Use of an Online Clinical Process Support System as an Aid to Identification and Management of Developmental and Mental Health Problems.

PubMed

Howard, Barbara J; Sturner, Raymond

2017-12-01

To describe benefits and problems with screening and addressing developmental and behavioral problems in primary care and using an online clinical process support system as a solution. Screening has been found to have various implementation barriers including time costs, accuracy, workflow and knowledge of tools. In addition, training of clinicians in dealing with identified issues is lacking. Patients disclose more to and prefer computerized screening. An online clinical process support system (CHADIS) shows promise in addressing these issues. Use of a comprehensive panel of online pre-visit screens; linked decision support to provide moment-of-care training; and post-visit activities and resources for patient-specific education, monitoring and care coordination is an efficient way to make the entire process of screening and follow up care feasible in primary care. CHADIS fulfills these requirements and provides Maintenance of Certification credit to physicians as well as added income for screening efforts.

Indian Immigrant Parents of Children with Developmental Disabilities: Stressors and Support Systems

ERIC Educational Resources Information Center

John, Aesha; Bower, Kori; McCullough, Samie

2016-01-01

Although Asian Indians constitute one of the largest immigrant groups in the USA, research examining wellbeing among Indian immigrant families caring for a child with a developmental disability is relatively scarce. In response, this study examined the stressors and perceived quality of social support among Indian immigrant families of children…

Personalization, Self-Advocacy and Inclusion: An Evaluation of Parent-Initiated Supported Living Schemes for People with Intellectual and Developmental Disabilities in the Netherlands

ERIC Educational Resources Information Center

Reindl, Marie-Sol; Waltz, Mitzi; Schippers, Alice

2016-01-01

This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants,…

Associations between intensity of child welfare involvement and child development among young children in child welfare.

PubMed

Stahmer, Aubyn C; Hurlburt, Michael; Horwitz, Sarah McCue; Landsverk, John; Zhang, Jinjin; Leslie, Laurel K

2009-09-01

To examine developmental and behavioral status of children in child welfare (CW) over time, by intensity of CW involvement using a national probability sample. As part of the National Survey of Child and Adolescent Well-being (NSCAW), data were collected on 1,049 children 12-47 months old investigated by CW agencies for possible abuse or neglect. Analyses used descriptive statistics to characterize developmental and behavioral status across four domains (developmental/cognitive, language, adaptive functioning, and behavior) by intensity of CW involvement (in-home with CW services, in-home with no CW services or out-of-home care) over time. Multivariate analyses were used to examine the relationship between independent variables (age, gender, home environment, race/ethnicity, maltreatment history, intensity of CW involvement) and follow-up domain scores. On average, children improved in developmental/cognitive, communication/language status over time, but these improvements did not differ by intensity of CW involvement. Analyses revealed a positive relationship between the home environment and change in language and adaptive behavior standard scores over time, and few predictors of change in behavioral status. An interaction between intensity of CW involvement and initial developmental/cognitive status was present. Across domains, intensity of CW involvement does not appear to have a significant effect on change in developmental and behavioral status, although out-of-home care does have differential relationships with children's developmental/cognitive status for those with very low initial cognitive/developmental status. Facilitating development in children in CW may require supportive, enriched care environments both for children remaining at home and those in foster care. Toddler and preschool age children known to child welfare are likely to have difficulties with development whether they are removed from their homes or not. It would be helpful if child welfare workers were trained to screen for developmental, language, adaptive behavior and behavioral difficulties in children in foster care, and those remaining at home. Additional support for biological, foster, and kinship caregivers in encouraging development is important for the attainment of critical developmental skills, especially for children with developmental difficulties.

Recommendations for involving the family in developmental care of the NICU baby

PubMed Central

Craig, J W; Glick, C; Phillips, R; Hall, S L; Smith, J; Browne, J

2015-01-01

Family involvement is a key to realize the potential for long-lasting positive effects on physical, cognitive and psychosocial development of all babies, including those in the neonatal intensive care unit (NICU). Family-centered developmental care (FCDC) recognizes the family as vital members of the NICU health-care team. As such, families are integrated into decision-making processes and are collaborators in their baby's care. Through standardized use of FCDC principles in the NICU, a foundation is constructed to enhance the family's lifelong relationship with their child and optimize development of the baby. Recommendations are made for supporting parental roles as caregivers of their babies in the NICU, supporting NICU staff participation in FCDC and creating NICU policies that support this type of care. These recommendations are designed to meet the basic human needs of all babies, the special needs of hospitalized babies and the needs of families who are coping with the crisis of having a baby in the NICU. PMID:26597804

The Experiences and Perspectives of Japanese Substitute Caregivers and Maltreated Children: A Cultural-Developmental Approach to Child Welfare Practice

ERIC Educational Resources Information Center

Bamba, Sachiko

2010-01-01

This article describes the experiences and perspectives of child welfare workers and maltreated children living in Japanese state care. Japanese adults emphasize supporting children's emotional well-being and empowerment through developmentally and ecologically focused socialization strategies. One developmental goal articulated by caregivers of…

Family Caregivers of Adults with Intellectual and Developmental Disabilities: Outcomes Associated with U.S. Services and Supports

ERIC Educational Resources Information Center

Williamson, Heather J.; Perkins, Elizabeth A.

2014-01-01

Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver…

The direct support workforce in community supports to individuals with developmental disabilities: issues, implications, and promising practices.

PubMed

Hewitt, Amy; Larson, Sheryl

2007-01-01

Difficulties in finding, keeping, and ensuring the competence of the direct support workforce in community developmental disability services has long been a challenge for individuals, families, providers, and policy makers. Direct support staff recruitment, retention, and competence are widely reported as one of the most significant barriers to the sustainability, growth, and quality of community services for people with developmental disabilities (ANCOR [2001] State of the states report. Alexandria, VA: ANCOR; Colorado Department of Human Services, [2000] Response to Footnote 106 of the FY 2001 appropriations long bill: Capacity of the community services systems for persons with developmental disabilities in Colorado; Hewitt [2000] Dynamics of the workforce crisis. Presentation at the NASDDDS Fall meeting. Alexandria, VA). While long in existence, these challenges are ones of growing concern because the number of people demanding community services is increasing and the population of people from which to recruit workers is declining (Office of the Assistant Secretary for Planning and Evaluation [2006] The supply of direct support professionals serving individuals with intellectual disabilities and other developmental disabilities: Report to Congress. Washington, DC: Office of Disability, Aging and Long-Term Care Policy, ASPE, U.S. Department of Health and Human Services). As the service system moves towards consumer direction, managed care, and more noncategorical service delivery systems, the difficulties of providing for an adequate and well-prepared workforce to support people with developmental disabilities becomes more complex and multifaceted. The solutions to those challenges are also more complex. This article reviews the literature regarding the complexity of the direct support workforce crisis, the effects of this crisis on various stakeholder groups, promising practices designed to address the challenges, and the related practice and policy implications. (c) 2007 Wiley-Liss, Inc.

Guidelines for the Institutional Implementation of Developmental Neuroprotective Care in the NICU. Part B: Recommendations and Justification. A Joint Position Statement From the CANN, CAPWHN, NANN, and COINN.

PubMed

Milette, Isabelle; Martel, Marie-Josée; da Silva, Margarida Ribeiro; Coughlin McNeil, Mary

2017-06-01

The use of age-appropriate care as an organized framework for care delivery in the NICU is founded on the work of Heidelise Als, PhD, and her synactive theory of development. This theoretical construct has recently been advanced by the work of Gibbins and colleagues with the "universe of developmental care" conceptual model and developmental care core measures which were endorsed by the National Association of Neonatal Nurses in their age-appropriate care of premature infant guidelines as best-practice standards for the provision of high-quality care in the NICU. These guidelines were recently revised and expanded. In alignment with the Joint Commission's requirement for healthcare professionals to provide age-specific care across the lifespan, the core measures for developmental care suggest the necessary competencies for those caring for the premature and critically ill hospitalized infant. Further supported by the Primer Standards of Accreditation and Health Canada, the institutional implementation of these core measures require a strong framework for institutional operationalization presented in these guidelines. Part B will present the recommendations and justification of each steps behind the present guidelines to facilitate their implementation.

Optimism and benefit finding in parents of children with developmental disabilities: The role of positive reappraisal and social support.

PubMed

Slattery, Éadaoin; McMahon, Jennifer; Gallagher, Stephen

2017-06-01

Researchers have consistently documented the relationship between optimism and benefit finding; however, there is a dearth of research on the psychological mechanisms mediating their association. This cross-sectional study sought to elucidate the mediating role of positive reappraisal and social support in the optimism-benefit finding relationship in parents caring for children with developmental disabilities by testing a parallel multiple mediation model. One hundred and forty-six parents caring for children with developmental disabilities completed an online survey assessing optimism, positive reappraisal, social support and benefit finding. Optimism was not directly related to benefit finding but rather influenced it indirectly through positive reappraisal and social support. Specifically, higher levels of optimism predicted greater positive reappraisal and social support, which in turn led to greater benefit finding in parents. These results underscore the importance of targeting parents' perceptions of benefits through both positive reappraisal and social support in order to help them cope with the demands of the caregiving context. Copyright © 2017 Elsevier Ltd. All rights reserved.

Guidelines for the Institutional Implementation of Developmental Neuroprotective Care in the Neonatal Intensive Care Unit. Part A: Background and Rationale. A Joint Position Statement From the CANN, CAPWHN, NANN, and COINN.

PubMed

Milette, Isabelle; Martel, Marie-Josée; Ribeiro da Silva, Margarida; Coughlin McNeil, Mary

2017-06-01

The use of age-appropriate care as an organized framework for care delivery in the neonatal intensive care unit is founded on the work of Heidelise Als, PhD, and her synactive theory of development. This theoretical construct has recently been advanced by the work of Gibbins and colleagues with the "universe of developmental care" conceptual model and developmental care core measures which were endorsed by the National Association of Neonatal Nurses in their age-appropriate care of premature infant guidelines as best-practice standards for the provision of high-quality care in the neonatal intensive care unit. These guidelines were recently revised and expanded. In alignment with the Joint Commission's requirement for health-care professionals to provide age-specific care across the lifespan, the core measures for developmental care suggest the necessary competencies for those caring for the premature and critically ill hospitalized infant. Further supported by the Primer Standards of Accreditation and Health Canada, the institutional implementation of theses core measures requires a strong framework for institutional operationalization, presented in these guidelines. Part A of this article will present the background and rationale behind the present guidelines and their condensed table of recommendations.

Perspectives of US Direct Care Workers on the Grief Process of Persons with Intellectual and Developmental Disabilities: Implications for Practice

ERIC Educational Resources Information Center

Gray, Jennifer A.; Abendroth, Maryann

2016-01-01

Background: The study explored the grief process of persons with intellectual and developmental disabilities (PWIDDs) as perceived by direct care workers (DCWs) and how such workers can guide and support PWIDDs experiencing grief. Materials and Methods: A thematic analysis approach was used to examine data from nine focus groups with 60 DCWs from…

Developmental delay

USDA-ARS?s Scientific Manuscript database

Nutrition support is essential for the care of the child with developmental delay. After a thorough evaluation, an individualized intervention plan that accounts for the child’s nutrition status, feeding ability, and medical condition may be determined. Nutrition assessments may be performed at leas...

Parent and Youth Priorities during the Transition to Adulthood for Youth with Special Health Care Needs and Developmental Disability

PubMed Central

Rehm, Roberta S.; Fuentes-Afflick, Elena; Fisher, Lucille T.; Chesla, Catherine A.

2014-01-01

Families undertake extensive planning during transition to adulthood so youth with concomitant special health care needs and developmental disabilities will have a long-term high quality of life. Findings from an interpretive field study involving 64 youth and their parents indicated that the meaning of adulthood was functioning as independently as possible with appropriate supports. Parental priorities included protecting health, assuring safety and security in multiple realms, finding meaningful activities after high school, and establishing supportive social relationships. These priorities demonstrated the need to broaden usual health care transition goals that focus on finding adult providers and optimizing self-management. PMID:22869218

Implementation of Medicaid Managed Long-Term Services and Supports for Adults with Intellectual And/Or Developmental Disabilities in Kansas

ERIC Educational Resources Information Center

Williamson, Heather J.; Perkins, Elizabeth A.; Levin, Bruce L.; Baldwin, Julie A.; Lulinski, Amie; Armstrong, Mary I.; Massey, Oliver T.

2017-01-01

Many adults with intellectual and/or developmental disabilities (IDD) can access health and long-term services and supports (LTSS) through Medicaid. States are reforming their Medicaid LTSS programs from a fee-for-service model to a Medicaid managed LTSS (MLTSS) approach, anticipating improved quality of care and reduced costs, although there is…

Developing culturally responsive approaches with Southeast Asian American families experiencing developmental disabilities.

PubMed

Baker, Dian L; Miller, Elizabeth; Dang, Michelle T; Yaangh, Chiem-Seng; Hansen, Robin L

2010-12-01

Southeast Asian American families are underrepresented among recipients of special education and social services for people with developmental disabilities. Our aims were to use a community-based participatory research approach to examine Hmong and Mien families' perceptions of developmental disabilities and understand barriers to and facilitators of service provision among families experiencing developmental disabilities. We describe here a case study of a successful attempt to engage marginalized and underserved communities to understand their needs to improve access and services for persons with developmental disabilities. We conducted 2 focus groups with 11 key informants and 1 focus group with 10 family members of persons with developmental disabilities, as well as in-depth interviews with 3 shamans. Using a thematic analysis approach, we coded notes and transcripts to assess community members' understanding of developmental disabilities, experiences negotiating educational and health care systems, and barriers to high-quality care. A predominant theme was the perception that reliance on governmental support services is not appropriate. Common barriers identified included lack of accurate information, language difficulties, lack of trust, and limited outreach. These perceptions and barriers, combined with limited access to services, interfere with community acceptance and use of available support services. Despite these barriers, participants indicated that with education, outreach, and culturally responsive support, families would likely accept services. Community-based participatory methods are effective for eliciting root causes of health inequities in marginalized communities. Outreach to community-based organizations and an inclusive research practice identified social and cultural reasons for low service uptake and provided a pathway for the community to improve services for persons with developmental disabilities.

Teamwork in the Neonatal Intensive Care Unit

ERIC Educational Resources Information Center

Barbosa, Vanessa Maziero

2013-01-01

Medical and technological advances in neonatology have prompted the initiation and expansion of developmentally supportive services for newborns and have incorporated rehabilitation professionals into the neonatal intensive care unit (NICU) multidisciplinary team. Availability of therapists specialized in the care of neonates, the roles of…

Direct Care Workers' Experiences of Grief and Needs for Support

ERIC Educational Resources Information Center

Gray, Jennifer A.; Kim, Jinsook

2017-01-01

Background: A paucity of information is available on direct care workers' (DCWs') experiences with loss when their clients (people with intellectual and developmental disabilities [I/DD]) die. This study explored DCWs' grief experiences, their coping methods and their needs for support. Methods: A thematic analysis approach was used to examine…

Level of NICU Quality of Developmental Care and Neurobehavioral Performance in Very Preterm Infants

PubMed Central

Del Prete, Alberto; Bellù, Roberto; Tronick, Ed; Borgatti, Renato

2012-01-01

OBJECTIVE: To examine the relation between the neurobehavior of very preterm infants and the level of NICU quality of developmental care. METHODS: The neurobehavior of 178 very preterm infants (gestational age ≤29 weeks and/or birth weight ≤1500 g) from 25 NICUs participating in a large multicenter, longitudinal study (Neonatal Adequate Care for Quality of Life, NEO-ACQUA) was examined with a standardized neurobehavioral assessment, the NICU Network Neurobehavioral Scale (NNNS). A questionnaire, the NEO-ACQUA Quality of Care Checklist was used to evaluate the level of developmental care in each of the NICUs. A factor analyses applied to NEO-ACQUA Quality of Care Checklist produced 2 main factors: (1) the infant-centered care (ICC) index, which measures parents’ involvement in the care of their infant and other developmentally oriented care interventions, and (2) the infant pain management (IPM) index, which measures the NICU approach to and the procedures used for reducing infant pain. The relations between NNNS neurobehavioral scores and the 2 indexes were evaluated. RESULTS: Infants from NICUs with high scores on the ICC evidenced higher attention and regulation, less excitability and hypotonicity, and lower stress/abstinence NNNS scores than infants from low-care units. Infants from NICUs with high scores on the IPM evidenced higher attention and arousal, lower lethargy and nonoptimal reflexes NNNS scores than preterm infants from low-scoring NICUs. CONCLUSIONS: Very preterm infant neurobehavior was associated with higher levels of developmental care both in ICC and in IPM, suggesting that these practices support better neurobehavioral stability. PMID:22492762

Use of a training program to enhance NICU nurses' cognitive abilities for assessing preterm infant behaviors and offering supportive interventions.

PubMed

Liaw, Jen-Jiuan

2003-06-01

This study tested the use of a developmentally supportive care (DSC) training program in the form of videotaped and personalized instruction to increase nurses' cognitive abilities for assessing preterm infant behavioral signals and offering supportive care. The study used a two-group pre-test post-test quasi-experimental repeated measures design. The participants were 25 NICU nurses, 13 in the intervention group, and 12 in the control group. An instrument developed for the purpose of the study was a video test that measured the effectiveness of the DSC training. The video test questionnaires were administered to the participants twice with an interval of four weeks. ANCOVA controlling the baseline scores was used for data analysis. In general, the results support the hypothesis that nurses' cognitive abilities were enhanced after the DSC training. The increase in nurses' cognitive abilities is the prerequisite for behavioral change, based on the assumptions of Bandura's Social Cognitive Learning Theory (Bandura, 1986). As nurses' cognitive abilities increased, it would be possible that nurse behaviors in taking care of these preterm infants might change. Therefore, the author recommends that in order to improve NICU care quality and the outcomes of preterm infants, the concepts of developmentally supportive care be incorporated into NICU caregiving practice by educating nurses.

Family Care of Developmentally Disabled Members: Conference Proceedings. Proceedings of the Conference Sponsored by the Information and Technical Assistance Project in Deinstitutionalization, Department of Psychoeducational Studies (University of Minnesota, June 19-20, 1978).

ERIC Educational Resources Information Center

Bruininks, Robert H., Ed.; Krantz, Gordon C., Ed.

Ten papers are presented from a 1979 conference on services for families of developmentally disabled persons. R. Bruininks ("The Needs of Families") addresses aspects of direct and support services to families. "Social and Psychological Factors in Family Care" by C. Horejsi suggests that a family's or individual's ability to deal successfully with…

The sexuality of young women with intellectual and developmental disabilities: A neglected focus in the American foster care system.

PubMed

Ballan, Michelle S; Freyer, Molly Burke

2017-07-01

Youths with intellectual and developmental disabilities (ID/DD) are overrepresented in the American foster care system and experience heightened rates of pregnancy compared to their nondisabled peers. Yet limited information is known about sexually active or pregnant young women with ID/DD in foster care. Consequently, important healthcare needs of this population are not adequately addressed. This article explores sexuality education and sexual healthcare for female adolescents in foster care with ID/DD and recommends practice guidelines to support and prepare their emergent sexual development. Copyright © 2017 Elsevier Inc. All rights reserved.

Caring for Infants and Toddlers in Groups: Developmentally Appropriate Practice.

ERIC Educational Resources Information Center

Lally, J. Ronald; Griffin, Abbey; Fenichel, Emily; Segal, Marilyn; Szanton, Eleanor; Weissbourd, Bernice

Noting that high quality group care for infants and toddlers can enrich children's early experience and provide critical support to their families, this guide is designed to help caregivers and other interested parties in early care and education recognize and communicate the skills and knowledge needed to offer nurturing group care that supports…

The Newborn Individualized Developmental Care and Assessment Program (NIDCAP) with Kangaroo Mother Care (KMC): Comprehensive Care for Preterm Infants

PubMed Central

Als, Heidelise; McAnulty, Gloria B.

2014-01-01

State-of-the-art Newborn Intensive Care Units (NICUs), instrumental in the survival of high-risk and ever-earlier-born preterm infants, often have costly human repercussions. The developmental sequelae of newborn intensive care are largely misunderstood. Developed countries eager to export their technologies must also transfer the knowledge-base that encompasses all high-risk and preterm infants’ personhood as well as the neuro-essential importance of their parents. Without such understanding, the best medical care, while assuring survival jeopardizes infants’ long-term potential and deprives parents of their critical role. Exchanging the womb for the NICU environment at a time of rapid brain growth compromises preterm infants’ early development, which results in long-term physical and mental health problems and developmental disabilities. The Newborn Individualized Developmental Care and Assessment Program (NIDCAP) aims to prevent the iatrogenic sequelae of intensive care and to maintain the intimate connection between parent and infant, one expression of which is Kangaroo Mother Care. NIDCAP embeds the infant in the natural parent niche, avoids over-stimulation, stress, pain, and isolation while it supports self-regulation, competence, and goal orientation. Research demonstrates that NIDCAP improves brain development, functional competence, health, and life quality. It is cost effective, humane, and ethical, and promises to become the standard for all NICU care. PMID:25473384

The Newborn Individualized Developmental Care and Assessment Program (NIDCAP) with Kangaroo Mother Care (KMC): Comprehensive Care for Preterm Infants.

PubMed

Als, Heidelise; McAnulty, Gloria B

2011-08-01

State-of-the-art Newborn Intensive Care Units (NICUs), instrumental in the survival of high-risk and ever-earlier-born preterm infants, often have costly human repercussions. The developmental sequelae of newborn intensive care are largely misunderstood. Developed countries eager to export their technologies must also transfer the knowledge-base that encompasses all high-risk and preterm infants' personhood as well as the neuro-essential importance of their parents. Without such understanding, the best medical care, while assuring survival jeopardizes infants' long-term potential and deprives parents of their critical role. Exchanging the womb for the NICU environment at a time of rapid brain growth compromises preterm infants' early development, which results in long-term physical and mental health problems and developmental disabilities. The Newborn Individualized Developmental Care and Assessment Program (NIDCAP) aims to prevent the iatrogenic sequelae of intensive care and to maintain the intimate connection between parent and infant, one expression of which is Kangaroo Mother Care. NIDCAP embeds the infant in the natural parent niche, avoids over-stimulation, stress, pain, and isolation while it supports self-regulation, competence, and goal orientation. Research demonstrates that NIDCAP improves brain development, functional competence, health, and life quality. It is cost effective, humane, and ethical, and promises to become the standard for all NICU care.

Prolonged Hospital Discharge for Children with Technology Dependency: A Source of Health Care Disparities.

PubMed

Sobotka, Sarah A; Agrawal, Rishi K; Msall, Michael E

2017-10-01

Children with ventilator assistance have been supported in living at home since 1981 when parental advocacy ushered in a change to Medicaid policy. As the population of children who use medical technology such as long-term ventilation increases, we must critically evaluate our systems for preparing families for home life. Discharge delays persist in the modern era because of fragmentation between hospital and home systems. These discharge delays result in children spending time in less developmentally rich environments, further exacerbating the health and development disparities of children with complex disabilities. In this article, we discuss the complication of hospital discharge and how it contributes to health and developmental disparities. We also describe a hospital-to-home transitional care model, which presents a home-like environment to provide developmental support while focusing on parental training, home nursing, and public-funding arrangements. [Pediatr Ann. 2017;46(10):e365-e370.]. Copyright 2017, SLACK Incorporated.

A Non-Institutional Society for People with Developmental Disability in Norway.

ERIC Educational Resources Information Center

Meyer, Jan

2003-01-01

This article discusses how the intentions of the Norwegian commitment to create a "non-institutional society" with people with developmental disabilities living as fellow citizens is reflected in everyday life and support practices. The passage of the Norwegian Reform Act that required the end of institutional care is recounted.…

State Health Care Financing Strategies for Children with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Bachman, Sara S.; Comeau, Margaret; Tobias, Carol; Allen, Deborah; Epstein, Susan; Jantz, Kathryn; Honberg, Lynda

2012-01-01

We provide the first descriptive summary of selected programs developed to help expand the scope of coverage, mitigate family financial hardship, and provide health and support services that children with intellectual and developmental disabilities need to maximize their functional status and quality of life. State financing initiatives were…

Congregational Participation of a National Sample of Adults with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Carter, Erik W.; Kleinert, Harold L.; LoBianco, Tony F.; Sheppard-­Jones, Kathleen; Butler, Laura N.; Tyree, Milton S.

2015-01-01

Supporting people with intellectual and developmental disabilities (IDD) to thrive requires careful consideration of multiple avenues of community involvement. Yet little attention has focused on the place of faith community participation in the lives of adults with IDD. We examined attendance at religious services using National Core Indicator…

Juggling and Struggling: A Preliminary Work-Life Study of Mothers with Adolescents Who Have Developmental Disabilities

ERIC Educational Resources Information Center

Parish, Susan L.

2006-01-01

A focus group study was conducted to develop an understanding of the experiences of mothers who are trying to balance employment with caring for an adolescent with developmental disabilities. Mothers reported facing considerable difficulties balancing work and caregiving responsibilities because support services rapidly declined when their child…

Status of Family Support Services and Spending in the United States.

ERIC Educational Resources Information Center

Parish, Susan L.; Braddock, David; Hemp, Richard; Rizzolo, Mary C.

2000-01-01

Analysis of data on family support services and spending for individuals with developmental disabilities presents information on cash subsidy payments, respite care, and other family support. A graph shows U.S. spending for family support, 1986-1998. Additional tables break down subsidy spending for family support services by state in 1998 and…

Promising Outcomes in Teen Mothers Enrolled in a School-Based Parent Support Program and Child Care Center

ERIC Educational Resources Information Center

Sadler, Lois S.; Swartz, Martha K.; Ryan-Krause, Patricia; Seitz, Victoria; Meadows-Oliver, Mikki; Grey, Margaret; Clemmens, Donna A.

2007-01-01

Background: This study described a cohort of teen mothers and their children attending an urban high school with a parent support program and school-based child care center. Specific aims of the study were to describe maternal characteristics and outcomes, and child developmental and health outcomes. Methods: A volunteer sample of 65 adolescent…

Financial well-being of single, working-age mothers of children with developmental disabilities.

PubMed

Parish, Susan L; Rose, Roderick A; Swaine, Jamie G; Dababnah, Sarah; Mayra, Ellen Tracy

2012-09-01

Understanding the financial well-being of single mothers who care for children with developmental disabilities is important to ensure that public policies can be effectively targeted to support these vulnerable families. The authors analyze data from the Survey of Income and Program Participation to describe income poverty, asset poverty, income, net worth, and liquid assets of U.S. single, working-age mothers (n  =  242) of children and adult children with developmental disabilities. The well-being of these mothers was compared to the situation of married mothers of children with developmental disabilities (n  =  345) and of single mothers who did not have children with developmental disabilities (n  =  6,547). Compared with both married mothers of children with developmental disabilities and single mothers without children with developmental disabilities, single mothers of children with developmental disabilities had markedly worse financial well-being across a range of income- and asset-based measures. Single mothers caring for children with developmental disabilities face adverse financial well-being as compared with other mothers. Policy makers should consider targeted measures to improve the financial well-being of these parents.

Child Care Center Design & the Potential of Architecture.

ERIC Educational Resources Information Center

Abbott, Carl; Abbott, Cooper

This paper discusses the impact of layout and design of child care centers on the education of young children. It asserts that child care facilities must be designed to support and stimulate children's natural developmental processes, providing both direct and indirect educational opportunities. The paper discusses the stages of the design process…

Perspectives of US Direct Care Workers on the Grief Process of Persons with Intellectual and Developmental Disabilities: Implications for Practice.

PubMed

Gray, Jennifer A; Abendroth, Maryann

2016-09-01

The study explored the grief process of persons with intellectual and developmental disabilities (PWIDDs) as perceived by direct care workers (DCWs) and how such workers can guide and support PWIDDs experiencing grief. A thematic analysis approach was used to examine data from nine focus groups with 60 DCWs from five community-based organizations. Findings were supported in the context of seminal grief and bereavement theories. Three themes (i.e. reactions to loss, processing the loss and incorporating the loss) and related subthemes emerged from the data. PWIDDs are susceptible to traumatic grief, and DCWs are often key witnesses to such experiences. DCWs' perspectives can guide the development of grief and bereavement training which can lead to more tailored support systems. © 2015 John Wiley & Sons Ltd.

The Lunar CELSS Test Module

NASA Technical Reports Server (NTRS)

Hoehn, Alexander; Gomez, Shawn; Luttges, Marvin W.

1992-01-01

The evolutionarily-developed Lunar Controlled Ecological Life Support System (CELSS) Test Module presented can address questions concerning long-term human presence-related issues both at LEO and in the lunar environment. By achieving well-defined research goals at each of numerous developmental stages (each economically modest), easily justifiable operations can be undertaken. Attention is given to the possibility of maximizing non-NASA involvement in these CELSS developmental efforts via the careful definability and modest risk of each developmental stage.

Quality Group Home Care for Adults with Developmental Disabilities and/or Mental Health Disorders: Yearning for Understanding, Security and Freedom.

PubMed

Shipton, Leah; Lashewicz, Bonnie M

2017-09-01

The purpose of this study was to uncover and understand factors influencing quality of care received by adults with developmental disabilities and/or mental health disorders living in group homes. The present authors conducted a secondary analysis of data from nine focus group discussions with adults with developmental disabilities and/or mental health disorders, and their family and paid caregivers (N = 52). To focus the analysis, the present authors drew on the research literature to craft a model of quality of group home care using concepts of social inclusion and self-determination, and corresponding staff approaches that include active support and person-centred care. Social inclusion and self-determination for adults in group homes are facilitated by staff approaches and manifest in residents being understood and experiencing security and freedom. The present authors offer recommendations for group home resources, training, communication and outcome measures that promote residents' being understood and experiencing security and freedom. © 2016 John Wiley & Sons Ltd.

Variation by Disability in State Predictors of Medicaid 1915C Waiver Use and Expenditures

ERIC Educational Resources Information Center

Miller, Nancy A.; Kitchener, Martin; Elder, Keith T.; Kang, Yu; Rubin, Andrea; Harrington, Charlene

2005-01-01

Purpose: States are increasingly using the Medicaid 1915c waiver program to provide community-based long-term care. A substantially greater share of long-term-care dollars supports community-based care for individuals with intellectual and developmental disabilities, relative to older and working-age persons with primarily physical disabilities.…

Rethinking Respite Policy for People with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Chan, Jeffrey; Merriman, Brian; Parmenter, Trevor; Stancliffe, Roger

2012-01-01

Respite care is one of a range of support services typically available to carers of people with dependencies who need a break from caring, and the factors that influence the need for respite care are generally similar irrespective of the nature of the dependencies. Hence, the expectations of families potentially have policy and service provision…

Mobile social network services for families with children with developmental disabilities.

PubMed

Chou, Li-Der; Lai, Nien-Hwa; Chen, Yen-Wen; Chang, Yao-Jen; Yang, Jyun-Yan; Huang, Lien-Fu; Chiang, Wen-Ling; Chiu, Hung-Yi; Shin, Haw-Yun

2011-07-01

As Internet technologies evolve, their applications have changed various aspects of human life. Here, we attempt to examine their potential impact on services for families with developmentally delayed children. Our research is thus designed to utilize wireless mobile communication technologies, location services, and search technology in an effort to match families of specific needs with potential care providers. Based on the investigation conducted by our counselors, this paper describes a platform for smooth communication between professional communities and families with children with developmental disabilities (CDD). This research also looks into the impact of management of mobile social network services and training on the operation of these services. Interaction opportunities, care, and support to families with CDD are introduced.

The first year: the support needs of parents caring for a child with an intellectual disability.

PubMed

Douglas, Tracy; Redley, Bernice; Ottmann, Goetz

2016-11-01

To describe the support needs of parents caring for a child with an intellectual disability in the first year of life. Parents of children with intellectual disabilities face significant challenges during the first year of their child's life which is an important developmental period not previously addressed in the literature. The provision of support by health professionals, particularly nurses and midwives, during this crucial period can impact on parental well-being and on the health and developmental outcomes of their children. However, parents often feel unsupported. The study used a qualitative descriptive methodology. Semi-structured interviews were conducted with parents of eleven children with an intellectual disability in Victoria, Australia, during 2014. Interviews were digitally recorded, transcribed verbatim and analysed using thematic data analysis. Three key areas of support need were identified to assist parents to provide effective care for their child with an intellectual disability in the first year of life: (1) emotional support as parents adjusted to their role of caring for a child with an intellectual disability; (2) information support as they embarked on a quest for knowledge; and (3) support to facilitate their connection to peer networks. The findings highlighted inconsistent provision of support for parents. This study informs health professionals about how to provide holistic, timely support to parents of children with intellectual disabilities in the first year of life. There is an urgent need to review how nurses and midwives can provide relevant support that is responsive to parents' needs. © 2016 John Wiley & Sons Ltd.

Michigan's Family Support and Family Subsidy Programs. Remarks for the New Jersey Council of Executive-ARC.

ERIC Educational Resources Information Center

Arneaud, Susan

"Family support" describes the philosophy of the Michigan Public Mental Health System. Family Support is also the name of a Michigan program that provides the supports that parents of children with developmental disabilities need to keep their families together. Services include respite care, client services management, parent and…

The Interest-Driven Pursuits of 15 Year Olds: "Sparks" and Their Association with Caring Relationships and Developmental Outcomes

ERIC Educational Resources Information Center

Ben-Eliyahu, Adar; Rhodes, Jean E.; Scales, Peter

2014-01-01

In this study, we examined the characteristics of adolescents' deep interests or "sparks," the role of relationships in supporting the development of sparks, and whether having a spark was associated with positive developmental outcomes. Participants included 1,860 15 years olds from across the United States who participated in the…

The Impact of Cancer and its Treatment on the Growth and Development of the Pediatric Patient.

PubMed

Brand, Sarah; Wolfe, Joanne; Samsel, Chase

2017-01-01

Cancer treatment can have profound effects on the growth and development of pediatric patients. Different models of psychosocial development and behavioral treatment approaches aid children receiving medical treatment. Providing education, anticipatory guidance, and individualized support to child and their families is a psychosocial standard. Clarify the different models of psychosocial development and applicable psychosocial interventions to better prepare and tailor cancer treatment to pediatric patients. Authors reviewed existing evidenced-based literature in oncology, psychology, developmental, and psychiatric while drawing on case examples and expert knowledge to illustrate the impact of cancer treatment on pediatric patients, analyze developmentally individualized needs, and describe facilitative interventions. Pediatric patients of all ages cope and adjust better to all phases of treatment when their care is delivered in a developmentally-informed and psychosocially thoughtful way. Providers can comprehensively prepare their patients and families for treatment better by utilizing a psychosocially- and developmentally-informed framework while meeting individualized unique needs of patients. An integrated multidisciplinary psychosocial support team is facilitative in anticipating and meeting the needs of pediatric cancer patients and has recently become a psychosocial standard of care. Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.org.

Supporting Resilience in Foster Families: A Model for Program Design that Supports Recruitment, Retention, and Satisfaction of Foster Families Who Care for Infants with Prenatal Substance Exposure

ERIC Educational Resources Information Center

Marcellus, Lenora

2010-01-01

As the health, social, and developmental needs of infants in foster care become more complex, foster families are challenged to develop specialized knowledge to effectively address these needs. The goal of this qualitative research study was to identify the process of becoming a foster family and providing family foster caregiving within the…

Using Pediatric Visits to Support Children and Families: Ten Positive Outcomes From HealthySteps

ERIC Educational Resources Information Center

MacLaughlin, Sarah; Gillespie, Linda; Parlakian, Rebecca

2017-01-01

Pediatric health care practices are ideal settings within which to provide vital screenings, support, and parent education to families of infants and toddlers. HealthySteps (HS) uses an integrated, relationship-based approach to deliver a range of services and supports such as anticipatory guidance, developmental and behavioral screenings,…

Juggling and struggling: a preliminary work-life study of mothers with adolescents who have developmental disabilities.

PubMed

Parish, Susan L

2006-12-01

A focus group study was conducted to develop an understanding of the experiences of mothers who are trying to balance employment with caring for an adolescent with developmental disabilities. Mothers reported facing considerable difficulties balancing work and caregiving responsibilities because support services rapidly declined when their child reached adolescence. Service cuts were related to the fact that adolescents are expected to be able to care for themselves, despite the fact that for many adolescents with disabilities, this is not possible. The mothers also reported that the preponderance of the responsibility for arranging care for their children was theirs and was not shouldered by their partners. Policy implications are discussed.

Developmental Screening of Refugees: A Qualitative Study

PubMed Central

Moore, Jessica A.; Welch, Therese R.; Halterman, Jill S.; Hyman, Susan L.

2016-01-01

BACKGROUND AND OBJECTIVES: Refugee children are at high developmental risk due to dislocation and deprivation. Standardized developmental screening in this diverse population is challenging. We used the Health Belief Model to guide key-informant interviews and focus groups with medical interpreters, health care providers, community collaborators, and refugee parents to explore key elements needed for developmental screening. Cultural and community-specific values and practices related to child development and barriers and facilitators to screening were examined. METHODS: We conducted 19 interviews and 2 focus groups involving 16 Bhutanese-Nepali, Burmese, Iraqi, and Somali participants, 7 community collaborators, and 6 providers from the Center for Refugee Health in Rochester, New York. Subjects were identified through purposive sampling until data saturation. Interviews were recorded, coded, and analyzed using a qualitative framework technique. RESULTS: Twenty-one themes in 4 domains were identified: values/beliefs about development/disability, practices around development/disability, the refugee experience, and feedback specific to the Parents’ Evaluation of Developmental Status screen. Most participants denied a word for “development” in their primary language and reported limited awareness of developmental milestones. Concern was unlikely unless speech or behavior problems were present. Physical disabilities were recognized but not seen as problematic. Perceived barriers to identification of delays included limited education, poor healthcare knowledge, language, and traditional healing practices. Facilitators included community navigators, trust in health care providers, in-person interpretation, visual supports, and education about child development. CONCLUSIONS: Refugee perspectives on child development may influence a parent’s recognition of and response to developmental concerns. Despite challenges, standardized screening was supported. PMID:27527798

Developmental Screening of Refugees: A Qualitative Study.

PubMed

Kroening, Abigail L H; Moore, Jessica A; Welch, Therese R; Halterman, Jill S; Hyman, Susan L

2016-09-01

Refugee children are at high developmental risk due to dislocation and deprivation. Standardized developmental screening in this diverse population is challenging. We used the Health Belief Model to guide key-informant interviews and focus groups with medical interpreters, health care providers, community collaborators, and refugee parents to explore key elements needed for developmental screening. Cultural and community-specific values and practices related to child development and barriers and facilitators to screening were examined. We conducted 19 interviews and 2 focus groups involving 16 Bhutanese-Nepali, Burmese, Iraqi, and Somali participants, 7 community collaborators, and 6 providers from the Center for Refugee Health in Rochester, New York. Subjects were identified through purposive sampling until data saturation. Interviews were recorded, coded, and analyzed using a qualitative framework technique. Twenty-one themes in 4 domains were identified: values/beliefs about development/disability, practices around development/disability, the refugee experience, and feedback specific to the Parents' Evaluation of Developmental Status screen. Most participants denied a word for "development" in their primary language and reported limited awareness of developmental milestones. Concern was unlikely unless speech or behavior problems were present. Physical disabilities were recognized but not seen as problematic. Perceived barriers to identification of delays included limited education, poor healthcare knowledge, language, and traditional healing practices. Facilitators included community navigators, trust in health care providers, in-person interpretation, visual supports, and education about child development. Refugee perspectives on child development may influence a parent's recognition of and response to developmental concerns. Despite challenges, standardized screening was supported. Copyright © 2016 by the American Academy of Pediatrics.

Recommendations for enhancing psychosocial support of NICU parents through staff education and support

PubMed Central

Hall, S L; Cross, J; Selix, N W; Patterson, C; Segre, L; Chuffo-Siewert, R; Geller, P A; Martin, M L

2015-01-01

Providing psychosocial support to parents whose infants are hospitalized in the neonatal intensive care unit (NICU) can improve parents' functioning as well as their relationships with their babies. Yet, few NICUs offer staff education that teaches optimal methods of communication with parents in distress. Limited staff education in how to best provide psychosocial support to families is one factor that may render those who work in the NICU at risk for burnout, compassion fatigue and secondary traumatic stress syndrome. Staff who develop burnout may have further reduced ability to provide effective support to parents and babies. Recommendations for providing NICU staff with education and support are discussed. The goal is to deliver care that exemplifies the belief that providing psychosocial care and support to the family is equal in importance to providing medical care and developmental support to the baby. PMID:26597803

Influenza Weekly Surveillance Reports - Delaware Health and Social Services

Science.gov Websites

Department of Health and Social Services (DHSS) DHSS Home Divisions Aging and Adults with Physical Disabilities Child Support Services Delaware Health Care Commission Developmental Disabilities Services Health Care Quality Management Services Medicaid & Medical Assistance Public Health Social Services State

DPH Disease Information: Tuberculosis - Delaware Health and Social Services

Science.gov Websites

Department of Health and Social Services (DHSS) DHSS Home Divisions Aging and Adults with Physical Disabilities Child Support Services Delaware Health Care Commission Developmental Disabilities Services Health Care Quality Management Services Medicaid & Medical Assistance Public Health Social Services State

DPH Healthy Living Information: Immunizations - Delaware Health and Social

Science.gov Websites

2018: 103 Department of Health and Social Services (DHSS) DHSS Home Divisions Aging and Adults with Physical Disabilities Child Support Services Delaware Health Care Commission Developmental Disabilities Services Health Care Quality Management Services Medicaid & Medical Assistance Public Health Social

Caring for children and youth from Canadian military families: Special considerations

PubMed Central

Rowan-Legg, Anne

2017-01-01

Abstract Military families experience a number of life stressors, such as frequent geographical moves, long periods of separation within the family, geographic isolation from extended family support systems and deployments to high-risk areas of the world. While children and youth in military families experience all the same developmental and motivational trajectories as their civilian counterparts, they must also contend with more unusual developmental pressures and stressors placed on them by the unique demands of military life. The effects of the military life on families and children are beginning to be recognized and characterized more fully. Understanding the unique concerns of children and youth from military families and mobilizing specific resources to support them are critical for meeting the health care needs of this population. PMID:29479192

Rates of detection of developmental problems at the 18-month well-baby visit by family physicians' using four evidence-based screening tools compared to usual care: a randomized controlled trial.

PubMed

Thomas, R E; Spragins, W; Mazloum, G; Cronkhite, M; Maru, G

2016-05-01

Early and regular developmental screening can improve children's development through early intervention but is insufficiently used. Most developmental problems are readily evident at the 18-month well-baby visit. This trial's purpose is to: (1) compare identification rates of developmental problems by GPs/family physicians using four evidence-based tools with non-evidence based screening, and (2) ascertain whether the four tools can be completed in 10-min pre-visit on a computer. We compared two approaches to early identification via random assignment of 54 families to either: 'usual care' (informal judgment including ad-hoc milestones, n = 25); or (2) 'Evidence-based' care (use of four validated, accurate screening tools, n = 29), including: the Parents' Evaluation of Developmental Status (PEDS), the PEDS-Developmental Milestones (PEDS-DM), the Modified Checklist for Autism in Toddlers (M-CHAT) and PHQ9 (maternal depression). In the 'usual care' group four (16%) and in the evidence-based tools group 18 (62%) were identified as having a possible developmental problem. In the evidence-based tools group three infants were to be recalled at 24 months for language checks (no specialist referrals made). In the 'usual care' group four problems were identified: one child was referred for speech therapy, two to return to check language at 24 months and a mother to discuss depression. All forms were completed on-line within 10 min. Despite higher early detection rates in the evidence-based care group, there were no differences in referral rates between evidence-based and usual-care groups. This suggests that clinicians: (1) override evidence-based screening results with informal judgment; and/or (2) need assistance understanding test results and making referrals. Possible solutions are improve the quality of information obtained from the screening process, improved training of physicians, improved support for individual practices and acceptance by the regional health authority for overall responsibility for screening and creation of a comprehensive network. © 2016 John Wiley & Sons Ltd.

Parental experiences of a developmentally focused care program for infants and children during prolonged hospitalization.

PubMed

So, Stephanie; Rogers, Alaine; Patterson, Catherine; Drew, Wendy; Maxwell, Julia; Darch, Jane; Hoyle, Carolyn; Patterson, Sarah; Pollock-BarZiv, Stacey

2014-06-01

This study investigates parental experiences and perceptions of the care received during their child's prolonged hospitalization. It relates this care to the Beanstalk Program (BP), a develop-mentally focused care program provided to these families within an acute care hospital setting. A total of 20 parents (of children hospitalized between 1-15 months) completed the Measures of Processes of Care (MPOC-20) with additional questions regarding the BP. Scores rate the extent of the health-care provider's behaviour as perceived by the family, ranging from 'to a great extent' (7) to 'never' (1). Parents rated Respectful and Supportive Care (6.33) as highest, while Providing General Information (5.65) was rated lowest. Eleven parents participated in a follow-up, qualitative, semi-structured interview. Interview data generated key themes: (a) parents strive for positive and normal experiences for their child within the hospital environment; (b) parents value the focus on child development in the midst of their child's complex medical care; and (c) appropriate developmentally focused education helps parents shift from feeling overwhelmed with a medically ill child to instilling feelings of confidence and empowerment to care for their child and transition home. These results emphasize the importance of enhancing child development for hospitalized infants and young children through programs such as the BP. © The Author(s) 2013.

Individualized Health Care Plans: Supporting Children With Chronic Conditions in the Classroom

ERIC Educational Resources Information Center

Hopkins, Amanda F.; Hughes, Mary-alayne

2016-01-01

Due to the major advances in technology and the sciences, advances in the medical treatment options for children with chronic conditions are being made at an astonishing rate. In the health care field, "children with chronic conditions" is a generic phrase that typically refers to children with physical, developmental, behavioral, or…

Relationship-Based Developmentally Supportive Approach to Infant Childcare Practice

ERIC Educational Resources Information Center

Kim, Yunhee

2016-01-01

Caregivers' warm, sensitive, and attentive interactions with their children have been widely considered key indicators of infant-caregiver interaction quality in childcare contexts. The primary purpose of this study was to explore infant's daily experiences and the characteristics of relationship-based supportive care practices in a childcare…

Contraceptive Provision to Postpartum Women With Intellectual and Developmental Disabilities: A Population-Based Cohort Study.

PubMed

Brown, Hilary K; Kirkham, Yolanda A; Lunsky, Yona; Cobigo, Virginie; Vigod, Simone N

2018-05-29

Women with intellectual and developmental disabilities who experience pregnancy, like all women, require postpartum care that supports their contraceptive knowledge and decision making. Yet, little is known about the postpartum contraceptive care these women receive, or how it compares with care given to other women. A population-based study using linked health and social services administrative data examined provision of postpartum contraceptive care to women who had a live birth in Ontario, Canada, in 2002-2014 and were beneficiaries of Ontario's publicly funded drug plan. Modified Poisson regression was used to compare care between 1,181 women with and 36,259 women without intellectual and developmental disabilities. Outcomes were provision of any nonbarrier contraceptive in the year following the birth and type of method provided. In the first year postpartum, women with intellectual and developmental disabilities were provided with contraceptives at a higher rate than were other women (relative risk 1.3); the difference was significant for both nonsurgical and surgical methods (1.2 and 1.8, respectively). The higher rate of nonsurgical contraceptive provision was explained by provision of injectables (1.9); there were no differences for pills or IUDs. Nonbarrier contraceptives may be the most appropriate methods for some women with intellectual and developmental disabilities. However, future research should investigate why women with such disabilities are more likely than others to receive injectable contraceptives, which have possible negative side effects, and surgical contraception, which is irreversible. Research also should investigate how these women perceive their participation in contraceptive decision making. Copyright © 2018 by the Guttmacher Institute.

Food Insecurity among Young Adults with Intellectual and Developmental Disabilities in the United States: Evidence from the National Health Interview Survey

ERIC Educational Resources Information Center

Brucker, Debra L.; Nord, Derek

2016-01-01

People with intellectual or developmental disabilities (IDD) face higher levels of poverty than others, which can lead to concerns regarding areas of well-being, such as food security. Young adults with IDD who are, in many cases, transitioning from the system of educational, health care, and income supports of their youth into the adult world may…

Implementation of Evidence-Based Practice From a Learning Perspective.

PubMed

Nilsen, Per; Neher, Margit; Ellström, Per-Erik; Gardner, Benjamin

2017-06-01

For many nurses and other health care practitioners, implementing evidence-based practice (EBP) presents two interlinked challenges: acquisition of EBP skills and adoption of evidence-based interventions and abandonment of ingrained non-evidence-based practices. The purpose of this study to describe two modes of learning and use these as lenses for analyzing the challenges of implementing EBP in health care. The article is theoretical, drawing on learning and habit theory. Adaptive learning involves a gradual shift from slower, deliberate behaviors to faster, smoother, and more efficient behaviors. Developmental learning is conceptualized as a process in the "opposite" direction, whereby more or less automatically enacted behaviors become deliberate and conscious. Achieving a more EBP depends on both adaptive and developmental learning, which involves both forming EBP-conducive habits and breaking clinical practice habits that do not contribute to realizing the goals of EBP. From a learning perspective, EBP will be best supported by means of adaptive learning that yields a habitual practice of EBP such that it becomes natural and instinctive to instigate EBP in appropriate contexts by means of seeking out, critiquing, and integrating research into everyday clinical practice as well as learning new interventions best supported by empirical evidence. However, the context must also support developmental learning that facilitates disruption of existing habits to ascertain that the execution of the EBP process or the use of evidence-based interventions in routine practice is carefully and consciously considered to arrive at the most appropriate response. © 2017 Sigma Theta Tau International.

Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer

PubMed Central

Wiener, Lori; Weaver, Meaghann Shaw; Bell, Cynthia J; Sansom-Daly, Ursula M

2015-01-01

Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA's quality of life as end of life nears. PMID:25750863

After the Visit: An Overview of Government and Community Programs Supporting Children with Medical Complexity.

PubMed

Olson, Kaitlyn B

2017-05-04

The optimal care of children with medical complexity (CMC) requires involvement from a network of professionals that includes physicians, nurses, ancillary service providers, and educators. Pediatric health care providers typically have early and frequent contact with the families of CMC. Therefore, they are in a unique position to connect families to developmental, educational, and psychosocial supports. This article reviews important government and community programs that support CMC living in the United States. It outlines the educational rights of children with disabilities and offers practical tips for collaborating with Early Intervention and the public school system. The article also provides an overview of financial assistance programs, respite care services, and support groups that are beneficial to CMC and their families.

Adolescent pregnancy.

PubMed

Short, J D; Slusher, I L

1994-01-01

Kentucky has the fourth highest percentage of infants born to teenage mothers in the US. Risk factors for adolescent pregnancy are poor academic performance, family history of adolescent pregnancy, absence of one or both biological parents in the home, troubled family relationships, family violence, history of substance abuse, and poor self-concept. Pregnancy adds new developmental requirements to the continual developmental crisis of adolescence. Some of these developmental requirements are dealing with pregnancy and birth of a child and peer and family reactions and relationships. Pregnant teens are at high risk for anemia, preeclampsia, preterm delivery, and low birth weight infants. The health care team must assess the abilities, needs, practices, and priorities of teens. Nurses should promote health and positive health practices in teens. They should focus on prevention of adolescent pregnancy and on meeting the needs of pregnant teens. Adolescent pregnancy interventions include education and adolescent-centered special programs. Peer groups, role playing, videos, and computer games are individualized and effective education techniques for teens. Formal adolescent pregnancy prevention programs are abstinence education, knowledge-based programs, and clinic-focused or school-based programs. A combination of approaches is more effective than using just one approach. Adolescent pregnancy prevention interventions should promote the value of education, discourage substance abuse, and provide counseling for victims of child abuse. Pregnant teens should receive prenatal care as soon as possible. One health care agency should combine physical care, psychosocial support, and education for teens. Kentucky schools help pregnant teens continue their education and help them obtain information and support for care for themselves and their babies. Nurses can be effective at reducing the number of unwanted teen pregnancies.

Work Stress, Burnout, and Social and Personal Resources among Direct Care Workers

ERIC Educational Resources Information Center

Gray-Stanley, Jennifer A.; Muramatsu, Naoko

2011-01-01

Work stress is endemic among direct care workers (DCWs) who serve people with intellectual and developmental disabilities. Social resources, such as work social support, and personal resources, such as an internal locus of control, may help DCWs perceive work overload and other work-related stressors as less threatening and galvanize them to cope…

Prior trauma exposure and serious illness at end of life: A national study of children in the US foster care system from 2005 to 2015.

PubMed

Lindley, Lisa C; Slayter, Elspeth M

2018-06-08

Children in foster care suffer with serious illness at end of life. However, the relationship between prior trauma exposure and serious illness has received little empirical attention. The objectives were to examine the prevalence and type of trauma exposure, and investigate the relationship between prior trauma and serious illness among foster children at end of life. We used national longitudinal foster care data. We included children who were less than 18 years with residence in the United States. Serious illness (i.e., physical health, mental/behavioral health, developmental disabilities) was measured via the foster care files. Three measures of prior trauma exposure (i.e., maltreatment, drug/alcohol exposure, psychosocial stressors) were created. Using multivariate logistic regressions, we evaluated the influence of prior trauma on serious illness at end of life, while controlling for demographic, geographic, and foster care support characteristics. Sixty-eight percent of children experienced maltreatment, 28% exposure to parental drug/alcohol misuse, and 39% psychosocial stressors prior to entering foster care. Maltreatment was positively associated with physical health and developmental disabilities, while parental drug/alcohol exposure was inversely related to developmental disabilities. Psychosocial stressors contributed to the prediction of poor physical, mental, and developmental health. These findings suggest that trauma-informed end-of-life care may be a critical need among children in foster care with serious illness. Future directions are discussed, including collaboration between end-of-life clinicians and social service workers and the importance of future research to understand and improve the quality of health at end of life for this underserved population. Copyright © 2018. Published by Elsevier Inc.

The Alternative Peer Group: A Developmentally Appropriate Recovery Support Model for Adolescents.

PubMed

Nash, Angela; Collier, Crystal

2016-01-01

Recovery as the goal for substance use disorder treatment has been a key component of the Substance Abuse and Mental Health Services Administration's mission for the past decade. Consistent with their mission, there is a call for research and development of recovery-oriented systems of care to support affected individuals through all stages of the recovery process. Evidence is emerging to support recovery practice and research for adults, but recovery-oriented models for adolescents are scant. The Alternative Peer Group (APG) is a comprehensive adolescent recovery support model that integrates recovering peers and prosocial activities into evidence-based clinical practice. Employing APG participants' own words, this article will describe the essential elements and three theoretical frameworks underlying the APG model to illustrate how the APG serves as a developmentally appropriate recovery support service for adolescents with substance use disorder.

Support for Family Carers of Children and Young People with Developmental Disabilities and Challenging Behaviour: What Stops It Being Helpful?

ERIC Educational Resources Information Center

Wodehouse, G.; McGill, P.

2009-01-01

Background: Many family carers find the support they receive in respect of their child's challenging behaviour unhelpful. This study sought to identify carer perceptions of the ways in which support is unhelpful and how it could be more helpful. Methods: Thirteen mothers, caring for a child with intellectual disability and challenging behaviour,…

Integrating Parenting Support Within and Beyond the Pediatric Medical Home.

PubMed

Linton, Julie M; Stockton, Maria Paz; Andrade, Berta; Daniel, Stephanie

2018-01-01

Positive parenting programs, developmental support services, and evidence-based home visiting programs can effectively provide parenting support and improve health and developmental outcomes for at-risk children. Few models, however, have integrated referrals for on-site support and home visiting programs into the provision of routine pediatric care within a medical home. This article describes an innovative approach, through partnership with a community-based organization, to deliver on-site and home visiting support services for children and families within and beyond the medical home. Our model offers a system of on-site services, including parenting, behavior, and/or development support, with optional intensive home visiting services. Assessment included description of the population served, delineation of services provided, and qualitative identification of key themes of the impact of services, illustrated by case examples. This replicable model describes untapped potential of the pediatric medical home as a springboard to mitigate risk and optimize children's health and development.

