Developmental Disabilities: Effects on Well Siblings

Williams, Phoebe D.; Piamjariyakul, Ubolrat; Graff, J. Carolyn; Stanton, Anne; Guthrie, A; Hafeman, Carol; Williams, Arthur R.

doi:10.3109/01460860903486515

Cited by 38 publications

(32 citation statements)

References 25 publications

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“…Because these therapies are effective in improving a child' s functioning and longterm outcomes, parents exhaust their financial, physical, and emotional resources to provide for their children with special health care needs. [5][6][7][8] In addition to the significant out-of-pocket expense of these therapies, substantial time is spent learning to navigate the service delivery and eligibility system, coordinating care, advocating for coverage with insurance companies, and augmenting therapy with practice at home. 9,10 It is not that parents overlook their other children who are typically developing.…”

Section: Resultsmentioning

confidence: 99%

Assessing Functional Impairment in Siblings Living With Children With Disability

et al. 2013

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WHAT'S KNOWN ON THIS SUBJECT: Previous research on potential deleterious effects of typically developing children growing up in households with children with disability has produced mixed results. Research methods have been cited as a problem in many studies. WHAT THIS STUDY ADDS:This is the largest known empirical study comparing functional impairment in siblings living with a child with disability and siblings residing with children who are typically developing. This study also follows the trajectory of functional impairment across 2 measurement periods. abstract OBJECTIVE: The purpose of this study was to empirically test if siblings of children with disability had higher levels of parent-reported behavioral and emotional functional impairment compared with a peer group of siblings residing with only typically developing children. METHODS:This was a retrospective secondary analysis of data from the Medical Expenditure Panel Survey. We included only households with at least 2 children to ensure sibling relationships. Two groups of siblings were formed: 245 siblings resided in households with a child with disability and 6564 siblings resided in households with typically developing children. Parents responded to questions from the Columbia Impairment Scale to identify functional impairment in their children. RESULTS:On the basis of parent reports and after adjusting for sibling demographic characteristics and household background, siblings of children with disability were more likely than siblings residing with typically developing children to have problems with interpersonal relationships, psychopathological functioning, functioning at school, and use of leisure time (P , .05). The percentage of siblings of children with disability classified with significant functional impairment was 16.0% at the first measurement period and 24.2% at the second (P , .001). For siblings of typically developing children there was a smaller percentage increase from 9.5% to 10.3% (P , .001).CONCLUSIONS: Functional impairment is a key indicator for the need of mental health services and, as such, early assessment and interventions to limit increasing severity and short-to long-term consequences need to be addressed. Health care professionals need to consider a family-based health care approach for families raising children with disability. Pediatrics 2013;132:e476-e483 AUTHORS:

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Section: Resultsmentioning

confidence: 99%

Assessing Functional Impairment in Siblings Living With Children With Disability

et al. 2013

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“…40 Despite these challenges, nearly 40% of parents of children with developmental disabilities report positive outcomes for siblings. 41 Family-based interventions that enrich sibling experiences while minimizing negative consequences are needed.…”

Section: Siblings Of Children With Disabilities Need Supportmentioning

confidence: 99%

Parent-Provider-Community Partnerships: Optimizing Outcomes for Children With Disabilities

