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Disability in Children and Young Adults: The Unintended Consequences

Disability in Children and Young Adults: The Unintended Consequences Approximately 5.6 million children in the United States have health conditions associated with moderate to severe limitations in self-care activities, and 1.5 million children are limited in their ability to walk, care for themselves, or participate in other activities.1-4 Because there are differing definitions of disability and its severity, national estimates of prevalence vary. However, at least several million children in the United States will never be able to care for themselves. Historically, hospital or institutional care was the only option for these children, but as a result of sociopolitical and health care changes, pervasive nursing shortages, and scarce home care resources, most of the care of children with disabilities is now provided by their parents in their homes.5 Parents are shouldering more caregiving responsibilities that, because of technological advances and increased survival rates, have become increasingly complex and long-term.5,6 National initiatives have suggested that it is preferable for all children with disabilities to be cared for at home rather than in congregate care settings.7 For example, a goal of Healthy People 20108 is to reduce the number of persons 22 years and younger in congregate care settings from 24 300 to zero. Although these initiatives and recommendations may be well intentioned, they have contributed to serious and undesirable consequences for the child, the parents, the family, and health care systems. Analogous to Russian nesting dolls, children with disabilities do not live in isolation but are embraced by their parental caregivers, who function within family units, which are, in turn, nested in communities and ultimately local and national health care systems. The complex and dynamic interactions among the developing child, the family, the community, and society have been described by Bronfenbrenner9 as the ecologic systems theory of child development. Characteristics of the caregiver and child, their shared history, and the social, economic, and cultural contexts in which they find themselves combine to create a variety of circumstances.6 With reference to Bronfenbrenner's social ecologic framework, we explore the multifaceted and dynamic interdependencies among children with the full spectrum of childhood physical, mental, and emotional disabilities and their parental caregivers, families, communities, and health care systems.9 In this commentary, we describe some of the unintended consequences of eliminating congregate care from this framework and raise questions regarding public health and research priorities. A thorough understanding of the known and potential consequences will better prepare us to address the long-term needs of children with disabilities and their families through the provision of appropriate resources and interventions. The experience of caregiving Providing long-term care for a child with a disability requires extraordinary personal, physical, emotional, social, and financial resources. In addition to being responsible for the physical care of their child, parents must coordinate their child's numerous and multifaceted medical, educational, and developmental interventions while balancing competing family needs.10 The informal caregiving role is typically an unexpected one and is not accompanied by the financial, educational, personal, and social benefits that are associated with formal caregiving or other chosen careers.6 Formal caregivers return home at the end of their shifts, but informal caregivers render care 24 hours per day, 7 days per week—not as a chosen occupation but within the context of love, duty, and lifelong obligation.11 Families are the primary agents for promoting child health, health beliefs, knowledge, and behaviors. Managing the child's chronic illness and disability at home can create additional stress and burdens related to providing the child's daily care, coordinating health care, and interfacing with schools, government agencies, and other systems in the child's environment.12 Families adapt to disability by reframing perspectives about family health and learning to balance caregiving demands with the demands of everyday life.13 How well these families function is intimately related to feelings of caregiver well-being that may, in turn, affect child outcomes.6 However, for some parents the responsibilities of caregiving may become overwhelming. Unintended consequences Caregiver Health and Well-being There is considerable evidence that caregivers of children with disabilities experience negative physical, emotional, and functional health consequences, which ultimately threaten their ability to provide long-term care for their children.14 Parents of children with cerebral palsy have more chronic physical conditions, including back pain, migraine headaches, and gastrointestinal