Patient-centered medical homes for patients with disabilities.

PubMed

Hernandez, Brigida; Damiani, Marco; Wang, T Arthur; Driscoll, Carolyn; Dellabella, Peter; LePera, Nicole; Mentari, Michael

2015-01-01

The patient-centered medical home is an innovative approach to improve health care outcomes. To address the unique needs of patients with intellectual and developmental disabilities (IDDs), a large health care provider reevaluated the National Committee for Quality Assurance's 6 medical home standards: (a) enhance access and continuity, (b) identify and manage patient populations, (c) plan and manage care, (d) provide self-care and community support, (e) track and coordinate care, and (f) measure and improve performance. This article describes issues to consider when serving patients with IDDs.

Type 1 Diabetes in Young Adulthood

PubMed Central

Monaghan, Maureen; Helgeson, Vicki; Wiebe, Deborah

2015-01-01

Type 1 diabetes has traditionally been studied as a chronic illness of childhood. However, young adulthood is a critical time for the development and integration of lifelong diabetes management skills, and research is starting to identify unique challenges faced by youth with diabetes as they age into adulthood. Most young adults experience multiple transitions during this unstable developmental period, including changes in lifestyle (e.g., education, occupation, living situation), changes in health care, and shifting relationships with family members, friends, and intimate others. Young adults with type 1 diabetes must navigate these transitions while also assuming increasing responsibility for their diabetes care and overall health. Despite these critical health and psychosocial concerns, there is a notable lack of evidence-based clinical services and supports for young adults with type 1 diabetes. We review relevant evolving concerns for young adults with type 1 diabetes, including lifestyle considerations, health care transitions, psychosocial needs, and changes in supportive networks, and how type 1 diabetes impacts and is impacted by these key developmental considerations. Specific avenues for intervention and future research are offered. PMID:25901502

Nurturing care: promoting early childhood development.

PubMed

Britto, Pia R; Lye, Stephen J; Proulx, Kerrie; Yousafzai, Aisha K; Matthews, Stephen G; Vaivada, Tyler; Perez-Escamilla, Rafael; Rao, Nirmala; Ip, Patrick; Fernald, Lia C H; MacMillan, Harriet; Hanson, Mark; Wachs, Theodore D; Yao, Haogen; Yoshikawa, Hirokazu; Cerezo, Adrian; Leckman, James F; Bhutta, Zulfiqar A

2017-01-07

The UN Sustainable Development Goals provide a historic opportunity to implement interventions, at scale, to promote early childhood development. Although the evidence base for the importance of early childhood development has grown, the research is distributed across sectors, populations, and settings, with diversity noted in both scope and focus. We provide a comprehensive updated analysis of early childhood development interventions across the five sectors of health, nutrition, education, child protection, and social protection. Our review concludes that to make interventions successful, smart, and sustainable, they need to be implemented as multi-sectoral intervention packages anchored in nurturing care. The recommendations emphasise that intervention packages should be applied at developmentally appropriate times during the life course, target multiple risks, and build on existing delivery platforms for feasibility of scale-up. While interventions will continue to improve with the growth of developmental science, the evidence now strongly suggests that parents, caregivers, and families need to be supported in providing nurturing care and protection in order for young children to achieve their developmental potential. Copyright © 2017 Elsevier Ltd. All rights reserved.

Diverging Destinies: Maternal Education and the Developmental Gradient in Time with Children*

PubMed Central

Kalil, Ariel; Ryan, Rebecca; Corey, Michael

2016-01-01

Using data from the 2003–2007 American Time Use Surveys (ATUS), we compare mothers’ (N = 6,640) time spent in four parenting activities across maternal education and child age subgroups. We test the hypothesis that highly educated mothers not only spend more time in active child care than less educated mothers, but that they alter the composition of that time to suit children’s developmental needs more than less educated mothers. Results support this hypothesis: highly educated mothers not only invest more time in basic care and play when youngest children are infants or toddlers than when children are older, but differences across education groups in basic care and play time are largest among mothers with infants or toddlers; by contrast, highly educated mothers invest more time in management activities when children are six to 13 years old than when children are younger, and differences across education groups in management are largest among mothers with school-aged children. These patterns indicate that the education gradient in mothers’ time with children is characterized by a ‘developmental gradient.’ PMID:22886758

Diverging destinies: maternal education and the developmental gradient in time with children.

PubMed

Kalil, Ariel; Ryan, Rebecca; Corey, Michael

2012-11-01

Using data from the 2003-2007 American Time Use Surveys (ATUS), we compare mothers' (N = 6,640) time spent in four parenting activities across maternal education and child age subgroups. We test the hypothesis that highly educated mothers not only spend more time in active child care than less-educated mothers but also alter the composition of that time to suit children's developmental needs more than less-educated mothers. Results support this hypothesis: not only do highly educated mothers invest more time in basic care and play when youngest children are infants or toddlers than when children are older, but differences across education groups in basic care and play time are largest among mothers with infants or toddlers; by contrast, highly educated mothers invest more time in management activities when children are 6 to 13 years old than when children are younger, and differences across education groups in management are largest among mothers with school-aged children. These patterns indicate that the education gradient in mothers' time with children is characterized by a "developmental gradient."

How do low-birthweight neonates fare 2 years after discharge from a low-technology neonatal care unit in a rural district hospital in Burundi?

PubMed

van den Boogaard, W; Zuniga, I; Manzi, M; Van den Bergh, R; Lefevre, A; Nanan-N'zeth, K; Duchenne, B; Etienne, W; Juma, N; Ndelema, B; Zachariah, R; Reid, A

2017-04-01

As neonatal care is being scaled up in economically poor settings, there is a need to know more on post-hospital discharge and longer-term outcomes. Of particular interest are mortality, prevalence of developmental impairments and malnutrition, all known to be worse in low-birthweight neonates (LBW, <2500 g). Getting a better handle on these parameters might justify and guide support interventions. Two years after hospital discharge, we thus assessed: mortality, developmental impairments and nutritional status of LBW children. Household survey of LBW neonates discharged from a neonatal special care unit in Rural Burundi between January and December 2012. Of 146 LBW neonates, 23% could not be traced and 4% had died. Of the remaining 107 children (median age = 27 months), at least one developmental impairment was found in 27%, with 8% having at least five impairments. Main impairments included delays in motor development (17%) and in learning and speech (12%). Compared to LBW children (n = 100), very-low-birthweight (VLBW, <1500 g, n = 7) children had a significantly higher risk of impairments (intellectual - P = 0.001), needing constant supervision and creating a household burden (P = 0.009). Of all children (n-107), 18% were acutely malnourished, with a 3½ times higher risk in VLBWs (P = 0.02). Reassuringly, most children were thriving 2 years after discharge. However, malnutrition was prevalent and one in three manifested developmental impairments (particularly VLBWs) echoing the need for support programmes. A considerable proportion of children could not be traced, and this emphasises the need for follow-up systems post-discharge. © 2017 The Authors. Tropical Medicine & International Health Published by John Wiley & Sons Ltd.

Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers.

PubMed

Paine, Christine W; Stollon, Natalie B; Lucas, Matthew S; Brumley, Lauren D; Poole, Erika S; Peyton, Tamara; Grant, Anne W; Jan, Sophia; Trachtenberg, Symme; Zander, Miriam; Mamula, Petar; Bonafide, Christopher P; Schwartz, Lisa A

2014-11-01

For adolescents and young adults (AYA) with inflammatory bowel disease (IBD), the transition from pediatric to adult care is often challenging and associated with gaps in care. Our study objectives were to (1) identify outcomes for evaluating transition success and (2) elicit the major barriers and facilitators of successful transition. We interviewed pediatric and adult IBD providers from across the United States with experience caring for AYAs with IBD until thematic saturation was reached after 12 interviews. We elicited the participants' backgrounds, examples of successful and unsuccessful transition of AYAs for whom they cared, and recommendations for improving transition using the Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework. We coded interview transcripts using the constant comparative method and identified major themes. Participants reported evaluating transition success and failure using health care utilization outcomes (e.g., maintaining continuity with adult providers), health outcomes (e.g., stable symptoms), and quality of life outcomes (e.g., attending school). The patients' level of developmental maturity (i.e., ownership of care) was the most prominent determinant of transition outcomes. The style of parental involvement (i.e., helicopter parent versus optimally involved parent) and the degree of support by providers (e.g., care coordination) also influenced outcomes. IBD transition success is influenced by a complex interplay of patient developmental maturity, parenting style, and provider support. Multidisciplinary IBD care teams should aim to optimize these factors for each patient to increase the likelihood of a smooth transfer to adult care.

Global Disability: Empowering Children of all Abilities.

PubMed

Scharf, Rebecca J; Maphula, Angelina; Pullen, Paige C; Shrestha, Rita; Matherne, Gaynell Paul; Roshan, Reeba; Koshy, Beena

2017-08-01

Worldwide, children are often not meeting their developmental potential owing to malnutrition, infection, lack of stimulation, and toxic stress. Children with disabilities are more likely to experience poverty, neglect, and abuse, and are less likely to have adequate access to education and medical care. Early childhood developmental stimulation can improve language, learning, and future participation in communities. Therapeutic supports and endeavors to reduce stigma for people of all abilities strengthen communities and allow for human thriving. Copyright © 2017 Elsevier Inc. All rights reserved.

National study of public spending for mental retardation and developmental disabilities.

PubMed

Braddock, D; Hemp, R; Fujiura, G

1987-09-01

Results of a nationwide study of public mental retardation/developmental disabilities (MR/DD) spending in the states during Fiscal Years 1977 through 1986 were summarized. Trends identified included: (a) continuing growth in spending for community services, (b) contraction of total spending for institutional operations, and (c) predominance of ICF/MR support in large (16+ beds) congregate care settings. Periodic replication of the study was recommended as was additional research to identify the political and economic determinants of state MR/DD spending.

Patient-centered Care to Address Barriers for Pregnant Women with Opioid Dependence.

PubMed

Sutter, Mary Beth; Gopman, Sarah; Leeman, Lawrence

2017-03-01

Pregnant women affected by substance use often encounter barriers to treatment, including housing insecurity, poverty, mental health issues, social stigma, and access to health care. Providers may lack the resources needed to provide quality care. Clinicians offering prenatal care to women with substance use disorder are encouraged to support family-centered, multidisciplinary care to women and their infants, focusing on harm reduction. Collaboration between providers of maternity care, substance abuse treatment, case management, family primary care, and pediatric developmental care can improve outcomes during pregnancy and through the early years of parenting. Copyright © 2016 Elsevier Inc. All rights reserved.

Integrated Primary Care Teams (IPCT) pilot project in Quebec: a protocol paper

PubMed Central

Contandriopoulos, Damien; Duhoux, Arnaud; Roy, Bernard; Amar, Maxime; Bonin, Jean-Pierre; Borges Da Silva, Roxane; Brault, Isabelle; Dallaire, Clémence; Dubois, Carl-Ardy; Girard, Francine; Jean, Emmanuelle; Larue, Caroline; Lessard, Lily; Mathieu, Luc; Pépin, Jacinthe; Cockenpot, Aurore

2015-01-01

Introduction The overall aim of this project is to help develop knowledge about primary care delivery models likely to improve the accessibility, quality and efficiency of care. Operationally, this objective will be achieved through supporting and evaluating 8 primary care team pilot sites that rely on an expanded nursing role within a more intensive team-based, interdisciplinary setting. Methods and analysis The first research component is aimed at supporting the development and implementation of the pilot projects, and is divided into 2 parts. The first part is a logical analysis based on interpreting available scientific data to understand the causal processes by which the objectives of the intervention being studied may be achieved. The second part is a developmental evaluation to support teams in the field in a participatory manner and thereby learn from experience. Operationally, the developmental evaluation phase mainly involves semistructured interviews. The second component of the project design focuses on evaluating pilot project results and assessing their costs. This component is in turn made up of 2 parts. Part 1 is a pre-and-post survey of patients receiving the intervention care to analyse their care experience. In part 2, each patient enrolled in part 1 (around 4000 patients) will be matched with 2 patients followed within a traditional primary care model, so that a comparative analysis of the accessibility, quality and efficiency of the intervention can be performed. The cohorts formed in this way will be followed longitudinally for 4 years. Ethics and dissemination The project, as well as all consent forms and research tools, have been accepted by 2 health sciences research ethics committees. The procedures used will conform to best practices regarding the anonymity of patients. PMID:26700294

Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers

PubMed Central

Paine, Christine Weirich; Stollon, Natalie B.; Lucas, Matthew S.; Brumley, Lauren D.; Poole, Erika S.; Peyton, Tamara; Grant, Anne W.; Jan, Sophia; Trachtenberg, Symme; Zander, Miriam; Mamula, Petar; Bonafide, Christopher P.; Schwartz, Lisa A.

2014-01-01

Background For adolescents and young adults (AYA) with inflammatory bowel disease (IBD), the transition from pediatric to adult care is often challenging and associated with gaps in care. Our study objectives were to (1) identify outcomes for evaluating transition success and (2) elicit the major barriers and facilitators of successful transition. Methods We interviewed pediatric and adult IBD providers from across the United States with experience caring for AYAs with IBD until thematic saturation was reached after 12 interviews. We elicited the participants' backgrounds, examples of successful and unsuccessful transition of AYAs for whom they cared, and recommendations for improving transition using the Social-ecological Model of Adolescent and Young Adult Readiness to Transition framework. We coded interview transcripts using the constant comparative method and identified major themes. Results Participants reported evaluating transition success and failure using healthcare utilization outcomes (e.g. maintaining continuity with adult providers), health outcomes (e.g. stable symptoms), and quality of life outcomes (e.g. attending school). The patients' level of developmental maturity (i.e. ownership of care) was the most prominent determinant of transition outcomes. The style of parental involvement (i.e. helicopter parent vs. optimally-involved parent) also influenced outcomes as well as the degree of support by providers (e.g. care coordination). Conclusion IBD transition success is influenced by a complex interplay of patient developmental maturity, parenting style, and provider support. Multidisciplinary IBD care teams should aim to optimize these factors for each patient to increase the likelihood of a smooth transfer to adult care. PMID:25137417

Science and pseudoscience in developmental disabilities: guidelines for social workers.

PubMed

Thyer, Bruce A; Pignotti, Monica

2010-01-01

Individuals with a developmental disability can now be provided a variety of empirically supported treatments that have been shown to be useful in promoting educational attainments, social and vocational skills, and self-care, and in reducing behavioral problems. Unfortunately, a large number of pseudoscientific or bogus therapies continue to be offered to this population and their families. We review the characteristics of pseudoscientific and bogus treatments and provide several examples of unsupported or harmful interventions offered by contemporary social workers and other human service professionals, to the detriment of people with disabilities. We encourage social workers to identify pseudoscientific interventions and avoid providing these, in favor of using empirically supported treatments.

Work Stress, Burnout, and Social and Personal Resources among Direct Care Workers

PubMed Central

Gray-Stanley, Jennifer A.; Muramatsu, Naoko

2014-01-01

Work stress is endemic among direct care workers (DCWs) who serve people with intellectual and developmental disabilities. Social resources, such as work social support, and personal resources, such as an internal locus of control, may help DCWs perceive work overload and other work-related stressors as less threatening and galvanize them to cope more effectively to prevent burnout. However, little is known about what resources are effective for coping with what types of work stress. Thus, we examined how work stress and social and personal resources are associated with burnout for DCWs. We conducted a survey of DCWs (n = 323) from five community-based organizations that provide residential, vocational, and personal care services for adults with intellectual and developmental disabilities. Participants completed a self-administered survey about their perceptions of work stress, work social support, locus of control, and burnout relative to their daily work routine. We conducted multiple regression analysis to test both the main and interaction effects of work stress and resources with respect to burnout. Work stress, specifically work overload, limited participation decision-making, and client disability care was positively associated with burnout (p < .001). The association between work social support and burnout depended on the levels of work overload (p < .05), and the association between locus of control and burnout depended on the levels of work overload (p < .05) and participation in decision-making (p < .05). Whether work social support and locus of control make a difference depends on the kinds and the levels of work stressors. The findings underscore the importance of strong work-based social support networks and stress management resources for DCWs. PMID:21316918

Instituting parent education practices in the neonatal intensive care unit: an administrative case report of practice evaluation and statewide action.

PubMed

Dusing, Stacey C; Van Drew, Catherine M; Brown, Shaaron E

2012-07-01

Infants born preterm are at high risk of developmental disabilities and benefit from early developmental intervention programs. Physical therapists with neonatal expertise are ideally suited to educate parents about ways to support their infant's development in the first months of life. However, administrative policies are needed to support the therapist in providing adequate parent education in the neonatal intensive care unit (NICU). This administrative case report describes the process used by a team of neonatal therapists to evaluate clinical practice, determine the need for change, and develop and implement a new parent education program in the NICU. Physical therapy parent education practices were evaluated in an academic medical center with a 36-bed, level-3 NICU. Physical therapists with neonatal expertise covered multiple units within the hospital each day. A series of focus groups, a small descriptive study, and staff discussion were used to evaluate parent education practices in this academic medical center. A new parent education program was developed based on data collected and literature to improve clinical care. The new parent education model was implemented over the course of several months using overlapping initiatives. Administrative support for the change was developed through collaboration, open communication, and presentation of clinical data. In addition, this hospital-based program contributed to the development of a statewide initiative to educate parents of preterm infants about the importance of supporting development in the first months of life. A collaborative and data-driven approach to evaluating parent education practices supported the development of a new parent education practice while acknowledging the need to meet staff productivity standards and provide excellent care throughout the hospital.

Instituting Parent Education Practices in the Neonatal Intensive Care Unit: An Administrative Case Report of Practice Evaluation and Statewide Action

PubMed Central

Van Drew, Catherine M.; Brown, Shaaron E.

2012-01-01

Background and Purpose Infants born preterm are at high risk of developmental disabilities and benefit from early developmental intervention programs. Physical therapists with neonatal expertise are ideally suited to educate parents about ways to support their infant's development in the first months of life. However, administrative policies are needed to support the therapist in providing adequate parent education in the neonatal intensive care unit (NICU). This administrative case report describes the process used by a team of neonatal therapists to evaluate clinical practice, determine the need for change, and develop and implement a new parent education program in the NICU. Case Description Physical therapy parent education practices were evaluated in an academic medical center with a 36-bed, level-3 NICU. Physical therapists with neonatal expertise covered multiple units within the hospital each day. A series of focus groups, a small descriptive study, and staff discussion were used to evaluate parent education practices in this academic medical center. A new parent education program was developed based on data collected and literature to improve clinical care. Outcomes The new parent education model was implemented over the course of several months using overlapping initiatives. Administrative support for the change was developed through collaboration, open communication, and presentation of clinical data. In addition, this hospital-based program contributed to the development of a statewide initiative to educate parents of preterm infants about the importance of supporting development in the first months of life. Discussion A collaborative and data-driven approach to evaluating parent education practices supported the development of a new parent education practice while acknowledging the need to meet staff productivity standards and provide excellent care throughout the hospital. PMID:22466024

The Evolving Practice of Developmental Care in the Neonatal Unit: A Systematic Review

ERIC Educational Resources Information Center

Legendre, Valerie; Burtner, Patricia A.; Martinez, Katrina L.; Crowe, Terry K.

2011-01-01

Many neonatal intensive care units (NICUs) are experiencing changes in their approaches to preterm infant care as they consider and incorporate the philosophy of individualized developmental care. The aim of this systematic review is to research current literature documenting the short-term effects of developmental care and the Newborn…

Glassfrog embryos hatch early after parental desertion.

PubMed

Delia, Jesse R J; Ramírez-Bautista, Aurelio; Summers, Kyle

2014-06-22

Both parental care and hatching plasticity can improve embryo survival. Research has found that parents can alter hatching time owing to a direct effect of care on embryogenesis or via forms of care that cue the hatching process. Because parental care alters conditions critical for offspring development, hatching plasticity could allow embryos to exploit variation in parental behaviour. However, this interaction of parental care and hatching plasticity remains largely unexplored. We tested the hypothesis that embryos hatch early to cope with paternal abandonment in the glassfrog Hyalinobatrachium fleischmanni (Centrolenidae). We conducted male-removal experiments in a wild population, and examined embryos' response to conditions with and without fathers. Embryos hatched early when abandoned, but extended development in the egg stage when fathers continued care. Paternal care had no effect on developmental rate. Rather, hatching plasticity was due to embryos actively hatching at different developmental stages, probably in response to deteriorating conditions without fathers. Our experimental results are supported by a significant correlation between the natural timing of abandonment and hatching in an unmanipulated population. This study demonstrates that embryos can respond to conditions resulting from parental abandonment, and provides insights into how variation in care can affect selection on egg-stage adaptations.

Glassfrog embryos hatch early after parental desertion

PubMed Central

Delia, Jesse R. J.; Ramírez-Bautista, Aurelio; Summers, Kyle

2014-01-01

Both parental care and hatching plasticity can improve embryo survival. Research has found that parents can alter hatching time owing to a direct effect of care on embryogenesis or via forms of care that cue the hatching process. Because parental care alters conditions critical for offspring development, hatching plasticity could allow embryos to exploit variation in parental behaviour. However, this interaction of parental care and hatching plasticity remains largely unexplored. We tested the hypothesis that embryos hatch early to cope with paternal abandonment in the glassfrog Hyalinobatrachium fleischmanni (Centrolenidae). We conducted male-removal experiments in a wild population, and examined embryos' response to conditions with and without fathers. Embryos hatched early when abandoned, but extended development in the egg stage when fathers continued care. Paternal care had no effect on developmental rate. Rather, hatching plasticity was due to embryos actively hatching at different developmental stages, probably in response to deteriorating conditions without fathers. Our experimental results are supported by a significant correlation between the natural timing of abandonment and hatching in an unmanipulated population. This study demonstrates that embryos can respond to conditions resulting from parental abandonment, and provides insights into how variation in care can affect selection on egg-stage adaptations. PMID:24789892

Developmental stress increases reproductive success in male zebra finches.

PubMed

Crino, Ondi L; Prather, Colin T; Driscoll, Stephanie C; Good, Jeffrey M; Breuner, Creagh W

2014-11-22

There is increasing evidence that exposure to stress during development can have sustained effects on animal phenotype and performance across life-history stages. For example, developmental stress has been shown to decrease the quality of sexually selected traits (e.g. bird song), and therefore is thought to decrease reproductive success. However, animals exposed to developmental stress may compensate for poor quality sexually selected traits by pursuing alternative reproductive tactics. Here, we examine the effects of developmental stress on adult male reproductive investment and success in the zebra finch (Taeniopygia guttata). We tested the hypothesis that males exposed to developmental stress sire fewer offspring through extra-pair copulations (EPCs), but invest more in parental care. To test this hypothesis, we fed nestlings corticosterone (CORT; the dominant avian stress hormone) during the nestling period and measured their adult reproductive success using common garden breeding experiments. We found that nestlings reared by CORT-fed fathers received more parental care compared with nestlings reared by control fathers. Consequently, males fed CORT during development reared nestlings in better condition compared with control males. Contrary to the prediction that developmental stress decreases male reproductive success, we found that CORT-fed males also sired more offspring and were less likely to rear non-genetic offspring compared with control males, and thus had greater overall reproductive success. These data are the first to demonstrate that developmental stress can have a positive effect on fitness via changes in reproductive success and provide support for an adaptive role of developmental stress in shaping animal phenotype. © 2014 The Author(s) Published by the Royal Society. All rights reserved.

Translating Developmental Origins: Improving the Health of Women and Their Children Using a Sustainable Approach to Behaviour Change

PubMed Central

Barker, Mary; Baird, Janis; Tinati, Tannaze; Vogel, Christina; Strömmer, Sofia; Rose, Taylor; Begum, Rufia; Jarman, Megan; Davies, Jenny; Thompson, Sue; Taylor, Liz; Inskip, Hazel; Cooper, Cyrus; Nutbeam, Don; Lawrence, Wendy

2017-01-01

Theories of the developmental origins of health and disease imply that optimising the growth and development of babies is an essential route to improving the health of populations. A key factor in the growth of babies is the nutritional status of their mothers. Since women from more disadvantaged backgrounds have poorer quality diets and the worst pregnancy outcomes, they need to be a particular focus. The behavioural sciences have made a substantial contribution to the development of interventions to support dietary changes in disadvantaged women. Translation of such interventions into routine practice is an ideal that is rarely achieved, however. This paper illustrates how re-orientating health and social care services towards an empowerment approach to behaviour change might underpin a new developmental focus to improving long-term health, using learning from a community-based intervention to improve the diets and lifestyles of disadvantaged women. The Southampton Initiative for Health aimed to improve the diets and lifestyles of women of child-bearing age through training health and social care practitioners in skills to support behaviour change. Analysis illustrates the necessary steps in mounting such an intervention: building trust; matching agendas and changing culture. The Southampton Initiative for Health demonstrates that developing sustainable; workable interventions and effective community partnerships; requires commitment beginning long before intervention delivery but is key to the translation of developmental origins research into improvements in human health. PMID:28335519

Translating Developmental Origins: Improving the Health of Women and Their Children Using a Sustainable Approach to Behaviour Change.

PubMed

Barker, Mary; Baird, Janis; Tinati, Tannaze; Vogel, Christina; Strömmer, Sofia; Rose, Taylor; Begum, Rufia; Jarman, Megan; Davies, Jenny; Thompson, Sue; Taylor, Liz; Inskip, Hazel; Cooper, Cyrus; Nutbeam, Don; Lawrence, Wendy

2017-03-20

Theories of the developmental origins of health and disease imply that optimising the growth and development of babies is an essential route to improving the health of populations. A key factor in the growth of babies is the nutritional status of their mothers. Since women from more disadvantaged backgrounds have poorer quality diets and the worst pregnancy outcomes, they need to be a particular focus. The behavioural sciences have made a substantial contribution to the development of interventions to support dietary changes in disadvantaged women. Translation of such interventions into routine practice is an ideal that is rarely achieved, however. This paper illustrates how re-orientating health and social care services towards an empowerment approach to behaviour change might underpin a new developmental focus to improving long-term health, using learning from a community-based intervention to improve the diets and lifestyles of disadvantaged women. The Southampton Initiative for Health aimed to improve the diets and lifestyles of women of child-bearing age through training health and social care practitioners in skills to support behaviour change. Analysis illustrates the necessary steps in mounting such an intervention: building trust; matching agendas and changing culture. The Southampton Initiative for Health demonstrates that developing sustainable; workable interventions and effective community partnerships; requires commitment beginning long before intervention delivery but is key to the translation of developmental origins research into improvements in human health.

[OurPuppet - Caring support with an interactive puppet for informal caregivers : Opportunities and challenges in the social and technical developmental process].

PubMed

Kuhlmann, Andrea; Reuter, Verena; Schramek, Renate; Dimitrov, Todor; Görnig, Matthias; Matip, Eva-Maria; Matthies, Olaf; Naroska, Edwin

2018-01-01

The "OurPuppet" project comprises a sensor-based, interactive puppet that will be developed to communicate with people in need of care during a short period of absence of the informal caregiver. Specially qualified puppet guides will support the use of the new technical development. They instruct people with dementia and caregivers on how to use the puppet and supervise the (informal) care relationship through discussions on a regular basis. The article shows the specific components of users' needs for which the concrete technical development should find answers. It also focuses on the opportunities and challenges for the technical and social developmental process accompanied by these demands. The analysis of the users' needs is based on a participatory approach. Semi-structured focus group interviews were conducted with informal caregivers, nurses and volunteers in order to identify typical situations in home care settings. The interviews were paraphrased and summarized in order to deduce inductive categories (qualitative data analysis), which describe everyday situations that the technical system should address. Such analyses provide information about the needs of potential users and indicate how to design such technical systems. Furthermore, opportunities and challenges of the development process as well as important contextual information were identified.

Teaching Kids about Social Justice

ERIC Educational Resources Information Center

Curriculum Review, 2007

2007-01-01

The Search Institute, a nonprofit research organization in Minneapolis, Minnesota, defines developmental assets as good things everyone needs to be happy in life, such as a supportive family, a caring neighborhood, integrity, self-esteem, resistance skills, conflict resolution skills, constructive activities and a sense of purpose. "A…

Nutritional and dental issues in patients with intellectual and developmental disabilities.

PubMed

Ziegler, Jane; Spivack, Evan

2018-04-01

People with intellectual and developmental disabilities are among the most disadvantaged and underserved groups of dental patients. Considerable health care disparities for this population have been identified, particularly oral and dental health as well as access to dental care services. People with Down syndrome and cerebral palsy have a variety of nutritional and dental considerations. These people have a higher prevalence of untreated caries and periodontal disease than the general population and may have higher rates of obesity, edentulism, and chronic oral and systemic diseases. Diet choices may affect the oral health and may play an important role in the systemic health of these people. Suggestions to improve and affect dietary intake are provided. Health issues within this population require a holistic approach to care. Concerns about oral health and diet must be addressed to support optimal health. Copyright © 2018 American Dental Association. Published by Elsevier Inc. All rights reserved.

Risk status for dropping out of developmental followup for very low birth weight infants.

PubMed

Catlett, A T; Thompson, R J; Johndrow, D A; Boshkoff, M R

1993-01-01

Not keeping scheduled visits for medical care is a major health care issue. Little research has addressed how the interaction of demographic and biomedical parameters with psychosocial processes has an impact on appointment keeping. Typical factors are stress of daily living, methods of coping, social support, and instrumental support (that is, tangible assistance). In this study, the authors examine the role of these parameters and processes in the risk status for dropping out of a developmental followup program for very low birth weight infants. The findings suggest that the stress of daily living is a significant predictor for the mother's return when the infant is 6 months of age (corrected for prematurity). The predictors for return at 24 months corrected age include marital status, race, gestational age of the infant, maternal intelligence, and efficacy expectations. Providing transportation was found to be a successful intervention strategy for a subgroup at very high risk for dropping out due to a constellation of biomedical, demographic, and psychosocial factors.

Risk status for dropping out of developmental followup for very low birth weight infants.

PubMed Central

Catlett, A T; Thompson, R J; Johndrow, D A; Boshkoff, M R

1993-01-01

Not keeping scheduled visits for medical care is a major health care issue. Little research has addressed how the interaction of demographic and biomedical parameters with psychosocial processes has an impact on appointment keeping. Typical factors are stress of daily living, methods of coping, social support, and instrumental support (that is, tangible assistance). In this study, the authors examine the role of these parameters and processes in the risk status for dropping out of a developmental followup program for very low birth weight infants. The findings suggest that the stress of daily living is a significant predictor for the mother's return when the infant is 6 months of age (corrected for prematurity). The predictors for return at 24 months corrected age include marital status, race, gestational age of the infant, maternal intelligence, and efficacy expectations. Providing transportation was found to be a successful intervention strategy for a subgroup at very high risk for dropping out due to a constellation of biomedical, demographic, and psychosocial factors. PMID:8210257

Bridging the divide between families and health professionals’ perspectives on family‐centred care

PubMed Central

MacKean, Gail L.; Thurston, Wilfreda E.; Scott, Catherine M.

2005-01-01

Abstract Objectives  To describe and discuss key findings from a recent research project that challenge an increasingly prevalent theme, apparent in both family‐centred care research and practice, of conceptualizing family‐centred care as shifting care, care management, and advocacy responsibilities to families. The purpose of the research, from which these findings emerged, was to develop a conceptualization of family‐centred care grounded in the experiences of families and direct health‐care providers. Design  Qualitative research methods, following the grounded theory tradition, were used to develop a conceptual framework that described the dimensions of the concept of family‐centred care and their interrelationships, in the substantive area of children's developmental services. This article reports on and extends key findings from this grounded theory study, in light of current trends in the literature. Setting and participants  The substantive area that served as the setting for the research was developmental services at a children's hospital in Alberta, Canada. Data was collected through focus groups and individual interviews with 37 parents of children diagnosed with a developmental problem and 16 frontline health‐care providers. Findings  Key findings from this research project do not support the current emphasis in family‐centred care research and practice on conceptualizing family‐centred care as the shifting of care, care management, and advocacy responsibilities to families. Rather, what emerged was that parents want to work truly collaboratively with health‐care providers in making treatment decisions and on implementing a dynamic care plan that will work best for child and family. Discussion and conclusions  A definition of collaboration is provided, and the nature of collaborative relationships described. Contributing factors to the difficulty in establishing true collaborative relationships between families and health‐care professionals, where the respective roles to be played by health‐care professionals and families are jointly determined, are discussed. In light of these findings we strongly advocate for the re‐examination of current family‐centred care policy and practice. PMID:15713173

Developmentally and Culturally Appropriate Screening in Primary Care: Development of the Behavioral Health Checklist

PubMed Central

Koshy, Anson J.; Watkins, Marley W.; Cassano, Michael C.; Wahlberg, Andrea C.; Mautone, Jennifer A.; Blum, Nathan J.

2013-01-01

Objective To evaluate the construct validity of the Behavioral Health Checklist (BHCL) for children aged from 4 to 12 years from diverse backgrounds. Method The parents of 4–12-year-old children completed the BHCL in urban and suburban primary care practices affiliated with a tertiary-care children’s hospital. Across practices, 1,702 were eligible and 1,406 (82.6%) provided consent. Children of participating parents were primarily non-Hispanic black/African American and white/Caucasian from low- to middle-income groups. Confirmatory factor analyses examined model fit for the total sample and subsamples defined by demographic characteristics. Results The findings supported the hypothesized 3-factor structure: Internalizing Problems, Externalizing Problems, and Inattention/Hyperactivity. The model demonstrated adequate to good fit across age-groups, gender, races, income groups, and suburban versus urban practices. Conclusion The findings provide strong evidence of the construct validity, developmental appropriateness, and cultural sensitivity of the BHCL when used for screening in primary care. PMID:23978505

Children's Mental Health as a Primary Care and Concern

PubMed Central

Tolan, Patrick H.; Dodge, Kenneth A.

2009-01-01

In response to the serious crisis in mental health care for children in the United States, this article proposes as a priority for psychology a comprehensive approach that treats mental health as a primary issue in child health and welfare. Consistent with the principles of a system of care and applying epidemiological, risk-development, and intervention-research findings, this approach emphasizes 4 components: easy access to effective professional clinical services for children exhibiting disorders; further development and application of sound prevention principles for high-risk youths; support for and access to short-term intervention in primary care settings; and greater recognition and promotion of mental health issues in common developmental settings and other influential systems. Integral to this approach is the need to implement these components simultaneously and to incorporate family-focused, culturally competent, evidence-based, and developmentally appropriate services. This comprehensive, simultaneous, and integrated approach is needed to achieve real progress in children's mental health in this country. PMID:16173893

Personalization, self-advocacy and inclusion: An evaluation of parent-initiated supported living schemes for people with intellectual and developmental disabilities in the Netherlands.

PubMed

Reindl, Marie-Sol; Waltz, Mitzi; Schippers, Alice

2016-06-01

This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants, parents and caregivers, findings included that parent-initiated supported housing schemes made steps towards stimulating self-advocacy and autonomy for tenants. However, overprotective and paternalistic attitudes expressed by a significant number of parents, as well as structural constraints affecting the living schemes, created obstacles to tenants' personal development. The study calls for consideration of interdependence as a model for the relationship of parents and adult offspring with disabilities. The benefits and tensions inherent within this relationship must be taken into consideration during inclusive community building. © The Author(s) 2016.

The administrative population report on children with developmental delays in Taiwan, 2003 through 2007.

PubMed

Lin, Jin-Ding; Yen, Chia-Feng; Wu, Jia-Ling; Kang, Shih-Wan

2009-01-01

This paper was a population study with developmental delays and it included an examination of the trends the overtime change trend and reported channels of this group of people in Taiwan. We analyzed data for the present study mainly from the Department of Statistics, Ministry of the Interiors, Taipei, Taiwan: "Number of early intervention for children with developmental delays in Taiwan" from 2003 through 2007. The reported number of children with developmental delays slightly increased from 13,231 to 14,250 (increase rate=7.7%) from the year of 2003 through 2007 in Taiwan. More than one-half of children with developmental delays were reported during the age 3-5 years. Aged 0-2 group has the highest increasing reported numbers in the previous 5 years which changed dramatically increased from 4139 (31.3%) in 2003 to 6201 (43.5%) in 2007 (increase rate=49.8%). The medical care setting was the main reported channel of the children with developmental delays and the results also showed that the reported prevalence of the aged 0-2 developmentally delayed children was 57.4-102.2 per 10,000 children; aged 3-5 was 79.0-105.1 per 10,000 children from the year 2003-2007 in Taiwan. The present concluded that early intervention based on the precise affected population would provide important supports for families of children with developmental delays. Therefore, the health care system should be strengthened to increase the proportion of children identified at the earlier age and to decrease the variability in the age at identification for most of the conditions of children with developmental delays.

Infantile spasms (West syndrome): update and resources for pediatricians and providers to share with parents.

PubMed

Wheless, James W; Gibson, Patricia A; Rosbeck, Kari Luther; Hardin, Maria; O'Dell, Christine; Whittemore, Vicky; Pellock, John M

2012-07-25

Infantile spasms (IS; West syndrome) is a severe form of encephalopathy that typically affects infants younger than 2 years old. Pediatricians, pediatric neurologists, and other pediatric health care providers are all potentially key early contacts for families who have an infant with IS. The objective of this article is to assist pediatric health care providers in the detection of the disease and in the counseling and guidance of families who have an infant with IS. Treatment guidelines, consensus reports, and original research studies are reviewed to provide an update regarding the diagnosis and treatment of infants with IS. Web sites were searched for educational and supportive resource content relevant to providers and families of patients with IS. Early detection of IS and pediatrician referral to a pediatric neurologist for further evaluation and initiation of treatment may improve prognosis. Family education and the establishment of a multidisciplinary continuum of care are important components of care for the majority of patients with IS. The focus of the continuum of care varies across diagnosis, initiation of treatment, and short- and long-term needs. Several on-line educational and supportive resources for families and caregivers of patients with IS were identified. Given the possibility of poor developmental outcomes in IS, including the emergence of other seizure disorders and cognitive and developmental problems, early recognition, referral, and treatment of IS are important for optimal patient outcomes. Dissemination of and access to educational and supportive resources for families and caregivers across the lifespan of the child with IS is an urgent need. Pediatric health care providers are well positioned to address these needs.

Care Experiences of Adults With a Dual Diagnosis and Their Family Caregivers

PubMed Central

Nicholas, David B.; Calhoun, Avery; McLaughlin, Anne Marie; Shankar, Janki; Kreitzer, Linda; Uzande, Masimba

2017-01-01

Individuals diagnosed with developmental disability and mental illness (a “dual diagnosis”) contend with multiple challenges and system-related barriers. Using an interpretive description approach, separate qualitative interviews were conducted with adults with a dual diagnosis (n = 7) and their caregiving parents (n = 8) to examine care-related experiences. Results indicate that individuals with a dual diagnosis and their families experience misunderstanding and stigma. Families provide informal complex care amid insufficient and uncoordinated services but are often excluded from formal care planning. A lack of available funding and services further impedes care. While negative care experiences are reported as prevalent, participants also describe instances of beneficial care. Overall, findings indicate a lack of sufficiently targeted resources, leaving families to absorb system-related care gaps. Recommendations include person- and family-centered care, navigation support, and capacity building. Prevention and emergency and crisis care services, along with housing, vocation, and other supports, are needed. Practice and research development regarding life span needs are recommended. PMID:28804747

Minnesota Early Childhood Indicators of Progress: A Resource Guide.

ERIC Educational Resources Information Center

2000

Stressing the importance of collective efforts among families, early childhood care and education programs, communities, and policymakers in supporting the learning and development of children, this resource guide provides a framework for understanding and communicating a common set of developmentally appropriate expectations for young children…

Supporting Young Learners 3: Ideas for Child Care Providers and Teachers.

ERIC Educational Resources Information Center

Brickman, Nancy Altman, Ed.

The High/Scope Curriculum is a developmentally based approach to early childhood education. This curriculum's "Extensions" newsletter, in which the articles in this collection first appeared, informs curriculum users about new development, relating to the High/Scope "open framework" curriculum. This collection divides the…

Supporting Young Learners: Ideas for Preschool and Day Care Providers.

ERIC Educational Resources Information Center

Brickman, Nancy Altman, Ed.; Taylor, Lynn Spencer, Ed.

The High/Scope Curriculum is a developmentally based approach to early childhood education. The curriculum's "Extensions" newsletter, in which the articles in this collection first appeared, informs curriculum users about new developments relating to the High/Scope "open framework" curriculum. The articles are presented in…

Supporting Young Learners 2: Ideas for Child Care Providers and Teachers.

ERIC Educational Resources Information Center

Brickman, Nancy Altman, Ed.

The High/Scope Curriculum is a developmentally based approach to early childhood education. The curriculum's "Extensions" newsletter, in which the articles in this collection first appeared, informs curriculum users about new development, relating to the High/Scope "open framework" curriculum. This collection divides the…

Pediatrician identification of Latino children at risk for autism spectrum disorder.

PubMed

Zuckerman, Katharine E; Mattox, Kimber; Donelan, Karen; Batbayar, Oyundari; Baghaee, Anita; Bethell, Christina

2013-09-01

Latino-white disparities in age at autism spectrum disorder (ASD) diagnosis may be modified by primary care pediatrician (PCP) practices and beliefs. The objectives of this study were to assess ASD and developmental screening practices, attitudes toward ASD identification in Latino children, and barriers to ASD identification for Latino children, in a sample of 267 California PCPs. In mail-based PCP survey, we assessed rates of bilingual general developmental and ASD screening, perceptions of parent ASD knowledge in Latino and white families, reports of difficulty assessing for ASDs in Latino and white children, and perceptions of barriers to early ASD identification for Latinos. Although 81% of PCPs offered some form of developmental screening, 29% of PCPs offered Spanish ASD screening per American Academy of Pediatrics guidelines, and only 10% offered both Spanish general developmental and Spanish ASD screening per American Academy of Pediatrics guidelines. Most PCPs thought that Latino (English and Spanish primary family language) parents were less knowledgeable about ASDs than white parents. PCPs had more difficulty assessing ASD risk for Latino children with Spanish primary family language than for white children, even when the PCP conducted recommended ASD screening or had >25% Latino patients. The most frequent barrier to ASD identification in Latinos was access to developmental specialists. Multiple factors in the primary care setting may contribute to delayed ASD identification for Latinos. Promoting language-appropriate screening, disseminating culturally appropriate ASD materials to Latino families, improving the specialist workforce, and providing PCP support in screening and referral of Latino children may be important ways to reduce racial and ethnic differences in care.

Caregiver burden and needs of dementia caregivers in Thailand: a cross-sectional study.

PubMed

Muangpaisan, Weerasak; Praditsuwan, Rungnirand; Assanasen, Jintana; Srinonprasert, Varalak; Assantachai, Prasert; Intalapaporn, Somboon; Chatthanawaree, Wichai; Dajpratham, Piyapat; Kuptniratsaikul, Vilai; Pisansalakij, Doojpratna

2010-05-01

To identify the burdens of Thai dementia caregivers and to determine the services that could support them in this function. The authors surveyed 88 dementia caregivers attending "Caregiver Day". The questionnaire contained Caregiver Burden Inventory. The answers range from "not at all descriptive" (zero) to "very descriptive" (4). The authors also explored baseline characteristics of caregivers and care recipients as well as caregiver's needs of a supporting system. There was an 82% response rate. Responses in time-dependence burden distributed almost equally in the five possible scales. In developmental and physical burden, caregivers rate scores mainly from 0-2. The scores in social and emotional burden ranged mainly between 0-1. Dependency in basic activities of daily living correlated with higher caregiver burden (odd ratio 7.48, 95% confidence interval 1.42-39.53, p = 0.02), while sex and kinship did not. The top three caregiver's needs were 1) caregiver education and training, 2) telephone line provided for caregiver consultation and 3) special system in a hospital provided for dementia patients to have rapid access to see a doctor. Caring for dementia patients can lead to high caregiver burden, particularly those caring for dependent patients. Physical and developmental burdens are affected more than social and emotional burdens. Culture, relationship quality and resources (coping, outlook on life and social support) might be contributing factors of this difference.

Practice Parameter for the Assessment and Treatment of Children and Adolescents with Enuresis

ERIC Educational Resources Information Center

Fritz, Gregory; Rockney, Randy

2004-01-01

Enuresis is a symptom that is frequently encountered in child psychiatric evaluations. Careful assessment is required to identify specific urologic, developmental, psychosocial, and sleep-related etiologies. For most children with enuresis, however, a specific etiology cannot be determined. Treatment then involves supportive approaches,…

Differences in Child Care Quality for Children with and without Disabilities

ERIC Educational Resources Information Center

Grisham-Brown, Jennifer; Cox, Megan; Gravil, Meg; Missall, Kristen

2010-01-01

Research Findings: Federal, state, and local agencies legislate and support inclusive settings for the education of young children with disabilities. Recommended practices outline critical elements for meeting the educational and developmental needs of children with and without disabilities in inclusive settings, and minimal and essential quality…

Family Support and Education

ERIC Educational Resources Information Center

Goldstein, Lou Ann

2013-01-01

Family involvement is essential to the developmental outcome of infants born into Neonatal Intensive Care Unit (NICU). In this article, evidence has been presented on the parent's perspective of having an infant in the NICU and the context of family. Key points to an educational assessment are also reviewed. Throughout, the parent's concerns and…

Social support received by women with intellectual and developmental disabilities during pregnancy and childbirth: An exploratory qualitative study.

PubMed

Potvin, Lynne A; Brown, Hilary K; Cobigo, Virginie

2016-06-01

this study aims to contribute to the development of a conceptual framework that will inform maternity care improvements for expectant mothers with intellectual and developmental disabilities (IDD) by exploring the structure, functions, and perceived quality of social support received by women with IDD during pregnancy and childbirth. using a grounded theory approach, we conducted an exploratory study set in Ontario, Canada in 2015. the sample included four adult women with IDD who had given birth in the last five years. data were collected using semi-structured interviews. the structure of social support received by women with IDD consisted of both formal and informal sources, but few or no friendships. Women with IDD reported high levels of informational and instrumental support and low levels of emotional support and social companionship. However, a high level of available support was not always perceived as beneficial. Emergent core categories suggest that social support is perceived as most effective when three conditions are met: (1) support is accessible, (2) support is provided by individuals expressing positive attitudes towards the pregnancy, and (3) autonomy is valued. our study confirms and identifies important gaps in the social support received by expectant mothers with IDD. Women with IDD currently lack accessible informational support, emotional support, and social companionship during pregnancy and childbirth. Additional findings regarding the structure and functions of social support are presented, and a preliminary conceptual framework of effective social support during pregnancy and childbirth, as perceived by women with IDD is also proposed. Findings suggest that increasing support accessibility should be a social and clinical priority; however, maternity care providers should be aware of stigmatizing attitudes and respect the autonomy of pregnant women with IDD as they prepare for motherhood. Copyright © 2016 Elsevier Ltd. All rights reserved.

Rethinking family-centred care for the child and family in hospital.

PubMed

Tallon, Mary M; Kendall, Garth E; Snider, Paul D

2015-05-01

This paper presents and discusses an alternative model of family-centred care (FCC) that focuses on optimising the health and developmental outcomes of children through the provision of appropriate support to the child's family. The relevance, meaning and effectiveness of FCC have been challenged recently. Studies show that parents in hospital often feel unsupported, judged by hospital staff and uncertain about what care they should give to their child. With no convincing evidence relating FCC to improved child health outcomes, it has been suggested that FCC should be replaced with a new improved model to guide the care of children in hospital. This integrative review discusses theory and evidence-based literature that supports the practice of an alternative model of FCC that is focused on the health and developmental outcomes of children who are seriously ill, rather than the organisational requirements of children's hospitals. Theories and research findings in a wide range of disciplines including epidemiology, psychology, sociology, anthropology and neuroscience were accessed for this discussion. Nursing literature regarding partnership building, communication and FCC was also accessed. This paper discusses the benefits of applying a bioecological model of human development, the family and community resource framework, the concepts of allostatic load and biological embedding, empowerment theory, and the nurse-family partnership model to FCC. While there is no direct evidence showing that the implementation of this alternative model of FCC in the hospital setting improves the health and developmental outcomes of children who are seriously ill, there is a great deal of evidence from community nursing practice that suggests it is very likely to do so. Application of these theoretical concepts to practice has the potential to underpin a theory of nursing that is relevant for all nurses irrespective of the age of those they care for and the settings within which they work. © 2015 John Wiley & Sons Ltd.

The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy.

PubMed

Tartaglia, Nicole; Howell, Susan; Wilson, Rebecca; Janusz, Jennifer; Boada, Richard; Martin, Sydney; Frazier, Jacqueline B; Pfeiffer, Michelle; Regan, Karen; McSwegin, Sarah; Zeitler, Philip

2015-01-01

Individuals with sex chromosome aneuploidies (SCAs) are born with an atypical number of X and/or Y chromosomes, and present with a range of medical, developmental, educational, behavioral, and psychological concerns. Rates of SCA diagnoses in infants and children are increasing, and there is a need for specialized interdisciplinary care to address associated risks. The eXtraordinarY Kids Clinic was established to provide comprehensive and experienced care for children and adolescents with SCA, with an interdisciplinary team composed of developmental-behavioral pediatrics, endocrinology, genetic counseling, child psychology, pediatric neuropsychology, speech-language pathology, occupational therapy, nursing, and social work. The clinic model includes an interdisciplinary approach to care, where assessment results by each discipline are integrated to develop unified diagnostic impressions and treatment plans individualized for each patient. Additional objectives of the eXtraordinarY Kids Clinic program include prenatal genetic counseling, research, education, family support, and advocacy. Satisfaction surveys were distributed to 496 patients, and responses were received from 168 unique patients. Satisfaction with the overall clinic visit was ranked as "very satisfied" in 85%, and as "satisfied" in another 9.8%. Results further demonstrate specific benefits from the clinic experience, the importance of a knowledgeable clinic coordinator, and support the need for similar clinics across the country. Three case examples of the interdisciplinary approach to assessment and treatment are included.

Mortality of People with Intellectual and Developmental Disabilities from Select US State Disability Service Systems and Medical Claims Data.

PubMed

Lauer, Emily; McCallion, Philip

2015-09-01

Monitoring population trends including mortality within subgroups such as people with intellectual and developmental disabilities and between countries provides crucial information about the population's health and insights into underlying health concerns and the need for and effectiveness of public health efforts. Data from both US state intellectual and developmental disabilities service system administrative data sets and de-identified state Medicaid claims were used to calculate average age at death and crude mortality rates. Average age at death for people in state intellectual and developmental disabilities systems was 50.4-58.7 years and 61.2-63.0 years in Medicaid data, with a crude adult mortality rate of 15.2 per thousand. Age at death remains lower and mortality rates higher for people with intellectual and developmental disabilities. Improved case finding (e.g. medical claims) could provide more complete mortality patterns for the population with intellectual and developmental disabilities to inform the range of access and receipt of supportive and health-related interventions and preventive care. © 2015 John Wiley & Sons Ltd.

Transitioning to Adulthood from Foster Care.

PubMed

Lee, Terry; Morgan, Wynne

2017-04-01

Transitional age foster youth do not typically receive the types of family supports their nonfoster peers enjoy. Many foster youth experience multiple adversities and often fare worse than nonfoster peers on long-term functional outcomes. Governments increasingly recognize their responsibility to act as parents for state dependents transitioning to adulthood and the need to provide services to address social/emotional supports, living skills, finances, housing, education, employment, and physical and mental health. More research is needed to inform the development of effective programs. Transitional age foster youth benefit from policies promoting a developmentally appropriate, comprehensive, and integrated transition system of care. Copyright © 2016 Elsevier Inc. All rights reserved.

HELP for behaviours that challenge in adults with intellectual and developmental disabilities

PubMed Central

Green, Laurie; McNeil, Karen; Korossy, Marika; Boyd, Kerry; Grier, Elizabeth; Ketchell, MacKenzie; Loh, Alvin; Lunsky, Yona; McMillan, Shirley; Sawyer, Amanda; Thakur, Anupam; Bradley, Elspeth

2018-01-01

Abstract Objective To provide primary care physicians with an understanding of the causes of behaviours that challenge (BTC) in adults with intellectual and developmental disabilities (IDD), as presented in the 2018 Canadian consensus guidelines for primary care of adults with IDD; to offer a systematic approach to the assessment and treatment of such behaviours; and to link to tools to support these assessments. Sources of information This review elaborates upon guidelines 26 to 29 in the mental health section of the 2018 Canadian consensus guidelines. Several of the authors participated in the development of these guidelines, which were based on literature searches and interdisciplinary input. Main message Most adults with IDD are followed by primary care providers but they comprise a small proportion of primary care practices. Unique ways of communicating needs, diagnostic queries, and BTC are common in this population. This complexity can lead to missed diagnoses and inappropriate antipsychotic medication use with attendant risks. This article presents a systematic approach, HELP, to the assessment and treatment of factors of Health, Environment, Lived experience, and Psychiatric conditions that can lead to BTC and includes tools to support these assessments. Conclusion A structured approach to the assessment and treatment of BTC in adults with IDD helps family physicians provide guideline-directed, individualized care to this population. This includes a systematic evaluation using the HELP framework that takes place over multiple visits. A team of health professionals might be needed for optimal care, but these resources are not routinely available across Canada. PMID:29650741

Factors Influencing Institutional-Based Pediatric Rehabilitation Services among Caregivers of Children with Developmental Delay in Southwestern Rajasthan.

PubMed

Mishra, Kriti; Siddharth, V

2018-01-01

A limited number of caregivers of children with developmental delay access rehabilitation facilities in India. The study explored utilization of rehabilitation services at a tertiary care setup in southwestern Rajasthan and various factors influencing it. The aim of this study is to explore rehabilitation service utilization among children with developmental delay at a tertiary care setup and to ascertain factors that influence this pattern. This study was conducted at the department of physical medicine and rehabilitation at tertiary care setup. This was an observational study. Children with developmental delay who were advised institutional-based rehabilitation were identified over span of 1 year. Those who failed to return for rehabilitation after the first visit were interviewed telephonically. The interview had semi-structured open-ended questions about their reasons for inability to avail services. SPSS statistics 22 was used for descriptive analysis and correlation of variables. Of 230 children with developmental delay visiting department in 1-year duration, 48 took regular rehabilitation. Parents of 129 children with complete records were asked regarding discontinuation. Factors cited by majority were long distance from institute and service at hospital. Other reasons for discontinuation were related to belief system, family issues, time issues, socioeconomic factors, etc. Socioeconomic status was significantly associated with parental education (C = 0.488, P = 0.000) and financial issues. Location of family had significant association with long distance (C = 0.315, P = 0.000), parental education (C = 0.251, P = 0.003), and belief system (C = 0.265, P = 0.002). Distance from institute and quality of hospital service determined rehabilitation service use at a tertiary institute. Other factors such as socioeconomic status, family support, and social belief system must also be addressed while delivering institutional rehabilitation to children.

Summary of the Practice Parameter for the Assessment and Treatment of Children and Adolescents with Enuresis

ERIC Educational Resources Information Center

Fritz, Gregory; Rockney, Randy

2004-01-01

Enuresis is a symptom that is frequently encountered in child psychiatric evaluations. Careful assessment is required to identify specific urologic, developmental, psychosocial, and sleep-related etiologies. For most children with enuresis, however, a specific etiology cannot be determined. Treatment then involves supportive approaches,…

Integration of the Newborn Behavioral Observations (NBO) System into Care Settings for High-Risk Newborns

ERIC Educational Resources Information Center

McManus, Beth M.

