Characterizing the systems of support for families of children with disabilities: A review of the literature

References

• * References marked with asterisk were included in systematic review
   Google Scholar
• *Accurso, E. C., Garland, A. F., Haine-Schlagel, R., Brookman-Frazee, L., & Baker-Ericzén, M. J. (2015). Factors contributing to reduced caregiver strain in a publicly funded child mental health system. Journal of Emotional and Behavioral Disorders, 23, 131–143. doi:10.1177/1063426614532948
   PubMed Web of Science ®Google Scholar
• *Acri, M., Frank, S., Olin, S. S., Burton, G., Ball, J. L., Weaver, J., & Hoagwood, K. E. (2015). Examining the feasibility and acceptability of a screening and outreach model developed for a peer workforce. Journal of Child and Family Studies, 24, 341–350. doi:10.1007/s10826-013-9841-z
   PubMed Web of Science ®Google Scholar
• *Akshoomoff, N., Stahmer, A. C., Corsello, C., & Mahrer, N. E. (2010). What happens next? Follow-up from the children’s toddler school program. Journal of Positive Behavior Interventions, 12, 245–253. doi:10.1177/1098300709343724
   PubMed Web of Science ®Google Scholar
• Al Khateeb, J. M., Al Hadidi, M. S., & Al Khatib, A. J. (2014). Addressing the unique needs of Arab American children with disabilities. Journal of Child and Family Studies, 24, 2432–2440. doi:10.1007/s10826-014-0046-x
   Web of Science ®Google Scholar
• *Åsberg, K. K., Vogel, J. J., & Bowers, C. A. (2008). Exploring correlates and predictors of stress in parents of children who are deaf: Implications of perceived social support and mode of communication. Journal of Child and Family Studies, 17, 486–499. doi:10.1007/s10826-007-9169-7
   Web of Science ®Google Scholar
• *Azad, G., Blacher, J., & Marcoulides, G. A. (2013). Mothers of children with developmental disabilities: Stress in early and middle childhood. Research in Developmental Disabilities, 34, 3449–3459. doi:10.1016/j.ridd.2013.07.009
   PubMed Web of Science ®Google Scholar
• *Bagner, D. M., & Eyberg, S. M. (2007). Parent-child interaction therapy for disruptive behavior in children with mental retardation: A randomized controlled trial. Journal of Clinical Child & Adolescent Psychology, 36, 418–429. doi:10.1080/15374410701448448
   PubMed Web of Science ®Google Scholar
• Bailey, D. B., Golden, R. N., Roberts, J., & Ford, A. (2007). Maternal depression and developmental disability: Research critique. Mental Retardation and Developmental Disabilities, 13, 321–329. doi:10.1002/mrdd.20172
   PubMedGoogle Scholar
• Bailey, D. B., Hebbeler, K., Spiker, D., Scarborough, A., & Mallik, S. (2004). First experiences with early intervention: A national perspective. Pediatrics, 113, 887–896. doi:10.1542/peds.113.4.887
   PubMed Web of Science ®Google Scholar
• *Baker-Ericzén, M. J., Brookman-Frazee, L., & Stahmer, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and Practice for Persons with Severe Disabilities, 30, 194–204. doi:10.2511/rpsd.30.4.194
   Web of Science ®Google Scholar
• *Balakrishnan, A., Stephens, B. E., Burke, R. T., Yatchmink, Y., Alksninis, B. L., Tucker, R., … Vohr, B. R. (2011). Impact of very low birth weight infants on the family at 3 months corrected age. Early Human Development, 87, 31–35. doi:10.1016/j.earlhumdev.2010.09.374
   PubMed Web of Science ®Google Scholar
• *Banach, M., Iudice, J., Conway, L., & Couse, L. J. (2010). Family support and empowerment: Post autism diagnosis support group for parents. Social Work with Groups, 33, 69–83. doi:10.1080/01609510903437383
   Google Scholar
• *Barnard-Brak, L., & Thomson, D. (2009). How is taking care of caregivers of children with disabilities related to academic achievement? Child and Youth Care Forum, 38, 91–102. doi:10.1007/s10566-009-9070-1
   Web of Science ®Google Scholar
• *Baumann, S. L., Dyches, T. T., & Braddick, M. (2005). Being a sibling. Nursing Science Quarterly, 18, 51–58. doi:10.1177/0894318404272108