ulcers, and higher overall distress compared with other parents.15 More than 70% of mothers of children with physical disabilities report low back pain.16 Caregivers of technology-dependent children report high levels of anxiety, emotional distress, social isolation, and sleep deprivation.17 Caregivers of children with disabilities feel undervalued, overwhelmed, and less healthy because of the time, family, and self-care costs of caregiving.18 Moreover, caregivers who report poorer physical and mental health spend the most hours in caregiving tasks, expend more of their own funds, use more respite and special education services, and care for children who are older or of higher medical complexity.14,19 Siblings of children with disabilities may also be affected, often performing more household activities and participating in fewer school and social activities than other children.20 Hospitalizations and Out-of-Home Placements If caregiver health and well-being are impaired, there may be negative consequences for the child, although to our knowledge the relationship between caregiver function and child outcomes has not been formally studied. However, indirect evidence suggests that adverse child outcomes, such as out-of-home placements and hospitalizations, are associated with caregiver factors.14 Children with disabilities are 3.4 times more likely to be maltreated than other children,21 a risk that may be attributable to high emotional, physical, economic, and social demands on families; limited social and community supports; and lack of respite care.22 Moreover, once placed into the foster care system, children with disabilities are less likely to reunite with their families and more likely to reside with non-kin foster care 2 years later than typical children.23 Thirty percent of recurrent hospitalizations for Australian children with chronic illnesses are related to a lack of respite services and community support, and 26% are related to psychological or medical issues affecting other family members.24 Comparable studies in the United States are lacking. Day-to-day stress seems to be the strongest reason that parents opt for out-of-home placements for their children with severe disabilities.18 Although 75% of families of children with disabilities indicate that they do not want out-of-home placements for their children, the responsibilities of caregiving and competing family demands continue to force such decisions.25 The relationship between the physical and psychological burdens resulting from providing long-term care for a child with a severe disability and the effectiveness of parental caregivers is an area of much-needed research, as is the relationship between caregiver effectiveness and child outcomes. Financial Impacts Children with disabilities have much higher health care expenditures compared with typical children ($2669 vs $676 in 1999-2000).4 Home care costs are 70% less than hospital costs for children dependent on technology, suggesting that home care seems to be a less expensive alternative.26 However, this finding is a result of cost shifting rather than cost saving. Families of children with disabilities typically experience lost wages due to the need to leave formal employment at a time when they also bear large out-of-pocket expenses. For example, one-third of mothers caring for children assisted by technology quit working to care for their child at home while at the same time facing a 20-fold increase in uncompensated health care expenditures.27 In the home, parents substitute for nurses and other formal caregivers without compensation.11 In 1999-2000, out-of-pocket expenditures were 50% higher for children with disabilities than for other children, a financial burden unevenly shared by US families.4 Families raising children with disabilities have a lower median income than other families and are more likely to live in poverty.28 Overall, raising a child with a disability has major economic consequences for the family by increasing expenses and decreasing income. Implications Care that is family centered and coordinated has been shown to reduce parental stress and decrease hospitalizations.29,30 Strong health care partnerships between families of children with disabilities and their health care professionals are associated with fewer unmet child and family needs, improved access to specialty care, and increased satisfaction with care.31 However, the provision of coordinated care requires medical expertise, familiarity with available resources, awareness of the needs and preferences of individual families, and collaborative relationships with numerous professionals. Care coordination for children is often complicated by the lack of a single point of entry into multiple systems of care, the availability of funding and services among public and private payers, and economic, psychosocial, and cultural barriers. Family-centered, coordinated, and community-based health care options for children with disabilities and their families must be developed and