2015-01-01

Research suggests that early self-regulatory difficulties among high-risk newborns can lead to poor interactional difficulties and negative long-term cognitive and social-emotional outcomes if not identified and treated early. This article describes why an individualized, developmentally supportive, relationship-based program, such as the Newborn…

Choice-Making among Medicaid HCBS and ICF/MR Recipients in Six States

ERIC Educational Resources Information Center

Lakin, K. Charlie; Doljanac, Robert; Byun, Soo-Yong; Stancliffe, Roger; Taub, Sarah; Chiri, Giuseppina

2008-01-01

Choice in everyday decisions and in support-related decisions was addressed among 2,398 adults with intellectual and developmental disabilities receiving Medicaid Home and Community Based Services (HCBS) and Intermediate Care Facility (ICF/MR) services and living in nonfamily settings in six states. Everyday choice in daily life and in…

Promoting Community-Based Services: Implications for Program Design, Implementation, and Public Policy.

ERIC Educational Resources Information Center

Powers, Michael D.

1986-01-01

Program design, implementation, and public policy issues are discussed for five urban community-based programs for the developmentally disabled: (1) direct services in intermediate care facilities; (2) a High Risk Infant project; (3) group home consultative services; (4) training for support services to adoptive families; (5) a national…

Developing Norms for the California Resilience Youth Development Module: Internal Assets and School Resources Subscales

ERIC Educational Resources Information Center

Furlong, Michael J.; Ritchey, Kristin M.; O'Brennan, Lindsey M.

2009-01-01

Resilience and other positive psychological constructs are gaining attention among school psychologists. Theoretically, external assets (e.g., support from caring adults, participation in meaningful activities) help to meet youths' basic developmental needs, which, in turn, promote the growth of internal assets (e.g., ability to problem solve,…

Using metaphor to translate the science of resilience and developmental outcomes.

PubMed

Kendall-Taylor, Nathaniel; Haydon, Abigail

2016-07-01

Developmental scientists have used a variety of linguistic devices to communicate the science of resilience, but their effectiveness at improving understanding and expanding support for evidence-based social policies has not been empirically tested. We describe the process of developing, testing, and refining an Explanatory Metaphor to communicate the science of resilience to the public and policymakers. We argue that public understanding is key to bridging the research-to-practice divide and that communications is a social science endeavor in its own right that requires careful empirical research. © The Author(s) 2014.

Diabetes in people with an intellectual disability: a systematic review of prevalence, incidence and impact.

PubMed

McVilly, K; McGillivray, J; Curtis, A; Lehmann, J; Morrish, L; Speight, J

2014-08-01

To establish the prevalence and incidence of type 1 and type 2 diabetes in people with an intellectual and developmental disability and determine their impact on health and well-being and to appraise the evidence available to inform good practice in diabetes management for people with intellectual and developmental disabilities. We conducted separate searches of multiple databases (EMBASE, CINAHL, MEDLINE, PsycINFO, SCOPUS, Web of Science, PUBMED and Cochrane Library) to find relevant articles. A total of 13 studies were identified: 13 addressed the prevalence of diabetes in people with intellectual and developmental disability, three addressed the impact of diabetes on their health and well-being and three addressed the management of diabetes. The prevalence of diabetes in people with intellectual and developmental disability remains uncertain, and the incidence of diabetes in this group of people is unknown. There is some evidence to support the assertion that people with intellectual and developmental disability might be at greater risk of diabetes than the general population. Overall, the quality of the evidence on which to base prevention and management strategies is variable. There is a paucity of research focusing on the prevalence, incidence and impact of diabetes among people with intellectual and developmental disability. Further research is needed to inform policy and practice in this area and, in particular, work is needed to develop methodologies, evaluation tools, educational resources and diabetes care support services appropriate to the needs of people with intellectual and developmental disability. © 2014 The Authors. Diabetic Medicine © 2014 Diabetes UK.

The Medical Transition from Pediatric to Adult-Oriented Care: Considerations for Child and Adolescent Psychiatrists.

PubMed

Hart, Laura C; Maslow, Gary

2018-01-01

More adolescents and young adults are surviving previously fatal childhood illness and need support to transition from pediatric care to adult-oriented care. There are many barriers, but guidelines and tools assist providers with emphasis on gradually addressing transition with patients and families. Child and adolescent psychiatrists should be particularly attuned to the needs of adolescents with previously identified mental illness who are at high risk of falling out of regular care during transition. Providers are also uniquely suited to address the needs of adolescents and young adults with intellectual and developmental disabilities. Copyright © 2017 Elsevier Inc. All rights reserved.

The science of early adversity: is there a role for large institutions in the care of vulnerable children?

PubMed

Berens, Anne E; Nelson, Charles A

2015-07-25

It has been more than 80 years since researchers in child psychiatry first documented developmental delays among children separated from family environments and placed in orphanages or other institutions. Informed by such findings, global conventions, including the 1989 UN Convention on the Rights of the Child, assert a child's right to care within a family-like environment that offers individualised support. Nevertheless, an estimated 8 million children are presently growing up in congregate care institutions. Common reasons for institutionalisation include orphaning, abandonment due to poverty, abuse in families of origin, disability, and mental illness. Although the practice remains widespread, a robust body of scientific work suggests that institutionalisation in early childhood can incur developmental damage across diverse domains. Specific deficits have been documented in areas including physical growth, cognitive function, neurodevelopment, and social-psychological health. Effects seem most pronounced when children have least access to individualised caregiving, and when deprivation coincides with early developmental sensitive periods. Offering hope, early interventions that place institutionalised children into families have afforded substantial recovery. The strength of scientific evidence imparts urgency to efforts to achieve deinstitutionalisation in global child protection sectors, and to intervene early for individual children experiencing deprivation. Copyright © 2015 Elsevier Ltd. All rights reserved.

Maternal well-being and its association to risk of developmental problems in children at school entry

PubMed Central

2010-01-01

Background Children at highest risk of developmental problems benefit from early identification and intervention. Investigating factors affecting child development at the time of transition to school may reveal opportunities to tailor early intervention programs for the greatest effectiveness, social benefit and economic gain. The primary objective of this study was to identify child and maternal factors associated with children who screened at risk of developmental problems at school entry. Methods An existing cohort of 791 mothers who had been followed since early pregnancy was mailed a questionnaire when the children were aged four to six years. The questionnaire included a screening tool for developmental problems, an assessment of the child's social competence, health care utilization and referrals, and maternal factors, including physical health, mental health, social support, parenting morale and sense of competence, and parenting support/resources. Results Of the 491 mothers (62%) who responded, 15% had children who were screened at high risk of developmental problems. Based on a logistic regression model, independent predictors of screening at high risk for developmental problems at age 5 were male gender (OR: 2.3; 95% CI: 1.3, 4.1), maternal history of abuse at pregnancy (OR: 2.4; 95% CI: 1.3, 4.4), and poor parenting morale when the child was 3 years old (OR: 3.9; 95% CI: 2.1, 7.3). A child with all of these risk factors had a 35% predicted probability of screening at high risk of developmental problems, which was reduced to 13% if maternal factors were favourable. Conclusions Risk factors for developmental problems at school entry are related to maternal well being and history of abuse, which can be identified in the prenatal period or when children are preschool age. PMID:20338052

Status of simulation in health care education: an international survey.

PubMed

Qayumi, Karim; Pachev, George; Zheng, Bin; Ziv, Amitai; Koval, Valentyna; Badiei, Sadia; Cheng, Adam

2014-01-01

Simulation is rapidly penetrating the terrain of health care education and has gained growing acceptance as an educational method and patient safety tool. Despite this, the state of simulation in health care education has not yet been evaluated on a global scale. In this project, we studied the global status of simulation in health care education by determining the degree of financial support, infrastructure, manpower, information technology capabilities, engagement of groups of learners, and research and scholarly activities, as well as the barriers, strengths, opportunities for growth, and other aspects of simulation in health care education. We utilized a two-stage process, including an online survey and a site visit that included interviews and debriefings. Forty-two simulation centers worldwide participated in this study, the results of which show that despite enormous interest and enthusiasm in the health care community, use of simulation in health care education is limited to specific areas and is not a budgeted item in many institutions. Absence of a sustainable business model, as well as sufficient financial support in terms of budget, infrastructure, manpower, research, and scholarly activities, slows down the movement of simulation. Specific recommendations are made based on current findings to support simulation in the next developmental stages.

Long-term care for people with developmental disabilities: a critical analysis.

PubMed

Palley, H A; Van Hollen, V

2000-08-01

This article explores how the trends toward long-term community care affecting people with developmental disabilities developed. Appropriateness of care and quality of life issues are discussed. The article also reviews the development of long-term care for frail and disabled elderly people and explores the arguments for a continuum of care that have developed in this area. The authors conclude that future policies with respect to meeting long-term care needs for people with developmental disabilities must be addressed flexibly on an individual basis, related to individual needs, and must provide a continuum of care services.

Spending by California’s Department of Developmental Services for Persons with Autism across Demographic and Expenditure Categories

PubMed Central

Leigh, J. Paul; Grosse, Scott D.; Cassady, Diana; Melnikow, Joy; Hertz-Picciotto, Irva

2016-01-01

Background Few autism spectrum disorder (ASD) studies have estimated non-medical costs for treatment or addressed possible differences in provision of services across gender, race-ethnic, age or demographic or expenditure categories, especially among adults. Methods The California Department of Developmental Services (CDDS) provides services to residents with developmental disabilities. CDDS provided aggregate data on primarily non-medical spending for fiscal year 2012–2013 for persons with ASD with or without intellectual disability (ID) (main sample, n = 42,274), and two sub-samples: ASD only (n = 30,164), and ASD+ID (n = 12,110). Demographic variables included sex, age and race-ethnicity. Spending categories included Employment Support, Community Care Facilities, Day Care, Transportation, and in-home and out-of-home Respite. Results Per-person spending for males and females were approximately the same: $10,488 and $10,791 for males and females for ages 3–17 and $26,491 and $26,627 for ages 18+. Among race/ethnicity categories, the ranking from highest to lowest among ages 3–17 was white non-Hispanics ($11,480), Asian non-Hispanics ($11,036), “Others” ($11,031), Hispanics ($9,571), and African-American non-Hispanics ($9,482). For ages 18+, the ranking was whites ($31,008), African-Americans ($26,831), “Others” ($25,395), Asians ($22,993), and Hispanics ($18,083). The ASD+ID sub-sample exerted disproportionate influence on findings from the main sample for persons 18+. Combining all ages, the top two expenditure categories for per-person spending were Community Care Facilities ($43,867) and Day Care ($11,244). For most adult age groups, the percentage of recipients participating were highest for Day Care (44.9% - 62.4%) and Transportation (38.6% - 50.9%). Per-person spending for Day Care, Transportation, and Employment Support was relatively low for children but relatively high for adults. Conclusion White non-Hispanics received the highest per-person spending and Hispanics among the least. Amounts within spending categories varied considerably across age groups. Our estimates may be useful as baseline measures for stakeholders preparing for increasing ASD prevalence, especially among adults. PMID:27015098

Developmental Surveillance and Screening Practices by Pediatric Primary Care Providers: Implications for Early Intervention Professionals

ERIC Educational Resources Information Center

Porter, Sallie; Qureshi, Rubab; Caldwell, Barbara Ann; Echevarria, Mercedes; Dubbs, William B.; Sullivan, Margaret W.

2016-01-01

This study used a survey approach to investigate current developmental surveillance and developmental screening practices by pediatric primary care providers in a diverse New Jersey county. A total of 217 providers were contacted with a final sample size of 57 pediatric primary care respondents from 13 different municipalities. Most providers…

Family Care for Persons with Developmental Disabilities: A Growing Commitment.

ERIC Educational Resources Information Center

Agosta, J. M., Ed.; Bradley, V. J., Ed.

The report presents findings from a study of family-based care for persons with developmental disabilities. The first of four parts introduces the problems of family-based care and presents perspectives of parents and of persons with developmental disabilities. Part 2, on responding to the needs of families, includes a review of historical and…

Optimizing the Office Visit for Adolescents with Special Health Care Needs.

PubMed

Nathawad, Rita; Hanks, Christopher

2017-08-01

Youth with special health care needs (YSHCN) experience health care disparities and often need additional support to receive optimal medical care, particularly in adolescence as they prepare to transition to adult care. Many medical practices struggle to address their needs. Here, we discuss approaches to improve medical care in office-based settings for YSHCN. Office visits can be optimized by training staff in developmentally appropriate care and ensuring that the physical office space facilitates care. Participating in previsit preparation, including managing patient registries of YSHCN, engaging in regular team huddles, and incorporating previsit planning, can improve preparation and ensure that important needs are not overlooked. Additionally, approaches to improve patient and medical provider comfort with office visits with YSHCN, including approaches to measuring vital signs, examining patients, and communicating with patients with various disabilities, are reviewed. Finally, we discuss methods of supporting adolescents with special health care needs in developing self-management skills that will allow them to be better prepared to enter adult health care settings when appropriate. Although YSHCN can present challenges to medical teams, their care can be improved by developing office-based changes and processes to support improved care for these patients. This may help overcome the health care disparities they experience and increase comfort for all members of the medical team. Copyright © 2017. Published by Elsevier Inc.

Services for children with developmental co-ordination disorder: an evaluation against best practice principles.

PubMed

Pentland, Jacqueline; Maciver, Donald; Owen, Christine; Forsyth, Kirsty; Irvine, Linda; Walsh, Mike; Crowe, Miriam

2016-01-01

The National Health Service in Scotland published a best practice framework to support occupational therapists and physiotherapists to deliver effective services for children with developmental co-ordination disorder (DCD); however, adherence is variable. To highlight areas for development, this study compared the care pathway within a paediatric DCD service against the NHS Scotland framework. A partnership of researchers and clinicians based in the United Kingdom conducted a qualitative study with 37 participants (N = 13 interview participants, N = 24 workshop participants). In-depth interviews and/or workshops were used to map the DCD service against the NHS framework. Identified gaps were aligned with four key stages of the care pathway. Qualitative analysis software was used to analyse the data. Core principles to guide future development were identified for each phase of the pathway. These core principles related to the NHS framework and focused on issues such as involving the family, defining clear pathways and enhancing children's participation. Participants identified potential strategies for service improvement such as developing community-based interventions and information provision. Challenges when providing services for children with DCD include confusing service pathways and poor partnership working. It is, therefore, important that clinicians utilise collaborative working strategies that support children's participation. There are numerous challenges related to the implementation of best practice principles into the provision of therapy services for children with developmental coordination disorder (DCD). It is important that AHPs seek ways of engaging parents and educational professionals at all stages of the care pathway in order to ensure optimum service provision for the child. Addressing participation is an important aspect and community-based strategies may be particularly beneficial, both as a preventative activity and as an intervention approach.

Health Care of Latino Children with Autism and Other Developmental Disabilities: Quality of Provider Interaction Mediates Utilization

ERIC Educational Resources Information Center

Parish, Susan; Magana, Sandra; Rose, Roderick; Timberlake, Maria; Swaine, Jamie G.

2012-01-01

This study examines access to, utilization of, and quality of health care for Latino children with autism and other developmental disabilities. We analyze data from the National Survey of Children with Special Health Care Needs (N = 4,414 children with autism and other developmental disabilities). Compared with White children, Latino children with…

Adolescent cancer patients' perceived quality of cancer care: The roles of patient engagement and supporting independence.

PubMed

Siembida, Elizabeth J; Kadan-Lottick, Nina S; Moss, Kerry; Bellizzi, Keith M

2018-04-10

A lack of focus on variation in engagement among cancer populations of differing developmental stages led us to examine the associations between patient engagement, the patient-provider relationship, cognitive development, readiness to transition to adulthood (transitional readiness) and perceived quality of care. A sample of 101 adolescent cancer patients (diagnosed 10-20 years) completed survey items concerning patient engagement, dimensions of the patient-provider relationship, cognitive development, transitional readiness, and demographic characteristics using an iPad/tablet during a routine clinic visit. Patient engagement was not significantly associated with perceived quality of care (b = .02, 95% CI: -0.06, 0.11). Instead, adolescents with providers that supported their independence (b = .34, 95% CI: 0.17, 0.52) were significantly more likely to perceive higher quality care. Supportive patient-provider relationships are an integral part of adolescents' perceptions of quality of care. Adolescents are still gaining important skills for navigating the medical system, and the patient-provider relationship may provide an important scaffolding relationship to help adolescents build independence in their treatment experience. Identifying potential mechanisms through which adolescents can provide their opinion, ask questions, and participate in their treatment plan will help in supporting adolescent independence and improve quality of care. Published by Elsevier B.V.

The influence of early intervention, informal support and the family environment on trajectories of competence for fathers raising children with developmental disabilities.

PubMed

Crossman, Morgan K; Parish, Susan L; Hauser-Cram, Penny; Garcia, Dolores Acevedo; Warfield, Marji Erickson

2018-05-21

Scant research disentangles the relationship between parenting competence, early intervention (EI) services, the family environment and informal support among fathers of children with developmental disabilities. (1) To determine the trajectory of parental competence for fathers of children with DD from age 3 to age 15. (2) Controlling for child and family characteristics, determine the main effects of the family environment, informal support, and EI services on paternal competence when their child with a developmental disability was age 3. (3) To determine whether there were lasting effects of the family environment, informal support, and the EI service system on differences in paternal competence over time. This study used multilevel modeling to analyze longitudinal data from 93 American fathers from the Early Intervention Collaborative Study. There was no significant change over time in paternal competence after controlling for various covariates. Fathers who initially reported low levels of competence when their child was three reported continuously lower competence over time. Family relationships, positive supports, and perceived helpfulness of home visits were significant predictors of paternal competence at age three. Implications for programs and policy include developing and adopting rigorous ways to measure and carefully monitor service provision, including assessments of paternal competence, family relationships and informal supports at the start of early intervention, and fostering continuous collaborations between providers, researchers and clinicians to address challenges in data collection. Copyright © 2018 Elsevier Ltd. All rights reserved.

Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions.

PubMed

Vohra, Rini; Madhavan, Suresh; Sambamoorthi, Usha; St Peter, Claire

2014-10-01

This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3-17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009-2010 National Survey of Children with Special Health Care Needs was utilized to examine the association between child's special needs condition and three outcomes (N = 18,136): access to services (difficulty using services, difficulty getting referrals, lack of source of care, and inadequate insurance coverage), quality of care (lack of care coordination, lack of shared decision making, and no routine screening), and family impact (financial, employment, and time-related burden). Multivariate logistic regressions were performed to compare caregivers of children with autism spectrum disorders to caregivers of children with developmental disabilities (cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression), or both developmental disabilities and mental health conditions. Caregivers of children with autism spectrum disorders were significantly more likely to report difficulty using services, lack of source of care, inadequate insurance coverage, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both. © The Author(s) 2013.

A Warranted Domain Theory and Developmental Framework for a Web-Based Treatment in Support of Physician Wellness

ERIC Educational Resources Information Center

Donnelly, David S.

2013-01-01

This study employed a design-based research methodology to develop a theoretically sound approach for designing instructional treatments. The instruction of interest addressed the broad issue of physician wellness among medical school faculty, with particular emphasis on physician self-diagnosis and self-care. The theoretically sound approach…

Contextual Factors That Support Developmental Transitions: An International Perspective with Examples from Aboriginal/First Nations Programs.

ERIC Educational Resources Information Center

Colbert, Judith A.

This study examined the role of contextual factors in providing quality early care and education services, focusing on program models from Aboriginal/First Nation settings in four countries. Methods included a search of published literature from mainstream and Aboriginal sources, an electronic search of unique Royal Commission on Aboriginal…

Student supports: developmental education and other academic programs.

PubMed

Bettinger, Eric P; Boatman, Angela; Long, Bridget Terry

2013-01-01

Low rates of college completion are a major problem in the United States. Less than 60 percent of students at four-year colleges graduate within six years, and at some colleges, the graduation rate is less than 10 percent. Additionally, many students enter higher education ill-prepared to comprehend college-level course material. Some estimates suggest that only one-third of high school graduates finish ready for college work; the proportion is even lower among older students. Colleges have responded to the poor preparation of incoming students by placing approximately 35 to 40 percent of entering freshmen into remedial or developmental courses, along with providing academic supports such as summer bridge programs, learning communities, academic counseling, and tutoring, as well as student supports such as financial aid and child care. Eric Bettinger, Angela Boatman, and Bridget Terry Long describe the role, costs, and impact of these college remediation and academic support programs. According to a growing body of research, the effects of remedial courses are considerably nuanced. The courses appear to help or hinder students differently by state, institution, background, and academic preparedness. The mixed findings from earlier research have raised questions ranging from whether remedial programs, on average, improve student academic outcomes to which types of programs are most effective. Administrators, practitioners, and policy makers are responding by redesigning developmental courses and searching for ways to implement effective remediation programs more broadly. In addition, recent research suggests that colleges may be placing too many students into remedial courses unnecessarily, suggesting the need for further examining the placement processes used to assign students to remedial courses. The authors expand the scope of remediation research by discussing other promising areas of academic support commonly offered by colleges, including advising, tutoring, and mentoring programs, as well as supports that target the competing responsibilities of students, namely caring for dependents and balancing employment with schoolwork. They conclude that the limited resources of institutions and equally limited funds of students make it imperative for postsecondary institutions to improve student academic supports and other services.

Neonatal intensive care practices harmful to the developing brain.

PubMed

Chaudhari, Sudha

2011-06-01

There has been a marked increase in the survival of extremely low birth weight (ELBW) infants, but these babies have a long stay in the NICU. Strategies to decrease their neurodevelopmental impairment become very important. The maximum development of the brain occurs between 29-41 weeks. From the warm, dark, acquatic econiche, where the baby hears pleasant sounds like the mother's heart beat, the baby suddenly finds itself in the dry, cold, excessively bright, noisy, environment of the NICU. Noise, bright light, painful procedures, and ill-timed caregiving activities, adversely affect the infant's development. Excessive radiation from X-rays of babies on the ventilator and CT scans also affect the brain. Medications like steroids for chronic lung disease also cause damage to the brain. Aminoglycides and frusemide are known to cause hearing impairment. Hence a developmentally supportive, humanized care will go a long way in enhancing the developmental outcome of these babies.

Toddler Developmental Delays After Extensive Hospitalization: Primary Care Practitioner Guidelines.

PubMed

Lehner, Dana C; Sadler, Lois S

2015-01-01

This review investigated developmental delays toddlers may encounter after a lengthy pediatric hospitalization (30 days or greater). Physical, motor, cognitive, and psychosocial development of children aged 1 to 3 years was reviewed to raise awareness of factors associated with developmental delay after extensive hospitalization. Findings from the literature suggest that neonatal and pediatric intensive care unit (NICU/PICU) graduates are most at risk for developmental delays, but even non-critical hospital stays interrupt development to some extent. Primary care practitioners (PCPs) may be able to minimize risk for delays through the use of formal developmental screening tests and parent report surveys. References and resources are described for developmental assessment to help clinicians recognize delays and to educate families about optimal toddler development interventions. Pediatric PCPs play a leading role in coordinating health and developmental services for the young child following an extensive hospital stay.

Medicaid Managed Care Model of Primary Care and Health Care Management for Individuals with Developmental Disabilities

ERIC Educational Resources Information Center

Kastner, Theodore A.; Walsh, Kevin K.

2006-01-01

Lack of sufficient accessible community-based health care services for individuals with developmental disabilities has led to disparities in health outcomes and an overreliance on expensive models of care delivered in hospitals and other safety net or state-subsidized providers. A functioning community-based primary health care model, with an…

Teamwork in the neonatal intensive care unit.

PubMed

Barbosa, Vanessa Maziero

2013-02-01

Medical and technological advances in neonatology have prompted the initiation and expansion of developmentally supportive services for newborns and have incorporated rehabilitation professionals into the neonatal intensive care unit (NICU) multidisciplinary team. Availability of therapists specialized in the care of neonates, the roles of rehabilitation professionals, and models of service delivery vary from hospital to hospital based on philosophy, resources, and other considerations. To provide quality care for infants and families, cohesive team dynamics are required including professional competence, mutual respect, accountability, effective communication, and collaboration. This article highlights the contribution of each member of the NICU team. The dynamics of team collaboration are presented with the goal of improving outcomes of infants and families.

Trust-Based Relational Intervention (TBRI): A Systemic Approach to Complex Developmental Trauma

PubMed Central

Purvis, Karyn B.; Cross, David R.; Dansereau, Donald F.; Parris, Sheri R.

2013-01-01

Children and youth who have experienced foster care or orphanage-rearing have often experienced complex developmental trauma, demonstrating an interactive set of psychological and behavioral issues. Trust-Based Relational Intervention (TBRI) is a therapeutic model that trains caregivers to provide effective support and treatment for at-risk children. TBRI has been applied in orphanages, courts, residential treatment facilities, group homes, foster and adoptive homes, churches, and schools. It has been used effectively with children and youth of all ages and all risk levels. This article provides the research base for TBRI and examples of how it is applied. PMID:24453385

National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities.

PubMed

Havercamp, Susan M; Scott, Haleigh M

2015-04-01

People with disabilities experience worse health and poorer access to health care compared to people without disability. Large-scale health surveillance efforts have largely excluded adults with intellectual and developmental disability. This study expands knowledge of health status, health risks and preventative health care in a representative US sample comparing the health of adults with no disability to adults with intellectual and developmental disability and to adults with other types of disability. The purposes of this study were (1) to identify disparities between adults with intellectual and developmental disability and adults with no disability and (2) compare this pattern of disparities to the pattern between adults with other types of disability and adults without disability. This study compares health status, health risks and preventative health care in a national sample across three groups of adults: No Disability, Disability, and Intellectual and Developmental Disability. Data sources were the 2010 Behavior Risk Factor Surveillance Survey and the National Core Indicators Consumer Survey. Adults with disability and with intellectual and developmental disability were more likely to report being in poor health compared to adults without disability. Disability and intellectual and developmental disability conferred unique health risks and health care utilization patterns. Significant disparities in health and health care utilization were found for adults with disability and developmental disability relative to adults without disability. Disability training for health care providers and health promotion research that identifies disability as a demographic group is needed. Copyright © 2015 Elsevier Inc. All rights reserved.

A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006.

PubMed

Kogan, Michael D; Strickland, Bonnie B; Blumberg, Stephen J; Singh, Gopal K; Perrin, James M; van Dyck, Peter C

2008-12-01

We sought to examine the health care experiences of children with autism spectrum disorder and the impact of autism spectrum disorder on the family and to assess whether having a medical home is associated with less family impact. We used the 2005-2006 National Survey of Children With Special Health Care Needs to compare 2088 children with special health care needs, aged 3 to 17 years, reported by their parents to have autism spectrum disorder, with children with special health care needs with "other emotional, developmental, or behavioral problems" (excluding autism spectrum disorder; n=9534) and 26751 other children with special health care needs. We used weighted logistic regression to examine unmet needs for specific health care and support services, delayed care, no usual care source or personal physician, difficulty receiving referrals, and financial, employment, or time problems because of child's care. Nationally, an estimated 535000 children have special health care needs and autism spectrum disorder, a prevalence of 86 per 10000 children aged 3 to 17 years. Among children with special health care needs, 5.6% have autism spectrum disorder. Compared with other children with special health care needs without emotional, developmental, or behavioral problems, children with special health care needs with autism spectrum disorder were more likely to have unmet needs for specific health care services, family support services, delayed or foregone care, difficulty receiving referrals, and care that is not family centered. Children with special health care needs with autism spectrum disorder were more likely to live in families that report financial problems, need additional income for the child's medical care, reduce or stop work because of the child's condition, spend >or=10 hours per week providing or coordinating care, and paid more than $1000 in the previous year for the child's care. The financial impacts of autism spectrum disorder were significantly more burdensome when children with special health care needs did not have a medical home. Children with special health care needs with autism spectrum disorder are significantly more likely to have problems regarding access to care and unmet needs, and their families have greater financial, employment, and time burdens compared with other children with special health care needs. Receipt of primary care in a medical home may reduce these burdens.

'Maybe I will give some help…. maybe not to help the eyes but different help': an analysis of care and support of children with visual impairment in community settings in Malawi.

PubMed

Gladstone, M; McLinden, M; Douglas, G; Jolley, E; Schmidt, E; Chimoyo, J; Magombo, H; Lynch, P

2017-07-01

Visual impairment in children is common in low and middle-income settings. Whilst visual impairment (VI) can impact on the development of children, many reach full potential with appropriate early intervention programmes. Although there is increased emphasis on early child development globally, it is not yet clear how to provide specific programmes for children with VI in low and middle-income settings. This study aims to identify facilitators and barriers to the provision of a developmental stimulation programme for children with VI in rural and urban Malawi. We undertook 6 focus groups, 10 home observations and 20 in-depth interviews with carers of children with VI under 6 years in urban and rural Southern Malawi. We utilised topic guides relating to care, play, communication and feeding. Qualitative data were subject to thematic analysis that included placing themes within Bronfenbrenner's ecological framework. We established authenticity of themes through feedback from participants. We identified themes within Bronfenbrenner's framework at five levels: (1) blindness acting as a barrier to stimulation and communication, health and complex needs all affecting the individual child; (2) understanding of VI, ability to be responsive at the microsystem level of the carer; (3) support from other carers at microsystem level within a mesosystem; (4) support from other professionals (knowledge of, identification and management of children with VI, responsibilities and gender roles, environmental safety and prejudice, stigma and child protection all at the level of the exosystem. This study has revealed the requirements needed in order to produce meaningful and appropriate programmes to support nutrition, care and early stimulation for children with VI in this and similar African settings. This includes supporting carers to understand their child's developmental needs, how to better communicate with, feed and stimulate their child; offering advice sensitive to carers' responsibilities and professional training to better support carers and challenge community stigma. © 2017 The Authors. Child: Care, Health and Development Published by John Wiley & Sons Ltd.

[Raising children with mental disabilities: mothers' narratives].

PubMed

Bastos, Olga Maria; Deslandes, Suely Ferreira

2008-09-01

Technical advances in neonatology have increased the life expectancy of children with serious health problems. Many of these children experience developmental delay (mental disability) and require special care. The family must adapt to better provide for the child's needs. This study aimed to identify mothers' reactions and the obstacles they face to obtain what they consider the best treatment for their children. The study methodology was based on analysis of the mothers' narratives, drawing on medical anthropology and linguistics. The most typical plots in the narratives showed the impact of the diagnosis and the search for means to adapt to the child's care, as well as the difficulties encountered in the public health system to obtain what the mothers considered adequate care. The value ascribed to characters in the support network showed the importance of such support in these situations.

Case study: child with global developmental delay.

PubMed

Okumakpeyi, Pearline; Lunney, Margaret

2010-01-01

This case study focused on the care of a child with global developmental delay. Data were obtained through the author's clinical practice in long-term care pediatric rehabilitation and literature sources. NANDA-International Classifications, the Nursing Interventions Classification (NIC), and Nursing Outcomes Classification (NOC) were used to identify the appropriate nursing diagnosis, nursing interventions, and patient outcomes. This case study provides the pertinent nursing diagnoses, interventions, and outcomes for a child with global developmental delay. The interdisciplinary team approach and family involvement is addressed. Use of NANDA, NIC, and NOC outcomes constructs for enhancing the care of a child with global developmental delay.

Status of simulation in health care education: an international survey

PubMed Central

Qayumi, Karim; Pachev, George; Zheng, Bin; Ziv, Amitai; Koval, Valentyna; Badiei, Sadia; Cheng, Adam

2014-01-01

Simulation is rapidly penetrating the terrain of health care education and has gained growing acceptance as an educational method and patient safety tool. Despite this, the state of simulation in health care education has not yet been evaluated on a global scale. In this project, we studied the global status of simulation in health care education by determining the degree of financial support, infrastructure, manpower, information technology capabilities, engagement of groups of learners, and research and scholarly activities, as well as the barriers, strengths, opportunities for growth, and other aspects of simulation in health care education. We utilized a two-stage process, including an online survey and a site visit that included interviews and debriefings. Forty-two simulation centers worldwide participated in this study, the results of which show that despite enormous interest and enthusiasm in the health care community, use of simulation in health care education is limited to specific areas and is not a budgeted item in many institutions. Absence of a sustainable business model, as well as sufficient financial support in terms of budget, infrastructure, manpower, research, and scholarly activities, slows down the movement of simulation. Specific recommendations are made based on current findings to support simulation in the next developmental stages. PMID:25489254

Pediatric nursing practice: keeping pace with technological advances.

PubMed

Bowden, V R

2000-01-01

Over the past 25 years, extensive technological and medical advances have had a major impact on the way pediatric nursing is practiced. Pediatric nurses have expanded their nursing roles, established professional organizations and certification standards to ensure clinical competence at the bedside, and tirelessly advocated for the health care needs of children and their families. In addition, pediatric nurses have collaborated with other health care providers to institute family-centered and developmentally appropriate philosophies of care. All of these changes will assist pediatric nurses to remain focused on the most important aspect of their work: Supporting the unique needs of children and their families.

Factors Associated with Living in Developmental Centers in California

ERIC Educational Resources Information Center

Harrington, Charlene; Kang, Taewoon; Chang, Jamie

2009-01-01

This study examined need, predisposing, market, and regional factors that predicted the likelihood of individuals with developmental disabilities living in state developmental centers (DCs) compared with living at home, in community care, or in intermediate care (ICFs) and other facilities. Secondary data analysis using logistic regression models…

A Predoctoral Program in Dental Care for the Developmentally Disabled.

ERIC Educational Resources Information Center

Ferguson, Fred S.; And Others

1990-01-01

In 1980, the State University of New York at Stony Brook began a program, integrated into the program of children's dentistry, to train students in care for the developmentally disabled. Management of developmentally disabled patients is provided over three years, and represents an extension of pediatric behavior management. (MSE)

Services and supports for young children with Down syndrome: parent and provider perspectives.

PubMed

Marshall, J; Tanner, J P; Kozyr, Y A; Kirby, R S

2015-05-01

As individuals with Down syndrome are living longer and more socially connected lives, early access to supports and services for their parents will ensure an optimal start and improved outcomes. The family's journey begins at the child's diagnosis, and cumulative experiences throughout infancy and childhood set the tone for a lifetime of decisions made by the family regarding services, supports and activities. This study utilized focus groups and interviews with seven nurses, five therapists, 25 service co-ordinators, and 10 English- and three Spanish-speaking parents to better understand family experiences and perceptions on accessing Down syndrome-related perinatal, infant and childhood services and supports. Parents and providers reflected on key early life issues for children with Down syndrome and their families in five areas: prenatal diagnosis; perinatal care; medical and developmental services; care co-ordination and services; and social and community support. Systems of care are not consistently prepared to provide appropriate family-centred services to individuals with Down syndrome and their families. Individuals with disabilities require formal and informal supports from birth to achieve and maintain a high quality of life. © 2014 John Wiley & Sons Ltd.

Is there anything nontrivial about caring in nursing that is rigorously measureable?

NASA Astrophysics Data System (ADS)

Sumner, J.; Fisher, W. P., Jr.

2016-11-01

Is there anything about the well-developed body of theory around caring in nursing that leads towards improved measurement and management? Nursing is primarily practical in character; remarkably, the theory of caring in nursing remains to this day disconnected from practice in fundamental ways. Habermas' developmental theory of moral consciousness, rooted in the work of Kohlberg, supports a theory of caring in nursing as a form of communicative action. The genesis of this connection between caring in nursing and communicative action is deeply rooted in human vulnerability and the need for ‘considerateness.’ Vulnerability is always present in any human interaction and none more so than in nursing. The theory components were the personal selves of both nurse and patient, the professional self of the nurse, the illness self of the patient and interaction. It is within the latter that moral maturity emerges across preconventional, conventional and post conventional developmental levels. Metrologically, concept analysis of the theory had to be focused by the demands of scale construction on writing testable items. Pilot studies were conducted in three countries; seven subscales were theorized and identified in the data. Cronbach's Alpha was over .85 for all scales, with acceptable model fit. The subscales measure the theoretical constructs in ways utilizable in nursing practice.

Disparities in diabetes prevalence and preventable hospitalizations in people with intellectual and developmental disability: a population-based study.

PubMed

Balogh, R S; Lake, J K; Lin, E; Wilton, A; Lunsky, Y

2015-02-01

To describe and compare population-level aspects of diabetes and diabetes primary care among people with and without intellectual and developmental disabilities. Administrative health data accessed from the Institute for Clinical Evaluative Sciences was used to identify a cohort of Ontarians with and without intellectual and developmental disabilities between the ages of 30 and 69 years (n = 28 567). These people were compared with a random sample of people without intellectual and developmental disabilities (n = 2 261 919) according to diabetes prevalence, incidence, age, sex, rurality, neighbourhood income and morbidity. To measure diabetes primary care, we also studied hospitalizations for diabetes-related ambulatory care-sensitive conditions. Adults with intellectual and developmental disabilities had a consistently higher prevalence and incidence of diabetes than those without intellectual and developmental disabilities. Disparities in prevalence between those with and without intellectual and developmental disabilities were most notable among women, younger adults and those residing in rural or high income neighbourhoods. In terms of hospitalizations for diabetes-related ambulatory care-sensitive conditions, people with intellectual and developmental disabilities were 2.6 times more likely to be hospitalized. Adults with intellectual and developmental disabilities are at high risk of developing and being hospitalized for diabetes. The findings of the present study have a number of important implications related to the early detection, prevention and proper management of diabetes among adults with intellectual and developmental disabilities. © 2014 The Authors. Diabetic Medicine © 2014 Diabetes UK.

Needs among persons with human immunodeficiency virus and intellectual and developmental disabilities in community mental health care: a cross-sectional study.

PubMed

Durbin, A; Sirotich, F; Lunsky, Y; Roesslein, K; Durbin, J

2017-03-01

The experience of having human immunodeficiency virus (HIV) is often associated with co-occurring mental health issues. Community mental health services are an important source of support for persons with HIV living in the community. Persons with intellectual disability (ID) are vulnerable to HIV and may have unique support needs beyond those without ID receiving community care. This study compared support needs of men with HIV in community mental health programmes, with and without ID. The sample was composed of 138 HIV-positive men with and without ID receiving mental health case management from one community organisation in Ontario, Canada, on 31 March 2013. Staff-rated needs across 16 domains grouped into four clusters were measured using the Camberwell Assessment of Need: Basic needs (accommodation, food, public transportation, money and benefits); self-care/functional needs (looking after the home, self-care and daytime activities); health/safety needs (physical health, psychological distress, psychotic symptoms, safety to self and safety to others); and social needs (company, intimate relationships and sexual expression). Adjusted logistic regression models examined the association between ID and each need domain. One-quarter of the sample (n = 34/138, 24.6%) had co-occurring ID. Those with ID were more likely to have needs in the basic cluster [odds ratios: food 4.05 (1.14, 14.44), P:0.031; benefits 2.58 (1.05, 6.32), P:0.038)] and self-care/functional cluster [looking after the home (2.75 (1.17, 6.49), P:0.021); self-care (2.72 (1.18, 6.27), P:0.019)], but were less likely to have need for sexual expression: 0.35 (0.14,0.90), P:0.030) (social cluster). There were no differences in the domains in the health/safety cluster. Despite elevated cognitive needs in the basic and self-care/functional clusters for the ID group, limited other differences suggest that with moderate additional targeting, community mental health programmes for persons with HIV may be appropriate for men with ID. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Dyslexia in general practice education: considerations for recognition and support.

PubMed

Shrewsbury, Duncan

2016-07-01

Dyslexia is a common developmental learning difficulty, which persists throughout life. It is highly likely that those working in primary care will know, or even work with someone who has dyslexia. Dyslexia can impact on performance in postgraduate training and exams. The stereotypical characteristics of dyslexia, such as literacy difficulties, are often not obvious in adult learners. Instead, recognition requires a holistic approach to evaluating personal strengths and difficulties, in the context of a supportive relationship. Strategies to support dyslexic learners should consider recommendations made in formal diagnostic reports, and aim to address self-awareness and coping skills.

Neonatal physical therapy. Part II: Practice frameworks and evidence-based practice guidelines.

PubMed

Sweeney, Jane K; Heriza, Carolyn B; Blanchard, Yvette; Dusing, Stacey C

2010-01-01

(1) To outline frameworks for neonatal physical therapy based on 3 theoretical models, (2) to describe emerging literature supporting neonatal physical therapy practice, and (3) to identify evidence-based practice recommendations. Three models are presented as a framework for neonatal practice: (1) dynamic systems theory including synactive theory and the theory of neuronal group selection, (2) the International Classification of Functioning, Disability and Health, and (3) family-centered care. Literature is summarized to support neonatal physical therapists in the areas of examination, developmental care, intervention, and parent education. Practice recommendations are offered with levels of evidence identified. Neonatal physical therapy practice has a theoretical and evidence-based structure, and evidence is emerging for selected clinical procedures. Continued research to expand the science of neonatal physical therapy is critical to elevate the evidence and support practice recommendations.

Choice-making among Medicaid HCBS and ICF/MR recipients in six states.

PubMed

Lakin, K Charlie; Doljanac, Robert; Byun, Soo-Yong; Stancliffe, Roger; Taub, Sarah; Chiri, Giuseppina

2008-09-01

Choice in everyday decisions and in support-related decisions was addressed among 2,398 adults with intellectual and developmental disabilities receiving Medicaid Home and Community Based Services (HCBS) and Intermediate Care Facility (ICF/MR) services and living in non family settings in six states. Everyday choice in daily life and in support-related choice was considerably higher on average for HCBS than for ICF/MR recipients, but after controlling for level of intellectual disability, medical care needs, mobility, behavioral and psychiatric conditions, and self-reporting, we found that choice was more strongly associated with living in a congregate setting than whether that setting was HCBS- or ICF/MR-financed. Marked differences in choice were also evident between states.

Health Information Infrastructure for People with Intellectual and Developmental Disabilities (I/DD) Living in Supported Accommodation: Communication, Co-Ordination and Integration of Health Information.

PubMed

Dahm, Maria R; Georgiou, Andrew; Balandin, Susan; Hill, Sophie; Hemsley, Bronwyn

2017-10-25

People with intellectual and/or developmental disability (I/DD) commonly have complex health care needs, but little is known about how their health information is managed in supported accommodation, and across health services providers. This study aimed to describe the current health information infrastructure (i.e., how data and information are collected, stored, communicated, and used) for people with I/DD living in supported accommodation in Australia. It involved a scoping review and synthesis of research, policies, and health documents relevant in this setting. Iterative database and hand searches were conducted across peer-reviewed articles internationally in English and grey literature in Australia (New South Wales) up to September 2015. Data were extracted from the selected relevant literature and analyzed for content themes. Expert stakeholders were consulted to verify the authors' interpretations of the information and content categories. The included 286 sources (peer-reviewed n = 27; grey literature n = 259) reflect that the health information for people with I/DD in supported accommodation is poorly communicated, coordinated and integrated across isolated systems. 'Work-as-imagined' as outlined in policies, does not align with 'work-as-done' in reality. This gap threatens the quality of care and safety of people with I/DD in these settings. The effectiveness of the health information infrastructure and services for people with I/DD can be improved by integrating the information sources and placing people with I/DD and their supporters at the centre of the information exchange process.

Technology and the environment: supportive resource or barrier for people with developmental disabilities?

PubMed

Hammel, Joy

2003-06-01

Findings from needs assessments and abandonment studies point to issues with health care providers, particularly in their ability to listen to the needs of the consumer and important others regarding AT-EI. Professionals need to listen to what people are telling them or, in many cases, what they are not telling them. Actions and nonverbal messages can speak very loudly. Strategies to communicate and collaborate with consumers need to be developed. Regardless of ability to communicate or the severity of the impairments the person may be experiencing, it is important to withhold judgments that may underestimate a person's potential or desire to be in control of life decisions. AT-EI service have often seen people labeled with severe or profound intellectual disabilities challenge that diagnosis after accessing a communication or access system. Likewise, a person with a severe disability has the right to supportive resources and to the same level of respect, dignity, and quality of life as any other member of society. Using the technology and adapting the environment to provide opportunities for consumers to "voice" their wishes and control their lives can be an effective strategy to collaborate. When focusing on a rights-based philosophy, recognizing the difference between physical independence (e.g., physical and/or cognitive ability to do a task by oneself) and self-care management (e.g., access to and power to manage the supportive resources to live in the community regardless of level of physical ability) is important. We all rely on supports in our lives, whether it be tools or technology to help us do a job or another person, yet when we evaluate people with disabilities, the expectation is for people to function independently [23,24]. They even receive lower scores on functional assessments if they are using a piece of technology to do an activity. By shifting the focus to management of and access to resources versus level of physical dependence or burden, health care professionals can play a role in linking people to such resources as AT-EI and related services and strategies to support community living. Such a shift in focus also enables professionals to validate interdependence; that is, the give-take relationships that people have with each other to support each other [25]. The use of AT-EI by people with developmental disabilities often involves an interdependent relationship in which another person may help set up the environment or technology and, in turn, the consumer can then reciprocate and engage in an activity or a relationship [1]. Health care professionals also need to better understand and take into consideration the social context, its influence on consumers' use or nonuse of AT-EI, and the long-term influence on community living and participation decisions [1]. Nurses can involve important others in the process by listening to and considering their needs, and ensuring that they are informed about options, the benefits of using AT-EI for the consumer and themselves, and how to set up and troubleshoot the AT-EI. In cases where important others are not supportive, health care professionals may be in a position to link the consumer with other consumers and advocacy groups such as Centers for Independent Living or Self Advocates Becoming Empowered that may offer that support as well as membership in a collective community engaged in systems change. Health care professionals can serve as a system interface by linking people to information and resources to make informed decisions [26]. Resources on developmental disability and health, common issues that may occur, and life course planning help people identify functional issues and early signs of accelerated aging and proactively use the environment and technology to stay in living situations of choice. Few health care professionals are well prepared to provide services to people with developmental disabilities as they age; a great need exists for providers of such specialized services and for proactive later-life screenings that can identify issues early and make the most use of AT-EI strategies to address aging issues [26,28]. At any given point in time in the life of people with developmental disabilities, many different professionals and systems may be involved in decisions that could include AT-EI. Medical, educational, vocational, independent living, and case management systems may all be working with the person; however, there is often limited or no communication between them, particularly as the person ages or transitions between settings. Health care professionals, even when they are working with an individual on a limited basis, can and should take on active roles in linking consumers and important others with other systems and should ensure that information about their AT-EI needs is transferred accurately between systems. Most likely, nurses may be in a role to refer a person to specialized services, whether they may be medical, rehabilitative, AT-EI-specific, or disability advocacy groups that can help support the person as they face barriers or seek out AT. Nurses may also be in a role to pass on important information about the person's health and medical status that can help to better inform AT-EI decisions to ensure the AT meets the person's needs across contexts. As an interface, nurses may assume a role as a supporting advocate for accessing resources, not as a gatekeeper who makes decisions for people. This includes referring individuals with developmental disabilities to people and groups that know how to get AT-EI, how to fund it, and how to troubleshoot it, and linking them to other people with disabilities who are sharing strategies in person and on-line. It also includes focusing beyond basic self-care and considers AT-EI strategies that enable a person to participate in high meaning activities and roles in the home and the community. Participation in activities identified as highly meaningful and important to the person, such as participating in a religious community, networking with other people on-line, gardening, or being a member of a community group, to name a few, can positively contribute to health, wellness, and quality of life; the challenge is to create and adapt the environment (social, physical, and societal) to support participation choices and control.

The effect of in-hospital developmental care on neonatal morbidity, growth and development of preterm Taiwanese infants: a randomized controlled trial.

PubMed

Chen, Li-Chiou; Wu, Ying-Chin; Hsieh, Wu-Shiun; Hsu, Chyong-Hsin; Leng, Chi-Hon; Chen, Wei J; Chiu, Nan-Chang; Lee, Wang-Tso; Yang, Ming Chin; Fang, Li-Jung; Hsu, Hui-Chin; Jeng, Suh-Fang

2013-05-01

Intervention studies of developmental care for preterm infants in Western societies have shown early but unsustainable effects on child outcomes, however only a limited of studies have examined if developmental care interventions produce similar effects in Eastern cultural contexts. To examine the effectiveness of in-hospital developmental care on neonatal morbidity, growth and development of preterm infants with very low birth weight (VLBW; birth weight<1500 g) in Taiwan. One hundred and seventy-eight VLBW preterm infants were randomly assigned to the clinical trial during hospitalization at three hospitals in Taiwan; the control group received five sessions of standard child-focused developmental care and the intervention group received five sessions of child- and parent-focused developmental care. Sixty-two normal term infants were also included as a comparison group. Infants were examined for morbidity, growth and developmental outcomes at term age. At study entry, more infants in the intervention group were twins or multiples than those in the control group (29% vs. 16%, p=0.05). After adjusting for birth set, the intervention group had lower incidences of stage II-III retinopathy (odds ratio [OR]=0.34 [95% confidence interval (CI): 0.15-0.79]; p=0.01) and feeding desaturation (OR=0.32 [95% CI: 0.10-1.00]; p=0.05) and had greater daily weight gains (difference=2.0 g/day [95% CI: 0-4.0 g/day]; p=0.05) as compared with the control group. However, the intervention and control groups did not differ in any of the neurodevelopmental measures. In-hospital developmental care has short-term benefits for Taiwanese VLBW preterm infants in reducing the risk of retinopathy and feeding desaturation as well as in enhancing weight gains at term age. Copyright © 2012 Elsevier Ltd. All rights reserved.

Un/Paid Labor: Medicaid Home and Community Based Services Waivers That Pay Family as Personal Care Providers.

PubMed

Friedman, Carli; Rizzolo, Mary C

2016-08-01

The United States long-term services and supports system is built on largely unpaid (informal) labor. There are a number of benefits to allowing family caregivers to serve as paid personal care providers including better health and satisfaction outcomes, expanded workforces, and cost effectiveness. The purpose of this study was to examine how Medicaid HCBS Section 1915(c) waivers for people with intellectual and developmental disabilities allocate personal care services to pay family caregivers. Our analysis revealed about two thirds of waivers in fiscal year (FY) 2014 allowed for family caregivers to potentially be paid for personal care services. This amounted to up to $2.71 billion of projected spending, which is slightly more than half of all personal care service expenditures in FY 2014.

Agenda-setting for Canadian caregivers: using media analysis of the maternity leave benefit to inform the compassionate care benefit

PubMed Central

2014-01-01

The Compassionate Care Benefit was implemented in Canada in 2004 to support employed informal caregivers, the majority of which we know are women given the gendered nature of caregiving. In order to examine how this policy might evolve over time, we examine the evolution of a similar employment insurance program, Canada’s Maternity Leave Benefit. National media articles were reviewed (n = 2,698) and, based on explicit criteria, were analyzed using content analysis. Through the application of Kingdon’s policy agenda-setting framework, the results define key recommendations for the Compassionate Care Benefit, as informed by the developmental trajectory of the Maternity Leave Benefit. Recommendations for revising the Compassionate Care Benefit are made. PMID:24758563

Agenda-setting for Canadian caregivers: using media analysis of the maternity leave benefit to inform the compassionate care benefit.

PubMed

Dykeman, Sarah; Williams, Allison M

2014-04-24

The Compassionate Care Benefit was implemented in Canada in 2004 to support employed informal caregivers, the majority of which we know are women given the gendered nature of caregiving. In order to examine how this policy might evolve over time, we examine the evolution of a similar employment insurance program, Canada's Maternity Leave Benefit. National media articles were reviewed (n = 2,698) and, based on explicit criteria, were analyzed using content analysis. Through the application of Kingdon's policy agenda-setting framework, the results define key recommendations for the Compassionate Care Benefit, as informed by the developmental trajectory of the Maternity Leave Benefit. Recommendations for revising the Compassionate Care Benefit are made.

A systematic mapping review of effective interventions for communicating with, supporting and providing information to parents of preterm infants.

PubMed

Brett, Jo; Staniszewska, Sophie; Newburn, Mary; Jones, Nicola; Taylor, Lesley

2011-06-02

Background and objective The birth of a preterm infant can be an overwhelming experience of guilt, fear and helplessness for parents. Provision of interventions to support and engage parents in the care of their infant may improve outcomes for both the parents and the infant. The objective of this systematic review is to identify and map out effective interventions for communication with, supporting and providing information for parents of preterm infants. Design Systematic searches were conducted in the electronic databases Medline, Embase, PsychINFO, the Cochrane library, the Cumulative Index to Nursing and Allied Health Literature, Midwives Information and Resource Service, Health Management Information Consortium, and Health Management and Information Service. Hand-searching of reference lists and journals was conducted. Studies were included if they provided parent-reported outcomes of interventions relating to information, communication and/or support for parents of preterm infants prior to the birth, during care at the neonatal intensive care unit and after going home with their preterm infant. Titles and abstracts were read for relevance, and papers judged to meet inclusion criteria were included. Papers were data-extracted, their quality was assessed, and a narrative summary was conducted in line with the York Centre for Reviews and Dissemination guidelines. Studies reviewed Of the 72 papers identified, 19 papers were randomised controlled trials, 16 were cohort or quasi-experimental studies, and 37 were non-intervention studies. Results Interventions for supporting, communicating with, and providing information to parents that have had a premature infant are reported. Parents report feeling supported through individualised developmental and behavioural care programmes, through being taught behavioural assessment scales, and through breastfeeding, kangaroo-care and baby-massage programmes. Parents also felt supported through organised support groups and through provision of an environment where parents can meet and support each other. Parental stress may be reduced through individual developmental care programmes, psychotherapy, interventions that teach emotional coping skills and active problem-solving, and journal writing. Evidence reports the importance of preparing parents for the neonatal unit through the neonatal tour, and the importance of good communication throughout the infant admission phase and after discharge home. Providing individual web-based information about the infant, recording doctor-patient consultations and provision of an information binder may also improve communication with parents. The importance of thorough discharge planning throughout the infant's admission phase and the importance of home-support programmes are also reported. Conclusion The paper reports evidence of interventions that help support, communicate with and inform parents who have had a premature infant throughout the admission phase of the infant, discharge and return home. The level of evidence reported is mixed, and this should be taken into account when developing policy. A summary of interventions from the available evidence is reported.

A systematic mapping review of effective interventions for communicating with, supporting and providing information to parents of preterm infants

PubMed Central

Staniszewska, Sophie; Newburn, Mary; Jones, Nicola; Taylor, Lesley

2011-01-01

Background and objective The birth of a preterm infant can be an overwhelming experience of guilt, fear and helplessness for parents. Provision of interventions to support and engage parents in the care of their infant may improve outcomes for both the parents and the infant. The objective of this systematic review is to identify and map out effective interventions for communication with, supporting and providing information for parents of preterm infants. Design Systematic searches were conducted in the electronic databases Medline, Embase, PsychINFO, the Cochrane library, the Cumulative Index to Nursing and Allied Health Literature, Midwives Information and Resource Service, Health Management Information Consortium, and Health Management and Information Service. Hand-searching of reference lists and journals was conducted. Studies were included if they provided parent-reported outcomes of interventions relating to information, communication and/or support for parents of preterm infants prior to the birth, during care at the neonatal intensive care unit and after going home with their preterm infant. Titles and abstracts were read for relevance, and papers judged to meet inclusion criteria were included. Papers were data-extracted, their quality was assessed, and a narrative summary was conducted in line with the York Centre for Reviews and Dissemination guidelines. Studies reviewed Of the 72 papers identified, 19 papers were randomised controlled trials, 16 were cohort or quasi-experimental studies, and 37 were non-intervention studies. Results Interventions for supporting, communicating with, and providing information to parents that have had a premature infant are reported. Parents report feeling supported through individualised developmental and behavioural care programmes, through being taught behavioural assessment scales, and through breastfeeding, kangaroo-care and baby-massage programmes. Parents also felt supported through organised support groups and through provision of an environment where parents can meet and support each other. Parental stress may be reduced through individual developmental care programmes, psychotherapy, interventions that teach emotional coping skills and active problem-solving, and journal writing. Evidence reports the importance of preparing parents for the neonatal unit through the neonatal tour, and the importance of good communication throughout the infant admission phase and after discharge home. Providing individual web-based information about the infant, recording doctor–patient consultations and provision of an information binder may also improve communication with parents. The importance of thorough discharge planning throughout the infant's admission phase and the importance of home-support programmes are also reported. Conclusion The paper reports evidence of interventions that help support, communicate with and inform parents who have had a premature infant throughout the admission phase of the infant, discharge and return home. The level of evidence reported is mixed, and this should be taken into account when developing policy. A summary of interventions from the available evidence is reported. PMID:22021730

Dental Care Every Day: A Caregiver's Guide. Practical Oral Care for People with Developmental Disabilities

ERIC Educational Resources Information Center

National Institute of Dental and Craniofacial Research (NIDCR), 2009

2009-01-01

Taking care of someone with a developmental disability requires patience and skill. As a caregiver, you know this as well as anyone does. You also know how challenging it is to help that person with dental care. It takes planning, time, and the ability to manage physical, mental, and behavioral problems. Dental care isn't always easy, but you can…

Cyberbullying a modern form of bullying: let's talk about this health and social problem.