   PubMed Web of Science ®Google Scholar
• *Bishop, S. L., Richler, J., Cain, A. C., & Lord, C. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorders. American Journal on Mental Retardation, 112, 450–461. doi:10.1352/0895-8017(2007)112[450:POPNII]2.0.CO;2
   PubMedGoogle Scholar
• *Blacher, J., & Baker, B. L. (2007). Positive impact of intellectual disability on families. American Journal on Mental Retardation, 112, 330–348. doi:10.1352/0895-8017(2007)112[0330:PIOIDO]2.0.CO;2
   PubMedGoogle Scholar
• *Blacher, J., Begum, G. F., Marcoulides, G. A., & Baker, B. L. (2013). Longitudinal perspectives of child positive impact on families: Relationship to disability and culture. American Journal on Intellectual and Developmental Disabilities, 118, 141–155. doi:10.1352/1944-7558-118.2.141
   PubMedGoogle Scholar
• *Brennan, E. M., & Brannan, A. M. (2005). Participation in the paid labor force by caregivers of children with emotional and behavioral disorders. Journal of Emotional and Behavioral Disorders, 13, 237–246. doi:10.1177/10634266050130040501
   Web of Science ®Google Scholar
• *Brister, T., Cavaleri, M. A., Olin, S. S., Shen, S., Burns, B. J., & Hoagwood, K. E. (2012). An evaluation of the NAMI basics program. Journal of Child and Family Studies, 21, 439–442. doi:10.1007/s10826-011-9496-6
   Web of Science ®Google Scholar
• *Brooks, B. A., Floyd, F., Robins, D. L., & Chan, W. Y. (2015). Extracurricular activities and the development of social skills in children with intellectual and specific learning disabilities. Journal of Intellectual Disability Research, 59, 678–687. doi:10.1111/jir.12171
   PubMed Web of Science ®Google Scholar
• *Brown, J. V., Demi, A. S., Celano, M. P., Bakeman, R., Kobrynski, L., & Wilson, S. R. (2005). A home visiting asthma education program: Challenges to program implementation. Health Education & Behavior, 32, 42–56. doi:10.1177/1090198104266895
   PubMed Web of Science ®Google Scholar
• *Bruns, D., & Foerster, K. (2011). ‘We’ve been through it all together’: Supports for parents with children with rare trisomy conditions. Journal of Intellectual Disability Research, 55, 361–369. doi:10.1111/jir.2011.55.issue-4
   PubMed Web of Science ®Google Scholar
• *Butcher, J. S., Wolraich, M. L., Gillaspy, S. R., Martin, V. G., & Wild, R. C. (2014). The impact of a medical home for children with developmental disability within a pediatric resident continuity clinic. Journal of the Oklahoma State Medical Association, 107, 632–638.
   PubMedGoogle Scholar
• *Caicedo, C. (2015). Health and functioning of families of children with special health care needs cared for in home care, long-term care, and medical day care settings. Journal of Developmental & Behavioral Pediatrics, 36, 352–361. doi:10.1097/DBP.0000000000000167
   PubMed Web of Science ®Google Scholar
• *Caley, L. M. (2012). Risk and protective factors associated with stress in mothers whose children are enrolled in early intervention services. Journal of Pediatric Health Care, 26, 346–355. doi:10.1016/j.pedhc.2011.01.001
   PubMed Web of Science ®Google Scholar
• *Carter, K. B., & Mandrell, B. N. (2013). Development of a respite care program for caregivers of pediatric oncology patients and their siblings. Journal of Pediatric Oncology Nursing, 30, 109–114. doi:10.1177/1043454212473652
   PubMed Web of Science ®Google Scholar
• *Cheng, E. R., Palta, M., Poehlmann-Tynan, J., & Witt, W. P. (2015). The influence of children’s cognitive delay and behavior problems on maternal depression. Journal of Pediatrics, 167, 679–686. doi:10.1016/j.jpeds.2015.06.003
   PubMed Web of Science ®Google Scholar
• Chung, P. J., Garfield, C. F., Elliott, M. N., Vestal, K. D., Klein, D. J., & Schuster, M. A. (2013). Access to leave benefits for primary caregivers of children with special health care needs: A double bind. Academic Pediatrics, 13, 222–228. doi:10.1016/j.acap.2013.01.001
