Parents’ experiences of raising adolescents with intellectual or developmental disabilities

References

• Ali, A., Scior, K., Ratti, V., Strydom, A., King, M., & Hassiotis, A. (2013). Discrimination and Other Barriers to Accessing Health Care: Perspectives of Patients with Mild and Moderate Intellectual Disability and Their Carers. PLoS ONE 8(8), e70855. https://doi.org/10.1371/journal.pone.0070855
   Google Scholar
• Azeem, M. W., Dogar, I. A., Shah, S., Cheema, M. A., Asmat, A., Akbar, M., Kousar, S., & Haider, I. I. (2013). Anxiety and depression among parents of children with intellectual disability in Pakistan. Journal of the Canadian Academy of Child and Adolescent Psychiatry, 22(4), 290–295.
   PubMedGoogle Scholar
• Beighton, C., & Wills, J. (2017). Are parents identifying positive aspects to parenting their child with an intellectual disability or are they just coping? A qualitative exploration. Journal of Intellectual Disabilities, 21(4), 325–345. https://doi.org/10.1177/1744629516656073
   PubMed Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2013). Successful qualitative research: A practical guide for beginners. SAGE.
   Google Scholar
• Brunnberg, E., Boström, M. L., & Berglund, M. (2012). Sexual force at sexual debut. Swedish adolescents with disabilities at higher risk than adolescents without disabilities. Child Abuse and Neglect, 36(4), 285–295. https://doi.org/10.1016/j.chiabu.2012.01.002
   PubMed Web of Science ®Google Scholar
• Burke, M. M., Patton, K. A., & Taylor, J. L. (2016). Family support: A review of the literature of families of adolescents with disabilities. Journal of Family Social Work, https://doi.org/10.1080/10522158.2016.1214658
   Google Scholar
• Burkhard, A. (2013). A different life: Caring for an adolescent or young adult with severe cerebral palsy. Journal of Pediatric Nursing, 28(4), 357–363. https://doi.org/10.1016/j.pedn.2013.01.001
   PubMed Web of Science ®Google Scholar
• Chickering, A. W., & Schlossberg, N. K. (1995). Getting the most out of college. Allyn & Bacon.
   Google Scholar
• Clarke, V., & Braun, V. (2018). Using thematic analysis in counselling and psychotherapy research: A critical reflection. Counselling and Psychotherapy Research, 18(2), 107–110. https://doi.org/10.1002/capr.12165
   Web of Science ®Google Scholar
• Codd, J., & Hewitt, O. (2020). Having a son or daughter with an intellectual disability transition to adulthood: A parental perspective. British Journal of Learning Disabilities, 00, 1–13. https://doi.org/10.1111/bld.12327
   Google Scholar
• Emerson, E., & Hatton, C. (2007). Mental health of children and adolescents with intellectual disabilities in britain. British Journal of Psychiatry, 191(6), 493–499. https://doi.org/10.1192/bjp.bp.107.038729
   PubMed Web of Science ®Google Scholar
• Hamilton, A., Mazzucchelli, T. G., & Sanders, M. R. (2015). Parental and practitioner perspectives on raising an adolescent with a disability: A focus group study. Disability and Rehabilitation, 37(18), 1664–1673. https://doi.org/10.3109/09638288.2014.973969
   PubMed Web of Science ®Google Scholar
• Hanley-Maxwell, C., Whitney-Thomas, J., & Pogoloff, S. M. (1995). The second shock: A qualitative study of parents’ perspectives and needs during their child's transition from school to adult life. Research and Practice for Persons with Severe Disabilities, 20(1), 3–15. https://doi.org/10.1177/154079699502000102
   Google Scholar
• Heiman, T. (2002). Parents of children with disabilities: Resilience, coping, and future expectations. Journal of Developmental and Physical Disabilities, 13(2), 159–171. https://doi.org/10.1023/A:1015219514621
   Google Scholar
