The research explores sibling relationships, and the ways in which they are shaped over the life course by family members, in families with a lifelong disability. In-depth, semistructured interviews were conducted with 15 family units including a parent, a sibling, and an adult sibling with a disability. The content analysis revealed five sibling relationship patterns: (a) “Not a child, but a parent caretaker”—the parent–surrogate sibling; (b) “We somehow grew apart”—the estranged sibling; (c) “It is important for me to maintain some kind of distance”—the bystander sibling; (d) “When there’s something they want to tell him, they always send me”—the mediator sibling; and (e) “I love him to death”—the friend sibling. These patterns of adult sibling relationships are discussed in relation to family dynamics, values, and legacies; recommendations for practice and research are made.
ArnoldC. K.HellerT.KramerJ. (2012). Support needs of siblings of people with developmental disabilities. Intellectual and Developmental Disabilities, 50, 373–382.
2.
Band-WintersteinT.EisikovitsZ. (2014). Intimate violence across the lifespan. New York: Springer.
3.
BigbyC. (2008). Beset by obstacles: A review of Australian policy development to support ageing in place for people with intellectual disability. Journal of Intellectual & Developmental Disability, 33, 76–86.
4.
BigbyC.FrawleyP.RamcharanP. (2014). Conceptualizing inclusive research with people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 27, 3–12.
5.
BoerF.DunnJ. (2009). Children’s sibling relationships: Developmental and clinical issues. New York: Psychology Press.
6.
BurbidgeJ.MinnesP. (2014). Relationship quality in adult siblings with and without developmental disabilities. Family Relations, 63, 148–162. doi:10.1111/fare.12047
7.
BurkeP. (2010). Brothers and sisters of disabled children: The experience of disability by association. The British Journal of Social Work, 40, 1681–1699. doi:10.1093/bjsw/bcp088
8.
CampbellL. D.ConnidisI. A.DaviesL. (1999). Sibling ties in later life: A social network analysis. Journal of Family Issues, 20, 114–148. doi:10.1177/019251399020001006
9.
CarrD.SpringerK. W. (2010). Advances in families and health research in the 21st century. Journal of Marriage and Family, 72, 743–761.
10.
CassidyE.ReynoldsD. F.NaylorD. S.SouzaP. L. D. (2011). Using interpretative phenomenological analysis to inform physiotherapy practice: An introduction with reference to the lived experience of cerebellar ataxia. Physiotherapy Theory and Practice, 27, 263–277. doi:10.3109/09593985.2010.488278
11.
ChristensenD.Van Naarden BraunK.DoernbergN. S.MaennerM. J.ArnesonC. L.DurkinM. S.. . . AllsoppM. (2014). Prevalence of cerebral palsy, co-occurring autism spectrum disorders, and motor functioning—Autism and Developmental Disabilities Monitoring Network, USA, 2008. Developmental Medicine & Child Neurology, 56, 59–65.
12.
CicirelliV. (2013). Sibling relationships across the life span. New York: Springer Science + Business Media.
13.
ClausenJ. A. (1986). The life course: A sociological perspective. Englewood Cliffs, NJ: Prentice Hall.
14.
ConnorsC.StalkerK. (2003). The views and experiences of disabled children and their siblings: A positive outlook. London: Jessica Kingsley.
15.
CurranM.OgolskyB.HazenN.BoschL. (2011). Understanding marital conflict 7 years later from prenatal representations of marriage. Family Process, 50, 221–234.
16.
DewA.BalandinS.LlewellynG. (2008). The psychosocial impact on siblings of people with lifelong physical disability: A review of the literature. Journal of Developmental and Physical Disabilities, 20, 485–507. doi:10.1007/s10882-008-9109-5
17.
Dickson-SwiftV.JamesE. L.KippenS.LiamputtongP. (2007). Doing sensitive research: What challenges do qualitative researchers face?Qualitative Research, 7, 327–353. doi:10.1177/1468794107078515
18.
DillenburgerK.McKerrL. (2011). “How long are we able to go on?” Issues faced by older family caregivers of adults with disabilities. British Journal of Learning Disabilities, 39, 29–38. doi:10.1111/j.1468-3156.2010.00613.x
19.
