronic diseases.

The private struggle of mothers with asthma: a gender perspective on illness management.

PubMed

van Mens-Verhulst, Janneke; Radtke, H Lorraine; Spence, Cheryl D

2004-07-01

Little attention has been paid to the specific problems of mothers with chronic illness. In this study of mothers with asthma, we asked the question: "how do they manage their illness"? We interviewed a purposive sample of four Dutch and four Canadian mothers living with asthma and varying in age and socio-economic class. Our analysis explored challenges the mothers face, three main strategies of non-medical illness management (prevention, normalization and mobilizing support), and the influence of age and class differences. Unhealthy cycles of living with asthma are identified and suggestions for mother-specific interventions are offered. By drawing attention to the gendered nature of chronic illness management and to patients' own experiences, a more useful frame of reference is created for professionals who do not have first hand knowledge of living with a chronic illness.

Mothers' perceptions of sibling adjustment and family life in childhood chronic illness.

PubMed

Gallo, A M; Breitmayer, B J; Knafl, K A; Zoeller, L H

1993-10-01

Researchers who study the effects of chronic illness on well siblings have generally focused on individual characteristics and their relationships with psychological adjustment. More recently, researchers suggest that sibling adjustment can be best understood within the context of the family. The purpose of this study was to examine variations in sibling behavioral adjustment in relation to mothers' perceptions of the illness experience and family life. Based on mothers' ratings on the behavior problem scale of the Child Behavior Checklist (CBCL), five siblings considered poorly adjusted and five very well-adjusted siblings were compared with respect to mothers' reports of individual family member's response to illness, illness management, parenting philosophy, presence of other stressors, availability of social supports, and impact of illness on family members and family life. Two major differences were found between mothers who rated healthy siblings either poorly or very well adjusted: (a) effects of illness on the healthy sibling, the ill child, and the marital relationship and (b) perceived controllability of the chronic illness. Devising ways of helping mothers feel confident in managing their child's illness is integral to creating an environment that promotes optimal development of their ill child and the child's siblings.

Association between nutritional status and subjective health status in chronically ill children attending special schools.

PubMed

Joosten, Koen; van der Velde, Kelly; Joosten, Pieter; Rutten, Hans; Hulst, Jessie; Dulfer, Karolijn

2016-04-01

In hospitalized children with a chronic disease, malnutrition was associated with a lower subjective health status. In outpatient children with a chronic disease attending special schools, this association has never been studied. The aim of this study was to assess the association between nutritional status and subjective health status in chronically ill children attending special schools. Overall, 642 children, median age 9.8 years (IQR 7.7-11.5), 60 % male, 72 % Caucasian, were included in this prospective study in nine special schools for chronically ill children in the Netherlands. Overall malnutrition was assessed as: acute malnutrition (<-2 SDS for weight for height (WFH)) and chronic malnutrition (<-2 SDS for height for age). The malnutrition risk was assessed with the nutritional risk-screening tool STRONGkids. Subjective health status was assessed with EQ-5D. Overall, 16 % of the children had overall malnutrition: 3 % acute and 13 % chronic malnutrition. Nurses reported 'some/severe problems' on the health status dimensions mobility (15 %), self-care (17 %), usual activities (19 %), pain/discomfort (22 %), and anxiety/depression (22 %) in chronically ill children. Their mean visual analogue scale score (VAS) was 73.0 (SD 11.1). Malnutrition, medication usage, and younger age explained 38 % of the variance of the VAS score. The presence of overall malnutrition in chronically ill children attending special schools was associated with lower subjective health status, especially in younger children and in those with chronic medication usage. Therefore, it is important to develop and use profile-screening tools to identify these children.

Childhood trauma and chronic illness in adulthood: mental health and socioeconomic status as explanatory factors and buffers.

PubMed

Mock, Steven E; Arai, Susan M

2010-01-01

Experiences of traumatic events in childhood have been shown to have long-term consequences for health in adulthood. With data from the 2005 Canadian Community Health Survey we take a life course perspective of cumulative disadvantage and examine the potential role of mental health and socioeconomic status in adulthood as multiple mediators of the link between childhood trauma and chronic illness in adulthood. Mental health and socioeconomic status are also tested as buffers against the typically adverse consequences of childhood trauma. The results suggest mental health and socioeconomic status partially explain the association of childhood trauma with chronic illness in adulthood, with mental health showing a stronger effect. In addition, an analysis of the interactions suggested higher socioeconomic status is a potential protective factor for those with a history of trauma. Results also suggest cumulative disadvantage following trauma may lead to chronic illness and suggest the need for public health expenditures on resources such as counseling and income supports to prevent or reduce psychological harm and chronic illness resulting from traumatic events.

Rethinking 'risk' and self-management for chronic illness.

PubMed

Morden, Andrew; Jinks, Clare; Ong, Bie Nio

2012-02-01

Self-management for chronic illness is a current high profile UK healthcare policy. Policy and clinical recommendations relating to chronic illnesses are framed within a language of lifestyle risk management. This article argues the enactment of risk within current UK self-management policy is intimately related to neo-liberal ideology and is geared towards population governance. The approach that dominates policy perspectives to 'risk' management is critiqued for positioning people as rational subjects who calculate risk probabilities and act upon them. Furthermore this perspective fails to understand the lay person's construction and enactment of risk, their agenda and contextual needs when living with chronic illness. Of everyday relevance to lay people is the management of risk and uncertainty relating to social roles and obligations, the emotions involved when encountering the risk and uncertainty in chronic illness, and the challenges posed by social structural factors and social environments that have to be managed. Thus, clinical enactments of self-management policy would benefit from taking a more holistic view to patient need and seek to avoid solely communicating lifestyle risk factors to be self-managed.

77 FR 64597 - Proposed Information Collection (Survey of Chronic Gastrointestinal Illness in Persian Gulf...

Federal Register 2010, 2011, 2012, 2013, 2014

2012-10-22

... information needed to evaluate chronic gastrointestinal disorders in Persian Gulf War Veterans. DATES: Written... deployed in the first Persian Gulf War returned with persistent gastrointestinal symptoms, typical of... of Chronic Gastrointestinal Illness in Persian Gulf Veterans (Irritable Bowel Syndrome--Diarrhea...

Self-stigma and suicidality: a longitudinal study.

PubMed

Oexle, Nathalie; Rüsch, Nicolas; Viering, Sandra; Wyss, Christine; Seifritz, Erich; Xu, Ziyan; Kawohl, Wolfram

2017-06-01

Mental illness stigma is a source of distress for persons with mental illness. Self-stigma occurs when negative stereotypes are internalized, leading to low self-esteem, shame and hopelessness. Due to its consequences self-stigma may contribute to suicidality and be a modifiable target for suicide prevention. Based on 222 disability pensioners with mental illness we examined whether self-stigma at baseline is associated with suicidal ideation over a 2-year period, controlling for baseline suicidal ideation, symptoms, age and gender. More self-stigma predicted suicidal ideation at baseline and longitudinally. Interventions on different levels to reduce self-stigma could improve suicide prevention.

Modifiable correlates of illness perceptions in adults with chronic somatic conditions: A systematic review.

PubMed

Arat, Seher; De Cock, Diederik; Moons, Philip; Vandenberghe, Joris; Westhovens, René

2018-04-01

When individuals become ill, they want to understand and give meaning to their illness. The interpretation of this illness experience, or illness perception, is influenced by a range of individual, contextual, and cultural factors. Some of these factors may be modifiable by nursing interventions. The purpose of this systematic review was to investigate which modifiable factors were correlated with illness perceptions across studies of adults with different chronic somatic diseases. Using search terms tailored to each of four electronic databases, studies retrieved were reviewed by two independent evaluators, and each relevant article was assessed for methodological quality. Results were standardized by calculating correlation coefficients. Fifteen papers on illness perceptions in a variety of chronic diseases met the inclusion criteria. All used standardized measures of illness perceptions. We identified five groups of modifiable correlates of illness perceptions: illness-related factors, psychosocial factors, medication beliefs, information provision and satisfaction with information received, and quality of care. Our findings add to the knowledge of modifiable factors correlated with illness perceptions, including the importance of illness-related factors and psychosocial factors such as anxiety and depression. Knowledge of these correlates can facilitate understanding of patients' illness perceptions and might be useful in tailoring patient education programs. © 2018 Wiley Periodicals, Inc.

Does the Size of the Effect of Adverse Events at High Ages on Daily-Life Physical Functioning Depend on the Economic Conditions Around Birth?

PubMed

Scholte, Robert; van den Berg, Gerard J; Lindeboom, Maarten; Deeg, Dorly J H

2017-01-01

This paper considers determinants of physical functional limitations in daily-life activities at high ages. Specifically, we quantify the extent to which the impact of adverse life events on this outcome is larger in case of exposure to adverse economic conditions early in life. Adverse life events include bereavement, severe illness in the family, and the onset of chronic diseases. We use a longitudinal data set of individuals born in the first decades of the 20th century. The business cycle around birth is used as an indicator of economic conditions early in life. We find that the extent to which functional limitations suffer from the onset of chronic diseases is larger if the individual was born in a recession. The long-run effect of economic conditions early in life on functional limitations at high ages runs primarily via this life event. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

Mothers' Attributions Regarding the Behavior of Chronically Ill Children.

ERIC Educational Resources Information Center

Walker, Lynn S.

Parents of chronically ill children are faced with the difficult task of being vigilant and yet not overprotective of their children. The literature suggests that parents hold a positive bias toward their ill children. Attribution theory gives a framework in which to study parents' ideas about their children's behavior. A study was conducted to…

Health, Health Beliefs, and Body Image in School-Aged Girls.

ERIC Educational Resources Information Center

Johnson, Melissa Ramirez

When Spielberger's State-Trait Anxiety Scale was administered to 26 healthy and 26 chronically ill children, it was found that the chronically ill were significantly more anxious than the healthy. Results also suggested that the question of sex differences in children's emotional response to illness deserves further investigation in studies…

A Dyadic Approach: Applying a Developmental-Conceptual Model to Couples Coping with Chronic Illness

ERIC Educational Resources Information Center

Checton, Maria G.; Magsamen-Conrad, Kate; Venetis, Maria K.; Greene, Kathryn

2015-01-01

The purpose of the present study was to apply Berg and Upchurch's developmental-conceptual model toward a better understanding of how couples cope with chronic illness. Specifically, a model was hypothesized in which proximal factors (relational quality), dyadic appraisal (illness interference), and dyadic coping (partner support) influence…

Profiles of Chronic Illness Knowledge in a Community Sample of American Adults

ERIC Educational Resources Information Center

Jackson, Todd

2009-01-01

The author identified profiles of chronic illness knowledge (i.e., heart disease, cancer, diabetes) in a community sample of American adults and examined the effect of sociodemographic influences on relations of illness knowledge to health practices and well-being. Participants were 181 women and 120 men who completed measures of illness…

Return Migration among Elderly, Chronically Ill Bosnian Refugees: Does Health Matter?

PubMed Central

Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian; Kristiansen, Maria; Norredam, Marie Louise

2015-01-01

Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO’s definition of health, health was indeed one of the most important factors when the decision to return was made. PMID:26473899

Return Migration among Elderly, Chronically Ill Bosnian Refugees: Does Health Matter?

PubMed

Handlos, Line Neerup; Olwig, Karen Fog; Bygbjerg, Ib Christian; Kristiansen, Maria; Norredam, Marie Louise

2015-10-12

Elderly migrants constitute a considerable share of global return migration; nevertheless, literature on the health aspects of the return migration among these migrants is still scarce. This study explores the significance of return migration among elderly, chronically ill Bosnian refugees from Denmark and the role of health issues in their decision to return. It is based on semi-structured interviews with 33 elderly, chronically ill Bosnian refugees who have moved back to Bosnia and Herzegovina, and 10 elderly, chronically ill Bosnian refugees who have remained in Denmark. The interviews show that physical health, in the sense of the absence of illness and easy access to necessary health-care services and medicines, was not highly prioritized when the decision was made whether or not to return. However, if health is regarded more broadly as involving more than mere physical health and the absence of illness, health did matter. Viewed as physical, social and mental well-being in line with WHO's definition of health, health was indeed one of the most important factors when the decision to return was made.

The use of mixed methods in studying a chronic illness

PubMed Central

Jason, Leonard A.; Reed, Jordan

2016-01-01

This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches. In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness. Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations. PMID:27088060

Disability Risks of Chronic Illnesses and Impairments. Disability Statistics Report 2.

ERIC Educational Resources Information Center

LaPlante, Mitchell P.

This report provides results from an investigation of comparative disability risks of specific chronic physical and mental illnesses, diseases, and impairments. National estimates are presented of the risks of chronic health conditions causing disability--including activity limitation, work disability, and need for assistance in basic life…

Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study

PubMed Central

Jowsey, Tanisha; Jeon, Yun-Hee; Dugdale, Paul; Glasgow, Nicholas J; Kljakovic, Marjan; Usherwood, Tim

2009-01-01

Background In response to the escalating burden of chronic illness in Australia, recent health policies have emphasised the promotion of patient self-management and better preventive care. A notable omission from these policies is the acknowledgment that patients with chronic illness tend to have co-morbid conditions. Our objectives were: to identify the common challenges co-morbidity poses to patients and carers in their experiences of self-management; to detail the views and perceptions of health professionals about these challenges; and to discuss policy options to improve health care for people with co-morbid chronic illness. The method included semi-structured interviews and focus groups with 129 purposively sampled participants. Participants were people with Type 2 diabetes, chronic obstructive pulmonary disease and/or chronic heart failure as well as carers and health care professionals. Content analysis of the interview data was conducted using NVivo7 software. Results Patients and their carers found co-morbidity influenced their capacity to manage chronic illness in three ways. First, co-morbidity created barriers to patients acting on risk factors; second, it complicated the process of recognising the early symptoms of deterioration of each condition, and third, it complicated their capacity to manage medication. Conclusion Findings highlight challenges that patients with multiple chronic conditions face in relation to preventive care and self-management. Future clinical policy initiatives need to move away from single illness orientation toward strategies that meet the needs of people with co-morbid conditions and strengthen their capacity to self-manage. These patients will benefit directly from specialised education and services that cater to the needs of people with clusters of co-morbidities. PMID:19735576

Building on transformative learning and response shift theory to investigate health-related quality of life changes over time in individuals with chronic health conditions and disability.

PubMed

Barclay-Goddard, Ruth; King, Judy; Dubouloz, Claire-Jehanne; Schwartz, Carolyn E

2012-02-01

A major goal of treatment for people living with chronic illness or disability is self-management leading to optimized health-related quality of life. This change process has been described in the adult education literature as transformative learning, while in health-related quality of life research, response shift has emerged as a key concept. Response shift and transformative learning literature were reviewed, and the theoretical frameworks of the 2 concepts were compared and contrasted. Response shift is described as a change in internal standards, values, or definition of a construct (eg, health-related quality of life) over time, commonly seen in individuals with chronic illness. In the context of chronic illness, transformative learning is described as a complex process of personal change including beliefs, feelings, knowledge, and values. Transformative learning is often triggered by the diagnosis of a chronic illness. This results in a critical reflection of taken-for-granted assumptions and leads to new ways of thinking, influencing personal changes in daily living. Comparing the models of response shift and transformative learning in chronic illness, the catalyst in response shift appears comparable with the trigger in transformational learning; mechanisms to process of changing; and perceived quality of life to outcomes. Both transformative learning and response shift have much to offer health care providers in understanding the learning process for the person living with chronic illness or disability to optimize their quality of life. Suggestions for future research in response shift and transformative learning in individuals with chronic health conditions and disability are proposed. Copyright © 2012 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Depression and anxiety in patients on chronic hemodialysis in University Clinical Hospital Mostar.

PubMed

Klarić, Miro; Letica, Ivona; Petrov, Bozo; Tomić, Monika; Klarić, Branka; Letica, Ludvig; Francisković, Tanja

2009-12-01

Depression and anxiety are prevailing mental problem in patients on chronic hemodialysis and they have great influence on outcome of illness. Additionally, these disorders are rarely identified in that population of patients and they are insufficiently treated. The aim of this study was to assess the prevalence of depression and anxiety in patients on chronic hemodialysis in University Clinical Hospital Mostar and to examine the correlation between the demographic variables and the time spent on dialysis with depression and anxiety levels. The experimental group consisted of 56 patients on chronic hemodialysis in Mostar Clinical Hospital. The control group 1 consisted of 53 patients diagnosed with a chronic illness and treated for at least a year, while the control group 2 consisted of 51 persons who were not diagnosed with any chronic somatic or mental illness. Demographic data were collected using the constructed questionnaire. The Beck Depression Inventory-BDI was used to determine depression, while the Spielberger State-Trait Anxiety Inventory-STAI was used to determine anxiety. We recorded significantly higher prevalence of depression in patients on chronic dialysis (51.8%) than in patients with a chronic illness (41.5%) and persons without chronic illnesses (9.8%; p < 0.001). Trait anxiety level was significantly higher in hemodialysed patients compared to the other two groups (p = 0.006) but there were no significant differences in state anxiety level. The study has not shown any significant difference in the prevalence of depression and anxiety level regarding the differences in sex, gender and education level, apart from a higher level of state anxiety in patients with a lower education level (p = 0.032). These results indicate that patients on hemodialysis have a significantly higher level of depression and a higher level of trait anxiety compared to patients with chronic illnesses and especially compared to general population.

Multiple Chronic Condition Combinations and Depression in Community-Dwelling Older Adults.

PubMed

Pruchno, Rachel A; Wilson-Genderson, Maureen; Heid, Allison R

2016-07-01

The U.S. Department of Health and Human Services recently called for a paradigm shift from the study of individual chronic conditions to multiple chronic conditions (MCCs). We identify the most common combinations of chronic diseases experienced by a sample of community-dwelling older people and assess whether depression is differentially associated with combinations of illnesses. Self-reports of diagnosed chronic conditions and depressive symptoms were provided by 5,688 people participating in the ORANJ BOWL(SM) research panel. Each respondent was categorized as belonging to one of 32 groups. ANOVA examined the association between depressive symptoms and combinations of illnesses. People with more health conditions experienced higher levels of depression than people with fewer health conditions. People with some illness combinations had higher levels of depressive symptoms than people with other illness combinations. Findings confirm extensive variability in the combinations of illnesses experienced by older adults and demonstrate the complex associations of specific illness combinations with depressive symptoms. Results highlight the need to expand our conceptualization of research and treatment around MCCs and call for a person-centered approach that addresses the unique needs of individuals with MCCs. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

42 CFR 431.51 - Free choice of providers.

Code of Federal Regulations, 2010 CFR

2010-10-01

... developmental disabilities or with chronic mental illness. This limitation may only be permitted so that the... chronic mental illness are capable of ensuring that those individuals receive needed services. (d...

Just regionalisation: rehabilitating care for people with disabilities and chronic illnesses.

PubMed

Secker, Barbara; Goldenberg, Maya J; Gibson, Barbara E; Wagner, Frank; Parke, Bob; Breslin, Jonathan; Thompson, Alison; Lear, Jonathan R; Singer, Peter A

2006-08-29

Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address this gap by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies. Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs - equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care - and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses. This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of - or revisions to - a regionalised health care strategy.

Paediatric chronic illness and educational failure: the role of emotional and behavioural problems.

PubMed

Layte, Richard; McCrory, Cathal

2013-08-01

Chronic illness in childhood is associated with worse educational outcomes. The association is usually explained via lowered cognitive development, decreased readiness to learn and school absence. However, this paper examines whether worse psychological adjustment may also play a role. We use data from the Growing Up in Ireland study, a cohort study, which collected data on 8,568 nine-year-old children through the Irish national school system using a two-stage sampling method. Maximum likelihood path analytic models are used to assess the direct effect of child chronic illness on reading and maths test scores and the mediating role of emotional and behavioural problems. In unadjusted analyses, children with a mental and behavioural condition scored 14.5 % points less on reading tests and 16.9 % points less on maths tests than their healthy peers. Children with non-mental and behavioural conditions scored 3 % points less on both tests, a significant difference. Mental and behavioural (OR, 9.58) and other chronic conditions (OR, 1.61) were significantly more likely to have 'high' levels of difficulties on the SDQ. Path analysis models showed that the association between chronic illness and educational test scores was completely mediated by emotional and behavioural problems controlling for school absence and bullying by peers. Child and adolescent chronic illness can have significant effects on educational development and a long-lasting impact on future life-chances. The psychological adjustment of the child is important in mediating the effect of chronic illness on educational outcomes. Interventions should target this developmental pathway.

Introducing the chronic disease self-management program in Switzerland and other German-speaking countries: findings of a cross-border adaptation using a multiple-methods approach.

PubMed

Haslbeck, Jörg; Zanoni, Sylvie; Hartung, Uwe; Klein, Margot; Gabriel, Edith; Eicher, Manuela; Schulz, Peter J

2015-12-28

Stanford's Chronic Disease Self-Management Program (CDSMP) stands out as having a large evidence-base and being broadly disseminated across various countries. To date, neither evidence nor practice exists of its systematic adaptation into a German-speaking context. The objective of this paper is to describe the systematic German adaptation and implementation process of the CDSMP (2010-2014), report the language-specific adaptation of Franco-Canadian CDSMP for the French-speaking part of Switzerland and report findings from the initial evaluation process. Multiple research methods were integrated to explore the perspective of workshop attendees, combining a longitudinal quantitative survey with self-report questionnaires, qualitative focus groups, and interviews. The evaluation process was conducted in for both the German and French adapted versions to gain insights into participants' experiences in the program and to evaluate its impact. Perceived self-efficacy was measured using the German version of the Self-Efficacy for Managing Chronic Disease 6-Item Scale (SES6G). Two hundred seventy eight people attending 35 workshops in Switzerland and Austria participated in the study. The study participants were receptive to the program content, peer-led approach and found principal methods useful, yet the structured approach did not address all their needs or expectations. Both short and long-term impact on self-efficacy were observed following the workshop participation (albeit with a minor decrease at 6-months). Participants reported positive impacts on aspects of coping and self-care, but limited effects on healthcare service utilization. Our findings suggest that the process for cross-border adaptation was effective, and that the CDSMP can successfully be implemented in diverse healthcare and community settings. The adapted CDSMP can be considered an asset for supporting self-management in both German-and French-speaking central European countries. It could have meaningful, wide-ranging implications for chronic illness care and primary prevention and potentially tertiary prevention of chronic disease. Further investigations are needed to tailor the program for better access to vulnerable and disadvantaged groups who might benefit the most, in terms of facilitating their health literacy in chronic illness.

Longitudinal analysis of immune abnormalities in varying severities of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients.

PubMed

Hardcastle, Sharni Lee; Brenu, Ekua Weba; Johnston, Samantha; Nguyen, Thao; Huth, Teilah; Ramos, Sandra; Staines, Donald; Marshall-Gradisnik, Sonya

2015-09-14

Research has identified immunological abnormalities in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), a heterogeneous illness with an unknown cause and absence of diagnostic test. There have been no CFS/ME studies examining innate and adaptive immune cells longitudinally in patients with varying severities. This is the first study to investigate immune cells over 6 months while also examining CFS/ME patients of varying symptom severity. Participants were grouped into 18 healthy controls, 12 moderate and 12 severe CFS/ME patients and flow cytometry was used to examine cell parameters at 0 and 6 months. Over time, iNKT CD62L expression significantly increased in moderate CFS/ME patients and CD56(bright) NK receptors differed in severe CFS/ME. Naïve CD8(+)T cells, CD8(-)CD4(-) and CD56(-)CD16(-) iNKT phenotypes, γδ2T cells and effector memory subsets were significantly increased in severe CFS/ME patients at 6 months. Severe CFS/ME patients were significantly reduced in CD56(bright)CD16(dim) NKG2D, CD56(dim)CD16(-) KIR2DL2/DL3, CD94(-)CD11a(-) γδ1T cells and CD62L(+)CD11a(-) γδ1T cells at 6 months. Severe CFS/ME patients differed from controls and moderate CFS/ME patients over time and expressed significant alterations in iNKT cell phenotypes, CD8(+)T cell markers, NK cell receptors and γδT cells at 6 months. This highlights the importance of further assessing these potential immune biomarkers longitudinally in both moderate and severe CFS/ME patients.

Parenting stress among caregivers of children with chronic illness: a systematic review.

PubMed

Cousino, Melissa K; Hazen, Rebecca A

2013-09-01

To critically review, analyze, and synthesize the literature on parenting stress among caregivers of children with asthma, cancer, cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis, and/or sickle cell disease. Method PsychInfo, MEDLINE, and Cumulative Index to Nursing and Allied Health Literature were searched according to inclusion criteria. Meta-analysis of 13 studies and qualitative analysis of 96 studies was conducted. Results Caregivers of children with chronic illness reported significantly greater general parenting stress than caregivers of healthy children (d = .40; p = ≤.0001). Qualitative analysis revealed that greater general parenting stress was associated with greater parental responsibility for treatment management and was unrelated to illness duration and severity across illness populations. Greater parenting stress was associated with poorer psychological adjustment in caregivers and children with chronic illness. Conclusion Parenting stress is an important target for future intervention. General and illness-specific measures of parenting stress should be used in future studies.

Airborne hazards exposure and respiratory health of Iraq and Afghanistan veterans.

PubMed

Falvo, Michael J; Osinubi, Omowunmi Y; Sotolongo, Anays M; Helmer, Drew A

2015-01-01

More than 2.6 million military personnel have been deployed to recent conflicts in Iraq and Afghanistan and were likely exposed to a variety of airborne hazards during deployment. Despite several epidemiologic reports of increased respiratory symptoms, whether or not these respiratory illnesses lead to reductions in lung function and/or specific pulmonary disease is unclear. We reviewed data published from 2001 to 2014 pertaining to respiratory health in military personnel deployed to Iraq and Afghanistan and found 19 unique studies. Study designs were primarily retrospective and observational in nature with patient symptom reporting and medical encounter data as primary outcome measures. Two case series reported on rare respiratory diseases, and one performed a standardized evaluation of new-onset respiratory symptoms. Respiratory outcomes in relation to proximity to a specific air pollution source (i.e., smoke from burning trash and sulfur mine fire) were described in 2 separate studies. Only 2 longitudinal investigations were identified comparing pre- and postdeployment measurement of exercise capacity. In summary, published data based on case reports and retrospective cohort studies suggest a higher prevalence of respiratory symptoms and respiratory illness consistent with airway obstruction. However, the association between chronic lung disease and airborne hazards exposure requires further longitudinal research studies with objective pulmonary assessments. Published by Oxford University Press on behalf of the Johns Hopkins Bloomberg School of Public Health 2015. This work is written by (a) US Government employee(s) and is in the public domain in the US.

Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness: A Qualitative Systematic Review.

PubMed

Kingod, Natasja; Cleal, Bryan; Wahlberg, Ayo; Husted, Gitte R

2017-01-01

This qualitative systematic review investigated how individuals with chronic illness experience online peer-to-peer support and how their experiences influence daily life with illness. Selected studies were appraised by quality criteria focused upon research questions and study design, participant selection, methods of data collection, and methods of analysis. Four themes were identified: (a) illness-associated identity work, (b) social support and connectivity, (c) experiential knowledge sharing, and (d) collective voice and mobilization. Findings indicate that online peer-to-peer communities provide a supportive space for daily self-care related to chronic illness. Online communities provided a valued space to strengthen social ties and exchange knowledge that supported offline ties and patient-doctor relationships. Individuals used online communities to exchange experiential knowledge about everyday life with illness. This type of knowledge was perceived as extending far beyond medical care. Online communities were also used to mobilize and raise collective awareness about illness-specific concerns. © The Author(s) 2016.

Management of Chronic Kidney Disease Patients in the Intensive Care Unit: Mixing Acute and Chronic Illness.

PubMed

De Rosa, Silvia; Samoni, Sara; Villa, Gianluca; Ronco, Claudio

2017-01-01

Patients with chronic kidney disease (CKD) are at high risk for developing critical illness and for admission to intensive care units (ICU). 'Critically ill CKD patients' frequently develop an acute worsening of renal function (i.e. acute-on-chronic, AoC) that contributes to long-term kidney dysfunction, potentially leading to end-stage kidney disease (ESKD). An integrated multidisciplinary effort is thus necessary to adequately manage the multi-organ damage of those kidney patients and contemporaneously reduce the progression of kidney dysfunction when they are critically ill. The aim of this review is to describe (1) the pathophysiological mechanisms underlying the development of AoC kidney dysfunction and its role in the progression toward ESKD; (2) the most common clinical presentations of critical illness among CKD/ESKD patients; and (3) the continuum of care for CKD/ESKD patients from maintenance hemodialysis/peritoneal dialysis to acute renal replacement therapy performed in ICU and, vice-versa, for AoC patients who develop ESKD. © 2017 S. Karger AG, Basel.

The role of disease management programs in the health behavior of chronically ill patients.

PubMed

Cramm, Jane Murray; Adams, Samantha A; Walters, Bethany Hipple; Tsiachristas, Apostolos; Bal, Roland; Huijsman, Robbert; Rutten-Van Mölken, Maureen P M H; Nieboer, Anna Petra

2014-04-01

Investigate the effects of disease management program (DMP) implementation on physical activity, smoking, and physical quality of life among chronically ill patients. This study used a mixed-methods approach involving qualitative (35 interviews with project managers) and quantitative (survey of patients from 18 DMPs) data collection. Questionnaire response rates were 51% (2010; 2619/5108) at T0 and 47% (2011; 2191/4693) at T1. Physical activity and the percentage of smokers improved significantly over time, whereas physical quality of life declined. After adjusting for patients' physical quality of life at T0, age, educational level, marital status, and gender, physical activity at T0 (p<0.01), changes in physical activity (p<0.001), and percentage of smokers at T0 (p<0.05) predicted physical quality of life at T1. Project managers reported that DMPs improved patient-professional interaction. The ability to set more concrete targets improved patients' health behaviors. DMPs appear to improve physical activity among chronically ill patients over time. Furthermore, (changes in) health behavior are important for the physical quality of life of chronically ill patients. Redesigning care systems and implementing DMPs based on the chronic care model may improve health behavior among chronically ill patients. Copyright © 2014 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

Biochemical correlates of neuropsychiatric illness in maple syrup urine disease

PubMed Central

Muelly, Emilie R.; Moore, Gregory J.; Bunce, Scott C.; Mack, Julie; Bigler, Don C.; Morton, D. Holmes; Strauss, Kevin A.

2013-01-01

Maple syrup urine disease (MSUD) is an inherited disorder of branched chain amino acid metabolism presenting with neonatal encephalopathy, episodic metabolic decompensation, and chronic amino acid imbalances. Dietary management enables survival and reduces risk of acute crises. Liver transplantation has emerged as an effective way to eliminate acute decompensation risk. Psychiatric illness is a reported MSUD complication, but has not been well characterized and remains poorly understood. We report the prevalence and characteristics of neuropsychiatric problems among 37 classical MSUD patients (ages 5–35 years, 26 on dietary therapy, 11 after liver transplantation) and explore their underlying mechanisms. Compared with 26 age-matched controls, MSUD patients were at higher risk for disorders of cognition, attention, and mood. Using quantitative proton magnetic resonance spectroscopy, we found lower brain glutamate, N-acetylaspartate (NAA), and creatine concentrations in MSUD patients, which correlated with specific neuropsychiatric outcomes. Asymptomatic neonatal course and stringent longitudinal biochemical control proved fundamental to optimizing long-term mental health. Neuropsychiatric morbidity and neurochemistry were similar among transplanted and nontransplanted MSUD patients. In conclusion, amino acid dysregulation results in aberrant neural networks with neurochemical deficiencies that persist after transplant and correlate with neuropsychiatric morbidities. These findings may provide insight into general mechanisms of psychiatric illness. PMID:23478409

A conceptual framework for the use of illness narratives in medical education.

PubMed

Kumagai, Arno K

2008-07-01

The use of narratives, including physicians' and patients' stories, literature, and film, is increasingly popular in medical education. There is, however, a need for an overarching conceptual framework to guide these efforts, which are often dismissed as "soft" and placed at the margins of medical school curricula. The purpose of this article is to describe the conceptual basis for an approach to patient-centered medical education and narrative medicine initiated at the University of Michigan Medical School in the fall of 2003. This approach, the Family Centered Experience, involves home visits and conversations between beginning medical students and patient volunteers and their families and is aimed at fostering humanism in medicine. The program incorporates developmental and learning theory, longitudinal interactions with individuals with chronic illness, reflective learning, and small-group discussions to explore the experience of illness and its care. The author describes a grounding of this approach in theories of empathy and moral development and clarifies the educational value that narratives bring to medical education. Specific pedagogical considerations, including use of activities to create "cognitive disequilibrium" and the concept of transformative learning, are also discussed and may be applied to narrative medicine, professionalism, multicultural education, medical ethics, and other subject areas in medical education that address individuals and their health care needs in society.

Including Young Children With "New" Chronic Illnesses in an Early Childhood Education Setting.

ERIC Educational Resources Information Center

Fauvre, Mary

1988-01-01

Presents suggestions for successfully including young children with "new" life-threatening, chronic illnesses -- various types of cancer, heart, liver, and kidney diseases -- in early childhood education classes. (BB)

76 FR 74039 - Approaches to Reducing Sodium Consumption; Establishment of Dockets; Request for Comments, Data...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-11-30

... and other chronic illnesses; sodium consumption practices; motivation and barriers in reducing sodium... role of sodium in hypertension and other chronic illnesses; sodium consumption practices; motivation...

The College Experience for Students with Chronic Illness: Implications for Academic Advising

ERIC Educational Resources Information Center

Houman, Katie M.; Stapley, Janice C.

2013-01-01

A purposive sample (2 males, 3 females) of students (aged 18-29 years) with chronic illness completed standardized measures and a semi-structured interview. Content analysis of the interview data revealed two themes: stress exacerbating symptoms of illness and a desire for a support group on campus. Viewed through the theory of emerging adulthood,…

Imaginal Coping and Childhood Illness: How Children Relate to Treatments for Chronic Illness.

ERIC Educational Resources Information Center

Clark, Cindy Dell

This ethnographic study used multiple approaches to try to determine the emotional experience of young children (ages 5 to 8) with chronic illnesses. Forty-six children with severe asthma and diabetes were interviewed on two separate occasions using child-centered in-depth interviews that included play-based interviewing. The study also employed…

Alagille Syndrome: A Case Report Highlighting Dysmorphic Facies, Chronic Illness, and Depression

PubMed Central

Winthrop, Zachary A.; Salman, Rabia; Majeed, Salman

2016-01-01

Alagille syndrome is a rare multisystem disorder affecting the liver, heart, vertebrae, eyes, and face. Alagille syndrome shares multiple phenotypic variants of other congenital or chronic childhood illnesses such as DiGeorge syndrome, Down syndrome, spina bifida, type 1 diabetes mellitus, and cystic fibrosis. All of these chronic illnesses have well-established links to psychiatric conditions. There are few community resources for Alagille patients, as it is an extremely rare condition. Despite the overlap with other chronic childhood illnesses, the psychiatric manifestations of Alagille syndrome have not been previously discussed in literature. The current study is a case report of a twelve-year-old female hospitalized in our pediatric psychiatric hospital for suicidal ideation with intent and plan. The patient had major depressive disorder, anxiety, other specified feeding and eating disorder, and attention-deficit/hyperactive disorder. PMID:28018696

Peer Attachment, Perceived Parenting Style, Self-concept, and School Adjustments in Adolescents with Chronic Illness.

PubMed

Ahn, Jeong-Ah; Lee, Sunhee

2016-12-01

The purpose of this study was to identify how peer attachment and parenting style differentially affect self-concept and school adjustment in adolescents with and without chronic illness. A cross-sectional study using multiple group analysis on the Korean panel data was used. A nationwide stratified multistage cluster sampling method was used and the survey was conducted in 2013 on 2,092 first-year middle school students in Korea. We used standardized instruments by the National Youth Policy Institute to measure peer attachment, parenting style, self-concept, and school adjustment. Multiple-group structural equation modeling was used to evaluate the difference of relations for peer attachment, parenting style, self-concept, and school adjustment variable between adolescents with chronic illness and those without chronic illness. The model fit of a multiple-group structural equation modeling was good. The difference of the path from negative parenting style to self-concept between the two groups was significant, and a significant between-group difference in the overall path was found. This indicated that self-concept in adolescents with chronic illness was more negatively affected by negative parenting style than in adolescents without chronic illness. Healthcare providers can promote the process of school adjustment in several ways, such as discussing this issue directly with adolescent patients, along with their parents and peers, examining how the organization and content of the treatment can be modified according to the adolescents' school life. Copyright © 2016. Published by Elsevier B.V.

Mind-Body Approaches and Chronic Illness: Status of Research

ERIC Educational Resources Information Center

Riccio, Cynthia A.; Pliego, Jessica; Rae, William A.

2016-01-01

An increasing number of children experience chronic health issues that affect their academic and behavioral functioning, as well as psychological well-being. At the same time, psychological stress can exacerbate the chronic illness. The first line of treatment most often is medical (e.g., pharmacology, surgery, radiation). Even when the medical…

An Evaluation of Collaborative Interventions to Improve Chronic Illness Care: Framework and Study Design

ERIC Educational Resources Information Center

Cretin, Shan; Shortell, Stephen M.; Keeler, Emmett B.

2004-01-01

The authors' dual-purpose evaluation assesses the effectiveness of formal collaboratives in stimulating organizational changes to improve chronic illness care (the chronic care model or CCM). Intervention and comparison sites are compared before and after introduction of the CCM. Multiple data sources are used to measure the degree of…

Women Confronting the Reality of Multiple Sclerosis: A Qualitative Model of Self-Healing

ERIC Educational Resources Information Center

Romagosa, Carol J.