implemented. The alternative is compromised health, function, and quality of life for children with disabilities and their families and national health care policies that remain focused on crisis-driven interventions. A goal of Healthy People 2010 is to reduce the number of children in congregate care settings to zero, and the numbers have indeed decreased, from 90 942 in 1977 to 26 000 in 1997.32 However, there were still 26 395 children in residential settings in 2005, suggesting that the initial reduction has slowed if not ended.32 The literature and our clinical experience suggest that there is a subset of children with disabilities who, because of high medical complexity, diminished family resources, or a combination of factors, cannot be safely and effectively cared for at home. Therefore, we believe that the goal of eliminating congregate care from the range of services available to families of children with disabilities is ill advised. However, congregate care programs do require modifications from the way they currently function. Provision of reliable and appropriate respite care is associated with reduced levels of parental stress, but caregivers often lack trust in the quality of care available. Short-term transitional care programs can provide high-quality respite care that will promote caregiver health and well-being. Blended models of care, with frequent and easy transitions between home and congregate care centers, might offer a reasonable compromise between current all-or-nothing models of care based on the one-size-fits-all assumption. Effective health care systems should allow for the support and care of each child and family, according to their individual and combined needs and preferences. Conclusions Increasing survival rates for children with disabilities; national efforts to promote home-based, family-centered care for all children; and national goals to reduce the number of children with disabilities in congregate care to zero have all contributed to an increased need for parents to assume careers as informal caregivers. The unintended consequences of disability in US children are substantial for the children themselves, their parental caregivers, their families, and health care systems. Current health care systems set caregiving expectations but do not address caregiver needs. Because informal caregiving responsibilities typically span the course of a child's life and often extend into adulthood, the types of services needed to sustain informal caregivers across time will determine the success of community-based and family-centered initiatives for children with disabilities. An innovative exploration of these issues will ultimately provide a way to avoid breakdown of this system through the development of targeted interventions intended to improve caregiver and child function and support the achievement of national health care goals. Similar to the Russian dolls, children with disabilities, their parental caregivers, their families, and health care systems are interdependent. Thus, it would be counterproductive and misleading to study them in isolation. As the responsibility of caregiving shifts from formal to informal caregivers, research designed to capture these complex interrelationships must be a national priority. Only then will we be able to address the long-term unintended consequences of childhood disability. Correspondence: Dr Murphy, School of Medicine, University of Utah, 50 N Medical Dr, 2A200 SOM, Salt Lake City, UT 84132-2201 (nancy.murphy@hsc.utah.edu). Financial Disclosure: None reported. Additional Contributions: Paul Young, MD, Deirdre Caplin, PhD, and Carole Stipleman, MD, at the Department of Pediatrics, University of Utah, contributed to this work. No compensation was given for their input. References 1. Forum on Child and Family Statistics, America's children: key national indicators of well-being 2005: activity limitation. http://www.childstats.gov/amchildren05/hea2.aspAccessed May 5, 2007 2. Data Resource Center for Child and Adolescent Health, 2001 National survey of children with special health care needs. http://www.cshcndata.orgAccessed April 20, 2007 3. Data Resource Center for Child and Adolescent Health, National survey of children's health. http://nschdata.org/DataQuery/DataQueryResults.aspxAccessed April 20, 2007 4. Newacheck PWInkelas MKim SE Health services use and health care expenditures for children with disabilities. Pediatrics 2004;114 (1) 79- 85PubMedGoogle ScholarCrossref 5. McPherson MWeissman GStrickland BBvan Dyck PCBlumberg SJNewacheck PW Implementing community-based systems of services for children and youths with special health care needs: how well are we doing? Pediatrics 2004;113 (5) (suppl)1538- 1544PubMedGoogle Scholar 6. Raina PO'Donnell MSchwellnus H et al. Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr 2004;4 (1) 1- 13PubMedGoogle ScholarCrossref 7. Johnson CPKastner TA Helping families raise children with special health care needs at home. Pediatrics 2005;115 (2) 507- 511PubMedGoogle ScholarCrossref 8. Office of Disease Prevention and Health Promotion; Office of Public Health and Science, Office of the Secretary, US Department of Health and Human Services, Healthy people. http://www.healthypeople.govAccessed November 1, 2006 9. Bronfenbrenner U Ecology of the family as a context for human development. Dev Psychol 1986;22723- 742Google ScholarCrossref 10. Silver EJWestbrook LEStein RE Relationship of parental psychological distress to consequences of chronic health conditions in children. J Pediatr Psychol 1998;23 (1) 5- 15PubMedGoogle ScholarCrossref 11. Kirk SGlendinning CCallery P Parent or nurse? the experience of being the parent of a technology-dependent child. J Adv Nurs 2005;51 (5) 456- 464PubMedGoogle ScholarCrossref 12. Christian BJVaughn-Cole BedJohnson MAedMalone JAedWalker BLed Home care for the child and adolescent with chronic illness. Family Nursing Practice. Philadelphia, PA WB Saunders Co1998;128- 148Google Scholar 13. Christian BJFunk SG, Tournquist EM, Champagne MT, Weisse RA, eds.ed Quality of life and family relationships in families coping with their child's chronic illness. Key Aspects of Caring for the Chronically Ill: Hospital and Home. New York, NY Springer Publishing Co1993;304- 312Google Scholar 14. Raina PO'Donnell MRosenbaum P et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005;115 (6) e626- e636PubMedGoogle ScholarCrossref 15. Brehaut JCKohen DERaina P et al. The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics 2004;114 (2) e182- e191PubMedGoogle ScholarCrossref 16. Tong HCHaig AJNelson VSYamakawa KSKandala GShin KY Low back pain in adult female caregivers of children with physical disabilities. Arch Pediatr Adolesc Med 2003;157 (11) 1128- 1133PubMedGoogle ScholarCrossref 17. Wang KWBarnard A Technology-dependent children and their families: a review. J Adv Nurs 2004;45 (1) 36- 46PubMedGoogle ScholarCrossref 18. Murphy NAChristian BCaplin DAYoung PC The health of caregivers for children with disabilities: caregiver perspectives. Child Care Health Dev 2007;33 (2) 180- 187PubMedGoogle ScholarCrossref 19. Leonard BJJohnson ALBrust JD Caregivers of children with disabilities: a comparison of those managing “OK” and those needing more help. Child Health Care 1993;22 (2) 93- 105PubMedGoogle ScholarCrossref 20. Williams PDLorenzo FDBorja M Pediatric chronic illness: effects on siblings and mothers. Matern Child Nurs J 1993;21 (4) 111- 121PubMedGoogle Scholar 21. Sullivan PMKnutson JF Maltreatment and disabilities: a population-based epidemiological study. Child Abuse Negl 2000;24 (10) 1257- 1273PubMedGoogle ScholarCrossref 22. Hibbard RADesch LW Maltreatment of children with disabilities. Pediatrics 2007;119 (5) 1018- 1025PubMedGoogle ScholarCrossref 23. Romney SCLitrownik AJNewton RRLau A The relationship between child disability and living arrangement in child welfare. Child Welfare 2006;85 (6) 965- 984PubMedGoogle Scholar 24. Kelly AFHewson PH Factors associated with recurrent hospitalization in chronically ill children and adolescents. J Paediatr Child Health 2000;36 (1) 13- 18PubMedGoogle ScholarCrossref 25. Llewellyn GDunn PFante MTurnbull LGrace R Family factors influencing out-of-home placement decisions. J Intellect Disabil Res 1999;43 (pt 3) 219- 233PubMedGoogle ScholarCrossref 26. Balinsky W Pediatric home care: reimbursement and cost benefit analysis. J Pediatr Health Care 1999;13 (6 pt 1) 288- 294PubMedGoogle ScholarCrossref 27. Thyen UKuhlthau KPerrin JM Employment, child care, and mental health of mothers caring for children assisted by technology. Pediatrics 1999;103 (6 pt 1) 1235- 1242PubMedGoogle ScholarCrossref 28. Wang Q Disability and American Families: 2000. Washington, DC US Census Bureau Department of Commerce2005; 29. King GKing SRosenbaum PGoffin R Family-centered caregiving and well-being of parents of children with disabilities: linking process with outcome. J Pediatr Psychol 1999;24 (1) 41- 53Google ScholarCrossref 30. Damiano PCMomany ETTyler MCPenziner AJLobas JG Cost of outpatient medical care for children and youth with special health care needs: investigating the impact of the medical home. Pediatrics 2006;118 (4) e1187- e1194PubMedGoogle ScholarCrossref 31. Denboba DMcPherson MGKenney MKStrickland BNewacheck PW Achieving family and provider partnerships for children with special health care needs. Pediatrics 2006;118 (4) 1607- 1615PubMedGoogle ScholarCrossref 32. Prouty RLakin KCCoucouvanis KAnderson L Progress toward a national objective of healthy people 2010: “reduce to zero the number of children 17 years and younger living in congregate care.” Ment Retard 2005;43 (6) 456- 460PubMedGoogle ScholarCrossref http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Archives of Pediatrics & Adolescent Medicine American Medical Association

Disability in Children and Young Adults: The Unintended Consequences

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References (34)

Publisher
American Medical Association
Copyright
Copyright © 2007 American Medical Association. All Rights Reserved.