• Isa, S. N. I., Ishak, I., Ab Rahman, A., Mohd Saat, N. Z., Che Din, N., Lubis, S. H., & Mohd Ismail, M. F. (2016). Health and quality of life among the caregivers of children with disabilities: A review of literature. Asian Journal of Psychiatry, 23, 71–77. https://doi.org/10.1016/j.ajp.2016.07.007
   PubMed 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(12), 883–893. https://doi.org/10.1111/j.1365-2788.2006.00906.x
   PubMed Web of Science ®Google Scholar
• Kraemer, B. R., & Blacher, J. (2001). Transition for young adults with severe mental retardation: School preparation, parent expectations, and family involvement. Mental Retardation, 39(6), 423–435. https://doi.org/10.1352/0047-6765(2001)039<0423:TFYAWS>2.0.CO;2
   PubMedGoogle Scholar
• Lahman, M. K. E., Rodriguez, K. L., Moses, L., Griffin, K. M., Mendoza, B. M., & Yacoub, W. (2015). A Rose by any other name is still a Rose? Problematizing pseudonyms in research. Qualitative Inquiry, 21(5), 445–453. https://doi.org/10.1177/1077800415572391
   Web of Science ®Google Scholar
• Lee, L. C., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147–1160. https://doi.org/10.1007/s10803-007-0491-0
   PubMed Web of Science ®Google Scholar
• Lisa-Skär, R. N. (2003). Peer and adult relationships of adolescents with disabilities. Journal of Adolescence, 26(6), 635–649. https://doi.org/10.1016/S0140-1971(03)00061-7
   PubMed Web of Science ®Google Scholar
• Machalicek, W., Lang, R., & Raulston, T. J. (2015). Training parents of children with intellectual disabilities: Trends, issues, and future directions. Current Developmental Disorders Reports, 2(2), 110–118. https://doi.org/10.1007/s40474-015-0048-4
   Google Scholar
• Malapela, R. G., Thupayagale-Tshweneagae, G., & Mashalla, Y. Transition of adolescents with intellectual disability from schools for learners with special educational needs: Parents views for the preparedness. Journal of Applied Research in Intellectual Disabilities, 33(6), 1440–1447. https://doi.org/10.1111/jar.12771
   Google Scholar
• Matson, J. L., Mahan, S., & LoVullo, S. V. (2009). Parent training: A review of methods for children with developmental disabilities. Research in Developmental Disabilities, 30(5), 961–968. https://doi.org/10.1016/j.ridd.2009.01.009
   PubMed Web of Science ®Google Scholar
• Mazzucchelli, T. G., Jenkins, M., & Sofronoff, K. (2018). Building bridges triple P: Pilot study of a behavioural family intervention for adolescents with autism spectrum disorder. Research in Developmental Disabilities, 76, 46–55. https://doi.org/10.1016/j.ridd.2018.02.018
   PubMed Web of Science ®Google Scholar
• McClintock, K., Hall, S., & Oliver, C. (2003). Risk markers associated with challenging behaviours in people with intellectual disabilities: A meta-analytic study. Journal of Intellectual Disability Research, 47(6), 405–416. https://doi.org/10.1046/j.1365-2788.2003.00517.x
   PubMed Web of Science ®Google Scholar
• McConnell, D., Llewellyn, G., & Bye, R. (1997). Providing services for parents with intellectual disability: Parent needs and service constraints. Journal of Intellectual and Developmental Disability, 22(1), 5–17. https://doi.org/10.1080/13668259700033251
   Web of Science ®Google Scholar
• McCubbin, H. I., & Patterson, J. M. (1983). The family stress process. Marriage and Family Review, 6(1–2), 7–37. https://doi.org/10.1300/J002v06n01_02
   Google Scholar
• Mohan, R., & Kulkarni, M. (2018). Resilience in parents of children with intellectual disabilities. Psychology and Developing Societies, 30(1), 19–43. https://doi.org/10.1177/0971333617747321
   Web of Science ®Google Scholar
• Morgan, D. L. (1997). The focus group guidebook. SAGE Publications.