   PubMed Web of Science ®Google Scholar
• *Cohen, S. R., Holloway, S. D., Domínguez-Pareto, I., & Kuppermann, M. (2014). Receiving or believing in family support? Contributors to the life quality of Latino and non-Latino families of children with intellectual disability. Journal of Intellectual Disability Research, 58, 333–345. doi:10.1111/jir.2014.58.issue-4
   PubMed Web of Science ®Google Scholar
• *Cohen, S. R., Holloway, S. D., Domínguez-Pareto, I., & Kuppermann, M. (2015). Support and self-efficacy among Latino and White parents of children with ID. American Journal on Intellectual and Developmental Disabilities, 120, 16–31. doi:10.1352/1944-7558-120.1.16
   PubMedGoogle Scholar
• *Correa, V. I., Bonilla, Z. E., & Reyes-MacPherson, M. E. (2011). Support networks of single Puerto Rican mothers of children with disabilities. Journal of Child and Family Studies, 20, 66–77. doi:10.1007/s10826-010-9378-3
   Web of Science ®Google Scholar
• Donovan, E. (2013). A phenomenological exploration of Arab American parents’ experiences with the special education process ( Unpublished doctoral dissertation). Retrieved from www.aaanet.org/…/edonovan-cae-poster-2011.pdf
   Google Scholar
• *Dykens, L. M., Fisher, M. H., Taylor, J. L., Lambert, W., & Miodrag, N. (2014). Reducing distress in mothers of children with autism and other disabilities: A randomized trial. Pediatrics, 134, e454–e463. doi:10.1542/peds.2013-3164
   Google Scholar
• *Ekas, N., Lickenbrock, D. M., & Whitman, T. L. (2010). Optimism, social support, and well-being in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40, 1274–1284. doi:10.1007/s10803-010-0986-y
   PubMed Web of Science ®Google Scholar
• *Ekas, N. V., Whitman, T. L., & Shivers, C. (2009). Religiosity, spirituality, and socioemotional functioning in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 39, 706–719. doi:10.1007/s10803-008-0673-4
   PubMed Web of Science ®Google Scholar
• *Estes, A., Olson, E., Sullivan, K., Greenson, J., Winter, J., Dawson, G., & Munson, J. (2013). Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders. Brain and Development, 35, 133–138. doi:10.1016/j.braindev.2012.10.004
   PubMed Web of Science ®Google Scholar
• *Farrell, A. F., Bowen, G. L., & Swick, D. C. (2014). Network supports and resiliency among U.S. military spouses with children with special health care needs. Interdisciplinary Journal of Applied Family Studies, 63, 55–70. doi:10.1111/fare.12045
   Web of Science ®Google Scholar
• *Fish, W. W. (2006). Perceptions of parents of students with autism towards the IEP meeting: A case study of one family support group chapter. Education, 127, 56–68.
   Google Scholar
• *Fiss, A. L., Chiarello, L. A., Bartlett, D., Palisano, R. J., Jeffries, L., Almasri, N., & Chang, H.-J. (2013). Family ecology of young children with cerebral palsy. Child: Care, Health and Development, 40, 562–571.
   PubMed Web of Science ®Google Scholar
• *Fung, M. P., Fox, R. A., & Harris, S. E. (2014). Treatment outcomes for at-risk young children with behavior problems: Toward a new definition of success. Journal of Social Service Research, 40, 623–641. doi:10.1080/01488376.2014.915283
   Web of Science ®Google Scholar
• *Gallagher, P. A., Kresak, K., & Rhodes, C. A. (2010). Perceived needs of grandmothers of children with disabilities. Topics in Early Childhood Special Education, 30, 56–64. doi:10.1177/0271121409360826
   Web of Science ®Google Scholar
• *Gates, L. B., & Akabas, S. H. (2012). Meeting the demands of work and responsibilities of caring for a child with asthma: Consequences for caregiver well-being. Journal of Social Service Research, 38, 656–671. doi:10.1080/01488376.2012.709481
   Web of Science ®Google Scholar
• Glaser, B. G., & Strauss, A. L. (1967). Discovery of grounded theory: Strategies for qualitative research. Chicago, IL: Aldine.
