Barriers to Respite Care for Children with Special Health Care Needs.


Journal

Journal of developmental and behavioral pediatrics : JDBP
ISSN: 1536-7312
Titre abrégé: J Dev Behav Pediatr
Pays: United States
ID NLM: 8006933

Informations de publication

Date de publication:
01 04 2022
Historique:
received: 28 09 2020
accepted: 01 06 2021
pubmed: 27 7 2021
medline: 18 6 2022
entrez: 26 7 2021
Statut: ppublish

Résumé

The objective of this study was to estimate time-specific, population-based prevalence of 14 specific barriers to respite services, as reported by parents of children with special health care needs (CSHCN) with and without emotional, behavioral, or developmental problems (EBDPs), and to identify individual, family, and environmental characteristics associated with the most common barriers to respite care for families of CSHCN. Descriptive, bivariate, and multivariable logistic regression analyses were used to examine data from the National Survey of Children with Special Health Care Needs for 2005/2006 and 2009/2010. Among families reporting unmet need for respite care services, service availability or transportation barriers (23.8%) and cost barriers (19.8%) were the most commonly reported obstacles among all CSHCN, followed by lack of knowledge about where to obtain respite services (12.1%) and inconvenient service times (11.3%). Reports of location or availability barriers decreased significantly from 2005 to 2009, but service time barriers increased simultaneously. All types of barriers to respite services were reported significantly more frequently by CSHCN with EBDPs than those without, even when other demographic factors were controlled for. CSHCN conditional severity and discontinuity in insurance were positively associated with cost barriers, whereas CSHCN public health coverage was associated with reduced rates of reported cost and information barriers to respite care. Increased understanding of parent-reported barriers to respite care for families of CSHCN is critical to creating structural and practice-oriented solutions that address obstacles and increase access to respite care for these vulnerable families.

Identifiants

pubmed: 34310466
doi: 10.1097/DBP.0000000000000992
pii: 00004703-202204000-00001
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

117-129

Informations de copyright

Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.

Déclaration de conflit d'intérêts

Disclosure: The authors declare no conflict of interest.