2010-01-01

Multiple sclerosis (MS) is a chronic debilitating disease that has an uncertain course. Although uncertainty is a universal experience in chronic illness, uncertainty in MS is especially threatening to psychological well-being. Chronic illness, including conditions of disability, is one of our greatest health care problems as society ages. Never…

Structural neuroimaging across early-stage psychosis: Aberrations in neurobiological trajectories and implications for the staging model.

PubMed

Bartholomeusz, Cali F; Cropley, Vanessa L; Wannan, Cassandra; Di Biase, Maria; McGorry, Patrick D; Pantelis, Christos

2017-05-01

This review critically examines the structural neuroimaging evidence in psychotic illness, with a focus on longitudinal imaging across the first-episode psychosis and ultra-high-risk of psychosis illness stages. A thorough search of the literature involving specifically longitudinal neuroimaging in early illness stages of psychosis was conducted. The evidence supporting abnormalities in brain morphology and altered neurodevelopmental trajectories is discussed in the context of a clinical staging model. In general, grey matter (and, to a lesser extent, white matter) declines across multiple frontal, temporal (especially superior regions), insular and parietal regions during the first episode of psychosis, which has a steeper trajectory than that of age-matched healthy counterparts. Although the ultra-high-risk of psychosis literature is considerably mixed, evidence indicates that certain volumetric structural aberrations predate psychotic illness onset (e.g. prefrontal cortex thinning), while other abnormalities present in ultra-high-risk of psychosis populations are potentially non-psychosis-specific (e.g. hippocampal volume reductions). We highlight the advantages of longitudinal designs, discuss the implications such studies have on clinical staging and provide directions for future research.

Internet Searching About Disease Elicits a Positive Perception of Own Health When Severity of Illness Is High: A Longitudinal Questionnaire Study.

PubMed

Sassenberg, Kai; Greving, Hannah

2016-03-04

The Internet is one of the primary sources for health information. However, in research, the effects of Internet use on the perception of one's own health have not received much attention so far. This study tested how Internet use for acquiring health information and severity of illness influence patients with a chronic disease with regard to the perception of their own health. Negative psychological states are known to lead to preferential processing of positive information. In particular, the self-directed nature of Internet use provides room for such biases. Therefore, we predicted that patients experiencing negative health states more frequently, due to more frequent episodes of a chronic illness, will gain a more positive perception of their health if they use the Internet frequently to gain health information, but not if they use the Internet rarely. This effect was not expected for other sources of information. A longitudinal questionnaire study with two measurement points-with a 7-month time lag-tested the hypothesis in a sample of patients with chronic inflammatory bowel disease (n=208). This study assessed patients' frequency of Internet use, their participation in online social support groups, their use of other sources of health information, and several indicators of the participants' perceptions of their own health. A structure equation model (SEM) was used to test the predictions separately for Internet searches and other sources of information. Data analysis supported the prediction; the interaction between frequency of health-related information searches and frequency of episodes at the first measurement point (T1) was related to participants' positive perceptions of their own health at the second measurement point (T2) (B=.10, SE=.04, P=.02) above and beyond the perceptions of their own health at T1. When participants used the Internet relatively rarely (-1 SD), there was no relationship between frequency of episodes and positive perceptions of their own health (B=-.11, SE=.14, t203=-0.82, P=.41). In contrast, when participants used the Internet relatively often (+1 SD), the more frequently they had those episodes the more positive were the perceptions of their own health (B=.36, SE=.15, t203=2.43, P=.02). Additional SEM analyses revealed that this effect occurs exclusively when information is searched for on the Internet, but not when other sources of information are consulted, nor when online social support groups are joined. The results of this study suggest that patients might process information from the Internet selectively, in an unbalanced, biased fashion, with the formation of a self-serving (ie, positive) perception of own health. At the same time, this bias contributes to the ability of patients to cope psychologically with their disease.

Providing Support to Relatives and Friends Managing Both Chronic Physical Illness and Depression: the Views of a National Sample of U.S. Adults

PubMed Central

Janevic, Mary; Rosland, Ann-Marie; Wiitala, Wyndy; Connell, Cathleen M; Piette, John D.

2012-01-01

Objective To describe how comorbid depression in chronically ill adults affects the willingness of their family and friends to provide them with illness management support. Methods We identified a national sample of U.S. adults (n=1027), all of whom had a close relative or friend with a chronic physical illness. We examined whether respondents were less willing to help their relatives/friends with disease management when they reported that these relatives/friends were also diagnosed with depression. Results In multivariate models, the odds of respondents being willing to provide disease-management support doubled when the relative/friend was depressed (adjusted odds ratio (AOR) = 1.99; 95% C.I=1.31, 3.02). Respondents were willing to perform an equal number of illness support tasks for relatives/friends with and without depression. However, respondents reported 30% more difficulties discussing health issues (incidence rate ratio (IRR)=1.30; 95% C.I=1.11,1.53), and 44% more barriers to providing support (IRR=1.44; 95% C.I=1.18, 1.75) to depressed relatives/friends. Conclusion U.S. adults are more willing to provide disease-management support for chronically ill relatives/friends with depression. However, helping depressed relatives/friends is also more challenging. Practice implications By providing resources for potential supporters, health providers could mobilize an important source of disease-management support for patients with chronic illness and depression. PMID:22748757

Housing and Food Insecurity, Care Access, and Health Status Among the Chronically Ill: An Analysis of the Behavioral Risk Factor Surveillance System.

PubMed

Charkhchi, Paniz; Fazeli Dehkordy, Soudabeh; Carlos, Ruth C

2018-05-01

The proportion of the United States population with chronic illness continues to rise. Understanding the determinants of quality of care-particularly social determinants-is critical to the provision of care in this population. To estimate the prevalence of housing and food insecurity among persons with common chronic conditions and to assess the independent effects of chronic illness and sociodemographic characteristics on (1) housing and food insecurity, and (2) health care access hardship and health status. Cross-sectional study. We used data from the 11 states and one territory that completed the social context module of the 2015 Behavioral Risk Factor Surveillance System (BRFSS). We estimated the prevalence of housing and food insecurity among patients with cancer, stroke, cardiovascular disease, and chronic lung disease. Logistic regression models were used to assess the independent effects of housing and food insecurity, chronic conditions, and demographics on health care access and health status. Among the chronically ill, 36.71% (95% CI: 35.54-37.88) experienced housing insecurity and 30.60% (95% CI: 29.49-31.71) experienced food insecurity. Cardiovascular and lung disease increased the likelihood of housing (OR 1.69, 95% CI: 1.07-2.66 and OR 1.71, 95% CI: 1.12-2.60, respectively) and food insecurity (OR 1.75, 95% CI: 1.12-2.73 and OR 1.78, 95% CI: 1.20-2.63, respectively). Housing and food insecurity significantly increased the risk of health care access hardship. Being insured or having an income level above 200% of the federal poverty level significantly reduced the likelihood of access hardship, while female gender significantly increased the likelihood. Chronic illness independently affects housing and food insecurity. In turn, food and housing anxiety leads to reduced access to care, likely due to cost concerns, and correlates with poorer health. A more complete understanding of the pathways by which chronic illness influences social determinants and clinical outcomes is needed.

Self-management support in chronic illness care: a concept analysis.

PubMed

Kawi, Jennifer

2012-01-01

This article reports on the concept analysis of self-management support (SMS) to provide clarity for systematic implementation in practice. SMS is a concept in its early phase of development. It is increasingly evident in literature on chronic illness care. However, the definition has been simplified or vague leading to variable SMS programs and inconsistent outcomes. Elucidation of SMS is necessary in chronic illness care to facilitate clear understanding and implementation. Rodgers' evolutionary concept analysis method was used to examine SMS. Data sources included systematic multidisciplinary searches of multiple search engines. SMS refers to comprehensive sustaining approaches toward improving chronic illness outcomes consisting of patient-centered attributes (involving patients as partners; providing diverse, innovative educational modalities specific to patients' needs; individualizing patient care), provider attributes (possessing adequate knowledge, skills, attitudes in providing care), and organizational attributes (putting an organized system of care in place, having multidisciplinary team approach, using tangible and social support). A well-clarified SMS concept is important in theory development. The attributes offer necessary components in SMS programs for systematic implementation, evaluation, and research. There is great potential that SMS can help improve outcomes of chronic illness care.

Developing interventions for chronically ill patients: is coping a helpful concept?

PubMed

de Ridder, D; Schreurs, K

2001-03-01

In this review, the role of coping in the development of psychosocial interventions for chronically ill patients is discussed. After summarizing the theoretical issues involved in the translation of the coping concept into an intervention, a review is undertaken of 35 studies concerned with the impact of interventions aimed at improving coping on patients' quality of life. These studies concern seven different chronic disease types (AIDS, asthma, cancer, cardiovascular diseases, chronic pain, diabetes, and rheumatoid arthritis) and show explicit consideration of attempts to manage illness in terms of coping to be rare. Many studies nevertheless address the equivalent of coping, namely behaviors and/or cognitions intended to deal with an illness situation appraised as stressful. The results of these studies are encouraging, although largely limited to the improvement of one or two particular coping strategies and problem-focused strategies in particular. It is argued that in order to expand on these initially positive findings, greater and more explicit consideration should be given to the potential of the coping concept for intervention with the chronically ill. The appraisal of stressful situations, the use of coping resources, and the strategic application of particular coping strategies should, for example, be given more careful consideration.

Chronic stress and illness in children: the role of allostatic load.

PubMed

Johnston-Brooks, C H; Lewis, M A; Evans, G W; Whalen, C K

1998-01-01

Recent studies of stress have highlighted the contributions of chronic psychological and environmental stressors to health and well-being. Children may be especially vulnerable to the negative effects of chronic stressors. Allostasis, the body's ability to adapt and adjust to environmental demands, has been proposed as an explanatory mechanism for the stress-health link, yet empirical evidence is minimal. This study tested the proposition that allostasis may be an underlying physiological mechanism linking chronic stress to poor health outcomes in school-aged children. Specifically, we examined whether allostasis would mediate or moderate the link between chronic stress and health. To test the hypothesis that allostasis contributes to the relation between chronic stress and poor health, we examined household density as a chronic environmental stressor, cardiovascular reactivity (CVR) as a marker of allostatic load, and number of school absences due to illness as the health outcome in a sample of 81 boys. Structural equation modeling indicated that the mediating model fit the data well, accounting for 17% of the variance in days ill. Results provide the first evidence that CVR may mediate the relation between household density and medical illness in children. More generally, these findings support the role of allostasis as an underlying mechanism in the link between chronic stress and health.

Impact of offending trajectories on health: disability, hospitalisation and death in middle-aged men in the Cambridge Study in Delinquent Development.

PubMed

Piquero, Alex R; Shepherd, Iona; Shepherd, Jonathan P; Farrington, David P

2011-07-01

An anti-social lifestyle has been found to be associated with a higher likelihood of injury but a lower likelihood of organic illness up to the age of 32 years. It is not known if these associations persist into the fifth decade nor whether adverse health conditions are differently distributed across distinct offending trajectories. Hypotheses were that adverse health outcomes by the age of 48 years would vary across distinct trajectories and specifically that poor health would be most pronounced amongst the highest-rate chronic offenders, even after controlling for childhood individual and environmental risk factors. Injury and illness data were collected prospectively from boys of age 8 years in the course of the longitudinal Cambridge Study in Delinquent Development. By the age of 48 years, offending trajectories differed significantly from one another on two specific health outcomes: being registered disabled and hospitalisation. High-rate chronic offenders had the highest risk for both of these outcomes. Logistic regression modelling ruled out individual or environmental childhood risk factors for offending as a likely common cause of the health problems. The findings suggest that high-rate chronic offending may in itself create the substrate for hospitalisation and registered disability. We express some caution about the limitations imposed on the research by the small size of this specific group of interest, but suggest that the findings may indicate a case for the various agencies likely to be involved with such men - health, social services and the criminal justice system - working together in a public health model to focus on improving the chances of limiting offending to adolescence within the sub-group of persons at high risk for life-course persistent offending. Copyright © 2011 John Wiley & Sons, Ltd.

Describing and analysing primary health care system support for chronic illness care in Indigenous communities in Australia's Northern Territory - use of the Chronic Care Model.

PubMed

Si, Damin; Bailie, Ross; Cunningham, Joan; Robinson, Gary; Dowden, Michelle; Stewart, Allison; Connors, Christine; Weeramanthri, Tarun

2008-05-28

Indigenous Australians experience disproportionately high prevalence of, and morbidity and mortality from chronic illness such as diabetes, renal disease and cardiovascular disease. Improving the understanding of how Indigenous primary care systems are organised to deliver chronic illness care will inform efforts to improve the quality of care for Indigenous people. This cross-sectional study was conducted in 12 Indigenous communities in Australia's Northern Territory. Using the Chronic Care Model as a framework, we carried out a mail-out survey to collect information on material, financial and human resources relating to chronic illness care in participating health centres. Follow up face-to-face interviews with health centre staff were conducted to identify successes and difficulties in the systems in relation to providing chronic illness care to community members. Participating health centres had distinct areas of strength and weakness in each component of systems: 1) organisational influence - strengthened by inclusion of chronic illness goals in business plans, appointment of designated chronic disease coordinators and introduction of external clinical audits, but weakened by lack of training in disease prevention and health promotion and limited access to Medicare funding; 2) community linkages - facilitated by working together with community organisations (e.g. local stores) and running community-based programs (e.g. "health week"), but detracted by a shortage of staff especially of Aboriginal health workers working in the community; 3) self management - promoted through patient education and goal setting with clients, but impeded by limited focus on family and community-based activities due to understaffing; 4) decision support - facilitated by distribution of clinical guidelines and their integration with daily care, but limited by inadequate access to and support from specialists; 5) delivery system design - strengthened by provision of transport for clients to health centres, separate men's and women's clinic rooms, specific roles of primary care team members in relation to chronic illness care, effective teamwork, and functional pathology and pharmacy systems, but weakened by staff shortage (particularly doctors and Aboriginal health workers) and high staff turnover; and 6) clinical information systems - facilitated by wide adoption of computerised information systems, but weakened by the systems' complexity and lack of IT maintenance and upgrade support. Using concrete examples, this study translates the concept of the Chronic Care Model (and associated systems view) into practical application in Australian Indigenous primary care settings. This approach proved to be useful in understanding the quality of primary care systems for prevention and management of chronic illness. Further refinement of the systems should focus on both increasing human and financial resources and improving management practice.

Effectiveness of neurofeedback therapy for anxiety and stress in adults living with a chronic illness: a systematic review protocol.

PubMed

Blaskovits, Farriss; Tyerman, Jane; Luctkar-Flude, Marian

2017-07-01

The objective of this review is to systematically examine the effectiveness of neurofeedback therapy for managing anxiety and stress in adults living with a chronic illness.The specific objectives are to identify which neurofeedback systems and/or protocols demonstrate effectiveness and determine the level of supporting evidence.The review question is as follows: What is the effectiveness of neurofeedback therapy for managing anxiety and stress in an adult population aged 18 years of age or older living with a chronic illness?

Chronic Illness Associated with Mold and Mycotoxins: Is Naso-Sinus Fungal Biofilm the Culprit?

PubMed Central

Brewer, Joseph H.; Thrasher, Jack D.; Hooper, Dennis

2013-01-01

It has recently been demonstrated that patients who develop chronic illness after prior exposure to water damaged buildings (WDB) and mold have the presence of mycotoxins, which can be detected in the urine. We hypothesized that the mold may be harbored internally and continue to release and/or produce mycotoxins which contribute to ongoing chronic illness. The sinuses are the most likely candidate as a site for the internal mold and mycotoxin production. In this paper, we review the literature supporting this concept. PMID:24368325

Chronic illness associated with mold and mycotoxins: is naso-sinus fungal biofilm the culprit?

PubMed

Brewer, Joseph H; Thrasher, Jack D; Hooper, Dennis

2013-12-24

It has recently been demonstrated that patients who develop chronic illness after prior exposure to water damaged buildings (WDB) and mold have the presence of mycotoxins, which can be detected in the urine. We hypothesized that the mold may be harbored internally and continue to release and/or produce mycotoxins which contribute to ongoing chronic illness. The sinuses are the most likely candidate as a site for the internal mold and mycotoxin production. In this paper, we review the literature supporting this concept.

Florence Nightingale: her Crimean fever and chronic illness.

PubMed

Dossey, Barbara M

2010-03-01

Florence Nightingale's Crimean fever and chronic illness have intrigued historians for more than a century and a half. The purpose of this article is threefold: (a) to discuss the facts that point to the cause of Nightingale's Crimean fever as brucellosis, (b) to show that her debilitating illness for 32 years (1855-1887) was compatible with the specific form of chronic brucellosis, and (c) to present new evidence that she was still having severe symptoms in December 1887, when it was previously felt that she had no severe symptoms after 1870.

Close relationships and the management of chronic illness: Associations and interventions.

PubMed

Martire, Lynn M; Helgeson, Vicki S

2017-09-01

Self-management of a chronic illness involves not only monitoring symptoms, adhering to medication regimens, and keeping medical appointments but also making and maintaining difficult lifestyle changes. This article highlights correlational and intervention research suggesting family members are influential in children's and adults' illness management. The argument is made that a dyadic approach to chronic illness management that targets the influence of close relationships may yield more sustainable effects on patient behavior than has been achieved in the past. In particular, dyadic approaches aimed at helping patients and family members to find ways to collaborate in goal setting for these behaviors is recommended. Such dyadic interventions may also benefit family members who are ill or are at risk because of poor health behaviors. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Say 'trouble's gone': chronic illness and employability in job training programmes.

PubMed

Tsui, Emma K

2013-01-01

The concept of biographical disruption has unique relevance for socioeconomically disadvantaged groups who participate in entry-level job training programmes. In these programmes trainees often suffer from various forms of chronic illness and must arrange these illnesses into a picture of employability. In this article I use ethnographic data and narrative analysis to examine closely two trainees' illness-related experiences, expressions and talk, and find that their ability to present their illnesses in ways that are consistent with programmatic goals is strongly influenced by family support, responsibilities and roles, as well as particular aspects of illness, like the interpretability of symptoms. I also find that the concept of biographical disruption has a curious traction in the world of job training, particularly among job training programme staff who would like to see trainees mobilise a variety of resources to help manage their illness. However, for trainees, many of whom have lived with chronic illness for years, the concept of biographical disruption may be more limited as a tool for understanding the experiences of illness. A more meaningful disruptive force in the lives of trainees appears to be the programme itself and the strategies for dealing with illness that programme staff may extend. © 2012 The Author. Sociology of Health & Illness © 2012 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd.

Advance directives lessen the decisional burden of surrogate decision-making for the chronically critically ill.

PubMed

Hickman, Ronald L; Pinto, Melissa D

2014-03-01

To identify the relationships between advance directive status, demographic characteristics and decisional burden (role stress and depressive symptoms) of surrogate decision-makers (SDMs) of patients with chronic critical illness. Although the prevalence of advance directives among Americans has increased, SDMs are ultimately responsible for complex medical decisions of the chronically critically ill patient. Decisional burden has lasting psychological effects on SDMs. There is insufficient evidence on the influence of advance directives on the decisional burden of surrogate decision-makers of patients with chronic critical illness. The study was a secondary data analysis of cross-sectional data. Data were obtained from 489 surrogate decision-makers of chronically critically ill patients at two academic medical centres in Northeast Ohio, United States, between September 2005-May 2008. Data were collected using demographic forms and questionnaires. A single-item measure of role stress and the Center for Epidemiological Studies Depression (CESD) scale were used to capture the SDM's decisional burden. Descriptive statistics, t-tests, chi-square and path analyses were performed. Surrogate decision-makers who were nonwhite, with low socioeconomic status and low education level were less likely to have advance directive documentation for their chronically critically ill patient. The presence of an advance directive mitigates the decisional burden by directly reducing the SDM's role stress and indirectly lessening the severity of depressive symptoms. Most SDMs of chronically critically ill patients will not have the benefit of knowing the patient's preferences for life-sustaining therapies and consequently be at risk of increased decisional burden. Study results are clinically useful for patient education on the influence of advance directives. Patients may be informed that SDMs without advance directives are at risk of increased decisional burden and will require decisional support to facilitate patient-centred decision-making. © 2013 John Wiley & Sons Ltd.

Household illness, poverty and physical and emotional child abuse victimisation: findings from South Africa's first prospective cohort study.

PubMed

Meinck, Franziska; Cluver, Lucie D; Boyes, Mark E

2015-05-01

Physical and emotional abuse of children is a large scale problem in South Africa, with severe negative outcomes for survivors. Although chronic household illness has shown to be a predictor for physical and emotional abuse, no research has thus far investigated the different pathways from household chronic illness to child abuse victimisation in South Africa. Confidential self-report questionnaires using internationally utilised measures were completed by children aged 10-17 (n = 3515, 56.7% female) using door-to-door sampling in randomly selected areas in rural and urban locations of South Africa. Follow-up surveys were conducted a year later (96.7% retention rate). Using multiple mediation analyses, this study investigated direct and indirect effects of chronic household illness (AIDS or other illness) on frequent (monthly) physical and emotional abuse victimisation with poverty and extent of the ill person's disability as hypothesised mediators. For children in AIDS-ill families, a positive direct effect on physical abuse was obtained. In addition, positive indirect effects through poverty and disability were established. For boys, a positive direct and indirect effect of AIDS-illness on emotional abuse through poverty were detected. For girls, a positive indirect effect through poverty was observed. For children in households with other chronic illness, a negative indirect effect on physical abuse was obtained. In addition, a negative indirect effect through poverty and positive indirect effect through disability was established. For boys, positive and negative indirect effects through poverty and disability were found respectively. For girls, a negative indirect effect through poverty was observed. These results indicate that children in families affected by AIDS-illness are at higher risk of child abuse victimisation, and this risk is mediated by higher levels of poverty and disability. Children affected by other chronic illness are at lower risk for abuse victimisation unless they are subject to higher levels of household disability. Interventions aiming to reduce poverty and increase family support may help prevent child abuse in families experiencing illness in South Africa.

Double jeopardy: assessing the association between internal displacement, housing quality and chronic illness in a low-income neighborhood.

PubMed

Habib, Rima R; Yassin, Nasser; Ghanawi, Joly; Haddad, Pascale; Mahfoud, Ziyad

2011-04-01

PURPOSE: This study analyzed associations between war-related internal displacement, housing quality and the prevalence of chronic illness in Nabaa, a low-income neighborhood on the outskirts of Beirut, Lebanon. METHODS: A cross-sectional survey of sociodemographics, household characteristics and health conditions of the study population was carried out in 2002. Using a structured questionnaire, the research team surveyed 1,151 households representing 4,987 residents of all ages. The survey was administered to a proxy respondent from each household in face-to-face interviews. A multiple logistic regression model using the generalized estimation equation method was constructed to assess the simultaneous effect of displacement and housing quality on reported ill health, while adjusting for potential confounders. RESULTS: Housing quality and internal displacement were strongly associated with occurrences of chronic illness. The most vulnerable respondents were older residents, females and internally displaced people, who reported high rates of chronic illnesses. Residents with high levels of education were less likely to report a chronic illness than those that had elementary education or less. CONCLUSION: Nabaa residents' experience of poor health was associated with inadequate housing quality. Moreover, residents who have been displaced experience worse living conditions and were more likely to experience poor health than those who were not displaced. These results reveal a need for policies to improve housing quality and alleviate war-related consequences in low-income neighborhoods.

Patient activation in primary healthcare: a comparison between healthier individuals and those with a chronic illness.

PubMed

Wong, Sabrina T; Peterson, Sandra; Black, Charlyn

2011-05-01

Current policy directions place increasing expectations on patients to actively engage in their care, especially in chronic disease management. We examined relationships between patient activation and multiple dimensions of primary healthcare (PHC), including access, utilization, responsiveness, interpersonal communication, and satisfaction for patients with and without chronic illness. Cross-sectional, random digit dial survey conducted in British Columbia (BC), Canada. Stratified sample of adults (n=504), aged 19 to 90 years, who had visited their regular provider within the past 24 months. All data were weighted to represent residents living in BC. Patient activation and PHC experiences include accessibility, continuity, whole-person care, interpersonal communication, responsiveness, chronic disease management, and satisfaction. The multivariate models provide evidence that both quantity of time and quality of interactions with one's regular provider are associated with higher patient activation. Those with no chronic illness had higher activation scores when they spent more time talking with their regular provider, experienced less hurried communication, or if their test results were explained. The more time people with chronic illness are able to spend with their physician, the more activated they were. Chronic illness respondents also had higher activation scores if they reported higher whole-person care or if they were more satisfied. Positive interactions between the patient and the provider can influence the patient's abilities to engage in and be confident in maintaining/improving his/her health. Supporting patients in becoming actively engaged, in ways that work for them, is essential to providing high quality care, especially among those with a chronic condition.

College Freshmen with Chronic Illness: A Comparison with Healthy First-Year Students

ERIC Educational Resources Information Center

Herts, Kate L.; Wallis, Elizabeth; Maslow, Gary

2014-01-01

Over the past four decades, advances in medicine have decreased the mortality rates of many previously fatal chronic diseases. Children who would have died early in life are now living well into adulthood, and many are matriculating as college students. Data regarding the prevalence of chronic illness among college students, the college experience…

Differential Outcomes of Adolescents with Chronically Ill and Healthy Parents

ERIC Educational Resources Information Center

Sieh, Dominik Sebastian; Visser-Meily, Johanna Maria Augusta; Meijer, Anne Marie

2013-01-01

Approximately 10% of children grow up with a parent who has been diagnosed with a chronic medical condition (CMC) and seem to be at risk for adjustment difficulties. We examined differences in behavioral, psychosocial and academic outcomes between 161 adolescents from 101 families with a chronically ill parent and 112 adolescents from 68 families…

Critical care use during the course of serious illness.

PubMed

Iwashyna, Theodore J

2004-11-01

Despite its expense and importance, it is unknown how common critical care use is. We describe longitudinal patterns of critical care use among a nationally representative cohort of elderly patients monitored from the onset of common serious illnesses. A retrospective population-based cohort study of elderly patients in fee-for-service Medicare is used, with 1,108,060 Medicare beneficiaries at least 68 years of age and newly diagnosed with serious illnesses: 1 of 9 malignancies, stroke, congestive heart failure, hip fracture, or myocardial infarction. Medicare inpatient hospital claims from diagnosis until death (65.1%) or fixed-right censoring (more than 4 years) were reviewed. Distinct hospitalizations involving critical care use (intensive care unit or critical care unit) were counted and associated reimbursements were assessed; repeated use was defined as five or more such hospitalizations. Of the cohort, 54.9% used critical care at some time after diagnosis. Older patients were much less likely to ever use critical care (odds ratio, 0.31; comparing patients more than 90 years old with those 68-70 years old), even after adjustment. A total of 31,348 patients (2.8%) were repeated users of critical care; they accounted for 3.6 billion dollars in hospital charges and 1.4 billion dollars in Medicare reimbursement. We conclude that critical care use is common in serious chronic illness and is not associated solely with preterminal hospitalizations. Use is uneven, and a minority of patients who repeatedly use critical care account for disproportionate costs.

Longitudinal assessment of psychopathological domains over late-stage schizophrenia in relation to duration of initially untreated psychosis: 3-year prospective study in a long-term inpatient population.

PubMed

Meagher, David J; Quinn, John F; Bourke, Stephanie; Linehan, Sally; Murphy, Patrice; Kinsella, Anthony; Mullaney, James; Waddington, John L

2004-05-30

There remains uncertainty regarding any progressive nature of psychopathology and cognitive dysfunction in late-stage schizophrenia, and whether duration of initially untreated psychosis (DUP) might be associated with such 'progression'. This study examines longitudinally, over 3 years, the psychopathology and neuropsychology in 82 inpatients with DSM-IV schizophrenia, many of whom were admitted in the pre-neuroleptic era. Increase in executive dysfunction exceeded that in general cognitive impairment. Positive but not negative symptom severity decreased modestly; the primary predictor of negative symptom severity was DUP. On index assessment, psychopathology evidenced a three-factor structure; at follow-up, psychomotor poverty evidenced greater prominence and cohesion, and was on both occasions predicted primarily by DUP, while reality distortion was altered and disorganisation disassembled into alternative elements. It would appear that as years of chronic, refractory illness accrue, psychomotor poverty becomes more sharply delineated and dominant within the overall structure of psychopathology, and its prominence is predicted enduringly by DUP. Copyright 2004 Elsevier Ireland Ltd.

Defining the neurotoxin derived illness chronic ciguatera using markers of chronic systemic inflammatory disturbances: a case/control study.

PubMed

Shoemaker, Ritchie C; House, Dennis; Ryan, James C

2010-01-01

Ciguatoxins are extremely potent neurotoxins, produced by tropical marine dinoflagellates, that persistently enter into our food web. Over 100,000 people annually experience acute ciguatera poisoning from consuming toxic fish. Roughly 5% of these victims will develop chronic ciguatera (CC), a widespread, multisymptom, multisystem, chronic illness that can last tens of years. CC is marked by disproportionate disability and non-specific refractory symptoms such as fatigue, cognitive deficits and pain, and is suggestive of other illnesses. Its unknown pathophysiology makes both diagnosis and treatment difficult. We wanted to compare objective parameters of visual contrast sensitivity testing, measures of innate immune response and genetic markers in cases to controls to assess the potential for the presence of persistent inflammatory parameters that are demonstrated in other biotoxin associated illnesses at a single specialty clinic. Using 59 CC cases and 59 controls we present in retrospective review, in all cases, abnormalities in immune responses paralleling the chronic systemic inflammatory response syndrome seen in several other chronic diseases. This study defines a preliminary case definition using medical history, total symptoms, visual contrast sensitivity, HLA DR genotype analysis, reduction of regulatory neuropeptides VIP and MSH, and multiple measures of inflammatory immune response, especially C4a and TGFβ1, thereby providing a basis for identification and targeted therapy. CC provides a model for chronic human illness associated with initiation of inflammatory responses by biologically produced neurotoxins. Copyright © 2010 Elsevier Inc. All rights reserved.

The Course and Outcome of Psychiatric Illness in People with Prader-Willi Syndrome: Implications for Management and Treatment

ERIC Educational Resources Information Center

Soni, S.; Whittington, J.; Holland, A. J.; Webb, T.; Maina, E.; Boer, H.; Clarke, D.

2007-01-01

Background: This study is part of a larger UK-wide study investigating psychiatric illness in people with Prader-Willi syndrome (PWS), and describes the longitudinal aspect of psychiatric illness, in particular psychotic illness, and examines the use and role of psychotropic medication. Method: A total of 119 individuals with genetically confirmed…

Canada's Compassionate Care Benefit: views of family caregivers in chronic illness.

PubMed

Williams, Allison; Crooks, Valorie A; Stajduhar, Kelli I; Allan, Diane; Cohen, S Robin

2006-09-01

Based on a pilot evaluation of Canada's recently introduced Compassionate Care Benefit (CCB), the purpose of this paper is to highlight the experiences of family caregivers caring for people with non-malignant advanced chronic illness. Using Patton's (1997) utilization-focused evaluation approach, 25 telephone interviews were conducted with three groups of family caregivers: those who had successfully applied for the CCB; those who were unsuccessful in their applications; those who had never applied for the benefit. The CCB has a number of limitations, particularly for caregivers of patients diagnosed with non-malignant advanced chronic illness. The central limitations are: difficulties associated with accurate prognostication; limited definition of "family member"; insufficient length of the funding period. By modelling similar programmes internationally, such as those in Sweden, Norway, and the Netherlands, Canada would likely find the CCB to have greater relevance and accessibility to Canadian caregivers, particularly those caring for people with non-malignant advanced chronic illness.

Child Attitude Toward Illness Scale (CATIS): A systematic review of the literature.

PubMed

Ramsey, Rachelle R; Ryan, Jamie L; Fedele, David A; Mullins, Larry L; Chaney, John M; Wagner, Janelle L

2016-06-01

The objective of this study was to systematically review the literature utilizing the Child Attitude Toward Illness Scale (CATIS) as a measure of illness attitudes within pediatric chronic illness, including epilepsy, and provide recommendations for its use. This review includes an examination of the psychometric properties of the CATIS and the relationship between the CATIS and psychological, academic, behavioral, and illness variables. Electronic searches were conducted using Medline and PsychINFO to identify twenty-two relevant publications. The CATIS was identified as a reliable and valid self-report assessment tool across chronic illnesses, including pediatric epilepsy. Although originally developed for children ages 8-12, the CATIS has demonstrated reliability and validity in youth ages 8-22. The CATIS scores were reliably associated with cognitive appraisal variables and internalizing symptoms. Initial support exists for the relation between illness attitudes and externalizing behavior, academic functioning, and psychosocial care needs. Mixed findings were reported with regard to the relation between illness attitudes and demographic and disease variables, as well as both social and family functioning. The CATIS is a psychometrically sound self-report instrument for measuring illness attitudes and demonstrates clinical utility for examining adjustment outcomes across chronic illnesses, particularly pediatric epilepsy. Copyright © 2016 Elsevier Inc. All rights reserved.

Applying a coping with stress questionnaire for cancer patients to patients with non-cancer chronic illnesses.

PubMed

Orive, Miren; Quintana, Jose M; Vrotsou, Kalliopi; Las Hayas, Carlota; Bilbao, Amaia; Barrio, Irantzu; Matellanes, Begoña; Padierna, Jesús A

2013-06-01

One of the few instruments to evaluate coping skills among patients with chronic illnesses is the Cuestionario de Afrontamiento al Estrés para Pacientes Oncológicos (CAEPO), created initially for cancer patients. We evaluate how well CAEPO applies to patients with non-cancer chronic illnesses. A total of 344 patients (115 with chronic hepatitis C, 120 with inflammatory bowel disease and 109 with recurrent vertigo) completed the CAEPO. Exploratory factor analysis and Cronbach's alpha provide only partial support for the seven factors suggested by the original CAEPO. A streamlined version with fewer dimensions and items may be a better solution for identifying coping strategies among these patients.

Views on a brief mindfulness intervention among patients with long-term illness.

PubMed

Howarth, Ana; Perkins-Porras, Linda; Copland, Claire; Ussher, Michael

2016-11-15

Chronic illness is the leading cause of death in the UK and worldwide. Psychological therapies to support self-management have been shown to play an important role in helping those with chronic illness cope; more recently, the therapeutic benefits of mindfulness approaches have become evident for managing depression and other distressing emotions. Brief guided mindfulness interventions, are more convenient than intensive traditional programmes requiring regular attendance but have been less explored. This study assessed views on a brief (i.e., 10 min) mindfulness intervention for those with specific long-term illnesses. Semi-structured interviews and focus groups were conducted with chronic illness patient groups (i.e., chronic obstructive pulmonary disease, chronic pain and cardiovascular disease), designed to capture the acceptability and feasibility of the intervention. The interviews were conducted after use of a mindfulness based audio in clinic and, one week later, after use in the patient's own environment. Interviews were recorded, transcribed and analysed using thematic analysis. In total, a combination of 18 interviews and focus groups were conducted among 14 patients. Recruitment was most successful with chronic pain patients. All patients reported benefits such as feelings of relaxation and improved coping with symptoms. While the wording and content of the audio were generally well received, it was suggested that the length could be increased, as it felt rushed, and that more guidance about the purpose of mindfulness, and when to use it, was needed. A brief mindfulness intervention was well accepted among patients with long-term illness. The intervention may benefit by being lengthened and by offering further guidance on its use.

Disease-management partnership functioning, synergy and effectiveness in delivering chronic-illness care.

PubMed

Cramm, Jane Murray; Nieboer, Anna Petra

2012-06-01

This study explored associations among disease-management partnership functioning, synergy and effectiveness in the delivery of chronic-illness care. This study had a cross-sectional design. The study sample consists of 218 professionals (out of 393) participating in 22 disease-management partnerships in various regions of the Netherlands. We assessed the relationships among partnership functioning, synergy and effectiveness in the delivery of chronic-illness care. Partnership functioning was assessed through leadership, resources, administration and efficiency. Synergy was considered the proximal outcome of partnership functioning, which, in turn, influenced the effectiveness of disease-management partnerships [measured with the Assessment of Chronic Illness Care (ACIC) survey instrument]. Overall ACIC scores ranged from 3 to 10, indicating basic/intermediate to optimal/comprehensive delivery of chronic-illness care. The results of the regression analysis demonstrate that partnership effectiveness was positively associated with leadership (β = 0.25; P≤ 0.01), and resources (β = 0.31; P≤ 0.001). No significant relationship was found between administration, efficiency and partnership effectiveness. Partnership synergy acted as a mediator for partnership functioning and was statistically significantly associated with partnership effectiveness (β = 0.25; P≤ 0.001). Disease-management partnerships seemed better able to deliver higher levels of chronic-illness care when synergy is created between partners. Synergy was more likely to emerge with boundary-spanning leaders who understood and appreciated partners' different perspectives, could bridge their diverse cultures and were comfortable sharing ideas, resources and power. In addition, the acknowledgement of and ability to use members' resources are valuable in engaging partners' involvement and achieving synergy in disease-management partnerships.

White matter microstructural changes in adolescent anorexia nervosa including an exploratory longitudinal study.

PubMed

Vogel, Katja; Timmers, Inge; Kumar, Vinod; Nickl-Jockschat, Thomas; Bastiani, Matteo; Roebroek, Alard; Herpertz-Dahlmann, Beate; Konrad, Kerstin; Goebel, Rainer; Seitz, Jochen

2016-01-01

Anorexia nervosa (AN) often begins in adolescence, however, the understanding of the underlying pathophysiology at this developmentally important age is scarce, impeding early interventions. We used diffusion tensor imaging (DTI) to investigate microstructural white matter (WM) brain changes including an experimental longitudinal follow-up. We acquired whole brain diffusion-weighted brain scans of 22 adolescent female hospitalized patients with AN at admission and nine patients longitudinally at discharge after weight rehabilitation. Patients (10-18 years) were compared to 21 typically developing controls (TD). Tract-based spatial statistics (TBSS) were applied to compare fractional anisotropy (FA) across groups and time points. Associations between average FA values of the global WM skeleton and weight as well as illness duration parameters were analyzed by multiple linear regression. We observed increased FA in bilateral frontal, parietal and temporal areas in AN patients at admission compared to TD. Higher FA of the global WM skeleton at admission was associated with faster weight loss prior to admission. Exploratory longitudinal analysis showed this FA increase to be partially normalized after weight rehabilitation. Our findings reveal a markedly different pattern of WM microstructural changes in adolescent AN compared to most previous results in adult AN. This could signify a different susceptibility and reaction to semi-starvation in the still developing brain of adolescents or a time-dependent pathomechanism differing with extend of chronicity. Higher FA at admission in adolescents with AN could point to WM fibers being packed together more closely.