   Google Scholar
• *Guralnick, M. J., Connor, R. T., & Johnson, C. L. (2009) Home-based peer social networks of young children with Down syndrome: A developmental perspective. American Journal on Intellectual and Developmental Disabilities 114, 340–355. doi:10.1352/1944-7558-114.5.340
   PubMedGoogle Scholar
• *Hall, H. (2012). Families of children with autism: Behaviors of children, community support and coping. Issues in Comprehensive Pediatric Nursing, 35, 111–132. doi:10.3109/01460862.2012.678263
   PubMedGoogle Scholar
• *Hall, H. R., & Graff, J. C. (2010). Parenting challenges in families of children with autism: A pilot study. Issues in Comprehensive Pediatric Nursing, 33, 187–204. doi:10.3109/01460862.2010.528644
   PubMedGoogle Scholar
• *Hall, H. R., & Graff, J. C. (2012). Maladaptive behaviors of children with autism: Parent support, stress, and coping. Issues in Comprehensive Pediatric Nursing, 35, 194–214. doi:10.3109/01460862.2012.734210
   PubMedGoogle Scholar
• *Hall, H. R., Neely-Barnes, S. L., Graff, J. C., Krcek, T. E., Roberts, R. J., & Hankins, J. S. (2012). Parental stress in families of children with a genetic disorder/disability and the resiliency model of family stress, adjustment, and adaptation. Issues in Comprehensive Pediatric Nursing, 35, 24–44. doi:10.3109/01460862.2012.646479
   PubMedGoogle Scholar
• *Harper, A., Dyches, T. T., Harper, J., Roper, S. O., & South, M. (2013). Respite care, marital quality, and stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43, 2604–2616. doi:10.1007/s10803-013-1812-0
   PubMed Web of Science ®Google Scholar
• Hoagwood, K. E., Cavaleri, M. A., Olin, S. S., Burns, B. J., Slaton, E., Gruttadaro, D., & Hughes, R. (2010). Family support in children’s mental health: A review and synthesis. Clinical Child and Family Psychology Review, 13, 1–45. doi:10.1007/s10567-009-0060-5
   PubMed Web of Science ®Google Scholar
• Honberg, L., McPherson, M., Strickland, B., Gage, J. C., & Newacheck, P. W. (2005). Assuring adequate health insurance: Results of the national survey of children with special health care needs. Pediatrics, 115, 1233–1239. doi:10.1542/peds.2004-1503
   PubMed Web of Science ®Google Scholar
• *Houser, L., McCarthy, M., Lawer, L., & Mandell, D. (2014). A challenging fit: Employment, childcare, and therapeutic support in families of children with autism spectrum disorders. Journal of Social Service Research, 40, 681–698. doi:10.1080/01488376.2014.930944
   Web of Science ®Google Scholar
• *Jackson, C. (2011). Family supports and resources for parents of children who are deaf or hard of hearing. American Annals of the Deaf, 156, 343–362. doi:10.1353/aad.2011.0038
   PubMed Web of Science ®Google Scholar
• *Jackson, C. W., Wegner, J. R., & Turnbull, A. P. (2010). Family quality of life following early identification of deafness. Language, Speech, and Hearing Services in Schools, 41, 194–205. doi:10.1044/0161-1461(2009/07-0093)
   PubMed Web of Science ®Google Scholar
• *Jegatheesan, B., Miller, P. J., & Fowler, S. A. (2010). Autism from a religious perspective: A study of parental beliefs in South Asian Muslim immigrant families. Focus on Autism and Other Developmental Disabilities, 25, 98–109. doi:10.1177/1088357610361344
   Web of Science ®Google Scholar
• *Jinnah, H. A., & Stoneman, Z. (2008). Parents’ experiences in seeking child care for school age children with disabilities – Where does the system break down? Children and Youth Services Review, 30, 967–977. doi:10.1016/j.childyouth.2007.11.020
   Web of Science ®Google Scholar
• *Justice, L. M., Kaderavek, J., Bowles, R., & Grimm, K. (2005). Language impairment, parent-child shared reading, and phonological awareness: A feasibility study. Topics in Early Childhood Special Education, 25, 143–156. doi:10.1177/02711214050250030201
   Web of Science ®Google Scholar
• *Kao, B., Romero-Bosch, L., Plante, W., & Lobato, D. (2012). The experiences of Latino siblings of children with developmental disabilities. Child: Care, Health and Development, 38, 545–552.