Références

McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics. 1998;102:137–139.
Newacheck PW, Strickland B, Shonkoff JP, et al. An epidemiologic profile of children with special health care needs. Pediatrics. 1998;102:117–123.
Kenney MK, Chanlongbutra A. Prevalence of parent reported health conditions among 0- to 17-year-olds in rural United States: National Survey of Children's Health, 2016–2017. J Rural Health. 2020;36:394–409.
Child and Adolescent Health Measurement Initiative. Who Are Children with Special Health Care Needs (CSHCN)? Baltimore, MD: Data Resource Center, U.S. Department of Health and Human Services, Health Resources and Services Administration, and Maternal and Child Health Bureau; 2012. Available at: https://www.cahmi.org/wp-content/uploads/2014/06/CSHCNS-whoarecshcn_revised_07b-pdf.pdf . Accessed December 14, 2020.
Rosen-Reynoso M, Porche MV, Kwan N, et al. Disparities in access to easy-to-use services for children with special health care needs. Matern Child Health J. 2016;20:1041–1053.
Blanchard LT, Gurka M, Blackman J. Emotional, developmental, and behavioral health of American children and their families: a report from the 2003 National Survey of Children's Health. Pediatrics. 2006;117:e1202–e1212.
Romley JA, Shah AK, Chung PJ, et al. Family-provided health care for children with special health care needs. Pediatrics. 2017;139:e20161287.
Nygård C, Clancy A. Unsung heroes, flying blind—a metasynthesis of parents' experiences of caring for children with special health-care needs at home. J Clin Nurs. 2018;27:3179–3196.
Vohra R, Madhavan S, Sambamoorthi U, et al. Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism. 2014;18:815–826.
Wei X, Yu JW. The concurrent and longitudinal effects of child disability types and health on family experiences. Matern Child Health J. 2012;16:100–108.
Kilmer RP, Cook JR, Munsell EP, et al. Factors associated with positive adjustment in siblings of children with severe emotional disturbance: the role of family resources and community life. Am J Orthopsychiatry. 2010;80:473–481.
Lutenbacher M, Karp S, Ajero G, et al. Crossing community sectors: challenges faced by families of children with special health care needs. J Fam Nurs. 2005;11:162–182.
Strunk JA. Respite care for families of special needs children: a systematic review. J Dev Phys Disabil. 2010;22:615–630.
Whitmore KE, Snethen J. Respite care services for children with special healthcare needs: parental perceptions. J Spec Pediatr Nurs. 2018;23:e12217.
Bruns EJ, Burchard JD. Impact of respite care services for families with children experiencing emotional and behavioral problems. Child Serv. 2000;3:39–61.
Sobotka SA, Lynch E, Quinn MT, et al. Unmet respite needs of children with medical technology dependence. Clin Pediatr (Phila). 2019;58:1175–1186.
Welsh R, Dyer S, Evans D, et al. Identifying benefits and barriers to respite for carers of children with complex health needs: a qualitative study. Contemp Nurse. 2014;48:98–108.
Graaf G, Snowden L. The role of Medicaid home and community-based service policies in organizing and financing care for children with severe emotional disturbance. Child Youth Serv Rev. 2017;81:272–283.
Nageswaran S. Respite care for children with special health care needs. Arch Pediatr Adolesc Med. 2009;163:49–54.
Graaf G. The role of insurance status on unmet family support needs for children with complex mental health needs. Oral presentation presented at the American Public Health Association 2019 Annual Meeting; November 5, 2019; Philadelphia, PA.
Hansen M, Litzelman A, Marsh DT, et al. Approaches to serious emotional disturbance: involving multiple systems. Prof Psychol Res Pract. 2004;35:457–465.
Soni A. Statistical brief #434: the five most costly children's conditions, 2011: estimates for U.S. civilian noninstitutionalized children, ages 0–17. Available at: http://meps.ahrq.gov/mepsweb/data_files/publications/st434/stat434.shtml . Published September 10, 2015. Accessed September 10, 2015.
Perrin JM. Can mental health parity help address the mental/behavioral gap in child health? Pediatrics. 2018;142:e20181572.
Graaf G, Snowden L. Public health coverage and access to mental health care for youth with complex behavioral healthcare needs. Adm Policy Ment Health. 2020;47:395–409.
Velott DL, Agbese E, Mandell D, et al. Medicaid 1915(c) home- and community-based services waivers for children with autism spectrum disorder. Autism. 2016;20:473–482.
Doig JL, McLennan JD, Urichuk L. ‘Jumping through hoops’: parents' experiences with seeking respite care for children with special needs. Child Care Health Dev. 2009;35:234–242.
Breneol S, King ST, Best S, et al. Respite care for children and youth with complex care needs and their families: a scoping review protocol. JBI Evid Synth. 2019;17:1297–1304.
Ono E, Friedlander R, Salih T. Falling through the cracks: how service gaps leave children with neurodevelopmental disorders and mental health difficulties without the care they need. Br Columbia Med J. 2019;61:114–124.