PubMed

Ferrara, Pietro; Ianniello, Francesca; Villani, Alberto; Corsello, Giovanni

2018-01-17

Cyberbullying or electronic aggression has already been designated as a serious public health threat. Cyberbullying should also be considered as a cause for new onset psychological symptoms, somatic symptoms of unclear etiology or a drop in academic performance. Pediatricians should be trained to play a major role in caring for and supporting the social and developmental well-being of children.

Preparing Tomorrow's Doctors to Care for Patients with Autism Spectrum Disorder

ERIC Educational Resources Information Center

Havercamp, Susan M.; Ratliff-Schaub, Karen; Macho, Patricia Navas; Johnson, Cherelle N.; Bush, Kelsey L.; Souders, Heather T.

2016-01-01

People with autism spectrum disorder (ASD) and other developmental disabilities have poorer health and face unique barriers to health care compared to people without disabilities. These health disparities can be partially attributed to physicians' limited knowledge about caring for patients with developmental disabilities. The purpose of this…

Access to Health Care for Individuals with Developmental Disabilities from Minority Backgrounds

ERIC Educational Resources Information Center

Reichard, Amanda; Sacco,Therese Marie; Turnbull, H. Rutherford, III

2004-01-01

In this project we examined access to health care by individuals with developmental disabilities in Kansas from low income populations and from minority backgrounds. Four criteria for determining access were employed: availability, accessibility, affordability, and appropriateness of care. Factors that pose barriers and that facilitate access are…

Comparison of job burnout and life satisfaction between native and foreign female direct care workers in disability institutions.

PubMed

Lin, Lan-Ping; Wu, Tzu-Ying; Lin, Jin-Ding

2015-01-01

There is little information about the burnout and wellbeing of institutional caregivers working for people with intellectual and developmental disabilities; information is particularly limited in the understanding of experiences of direct care workers. The aims of the study were to provide a profile of self-perceived burnout and wellbeing of direct-care caregivers working in disability institutions, and to compare the difference between native- and foreign caregivers. A cross-sectional survey was conducted. We recruited 46 female living assistants of people with intellectual and developmental disabilities in two disability institutions in Taiwan. There were 23 subjects who were local residents and 23 subjects who were foreign providers of labor. A self-administered questionnaire which included scale of the Copenhagen Burnout Inventory (CBI), the Subjective Happiness Scale (SHS), and the Satisfaction with Life Scale (SWLS) were employed in the survey. Findings revealed the local caregivers were slightly higher than foreign caregivers in personal burnout score (PBS) and work-related burnout score (WBS), although there were no significant differences. Those caregivers from foreign countries seem to be slightly happier and have higher life satisfaction than native caregivers. In order to decrease the burnout and improve wellbeing of caregivers of people with intellectual and developmental disabilities, service providers should understand the experiences which caregivers encounter in their workplaces. Caregivers can benefit if they receive appropriate support to improve positive health while working for their service clients.

Exploring the Impact of a Dual Occupancy Neonatal Intensive Care Unit on Staff Workflow, Activity, and Their Perceptions.

PubMed

Broom, Margaret; Kecskes, Zsuzsoka; Kildea, Sue; Gardner, Anne

2018-01-01

In 2012, a tertiary neonatal intensive care unit (NICU) transitioned from an open plan (OP) to a dual occupancy (DO) NICU. The DO design aimed to provide a developmental appropriate, family-centered environment for neonates and their families. During planning, staff questioned the impact DO would have on staff workflow and activity. To explore the impact of changing from an OP to a DO NICU, a prospective longitudinal study was undertaken from 2011 to 2014, using observational, time and motion, and surveys methods. Main outcome measures included distance walked by staff, minutes of staff activity, and staff perceptions of the DO design. Results highlighted no significant difference in the distances clinical nurses walked nor time spent providing direct clinical care, whereas technical support staff walked further than other staff in both designs. Staff perceived the DO design created a developmentally appropriate, family-centered environment that facilitated communication and collaboration between staff and families. Staff described the main challenges of the DO design such as effective staff communication, gaining educational opportunities, and the isolation of staff and families compared to the OP design. Our study provides new evidence that DO provides an improved developmentally environment and has similar positive benefits to single-family room for neonates and families. Such design may reduce the larger floor plan's impact on staff walking distance and work practices. Challenges of staff transition can be minimized by planning and leadership throughout the development and move to a new design.

Developmental Screening in Community Health Care Centers and Pediatric Practices: An Evaluation of the Baby Steps Program

ERIC Educational Resources Information Center

Shannon, Patrick; Anderson, Patti Rawding

2008-01-01

The Baby Steps Program (Easter Seals of New Hampshire, 2003) is a child-find program that introduces developmental specialists into health care settings to conduct developmental screenings with children during well-child visits. This article presents the Baby Steps Program model, summaries of screening and referral data, and the results of 3 focus…

Child Care Providers' Competence and Confidence in Referring Children at Risk for Developmental Delays

ERIC Educational Resources Information Center

Branson, Diane; Bingham, Ann

2017-01-01

Despite the benefits of early intervention for children, the majority of children with developmental delays are not identified prior to the age of 5 years. Child care providers could aid in recognition of children at risk for developmental delays; however, there is little research on this topic. This article reports on a qualitative research study…

Need For Long-Term Care in Children is Increasingly Caused by Disorders of Psychological Development. Changes in the Care Causing Diagnoses According to German Social Code (SGB XI) Between 2009-2014.

PubMed

Beck-Ripp, Julia Christiane; Dressel, Holger

2018-05-22

There is an ongoing discussion on the increasing number of children with mental and developmental disorders, with some even needing long-term care according to the German Social Code XI. This study was performed to identify the main diagnoses justifying such care in children and to analyse their prevalence over time. The diagnoses justifying long-term care were evaluated using care assessments of Bavarian children and adolescents between 2009 to 2014 by the medical service of statutory health insurance. Over the years investigated, the percentage of assessments due to a mental and behavioural disorder rose significantly from 36.2 to 42.2%. Since 2012, the most common diagnose changed from Down's syndrome to pervasive developmental disorders with marked increase of also mixed specific developmental disorders. In new applications for nursing insurance services the proportion of pervasive developmental disorders rose gradually from 151 in 2010 to 254 in 2014. During the whole period of time, the overall care dependency in children seemed to be stable. These observations might rather be influenced by altered awareness of health and illness, increasing readiness to seek help with psychological or developmental impairments as well as changed diagnostic criteria than by a steady increase in affected individuals. © Georg Thieme Verlag KG Stuttgart · New York.

Desirable Components for a Customized, Home-Based, Digital Care-Management App for Children and Young People With Long-Term, Chronic Conditions: A Qualitative Exploration

PubMed Central

Hall, Andrew; Gelder, Carole; Friedl, Simone; Brennan, Eileen; Swallow, Veronica

2017-01-01

Background Mobile apps for mobile phones and tablet devices are widely used by children and young people aged 0-18 years with long-term health conditions, such as chronic kidney disease (CKD), and their healthy peers for social networking or gaming. They are also poised to become a major source of health guidance. However, app development processes that are coproduced, rigorously developed, and evaluated to provide tailored, condition-specific, practical advice on day-to-day care management are seldom systematic or sufficiently described to enable replication. Furthermore, attempts to extrapolate to the real world are hampered by a poor understanding of the effects of key elements of app components. Therefore, effective and cost-effective novel, digital apps that will effectively and safely support care management are critical and timely. To inform development of such an app for children with CKD, a user requirements-gathering exercise was first needed. Objective To explore the views of children with CKD, their parents, and health care professionals to inform future development of a child-focused, care-management app. Methods Using age- and developmentally appropriate methods, we interviewed 36 participants: 5-10-year-olds (n=6), 11-14-year-olds (n=6), 15-18-year-olds (n=5), mothers (n=10), fathers (n=2), and health care professionals (n=7). Data were analyzed using Framework Analysis and behavior change theories. Results Of the 27 interviews, 19 (70%) interviews were individual and 8 (30%) were joint—5 out of 8 (63%) joint interviews were with a child or young person and their parent, 1 out of 8 (13%) were with a child and both parents, and 2 out of 8 (25%) were with 2 professionals. Three key themes emerged to inform development of a software requirement specification for a future home-based, digital care-management app intervention: (1) Gaps in current online information and support, (2) Difficulties experienced by children with a long-term condition, and (3) Suggestions for a digital care-management app. Reported gaps included the fact that current online information is not usually appropriate for children as it is “dry” and “boring,” could be “scary,” and was either hard to understand or not relevant to individuals’ circumstances. For children, searching online was much less accessible than using a professional-endorsed mobile app. Children also reported difficulty explaining their condition to others, maintaining treatment adherence, coping with feeling isolated, and with trying to live a “normal” life. There was recognition that a developmentally appropriate, CKD-specific app could support the process of explaining the condition to healthy peers, reducing isolation, adhering to care-management plans, and living a “normal” life. Participants recommended a range of media and content to include in a tailored, interactive, age- and developmentally appropriate app. For example, the user would be able to enter their age and diagnosis so that only age-appropriate and condition-specific content is displayed. Conclusions Future development of a digital app that meets the identified information and support needs and preferences of children with CKD will maximize its utility, thereby augmenting CKD caregiving and optimizing outcomes. PMID:28676470

Desirable Components for a Customized, Home-Based, Digital Care-Management App for Children and Young People With Long-Term, Chronic Conditions: A Qualitative Exploration.

PubMed

Nightingale, Ruth; Hall, Andrew; Gelder, Carole; Friedl, Simone; Brennan, Eileen; Swallow, Veronica

2017-07-04

Mobile apps for mobile phones and tablet devices are widely used by children and young people aged 0-18 years with long-term health conditions, such as chronic kidney disease (CKD), and their healthy peers for social networking or gaming. They are also poised to become a major source of health guidance. However, app development processes that are coproduced, rigorously developed, and evaluated to provide tailored, condition-specific, practical advice on day-to-day care management are seldom systematic or sufficiently described to enable replication. Furthermore, attempts to extrapolate to the real world are hampered by a poor understanding of the effects of key elements of app components. Therefore, effective and cost-effective novel, digital apps that will effectively and safely support care management are critical and timely. To inform development of such an app for children with CKD, a user requirements-gathering exercise was first needed. To explore the views of children with CKD, their parents, and health care professionals to inform future development of a child-focused, care-management app. Using age- and developmentally appropriate methods, we interviewed 36 participants: 5-10-year-olds (n=6), 11-14-year-olds (n=6), 15-18-year-olds (n=5), mothers (n=10), fathers (n=2), and health care professionals (n=7). Data were analyzed using Framework Analysis and behavior change theories. Of the 27 interviews, 19 (70%) interviews were individual and 8 (30%) were joint-5 out of 8 (63%) joint interviews were with a child or young person and their parent, 1 out of 8 (13%) were with a child and both parents, and 2 out of 8 (25%) were with 2 professionals. Three key themes emerged to inform development of a software requirement specification for a future home-based, digital care-management app intervention: (1) Gaps in current online information and support, (2) Difficulties experienced by children with a long-term condition, and (3) Suggestions for a digital care-management app. Reported gaps included the fact that current online information is not usually appropriate for children as it is "dry" and "boring," could be "scary," and was either hard to understand or not relevant to individuals' circumstances. For children, searching online was much less accessible than using a professional-endorsed mobile app. Children also reported difficulty explaining their condition to others, maintaining treatment adherence, coping with feeling isolated, and with trying to live a "normal" life. There was recognition that a developmentally appropriate, CKD-specific app could support the process of explaining the condition to healthy peers, reducing isolation, adhering to care-management plans, and living a "normal" life. Participants recommended a range of media and content to include in a tailored, interactive, age- and developmentally appropriate app. For example, the user would be able to enter their age and diagnosis so that only age-appropriate and condition-specific content is displayed. Future development of a digital app that meets the identified information and support needs and preferences of children with CKD will maximize its utility, thereby augmenting CKD caregiving and optimizing outcomes. ©Ruth Nightingale, Andrew Hall, Carole Gelder, Simone Friedl, Eileen Brennan, Veronica Swallow. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 04.07.2017.

Well-Child Care Practice Redesign for Low-Income Children: The Perspectives of Health Plans, Medical Groups, and State Agencies

PubMed Central

Coker, Tumaini R.; DuPlessis, Helen M.; Davoudpour, Ramona; Moreno, Candice; Rodriguez, Michael A.; Chung, Paul J.

2015-01-01

Objective The aim of this study was to examine the views of key stakeholders in health care payer organizations on the use of practice redesign strategies to improve the delivery of well-child care (WCC) to low-income children aged 0 to 3 years. Methods We conducted semistructured interviews with 18 key stakeholders (eg, chief medical officers, medical directors) in 11 California health plans and 2 medical group organizations serving low-income children, as well as the 2 state agencies that administer the 2 largest low-income insurance programs for California children. Discussions were recorded, transcribed, and analyzed using the constant comparative method of qualitative analysis. Results Participants reported that nonphysicians were underutilized as WCC providers, and group visits and Internet services were likely a more effective way to provide anticipatory guidance and behavioral/developmental services. Participants described barriers to redesign, including the start-up costs required to implement redesign as well as a lack of financial incentives to support innovation in WCC delivery. Participants suggested solutions to these barriers, including using pay-for-performance programs to reward practices that expanded WCC services, and providing practices with start-up grants to implement pilot redesign projects that would eventually become self-sustaining. State-level barriers included poor Medicaid reimbursement rates and disincentives to innovation created by current Healthcare Effectiveness Data and Information Set measures. Conclusions All stakeholders will ultimately be needed to support WCC redesign; however, California payers may need to provide logistic, design, and financial support to practices, whereas state agencies may need to reshape the incentives to reward innovation around child preventive health and developmental services. PMID:22075467

Approaching the adolescent-headed family: a review of teen parenting.

PubMed

Savio Beers, Lee A; Hollo, Ruth E

2009-10-01

In the USA, as many as 1 in 6 women nationwide become adolescent mothers, making adolescent pregnancy and childbearing issues a frequently encountered occurrence by pediatricians and adolescent medicine health care providers. Both social and medical programs focus on prevention and management of adolescent pregnancies; however, caring for the adolescent-headed family is less well understood. For many teen parents, various environmental and behavioral risks contributed to early childbearing and parenting. Following delivery of the infant, many of these same psycho-social, environmental, and educational factors continue to play a role in the teen's ability to parent effectively. This review explores these factors in relation to teen parenting as well as describes the limited data available on outcomes of adolescent mothers and their infants. Despite negative social stereotypes regarding adolescent fathers, research suggesting that most fathers desire involvement with their infants and the impact of and factors influencing father involvement is explored. Understanding the dynamics of the coparenting relationship, an expanding field of study, will aid practitioners in strengthening and supporting teen parenting by both mothers and fathers. As most teen parents continue to reside with their families, teen parenting has an important impact on the multi-generational family structure. These relationships can serve both to support and at times to hinder the adolescent parents' development as an individual and as a parent. Successful interventions and programs to support the adolescent-headed family take on various forms but are usually comprehensive and multidisciplinary and consider the developmental status of both the parent and the child. To best care for adolescent-headed families, pediatricians and adolescent medicine providers should understand the psychosocial, developmental, educational, and relationship issues that influence adolescent parenting.

Developmental care does not alter sleep and development of premature infants.

PubMed

Ariagno, R L; Thoman, E B; Boeddiker, M A; Kugener, B; Constantinou, J C; Mirmiran, M; Baldwin, R B

1997-12-01

The Neonatal Individualized Developmental Care Program (NIDCAP) for very low birth weight (VLBW) preterm infants has been suggested by Als et al to improve several medical outcome variables such as time on ventilator, time to nipple feed, the duration of hospital stay, better behavioral performance on Assessment of Preterm Infants' Behavior (APIB), and improved neurodevelopmental outcomes. We have tested the hypothesis of whether the infants who had received NIDCAP would show advanced sleep-wake pattern, behavioral, and neurodevelopmental outcome. Thirty-five VLBW infants were randomly assigned to receive NIDCAP or routine infant care. The goals for NIDCAP intervention were to enhance comfort and stability and to reduce stress and agitation for the preterm infants by: a) altering the environment by decreasing excess light and noise in the neonatal intensive care unit (NICU) and by using covers over the incubators and cribs; b) use of positioning aids such as boundary supports, nests, and buntings to promote a balance of flexion and extension postures; c) modification of direct hands-on caregiving to maximize preparation of infants for, tolerance of, and facilitation of recovery from interventions; d) promotion of self-regulatory behaviors such as holding on, grasping, and sucking; e) attention to the readiness for and the ability to take oral feedings; and f) involving parents in the care of their infants as much as possible. The infants' sleep was recorded at 36 weeks postconceptional age (PCA) and at 3 months corrected age (CA) using the Motility Monitoring System (MMS), an automated, nonintrusive procedure for determining sleep state from movement and respiration patterns. Behavioral and developmental outcome was assessed by the Neurobehavioral Assessment of the Preterm Infant (NAPI) at 36 weeks PCA, the APIB at 42 weeks PCA, and by the Bayley Scales of Infant Development (BSID) at 4, 12, and 24 months CA. Sleep developmental measures at 3 months CA showed a clear developmental change compared with 36 weeks PCA. These include: increased amount of quiet sleep, reduced active sleep and indeterminate sleep, decreased arousal, and transitions during sleep. Longest sleep period at night showed a clear developmental effect (increased) when comparing nighttime sleep pattern of infants at 3 months with those at 36 weeks of age. Day-night rhythm of sleep-wake increased significantly from 36 weeks PCA to 3 months CA. However, neither of these sleep developmental changes showed any significant effects of NIDCAP intervention. Although all APIB measures showed better organized behavior in NIDCAP patients, neither NAPI nor Bayley showed any developmental advantages for the intervention group. The neurodevelopmental outcome measured by the Bayley at 4, 12, and 24 months CA showed 64% of the NIDCAP intervention group at the lowest possible score compared with 33% of the control group. These findings could not be explained by the occurrence of intraventricular hemorrhage or the socioeconomic status of the parents, which showed no significant group effect. The results of this study, including measures of sleep maturation and neurodevelopmental outcome up to 2 years of age did not demonstrate that the NIDCAP intervention results in increased maturity or development. Buehler et al (Pediatrics. 1995;96:923-932) have reported that premature infants (N = 12; mean gestational age 32 weeks, mean birth weight 1700 g) who received developmental care compared with a similar group of infants who received routine care showed better organized behavioral performance on an APIB assessment at 42 weeks PCA. None of the medical outcome measures were significantly different in this study. Although our APIB results are in agreement, the results of the NAPI, the Bayley and sleep measures do not show an increase in neurodevelopmental maturation. In the earlier report by Als et al (Journal of the American Medical Associatio

Perspectives of Physicians, Families, and Case Managers Concerning Access to Health Care by Individuals with Developmental Disabilities

ERIC Educational Resources Information Center

Reichard, Amanda; Turnbull, H. Rutherford, III

2004-01-01

This study of the status of medical care for Kansans with developmental disabilities consists of reports from physicians, service providers, and family members. Overall, these three groups indicated satisfaction with medical care across the four criteria of availability, accessibility, appropriateness, and affordability. The bases for these…

Technical Elements, Demonstration Projects, and Fiscal Models in Medicaid Managed Care for People with Developmental Disabilities.

ERIC Educational Resources Information Center

Kastner, Theodore A.; Walsh, Kevin K.; Criscione, Teri

1997-01-01

Presents a general model of the structure and functioning of managed care and describes elements (provider networks, fiscal elements, risk estimation, case-mix, management information systems, practice parameters, and quality improvement) critical to people with developmental disabilities. Managed care demonstration projects and a hypothetical…

Developmental Characteristics of Young Dual Language Learners: Implications for Policy and Practice in Infant and Toddler Care

ERIC Educational Resources Information Center

Castro, Dina C.; Espinosa, Linda M.

2014-01-01

This article discusses the current knowledge on the developmental characteristics and contexts of care for infants and toddlers who are growing up in bilingual environments at home and in their early care settings in the united States. The authors highlight relevant findings from the work of the Center of Early Care and Education Research-Dual…

A qualitative exploration of resilience in pre-adolescent AIDS orphans living in a residential care facility.

PubMed

Pienaar, Anja; Swanepoel, Zendré; van Rensburg, Hendrik; Heunis, Christo

2011-01-01

This article presents the findings of a study among a small group of South African AIDS orphans living in a residential care facility, Lebone Land. The research was conducted between June and September 2006. A qualitative, exploratory study consisting of in-depth, semistructured interviews with eight children and seven key informants aimed to identify and investigate developmental assets operating in the children's lives to help them cope amid exposure to adversities. The findings indicate that the developmental assets that facilitate coping and foster resilience in these children relate to four main components: external stressors and challenges, external supports, inner strengths and interpersonal and problem-solving skills. Emerging key themes relate to the experience of illness, death, poverty and violence, as well as the important roles of morality, social values, resistance skills, religion and faith in assisting these children in defining their purpose in life. To this end, constructive use of time, commitment to learning, goal-setting, problem-solving ability and self-efficacy are fundamental in the children's attainment of their future projections. Therefore, qualities such as optimism, perseverance and hope seem to permeate the children's process of recovery. Strong networks of support, particularly friendships with other children, also seem to contribute to developing and sustaining resilience.

‘Maybe I will give some help…. maybe not to help the eyes but different help’: an analysis of care and support of children with visual impairment in community settings in Malawi

PubMed Central

McLinden, M.; Douglas, G.; Jolley, E.; Schmidt, E.; Chimoyo, J.; Magombo, H.; Lynch, P.

2017-01-01

Abstract Background Visual impairment in children is common in low and middle‐income settings. Whilst visual impairment (VI) can impact on the development of children, many reach full potential with appropriate early intervention programmes. Although there is increased emphasis on early child development globally, it is not yet clear how to provide specific programmes for children with VI in low and middle‐income settings. This study aims to identify facilitators and barriers to the provision of a developmental stimulation programme for children with VI in rural and urban Malawi. Methods We undertook 6 focus groups, 10 home observations and 20 in‐depth interviews with carers of children with VI under 6 years in urban and rural Southern Malawi. We utilised topic guides relating to care, play, communication and feeding. Qualitative data were subject to thematic analysis that included placing themes within Bronfenbrenner's ecological framework. We established authenticity of themes through feedback from participants. Results We identified themes within Bronfenbrenner's framework at five levels: (1) blindness acting as a barrier to stimulation and communication, health and complex needs all affecting the individual child; (2) understanding of VI, ability to be responsive at the microsystem level of the carer; (3) support from other carers at microsystem level within a mesosystem; (4) support from other professionals (knowledge of, identification and management of children with VI, responsibilities and gender roles, environmental safety and prejudice, stigma and child protection all at the level of the exosystem. Discussion This study has revealed the requirements needed in order to produce meaningful and appropriate programmes to support nutrition, care and early stimulation for children with VI in this and similar African settings. This includes supporting carers to understand their child's developmental needs, how to better communicate with, feed and stimulate their child; offering advice sensitive to carers' responsibilities and professional training to better support carers and challenge community stigma. PMID:28393382

Effectiveness of a Caregiver Education Program on Providing Oral Care to Individuals with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Fickert, Nancy A.; Ross, Diana

2012-01-01

Caregivers who work in community living arrangements or intermediate care facilities are responsible for the oral hygiene of individuals with intellectual and developmental disabilities. Oral hygiene training programs do not exist in many organizations, despite concerns about the oral care of this population. The purpose of this study was to…

Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: a cross-sectional facility-based survey.

PubMed

Tilahun, Dejene; Hanlon, Charlotte; Fekadu, Abebaw; Tekola, Bethlehem; Baheretibeb, Yonas; Hoekstra, Rosa A

2016-04-27

Understanding the perspectives of caregivers of children with developmental disorders living in low-income countries is important to inform intervention programmes. The purpose of this study was to examine the stigma experiences, explanatory models, unmet needs, preferred interventions and coping mechanisms of caregivers of children with developmental disorders in Ethiopia. Participants comprised caregivers (n = 102) of children with developmental disorders attending two child mental health clinics in Addis Ababa. The majority (66.7%; n = 68) had a diagnosis of intellectual disability (ID); 34 children (33.3%) had autism spectrum disorder (ASD) as their primary diagnosis. All caregivers were administered a structured questionnaire via a face-to-face interview, which included an adaptation of the Family Interview Schedule, closed questions about socio-demographic characteristics, explanatory models of illness, type of interventions used or desired and coping strategies, and an open ended question regarding the family's unmet needs. Most caregivers reported experience of stigma: 43.1% worried about being treated differently, 45.1% felt ashamed about their child's condition and 26.7% made an effort to keep their child's condition secret. Stigma did not depend on the type of developmental disorder, the child's age or gender, or on the age or level of education of the caregiver (all p > 0.05). Reported stigma was significantly higher in caregivers who had sought traditional help (p < 0.01), provided supernatural explanations for their child's condition (p = .02) and in caregivers of Orthodox Christian faith (p = .03). Caregivers gave a mixture of biomedical explanations (e.g. head injury (30.4%) or birth complications (25.5%)) and supernatural explanations (e.g. spirit possession (40.2%) or sinful act (27.5%)) for their child's condition. The biggest reported unmet need was educational provision for their child (74.5%), followed by treatment by a health professional (47.1%), financial support (30.4%) and expert help to support their child's development (27.5%). Most caregivers reported that talking to health professionals (86.3%) and family (85.3%) helped them to cope. Many caregivers also used support from friends (76.5%) and prayer (57.8%) as coping mechanisms. This study highlights the stigma experienced by families caring for a child with a developmental disorder. Designing interventions appropriate for low-income settings that improve awareness about developmental disorders, decrease stigma, improve access to appropriate education and strengthen caregivers' support are needed.

[Home care for the high-risk newborn infant].

PubMed

Puddu, M

2010-06-01

With increased survival of extremely low birth weigh (ELBW) and very ill infants, a lot of them are discharged with unresolved medical issues that complicate their subsequent care. Infants born preterm with low birth weight who require neonatal intensive care experience a much higher rate of hospital readmission and death during the first year after birth compared with healthy term infants. Despite initial hospital care which is one of the most expensive of all kind of hospitalization, home care services are sometimes still sparse though the high risk of this group for failure to thrive, respiratory problems, developmental delays, parenting problems. In addition, societal and economic forces have come to bear on the timing and process of discharge and home care. Moreover it takes time for the family of a high-risk infant to prepare to care for their infant in a home setting and to obtain the necessary support services and mobilize community resources. Careful preparation for discharge, good follow-up and medical home after discharge may reduce these risks.

Caregiver Training in Mindfulness-Based Positive Behavior Supports (MBPBS): Effects on Caregivers and Adults with Intellectual and Developmental Disabilities

PubMed Central

Singh, Nirbhay N.; Lancioni, Giulio E.; Karazsia, Bryan T.; Myers, Rachel E.

2016-01-01

Caregivers often manage the aggressive behavior of individuals with intellectual and developmental disabilities that reside in community group homes. Sometimes this results in adverse outcomes for both the caregivers and the care recipients. We provided a 7-day intensive Mindfulness-Based Positive Behavior Support (MBPBS) training to caregivers from community group homes and assessed the outcomes in terms of caregiver variables, individuals’ behaviors, and an administrative outcome. When compared to pre-MBPBS training, the MBPBS training resulted in the caregivers using significantly less physical restraints, and staff stress and staff turnover were considerably reduced. The frequency of injury to caregivers and peers caused by the individuals was significantly reduced. A benefit-cost analysis showed substantial financial savings due to staff participation in the MBPBS program. This study provides further proof-of-concept for the effectiveness of MBPBS training for caregivers, and strengthens the call for training staff in mindfulness meditation. PMID:26903906

Developmental disabilities: improving competence in care using virtual patients.

PubMed

Sanders, Carla L; Kleinert, Harold L; Free, Teresa; King, Pam; Slusher, Ida; Boyd, Sara

2008-02-01

Nurse practitioners (NPs) have an increasingly important role in health care provision in the United States. However, most nurses report that they receive little or no clinical training in the area of developmental disabilities. A core development team consisting of NP faculty members from three universities, one physician assistant faculty member, the parents of children with developmental disabilities, and educational specialists developed two multimedia interactive pediatric instructional modules in CD-ROM format: one involving a child with Down syndrome and the other, an infant born at 26 weeks gestation. Participants were required to make decisions about proper clinical interaction throughout the cases. The modules on CD were piloted with NP students at three universities. Effectiveness study results demonstrated significant gains in both knowledge and comfort level regarding the care of patients with developmental disabilities.

Graduation Day: Healthcare Transition From Pediatric to Adult.

PubMed

Green Corkins, Kelly; Miller, Michelle A; Whitworth, John R; McGinnis, Carol

2018-02-01

Because more patients with pediatric-onset chronic conditions are surviving into adulthood, they are graduating from pediatric healthcare to self-management and adult healthcare. This transfer of care needs to be a process of transitioning medical and nutrition care. Despite having position statements from professional organizations and several proposed models, issues in the transition process have been well described, and gaps in transition care persist. Healthcare providers need to be aware of special needs of emerging adults related to education on chronic condition and self-management skills, emotional support before and after transition, and legal rights for both the patient and the parent if the emerging adult is not developmentally appropriate to make his or her own healthcare decisions. Both pediatric and adult providers need to be in active communication with each other and the patient to develop trusting relationships and actively support the transition of care. This review of literature describes several models for transitioning, measureable outcomes, insurance provider issues, and legal issues pertaining to healthcare transition. © 2018 American Society for Parenteral and Enteral Nutrition.

Building a Bridge from Birth to School: Improving Developmental and Behavioral Health Services for Young Children.

ERIC Educational Resources Information Center

Halfon, Neal; Regalado, Michael; McLearn, Kathryn Taaffe; Kuo, Alice A.; Wright, Kynna

Although most American infants and young children receive adequate well-child care, they may not receive needed help if developmental problems arise. This report examines primary health care services that promote infant/child development and suggests ways to improve those services as part of routine primary child health care. The report details…

Quality Health Care for People with Developmental Disabilities: A Guide for Parents and Other Caregivers.

ERIC Educational Resources Information Center

Pfaffinger, Kathleen M.; Nelson, Richard P.

Starting with the premise that all people have a right to quality health care, this guide emphasizes that assisting people with developmental disabilities to obtain health care and maintain healthy life styles will enhance the quality of their lives at home and in the community. The guide consists of four sections. A section on obtaining care…

Children with chronic continence problems: the challenges for families.

PubMed

Erickson, David V; Ray, Lynne D

2004-01-01

For families who are raising children with myelomeningocele, bowel and bladder incontinence presents unique challenges for everyday life. The Parenting and Childhood Chronicity model is used to describe the work of raising a child with a chronic condition in 6 areas, including medical care, adapted parenting, dealing with the systems, caring for siblings, maintaining relationships, and personal coping (keeping yourself going). This article provides an overview of the physiologic and developmental challenges inherent in this neural tube defect and illustrates the work that is involved in the child's care and the challenges of maintaining a balance in family life. Clinical implications are discussed, including the setting of appropriate expectations, providing parents with accurate information, ensuring that a focus on continence is not at the expense of other important aspects of the child's functioning, and supporting parents in their interaction with the school system. The medical team, consisting of nursing, urology, nephrology, and psychology working together, can be a strong support for families.

Meeting the mental health needs of children and youth through integrated care: A systems and policy perspective.

PubMed

de Voursney, David; Huang, Larke N

2016-02-01

The health home program established under the Affordable Care Act (2010) is derived from the medical home concept originated by the American Academy of Pediatrics in 1968 to provide a care delivery model for children with special health care needs. As applied to behavioral health, health homes or medical homes have become increasingly adult-focused models, with a primary goal of coordinating physical and behavioral health care. For children and youth with serious emotional disorders, health homes must go beyond physical and behavioral health care to connect with other child-focused sectors, such as education, child welfare, and juvenile justice. Each of these systems have a significant role in helping children meet health and developmental goals, and should be included in integrated approaches to care for children and youth. Health homes for young people should incorporate a continuum of care from health promotion to the prevention and treatment of disorders. The challenge for child- and youth-focused health homes is to integrate effective services and supports into the settings where young people naturally exist, drawing on the best evidence from mental health, physical medicine, and other fields. What may be needed is not a health home as currently conceptualized for adults, nor a traditional medical home, but a family- and child-centered coordinated care and support delivery system supported by health homes or other arrangements. This article sets out a health home framework for children and youth with serious mental health conditions and their families, examining infrastructure and service delivery issues. (c) 2016 APA, all rights reserved).

Rethinking evidence-based practice and two-generation programs to create the future of early childhood policy

PubMed Central

Shonkoff, Jack P.; Fisher, Philip A.

2016-01-01

Half a century of research and program evaluation has fueled a diverse landscape of early childhood policies and practices that produce a range of positive effects on the life prospects of children who face the burdens of significant adversity. Drawing on advances in neurobiology, developmental psychology, developmental psychopathology, and prevention science, this paper presents a framework for elucidating underlying causal mechanisms that explain differences in outcomes, formulating enhanced theories of change about how to shift developmental trajectories, designing creative interventions and rethinking the concept of a two-generation strategy to produce breakthrough impacts, and launching a new era of investment in young children and their families that will achieve greater reductions in intergenerational disparities in learning, behavior, and health than those produced by current best practices. Particular attention is focused on the hypothesis that substantially better outcomes for vulnerable, young children could be achieved by greater attention to strengthening the resources and capabilities of the adults who care for them rather than by continuing to focus primarily on the provision of child-focused enrichment, parenting education, and informal support. Central to achieving this goal is the need to establish an innovation-friendly environment that embraces fast-cycle sharing, supports risk taking, and celebrates learning from failure. PMID:24342860

Medicaid Managed Care and Individuals with Disabilities: Status Report.

ERIC Educational Resources Information Center

Hemp, Richard; Braddock, David

1998-01-01

Summarizes information presented in the American Association on Mental Retardation's 1998 publication, "State of the States in Developmental Disabilities" (Braddock, Hemp, Parish, and Westrich), which reports data on the implementation of managed care for persons with developmental disabilities. A table summarizes information about…

Access to dental care for persons with developmental disabilities in Ontario.

PubMed

Koneru, Anjani; Sigal, Michael J

2009-03-01

This study was undertaken to determine the proportion of persons primarily with developmental disabilities who encounter difficulties accessing dental care in Ontario, to identify perceived barriers to accessing dental care and to determine if persons with disabilities and their caregivers believe that oral health is important. Community organizations providing services mainly to persons with developmental disabilities in Ontario were recruited to circulate a questionnaire to their members by mail or the Internet. Fourteen organizations mailed out a total of 1,755 paper questionnaires in autumn 2006, of which 420 (23.9%) were returned; in addition, 236 Internet questionnaires were returned. Of the 656 paper and Internet responses, 634 were deemed valid. Most of the respondents had developmental disabilities. Almost three-quarters of respondents (464 [73.2%] ) reported being able to access dental services in Ontario. Personal (internal) factors were more likely to represent barriers to dental care than external factors. The majority of persons with disabilities and most caregivers believed that oral health is important for overall health.

Education on the Brain: A Partnership Between a Pediatric Primary Care Center and Neurology Residency.

PubMed

Zwemer, Eric; Bernson-Leung, Miya; Rea, Corinna; Patel, Archana A; Guerriero, Rejean; Urion, David K; Toomey, Sara L

2018-01-01

The national shortage of pediatric neurologists is worsening, yet referral rates by pediatricians are high. Suboptimal training of pediatric residents in care of patients with neurologic disease may be a contributing factor. We formed a partnership between the Boston Children's Primary Care at Longwood clinic and Child Neurology Residency Training Program. The educational intervention included lectures, observed neurologic examinations, in-person and virtual triage, and an electronic medical record-based consult system. Residents in other primary care clinics served as the comparison group. Intervention-group residents reported significantly improved confidence in diagnosis of chronic/recurrent headache, attention deficit hyperactivity disorder (ADHD), and developmental delay; initial management of ADHD and developmental delay; and secondary management of ADHD, developmental delay, and concussion/traumatic brain injury. Comparison-group residents reported significantly improved confidence only in diagnosis of developmental delay. Our multipronged intervention is a promising approach to improving pediatric resident training in pediatric neurology and may be generalizable to subspecialty collaborations for other residency programs.

Identifying Support Functions in Developmental Relationships: A Self-Determination Perspective

ERIC Educational Resources Information Center

Janssen, Suzanne; van Vuuren, Mark; de Jong, Menno D. T.

2013-01-01

This study examines the content of developmental networks from the perspective of self-determination theory. We qualitatively examine 18 proteges' constellations of developmental relationships to identify specific types of developmental support functions. Our study shows that the adoption of self-determination theory leads to a theory-based…

Care Coordination for Youth With Mental Health Disorders in Primary Care.

PubMed

Hobbs Knutson, Katherine; Meyer, Mark J; Thakrar, Nisha; Stein, Bradley D

2018-01-01

Many children are treated for mental health disorders in primary care settings. The system of care (SOC) provides a framework for collaboration among pediatric mental health providers, but it is unclear if youth treated for mental health disorders in primary care receive such coordination. At the South Boston Community Health Center from September /2012 to August 2013 for 74 individuals ≤18 years, the odds of contact with SOC agencies (mental health, education, child protective services, juvenile justice and developmental disabilities) were compared for mental health treatment in primary versus specialty care. The odds of SOC contact within primary care were lower compared to specialty care (OR = 0.43, 95% CI = 0.29-0.66), specifically for mental health (OR = 0.54, 95% CI = 0.25-1.2), education (OR = 0.12, 95% CI = 0.050-0.28), and child protective services (OR = 0.64, 95% CI = 0.22-1.9). As care coordination may improve health outcomes, increased support and education for care coordination specific to youth treated for mental health disorders in primary care settings may be warranted.

Development and Evaluation of a Staff Training Program on Palliative Care for Persons with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Hahn, Joan E.; Cadogan, Mary P.

2011-01-01

Persons with intellectual and developmental disabilities (I/DD) face barriers and disparities at end of life. Among these barriers are limited educational opportunities and a paucity of targeted training materials on palliative care for staff who provide their day-to-day care. This paper reports on a three-phase project undertaken to develop,…

The relationship between sources and functions of social support and dimensions of child- and parent-related stress.

PubMed

Guralnick, M J; Hammond, M A; Neville, B; Connor, R T

2008-12-01

In this longitudinal study, we examined the relationship between the sources and functions of social support and dimensions of child- and parent-related stress for mothers of young children with mild developmental delays. Sixty-three mothers completed assessments of stress and support at two time points. Multiple regression analyses revealed that parenting support during the early childhood period (i.e. advice on problems specific to their child and assistance with child care responsibilities), irrespective of source, consistently predicted most dimensions of parent stress assessed during the early elementary years and contributed unique variance. General support (i.e. primarily emotional support and validation) from various sources had other, less widespread effects on parental stress. The multidimensional perspective of the construct of social support that emerged suggested mechanisms mediating the relationship between support and stress and provided a framework for intervention.

Nursing Perspectives on Cancer Screening in Adults with Intellectual and Other Developmental Disabilities

ERIC Educational Resources Information Center

Tyler, Carl V.; Zyzanski, Stephen J.; Panaite, Vanessa; Council, Linda

2010-01-01

Health care disparities have been documented in cancer screenings of adults with intellectual and other developmental disabilities. Developmental disabilities nurses were surveyed to better understand and improve this deficiency. Two thirds of respondents believed that adults with intellectual and developmental disabilities received fewer cancer…

Issues in the Medication Management Process in People Who Have Intellectual and Developmental Disabilities: A Qualitative Study of the Caregivers' Perspective.

PubMed

Erickson, Steven R; Salgado, Teresa M; Tan, Xi

2016-12-01

People who have intellectual and developmental disabilities (IDD) often rely on caregivers to assist in the medication management process. The aim of this study was to learn from caregivers, who are either family or support staff, what major issues arise throughout the process of managing medication and how these might be addressed. Problems identified by caregivers include (a) prescribers understanding of insurance and agency policies regarding medication utilization; (b) lack of continuity of care and accuracy of the medication record as well as clinical records; (c) poor communication among patients, caregivers, and clinicians; (d) patient willingness to take medication; (e) caregiver understanding and training of medication-related topics; and (f) the health system being unprepared to work with people who have IDD.

Using developmental research to design innovative knowledge translation technology for spinal cord injury in primary care: Actionable Nuggets™ on SkillScribe™.

PubMed

Smith, Karen M; Naumann, Danielle N; McDiarmid Antony, Laura; McColl, Mary Ann; Aiken, Alice

2014-09-01

Actionable Nuggets™ for spinal cord injury (SCI) are a knowledge translation tool facilitating evidence-based primary care practice, originally developed in 2010 and refined in 2013. Evaluation results from these two phases of development have informed the design of SkillScribe™, an innovative electronic platform intended to offer reflective continuing medical education (CME) programming through mobile devices in order to support the key features of the Actionable Nuggets™ approach. This brief article describes the ongoing development of Actionable Nuggets™ for SCI on SkillScribe™ by: (1) summarizing the work to date on Actionable Nuggets™; (2) describing evaluation results of Actionable Nuggets™; (3) placing SkillScribe™ in the context of adult education. Developmental Research Design. Canadian primary care. Primary care physicians; specialist physicians. Twenty educational modules on SCI. Pre- and post-test knowledge survey, feedback and use statistics, impact assessment survey, qualitative analysis of evaluation data. In both hard copy and electronic form, physicians report that Actionable Nuggets™ are an acceptable and useful approach to providing CME for low-prevalence, high-impact conditions like SCI. The key elements of this tool are that they: offer evidence-based information in small, focused "nuggets"; position information where physicians most frequently seek it; offer information in a format that permits direct translation into action in primary care; allow time for reflection; attach practice tools; and offer CME credit. Actionable Nuggets™ for SCI, delivered using a convenient and portable electronic medium, with time-released content and interactive testing has the potential to improve the primary care of patients with SCI.

What are the benefits of parental care? The importance of parental effects on developmental rate

PubMed Central

Klug, Hope; Bonsall, Michael B

2014-01-01

The evolution of parental care is beneficial if it facilitates offspring performance traits that are ultimately tied to offspring fitness. While this may seem self-evident, the benefits of parental care have received relatively little theoretical exploration. Here, we develop a theoretical model that elucidates how parental care can affect offspring performance and which aspects of offspring performance (e.g., survival, development) are likely to be influenced by care. We begin by summarizing four general types of parental care benefits. Care can be beneficial if parents (1) increase offspring survival during the stage in which parents and offspring are associated, (2) improve offspring quality in a way that leads to increased offspring survival and/or reproduction in the future when parents are no longer associated with offspring, and/or (3) directly increase offspring reproductive success when parents and offspring remain associated into adulthood. We additionally suggest that parental control over offspring developmental rate might represent a substantial, yet underappreciated, benefit of care. We hypothesize that parents adjust the amount of time offspring spend in life-history stages in response to expected offspring mortality, which in turn might increase overall offspring survival, and ultimately, fitness of parents and offspring. Using a theoretical evolutionary framework, we show that parental control over offspring developmental rate can represent a significant, or even the sole, benefit of care. Considering this benefit influences our general understanding of the evolution of care, as parental control over offspring developmental rate can increase the range of life-history conditions (e.g., egg and juvenile mortalities) under which care can evolve. PMID:25360271

Developmental stages and spiritual coping responses among economically impoverished women living with HIV disease.

PubMed

Somlai, A M; Heckman, T G; Hackl, K; Morgan, M; Welsh, D

1998-01-01

Identifies environmental markers, situational appraisals, perceived ability to mediate situations and outcomes, primary coping strategies, and purposes served by religion and spirituality in 10 HIV-positive women recruited from a regional health care clinic. Findings indicated that the women experienced a disintegration of family during their early developmental years, yielding feelings of hopelessness and isolation; that their sexual development was marked by rape and incest, and their early adulthood was characterized by failed relationships, pregnancies, drugs, and alcohol. Reports that the women's religious influences were predominantly maternal and provided a model for intercessory prayer. Notes that prior to their diagnosis of HIV, participants described their coping as escapist, while after diagnosis they believed there was a divine intercession renewing their spiritual growth and connectedness with others. Reports that the women's personal spirituality was greatly influenced by prayer, television ministries, and reading the Bible. Suggests the interventions that actively recruit women into social support services, health care systems, and faith congregations are needed and that television ministries may serve as access points for connecting women with necessary services.

Self-efficacy with application to adolescent smoking cessation: a concept analysis.

PubMed

Heale, Roberta; Griffin, Mary T Q

2009-04-01

This paper is a report of a concept analysis of adolescent smoking cessation self-efficacy. Smoking cessation is a key preventive care/health promotion strategy offered by nurses worldwide. Most programming is tailored to adults although the reasons for smoking, along with coping strategies, resources and developmental stage, differ in adolescence. Understanding of the concept of self-efficacy as it relates to the adolescent population will assist nurses in addressing smoking cessation behaviours with this population. The CINAHL and Proquest Nursing databases were searched for papers published between 1977 and 2007 using the keywords self-efficacy, adolescents and smoking cessation. The Walker and Avant method of concept analysis was applied. Adolescent smoking cessation self-efficacy is the confidence, perceived capacity and perceived ability that the teen possesses to quit smoking. Identified antecedents include developmental stage, past life support, emotional support, coping strategies, resources and emotional status. Consequences are smoking cessation: positive or negative. Empirical measures are identified. Levels of self-efficacy have been shown to be an important consideration in the approach of nurses to smoking cessation counselling with the adolescent client. The theoretical definition for this concept will provide the basis for nurses to design appropriate interventions for use in smoking cessation programmes targeted to adolescents. This definition identifies the key attributes of this concept that should be addressed when caring for this population.

In-Home Respite Care Program Development. Background. Coordinator's Manual. Training Manual.

ERIC Educational Resources Information Center

Parham, J. D.; And Others

This volume consists of a background discussion, coordinator's manual, and training manual dealing with developing programs for the in-home respite care (IHRC) of the developmentally disabled. Addressed in the background information unit are the nature of developmental disabilities; program variables, planning, and funding; and practical…

Perspectives on Health Care of Adults with Developmental Disabilities

ERIC Educational Resources Information Center

Parish, Susan L.; Moss, Kathryn; Richman, Erica L.

2008-01-01

A focus group study was conducted with individuals with developmental disabilities to understand their perspectives on their health status, health promotion behaviors, and health care services they receive. The majority of participants reported good to excellent health, and all had some form of medical insurance. However, participants reported…

The Changing Role of Pediatric Well-Child Care

ERIC Educational Resources Information Center

Kuo, Alice A.; Inkelas, Moira

2007-01-01

Identifying potential developmental and behavioral problems during the first 3 years of life is an important factor in promoting a child's healthy development. The early identification of a potential developmental or behavioral problem leads to further evaluation and possible diagnosis or treatment if needed. Pediatric health care professionals…

Exposure of children with developmental delay to social determinants of poor health: cross-sectional case record review study.

PubMed

Emerson, E; Brigham, P

2015-03-01

Research on child development in general has highlighted the importance that the family environment plays in mediating the pathway between exposure to low socio-economic position (SEP) and child well-being. While child developmental models in intellectual disability have highlighted the interplay between social context, family environment and child development, little empirical work has attempted to formally evaluate the evidence in support of specific mediating pathways between low SEP and child outcomes. Secondary analysis of cross-sectional confidentialized needs analysis data collected in three Primary Care Trusts in England covering a total population of 1.25 million people. Case record reviews were undertaken for 46 023 households, 2236 (4.9%) of which contained a child in the target age range with developmental delay. Children with developmental delay, when compared with their non-disabled peers, were at significantly increased risk of poorer health outcomes and of being exposed to a wide range of social determinants of poor health. Controlling for between-group differences in exposure to social determinants of poor health reduced the risk of developmental delay being associated with poorer health outcomes by 45% for behaviour problems and 89% for risk of significant harm. For children with developmental delay, parenting difficulties appears to play a particularly significant role in partially mediating the effects of low SEP. The findings of the present study point to the potential effectiveness of family-focused early intervention to prevent the emergence and escalation of behavioural difficulties and health problems in children with developmental delay. © 2014 John Wiley & Sons Ltd.

Intervening to Improve Outcomes for Siblings in Foster Care: Conceptual, Substantive, and Methodological Dimensions of a Prevention Science Framework

PubMed Central

Kothari, Brianne H.; Blakeslee, Jennifer; Lamson-Siu, Emilie; Bank, Lew; Linares, L. Oriana; Waid, Jeffrey; Sorenson, Paul; Jimenez, Jessica; Pearson, Eva; Shlonsky, Aron

2014-01-01

In recent years, the child welfare field has devoted significant attention to siblings in foster care. Policymakers and practitioners have supported efforts to connect siblings via shared foster placements and visitation while researchers have focused on illuminating the empirical foundations of sibling placement and sibling intervention in child welfare. The current paper synthesizes literature on sibling relationship development and sibling issues in child welfare in the service of presenting a typology of sibling-focused interventions for use with foster youth. The paper provides two examples of current intervention research studies focused on enhancing sibling developmental processes and understanding their connection to child welfare outcomes. The paper concludes by presenting an emerging agenda informing policy, practice, and research on siblings in foster care. PMID:24634558

Highly resilient coping entails better perceived health, high social support and low morning cortisol levels in parents of children with autism spectrum disorder.

PubMed

Ruiz-Robledillo, N; De Andrés-García, S; Pérez-Blasco, J; González-Bono, E; Moya-Albiol, L

2014-03-01

The negative consequences of caring for people with developmental disabilities have been widely described. However, the ability to bounce back from the stress derived from care situations has been less studied. Those caregivers who have shown this ability are considered as resilient. This study aims to evaluate the relationship between resilience and self-reported health and cortisol awakening response (CAR) in a sample of caregivers of people with autism spectrum disorders (ASD). It also aims to evaluate the role of social support as a mediator in the association between resilience and health. Caregivers with higher resilience show better perceived health, lower morning cortisol levels, and less area under the curve with respect to ground (AUCg). Social support was positively related to resilience and mediated the relationship between resilience and perceived health. This mediating effect was not found in the association between resilience and CAR. Resilience could be a protective factor that modulates the negative consequences of chronic stress in the care context. Social support could be an important variable mediating the effects of resilience on health outcomes in caregivers. All these results must be considered when implementing effective psychological programs for helping caregivers. Copyright © 2013 Elsevier Ltd. All rights reserved.

Children with developmental disabilities at a pediatric hospital: staff education to prevent and manage challenging behaviors.

PubMed

Johnson, Norah L; Lashley, Joel; Stonek, Alice V; Bonjour, Annette

2012-12-01

Children with developmental disabilities may get frustrated in unpredictable hospital environments. Frustration may escalate to challenging behaviors, which are a safety concern and may contribute to staff and patient injuries, use of restraints, and procedure delay or cancelations. The purpose of this article was to describe a pilot staff education program on preventing and managing challenging behaviors of children with developmental disabilities at a pediatric hospital. The 2-hour-long education (1 hour on-line and 1 hour instructor led) content focused on family-centered care and communication skills, including verbal judo™ modified for use in the health care setting. Participants in the instructor-led sessions reported improved knowledge and decreased fear about caring for children with developmental disabilities. Relationships of the education and fewer staff injuries, fewer canceled procedures, and decreased use of restraints merit further study. Copyright © 2012 Elsevier Inc. All rights reserved.

Reducing newborn mortality in the Asia-Pacific region: Quality hospital services and community-based care.

PubMed

Milner, Kate M; Duke, Trevor; Bucens, Ingrid

2013-07-01

Improving newborn health and survival is an essential part of progression toward Millennium Development Goal 4 in the World Health Organization Western Pacific and South East Asian regions. Both community and facility-based services are required. Strategies to improve the quality of care provided for newborns in health clinics and district- and referral-level hospitals have been relatively neglected in most countries in the region and in the published literature. Indirect historical evidence suggests that improving facility-based care will be an increasing priority for improving newborn survival in Asia and the Pacific as newborn mortality rates decrease and health systems contexts change. There are deficiencies in many aspects of newborn care, including immediate care and care for seriously ill newborns, which contribute substantially to regional newborn morbidity and mortality. We propose a practical quality improvement approach, based on models and standards of newborn care for primary-, district- and referral-level heath facilities and incorporated within existing maternal, newborn and child health programmes. There are examples where such approaches are being used effectively. There is a need to produce more nurses, community health workers and doctors with skills in care of the well and the sick newborn, and there are World Health Organization models of training to support this, including guidelines on emergency obstetric and newborn care and the Pocket Book of Hospital Care for Children. There are also simple data collection and analysis programmes that can assist in auditing outcomes, problem identification and health services planning. Finally, with increased survival rates there are gaps in follow-up care for newborns at high risk of long-term health and developmental impairments, and addressing this will be necessary to ensure optimal developmental and health outcomes for these children. © 2013 The Authors. Journal of Paediatrics and Child Health © 2013 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

Clinical management of behavioral insomnia of childhood

PubMed Central

Vriend, Jennifer; Corkum, Penny

2011-01-01

Behavioral insomnia is highly prevalent, affecting approximately 25% of children. It involves difficulties initiating and maintaining sleep and frequently results in inadequate sleep, leading to an array of negative effects for both the child and the child’s family. In this paper, we describe a variety of empirically supported behavioral interventions for insomnia from infancy through adolescence. We explore how biological, cognitive, and psychosocial developmental changes contribute to behavioral insomnia and how these changes may affect sleep and behavioral interventions. We also discuss barriers that prevent families from accessing interventions, including why many empirically-supported behavioral interventions are overlooked by health care providers. PMID:22114537

Information needs of physicians, care coordinators, and families to support care coordination of children and youth with special health care needs (CYSHCN).

PubMed

Ranade-Kharkar, Pallavi; Weir, Charlene; Norlin, Chuck; Collins, Sarah A; Scarton, Lou Ann; Baker, Gina B; Borbolla, Damian; Taliercio, Vanina; Del Fiol, Guilherme

2017-09-01

Identify and describe information needs and associated goals of physicians, care coordinators, and families related to coordinating care for medically complex children and youth with special health care needs (CYSHCN). We conducted 19 in-depth interviews with physicians, care coordinators, and parents of CYSHCN following the Critical Decision Method technique. We analyzed the interviews for information needs posed as questions using a systematic content analysis approach and categorized the questions into information need goal types and subtypes. The Critical Decision Method interviews resulted in an average of 80 information needs per interview. We categorized them into 6 information need goal types: (1) situation understanding, (2) care networking, (3) planning, (4) tracking/monitoring, (5) navigating the health care system, and (6) learning, and 32 subtypes. Caring for CYSHCN generates a large amount of information needs that require significant effort from physicians, care coordinators, parents, and various other individuals. CYSHCN are often chronically ill and face developmental challenges that translate into intense demands on time, effort, and resources. Care coordination for CYCHSN involves multiple information systems, specialized resources, and complex decision-making. Solutions currently offered by health information technology fall short in providing support to meet the information needs to perform the complex care coordination tasks. Our findings present significant opportunities to improve coordination of care through multifaceted and fully integrated informatics solutions. © The Author 2017. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com

Addressing the Developmental and Mental Health Needs of Young Children in Foster Care

PubMed Central

LESLIE, LAUREL K.; GORDON, JEANNE N.; LAMBROS, KATINA; PREMJI, KAMILA; PEOPLES, JOHN; GIST, KRISTIN

2006-01-01

Research over the past two decades has consistently documented the high rates of young children entering the child protective services/child welfare system with developmental and mental health problems. There is an emerging evidence base for the role of early intervention services in improving outcomes for children with developmental and mental health problems in the general population that heavily relies on accurate and appropriate screening and assessment practices. The Child Welfare League of America, the American Academy of Pediatrics, and the American Academy of Child and Adolescent Psychiatry have all published guidelines concerning the importance of comprehensive assessments and appropriate referral to early intervention services for children entering out-of-home care. Recent federal legislation (P.L. 108–36) calls for increased collaboration between child welfare and public agencies to address the developmental and mental health needs of young children in foster care. This paper provides a framework for health, developmental, and mental health professionals seeking to partner with child welfare to develop and implement programs addressing these critical issues. PMID:15827467

Personal Care Services Utilization by Individuals with Developmental Disabilities

ERIC Educational Resources Information Center

Harrington, Charlene; Kang, Taewoon

2010-01-01

This study examined factors associated with the use of personal care services (PCS) and the amount of authorized hours in California in 2004-2005. Of those Medicaid-eligible individuals with developmental disabilities living at home, 31% received PCS. When we controlled for client need, gender, and age, individuals who were Asian/Pacific…

Costs of Epilepsy in an Intermediate Care Facility for Persons with Mental Retardation.