   PubMed Web of Science ®Google Scholar
• Kerr, S. P. (2016). Parental leave legislation and women’s work: A story of unequal opportunities. Journal of Policy Analysis and Management, 35, 117–144. doi:10.1002/pam.21875
   Web of Science ®Google Scholar
• *Kersh, J., Hedvat, T. T., Hauser-Cram, P., & Warfield, M. E. (2006). The contribution of marital quality to the well-being of parents of children with developmental disabilities. Journal of Intellectual Disability Research, 50, 883–893. doi:10.1111/jir.2006.50.issue-12
   PubMed Web of Science ®Google Scholar
• Khetani, M. A., Cohn, E. S., Orsmond, G. I., Law, M. C., & Coster, W. J. (2013). Parent perspectives of participation in home and community activities when receiving part C early intervention services. Topics in Early Childhood Special Education, 32, 234–245. doi:10.1177/0271121411418004
   Web of Science ®Google Scholar
• *Kilmer, R. P., Cook, J. R., Munsell, E. P., & Salvador, S. K. (2010). Factors associated with positive adjustment in siblings of children with severe emotional disturbance: The role of family resources and community life. American Journal of Orthopsychiatry, 80, 473–481. doi:10.1111/j.1939-0025.2010.01050.x
   PubMed Web of Science ®Google Scholar
• *Kilmer, R. P., Cook, J. R., Taylor, C., Kane, S. F., & Clark, L. Y. (2008). Siblings of children with severe emotional disturbances: Risks, resources, and adaptation. American Journal of Orthopsychiatry, 78, 1–10. doi:10.1037/0002-9432.78.1.1
   PubMed Web of Science ®Google Scholar
• *Kirby, A. V., White, T. J., & Baranek, G. T. (2015). Caregiver strain and sensory features in children with autism spectrum disorder and other developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 120, 32–45. doi:10.1352/1944-7558-120.1.32
   PubMedGoogle Scholar
• *Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & Van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics, 122, e1149–e1158. doi:10.1542/peds.2008-1057
   Google Scholar
• *Kresak, K. E., Gallagher, P. A., & Kelley, S. J. (2014). Grandmothers raising grandchildren with disabilities: Sources of support and family quality of life. Journal of Early Intervention, 36, 3–17. doi:10.1177/1053815114542506
   Web of Science ®Google Scholar
• *Kresak, K. E., Gallagher, P. A., & Rhodes, C. (2009). Siblings of infants and toddlers with disabilities in early intervention. Topics in Early Childhood Special Education, 29, 143–154. doi:10.1177/0271121409337949
   Web of Science ®Google Scholar
• *Kuo, D. Z., Robbins, J. M., Lyle, R. E., Barrett, K. W., Burns, K. H., & Casey, P. H. (2013). Parent-reported outcomes of comprehensive care for children with medical complexity. Families, Systems, & Health, 31, 132–141. doi:10.1037/a0032341
   PubMed Web of Science ®Google Scholar
• *Lequia, J., Machalicek, W., & Lyons, G. (2013). Parent education intervention results in decreased challenging behavior and improved task engagement for students with disabilities during academic tasks. Behavioral Interventions, 28, 322–343. doi:10.1002/bin.v28.4
   Web of Science ®Google Scholar
• *Lo, L. (2010). Perceived benefits experienced in support groups for Chinese families of children with disabilities. Early Child Development and Care, 180, 405–415. doi:10.1080/03004430802002625
   Google Scholar
• *Lobar, S. L. (2014). Family adjustment across cultural groups in autistic spectrum disorders. Advances in Nursing Science, 37, 174–186. doi:10.1097/ANS.0000000000000026
   PubMed Web of Science ®Google Scholar
• *Lobato, D. J., Kao, B. T., & Plante, W. (2005). Latino sibling knowledge and adjustment to chronic disability. Journal of Family Psychology, 19, 625–632. doi:10.1037/0893-3200.19.4.625
   PubMed Web of Science ®Google Scholar
• *Long, K. A., Kao, B., Plante, W., Seifer, R., & Lobato, D. (2015). Cultural and child-related predictors of distress among Latina caregivers of children with intellectual disabilities. American Journal on Intellectual and Developmental Disabilities, 120, 145–165. doi:10.1352/1944-7558-120.2.145
   PubMedGoogle Scholar
• *Macias, M. M., Saylor, C. F., Haire, K. B., & Bell, N. L. (2007). Predictors of paternal versus maternal stress in families of children with neural tube defects. Children’s Health Care, 36, 99–115. doi:10.1080/02739610701334558
   Web of Science ®Google Scholar
• *Magaña, S., Lopez, K., & Machalicek, W. (2015). Parents taking action: A psycho-educational intervention for Latino parents of children with autism spectrum disorder. Family Process. Advance online publication. doi:10.1111/famp.12169
   Google Scholar
• *Manning, M. M., Wainwright, L., & Bennett, J. (2011). The double ABCX model of adaptation in racially diverse families with a school-age child with autism. Journal of Autism and Developmental Disorders, 41, 320–331. doi:10.1007/s10803-010-1056-1
   PubMed Web of Science ®Google Scholar
• Marín, G., & Marín, B. V. (1991). Research with Hispanic populations. Newbury Park, CA: Sage.