Mullins LL, Aniol K, Boyd ML, et al. The influence of respite care on psychological distress in parents of children with developmental disabilities: a longitudinal study. Child Serv Soc Policy Res Pract. 2002;5:123–138.
Biel MG, Tang MH, Zuckerman B. Pediatric mental health care must be family mental health care. JAMA Pediatr. 2020;174:519–520.
Bramlett MD, Read D, Bethell C, et al. Differentiating subgroups of children with special health care needs by health status and complexity of health care needs. Matern Child Health J. 2009;13:151–163.
Bramlett MD, Blumberg SJ, Ormson AE, et al. Design and operation of the National Survey of Children with Special Health Care Needs, 2009–2010. Vital Health Stat Ser 1. 2014:1–271.
Gelberg L, Andersen RM, Leake BD. The behavioral model for vulnerable populations: application to medical care use and outcomes for homeless people. Health Serv Res. 2000;34:1273–1302.
Aday LA, Andersen R. A framework for the study of access to medical care. Health Serv Res. 1974;9:208–220.
Andersen RM. Revisiting the behavioral model and access to medical care: does it matter? J Health Soc Behav. 1995;36:1–10.
Stroul BA, Friedman RM. A System of Care for Severely Emotionally Disturbed Children & Youth. Washington, DC: CASSP Technical Assistance Center, Georgetown University Child Development Center; 1986. Available at: http://eric.ed.gov/?id=ED330167 . Accessed March 30, 2015.
Timoneda JC. Estimating group fixed effects in panel data with a binary dependent variable: how the LPM outperforms logistic regression in rare events data. Soc Sci Res. 2021;93:102486.
Ahmedani BK, Hock RM. Health care access and treatment for children with co-morbid autism and psychiatric conditions. Soc Psychiatry Psychiatr Epidemiol. 2012;47:1807–1814.
Cheak-Zamora NC, Thullen M. Disparities in quality and access to care for children with developmental disabilities and multiple health conditions. Matern Child Health J. 2017;21:36–44.
Lindly OJ, Chavez AE, Zuckerman KE. Unmet health services need among US children with developmental disabilities: associations with family impact and child functioning. J Dev Behav Pediatr. 2016;37:712–723.
Schieve LA, Boulet SL, Kogan MD, et al. A population-based assessment of the health, functional status, and consequent family impact among children with Down syndrome. Disabil Health J. 2011;4:68–77.
Derigne L, Porterfield S, Metz S. The influence of health insurance on parent's reports of children's unmet mental health needs. Matern Child Health J. 2009;13:176–186.
Chiri G, Warfield ME. Unmet need and problems accessing core health care services for children with autism spectrum disorder. Matern Child Health J. 2012;16:1081–1091.
Inkelas M, Raghavan R, Larson K, et al. Unmet mental health need and access to services for children with special health care needs and their families. Ambul Pediatr. 2007;7:431–438.
Graaf G, McBeath B, Lwin K, et al. Supporting evidence-informed practice in human service organizations: an exploratory study of link officers. Hum Serv Organ Manag Leadersh Gov. 2017;41:58–75.
Graaf G, Snowden L. Medicaid waiver adoption for youth with complex behavioral health care needs: an analysis of state decision-making. J Disabil Policy Stud. 2019;31:87–98.
Feldman HM, Buysse CA, Hubner LM, et al. Patient Protection and Affordable Care Act of 2010 and children and youth with special health care needs. J Dev Behav Pediatr. 2015;36:207–217.
Harrington C, Ng T, LaPlante M, et al. Medicaid home- and community-based services: impact of the Affordable Care Act. J Aging Soc Policy. 2012;24:169–187.
Otsuki N, Fukui S, Sakaguchi Y. Measuring the benefits of respite care use by children with disabilities and their families. J Pediatr Nurs. 2020;53:e14–e20.
Caples M, Sweeney J. Quality of life: a survey of parents of children/adults with an intellectual disability who are availing of respite care. Br J Learn Disabil. 2011;39:64–72.
González-García C, Bravo A, Arruabarrena I, et al. Emotional and behavioral problems of children in residential care: Screening detection and referrals to mental health services. Child Youth Serv Rev. 2017;73:100–106.
Rose RA, Lanier P. A longitudinal study of child maltreatment and mental health predictors of admission to psychiatric residential treatment facilities. Int J Environ Res Public Health. 2017;14:1141.
Kaiser T, LI J, Pollmann-Schult M, Song AY. Poverty and child behavioral problems: the mediating role of parenting and parental well-being. Int J Environ Res Public Health. 2017;14:981.
Mazza JRSE, Lambert J, Zunzunegui MV, Tremblay RE, Boivin M, Côtè SM. Early adolescence behavior problems and timing of poverty during childhood: A comparison of lifecourse models. Soc Sci Med 1982. 2017;177:35–42.
Fitzsimons E, Goodman A, Kelly E, Smith JP. Poverty dynamics and parental mental health: Determinants of childhood mental health in the UK. Soc Sci Med 1982. 2017;175:43–51.

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