Care of the Chronically Ill at Home: An Unresolved Dilemma in Health Policy for the United States

PubMed Central

Buhler-Wilkerson, Karen

2007-01-01

The problems of caring for patients with disabling illnesses who neither get well nor die are not new. Such patients have always required assistance at home from family, benevolent volunteers, or paid caregivers. Despite two centuries of experimentation, however, no agreement exists concerning the balance between the public and private resources to be allocated through state funding, private insurance, and family contributions for the daily and routine care at home for chronically ill persons of all ages. This article examines these issues and the unavoidable tensions between fiscal reality and legitimate need. It also uses historical and policy analyses to explain why home care has never become the cornerstone for caring for the chronically ill. PMID:18070332

Dimensions of Phenomenology in Exploring Patient’s Suffering in Long-Life Illnesses

PubMed Central

Al Kalaldeh, Mahmoud; Shosha, Ghada Abu; Saiah, Najah; Salameh, Omar

2017-01-01

Background: Patients’ suffering has been increasingly investigated by health-care researchers especially in the chronically ill. Suffering is viewed as a progressive negative consequence that associated with pain, impaired self-esteem, and social alienation. This qualitative evidence synthesis aimed to provide further insights into the application of phenomenology in explaining suffering among patients with chronic illnesses. Methods: Studies included in this qualitative evidence synthesis study were retrieved by searching from the following electronic databases: CINAHL, PubMed Central, and EBSCO. Findings: Phenomenology is regarded as influential to generate in-depth evidence about suffering that are grounded in chronically ill patients’ perspectives. The philosophical constructs of suffering suggested fundamental dimensions such as stress, distress, hopelessness, and depression along with pain. Evidence encompasses the entire manifestation of suffering in which all interrelated meanings are understood and referred to a unique structure. Hermeneutic phenomenology was adopted as an effective strategy to elucidate human experience leading to the discovery of the embedded meanings of life experience. Conclusion: The phenomenological approach provides nursing research with the pathway to explore patients’ suffering experiences in the chronically ill. PMID:29582010

From Controlling to Letting Go: What Are the Psychosocial Needs of Parents of Adolescents with a Chronic Illness?

ERIC Educational Resources Information Center

Akre, Christina; Suris, Joan-Carles

2014-01-01

While one of the main objectives of adolescence is to achieve autonomy, for the specific population of adolescents with a chronic illness (CI), the struggle for autonomy is accentuated by the limits implied by their illness. However, little is known concerning the way their parents manage and cope with their children's autonomy acquisition.…

Patient- and family-centered performance measures focused on actionable processes of care for persistent and chronic critical illness: protocol for a systematic review.

PubMed

Rose, Louise; Istanboulian, Laura; Allum, Laura; Burry, Lisa; Dale, Craig; Hart, Nicholas; Kydonaki, Claire; Ramsay, Pam; Pattison, Natalie; Connolly, Bronwen

2017-04-17

Approximately 5 to 10% of critically ill patients transition from acute critical illness to a state of persistent and in some cases chronic critical illness. These patients have unique and complex needs that require a change in the clinical management plan and overall goals of care to a focus on rehabilitation, symptom relief, discharge planning, and in some cases, end-of-life care. However, existing indicators and measures of care quality, and tools such as checklists, that foster implementation of best practices, may not be sufficiently inclusive in terms of actionable processes of care relevant to these patients. Therefore, the aim of this systematic review is to identify the processes of care, performance measures, quality indicators, and outcomes including reports of patient/family experience described in the current evidence base relevant to patients with persistent or chronic critical illness and their family members. Two authors will independently search from inception to November 2016: MEDLINE, Embase, CINAHL, Web of Science, the Cochrane Library, PROSPERO, the Joanna Briggs Institute and the International Clinical Trials Registry Platform. We will include all study designs except case series/reports of <10 patients describing their study population (aged 18 years and older) using terms such as persistent critical illness, chronic critical illness, and prolonged mechanical ventilation. Two authors will independently perform data extraction and complete risk of bias assessment. Our primary outcome is to determine actionable processes of care and interventions deemed relevant to patients experiencing persistent or chronic critical illness and their family members. Secondary outcomes include (1) performance measures and quality indicators considered relevant to our population of interest and (2) themes related to patient and family experience. We will use our systematic review findings, with data from patient, family member and clinician interviews, and a subsequent consensus building process to inform the development of quality metrics and tools to measure processes of care, outcomes and experience for patients experiencing persistent or chronic critical illness and their family members. PROSPERO CRD42016052715.

Illness perception in Chinese adults with epilepsy.

PubMed

Ji, Haixia; Zhang, Lei; Li, Lunlan; Gong, Guiping; Cao, Zhaolun; Zhang, Jianfeng; Zhou, Nong; Wang, Yu; Tu, Houmian; Wang, Kai

2016-12-01

Epilepsy is among the most common neurological disorders worldwide. Understanding the patient's subjective experience plays an important role in the treatment and rehabilitation of the patient. However, few studies are concerned about the illness perception of Chinese adults with epilepsy. 117 Chinese adults with epilepsy and 87 Chinese adults with chronic liver disease completed the Chinese version of the Revised Illness Perception Questionnaire (CIPQ-R). The Chinese epilepsy patients also completed the Social Support Rating Scale (SSRS) and Simplified Coping Style Questionnaire (SCSQ). A comparison about CIPQ-R score between the epilepsy group and chronic liver group was conducted using the independent sample t test. Partial correlation coefficients were calculated among the eight subscales of the CIPQ-R and its associated factors. Results for the CIPQ-R indicated that both the epilepsy patients and the chronic liver disease patients had a moderate belief in their personal control and treatment control over their disorder. Consistent with our hypothesis, patients with epilepsy and those with chronic liver disease perceived their respective disease similarly in terms of timeline and illness coherence. However, epilepsy patients had a higher negative emotional representations level than that we expected when compared to those of the patients suffering from chronic liver disease. Partial correlation analysis in Chinese epilepsy patients showed that the timeline acute/chronic dimension and emotional representations dimension were closely related to the other dimensions of illness perception. Moreover, the illness perception of the patients was significantly associated with social support, coping style, duration of epilepsy, seizure frequency, and the number of antiepileptic drugs. Chinese patients with epilepsy had limited understanding of the illness, and poor belief in personal control and treatment control. They had a negative emotional response to their illness, and feared of the effects on the patient or patient's family. Social support, coping style, duration of epilepsy, seizure frequency, and the number of antiepileptic drugs could affect the illness perception of these patients. Further studies should focus on how to improve patients' attitudes towards their disease. Copyright © 2016 Elsevier B.V. All rights reserved.

Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers

PubMed Central

2011-01-01

Background Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by occupational health professionals, line managers (LMs) and human resource managers (HRM). Little is known about the perspectives of LMs an HRM on what is needed to facilitate job retention among chronically ill employees. The aim of this qualitative study was to explore and compare the perspectives of Dutch LMs and HRM on this issue. Methods Concept mapping methodology was used to elicit and map statements (ideas) from 10 LMs and 17 HRM about what is needed to ensure continued employment for chronically ill employees. Study participants were recruited through a higher education and an occupational health services organization. Results Participants generated 35 statements. Each group (LMs and HRM) sorted these statements into six thematic clusters. LMs and HRM identified four similar clusters: LMs and HRM must be knowledgeable about the impact of chronic disease on the employee; employees must accept responsibility for work retention; work adaptations must be implemented; and clear company policy. Thematic clusters identified only by LMs were: good manager/employee cooperation and knowledge transfer within the company. Unique clusters identified by HRM were: company culture and organizational support. Conclusions There were both similarities and differences between the views of LMs and HRM on what may facilitate job retention for chronically ill employees. LMs perceived manager/employee cooperation as the most important mechanism for enabling continued employment for these employees. HRM perceived organizational policy and culture as the most important mechanism. The findings provide information about topics that occupational health researchers and planners should address in developing job retention programs for chronically ill workers. PMID:21586139

Facilitating job retention for chronically ill employees: perspectives of line managers and human resource managers.

PubMed

Haafkens, Joke A; Kopnina, Helen; Meerman, Martha G M; van Dijk, Frank J H

2011-05-17

Chronic diseases are a leading contributor to work disability and job loss in Europe. Recent EU policies aim to improve job retention among chronically ill employees. Disability and occupational health researchers argue that this requires a coordinated and pro-active approach at the workplace by occupational health professionals, line managers (LMs) and human resource managers (HRM). Little is known about the perspectives of LMs an HRM on what is needed to facilitate job retention among chronically ill employees. The aim of this qualitative study was to explore and compare the perspectives of Dutch LMs and HRM on this issue. Concept mapping methodology was used to elicit and map statements (ideas) from 10 LMs and 17 HRM about what is needed to ensure continued employment for chronically ill employees. Study participants were recruited through a higher education and an occupational health services organization. Participants generated 35 statements. Each group (LMs and HRM) sorted these statements into six thematic clusters. LMs and HRM identified four similar clusters: LMs and HRM must be knowledgeable about the impact of chronic disease on the employee; employees must accept responsibility for work retention; work adaptations must be implemented; and clear company policy. Thematic clusters identified only by LMs were: good manager/employee cooperation and knowledge transfer within the company. Unique clusters identified by HRM were: company culture and organizational support. There were both similarities and differences between the views of LMs and HRM on what may facilitate job retention for chronically ill employees. LMs perceived manager/employee cooperation as the most important mechanism for enabling continued employment for these employees. HRM perceived organizational policy and culture as the most important mechanism. The findings provide information about topics that occupational health researchers and planners should address in developing job retention programs for chronically ill workers.

[Self esteem of chronically ill children and adolescence exemplified by obesity and congenital heart defect].

PubMed

Sticker, Elisabeth; Schmidt, Claudia; Steins, Gisela

2003-01-01

Coping with a chronic illness challenges children and adolescents in addition to their normal developmental tasks. This double challenge probably endangers the development of a stable self-esteem. The present investigation explores the possibility whether these processes are different with respect to the kind of illness. Chronic illnesses such as obesity and congenital heart defects (CHD) serve as examples in comparing two samples (8-16 years): obesity (N = 54) as visible and partly controllable illness (with respect to the course of illness) vs. congenital heart disease (N = 56) as invisible and uncontrollable illness (with respect to the origin and course of illness). Self-esteem is measured by a scale (ALS) which focuses on the public areas "school" and "leisure time" and the private area "family". Children and adolescents with CHD (especially females) display an above-average positive self-esteem in all areas. Children and adolescents with obesity mainly display an average self-esteem, the females scoring above-average for the private area "family", the males scoring below-average for the public area "leisure time". Furthermore, leisure-time related self-esteem is significantly lower for obese than for CHD subjects. These specific relations implicate differential accentuations for intervention programs.

A Comparison of Guilt in Bereaved Parents Whose Children Died by Suicide, Accident, or Chronic Disease.

ERIC Educational Resources Information Center

Miles, Margaret Shandor; Demi, Alice Sterner

1992-01-01

Compared guilt experiences of parents (n=132) whose children (aged 1-36) died by suicide, accident, or chronic illness. Guilt was reported by 92 percent of suicide bereaved parents, 78 percent of accident bereaved parents, and 71 percent of chronic disease bereaved parents. Six sources of guilt (Death Causation, Illness-Related, Childrearing,…

A Photo Elicitation Study on Chronically Ill Adolescents’ Identity Constructions During Transition

PubMed Central

Hanghøj, Signe; Boisen, Kirsten A.; Schmiegelow, Kjeld; Hølge-Hazelton, Bibi

2016-01-01

Adolescence is an important phase of life with increasing independence and identity development, and a vulnerable period of life for chronically ill adolescents with a high occurrence of insufficient treatment adherence. We conducted four photo elicitation focus group interviews with 14 adolescents (12-20 years) with juvenile idiopathic arthritis to investigate identity constructions during transition. Using a discourse analysis approach, six identity types were identified distributed on normal and marginal identities, which were lived either at home (home arena) or outside home with peers (out arena). Most participants positioned themselves as normal in the out arena and as ill in the home arena. Few participants positioned themselves as ill in an out arena, and they described how peers perceived this as a marginal and skewed behavior. This study contributes to a better understanding of why it can be extremely difficult to live with a chronic illness during adolescence. PMID:28462329

Utilizing role theory to help employed parents cope with children's chronic illness.

PubMed

Major, Debra A

2003-02-01

Role theory is utilized to detail a six-step process for developing balanced coping through role negotiation. As applied in this paper, the role theory framework provides health educators with a useful tool for helping employed parents cope with a child's chronic illness. The emphasis is on partnering with parents or primary caregivers to identify, understand and manage the multiple role demands of working parents with chronically ill children. Role theory suggests ways health educators can support balanced coping by educating families about the demands of a child's illness, and helping to reduce those demands, helping to increase family resources, supporting parents and facilitating role negotiation. The ultimate goal is the development of balanced coping strategies that (1) meet the medical and emotional needs of the ill child, (2) allow parents to maintain their physical and mental health, and (3) enable parents to meet the demands of their other roles (e.g. paid employment).

Association between short sleep duration and body mass index in Australian Indigenous children.

PubMed

Deacon-Crouch, Melissa; Skinner, Isabelle; Tucci, Joseph; Skinner, Timothy

2018-01-01

Associations between short sleep duration and obesity and the relationship between obesity and chronic illness are well documented. Obese children are likely to become obese adults. To date, there is a paucity of information regarding sleep duration and quality for Indigenous Australian people. It may be that poor-quality, short sleep is contributing to the gap in health outcomes for Indigenous people compared with non-Indigenous adults and children. This study sought to investigate the possibility that poor sleep quality may be contributing to health outcomes for Indigenous children by exploring associations between sleep duration and body mass index (BMI). Participants included 1253 children aged 7-12 years in Wave 7 of the national Longitudinal Study of Indigenous Children survey. Interviewers asked primary carers about children's sleep times. BMI was derived from measurements of children made by researchers. Regardless of age, relative socio-economic disadvantage and level of remoteness, unhealthy weight was associated with less sleep duration than healthy weight for Indigenous children. The relationship between short sleep duration and BMI in Indigenous children has important implications for their future health outcomes. Both overweight conditions and short sleep are established modifiable risk factors for metabolic dysfunction and other chronic illnesses prominent in the Indigenous population. It is important to consider strategies to optimise both for Indigenous children in an attempt to help 'close the gap' in health outcomes and life expectancy between Indigenous and non-Indigenous people. © 2017 Paediatrics and Child Health Division (The Royal Australasian College of Physicians).

Adaptive Leadership Framework for Chronic Illness

PubMed Central

Anderson, Ruth A.; Bailey, Donald E.; Wu, Bei; Corazzini, Kirsten; McConnell, Eleanor S.; Thygeson, N. Marcus; Docherty, Sharron L.

2015-01-01

We propose the Adaptive Leadership Framework for Chronic Illness as a novel framework for conceptualizing, studying, and providing care. This framework is an application of the Adaptive Leadership Framework developed by Heifetz and colleagues for business. Our framework views health care as a complex adaptive system and addresses the intersection at which people with chronic illness interface with the care system. We shift focus from symptoms to symptoms and the challenges they pose for patients/families. We describe how providers and patients/families might collaborate to create shared meaning of symptoms and challenges to coproduce appropriate approaches to care. PMID:25647829

The impacts of using community health volunteers to coach medication safety behaviors among rural elders with chronic illnesses.

PubMed

Wang, Chi-Jane; Fetzer, Susan J; Yang, Yi-Ching; Wang, Jing-Jy

2013-01-01

It is a challenge for rural health professionals to promote medication safety among older adults taking multiple medications. A volunteer coaching program to promote medication safety among rural elders with chronic illnesses was designed and evaluated. A community-based interventional study randomly assigned 62 rural elders with at least two chronic illnesses to routine care plus volunteer coaching or routine care alone. The volunteer coaching group received a medication safety program, including a coach and reminders by well-trained volunteers, as well as three home visits and five telephone calls over a two-month period. All the subjects received routine medication safety instructions for their chronic illnesses. The program was evaluated using pre- and post-tests of knowledge, attitude and behaviors with regard to medication safety. Results show the volunteer coaching group improved their knowledge of medication safety, but there was no change in attitude after the two-month study period. Moreover, the group demonstrated three improved medication safety behaviors compared to the routine care group. The volunteer coaching program and instructions with pictorial aids can provide a reference for community health professionals who wish to improve the medication safety of chronically ill elders. Copyright © 2013 Mosby, Inc. All rights reserved.

Impact of chronic illness on child and family: an overview based on five surveys with implications for management.

PubMed

Satterwhite, B B

1978-01-01

For the past eight years the Rochester Child Health Group has systematically investigated chronic illness in childhood with the goal of minimizing the psychosocial sequelae of chronic illness through more optimal management. This overview examines the impact of chronic illness on 404 children and their families in five separate studies: 1) 209 children in a follow-up of all children with chronic symptoms in a previous random sampling of children; 2) 42 children with juvenile arthritis; 3) 44 nephrotic children; 4) 54 asthmatic children; 5) 55 chronically ill children living in rural areas of Western New York. Information was obtained through parental interviews, school reports, and psychological testing of the child. The percentage of parents reporting impact of the child's illness on family differed according to study population. The percentage reporting areas of impact according to severity of the illness is as follows: worry, 75--97; financial, 46--60; fatigue of parent, 31--65; change in sleep arrangements, 17--31; change in furnishings, 15--40; less social life for parents, 12--35; restrictions on travel, 13--40; parental friction, 9--20; sibling neglect, 10--20; sibling resentment, 10--25; embarrassment, 12--20; interference from relatives, 5--17. Over half the parents felt their child's future education, job chances, and social life would be affected. One third reported activity limitations. Compared to a control group of children, a significantly greater percentage of parents of the chronically ill reported teacher concern about their child's effort and behavior, and showed concern about the child having too few friends. Two of the three studies in which psychological appraisals were obtained suggested that more of the ill children than controls showed indices of maladjustment. School information from two studies showed more of the ill children than controls underachieving and being referred to a school psychologist. Work by the Rochester Child Health Group has pointed up several ways in which providers of care can more optimally assist families in order to minimize these problems: 1) identifying families at risk at the onset to find which families may require special support; 2) Assuring that family and all care providers know who is orchestrating care, and that all areas of care are being provided; 3) Assuring that where necessary, an outreach person is meeting the needs of the family and child on an intensive, sustained, caring and creative basis.

Care Coordination for the Chronically Ill: Understanding the Patient's Perspective

PubMed Central

Maeng, Daniel D; Martsolf, Grant R; Scanlon, Dennis P; Christianson, Jon B

2012-01-01

Objective To identify factors associated with perception of care coordination problems among chronically ill patients. Methods Patient-level data were obtained from a random-digit dial telephone survey of adults with chronic conditions. The survey measured respondents' self-report of care coordination problems and level of patient activation, using the Patient Activation Measure (PAM-13). Logistic regression was used to assess association between respondents' self-report of care coordination problems and a set of patient characteristics. Results Respondents in the highest activation stage had roughly 30–40 percent lower odds of reporting care coordination problems compared to those in the lowest stage (p < .01). Respondents with multiple chronic conditions were significantly more likely to report coordination problems than those with hypertension only. Respondents' race/ethnicity, employment, insurance status, income, and length of illness were not significantly associated with self-reported care coordination problems. Conclusion We conclude that patient activation and complexity of chronic illness are strongly associated with patients' self-report of care coordination problems. Developing targeted strategies to improve care coordination around these patient characteristics may be an effective way to address the issue. PMID:22985032

Loneliness and Cognitive Function in Older Adults: Findings From the Chinese Longitudinal Healthy Longevity Survey.

PubMed

Zhong, Bao-Liang; Chen, Shu-Lin; Tu, Xin; Conwell, Yeates

2017-01-01

To examine the relationship between loneliness and cognitive function and to explore the mediating role of physical health on the loneliness-cognition relationship in Chinese older adults (OAs). Data came from a nationally representative sample of 14,199 Chinese OAs (aged 65+) from 2002, 2005, 2008, and 2011 waves of the Chinese Longitudinal Healthy Longevity Survey. A latent variable cross-lagged panel model combined with mediation analysis was used to determine the relationship between loneliness and cognitive function and the mediating effect of increase in the number of chronic conditions (ΔNCCs) on the ascertained loneliness-cognition relationship. Severe loneliness at prior assessment points was significantly associated with poorer cognitive function at subsequent assessments, and vice versa. The ΔNCCs partially mediated this prospective reciprocal relationships, accounting for 2.58% of the total effect of loneliness on cognition and 4.44% of the total effect of cognition on loneliness, respectively. Loneliness may predict subsequent cognitive decline, and vice versa. This loneliness-cognition relationship is partially explained by their impact on physical health. Multidisciplinary interventions aimed at reducing loneliness and cognitive decline per se and their associated risk factors as well as improving chronic illness management would be beneficial for emotional well-being and cognitive health in OAs. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

[Social representations of illness among people with chronic kidney disease].

PubMed

Campos, Caroline Gonçalves Pustiglione; Mantovani, Maria de Fátima; Nascimento, Maria Elisa Brum do; Cassi, Cristiam Carla

2015-06-01

To describe the social representations of illness among people with chronic kidney disease undergoing haemodialysis. Descriptive, qualitative research, anchored on the social representations theory. This study was conducted in the municipality of Ponta Grossa, Paraná State, Brazil, with 23 adults with chronic kidney disease. Data were collection between February and November 2012 by means of a semi-structured interview, and analyzed using Content Analysis. The interviews led to the categories "the meaning of kidney disease": awareness of finitude, and "survival": the visible with chronic kidney disease. The representation of illness unveiled a difference and interruption in life projects, and haemodialysis meant loss of freedom, imprisonment and stigma. Family ties and the individuals´ social role are determining representations for healthcare.

Finding joy in poor health: The leisure-scapes of chronic illness.

PubMed

McQuoid, Julia

2017-06-01

Globally, increasing numbers of people face the challenge of enjoying life while living with long-term illness. Little research addresses leisure participation for people with chronic illness despite its links with mental and physical health and self-rated quality of life. I use a space-time geographical approach to explore experiences with leisure in everyday life for 26 individuals with chronic kidney disease (CKD) in Australia. I examine ways in which the spatial and temporal characteristics of illness management and symptoms shape where, when, and how participants can enjoy leisure, focusing on: 1) logistical conflicts between illness and leisure; 2) rhythmic interferences with the force of habit in skilful leisure performance; and 3) absorbing experiences of encounter with self and place through leisure. Data were collected from 2013 to 2014. Participants kept diaries over two sample days and then participated in semi-structured interviews. Findings show that the voluntary nature of leisure offered participants important benefits in coping with and managing illness over the long-term, including opportunities to experience greater sense of control, an alternative experience of one's body to the 'sick body', and knowledge creation that supports adaptation to the uncertainties of illness trajectories. The ability to engage in meaningful leisure was constrained by the shaping forces of illness symptoms and management on participants' leisure-scapes. Illness treatment regimens should therefore be adapted to better accommodate leisure participation for chronically ill patients, and leisure should be explicitly incorporated into illness management plans negotiated between patients and health practitioners. Finally, greater understanding of the transformative capacity of habit in activities of experimentation and play may have wider-reaching implications for leisure's potential applications in public health. Leisure should be taken seriously as a vehicle for enhancing wellbeing and adaptation to life with long-term illness. Copyright © 2017 Elsevier Ltd. All rights reserved.

Finding joy in poor health: The leisure-scapes of chronic illness

PubMed Central

2017-01-01

Globally, increasing numbers of people face the challenge of enjoying life while living with long-term illness. Little research addresses leisure participation for people with chronic illness despite its links with mental and physical health and self-rated quality of life. I use a space-time geographical approach to explore experiences with leisure in everyday life for 26 individuals with chronic kidney disease (CKD) in Australia. I examine ways in which the spatial and temporal characteristics of illness management and symptoms shape where, when, and how participants can enjoy leisure, focusing on: 1) logistical conflicts between illness and leisure; 2) rhythmic interferences with the force of habit in skilful leisure performance; and 3) absorbing experiences of encounter with self and place through leisure. Data were collected from 2013 to 2014. Participants kept diaries over two sample days and then participated in semi-structured interviews. Findings show that the voluntary nature of leisure offered participants important benefits in coping with and managing illness over the long-term, including opportunities to experience greater sense of control, an alternative experience of one’s body to the ‘sick body’, and knowledge creation that supports adaptation to the uncertainties of illness trajectories. The ability to engage in meaningful leisure was constrained by the shaping forces of illness symptoms and management on participants’ leisure-scapes. Illness treatment regimens should therefore be adapted to better accommodate leisure participation for chronically ill patients, and leisure should be explicitly incorporated into illness management plans negotiated between patients and health practitioners. Finally, greater understanding of the transformative capacity of habit in activities of experimentation and play may have wider-reaching implications for leisure’s potential applications in public health. Leisure should be taken seriously as a vehicle for enhancing wellbeing and adaptation to life with long-term illness. PMID:28475903

Work overload, burnout, and psychological ill-health symptoms: a three-wave mediation model of the employee health impairment process.

PubMed

de Beer, Leon T; Pienaar, Jaco; Rothmann, Sebastiaan

2016-07-01

The study reported here investigated the causal relationships in the health impairment process of employee well-being, and the mediating role of burnout in the relationship between work overload and psychological ill-health symptoms, over time. The research is deemed important due to the need for longitudinal evidence of the health impairment process of employee well-being over three waves of data. A quantitative survey design was followed. Participants constituted a longitudinal sample of 370 participants, at three time points, after attrition. Descriptive statistics and structural equation modeling methods were implemented. Work overload at time one predicted burnout at time two, and burnout at time two predicted psychological ill-health symptoms at time three. Indirect effects were found between work overload time one and psychological ill-health symptoms time three via burnout time two, and also between burnout time one and psychological ill-health symptoms time three, via burnout time two. The results provided supportive evidence for an "indirect-only" mediation effect, for burnout's causal mediation mechanism in the health impairment process between work overload and psychological ill-health symptoms.

A Longitudinal Study of the Effects of Chronic Maltreatment on Children's Behavioral and Emotional Problems

ERIC Educational Resources Information Center

Ethier, L.S.; Lemelin, J.P.; Lacharite, C.

2004-01-01

Objective: The aim of the present longitudinal study was to examine the links between chronicity of maltreatment and child behavioral and emotional problems. Method: Forty-nine maltreated children (32 victims of continuous, or chronic, maltreatment; 17 victims of transitory maltreatment) and their mothers were evaluated in their homes three times…

Prolonged grief symptoms related to loss of physical functioning: examining unique associations with medical service utilization.

PubMed

Holland, Jason M; Graves, Stacy; Klingspon, Kara L; Rozalski, Vincent

2016-01-01

Prolonged grief, a severe and chronic form of grieving most commonly studied in the context of bereavement, may have relevance to losses associated with chronic illness (e.g. grief related to loss of functioning or loss of a planned future). The purpose of the present study is to examine the unique associations between prolonged grief symptoms and service utilization patterns. An online self-report assessment battery was administered among a sample of 275 older adults with at least one chronic illness that caused significant physical impairment. Even after statistically controlling for relevant physical health (e.g. severity of physical limitations, somatic symptoms, number of chronic illnesses) and psychosocial variables (e.g. social support, depression/anxiety), more severe prolonged grief symptoms were associated with a greater number of emergency room visits, overnight stays in the hospital and total nights in the hospital. These findings highlight the importance of screening for prolonged grief symptomatology with older individuals with a debilitating chronic illness. Recent evidence suggests that prolonged grief may have relevance for losses associated with physical illness. The present study shows that prolonged grief reactions related to physical illness (e.g. grieving the loss of functioning) are uniquely associated with increased hospital-based service utilization. Given the relevance of prolonged grief reactions in this population, practitioners may wish to assess for these symptoms. Future clinical research should focus on developing interventions to target prolonged grief symptoms associated with these losses.

When work and satisfaction with life do not go hand in hand: health barriers and personal resources in the participation of people with chronic physical disabilities.

PubMed

van Campen, Cretien; Cardol, Mieke

2009-07-01

People with chronic physical disabilities participate less in both paid and voluntary work and are less satisfied with their lives than people without health problems. Governments and scientists have suggested that participation in employment is the main road to well-being. We analysed national survey data on the participation in work and satisfaction with life, comparing people with a chronic illness and a physical disability (n=603) to people with a chronic illness but without a physical disability (n=1199) and the general population (n=6128) in the Netherlands. The results show that the relationship between happiness and work is different for people with a chronic illness and a physical disability, as compared to the other two populations. Fewer people with a chronic illness and disability were categorized as 'satisfied people with work' (i.e. participating in work and satisfied with their life), while most people belonged to a group of 'satisfied people without work' and, surprisingly, not to the expected group of 'dissatisfied people without work'. In order to explain this exceptional distribution we modelled satisfied participation in work as an outcome of a balance between personal resources and barriers. By means of discriminant regression analysis, we identified the severity of motor disability as the main barrier, and education level and age, as the main resource factors that distinguish between 'satisfied people with work' and others among the group of people with a chronic illness and a physical disability.

Talking about Illness: Mothers' and Toddlers' Conversations during a Joint Book-Reading Task

ERIC Educational Resources Information Center

White, Carmel Parker; Bellamy, Roberta Woodlief; Powell, Monica Creech; Wittenauer, Ashley Rae

2011-01-01

This study examined the language used by mothers to talk about acute and chronic illness while engaged in a joint book-reading of a story where the main character had a cold. Thirty-four toddlers and their mothers participated in the study. Some of the mothers had a chronic illness, and some of the families or the children had had an acute illness…

Early Intervention in Bipolar Disorder.

PubMed

Vieta, Eduard; Salagre, Estela; Grande, Iria; Carvalho, André F; Fernandes, Brisa S; Berk, Michael; Birmaher, Boris; Tohen, Mauricio; Suppes, Trisha

2018-05-01

Bipolar disorder is a recurrent disorder that affects more than 1% of the world population and usually has its onset during youth. Its chronic course is associated with high rates of morbidity and mortality, making bipolar disorder one of the main causes of disability among young and working-age people. The implementation of early intervention strategies may help to change the outcome of the illness and avert potentially irreversible harm to patients with bipolar disorder, as early phases may be more responsive to treatment and may need less aggressive therapies. Early intervention in bipolar disorder is gaining momentum. Current evidence emerging from longitudinal studies indicates that parental early-onset bipolar disorder is the most consistent risk factor for bipolar disorder. Longitudinal studies also indicate that a full-blown manic episode is often preceded by a variety of prodromal symptoms, particularly subsyndromal manic symptoms, therefore supporting the existence of an at-risk state in bipolar disorder that could be targeted through early intervention. There are also identifiable risk factors that influence the course of bipolar disorder, some of them potentially modifiable. Valid biomarkers or diagnosis tools to help clinicians identify individuals at high risk of conversion to bipolar disorder are still lacking, although there are some promising early results. Pending more solid evidence on the best treatment strategy in early phases of bipolar disorder, physicians should carefully weigh the risks and benefits of each intervention. Further studies will provide the evidence needed to finish shaping the concept of early intervention. AJP AT 175 Remembering Our Past As We Envision Our Future April 1925: Interpretations of Manic-Depressive Phases Earl Bond and G.E. Partridge reviewed a number of patients with manic-depressive illness in search of a unifying endo-psychic conflict. They concluded that understanding either phase of illness was "elusive" and "tantalizing beyond reach." (Am J Psychiatry 1925: 81: 643-662 ).

Improved cognitive, affective and anxiety measures in patients with chronic systemic disorders following structured physical activity.

PubMed

Teixeira, Robson Bonoto; Marins, João Carlos Bouzas; de Sá Junior, Antonio Reis; de Carvalho, Cristiane Junqueira; da Silva Moura, Tiago Augusto; Lade, Carlos Gabriel; Rizvanov, Albert A; Kiyasov, Andrey P; Mukhamedyarov, Marat A; Zefirov, Andrey L; Palotás, András; Lima, Luciana Moreira

2015-11-01

Mental illnesses are frequent co-morbid conditions in chronic systemic diseases. High incidences of depression, anxiety and cognitive impairment complicate cardiovascular and metabolic disorders such as hypertension and diabetes mellitus. Lifestyle changes including regular exercise have been advocated to reduce blood pressure and improve glycaemic control. The purpose of this project was to evaluate the effect of physical training on the most prevalent corollary psychiatric problems in patients with chronic organic ailments. This longitudinal study assessed the mental health of hypertensive (age: 57 ± 8 years) and/or diabetic (age: 53 ± 8 years) patients using mini-mental state examination, Beck's depression inventory, Beck's anxiety inventory and self-reporting questionnaire-20 before and after a 3-month supervised resistance and aerobic exercise programme comprising structured physical activity three times a week. Clinically relevant improvement was observed in the Beck's depression inventory and Beck's anxiety inventory scores following the 12-week training (61%, p = 0.001, and 53%, p = 0.02, respectively). Even though statistically not significant (p = 0.398), the cognitive performance of this relatively young patient population also benefited from the programme. These results demonstrate positive effects of active lifestyle on non-psychotic mental disorders in patients with chronic systemic diseases, recommending exercise as an alternative treatment option. © The Author(s) 2015.

Chronic Illness in Adolescents: A Sociological Perspective.

ERIC Educational Resources Information Center

Silber, Tomas J.

1983-01-01

Relates chronic illness in adolescents to a sociological model of deviance. Four situations are discussed in which the issues of prognosis, responsibility, and stigma elicit societal response. The usefulness of a sociological model consists in making vague societal perceptions and rules explicit. (JAC)

24 CFR 91.5 - Definitions.

Code of Federal Regulations, 2010 CFR

2010-04-01

... chronically homeless, a person must have been sleeping in a place not meant for human habitation (e.g., living... disorder, serious mental illness, developmental disability, or chronic physical illness or disability... designed for, or ordinarily used as, a regular sleeping accommodation for human beings. Homeless...

Marital satisfaction and depression among couples following men's acute coronary syndrome: testing dyadic dynamics in a longitudinal design.

PubMed

Dekel, Rachel; Vilchinsky, Noa; Liberman, Gabriel; Leibowitz, Morton; Khaskia, Abed; Mosseri, Morris

2014-05-01

The current study examined the contribution of marital satisfaction to symptoms of depression among patients with acute coronary syndrome (ACS) and their partners. The sample comprised of 91 ACS male patients and their female partners. Data were collected at the time of initial hospitalization and 6 months later. Patients' and partners' assessments of marital satisfaction were measured using the ENRICH scale. Symptoms of depression were measured using the Brief Symptoms Inventory (BSI). Dyadic analysis applying the Actor-Partner Inter-dependence Model (APIM) was used. Different patterns emerged for the two phases. In the acute phase, only the Actor effect was significant: for both patients and partners, one's greater marital satisfaction was associated with one's lower levels of depression. In the chronic phase, both Actor and Partner effects were significant, while different trends were found for patients and partners. Partners' marital satisfaction was associated with their own and the patients' decreased depression symptoms, whereas among patients, higher levels of marital satisfaction were associated with elevated levels of depression both for themselves and for their partners. A dyadic perspective and phases of illness have to be taken into account in understanding adjustment and developing interventions following ACS. What is already known on this subject? The contribution of marital satisfaction to psychological adjustment following cardiac illness has been explored, but mainly from the perspective of one partner only. Different phases of an illness present different challenges for both patients and family members. What does this study add? A dyadic perspective on recovery from cardiac illness. The partner's contribution during the different phases of the illness. © 2013 The British Psychological Society.

Communication about chronic critical illness.

PubMed

Nelson, Judith E; Mercado, Alice F; Camhi, Sharon L; Tandon, Nidhi; Wallenstein, Sylvan; August, Gary I; Morrison, R Sean

2007-12-10

Despite poor outcomes, life-sustaining treatments including mechanical ventilation are continued for a large and growing population of patients with chronic critical illness. This may be owing in part to a lack of understanding resulting from inadequate communication between clinicians and patients and families. Our objective was to investigate the informational needs of patients with chronic critical illness and their families and the extent to which these needs are met. In this prospective observational study conducted at 5 adult intensive care units in a large, university-affiliated hospital in New York, New York, 100 patients with chronic critical illness (within 3-7 days of elective tracheotomy for prolonged mechanical ventilation) or surrogates for incapacitated patients were surveyed using an 18-item questionnaire addressing communication about chronic critical illness. Main outcome measures included ratings of importance and reports of whether information was received about questionnaire items. Among 125 consecutive, eligible patients, 100 (80%) were enrolled; questionnaire respondents included 2 patients and 98 surrogates. For all items, more than 78% of respondents rated the information as important for decision making (>98% for 16 of 18 items). Respondents reported receiving no information for a mean (SD) of 9.0 (3.3) of 18 items, with 95% of respondents reporting not receiving information for approximately one-quarter of the items. Of the subjects rating the item as important, 77 of 96 (80%) and 69 of 74 (93%) reported receiving no information about expected functional status at hospital discharge and prognosis for 1-year survival, respectively. Many patients and their families may lack important information for decision making about continuation of treatment in the chronic phase of critical illness. Strategies for effective communication in this clinical context should be investigated and implemented.