   Google Scholar
• *Marshall, J., & Mendez, L. M. R. (2014). Following up on community-based developmental screening: Do young children get the services they need? Infants & Young Children, 27, 276–291. doi:10.1097/IYC.0000000000000019
   Web of Science ®Google Scholar
• Marshall, J., Tanner, J. P., Kozyr, Y. A., & Kirby, R. S. (2014). Services and supports for young children with down syndrome: Parent and provider perspectives. Child: Care, Health, and Development, 41, 365–373.
   PubMed Web of Science ®Google Scholar
• McCann, D., Bull, R., & Winzenberg, T. (2015). Sleep deprivation in parents caring for children with complex needs at home: A mixed methods systematic review. Journal of Family Nursing, 21, 86–118. doi:10.1177/1074840714562026
   PubMed Web of Science ®Google Scholar
• *McConnell, A. D., Futris, T. G., & Bartholomae, S. (2008). Mothers of children with physical disabilities: Influence of family processes on mothers’ depressive symptomatology. Marriage & Family Review, 45, 68–83. doi:10.1080/01494920802537522
   Google Scholar
• *McGrew, J. H., & Keyes, M. L. (2014). Caregiver stress during the first year after diagnosis of an autism spectrum disorder. Research in Autism Spectrum Disorders, 8, 1373–1385. doi:10.1016/j.rasd.2014.07.011
   Web of Science ®Google Scholar
• *McIntyre, L. L. (2008). Adapting Webster-Stratton’s incredible years parent training for children with developmental delays: Findings from a treatment group only study. Journal of Intellectual Disability Research, 52, 1176–1192. doi:10.1111/j.1365-2788.2008.01108.x
   PubMed Web of Science ®Google Scholar
• Mehta, N. K., Lee, H., & Ylitalo, K. R. (2013). Child health in the United States: Recent trends in racial/ethnic disparities. Social Science & Medicine, 95, 6–15. doi:10.1016/j.socscimed.2012.09.011
   PubMed Web of Science ®Google Scholar
• *Meyer, K. A., Ingersoll, B., & Hambrick, D. Z. (2011). Factors influencing adjustment in siblings of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 1413–1420. doi:10.1016/j.rasd.2011.01.027
   Web of Science ®Google Scholar
• *Montes, G., & Halterman, J. S. (2007). Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics, 119(5), e1040–e1046. doi:10.1542/peds.2006-2819
   Google Scholar
• *Mueller, T. G., Milian, M., & Lopez, M. I. (2009). Latina mothers’ views of a parent-to-parent support group in the special education system. Research and Practice for Persons with Severe Disabilities, 34, 113–122. doi:10.2511/rpsd.34.3-4.113
   Web of Science ®Google Scholar
• *Mueller, T. G., Singer, G. H. S., & Draper, L. M. (2008). Reducing parental dissatisfaction with special education in two school districts: Implementing conflict prevention and alternative dispute resolution. Journal of Educational and Psychological Consultation, 18, 191–233. doi:10.1080/10474410701864339
   Web of Science ®Google Scholar
• *Mulvihill, B. A., Wingate, M. S., Altarac, M., Mulvihill, F. X., Redden, D. T., Telfair, J., … Ellis, D. E. (2005). The association of child condition severity with family functioning and relationship with health care providers among children and youth with special health care needs in Alabama. Maternal and Child Health Journal, 95, S87–S97. doi:10.1007/s10995-005-3860-3
   Google Scholar
• *Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009) “My greatest joy and my greatest heart ache”: Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3, 670–684. doi:10.1016/j.rasd.2009.01.004
   Web of Science ®Google Scholar
• *Narr, R. F., & Kemmery, M. (2015). The nature of parent support provided by parent mentors for families with deaf/hard-of-hearing children: Voices from the start. Journal of Deaf Studies and Deaf Education, 20, 67–74. doi:10.1093/deafed/enu029
   PubMed Web of Science ®Google Scholar
• *Neece, C. L., Green, S. A., & Baker, B. L. (2012). Parenting stress and child behavior problems: A transactional relationship across time. American Journal on Intellectual and Developmental Disabilities, 117, 48–66. doi:10.1352/1944-7558-117.1.48
   PubMedGoogle Scholar