DoodyM. A.HastingsR. P.O’NeillS.GreyI. M. (2010). Sibling relationships in adults who have siblings with or without intellectual disabilities. Research in Developmental Disabilities, 31, 224–231. doi:10.1016/j.ridd.2009.09.007
20.
DoyleL. W.AndersonP. J.BurnettA.CallananC.McDonaldM.HayesM.. . . CheongJ. L. (2018). Developmental disability at school age and difficulty obtaining follow-up data. Pediatrics, 141, e20173102. doi:10.1542/peds.2017-3102
21.
EisikovitsZ.KorenC. (2010). Approaches to and outcomes of dyadic interview analysis. Qualitative Health Research, 20, 1642–1655.
22.
ElderG. H.Jr. (1998). The life course as developmental theory. Child Development, 69, 1–12. doi:10.1111/j.1467-8624.1998.tb06128.x
23.
ElderG. H.GieleJ. Z. (Eds.). (2009). The craft of life course research. New York: Guilford Press.
24.
EsbensenA. J.SeltzerM. M.KraussM. W. (2012). Life course perspectives in intellectual disability research: The case of family. In BurackJ. A.HodappR. M.IarocciG.ZiglerE. (Eds.), The Oxford handbook of intellectual disability and development (pp. 380–391). New York: Oxford University Press.
25.
FarrellA. F.KrahnG. L. (2014). Family life goes on: Disability in contemporary families. Family Relations, 63, 1–6.
26.
FinleyS. (2011). Critical arts-based inquiry: The pedagogy and performance of a radical ethical aesthetic. In DenzinN.LincolnY. (Eds.), The SAGE handbook of qualitative research (4th ed., pp. 435–450). Thousand Oaks, CA: Sage.
27.
GibbonsH. M.GibbonsC. M. (2016). Siblings with disabilities: A duoethnography on the intersections between a sibling relationship and disability. Disability & Society, 31, 820-837.
28.
GoodleyD.TregaskisC. (2006). Storying disability and impairment: Retrospective accounts of disabled family life. Qualitative Health Research, 16, 630–646.
29.
HaJ. H.HongJ.SeltzerM. M.GreenbergJ. S. (2008). Age and gender differences in the well-being of midlife and aging parents with children with mental health or developmental problems: Report of a national study. Journal of Health and Social Behavior, 49, 301–316.
30.
HagestadG. O.SetterstenR. A.Jr. (2003). Invitation to the life course: Toward new understandings of later life. Amityville, NY: Baywood.
31.
HammelJ.LaiJ. S.HellerT. (2002). The impact of assistive technology and environmental interventions on function and living situation status with people who are ageing with developmental disabilities. Disability and Rehabilitation, 24, 93–105.
32.
HeideggerM.KrellD. F. (1980). Basic writings–nine key essays, plus the introduction to being and time. New York: HarperCollins.
33.
HellerT.ArnoldC. K. (2010). Siblings of adults with developmental disabilities: Psychosocial outcomes, relationships, and future planning. Journal of Policy and Practice in Intellectual Disabilities, 7, 16–25. doi:10.1111/j.1741-1130.2010.00243.x
34.
HirschbergerR. G.KubanK. C.O’SheaT. M.JosephR. M.HeerenT.DouglassL. M.. . . PanethN. (2018). Co-occurrence and severity of neurodevelopmental burden (cognitive impairment, cerebral palsy, autism spectrum disorder, and epilepsy) at age ten years in children born extremely preterm. Pediatric Neurology, 79, 45–52.
35.
HodappR. M.GliddenL. M.KaiserA. P. (2005). Siblings of persons with disabilities: Toward a research agenda. Mental Retardation, 43, 334–338. doi:10.1352/0047-6765(2005)43[334:SSOSEB]2.0.CO;2
36.
HodappR. M.UrbanoR. C.BurkeM. M. (2010). Adult female and male siblings of persons with disabilities: Findings from a national survey. Intellectual and Developmental Disabilities, 48, 52–62. doi:10.1352/1934-9556-48.1.52
37.
Jeppsson-GrassmanE.WhitakerA. (Eds.). (2013). Ageing with disability: A lifecourse perspective. Bristol, UK: Policy Press.