ERIC Educational Resources Information Center

Burke, Thomas A.; McKee, Jerry R.; Pathak, Dev S.; Donahue, Rafe M. J.; Parasuraman, T. V.; Batenhorst, Alice S.

1999-01-01

A study compared the cost of caring for 50 institutionalized persons with developmental disabilities and epilepsy with 50 individuals with developmental disabilities. Costs attributable to epilepsy were found to be approximately $825.00 and $918.00 per person over a six-month period. Personnel, drugs, hospitalization, and laboratories/procures…

Use of Transition Resources by Primary Care Providers for Youth with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Dressler, Paul B.; Nguyen, Teresa K.; Moody, Eric J.; Friedman, Sandra L.; Pickler, Laura

2018-01-01

Youth with intellectual and developmental disabilities (IDD) often experience difficulties with successful transition from pediatric to adult healthcare. A consultative Transition Clinic for youth with IDD was piloted as a quality improvement project, and assessed the engagement of primary care providers (PCPs) for transition planning after…

Maternal Perceptions of Care-Giving of Children with Developmental Disabilities in the United Arab Emirates

ERIC Educational Resources Information Center

Crabtree, Sara Ashencaen

2007-01-01

Background: This qualitative study discusses family care-giving of children with developmental disabilities in the United Arab Emirates. Findings were reviewed in terms of the influence of culture on gender norms governing parental behaviour and aspirations. Method: An ethnographic approach is used in which parent participants were interviewed…

The Care and Feeding of a Successful Collaborative Partnership.

ERIC Educational Resources Information Center

Huth, Harvey; Denny, Verna Haskins; Nardino, Charles; Bailey, Robert; Street, David; Sinnott, Judy; Spector, Harriet; Trolio, Peter; Dillman, Jenny

In this document, representatives from the four partners involved in a self-directed distance learning program for developmental aides responsible for caring for persons with developmental disabilities and/or mental retardation (the City University of New York, a labor union, an executive employee relations office, and a state agency involved in…

Adolescent Development: A Course for the Child Care Worker.

ERIC Educational Resources Information Center

Shull, Jan

This instructor's manual presents a course designed to help the child care worker gain a better understanding of normal adolescent development, by focusing on adolescent behavior and developmental tasks, and by exploring ways in which adolescents may accomplish these developmental tasks. The manual is divided into four sessions which may involve 1…

Understanding shame in adults: retrospective perceptions of parental-bonding during childhood.

PubMed

Lutwak, N; Ferrari, J R

1997-10-01

The association between perceptions of parental-bonding style during childhood and moral affect of shame at young adulthood were examined with 264 women and 140 men (mean age [+/- SD] = 20.4 +/- 1.6 years old). Shame affect was significantly positively related to fear of negative evaluation by others and social avoidance, and negatively related to recalled parental care in one's childhood. Multiple regression analyses indicated that maternal protectiveness, paternal care, fear of negative social evaluation, and social avoidance were significant predictors of shame, explaining 41% of the variance. Results support object relations theory, which states that shame is a moral affect associated with social evaluation apprehension and may have developmental implications for one's parental relations.

Knowledge and Perceptions of Newly Graduated Medical Practitioners in Malaysia of Their Role in Medical Care of People with Developmental Disabilities

ERIC Educational Resources Information Center

Moyle, Judith L.; Iacono, Teresa; Liddell, Merilyn

2010-01-01

Improving content and consistency on developmental disabilities in undergraduate medical curricula has been recommended as a means of improving health outcomes for people with developmental disabilities. Although often the subject of studies in Western countries, little is known about content on developmental disabilities in undergraduate…

Validity of a family-centered approach for assessing infants' social-emotional wellbeing and their developmental context: a prospective cohort study.

PubMed

Hielkema, Margriet; De Winter, Andrea F; Reijneveld, Sijmen A

2017-06-15

Family-centered care seems promising in preventive pediatrics, but evidence is lacking as to whether this type of care is also valid as a means to identify risks to infants' social-emotional development. We aimed to examine the validity of such a family-centered approach. We conducted a prospective cohort study. During routine well-child visits (2-15 months), Preventive Child Healthcare (PCH) professionals used a family-centered approach, assessing domains as parents' competence, role of the partner, social support, barriers within the care-giving context, and child's wellbeing for 2976 children as protective, indistinct or a risk. If, based on the overall assessment (the families were labeled as "cases", N = 87), an intervention was considered necessary, parents filled in validated questionnaires covering the aforementioned domains. These questionnaires served as gold standards. For each case, two controls, matched by child-age and gender, also filled in questionnaires (N = 172). We compared PCH professionals' assessments with the parent-reported gold standards. Moreover, we evaluated which domain mostly contributed to the overall assessment. Spearman's rank correlation coefficients between PCH professionals' assessments and gold standards were overall reasonable (Spearman's rho 0.17-0.39) except for the domain barriers within the care-giving context. Scores on gold standards were significantly higher when PCH assessments were rated as "at risk" (overall and per domain).We found reasonable to excellent agreement regarding the absence of risk factors (negative agreement rate: 0.40-0.98), but lower agreement regarding the presence of risk factors (positive agreement rate: 0.00-0.67). An "at risk" assessment for the domain Barriers or life events within the care-giving context contributed most to being overall at risk, i.e. a case, odds ratio 100.1, 95%-confidence interval: 22.6 - infinity. Findings partially support the convergent validity of a family-centered approach in well-child care to assess infants' social-emotional wellbeing and their developmental context. Agreement was reasonable to excellent regarding protective factors, but lower regarding risk factors. Netherlands Trialregister, NTR2681. Date of registration: 05-01-2011, URL: http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=2681 .

The psychophysiological effects of music therapy in intensive care units.

PubMed

Austin, Donna

2010-04-01

This article reviews the evidence for using music therapy with young people who are supported by mechanical ventilation. The author argues that music therapy is essential for developing a holistic approach focusing on the developmental level of a child or young person, as well as being an inexpensive, non-pharmacological, non-invasive therapy, with significant physiological and psychological benefits. She argues that more research is needed in this area to develop a sound evidence base on which guidelines to inform practice could be based.

Tailoring the Psychotherapy to the Borderline Patient

PubMed Central

HORWITZ, LEONARD; GABBARD, GLEN O.; ALLEN, JON G.; COLSON, DONALD B.; FRIESWYK, SIEBOLT; NEWSOM, GAVIN E.; COYNE, LOLAFAYE

1996-01-01

Views still differ as to the optimal psychodynamic treatment of borderline patients. Recommendations range from psychoanalysis and exploratory psychotherapy to an explicitly supportive treatment aimed at strengthening adaptive defenses. The authors contend that no single approach is appropriate for all patients in this wide-ranging diagnostic category, which spans a continuum from close-to-neurotic to close-to-psychotic levels of functioning. Careful differentiations based on developmental considerations, ego structures, and relationship patterns provide the basis for the optimal treatment approach. PMID:22700301

Health Care Expenditures After Initiating Long-term Services and Supports in the Community Versus in a Nursing Facility.

PubMed

Newcomer, Robert J; Ko, Michelle; Kang, Taewoon; Harrington, Charlene; Hulett, Denis; Bindman, Andrew B

2016-03-01

Individuals who receive long-term services and supports (LTSS) are among the most costly participants in the Medicare and Medicaid programs. To compare health care expenditures among users of Medicaid home and community-based services (HCBS) versus those using extended nursing facility care. Retrospective cohort analysis of California dually eligible adult Medicaid and Medicare beneficiaries who initiated Medicaid LTSS, identified as HCBS or extended nursing facility care, in 2006 or 2007. Propensity score matching for demographic, health, and functional characteristics resulted in a subsample of 34,660 users who initiated Medicaid HCBS versus extended nursing facility use. Those with developmental disabilities or in managed care plans were excluded. Average monthly adjusted acute, postacute, long-term, and total Medicare and Medicaid expenditures for the 12 months following initiation of either HCBS or extended nursing facility care. Those initiating extended nursing facility care had, on average, $2919 higher adjusted total health care expenditures per month compared with those who initiated HCBS. The difference was primarily attributable to spending on LTSS $2855. On average, the monthly LTSS expenditures were higher for Medicare $1501 and for Medicaid $1344 when LTSS was provided in a nursing facility rather than in the community. The higher cost of delivering LTSS in a nursing facility rather than in the community was not offset by lower acute and postacute spending. Medicare and Medicaid contribute similar amounts to the LTSS cost difference and both could benefit financially by redirecting care from institutions to the community.

Variation in teenage mothers' experiences of child care and other components of welfare reform: selection processes and developmental consequences.

PubMed

Yoshikawa, H; Rosman, E A; Hsueh, J

2001-01-01

Developmental evaluations of the current wave of welfare reform programs present challenges with regard to (1) assessing child outcomes; (2) accounting for heterogeneity among low-income families in both baseline characteristics and involvement in self-sufficiency activities and supports, and (3) development of alternatives to experimental approaches to causal inference. This study (N = 1,079) addresses these challenges by examining effects on 4- to 6-year-old children of different patterns of child care, self-sufficiency activities, and other service utilization indicators among experimental-group mothers in a 16-site welfare reform program. Outcomes in areas of cognitive ability and behavior problems were investigated. The study identified seven subgroups of participants engaging in different patterns of service utilization and activity involvement. A two-stage simultaneous equation methodology was used to account for selection, and effects on child cognitive ability of participation in specific patterns of services and activities were found. For example, children of mothers characterized by high levels of involvement in center-based child care, education, and job training showed higher levels of cognitive ability than children of mothers in groups characterized by high involvement in center-based care and education, or center-based care and job training. In addition, children of mothers in groups with high levels of involvement in any of these activities showed higher levels of cognitive ability than those with low levels of involvement. The bulk of selection effects occurred through site-level differences, rather than family-level socio-economic status or maternal depression indicators. Implications for welfare reform program and policy concerns are discussed.

Realities and Challenges of Support for Children with Special Needs in Nursery Schools

PubMed Central

Ishiguro, Kaori; Yoshioka, Shin-ichi

2016-01-01

Background Nursery schools and kindergartens have been struggling to cope with increasing numbers of children with special needs. Hence, we conducted a study on what nursery school teachers (NSTs) will require regarding learning and societal resources for supporting such children in the future. Methods A questionnaire survey was conducted for 2,476 NSTs employed in 154 nursery schools in Shimane and Kochi Prefectures. The questionnaires were sent by post to officials at each nursery school. The completed questionnaires were collected by the school officials and returned by post. In addition to statistical processing of the survey results, the content of the free description responses was analyzed using the KJ method. Results Responses were obtained from 1,509 NSTs at 118 nursery schools. Of the respondents, 90.7% had experienced difficulties coping with children with special needs, and 83.9% were in charge of caring for such children. Such children were enrolled in every childcare facility participating in the survey. The NSTs primarily needed to learn about specific coping methods, the illness, and skills for supporting parents; concerning the societal resources, they needed the addition of assistant NSTs, the implementation of age-five check-up, and the recruitment of mentors. The free description responses were categorized into the following five categories: demand for child care administration, cooperation with professional staff, support for parents, developmental health checkups, and on-site needs for nursery childcare. One of the specific demands was to develop human resources capable of providing parents with appropriate advice. Conclusion The results have shown that all NSTs are required to deal with children with special needs. Future challenges for providing support for such children are: ⅰ) to raise awareness of such children; ⅱ) to eliminate regional disparities; ⅲ) to provide professional training for NSTs specializing in developmental disorders; ⅳ) to train and re-educate assistant NSTs and ⅴ) to enhance infant screening. PMID:27046948

Realities and Challenges of Support for Children with Special Needs in Nursery Schools.

PubMed

Ishiguro, Kaori; Yoshioka, Shin-Ichi

2016-03-01

Nursery schools and kindergartens have been struggling to cope with increasing numbers of children with special needs. Hence, we conducted a study on what nursery school teachers (NSTs) will require regarding learning and societal resources for supporting such children in the future. A questionnaire survey was conducted for 2,476 NSTs employed in 154 nursery schools in Shimane and Kochi Prefectures. The questionnaires were sent by post to officials at each nursery school. The completed questionnaires were collected by the school officials and returned by post. In addition to statistical processing of the survey results, the content of the free description responses was analyzed using the KJ method. Responses were obtained from 1,509 NSTs at 118 nursery schools. Of the respondents, 90.7% had experienced difficulties coping with children with special needs, and 83.9% were in charge of caring for such children. Such children were enrolled in every childcare facility participating in the survey. The NSTs primarily needed to learn about specific coping methods, the illness, and skills for supporting parents; concerning the societal resources, they needed the addition of assistant NSTs, the implementation of age-five check-up, and the recruitment of mentors. The free description responses were categorized into the following five categories: demand for child care administration, cooperation with professional staff, support for parents, developmental health checkups, and on-site needs for nursery childcare. One of the specific demands was to develop human resources capable of providing parents with appropriate advice. The results have shown that all NSTs are required to deal with children with special needs. Future challenges for providing support for such children are: ⅰ) to raise awareness of such children; ⅱ) to eliminate regional disparities; ⅲ) to provide professional training for NSTs specializing in developmental disorders; ⅳ) to train and re-educate assistant NSTs and ⅴ) to enhance infant screening.

The role of python eggshell permeability dynamics in a respiration-hydration trade-off.

PubMed

Stahlschmidt, Zachary R; Heulin, Benoit; DeNardo, Dale F

2010-01-01

Parental care is taxonomically widespread because it improves developmental conditions and thus fitness of offspring. Although relatively simplistic compared with parental behaviors of other taxa, python egg-brooding behavior exemplifies parental care because it mediates a trade-off between embryonic respiration and hydration. However, because egg brooding increases gas-exchange resistance between embryonic and nest environments and because female pythons do not adjust their brooding behavior in response to the increasing metabolic requirements of developing offspring, python egg brooding imposes hypoxic costs on embryos during the late stages of incubation. We conducted a series of experiments to determine whether eggshells coadapted with brooding behavior to minimize the negative effects of developmental hypoxia. We tested the hypotheses that python eggshells (1) increase permeability over time to accommodate increasing embryonic respiration and (2) exhibit permeability plasticity in response to chronic hypoxia. Over incubation, we serially measured the atomic and structural components of Children's python (Antaresia childreni) eggshells as well as in vivo and in vitro gas exchange across eggshells. In support of our first hypothesis, A. childreni eggshells exhibited a reduced fibrous layer, became more permeable, and facilitated greater gas exchange as incubation progressed. Our second hypothesis was not supported, as incubation O(2) concentration did not affect the shells' permeabilities to O(2) and H(2)O vapor. Our results suggest that python eggshell permeability changes during incubation but that the alterations over time are fixed and independent of environmental conditions. These findings are of broad evolutionary interest because they demonstrate that, even in relatively simple parental-care models, successful parent-offspring relationships depend on adjustments made by both the parent (i.e., egg-brooding behavioral shifts) and the offspring (i.e., changes in eggshell permeability).

The role of social buffering on chronic disruptions in quality of care: evidence from caregiver-based interventions in foster children.

PubMed

Flannery, Jessica E; Beauchamp, Kathryn G; Fisher, Philip A

2017-02-01

There is growing evidence that social support can buffer the physiological stress response, specifically cortisol reactivity. We use a developmental framework to review the importance of social buffering in early childhood, a period of heightened plasticity for programming of the hypothalamic-pituitary-adrenal (HPA) axis. The social environment, in which parents play the largest role in early life, is a critical agent in the developmental trajectory of the HPA axis. A prevailing model of social buffering primarily focuses on the role of social support in the context of acute stressors and cortisol response. This review expands this model to provide evidence of the mechanism of social buffering, or lack thereof, across periods of chronic stress by applying the social buffer model to children involved in the child welfare system. We also highlight current interventions that capitalize on the mechanism of social buffering to modify HPA axis functioning across childhood. Last, we synthesize our findings using the social buffering framework to inform future targeted interventions.

SPEEDY babies: A putative new behavioral syndrome of unbalanced motor-speech development

PubMed Central

Haapanen, Marja-Leena; Aro, Tuomo; Isotalo, Elina

2008-01-01

Even though difficulties in motor development in children with speech and language disorders are widely known, hardly any attention is paid to the association between atypically rapidly occurring unassisted walking and delayed speech development. The four children described here presented with a developmental behavioral triad: 1) atypically speedy motor development, 2) impaired expressive speech, and 3) tongue carriage dysfunction resulting in related misarticulations. Those characteristics might be phenotypically or genetically clustered. These children didn’t have impaired cognition, neurological or mental disease, defective sense organs, craniofacial dysmorphology or susceptibility to upper respiratory infections, particularly recurrent otitis media. Attention should be paid on discordant and unbalanced achievement of developmental milestones. Present children are termed SPEEDY babies, where SPEEDY refers to rapid independent walking, SPEE and DY to dyspractic or dysfunctional speech development and lingual dysfunction resulting in linguoalveolar misarticulations. SPEEDY babies require health care that recognizes and respects their motor skills and supports their needs for motor activities and on the other hand include treatment for impaired speech. The parents may need advice and support with these children. PMID:19337462

Collaborating in the context of co-location: a grounded theory study.

PubMed

Wener, Pamela; Woodgate, Roberta L

2016-03-10

Most individuals with mental health concerns seek care from their primary care provider, who may lack comfort, knowledge, and time to provide care. Interprofessional collaboration between providers improves access to primary mental health services and increases primary care providers' comfort offering these services. Building and sustaining interprofessional relationships is foundational to collaborative practice in primary care settings. However, little is known about the relationship building process within these collaborative relationships. The purpose of this grounded theory study was to gain a theoretical understanding of the interprofessional collaborative relationship-building process to guide health care providers and leaders as they integrate mental health services into primary care settings. Forty primary and mental health care providers completed a demographic questionnaire and participated in either an individual or group interview. Interviews were audio-recorded and transcribed verbatim. Transcripts were reviewed several times and then individually coded. Codes were reviewed and similar codes were collapsed to form categories using using constant comparison. All codes and categories were discussed amongst the researchers and the final categories and core category was agreed upon using constant comparison and consensus. A four-stage developmental interprofessional collaborative relationship-building model explained the emergent core category of Collaboration in the Context of Co-location. The four stages included 1) Looking for Help, 2) Initiating Co-location, 3) Fitting-in, and 4) Growing Reciprocity. A patient-focus and communication strategies were essential processes throughout the interprofessional collaborative relationship-building process. Building interprofessional collaborative relationships amongst health care providers are essential to delivering mental health services in primary care settings. This developmental model describes the process of how these relationships are co-created and supported by the health care region. Furthermore, the model emphasizes that all providers must develop and sustain a patient-focus and communication strategies that are flexible. Applying this model, health care providers can guide the creation and sustainability of primary care interprofessional collaborative relationships. Moreover, this model may guide health care leaders and policy makers as they initiate interprofessional collaborative practice in other health care settings.

Using developmental research to design innovative knowledge translation technology for spinal cord injury in primary care: Actionable Nuggets™ on SkillScribe™

PubMed Central

Smith, Karen M.; Naumann, Danielle N.; McDiarmid Antony, Laura; McColl, Mary Ann; Aiken, Alice

2014-01-01

Context/Objective Actionable Nuggets™ for spinal cord injury (SCI) are a knowledge translation tool facilitating evidence-based primary care practice, originally developed in 2010 and refined in 2013. Evaluation results from these two phases of development have informed the design of SkillScribe™, an innovative electronic platform intended to offer reflective continuing medical education (CME) programming through mobile devices in order to support the key features of the Actionable Nuggets™ approach. This brief article describes the ongoing development of Actionable Nuggets™ for SCI on SkillScribe™ by: (1) summarizing the work to date on Actionable Nuggets™; (2) describing evaluation results of Actionable Nuggets™; (3) placing SkillScribe™ in the context of adult education. Design Developmental Research Design. Setting Canadian primary care. Participants Primary care physicians; specialist physicians. Interventions Twenty educational modules on SCI. Outcome measures Pre- and post-test knowledge survey, feedback and use statistics, impact assessment survey, qualitative analysis of evaluation data. Results In both hard copy and electronic form, physicians report that Actionable Nuggets™ are an acceptable and useful approach to providing CME for low-prevalence, high-impact conditions like SCI. The key elements of this tool are that they: offer evidence-based information in small, focused “nuggets”; position information where physicians most frequently seek it; offer information in a format that permits direct translation into action in primary care; allow time for reflection; attach practice tools; and offer CME credit. Conclusion Actionable Nuggets™ for SCI, delivered using a convenient and portable electronic medium, with time-released content and interactive testing has the potential to improve the primary care of patients with SCI. PMID:25229739

Reducing Problem Behavior during Care-Giving in Families of Preschool-Aged Children with Developmental Disabilities

ERIC Educational Resources Information Center

Plant, Karen M.; Sanders, Matthew R.

2007-01-01

This study evaluated two variants of a behavioral parent training program known as Stepping Stones Triple P (SSTP) using 74 preschool-aged children with developmental disabilities. Families were randomly allocated to an enhanced parent training intervention that combined parenting skills and care-giving coping skills (SSTP-E), standard parent…

Assessment of Needs of Adults with Developmental Disabilities in Skilled Nursing and Intermediate Care Facilities in Illinois.

ERIC Educational Resources Information Center

Uehara, Edwina S.; And Others

1991-01-01

This study evaluated 2,815 adults with developmental disabilities in 328 Illinois intermediate care and skilled nursing facilities. Only 10 percent were determined to be appropriately placed in medical settings; 27 percent were enrolled in day training programs; and many individuals recommended for alternative residential settings had medical and…

The State of the Science of Health and Wellness for Adults with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Anderson, Lynda Lahti; Humphries, Kathy; McDermott, Suzanne; Marks, Beth; Sisirak, Jasmina; Larson, Sheryl

2013-01-01

Historically, people with intellectual and developmental disabilities (IDD) have experienced health disparities related to several factors including: a lack of access to high quality medical care, inadequate preparation of health care providers to meet their needs, the social determinants of health (e.g., poverty, race and gender), and the failure…

Arnold Gesell and the maturation controversy.

PubMed

Dalton, Thomas C

2005-01-01

This article examines the work of Arnold Lucius Gesell and argues that he not only paved the way for contemporary research in motor development, but that he and colleagues anticipated fundamental issues about growth that must be addressed by psychologists and neuroscientists who are committed to the advancement of developmental science. Arnold Lucius Gesell was a pioneer in developmental psychology when the field was in its infancy. He worked diligently for the rights of physically and mentally handicapped children to receive special education that would enable them to find gainful employment. Gesell's writings in books and popular magazines increased public awareness of and support for preschool education and better foster care for orphans. Despite these achievements, many of his successors have questioned his views about infant development. Developmental psychologists have criticized Gesell for proposing a stage theory of infant growth that has fallen into disfavor among contemporary researchers. His conception of development as a maturational process has been challenged for allegedly reducing complex behavioral, perceptual, and learning processes to genetic factors. The author rejects this overly simplistic interpretation and contends that Gesell's work continues to stand the test of time.

Birth to breast--a feeding care map for the NICU: helping the extremely low birth weight infant navigate the course.

PubMed

Dougherty, Dorothy; Luther, Maureen

2008-01-01

Breast milk has been shown to contribute significantly to positive neurodevelopmental and medical outcomes in the extremely low birth weight (ELBW) infant population. It is crucial that ELBW infants receive their mother's colostrum as a first feeding, followed by expressed breast milk for as long as possible. Evidence-based literature supports the difficult challenges both mothers and ELBW infants face if they are to succeed at breast pumping and breastfeeding. Influencing factors include the medical fragility of the infant, limited frequency and duration of kangaroo care between mother and infant, lack of an adequate volume of breast milk, as well as inconsistent or incorrect information surrounding the use of breast milk and breastfeeding. A feeding care map as described in this article can help the bedside nurse assist the mother-ELBW infant dyad in optimizing breast milk volumes, laying the groundwork for breastfeeding. Displaying supportive practices and preterm infant developmental milestones, the map categorizes infant, maternal, and dyad feeding issues along a progressive time line from admission to discharge.

Managing the care needs of low-income board-and-care home residents: a process of negotiating risks.

PubMed

Perkins, Molly M; Ball, Mary M; Whittington, Frank J; Combs, Bess L

2004-04-01

Small, low-income board-and-care homes play a critical role in the long-term care system, serving a variety of at-risk groups, including chronically mentally ill individuals, frail elders, and developmentally disabled adults. Unfortunately, the supply of homes available to serve these populations is decreasing. The purpose of this study, based on an in-depth ethnographic case study of one small (13-bed) African American-owned and -operated home in metropolitan Atlanta, was to understand how and why some homes continue to operate despite significant challenges. Grounded theory analysis showed that the survival of this home and residents' ability to remain in it involved a basic social process conceptualized as Negotiating Risks. This survival process often put participants at risk of losing their means of subsistence. Community support emerged as an important protective factor. Findings have implications for community interventions to increase these homes' survival and improve resident care.

[Introduction to Genetic/Rare Disease and the Application of Genetic Counseling].

PubMed

Chu, Shao-Yin; Weng, Chun-Ying

2017-10-01

Genetic disease or hereditary disease is a group of disorders that is caused by mutations in an individual's genome. The mutated genome or gene may be transmitted through the germ line during reproduction, causing certain recurrence risk in offspring and other family members. The heritability of these disorders is thus an important issue to deal with clinically. In Taiwan, a rare disease is defined as a disease that is prevalent in fewer than 1 in 10,000 individuals. As up to 80% of rare disease cases in Taiwan are genetic disease disorders, genetic disease may not rare. The pathophysiology of genetic/ rare disease is very complicated. Individual disorders may have their own unique mechanisms (such as Fragile X syndrome), with most of these mechanisms still unclear or unknown. The symptoms and signs of genetic/rare disease thus present the greatest variabilities and cause difficulties in making diagnoses. Most related patients may present multiple congenital anomalies, metabolic disorders, growth and developmental delays, defects in cognition, neuromuscular abnormalities, and defects in vision, hearing or other organ functions. Symptomatic and supportive treatment still comprise a major component of treatment of genetic/rare disease (with the exception of special formulae for several inborn errors of metabolic disease and enzyme replacement therapy in some lysosomal storage disease). Poor self-care ability is common and the burden on caregivers is huge. Most rare disease patients are treated using a comprehensive rehabilitation program that begins during very early childhood, receive individual educational programs, and are continuously monitored with regard to their growth, developmental, and nutritional status. Inter-professional patient care, genetic counseling, and the creation of family support networks play an important role in family management. Public awareness and the creation of appropriate social systems and resources allocation are mandatory for proper care. The incidence of each genetic/rare disease is rare, but collectively they are important public health issue and a challenge to medical care.

Survey of Developmental Students' Print and Online Metacognitive Reading

ERIC Educational Resources Information Center

Boudreaux, Mary Keller

2016-01-01

This quantitative study is a comparative analysis of developmental students' print and online support metacognitive strategy use. More specifically, a study was conducted utilizing the Metacognitive Awareness of Reading Strategies Inventory (MARSI) to measure developmental college students' awareness and perceived use of support reading strategies…

Predictors of receiving therapy among very low birth weight 2-year olds eligible for Part C early intervention in Wisconsin.

PubMed

McManus, Beth Marie; Robert, Stephanie; Albanese, Aggie; Sadek-Badawi, Mona; Palta, Mari

2013-07-11

The Individuals with Disabilities Education Act (Part C) authorizes states to establish systems to provide early intervention services (e.g., therapy) for children at risk, with the incentive of federal financial support. This study examines family and neighborhood characteristics associated with currently utilizing physical, occupational, or speech therapy among very low birthweight (VLBW) 2-year-old children who meet Wisconsin eligibility requirements for early intervention services (EI) due to developmental delay. This cross-sectional analysis used data from the Newborn Lung Project, a regional cohort study of VLBW infants hospitalized in Wisconsin's newborn intensive care units during 2003-2004. We included the 176 children who were age two at follow-up, and met Wisconsin state eligibility requirements for EI based on developmental delay. Exact logistic regression was used to describe child and neighborhood socio-demographic correlates of parent-reported receipt of therapy. Among VLBW children with developmental delay, currently utilizing therapy was higher among children with Medicaid (aOR = 5.3, 95% CI: 1.3, 28.3) and concomitant developmental disability (aOR = 5.2, 95% CI: 2.1, 13.3) and lower for those living in a socially more disadvantaged neighborhood (aOR=0.48, 95% CI: 0.21, 0.98, per tertile). Among a sample of VLBW 2-year olds with developmental delays who are EI-eligible in WI, 4 out of 5 were currently receiving therapy, per parent report. Participation in Medicaid positively influences therapy utilization. Children with developmental difficulties who live in socially disadvantaged neighborhoods are at highest risk for not receiving therapy.

Research on Children's Play: Analysis of Developmental and Early Education Journals from 2005 to 2007

ERIC Educational Resources Information Center

Cheng, Mei-Fang; Johnson, James E.

2010-01-01

Our review examined four early childhood journals ("Early Child Development and Care," "Early Childhood Education Journal," "Journal of Research in Childhood Education," and "Early Childhood Research Quarterly") and four developmental science journals ("Child Development," "Developmental Psychology," "Journal of Applied Developmental…

Indicators of Family Care for Development for Use in Multicountry Surveys

PubMed Central

Kariger, Patricia; Engle, Patrice; Britto, Pia M. Rebello; Sywulka, Sara M.; Menon, Purnima

2012-01-01

Indicators of family care for development are essential for ascertaining whether families are providing their children with an environment that leads to positive developmental outcomes. This project aimed to develop indicators from a set of items, measuring family care practices and resources important for caregiving, for use in epidemiologic surveys in developing countries. A mixed method (quantitative and qualitative) design was used for item selection and evaluation. Qualitative and quantitative analyses were conducted to examine the validity of candidate items in several country samples. Qualitative methods included the use of global expert panels to identify and evaluate the performance of each candidate item as well as in-country focus groups to test the content validity of the items. The quantitative methods included analyses of item-response distributions, using bivariate techniques. The selected items measured two family care practices (support for learning/stimulating environment and limit-setting techniques) and caregiving resources (adequacy of the alternate caregiver when the mother worked). Six play-activity items, indicative of support for learning/stimulating environment, were included in the core module of UNICEF's Multiple Cluster Indictor Survey 3. The other items were included in optional modules. This project provided, for the first time, a globally-relevant set of items for assessing family care practices and resources in epidemiological surveys. These items have multiple uses, including national monitoring and cross-country comparisons of the status of family care for development used globally. The obtained information will reinforce attention to efforts to improve the support for development of children. PMID:23304914

SARC Supplementary Tutor Handbook: Supporting Literacy for People with Intellectual/Developmental Challenges.

ERIC Educational Resources Information Center

Lockert, Richard

This handbook, which is intended for tutors, disability practitioners, and others working with adults with intellectual/developmental disabilities, contains supplementary materials for and about supporting literacy for people with intellectual/developmental challenges. The handbook is a product of the following activities: extensive research of…

Dental care in children with developmental disabilities: attention deficit disorder, intellectual disabilities, and autism.

PubMed

Charles, Jane M

2010-01-01

The Federal government reports that 13% of Americans between birth and 18 years of old meet the definition of a child with special health care needs. These children and young adults present unique challenges for both pediatric and general dentists to provide access to the oral health care system--establishing a treatment plan for those with unique medical, behavioral and dental needs and maintaining oral health over the lifetime. The purpose of this article was to describe the characteristics of 3 common developmental disabilities and the challenges these issues present to the oral health care practitioner.

Quality Group Home Care for Adults with Developmental Disabilities and/or Mental Health Disorders: Yearning for Understanding, Security and Freedom

ERIC Educational Resources Information Center

Shipton, Leah; Lashewicz, Bonnie M.

2017-01-01

Background: The purpose of this study was to uncover and understand factors influencing quality of care received by adults with developmental disabilities and/or mental health disorders living in group homes. Methods: The present authors conducted a secondary analysis of data from nine focus group discussions with adults with developmental…

Providing Quality Early Care and Education to Young Children Who Experience Maltreatment: A Review of the Literature

ERIC Educational Resources Information Center

Dinehart, Laura H.; Katz, Lynne F.; Manfra, Louis; Ullery, Mary Anne

2013-01-01

The current paper highlights the few studies that examine the role of early care and education on the developmental and early academic outcomes of children who experience maltreatment. First, we argue that children who experience maltreatment are at significant risk for poor developmental outcomes as a result of the chronic exposure to stress that…

Improving Health Behaviours of Latina Mothers of Youths and Adults with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Magaña, S.; Li, H.; Miranda, E.; Paradiso de Sayu, R.

2015-01-01

Background: Latina mothers who care for children with intellectual and developmental disabilities (IDD) over the lifespan struggle to take care of their own health needs in the context of their caregiving experience. Services are typically aimed at the persons with IDD and not their family caregivers. Yet, attending to family caregiver needs may…

Comparing Service Delivery Models for Children with Developmental Delays in Canada: Adaptive and Maladaptive Behaviours, Parental Perceptions of Stress and of Care

ERIC Educational Resources Information Center

Sladeczek, Ingrid E.; Fontil, Laura; Miodrag, Nancy; Karagiannakis, Anastasia; Amar, Daniel; Amos, Janet

2017-01-01

This study compares two service delivery models (community-based and centre-based), examining them in light of children's adaptive and maladaptive behaviours, and parental perceptions of stress and of care. More specifically, parents of 96 children with developmental delays assessed their children's adaptive and maladaptive behaviours and rated…

Predictors of Care-Giver Stress in Families of Preschool-Aged Children with Developmental Disabilities

ERIC Educational Resources Information Center

Plant, K. M.; Sanders, M. R.

2007-01-01

Background: This study examined the predictors, mediators and moderators of parent stress in families of preschool-aged children with developmental disability. Method: One hundred and five mothers of preschool-aged children with developmental disability completed assessment measures addressing the key variables. Results: Analyses demonstrated that…

The Quick Peek Program: A Model for Developmental Screening within Underserved Communities

ERIC Educational Resources Information Center

Harris, Jill; Norton, Amy

2016-01-01

Developmental screening of young children is important in all populations, especially underserved communities with known health care disparities. The American Academy of Pediatrics created guidelines and a toolkit for pediatricians to conduct developmental surveillance and screening, yet these guidelines are not uniformly implemented within…

Engaging Pediatricians in Developmental Screening: The Effectiveness of Academic Detailing

ERIC Educational Resources Information Center

Honigfeld, Lisa; Chandhok, Laura; Spiegelman, Kenneth

2012-01-01

Use of formal developmental screening tools in the pediatric medical home improves early identification of children with developmental delays and disorders, including Autism Spectrum Disorders. A pilot study evaluated the impact of an academic detailing module in which trainers visited 43 pediatric primary care practices to provide education about…

Educating Pediatric Residents about Developmental and Social-Emotional Health

ERIC Educational Resources Information Center

Bauer, Sarah C.; Smith, Peter J.; Chien, Alyna T.; Berry, Anita D.; Msall, Michael

2009-01-01

Enhancing Developmentally Oriented Primary Care (EDOPC) is a formal didactic curriculum based on Healthy Steps materials that is designed to improve practicing pediatricians' knowledge and confidence in developmental screening within the medical home. We modified the EDOPC program to provide a formal curriculum to pediatric residents serving…

Transition to Adulthood and Antiretroviral Adherence Among HIV-Positive Young Black Men Who Have Sex With Men

PubMed Central

Andes, Karen; Gilliard, Danielle; Chakraborty, Rana; del Rio, Carlos; Malebranche, David J.

2015-01-01

Objectives. We conducted a qualitative study of HIV-positive young Black men who have sex with men (YBMSM) to explore their experiences of living with HIV and adhering to antiretroviral medications (ARVs) within the developmental context of their transition to adulthood. Methods. We conducted life history interviews with 20 HIV-positive YBMSM in Atlanta, Georgia, engaged in outpatient HIV care. We addressed these questions: (1) How do YBMSM living with HIV experience the transition to adulthood? and (2) What are the important sociocontextual influences on ARV adherence for YBMSM? Results. Successful transition to adulthood and optimal ARV adherence were inextricably linked. HIV’s detrimental impact on development was moderated by the degree of physical illness at diagnosis. Many participants described resilient trajectories while coping with HIV. Adherence problems occurred primarily among participants who were not meeting their developmental goals. Conclusions. Our findings support the need for early diagnosis and linkage to care, as well as the need to develop holistic, resilience-based interventions focusing on transition to adulthood. These findings have implications for individual clinical outcomes as well as ARV-based prevention efforts among YBMSM. PMID:24922167

Medical-Legal Strategies to Improve Infant Health Care: A Randomized Trial.

PubMed

Sege, Robert; Preer, Genevieve; Morton, Samantha J; Cabral, Howard; Morakinyo, Oluwatomisin; Lee, Vonne; Abreu, Catarina; De Vos, Edward; Kaplan-Sanoff, Margot

2015-07-01

Changes in health care delivery create opportunities to improve systems to better meet the needs of low-income families while achieving quality benchmarks. Families of healthy newborns receiving primary care at a single large urban safety-net hospital participated. Intervention families were randomly assigned a family specialist who provided support until the 6-month routine health care visit. The Developmental Understanding and Legal Collaboration for Everyone (DULCE) intervention is based on the Strengthening Families approach and incorporated components of the Healthy Steps and Medical-Legal Partnership models. Medical record reviews determined use of preventive and emergency care. Surveys conducted at baseline, postintervention (6 months), and follow-up (12 months) were used to determine hardship and attainment of concrete supports. Three hundred thirty families participated in the study. At baseline, 73% of families reported economic hardships. Intervention parents had an average of 14 contacts with the family specialist, and 5 hours of total contact time. Intervention infants were more likely to have completed their 6-month immunization schedule by age 7 months (77% vs 63%, P < .005) and by 8 months (88% vs 77%, P < .01). Intervention infants were more likely to have 5 or more routine preventive care visits by age 1 year (78% vs 67%, P < .01) and were less likely to have visited the emergency department by age 6 months (37% vs 49.7%, P < .03). The DULCE intervention accelerated access to concrete resources (P = .029). Assignment to the Project DULCE intervention led to improvements in preventive health care delivery and utilization and accelerated access to concrete supports among low-income families. Copyright © 2015 by the American Academy of Pediatrics.

Well-Being and Support Systems of Taiwanese Mothers of Young Children with Developmental Disabilities

ERIC Educational Resources Information Center

Ho, Tzu-Hua

2013-01-01

This study investigated the influences of children's adaptive skills, problem behaviors, and parent support systems (informal support and formal professional support) on maternal well-being (health and stress) in Taiwanese mothers of young children with developmental disabilities. The study examined the moderating effects of formal support and…

Child Development

MedlinePlus

... ARTICLES Scientific articles. RESEARCH Legacy for Children™ study. Child Development: What's New Article: Differences in health care, family, ... Disorders, Learning Disorders, and other developmental conditions. ... Development Basics Early Brain Development Developmental Screening Screening for ...

Medical care capabilities for Space Station Freedom: A phase approach

NASA Technical Reports Server (NTRS)

Doarn, C. R.; Lloyd, C. W.

1992-01-01

As a result of Congressional mandate Space Station Freedom (SSF) was restructured. This restructuring activity has affected the capabilities for providing medical care on board the station. This presentation addresses the health care facility to be built and used on the orbiting space station. This unit, named the Health Maintenance Facility (HMF) is based on and modeled after remote, terrestrial medical facilities. It will provide a phased approach to health care for the crews of SSF. Beginning with a stabilization and transport phase, HMF will expand to provide the most advanced state of the art therapeutic and diagnostic capabilities. This presentation details the capabilities of such a phased HMF. As Freedom takes form over the next decade there will be ever-increasing engineering and scientific developmental activities. The HMF will evolve with this process until it eventually reaches a mature, complete stand-alone health care facility that provides a foundation to support interplanetary travel. As man's experience in space continues to grow so will the ability to provide advanced health care for Earth-orbital and exploratory missions as well.

Substantial Goodness and Nascent Human Life.

PubMed

Floyd, Shawn

2015-09-01

Many believe that moral value is--at least to some extent--dependent on the developmental states necessary for supporting rational activity. My paper rejects this view, but does not aim simply to register objections to it. Rather, my essay aims to answer the following question: if a human being's developmental state and occurrent capacities do not bequeath moral standing, what does? The question is intended to prompt careful consideration of what makes human beings objects of moral value, dignity, or (to employ my preferred term) goodness. Not only do I think we can answer this question, I think we can show that nascent human life possesses goodness of precisely this sort. I appeal to Aquinas's metaethics to establish the conclusion that the goodness of a human being--even if that being is an embryo or fetus--resides at the substratum of her existence. If she possesses goodness, it is because human existence is good.

A Review of Research on Direct-Care Staff Data Collection Regarding the Severity and Function of Challenging Behavior in Individuals with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Madsen, Emily K.; Peck, Janelle A.; Valdovinos, Maria G.

2016-01-01

In working with individuals with intellectual and developmental disabilities (IDDs), it is direct care staff who are often required to collect data on individuals' behavior which is used as the basis for implementation of empirically based approaches for intervention and treatment. Due to limited resources, indirect and descriptive measures of…

Access to Services, Quality of Care, and Family Impact for Children with Autism, Other Developmental Disabilities, and Other Mental Health Conditions

ERIC Educational Resources Information Center

Vohra, Rini; Madhavan, Suresh; Sambamoorthi, Usha; St Peter, Claire

2014-01-01

This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3-17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009-2010 National Survey of Children with…

Have Racial and Ethnic Disparities in the Quality of Health Care Relationships Changed for Children with Developmental Disabilities and ASD?

ERIC Educational Resources Information Center

Magaña, Sandra; Parish, Susan L.; Son, Esther

2015-01-01

The aim of this study was to determine if racial and ethnic disparities in the quality of provider interaction have changed between 2006 and 2010 for children with developmental disabilities and autism spectrum disorders (ASD). Data from the 2005/2006 and 2009/2010 National Survey of Children With Special Health Care Needs were analyzed. Results…

Language Development in the Years before School: A Comparison of Developmental Assets in Home and Child Care Settings

ERIC Educational Resources Information Center

Weigel, Daniel J.; Lowman, Jennifer L.; Martin, Sally S.

2007-01-01

In this paper, we examine the influences of two settings--home and child care--on the development of children's speaking and listening skills before they begin formal schooling. We propose that a developmental assets approach, one that focuses on strengths of these settings, can help our understanding of the development of young children's…

Perceived Needs of Developmentally Disabled Skilled Care Facility and Intermediate Care Facility Residents as Compared to Their Non-institutionalized Peers.

ERIC Educational Resources Information Center

Loughman, Sharon

The Center for Independent Living of Greater Bridgeport and its operating agencies conducted a survey of 32 people, the majority of whom were developmentally disabled and residents of institutional or community settings, in both rural and urban areas. The aim of the survey was to determine the perceived needs and levels of independence experienced…

Autism Comes to the Hospital: The Experiences of Patients with Autism Spectrum Disorder, Their Parents and Health-Care Providers at Two Canadian Paediatric Hospitals

ERIC Educational Resources Information Center

Muskat, Barbara; Burnham Riosa, Priscilla; Nicholas, David B.; Roberts, Wendy; Stoddart, Kevin P.; Zwaigenbaum, Lonnie

2015-01-01

Youth with autism spectrum disorder are a vulnerable, often poorly understood patient group, who may experience periodic and chronic health challenges, in addition to their primary developmental social and communication problems. Developmental and behavioural challenges can complicate management of acute health-care needs. To date, there is an…

Concurrent Medical Conditions and Health Care Use and Needs among Children with Learning and Behavioral Developmental Disabilities, National Health Interview Survey, 2006-2010

ERIC Educational Resources Information Center

Schieve, Laura A.; Gonzalez, Vanessa; Boulet, Sheree L.; Visser, Susanna N.; Rice, Catherine E.; Braun, Kim Van Naarden; Boyle, Coleen A.

2012-01-01

Studies document various associated health risks for children with developmental disabilities (DDs). Further study is needed by disability type. Using the 2006-2010 National Health Interview Surveys, we assessed the prevalence of numerous medical conditions (e.g. asthma, frequent diarrhea/colitis, seizures), health care use measures (e.g. seeing a…

A review of Canadian health care and cancer care systems.

PubMed

Sutcliffe, Simon B

2011-05-15

Canada is a westernized, market-economy nation with a publicly funded health care and cancer control system and has health indices reflective of a high-resource economy. Provision of health services is in accord with the Canada Health Act and is implemented through federal, provincial, and territorial relations wherein federal funding partly provides support for the provincial/territorial delivery of health services. Cancer services are provided within the acute health care system with dedicated entities existing in parallel in most provinces to provide services specific to the diagnosis, treatment, and support of cancer patients. Interprovincial and territorial collaboration to enhance and facilitate optimal cancer system performance is enabled through the Canadian Partnership Against Cancer (the Canadian national cancer control initiative). Adolescent and young adult (AYA) cancer patients use both the pediatric and adult cancer systems. There is recognition, however, that although AYA patients are numerically a small portion of all cancer patients, the negative personal, societal, and socioeconomic impacts of potential years of life lost are substantial and can be lessened through attention to awareness, education, redesign of care and care pathways, quality of life, developmental aspects related to adolescent-teen-adult transitions, continuity of care, and surveillance across pediatric and adult settings. Appropriate solutions need to be established within the framework of the Canadian Health Service by innovative rethinking and realignment of system capacity and performance to the special needs of AYA cancer patients. © 2011 American Cancer Society

Predictors of Future Caregiving by Adult Siblings of Individuals with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Burke, Meghan M.; Taylor, Julie Lounds; Urbano, Richard; Hodapp, Robert M.

2012-01-01

With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving…

Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care.

PubMed

Burström, Åsa; Bratt, Ewa-Lena; Frenckner, Björn; Nisell, Margret; Hanséus, Katarina; Rydberg, Annika; Öjmyr-Joelsson, Maria

2017-07-01

The aim of the study was to explore what adolescents with congenital heart disease (CHD) view as important in the preparation for the transfer to adult care. We performed interviews in four focus groups with adolescents (14-18 years old) at four university hospitals in Sweden. Data was analysed using qualitative content analysis. The analysis revealed one main category; Becoming a manager of the condition and four subcategories; Sufficient knowledge about the health, Be a participant in the care, Parental support, and Communicate with others about the health. The adolescents' ages differentiated the discussion in the groups. The older adolescents seemed to have more interest in transition planning, information and transfer. The younger described more frustrations about communication and handling the disease. To become a manager of the CHD in daily life, the adolescents want disease specific knowledge, which should be communicated in a developmentally appropriate way. Adolescents want to participate and be involved in the transition process. They need support and guidance in how to communicate their CHD. Parental support is fundamental but it change over time. Moreover, peer-support is becoming more significant during the transition process. What is Known: • Transition during adolescence and transfer to adult care for adolescents with CHD is complex, and there is a shift in roles. • Adolescents often have poor knowledge and understanding about their heart condition and the consequences. What is New: • Adolescents call for disease specific information regarding health issues of importance for them in daily life. • Communicating the disease with other is a challenge- peer support from other adolescents with CHD could be a facilitator.

Health Care, Family, and Community Factors Associated with Mental, Behavioral, and Developmental Disorders in Early Childhood - United States, 2011-2012.

PubMed

Bitsko, Rebecca H; Holbrook, Joseph R; Robinson, Lara R; Kaminski, Jennifer W; Ghandour, Reem; Smith, Camille; Peacock, Georgina

2016-03-11

Sociodemographic, health care, family, and community attributes have been associated with increased risk for mental, behavioral, and developmental disorders (MBDDs) in children (1,2). For example, poverty has been shown to have adverse effects on cognitive, socio-emotional, and physical development (1). A safe place to play is needed for gross motor development, and accessible health care is needed for preventive and illness health care (3). Positive parenting and quality preschool interventions have been shown to be associated with prosocial skills, better educational outcomes, and fewer health risk behaviors over time (2). Protective factors for MBDDs are often shared (4) and conditions often co-occur; therefore, CDC considered MBDDs together to facilitate the identification of factors that could inform collaborative, multidisciplinary prevention strategies. To identify specific factors associated with MBDDs among U.S. children aged 2-8 years, parent-reported data from the most recent (2011-2012) National Survey of Children's Health (NSCH) were analyzed. Factors associated with having any MBDD included inadequate insurance, lacking a medical home, fair or poor parental mental health, difficulties getting by on the family's income, employment difficulties because of child care issues, living in a neighborhood lacking support, living in a neighborhood lacking amenities (e.g., sidewalks, park, recreation center, and library), and living in a neighborhood in poor condition. In a multivariate analysis, fair or poor parental mental health and lacking a medical home were significantly associated with having an MBDD. There was significant variation in the prevalence of these and the other factors by state, suggesting that programs and policies might use collaborative efforts to focus on specific factors. Addressing identified factors might prevent the onset of MBDDs and improve outcomes among children who have one or more of these disorders.

Relationship Themes Present between Parents and Children in Recovery Homes

PubMed Central

Isler, Brandon; Mineau, Megan; Hunter, Bronwyn; Callahan, Sarah; Gelfman, Noah; Bustos, Yvita; Dovale, Isabel; Peterson, Andrew; Jason, Leonard A.

2017-01-01

Approximately 12.5% of children have a parent with a substance use disorder. These children are likely to experience developmental delays, especially if they are placed into foster care. Oxford House recovery homes provide a useful setting that allows children to live with their parents after treatment for substance use. A sample of parents and their children who lived in Oxford Houses were interviewed, using mixed methods, and the outcomes suggest that Oxford Houses may provide a stable and supportive setting for parents and their children. PMID:28839346

Screen time and young children: Promoting health and development in a digital world.

PubMed

2017-11-01

The digital landscape is evolving more quickly than research on the effects of screen media on the development, learning and family life of young children. This statement examines the potential benefits and risks of screen media in children younger than 5 years, focusing on developmental, psychosocial and physical health. Evidence-based guidance to optimize and support children's early media experiences involves four principles: minimizing, mitigating, mindfully using and modelling healthy use of screens. Knowing how young children learn and develop informs best practice strategies for health care providers.

Optimizing perioperative care for children and adolescents with challenging behaviors.

PubMed

Balakas, Karen; Gallaher, Carol S; Tilley, Carra

2015-01-01

Pediatric perioperative nurses care for a wide variety of children and adolescents, some of whom have special developmental or behavioral needs. Providing care for this vulnerable population can be challenging because they may not express their level of pain or anxiety through behaviors commonly observed in typically developing children. This quality improvement project was conducted to enhance perioperative care delivered to children with challenging behaviors and to their families. A screening tool to individualize the plan of care was developed to identify specific behaviors, triggers, and communication patterns of these children prior to hospitalization. Interventions were identified to address these behaviors that could be used by nurses, child life specialists, and occupational therapists. Partnering with parents and other members of the interprofessional healthcare team has resulted in best practice care planning for these children, ensuring a much more successful perioperative experience for patients and families. Findings from parent surveys demonstrate that by using the tool, nurses and other team members are able to minimize stressors and implement interventions specific to the child. As a result, the adaptive care planning tool has expanded beyond the perioperative area and is now being used by direct care nurses, support staff, nurse practitioners, and physicians across the organization.

Innovative methods and tools for professionals working in supported living services for intellectually disabled persons.

PubMed

Gruiz, Katalin

2015-01-01

Autonomy of mid-seriously and seriously intellectually disabled persons is encouraged both by legislations on human rights and the modern social care and services. The process leading to the maximum possible autonomy is illustrated by a developmental spiral in our model. Specialty of the development is that the personal educational projects are realized during everyday activities. The process requires conscious professionals with an empowering and motivating attitude, with adult relationship to the intellectually disabled persons and versatile skills and tools. In this educational relationship the social professional and the supported person are equal partners moving together along the spiral of human development. An innovative tool-battery has been developed aiding support-staff in the 'pedagogical' task embedded into everyday social services. The tool-battery and its first application in supported living services of the Hungarian Down Foundation are introduced in this paper.

Neuroendocrine Regulation of Maternal Behavior

PubMed Central

Bridges, Robert S.

2015-01-01

The expression of maternal behavior in mammals is regulated by the developmental and experiential events over a female’s lifetime. In this review the relationships between the endocrine and neural systems that play key roles in these developmental and experiential that affect both the establishment and maintenance of maternal care are presented. The involvement of the hormones estrogen, progesterone, and lactogens are discussed in the context of ligand, receptor, and gene activity in rodents and to a lesser extent in higher mammals. The roles of neuroendocrine factors, including oxytocin, vasopressin, classical neurotransmitters, and other neural gene products that regulate aspects of maternal care are set forth, and the interactions of hormones with central nervous system mediators of maternal behavior are discussed. The impact of prior developmental factors, including epigenetic events, and maternal experience on subsequent maternal care are assessed over the course of the female’s lifespan. It is proposed that common neuroendocrine mechanisms underlie the regulation of maternal care in mammals. PMID:25500107

Neuroendocrine regulation of maternal behavior.

PubMed

Bridges, Robert S

2015-01-01

The expression of maternal behavior in mammals is regulated by the developmental and experiential events over a female's lifetime. In this review the relationships between the endocrine and neural systems that play key roles in these developmental and experiential processes that affect both the establishment and maintenance of maternal care are presented. The involvement of the hormones estrogen, progesterone, and lactogens are discussed in the context of ligand, receptor, and gene activity in rodents and to a lesser extent in higher mammals. The roles of neuroendocrine factors, including oxytocin, vasopressin, classical neurotransmitters, and other neural gene products that regulate aspects of maternal care are set forth, and the interactions of hormones with central nervous system mediators of maternal behavior are discussed. The impact of prior developmental factors, including epigenetic events, and maternal experience on subsequent maternal care are assessed over the course of the female's lifespan. It is proposed that common neuroendocrine mechanisms underlie the regulation of maternal care in mammals. Copyright © 2014 Elsevier Inc. All rights reserved.

Improving student dentist competencies and perception of difficulty in delivering care to children with developmental disabilities using a virtual patient module.

PubMed

Kleinert, Harold L; Sanders, Carla; Mink, John; Nash, David; Johnson, Jeff; Boyd, Sara; Challman, Sandra

2007-02-01

An interactive, multimedia, virtual patient module was designed and developed on compact disc (CD-ROM) to address the need for student dentists to increase their competence and decrease their perception of difficulty in caring for children with developmental disabilities. A development team consisting of pediatric dentistry faculty members, parents of children with developmental disabilities, an individual with a developmental disability, and educational specialists developed an interactive virtual patient case. The case involved a ten-year-old child with Down syndrome presenting with a painful tooth. Student dentists were required to make decisions regarding proper interactions with the child, as well as appropriate clinical procedures throughout the case. Differences in perceived difficulty level and knowledge change were measured, as well as the student dentists' overall satisfaction with the learning experience. Significant results were obtained in both perceived difficulty level and knowledge-based measures for student dentists. Participants reported overall satisfaction with the modules. Preparing student dentists to provide sensitive and competent care for children with developmental disabilities is a critical need within dentistry. This study demonstrated that an interactive, multimedia (CD-ROM), virtual patient learning module for student dentists is potentially an effective tool in meeting this need.