• *Neely-Barnes, S. L., Graff, J. C., Roberts, R. J., Hall, H. R., & Hankins, J. S. (2010). “It’s our job”: Qualitative study of family responses to ableism. Intellectual and Developmental Disabilities, 48, 245–258. doi:10.1352/1934-9556-48.4.245
   PubMed Web of Science ®Google Scholar
• *Nefdt, N., Koegel, R., Singer, G., & Gerber, M. (2010). The use of a self-directed learning program to provide introductory training in pivotal response treatment to parents of children with autism. Journal of Positive Behavior Interventions, 12, 23–32. doi:10.1177/1098300709334796
   Web of Science ®Google Scholar
• *Paley, B., O’Connor, M. J., Frankel, F., & Marquardt, R. (2006). Predictors of stress in parents of children with fetal alcohol spectrum disorders. Journal of Developmental and Behavioral Pediatrics, 27, 396–404. doi:10.1097/00004703-200610000-00005
   PubMed Web of Science ®Google Scholar
• Parish, S., Magaña, S., Rose, R., Timberlake, M., & Swaine, J. G. (2012). Health care of Latino children with Autism and other developmental disabilities: Quality of provider interaction mediates utilization. American Journal on Intellectual and Developmental Disabilities, 117, 304–315. doi:10.1352/1944-7558-117.4.304
   PubMedGoogle Scholar
• *Patel, S. K., Wong, A. L., Cuevas, M., & Van Horn, H. (2013). Parenting stress and neurocognitive late effects in childhood cancer survivors. Psychooncology, 22, 1774–1782. doi:10.1002/pon.3213
   PubMed Web of Science ®Google Scholar
• Perrin, J. M., Fluet, C. F., Honberg, L., Anderson, B., Wells, N., Epstein, S., … Kuhlthau, K. A. (2007). Benefits for employees with children with special needs: Findings from the collaborative employee benefit study. Health Affairs, 26, 1096–1103. doi:10.1377/hlthaff.26.4.1096
   PubMed Web of Science ®Google Scholar
• *Phaneuf, L., & McIntyre, L. L. (2011). The application of a three-tier model of intervention to parent training. Journal of Positive Behavior Interventions, 13, 198–207. doi:10.1177/1098300711405337
   PubMed Web of Science ®Google Scholar
• *Phelps, K. W., McCammon, S. L., Wuensch, K. L., & Golden, J. A. (2009). Enrichment, stress, and growth from parenting an individual with an autism spectrum disorder. Journal of Intellectual and Developmental Disability, 34, 133–141. doi:10.1080/13668250902845236
   PubMed Web of Science ®Google Scholar
• *Prelock, P. A., Calhoun, J., Morris, H., & Platt, G. (2011). Supporting parents to facilitate communication and joint attention in their young children with autism spectrum disorders: Two pilot studies. Topics in Language Disorders, 31, 210–234. doi:10.1097/TLD.0b013e318227bd3f
   Web of Science ®Google Scholar
• Radloff, L. S. (1977). The CED-D Scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–401.
   Google Scholar
• *Resch, J. A., Mireles, G., Benz, M. R., Grenwelge, C., Peterson, R., & Zhang, D. (2010). Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities. Rehabilitation Psychology, 55, 139–150. doi:10.1037/a0019473
   PubMed Web of Science ®Google Scholar
• *Ruble, L. A., & McGrew, J. H. (2007). Community services outcomes for families and children with autism spectrum disorders. Research in Autism Spectrum Disorders, 1, 360–372. doi:10.1016/j.rasd.2007.01.002
   Web of Science ®Google Scholar
• *Ruffolo, M. C., Kuhn, M. T., & Evans, M. E. (2005). Support, empowerment, and education: A study of multiple family group psychoeducation. Journal of Emotional and Behavioral Disorders, 13, 200–212. doi:10.1177/10634266050130040201
   Web of Science ®Google Scholar
• *Sage, K. D., & Jegatheesan, B. (2010). Perceptions of siblings with autism and relationships with them: European American and Asian American siblings draw and tell. Journal of Intellectual and Developmental Disability, 35, 92–103. doi:10.3109/13668251003712788
   PubMed Web of Science ®Google Scholar
• *Shaw, S. L. (2005). Grandparent involvement in the communication development of children who are deafblind. Educational Gerontology, 31, 51–71. doi:10.1080/03601270590522198
   Web of Science ®Google Scholar
• Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage.