Murphy¹,

Carbone²

2011

Pediatrics

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Children with disabilities and their families have multifaceted medical, developmental, educational, and habilitative needs that are best addressed through strong partnerships among parents, providers, and communities. However, traditional health care systems are designed to address acute rather than chronic conditions. Children with disabilities require high-quality medical homes that provide care coordination and transitional care, and their families require social and financial supports. Integrated community systems of care that promote participation of all children are needed. The purpose of this clinical report is to explore the challenges of developing effective communitybased systems of care and to offer suggestions to pediatricians and policy-makers regarding the development of partnerships among children with disabilities, their families, and health care and other providers to maximize health and well-being of these children and their families. Pediatrics 2011;128:795-802 INTRODUCTIONChildren with special health care needs are a group of 10 million US children with a wide variety of conditions, medical needs, and caregiving requirements. 1 However, children with disabilities, a subset of children with special health care needs, tend to have more complex conditions and functional impairments, often with technology dependencies and recurrent hospitalizations. In fact, 6.3% of US children between 5 and 15 years of age have 1 or more disabilities, and approximately 1%, or nearly one-half million children, are unable to care for themselves. 2 Over the past 50 years, the number of children living with disabilities has tripled, largely as the result of health care advances that have allowed the survival of children with conditions that were historically incompatible with life. 3 Children and adolescents have had the highest growth rate of disability of any age group during the past decade. 3 Despite these changing demographics, the current system of health care continues to use an outdated system that emphasizes acute illness and well-child care at the expense of long-term management of chronic conditions and disabilities.Historically, hospital-based or institutional care was the only option for most children with complex medical conditions, technology dependence, and significant behavioral and emotional needs. More recently, social policy has promoted community-based programs that provide care for children with disabilities in their homes and communities. 4

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“…Based on our findings, we offer the following recommendations: PCPP should develop methods to (a) ''translate'' medical information on the CNDD's condition for developing a comprehensive care plan [61], (b) assess the family needs using family needs-assessment screening tools [62], (c) offer guidance on meaningful activities for recreation and healthy life styles for CNDD and their families [63], (d) gain information on and access to complementary and alternative medicine [64,65], (e) provide information on CNDD's condition that supports the development of meaningful individual education plans [66,67], (f) help gain information on and access to evidence-based behavioral interventions [68], (g) assist with outreach and follow-up on community mental health supports to address family stress, depression, domestic violence, or substance abuse [69] or siblings' support [70], (h) assist with financial resources [71] or health insurance for ''behavioral health treatments'' within the Affordable Care Act [72], (i) document medical and non-medical sources of care that are being used for CNDD in the (electronic) health-record [73], and (j) strive for cultural and linguistic competence in communicating and facilitating information pertaining to CNDD's and family's needs [74][75][76].…”

Section: Discussionmentioning

confidence: 99%

Parental Perceptions of Family Centered Care in Medical Homes of Children with Neurodevelopmental Disabilities

Zajicek-Farber

Lotrecchiano

Long

et al. 2015

Matern Child Health J

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Life course theory sets the framework for strong inclusion of family centered care (FCC) in quality medical homes of children with neurodevelopmental disabilities (CNDD). The purpose of this study was to explore the perceptions of families with their experiences of FCC in medical homes for CNDD. Using a structured questionnaire, the Family-Centered Care Self-Assessment Tool developed by Family Voices, this study surveyed 122 parents of CNDD in a large urban area during 2010-2012. Data collected information on FCC in the provision of primary health care services for CNDD and focused on family-provider partnerships, care setting practices and policies, and community services. Frequency analysis classified participants' responses as strengths in the "most of the time" range, and weaknesses in the "never" range. Only 31 % of parents were satisfied with the primary health care their CNDD received. Based on an accepted definition of medical home services, 16 % of parents reported their CNDD had most aspects of a medical home, 64 % had some, and 20 % had none. Strengths in FCC were primarily evident in the family-provider partnership and care settings when focused on meeting the medical care needs of the child. Weaknesses in FCC were noted in meeting the needs of families, coordination, follow-up, and support with community resources. Improvements in key pediatric health care strategies for CNDD are recommended. CNDD and their families have multifaceted needs that require strong partnerships among parents, providers, and communities. Quality medical homes must include FCC and valued partnerships with diverse families and community-based providers.

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Developmental Disabilities: Effects on Well Siblings

Abstract: Contemporary family life in these families, as portrayed by parents' descriptions, reflects need in child health care for more intervention research on this vulnerable population.

Cited by 38 publications

References 25 publications

Assessing Functional Impairment in Siblings Living With Children With Disability

Assessing Functional Impairment in Siblings Living With Children With Disability

Parent-Provider-Community Partnerships: Optimizing Outcomes for Children With Disabilities

Parental Perceptions of Family Centered Care in Medical Homes of Children with Neurodevelopmental Disabilities

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