Communication About Chronic Critical Illness

PubMed Central

Nelson, Judith E.; Mercado, Alice F.; Camhi, Sharon L.; Tandon, Nidhi; Wallenstein, Sylvan; August, Gary I.; Morrison, R. Sean

2008-01-01

Background Despite poor outcomes, life-sustaining treatments including mechanical ventilation are continued for a large and growing population of patients with chronic critical illness. This may be owing in part to a lack of understanding resulting from inadequate communication between clinicians and patients and families. Our objective was to investigate the informational needs of patients with chronic critical illness and their families and the extent to which these needs are met. Methods In this prospective observational study conducted at 5 adult intensive care units in a large, university-affiliated hospital in New York, New York, 100 patients with chronic critical illness (within 3–7 days of elective tracheotomy for prolonged mechanical ventilation) or surrogates for incapacitated patients were surveyed using an 18-item questionnaire addressing communication about chronic critical illness. Main outcome measures included ratings of importance and reports of whether information was received about questionnaire items. Results Among 125 consecutive, eligible patients, 100 (80%) were enrolled; questionnaire respondents included 2 patients and 98 surrogates. For all items, more than 78% of respondents rated the information as important for decision making (>98% for 16 of 18 items). Respondents reported receiving no information for a mean (SD) of 9.0 (3.3) of 18 items, with 95% of respondents reporting not receiving information for approximately one-quarter of the items. Of the subjects rating the item as important, 77 of 96 (80%) and 69 of 74 (93%) reported receiving no information about expected functional status at hospital discharge and prognosis for 1-year survival, respectively. Conclusions Many patients and their families may lack important information for decision making about continuation of treatment in the chronic phase of critical illness. Strategies for effective communication in this clinical context should be investigated and implemented. PMID:18071175

Black-white disparities in the association between posttraumatic stress disorder and chronic illness

PubMed Central

Nobles, Carrie J.; Valentine, Sarah E.; Borba, Christina P.C.; Gerber, Monica W.; Shtasel, Derri L.; Marques, Luana

2016-01-01

Objective Non-Latino blacks experience a higher proportion of chronic illness and associated disabilities than non-Latino whites. Posttraumatic stress disorder (PTSD) is associated with a greater risk of chronic illness, although few studies have investigated whether the interaction of PTSD with racial disparities may lead to a greater risk of chronic illness among blacks with PTSD than among whites with PTSD. Methods We evaluated data from the population-based National Survey of American Life and the National Comorbidity Survey Replication to investigate the association between race, lifetime PTSD and self-reported chronic illness. Weighted linear and Poisson regression models assessed differences in the magnitude of association between PTSD and chronic illness by race on both the additive and multiplicative scales. Results The magnitude of the association between lifetime PTSD and diabetes was greater among blacks (RD 0.07, 95% CI 0.02, 0.11; RR 1.9, 95% CI 1.4, 2.5) than whites (RD 0.004, 95% CI −0.02, 0.03; RR 1.2, 95% CI 0.7, 1.9) on the additive (p=0.017) scale. The magnitude of the association between lifetime PTSD and heart disease was greater among blacks (RD 0.09, 95% CI 0.05, 0.13) than whites (RD 0.04, 95% CI 0.01, 0.07) on the additive scale at a level approaching significance (p=0.051). Conclusion A lifetime history of PTSD was associated with a significantly greater risk of diabetes among blacks as compared to whites. These findings suggest that continuous exposure to racial inequalities may be associated with a greater risk of PTSD-related health sequela. PMID:27212665

Recent developments in the care, treatment, and rehabilitation of the chronic mentally ill in Nigeria.

PubMed

Jegede, R O; Williams, A O; Sijuwola, A O

1985-06-01

Nigeria, with a population estimated at 80 million, has fewer than 100 psychiatrists and psychologists and only 20 psychiatric facilities. Most chronic mental patients are cared for by their relatives, by traditional healers, or by religious healers affiliated with the new Christian churches, which have proliferated in recent years. Lack of organized social welfare services makes the family the only consistent source of social support for the mentally ill; patients who lose contact with their families often become homeless wanderers. Although the majority of the mentally ill in Nigeria are cared for outside the mental health system, recent developments, such as the establishment of mobile clinics and village-based psychiatric units, show great potential for advancing the treatment of chronic mental illness in Nigeria.

Cognitive Biases in Children and Adolescents With Chronic Pain: A Review of Findings and a Call for Developmental Research.

PubMed

Lau, Jennifer Y F; Heathcote, Lauren C; Beale, Sarah; Gray, Suzy; Jacobs, Konrad; Wilkinson, Nick; Crombez, Geert

2018-06-01

Cognitive biases that emphasize bodily harm, injury, and illness could play a role in the maintenance of chronic pain by facilitating fear and avoidance. Whereas extensive research has established attention, interpretation, and memory biases in adults with chronic pain, far less is known about these same biases in children and adolescents with pain. Studying cognitive biases in attention, interpretation, and memory in relation to pain occurring in youth is important because youth is a time when pain can first become chronic, and when relationships between cognitive biases and pain outcomes emerge and stabilize. Thus, youth potentially offers a time window for the prevention of chronic pain problems. In this article, we summarize the growing corpus of data that have measured cognitive biases in relation to pediatric pain. We conclude that although biases in attention, interpretation, and memory characterize children and adolescents with varying pain experiences, questions regarding the direction, magnitude, nature, and role of these biases remain. We call for independent extension of cognitive bias research in children and adolescents, using well powered longitudinal studies with wide age ranges and psychometrically sound experimental measures to clarify these findings and any developmental trends in the links between cognitive biases and pain outcomes. This article provides a rationale for the theoretical and practical importance of studying the role of cognitive biases in children and adolescents with chronic pain, which has to date, been relatively understudied. Existing findings are reviewed critically, and recommendations for future research are offered. Copyright © 2018 The American Pain Society. Published by Elsevier Inc. All rights reserved.

Symptoms of chronic fatigue syndrome/myalgic encephalopathy are not determined by activity pacing when measured by the chronic pain coping inventory.

PubMed

Thompson, D P; Antcliff, D; Woby, S R

2018-03-01

Chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) is a chronic illness which can cause significant fatigue, pain and disability. Activity pacing is frequently advocated as a beneficial coping strategy, however, it is unclear whether pacing is significantly associated with symptoms in people with CFS/ME. The first aim of this study was therefore to explore the cross-sectional associations between pacing and levels of pain, disability and fatigue. The second aim was to explore whether changes in activity pacing following participation in a symptom management programme were related to changes in clinical outcomes. Cross-sectional study exploring the relationships between pacing, pain, disability and fatigue (n=114) and pre-post treatment longitudinal study of a cohort of patients participating in a symptom management programme (n=35). Out-patient physiotherapy CFS/ME service. One-hundred and fourteen adult patients with CFS/ME. Pacing was assessed using the chronic pain coping inventory. Pain was measured using a Numeric Pain Rating Scale, fatigue with the Chalder Fatigue Scale and disability with the Fibromyalgia Impact Questionnaire. No significant associations were observed between activity pacing and levels of pain, disability or fatigue. Likewise, changes in pacing were not significantly associated with changes in pain, disability or fatigue following treatment. Activity pacing does not appear to be a significant determinant of pain, fatigue or disability in people with CFS/ME when measured with the chronic pain coping index. Consequently, the utility and measurement of pacing require further investigation. Copyright © 2017 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved.

Noninvasive in vivo optical detection of biofilm in the human middle ear.

PubMed

Nguyen, Cac T; Jung, Woonggyu; Kim, Jeehyun; Chaney, Eric J; Novak, Michael; Stewart, Charles N; Boppart, Stephen A

2012-06-12

Otitis media (OM), a middle-ear infection, is the most common childhood illness treated by pediatricians. If inadequately treated, OM can result in long-term chronic problems persisting into adulthood. Children with chronic OM or recurrent OM often have conductive hearing loss and communication difficulties and require surgical treatment. Tympanostomy tube insertion, the placement of a small drainage tube in the tympanic membrane (TM), is the most common surgical procedure performed in children under general anesthesia. Recent clinical studies have shown evidence of a direct correspondence between chronic OM and the presence of a bacterial biofilm within the middle ear. Biofilms are typically very thin and cannot be recognized using a regular otoscope. Here we report the use of optical coherent ranging techniques to noninvasively assess the middle ear to detect and quantify biofilm microstructure. This study involves adults with chronic OM, which is generally accepted as a biofilm-related disease. Based on more than 18,537 optical ranging scans and 742 images from 13 clinically infected patients and 7 normal controls using clinical findings as the gold standard, all middle ears with chronic OM showed evidence of biofilms, and all normal ears did not. Information on the presence of a biofilm, along with its structure and response to antibiotic treatment, will not only provide a better fundamental understanding of biofilm formation, growth, and eradication in the middle ear, but also may provide much-needed quantifiable data to enable early detection and quantitative longitudinal treatment monitoring of middle-ear biofilms responsible for chronic OM.

Noninvasive in vivo optical detection of biofilm in the human middle ear

PubMed Central

Jung, Woonggyu; Kim, Jeehyun; Chaney, Eric J.; Novak, Michael; Stewart, Charles N.; Boppart, Stephen A.

2012-01-01

Otitis media (OM), a middle-ear infection, is the most common childhood illness treated by pediatricians. If inadequately treated, OM can result in long-term chronic problems persisting into adulthood. Children with chronic OM or recurrent OM often have conductive hearing loss and communication difficulties and require surgical treatment. Tympanostomy tube insertion, the placement of a small drainage tube in the tympanic membrane (TM), is the most common surgical procedure performed in children under general anesthesia. Recent clinical studies have shown evidence of a direct correspondence between chronic OM and the presence of a bacterial biofilm within the middle ear. Biofilms are typically very thin and cannot be recognized using a regular otoscope. Here we report the use of optical coherent ranging techniques to noninvasively assess the middle ear to detect and quantify biofilm microstructure. This study involves adults with chronic OM, which is generally accepted as a biofilm-related disease. Based on more than 18,537 optical ranging scans and 742 images from 13 clinically infected patients and 7 normal controls using clinical findings as the gold standard, all middle ears with chronic OM showed evidence of biofilms, and all normal ears did not. Information on the presence of a biofilm, along with its structure and response to antibiotic treatment, will not only provide a better fundamental understanding of biofilm formation, growth, and eradication in the middle ear, but also may provide much-needed quantifiable data to enable early detection and quantitative longitudinal treatment monitoring of middle-ear biofilms responsible for chronic OM. PMID:22645342

Longitudinal outcomes of children with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS).

PubMed

Leon, Jill; Hommer, Rebecca; Grant, Paul; Farmer, Cristan; D'Souza, Precilla; Kessler, Riley; Williams, Kyle; Leckman, James F; Swedo, Susan

2018-05-01

Little is known about the natural history of children with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS). This study prospectively followed 33 children with PANDAS for up to 4.8 years (mean 3.3 ± 0.7 years) after enrollment in a 24-week randomized, double-blind, placebo-controlled trial of intravenous immunoglobulin (IVIG) (N = 35). Fourteen of eighteen children randomized to placebo received open label IVIG 6 weeks after the blinded infusion, so follow-up results reported below largely reflect outcomes in a population of children who received at least one dose of IVIG. Telephone interviews with the parents of participants found that at the time of phone follow-up, 29 (88%) were not experiencing clinically significant obsessive-compulsive symptoms. During the interim period (6-57 months after entering the clinical trial), 24 (72%) had experienced at least one exacerbation of PANDAS symptoms, with a median of one exacerbation per child (range 1-12; interquartile range 0-3). A variety of treatment modalities, including antibiotics, IVIG, psychiatric medications, cognitive behavioral therapy, and others, were used to treat these exacerbations, and were often used in combination. The outcomes of this cohort are better than those previously reported for childhood-onset OCD, which may support conceptualization of PANDAS as a subacute illness similar to Sydenham chorea. However, some children developed a chronic course of illness, highlighting the need for research that identifies specific symptoms or biomarkers that can be used to predict the longitudinal course of symptoms in PANDAS.

A descriptive and comparative study of the prevalence of depressive and anxiety disorders in low-income adults with type 2 diabetes and other chronic illnesses.

PubMed

Thomas, Janet; Jones, Glenn; Scarinci, Isabel; Brantley, Phillip

2003-08-01

To determine whether type 2 diabetes contributes to the presence of depressive and anxiety disorder diagnoses in low-income adults with hypertension, asthma, and/or arthritis. Using a cross-sectional design, this study administered a structured diagnostic interview to low-income primary care patients diagnosed with type 2 diabetes, hypertension, arthritis, and asthma, as well as to those with no chronic illness (n = 326), to determine the 12-month prevalence of depressive and anxiety disorders. A logistic regression (LR) model was used to assess whether a diagnosis of depression and/or anxiety was associated with type 2 diabetes after adjusting for known risk factors. A high prevalence rate of depressive and/or anxiety disorders was found in the total sample (29%) and in all three illness groups: type 2 diabetes (36%), other chronic illnesses (24%), and no chronic illness (31%). Using LR, a main effect was detected for illness group when age and education were controlled (chi(2) = 22.66, df 4, P = 0.000). Specifically, the odds of occurrence of a depressive and/or anxiety disorder in those with comorbid type 2 diabetes were twice that in the nondiabetic, chronically ill comparison group (odds ratio 2.26, 95% CI 1.28-4.01, P = 0.005). These results suggest a positive contribution of type 2 diabetes to increased rates of depressive and/or anxiety disorders in patients with hypertension, asthma, and/or arthritis and support prior research that type 2 diabetes may serve as an indicator of depression and anxiety in low-income adults treated in primary care clinics.

The Constant Shadow: Reflections on the Life of the Chronically Ill Child.

ERIC Educational Resources Information Center

Massie, Robert K., Jr.

1984-01-01

This article provides insight, through the author's personal experience, into the life of the chronically ill child. Problems encountered by these children and their families due to inadequacies in the educational system, medical profession, and insurance companies are discussed. (DF)

What Knowledge and Skills Do Caregivers Need?

ERIC Educational Resources Information Center

Given, Barbara; Sherwood, Paula R.; Given, Charles W.

2008-01-01

Patients with chronic illnesses and multiple comorbid conditions have intricate treatment protocols that require caregiver involvement, further complicating this already-difficult care. Because better treatments have extended the life spans of most patients with chronic illnesses, caregiver involvement often is required for several years. Many…

20 CFR 30.220 - What are the criteria for eligibility for benefits relating to chronic silicosis?

Code of Federal Regulations, 2010 CFR

2010-04-01

...' COMPENSATION PROGRAMS, DEPARTMENT OF LABOR ENERGY EMPLOYEES OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT OF 2000 CLAIMS FOR COMPENSATION UNDER THE ENERGY EMPLOYEES OCCUPATIONAL ILLNESS COMPENSATION PROGRAM ACT... disease that arose as a consequence of the accepted chronic silicosis. ...

Leveraging electronic health records to support chronic disease management: the need for temporal data views.

PubMed

Samal, Lipika; Wright, Adam; Wong, Bang T; Linder, Jeffrey A; Bates, David W

2011-01-01

The ageing population worldwide is increasingly acquiring multiple chronic diseases. The complex management of chronic diseases could be improved with electronic health records (EHRs) tailored to chronic disease care, but most EHRs in use today do not adequately support longitudinal data management. A key aspect of chronic disease management is that it takes place over long periods, but the way that most EHRs display longitudinal data makes it difficult to trend changes over time and slows providers as they review each patient's unique course. We present five clinical scenarios illustrating longitudinal data needs in complex chronic disease management. These scenarios may function as example cases for software development. For each scenario, we describe and illustrate improvements in temporal data views. Two potential solutions are visualisation for numerical data and disease-oriented text summaries for non-numerical data. We believe that development and widespread implementation of improved temporal data views in EHRs will improve the efficiency and quality of chronic disease management in primary care.

[Development of Empowerment Program for Persons with Chronic Mental Illness and Evaluation of Impact].

PubMed

Kim, Mijung; Lee, Kyunghee

2015-12-01

This study was done to develop an empowerment program for people with chronic mental illness and to analyze effects of the program on level of empowerment. The research was conducted using a nonequivalent control group pretest-posttest design. Participants were 37 people with chronic mental illness (experimental group: 18, control group: 19). The empowerment program was provided for 8 weeks (15 sessions). Data were collected between July 21 and October 17, 2014. Data were analyzed using Chi-square, Fisher's exact test, Sapiro-Wilk test, and Repeated measure ANOVA with SPSS/WIN 18.0. Quantitative results show that self-efficacy, interpersonal relationships, attitudes in the workplace, occupational performance capacity, and levels of empowered execute were significantly better in the experimental group compared to the control group. Study findings indicate that this empowerment program for persons with chronic mental illness is effective for improving self efficacy, interpersonal skills, attitudes in the workplace, occupational performance capacity, levels of empowered execute.

The association between trauma and chronic medical conditions in individuals with severe mental illness.

PubMed

Raab, Phillip Andrew; Claypoole, Keith Harvey; Hayashi, Kentaro; Baker, Charlene

2012-10-01

Based on the concept of allostatic load, this study proposed and evaluated a model for the relationship between childhood trauma, chronic medical conditions, and intervening variables affecting this relationship in individuals with severe mental illness. Childhood trauma, adult trauma, major depressive disorder symptoms, posttraumatic stress disorder symptoms, health risk factors, and chronic medical conditions were retrospectively assessed using a cross-sectional survey design in a sample of 117 individuals with severe mental illness receiving public mental health services. Path analyses produced a good-fitting model, with significant pathways from childhood to adult trauma and from adult trauma to chronic medical conditions. Multisample path analyses revealed the equivalence of the model across sex. The results support a model for the relationship between childhood and adult trauma and chronic medical conditions, which highlights the pathophysiological toll of cumulative trauma experienced across the life span and the pressing need to prevent retraumatization in this population.

[Siblings of chronically ill adolescents: does chronic illness have effects on their development potentials?].

PubMed

Boeger, A; Seiffge-Krenke, I

1996-12-01

Sibling relationships have been studied by developmental psychologists for a long time. Whereas previous research on this topic was focused on examining variables such as gender, age differences and sibling sequence, recent research efforts have directed more attention towards understanding the functions siblings perform for one another and what kinds of emotional relationships exist between them. In this regard, we became interested in identifying the special burdens which siblings of chronically sick children and adolescents must deal with. Two case studies are presented here selected from the research findings obtained from investigation in our research project. Coping with chronic illness as seen in juvenile diabetes. These case studies demonstrate that healthy siblings of chronically sick adolescents may be subjected to considerable burdens and illustrate, as well, the kinds of coping mechanisms siblings adopt in order to deal with them.

Siblings of Adults with Mild Intellectual Deficits or Mental Illness: Differential Life Course Outcomes

PubMed Central

Taylor, Julie Lounds; Greenberg, Jan S.; Seltzer, Marsha Mailick; Floyd, Frank J.

2008-01-01

The present study contrasted the later life sibling relationships, patterns of family formation, and psychological distress and well-being of siblings of adults with disabilities to a non-disabled normative group. We identified 268 siblings of adults with mild intellectual deficits and 83 siblings of adults with mental illness from the Wisconsin Longitudinal Study, a prospective longitudinal study that followed participants from age 18 to age 64. Compared to the norm (n = 791), siblings of adults with mild intellectual deficits had more contact with family members and were more likely to live in the same state as the sibling with the disability, but reported less affective closeness. Siblings of adults with mental illness reported more psychological distress, less psychological well-being and less adaptive personality characteristics compared to the norm, particularly for siblings of men with mental illness. There were no differences between groups in the patterns of marriage and childbearing. PMID:19102611

Differences in illness perception between children with cancer and other chronic diseases and their parents.

PubMed

Szentes, Annamária; Kökönyei, Gyöngyi; Békési, Andrea; Bokrétás, Ildikó; Török, Szabolcs

2017-10-01

The purpose of this study was to explore the differences in illness perception between children with cancer and other chronic diseases. A secondary aim was to examine the similarities and differences between the illness perception of these children and their parents. The Revised Illness Perception Questionnaire (IPQ-R) was used to measure the children's and parents' illness perceptions. In this study, 184 children (ages 8-18 years) and their caregivers completed the questionnaires. This study shows that children with cancer feel that they have greater control over their treatment compared to the other two groups. The children's parents have more pessimistic views of the illness than their children. Examinations of illness perceptions among paediatric cancer patients and their families are essential in designing psychosocial interventions for these families. The clinical value of our results can help better understand the cancer-specific features of illness perceptions.

How do high cost-sharing policies for physician care affect inpatient care use and costs among people with chronic disease?

PubMed

Xin, Haichang

2015-01-01

Rapidly rising health care costs continue to be a significant concern in the United States. High cost-sharing strategies thus have been widely used to address rising health care costs. Since high cost-sharing policies can reduce needed care as well as unneeded care use, it raises the concern whether these policies for physician care are a good strategy for controlling costs among chronically ill patients, especially whether utilization and costs in inpatient care will increase in response. This study examined whether high cost sharing in physician care affects inpatient care utilization and costs differently between individuals with and without chronic conditions. Findings from this study will contribute to the insurance benefit design that can control care utilization and save costs of chronically ill individuals. Prior studies suffered from gaps that limit both internal validity and external validity of their findings. This study has its unique contributions by filling these gaps jointly. The study used data from the 2007 Medical Expenditure Panel Survey, a nationally representative sample, with a cross-sectional study design. Instrumental variable technique was used to address the endogeneity between health care utilization and cost-sharing levels. We used negative binomial regression to analyze the count data and generalized linear models for costs data. To account for national survey sampling design, weight and variance were adjusted. The study compared the effects of high cost-sharing policies on inpatient care utilization and costs between individuals with and without chronic conditions to answer the research question. The final study sample consisted of 4523 individuals; among them, 752 had hospitalizations. The multivariate analysis demonstrated consistent patterns. Compared with low cost-sharing policies, high cost-sharing policies for physician care were not associated with a greater increase in inpatient care utilization (P = .86 for chronically ill people and P = .67 for healthy people, respectively) and costs (P = .38 for chronically ill people and P = .68 for healthy people, respectively). The sensitivity analysis with a 10% cost-sharing level also generated consistent insignificant results for both chronically ill and healthy groups. Relative to nonchronically ill individuals, chronically ill individuals may increase their utilization and expenditures of inpatient care to a similar extent in response to increased physician care cost sharing. This may be due to cost pressure from inpatient care and short observation window. Although this study did not find evidence that high cost-sharing policies for physician care increase inpatient care differently for individuals with and without chronic conditions, interpretation of this finding should be cautious. It is possible that in the long run, these sick people would demonstrate substantial demands for medical care and there could be a total cost increase for health plans ultimately. Health plans need to be cautious of policies for chronically ill enrollees.

Treatment effect with paliperidone palmitate compared with oral antipsychotics in patients with recent-onset versus more chronic schizophrenia and a history of criminal justice system involvement.

PubMed

Alphs, Larry; Bossie, Cynthia; Mao, Lian; Lee, Erin; Starr, H Lynn

2018-02-01

Long-acting injectable antipsychotics (APs) are not well studied in recent-onset schizophrenia. This exploratory analysis of a study designed to reflect real-world schizophrenia, as defined by patients, interventions and outcomes, compared relative treatment effect between once-monthly paliperidone palmitate (PP) and daily oral APs in patients with recent-onset or chronic illness METHODS: This randomized, open-label, event monitoring board-blinded study compared treatment response in subjects with schizophrenia and a history of criminal justice system involvement following treatment with PP or oral APs for 15 months (ClinicalTrials.gov identifier, NCT01157351). Event-free probabilities were estimated using Kaplan-Meier method; hazard ratios (HRs) were estimated using Cox proportional hazard models. This subgroup analysis analysed data by disease duration (≤5 (recent-onset) or >5 years (chronic illness) since first psychiatric diagnosis). Seventy-seven subjects met the criteria for recent-onset illness; 365 for chronic illness. HRs (95% CI) for treatment failure for oral APs versus PP were 1.73 (0.87-3.45; P = 0.121) for recent-onset and 1.37 (1.02-1.85; P = 0.039) for chronic illness. Most common adverse events for PP versus oral APs were injection site pain (recent-onset, 26% vs. 0%; chronic, 17% vs. 0%), increased weight (14% vs. 6%; 12% vs. 6%), akathisia (14% vs. 9%; 10% vs. 7%), insomnia (12% vs. 17%; 18% vs. 10%) and anxiety (12% vs. 6%; 10% vs. 8%). Although neither pre-planned nor adequately powered, the estimated HRs suggest that the relative advantage of PP over oral APs for reducing the risk for treatment failure may be greater in patients with recent-onset schizophrenia than in those with more chronic illness. © 2015 The Authors. Early Intervention in Psychiatry published by Wiley Publishing Asia Pty Ltd.

Adaptive leadership framework for chronic illness: framing a research agenda for transforming care delivery.

PubMed

Anderson, Ruth A; Bailey, Donald E; Wu, Bei; Corazzini, Kirsten; McConnell, Eleanor S; Thygeson, N Marcus; Docherty, Sharron L

2015-01-01

We propose the Adaptive Leadership Framework for Chronic Illness as a novel framework for conceptualizing, studying, and providing care. This framework is an application of the Adaptive Leadership Framework developed by Heifetz and colleagues for business. Our framework views health care as a complex adaptive system and addresses the intersection at which people with chronic illness interface with the care system. We shift focus from symptoms to symptoms and the challenges they pose for patients/families. We describe how providers and patients/families might collaborate to create shared meaning of symptoms and challenges to coproduce appropriate approaches to care.

Psychosocial issues for children and adolescents with chronic illness: self-esteem, school functioning and sports participation.

PubMed

Vitulano, Lawrence A

2003-07-01

Self-esteem, school functioning, and sports participation are among the most significant psychosocial issues that affect children and adolescents with chronic illness. Although these capacities are essential components of development for all children, they present special concerns for children with limitations of health. Parents, teachers, and coaches play important roles in providing normalizing and gratifying opportunities for children who struggle to be competent and accepted by their peers. Much can be done to provide chronically ill children with experiences and support that will allow them to grow up happier, feel better about themselves, and enjoy more success.

Care meanings, expressions, and experiences of those with chronic mental illness.

PubMed

George, Tamara B

2002-02-01

The care meanings, expressions, and experiences of those with a chronic mental illness living in the community were explored with use of Leininger's Theory of Culture Care Diversity and Universality and the Sunrise Model. Results indicate that people with chronic mental illness have identifiable values, norms, and lifeways that set them apart from the dominant culture. Cultural and social structure factors, ethnohistory, and environmental context influence their desired care. Nurses can use this knowledge to provide culturally congruent care in new ways to enhance the quality of life, productivity, and well-being of this subculture. Copyright 2002 by W.B. Saunders Company

Chronically ill rural women: self-identified management problems and solutions.

PubMed

Cudney, Shirley; Sullivan, Therese; Winters, Charlene A; Paul, Lynn; Oriet, Pat

2005-03-01

To add to the knowledge base of illness management of chronically ill, rural women by describing the self-identified problems and solutions reported by women participants in the online health-education segment of the Women to Women (WTW) computer outreach project. WTW is a research-based computer intervention providing health education and online peer support for rural women with chronic diseases. Messages posted to the online chat room were examined to determine the women's self-management problems and solutions. The self-identified problems were: (1) difficulties in carrying through on self-management programmes; (2) negative fears and feelings; (3) poor communication with care providers; and (4) disturbed relationships with family and friends. The self-identified solutions to these problems included problem-solving techniques that were tailored to the rural lifestyle. Although not all problems were 'solvable', they could be 'lived with' if the women's prescriptions for self-management were used. Glimpses into the women's day-to-day experiences of living with chronic illness gleaned from the interactive health-education discussions will give health professionals insights into the women's efforts to manage their illnesses. The data provide health professionals with information to heighten their sensitivity to their clients' day-to-day care and educational needs.

Stigma of visible and invisible chronic conditions.

PubMed

Joachim, G; Acorn, S

2000-07-01

Nurses deliver care to people with various forms of chronic illnesses and conditions. Some chronic conditions, such as paraplegia, are visible while others, such as diabetes, are invisible. Still others, such as multiple sclerosis, are both visible and invisible. Having a chronic illness or condition and being different from the general population subjects a person to possible stigmatization by those who do not have the illness. Coping with stigma involves a variety of strategies including the decision about whether to disclose the condition and suffer further stigma, or attempt to conceal the condition or aspects of the condition and pass for normal. We present a beginning framework that describes the relationship between the elements of stigma and the decision to disclose or hide a chronic condition based on its visibility or invisibility. The specific aims were to combine the results from a meta-study on qualitative research with a review of the quantitative literature, then develop a theoretical framework. Although an understanding of how patients cope with stigmatizing conditions is essential for nurses who aim to deliver comprehensive individualized patient care, there is little current literature on this subject. The relationship between visibility and invisibility and disclosure and non-disclosure remains poorly understood. A framework to facilitate a deeper understanding of the dynamics of chronic illnesses and conditions may prove useful for practice.

Systematic Review: Bullying Involvement of Children With and Without Chronic Physical Illness and/or Physical/Sensory Disability-a Meta-Analytic Comparison With Healthy/Nondisabled Peers.

PubMed

Pinquart, Martin

2017-04-01

To compare levels of victimization and perpetration associated with bullying among children and adolescents with and without chronic physical illnesses and/or physical or sensory disabilities. In total, 107 studies were identified using a systematic search in electronic databases and cross-referencing. A random-effects meta-analysis was computed. Children and adolescents with chronic physical illness or disability were more likely to be victims of bullying in general (odds ratio [OR] = 1.65), particularly physical bullying (OR = 1.47), relational bullying (OR = 1.47), verbal bullying (OR = 1.67), cyberbullying (OR = 1.39), and illness-specific teasing (OR = 5.29). They were also more likely to be bullies in general (OR = 1.28), as well physical (OR = 1.38) and relational bullies (OR = 1.13). The effect sizes varied across different illnesses and disabilities and, in part, by visibility of the disease, school type, and year of assessment. Although most between-group differences tend to be small, some form of intervention is needed to reduce bullying among children and adolescents with chronic physical illnesses and/or physical or sensory disabilities, and illness-specific weight- and appearance-related teasing in particular. © The Author 2016. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

[Chronic pulmonary diseases: point of view of partners and their assessments with regard to the effects of lung sports].

PubMed

Nell, C; Kehr, K; Hildebrandt, O; Sohrabi, K; Cassel, W; Greulich, T; Koehler, K-I; Koehler, U

2011-12-01

Chronic diseases of the respiratory organs have, besides restrictions of lung function, also physical, mental and social consequences. The chronic disease impacts negatively not only the patient's own quality of life but also that of his/her partner and/or relative. As treatment modalities, besides drug therapy, above all outpatient rehabilitation measures have proved to be effective. In this pilot study we sought answers to three questions: (i) How is the quality of life of the patient's partner and/or relative influenced by the disease? How does the partner/relative assess the effect of the disease on the chronically ill patient? How does the partner/relative assess the effect of lung sports on the chronically ill patient? A specially conceived questionnaire was given to the partners/relatives of 25 patients with chronic pulmonary diseases. The patients, 23 with chronic obstructive pulmonary disease and 2 with pulmonary fibrosis, have been participating in lung sports once a week for more than three years. The average age of the patients was 67 years. The patients' illness also negatively influenced the quality of life of the partner to a considerable extent. The impact of the patients' pulmonary disease on the healthy partner was assessed as being rather moderate. Restrictions of social life were essentially influenced by the amount of assistance required by the pulmonary patient. The therapeutic effects of lung sports on the well-being of the patient were aways considered to be positive by the respective partner/relatives. A chronic pulmonary illness also has a negative influence on the partner/relative's quality of life. The necessity for extensive assistance in daily life is accompanied by a considerable negative impact on the partner's quality of life. According to the opinion of the partner/relative, lung sports have positive effects in all of the chronically ill patient's fields of life. © Georg Thieme Verlag KG Stuttgart · New York.

Issues in Sexuality for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This annotated bibliography focuses on sexuality issues regarding adolescents and young adults with disabilities and chronic illnesses. The resources are grouped into the following categories: psychosocial development (23 references); attitudes and knowledge (11 references); sex education (34 references); sexual abuse (four references);…

Factors Promoting Mental Health of Adolescents Who Have a Parent with Mental Illness: A Longitudinal Study.

PubMed

Van Loon, L M A; Van De Ven, M O M; Van Doesum, K T M; Hosman, C M H; Witteman, C L M

Children of parents with mental illness have an elevated risk of developing a range of mental health and psychosocial problems. Yet many of these children remain mentally healthy. The present study aimed to get insight into factors that protect these children from developing internalizing and externalizing problems. Several possible individual, parent-child, and family protective factors were examined cross-sectionally and longitudinally in a sample of 112 adolescents. A control group of 122 adolescents whose parents have no mental illness was included to explore whether the protective factors were different between adolescents with and without a parent with mental illness. Cross-sectional analyses revealed that high self-esteem and low use of passive coping strategies were related to fewer internalizing and externalizing problems. Greater self-disclosure was related to fewer internalizing problems and more parental monitoring was related to fewer externalizing problems. Active coping strategies, parental support, and family factors such as cohesion were unrelated to adolescent problem behavior. Longitudinal analyses showed that active coping, parental monitoring, and self-disclosure were protective against developing internalizing problems 2 years later. We found no protective factors for externalizing problems. Moderation analyses showed that the relationships between possible protective factors and adolescent problem behavior were not different for adolescents with and without a parent with mental illness. The findings suggest that adolescents' active coping strategies and parent-child communication may be promising factors to focus on in interventions aimed at preventing the development of internalizing problems by adolescents who have a parent with mental illness.

Chronic Migraine: An Update on Physiology, Imaging, and the Mechanism of Action of Two Available Pharmacologic Therapies.

PubMed

Aurora, Sheena K; Brin, Mitchell F

2017-01-01

Several lines of research support the hypothesis that migraine is a spectrum of illness, with clinical symptoms that vary along a continuum from episodic migraine to chronic migraine. Physiologic changes may result in episodic migraine evolving into chronic migraine over months to years in susceptible individuals. With chronification, headache frequency increases, becoming more disabling and less responsive to therapy. Neurophysiologic and functional imaging research has reported that chronic migraine may be associated with severity-specific metabolic, functional, and structural abnormalities in the brainstem. Without longitudinal studies, it is unclear whether these changes may represent a continuum of individual progression and/or are reversible. Furthermore, chronic migraine is associated with larger impairments in cortical processing of sensory stimuli when compared with episodic migraine, possibly caused by more pronounced cortical hyperexcitability. Progressive changes in nociceptive thresholds and subsequent central sensitization due to recurrent migraine attacks in vulnerable individuals contribute to the chronic migraine state. This may result in changes to baseline neurologic function between headache attacks, evident in both electrophysiological and functional imaging research. Patients experiencing migraine chronification may report increased non-headache pain, fatigue, psychiatric disorders (eg, depression, anxiety), gastrointestinal complaints, and other somatic conditions associated with their long-term experience with migraine pain. Recent research provides a foundation for differentiating episodic and chronic migraine based on neurophysiologic and neuroimaging tools. In this literature review, we consider these findings in the context of models designed to explain the physiology and progression of episodic migraine into chronic migraine, and consider treatment of chronic migraine in susceptible individuals. Advances in pharmacotherapy provide treatment options for chronic migraine. Of the currently available treatment options, only onabotulinumtoxinA and topiramate have received regulatory approval and have demonstrated efficacy in patients with chronic migraine, although the exact mechanisms of action are not fully elucidated. © 2016 The Authors Headache published by Wiley Periodicals, Inc. on behalf of American Headache Society.

e-Patients Perceptions of Using Personal Health Records for Self-management Support of Chronic Illness.

PubMed

Gee, Perry M; Paterniti, Debora A; Ward, Deborah; Soederberg Miller, Lisa M

2015-06-01

Chronic illness self-management is largely moving from healthcare professionals and into the hands of the patient. One tool that has been promoted to facilitate self-management support of chronic illness by policymakers, health advocates, providers, and consumers is the personal health record. Little is known about how consumers effectively use personal health records for self-management support and for productive patient-provider interactions. The purpose of this study was to learn from chronically ill engaged, experienced, and educated (e-patient) adults how and why they use personal health records for self-management support and productive patient-provider interactions. Eighteen purposively selected consumers were interviewed in two communities. Qualitative description methods were used, and we used a grounded theory approach to analyzing interview data, which was digitally recorded and transcribed verbatim. We identified four major thematic categories that capture the perceptions of the chronically ill using personal health records: (1) patient engagement and health self-management, (2) access to and control over personal health data, (3) promotion of productive communication, and (4) opportunities for training and education. Knowledge gained from the e-patient personal health record users suggest that making improvements to the portal system and providing education to consumers and providers will increase the utility among the experienced users and encourage new users to embrace adoption and use.

[Effects of a Multi-disciplinary Approached, Empowerment Theory Based Self-management Intervention in Older Adults with Chronic Illness].

PubMed

Park, Chorong; Song, Misoon; Cho, Belong; Lim, Jaeyoung; Song, Wook; Chang, Heekyung; Park, Yeon-Hwan

2015-04-01

The purpose of this study was to develop a multi-disciplinary self-management intervention based on empowerment theory and to evaluate the effectiveness of the intervention for older adults with chronic illness. A randomized controlled trial design was used with 43 Korean older adults with chronic illness (Experimental group=22, Control group=21). The intervention consisted of two phases: (1) 8-week multi-disciplinary, team guided, group-based health education, exercise session, and individual empowerment counseling, (2) 16-week self-help group activities including weekly exercise and group discussion to maintain acquired self-management skills and problem-solving skills. Baseline, 8-week, and 24-week assessments measured health empowerment, exercise self-efficacy, physical activity, and physical function. Health empowerment, physical activity, and physical function in the experimental group increased significantly compared to the control group over time. Exercise self-efficacy significantly increased in experimental group over time but there was no significant difference between the two groups. The self-management program based on empowerment theory improved health empowerment, physical activity, and physical function in older adults. The study finding suggests that a health empowerment strategy may be an effective approach for older adults with multiple chronic illnesses in terms of achieving a sense of control over their chronic illness and actively engaging self-management.