   Google Scholar
• *Sullivan, A., Winograd, G., Verkuilen, J., & Fish, M. C. (2012). Children on the autism spectrum: Grandmother involvement and family functioning. Journal of Applied Research in Intellectual Disabilities, 25, 484–494. doi:10.1111/jar.2012.25.issue-5
   PubMed Web of Science ®Google Scholar
• *Swanson, J., Raab, M., & Dunst, C. J. (2011). Strengthening family capacity to provide young children everyday natural learning opportunities. Journal of Early Childhood Research, 9, 66–80. doi:10.1177/1476718X10368588
   Google Scholar
• *Taft, T. H., Ballou, S., & Keefer, L. (2012). Preliminary evaluation of maternal caregiver stress in pediatric eosinophilic gastrointestinal disorders. Journal of Pediatric Psychology, 37, 523–532. doi:10.1093/jpepsy/jsr118
   PubMed Web of Science ®Google Scholar
• *Taylor, N. E., Wall, S. M., Liebow, H., Sabatino, C. A., Timberlake, E. M., & Farber, M. Z. (2005). Mother and soldier: Raising a child with a disability in a low-income military family. Exceptional Children, 72, 83–99. doi:10.1177/001440290507200105
   Web of Science ®Google Scholar
• *Tervo, R. C. (2012). Developmental and behavior problems predict parenting stress in young children with global delay. Journal of Child Neurology, 27, 291–296. doi:10.1177/0883073811418230
   PubMed Web of Science ®Google Scholar
• *Timberlake, M. T., Leutz, W. N., Warfield, M. E., & Chiri, G. (2014). “In the driver’s seat”: Parent perceptions of choice in a participant-directed Medicaid waiver program for young children with autism. Journal of Autism and Developmental Disorders, 44, 903–914. doi:10.1007/s10803-013-1942-4
   PubMed Web of Science ®Google Scholar
• *Vohr, B. R., Jodoin-Krauzyk, J., Tucker, R., Johnson, M. J., Topol, D., & Ahlgren, M. (2008). Results of newborn screening for hearing loss: Effects on the family in the first 2 years of life. Archives of Pediatrics & Adolescent Medicine, 162, 205–211. doi:10.1001/archpediatrics.2007.46
   PubMedGoogle Scholar
• *Wheeler, A., Hatton, D., Reichardt, A., & Bailey, D. (2007). Correlates of maternal behaviours in mothers of children with fragile X syndrome. Journal of Intellectual Disability Research, 51, 447–462. doi:10.1111/jir.2007.51.issue-6
   PubMed Web of Science ®Google Scholar
• *Wheeler, A. C., Skinner, D. G., & Bailey, D. B. (2008). Perceived quality of life in mothers of children with fragile X syndrome. American Journal on Mental Retardation, 113, 159–177. doi:10.1352/0895-8017(2008)113[159:PQOLIM]2.0.CO;2
   PubMedGoogle Scholar
• *Woodman, A. C. (2014). Trajectories of stress among parents of children with disabilities: A dyadic analysis. Family Relations, 63, 39–54. doi:10.1111/fare.2014.63.issue-1
   Web of Science ®Google Scholar
• *Worcester, J. A., Nesman, T. M., Mendez, L. M. R., & Keller, H. R. (2008). Giving voice to parents of young children with challenging behavior. Exceptional Children, 74, 509–525.
   Web of Science ®Google Scholar
• *Zajicek-Farber, M. L., Lotrecchiano, G. R., Long, T. M., & Farber, J. M. (2015). Parental perceptions of family centered care in medical homes of children with neurodevelopmental disabilities. Maternal and Child Health Journal, 19, 1744–1755. doi:10.1007/s10995-015-1688-z
   PubMed Web of Science ®Google Scholar
• Zuckerman, K. E., Cai, X., Perrin, J. M., & Donelan, K. (2011). Incomplete specialty referral among children in community health centers. Journal of Pediatrics, 158, 24–30. doi:10.1016/j.jpeds.2010.07.012
   PubMed Web of Science ®Google Scholar
• Zuckerman, K. E., Mattox, K., Donelan, K., Batbayar, O., Baghaee, A., & Bethell, C. (2013). Pediatrician identification of Latino children at risk for autism spectrum disorder. Pediatrics, 132, 445–453. doi:10.1542/peds.2013-0383
   PubMed Web of Science ®Google Scholar