ISSN
1072-4710
DOI
10.1001/archpedi.161.10.930
pmid
17909134
Publisher site
See Article on Publisher Site

Abstract

Approximately 5.6 million children in the United States have health conditions associated with moderate to severe limitations in self-care activities, and 1.5 million children are limited in their ability to walk, care for themselves, or participate in other activities.1-4 Because there are differing definitions of disability and its severity, national estimates of prevalence vary. However, at least several million children in the United States will never be able to care for themselves. Historically, hospital or institutional care was the only option for these children, but as a result of sociopolitical and health care changes, pervasive nursing shortages, and scarce home care resources, most of the care of children with disabilities is now provided by their parents in their homes.5 Parents are shouldering more caregiving responsibilities that, because of technological advances and increased survival rates, have become increasingly complex and long-term.5,6 National initiatives have suggested that it is preferable for all children with disabilities to be cared for at home rather than in congregate care settings.7 For example, a goal of Healthy People 20108 is to reduce the number of persons 22 years and younger in congregate care settings from 24 300 to zero. Although these initiatives and recommendations may be well intentioned, they have contributed to serious and undesirable consequences for the child, the parents, the family, and health care systems. Analogous to Russian nesting dolls, children with disabilities do not live in isolation but are embraced by their parental caregivers, who function within family units, which are, in turn, nested in communities and ultimately local and national health care systems. The complex and dynamic interactions among the developing child, the family, the community, and society have been described by Bronfenbrenner9 as the ecologic systems theory of child development. Characteristics of the caregiver and child, their shared history, and the social, economic, and cultural contexts in which they find themselves combine to create a variety of circumstances.6 With reference to Bronfenbrenner's social ecologic framework, we explore the multifaceted and dynamic interdependencies among children with the full spectrum of childhood physical, mental, and emotional disabilities and their parental caregivers, families, communities, and health care systems.9 In this commentary, we describe some of the unintended consequences of eliminating congregate care from this framework and raise questions regarding public health and research priorities. A thorough understanding of the known and potential consequences will better prepare us to address the long-term needs of children with disabilities and their families through the provision of appropriate resources and interventions. The experience of caregiving Providing long-term care for a child with a disability requires extraordinary personal, physical, emotional, social, and financial resources. In addition to being responsible for the physical care of their child, parents must coordinate their child's numerous and multifaceted medical, educational, and developmental interventions while balancing competing family needs.10 The informal caregiving role is typically an unexpected one and is not accompanied by the financial, educational, personal, and social benefits that are associated with formal caregiving or other chosen careers.6 Formal caregivers return home at the end of their shifts, but informal caregivers render care 24 hours per day, 7 days per week—not as a chosen occupation but within the context of love, duty, and lifelong obligation.11 Families are the primary agents for promoting child health, health beliefs, knowledge, and behaviors. Managing the child's chronic illness and disability at home can create additional stress and burdens related to providing the child's daily care, coordinating health care, and interfacing with schools, government agencies, and other systems in the child's environment.12 Families adapt to disability by reframing perspectives about family health and learning to balance caregiving demands with the demands of everyday life.13 How well these families function is intimately related to feelings of caregiver well-being that may, in turn, affect child outcomes.6 However, for some parents the responsibilities of caregiving may become overwhelming. Unintended consequences Caregiver Health and Well-being There is considerable evidence that caregivers of children with disabilities experience negative physical, emotional, and functional health consequences, which ultimately threaten their ability to provide long-term care for their children.14 Parents of children with cerebral palsy have more chronic physical conditions, including back pain, migraine headaches, and gastrointestinal