Supporting People with Intellectual and Developmental Disabilities to Participate in Their Communities through Support Staff Pilot Intervention

ERIC Educational Resources Information Center

Zakrajsek, Andrea Gossett; Hammel, Joy; Scazzero, Joseph A.

2014-01-01

Background: Increasingly, people with intellectual and developmental disabilities (I/DD) are supported to participate in least-restricted settings in the community. However, little is known about desired community participation choice and control of people with I/DD, nor effective strategies to support full participation. Furthermore, service…

Preparing childhood cancer survivors for transition to adult care: The young adult perspective.

PubMed

Frederick, Natasha N; Bober, Sharon L; Berwick, Lexie; Tower, Mary; Kenney, Lisa B

2017-10-01

Childhood cancer survivors (CCSs) remain at risk for developing treatment-associated health conditions as they age; however, many do not obtain recommended follow-up, putting them at unnecessary risk for morbidity. Educational interventions targeted at providing survivors with the knowledge and skills necessary for healthcare independence might improve adherence and outcomes as they transition care to the adult medical system. To identify informational needs, educational preferences, and support that young adult CCSs perceive as beneficial for transition from pediatric to adult medical care. Sixteen young adult CCSs (ages 22-39 years) who have transitioned to adult care participated in focus groups led by a trained moderator and analyzed using a thematic analysis approach. Four major themes emerged: (1) education preferences-pediatric oncology provider as the primary source of information and guidance, enhanced by other formats, and early and ongoing engagement in education; (2) family role in transition-desire for independence and acknowledgement of need for ongoing parental support; (3) expectations for adult providers, such as close relationships, open communication, and care coordination; and (4) knowledge deficits regarding disease/treatment history, risk for long-term complications, and navigation of the adult medical system. Transition education as described by young adult CCSs should be a developmentally appropriate process beginning in early adolescents, primarily administered by pediatric oncology providers, and delivered in multiple formats. While healthcare independence is a goal for young adult CCSs, all stakeholders must recognize that families and providers continue to have an important role supporting survivors with transition logistics and medical decision-making. © 2017 Wiley Periodicals, Inc.

The development of specialized palliative care in the community: A qualitative study of the evolution of 15 teams.

PubMed

Seow, Hsien; Bainbridge, Daryl

2018-05-01

Interprofessional specialized palliative care teams at home improve patient outcomes, reduce healthcare costs, and support many patients to die at home. However, practical details about how to develop home-based teams in different regions and health systems are scarce. To examine how a variety of home-based specialized palliative care teams created and grew their team over time and to identify critical steps in their evolution. A qualitative study was designed based on a grounded theory approach, using semi-structured interviews and other documentation. In all, 15 specialized palliative care teams from Ontario, Canada, representing rural and urban areas. Data were collected from core members of the teams, including nurses, physicians, personal support workers, spiritual counselors, and administrators. In all, 122 individuals where interviewed, ranging from 4 to 10 per team. The analysis revealed four stages in team evolution: Inception, Start-up (n = 4 teams), Growth (n = 5), and Mature (n = 6). In the Inception stage, a champion provider was required to leverage existing resources to form the team. Start-up teams were testing and adjusting care processes to solidify their presence in the community. Growth teams had core expertise, relationships with fellow providers, and 24/7 support. Mature teams were fully integrated in the community, but still engaged in continuous quality improvement. Understanding the developmental stages of teams can help to inform the progress of other community-based teams. Appropriate outcome measures at each stage are also critical for team motivation and steady progress.

A developmental perspective on congenital muscular torticollis: a critical appraisal of the evidence.

PubMed

Tessmer, Angela; Mooney, Paula; Pelland, Lucie

2010-01-01

The aims of this review were to (1) identify and evaluate research evidence regarding the developmental outcomes of infants with congenital muscular torticollis (CMT) and (2) critically appraise and compare the outcomes of interventions targeting neck muscle extensibility and strength with those considering neck muscle function within the broader context of global infant development. An association between CMT and early developmental delay is supported by levels 3B, 4, and 5 evidence; no evidence was found of longer-term influences of CMT on the development of perceptual, cognitive, and motor skills. The effectiveness of passive manual stretching is supported by levels 2A, 3B, 4, and 5 evidence; no clear evidence was found of the effectiveness of developmentally supportive interventions. Controlled studies are needed to clarify the developmental consequences of CMT.

The effectiveness of a standardised positioning tool and bedside education on the developmental positioning proficiency of NICU nurses.

PubMed

Spilker, Arlene; Hill, Constance; Rosenblum, Ruth

2016-08-01

In order to improve the developmental proficiency of neonatal intensive care unit nurses, a standardised infant positioning assessment tool and a bedside education programme were introduced to the registered nurses in a 46 bed level III neonatal intensive care unit in the western United States. A developmental positioning team collected pre-intervention positioning scores on 54 preterm infants. This was followed by a survey of the registered nurses beliefs and attitudes, the introduction of the standardised assessment tool and an informal education programme. Post-intervention positioning scores were collected on 55 preterm infants, and analysis of the data indicated there was a statistically significant change in mean positioning scores. Additionally, the registered nurses identified several barriers to the implementation of developmental positioning. This research indicates the use of a standardised infant positioning assessment tool and bedside education may be useful strategies for improving the developmental positioning proficiency of NICU nurses. Copyright © 2016. Published by Elsevier Ltd.

The influence of self-esteem and social support on the relationship between stigma and depressive symptomology in parents caring for children with intellectual disabilities.

PubMed

Cantwell, J; Muldoon, O; Gallagher, S

2015-10-01

This study explored the synergistic relationship between stigma, self-esteem and social support, as predictors of depressive symptomology in parents of children with disabilities (e.g. Autism and Down syndrome). One hundred and seventy-three parents (115 parents of children with disabilities and 58 control parents) completed measures of perceived stigma, self-esteem, social support and depressive symptoms. Parents of children with disabilities reported more depressive symptomology; additionally, stigma, self-esteem and social support were associated with depressive symptomology. Moreover, the association between stigma and depressive symptomology was mediated by self-esteem, i.e. parents who reported higher stigma were lower on self-esteem and more depressed. Further, this path varied as a function of emotional support. Results highlight the need for tailored interventions that offer parents effective strategies in dealing with stigma through social support and self-esteem. © 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Emergency medical systems in low- and middle-income countries: recommendations for action.

PubMed Central

Kobusingye, Olive C.; Hyder, Adnan A.; Bishai, David; Hicks, Eduardo Romero; Mock, Charles; Joshipura, Manjul

2005-01-01

Emergency medical care is not a luxury for rich countries or rich individuals in poor countries. This paper makes the point that emergency care can make an important contribution to reducing avoidable death and disability in low- and middle-income countries. But emergency care needs to be planned well and supported at all levels--at the national, provincial and community levels--and take into account the entire spectrum of care, from the occurrence of an acute medical event in the community to the provision of appropriate care at the hospital. The mix of personnel, materials, and health-system infrastructure can be tailored to optimize the provision of emergency care in settings with different levels of resource availability. The misconception that emergency care cannot be cost effective in low-income settings is demonstrably inaccurate. Emergencies occur everywhere, and each day they consume resources regardless of whether there are systems capable of achieving good outcomes. With better planning, the ongoing costs of emergency care can result in better outcomes and better cost-effectiveness. Every country and community can and should provide emergency care regardless of their place in the ratings of developmental indices. We make the case for universal access to emergency care and lay out a research agenda to fill the gaps in knowledge in emergency care. PMID:16184282

Predictors of receiving therapy among very low birth weight 2-year olds eligible for Part C early intervention in Wisconsin

PubMed Central

2013-01-01

Background The Individuals with Disabilities Education Act (Part C) authorizes states to establish systems to provide early intervention services (e.g., therapy) for children at risk, with the incentive of federal financial support. This study examines family and neighborhood characteristics associated with currently utilizing physical, occupational, or speech therapy among very low birthweight (VLBW) 2-year-old children who meet Wisconsin eligibility requirements for early intervention services (EI) due to developmental delay. Methods This cross-sectional analysis used data from the Newborn Lung Project, a regional cohort study of VLBW infants hospitalized in Wisconsin’s newborn intensive care units during 2003–2004. We included the 176 children who were age two at follow-up, and met Wisconsin state eligibility requirements for EI based on developmental delay. Exact logistic regression was used to describe child and neighborhood socio-demographic correlates of parent-reported receipt of therapy. Results Among VLBW children with developmental delay, currently utilizing therapy was higher among children with Medicaid (aOR = 5.3, 95% CI: 1.3, 28.3) and concomitant developmental disability (aOR = 5.2, 95% CI: 2.1, 13.3) and lower for those living in a socially more disadvantaged neighborhood (aOR=0.48, 95% CI: 0.21, 0.98, per tertile). Conclusions Among a sample of VLBW 2-year olds with developmental delays who are EI-eligible in WI, 4 out of 5 were currently receiving therapy, per parent report. Participation in Medicaid positively influences therapy utilization. Children with developmental difficulties who live in socially disadvantaged neighborhoods are at highest risk for not receiving therapy. PMID:23845161

Wound care in the neonatal intensive care unit.

PubMed

Fox, Miriam D

2011-01-01

The skin is a vital organ with key protective functions. Infants in the NICU are at risk for skin injury because of developmental immaturity and intensive care treatments. When skin injury occurs, the neonatal nurse is challenged to provide wound care to optimize functional and cosmetic healing. Optimal wound care requires basic knowledge of the mechanisms of injury, physiology of wound healing, host factors affecting wound healing, and wound assessment. This knowledge provides the basis for determining appropriate wound treatment, including dressing selection. Attention to pain issues associated with wound care is difficult because of the infant's developmental stage, but is essential because of the potentially negative life-long impact of pain. The premature infant's propensity for skin stripping limits the selection of appropriate dressing, as does the paucity of research examining wound care products in this population.

Fine motor and self-care milestones for individuals with Down syndrome using a Retrospective Chart Review.

PubMed

Frank, K; Esbensen, A J

2015-08-01

Developmental milestone markers for fine motor and self-care skills among children with Down syndrome (DS) are either minimal, anecdotal or out-of date. Our goal was to produce normative expectations for the development of fine motor and self-care milestones specific to children with DS. A cross-sectional retrospective chart review was completed on 274 children with DS seen at a specialty clinic that ranged in age from 4 months to 18 years. Specific skills were assessed at occupational therapy assessments as either present or absent, including fine motor, handwriting, scissor usage, self-feeding and clothing management. Fine motor milestones describing when 10-30% ('early achievers') and 75-95% ('representative achievement') of children with DS had mastered each skill were developed based upon descriptive review. As the fine motor and self-care skills advanced in complexity, the range of ages for documented skill acquisition was observed to increase. Age ranges for the mastery of fine motor developmental milestones for early and representative achievement were developed based upon descriptive analysis of cross-sectional retrospective clinical chart reviews. That the age range for mastering fine motor and self-care skills broadens as children with DS get older is in agreement with what is identified in the DS behavioural phenotype with regard to variable motor skills overall. These fine motor and self-care developmental milestone markers contribute to the field by informing parents, caregivers and healthcare providers of potential fine motor and self-care outcomes and describing normative development for children with DS. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Dental care among young adults with intellectual disability

PubMed Central

Kancherla, Vijaya; Van Naarden Braun, Kim; Yeargin-Allsopp, Marshalyn

2015-01-01

Dental care among young adults with intellectual disability (ID) is poorly documented and largely unmet. By using population-based data from the Metropolitan Atlanta Developmental Disabilities Follow-Up Study, we assessed factors associated with at least one or two dental visits per year among young adults with and without ID. Significantly fewer young adults with ID (45%) visited a dentist at least once per year, compared with those without ID (58%). ID severity and the presence of co-occurring developmental disabilities predicted dental care use. Sociodemographics, daily functioning, societal participation, dental services, and dental health factors were examined as predictors of dental care frequency. Our findings can help focus efforts toward improving the frequency of dental care visits among young adults with ID. PMID:23501584

Leveraging the Skills of Nurses and the Power of Language Nutrition to Ensure a Better Future for Children.

PubMed

Darcy Mahoney, Ashley; Zauche, Lauren Head; Hallowell, Sunny; Weldon, Arianne; Stapel-Wax, Jennifer

2017-02-01

Early language exposure is critical for language acquisition and significantly influences a child's literacy skills. However, preterm infants may experience language deprivation in the neonatal intensive care unit. Nurses are vital to helping parents understand their critical role in early language development. To discuss the impact of language-rich interactions and interventions that promote early language exposure, or Language Nutrition, by parents and caregivers on the long-term developmental, language, and educational outcomes of high-risk infants. A literature search was conducted using PubMed and Web of Science to identify articles that examined the influence of language interactions with high-risk infants on developmental outcomes. Recent campaigns touting the importance of early language exposure were identified through the Bridging the Word Gap Research Network. Increasing preterm infants' exposure to Language Nutrition improves their language development, promotes parent-infant attachment, and decreases parent stress. In addition, it may result in greater neuroplasticity and volume of the auditory cortex. Several campaigns have been developed to increase children's access to Language Nutrition and can be implemented into everyday pediatric and neonatal care. Pediatric, neonatal nurses and advanced practice nurses are uniquely positioned to play a transformational role in high-risk infants' developmental trajectory by educating parents about the importance of Language Nutrition and supporting parents as they engage with their infant. Studies investigating the population-level impact of interventions aimed at increasing infants' access to Language Nutrition as well as studies identifying effective ways to communicate messages about Language Nutrition are warranted.

Adverse childhood experiences and psychosocial well-being of women who were in foster care as children.

PubMed

Bruskas, Delilah; Tessin, Dale H

2013-01-01

Research has shown that many children in foster care later have psychosocial problems as adults; this is often attributed to cumulative adversities and a lack of supportive caregivers. The risk factors associated with foster care, such as maternal separation and multiple placements, often counteract many protective factors that can ameliorate the effects of childhood adversities. This study assessed the relationship between adverse childhood experiences (ACEs) and psychosocial well-being in women who were in foster care as children. A total of 101 women aged 18-71 years (mean, 36.83 [12.95] years) completed an anonymous online survey based on the 10-item ACE Questionnaire, the Sense of Coherence questionnaire, and the General Health Questionnaire. More than 56% of respondents were identified as experiencing current psychological distress. Sense of coherence scores (mean, 54.26 [15.35]) showed a significant inverse association with both General Health Questionnaire (mean, 14.83 [5.88]) and ACE (mean, 5.68 [2.90]) scores (r = -0.64 and -0.31, respectively) and 97% reported at least 1 ACE, 70% reported ≥ 5 and 33% reported ≥ 8. Linear regressions indicated that ACEs reported to occur before foster care were associated with lower levels of sense of coherence (8%) and higher levels of psychological distress (6%). Physical neglect and living in a dysfunctional household (parental loss, maternal abuse, or household member associated with substance abuse or prison) significantly decreased during foster care by 16 and 19 percentage points, respectively. Rates of emotional and physical abuse did not change. The number of ACEs was associated with the level of psychological distress. Our findings suggest that children entering the foster care system are already vulnerable and at risk of experiencing ACEs during foster care and psychological distress during adulthood. Measures implemented to protect children must not cause more harm than good. Social services that preserve and strengthen the family unit and reduce the number of ACEs both before and during foster care are recommended. Social workers and clinicians who are trained to address and manage the unique developmental needs of children in foster care may help reduce the effects of ACEs and optimize developmental health.

Adolescents with perinatally acquired HIV: emerging behavioral and health needs for long-term survivors.

PubMed

Koenig, Linda J; Nesheim, Steven; Abramowitz, Susan

2011-10-01

Because of widespread availability of highly active antiretroviral therapy in the developed world, a large proportion of children with perinatally acquired HIV have survived to adolescence and young adulthood. Although their survival is remarkable, many now experience the long-term effects of HIV infection and its treatment. Further, as these youths have entered adolescence, more is known about the impact of normative developmental transitions on health maintenance behaviors. Although perinatally infected adolescents are healthier than they were a decade or more ago, they are significantly experienced with antiretroviral therapy, with increased virological resistance and other consequences of extended antiretroviral use. Three behavioral health challenges have been documented in the first cohort of long-term survivors: decreased medication adherence, sexual debut and accompanying pregnancy and transmission risk, and mental health problems. These issues are consistent with a developmental press for autonomy, mature sexual relationships and future planning, but must be carefully managed to preserve health. Adolescents with perinatally acquired HIV require coordinated multidisciplinary support services - including adherence support, reproductive health counseling addressing both pregnancy planning and disease transmission, and mental health and educational/vocational planning - so that they can fully benefit from treatment advances. (C) 2011 Lippincott Williams & Wilkins, Inc.

Timing of High-Quality Child Care and Cognitive, Language, and Preacademic Development

PubMed Central

Li, Weilin; Farkas, George; Duncan, Greg J.; Burchinal, Margaret R.; Vandell, Deborah Lowe

2014-01-01

The effects of high- versus low-quality child care during 2 developmental periods (infant–toddlerhood and preschool) were examined using data from the National Institute of Child Health and Human Development Study of Early Child Care. Propensity score matching was used to account for differences in families who used different combinations of child care quality during the 2 developmental periods. Findings indicated that cognitive, language, and preacademic skills prior to school entry were highest among children who experienced high-quality care in both the infant–toddler and preschool periods, somewhat lower among children who experienced high-quality child care during only 1 of these periods, and lowest among children who experienced low-quality care during both periods. Irrespective of the care received during infancy–toddlerhood, high-quality preschool care was related to better language and preacademic outcomes at the end of the preschool period; high-quality infant–toddler care, irrespective of preschool care, was related to better memory skills at the end of the preschool period. PMID:23127299

[Short- and long-term effects of parent training programmes of children with developmental disabilities].

PubMed

Jascenoka, Julia; Petermann, Ulrike; Petermann, Franz; Rissling, Julia-Katharina; Springer, Stephan

2013-01-01

Due to the higher care needs of their children, parents of children with developmental disabilities are often burdened. An increased degree of stress correlates with dysfunctional parenting behaviour and a low sense of competence. Parent involvement in treatment implementation is essential so that parents can support the development of their children long-ranging and positively. Parenting training programmes are an appropriate method to reduce child behaviou problems. The effectiveness of two parenting training programmes is presented: Intervention A involves weekly training courses containing information about a normative child development. Furthermore all parents are given the possibility to take part in therapy sessions. Intervention B is modular and high structured. Parents are taught in small groups and receive information about the different areas of development and how to increase their parentin behaviour. The outcomes of a randomized clinical trial of the two intervention concepts are presented. 34 parents with children (between 54 and 77 months) with developmental dis abilities participated per group. Particularly, intervention B was associated with a reduction of dysfunctional parenting behaviour and fewer child behaviour problems; a decreased parental stress level was observed for both interventions similarly.

Direct Support Workforce Development.

ERIC Educational Resources Information Center

Impact, 1998

1998-01-01

The fourteen brief articles in this theme issue all examine challenges in the development of direct support staff working with people who have developmental disabilities. The articles also include the views of direct support providers and people with developmental disabilities themselves, as well as examples of strategies used by provider agencies…

The Direct Support Workforce in Community Supports to Individuals with Developmental Disabilities: Issues, Implications, and Promising Practices

ERIC Educational Resources Information Center

Hewitt, Amy; Larson, Sheryl

2007-01-01

Difficulties in finding, keeping, and ensuring the competence of the direct support workforce in community developmental disability services has long been a challenge for individuals, families, providers, and policy makers. Direct support staff recruitment, retention, and competence are widely reported as one of the most significant barriers to…

Position of the American Dietetic Association: Providing nutrition services for people with developmental disabilities and special health care needs.

PubMed

Van Riper, Cynthia L; Wallace, Lee Shelly

2010-02-01

It is the position of the American Dietetic Association that nutrition services provided by registered dietitians (RDs) and dietetic technicians, registered (DTRs), are essential components of comprehensive care for all people with developmental disabilities and special health care needs. Nutrition services should be provided throughout life in a manner that is interdisciplinary, family-centered, community-based, and culturally competent. People with developmental disabilities and special health care needs frequently have nutrition concerns, including growth alterations (failure to thrive, obesity, or growth retardation), metabolic disorders, poor feeding skills, medication-nutrient interactions, and sometimes partial or total dependence on enteral or parenteral nutrition. Individuals with special needs are also more likely to develop comorbid conditions such as obesity or endocrine disorders that require nutrition interventions. Poor health habits, limited access to services, and long-term use of multiple medications are considered health risk factors. Health maintenance and avoidance of complications can be promoted by timely and cost-effective nutrition interventions. Public policy for individuals with special needs has evolved over time, resulting in a transition from institutional facilities and programs to community living. The expansion of public access to technology and health information on the Internet challenges RDs and DTRs to provide accurate scientific information for those with developmental disabilities and special health care needs. Nationally credentialed RDs and DTRs are best prepared to provide appropriate nutrition information for wellness and quality of life.

No change in developmental outcome with incubator covers and nesting for very preterm infants in a randomised controlled trial.

PubMed

Maguire, C M; Walther, F J; van Zwieten, P H T; Le Cessie, S; Wit, J M; Veen, S

2009-03-01

To investigate in a randomised controlled trial the effect of basic elements of developmental care (incubator covers and positioning aids) on growth and neurodevelopment in infants born at < 32 weeks. Infants were randomised within 48 h of birth to a developmental care (DC) or standard care (C) group. Outcome measures at 1 and 2 years corrected age were growth, standardised neurological examinations, and mental (MDI) and psychomotor (PDI) development (Dutch version of the Bayley Scales of Infant Development II). 192 infants were recruited (DC = 98; C = 94). Thirteen infants (DC = 7, C = 6) were excluded because they were admitted for <5 days or died within the first 5 days. In total, 179 infants met the inclusion criteria. In-hospital mortality was 12/91 (13.2%) in the DC group and 8/88 (9.1%) in the C group. Assessments were carried out on 147 children (DC = 74, C = 73) at 1 year and 142 children (DC = 72, C = 70) at 2 years. No significant difference in growth, neurological outcomes or MDI was found. A positive trend in PDI at 1 year (p = 0.05) did not continue once the children reached 2 years. There was no difference found when neurological and developmental scores were combined. Basic developmental care has no positive effect on neurological and mental development or growth at 1 and 2 years of age in infants born at <32 weeks. A positive effect on psychomotor development at 1 year did not continue at 2 years of age.

Children in Foster Care and the Development of Favorable Outcomes

PubMed Central

Fisher, Philip A.

2011-01-01

Young foster children have invariably faced a variety of risks that are strongly linked to long-term deficits in functioning across multiple developmental domains. Despite these risks, however, some children demonstrate more favorable outcomes and exhibit adaptation and the development of assets. In the present study, the relationship of early childhood factors (e.g., maltreatment history, placement history, parenting practices, environmental stress, developmental status, and attachment behavior) to the development of favorable outcomes in middle childhood were examined in a sample of foster children who had been in foster care in preschool (N = 35). Favorable outcomes were defined as demonstrations of emotion regulation and school adjustment in during middle childhood. Developmental status (particularly attention and executive functioning) and a lack of environmental stress during early childhood foster care experiences had a significant positive relationship with the development of emotion regulation and school adjustment in middle childhood. PMID:21987598

Implementing clinical governance in English primary care groups/trusts: reconciling quality improvement and quality assurance.

PubMed

Campbell, S M; Sheaff, R; Sibbald, B; Marshall, M N; Pickard, S; Gask, L; Halliwell, S; Rogers, A; Roland, M O

2002-03-01

To investigate the concept of clinical governance being advocated by primary care groups/trusts (PCG/Ts), approaches being used to implement clinical governance, and potential barriers to its successful implementation in primary care. Qualitative case studies using semi-structured interviews and documentation review. Twelve purposively sampled PCG/Ts in England. Fifty senior staff including chief executives, clinical governance leads, mental health leads, and lay board members. Participants' perceptions of the role of clinical governance in PCG/Ts. PCG/Ts recognise that the successful implementation of clinical governance in general practice will require cultural as well as organisational changes, and the support of practices. They are focusing their energies on supporting practices and getting them involved in quality improvement activities. These activities include, but move beyond, conventional approaches to quality assessment (audit, incentives) to incorporate approaches which emphasise corporate and shared learning. PCG/Ts are also engaged in setting up systems for monitoring quality and for dealing with poor performance. Barriers include structural barriers (weak contractual levers to influence general practices), resource barriers (perceived lack of staff or money), and cultural barriers (suspicion by practice staff or problems overcoming the perceived blame culture associated with quality assessment). PCG/Ts are focusing on setting up systems for implementing clinical governance which seek to emphasise developmental and supportive approaches which will engage health professionals. Progress is intentionally incremental but formidable challenges lie ahead, not least reconciling the dual role of supporting practices while monitoring (and dealing with poor) performance.

Developmental origins, behaviour change and the new public health.

PubMed

Barker, M

2015-10-01

A developmental approach to public health focuses attention on better nourishing girls and young women, especially those of low socio-economic status, to improve mothers' nutrition and thereby the health of future generations. There have been significant advances in the behavioural sciences that may allow us to understand and support dietary change in young women and their children in ways that have not previously been possible. This paper describes some of these advances and aims to show how they inform this new approach to public health. The first of these has been to work out what is effective in supporting behaviour change, which has been achieved by careful and detailed analysis of behaviour change techniques used by practitioners in intervention, and of the effectiveness of these in supporting change. There is also a new understanding of the role that social and physical environments play in shaping our behaviours, and that behaviour is influenced by automatic processes and 'habits' as much as by reflective processes and rational decisions. To be maximally effective, interventions therefore have to address both influences on behaviour. An approach developed in Southampton aims to motivate, support and empower young women to make better food choices, but also to change the culture in which those choices are being made. Empowerment is the basis of the new public health. An empowered public demand for better access to better food can go a long way towards improving maternal, infant and family nutrition, and therefore the health of generations to come.

Environmental Dysfunctions, Childhood Maltreatment and Women's Intimate Partner Violence Victimization.

PubMed

Cascio, Maria Lo; Guarnaccia, Cinzia; Infurna, Maria Rita; Mancuso, Laura; Parroco, Anna Maria; Giannone, Francesca

2017-06-01

Childhood maltreatment is considered a crucial explanatory variable for intimate partner violence (IPV) in adulthood. However, a developmental multifactorial model for the etiology of IPV is not shared by researchers yet. This study has investigated the role of a wide range of childhood maltreatments and family and social dysfunctions in predicting IPV; furthermore, it tests a model where childhood maltreatment mediates the relationship between environmental dysfunctions and IPV. The sample included 78 women: IPV (38) and non-IPV (40). The Italian version of the Childhood Experience of Care and Abuse (CECA) Interview was used to assess the presence of adverse childhood experiences. The Revised Conflict Tactics Scale (CTS-2) and the IPV History Interview were used to assess IPV in the last year and lifetime, respectively. The results of a multivariate logistic regression model have indicated that only sexual (odds ratio [OR] = 4.24) and psychological (OR = 3.45) abuse significantly predicted IPV; with regard to association between IPV and environmental dysfunctions, only poor social support (OR = 8.91) significantly predicted IPV. The results of a mediation model have shown that childhood psychological and sexual abuse, in association with each other, partially mediate the relationship between poor social support and IPV. The findings from this study pinpoint poor social support as an important predictor of IPV so far neglected in the literature on the developmental antecedents of IPV. They also support the theoretical assumption according to which dysfunctional environmental variables and types of childhood maltreatment interacting with each other may influence development outcomes.

Developmental origins, behaviour change and the new public health

PubMed Central

Barker, Mary

2016-01-01

A developmental approach to public health focuses attention on better nourishing girls and young women, especially those of low socio-economic status, to improve mothers’ nutrition and thereby the health of future generations. There have been significant advances in the behavioural sciences that may allow us to understand and support dietary change in young women and their children in ways that have not previously been possible. This paper describes some of these advances and aims to show how they inform this new approach to public health. The first of these has been to work out what is effective in supporting behaviour change which has been achieved by careful and detailed analysis of behaviour change techniques used by practitioners in intervention, and of the effectiveness of these in supporting change. There is also a new understanding of the role that social and physical environments play in shaping our behaviours, and that behaviour is influenced by automatic processes and ‘habits’ as much as by reflective processes and rational decisions. To be maximally effective, interventions therefore have to address both influences on behaviour. An approach developed in Southampton aims to motivate, support and empower young women to make better food choices, but also to change the culture in which those choices are being made. Empowerment is the basis of the new public health. An empowered public demand for better access to better food can go a long way towards improving maternal, infant and family nutrition, and therefore the health of generations to come. PMID:26152930

Developing Peer Supports for College Students with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Griffin, Megan M.; Wendel, Kelly F.; Day, Tammy L.; McMillan, Elise D.

2016-01-01

Many postsecondary education programs for students with intellectual and developmental disabilities (IDD) provide support to these students by matching them with peer mentors. Though this practice is widely used, the scholarly literature offers little information about successful peer support models in higher education settings. To address this…

A Quality Framework for Personalised Residential Supports for Adults with Developmental Disabilities

ERIC Educational Resources Information Center

Cocks, E.; Boaden, R.

2011-01-01

Background: The Personalised Residential Supports (PRS) Project provided detailed information about the nature, purposes and outcomes of PRS from the perspectives of key stakeholder groups including people with developmental disabilities, family members and service providers. Although these forms of support have developed over the past two…

Basic nursing care: The most provided, the least evidence based - A discussion paper.

PubMed

Zwakhalen, Sandra M G; Hamers, Jan P H; Metzelthin, Silke F; Ettema, Roelof; Heinen, Maud; de Man-Van Ginkel, Janneke M; Vermeulen, Hester; Huisman-de Waal, Getty; Schuurmans, Marieke J

2018-06-01

To describe and discuss the "Basic Care Revisited" (BCR) research programme, a collaborative initiative that contributes to evidence-based basic nursing care and raises awareness about the importance of basic nursing care activities. While basic nursing care serves nearly all people at some point in their lifetime, it is poorly informed by evidence. There is a need to prioritise and evaluate basic nursing care activities to improve patient outcomes and improve the quality of care. Discussion paper METHOD: The discussion presented in this paper is based on nursing literature and theory and supported by the authors' clinical and research experiences. We present the developmental process and content of a research programme called "Basic Care Revisited" (BCR) as a solution to move forward and improve basic nursing care. To prioritise basic nursing care, we propose a research programme entitled "Basic Care Revisited" that aims to create awareness and expand knowledge on evidence-based basic nursing care by addressing four basic nursing care themes (bathing and dressing, communication, mobility, and nutrition) in different settings. The paper discusses a pathway to create a sustainable and productive research collaborative on basic nursing care and addresses issues to build research capacity. Revaluation of these important nursing activities will not only positively influence patient outcomes, but also have an impact on staff outcomes and organisational outcomes. © 2018 John Wiley & Sons Ltd.

Pregnancy and alcohol use: evidence and recommendations for prenatal care.

PubMed

Bailey, Beth A; Sokol, Robert J

2008-06-01

Pregnancy alcohol consumption has been linked to poor birth outcomes and long-term developmental problems. Despite this, a significant number of women drink during pregnancy. Although most prenatal care providers are asking women about alcohol use, validated screening tools are infrequently employed. Research has demonstrated that currently available screening methods and intervention techniques are effective in identifying and reducing pregnancy drinking. Implementing universal screening and appropriate intervention for pregnancy alcohol use should be a priority for prenatal care providers, as these efforts could substantially improve pregnancy, birth, and longer term developmental outcomes for those affected.

Parent Pathways: Recognition and Responses to Developmental Delays in Young Children: A Mixed-Methods Exploratory Study

ERIC Educational Resources Information Center

Marshall, Jennifer Tess

2013-01-01

The importance of early recognition and intervention for developmental delays is increasingly acknowledged, yet high rates of under-enrollment and 1-3 year delays in entry to the public early intervention system continue. Much research has examined developmental screening in health and child care settings, but less well understood is what prompts…

Health Care Access for Adults With Intellectual and Developmental Disabilities: A Scoping Review.

PubMed

Williamson, Heather J; Contreras, Graciela M; Rodriguez, Erica S; Smith, Jennifer M; Perkins, Elizabeth A

2017-10-01

Adults with intellectual and/or developmental disabilities (IDD) often experience health disparities. To address disparities, Healthy People 2020 includes specific disability and health goals focused on improving health care access. The study's purpose was to review the literature exploring health care access for adults with IDD to identify opportunities for occupational therapy research and practice. A scoping review was completed of articles discussing health care access among adults with IDD in the United States. Thirty-seven articles met the inclusion criteria. Results are framed using the ecology of human performance theory identifying person and environmental issues affecting health care access of adults with IDD. Opportunities exist for occupational therapy to improve participation and health of adults with IDD through engaging in research and practice efforts addressing health care access. Occupational therapy could develop interventions to establish skills and abilities and recommend changes to the health care environment.

A Qualitative Application of the Belsky Model to Explore Early Care and Education Teachers' Mealtime History, Beliefs, and Interactions.

PubMed

Swindle, Taren M; Patterson, Zachary; Boden, Carrie J

Studies on factors associated with nutrition practices in early care and education settings often focus on sociodemographic and programmatic characteristics. This qualitative study adapted and applied Belsky's determinants of parenting model to inform a broader exploration of Early Care and Education Teachers (ECETs) practices. Qualitative cross-sectional study with ECETs. The researchers interviewed ECETs in their communities across a Southern state. Purposive sampling was employed to recruit ECETs (n = 28) from Head Start or state-funded centers serving low-income families. Developmental histories of ECETs regarding food and nutrition, beliefs about child nutrition, and teaching interactions related to food. Qualitative interviews were coded using a deductive content analysis approach. Three distinct interrelationships were observed across the themes. First, rules and routines regarding food and mealtime in the educators' childhood often aligned with educator beliefs and behaviors at meals in their classroom. Second, some ECETs described motivations to leave a healthy food legacy for children in their class. Finally, an experience of food insecurity appeared in narratives that also emphasized making sure children got enough through various strategies. The influence of ECET developmental histories and their related beliefs can be addressed through professional development and ongoing support. Future study should quantify model constructs in a larger sample and study their relationships over time. Copyright © 2017 Society for Nutrition Education and Behavior. Published by Elsevier Inc. All rights reserved.

Atypical social development in neonatal intensive care unit survivors at 12 months.

PubMed

Yamada, Yasumasa; Yoshida, Futoshi; Hemmi, Hayato; Ito, Miharu; Kakita, Hiroki; Yoshikawa, Toru; Hishida, Manabu; Iguchi, Toshiyuki; Seo, Tomoko; Nakanishi, Keiko

2011-12-01

Owing to advances in neonatal intensive care, many infants who are hospitalized in neonatal intensive care units (NICU) can survive and grow, and are referred to as NICU survivors. However, social development in NICU survivors has not been fully explored. To examine the social development of NICU survivors, a questionnaire consisting of the Modified Checklist for Autism in Toddlers (M-CHAT) was used. The M-CHAT was completed by the parents of either NICU survivors (n= 117) or normally delivered children (control group, n= 112) during their regular medical checkups at a corrected age of 12 months. Ninety percent of NICU survivors and 63% of control children did not pass the M-CHAT screen. As it was originally designed for children aged 18-30 months, failed M-CHAT items could have been due to developmental issues and not due to autistic spectrum disorders. However, there was a significant difference in the total number of items failed between the two groups. In particular, many NICU survivors did not pass on M-CHAT items, such as oversensitivity to noise, unusual finger movements, and attempts to attract attention. Concerning perinatal complications, infants with low birthweight and/or the need for respiratory support tended to have a higher number of failures on all M-CHAT items. NICU survivors may have distinct developmental patterns of social communication, and should be followed up for assessment of social skills and neurological development. © 2011 The Authors. Pediatrics International © 2011 Japan Pediatric Society.

Hypothesis testing in evolutionary developmental biology: a case study from insect wings.

PubMed

Jockusch, E L; Ober, K A

2004-01-01

Developmental data have the potential to give novel insights into morphological evolution. Because developmental data are time-consuming to obtain, support for hypotheses often rests on data from only a few distantly related species. Similarities between these distantly related species are parsimoniously inferred to represent ancestral aspects of development. However, with limited taxon sampling, ancestral similarities in developmental patterning can be difficult to distinguish from similarities that result from convergent co-option of developmental networks, which appears to be common in developmental evolution. Using a case study from insect wings, we discuss how these competing explanations for similarity can be evaluated. Two kinds of developmental data have recently been used to support the hypothesis that insect wings evolved by modification of limb branches that were present in ancestral arthropods. This support rests on the assumption that aspects of wing development in Drosophila, including similarities to crustacean epipod patterning, are ancestral for winged insects. Testing this assumption requires comparisons of wing development in Drosophila and other winged insects. Here we review data that bear on this assumption, including new data on the functions of wingless and decapentaplegic during appendage allocation in the red flour beetle Tribolium castaneum.

Behavioral adaptation among youth exposed to community violence: a longitudinal multidisciplinary study of family, peer and neighborhood-level protective factors.

PubMed

Jain, Sonia; Cohen, Alison Klebanoff

2013-12-01

Several studies across fields have documented the detrimental effects of exposure to violence and, separately, the power of developmental assets to promote positive youth development. However, few have examined the lives of youth exposed to violence who demonstrate resilience (that is, positive adjustment despite risk), and hardly any have examined how developmental assets may shape resilient trajectories into adulthood for youth exposed to violence. What are these resources and relationships that high-risk youth can leverage to tip the balance from vulnerability in favor of resilience? We used generalized estimating equations to examine multilevel longitudinal data from 1,114 youth of ages 11-16 from the Project on Human Development in Chicago Neighborhoods. Behavioral adaptation was a dynamic process that varied over time and by level of violence exposure. In the short term, being a victim was associated with increased aggression and delinquency. In the long term though, both victims and witnesses to violence had higher odds of behavioral adaptation. Baseline family support and family boundaries, friend support, neighborhood support, and collective efficacy had positive main effects for all youth. Additionally, having family support, positive peers, and meaningful opportunities for participation modified the effect of exposure to violence and increased odds of behavioral adaptation over time. Policies, systems, and programs across sectors should focus on building caring relationships/supports with family members and friends, positive peers, and meaningful opportunities especially for witnesses and victims of violence, to promote behavioral resilience and related outcomes into adulthood for high-risk youth.

Play-based procedural preparation and support intervention for cranial radiation

PubMed Central

Boles, Jessika; Bailey, Katherine; Cantrell, Kathryn; Kennedy, Amy; Sykes, April; Mandrell, Belinda N.

2016-01-01

Purpose The primary objective of this study was to examine the relationship between play-based procedural preparation and support intervention and use of sedation in children with central nervous system (CNS) tumors during radiation therapy. The secondary objective was to analyze the cost-effectiveness of the intervention compared to costs associated with daily sedation. Methods A retrospective chart review was conducted, and 116 children aged 5–12 years met criteria for inclusion. Outcome measures included the total number of radiation treatments received, the number of treatments received with and without sedation, and the type and duration of interventions, which consisted of developmentally appropriate play, education, preparation, and distraction provided by a certified child life specialist. Results The results of univariate analyses showed that age, tumor location, and total number and duration of interventions were significantly associated with sedation use during radiation therapy. Multivariate analyses showed that, after adjustment for age, tumor location, and craniospinal radiation, a significant relationship was found between the total number and duration of the interventions and sedation use. The implementation of a play-based procedural preparation and support intervention provided by a certified child life specialist significantly reduced health-care costs by decreasing the necessity of daily sedation. Conclusions Support interventions provided by child life specialists significantly decreased both sedation use and the cost associated with daily sedation during cranial radiation therapy in children with CNS tumors. This study supports the value of the child life professional as a play-based developmental specialist and a crucial component of cost-effective healthcare. PMID:26634562

The nursing process in crisis-oriented psychiatric home care.

PubMed

Boomsma, J; Dingemans, C A; Dassen, T W

1997-08-01

Crisis-oriented psychiatric home care is a recent development in the Dutch mental health care system. Because of the difference between psychiatric care in the home and in the hospital, an action research project was initiated. This project was directed at the nursing process and the nurses' role and skills in psychiatric home care. The main goal of the project was to describe and to standardize nursing diagnoses and interventions used in crisis-oriented and long-term psychiatric home care. The development of supporting methods of assessment and intervention were also important aspects of this project. In this article a crisis-oriented psychiatric home care programme and the first developmental research activities within this programme are described. To support the nursing process, the development of a nursing record and an assessment-format, based on Gordon's Functional Health Patterns (FHP), took place. By means of content analysis of 61 nursing records, the most frequently stated nursing diagnoses, based upon the North American Nursing Diagnosis Association (NANDA) taxonomy, were identified. The psychiatric diagnostic categories of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) were also collected. The most common categories found were those of mood disorders and schizophrenia or psychotic disorders. Seventy-five per cent of the nursing diagnoses showed up within four FHP: role-relationship, coping-stress tolerance, self-perception/self-concept and activity-exercise. The nursing diagnosis of 'ineffective individual coping' was stated most frequently. This is not surprising because of the similarities in the definitions of this nursing diagnosis and the concept of 'crisis' to which the psychiatric home care programme is oriented. Further research activities will be focused on standardization of nursing diagnosis and the interventions that nurses undertake in this type of care.

Effectiveness of Caregiver Training in Mindfulness-Based Positive Behavior Support (MBPBS) vs. Training-as-Usual (TAU): A Randomized Controlled Trial

PubMed Central

Singh, Nirbhay N.; Lancioni, Giulio E.; Karazsia, Bryan T.; Chan, Jeffrey; Winton, Alan S. W.

2016-01-01

Caregivers of individuals with intellectual and developmental disabilities (IDD) often end up having their medical and psychological well-being compromised due to the stressful nature of caregiving, especially when those in their care engage in aggressive behavior. In this study, we provided caregivers with mindfulness-based training to enable them to better manage their psychological well-being and, through this, to also enhance specific indices of quality of life of the individuals in their care. Thus, the aim of the present study was to evaluate in a randomized controlled trial (RCT) the comparative effectiveness of Mindfulness-Based Positive Behavior Support (MBPBS) and Training-as-Usual (TAU) for caregivers in a congregate care facility for individuals with severe and profound IDD. The comparative effects of the two training conditions were assessed in terms of caregiver variables care recipient variable (number of aggressive events), and agency variables Results showed that MBPBS was significantly more effective than TAU in enabling the caregivers to manage their perceived psychological stress, and to reduce the use of physical restraints and stat medications for aggressive behavior of the individuals in their care. In addition, there were significant reductions in aggressive events by the individuals in their care, 1:1 staffing of individuals with aggressive behavior, and staff turnover. Furthermore, the MBPBS training was significantly more cost-effective than the TAU training. If replicated in future RCT studies, MBPBS may provide an effective means of enhancing socially acceptable bidirectional engagement of caregivers and care recipients within a person-centered context. PMID:27766088

Assessing the market for long-term care services.

PubMed

Rice, J A; Taylor, S

1984-02-01

Traditionally, long-term care services have been used by a diverse marketplace. The chronically ill, developmentally disabled, mentally ill and aging population has looked to long-term care support services as a means of physical and emotional support. Much of the time these services were housed together for the sake of efficiency. The enormous burden these services are creating on the economy, and the growing aging population, have forced the recognition that long-term care service delivery systems must change. Alternate programming for long-term care services that reach out into the community and into individual homes is becoming an attractive approach to meeting the growing demands of the marketplace. Home health, specialized housing and creative funding mechanisms such as HMOs, are examples of initiatives undertaken by healthcare organizations that view diversification as a vehicle for survival. Market research techniques that have been used in other industries are being adapted to the healthcare industry to ensure the proper mix of services that are demanded by older, more knowledgeable consumers. The programs of the future will be market driven, with the ability of the individual to pay for such services playing a significant role. The healthcare provider of today is in a position to serve the community in new ways. By becoming an integral link in the long-term care system and by developing new programs, the organization can serve as a catalyst for change. It is up to the governing bodies and managers of these facilities to become visionaries and to accept responsibility for assessing the market for long-term care services and to guide their organization into the future.

Parenting stress and child behaviour problems among parents with intellectual disabilities: the buffering role of resources.

PubMed

Meppelder, M; Hodes, M; Kef, S; Schuengel, C

2015-07-01

Parents with intellectual disabilities (ID) are at risk for high levels of parenting stress. The present study evaluated resources, including parental adaptive functioning, financial resources and access to a support network, as moderators of the association between child behaviour problems and parenting stress. A total of 134 parents with ID and their children (ages 1-7 years) were recruited from 10 Dutch care organisations. Questionnaires were administered to the parents to obtain information on parenting stress in the parent and child domain, financial resources and their support network. Teachers and care workers reported on child behaviour problems and parental adaptive functioning, respectively. Parents experienced more stress with regard to their children than towards their own functioning and situation. Parenting stress was less in parents who were not experiencing financial hardship. Child behaviour problems were associated with high child-related parenting stress, not parent-related parenting stress. Large support networks decreased the association between child behaviour problems and child-related parenting stress. Financial resources did not significantly moderate the association. Parenting stress among parents with ID is focused on problems with the child, especially when little social support is available. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.

Designing Meaningful Developmental Reform. Research Overview

ERIC Educational Resources Information Center

Jaggars, Shanna Smith; Hodara, Michelle; Stacey, Georgia West

2013-01-01

This practitioner packet is designed to help community college administrators implement reforms to developmental education at their colleges. It reviews common impediments to developmental reform and presents data that supports directions colleges can take to create a system of developmental education that might serve students more effectively.…

Families of Individuals with Intellectual and Developmental Disabilities: Policy, Funding, Services, and Experiences

ERIC Educational Resources Information Center

Hewitt, Amy; Agosta, John; Heller, Tamar; Williams, Ann Cameron; Reinke, Jennifer

2013-01-01

Families are critical in the provision of lifelong support to individuals with intellectual and developmental disabilities (IDD). Today, more people with IDD receive long-term services and supports while living with their families. Thus, it is important that researchers, practitioners, and policy makers understand how to best support families who…

Temporal and spatial complexity of maternal thermoregulation in tropical pythons.

PubMed

Stahlschmidt, Zachary Ross; Shine, Richard; Denardo, Dale F

2012-01-01

Parental care is a widespread adaptation that evolved independently in a broad range of taxa. Although the dynamics by which two parents meet the developmental needs of offspring are well studied in birds, we lack understanding about the temporal and spatial complexity of parental care in taxa exhibiting female-only care, the predominant mode of parental care. Thus, we examined the behavioral and physiological mechanisms by which female water pythons Liasis fuscus meet a widespread developmental need (thermoregulation) in a natural setting. Although female L. fuscus were not facultatively thermogenic, they did use behaviors on multiple spatial scales (e.g., shifts in egg-brooding postures and surface activity patterns) to balance the thermal needs of their offspring throughout reproduction (gravidity and egg brooding). Maternal behaviors in L. fuscus varied by stage within reproduction and were mediated by interindividual variation in body size and fecundity. Female pythons with relatively larger clutch sizes were cooler during egg brooding, suggesting a trade-off between reproductive quantity (size of clutch) and quality (developmental temperature). In nature, caregiving parents of all taxa must navigate both extrinsic factors (temporal and spatial complexity) and intrinsic factors (body size and fecundity) to meet the needs of their offspring. Our study used a comprehensive approach that can be used as a general template for future research examining the dynamics by which parents meet other developmental needs (e.g., predation risk or energy balance).

Improving the outcome of infants born at <30 weeks' gestation - a randomized controlled trial of preventative care at home

PubMed Central

2009-01-01

Background Early developmental interventions to prevent the high rate of neurodevelopmental problems in very preterm children, including cognitive, motor and behavioral impairments, are urgently needed. These interventions should be multi-faceted and include modules for caregivers given their high rates of mental health problems. Methods/Design We have designed a randomized controlled trial to assess the effectiveness of a preventative care program delivered at home over the first 12 months of life for infants born very preterm (<30 weeks of gestational age) and their families, compared with standard medical follow-up. The aim of the program, delivered over nine sessions by a team comprising a physiotherapist and psychologist, is to improve infant development (cognitive, motor and language), behavioral regulation, caregiver-child interactions and caregiver mental health at 24 months' corrected age. The infants will be stratified by severity of brain white matter injury (assessed by magnetic resonance imaging) at term equivalent age, and then randomized. At 12 months' corrected age interim outcome measures will include motor development assessed using the Alberta Infant Motor Scale and the Neurological Sensory Motor Developmental Assessment. Caregivers will also complete a questionnaire at this time to obtain information on behavior, parenting, caregiver mental health, and social support. The primary outcomes are at 24 months' corrected age and include cognitive, motor and language development assessed with the Bayley Scales of Infant and Toddler Development (Bayley-III). Secondary outcomes at 24 months include caregiver-child interaction measured using an observational task, and infant behavior, parenting, caregiver mental health and social support measured via standardized parental questionnaires. Discussion This paper presents the background, study design and protocol for a randomized controlled trial in very preterm infants utilizing a preventative care program in the first year after discharge home designed to improve cognitive, motor and behavioral outcomes of very preterm children and caregiver mental health at two-years' corrected age. Clinical Trial Registration Number ACTRN12605000492651 PMID:19954550

45 CFR 1386.19 - Definitions.

Code of Federal Regulations, 2011 CFR

2011-10-01

..., DEPARTMENT OF HEALTH AND HUMAN SERVICES THE ADMINISTRATION ON DEVELOPMENTAL DISABILITIES, DEVELOPMENTAL... such acts as: Verbal, nonverbal, mental and emotional harassment; rape or sexual assault; striking; the... treatment plan (including a discharge plan); provide adequate nutrition, clothing, or health care to an...

Management of Developmentally Disabled Children with Chronic Infections.

ERIC Educational Resources Information Center

Andersen, Richard D.

1988-01-01

The nature of chronic infections in developmentally disabled children is reviewed, along with appropriate management strategies for care providers and implications for other children. Discussed are herpes simplex virus, cytomegalovirus, hepatitis B virus, and human immunodeficiency virus. (Author/JDD)

“Have no regrets:” Parents' experiences and developmental tasks in pregnancy with a lethal fetal diagnosis

PubMed Central

Côté-Arsenault, Denise; Denney-Koelsch, Erin

2016-01-01

Significance Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered. Methods This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis. The study was guided by Merleau-Ponty's philosophic view of embodiment. Interviews (N = 90) were conducted with mothers and fathers over time, from mid-pregnancy until 2–3 months post birth. Data analysis was iterative, through a minimum of two cycles of coding, theme identification, within- and cross-case analysis, and the writing of results. Results Despite individual differences, parents were quite consistent in sharing that their overall goal was to “Have no regrets” when all was said and done. Five stages of pregnancy were identified: Pre-diagnosis, Learning Diagnosis, Living with Diagnosis, Birth & Death, and Post Death. Developmental tasks of pregnancy that emerged were 1) Navigating Relationships, 2) Comprehending Implication of the Condition, 3) Revising Goals of Pregnancy, 4) Making the Most of Time with Baby, 5) Preparing for Birth and Inevitable Death, 6) Advocating for Baby with Integrity, and 7) Adjusting to Life in Absence of Baby. Prognostic certainty was found to be highly influential in parents' progression through developmental tasks. Conclusion The framework of parents' pregnancy experiences with lethal fetal diagnosis that emerged can serve as a useful guide for providers who care for families, especially in perinatal palliative care. Providing patient-centered care that is matched to the stage and developmental tasks of these families may lead to improved care and greater parent satisfaction. PMID:26954999

Developmental Outcomes of Foster Children: A Meta-Analytic Comparison With Children From the General Population and Children at Risk Who Remained at Home.

PubMed

Goemans, Anouk; van Geel, Mitch; van Beem, Merel; Vedder, Paul

2016-08-01

Foster care is often preferred to other placement options for children in the child welfare system. However, it is not clear how the developmental outcomes of foster children relate to children in other living arrangements. In this study, a series of meta-analyses are performed to compare the cognitive, adaptive, and behavioral functioning of children placed in foster care (n = 2,305) with children at risk who remained with their biological parents (n = 4,335) and children from the general population (n = 4,971). A systematic literature search in PsycINFO, Medline, ERIC, and ProQuest identified 31 studies suitable for inclusion (N = 11,611). Results showed that foster children had generally lower levels of functioning than children from the general population. No clear differences were found between foster children and children at risk who remained at home, but both groups experienced developmental problems. Improving the quality of foster care and future research to identify which children are best served by either foster care or in-home services are recommended. © The Author(s) 2016.

Maternal Voice and Short-Term Outcomes in Preterm Infants

PubMed Central

Krueger, Charlene; Parker, Leslie; Chiu, Sheau-Huey; Theriaque, Douglas

2013-01-01

This study explored effects of exposure to maternal voice on short-term outcomes in very low birth weight preterm infants cared for within an neonatal intensive care unit (NICU) without an ongoing program of developmental care. Using a comparative design, 53 infants born during their 27th to 28th postmenstrual week were sampled by convenience. Experimental groups were exposed to maternal voice during two developmental time periods. Group 1 listened to a recording of their mothers reciting a rhyme from 28 to 34 postmenstrual weeks. Group 2 waited 4 weeks and heard the recording from 32 to 34 weeks. The control group received routine care. The primary analysis of combined experimental groups compared to the control group revealed that the experimental infants experienced significantly fewer episodes of feeding intolerance and achieved full enteral feeds quicker compared to the control group. Further, in an analysis evaluating all three groups separately, it was noted that Group 1 experienced significantly fewer episodes of feeding intolerance compared to the control group. Study findings warrant further investigation of exposure to maternal voice and the developmental timing at which exposure is begun. PMID:20112262

Medicaid program; mental retardation--definition of "persons with related conditions"--Health Care Financing Administration. Proposed rule.

PubMed

1983-02-23

We propose to amend the 1978 Medicaid regulations on intermediate care facility services for the mentally retarded and persons with related conditions to correct the definition of "persons with related conditions". This definition, because of an inadvertent error in 1978, is currently tied to the definition of developmental disability in the Developmental Disabilities Assistance and Bill of Rights Act (DDABRA) as amended in 1978. The DDABRA, as amended, covers the mentally ill. The 1978 regulations intended to make "no substantive change" to prior Medicaid regulations which did not cover the mentally ill. The cross-reference to the DDABRA produced the unintended result of incorporating into Medicaid regulations the revision to the definition of the developmentally disabled created by the 1978 amendments to the DDABRA and may tend to cause confusion about the kind of care that is covered by the Medicaid program. Therefore, a correction of this drafting error is necessary. To avoid results of this kind in the future this proposal would establish a Medicaid definition of conditions related to mental retardation that would meet specific needs of the Medicaid program and would be independent of the definition of developmental disability in the DDABRA.

Juvenile hormone mediates developmental integration between exaggerated traits and supportive traits in the horned flour beetle Gnatocerus cornutus.

PubMed

Okada, Yasukazu; Gotoh, Hiroki; Miura, Toru; Miyatake, Takahisa; Okada, Kensuke

2012-07-01

Sexually selected exaggerated traits are often coupled with modifications in other nontarget traits. In insects with weapons, enlargements of nontarget characters that functionally support the weapon often occur (i.e. supportive traits). The support of sexual traits requires developmental coordination among functionally related multiple traits-an explicit example of morphological integration. The genetic theory predicts that developmental integration among different body modules, for which development is regulated via different sets of genes, is likely to be coordinated by pleiotropic factors. However, the developmental backgrounds of morphological integrations are largely unknown. We tested the hypothesis that the juvenile hormone (JH), as a pleiotropic factor, mediates the integration between exaggerated and supportive traits in an armed beetle Gnatocerus cornutus. During combat, males of this beetle use exaggerated mandibles to lift up their opponents with the supportive traits, that is, the head and prothoracic body parts. Application of methoprene, a JH analog (JHA), during the larval to prepupal period, induced the formation of large mandibles relative to the body sizes in males. Morphometric examination of nontarget traits elucidated an increase in the relative sizes of supportive traits, including the head and prothoracic body parts. In addition, reductions in the hind wing area and elytra length, which correspond to flight and reproductive abilities, were detected. Our findings are consistent with the genetic theory and support the idea that JH is a key pleiotropic factor that coordinates the developmental integration of exaggerated traits and supportive characters, as well as resource allocation trade-offs. © 2012 Wiley Periodicals, Inc.