Schizophrenia, smoking status, and performance on the matrics Cognitive Consensus Battery.

PubMed

Reed, Alexandra C; Harris, Josette G; Olincy, Ann

2016-12-30

Cognitive deficits and high rates of nicotine dependence are consistently documented in the schizophrenia literature. However, there is currently no consensus about how regular smoking influences cognition in schizophrenia or which cognitive domains are most affected by chronic smoking. Previous studies have also failed to disambiguate the effects of chronic nicotine from those of acute exposure. The current study uses a novel approach to testing nicotine addicted patients at a time-point between acute enhancement and withdrawal and implements the MATRICS Cognitive Consensus Battery (MCCB) to compare the overall cognitive performance of regular smokers (n=40) and nonsmokers (n=36) with schizophrenia. Controlling for age, gender, and education, smokers with schizophrenia were significantly more impaired on a visual learning task, the Brief Visuospatial Memory Test-Revised (BVMT-R), than their nonsmoking peers. Among smokers, smoking behavior (i.e., exhaled carbon monoxide levels of smokers) predicted BVMT-R T score; greater smoking was associated with more impaired visual learning. Negative symptom severity was not predictive of greater visual learning deficits in smokers or nonsmokers. Future longitudinal research will be required to determine if there is a dose-response relationship between chronic nicotine and visual learning impairment in patients at various stages of psychotic illness. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Cost and economic burden of illness over 15 years in Nepal: A comparative analysis.

PubMed

Swe, Khin Thet; Rahman, Md Mizanur; Rahman, Md Shafiur; Saito, Eiko; Abe, Sarah K; Gilmour, Stuart; Shibuya, Kenji

2018-01-01

With an increasing burden of non-communicable disease in Nepal and limited progress towards universal health coverage, country- and disease-specific estimates of financial hardship related to healthcare costs need to be evaluated to protect the population effectively from healthcare-related financial burden. To estimate the cost and economic burden of illness and to assess the inequality in the financial burden due to catastrophic health expenditure from 1995 to 2010 in Nepal. This study used nationally representative Nepal Living Standards Surveys conducted in 1995 and 2010. A Bayesian two-stage hurdle model was used to estimate average cost of illness and Bayesian logistic regression models were used to estimate the disease-specific incidence of catastrophic health payment and impoverishment. The concentration curve and index were estimated by disease category to examine inequality in healthcare-related financial hardship. Inflation-adjusted mean out-of-pocket (OOP) payments for chronic illness and injury increased by 4.6% and 7.3%, respectively, while the cost of recent acute illness declined by 1.5% between 1995 and 2010. Injury showed the highest incidence of catastrophic expenditure (30.7% in 1995 and 22.4% in 2010) followed by chronic illness (12.0% in 1995 and 9.6% in 2010) and recent acute illness (21.1% in 1995 and 7.8% in 2010). Asthma, diabetes, heart conditions, malaria, jaundice and parasitic illnesses showed increased catastrophic health expenditure over time. Impoverishment due to injury declined most (by 12% change in average annual rate) followed by recent acute illness (9.7%) and chronic illness (9.6%) in 15 years. Inequality analysis indicated that poorer populations with recent acute illness suffered more catastrophic health expenditure in both sample years, while wealthier households with injury and chronic illnesses suffered more catastrophic health expenditure in 2010. To minimize the economic burden of illness, several approaches need to be adopted, including social health insurance complemented with an upgraded community-based health insurance system, subsidy program expansion for diseases with high economic burden and third party liability motor insurance to reduce the economic burden of injury.

Cost and economic burden of illness over 15 years in Nepal: A comparative analysis

PubMed Central

Rahman, Md. Mizanur; Rahman, Md. Shafiur; Saito, Eiko; Abe, Sarah K.; Gilmour, Stuart; Shibuya, Kenji

2018-01-01

Background With an increasing burden of non-communicable disease in Nepal and limited progress towards universal health coverage, country- and disease-specific estimates of financial hardship related to healthcare costs need to be evaluated to protect the population effectively from healthcare-related financial burden. Objectives To estimate the cost and economic burden of illness and to assess the inequality in the financial burden due to catastrophic health expenditure from 1995 to 2010 in Nepal. Methods This study used nationally representative Nepal Living Standards Surveys conducted in 1995 and 2010. A Bayesian two-stage hurdle model was used to estimate average cost of illness and Bayesian logistic regression models were used to estimate the disease-specific incidence of catastrophic health payment and impoverishment. The concentration curve and index were estimated by disease category to examine inequality in healthcare-related financial hardship. Findings Inflation-adjusted mean out-of-pocket (OOP) payments for chronic illness and injury increased by 4.6% and 7.3%, respectively, while the cost of recent acute illness declined by 1.5% between 1995 and 2010. Injury showed the highest incidence of catastrophic expenditure (30.7% in 1995 and 22.4% in 2010) followed by chronic illness (12.0% in 1995 and 9.6% in 2010) and recent acute illness (21.1% in 1995 and 7.8% in 2010). Asthma, diabetes, heart conditions, malaria, jaundice and parasitic illnesses showed increased catastrophic health expenditure over time. Impoverishment due to injury declined most (by 12% change in average annual rate) followed by recent acute illness (9.7%) and chronic illness (9.6%) in 15 years. Inequality analysis indicated that poorer populations with recent acute illness suffered more catastrophic health expenditure in both sample years, while wealthier households with injury and chronic illnesses suffered more catastrophic health expenditure in 2010. Conclusion To minimize the economic burden of illness, several approaches need to be adopted, including social health insurance complemented with an upgraded community-based health insurance system, subsidy program expansion for diseases with high economic burden and third party liability motor insurance to reduce the economic burden of injury. PMID:29617393

[Illness behavior in chronic pain].

PubMed

Lavielle, Pilar; Clark, Patricia; Martínez, Homero; Mercado, Francisco; Ryan, Gery

2008-01-01

To describe the illness behaviour in patients with chronic pain. We conducted semi-structured interviews to 53 patients during 2000, in a tertiary care center. We explored their initial interpretations, responses and subsequent practices to chronic pain, until they received a diagnosis that satisfied them. Illness behaviour was determined by pain intensity and disability; beliefs regarding pain causes, trust in social networks, and quality and satisfaction with the health care systems. In terms of the decision to seek care, the first option was to go to the popular sector, followed by consulting a general physician, and as last resort, to go to a tertiary care center ("with a specialist"). Illness behaviour should be conceptualized as a process, which combines the use of different health care sectors by the same subjects, as a result of care provided sequentially by each previous sector.

One-year mortality after recovery from critical illness: A retrospective cohort study.

PubMed

Lokhandwala, Sharukh; McCague, Ned; Chahin, Abdullah; Escobar, Braiam; Feng, Mengling; Ghassemi, Mohammad M; Stone, David J; Celi, Leo Anthony

2018-01-01

Factors associated with one-year mortality after recovery from critical illness are not well understood. Clinicians generally lack information regarding post-hospital discharge outcomes of patients from the intensive care unit, which may be important when counseling patients and families. We sought to determine which factors among patients who survived for at least 30 days post-ICU admission are associated with one-year mortality. Single-center, longitudinal retrospective cohort study of all ICU patients admitted to a tertiary-care academic medical center from 2001-2012 who survived ≥30 days from ICU admission. Cox's proportional hazards model was used to identify the variables that are associated with one-year mortality. The primary outcome was one-year mortality. 32,420 patients met the inclusion criteria and were included in the study. Among patients who survived to ≥30 days, 28,583 (88.2%) survived for greater than one year, whereas 3,837 (11.8%) did not. Variables associated with decreased one-year survival include: increased age, malignancy, number of hospital admissions within the prior year, duration of mechanical ventilation and vasoactive agent use, sepsis, history of congestive heart failure, end-stage renal disease, cirrhosis, chronic obstructive pulmonary disease, and the need for renal replacement therapy. Numerous effect modifications between these factors were found. Among survivors of critical illness, a significant number survive less than one year. More research is needed to help clinicians accurately identify those patients who, despite surviving their acute illness, are likely to suffer one-year mortality, and thereby to improve the quality of the decisions and care that impact this outcome.

Disease management and the Medicare Modernization Act: "It's the insurance, stupid".

PubMed

Sidorov, Jaan; Schlosberg, Claudia

2005-12-01

While definitions of "disease management" (DM) emphasize quality of care for populations with chronic illness, proponents argue it reduces healthcare costs. Buyers may find disease management organizations' (DMOs') use of clinical guidelines, physician collaboration, and promotion of patient self-management intuitively sound, but it is performance guarantees, combined with retrospective effectiveness cost studies, that have driven DMOs' penetration of the commercial insurance market with revenues that exceed $500 million per year. The success of DMOs contributed to the creation of the Chronic Care Improvement Program (CCIP), which is designed to prospectively test the impact of DM on both the quality and cost of care for fee-for-service Medicare beneficiaries with chronic illness. This may lead to an expansion of DM in Medicare, and even greater opportunities for DMOs beyond the $10 billion in 10- year projected growth. For community-based physicians caring for patients with chronic illness, the sharpened focus on chronic care and the growth of DMOs creates some potential advantages. These include more time to treat more patients with acute illness, lower practice costs, opportunities to collaborate over quality, and a greater ability to achieve quality targets set by pay-for-performance arrangements.

Children with Diabetes: Peer Status, Academic Achievement, and Behavior Problems.

ERIC Educational Resources Information Center

Childers, Glenna J.; Carroll, James L.

While the clinical literature frequently asserts that chronic illness negatively affects children's social development, data in support of such assertions are almost without exception obtained in clinical settings from children with chronic illness and their parents, without data from the school or community environment and without control or…

Guidelines and Procedures for Meeting the Specialized Physical Health Care Needs of Pupils.

ERIC Educational Resources Information Center

Lunden, Janet, Ed.

This monograph presents the California State guidelines for providing physical health care services within the public school setting. Part I addresses administrative concerns. Included are sections on: education and chronic illness; professional roles; referral and evaluation; guidelines and procedures for transporting chronically ill pupils;…

Chronically Ill Children: A Psychologically and Emotionally Deviant Population?

ERIC Educational Resources Information Center

Tavormina, J. B.; And Others

To investigate vulnerability to psychological and emotional stress among chronically ill children, a battery of personality tests was selectively administered to 144 children (5- to 19-years-old) afflicted with one of the following conditions: diabetes, asthma, cystic fibrosis, or hearing impairment. Analyses centered on comparisons of norms…

Psychological and Spiritual Factors in Chronic Illness.

ERIC Educational Resources Information Center

Leifer, Ron

1996-01-01

Asserts the importance of psychological and spiritual factors in the treatment of chronic illness. Discusses the inevitably of sickness, old age, and death, as well as the presence of the physician, patience, pain, and hope. Maintains that reflection on these qualities can benefit both the physician and patient. (MJP)

Adolescents with Chronic Illnesses: Issues for School Personnel. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

The annotated bibliography is intended to give classroom teachers and educational planners background information and resource materials on the psychosocial and health concerns of adolescents with chronic illnesses. The 26 bibliographic citations date from 1980 to 1988 and are grouped into the following categories: general medical and social…

Recreation and Leisure: Issues for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This bibliography presents 162 annotated references (including bibliographic materials, training and educational materials, and programs) about issues of recreation and leisure for adolescents and young adults with chronic illnesses and disabilities. Each reference usually contains a full bibliographic citation, a brief descriptive abstract, and…

A School Reentry Program for Chronically Ill Children.

ERIC Educational Resources Information Center

Worchel-Prevatt, Frances F.; Heffer, Robert W.; Prevatt, Bruce C.; Miner, Jennifer; Young-Saleme, Tammi; Horgan, Daniel; Lopez, Molly A.; Frankel, Lawrence; Rae, William A.

1998-01-01

Describes a school reintegration program aimed at overcoming the numerous psychological, physical, environmental, and family-based deterrents to school reentry for chronically ill children. The program uses a systems approach to children's mental health with an emphasis on multiple aspects of the child's environment (i.e., family, medical…

Introduction to Health Promotion for People with Chronic Illness and Disability

ERIC Educational Resources Information Center

Chan, Fong; Chiu, Chung-Yi; Bezyak, Jill L.; Keegan, John

2012-01-01

Health promotion has received increasing attention in rehabilitation counseling research. Health promotion research contributes to theory building and provides the foundation for empirically supported interventions that can improve the health-related quality of life and employment outcomes of people with chronic illness and disability. In this…

Peer Relationships Among Chronically Ill Children.

ERIC Educational Resources Information Center

Johnson, Suzanne Bennett

As new treatments allow chronically ill children to live longer, the relationship between the child's psychological state and his physical condition becomes paramount. Diabetics (N=42) between the ages of 10 and 21 answered questions about their disease. While most respondents did not feel that diabetes had affected relationships with peers,…

Psychological Adjustment and Neuropsychological Performance in Diabetic Patients.

ERIC Educational Resources Information Center

Skenazy, Judy A.; Bigler, Erin D.

1985-01-01

Compared diabetic (N=39) with nondiabetic chronic illness patients (N=20) and healthy controls (N=24). The chronic illness and the diabetic groups had significant elevations on the Hypochondriasis, Depression, and Hysteria scales of the Feschingbauer Abbreviated MMPI. For diabetics, results demonstrated a negligible effect of poor adjustment on…

Quality of Life and School Absenteeism in Children with Chronic Illness

ERIC Educational Resources Information Center

Emerson, Natacha D.; Distelberg, Brian; Morrell, Holly E. R.; Williams-Reade, Jackie; Tapanes, Daniel; Montgomery, Susanne

2016-01-01

Objective: Children and adolescents with a chronic illness (CI) tend to demonstrate diminished physical and social functioning, which contribute to school attendance issues. We investigated the role of social and physical functioning in reducing school absenteeism in children participating in Mastering Each New Direction (MEND), a family-based…

A Comparison of Somatic Compliants among Depressed and Non-Depressed Older Persons.

ERIC Educational Resources Information Center

Waxman, Howard; And Others

1985-01-01

Examined the relationship among somatic complaints, chronic medical illness, and depression in 127 community elderly. Depression and chronic medical illness were significant contributors to somatic complaining both alone and in interaction. Demographic variables and social supports were largely unrelated to depression, somatic complaints, or…

Managing Chronic Illness in the Classroom.

ERIC Educational Resources Information Center

Wishnietsky, Dorothy Botsch; Wishnietsky, Dan H.

An important but often overlooked member of a student's health care team is the teacher. This text covers ways to help teachers and administrators understand the special needs of students suffering from a chronic illness, how to recognize health events that may interfere with learning, and suggestions for appropriate interventions. The book opens…

MAPP: A Multimedia Instructional Program for Youths with Chronic Illness.

ERIC Educational Resources Information Center

Murdock, Peggy O'Hara; McClure, Christopher; Lage, Onelia G.; Sarkar, Dilip; Shaw, Kimberly

The Multimedia Approach to Pregnancy Prevention (MAPP) is an expert intelligence multimedia program administered in outpatient and inpatient clinics in the University of Miami/Jackson Children's Hospital (Florida). The target population for the MAPP program is youths aged 9-14 years, diagnosed with chronic illnesses (asthma, diabetes, and sickle…

A comparison of adherence to hypoglycemic medications between Type 2 diabetes patients with and without serious mental illness

PubMed Central

Kreyenbuhl, Julie; Leith, Jaclyn; Medoff, Deborah R.; Fang, LiJuan; Dickerson, Faith B.; Brown, Clayton H.; Goldberg, Richard W.; Potts, Wendy; Dixon, Lisa B.

2011-01-01

Inadequate self-management of chronic medical conditions like Type 2 diabetes may play a role in the poor health status of individuals with serious mental illnesses. We compared adherence to hypoglycemic medications and blood glucose control between 44 diabetes patients with a serious mental illness and 30 patients without a psychiatric illness. The two groups did not differ in their ability to manage a complex medication regimen as assessed by a performance-based measure of medication management capacity. However, significantly fewer patients with a mental illness self-reported nonadherence to their hypoglycemic regimens compared to those without a mental illness. Although individuals with mental illnesses also had better control of blood glucose, this metabolic parameter was not correlated with adherence to hypoglycemic medications in either patient group. The experience of managing a chronic mental illness may confer advantages to individuals with serious mental illnesses in the self-care of co-occurring medical conditions like Type 2 diabetes. PMID:21459458

Association between component costs, study methodologies, and foodborne illness-related factors with the cost of nontyphoidal Salmonella illness.

PubMed

McLinden, Taylor; Sargeant, Jan M; Thomas, M Kate; Papadopoulos, Andrew; Fazil, Aamir

2014-09-01

Nontyphoidal Salmonella spp. are one of the most common causes of bacterial foodborne illness. Variability in cost inventories and study methodologies limits the possibility of meaningfully interpreting and comparing cost-of-illness (COI) estimates, reducing their usefulness. However, little is known about the relative effect these factors have on a cost-of-illness estimate. This is important for comparing existing estimates and when designing new cost-of-illness studies. Cost-of-illness estimates, identified through a scoping review, were used to investigate the association between descriptive, component cost, methodological, and foodborne illness-related factors such as chronic sequelae and under-reporting with the cost of nontyphoidal Salmonella spp. illness. The standardized cost of nontyphoidal Salmonella spp. illness from 30 estimates reported in 29 studies ranged from $0.01568 to $41.22 United States dollars (USD)/person/year (2012). The mean cost of nontyphoidal Salmonella spp. illness was $10.37 USD/person/year (2012). The following factors were found to be significant in multiple linear regression (p≤0.05): the number of direct component cost categories included in an estimate (0-4, particularly long-term care costs) and chronic sequelae costs (inclusion/exclusion), which had positive associations with the cost of nontyphoidal Salmonella spp. illness. Factors related to study methodology were not significant. Our findings indicated that study methodology may not be as influential as other factors, such as the number of direct component cost categories included in an estimate and costs incurred due to chronic sequelae. Therefore, these may be the most important factors to consider when designing, interpreting, and comparing cost of foodborne illness studies.

A regressional analysis of maladaptive rumination, illness perception and negative emotional outcomes in Asian patients suffering from depressive disorder.

PubMed

Lu, Yanxia; Tang, Catherine; Liow, Chiew Shan; Ng, Winnie Wei Ni; Ho, Cyrus Su Hui; Ho, Roger Chun Mun

2014-12-01

Although illness perception has been shown to be associated with illness outcomes in various chronic physical diseases, the association of illness perception and rumination are not well elucidated in mental disorders. This study aims to investigate the mediational effects of adaptive and maladaptive rumination in the relationship between illness perception and negative emotions (depression, anxiety and stress) in male and female patients (N=110) suffering from depressive disorders. The results showed that maladaptive rumination mediated the relationship between illness perception and negative emotions in both male and female depressive patients. However, no mediating effects of adaptive rumination were found in the relationship between illness perception and negative emotion. Maladaptive rumination mediated the relationship between perceived identity, chronicity of illness, consequences of illness and emotional representation of illness and negative emotions in males. It also mediated the relationship between perceived identity and emotional representation of illness and negative emotions in females. The results, possible clinical implications and limitations of this study are also discussed. Copyright © 2014 Elsevier B.V. All rights reserved.

Longitudinal Change in Telomere Length and the Chronic Stress Response in a Randomized Pilot Biobehavioral Clinical Study: Implications for Cancer Prevention

PubMed Central

Biegler, Kelly A.; Anderson, Amanda K. L.; Wenzel, Lari B.; Osann, Kathryn; Nelson, Edward L.

2015-01-01

Shortened telomere length is associated with increased cancer incidence and mortality. Populations experiencing chronic stress have accelerated telomere shortening. In this exploratory study, we examined associations between longitudinal changes in patient reported outcomes (PRO) of psychologic distress and peripheral blood mononuclear cell (PBMC) telomere length to test the hypothesis that modulation of the chronic stress response would also modulate telomere dynamics. Archived PBMC specimens (N = 22) were analyzed from a completed and reported randomized, longitudinal trial that showed a psychosocial telephone counseling intervention improved quality of life (QOL) and modulated stress-associated biomarkers in cervical cancer survivors. PROs and biospecimens were collected at baseline and 4 months postenrollment. Telomere length of archived PBMCs was evaluated using the flow-FISH assay. Longitudinal changes in psychologic distress, measured by the Brief Symptom Inventory-18, were significantly associated with increased telomere length within the CD14+ (monocyte) population (r = 0.46, P = 0.043); a similar trend was observed for the CD14− population. Longitudinal changes in telomere length of the CD14− subset, primarily T lymphocytes, were associated with longitudinal increases in the naive T-cell population (r = 0.49, P = 0.052). Alterations in the chronic stress response were associated with modulation of telomere length in PBMCs, with evidence for mobilization of “younger” cells from progenitor populations. These data provide preliminary support for the (i) capacity to modulate the chronic stress response and the associated accelerated telomere shortening, (ii) inclusion of telomere length in the biobehavioral paradigm, and (iii) potential link between the chronic stress response and biologic mechanisms responsible for genomic integrity and carcinogenesis. PMID:22827974

Internet Searching About Disease Elicits a Positive Perception of Own Health When Severity of Illness Is High: A Longitudinal Questionnaire Study

PubMed Central

Greving, Hannah

2016-01-01

Background The Internet is one of the primary sources for health information. However, in research, the effects of Internet use on the perception of one’s own health have not received much attention so far. Objective This study tested how Internet use for acquiring health information and severity of illness influence patients with a chronic disease with regard to the perception of their own health. Negative psychological states are known to lead to preferential processing of positive information. In particular, the self-directed nature of Internet use provides room for such biases. Therefore, we predicted that patients experiencing negative health states more frequently, due to more frequent episodes of a chronic illness, will gain a more positive perception of their health if they use the Internet frequently to gain health information, but not if they use the Internet rarely. This effect was not expected for other sources of information. Methods A longitudinal questionnaire study with two measurement points—with a 7-month time lag—tested the hypothesis in a sample of patients with chronic inflammatory bowel disease (n=208). This study assessed patients’ frequency of Internet use, their participation in online social support groups, their use of other sources of health information, and several indicators of the participants’ perceptions of their own health. A structure equation model (SEM) was used to test the predictions separately for Internet searches and other sources of information. Results Data analysis supported the prediction; the interaction between frequency of health-related information searches and frequency of episodes at the first measurement point (T1) was related to participants’ positive perceptions of their own health at the second measurement point (T2) (B=.10, SE=.04, P=.02) above and beyond the perceptions of their own health at T1. When participants used the Internet relatively rarely (-1 SD), there was no relationship between frequency of episodes and positive perceptions of their own health (B=-.11, SE=.14, t 203=-0.82, P=.41). In contrast, when participants used the Internet relatively often (+1 SD), the more frequently they had those episodes the more positive were the perceptions of their own health (B=.36, SE=.15, t 203=2.43, P=.02). Additional SEM analyses revealed that this effect occurs exclusively when information is searched for on the Internet, but not when other sources of information are consulted, nor when online social support groups are joined. Conclusions The results of this study suggest that patients might process information from the Internet selectively, in an unbalanced, biased fashion, with the formation of a self-serving (ie, positive) perception of own health. At the same time, this bias contributes to the ability of patients to cope psychologically with their disease. PMID:26944335

Factors associated with self-esteem in persons with morbid obesity and in persons with chronic obstructive pulmonary disease: a cross-sectional study.

PubMed

Bonsaksen, Tore; Fagermoen, May Solveig; Lerdal, Anners

2015-01-01

Living with chronic illnesses can be stressful and may negatively impact persons' self-esteem. Personal factors, like self-efficacy and illness perceptions, and also factors related to the environment, activity, and participation may be associated with self-esteem in chronic illness populations. This cross-sectional comparative study explored sociodemographic variables, work, physical activity, illness perceptions, and general self-efficacy in relation to self-esteem in persons with morbid obesity and in persons with chronic obstructive pulmonary disease (COPD). The study had a cross-sectional design. A total of 223 eligible participants were recruited from patient education courses, and data were collected at baseline. Self-esteem was measured with The Rosenberg self-esteem scale; the general self-efficacy scale was used to measure self-efficacy, and brief illness perception questionnaire was also used. This is an instrument assessing cognitions about the illness and emotional responses towards it. Multivariate linear regression was used in the statistical analyses. In obese participants (n = 134), higher self-esteem was associated with lower emotional response, a shorter timeline, and higher general self-efficacy. In COPD participants (n = 89), higher self-esteem was associated with higher general self-efficacy. The independent variables accounted for 42.9% (morbid obesity) and 49.4% (COPD) of the self-esteem variance. In participants in both illness groups, higher self-efficacy was associated with increased self-esteem. A shorter timeline and lower emotional response to illness was related to higher self-esteem only for the obese participants. The results indicate that believing in one's capacity to cope with everyday challenges is important for self-esteem in persons with morbid obesity and in persons with COPD, whereas illness perceptions related to the duration of illness and the coping with emotions also is important for self-esteem in persons with morbid obesity.

The Relationship Between Health Management and Information Behavior Over Time: A Study of the Illness Journeys of People Living With Fibromyalgia.

PubMed

Chen, Annie T

2016-10-25

Over the course of a chronic illness, patients face many challenges, including understanding what is happening to them and developing an effective strategy for managing illness. While there is existing literature concerning how people seek health-related information and cope with chronic illnesses, there is a need for additional research on how information affects patients' understandings of their illness, and how changes in this understanding affect their health management strategies over time. This study examined how health management, information seeking, and information consumption and use processes are related throughout an illness. A diversified recruitment strategy involving multiple media channels was used to recruit participants for an interview study. During the interviews, participants were asked to draw an "illness journey" timeline. The data were analyzed using a qualitative approach drawn from Interpretative Phenomenological Analysis and Grounded Theory. The study identified four main health management features of illness journeys: onset, progression toward diagnosis, acceptance, and development of an effective management strategy. The study then focused on how information seeking changes over illness journeys, particularly in terms of a transition from active information seeking to monitoring with intermittent focused searching. Last, the paper describes the information consumption and use processes that patients engaged in throughout their journey. This study makes three important contributions to the field. First, it presents an integrated conceptualization of how health management and information behaviors are related on illness journeys. Second, it adds to our existing knowledge on health literacy and self-management of chronic illness. Third, the study has implications for health interface design.

Dynamic Mapping of Cortical Development before and after the Onset of Pediatric Bipolar Illness

ERIC Educational Resources Information Center

Gogtay, Nitin; Ordonez, Anna; Herman, David H.; Hayashi, Kiralee M.; Greenstein, Deanna; Vaituzis, Cathy; Lenane, Marge; Clasen, Liv; Sharp, Wendy; Giedd, Jay N.; Jung, David; Nugent, Tom F., III; Toga, Arthur W.; Leibenluft, Ellen; Thompson, Paul M.; Rapoport, Judith L.

2007-01-01

Background: There are, to date, no pre-post onset longitudinal imaging studies of bipolar disorder at any age. We report the first prospective study of cortical brain development in pediatric bipolar illness for 9 male children, visualized before and after illness onset. Method: We contrast this pattern with that observed in a matched group of…

White matter microstructural changes in adolescent anorexia nervosa including an exploratory longitudinal study

PubMed Central

Vogel, Katja; Timmers, Inge; Kumar, Vinod; Nickl-Jockschat, Thomas; Bastiani, Matteo; Roebroek, Alard; Herpertz-Dahlmann, Beate; Konrad, Kerstin; Goebel, Rainer; Seitz, Jochen

2016-01-01

Background Anorexia nervosa (AN) often begins in adolescence, however, the understanding of the underlying pathophysiology at this developmentally important age is scarce, impeding early interventions. We used diffusion tensor imaging (DTI) to investigate microstructural white matter (WM) brain changes including an experimental longitudinal follow-up. Methods We acquired whole brain diffusion-weighted brain scans of 22 adolescent female hospitalized patients with AN at admission and nine patients longitudinally at discharge after weight rehabilitation. Patients (10–18 years) were compared to 21 typically developing controls (TD). Tract-based spatial statistics (TBSS) were applied to compare fractional anisotropy (FA) across groups and time points. Associations between average FA values of the global WM skeleton and weight as well as illness duration parameters were analyzed by multiple linear regression. Results We observed increased FA in bilateral frontal, parietal and temporal areas in AN patients at admission compared to TD. Higher FA of the global WM skeleton at admission was associated with faster weight loss prior to admission. Exploratory longitudinal analysis showed this FA increase to be partially normalized after weight rehabilitation. Conclusions Our findings reveal a markedly different pattern of WM microstructural changes in adolescent AN compared to most previous results in adult AN. This could signify a different susceptibility and reaction to semi-starvation in the still developing brain of adolescents or a time-dependent pathomechanism differing with extend of chronicity. Higher FA at admission in adolescents with AN could point to WM fibers being packed together more closely. PMID:27182488

Divorce and Childhood Chronic Illness: A Grounded Theory of Trust, Gender, and Third-Party Care Providers.

PubMed

Russell, Luke T; Coleman, Marilyn; Ganong, Lawrence H; Gayer, Debra

2016-05-01

Divorced parents face distinct challenges in providing care for chronically ill children. Children's residence in two households necessitates the development of family-specific strategies to ensure coparents' supervision of regimen adherence and the management of children's health care. Utilizing a risk and resilience perspective, a grounded theory study was conducted with 14 divorced parents of children with chronic illnesses. The importance of trust, gender, and relationships with third-party care providers emerged as key themes related to the development of effective coparenting relationships for maintaining children's health. Divorced parents were best able to support the management of their children's chronic conditions when care providers operated as neutral third parties and intermediaries. Collaborative family care may require health care practitioners to avoid being drawn into contentious inter-parental conflicts. © The Author(s) 2016.

Outcomes that matter in chronic illness: a taxonomy informed by self-determination and adult-learning theory.

PubMed

Zubialde, John P; Mold, James; Eubank, Daniel

2009-09-01

The inability to cure disease or reverse dysfunction results in chronic illness. With it, patients, their families, and society face a unique set of needs and challenges. In the United States, its care consumes 75% of total health care resources. Two thirds of Medicare resources are spent on the 25% of beneficiaries having multiple chronic diseases. Surprisingly, health outcomes of greatest importance to this population remain poorly described and researched. A new taxonomy is presented that uses insights from Self Determination Theory and Adult Learning Theory to expand the scope of recognized health outcomes by including what the authors call "outcomes that matter." Targeting this broader set of outcomes may lead to more effective and meaningful care and open new areas for outcomes research in chronic illness management.

'Cool friends': an evaluation of a community befriending programme for young people with cystic fibrosis.

PubMed

Macdonald, Kath; Greggans, Alison

2010-09-01

To evaluate the impact of a community youth befriending programme on a group of young people with chronic illness and their carers. Befriending is said to be highly valued by those who are befriended, improving self-esteem and offering opportunities for increasing skills and social activities. A qualitative longitudinal pilot study of young people with cystic fibrosis, their carers, their befrienders and other personnel, closely involved with the families. Seventeen participants were interviewed over one-year to explore their experiences of befriending. Ten of these were either befriendees (aged 8-18 years) or their parents. Half of these families were interviewed twice; once at the beginning of the befriending relationship and another at one year later. Seven other personnel, closely involved with the young people, were interviewed; two play therapists and two education liaison personnel. A focus group was also held with three befrienders. This range of data sought to reveal a wide perspective on the impact of befriending. Befriending was seen as a good thing by all parties involved. It offered a distraction from illness, respite for carers and helped young people to raise issues of personal importance. Befriending was challenging for the befrienders given the diagnosis of this group of befriendees. Negative experiences could result if pairs are poorly matched or if befrienders are not committed to the process. Exit strategies were not addressed. Sustainable befriending relationships are dependent on commitment from both parties and transparency about the expected practices and processes from the beginning to the end of the relationship. The evidence that is available in support of befriending is mixed. To date this is the first study in relation to people with cystic fibrosis and will add to the body of knowledge of befriending in young people with a life-threatening chronic illness. © 2010 Blackwell Publishing Ltd.

Common and unique associated factors for medically unexplained chronic widespread pain and chronic fatigue☆

PubMed Central

McBeth, J.; Tomenson, B.; Chew-Graham, C.A.; Macfarlane, G.J.; Jackson, J.; Littlewood, A.; Creed, F.H.

2015-01-01

Objective Chronic widespread pain and chronic fatigue share common associated factors but these associations may be explained by the presence of concurrent depression and anxiety. Methods We mailed questionnaires to a randomly selected sample of people in the UK to identify participants with chronic widespread pain (ACR 1990 definition) and those with chronic fatigue. The questionnaire assessed sociodemographic factors, health status, healthcare use, childhood factors, adult attachment, and psychological stress including anxiety and depression. To identify persons with unexplained chronic widespread pain or unexplained chronic fatigue; we examined participant's medical records to exclude medical illness that might cause these symptoms. Results Of 1443 participants (58.0% response rate) medical records of 990 were examined. 9.4% (N = 93) had unexplained chronic widespread pain and 12.6% (N = 125) had unexplained chronic fatigue. Marital status, childhood psychological abuse, recent threatening experiences and other somatic symptoms were commonly associated with both widespread pain and fatigue. No common effect was found for few years of education and current medical illnesses (more strongly associated with chronic widespread pain) or recent illness in a close relative, neuroticism, depression and anxiety scores (more strongly associated with chronic fatigue). Putative associated factors with a common effect were associated with unexplained chronic widespread pain or unexplained chronic fatigue only when there was concurrent anxiety and/or depression. Discussion This study suggests that the associated factors for chronic widespread pain and chronic fatigue need to be studied in conjunction with concurrent depression/anxiety. Clinicians should be aware of the importance of concurrent anxiety or depression. PMID:26652592

Integration of Biosensors and Drug Delivery Technologies for Early Detection and Chronic Management of Illness

PubMed Central

Ngoepe, Mpho; Choonara, Yahya E.; Tyagi, Charu; Tomar, Lomas Kumar; du Toit, Lisa C.; Kumar, Pradeep; Ndesendo, Valence M. K.; Pillay, Viness

2013-01-01

Recent advances in biosensor design and sensing efficacy need to be amalgamated with research in responsive drug delivery systems for building superior health or illness regimes and ensuring good patient compliance. A variety of illnesses require continuous monitoring in order to have efficient illness intervention. Physicochemical changes in the body can signify the occurrence of an illness before it manifests. Even with the usage of sensors that allow diagnosis and prognosis of the illness, medical intervention still has its downfalls. Late detection of illness can reduce the efficacy of therapeutics. Furthermore, the conventional modes of treatment can cause side-effects such as tissue damage (chemotherapy and rhabdomyolysis) and induce other forms of illness (hepatotoxicity). The use of drug delivery systems enables the lowering of side-effects with subsequent improvement in patient compliance. Chronic illnesses require continuous monitoring and medical intervention for efficient treatment to be achieved. Therefore, designing a responsive system that will reciprocate to the physicochemical changes may offer superior therapeutic activity. In this respect, integration of biosensors and drug delivery is a proficient approach and requires designing an implantable system that has a closed loop system. This offers regulation of the changes by means of releasing a therapeutic agent whenever illness biomarkers prevail. Proper selection of biomarkers is vital as this is key for diagnosis and a stimulation factor for responsive drug delivery. By detecting an illness before it manifests by means of biomarkers levels, therapeutic dosing would relate to the severity of such changes. In this review various biosensors and drug delivery systems are discussed in order to assess the challenges and future perspectives of integrating biosensors and drug delivery systems for detection and management of chronic illness. PMID:23771157

Possible illnesses: assessing the health impacts of the Chad Pipeline Project.

PubMed Central

Leonard, Lori

2003-01-01

Health impact assessments associated with large-scale infrastructure projects, such as the Chad-Cameroon Petroleum Development and Pipeline Project, monitor pre-existing conditions and new diseases associated with particular industries or changes in social organization. This paper suggests that illness self-reports constitute a complementary set of benchmarks to measure the health impacts of these projects, and presents data gathered in ongoing household and health service surveys in Ngalaba, a village near a major oilfield in Chad. In an initial 16-week period of weekly data collection, 363 people reported few of the clinically chronic or asymptomatic conditions expected according to health transition theory, and the overall level of illness reporting was low. Illnesses often were described by symptoms or lay diagnoses. Health care practitioners were consulted rarely; when they were, resources for diagnosis and treatment were limited. Clinically acute, short-duration illnesses (e.g. parasitic infections, toothaches, or hernias) were experienced as chronic conditions and were reported week after week. The low levels of illness reporting and lack of clinically chronic conditions are not taken to mean that rural Chadians are healthy. Rather, the patterns of morbidity reflect a particular local ecology in which health services are organized and care dispensed in ways that limit the possibilities for illness in terms of types of illnesses that can be diagnosed and reported, forms illnesses take, and ways in which illnesses are experienced. Illness self-reports are useful adjuncts to "harder" biological measures in HIAs, particularly in the context of large-scale infrastructure projects with explicit development goals. Rather than providing data on the extent to which harm has been mitigated by corporate, state, and donor activities, self-reports show the possibilities of illness in local contexts. PMID:12894327

Physical Illness, Psychiatric Illness, and the Acceptability of Suicide.

ERIC Educational Resources Information Center

Deluty, Robert H.

1989-01-01

Assessed whether attitudes toward suicide vary as function of type of illness that precipitates suicide. College students (N=455) responded to scenarios of suicide victim. Evaluations of suicide were most favorable when it occurred in response to terminal physical illness; less favorable in response to chronic, non-terminal physical illness; and…

Living well: an intervention to improve self-management of medical illness for individuals with serious mental illness.