ulcers, and higher overall distress compared with other parents.15 More than 70% of mothers of children with physical disabilities report low back pain.16 Caregivers of technology-dependent children report high levels of anxiety, emotional distress, social isolation, and sleep deprivation.17 Caregivers of children with disabilities feel undervalued, overwhelmed, and less healthy because of the time, family, and self-care costs of caregiving.18 Moreover, caregivers who report poorer physical and mental health spend the most hours in caregiving tasks, expend more of their own funds, use more respite and special education services, and care for children who are older or of higher medical complexity.14,19 Siblings of children with disabilities may also be affected, often performing more household activities and participating in fewer school and social activities than other children.20 Hospitalizations and Out-of-Home Placements If caregiver health and well-being are impaired, there may be negative consequences for the child, although to our knowledge the relationship between caregiver function and child outcomes has not been formally studied. However, indirect evidence suggests that adverse child outcomes, such as out-of-home placements and hospitalizations, are associated with caregiver factors.14 Children with disabilities are 3.4 times more likely to be maltreated than other children,21 a risk that may be attributable to high emotional, physical, economic, and social demands on families; limited social and community supports; and lack of respite care.22 Moreover, once placed into the foster care system, children with disabilities are less likely to reunite with their families and more likely to reside with non-kin foster care 2 years later than typical children.23 Thirty percent of recurrent hospitalizations for Australian children with chronic illnesses are related to a lack of respite services and community support, and 26% are related to psychological or medical issues affecting other family members.24 Comparable studies in the United States are lacking. Day-to-day stress seems to be the strongest reason that parents opt for out-of-home placements for their children with severe disabilities.18 Although 75% of families of children with disabilities indicate that they do not want out-of-home placements for their children, the responsibilities of caregiving and competing family demands continue to force such decisions.25 The relationship between the physical and psychological burdens resulting from providing long-term care for a child with a severe disability and the effectiveness of parental caregivers is an area of much-needed research, as is the relationship between caregiver effectiveness and child outcomes. Financial Impacts Children with disabilities have much higher health care expenditures compared with typical children ($2669 vs $676 in 1999-2000).4 Home care costs are 70% less than hospital costs for children dependent on technology, suggesting that home care seems to be a less expensive alternative.26 However, this finding is a result of cost shifting rather than cost saving. Families of children with disabilities typically experience lost wages due to the need to leave formal employment at a time when they also bear large out-of-pocket expenses. For example, one-third of mothers caring for children assisted by technology quit working to care for their child at home while at the same time facing a 20-fold increase in uncompensated health care expenditures.27 In the home, parents substitute for nurses and other formal caregivers without compensation.11 In 1999-2000, out-of-pocket expenditures were 50% higher for children with disabilities than for other children, a financial burden unevenly shared by US families.4 Families raising children with disabilities have a lower median income than other families and are more likely to live in poverty.28 Overall, raising a child with a disability has major economic consequences for the family by increasing expenses and decreasing income. Implications Care that is family centered and coordinated has been shown to reduce parental stress and decrease hospitalizations.29,30 Strong health care partnerships between families of children with disabilities and their health care professionals are associated with fewer unmet child and family needs, improved access to specialty care, and increased satisfaction with care.31 However, the provision of coordinated care requires medical expertise, familiarity with available resources, awareness of the needs and preferences of individual families, and collaborative relationships with numerous professionals. Care coordination for children is often complicated by the lack of a single point of entry into multiple systems of care, the availability of funding and services among public and private payers, and economic, psychosocial, and cultural barriers. Family-centered, coordinated, and community-based health care options for