[Evolution of China's rural cooperative medical care system.].

PubMed

Cai, Tian-Xin

2009-11-01

The rural cooperative medical care system of our country originated from the beginning of the 50s of the 20(th) century, which developed abnormally due to leftist ideology during the period of the Cultural Revolution. An institutional reform of the rural cooperative medical care system had began after the reform and opening up in China, but with the development of rural productivity and rapid transformation of economic structure, the traditional cooperative medical care system declined rapidly due to incompatibility with the new model of economic and social development. At the beginning of the 90s of the 20(th) century, exploring the developmental path of rural cooperative medical service, under the conditions of market economy and adopting the approach of "main individual investment with partial collective and appropriate government support", to try to establish rural cooperative medical funds, so that the rural cooperative medical system could bottom out gradually, but still failed to achieve the expected goal of universal access to health care in 2000. However, the promotion and establishment of a new rural cooperative medical care and aid system could become a major achievement aim in the 21(st) century.

Update on well-baby and well-child care from 0 to 5 years

PubMed Central

Rourke, Leslie; Leduc, Denis; Constantin, Evelyn; Carsley, Sarah; Rourke, James

2010-01-01

Abstract OBJECTIVE To provide an overview of the 2009 edition of the Rourke Baby Record (RBR), which incorporates recent research in the literature relating to preventive health care for children aged 0 to 5 years. QUALITY OF EVIDENCE Recommendations are identified as supported by good, fair, or consensus evidence, according to the classification of the Canadian Task Force on Preventive Health Care. MAIN MESSAGE New information and recommendations are given for growth monitoring, nutrition, developmental surveillance, physical examination maneuvers, immunization schedules, and advice for parents. Anticipatory guidance updates relate to injury prevention, infant swaddling, literacy facilitation, nonparental child care, parenting skills programs, serum lead levels, over-the-counter cough and cold medications, pacifiers, antipyretics, insect repellents, and dental care and oral health. The 2009 RBR is available in English and French in both National and Ontario versions and is endorsed by the College of Family Physicians of Canada and the Canadian Paediatric Society. CONCLUSION The RBR website (www.rourkebabyrecord.ca) provides a practical tool for well-baby and well-child care, including background information, current evidence and literature review appraisal, an interactive walk-through of the guides with links to further information and evidence, and additional practical resources. PMID:21156890

The Role of Developmental Screening Practices in Early Diagnosis of Autism Spectrum Disorders: An Analysis of All-Payer Claims Data in New Hampshire

ERIC Educational Resources Information Center

Humphreys, Betsy P.

2013-01-01

Universal developmental screening during pediatric well child care detects early delays in development and is a critical gateway to early intervention for young children at risk for Autism Spectrum Disorders (ASD). Developmental screening practices are highly variable, and few studies have examined screening utilization for children at risk for…

Health Outcomes of Midlife and Older Latina and Black American Mothers of Children with Developmental Disabilities

ERIC Educational Resources Information Center

Magana, Sandra; Smith, Matthew J.

2006-01-01

The impact of caring for a child with a developmental disability on the physical and mental health of Latina and Black American women was examined. We used the National Health Interview Survey to compare the health of older mothers who were co-residing with a child who had a developmental disability to the health of same age mothers without…

A developmental screening tool for toddlers with multiple domains based on Rasch analysis.

PubMed

Hwang, Ai-Wen; Chou, Yeh-Tai; Hsieh, Ching-Lin; Hsieh, Wu-Shiun; Liao, Hua-Fang; Wong, Alice May-Kuen

2015-01-01

Using multidomain developmental screening tools is a feasible method for pediatric health care professionals to identify children at risk of developmental problems in multiple domains simultaneously. The purpose of this study was to develop a Rasch-based tool for Multidimensional Screening in Child Development (MuSiC) for children aged 0-3 years. The MuSic was developed by constructing items bank based on three commonly used screening tools, validating with developmental status (at risk for delay or not) on five developmental domains. Parents of a convenient sample of 632 children (aged 3-35.5 months) with and without developmental delays responded to items from the three screening tools funded by health authorities in Taiwan. Item bank was determined by item fit of Rasch analysis for each of the five developmental domains (cognitive skills, language skills, gross motor skills, fine motor skills, and socioadaptive skills). Children's performance scores in logits derived in Rasch analysis were validated with developmental status for each domain using the area under receiver operating characteristic curves. MuSiC, a 75-item developmental screening tool for five domains, was derived. The diagnostic validity of all five domains was acceptable for all stages of development, except for the infant stage (≤11 months and 15 days). MuSiC can be applied simultaneously to well-child care visits as a universal screening tool for children aged 1-3 years on multiple domains. Items with sound validity for infants need to be further developed. Copyright © 2014. Published by Elsevier B.V.

Psychological Problems in Adolescents with Diabetes

PubMed Central

2013-01-01

For youth with type 1 diabetes (T1DM), the transition into adolescence is often associated with poorer adherence to treatment, deteriorating metabolic control, and increased risk for psychological disorders.1 Adolescence is a developmental stage during which youth are developing independence from parents, at the same time that they are experiencing rapid biological and hormonal changes.2 Thus, diabetes may compound the risk for psychological problems in adolescents. The current article summarizes recent findings on psychological problems for adolescents with diabetes and provides recommendations for ways that primary care providers can treat and support adolescents with diabetes. PMID:20568561

Psychiatric/mental health nursing.

PubMed

DeSalvo Rankin, E A

1986-09-01

From a historical perspective, psychiatric/mental health nursing as a specialized area of practice is in its early developmental stages. Within the discipline of nursing and on the interdisciplinary scene, the range and scope of actions of the psychiatric/mental health specialists is still being debated. Professional roles and responsibilities are somewhat blurred. But the role is expanding. Contemporary psychiatric nursing practice has moved to a position of collegial support among the disciplines with shared responsibility. The attitudes of society, of the nursing profession, and of the health care providers will continue to influence the maturation process of the psychiatric/mental health nursing specialty.

Developmental Screening Disparities for Languages Other than English and Spanish.

PubMed

Knuti Rodrigues, Kristine; Hambidge, Simon J; Dickinson, Miriam; Richardson, Douglas B; Davidson, Arthur J

2016-01-01

Limited English proficiency (LEP) is a known barrier to preventive care. Children from families with LEP face socioeconomic circumstances associated with increased odds of developmental delays and decreased participation in early care and education programs. Little is known about developmental surveillance and screening for children from families who speak languages other than English and Spanish. We sought to compare developmental surveillance and screening at well-child visits (WCVs) by preferred parental language. Using a retrospective cohort (n = 15,320) of children aged 8 to 40 months with ≥2 WCVs from January 1, 2006, to July 1, 2010, in a community health system, 450 children from 3 language groups (150 English, 150 Spanish, and 150 non-English, non-Spanish) were randomly selected. Chart review assessed 2 primary outcomes, developmental surveillance at 100% of WCVs and screened with a standardized developmental screening tool, and also determined whether children were referred for diagnostic developmental evaluation. Bivariate and multiple logistic regression analyses were conducted. Compared to the English-speaking group, the non-English, non-Spanish group had lower odds of receiving developmental surveillance at 100% of WCVs (odds ratio, 0.3; 95% confidence interval, 0.2, 0.5) and of being screened with a standardized developmental screening tool (odds ratio, 0.1; 95% confidence interval, 0.1, 0.2). There were no differences between the English- and Spanish-speaking groups. Though underpowered, no differences were found for referral. Improved developmental surveillance and screening are needed for children from families who speak languages other than English and Spanish. Lack of statistically significant differences between English- and Spanish-speaking groups suggests that improved translation and interpretation resources may decrease disparities. Copyright © 2016 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

Agency within Constraints: How the Agency of People Labeled with Developmental Disabilities Is Constructed in Supported Living Schemes

ERIC Educational Resources Information Center

Sinecka, Jitka

2009-01-01

This dissertation is a qualitative research study of two people labeled with developmental disabilities who live in residential settings with various supports provided by local agencies. Scott is 43 years old and lives in a Residential Supported Home with four other housemates and permanent staff support and supervision. Pat is 29 years old and…

Don't Push Your Luck! Educational Family Board (Not Bored) Game for School-Age Children Living with Chronic Conditions.

PubMed

Kennedy, Andrea; Semple, Lisa; Alderson, Kerri; Bouskill, Vanessa; Karasevich, Janice; Riske, Brenda; van Gunst, Sheri

Children who are living with chronic conditions may be supported in self-care through enjoyable active learning and family social processes. This research focused on development and evaluation of "Don't Push Your Luck!", an educational board game designed to inspire family discussion about chronic conditions, and help affected children learn about self-care choices and consequences. Mixed-method research was conducted with families from one outpatient Cystic Fibrosis Clinic and four Hemophilia Treatment Centres in Canada and United States (N=72). In phase I, board game prototype and questionnaires were refined with affected boys, siblings, and parents living with hemophilia (n=11), compared with families living with cystic fibrosis (n=11). In phase II, final board game was evaluated with families living with hemophilia (n=50). Data collection included pre-post-game questionnaires on decision-making and Haemo-QoL Index©, and post-game enjoyment. Analysis included descriptive statistics, inferential statistics (non-parametric), and qualitative themes. Findings revealed this game was an enjoyable and effective resource to engage families in self-care discussions. Key themes included communication, being involved, knowing, decisions and consequences, and being connected. Qualitative and quantitative findings aligned. Statistical significance suggests the game enhanced family engagement to support decision-making skills, as parents identified that the game helped them talk about important topics, and children gained insight regarding family supports and self-care responsibility. This board game was an effective, developmentally appropriate family resource to facilitate engagement and conversation about everyday life experiences in preparation for self-care. There is promising potential to extend this educational family board game intervention with a greater range of school-age children and families living with chronic conditions. Copyright © 2017 Elsevier Inc. All rights reserved.

Timing of high-quality child care and cognitive, language, and preacademic development.

PubMed

Li, Weilin; Farkas, George; Duncan, Greg J; Burchinal, Margaret R; Vandell, Deborah Lowe

2013-08-01

The effects of high- versus low-quality child care during 2 developmental periods (infant-toddlerhood and preschool) were examined using data from the National Institute of Child Health and Human Development Study of Early Child Care. Propensity score matching was used to account for differences in families who used different combinations of child care quality during the 2 developmental periods. Findings indicated that cognitive, language, and preacademic skills prior to school entry were highest among children who experienced high-quality care in both the infant-toddler and preschool periods, somewhat lower among children who experienced high-quality child care during only 1 of these periods, and lowest among children who experienced low-quality care during both periods. Irrespective of the care received during infancy-toddlerhood, high-quality preschool care was related to better language and preacademic outcomes at the end of the preschool period; high-quality infant-toddler care, irrespective of preschool care, was related to better memory skills at the end of the preschool period. (PsycINFO Database Record (c) 2013 APA, all rights reserved).

Intellectual and developmental disabilities in Kinshasa, Democratic Republic of the Congo: causality and implications for resilience and support.

PubMed

Aldersey, Heather M; Turnbull, H Rutherford; Turnbull, Ann P

2014-06-01

This article reports results of a 7-month qualitative study on intellectual and related developmental disabilities in Kinshasa, Democratic Republic of the Congo, particularly as they relate to the causes and meaning of intellectual and developmental disabilities (IDD). This study raises important questions related to the understanding of resilience of persons affected by IDD and the nature and purpose of support they use or desire.

Unmet needs among men with human immunodeficiency virus in community mental health care: a cross-sectional study.

PubMed

Durbin, Anna; Sirotich, Frank; Antoniou, Tony; Roesslein, Kay; Durbin, Janet; Lunsky, Yona

2016-07-01

While community-based mental health services play an important role in caring for persons with HIV (human immunodeficiency virus) and co-existing mental health disorders, the extent to which their support needs are addressed in this setting is unknown. Accordingly, we examined if HIV infection was associated with unmet support needs among men living with and without HIV receiving community mental health care. This cross-sectional study examined 215 men (135 living with HIV and 80 without HIV) receiving case management services in urban Ontario. Using the Camberwell Assessment of Need, we ascertained the prevalence of support needs in 13 domains grouped into three clusters: Basic needs (accommodation, food, benefits, and money management); self-care/functional needs (daytime activities, self-care, and looking after the home); and health/safety needs (physical, psychological distress, psychotic symptoms, safety to self, and safety to others). We used generalized estimating equations with a logit link to examine the association between HIV and unmet need in each domain. Compared to HIV-negative men, men with HIV were more likely to have mood and concurrent disorders, and intellectual and developmental disabilities. Following multivariable analyses, men with HIV had greater unmet needs related to food (odds ratio + 95% confidence interval: 9.36 (4.03, 21.75), p < 0.001); money (OR: 1.90 (1.04, 3.47), p = 0.036) [basic need domains]; psychological distress (OR: 2.39 (1.68, 3.41), p < 0.001); drug use (OR: 5.10 (2.16, 12.08) p < 0.001); and safety to self (OR: 3.35 (1.51, 7.52), p < 0.003) [health and safety domains]. Despite living in a setting with universal health insurance, men with HIV receiving community mental health support had greater unmet need in basic and health domains than HIV-negative men receiving such support. Further research is required to develop and evaluate interventions to best support community-dwelling persons with HIV and mental health disorders.

A Case Study of Students in a Developmental Literacy Course When Participating in a Mindfulness-Based Intervention

ERIC Educational Resources Information Center

Nielson Vargas, Erika Koren

2017-01-01

Success in developmental education contexts requires support not just in cognitive skills, but also in affective areas. One approach showing promise in supporting students in affective areas is mindfulness training. Mindfulness-based interventions (MBIs) can support affective needs and provide coping strategies in general as well as in some…

Experiences of Families with Relatives with Intellectual and Developmental Disabilities in a Consumer-Directed Support Program

ERIC Educational Resources Information Center

Caldwell, Joe

2007-01-01

The current study explores the experiences of families with relatives with intellectual and developmental disabilities participating in a consumer-directed support program in the USA. The Illinois Home Based Support Services Program provides a limited budget to purchase and manage services. However, within recent years the program has faced cuts…

Translating Neurodevelopmental Care Policies Into Practice: The Experience of Neonatal ICUs in France-The EPIPAGE-2 Cohort Study.

PubMed

Pierrat, Veronique; Coquelin, Anaëlle; Cuttini, Marina; Khoshnood, Babak; Glorieux, Isabelle; Claris, Olivier; Durox, Mélanie; Kaminski, Monique; Ancel, Pierre-Yves; Arnaud, Catherine

2016-10-01

To describe the implementation of neurodevelopmental care for newborn preterm infants in neonatal ICUs in France in 2011, analyze changes since 2004, and investigate factors associated with practice. Prospective national cohort study of all births before 32 weeks of gestation. Twenty-five French regions. All neonatal ICUs (n = 66); neonates surviving at discharge (n = 3,005). None. Neurodevelopmental care policies and practices were assessed by structured questionnaires. Proportions of neonates initiating kangaroo care during the first week of life and those whose mothers expressed breast milk were measured as neurodevelopmental care practices. Multilevel logistic regression analyses were used to investigate relationships between kangaroo care or breast-feeding practices and unit policies, taking into account potential confounders. Free visiting policies, bed availability for parents, and kangaroo care encouragement significantly improved between 2004 and 2011 but with large variabilities between units. Kangaroo care initiation varied from 39% for neonates in the most restrictive units to 68% in less restrictive ones (p < 0.001). Individual factors associated with kangaroo care initiation were gestational age (odds ratio, 5.79; 95% CI, 4.49-7.48 for babies born at 27-31 wk compared with babies born at 23-26 wk) and, to a lesser extent, single pregnancy, birthweight above the 10th centile, and mother's employment before pregnancy. At unit level, policies and training in neurodevelopmental care significantly influenced kangaroo care initiation (odds ratio, 3.5; 95% CI, 1.8-7.0 for Newborn Individualized Developmental Care and Assessment Program implementation compared with no training). Breast milk expression by mothers was greater in units with full-time availability professionals trained for breast-feeding support (60% vs 73%; p < 0.0001). Dissemination of neurodevelopmental practices occurred between 2004 and 2011, but large variabilities between units persist. Practices increased in units with supportive policies. Specific neurodevelopmental care training with multifaceted interventions strengthened the implementation of policies.

Mental Health, Behavioral and Developmental Issues for Youth in Foster Care.

PubMed

Deutsch, Stephanie A; Lynch, Amy; Zlotnik, Sarah; Matone, Meredith; Kreider, Amanda; Noonan, Kathleen

2015-10-01

Youth in foster care represent a unique population with complex mental and behavioral health, social-emotional, and developmental needs. For this population with special healthcare needs, the risk for adverse long-term outcomes great if needs go unaddressed or inadequately addressed while in placement. Although outcomes are malleable and effective interventions exist, there are barriers to optimal healthcare delivery. The general pediatrician as advocate is paramount to improve long-term outcomes. Copyright © 2015 Mosby, Inc. All rights reserved.

[Parent support activities in neonatal intensive care units: a national survey in Israel].

PubMed

Glasser, Saralee; Lerner-Geva, Liat; Levitski, Orna; Reichman, Brian

2009-04-01

Parents of infants in Neonatal Intensive Care Units (NICU) suffer extended periods of stress. The staffs of these departments have a major role in assisting them through this period. To describe services, programs and facilities to support parents of these infants, during and following hospitalization. Social workers of 23 NICU's completed a structured questionnaire, and the responses were summarized. The majority of units have paramedical staff in addition to social workers. Twenty-two units offer structured instruction for parents, and 12 offer lecture series. Topics include: coping with the birth of a premature infant, the infant's development and care, breastfeeding, discharge preparation, etc. In 19 departments grandparents are allowed to visit and nine also allow siblings. Most departments have breast-pump facilities and a lounge for parents; some also have refrigerators, personal lockers, etc.. Twenty units employ the "Kangaroo" method of skin-to-skin contact, and three practice elements of "individualized developmental care". Communication with parents is conducted both formally and informally. All departments have guidelines for contact with community health providers - some regularly, and some as-needed. Despite the multiplicity of programs reported in the survey, many are conducted in only a few departments. It is recommended that national guidelines be developed, which would integrate many existing activities, taking into account the needs of parents and families, medical and paramedical staff, as well as economic constraints. Clear policy guidelines and standards are necessary for this aspect of care, as they are for the medical aspects.

Self-reflection in multicultural training: be careful what you ask for.

PubMed

Murray-García, Jann L; Harrell, Steven; García, Jorge A; Gizzi, Elio; Simms-Mackey, Pamela

2005-07-01

Self-reflection in multicultural education is an important means to develop self-awareness and ultimately to change professional behavior in favor of more equitable health care to diverse populations. As conceptualized by scholars in the field of psychology, racial identity theory is critical to understanding and planning for the potentially wide range of predictable reactions to provocative activities, including those negative reactions that do not necessarily herald a flaw in programming. Careful consideration of racial identity developmental phases can also assist program planners to optimally meet the needs of individual physician trainees in their ongoing constructive professional and personal development, and in strategically mobilizing and having ready the type of institutional leadership that supports trainees' change processes. The authors focus on white physician trainees, the largest racial group of U.S. physicians and medical students. They first explain what they mean by the terms white and nonwhite. Racial identity theory is then applied, with true case examples, to explore such issues as where the self-proclaimed "color-blind" trainee fits into this theoretical schema, and how medical educators can best serve trainees who are resistant or indifferent to discussions of racism in medicine and equity in health care delivery. Ultimately, the authors' goal is to demonstrate that engendering genuine self-reflection can substantively improve the delivery of health care to the nation's diverse population. To help achieve that goal, they emphasize what to anticipate in effecting optimal trainee education and how to create an institutional climate supportive of individual change.

Understanding military families who have dependents with special health care and/or educational needs.

PubMed

Aronson, Keith R; Kyler, Sandee J; Moeller, Jeremy D; Perkins, Daniel F

2016-07-01

Little is known about military families who have a dependent with special health care and/or educational needs. The Exceptional Family Member Program (EFMP) is designed to link these families to military/community support services through family support provider (FS providers). The aim of this study was to understand FS providers' perspectives on the kinds of current challenges the families with whom they work face. This is the first study to ascertain the perspectives of professionals FS providers. FS providers (N = 160) completed a survey either on the phone or via the web. The survey consisted of four areas regarding EFMP: (1) background information; (2) caseload and work composition; (3) perceptions of Military Family needs; and (4) adequacy of community support services. The most commonly encountered diagnoses in military families were Autism (94%) and Attention-Deficit Hyperactivity Disorder (93%). Between 80% and 90% of FS providers reported working with families dealing with Emotional/Behavioral Disorders, Speech & Language Disorders, Asthma, Developmental Delays, and Mental Health Problems. FS providers noted that relocations are particularly challenging for military families in the EFMP. Training and programming of social service professionals working with military families who have a dependent with special health care and/or educational needs should focus on commonly occurring challenges seen in this population. As much as possible, FS providers should be familiar with evidence-based programs and practices designed to address these pressing problems. The process and execution of relocations should be streamlined so as to enhance continuity of care. Copyright © 2016 Elsevier Inc. All rights reserved.

Developing the protocol for the evaluation of the health foundation's 'engaging with quality initiative' – an emergent approach

PubMed Central

Soper, Bryony; Buxton, Martin; Hanney, Stephen; Oortwijn, Wija; Scoggins, Amanda; Steel, Nick; Ling, Tom

2008-01-01

In 2004 a UK charity, The Health Foundation, established the 'Engaging with Quality Initiative' to explore and evaluate the benefits of engaging clinicians in quality improvement in healthcare. Eight projects run by professional bodies or specialist societies were commissioned in various areas of acute care. A developmental approach to the initiative was adopted, accompanied by a two level evaluation: eight project self-evaluations and a related external evaluation. This paper describes how the protocol for the external evaluation was developed. The challenges faced included large variation between and within the projects (in approach, scope and context, and in understanding of quality improvement), the need to support the project teams in their self-evaluations while retaining a necessary objectivity, and the difficulty of evaluating the moving target created by the developmental approach adopted in the initiative. An initial period to develop the evaluation protocol proved invaluable in helping us to explore these issues. PMID:18973650

Psychometric properties of the Chinese version of the Psycho-educational Profile-Revised (CPEP-R).

PubMed

Shek, Daniel T L; Tsang, Sandra K M; Lam, Lorinda L; Tang, Florence L Y; Cheung, Penita M P

2005-02-01

The purpose of this study was to examine the reliability and validity of the Chinese version of the Psycho-educational Profile-Revised (PEP-R). The Chinese PEP-R (CPEP-R) was administered to 63 preschool children with symptoms of autistic disorder recruited from special child-care centers in Hong Kong. Results showed that the scales of the CPEP-R were internally consistent, reliable across raters and temporally stable. Regarding the concurrent validity of the CPEP-R, the developmental score and developmental age assessed by the CPEP-R were significantly correlated with the Merrill-Palmer Scale of Mental Tests and the Hong Kong Based Adaptive Behavior Scale. The Behavioral Scale of the CPEP-R was also significantly related to the Childhood Autism Rating Scale. Besides replicating the findings in the Western context, the present study suggests that the psychometric properties of the PEP-R are stable across cultures and the related findings support the cross-cultural reliability of the tool.

Environmental characteristics and sleep in two-month-old infants.

PubMed

Kelmanson, I A; Adulas, E I

2004-01-01

The study aimed at assessing possible relationship between the quality of infant environment and maternal reported behavioural features during sleep in 2-month-old infants. It comprised 115 randomly selected, apparently healthy infants (50 boys, 65 girls) from community setting who were singletons born at term with normal birth weight in St. Petersburg in 2001-2002. Quality of infant care was estimated using the "PROCESS" (Paediatric Review of Children's Environment Support and Stimulation) inventory enabling to measure infant's developmental stimulation and organisation. Infant's behaviour during sleep was assessed using an adapted version of the Children's Sleep Habits Questionnaire (CSHQ). The babies facing more developmental stimulation and from more organised environment less often fell asleep in parents bed (P = 0.036). Infants from more organised environment were more often put to sleep at the same time at night, more often were ready to go to sleep at bedtime and less often struggled at bed; it was more common with them to have right amount of sleep and to have about a same amount of sleep each day; less often they moved a lot during sleep and woke up in sleep. These associations remained significant after adjustment has been made for each of such potential confounders as infant's gender, weight at birth and at study, gestational age, Apgar score at 1 and 5 minutes, birth order, maternal age and education, maternal marital status, infant's feeding at birth and at study, as well as to their simultaneous effects. Lower environmental organisation and developmental stimulation may be associated with specific disadvantageous infant behavioural features during sleep. Infants with parentally reported sleep problems should be carefully considered for possible flaws in the quality of environment.

Project DULCE: Strengthening Families through Enhanced Primary Care

ERIC Educational Resources Information Center

Sege, Robert; Kaplan-Sanof, Margot; Morton, Samantha J.; Velasco-Hodgson, M. Carolina; Preer, Genevieve; Morakinyo, Grace; DeVos, Ed; Krathen, Julie

2014-01-01

Project DULCE (Developmental understanding and legal Collaboration for everyone) integrated the Strengthening families approach to building family protective factors into routine health care visits for infants in a primary health care setting. The core collaborators--Boston medical Center pediatric primary care, the medical-legal partnership |…

Financing Respite Care Services: An Initial Exploration.

ERIC Educational Resources Information Center

Ross, E. Clarke

1980-01-01

The report discusses financing respite care (short term care of the handicapped to provide family relief) services for the developmentally disabled (DD). Respite care is examined as a component of a comprehensive service delivery system for the DD, and the scope of respite care services as conceptualized by its advocates is reviewed. Nationally…

The History of Legislation and Regulations Related to Children with Developmental Disabilities: Implications for School Nursing Practice Today

ERIC Educational Resources Information Center

Dang, Michelle T.

2010-01-01

A significant number of children in the United States have developmental disabilities. Historically, many children with developmental disabilities were institutionalized and rarely seen in public. Currently, children with developmental disabilities are entitled to education and health-related support services that permit them access to public…

The effects of contributing to patient care on medical students' workplace learning.

PubMed

Smith, Samantha E; Tallentire, Victoria R; Cameron, Helen S; Wood, S Morwenna

2013-12-01

Previous research has suggested that as medical students become more senior, they should increasingly take on the roles they will enact as newly qualified doctors by contributing to patient care. However, student contribution to patient care carries inherent risks to patient safety. This study aimed to provide students with a new opportunity to contribute to patient care and to use this as a platform from which to explore the influence of contributing to patient care on medical student learning. This study took place in the context of final-year medical student prescribing education at the University of Edinburgh, Edinburgh, UK. Students on attachment at a district general hospital were afforded a unique opportunity to learn prescribing by completing in-patient drug charts in a process termed 'pre-prescribing'. All students were invited to participate in focus groups conducted by the principal researcher. Focus group discussions were audio-recorded, transcribed verbatim and thematically analysed. Six focus groups, each lasting 20-50 minutes, were conducted with four to seven participants (33 students in total). The emerging themes took the form of developmental outcomes and learning processes. Developmental outcomes included ability to perform the task, modification of attitudes towards the task, formation of a professional identity, and development of relationships within the team. The central feature of the experience which influenced all developmental outcomes, was making mistakes. The themes interact in complex ways and all contribute towards development as a professional. This study has demonstrated that contributing to patient care enhances students' development as professionals. Some of these developmental outcomes, such as improvements in knowledge and skills, may be achievable to some extent within the classroom. Other changes, such as developing relationships, forming a sense of professional identity and modifying attitudes, might arguably be achievable only within the context of contributing to patient care. © 2013 John Wiley & Sons Ltd.

Thinking Developmentally: The Next Evolution in Models of Health.

PubMed

Garner, Andrew S

2016-09-01

As the basic sciences that inform conceptions of human health advance, so must the models that are used to frame additional research, to teach the next generation of providers, and to inform health policy. This article briefly reviews the evolution from a biomedical model to a biopsychosocial (BPS) model and to an ecobiodevelopmental (EBD) model. Like the BPS model, the EBD model reaffirms the biological significance of psychosocial features within the patient's ecology, but it does so at the molecular and cellular levels. More importantly, the EBD model adds the dimension of time, forcing providers to "think developmentally" and to acknowledge the considerable biological and psychological consequences of previous experiences. For the health care system to move from a reactive "sick care" system to a proactive "well care" system, all providers must begin thinking developmentally by acknowledging the dynamic but cumulative dance between nature and nurture that drives development, behavior, and health, not only in childhood, but across the lifespan.

Rehabilitation in children with juvenile chronic arthritis.

PubMed

Häfner, R; Truckenbrodt, H; Spamer, M

1998-05-01

Chronic childhood arthritis impairs joint function and may result in severe physical handicap. Joint pain and inflammation trigger a vicious cycle that often ends in joint damage and fixed deformities. A comprehensive rehabilitation programme must start early to restore loss of function and prevent permanent handicap. It is dominated by a physiotherapeutic regimen consisting of pain relief, movement expansion, training of muscular coordination and finally re-integration of a physiological movement pattern. The approaches of occupational therapy become integrated into the treatment programme, concentrating on joint protection and self-care training. Additional aids support the aim of joint restoration. They include individual splinting, adapted footwear and walking aids. Depending on the child's age and developmental status different aspects of rehabilitation dominate. Small children need adequate mobility to promote their psychosocial development. In later years integration into school life and the peer group becomes important. Adolescents require help for an adequate vocational training and self-care support. Last but not least, parental education and integration of the whole family into the rehabilitation programme markedly improve the patient's prognosis.

"I just had to be flexible and show good patience": management of interactional approaches to enact mentoring roles by peer mentors with developmental disabilities.

PubMed

Schwartz, Ariel E; Kramer, Jessica M

2017-06-08

Peer mentoring may be an effective approach for fostering skill development for mentors and mentees with developmental disabilities. However, little is known about how mentors with developmental disabilities perceive and enact their roles. (1) How do young adults with developmental disabilities describe their role as a peer mentor in the context of instrumental peer mentoring? (2) How do they enact their perceived roles? Thematic analysis of semi-structured reflections completed by six mentors with developmental disabilities (ages 17-35) with multiple mentoring experiences. Mentors perceived themselves as professionals with a primary role of teaching, and for some mentoring relationships, a secondary role of developing an interpersonal relationship. To enact these roles, mentors used a supportive interactional approach characterized by actions such as encouragement and sharing examples and dispositions, such as flexibility and patience. Mentors monitored mentee learning and engagement within the mentoring session and, as needed, adjusted their approach to optimize mentee learning and engagement. To successfully manage their interactional approach, mentors used supports such as peer mentoring scripts, tip sheets, and supervisors. While mentors reported several actions for teaching, they may benefit from training to learn approaches to facilitate more consistent development of interpersonal relationships. Implications for Rehabilitation Peer mentoring may be an effective approach for fostering skill development for young adult mentors and mentees with developmental disabilities. In this study, young adult peer mentors with developmental disabilities perceived themselves as professionals with a primary role of teaching and a secondary role of developing an interpersonal relationship. Peer mentors used actions and dispositions that matched their perceived roles and supported mentees with developmental disabilities to engage in instrumental mentoring. With supports and training, young adults with developmental disabilities can successfully execute the complex relational and teaching tasks required of peer mentoring.

State Policies and Practices in Behavior Supports for Persons with Intellectual and Developmental Disabilities in the United States: A National Survey

ERIC Educational Resources Information Center

Rotholz, David A.; Moseley, Charles R.; Carlson, Kinsey B.

2013-01-01

Providing effective behavioral supports to decrease challenging behavior and replace it with appropriate alternative skills is essential to meeting the needs of many individuals with intellectual and developmental disabilities (IDD). It is also necessary for fulfilling the requirements of Medicaid-funded individual support plans and is important…

Caring for Infants and Toddlers.

ERIC Educational Resources Information Center

Behrman, Richard E., Ed.

2001-01-01

This issue of "The Future of Children" focuses on the daily care of infants and toddlers in the United States, including shifting caregiving arrangement for children younger than 3 years, developmental needs of infants and toddlers, findings of recent child care studies, public opinion regarding child care, and recent innovations seeking…

The Influence of Perception on Maternal Sensitivity in Foster Care

ERIC Educational Resources Information Center

Ponciano, Leslie

2012-01-01

This study examined the association between perceptions of children's care needs and maternal sensitivity with 76 dyads in foster care. Foster mothers were more sensitive to typically developing children perceived as requiring easier care and were less sensitive to children with developmental delays. Adopting foster mothers were sensitive with…

Developing a caries risk registry to support caries risk assessment and management for children: A quality improvement initiative.

PubMed

Ruff, Jesley C; Herndon, Jill Boylston; Horton, Roger A; Lynch, Julie; Mathwig, Dawn C; Leonard, Audra; Aravamudhan, Krishna

2017-10-27

Health registries are commonly used in medicine to support public health activities and are increasingly used in quality improvement (QI) initiatives. Illustrations of dental registries and their QI applications are lacking. Within dentistry, caries risk assessment implementation and documentation are vital to optimal patient care. The purpose of this article is to describe the processes used to develop a caries risk assessment registry as a QI initiative to support clinical caries risk assessment, caries prevention, and disease management for children. Developmental steps reflected Agency for Healthcare Research and Quality recommendations for planning QI registries and included engaging "champions," defining the project, identifying registry features, defining performance dashboard indicators, and pilot testing with participant feedback. We followed Standards for Quality Improvement Reporting Excellence guidelines. Registry eligibility is patients aged 0-17 years. QI tools include prompts to register eligible patients; decision support tools grounded in evidence-based guidelines; and performance dashboard reports delivered at the provider and aggregated levels at regular intervals. The registry was successfully piloted in two practices with documented caries risk assessment increasing from 57 percent to 92 percent and positive feedback regarding the potential to improve dental practice patient centeredness, patient engagement and education, and quality of care. The caries risk assessment registry demonstrates how dental registries may be used in QI efforts to promote joint patient and provider engagement, foster shared decision making, and systematically collect patient information to generate timely and actionable data to improve care quality and patient outcomes at the individual and population levels. © 2017 American Association of Public Health Dentistry.

Implementing clinical governance in English primary care groups/trusts: reconciling quality improvement and quality assurance

PubMed Central

Campbell, S; Sheaff, R; Sibbald, B; Marshall, M; Pickard, S; Gask, L; Halliwell, S; Rogers, A; Roland, M

2002-01-01

Objectives: To investigate the concept of clinical governance being advocated by primary care groups/trusts (PCG/Ts), approaches being used to implement clinical governance, and potential barriers to its successful implementation in primary care. Design: Qualitative case studies using semi-structured interviews and documentation review. Setting: Twelve purposively sampled PCG/Ts in England. Participants: Fifty senior staff including chief executives, clinical governance leads, mental health leads, and lay board members. Main outcome measures: Participants' perceptions of the role of clinical governance in PCG/Ts. Results: PCG/Ts recognise that the successful implementation of clinical governance in general practice will require cultural as well as organisational changes, and the support of practices. They are focusing their energies on supporting practices and getting them involved in quality improvement activities. These activities include, but move beyond, conventional approaches to quality assessment (audit, incentives) to incorporate approaches which emphasise corporate and shared learning. PCG/Ts are also engaged in setting up systems for monitoring quality and for dealing with poor performance. Barriers include structural barriers (weak contractual levers to influence general practices), resource barriers (perceived lack of staff or money), and cultural barriers (suspicion by practice staff or problems overcoming the perceived blame culture associated with quality assessment). Conclusion: PCG/Ts are focusing on setting up systems for implementing clinical governance which seek to emphasise developmental and supportive approaches which will engage health professionals. Progress is intentionally incremental but formidable challenges lie ahead, not least reconciling the dual role of supporting practices while monitoring (and dealing with poor) performance. PMID:12078380

Family Context, Mexican-Origin Adolescent Mothers' Parenting Knowledge, and Children's Subsequent Developmental Outcomes

PubMed Central

Jahromi, Laudan B.; Guimond, Amy B.; Umaña-Taylor, Adriana J.; Updegraff, Kimberly A.; Toomey, Russell B.

2014-01-01

This study examined parenting knowledge among Mexican-origin adolescent mothers (N = 191; M age = 16.26 years), family contextual factors associated with adolescents' parenting knowledge, and toddlers' (M age = 2.01 years) subsequent developmental outcomes. Data came from home interviews and direct child assessments. Adolescents both under- and over-estimated children's developmental timing, and showed differences in their knowledge of specific developmental domains. Instrumental support from mother figures was positively linked to adolescents' knowledge accuracy, whereas emotional support was negatively related to adolescents' knowledge confidence. Furthermore, whereas mother figures' autonomy-granting was positively linked to knowledge confidence, psychological control was associated with less accurate adolescent parenting knowledge. Toddlers of adolescents with more accurate knowledge showed positive developmental functioning. Intervention implications are discussed. PMID:24004448

Practice parameters and financial factors impacting developmental-behavioral pediatrics.

PubMed

Adair, Robin; Perrin, Ellen; Hubbard, Carol; Savageau, Judith A

2010-01-01

Little has been published about the professional activities of developmental-behavioral (DB) pediatricians. To better understand the settings in which DB pediatricians work, allocation of their professional time, and how financial considerations impact their practice, the Society for Developmental and Behavioral Pediatrics surveyed its membership. An extensive on-line three-part survey was conducted in 2006-2007 assessing sociodemographic characteristics, practice descriptors, coding and billing practices, productivity goals and perceived pressures among Society for Developmental and Behavioral Pediatric's 438 physician members. Of the pediatricians responding, representing all regions of the United States, 93% were DB pediatrics subspecialty board certified or eligible. The majority was practicing DB pediatrics full-time (73%); and 67% were exclusively in academic settings. All reported seeing patients, 84% reported teaching, 76% reported having administrative responsibilities, and 46% reported conducting research. Despite having non-clinical responsibilities, full-time equivalent positions included an average of 25 hours per week in direct patient care and 14.5 hours per week (37% of clinical time) in indirect patient care. Only 42% reported working with multidisciplinary teams. Salaries varied widely within and across regions. Deficits in billing/coding practices, awareness of personal clinical productivity, and familiarity with national productivity benchmarks were identified. DB pediatricians work in diverse settings nationwide. They provide considerable time in indirect patient care, which is poorly reimbursed in general and relative to direct patient care. The results of this survey offer opportunities for provider, institutional and payer education.

Tobacco use and its treatment among young people in mental health settings: a qualitative analysis.

PubMed

Prochaska, Judith J; Fromont, Sebastien C; Wa, Christina; Matlow, Ryan; Ramo, Danielle E; Hall, Sharon M

2013-08-01

Youth with psychiatric disorders are at increased risk of tobacco use. Outpatient mental health settings have received little investigation for delivering tobacco treatment. This study obtained formative data to guide development of a tobacco cessation program for transitional age youth with co-occurring psychiatric disorders with a focus on outpatient mental health settings. Applying qualitative methods, we analyzed transcripts from interviews with 14 mental health clients (aged 16-23) and 8 mental health providers. The youth identified internal (nicotine addiction and mood), social, parental, and media influences to their use of tobacco. Providers' viewed youth tobacco use as a normative developmental process, closely tied to management of psychiatric symptoms, supported by parents, and of lower priority relative to youth alcohol and illicit drug use. Youth and providers believed that clinicians can do more to address tobacco use in practice and emphasized nonjudgmental support and nondirective approaches. Top recommended quitting strategies, however, differed notably for the youth (cold turkey, support from friends, physical activity, hobbies) and providers (cessation pharmacotherapy, cessation groups, treatment referrals). Mental health providers' greater prioritization of other substances and view of youth smoking as developmentally normative and a coping strategy for psychopathology are likely contributing to the general lack of attention to tobacco use currently. Integrating care within mental health settings would serve to reach youth in an arena where clinical rapport is already established, and study findings suggest receptivity for system improvements. Of consideration, however, is the apparent disconnect between provider and youth recommended strategies for supporting cessation.

Tobacco Use and Its Treatment Among Young People in Mental Health Settings: A Qualitative Analysis

PubMed Central

2013-01-01

Background: Youth with psychiatric disorders are at increased risk of tobacco use. Outpatient mental health settings have received little investigation for delivering tobacco treatment. This study obtained formative data to guide development of a tobacco cessation program for transitional age youth with co-occurring psychiatric disorders with a focus on outpatient mental health settings. Methods: Applying qualitative methods, we analyzed transcripts from interviews with 14 mental health clients (aged 16–23) and 8 mental health providers. Results: The youth identified internal (nicotine addiction and mood), social, parental, and media influences to their use of tobacco. Providers’ viewed youth tobacco use as a normative developmental process, closely tied to management of psychiatric symptoms, supported by parents, and of lower priority relative to youth alcohol and illicit drug use. Youth and providers believed that clinicians can do more to address tobacco use in practice and emphasized nonjudgmental support and nondirective approaches. Top recommended quitting strategies, however, differed notably for the youth (cold turkey, support from friends, physical activity, hobbies) and providers (cessation pharmacotherapy, cessation groups, treatment referrals). Conclusions: Mental health providers’ greater prioritization of other substances and view of youth smoking as developmentally normative and a coping strategy for psychopathology are likely contributing to the general lack of attention to tobacco use currently. Integrating care within mental health settings would serve to reach youth in an arena where clinical rapport is already established, and study findings suggest receptivity for system improvements. Of consideration, however, is the apparent disconnect between provider and youth recommended strategies for supporting cessation. PMID:23322765

Chronic Overeating without Obesity in Children with Developmental Disabilities: Description of a New Syndrome.

ERIC Educational Resources Information Center

Ayoob, Keith-Thomas; And Others

1994-01-01

Thirteen children (ages 3.1 to 5.2 years) referred for developmental delay and excessive eating (without obesity) were evaluated. Commonalities included being in foster care, prenatal drug exposure, and abnormally withdrawn and/or aggressive behavior. (Author/DB)

The Adopted Adolescent. Selected Papers Number 55.

ERIC Educational Resources Information Center

Banning, Anne

This review of studies on clinical and nonclinical populations explores outcomes of adoption and developmental issues for adolescents, and in particular, developmental problems for adopted adolescents. Studies on nonclinical populations demonstrate that adoption is a highly successful form of substitute care. Prospective longitudinal studies show…

Quo Vadis? The Future of Psychoanalysis.

PubMed

Cortina, Mauricio

2016-12-01

Although contemporary psychoanalysis is split into different schools and traditions, there is growing support for some of the main tenets of contemporary psychodynamic thinking from attachment theory, infant research, developmental psychopathology, new models of motivation, the neuroscience of emotions and emotional regulation, and the discovery of different implicit and explicit memory systems. These tenets, which psychodynamic clinicians of all stripes encounter in their daily work with clients, are the following: (1) that large footprints are left over from infancy and childhood which involved insensitive, intrusive, frightening, or shaming care; (2) the carryover of these relational experiences into adulthood are expressed as unconscious expectations and attributions we make of others (transference and countertransference; (3) defensive processes and emotional regulation and deregulatory patterns develop to cope with these unhealthy relations. Many findings from infant research, attachment theory, and new models of motivation and neuroscience have developed alongside the intersubjective and relational turn in psychoanalysis in the last sixty years. To different degrees this new developmental science has been incorporated into the relational field. This essay is a plea to incorporate this new science in the teaching of psychodynamic psychotherapy in order to create a dialogue among different relational and intersubjective traditions in psychoanalysis that could reduce the splintering and support efforts toward integration.

Americans with Developmental Disabilities: Policy Directions for the States.

ERIC Educational Resources Information Center

Wright, Barbara; King, Martha P.

This Task Force report offers recommendations to state legislatures in the following policy areas: early intervention, family support, transition services, community living, supported employment, and funding for persons with developmental disabilities. Stressed is a consumer orientation which focuses on individual and family strengths and needs.…

Long-Term Care for People with Development Disabilities: A Critical Analysis.

ERIC Educational Resources Information Center

Palley, Howard A.; Van Hollen, Valerie

2000-01-01

Explores how the trends toward long-term community care affecting people with developmental disabilities developed. Appropriateness of care and quality of life issues are discussed. Reviews the development of long-term care for frail and disabled elderly people and explores the arguments for a continuum of care that have developed in this area.…

A qualitative study: Mothers of late preterm infants relate their experiences of community-based care

PubMed Central

Dosani, Aliyah; Oliver, Lynnette May; Lodha, Abhay K; Young, Marilyn

2017-01-01

Purpose In Alberta, the high occurrence of late preterm infants and early hospital discharge of mother-infant dyads has implications for postpartum care in the community. Shortened hospital stay and complexities surrounding the care of biologically and developmentally immature late preterm infants heighten anxiety and fears. Our descriptive phenomenological study explores mothers’ experience of caring for their late preterm infants in the community. Methods Eleven mothers were interviewed using a semi-structured interview guide. Interview transcripts were analysed using an interpretive thematic approach. Findings The mothers’ hospital experience informed their perspective that being a late preterm infant was not a “big deal,” and they tended to treat their infant as normal. “Feeding was really problem,” especially the variability in feeding effectiveness, which was not anticipated. Failing to recognize late preterm infants’ feeding distress exemplified lack of knowledge of feeding cues and tendencies to either rationalize or minimize feeding concerns. Public health nurses represent a source of informational support for managing neonatal morbidities associated with being late preterm; however, maternal experiences with public health nurses varied. Some nurses used a directive style that overwhelmed certain mothers. Seeing multiple public health nurses and care providers was not always effective, given inconsistent and contradictory guidance to care. These new and changing situations increased maternal anxiety and stress and influenced maternal confidence in care. Fathers, family, and friends were important sources of emotional support. Conclusion After discharge, mothers report their lack of preparation to meet the special needs of their late preterm infants. Current approaches to community-based care can threaten maternal confidence in care. New models and pathways of care for late preterm infants and their families need to be responsive to the spectrum of feeding issues encountered, limit duplication of services, and ensure consistent and effective care that parents will accept. PMID:28334033

Adverse Childhood Experiences and Psychosocial Well-Being of Women Who Were in Foster Care as Children

PubMed Central

Bruskas, Delilah; Tessin, Dale H

2013-01-01

Background and Objective: Research has shown that many children in foster care later have psychosocial problems as adults; this is often attributed to cumulative adversities and a lack of supportive caregivers. The risk factors associated with foster care, such as maternal separation and multiple placements, often counteract many protective factors that can ameliorate the effects of childhood adversities. This study assessed the relationship between adverse childhood experiences (ACEs) and psychosocial well-being in women who were in foster care as children. Methods: A total of 101 women aged 18–71 years (mean, 36.83 [12.95] years) completed an anonymous online survey based on the 10-item ACE Questionnaire, the Sense of Coherence questionnaire, and the General Health Questionnaire. Results: More than 56% of respondents were identified as experiencing current psychological distress. Sense of coherence scores (mean, 54.26 [15.35]) showed a significant inverse association with both General Health Questionnaire (mean, 14.83 [5.88]) and ACE (mean, 5.68 [2.90]) scores (r = −0.64 and −0.31, respectively) and 97% reported at least 1 ACE, 70% reported ≥ 5 and 33% reported ≥ 8. Linear regressions indicated that ACEs reported to occur before foster care were associated with lower levels of sense of coherence (8%) and higher levels of psychological distress (6%). Physical neglect and living in a dysfunctional household (parental loss, maternal abuse, or household member associated with substance abuse or prison) significantly decreased during foster care by 16 and 19 percentage points, respectively. Rates of emotional and physical abuse did not change. Conclusion: The number of ACEs was associated with the level of psychological distress. Our findings suggest that children entering the foster care system are already vulnerable and at risk of experiencing ACEs during foster care and psychological distress during adulthood. Measures implemented to protect children must not cause more harm than good. Social services that preserve and strengthen the family unit and reduce the number of ACEs both before and during foster care are recommended. Social workers and clinicians who are trained to address and manage the unique developmental needs of children in foster care may help reduce the effects of ACEs and optimize developmental health. PMID:24355905

Histories of Developmental Education. CRDEUL Monograph.

ERIC Educational Resources Information Center

Lundell, Dana Britt, Ed.; Higbee, Jeanne L., Ed.

This collection of papers on the history of developmental education includes: "Historical Perspectives: With Hindsight We Gain Foresight" (Normal Stahl); "Supporting the Research Mission" (David V. Taylor); "A Brief History of the American Council of Developmental Education Associations" (Hunter R. Boylan);…

Age at adoption from institutional care as a window into the lasting effects of early experiences

PubMed Central

Julian, Megan M.

2013-01-01

One of the major questions of human development is how early experience impacts the course of development years later. Children adopted from institutional care experience varying levels of deprivation in their early life followed by qualitatively better care in an adoptive home, providing a unique opportunity to study the lasting effects of early deprivation and its timing. The effects of age at adoption from institutional care are discussed for multiple domains of social and behavioral development within the context of several prominent developmental hypotheses about the effects of early deprivation (cumulative effects, experience-expectant developmental programming, and experience-adaptive developmental programming). Age at adoption effects are detected in a majority of studies, particularly when children experienced global deprivation and were assessed in adolescence. For most outcomes, institutionalization beyond a certain age is associated with a step-like increase in risk for lasting social and behavioral problems, with the step occurring at an earlier age for children who experienced more severe levels of deprivation. Findings are discussed in terms of their concordance and discordance with our current hypotheses, and speculative explanations for the findings are offered. PMID:23576122

Brain-oriented care in the NICU: a case study.

PubMed

Bader, Lisa

2014-01-01

With the advances of technology and treatment in the field of neonatal care, researchers can now study how the brains of preterm infants are different from full-term infants. The differences are significant, and the outcomes are poor overall for premature infants as a whole. Caregivers at the bedside must know that every interaction with the preterm infant affects brain development-it is critical to the developmental outcome of the infant. The idea of neuroprotection is not new to the medical field but is a fairly new idea to the NICU. Neuroprotection encompasses all interventions that promote normal development of the brain. The concept of brain-oriented care is a necessary extension of developmental care in the NICU. By following the journey of 26-week preterm twin infants through a case study, one can better understand the necessity of brain-oriented care at the bedside.

Dateline Child Care.

ERIC Educational Resources Information Center

Child Care Information Exchange, 1987

1987-01-01

Discusses developmental trends influencing child care programs. They include growing popularity of flexible benefit plans for employees; American children's quality of life; state and local child care initiatives; children's uses of computers; and lack of after-school programs for low income children. Growth of accredited centers is also…

Fired up or burned out? How developmental challenge differentially impacts leader behavior.

PubMed

Courtright, Stephen H; Colbert, Amy E; Choi, Daejeong

2014-07-01

Leadership development research has largely drawn on experiential and enactive learning theories to explore the positive effects of developmental challenge on leaders. In contrast, we examined potential positive and negative effects of developmental challenge (i.e., challenging job assignments) on leader behavior through an alternative theoretical lens--transactional stress theory. We predicted, on one hand, that developmental challenge may be associated with higher leader engagement and transformational leadership behavior; however, developmental challenge also has the potential to be associated with higher leader emotional exhaustion and laissez-faire leadership behavior. We further proposed that leadership self-efficacy (LSE) moderates these potential effects of developmental challenge and helps explain why leaders react either positively or negatively to developmental challenge. We tested our hypotheses in a sample of 153 leaders and 631 direct reports at a Fortune 500 company. Findings supported positive relationships among developmental challenge, leader engagement, and transformational leadership. However, we also found support for significant relationships among developmental challenge, emotional exhaustion, and laissez-faire leadership. Additionally, leaders lower in LSE were more likely to encounter the negative effects of developmental challenge by experiencing increased emotional exhaustion and displaying laissez-faire leadership behaviors. Our study contributes to theory and practice by elucidating a "dark side" of developmental challenge, identifying LSE as a moderator of the negative effects of developmental challenge, identifying antecedents of transformational and laissez-faire leadership behaviors, and investigating demands and stress in leadership roles.

Child Development Research in Court.

ERIC Educational Resources Information Center

Shelton, Lawrence G.

Recent trends in litigation involving child custody, parental rights, foster care, and child abuse draw heavily on interpretations of developmental research and theory. In a recent landmark case, a developmentalist testified on a number of issues for which scant developmental data were found. These issues included neonatal bonding and the…

Improving state Medicaid contracts and plan practices for children with special needs.

PubMed

Fox, H B; McManus, M A

1998-01-01

The rapid transition of state Medicaid beneficiaries into fully capitated managed care plans requires a special focus on children with chronic or disabling conditions, who often depend on numerous pediatric physicians and other specialty services for health care and related services. Because managed care arrangements for this population are growing in popularity nationwide, it is important that states craft managed care contracts to address the unique needs of children with complex physical, developmental, and mental health problems. Based on the research reported in this article, in-depth interviews with state Medicaid agency staff, interviews with medical directors and administrators of managed care plans serving Medicaid recipients, and input from experts in pediatrics and managed care, a set of recommendations is made for tailoring managed care contracts to meet the needs of this vulnerable group of children. Six contracting elements that should be adopted by state Medicaid agencies include (1) clarifying the specificity of pediatric benefits, (2) defining appropriate pediatric provider capacity requirements, (3) developing a medical necessity standard specific to children, (4) identifying pediatric quality-of-care measures, (5) setting appropriate pediatric capitation rates, and (6) creating incentives for high-quality pediatric care. Nine approaches that should be adopted by managed care practices interested in providing high-quality care for children with special needs also are identified. These include (1) ensuring that assigned primary care providers have appropriate training and experience, (2) offering support systems for primary care practices, (3) providing specialty consultation for primary care providers, (4) establishing arrangements for the comanagement of primary and specialty pediatric services, (5) arranging for comprehensive care coordination, (6) establishing flexible service authorization policies, (7) implementing provider profiling systems that adjust for pediatric case mix, (8) creating financial incentives for serving children with special needs, and (9) encouraging family involvement in plan operations. Implementing these changes to managed care contracting could have a major impact on the quality and comprehensiveness of health care received by children with special needs. Successful implementation, however, requires strong support from both state Medicaid agencies and the managed care plans dedicated to serving this population.

Understanding the Support Needs of People with Intellectual and Related Developmental Disabilities through Cluster Analysis and Factor Analysis of Statewide Data

ERIC Educational Resources Information Center

Viriyangkura, Yuwadee

2014-01-01

Through a secondary analysis of statewide data from Colorado, people with intellectual and related developmental disabilities (ID/DD) were classified into five clusters based on their support needs characteristics using cluster analysis techniques. Prior latent factor models of support needs in the field of ID/DD were examined to investigate the…

The Perceived Role of Direct Support Professionals in the Health Promotion Efforts of Adults with Developmental Disabilities Receiving Support Services

ERIC Educational Resources Information Center

Leser, Kendall A.; Pirie, Phyllis L.; Ferketich, Amy K.; Havercamp, Susan M.; Wewers, Mary Ellen

2018-01-01

Direct support professionals (DSPs) play a large social role in the lives of people with developmental disabilities (DD) and have the potential to influence their health behaviors. Six qualitative focus groups (n = 48) were conducted with DD community agency administrators, DSPs, family members and adults with DD to better understand the perceived…

A comparative review of developmental screening tests.

PubMed

Glascoe, F P; Martin, E D; Humphrey, S

1990-10-01

Public Law 99-457 amends the Education of the Handicapped Act to include services for children from birth through 3 years. Inasmuch as detection and referral of children with developmental delays continues to reside largely with pediatricians and other health care professionals, developmental screening, using standardized tests, is increasingly important. To help physicians select from the array of instruments, 19 different screening tests were administered by a pediatrician and rated by a panel of pediatricians and a special educator. While the panel found few tests that fit within the time constraints of pediatric practice, several tests approached standards for educational and psychologic tests. These included the Battelle Developmental Inventory Screening Test, Infant Monitoring System, Developmental Indicators for Assessment of Learning-Revised, Screening Children for Related Early Educational Needs, and the Developmental Profile II.