PubMed

Goldberg, Richard W; Dickerson, Faith; Lucksted, Alicia; Brown, Clayton H; Weber, Elyssa; Tenhula, Wendy N; Kreyenbuhl, Julie; Dixon, Lisa B

2013-01-01

Individuals with serious mental illness have elevated rates of comorbid chronic general medical conditions and may benefit from interventions designed to support illness self-management. This study examined the effectiveness of a modified version of the Chronic Disease Self-Management Program called Living Well for individuals with serious mental illness. A total of 63 mental health consumers with serious mental illness and at least one concurrent chronic general medical condition were randomly assigned to receive the 13-session peer-cofacilitated Living Well intervention or usual care. Participants were evaluated on attitudinal, behavioral, and functional outcomes at baseline, at the end of the intervention, and at a two-month follow-up. Living Well participants showed significant postintervention improvements across a range of attitudinal (self-efficacy and patient activation), behavioral (illness self-management techniques), and functional (physical and emotional well-being and general health functioning) outcomes. Although attenuation of effect was observed for most outcomes at two months postintervention, evidence was found of continued improvement in general self-management behaviors (use of action planning, brainstorming, and problem-solving). Continued advantage was found for the Living Well group in other areas, such as health-related locus of control and reports of healthy eating and physical activity. Receipt of Living Well was associated with a notable decrease in use of the emergency room for medical care, although the between-group difference was not statistically significant. Living Well shows promise in helping mental health consumers more effectively manage chronic general medical conditions and experience improved functioning and well-being.

Illness perceptions of leprosy-cured individuals in Surinam with residual disfigurements - "I am cured, but still I am ill".

PubMed

van Haaren, Mark Ac; Reyme, Melinda; Lawrence, Maggie; Menke, Jack; Kaptein, Ad A

2017-06-01

Objective Leprosy has rarely been the subject of health psychology research despite its substantial impact. Our aim was to explore illness perceptions in patients and their health care providers in Surinam. The Common Sense Model (CSM) was the guiding theoretical model. Design Patients with biomedically cured leprosy and their health care providers completed the B-IPQ and took part in semi-structured interviews. The literature on illness perceptions in patients with leprosy was reviewed. Main outcome measures Patients' B-IPQ scores were compared with samples of patients with other (chronic) illnesses, and with health care providers completing the questionnaire as if they were visibly disfigured patients. Quotations from the semi-structured interviews were used to contextualise the illness perceptions. Results Patients' B-IPQ scores reflected the chronic nature of leprosy and were comparable with those with other chronic illnesses. Health care providers perceived leprosy to have a greater negative impact than did the patients. Perceived understanding of causes differed considerably between patients and health care providers. Conclusion Leprosy continues to be experienced as an illness with major psychological and social consequences such as stigmatisation, even after biomedical cure. Interventions that target patients, health care providers, and society at large may help reduce perceived shame and stigma. The CSM is a helpful theoretical model in studying this population.

Coping with Chronic Illness in Childhood and Adolescence

PubMed Central

Compas, Bruce E.; Jaser, Sarah S.; Dunn, Madeleine J.; Rodriguez, Erin M.

2012-01-01

Chronic illnesses and medical conditions present millions of children and adolescents with significant stress that is associated with risk for emotional and behavioral problems and interferes with adherence to treatment regimens. We review research on the role of child and adolescent coping with stress as an important feature of the process of adaptation to illness. Recent findings support a control-based model of coping that includes primary control or active coping (efforts to act on the source of stress or one’s emotions), secondary control or accommodative coping (efforts to adapt to the source of stress), and disengagement or passive coping (efforts to avoid or deny the stressor). Evidence suggests the efficacy of secondary control coping in successful adaptation to chronic illness in children and adolescents, disengagement coping is associated with poorer adjustment, and findings for primary control coping are mixed. Avenues for future research are highlighted. PMID:22224836

Discontinuing treatment in children with chronic, critical illnesses.

PubMed

Mahon, M M; Deatrick, J A; McKnight, H J; Mohr, W K

2000-03-01

Decisions about optimal treatment for critically ill children are qualitatively different from those related to adults. Technological advances over the past several decades have resulted in myriad treatment options that leave many children chronically, critically ill. These children are often technology dependent. With new technologies and new patient populations comes the responsibility to understand how, when, and why these technologies are applied and when technology should not be used or should be withdrawn. Much has been written about ethical decision making in the care of chronically, critically ill adults and newborns. In this article, relevant factors about the care of children older than neonates are described: standards, decision makers, age of the child, and pain management. A case study is used as a mechanism to explore these issues. Dimensions of futility, discontinuing aggressive treatment, and a consideration of benefits and burdens are integrated throughout the discussion to inform nurse practitioner practice.

[Disease management programs from a health insurer's point of view].

PubMed

Szymkowiak, Christof; Walkenhorst, Karen; Straub, Christoph

2003-06-01

Disease Management Programmes represent a great challenge to the German statutory health insurance system. According to politicians, disease management programmes are an appropriate tool for increasing the level of care for chronically ill patients significantly, while at the same time they can slow down the cost explosion in health care. The statutory health insurers' point of view yields a more refined picture of the chances and risks involved. The chances are that a medical guideline-based, evidence-based, co-operative care of the chronically ill could be established. But also, there are the risks of misuse of disease management programmes and of misallocation of funds due to the ill-advised linkage with the so-called risk compensation scheme (RSA) balancing the sickness funds' structural deficits through redistribution. The nation-wide introduction of disease management programmes appears to be a gigantic experiment whose aim is to change the care of chronically ill patients and whose outcome is unpredictable.

Collaborative Help in Chronic Disease Management: Supporting Individualized Problems

PubMed Central

Huh, Jina; Ackerman, Mark S.

2013-01-01

Coping with chronic illness disease is a long and lonely journey, because the burden of managing the illness on a daily basis is placed upon the patients themselves. In this paper, we present our findings for how diabetes patient support groups help one another find individualized strategies for managing diabetes. Through field observations of face-to-face diabetes support groups, content analysis of an online diabetes community, and interviews, we found several help interactions that are critical in helping patients in finding individualized solutions. Those are: (1) patients operationalize their experiences to easily contextualize and share executable strategies; (2) operationalization has to be done within the larger context of sharing illness trajectories; and (3) the support groups develop common understanding towards diabetes management. We further discuss how our findings translate into design implications for supporting chronic illness patients in online community settings. PMID:25360442

Understanding Children with Asthma: Trouble and Triggers

ERIC Educational Resources Information Center

Lim, JungHa; Wood, Beatrice L.; Cheah, PoAnn

2009-01-01

Asthma is one of the most common illnesses of childhood; in the United States, nearly 9% of children have the condition (Federal Interagency Forum on Child and Family Statistics, 2006). Among children with chronic illnesses, asthma is the most common cause for school absence and hospitalization (Akinbami, 2006). Asthma is a chronic disorder of the…

Providing Effective Early Intervention Vocational Rehabilitation at the Community Level

ERIC Educational Resources Information Center

Allaire, Saralynn J.; Niu, Jingbo; Zhu, Yanyan; Brett, Belle

2011-01-01

The purpose of this study was to evaluate the translation of positive research findings about a job retention intervention for persons with chronic illnesses to rehabilitation practice. A program to provide the intervention was developed and marketed in the community. Fifty-seven consumers with chronic illnesses received the intervention provided…

Home Care for Children with Chronic Illnesses and Severe Disabilities: A Bibliography and Resource Guide.

ERIC Educational Resources Information Center

Wells, Alice; And Others

The bibliography and resource guide summarizes relevant research and information on home care for children with disabilities and chronic illnesses, including those with such diagnoses as spina bifida, cerebral palsy, severe mental retardation, acquired immune deficiency syndrome (AIDS), hemophilia, sickle cell anemia, autism, or failure-to-thrive…

Sports and Athletics: Issues for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This annotated bibliography focuses on issues in sports and athletics for adolescents and young adults with chronic illnesses and disabilities. The listings are drawn from the National Resource Library of the National Center for Youth with Disabilities, which includes journals, books, and non-published materials. The section on bibliographic…

Adolescents with Chronic Illnesses--Issues for School Personnel. Second Edition. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This resource guide covers the psychosocial and health concerns of adolescents with chronic illnesses. In a section titled "Bibliographic Information," the guide describes 12 books on general medical and social aspects, three resources on demographics, four resources on school issues, and 14 resources on psychosocial and family issues. A section…

Financing Options for Home Care for Children with Chronic Illness and Severe Disability. Technical Assistance Manual.

ERIC Educational Resources Information Center

Ellison, Marsha Langer; And Others

This manual is intended to accompany technical assistance efforts aimed at improving selected states' home health care programs for children with chronic illness and severe disability. Summary descriptions of funding sources are presented, including purpose, eligibility guidelines, and services covered, as well as additional information as…

Expanding Transition to Address the Needs of Students with Invisible Chronic Illness

ERIC Educational Resources Information Center

Repetto, Jeanne B.; Horky, Susan Chauncey; Miney, Angela; Reiss, John; Saidi, Arwa; Wolcott, Lisa; Saldana, Pablo; Jaress, Jennifer M.

2012-01-01

Many children with invisible chronic illnesses (ICIs) are living to adulthood, necessitating that they prepare for their future. Health care and education systems have different meanings and processes for transition, although both systems are designed to help young adults prepare for independence. As health care and educational services support…

School Psychologists' Role Concerning Children with Chronic Illnesses in Schools

ERIC Educational Resources Information Center

Barraclough, Camille; Machek, Greg

2010-01-01

The authors examined the role of school psychologists in working with children with chronic illnesses in the schools. A total of 300 practicing school psychologists in public schools, drawn from the National Association of School Psychologists membership directory, completed a standard mail survey. The survey solicited information on (a) graduate…

Protective Connections and Educational Attainment among Young Adults with Childhood-Onset Chronic Illness

ERIC Educational Resources Information Center

Maslow, Gary; Haydon, Abigail A.; McRee, Annie-Laurie; Halpern, Carolyn T.

2012-01-01

Background: Youth with childhood-onset chronic illness (COCI) are at risk of poor educational attainment. Specific protective factors that promote college graduation in this population have not been studied previously. In this study, we examine the role protective factors during adolescence play in promoting college graduation among young adults…

Issues in Nutrition for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This annotated bibliography lists print materials, training and educational materials, and programs concerned with nutrition for youth with chronic illnesses and disabilities. Basic bibliographic information and a brief abstract are provided for each of the 87 bibliographic citations which date from 1980 through 1991. Citations are organized into…

Supporting the Learning of Children with Chronic Illness

ERIC Educational Resources Information Center

A'Bear, David

2014-01-01

This qualitative study explores the challenges that chronically ill students face in their learning as a result of prolonged and intermittent absences from school. It shows how the use of iPod technology as a communicative link minimized the impact of absences and allowed the student to experience true inclusion in their classroom, enabling the…

Race and Ethnicity: Issues for Adolescents with Chronic Illnesses and Disabilities. Cydline Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This abstract bibliography lists selected resources for addressing race and ethnicity issues with adolescents who have chronic illnesses and disabilities. References are dated from 1980 to 1991. First, 18 references provide general information about the issues of cultural competence and cultural diversity for health care professionals, educators,…

Developing Social Skills: Issues for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This collection of annotated bibliographies focuses on the social skills of adolescents, and is drawn from a national database of current programs and literature regarding adolescents with chronic illnesses and other disabilities. Bibliographic materials listed include documents and articles selected from the database of the National Center for…

Self-Esteem: Issues for Adolescents with Chronic Illnesses and Disabilities. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This annotated bibliography focuses on issues of self-esteem in adolescents with disabilities, which is seen as closely related to development of critical social skills. References have been drawn from the National Center for Youth with Disabilities' National Resource Library, a database about youth with chronic illnesses and disabilities. The…

Rehabilitation Counselor Preparation to Work with LGBTQ Persons Living with Chronic Illness/Disability: A Qualitative Content Analysis

ERIC Educational Resources Information Center

Dispenza, Franco; Elston, Nikki C.; Huffstead, Mary E.; Suttles, Mackenzie G.; Golubovic, Nedeljko

2017-01-01

Purpose: To identify meaningful educative experiences that contributed to the development of rehabilitation counselors' abilities to provide effective rehabilitation counseling services to lesbian, gay, bisexual, transgender, and queer (LGBTQ) persons living with chronic illness/disabilities (CID). Method: This was a secondary analysis of a larger…

Legal Issues for Adolescents with Chronic Illnesses and Disabilities and Their Families. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This collection of annotated bibliographies focuses on a broad spectrum of legal issues, and is drawn from a national database of current programs and literature regarding adolescents with chronic illnesses and other disabilities. Bibliographic materials listed include documents and articles concerning the following: consent and confidentiality…

Physical health indicators in major mental illness: data from the Quality and Outcome Framework in the UK.

PubMed

Martin, Julie Langan; Lowrie, Richard; McConnachie, Alex; McLean, Gary; Mair, Frances; Mercer, Stewart; Smith, Daniel

2015-02-26

In the UK, the Quality and Outcome Framework (QOF) has specific targets for general practictioners to record body-mass index (BMI) and blood pressure (BP) in major mental illness, diabetes, and chronic kidney disease. Although incentives are given for aspects of major mental illness (schizophrenia, bipolar disorder, and related psychoses), barriers to care can occur. Our aim was to compare recording of specific targets for BP and BMI in individuals with major mental illness relative to diabetes and chronic kidney disease across the UK. Using 2012 and 2013 QOF data from 9731 general practices across all four countries in the UK, we calculated median payment, population achievement, and exception rates for BP indicators in major mental illness and chronic kidney disease and BMI indicators in major mental illness and diabetes. Differences in unweighted rates between practices in the same UK country were tested with a sign test. Differences in population achievement rate between practices in different countries were compared with those in England by use of a quantile regression analysis. UK payment and population achievement rates for BMI recording in major mental illness were significantly lower than were those in diabetes (payment 92·7% vs 95·5% and population achievement 84·0% vs 92·5%, p<0·0001) and exception rates were higher (8·1% vs 2·0%, p<0·0001). For BP recording, UK payment and population achievement rates were significantly lower for major mental illness than for chronic kidney disease (94·1% vs 97·8% and 87·0% vs 97·1%, p<0·0001), whereas exception rate was higher (6·5% vs 0·0%, p<0·0001). This difference was observed for all UK countries. Median population achievement rates for BMI and BP recording in major mental illness were significantly lower in Scotland than in England (for BMI -1·5%, 99% CI -2·7 to -0·3, and for BP -1·8%, -2·7 to -0·9; p<0·0001 for both). There were no cross-jurisdiction differences for chronic kidney disease and diabetes. We found lower payment rates, higher exception rates, and lower population achievement rates for BMI and BP recording in major mental illness than in diabetes and chronic kidney disease throughout the UK. We also found variation in these rates between countries. This finding is probably multifactorial, reflecting a combination of patient, clinician, and wider organisational factors; however, it might also suggest inequality in access to certain aspects of health care for people with major mental illness. None. Copyright © 2015 Elsevier Ltd. All rights reserved.

Family functioning in families of first-episode psychosis patients as compared to chronic mentally ill patients and healthy controls.

PubMed

Koutra, Katerina; Triliva, Sofia; Roumeliotaki, Theano; Stefanakis, Zacharias; Basta, Maria; Lionis, Christos; Vgontzas, Alexandros N

2014-11-30

The present study aimed to investigate possible differences in family environment among patients experiencing their First Episode of Psychosis (FEP), chronic patients and controls. Family cohesion and flexibility (FACES-IV) and psychological distress (GHQ-28) were evaluated in families of 50 FEP and 50 chronic patients, as well as 50 controls, whereas expressed emotion (FQ) and family burden (FBS) were assessed in families of FEP and chronic patients. Multivariable linear regression analysis, adjusted for confounders, indicated impaired cohesion and flexibility for families of FEP patients compared to controls, and lower scores for families of chronic patients compared to those of FEP patients. Caregivers of chronic patients scored significantly higher in criticism, and reported higher burden and psychological distress than those of FEP patients. Our findings suggest that unbalanced levels of cohesion and flexibility, high criticism and burden appeared to be the outcome of psychosis and not risk factors triggering the onset of the illness. Furthermore, emotional over-involvement both in terms of positive (i.e. concern) and negative behaviors (i.e. overprotection) is prevalent in Greek families. Psychoeducational interventions from the early stages of the illness should be considered to promote caregivers' awareness regarding the patients' illness, which in turn, may ameliorate dysfunctional family interactions. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

Current and Potential Support for Chronic Disease Management in the United States: The Perspective of Family and Friends of Chronically Ill Adults

PubMed Central

Rosland, Ann-Marie; Heisler, Michele; Janevic, Mary; Connell, Cathleen; Langa, Kenneth M.; Kerr, Eve A.; Piette, John D.

2013-01-01

Objectives Family members and friends can be an important source of self-management support for older adults with chronic diseases. We characterized the U.S. population of potential and current “disease management supporters” for people with chronic illness who are ADL-independent, the help that supporters could provide, and barriers to increasing support. Methods Nationally-representative survey of U.S. adults (N=1,722). Results 44% of respondents (representing 100 million US adults) help a family member or friend with chronic disease management; another 9% (representing 21 million US adults) are willing to start. Most are willing to assist with key tasks such as medication use and communicating with providers, although they feel constrained by privacy concerns and a lack of patient health information. Discussion The majority of U.S. adults already help or would be willing to help one of their family members or friends with chronic illness care. Supporters' specific concerns could be addressed through innovative programs. PMID:23795624

Factors affecting vocational outcomes of people with chronic illness participating in a supported competitive open employment program in Hong Kong.

PubMed

Lee, Rosalia K Y; Chan, Chetwyn C H

2005-01-01

This study aimed to analyze the ability of the Patient Retraining and Vocational Resettlement (PRAVR) program to enhance the vocational outcomes of individuals with chronic illness, and to study the socio-demographic factors associated with successful vocational outcome. A retrospective study of 548 individuals with various types of chronic illness who enrolled in the program between 1995 and 2003. Their socio-demographic data and their employment outcome after a six-month job skills retraining and job settlement service were collected for analysis. The program was found to enhance the vocational outcomes of patients who completed the program. Logistic regression identified significant factors predicting successful vocational outcomes. For the male patients, the chances of employment were higher if the onset of illness had occurred at least 10 years before (odd ratios = 0.326). For the female patients, the chances of employment were higher if they had been unemployed for less than 1 year (odd ratio = 3.8). The PRAVR program is able to enhance the vocational outcomes of people with chronic illness in Hong Kong. The factors which were found to relate to successful employment were unique to the local situation. Further studies should explore these factors in a more in-depth manner.

Best candidates for cognitive treatment of illness perceptions in chronic low back pain: results of a theory-driven predictor study.

PubMed

Siemonsma, Petra C; Stuvie, Ilse; Roorda, Leo D; Vollebregt, Joke A; Lankhorst, Gustaaf J; Lettinga, Ant T

2011-04-01

The aim of this study was to identify treatment-specific predictors of the effectiveness of a method of evidence-based treatment: cognitive treatment of illness perceptions. This study focuses on what treatment works for whom, whereas most prognostic studies focusing on chronic non-specific low back pain rehabilitation aim to reduce the heterogeneity of the population of patients who are suitable for rehabilitation treatment in general. Three treatment-specific predictors were studied in patients with chronic non-specific low back pain receiving cognitive treatment of illness perceptions: a rational approach to problem-solving, discussion skills and verbal skills. Hierarchical linear regression analysis was used to assess their predictive value. Short-term changes in physical activity, measured with the Patient-Specific Functioning List, were the outcome measure for cognitive treatment of illness perceptions effect. A total of 156 patients with chronic non-specific low back pain participated in the study. Rational problem-solving was found to be a significant predictor for the change in physical activity. Discussion skills and verbal skills were non-significant. Rational problem-solving explained 3.9% of the total variance. The rational problem-solving scale results are encouraging, because chronic non-specific low back pain problems are complex by nature and can be influenced by a variety of factors. A minimum score of 44 points on the rational problem-solving scale may assist clinicians in selecting the most appropriate candidates for cognitive treatment of illness perceptions.

Understanding depression associated with chronic physical illness: a Q-methodology study in primary care

PubMed Central

Alderson, Sarah L; Foy, Robbie; House, Allan

2015-01-01

Background Detection of depression can be difficult in primary care, particularly when associated with chronic illness. Patient beliefs may affect detection and subsequent engagement with management. Q-methodology can help to identify viewpoints that are likely to influence either clinical practice or policy intervention. Aim To identify socially shared viewpoints of comorbid depression, and characterise key overlaps and discrepancies. Design and setting A Q-methodology study of patients registered with general practices or community clinics in Leeds, UK. Method Patients with coronary heart disease or diabetes and depression from three practices and community clinics were invited to participate. Participants ranked 57 statements about comorbid depression. Factor analyses were undertaken to identify independent accounts, and additional interview data were used to support interpretation. Results Thirty-one patients participated; 13 (42%) had current symptoms of depression. Five accounts towards comorbid depression were identified: overwhelmed resources; something medical or within me; a shameful weakness; part of who I am; and recovery-orientated. The main differences in attitudes related to the cause of depression and its relationship with the patient’s chronic illness, experience of shame, and whether medical interventions would help recovery. Conclusion There are groups of patients who do not perceive a relationship between their depression and chronic illness; they may not understand the intention behind policy initiatives to identify depression during chronic illness reviews. Tailoring detection strategies for depression to take account of different clusters of attitudes and beliefs could help improve identification and personalise management. PMID:26009535

Health Self-Efficacy Among Populations with Multiple Chronic Conditions: the Value of Patient-Centered Communication.

PubMed

Finney Rutten, Lila J; Hesse, Bradford W; St Sauver, Jennifer L; Wilson, Patrick; Chawla, Neetu; Hartigan, Danielle B; Moser, Richard P; Taplin, Stephen; Glasgow, Russell; Arora, Neeraj K

2016-08-01

Using cross-sectional survey data, we assessed the association between chronic illness burden and health-related self-efficacy, evaluating whether patient-centered communication is associated with self-efficacy and if that relationship varies by chronic illness burden. Data were from the Health Information National Trends Survey, a cross-sectional survey of the US adult population collected in 2012-2013 (n = 3630). Health-related self-efficacy was measured with the item: "Overall, how confident are you about your ability to take good care of your health?" and the prevalence of six chronic conditions and depression/anxiety was assessed. Patient-centered communication was measured as the frequency with which respondents perceived their healthcare providers allowed them to ask questions, gave attention to their emotions, involved them in decisions, made sure they understood how to take care of their health, helped them to deal with uncertainty, and if they felt they could rely on their healthcare providers to take care of their healthcare needs. Health-related self-efficacy was significantly lower among individuals with greater illness burden. In adjusted analysis, individuals who experienced more positive patient-centered communication reported higher levels of self-efficacy (β = 0.26, P < 0.0001); this association was strongest among those with greater illness burden. Higher levels of self-efficacy were observed among patients reporting more positive patient-centered communication; the observed association was stronger among those with greater chronic illness burden.

Issues concerning the on-going care of patients with comorbidities in acute care and post-discharge in Australia: a literature review.

PubMed

Williams, Allison; Botti, Mari

2002-10-01

Advances in medical science and improved lifestyles have reduced mortality rates in Australia and most western countries. This has resulted in an ageing population with a concomitant growth in the number of people who are living with chronic illnesses. Indeed a significant number of younger people experience more than one chronic illness. Large numbers of these may require repeated admissions to hospital for acute or episodic care that is superimposed upon the needs of their chronic conditions. To explore the issues that circumscribe the complexities of caring for people with concurrent chronic illnesses, or comorbidities, in the acute care setting and postdischarge. A literature review to examine the issues that impact upon the provision of comprehensive care to patients with comorbidities in the acute care setting and postdischarge. Few studies have investigated this subject. From an Australian perspective, it is evident that the structure of the current health care environment has made it difficult to meet the needs of patients with comorbidities in the acute care setting and postdischarge. This is of major concern for nurses attempting to provide comprehensive care to an increasingly prevalent group of chronically ill people. Further research is necessary to explore how episodic care is integrated into the on-going management of patients with comorbidities and how nurse clinicians can better use an episode of acute illness as an opportunity to review their overall management.

Gamifying Self-Management of Chronic Illnesses: A Mixed-Methods Study

PubMed Central

Wills, Gary; Ranchhod, Ashok

2016-01-01

Background Self-management of chronic illnesses is an ongoing issue in health care research. Gamification is a concept that arose in the field of computer science and has been borrowed by many other disciplines. It is perceived by many that gamification can improve the self-management experience of people with chronic illnesses. This paper discusses the validation of a framework (called The Wheel of Sukr) that was introduced to achieve this goal. Objective This research aims to (1) discuss a gamification framework targeting the self-management of chronic illnesses and (2) validate the framework by diabetic patients, medical professionals, and game experts. Methods A mixed-method approach was used to validate the framework. Expert interviews (N=8) were conducted in order to validate the themes of the framework. Additionally, diabetic participants completed a questionnaire (N=42) in order to measure their attitudes toward the themes of the framework. Results The results provide a validation of the framework. This indicates that gamification might improve the self-management of chronic illnesses, such as diabetes. Namely, the eight themes in the Wheel of Sukr (fun, esteem, socializing, self-management, self-representation, motivation, growth, sustainability) were perceived positively by 71% (30/42) of the participants with P value <.001. Conclusions In this research, both the interviews and the questionnaire yielded positive results that validate the framework (The Wheel of Sukr). Generally, this study indicates an overall acceptance of the notion of gamification in the self-management of diabetes. PMID:27612632

[The transition process from paediatric to adult services: A perspective from hospitalised adolescent sufferers of chronic diseases].

PubMed

Inostroza Quezada, Carolina; Correa Venegas, María Loreto; Besoain Arrau, Carolina; Reinoso Medinelli, Alejandro; Velarde Lizama, Macarena; Valenzuela Mujica, María Teresa; Bedregal García, Paula; Zubarew Gurtchin, Tamara

2016-01-01

Chronic illnesses during adolescence are a big challenge for the patient, his or her family, and health care providers. The transition from paediatric health services to adult health services involves a programmed and planned transfer process of adolescent sufferers of chronic illnesses, in order to maintain a high quality of life and bio-psycho-social development. There is currently no transition model. The objective of the study is to understand the transition process from the perspective of hospitalised adolescents to collaborate towards the design of a model that meets the needs studied. Semi-structured interviews with 13 adolescent sufferers of chronic illnesses, hospitalised in two healthcare centres in Santiago, Chile, in one analytical-relational study, supported by qualitative methodology. In the analysis, 5 major themes stand out: experience of living with the illness, the importance of the doctor-patient relationship, the concept of limited autonomy to the pharmacology, the absence of the transition process as such, and the identification of barriers and needs for an adequate transition. This study is new in Chile in that it explores the phenomenom of the transition of adolescents with chronic illnesses. It emphasises the need to reinforce the concept of self-care and autonomy from early stages of care, and the importance of early planning of a healthy transition process, in accordance to the detected needs of the adolescents themselves. Copyright © 2015. Publicado por Elsevier España, S.L.U.

Gamifying Self-Management of Chronic Illnesses: A Mixed-Methods Study.

PubMed

AlMarshedi, Alaa; Wills, Gary; Ranchhod, Ashok

2016-09-09

Self-management of chronic illnesses is an ongoing issue in health care research. Gamification is a concept that arose in the field of computer science and has been borrowed by many other disciplines. It is perceived by many that gamification can improve the self-management experience of people with chronic illnesses. This paper discusses the validation of a framework (called The Wheel of Sukr) that was introduced to achieve this goal. This research aims to (1) discuss a gamification framework targeting the self-management of chronic illnesses and (2) validate the framework by diabetic patients, medical professionals, and game experts. A mixed-method approach was used to validate the framework. Expert interviews (N=8) were conducted in order to validate the themes of the framework. Additionally, diabetic participants completed a questionnaire (N=42) in order to measure their attitudes toward the themes of the framework. The results provide a validation of the framework. This indicates that gamification might improve the self-management of chronic illnesses, such as diabetes. Namely, the eight themes in the Wheel of Sukr (fun, esteem, socializing, self-management, self-representation, motivation, growth, sustainability) were perceived positively by 71% (30/42) of the participants with P value <.001. In this research, both the interviews and the questionnaire yielded positive results that validate the framework (The Wheel of Sukr). Generally, this study indicates an overall acceptance of the notion of gamification in the self-management of diabetes.

School Experiences of Siblings of Children with Chronic Illness: A Systematic Literature Review.

PubMed

Gan, Lucy L; Lum, Alistair; Wakefield, Claire E; Nandakumar, Beeshman; Fardell, Joanna E

Siblings of children with chronic illness have unique experiences that can affect their school functioning, such that they may miss ongoing periods of school, experience difficulties with schoolwork or experience changes in their peer and teacher interactions. This review provides an overview of these siblings' school experiences. Six databases (Medline, PsychINFO, CINAHL, ERIC, Embase and The Cochrane Library) were systematically searched for studies examining the school experiences and peer relationships of siblings of children with chronic illness, as well as school-based interventions for these siblings. Studies were included if they were published in or after 2000 and were published in English. We identified 2137 articles upon initial search. From these, we identified 28 eligible studies examining the school experiences of >1470 siblings of children with chronic illness. Three key themes were identified throughout the reviewed articles. The literature described 1) the psychological impact on siblings at school; 2) decreases in school attendance and academic functioning, and; 3) changes or perceived differences in peer and teacher interactions. Siblings value teacher and peer support, and this support may contribute to better sibling school functioning. Many siblings are socially resilient, yet overlooked, members of the family who may present with psychological, academic and peer related difficulties at school following diagnosis of a brother or sister with chronic illness. Future research is needed to further delineate the sibling school experience to better facilitate the development of targeted sibling support interventions within the school environment. Copyright © 2016 Elsevier Inc. All rights reserved.

Perceived Exercise Self-Efficacy, Benefits and Barriers, and Commitment to a Plan for Exercise among Jordanians with Chronic Illnesses.

PubMed

Darawad, Muhammad W; Khalil, Amani A; Hamdan-Mansour, Ayman M; Nofal, Basema M

2016-11-01

To explore Jordanian chronic illnesses patients' perceived exercise self-efficacy, benefits and barriers, and commitment to exercise planning, and to assess the relationship between those variables. Descriptive cross-sectional design. Data were collected from a convenience sample of 402 outpatient Jordanians with chronic illnesses, using Exercise Self-Efficacy Scale, Exercise Benefits and Barriers Scale, and Commitment to a Plan for Exercise Scale. The average BMI was 28.3, and exercise period 3.2 hours/ week. Participants reported moderate perceived self-efficacy (M= 47.5%, SD= 11.7), commitment to exercise planning (M=2.0/3, SD=0.3), exercise barriers (M=2.4/4, SD=0.3), and benefits (M=2.3/4, SD=0.3). Commitment to exercise planning had a significant correlation with barriers (r=0.11) and benefits (r=0.10). Self-efficacy was not found to correlate with other variables. Even though participants reported higher perceived self-efficacy and commitment to exercise plan than that reported in literature, they were found to be overweight and inactive, which indicates the importance of such study. Exercise education programs are needed taking into considerations patients' individual differences. However, the broad grouping of diseases may not produce a homogenous sample, for which disease categories are recommended in future studies. Patients with chronic illness need more encouragement to engage themselves in exercise practices. Exercise educational program for patients with chronic illnesses should consider patients' reported exercise benefits and barriers. © 2014 Association of Rehabilitation Nurses.

Measurement of Chronic Pain and Opioid Use Evaluation in Community-Based Persons with Serious Illnesses

PubMed Central

Naidu, Ramana K.

2018-01-01

Abstract Background: Chronic pain associated with serious illnesses is having a major impact on population health in the United States. Accountability for high quality care for community-dwelling patients with serious illnesses requires selection of metrics that capture the burden of chronic pain whose treatment may be enhanced or complicated by opioid use. Objective: Our aim was to evaluate options for assessing pain in seriously ill community dwelling adults, to discuss the use/abuse of opioids in individuals with chronic pain, and to suggest pain and opioid use metrics that can be considered for screening and evaluation of patient responses and quality care. Design: Structured literature review. Measurements: Evaluation of pain and opioid use assessment metrics and measures for their potential usefulness in the community. Results: Several pain and opioid assessment instruments are available for consideration. Yet, no one pain instrument has been identified as “the best” to assess pain in seriously ill community-dwelling patients. Screening tools exist that are specific to the assessment of risk in opioid management. Opioid screening can assess risk based on substance use history, general risk taking, and reward-seeking behavior. Conclusions: Accountability for high quality care for community-dwelling patients requires selection of metrics that will capture the burden of chronic pain and beneficial use or misuse of opioids. Future research is warranted to identify, modify, or develop instruments that contain important metrics, demonstrate a balance between sensitivity and specificity, and address patient preferences and quality outcomes. PMID:29091525

Training Load and Fatigue Marker Associations with Injury and Illness: A Systematic Review of Longitudinal Studies.

PubMed

Jones, Christopher M; Griffiths, Peter C; Mellalieu, Stephen D

2017-05-01

Coaches, sport scientists, clinicians and medical personnel face a constant challenge to prescribe sufficient training load to produce training adaption while minimising fatigue, performance inhibition and risk of injury/illness. The aim of this review was to investigate the relationship between injury and illness and longitudinal training load and fatigue markers in sporting populations. Systematic searches of the Web of Science and PubMed online databases to August 2015 were conducted for articles reporting relationships between training load/fatigue measures and injury/illness in athlete populations. From the initial 5943 articles identified, 2863 duplicates were removed, followed by a further 2833 articles from title and abstract selection. Manual searching of the reference lists of the remaining 247 articles, together with use of the Google Scholar 'cited by' tool, yielded 205 extra articles deemed worthy of assessment. Sixty-eight studies were subsequently selected for inclusion in this study, of which 45 investigated injury only, 17 investigated illness only, and 6 investigated both injury and illness. This systematic review highlighted a number of key findings, including disparity within the literature regarding the use of various terminologies such as training load, fatigue, injury and illness. Athletes are at an increased risk of injury/illness at key stages in their training and competition, including periods of training load intensification and periods of accumulated training loads. Further investigation of individual athlete characteristics is required due to their impact on internal training load and, therefore, susceptibility to injury/illness.

Development and Validation of a Printed Information Brochure for Families of Chronically Critically Ill Patients

PubMed Central

Carson, Shannon S.; Vu, Maihan; Danis, Marion; Camhi, Sharon L.; Scheunemann, Leslie P.; Cox, Christopher E.; Hanson, Laura C.; Nelson, Judith E.

2012-01-01

Objective Families and other surrogate decision-makers for chronically critically ill patients often lack information about patient prognosis or options for care. This study describes an approach to develop and validate a printed information brochure about chronic critical illness aimed at improving comprehension of the disease process and outcomes for patients’ families and other surrogate decision-makers. Design Investigators reviewed existing literature to identify key domains of informational needs. Content of these domains was incorporated in a draft brochure that included graphics and a glossary of terms. Clinical sensibility, balance, and emotional sensitivity of the draft brochure were tested in a series of evaluations by cohorts of experienced clinicians (n=49) and clinical content experts (n=8), with revisions after each review. Cognitive testing of the brochure was performed through interviews of 10 representative family members of chronically critically ill patients with quantitative and qualitative analysis of responses. Measurements and Main Results Clinical sensibility and balance were rated in the two most favorable categories on a 5-point scale by more than two thirds of clinicians and content experts. After review, family members described the brochure as clear and readable and recommended that the brochure be delivered to family members by clinicians, followed by a discussion of its contents. They indicated that the glossary was useful and recommended supplementation by additional lists of local resources. After reading the brochure, their prognostic estimates became more consistent with actual outcomes. Conclusions We have developed and validated a printed information brochure that may improve family comprehension of chronic critical illness and its outcomes. The structured process that is described can serve as a template for the development of other information aids for use with seriously ill populations. PMID:21926610

Implementation and effectiveness of 'care navigation', coordinated management for people with complex chronic illness: rationale and methods of a randomised controlled trial.

PubMed

Plant, Natalie; Mallitt, Kylie-Ann; Kelly, Patrick J; Usherwood, Tim; Gillespie, James; Boyages, Steven; Jan, Stephen; McNab, Justin; Essue, Beverley M; Gradidge, Kathy; Maranan, Nereus; Ralphs, David; Aspin, Clive; Leeder, Stephen

2013-05-03

Chronic illness is a significant driver of the global burden of disease and associated health care costs. People living with severe chronic illness are heavy users of acute hospital services; better coordination of their care could potentially improve health outcomes while reducing hospital use. The Care Navigation trial will evaluate an in-hospital coordinated care intervention on health service use and quality of life in chronically ill patients. A randomised controlled trial in 500 chronically ill patients presenting to the emergency department of a hospital in Western Sydney, Australia. Participants have three or more hospital admissions within a previous 12 month period and either aged ≥70 years; or aged ≥45 years and of Aboriginal or Torres Strait Islander descent; or aged ≥ 16 with a diagnosis of a respiratory or cardiology related illness. Patients are randomised to either the coordinated care program (Care Navigation), or to usual care. The Care Navigation program consists of dedicated nurses who conduct patient risk assessments, oversee patient nursing while in hospital, and guide development of a care plan for the management of chronic illness after being discharged from hospital. These nurses also book community appointments and liaise with general practitioners. The main outcome variables are the number of emergency department re-presentations and hospital readmissions, and quality of life during a 24 month follow-up. Secondary outcomes are length of hospital stay, mortality, time to first hospital re-admission, time to first emergency department re-presentation, patient satisfaction, adherence to prescribed medications, amount and type of in-hospital referrals made for consultations and diagnostic testing, and the number and type of community health referrals. A process evaluation and economic analysis will be conducted alongside the randomised trial. A trial of in-hospital care coordination may support recent evidence that engaging primary health services in care plans linked to multidisciplinary team support improves patient outcomes and reduces costs to the health system. This will inform local, national and international health policy. Australia New Zealand Clinical Trials Registry ACTRN12609000554268.

Cognitive deficits in recent-onset and chronic schizophrenia☆

PubMed Central

Sponheim, S.R.; Jung, R.E.; Seidman, L.J.; Mesholam-Gately, R.I.; Manoach, D.S.; O'Leary, D.S.; Ho, B.C.; Andreasen, N.C.; Lauriello, J.; Schulz, S.C.