children with disabilities and their families must be developed and implemented. The alternative is compromised health, function, and quality of life for children with disabilities and their families and national health care policies that remain focused on crisis-driven interventions. A goal of Healthy People 2010 is to reduce the number of children in congregate care settings to zero, and the numbers have indeed decreased, from 90 942 in 1977 to 26 000 in 1997.32 However, there were still 26 395 children in residential settings in 2005, suggesting that the initial reduction has slowed if not ended.32 The literature and our clinical experience suggest that there is a subset of children with disabilities who, because of high medical complexity, diminished family resources, or a combination of factors, cannot be safely and effectively cared for at home. Therefore, we believe that the goal of eliminating congregate care from the range of services available to families of children with disabilities is ill advised. However, congregate care programs do require modifications from the way they currently function. Provision of reliable and appropriate respite care is associated with reduced levels of parental stress, but caregivers often lack trust in the quality of care available. Short-term transitional care programs can provide high-quality respite care that will promote caregiver health and well-being. Blended models of care, with frequent and easy transitions between home and congregate care centers, might offer a reasonable compromise between current all-or-nothing models of care based on the one-size-fits-all assumption. Effective health care systems should allow for the support and care of each child and family, according to their individual and combined needs and preferences. Conclusions Increasing survival rates for children with disabilities; national efforts to promote home-based, family-centered care for all children; and national goals to reduce the number of children with disabilities in congregate care to zero have all contributed to an increased need for parents to assume careers as informal caregivers. The unintended consequences of disability in US children are substantial for the children themselves, their parental caregivers, their families, and health care systems. Current health care systems set caregiving expectations but do not address caregiver needs. Because informal caregiving responsibilities typically span the course of a child's life and often extend into adulthood, the types of services needed to sustain informal caregivers across time will determine the success of community-based and family-centered initiatives for children with disabilities. An innovative exploration of these issues will ultimately provide a way to avoid breakdown of this system through the development of targeted interventions intended to improve caregiver and child function and support the achievement of national health care goals. Similar to the Russian dolls, children with disabilities, their parental caregivers, their families, and health care systems are interdependent. Thus, it would be counterproductive and misleading to study them in isolation. As the responsibility of caregiving shifts from formal to informal caregivers, research designed to capture these complex interrelationships must be a national priority. Only then will we be able to address the long-term unintended consequences of childhood disability. Correspondence: Dr Murphy, School of Medicine, University of Utah, 50 N Medical Dr, 2A200 SOM, Salt Lake City, UT 84132-2201 (nancy.murphy@hsc.utah.edu). Financial Disclosure: None reported. Additional Contributions: Paul Young, MD, Deirdre Caplin, PhD, and Carole Stipleman, MD, at the Department of Pediatrics, University of Utah, contributed to this work. No compensation was given for their input. References 1. Forum on Child and Family Statistics, America's children: key national indicators of well-being 2005: activity limitation. http://www.childstats.gov/amchildren05/hea2.aspAccessed May 5, 2007 2. Data Resource Center for Child and Adolescent Health, 2001 National survey of children with special health care needs. http://www.cshcndata.orgAccessed April 20, 2007 3. Data Resource Center for Child and Adolescent Health, National survey of children's health. http://nschdata.org/DataQuery/DataQueryResults.aspxAccessed April 20, 2007 4. Newacheck PWInkelas MKim SE Health services use and health care expenditures for children with disabilities. Pediatrics 2004;114 (1) 79- 85PubMedGoogle ScholarCrossref 5. McPherson MWeissman GStrickland BBvan Dyck PCBlumberg SJNewacheck PW Implementing community-based systems of services for children and youths with special health care needs: how well are we doing? Pediatrics 2004;113 (5) (suppl)1538- 1544PubMedGoogle Scholar 6. Raina PO'Donnell MSchwellnus H et al. Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr 2004;4 (1) 1- 13PubMedGoogle ScholarCrossref 7. Johnson CPKastner TA Helping families raise children with special health care needs at home. Pediatrics 2005;115 (2) 507- 511PubMedGoogle ScholarCrossref 8. Office of Disease Prevention and Health Promotion; Office of Public Health and Science, Office of the Secretary, US Department of Health and Human Services, Healthy people. http://www.healthypeople.govAccessed November 1, 2006 9. Bronfenbrenner U Ecology of the family as a context for human development. Dev Psychol 1986;22723- 742Google ScholarCrossref 10. Silver EJWestbrook LEStein RE Relationship of parental psychological distress to consequences of chronic health conditions in children. J Pediatr Psychol 1998;23 (1) 5- 15PubMedGoogle ScholarCrossref 11. Kirk SGlendinning CCallery P Parent or nurse? the experience of being the parent of a technology-dependent child. J Adv Nurs 2005;51 (5) 456- 464PubMedGoogle ScholarCrossref 12. Christian BJVaughn-Cole BedJohnson MAedMalone JAedWalker BLed Home care for the child and adolescent with chronic illness. Family Nursing Practice. Philadelphia, PA WB Saunders Co1998;128- 148Google Scholar 13. Christian BJFunk SG, Tournquist EM, Champagne MT, Weisse RA, eds.ed Quality of life and family relationships in families coping with their child's chronic illness. Key Aspects of Caring for the Chronically Ill: Hospital and Home. New York, NY Springer Publishing Co1993;304- 312Google Scholar 14. Raina PO'Donnell MRosenbaum P et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005;115 (6) e626- e636PubMedGoogle ScholarCrossref 15. Brehaut JCKohen DERaina P et al. The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics 2004;114 (2) e182- e191PubMedGoogle ScholarCrossref 16. Tong HCHaig AJNelson VSYamakawa KSKandala GShin KY Low back pain in adult female caregivers of children with physical disabilities. Arch Pediatr Adolesc Med 2003;157 (11) 1128- 1133PubMedGoogle ScholarCrossref 17. Wang KWBarnard A Technology-dependent children and their families: a review. J Adv Nurs 2004;45 (1) 36- 46PubMedGoogle ScholarCrossref 18. Murphy NAChristian BCaplin DAYoung PC The health of caregivers for children with disabilities: caregiver perspectives. Child Care Health Dev 2007;33 (2) 180- 187PubMedGoogle ScholarCrossref 19. Leonard BJJohnson ALBrust JD Caregivers of children with disabilities: a comparison of those managing “OK” and those needing more help. Child Health Care 1993;22 (2) 93- 105PubMedGoogle ScholarCrossref 20. Williams PDLorenzo FDBorja M Pediatric chronic illness: effects on siblings and mothers. Matern Child Nurs J 1993;21 (4) 111- 121PubMedGoogle Scholar 21. Sullivan PMKnutson JF Maltreatment and disabilities: a population-based epidemiological study. Child Abuse Negl 2000;24 (10) 1257- 1273PubMedGoogle ScholarCrossref 22. Hibbard RADesch LW Maltreatment of children with disabilities. Pediatrics 2007;119 (5) 1018- 1025PubMedGoogle ScholarCrossref 23. Romney SCLitrownik AJNewton RRLau A The relationship between child disability and living arrangement in child welfare. Child Welfare 2006;85 (6) 965- 984PubMedGoogle Scholar 24. Kelly AFHewson PH Factors associated with recurrent hospitalization in chronically ill children and adolescents. J Paediatr Child Health 2000;36 (1) 13- 18PubMedGoogle ScholarCrossref 25. Llewellyn GDunn PFante MTurnbull LGrace R Family factors influencing out-of-home placement decisions. J Intellect Disabil Res 1999;43 (pt 3) 219- 233PubMedGoogle ScholarCrossref 26. Balinsky W Pediatric home care: reimbursement and cost benefit analysis. J Pediatr Health Care 1999;13 (6 pt 1) 288- 294PubMedGoogle ScholarCrossref 27. Thyen UKuhlthau KPerrin JM Employment, child care, and mental health of mothers caring for children assisted by technology. Pediatrics 1999;103 (6 pt 1) 1235- 1242PubMedGoogle ScholarCrossref 28. Wang Q Disability and American Families: 2000. Washington, DC US Census Bureau Department of Commerce2005; 29. King GKing SRosenbaum PGoffin R Family-centered caregiving and well-being of parents of children with disabilities: linking process with outcome. J Pediatr Psychol 1999;24 (1) 41- 53Google ScholarCrossref 30. Damiano PCMomany ETTyler MCPenziner AJLobas JG Cost of outpatient medical care for children and youth with special health care needs: investigating the impact of the medical home. Pediatrics 2006;118 (4) e1187- e1194PubMedGoogle ScholarCrossref 31. Denboba DMcPherson MGKenney MKStrickland BNewacheck PW Achieving family and provider partnerships for children with special health care needs. Pediatrics 2006;118 (4) 1607- 1615PubMedGoogle ScholarCrossref 32. Prouty RLakin KCCoucouvanis KAnderson L Progress toward a national objective of healthy people 2010: “reduce to zero the number of children 17 years and younger living in congregate care.” Ment Retard 2005;43 (6) 456- 460PubMedGoogle ScholarCrossref

Journal

Archives of Pediatrics & Adolescent MedicineAmerican Medical Association

Published: Oct 1, 2007

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