   Google Scholar
• Oeseburg, B., Dijkstra, G. J., Groothoff, J. W., Reijneveld, S. A., & Jansen, D. E. M. C. (2011). Prevalence of chronic health conditions in children With intellectual disability: A systematic literature review. Intellectual and Developmental Disabilities, 49(2), 59–85. https://doi.org/10.1352/1934-9556-49.2.59
   PubMed Web of Science ®Google Scholar
• Pickard, K. E., & Ingersoll, B. R. (2017). Using the double ABCX model to integrate services for families of children with ASD. Journal of Child and Family Studies, 26(3), 810–823. https://doi.org/10.1007/s10826-016-0605-4
   Web of Science ®Google Scholar
• Pozo, P., Sarriá, E., & Brioso, A. (2014). Family quality of life and psychological well-being in parents of children with autism spectrum disorders: A double ABCX model. Journal of Intellectual Disability Research, 58(5), 442–458. https://doi.org/10.1111/jir.12042
   PubMed Web of Science ®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(2), 139–150. https://doi.org/10.1037/a0019473
   PubMed Web of Science ®Google Scholar
• Rinaldi, J. (2013). Reflexivity in research: Disability between the lines. Disability Studies Quarterly, 33(2), Article 2. https://doi.org/10.18061/dsq.v33i2.3711
   Google Scholar
• Robinson, M., & Neece, C. L. (2015). Marital satisfaction, parental stress, and child behavior problems among parents of young children with developmental delays. Journal of Mental Health Research in Intellectual Disabilities, 8(1), 23–46. https://doi.org/10.1080/19315864.2014.994247
   Web of Science ®Google Scholar
• Saloviita, T., Itälinna, M., & Leinonen, E. (2003). Explaining the parental stress of fathers and mothers caring for a child with intellectual disability: A double ABCX model. Journal of Intellectual Disability Research, 47(4–5), 300–312. https://doi.org/10.1046/j.1365-2788.2003.00492.x
   PubMed Web of Science ®Google Scholar
• Shapiro, J., Monzó, L. D., Rueda, R., Gomez, J. A., & Blacher, J. (2004). Alienated advocacy: Perspectives of latina mothers of young adults with developmental disabilities on service systems. Mental Retardation, 42(1), 37–54. https://doi.org/10.1352/0047-6765(2004)42<37:AAPOLM>2.0.CO;2
   PubMedGoogle Scholar
• Staunton, E., Kehoe, C., & Sharkey, L. (2020). Families under pressure: Stress and quality of life in parents of children with an intellectual disability. Irish Journal of Psychological Medicine, 1–8. https://doi.org/10.1017/ipm.2020.4
   Google Scholar
• Tassé, M. J., Schalock, R. L., Balboni, G., Bersani, H., Borthwick-Duffy, S. A., Spreat, S., Thissen, D., Widaman, K. F., & Zhang, D. (2012). The construct of adaptive behavior: Its conceptualization, measurement, and Use in the field of intellectual disability. American Journal on Intellectual and Developmental Disabilities, 117(4), 291–303. https://doi.org/10.1352/1944-7558-117.4.291
   PubMedGoogle Scholar
• Timmons, J. C., Whitney-Thomas, J., McIntyre, J. P., Butterworth, J., & Allen, D. (2004). Managing service delivery systems and the role of parents during their children’s transitions. Journal of Rehabilitation, 70(2), 19–26.
   Web of Science ®Google Scholar
• Weeks, L. E., Nilsson, T., Bryanton, O., & Kozma, A. (2009). Current and future concerns of older parents of sons and daughters with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 6(3), 180–188. https://doi.org/10.1111/j.1741-1130.2009.00222.x
   Web of Science ®Google Scholar