Healthcare for Persons with Intellectual and Developmental Disability in the Community

PubMed Central

Ervin, David A.; Hennen, Brian; Merrick, Joav; Morad, Mohammed

2014-01-01

Introduction: While there has been impressive progress in creating and improving community healthcare delivery systems that support people with intellectual and developmental disabilities (IDD), there is much more that can and should be done. Methods: This paper offers a review of healthcare delivery concepts on which new models are being developed, while also establishing an historical context. We review the need for creating fully integrated models of healthcare, and at the same time offer practical considerations that range from specific healthcare delivery system components to the need to expand our approach to training healthcare providers. The models and delivery systems, and the areas of needed focus in their development are reviewed to set a starting point for more and greater work going forward. Conclusion: Today, we celebrate longer life spans of people with IDD, increased attention to the benefits of healthcare that is responsive to their needs, and the development of important healthcare delivery systems that are customized to their needs. We also know that the growing body of research on health status offers incentive to continue developing healthcare structures for people with IDD by training healthcare providers about the needs of people with IDD, by establishing systems of care that integrate acute healthcare with long-term services and support, by developing IDD medicine as a specialty, and by building health promotion and wellness resources to provide people with IDD a set of preventative health supports. PMID:25077139

Employment Support Services for Students with Intellectual and Developmental Disabilities Attending Postsecondary Education Programs

ERIC Educational Resources Information Center

Petcu, Stefania D.; Chezan, Laura C.; Van Horn, M. Lee

2015-01-01

Our purpose in this study is to offer a more comprehensive understanding of how students with intellectual and developmental disabilities attending postsecondary education programs are prepared for competitive employment. Data collected through a national survey indicate that the vocational-related support services offered frequently by…

E-Sponsor Mentoring: Support for Students in Developmental Education

ERIC Educational Resources Information Center

Hodges, Russ; Payne, Emily Miller; Dietz, Albert; Hajovsky, Michelle

2014-01-01

Researchers investigated the use of two mentoring programs for students who were part of a support component of Fundamentals of Conceptual Understanding and Success (FOCUS), a comprehensive intervention grant for students enrolled in developmental mathematics coursework at a large public Texas university. The technology-based mentoring program,…

A screening approach using zebrafish for the detection and characterization of developmental neurotoxicity.

EPA Science Inventory

Thousands of chemicals have little or no data to support developmental neurotoxicity risk assessments. Current developmental neurotoxicity guideline studies mandating mammalian model systems are expensive and time consuming. Therefore a rapid, cost-effective method to assess de...

45 CFR 1388.6 - Program criteria-services and supports.

Code of Federal Regulations, 2010 CFR

2010-10-01

..., integration and inclusion of individuals with developmental disabilities and their families. (b) UAP community... DEVELOPMENT SERVICES, DEPARTMENT OF HEALTH AND HUMAN SERVICES THE ADMINISTRATION ON DEVELOPMENTAL DISABILITIES, DEVELOPMENTAL DISABILITIES PROGRAM THE UNIVERSITY AFFILIATED PROGRAMS § 1388.6 Program criteria—services and...

Perceptions of School Nurses in the Care of Students with Disabilities

ERIC Educational Resources Information Center

Singer, Barbara

2013-01-01

Many children are surviving prematurity and serious childhood illnesses due to advances in technology and medical care. As a result, more children are entering public school systems with complex health care needs and intellectual and developmental disabilities. School nurses are responsible for caring for these children; however, many nurses feel…

Diversity, Child Care Quality, and Developmental Outcomes

ERIC Educational Resources Information Center

Burchinal, Margaret R.; Cryer, Debby

2003-01-01

It is widely accepted that high quality child care enhances children's cognitive and social development, but some question whether what constitutes quality care depends on the child's ethnic and cultural background. To address this question, secondary analysis of data from the two largest studies of child care experiences in the United States,…

Developmental communication impairments in adults: outcomes and life experiences of adults and their parents.

PubMed

Clegg, Judy; Ansorge, Lydia; Stackhouse, Joy; Donlan, Chris

2012-10-01

This study identifies the outcomes and documents the longitudinal life experiences of adults who attended a specialist residential school for children with pervasive and complex developmental communication impairments. Semistructured interviews were carried out with 26 adult ex-pupils who had attended the school and the parents of 15 of the ex-pupils. Seven key themes were identified from the data, including (a) lack of appropriate support and the impact of this in early childhood, (b) advantages and disadvantages of specialist educational provision compared to mainstream and other provision, (c) changing impact of developmental communication impairments over time, (d) challenging transition away from specialist educational provision, (e) absence of appropriate support for adults with developmental communication impairments, (f) persisting impact of developmental communication impairments on social and emotional functioning in adult life, and (g) differences in perspective between the adult ex-pupils and their parents. Across the adult ex-pupils and their parents, the perceived reported benefits of early intervention, parental support, specialist educational provision, and guidance at times of transitions should inform current service provision for this vulnerable group of individuals and their families.

Developing a Web Platform to Support a Community of Practice: A Mixed Methods Study in Pediatric Physiotherapy.

PubMed

Pratte, Gabrielle; Hurtubise, Karen; Rivard, Lisa; Berbari, Jade; Camden, Chantal

2018-01-01

Web platforms are increasingly used to support virtual interactions between members of communities of practice (CoP). However, little is known about how to develop these platforms to support the implementation of best practices for health care professionals. The aim of this article is to explore pediatric physiotherapists' (PTs) perspectives regarding the utility and usability of the characteristic of a web platform developed to support virtual communities of practice (vCoP). This study adopted an explanatory sequential mixed methods design. A web platform supporting the interactions of vCoP members was developed for PTs working with children with developmental coordination disorder. Specific strategies and features were created to support the effectiveness of the platform across three domains: social, information-quality, and system-quality factors. Quantitative data were collected from a cross-sectional survey (n = 41) after 5 months of access to the web platform. Descriptive statistics were calculated. Qualitative data were also collected from semistructured interviews (n = 9), which were coded, interpreted, and analyzed by using Boucher's Web Ergonomics Conceptual Framework. The utility of web platform characteristics targeting the three key domain factors were generally perceived positively by PTs. However, web platform usability issues were noted by PTs, including problems with navigation and information retrieval. Web platform aiming to support vCoP should be carefully developed to target potential users' needs. Whenever possible, users should co-construct the web platform with vCoP developers. Moreover, each of the developed characteristics (eg, newsletter, search function) should be evaluated in terms of utility and usability for the users.

Prospects for Health Care Reform.

ERIC Educational Resources Information Center

Kastner, Theodore

1992-01-01

This editorial reviews areas of health care reform including managed health care, diagnosis-related groups, and the Resource-Based Relative Value Scale for physician services. Relevance of such reforms to people with developmental disabilities is considered. Much needed insurance reform is not thought to be likely, however. (DB)

Caring for a Person Who Has Intellectual or Developmental Disabilities

MedlinePlus

... Childbirth Women Men Seniors Your Health Resources Healthcare Management End-of-Life Issues Insurance & Bills Self Care Working With Your Doctor ... Childbirth Women Men Seniors Your Health Resources Healthcare Management End-of-Life Issues Insurance & Bills Self Care Working With Your Doctor ...

Developmental instability of gynodioecious Teucrium lusitanicum

USGS Publications Warehouse

Alados, C.L.; Navarro, T.; Cabezudo, B.; Emlen, J.M.; Freeman, C.

1998-01-01

Developmental instability was assessed in two geographical races of Teucrium lusitanicum using morphometric measures of vegetative and reproductive structures. T. lusitanicum is a gynodioecious species. Male sterile (female) individuals showed greater developmental instability at all sites. Plants located inland had higher developmental instability of vegetative characters and lower developmental instability of reproductive characters than coastal plants. These results support the contentions that (1) developmental instability is affected more by the disruption of co-adapted gene complexes than by lower heterozygosity, and (2) different habitat characteristics result in the differential response of vegetative and reproductive structures.

Family caregiver distress with children having rare genetic disorders: a qualitative study involving Russell-Silver Syndrome in Taiwan.

PubMed

Weng, Hsin-Ju; Niu, Dau-Ming; Turale, Sue; Tsao, Lee-Ing; Shih, Fu-Jong; Yamamoto-Mitani, Noriko; Chang, Chun-Chi; Shih, Fu-Jin

2012-01-01

To extend nursing knowledge of distress experienced by family caregivers of children with rare genetic disorders, by exploring the perspectives of caregivers of children with Russell-Silver Syndrome in Taiwan. Caring for a child with a rare genetic disorder often has profound effects on families, especially when diagnosis and treatment is complex or not yet well developed, such as that in Russell-Silver Syndrome (or Silver-Russell syndrome). This disorder causes dwarfism and developmental difficulties, requiring long-term care planning. Previous research has focused mostly on medical care, but little is known about families' perspectives of caring difficulties, the help they need and nursing care required. An exploratory qualitative approach was used to inform this study. Family caregivers, whose children were undergoing medical care in a leading Taiwan medical centre, were invited to participate in face-to-face, in-depth interviews. Data were analysed by content analysis. Fifteen caregivers including 11 mothers, two fathers and two grandmothers participated. Five major themes and 13 sub-themes of care-giving distress were identified: endless psychological worries; the lengthy process to confirm a medical diagnosis; adjustment efforts in modifying family roles; dilemmas in deciding between Western or Chinese traditional medicine; and negative responses to society's concerns. Their primary sources of support were spouses, parents and health professionals, accordingly. Complex physio-psycho-social and decision-making distress in caring for children with a rare genetic disorder were systematically revealed from the perspectives of ethnic-Chinese family caregivers. Long-term care plans for children with a rare genetic disorder such as Russell-Silver Syndrome need to focus on positive dynamic family interactions, life-stage development and family caregiver support. Research on care-giving in rare genetic disorders is also warranted across cultures and countries to develop a substantial knowledge basis for nursing practice. © 2011 Blackwell Publishing Ltd.

Self-Directed Workplace Literacy Distance Learning for Developmental Disabilities Workers. Final Report.

ERIC Educational Resources Information Center

Denny, Verna Haskins

The Self-Directed Workplace Literacy Distance Learning Project demonstrated a model workplace literacy program that helped direct care workers in state-operated developmental disabilities facilities improve their literacy skills for a changing workplace. During the project, 268 New York State Office of Mental Retardation and Developmental…

Autism Developmental Profiles and Cooperation with Oral Health Screening

ERIC Educational Resources Information Center

Du, Rennan Y.; Yiu, Cynthia C. Y.; Wong, Virginia C. N.; McGrath, Colman P.

2015-01-01

To determine the associations between autism developmental profiles and cooperation with an oral health screening among preschool children with autism spectrum disorders (ASDs). A random sample of Special Child Care Centres registered with the Government Social Welfare Department in Hong Kong was selected (19 out of 37 Centres). All preschool…

Social Routines and Language Play: Developing Communication Responses in Developmentally Delayed Blind Children.

ERIC Educational Resources Information Center

Rogow, Sally M.

1983-01-01

Social routines, which combined nursery rhymes with carefully planned action sequences, were used to help two young developmentally delayed, visually handicapped children acquire communicative responses. Midway through the 3-year project, one child responded to words for objects, people, and actions. (Author/SEW)

Oral Care for Developmentally Disabled Children: The Primary Dentition Stage.

ERIC Educational Resources Information Center

Kenny, David J.; Judd, Peter L.

1988-01-01

Developmental disabilities and chronic illness can impact the oral health of children in the preeruptive and primary dentition stages. The article covers prevention and management of dental caries; gingival changes; trauma to the primary dentition; sucking, swallowing, and mastication; extraorally fed patients; and factitial injuries. Home-care…

Uncovering Health Care Inequalities among Adults with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Ward, Rolanda L.; Nichols, Amanda D.; Freedman, Ruth I.

2010-01-01

Even as attention is drawn to the increasing number of individuals who experience health inequalities in the United States, little is known about the health inequalities experienced by individuals with intellectual and developmental disabilities. Current disability research mainly focuses on physical disabilities. This article discusses the health…

Successful Living: Understanding Californians with Special Developmental Needs.

ERIC Educational Resources Information Center

Singer, George H. S.; Apolloni, Tony

The book defines functional and categorical approaches to needs of developmentally disabled citizens, compares the current with the ideal service delivery system, describes approaches for effective advocacy efforts, and includes a resource guide for Californians. Seven functional definitions of such terms as self care, mobility, and capacity for…

Naturalistic Developmental Behavioral Interventions: Empirically Validated Treatments for Autism Spectrum Disorder

ERIC Educational Resources Information Center

Schreibman, Laura; Dawson, Geraldine; Stahmer, Aubyn C.; Landa, Rebecca; Rogers, Sally J.; McGee, Gail G.; Kasari, Connie; Ingersoll, Brooke; Kaiser, Ann P.; Bruinsma, Yvonne; McNerney, Erin; Wetherby, Amy; Halladay, Alycia

2015-01-01

Earlier autism diagnosis, the importance of early intervention, and development of specific interventions for young children have contributed to the emergence of similar, empirically supported, autism interventions that represent the merging of applied behavioral and developmental sciences. "Naturalistic Developmental Behavioral Interventions…

Pediatric palliative care.

PubMed

Chaffee, S

2001-06-01

This article presents a model of integrated palliative care for children with life-limiting illnesses, with emphasis on collaboration of care over time among family, primary care providers, and several other groups of providers. Some of the unique aspects of caring for children related to normal developmental changes and the family unit are considered. Issues related to pain and to specific diseases are also reviewed.

Sequence of Child Care Type and Child Development: What Role Does Peer Exposure Play?

ERIC Educational Resources Information Center

Morrissey, Taryn W.

2010-01-01

Child care arrangements change as children age; in general, hours in home-based child care decrease as hours in center-based settings increase. This sequence of child care type may correspond with children's developmental needs; the small peer groups and low child-adult ratios typical of home-based care may allow for more individual child-adult…

A Self-Help Organization of Family Day Care Mothers as a Means of Quality Control.

ERIC Educational Resources Information Center

Sale, June Solnit

Recognizing that licensing or certification have not been an effective method of supervising or insuring quality of family day care, the largest form of out-of-home, non-relative care of children, this paper describes an alternative way of building more developmental care into family day care homes. The growth and progress of WATCH (Women…

Increasing team skills: an evaluation of program effectiveness.

PubMed

Jacobsen-Webb, M L

1985-11-01

The need for health professionals with caring values and good communication skills is well established. To develop these skills requires building self-esteem, as is supported by the work of Carl Rogers, Maslow, and Jourard, and the development of communication skills, as is supported by Carkhuff. A six-hour developmental program was evaluated using alternate forms of the highly validated Personal Skills Map. The differences in participants' scores showed increases in self-esteem, comfort, and management skills (p less than .00), while aggression (p = .05) and deference (p less than .00) decreased. A longitudinal follow-up of participants showed that 65% continued to use the assessment tool six months to one year later. The program appears to be well suited for service settings, continuing education, and academic settings, and meets the need of a high tech, high touch era of change.

Infant Neurobehavioral Development

PubMed Central

Lester, Barry M.; Miller, Robin J.; Hawes, Katheleen; Salisbury, Amy; Bigsby, Rosemarie; Sullivan, Mary C.; Padbury, James F.

2011-01-01

The trend toward single-room neonatal intensive care units (NICUs) is increasing; however scientific evidence is, at this point, mostly anecdotal. This is a critical time to assess the impact of the single-room NICU on improving medical and neurobehavioral outcomes of the preterm infant. We have developed a theoretical model that may be useful in studying how the change from an open-bay NICU to a single-room NICU could affect infant medical and neurobehavioral outcome. The model identifies mediating factors that are likely to accompany the change to a single-room NICU. These mediating factors include family centered care, developmental care, parenting and family factors, staff behavior and attitudes, and medical practices. Medical outcomes that plan to be measured are sepsis, length of stay, gestational age at discharge, weight gain, illness severity, gestational age at enteral feeding, and necrotizing enterocolitis (NEC). Neurobehavioral outcomes include the NICU Network Neurobehavioral Scale (NNNS) scores, sleep state organization and sleep physiology, infant mother feeding interaction scores, and pain scores. Preliminary findings on the sample of 150 patients in the open-bay NICU showed a “baseline” of effects of family centered care, developmental care, parent satisfaction, maternal depression, and parenting stress on the neurobehavioral outcomes of the newborn. The single-room NICU has the potential to improve the neurobehavioral status of the infant at discharge. Neurobehavioral assessment can assist with early detection and therefore preventative intervention to maximize developmental outcome. We also present an epigenetic model of the potential effects of maternal care on improving infant neurobehavioral status. PMID:21255702

Tailoring peripartum nursing care for women of advanced maternal age.

PubMed

Suplee, Patricia Dunphy; Dawley, Katy; Bloch, Joan Rosen

2007-01-01

Births to women of advanced maternal age have increased dramatically over the last decade in both the United States. The majority of women who deliver their first baby after age 35 are healthy and experience positive birth outcomes. According to current research, primigravidas over 35 tend to be educated consumers. Their physical and psychosocial needs differ from those of the mother in her 20s, due to advanced age and factors related to difficulty conceiving and life circumstances. This paper presents (a) an overview of the possible risks to outcomes of childbearing for women over the age of 35; (b) a discussion of how women of advanced maternal age may differ from younger women related to developmental stage, stress or anxiety or both, decision making, and support systems; and (c) an exploration of tailoring nursing care strategies during the peripartum period specifically for this age cohort.

Launching forward: The integration of behavioral health in primary care as a key strategy for promoting young child wellness.

PubMed

Oppenheim, Jennifer; Stewart, Whitney; Zoubak, Ekaterina; Donato, Ingrid; Huang, Larke; Hudock, William

2016-03-01

In 2008, the Substance Abuse and Mental Health Services Administration (SAMHSA) created a national grant program, Project LAUNCH (Linking Actions for Unmet Needs in Children's Health), to improve behavioral health and developmental outcomes for young children through the incorporation of prevention and wellness promotion practices in key early childhood settings. Project LAUNCH supports states, tribal nations, and territories to improve coordination across early childhood systems and implement 5 core strategies of prevention and promotion. This article focuses on the lessons learned from 1 of the 5 core strategies: integration of behavioral health into primary care for young children. This paper analyzes the experiences of a sample of Project LAUNCH grantees, describing 10 common elements of integration approaches and exploring some of the challenges of promoting health and preventing social, emotional, and behavioral problems at a population level. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

Health care expenditures of overweight and obese U.S. adults with intellectual and developmental disabilities.

PubMed

Li, Henan; Fujiura, Glenn; Magaña, Sandra; Parish, Susan

2018-04-01

U.S. adults with intellectual and developmental disabilities (IDD) have poorer health status and greater risks for being overweight and obese, which are major drivers of health care expenditures in the general population. Health care expenditures and IDD have not been studied using nationally representative samples, and the impact of overweight and obesity have not been examined. Using nationally representative data, we aimed to compare the health care expenditures of not-overweight, overweight and obese U.S. adults with IDD, and calculate model-adjusted expenditures. Pooled data from the 2002-2011 Medical Expenditure Panel Survey linked to National Health Interview Survey (n = 1224) were analyzed. Two-part model regressions were conducted, with covariates being year of survey, age, sex, race/ethnicity, household income status, geographical region, urban/rural, marital status, insurance coverage, perceived health status, and perceived mental health status. Overall, obese adults with intellectual and developmental disabilities had higher expenditures than their non-obese peers. Being obese was associated with an estimated additional $2516 in mean expenditures and $1200 in median expenditures compared with the reference group, who were neither overweight nor obese. Obesity is an important predictor of higher health care costs among community-living adults with IDD Finding effective strategies and interventions to address obesity in this population has great financial and policy significance. Copyright © 2018 Elsevier Ltd. All rights reserved.

Examining the Development and Sexual Behavior of Adolescent Males

PubMed Central

Ott, Mary A.

2010-01-01

A careful examination of young men's sexuality by health professionals in pediatrics, primary care and reproductive health is foundational to adolescent male sexual health and healthy development. Through a review of existing literature, this article provides background and a developmental framework for sexual health services for adolescent boys. The article first defines and provides an overview of adolescent boys’ sexual health, and then discusses developmentally focused research on the following topics: (1) early romantic relationships and the evolution of power and influence within these relationships; (2) developmental “readiness” for sex and curiosity; (3) boys’ need for closeness and intimacy; (4) adopting codes of masculinity; (5) boys’ communicating about sex; and (6) contextual influences from peers, families, and providers. This article concludes by examining the implications of these data for sexual health promotion efforts for adolescent males, including HPV vaccination. PMID:20307842

The Adolescent and Young Adult with Cancer: A Developmental Life Course Perspective.

PubMed

Docherty, Sharron L; Kayle, Mariam; Maslow, Gary R; Santacroce, Sheila Judge

2015-08-01

Using a Life Course Health Development framework, this article summarizes what is known about the impact of cancer and its treatment on the biopsychosocial world of the adolescent and young adult. Published peer reviewed literature, web-based resources, and cancer-related professional organizations' resources. Adolescents and young adults with cancer, between 15 and 29 years of age, have emerged as a distinct group requiring specialized care. The demands of cancer and its treatment are often directly counter to the developmental needs of this age group and often alter those life course experiences that contribute to resilience, thriving, and flourishing. Providing high-quality care to this age group requires a depth of understanding of the complexity of factors that merge to influence the developmental life course. Copyright © 2015 Elsevier Inc. All rights reserved.

Examining the development and sexual behavior of adolescent males.

PubMed

Ott, Mary A

2010-04-01

A careful examination of young men's sexuality by health professionals in pediatrics, primary care, and reproductive health is foundational to adolescent male sexual health and healthy development. Through a review of existing published data, this article provides background and a developmental framework for sexual health services for adolescent boys. The article first defines and provides an overview of adolescent boys' sexual health, and then discusses developmentally focused research on the following topics: (1) early romantic relationships and the evolution of power and influence within these relationships; (2) developmental "readiness" for sex and curiosity; (3) boys' need for closeness and intimacy; (4) adopting codes of masculinity; (5) boys' communicating about sex; and (6) contextual influences from peers, families, and providers. This article concludes by examining the implications of these data for sexual health promotion efforts for adolescent males, including human papillomavirus vaccination.

A Classification of Developmental Activities of Academic Family Medicine Supported by Federal Grants.

ERIC Educational Resources Information Center

Davis, Junius A.; And Others

1991-01-01

Analysis of 61 successful grant applications for the federal Establishment of Departments of Family Medicine grants program identified three dimensions for classifying supported developmental activities: (1) the functional area of the activity; (2) the objectives of the activity; and (3) the strategies to be used to attain the objectives.…

Social Support: A Mediator between Child Maltreatment and Developmental Outcomes

ERIC Educational Resources Information Center

Pepin, Elise N.; Banyard, Victoria L.

2006-01-01

The purpose of the current study was to investigate the relationship between child maltreatment, social support, and developmental outcomes in first-year college students. Participants were 202 undergraduate students (137 female, 65 male) who completed surveys at two time points: once before entering college and once during their first year of…

Informing and Equipping Parents of People with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Gilson, Cathy B.; Bethun, Lauren K.; Carter, Erik W.; McMillan, Elise D.

2017-01-01

The importance of supporting families with members who have intellectual and developmental disabilities (IDD) is well established in both policy and research. Yet little is known about how familiar parents are with existing resources (e.g., programs, supports, trainings), what information they would consider most helpful, and how they would prefer…

Health Insurance Coverage of Direct Support Workers in the Developmental Disabilities Field

ERIC Educational Resources Information Center

Ebenstein, William

2006-01-01

There is mounting evidence that employer-provided health insurance is an important factor in recruiting and retaining a competent and motivated direct support workforce within health and human services occupations. A review of the literature in this area, including new information related to the developmental disabilities field, is presented to…

"Not just little adults": qualitative methods to support the development of pediatric patient-reported outcomes.

PubMed

Arbuckle, Rob; Abetz-Webb, Linda

2013-01-01

The US FDA and the European Medicines Agency (EMA) have issued incentives and laws mandating clinical research in pediatrics. While guidances for the development and validation of patient-reported outcomes (PROs) or health-related quality of life (HRQL) measures have been issued by these agencies, little attention has focused on pediatric PRO development methods. With reference to the literature, this article provides an overview of specific considerations that should be made with regard to the development of pediatric PRO measures, with a focus on performing qualitative research to ensure content validity. Throughout the questionnaire development process it is critical to use developmentally appropriate language and techniques to ensure outcomes have content validity, and will be reliable and valid within narrow age bands (0-2, 3-5, 6-8, 9-11, 12-14, 15-17 years). For qualitative research, sample sizes within those age bands must be adequate to demonstrate saturation while taking into account children's rapid growth and development. Interview methods, interview guides, and length of interview must all take developmental stage into account. Drawings, play-doh, or props can be used to engage the child. Care needs to be taken during cognitive debriefing, where repeated questioning can lead a child to change their answers, due to thinking their answer is incorrect. For the PROs themselves, the greatest challenge is in measuring outcomes in children aged 5-8 years. In this age range, while self-report is generally more valid, parent reports of observable behaviors are generally more reliable. As such, 'team completion' or a parent-administered child report is often the best option for children aged 5-8 years. For infants and very young children (aged 0-4 years), patient rating of observable behaviors is necessary, and, for adolescents and children aged 9 years and older, self-reported outcomes are generally valid and reliable. In conclusion, the development of PRO measures for use in children requires careful tailoring of qualitative methods, and performing research within narrow age bands. The best reporter should be carefully considered dependent on the child's age, developmental ability, and the concept being measured, and team completion should be considered alongside self-completion and observer measures.

Care Reasoning Development and Family Socialisation Patterns in Later Adolescence: A Longitudinal Analysis

ERIC Educational Resources Information Center

Pratt, Michael W.; Skoe, Eva E.; Arnold, Mary Louise

2004-01-01

Over the past 20 years, care reasoning has been increasingly recognised as an important aspect of moral development. Skoe has developed an interview measure of levels of care reasoning about the needs of self and other in relationships, the Ethic of Care Interview or ECI. In the present longitudinal research, we investigated developmental changes…

Respite Care: A Survey of State Regulations and Family Options.

ERIC Educational Resources Information Center

Upshur, Carole C.

The findings of a 1978 project of the Massachusetts Developmental Disabilities Council on the need for respite care services and the various models for delivery of respite care are reported. Methodology included review of respite care regulations in 12 states, site visits and a survey of Massachusetts programs, and a survey of 339 families with…

Diversity, Child Care Quality and Developmental Outcomes. FPG Snapshot, #21

ERIC Educational Resources Information Center

FPG Child Development Institute, University of North Carolina, 2004

2004-01-01

It is widely accepted that high quality child care enhances children's cognitive and social development, but some people question if what constitutes quality care depends on the child's ethnic and cultural background. To examine this issue, secondary analysis of the two largest U.S. studies of child care--the Cost, Quality, and Outcomes Study and…

The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy

PubMed Central

Tartaglia, Nicole; Howell, Susan; Wilson, Rebecca; Janusz, Jennifer; Boada, Richard; Martin, Sydney; Frazier, Jacqueline B; Pfeiffer, Michelle; Regan, Karen; McSwegin, Sarah; Zeitler, Philip

2015-01-01

Purpose Individuals with sex chromosome aneuploidies (SCAs) are born with an atypical number of X and/or Y chromosomes, and present with a range of medical, developmental, educational, behavioral, and psychological concerns. Rates of SCA diagnoses in infants and children are increasing, and there is a need for specialized interdisciplinary care to address associated risks. The eXtraordinarY Kids Clinic was established to provide comprehensive and experienced care for children and adolescents with SCA, with an interdisciplinary team composed of developmental–behavioral pediatrics, endocrinology, genetic counseling, child psychology, pediatric neuropsychology, speech–language pathology, occupational therapy, nursing, and social work. The clinic model includes an interdisciplinary approach to care, where assessment results by each discipline are integrated to develop unified diagnostic impressions and treatment plans individualized for each patient. Additional objectives of the eXtraordinarY Kids Clinic program include prenatal genetic counseling, research, education, family support, and advocacy. Methods Satisfaction surveys were distributed to 496 patients, and responses were received from 168 unique patients. Results Satisfaction with the overall clinic visit was ranked as “very satisfied” in 85%, and as “satisfied” in another 9.8%. Results further demonstrate specific benefits from the clinic experience, the importance of a knowledgeable clinic coordinator, and support the need for similar clinics across the country. Three case examples of the interdisciplinary approach to assessment and treatment are included. PMID:26229481

Primary care of adults with intellectual and developmental disabilities

PubMed Central

Sullivan, William F.; Diepstra, Heidi; Heng, John; Ally, Shara; Bradley, Elspeth; Casson, Ian; Hennen, Brian; Kelly, Maureen; Korossy, Marika; McNeil, Karen; Abells, Dara; Amaria, Khush; Boyd, Kerry; Gemmill, Meg; Grier, Elizabeth; Kennie-Kaulbach, Natalie; Ketchell, Mackenzie; Ladouceur, Jessica; Lepp, Amanda; Lunsky, Yona; McMillan, Shirley; Niel, Ullanda; Sacks, Samantha; Shea, Sarah; Stringer, Katherine; Sue, Kyle; Witherbee, Sandra

2018-01-01

Abstract Objective To update the 2011 Canadian guidelines for primary care of adults with intellectual and developmental disabilities (IDD). Methods Family physicians and other health professionals experienced in the care of people with IDD reviewed and synthesized recent empirical, ecosystem, expert, and experiential knowledge. A system was developed to grade the strength of recommendations. Recommendations Adults with IDD are a heterogeneous group of patients and have health conditions and factors affecting their health that can vary in kind, manifestation, severity, or complexity from those of others in the community. They require approaches to care and interventions that are adapted to their needs. These guidelines provide advice regarding standards of care. References to clinical tools and other practical resources are incorporated. The approaches to care that are outlined here can be applied to other groups of patients that have impairments in cognitive, communicative, or other adaptive functioning. Conclusion As primary care providers, family physicians play a vital role in promoting the health and well-being of adults with IDD. These guidelines can aid their decision making with patients and caregivers. PMID:29650602

Using Developmental Evaluation Methods with Communities of Practice

ERIC Educational Resources Information Center

van Winkelen, Christine

2016-01-01

Purpose: This paper aims to explore the use of developmental evaluation methods with community of practice programmes experiencing change or transition to better understand how to target support resources. Design/methodology/approach: The practical use of a number of developmental evaluation methods was explored in three organizations over a…

Three Accelerated Developmental Education Programs: Features, Student Outcomes, and Implications

ERIC Educational Resources Information Center

Jaggars, Shanna Smith; Hodara, Michelle; Cho, Sung-Woo; Xu, Di

2015-01-01

To support the long-term success of underprepared students, many community colleges are experimenting with accelerated developmental education models, which allow students to complete remediation and enroll in college-level math and English within a shorter time frame. This study examines three developmental acceleration programs, including two in…

Developmental Advising for Marginalized Community College Students: An Action Research Study

ERIC Educational Resources Information Center

Jones, Terrica S.

2013-01-01

The purpose of this action research study was to understand, evaluate, and improve the developmental advising practices used at a Washington State community college. This action research study endeavored to strengthen the developmental advising model originally designed to support the college's marginalized students. Guiding questions for the…

West Virginia Association for Developmental Education Annual Report, February 2001.

ERIC Educational Resources Information Center

Parks, Nancy W.

This report discusses the state of developmental education in West Virginia from the perspectives of faculty, staff, and administrators throughout the state. It begins by defining developmental education as more than just "remedial" education and relying on faculty, focused coursework, and peer and professional support to help students…

The Effectiveness of Tutoring on Developmental English Grades

ERIC Educational Resources Information Center

Vick, Nicholas; Robles-Piña, Rebecca A.; Martirosyan, Nara M.; Kite, Valerie

2015-01-01

Tutoring is an important form of academic support for developmental education students. A comparison study was conducted to investigate the benefits of tutoring on the final grades for developmental English students who participated in tutoring versus those students who did not. The final grades for three consecutive semesters were analyzed to…

Developmentally Appropriate Gardening for Young Children.

ERIC Educational Resources Information Center

Stoecklin, Vicki L.

Noting that the recent interest in gardening with young children has resulted in a variety of programs but little support to teachers or horticulturists on how to understand the developmental needs of children and how to adapt gardening activities to those needs, this paper presents principles and goals of developmentally appropriate gardening.…

A Developmental Toxicity Database to Support Computational Toxicology; A Collaborative Project for Data Sharing and Harmonization

EPA Science Inventory

Developmental toxicity is one of the most important non-cancer endpoints for both environmental and human health. Despite the fact that numerous developmental studies are being conducted, as required for regulatory decisions, there are not yet sufficient data available to develop...

Assessment of Children's Digital Courseware in Light of Developmentally Appropriate Courseware Criteria

ERIC Educational Resources Information Center

Ihmeideh, Fathi Mahmoud

2015-01-01

Developmentally appropriate courseware can play a crucial role in enhancing children's learning and development. Research studies have demonstrated that early childhood educators face major challenges in selecting and updating developmental courseware that supports young children's development. The primary purpose of this study was to assess…

Caring: Information for Family Day-Care Providers.

ERIC Educational Resources Information Center

California Univ., Berkeley. Cooperative Extension Service.

This series of leaflets provides information for family day care providers on nine topics. Age differences and developmental stages are emphasized. The first topic concerns ways to help young children get along with others. Self-esteem is emphasized, and methods for helping children develop self-esteem are listed. The second leaflet discusses…

Focus on Preschool Aquatics: Child Care Regulations.

ERIC Educational Resources Information Center

Sayre, Nancy E.

This paper proposes state regulations for the training of child care staff members in developmentally appropriate safe aquatic practices, outlines required features of any pools that children visit, and suggests safe practices for water-related activities at child care centers and swimming pools. The staff training regulation suggestions include…

Keeping the Care in Secure Care

ERIC Educational Resources Information Center

Cunningham, James; Hood, Terry

2011-01-01

A secure setting creates a physical perimeter that prevents youth from leaving, which can provide safety for certain troubled youth. But in this totally closed environment, staff bear major responsibility for meeting a youth's developmental needs, a role normally fulfilled by parents. Secure settings often compromise goals of care when safety…

The Ecology of Infant Day Care.

ERIC Educational Resources Information Center

Elardo, Richard

This paper explores some of the attributed of quality day care programs for infants, age 0 to 30 months. High-quality interactions with adults result in positive developmental outcomes for infants. Adults involved in day care should focus on providing an environment of stimulating experiences, which help infants to develop satisfactorily. Other…

School Engagement and Positive Youth Development: A Relational Developmental Systems Perspective

ERIC Educational Resources Information Center

Li, Yibing; Agans, Jennifer P.; Chase, Paul A.; Arbeit, Miriam R.; Weiner, Michelle B.; Lerner, Richard M.

2014-01-01

This chapter explains the links between relational developmental systems theory and the strength-based, positive youth development (PYD) perspective. The Five Cs model of PYD (involving competence, confidence, connection, character, and caring) is used to assess the role of school engagement in PYD. [This article originally appeared as NSSE…

Enhancing Children's Acceptance of Diverse Peers: Interaction Patterns in Two Mainstreamed Multicultural Day Care Centers.

ERIC Educational Resources Information Center

Swadener, Elizabeth Blue

For one school year, the classroom and playground social behaviors of normally developing and developmentally delayed children were analyzed for the occurrence of interactions across gender, across race and ethnicity, and across developmental condition. The potential impact of teachers' nonsexist language, and encouragement of interaction among…

Caregiver Strain and Sensory Features in Children with Autism Spectrum Disorder and Other Developmental Disabilities

ERIC Educational Resources Information Center

Kirby, Anne V.; White, Tamira J.; Baranek, Grace T.

2015-01-01

Caring for children with disabilities contributes to increased levels of parent stress or caregiver strain. However, the potential relationship of sensory features to strain among caregivers of children with autism spectrum disorder (ASD) and other developmental disabilities (DD) is unknown. Sensory features include overreactions, underreactions,…

Integrated Employment: If Not Now, When? If Not Us, Who?

ERIC Educational Resources Information Center

Wehman, Paul

2006-01-01

This article is a review of the long-term follow-up study of competitively employed individuals with significant developmental disabilities by Brown, Shiraga, and Kessler (2006). In this report, 50 people with developmental disabilities were followed for 20 years and their work histories carefully chronicled. Notably, all of these individuals were…

Using Administrative Health Data to Identify Individuals with Intellectual and Developmental Disabilities: A Comparison of Algorithms

ERIC Educational Resources Information Center

Lin, E.; Balogh, R.; Cobigo, V.; Ouellette-Kuntz, H.; Wilton, A. S.; Lunsky, Y.

2013-01-01

Background: Individuals with intellectual and developmental disabilities (IDD) experience high rates of physical and mental health problems; yet their health care is often inadequate. Information about their characteristics and health services needs is critical for planning efficient and equitable services. A logical source of such information is…

Social Acceptability of Menstrual-Care Training Methods for Young Women with Developmental Disabilities.

ERIC Educational Resources Information Center

Epps, Susan; And Others

1990-01-01

The acceptability of two different training methods (simulation training using a doll and simulation training on self) for teaching menstrual hygiene skills to young women with developmental disabilities was evaluated in two experiments. Results suggested that opinions about treatment acceptability should be obtained from both professional and…

Introduction: digital games as a context for cognitive development, learning, and developmental research.

PubMed

Blumberg, Fran C; Fisch, Shalom M

2013-01-01

The authors present reasons why developmental psychologists should care about children's and adolescents' digital game play. These reasons may be identified as: a) digital game play is an integral aspect of children's and adolescents' lives; b) digital game play contributes to learning and cognitive development; and c) developmental research has the potential to contribute to effective educational game design. The authors expand on these reasons with the goal of introducing or reintroducing to developmental psychologists a rich and very relevant context in which to examine children's and adolescents' applied cognitive development. Copyright © 2013 Wiley Periodicals, Inc., A Wiley Company.

Caring for juveniles with mental disorders in adult corrections facilities.

PubMed

Wills, Cheryl D

2017-02-01

Although juveniles have developmental, educational, healthcare, and rehabilitation needs that differ from adults, thousands of them have been confined in adult corrections facilities in the past 30 years. This manuscript will review how and why juveniles end up in adult corrections facilities, who they are, their rehabilitative needs, and how they differ from adults in corrections facilities and youths in the juvenile justice system. The importance of providing developmentally-informed mental health services to youths in adult corrections facilities is examined, along with barriers to traditional adolescent psychiatric practice. Recommendations for future directions in adolescent psychiatric care are presented.

Fostering a Developmentally Responsive Middle-to-High School Transition: The Role of Transition Supports

ERIC Educational Resources Information Center

Ellerbrock, Cheryl R.; Denmon, Jennifer; Owens, Ruchelle; Lindstrom, Krista

2015-01-01

This yearlong qualitative multisite case study investigated ways middle and high school transition supports foster a developmentally responsive transition for students. A total of 23 participants engaged in this study, including 4 students, 4 middle school teachers, 13 high school teachers, 1 middle school principal, and 1 high school principal.…

My House Is Covered with Papers! Reflections on a Generation of Active Citizenship. Community Supported Living Series.

ERIC Educational Resources Information Center

O'Brien, Connie Lyle; O'Brien, John

This booklet highlights some of the insights that five mothers of children with developmental disabilities have gained after a generation of working together to improve the lives of people with developmental disabilities in Wisconsin. It discusses civic activism, the critical importance of organized parent support, difficulties in collaborating…

Embedding Language Support in Developmental Mathematics Lessons: Exploring the Value of Design as Professional Development for Community College Mathematics Instructors

ERIC Educational Resources Information Center

Gomez, Kimberley; Gomez, Louis M.; Rodela, Katherine C.; Horton, Emily S.; Cunningham, Jahneille; Ambrocio, Rocio

2015-01-01

Three community college faculty members used improvement science techniques to design, develop, and refine contextualized developmental mathematics lessons, where language and literacy pedagogy and related supports figured prominently in these instructional materials. This article reports on the role that their design experiences played in…

Self-Directed Support: Impact of Hiring Practices on Adults with Intellectual and Developmental Disabilities and Families

ERIC Educational Resources Information Center

Heller, Tamar; Arnold, Catherine K.; van Heumen, Lieke; McBride, Elizabeth L.; Factor, Alan

2012-01-01

The study examined the differential experiences and outcomes for people with intellectual and developmental disabilities and their families receiving self-directed services based on the type of personal support worker hired (parents, siblings, other relatives, friends, and agency staff). The sample consisted of 372 participants in a self-directed…

Health Profile of Aging Family Caregivers Supporting Adults with Intellectual and Developmental Disabilities at Home

ERIC Educational Resources Information Center

Yamaki, Kiyoshi; Hsieh, Kelly; Heller, Tamar

2009-01-01

The health status of 206 female caregivers supporting adults with intellectual and developmental disabilities at home was investigated using objective (i.e., presence of chronic health conditions and activity limitations) and subjective (i.e., self-perceived health status) health measures compared with those of women in the general population in 2…

Mental Retardation and Developmental Disabilities Branch (NICHD) Report to the NACHHD Council.

ERIC Educational Resources Information Center

National Inst. of Child Health and Human Development (NIH), Bethesda, MD. Mental Retardation and Developmental Disabilities Branch.

This report highlights some of the projects supported by the Mental Retardation and Developmental Disabilities (MRDD) Branch of the Center for Research for Mothers and Children at the National Institute of Child Health and Human Development since its last report in January 1997. The MRDD Branch provides support for research, research training,…

Quantitative assessment of developmental levels in overarm throwing using wearable inertial sensing technology.

PubMed

Grimpampi, Eleni; Masci, Ilaria; Pesce, Caterina; Vannozzi, Giuseppe

2016-09-01

Motor proficiency in childhood has been recently recognised as a public health determinant, having a potential impact on the physical activity level and possible sedentary behaviour of the child later in life. Among fundamental motor skills, ballistic skills assessment based on in-field quantitative observations is progressively needed in the motor development community. The aim of this study was to propose an in-field quantitative approach to identify different developmental levels in overarm throwing. Fifty-eight children aged 5-10 years performed an overarm throwing task while wearing three inertial sensors located at the wrist, trunk and pelvis level and were then categorised using a developmental sequence of overarm throwing. A set of biomechanical parameters were defined and analysed using multivariate statistics to evaluate whether they can be used as developmental indicators. Trunk and pelvis angular velocities and time durations before the ball release showed increasing/decreasing trends with increasing developmental level. Significant differences between developmental level pairs were observed for selected biomechanical parameters. The results support the suitability and feasibility of objective developmental measures in ecological learning contexts, suggesting their potential supportiveness to motor learning experiences in educational and youth sports training settings.

Seizure disorders and developmental disorders: impact on life of affected families-a structured interview.

PubMed

Spindler, Ulrike Petra; Hotopp, Lena Charlott; Bach, Vivien Angela; Hornemann, Frauke; Syrbe, Steffen; Andreas, Anna; Merkenschlager, Andreas; Kiess, Wieland; Bernhard, Matthias Karl; Bertsche, Thilo; Neininger, Martina Patrizia; Bertsche, Astrid

2017-08-01

Seizure disorder and developmental disorder are two of the most common chronic disorders in childhood. Data on perceived parental burden and specific effects on daily life is scarce. We performed a structured interview, consecutively talking to all parents of pediatric outpatients of our university hospital diagnosed with seizure or developmental disorder. Three hundred seven parents (of 317 affected children: 53 with seizure disorder, 44 with specific developmental disorder, 35 with learning disorder, 71 with intellectual disability, 15 with seizure + specific developmental disorder, 23 with seizure + learning disorder, 76 with seizure disorder + intellectual disability) were interviewed. Parents of children with both seizure disorder and intellectual disability stated the highest constraints in daily life, regarding friends, hobbies, emotional pressure, occupation, partnership, habitation, and financial burden. Due to diagnosis of seizure or developmental disorder, 155/307 (51%) parents reduced their working hours/stopped working, 62/307 (20%) changed their habitation, and 46/307 (15%) broke up. As judged by parents, 148/317 (47%) children are being discriminated against, even own family/friends and educators are held responsible. Parents perceive changes in their daily life and discrimination of their children due to their children's seizure and developmental disorders. An intellectual disability combined with seizure disorder caused the highest constraint. What is Known: • Seizure and/or developmental disorders of children may adversely influence quality of life for affected parents. • Caring for a child with special health care needs can take complete attention and own parental needs may therefore be difficult to meet. What is New: • Two out of three parents stated changes of their daily life such as quitting work, change of habitation, or breakup of partnership due to their child's diagnosis. • As judged by the parents, one in two children with developmental disorder of any kind is being discriminated against, even teachers and own family are held responsible.

["Are you going to die?" When children and adolescents experience the death of a close one].

PubMed

Röseberg, Franziska

2017-01-01

The illness and death of someone close is a big challenge that affects individuals and the whole system. To understand how children, adolescents and young adults experience the death of a significant other, and more specifically a family member, it is necessary to consider aspects of developmental psychology, the life-cycle phase of the family and the systemic view on the burden and reactions from individuals and the whole system. Palliative care and in particular family-oriented counselling and therapy stabilizes the system. Support of the adult caregiver, facilitating understanding of each other even if there are divergent needs as well as the support of sincere communication are important strategies. Children and adolescents as well as their families are supported to find their coherent way to deal with the imminent death of a close one and to integrate the experience into the biography with maximum mental wellbeing.

24 CFR 891.505 - Definitions.

Code of Federal Regulations, 2010 CFR

2010-04-01

... reservation. Except for intermediate care facilities for the mentally retarded and individuals with related conditions, this term does not include nursing homes, hospitals, intermediate care facilities, or... designed for the physically disabled, developmentally disabled, or chronically mentally ill depending upon...

24 CFR 891.505 - Definitions.

Code of Federal Regulations, 2014 CFR

2014-04-01

... reservation. Except for intermediate care facilities for the mentally retarded and individuals with related conditions, this term does not include nursing homes, hospitals, intermediate care facilities, or... designed for the physically disabled, developmentally disabled, or chronically mentally ill depending upon...

24 CFR 891.505 - Definitions.

Code of Federal Regulations, 2011 CFR

2011-04-01

... reservation. Except for intermediate care facilities for the mentally retarded and individuals with related conditions, this term does not include nursing homes, hospitals, intermediate care facilities, or... designed for the physically disabled, developmentally disabled, or chronically mentally ill depending upon...

24 CFR 891.505 - Definitions.

Code of Federal Regulations, 2012 CFR

2012-04-01

... reservation. Except for intermediate care facilities for the mentally retarded and individuals with related conditions, this term does not include nursing homes, hospitals, intermediate care facilities, or... designed for the physically disabled, developmentally disabled, or chronically mentally ill depending upon...

24 CFR 891.505 - Definitions.

Code of Federal Regulations, 2013 CFR

2013-04-01

... reservation. Except for intermediate care facilities for the mentally retarded and individuals with related conditions, this term does not include nursing homes, hospitals, intermediate care facilities, or... designed for the physically disabled, developmentally disabled, or chronically mentally ill depending upon...

Impact of a Developmental Care Training Course on the Knowledge and Satisfaction of Health Care Professionals in Neonatal Units: A Multicenter Study.

PubMed

Mosqueda-Peña, Rocío; Lora-Pablos, David; Pavón-Muñoz, Abraham; Ureta-Velasco, Noelia; Moral-Pumarega, María Teresa; Pallás-Alonso, Carmen Rosa

2016-04-01

The impact of health-related continuing education courses on knowledge acquisition and clinical practice is infrequently evaluated, despite higher numbers of people enrolling in them. The majority of health care professionals working in neonatal intensive care units (NICUs) have received no training in developmental care (DC). The purpose of this study was to determine whether participation in a theoretical-practical course on DC had an effect on the degree of knowledge possessed by professionals in general terms and with respect to neonatal intensive care. The relationship between course satisfaction and knowledge acquisition was also studied. This was an observational multicenter study conducted in 20 neonatal units in Madrid. A pre- and post-course questionnaire evaluated both knowledge and satisfaction levels regarding the course on DC and the Newborn Individualized Developmental Care and Assessment Program (NIDCAP). We carried out a multivariate linear regression analysis to determine whether there was a correlation between knowledge gained and satisfaction level. A total of 566 professionals participated, with a 99% pre-course and a 90% post-course response rate. The mean rate of correct pre-course answers was 65%, while the mean rate of post-course correct answers was 81% (p < 0.001). Results were similar at all levels of neonatal care (Level I: 64% vs 80%; Level II: 64% vs. 83%; and 65% vs. 81%). Scores on a scale of satisfaction from 1 to 5 were high (averages of above 4 for all lectures and workshops). Pre-course knowledge scores, but not satisfaction, significantly influenced post-course knowledge (β 0.499; p < 0.01). Previous DC knowledge among Madrid health care professionals was similar, regardless of the level of neonatal care. Course attendance significantly improved the rate of correct answers. Although course satisfaction was high, there did not seem to be a correlation between knowledge gained and satisfaction. Copyright © 2016. Published by Elsevier B.V.

Translating Neurodevelopmental Care Policies Into Practice: The Experience of Neonatal ICUs in France—The EPIPAGE-2 Cohort Study

PubMed Central

Coquelin, Anaëlle; Cuttini, Marina; Khoshnood, Babak; Glorieux, Isabelle; Claris, Olivier; Durox, Mélanie; Kaminski, Monique; Ancel, Pierre-Yves; Arnaud, Catherine

2016-01-01

Objectives: To describe the implementation of neurodevelopmental care for newborn preterm infants in neonatal ICUs in France in 2011, analyze changes since 2004, and investigate factors associated with practice. Design: Prospective national cohort study of all births before 32 weeks of gestation. Setting: Twenty-five French regions. Participants: All neonatal ICUs (n = 66); neonates surviving at discharge (n = 3,005). Interventions: None. Measurements and Main Results: Neurodevelopmental care policies and practices were assessed by structured questionnaires. Proportions of neonates initiating kangaroo care during the first week of life and those whose mothers expressed breast milk were measured as neurodevelopmental care practices. Multilevel logistic regression analyses were used to investigate relationships between kangaroo care or breast-feeding practices and unit policies, taking into account potential confounders. Free visiting policies, bed availability for parents, and kangaroo care encouragement significantly improved between 2004 and 2011 but with large variabilities between units. Kangaroo care initiation varied from 39% for neonates in the most restrictive units to 68% in less restrictive ones (p < 0.001). Individual factors associated with kangaroo care initiation were gestational age (odds ratio, 5.79; 95% CI, 4.49–7.48 for babies born at 27–31 wk compared with babies born at 23–26 wk) and, to a lesser extent, single pregnancy, birthweight above the 10th centile, and mother’s employment before pregnancy. At unit level, policies and training in neurodevelopmental care significantly influenced kangaroo care initiation (odds ratio, 3.5; 95% CI, 1.8–7.0 for Newborn Individualized Developmental Care and Assessment Program implementation compared with no training). Breast milk expression by mothers was greater in units with full-time availability professionals trained for breast-feeding support (60% vs 73%; p < 0.0001). Conclusions: Dissemination of neurodevelopmental practices occurred between 2004 and 2011, but large variabilities between units persist. Practices increased in units with supportive policies. Specific neurodevelopmental care training with multifaceted interventions strengthened the implementation of policies. PMID:27518584

Toddler activity intensity during indoor free-play: stand and watch.

PubMed

Fees, Bronwyn S; Fischer, Elexa; Haar, Sherry; Crowe, Linda K

2015-01-01

Movement patterns among toddlers (16-36 months) differ from other early developmental periods; toddlers practice coordination, balance, and control. Toddler care environments may afford repetition of these emerging skills. This study examined intensity and type of movements during free-play indoors in child care among toddlers. A convenience sample (n, 41; mean, 26.5 months) was observed for intensity of physical activity (PA), motor activity type, activity context, and teacher prompts in center-based care using a modified version of the Observational System for Recording Physical Activity for Children-Preschool. The most frequent PA intensity level was sedentary with limb movement. No significant gender differences emerged. Standing, sitting/squatting, and walking were the most frequent activity types. Dominant activity contexts included fine motor manipulative, self-care, and onlooking. Logistic regression results indicated that onlooking significantly decreased the odds of moderate to vigorous PA. Teachers offered few prompts to increase PA. Toddlers demonstrate predominantly sedentary behaviors during free-play. Further observational research across the entire day is warranted to accurately assess intensity and teacher's support for moderate to vigorous PA. Copyright © 2015 Society for Nutrition Education and Behavior. Published by Elsevier Inc. All rights reserved.

Care of adults with developmental disabilities: Effects of a continuing education course for primary care providers.

PubMed

Balogh, Robert; Wood, Jessica; Lunsky, Yona; Isaacs, Barry; Ouellette-Kuntz, Hélène; Sullivan, William

2015-07-01

To evaluate the effects of an interdisciplinary, guideline-based continuing education course on measures related to the care of adults with developmental disabilities (DD). Before-and-after study with a control group. Ontario. Forty-seven primary care providers (physicians, registered nurses, and nurse practitioners). Participants either only received reference material about primary care of people with DD (control group) or participated in a continuing education course on primary care of people with DD in addition to receiving the reference material (intervention group). Participants reported on 5 key measures related to care of adults with DD: frequency of using guidelines, frequency of performing periodic health examinations, frequency of assessing patients who present with behaviour changes, level of comfort while caring for adults with DD, and knowledge of primary care related to adults with DD. Over time, the intervention group showed significant increases in 4 of the 5 key measures of care compared with the control group: the frequency of guideline use (P < .001), frequency of assessment of patients' behaviour change (P = .03), comfort level in caring for people with DD (P = .01), and knowledge of primary care related to adults with DD (P = .01). A continuing education course on primary care of adults with DD is a useful interdisciplinary model to train health professionals who provide primary care services to these patients.

Food Insecurity Among Young Adults With Intellectual and Developmental Disabilities in the United States: Evidence From the National Health Interview Survey.

PubMed

Brucker, Debra L; Nord, Derek

2016-11-01

People with intellectual or developmental disabilities (IDD) face higher levels of poverty than others, which can lead to concerns regarding areas of well-being, such as food security. Young adults with IDD who are, in many cases, transitioning from the system of educational, health care, and income supports of their youth into the adult world may be particularly vulnerable. Using pooled data from the 2011-2014 National Health Interview Survey, we find that young adults with IDD have significantly higher levels of food insecurity than young adults without disabilities, even when controlling for poverty. Young adults with IDD who are living in low-income households are not significantly more likely to participate in the Supplemental Nutrition Assistance Program (SNAP) than young adults without disabilities who are also living in low-income households. Although our results suggest that SNAP is effectively reaching many young adults with IDD in need of nutrition assistance, further research is needed to determine the specific effects of food insecurity and SNAP participation on overall economic and health outcomes for this population.

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 depressive symptoms in primary caregivers of young children with or at risk for developmental delay.

PubMed

Feldman, M; McDonald, L; Serbin, L; Stack, D; Secco, M L; Yu, C T

2007-08-01

Despite extensive research with families raising children with or at risk for developmental delay (DD), it is not clear whether primary caregivers of these children are at increased risk for depressive symptoms. Discrepant findings in the literature may be owing to heterogeneity of child problems. More research is needed on child, parent and family variables that may increase risk for, or resilience to, caregiver depressive symptoms. Some studies have found that parental resources (e.g. social support and coping strategies) may buffer the effects of parental distress, while other studies have highlighted the role of parental self-efficacy. We examined Beck Depression Inventory (BDI) scores in 178 primary caregivers (mainly biological mothers) who had 2-year-old children with or at risk for DD owing to: (a) low birthweight, prematurity or multiple birth (n = 58), (b) other known reasons (e.g. Down syndrome, spina bifida) (n = 67), or (c) unknown reasons (n = 69). We found that 20% (n = 35) of the caregivers scored above the BDI clinical cut-off for depression. Analysis of variance revealed that caregivers with elevated BDI scores had higher child behaviour problem and escape-avoidance coping scores, and lower social support and parent self-efficacy, compared with caregivers without depressive symptoms. Caregivers with children who had DD for unknown reasons had higher BDI scores than caregivers of the other two groups of children. Regression analyses showed that child behaviour problems, escape-avoidance coping strategies and social support predicted caregiver BDI scores, but caregiver self-efficacy only did so when entered independently of social support. Only social support mediated and (marginally) moderated the relationship between child behaviour problems and caregiver depressive symptoms. These findings suggest that early intervention programmes should carefully consider the interaction of child characteristics (e.g. Diagnosis and behaviour problems), caregiver resources (e.g. coping strategies and social support), and parental mental health and mood when planning and tailoring services for families of children with or at risk for DD.