2014-01-01

Although cognitive dysfunction is a primary characteristic of schizophrenia, only recently have investigations begun to pinpoint when the dysfunction develops in the individual afflicted by the disorder. Research to date provides evidence for significant cognitive impairments prior to disorder onset. Less is known about the course of cognitive dysfunction from onset to the chronic phase of schizophrenia. Although longitudinal studies are optimal for assessing stability of cognitive deficits, practice effects often confound assessments, and large and representative subject samples have not been followed over long periods of time. We report results of a cross-sectional study of cognitive deficits early and late in the course of schizophrenia carried out at four different geographic locations to increase sample size and generalizability of findings. We examined a broad set of cognitive functions in 41 recent-onset schizophrenia patients and 106 chronic schizophrenia patients. The study included separate groups of 43 matched controls for the recent-onset sample and 105 matched controls for the chronic schizophrenia sample in order to evaluate the effects of cohort (i.e., age) and diagnosis (i.e., schizophrenia) on cognitive functions. All measures of cognitive function showed effects of diagnosis; however, select time-based measures of problem solving and fine motor dexterity exhibited interactions of diagnosis and cohort indicating that these deficits may progress beyond what is expected with normal aging. Also, worse recall of material in episodic memory was associated with greater length of illness. Nevertheless, findings indicate that nearly all cognitive deficits are comparably impaired across recent-onset and chronic schizophrenia. PMID:19878956

Cognitive deficits in recent-onset and chronic schizophrenia.

PubMed

Sponheim, S R; Jung, R E; Seidman, L J; Mesholam-Gately, R I; Manoach, D S; O'Leary, D S; Ho, B C; Andreasen, N C; Lauriello, J; Schulz, S C

2010-05-01

Although cognitive dysfunction is a primary characteristic of schizophrenia, only recently have investigations begun to pinpoint when the dysfunction develops in the individual afflicted by the disorder. Research to date provides evidence for significant cognitive impairments prior to disorder onset. Less is known about the course of cognitive dysfunction from onset to the chronic phase of schizophrenia. Although longitudinal studies are optimal for assessing stability of cognitive deficits, practice effects often confound assessments, and large and representative subject samples have not been followed over long periods of time. We report results of a cross-sectional study of cognitive deficits early and late in the course of schizophrenia carried out at four different geographic locations to increase sample size and generalizability of findings. We examined a broad set of cognitive functions in 41 recent-onset schizophrenia patients and 106 chronic schizophrenia patients. The study included separate groups of 43 matched controls for the recent-onset sample and 105 matched controls for the chronic schizophrenia sample in order to evaluate the effects of cohort (i.e., age) and diagnosis (i.e., schizophrenia) on cognitive functions. All measures of cognitive function showed effects of diagnosis; however, select time-based measures of problem solving and fine motor dexterity exhibited interactions of diagnosis and cohort indicating that these deficits may progress beyond what is expected with normal aging. Also, worse recall of material in episodic memory was associated with greater length of illness. Nevertheless, findings indicate that nearly all cognitive deficits are comparably impaired across recent-onset and chronic schizophrenia. Published by Elsevier Ltd.

Deciding in the dark: advance directives and continuation of treatment in chronic critical illness.

PubMed

Camhi, Sharon L; Mercado, Alice F; Morrison, R Sean; Du, Qingling; Platt, David M; August, Gary I; Nelson, Judith E

2009-03-01

Chronic critical illness is a devastating syndrome for which treatment offers limited clinical benefit but imposes heavy burdens on patients, families, clinicians, and the health care system. We studied the availability of advance directives and appropriate surrogates to guide decisions about life-sustaining treatment for the chronically critically ill and the extent and timing of treatment limitation. Prospective cohort study. Respiratory Care Unit (RCU) in a large, tertiary, urban, university-affiliated, hospital. Two hundred three chronically critically ill adults transferred to RCU after tracheotomy for failure to wean from mechanical ventilation in the intensive care unit. None. We interviewed RCU caregivers and reviewed patient records to identify proxy appointments, living wills, or oral statements of treatment preferences, resuscitation directives, and withholding/withdrawal of mechanical ventilation, nutrition, hydration, renal replacement and vasopressors. Forty-three of 203 patients (21.2%) appointed a proxy and 33 (16.2%) expressed preferences in advance directives. Do not resuscitate directives were given for 71 patients (35.0%). Treatment was limited for 39 patients (19.2%). Variables significantly associated with treatment limitation were proxy appointment prior to study entry (time of tracheotomy/RCU transfer) (odds ratio = 6.7, 95% confidence interval [CI], 2.3-20.0, p = 0.0006) and palliative care consultation in the RCU (OR = 40.9, 95% CI, 13.1-127.4, p < 0.0001). Median (interquartile range) time to first treatment limitation was 39 (31.0-45.0) days after hospital admission and 13 (8.0-29.0) days after RCU admission. For patients dying after treatment limitation, median time from first limitation to death ranged from 3 days for mechanical ventilation and hydration to 7 days for renal replacement. Most chronically critically ill patients fail to designate a surrogate decision-maker or express preferences regarding life-sustaining treatments. Despite burdensome symptoms and poor outcomes, limitation of such treatments was rare and occurred late, when patients were near death. Opportunities exist to improve communication and decision-making in chronic critical illness.

Complex adaptive chronic care.

PubMed

Martin, Carmel; Sturmberg, Joachim

2009-06-01

The Chronic Care Model (CCM) is widely taken up as the universal operational framework for redesigning health systems to address the increasing chronic disease burden of an ageing population. Chronic care encompasses health promotion, prevention, self management, disease control, treatment and palliation to address 'chronicity' of long journeys through disease, illness and care in the varying contexts of complex health systems. Yet at an operational level, CCM activities are predominantly based on an evidence-base of discreet chronic disease interventions in specific settings; and their demonstrable impact is limited to processes of select disease management such as diabetes in specific disease management programs. This paper proposes a framework that makes sense of the nature of chronicity and its multiple dimensions beyond disease and argues for a set of building blocks and leverage points that should constitute the starting points for 'redesign'? Complex Adaptive Chronic Care is proposed as an idea for an explanatory and implementation framework for addressing chronicity in existing and future chronic care models. Chronicity is overtly conceptualized to encompass the phenomena of an individual journey, with simple and complicated, complex and chaotic phases, through long term asymptomatic disease to bodily dysfunction and illness, located in family and communities. Chronicity encompasses trajectories of self-care and health care, as health, illness and disease co-exist and co-evolve in the setting of primary care, local care networks and at times institutions. A systems approach to individuals in their multi-layered networks making sense of and optimizing experiences of their chronic illness would build on core values and agency around a local vision of health, empowerment of individuals and adaptive leadership, and it responds in line with the local values inherent in the community's disease-based knowledge and the local service's history and dynamics. Complex Adaptive Chronic Care exceeds the current notions of disease management as an endpoint. Primary care team members are system adaptors in partnership with individuals constructing their care and system leadership in response to chronic illness, and enable healthy resilience as well as personal healing and support. Outcomes of complex adaptive chronic care are the emergence of health in individuals and communities through adaptability, self-organization and empowerment. Chronic care reform from within a complex adaptive system framework is bottom up and emergent and stands in stark contrast to (but has to co-exist with) the prevailing protocol based disease care rewarding selective surrogate indicators of disease control. Frameworks such as the Chronic Care Model provide guidance, but do not replace individual experience, local adaptive leadership and responsiveness. The awareness of complexity means opening up problems to a different reality demanding different set of questions and approaches to answer them.

Effects of child long-term illness on maternal employment: longitudinal findings from the UK Millennium Cohort Study

PubMed Central

Pearce, Anna; Whitehead, Margaret; Law, Catherine

2017-01-01

Background: Maternal employment has increased in European countries, but levels of employment are lower among mothers whose children have a limiting long-term illness or disability. However, we do not know whether having a child with a limiting illness prevents take-up or maintenance of paid employment or whether ‘common causes’, such as lack of qualifications or maternal disability lead to both maternal unemployment and childhood illness. Longitudinal data have the potential to distinguish between these. Methods: We analyzed four waves (3, 5, 7 and 11 years) of the Millennium Cohort Study (MCS) to examine the relationship between childhood limiting illness and maternal employment, unadjusted and adjusted for covariates. Multinomial regression models were used to test the association between child illness and trajectories of maternal employment. Fixed effects models assessed whether a new report of a child illness increased the odds of a mother exiting employment. Results: At every wave, maternal employment was more likely if the child did not have a limiting illness. After adjustment for covariates, childhood illness was associated with risks of continuous non-employment (adjusted Relative Risk Ratio = 1.46 [Confidence Interval: 1.21, 1.76]) or disrupted employment (aRRR = 1.26 [CI: 1.06, 1.49]), compared with entering or maintaining employment. If a child developed a limiting long-term illness, the likelihood of their mother exiting employment increased (adjusted Odds Ratio = 1.27 [CI: 1.05, 1.54]). Conclusions: ‘Common causes’ did not fully account for the association between child illness and maternal employment. Having a child with a limiting illness potentially reduces maternal employment opportunities. PMID:28177497

Social Networks, the ‘Work’ and Work Force of Chronic Illness Self-Management: A Survey Analysis of Personal Communities

PubMed Central

Vassilev, Ivaylo; Rogers, Anne; Blickem, Christian; Brooks, Helen; Kapadia, Dharmi; Kennedy, Anne; Sanders, Caroline; Kirk, Sue; Reeves, David

2013-01-01

Self-management support forms a central aspect of chronic Illness management nationally and globally. Evidence for the success of self-management support has mainly focussed on individually-centred outcomes of behavioural change. While it is recognised that social network members play an important role there is currently a gap in knowledge regarding who provides what type of support and under what circumstances. This is relevant for understanding the division of labour and the meeting of needs for those living with a long-term condition. We therefore took a network approach to explore self-management support conceptualising it as types of illness ‘work’ undertaken within peoples’ social networks. 300 people from deprived areas and with chronic illnesses took part in a survey conducted in 2010 in the North West of England. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. The results provide an articulation of how social network members are substantially involved in illness management. Whilst partners and close family make the highest contributions there is evidence of inputs from a wide range of relationships. Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken in peoples’ networks. In networks with ‘no partner’ other people tend to contribute more in the way of illness related work than in networks with a partner. This indicates a degree of substitutability between differently constituted networks, and that the level and type of input by different members of a network might change according to circumstances. A network perspective offers an opportunity to redress the balance of an exclusively individual focus on self-management because it addresses the broader set of contributions and resources available to people in need of chronic illness management and support. PMID:23565162

Longitudinal studies of family units

PubMed Central

Huygen, F.J.A.

1988-01-01

In this paper the transmission of illness and illness behaviour from grandparents to their children and grandchildren is discussed. Maternal grandmothers are found to have most influence. Some prediction of the frequency of new periods of illness among the grandchildren was possible by making use of the number of nervous disorders of the grandparents for which medical help was requested. As family doctors, general practitioners are in a favourable position to anticipate and try to prevent the transmission of inadequate illness behaviour from generation to generation. PMID:3216356

The Family Challenge of Caring for the Chronically Mentally Ill: A Phenomenological Study.

PubMed

Shamsaei, Farshid; Cheraghi, Fatemeh; Esmaeilli, Ravanbakhsh

2015-09-01

Family caregiving for patients with chronic mental illness is influenced by various factors such as political, socioeconomic, and cultural contexts as well as related policies and health services. The purpose of this study was to explore the challenges with which the family caregivers of patients with chronic mental illness have to contend. The research design was qualitative with a phenomenological approach. The research population consisted of 16 long-term carers expressing interest in participating in the project. The carers were the family members of mentally ill relatives who collected their monthly medications at Farshchian Psychiatry Hospital in Hamadan in 2012. Purposive sampling was used to draw the sample. Data were collected by individual in-depth semi-structured interviews, which were tape-recorded and analyzed via Colaizzi's phenomenological method. Rigor was assessed regarding credibility, dependability, conformability, and transferability. Our findings highlighted 4 main themes, namely stress and emotional distress, need for education and information, socioeconomic effects and support, and physical strain. Families experience frustrations when providing support and care to their mentally ill relatives. They, therefore, need appropriate support and intervention by mental health services.

Longitudinal Transcriptome Analysis Reveals a Sustained Differential Gene Expression Signature in Patients Treated for Acute Lyme Disease

PubMed Central

Bouquet, Jerome; Soloski, Mark J.; Swei, Andrea; Cheadle, Chris; Federman, Scot; Billaud, Jean-Noel; Rebman, Alison W.; Kabre, Beniwende; Halpert, Richard; Boorgula, Meher

2016-01-01

ABSTRACT Lyme disease is a tick-borne illness caused by the bacterium Borrelia burgdorferi, and approximately 10 to 20% of patients report persistent symptoms lasting months to years despite appropriate treatment with antibiotics. To gain insights into the molecular basis of acute Lyme disease and the ensuing development of post-treatment symptoms, we conducted a longitudinal transcriptome study of 29 Lyme disease patients (and 13 matched controls) enrolled at the time of diagnosis and followed for up to 6 months. The differential gene expression signature of Lyme disease following the acute phase of infection persisted for at least 3 weeks and had fewer than 44% differentially expressed genes (DEGs) in common with other infectious or noninfectious syndromes. Early Lyme disease prior to antibiotic therapy was characterized by marked upregulation of Toll-like receptor signaling but lack of activation of the inflammatory T-cell apoptotic and B-cell developmental pathways seen in other acute infectious syndromes. Six months after completion of therapy, Lyme disease patients were found to have 31 to 60% of their pathways in common with three different immune-mediated chronic diseases. No differential gene expression signature was observed between Lyme disease patients with resolved illness to those with persistent symptoms at 6 months post-treatment. The identification of a sustained differential gene expression signature in Lyme disease suggests that a panel of selected human host-based biomarkers may address the need for sensitive clinical diagnostics during the “window period” of infection prior to the appearance of a detectable antibody response and may also inform the development of new therapeutic targets. PMID:26873097

After critical care: patient support after critical care. A mixed method longitudinal study using email interviews and questionnaires.

PubMed

Pattison, Natalie; O'Gara, Geraldine; Rattray, Janice

2015-08-01

To explore experiences and needs over time, of patients discharged from ICU using the Intensive Care Experience (ICE-q) questionnaire, Hospital Anxiety and Depression Scale (HADS) and EuroQoL (EQ-5D), associated clinical predictors (APACHE II, TISS, Length of stay, RIKER scores) and in-depth email interviewing. A mixed-method, longitudinal study of patients with >48hour ICU stays at 2 weeks, 6 months, 12 months using the ICE-q, HADS, EQ-5D triangulated with clinical predictors, including age, gender, length of stay (ICU and hospital), APACHE II and TISS. In-depth qualitative email interviews were completed at 1 month and 6 months. Grounded Theory analysis was applied to interview data and data were triangulated with questionnaire and clinical data. Data was collected from January 2010 to March 2012 from 77 participants. Both mean EQ-5D visual analogue scale, utility scores and HADS scores improved from 2 weeks to 6 months, (p=<0.001; p=<0.001), but between 6 and 12 months, no change was found in data from either questionnaire, suggesting improvements level off. These variations were reflected in qualitative data themes: rehabilitation/recovery in the context of chronic illness; impact of critical care; emotional and psychological needs (including sub-themes of: information needs and relocation anxiety). The overarching, core theme related to adjustment of normality. Patient recovery in this population appears to be shaped by ongoing illness and treatment. Email interviews offer a convenient method of gaining in-depth interview data and could be used as part of ICU follow-up. Crown Copyright © 2015. Published by Elsevier Ltd. All rights reserved.

American tertiary clinic-referred bipolar II disorder versus bipolar I disorder associated with hastened depressive recurrence.

PubMed

Dell'Osso, Bernardo; Shah, Saloni; Do, Dennis; Yuen, Laura D; Hooshmand, Farnaz; Wang, Po W; Miller, Shefali; Ketter, Terence A

2017-12-01

Bipolar disorder (BD) is a chronic, frequently comorbid condition characterized by high rates of mood episode recurrence and suicidality. Little is known about prospective longitudinal characterization of BD type II (BD II) versus type I (BD I) in relation to time to depressive recurrence and recovery from major depressive episode. We therefore assessed times to depressive recurrence/recovery in tertiary clinic-referred BD II versus I patients. Outpatients referred to Stanford BD Clinic during 2000-2011 were assessed with Systematic Treatment Enhancement Program for BD (STEP-BD) Affective Disorders Evaluation and with Clinical Monitoring Form during up to 2 years of naturalistic treatment. Prevalence and clinical correlates of bipolar subtype in recovered (euthymic ≥8 weeks) and depressed patients were assessed. Kaplan-Meier analyses assessed the relationships between bipolar subtype and longitudinal depressive severity, and Cox proportional hazard analyses assessed the potential mediators. BD II versus BD I was less common among 105 recovered (39.0 vs. 61.0%, p = 0.03) and more common among 153 depressed (61.4 vs. 38.6%, p = 0.006) patients. Among recovered patients, BD II was associated with 6/25 (24.0%) baseline unfavorable illness characteristics/mood symptoms/psychotropics and hastened depressive recurrence (p = 0.015). Among depressed patients, BD II was associated with 8/25 (33.0%) baseline unfavorable illness characteristics/mood symptoms/psychotropics, but only non-significantly associated with delayed depressive recovery. BD II versus BD I was significantly associated with current depression and hastened depressive recurrence, but only non-significantly associated with delayed depressive recovery. Research on bipolar subtype relationships with depressive recurrence/recovery is warranted to enhance clinical management of BD patients.

Chronic Physical Illness and Mental Health in Children. Results from a Large-Scale Population Study

ERIC Educational Resources Information Center

Hysing, Mari; Elgen, Irene; Gillberg, Christopher; Lie, Stein Atle; Lundervold, Astri J.

2007-01-01

Background: The aim of the present study was to evaluate the sensitivity and specificity of the Strengths and Difficulties Questionnaire (SDQ) in detecting emotional and behavioural problems among children with chronic illness (CI). Methods: Parents and teachers of a population of primary school children in Norway (n = 9430) completed a…

Youth with Disabilities and Chronic Illnesses: An Introductory Guide for Youth and Parents. CYDLINE Reviews.

ERIC Educational Resources Information Center

Minnesota Univ., Minneapolis. National Center for Youth with Disabilities.

This bibliography covers a wide range of issues related to the needs of adolescents and young adults with chronic illnesses and disabilities and their families. For each item in the bibliography, information provided includes author, title, source, date, and abstract. Price information is given when available. Materials include books, audiotapes,…

Adults Living with Limited Literacy and Chronic Illness: Patient Education Experiences

ERIC Educational Resources Information Center

King, Judy; Taylor, Maurice C.

2010-01-01

The purpose of this study was to investigate how Canadian adults living with limited literacy and chronic illness made meaning of their patient education experiences. The study used a hermeneutic phenomenological research design and employed three data sources over a nine-month period. Data was interpreted and analyzed as it was collected,…

Diagnosis of Late Stage, Early Onset, Small Fiber Polyneuropathy

DTIC Science & Technology

2016-10-01

progress. 15. SUBJECT TERMS Neuropathy , Gulf War Illness, chronic widespread pain, chronic multisymptom illness, small- fiber polyneuropathy, case...life or express it in response to environmental triggers encountered by warfighters, such as neurotoxic exposures. 2. KEYWORDS: Neuropathy , Gulf...objective evidence of neuropathy (abnormal skin biopsy or autonomic function test) were analyzed. Preliminary results indicate that SFPN patients

Educational Functioning of Children of Parents with Chronic Physical Illness: A Systematic Review

ERIC Educational Resources Information Center

Chen, Cliff Yung-Chi

2016-01-01

A systematic review of the literature was performed to answer the question: What are the effects of parental chronic physical illness on children's educational functioning? Thirteen studies that met the inclusion criteria for the purpose of this review were identified, indicating the paucity of research on the topic. The results found that…

School Success for Children Experiencing Chronic Illness: National Recommendations for Addressing Global Barriers

ERIC Educational Resources Information Center

Physical Disabilities: Education and Related Services, 2017

2017-01-01

Advances in medicine and medical technologies over the past several decades have extended the lives of many individuals who have chronic illnesses that were once considered terminal. Likewise, these advances have enabled more students to participate in school than ever before. As such, their short-term and long-term academic outcomes must be…

Respite Care. Briefing Paper. Interim Update.

ERIC Educational Resources Information Center

Ambler, Lana; Kupper, Lisa, Ed.

The challenges that families face in caring for a child with a disability or a chronic illness are reviewed in this report on respite care. A parent's narrative describes the difficulties in providing around-the-clock care to a child with a chronic illness. The benefits of respite care are outlined as follows: gives the family peace of mind,…

Reducing Medical Students' Stigmatization of People with Chronic Mental Illness: A Field Intervention at the "Living Museum" State Hospital Art Studio

ERIC Educational Resources Information Center

Cutler, Janis L.; Harding, Kelli J.; Hutner, Lucy A.; Cortland, Clarissa; Graham, Mark J.

2012-01-01

Objective: The authors designed an intervention to reduce beginning medical students' stigmatization of people with chronic mental illness (CMI). Methods: Pre-clinical medical students visited a state psychiatric facility's "Living Museum," a combination patient art studio/display space, as the intervention. During the visit, students interacted…

Solving Developmental Tasks in Adolescents with a Chronic Physical Illness or Physical/Sensory Disability: A Meta-Analysis

ERIC Educational Resources Information Center

Pinquart, Martin; Pfeiffer, Jens P.

2015-01-01

Chronic illnesses and disabilities may impair the attainment of age-typical developmental tasks, such as forming relationships with peers and gaining autonomy. Based on a systematic search in electronic databases and cross-referencing, 447 quantitative empirical studies were included which compared the attainment of developmental tasks of…

Family Supports for Children with Severe Disabilities and Chronic Illnesses in Maryland.

ERIC Educational Resources Information Center

Walker, Pam

This report focuses on positive practices in providing support services to families of children with severe disabilities and chronic illnesses, based on visits to three sites in Maryland: the Family Support Program at the Kennedy Institute in Baltimore, the Coordinating Center for Home and Community Care, and Sick Kids Need Involved People (SKIP).…

Suicide Risk in Adolescents with Chronic Illness: Implications for Primary Care and Specialty Pediatric Practice--A Review

ERIC Educational Resources Information Center

Greydanus, Donald; Patel, Dilip; Pratt, Helen

2010-01-01

Suicide in adolescents is a global tragedy. Research-identified correlates of suicide in youth include depression, academic failure, loss of friends, social isolation, and substance abuse, among others. This review focuses on the potential link between chronic illness in adolescents and increased suicide risk. Research suggests that chronic…

A Brief Cognitive Behavioural Therapy Psychoeducational Group for Chinese People with Chronic Illnesses: An Evaluation Study

ERIC Educational Resources Information Center

Wong, Daniel F. K.; Ip, Priscilla S. Y.; Lee, Kim Man

2017-01-01

This pilot study attempted to examine the effectiveness of a brief cognitive behavioural therapy (CBT) psychoeducational group for Chinese people with chronic illness in Hong Kong. It adopted a single group design, and 52 participants joined the group. A questionnaire with three outcome measures, measuring general mental health, quality of life…

Rural women, technology, and self-management of chronic illness.

PubMed

Weinert, Clarann; Cudney, Shirley; Hill, Wade G

2008-09-01

The objective of this study was to determine the differences in the psychosocial status of 3 groups of chronically ill rural women participating in a computer intervention. The 3 groups were: intense intervention, less-intense intervention, and control. At baseline and following the intervention, measures were taken for social support, self-esteem, empowerment, self-efficacy, depression, stress, and loneliness. ANCOVA results showed group differences for social support and self-efficacy among the overall group. The findings differed for a vulnerable subgroup, with significant between-group differences for social support and loneliness. It was concluded that a computer-delivered intervention can improve social support and self-efficacy and reduce loneliness in rural women, enhancing their ability to self-manage and adapt to chronic illness.

Development of disaster pamphlets based on health needs of patients with chronic illnesses.

PubMed

Motoki, Emi; Mori, Kikuko; Kaji, Hidesuke; Nonami, Yoko; Fukano, Chika; Kayano, Tomonori; Kawada, Terue; Kimura, Yukari; Yasui, Kumiko; Ueki, Hiroko; Ugai, Kazuhiro

2010-01-01

The aim of this research was to develop a pamphlet that would enable patients with diabetes, rheumatic diseases, chronic respiratory disease, and dialysis treatment to be aware of changes in their physical conditions at an early stage of a disaster, cope with these changes, maintain self-care measures, and recover their health. Illness-specific pamphlets were produced based on disaster-related literature, news articles, surveys of victims of the Great Hanshin-Awaji Earthquake Disaster and Typhoon Tokage, and other sources. Each pamphlet consisted of seven sections-each section includes items common to all illnesses as well as items specific to each illness. The first section, "Physical Self-Care", contains a checklist of 18 common physical symptoms as well as symptoms specific to each illness, and goes on to explain what the symptoms may indicate and what should be done about them. The main aim of the "Changes in Mental Health Conditions" section is to detect posttraumatic stress disorder (PTSD) at an early stage. The section "Preventing the Deterioration of Chronic Illnesses" is designed to prevent the worsening of each illness through the provision of information on cold prevention, adjustment to the living environment, and ways of coping with stress. In the sections, "Medication Control" and "Importance of Having Medical Examinations", spaces are provided to list medications currently being used and details of the hospital address, in order to ensure the continued use of medications. The section, "Preparing for Evacuations" gives a list of everyday items and medical items needed to be prepared for a disaster. Finally, the "Methods of Contact in an Emergency" section provides details of how to use the voicemail service. The following content-specific to each illness also was explained in detail: (1) for diabetes, complications arising from the deterioration of the illness, attention to nutrition, and insulin management; (2) for rheumatic diseases, a checklist of factors indicating the worsening of the illness and methods of coping with stress; (3) for chronic respiratory disease, prevention of respiratory infections and management of supplemental oxygen; and (4) for patients requiring dialysis, conditions of dialysis (such as dry weight, dialyzer, number of dialysis treatments, and dialysis hours) and what to do if a disaster occurs during dialysis. It is expected that these pamphlets will be useful to patients with chronic illnesses, and will be used to prepare for disasters, thereby helping the patients cope with the unusual situation that during a disaster and recover as soon as possible.

Meaning of living with severe chronic obstructive lung disease: a qualitative study

PubMed Central

Marx, Gabriella; Nasse, Maximilian; Stanze, Henrikje; Boakye, Sonja Owusu; Nauck, Friedemann; Schneider, Nils

2016-01-01

Objectives To explore what it means for patients to live with chronic obstructive pulmonary disease (COPD) as an incurable and constantly progressing disease. Design Qualitative longitudinal study using narrative and semistructured interviews. This paper presents findings of the initial interviews. Analysis using grounded theory. Setting Lung care clinics and community care in Lower Saxony, Germany. Participants 17 patients with advanced-stage COPD (Global Initiative for Chronic Obstructive Lung Disease (GOLD) III/IV). Findings Analysis shows that these patients have difficulties accepting their life situation and feel at the mercy of the disease, which could be identified as a core-experienced phenomenon. Over a long period of time, patients have only a vague feeling of being ill, caused by uncertain knowledge, slow progress and doubtful attribution of clinical symptoms of the disease (causal conditions). As an action strategy, patients try to maintain daily routines for as long as possible after diagnosis. Both effective standard and rescue medication, which helps to reduce breathlessness and other symptoms, and the feeling of being faced with one's own responsibility (intervening conditions) support this strategy, whereby patients' own responsibility is too painful to acknowledge. As a consequence, patients try to deny the threat to life for a long period of time. Frequently, they need to experience facing their own limits, often in the form of an acute crisis, to realise their health situation. The experience of the illness is contextualised by a continuous increase in limited mobility and social isolation. Conclusion In order to help patients to improve disease awareness, to accept their life situation and to improve their reduced quality of life, patients may benefit from the early integration of palliative care (PC), considering its multiprofessional patient-centred and team-centred approach. Psychological support and volunteer work, which are relevant aspects of PC, should be appropriate to address psychosocial needs. More research is needed to evaluate how patients could benefit from early PC. PMID:27932338

A Chronic Longitudinal Characterization of Neurobehavioral and Neuropathological Cognitive Impairment in a Mouse Model of Gulf War Agent Exposure

PubMed Central

Zakirova, Zuchra; Crynen, Gogce; Hassan, Samira; Abdullah, Laila; Horne, Lauren; Mathura, Venkatarajan; Crawford, Fiona; Ait-Ghezala, Ghania

2016-01-01

Gulf War Illness (GWI) is a chronic multisymptom illness with a central nervous system component that includes memory impairment as well as neurological and musculoskeletal deficits. Previous studies have shown that in the First Persian Gulf War conflict (1990–1991) exposure to Gulf War (GW) agents, such as pyridostigmine bromide (PB) and permethrin (PER), were key contributors to the etiology of GWI. For this study, we used our previously established mouse model of GW agent exposure (10 days PB+PER) and undertook an extensive lifelong neurobehavioral characterization of the mice from 11 days to 22.5 months post exposure in order to address the persistence and chronicity of effects suffered by the current GWI patient population, 24 years post-exposure. Mice were evaluated using a battery of neurobehavioral testing paradigms, including Open Field Test (OFT), Elevated Plus Maze (EPM), Three Chamber Testing, Radial Arm Water Maze (RAWM), and Barnes Maze (BM) Test. We also carried out neuropathological analyses at 22.5 months post exposure to GW agents after the final behavioral testing. Our results demonstrate that PB+PER exposed mice exhibit neurobehavioral deficits beginning at the 13 months post exposure time point and continuing trends through the 22.5 month post exposure time point. Furthermore, neuropathological changes, including an increase in GFAP staining in the cerebral cortices of exposed mice, were noted 22.5 months post exposure. Thus, the persistent neuroinflammation evident in our model presents a platform with which to identify novel biological pathways, correlating with emergent outcomes that may be amenable to therapeutic targeting. Furthermore, in this work we confirmed our previous findings that GW agent exposure causes neuropathological changes, and have presented novel data which demonstrate increased disinhibition, and lack of social preference in PB+PER exposed mice at 13 months after exposure. We also extended upon our previous work to cover the lifespan of the laboratory mouse using a battery of neurobehavioral techniques. PMID:26793076

Gulf War illnesses are autoimmune illnesses caused by reactive oxygen species which were caused by nerve agent prophylaxis.

PubMed

Moss, J I

2012-08-01

Gulf War illnesses (GWI share many of the features of chronic fatigue syndrome (CFS) and both CFS and GWI may be the result of chronic immune system processes. The main suspected cause for GWI, the drug pyridostigmine bromide (PB), has been shown to cause neuronal damage from reactive oxygen species (ROS). ROS have been associated with IgM mediated autoimmune responses against ROS induced neoepitopes in depressed patients and this may also apply to CFS. It therefore follows that the drug used in the Gulf War caused ROS, the ROS modified native molecules, and that this trigged the autoimmune condition we refer to as Gulf War illnesses. Similar mechanisms may apply to other autoimmune illnesses. Copyright © 2012 Elsevier Ltd. All rights reserved.

The economic impact of chronic pain in adolescence: methodological considerations and a preliminary costs-of-illness study.

PubMed

Sleed, Michelle; Eccleston, Christopher; Beecham, Jennifer; Knapp, Martin; Jordan, Abbie

2005-12-15

Chronic pain in adulthood is one of the most costly conditions in modern western society. However, very little is known about the costs of chronic pain in adolescence. This preliminary study explored methods for collecting economic-related data for this population and estimated the cost-of-illness of adolescent chronic pain in the United Kingdom. The client service receipt inventory was specifically adapted for use with parents of adolescent chronic pain patients to collect economic-related data (CSRI-Pain). This method was compared and discussed in relation to other widely used methods. The CSRI-Pain was sent to 52 families of adolescents with chronic pain to complete as a self-report retrospective questionnaire. These data were linked with unit costs to estimate the total care cost package for each family. The economic impact of adolescent chronic pain was found to be high. The mean cost per adolescent experiencing chronic pain was approximately 8,000 pounds per year, including direct and indirect costs. The adolescents attending a specialised pain management unit, who had predominantly non-inflammatory pain, accrued significantly higher costs, than those attending rheumatology outpatient clinics, who had mostly inflammatory diagnoses. Extrapolating the mean total cost to estimated UK prevalence data of adolescent chronic pain demonstrates a cost-of-illness to UK society of approximately 3,840 million pounds in one year. The implications of the study are discussed.

Early Clinical Features of Dengue Virus Infection in Nicaraguan Children: A Longitudinal Analysis

PubMed Central

Biswas, Hope H.; Ortega, Oscar; Gordon, Aubree; Standish, Katherine; Balmaseda, Angel; Kuan, Guillermina; Harris, Eva

2012-01-01

Background Tens of millions of dengue cases and approximately 500,000 life-threatening complications occur annually. New tools are needed to distinguish dengue from other febrile illnesses. In addition, the natural history of pediatric dengue early in illness in a community-based setting has not been well-defined. Methods Data from the multi-year, ongoing Pediatric Dengue Cohort Study of approximately 3,800 children aged 2–14 years in Managua, Nicaragua, were used to examine the frequency of clinical signs and symptoms by day of illness and to generate models for the association of signs and symptoms during the early phase of illness and over the entire course of illness with testing dengue-positive. Odds ratios (ORs) and 95% confidence intervals were calculated using generalized estimating equations (GEE) for repeated measures, adjusting for age and gender. Results One-fourth of children who tested dengue-positive did not meet the WHO case definition for suspected dengue. The frequency of signs and symptoms varied by day of illness, dengue status, and disease severity. Multivariable GEE models showed increased odds of testing dengue-positive associated with fever, headache, retro-orbital pain, myalgia, arthralgia, rash, petechiae, positive tourniquet test, vomiting, leukopenia, platelets ≤150,000 cells/mL, poor capillary refill, cold extremities and hypotension. Estimated ORs tended to be higher for signs and symptoms over the course of illness compared to the early phase of illness. Conclusions Day-by-day analysis of clinical signs and symptoms together with longitudinal statistical analysis showed significant associations with testing dengue-positive and important differences during the early phase of illness compared to the entire course of illness. These findings stress the importance of considering day of illness when developing prediction algorithms for real-time clinical management. PMID:22413033

Socioeconomic variation in the financial consequences of ill health for older people with chronic diseases: a systematic review.

PubMed

Valtorta, Nicole K; Hanratty, Barbara

2013-04-01

Chronic disease has financial consequences for older adults, but it is unclear how this varies between conditions with different disease trajectories. The aim of this study was to review evidence on the financial burden associated with cancer, heart failure or stroke in older people, to identify those most at risk of financial adversity. We systematically searched nine databases for studies with data on the illness-related financial burden (objective), or on the perception of financial hardship (subjective), of older patients and/or their informal caregivers in high-income countries. We identified thirty-eight papers published in English between 1984 and 2012. Studies fell into three categories: those reporting direct, out of pocket, costs (medical and/or non-medical); studies of the indirect costs associated with illness (such as wage or income loss); and papers reporting general financial or economic burdens secondary to illness. Three out of four studies focused on people with cancer. More affluent people had greater out of pocket costs, but were less financially burdened by illness, compared with older adults from lower socioeconomic backgrounds. Disadvantaged patients and families were more likely to report experiences of financial hardship, and spend a higher proportion of their income on all expenses related to their diagnoses. This review illustrates how little is known about the financial adversity experienced by patients with some common chronic conditions. It raises the possibility that higher expenditure by more affluent older people may be creating inequalities in how chronic illness is experienced. The development of effective strategies for financial protection at older ages will require more information on who is affected and at which point in their illness trajectory. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

'Sometimes it feels as if the world goes on without me': adolescents' experiences of living with chronic fatigue syndrome.

PubMed

Winger, Anette; Ekstedt, Mirjam; Wyller, Vegard B; Helseth, Sølvi

2014-09-01

To explore the experience of being an adolescent with chronic fatigue syndrome. Despite ample research, chronic fatigue syndrome is still poorly understood, and there are still controversies related to the illness. Adolescents with chronic fatigue syndrome are often unable to attend school and lose social relations with friends. The challenges they face will affect their quality of life. A qualitative, phenomenological hermeneutical design. Six boys and twelve girls, aged 12-18, were interviewed, emphasising their own experiences living with chronic fatigue syndrome. Analyses were performed using a phenomenological hermeneutical method. The core theme, 'Sometimes it feels as if the world goes on without me', encompasses the feelings an adolescent living with chronic fatigue syndrome might have about life. The core theme was supported by four subthemes: 'On the side of life--locked in and shut out'; 'the body, the illness and me'; 'if the illness is not visible to others, does it exist?'; and 'handling life while hoping for a better future'. The subthemes reflect the experience of social isolation, their own and others' understanding of the illness and hope for the future. Not being able to be with friends, or attend school, made the adolescents feel different and forgotten. They felt alienated in their own bodies and were struggling to be visible to themselves and to their surroundings. Spending less time with friends and more time with their parents constituted a threat to independence and development. Yet they managed to envision a better future despite all the difficulties. To provide effective support and constructive relations to adolescents with chronic fatigue syndrome, all health professions involved need insight from the persons who are themselves ill. Health centres could function as resource centres for patients and healthcare professionals. © 2013 John Wiley & Sons Ltd.

Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey

PubMed Central

Johnson, Lorraine; Wilcox, Spencer; Mankoff, Jennifer

2014-01-01

Overview. The Centers for Disease Control and Prevention (CDC) health-related quality of life (HRQoL) indicators are widely used in the general population to determine the burden of disease, identify health needs, and direct public health policy. These indicators also allow the burden of illness to be compared across different diseases. Although Lyme disease has recently been acknowledged as a major health threat in the USA with more than 300,000 new cases per year, no comprehensive assessment of the health burden of this tickborne disease is available. This study assesses the HRQoL of patients with chronic Lyme disease (CLD) and compares the severity of CLD to other chronic conditions. Methods. Of 5,357 subjects who responded to an online survey, 3,090 were selected for the study. Respondents were characterized as having CLD if they were clinically diagnosed with Lyme disease and had persisting symptoms lasting more than 6 months following antibiotic treatment. HRQoL of CLD patients was assessed using the CDC 9-item metric. The HRQoL analysis for CLD was compared to published analyses for the general population and other chronic illnesses using standard statistical methods. Results. Compared to the general population and patients with other chronic diseases reviewed here, patients with CLD reported significantly lower health quality status, more bad mental and physical health days, a significant symptom disease burden, and greater activity limitations. They also reported impairment in their ability to work, increased utilization of healthcare services, and greater out of pocket medical costs. Conclusions. CLD patients have significantly impaired HRQoL and greater healthcare utilization compared to the general population and patients with other chronic diseases. The heavy burden of illness associated with CLD highlights the need for earlier diagnosis and innovative treatment approaches that may reduce the burden of illness and concomitant costs posed by this illness. PMID:24749006

Religious involvement and health in dialysis patients in Saudi Arabia.

PubMed

Al Zaben, Faten; Khalifa, Doaa Ahmed; Sehlo, Mohammad Gamal; Al Shohaib, Saad; Binzaqr, Salma Awad; Badreg, Alae Magdi; Alsaadi, Rawan Ali; Koenig, Harold G

2015-04-01

Patients on hemodialysis experience considerable psychological and physical stress due to the changes brought on by chronic kidney disease. Religion is often turned to in order to cope with illness and may buffer some of these stresses associated with illness. We describe here the religious activities of dialysis patients in Saudi Arabia and determined demographic, psychosocial, and physical health correlates. We administered an in-person questionnaire to 310 dialysis patients (99.4 % Muslim) in Jeddah, Saudi Arabia, that included the Muslim Religiosity Scale, Structured Clinical Interview for Depression, Hamilton Depression Rating Scale, Global Assessment of Functioning scale, and other established measures of psychosocial and physical health. Bivariate and multivariate analyses identified characteristics of patients who were more religiously involved. Religious practices and intrinsic religious beliefs were widespread. Religious involvement was more common among those who were older, better educated, had higher incomes, and were married. Overall psychological functioning was better and social support higher among those who were more religious. The religious also had better physical functioning, better cognitive functioning, and were less likely to smoke, despite having more severe overall illness and being on dialysis for longer than less religious patients. Religious involvement is correlated with better overall psychological functioning, greater social support, better physical and cognitive functioning, better health behavior, and longer duration of dialysis. Whether religion leads to or is a result of better mental and physical health will need to be determined by future longitudinal studies and clinical trials.

Subtyping Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) By Course of Illness.

PubMed

Stoothoff, Jamie; Gleason, Kristen; McManimen, Stephanie; Thorpe, Taylor; Jason, Leonard A

2017-01-01

Past research has subtyped patients with Myalgic Encephalolyelitis (ME) and Chronic Fatigue Syndrome (CFS) according to factors related to illness onset, illness duration, and age. However, no classification system fully accounts for the wide range of symptom severity, functional disability, progression, and prognosis seen among patients. This study examined whether illness trajectories among individuals with CFS were predictive of different levels of symptomology, functional disability, and energy expenditure. Of the participants ( N=541 ), the majority described their illness as Fluctuating (59.7%), with 15.9% Constantly Getting Worse, 14.1% Persisting, 8.5% Relapsing and Remitting, and 1.9% Constantly Getting Better. The illness courses were associated with significant differences in symptomology on select domains of the DSQ, functioning on select subscales of the SF-36, and on overall levels of energy expenditure. The significant symptomatic and functional differences between groups suggest that subtyping patients with CFS according to illness course is a promising method for creating more homogeneous groups of patients.

Long-term outcome of patients with neurotic illness in general practice.

PubMed Central

Lloyd, K. R.; Jenkins, R.; Mann, A.

1996-01-01

OBJECTIVE--To determine the 11 year outcome of neurotic disorder in general practice. DESIGN--Cohort study over 11 years. SETTING--Two general practices in Warwickshire England. SUBJECTS--100 patients selected to be representative of those identified nationally by general practitioners as having neurotic disorders. MAIN OUTCOME MEASURES--Mortality, morbidity, and use of health services. RESULTS--At 11 years 87 subjects were traced. The 11 year standardised mortality ratio was 173 (95% confidence interval 164 to 200). 47 were cases on the general health questionnaire, 32 had a relapsing or chronic psychiatric course, and 49 a relapsing or chronic physical course. Treatment for psychiatric illness was mainly drugs. The mean number of consultations per year was 10.8 (median 8.7). A persistent psychiatric diagnosis at one year follow up was associated with high attendance ( > 12 visits a year for 11 years) at follow up after age, sex, and physical illness were adjusted for. Severity of psychiatric illness (general health questionnaire score) at outset predicted general health questionnaire score at 11 year follow up, course of psychiatric illness, and high consultation rate. CONCLUSION--These data support the view that a neurotic illness can become chronic and is associated with raised mortality from all causes and high use of services. Such patients need effective intervention, particularly those with a more severe illness who do not recover within one year. PMID:8664767

Meeting the challenges of chronic illness: a nurse-led collaborative community care program in Thailand.

PubMed

Sindhu, Siriorn; Pholpet, Chennet; Puttapitukpol, Somjai

2010-01-01

Chronic illness is of concern to health care systems globally. Although a significant evidence base supports the concept of nurse-led interventions, less data is available to address unique features of health care systems in the developing world. The purpose of this study aimed to undertake preliminary testing of an intervention of nurse-led community care program, the Network Collaborative Action Plan (N-CAP), to assess the impact on disease severity and patient satisfaction. A quasi-experimental study, using historical controls, evaluated a collaborative nurse-led intervention to promote coordination and continuity of care for patients with chronic illness. Participants, diagnosed with chronic obstructive lung disease (COPD), coronary heart disease (CHD) and chronic heart failure (CHF) were recruited. Prospective consecutive patient meeting the study criteria (n=47) were assigned into the control group and following development and implementation of the intervention eligible consenting patients were enrolled in the experimental group (n=44). Participants in the experimental group had significantly tower scores on severity of disease measurements during the third week (F = 4.61, p = 0.035) and the eighth week hospital (F = 4.30, p = .041) following hospital discharge than those in the control group. Participants in the experimental group expressed significantly higher scores on satisfaction with community care than those in the control group. A nurse-led, collaboratively developed program has potential to improve satisfaction and decrease symptom development in people with chronic illnesses in Thailand.

Disruption of the microbiota across multiple body sites in critically ill children.

PubMed

Rogers, Matthew B; Firek, Brian; Shi, Min; Yeh, Andrew; Brower-Sinning, Rachel; Aveson, Victoria; Kohl, Brittany L; Fabio, Anthony; Carcillo, Joseph A; Morowitz, Michael J

2016-12-29

Despite intense interest in the links between the microbiome and human health, little has been written about dysbiosis among ICU patients. We characterized microbial diversity in samples from 37 children in a pediatric ICU (PICU). Standard measures of alpha and beta diversity were calculated, and results were compared with data from adult and pediatric reference datasets. Bacterial 16S rRNA gene sequences were analyzed from 71 total tongue swabs, 50 skin swabs, and 77 stool samples or rectal swabs. The mean age of the PICU patients was 2.9 years (range 1-9 years), and many were chronically ill children that had previously been hospitalized in the PICU. Relative to healthy adults and children, alpha diversity was decreased in PICU GI and tongue but not skin samples. Measures of beta diversity indicated differences in community membership at each body site between PICU, adult, and pediatric groups. Taxonomic alterations in the PICU included enrichment of gut pathogens such as Enterococcus and Staphylococcus at multiple body sites and depletion of commensals such as Faecalibacterium and Ruminococcus from GI samples. Alpha and beta diversity were unstable over time in patients followed longitudinally. We observed the frequent presence of "dominant" pathogens in PICU samples at relative abundance >50%. PICU samples were characterized by loss of site specificity, with individual taxa commonly present simultaneously at three sample sites on a single individual. Some pathogens identified by culture of tracheal aspirates were commonly observed in skin samples from the same patient. We conclude that the microbiota in critically ill children differs sharply from the microbiota of healthy children and adults. Acknowledgement of dysbiosis associated with critical illness could provide opportunities to modulate the microbiota with precision and thereby improve patient outcomes.

Access to Mobile Communication Technology and Willingness to Participate in Automated Telemedicine Calls Among Chronically Ill Patients in Honduras

PubMed Central

Mendoza-Avelares, Milton O.; Milton, Evan C.; Lange, Ilta; Fajardo, Roosevelt

2010-01-01

Abstract Objectives: Patients in underdeveloped countries may be left behind by advances in telehealthcare. We surveyed chronically ill patients with low incomes in Honduras to measure their use of mobile technologies and willingness to participate in mobile disease management support. Materials and Methods: 624 chronically ill primary care patients in Honduras were surveyed. We examined variation in telephone access across groups defined by patients' sociodemographic characteristics, diagnoses, and access to care. Logistic regression was used to identify independent correlates of patients' interest in automated telephonic support for disease management. Results: Participants had limited education (mean 4.8 years), and 65% were unemployed. Eighty-four percent had telephone access, and 78% had cell phones. Most respondents had voicemail (61%) and text messaging (58%). Mobile technologies were particularly common among patients who had to forego clinic visits and medications due to cost concerns (each p < 0.05). Most patients (>80%) reported that they would be willing to receive automated calls focused on appointment reminders, medication adherence, health status monitoring, and self-care education. Patients were more likely to be willing to participate in automated telemedicine services if they had to cancel a clinic appointment due to transportation problems or forego medication due to cost pressures. Conclusions: Even in this poor region of Honduras, most chronically ill patients have access to mobile technology, and most are willing to participate in automated telephone disease management support. Given barriers to in-person care, new models of mobile healthcare should be developed for chronically ill patients in developing countries. PMID:21062234

CAREGIVERS OF THE CHRONICALLY CRITICALLY ILL AFTER DISCHARGE FROM THE INTENSIVE CARE UNIT: SIX MONTHS’ EXPERIENCE

PubMed Central

Choi, JiYeon; Donahoe, Michael P.; Zullo, Thomas G.; Hoffman, Leslie A.

2011-01-01

Background Chronically critically ill patients typically undergo an extended recovery after discharge from the intensive care unit, making involvement of family caregivers essential. Prior studies provide limited detail about specific ways this experience affects caregivers. Objectives To (1) describe lifestyle restrictions and distress among caregivers of chronically critically ill patients 1 and 6 months after discharge and (2) explore how caregivers’ lifestyle restrictions and distress differ according to patients’ and caregivers’ characteristics. Methods Sixty-nine chronically critically ill patients and their family caregivers completed follow-up at 1 and 6 months after discharge from the intensive care unit. Data were collected from medical records and survey via telephone or mail. Results Caregivers’ perceived lifestyle restrictions (Changes in Role Function) decreased from 1 month (mean [SD], 23.0 [8.3]) to 6 months (19.4 [8.6]) after discharge (P = .003), although patients’ problem behaviors and caregivers’ distress (8.9 [9.3] vs 7.9 [9.6], respectively; P = .32) did not change. Change in caregivers’ lifestyle restrictions differed by patients’ disposition (P = .02) and functional status (Health Assessment Questionnaire; P = .007). Caregiver’s lifestyle restrictions remained high when patients never returned home or never recovered their preadmission functional status. Caregivers reported the most restrictions in social life and personal recreation. Patients’ negative emotions and pain caused the most caregiver distress. Conclusions Caregivers of chronically critically ill patients perceived fewer lifestyle restrictions over time but reported no change in patients’ problem behaviors or distress. Lifestyle restrictions and distress remained high when patients never returned home or regained their preadmission functional status. PMID:21196567

Caregivers of the chronically critically ill after discharge from the intensive care unit: six months' experience.

PubMed

Choi, JiYeon; Donahoe, Michael P; Zullo, Thomas G; Hoffman, Leslie A

2011-01-01

Chronically critically ill patients typically undergo an extended recovery after discharge from the intensive care unit, making involvement of family caregivers essential. Prior studies provide limited detail about specific ways this experience affects caregivers. To (1) describe lifestyle restrictions and distress among caregivers of chronically critically ill patients 1 and 6 months after discharge and (2) explore how caregivers' lifestyle restrictions and distress differ according to patients' and caregivers' characteristics. Sixty-nine chronically critically ill patients and their family caregivers completed follow-up at 1 and 6 months after discharge from the intensive care unit. Data were collected from medical records and survey via telephone or mail. Caregivers' perceived lifestyle restrictions (Changes in Role Function) decreased from 1 month (mean [SD], 23.0 [8.3]) to 6 months (19.4 [8.6]) after discharge (P = .003), although patients' problem behaviors and caregivers' distress (8.9 [9.3] vs 7.9 [9.6], respectively; P = .32) did not change. Change in caregivers' lifestyle restrictions differed by patients' disposition (P = .02) and functional status (Health Assessment Questionnaire; P = .007). Caregiver's lifestyle restrictions remained high when patients never returned home or never recovered their preadmission functional status. Caregivers reported the most restrictions in social life and personal recreation. Patients' negative emotions and pain caused the most caregiver distress. Caregivers of chronically critically ill patients perceived fewer lifestyle restrictions over time but reported no change in patients' problem behaviors or distress. Lifestyle restrictions and distress remained high when patients never returned home or regained their preadmission functional status.

Disability management: organizational diversity and Dutch employment policy.

PubMed

Kopnina, Helen; Haafkens, Joke A

2010-06-01

While Human Resource Managers (HRM) and line managers could play a significant role in the prevention of job-related problems and in promotion of early job-continuation, it is not clear wether the chronically ill workers are recognized as a group. Unlike some other groups, distinguished by gender, age or ethnicity, those with chronic illness are less distinct and may not be included in diversity management programs. The aim of this research is to address theory and evidence in literature about the topic, as well as to inquire whether chronic illness of the employees is 'visible' in practice. For desk research, we used a systematic search strategy involving medical, statistical, management, and social science databases (Web of Science, MedLine, Pub Med, Psych Info, etc.). Research results are based on case studies conducted with the managers and HRM of government and commercial organizations between March 2007 and October 2008 and between October 2008 and April 2009. These case studies were based on open interviews and focus group sessions (for human resource departments) which were consequently analyzed using thematical analysis. For group sessions, we used concept mapping to collect information from two groups of HRM professionals and managers. Secondary analysis included thematic and content analysis of 'best practice' organizations carried out by the Dutch organization Gatekeeper. We have discovered that the chronically ill employees are largely invisible to HRM practitioners, line managers who do not always have the right instruments for implementation of the European or national frameworks. Most practitioners are unaware of the impact of chronic illness in their organizations and in employees work life.

Opening the Door: The Experience of Chronic Critical Illness in a Long-Term Acute Care Hospital.

PubMed

Lamas, Daniela J; Owens, Robert L; Nace, R Nicholas; Massaro, Anthony F; Pertsch, Nathan J; Gass, Jonathon; Bernacki, Rachelle E; Block, Susan D

2017-04-01

Chronically critically ill patients have recurrent infections, organ dysfunction, and at least half die within 1 year. They are frequently cared for in long-term acute care hospitals, yet little is known about their experience in this setting. Our objective was to explore the understanding and expectations and goals of these patients and surrogates. We conducted semi-structured interviews with chronically critically ill long-term acute care hospital patients or surrogates. Conversations were recorded, transcribed, and analyzed. One long-term acute care hospital. Chronically critically ill patients, defined by tracheotomy for prolonged mechanical ventilation, or surrogates. Semi-structured conversation about quality of life, expectations, and planning for setbacks. A total of 50 subjects (30 patients and 20 surrogates) were enrolled. Thematic analyses demonstrated: 1) poor quality of life for patients; 2) surrogate stress and anxiety; 3) optimistic health expectations; 4) poor planning for medical setbacks; and 5) disruptive care transitions. Nearly 80% of patient and their surrogate decision makers identified going home as a goal; 38% were at home at 1 year. Our study describes the experience of chronically critically ill patients and surrogates in an long-term acute care hospital and the feasibility of patient-focused research in this setting. Our findings indicate overly optimistic expectations about return home and unmet palliative care needs, suggesting the need for integration of palliative care within the long-term acute care hospital. Further research is also needed to more fully understand the challenges of this growing population of ICU survivors.

Pediatric advance directives: parents' knowledge, experience, and preferences.

PubMed

Liberman, Danica B; Pham, Phung K; Nager, Alan L

2014-08-01

To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. We conducted a prospective, cross-sectional survey of parents and caregivers of children who have chronic illness. During ambulatory medical visits, participants were asked about previous AD experience and knowledge, future preferences regarding AD discussions, their child's past and current health status, and family demographics. Among 307 participants surveyed, previous AD experience was low, with 117 (38.1%) having heard of an AD, 54 (17.6%) having discussed one, and 77 (25.1%) having known someone who had an AD. Furthermore, 27 (8.8%) participants had an AD or living will of their own, and 8 (2.6%) reported that their chronically ill child had an AD. Previous AD knowledge was significantly more likely among parents and caregivers who had a college degree than those who did not have a high school diploma, yet significantly less likely among primarily Spanish-speaking parents and caregivers than those primarily English-speaking. Interest in creating an AD for the child was reported by 151 (49.2%) participants, and was significantly more likely among families who had more frequent emergency department visits over the previous year. The limited AD experience and knowledge of parents and caregivers of children who have chronic illness and their interest in creating an AD suggest an unmet need among families of children who have chronic illness, and an opportunity to enhance communication between families and medical teams regarding ADs and end-of-life care. Copyright © 2014 by the American Academy of Pediatrics.

Negative perceptions of illness and health are associated with frequent use of physiotherapy in primary healthcare.

PubMed

Opseth, Gro; Wahl, Astrid Klopstad; Bjørke, Gustav; Mengshoel, Anne Marit

2018-03-01

There is growing concern that an ageing population and increasing number of patients with chronic illnesses in the future will foster a need for health services beyond the resources available in society. Patients with chronic illnesses are reported to be frequent users of physicians' services in the primary health sector. Therapies for patients with chronic musculoskeletal illnesses are delivered by physiotherapists in this sector. However, we know little about the use of physiotherapy services and the factors that may explain their use. The aim of the present study was to examine the association between the regular/non-regular use of physiotherapy services, impacts of illness, and perceptions of illness and health. A cross-sectional survey included patients between 18 and 70 years of age who visited a physiotherapy outpatient clinic in Oslo during one randomly chosen week. Patient characteristics and use of physiotherapy were mapped. The Brief Illness Perception Questionnaire (BIPQ), a single item of the Short Form Health Survey (SF-12) and the Ørebro Musculoskeletal Pain Questionnaire (ØMPQ) were used to assess perceptions of illness and health, and impacts of illness. Data were analysed using independent sample t-tests and logistic regression analysis. A total of 507 patients with a mean age of 46 (standard deviation 12) years participated, of whom 54% were regular users of physiotherapy. BIPQ (p = 0.02; β = 0.03) and the single-item on general health perception (p = 0.001; β = 0.44,) were the only significant variables in the final equation associated with regular use of physiotherapy. About half of the participants were regular, high consumers of physiotherapy, and negative perceptions of illness and health were associated with this regular use. Copyright © 2017 John Wiley & Sons, Ltd.

Religious faith in Mexican-American families dealing with chronic childhood illness.

PubMed

Rehm, R S

1999-01-01

To explore Mexican-American family experiences with chronic childhood illness, from the perspective of parents, and report findings about the influence of religious faith on families' spiritual and secular responses to illness. Mexican-Americans are often characterized as religious, fatalistic, and passive, but families' perceptions of the consequences of their daily faith and its meaning in the face of chronic childhood illness is not well understood. Descriptive. The sample included 25 parents from 19 families living with children with a variety of chronic conditions. Data were collected in 1995-1996. Interpretive, using symbolic interaction as the framework, and in-depth interviewing for data collection. Parents professed a variety of beliefs and devotional practices. Six unifying dimensions of religious faith were related to parental caretaking and decision making for the family: (a) God determined the outcome of the child's illness, (b) God and health care for the child were closely linked, (c) parents took an active role in facilitating God's will, (d) families had obligations to God, (e) intercession with God by others was often sought by or offered to the family, and (f) faith encouraged optimism. Families were not fatalistic in the sense of feeling outcomes were predetermined and unalterable. Family members took spiritual and secular actions to assure the best possible familial and professional care for their child and sought to influence God's good will on behalf of the child and family.

Psychosocial predictors of suicidal ideation in patients diagnosed with chronic illnesses in Jordan.

PubMed

Amer, Nuha Remon Yacoub; Hamdan-Mansour, Ayman M

2014-11-01

Suicide ideation (SI) is considered a major psychiatric emergency in patients diagnosed with chronic illnesses. Suicide ideation is a multifaceted issue that involves bio- psychosocial and cultural factors that interfere with patients' abilities. The purpose of this study is to investigate the psychosocial predictors of SI among Jordanian patients with chronic illnesses. A cross-sectional design using self-administered questionnaires was used to collect data from 480 patients diagnosed with diabetes mellitus, cardiovascular diseases, and cancer. The mean score of suicide ideation was 4.07 (SD  =  1.7) and almost 20% (n  =  85) of the participants found to be suicidal, the majority were suffering from moderate to severe depressive symptoms and low levels of life satisfaction. Also, the analysis showed that the patients had a high level of optimism and moderate perception of social support from family, friends, and significant other. Type of illness has a significant relation to the 'seriousness' component of SI (p  =  0.023). Depression (β  =  0.345, p<0.001) was a significant risk factor for 'thought' component of SI, and optimism (β  =  -0.008, p<0.05) a significant protective factor against the thought component of SI. Patients with chronic illnesses suffer serious psychological disturbances and are in need of psychological care, and periodic psychological screening to maintain their psychological wellbeing.

Positioning, telling, and performing a male illness: Chronic prostatitis/chronic pelvic pain syndrome.

PubMed

Wood, Nicholas; Qureshi, Annum; Mughal, Fahim

2017-11-01

There is a paucity of illness accounts of men with chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS), despite a significant level of prevalence and burden of disease. This qualitative study thus elicited twelve accounts from men suffering with CP/CPPS. Narrative analysis was employed, focusing primarily on narrative content. Three major narrative themes were identified: (1) Medical stories: Blame and shame; (2) The Erratic nature of CP/CPPS; and (3) Ongoing struggles for coping and cures and the Search for meaning. Recommendations were made for health care providers and increasing the internal agency, support and activism of men with this debilitating condition. Statement of contribution What is already known on this subject? One qualitative account of this male illness (CP/CPPS) exists: an IPA study. Five cross-sectional themes: (1) Need for repeated confirmation - disease not life-threatening nor leading inexorably towards cancer; (2) Disturbed sleep and fatigue; (3) Concealing pain and problems - 'normalizing'; (4) Enduring pain by performing activities; and (5) Abrupt mood swings and limited sociality. What does this study add? Narrative analysis adds information as to how this illness is managed and survived over time. It challenges the findings (above) by providing an insider perspective. Novel narrative themes include meaning-making amongst others. Masculine performance and experiences are also crucial to this stigmatized illness. © 2017 The British Psychological Society.

Course of illness after the onset of chronic rejection in lung transplant recipients.

PubMed

Song, Mi-Kyung; De Vito Dabbs, Annette; Studer, Sean M; Zangle, Sarah E

2008-05-01

Despite the overall negative impact of chronic rejection on quality of life and survival after lung transplant, the specific clinical indicators of deterioration have not been identified. To describe the course of illness after the onset of chronic rejection, including demographic and transplant variables, morbidity, mortality, health resource utilization, and end-of-life care, and to identify clinical indicators of deterioration in health and limited survival after the onset of chronic rejection. The medical records of 311 recipients of lung transplants between 1998 and 2004 were reviewed retrospectively to identify 60 recipients who experienced chronic rejection. Median survival after chronic rejection was 31.34 months. Time to rejection (mean, 26.05 months; SD, 16.85) was significantly correlated with overall survival without need of a retransplant (r = 0.64; P < .001). The earlier the onset of chronic rejection or the need for oxygen at home, the shorter was the period of survival after chronic rejection and the more frequent were hospital and intensive care unit admissions and prolonged stays. Of the 26 recipients who died, 65% died at the transplant center, and all but 1 died in the intensive care unit; 3 died after multiple attempts of cardiopulmonary resuscitation; life support was ultimately withdrawn in 69%. Lung transplant recipients who experience chronic graft rejection have high rates of morbidity, mortality, and health resource utilization; however, the course of illness after chronic rejection is highly variable.

What's Eating Gilbert Grape?: A Case Study of Chronic Illness

ERIC Educational Resources Information Center

Alexander, Matthew; Waxman, Dael; White, Patricia

2006-01-01

Cinemeducation refers to the use of movies or movie clips to educate learners about the psychosocial aspects of health care. This paper describes the use of a clip from the movie, "What's Eating Gilbert Grape?" to teach medical students about chronic illness. The clip is used to set up a case study based on the lead character, Gilbert…

Physical Activity on Medical Prescription: A Qualitative Study of Factors Influencing Take-Up and Adherence in Chronically Ill Patients

ERIC Educational Resources Information Center

Gasparini, William; Knobé, Sandrine; Didierjean, Romaine

2015-01-01

Objective: This study sought to determine the effects of an innovative public health programme offering physical and sports activities on medical prescription to chronically ill patients. Method: Semi-structured interviews were conducted with programme participants at two time points: at the start of their activity (n?=?33) and 3?months after the…

Understanding How Irritable Bowel Disease Affects Full-Time Employees at a Community College in North Carolina

ERIC Educational Resources Information Center

LeGrand, Erin Trado

2014-01-01

The fields of Adult Education and Higher Education serve not only to educate students, but also as employers for many faculty and staff. All too often, employees are treated homogenously and little thought is given to employees who face the trials of coping with a chronic illness. Employees with chronic illness face marginalization in the…

The Trade-Offs of Developing a Case Management Model for Chronically Mentally Ill People.

ERIC Educational Resources Information Center

Belcher, John R.

1993-01-01

Addresses role of case management in care of chronically mentally ill persons. Notes that case management can be effective if designed so that services match client needs and service costs are measured accurately. Contends that profit-maximizing nature of U.S. health care system makes some form of capitation likely in design of case management…

Concerned about Their Learning: Mathematics Students with Chronic Illness and Their Teachers at School

ERIC Educational Resources Information Center

Wilkie, Karina J.

2014-01-01

Chronic illness often goes hand-in-hand with absence from school, and students miss out on learning opportunities at school for extended or accumulative periods of time. Many young people seek to continue their school studies nonetheless. The need to consider viable ways to support them academically arose in the context of a project called…

School Nurse Case Management for Children with Chronic Illness: Health, Academic, and Quality of Life Outcomes

ERIC Educational Resources Information Center

Engelke, Martha Keehner; Guttu, Martha; Warren, Michelle B.; Swanson, Melvin

2008-01-01

More children with chronic illnesses are attending school, and some of them struggle academically because of issues related to their health. School-based case management has been suggested as one strategy to improve the academic success of these children. This study tracked the academic, health, and quality of life outcomes for 114 children with…

A Virtual Learning Environment for the Continuation of Education and Its Relationship with the Mental Well-Being of Chronically Ill Adolescents

ERIC Educational Resources Information Center

Zhu, Chang; Van Winkel, Lies

2016-01-01

Research has shown that the continuation of education by chronically ill adolescents is an important way to avoid social isolation, psychosocial problems and the accumulation of learning difficulties. In this light, virtual learning environments (VLEs), which connect sick adolescents to their schools, play an important role in ensuring that the…

Communicative Imagery: A Qualitative Investigation of the Effectiveness of a Behavior Change Strategy on the Chronically Mentally Ill.

ERIC Educational Resources Information Center

Lippard, Paula V.

An exploratory study investigated the success of a small group behavior change program in eliminating self-defeating behavior (SDB) in outpatients with chronic mental illness. Four of the six subjects were outpatients at the local mental health center but were currently not exhibiting psychotic behavior. The remaining two subjects were student…

Validation of the Development Work Personality Scale for Use with Persons with Disabilities and Chronic Illness

ERIC Educational Resources Information Center

O'Sullivan, Deirdre Elizabeth Mary

2009-01-01

The current demands of the global economy has led to an increased focus on personality and behaviors as they relate to employment outcomes for the rising number of people living with disabilities and chronic illness. There are a number of well-established and validated theories, models, and instruments that have been implemented to improve work…

The Effects of a Leisure Education Program upon Persons with Chronic Mental Illnesses Who Reside in Group Homes

ERIC Educational Resources Information Center

Mitchell, Lynda Leftridge

1998-01-01

The purpose of the research study was to investigate the leisure behavior, social avoidance and distress, social self-efficacy, life satisfaction, global function, and negative symptoms of 26 individuals with chronic mental illnesses who reside in group homes. The study used a treatment group and a control group design to evaluate the…

Playing with Moon Sand: A Narrative Inquiry into a Teacher's Experiences Teaching Alongside a Student with a Chronic Illness

ERIC Educational Resources Information Center

Davis, Beth; Murphy, M. Shaun

2016-01-01

This paper inquires into the experiences of an early childhood educator named Claire who taught a young girl with a chronic illness at East Willows Elementary School, a western Canadian elementary school. Using narrative inquiry as the methodology, Claire's experiences in her curriculum making alongside Madeline a young girl with Turner syndrome…

A Multi-Modal Digital Game-Based Learning Environment for Hospitalized Children with Chronic Illnesses.

ERIC Educational Resources Information Center

Chin, Jui-Chih; Tsuei, Mengping

2014-01-01

The aim of this study was to explore the digital game-based learning for children with chronic illnesses in the hospital settings. The design-based research and qualitative methods were applied. Three eight-year-old children with leukemia participated in this study. In the first phase, the multi-user game-based learning system was developed and…

Been There, Done That: The Experience of Acting as a Young Adult Mentor to Adolescents Living With Chronic Illness.

PubMed

Ahola Kohut, Sara; Stinson, Jennifer; Forgeron, Paula; Luca, Stephanie; Harris, Lauren

2017-10-01

To explore the perceived benefits and challenges of acting as a young adult peer mentor to adolescents with chronic illness. A qualitative descriptive study, using interviews and a focus group, explored the perceptions of young adult peer mentors following participation in the iPeer2Peer program, a Skype-based peer-mentorship program for adolescents with chronic illness. Interviews and focus group data were transcribed and analyzed using inductive content analysis. Ten peer mentors (20.00 ± 1.49 years old, range 17-22 years; diagnosed with chronic pain [n = 4] or juvenile idiopathic arthritis [n = 6]) who mentored four mentees (±2.55 mentees, range = 1-10 mentees) participated. Four main categories were identified: social connection, personal growth, mentor role in mentee growth, and logistics of mentorship. Acting as a peer mentor online is a feasible and rewarding experience that supports the mentor's own illness self-management, social connection, and personal growth. © The Author 2017. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

[Definition of medical competence. The point of view of chronically-ill patients in the Andalusian public healthcare system (Spain)].

PubMed

Prieto Rodríguez, M Ángeles; Danet Danet, Alina; Escudero Carretero, María J; Ruiz Azarola, Ainhoa; Pérez Corral, Olivia; García Toyos, Noelia

2012-01-01

To identify the attributes used by chronically-ill patients to describe physicians' competence in the public healthcare system in Andalucia. A total of 147 chronically-ill patients and their relatives were included in this qualitative study. Focal groups and in-depth interviews were performed in health centers and outpatient centers in Granada, Malaga, Seville, Cadiz and Cordoba between 2007 and 2008. Content analysis was carried out using Nudist Vivo. The participants defined medical competence as combining elements of technical ability and knowledge (awareness of and interest in the disease, continuity of follow-up and requesting specific tests) with interpersonal skills related to communication, information (informing, listening, trust, prompting questions) and attention (courtesy, cordiality, respect, interest and approachability). Primary care was expected to provide a close relationship, personalized treatment, information, drug prescription, and referral to specialized care. Specialized care was expected to provide an accurate diagnosis and appropriate treatment, information and follow-up. Highly valued aspects of emergency care were symptom relief, accurate diagnosis, referral to specialists and courtesy. Chronically-ill patients based their evaluation of medical competence on technical and interpersonal skills. Copyright © 2011 SESPAS. Published by Elsevier Espana. All rights reserved.

Anticipated stigma and quality of life among people living with chronic illnesses.

PubMed

Earnshaw, Valerie A; Quinn, Diane M; Park, Crystal L

2012-06-01

We examined the process by which anticipated stigma relates to quality of life among people living with chronic illnesses. We hypothesized that stress, social support and patient satisfaction mediate the relationships between three sources of anticipated stigma and quality of life. Data were collected from adults living with chronic illnesses recruited from support groups and online communities, and were analysed with path analysis. Results demonstrated that stress mediated the relationships between anticipated stigma from friends and family, and work colleagues with quality of life; social support mediated the relationships between anticipated stigma from friends and family, and work colleagues with quality of life; and patient satisfaction mediated the relationship between anticipated stigma from healthcare providers with quality of life. The final path model fit the data well (χ (2) (8) = 8.66, p = 0.37; RMSEA = 0.02; CFI = 0.99; SRMR = 0.03), and accounted for 60% of the variance in participants' quality of life. This work highlights potential points of intervention to improve quality of life. It calls attention to the importance of differentiating between sources of anticipated stigma in clinical settings, interventions and research involving people living with chronic illnesses.

Report on Honduras: ripples in the pond--the financial crisis and remittances to chronically ill patients in Honduras.

PubMed

Piette, John D; Mendoza-Avelares, Milton O; Chess, Laura; Milton, Evan C; Matiz Reyes, Armando; Rodriguez-Saldaña, Joel

2012-01-01

The U.S. financial crisis has affected employment opportunities for Latino immigrants, and this could affect their ability to send financial assistance, or "remittances", to chronically ill family members in their home country. In a cross-sectional survey of 624 chronically ill adults conducted in Honduras between June and August 2009, respondents reported their receipt of remittances, health service use, and cost-related access barriers. Fifty-four percent of respondents reported relatives living outside the country, and of this group, 66 percent (37% of the overall sample) received remittances. Seventy-four percent of respondents receiving remittances reported a decrease over the prior year, mostly due to job losses among their relatives abroad. Respondents reporting reductions in remittances received significantly less per month, on average, than those without a reduction (US $170 vs. $234; p = 0.01). In multivariate models, respondents experiencing a reduction in remittances used fewer health services and medications due to cost concerns. Remittance payments from relatives resident in the United States are a major source of income for chronically ill individuals in Latin America. Most recipients of remittances reported a reduction during the financial downturn that affected their access to care.

Transitional Care for Older Adults with Chronic Illnesses as a Vulnerable Population: Theoretical Framework and Future Directions in Nursing.

PubMed

Son, Youn Jung; You, Mi Ae

2015-12-01

Effective transitional care is needed to improve the quality of life in older adult patients with chronic illness and avoid discontinuity of care and adverse events. The aim of this article is to provide an overview of the key features, broader implications, and the utility of Meleis' transition theory intended for the transitional care of older adults with chronic illnesses. We present the role of nurse in the context of transitional care and propose future directions to increase the quality of nursing care. The online databases Cumulative Index of Nursing and Allied Health Literature, MEDLINE, and Science Direct were searched for relevant literature published since 1970 along with textbooks regarding nursing theory. An evaluation of the usefulness of transition theory based on transitional care in older adult patients with chronic illnesses is provided. Healthy transition should be the expected standard of nursing care for older adults across all healthcare settings. Nurses need to contribute to the development of transitional care for vulnerable populations; however, transition theory needs to be enhanced through additional theoretical work and repeated evaluations of the applicability in areas of transitional care.

Associations Between Neighborhood Social Capital, Health Literacy, and Self-Rated Health Among People With Chronic Illness.

PubMed

Waverijn, Geeke; Heijmans, Monique; Spreeuwenberg, Peter; Groenewegen, Peter P

2016-01-01

Health literacy skills are important for health and self-management for people with chronic illness. Neighborhood social capital can provide resources, such as access to information and informal social control over unhealthy behavior. The benefit of these resources, and the access people have to these resources, might depend on levels of health literacy. We investigated whether neighborhood social capital is differentially related to the health of people with chronic illness according to health literacy skills. This study focused on health literacy skills in 4 domains related to the ability to access and understand health information and to the ability to perform self-management. We found a significant positive interaction between social capital and health literacy skills for accessing and understanding health information. This suggests that health literacy enhances people's ability to gain access to and use neighborhood resources to benefit health. There was no interaction effect between social capital and health literacy skills in the other 2 domains. More research is needed to investigate how people with chronic illness can benefit from knowledge, support, and other social resources for health and self-management also whether they have limited health literacy skills.

Growing up with an ill parent: An examination of family characteristics and parental illness features.

PubMed

Stoeckel, Maggie; Weissbrod, Carol

2015-12-01

Existing literature suggests that the children of ill parents are vulnerable to a variety of psychosocial difficulties such as depression and anxiety. The purpose of the current study is to investigate the impact of family characteristics (parental involvement, familial support, stress experienced as a result of parental illness) and parental illness features (severity, duration, recovery status, frequency of symptoms, course) on the psychosocial functioning (depression, anxiety, life satisfaction) of late adolescents who have grown up with an ill parent but no longer live with their parents. Participants were 71 college students with a parent who experienced a chronic medical condition while they were growing up. Participants provided information regarding family characteristics, parental illness features, and the impact of parental illness. Impact of parental illness was assessed using the Impact of Illness Scale. Participants also completed measures of depression, anxiety, and life satisfaction. Participants' reported impact of parent illness was positively correlated with participant depression and anxiety. Several family characteristics and parental illness features were significantly associated with participant psychosocial functioning. In particular, lower parental involvement was correlated with greater participant depression and anxiety, as well as lower life satisfaction. These findings extend our understanding of the impact of parental illness on late adolescents' psychosocial functioning. Results could have clinical applications for psychosocial interventions in children and families coping with chronic illness. (PsycINFO Database Record (c) 2015 APA, all rights reserved).