38.
KaufmanG.UhlenbergP. (1998). Effects of life course transitions on the quality of relationships between adult children and their parents. Journal of Marriage and Family, 60, 924–938. doi:10.2307/353635
39.
KavanaughK.AyresL. (1998). “Not as bad as it could have been”: Assessing and mitigating harm during research interviews on sensitive topics. Research in Nursing & Health, 21, 91–97.
40.
KizzaD.HjelmelandH.KinyandaE.KnizekB. L. (2011). Qualitative psychological autopsy interviews on suicide in post-conflict Northern Uganda: The participants’ perceptions. Omega —Journal of Death and Dying, 63, 235–254.
41.
KudelaC. (2012). Sibling relationships of adults with intellectual and developmental disability (Master of Social Work Clinical Research Papers, St. Catherine University). Retrieved from http://sophia.stkate.edu/msw_papers/127
42.
LeeC. E.BurkeM. M. (2018). Caregiving roles of siblings of adults with intellectual and developmental disabilities: A systematic review. Journal of Policy and Practice in Intellectual Disabilities, 15, 237–246.
43.
LiamputtongP. (2007). Researching the vulnerable: A guide to sensitive research methods. London: Sage.
44.
LincolnY. S.GubaE. G. (2013). The constructivist credo. Walnut Creek, CA: Left Coast Press.
45.
MacmillanR.CopherR. (2005). Families in the life course: Interdependency of roles, role configurations, and pathways. Journal of Marriage and Family, 67, 858–879.
46.
MalterudK.SiersmaV. D.GuassoraA. D. (2016). Sample size in qualitative interview studies: Guided by information power. Qualitative Health Research, 26, 1753–1760.
47.
Marchetti-MercerM. C. (2012). Those easily forgotten: The impact of emigration on those left behind. Family Process, 51, 376–390.
48.
McGoldrickM.CarterB. (2003). The family life cycle. In WalshF. (Ed.), Normal family processes: Growing diversity and complexity (pp. 375–398). New York: Guilford Press.
49.
McHaleS. M.UpdegraffK. A.WhitemanS. D. (2012). Sibling relationships and influences in childhood and adolescence. Journal of Marriage and Family, 74, 913–930. doi:10.1111/j.1741-3737.2012.01011.x
50.
MeltzerA.KramerJ. (2016). Siblinghood through disability studies perspectives: Diversifying discourse and knowledge about siblings with and without disabilities. Disability & Society, 31, 17–32. doi:10.1080/09687599.2015.1127212
51.
MilkieM. A.BiermanA.SchiemanS. (2008). How adult children influence older parents’ mental health: Integrating stress-process and life-course perspectives. Social Psychology Quarterly, 71, 86–105.
52.
MorseJ. M. (1995). The significance of saturation [Editorial]. Qualitative Health Research, 5, 147–148.
53.
MorseJ. M. (2000). Determining sample size. Qualitative Health Research, 10, 3–5.
PriestleyM. (2003). Disability: A life course approach. Cambridge, UK: Polity Press.
56.
RainaP.O’DonnellM.RosenbaumP.BrehautJ.WalterS. D.RussellD.. . . WoodE. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115, e626–e636. doi:10.1542/peds.2004-1689
57.
ReczekC. (2014). Conducting a multi family member interview study. Family Process, 53, 318–335. doi:10.1111/famp.12060
58.
RobinsonC. A. (2017). Families living well with chronic illness: The healing process of moving on. Qualitative Health Research, 27, 447–461.
59.
RoperS. O.AllredD. W.MandlecoB.FreebornD.DychesT. (2014). Caregiver burden and sibling relationships in families raising children with disabilities and typically developing children. Families, Systems, & Health, 32, 241–246. doi:10.1037/fsh0000047
60.
RossettiZ.HallS. (2015). Adult sibling relationships with brothers and sisters with severe disabilities. Research and Practice for Persons With Severe Disabilities, 40, 120–137.
61.
SandersR. (2004). Sibling relationships: Theory and issues for practice. Houndmills, UK: Palgrave Macmillan.
62.
SaundersB.SimJ.KingstoneT.BakerS.WaterfieldJ.BartlamB.. . . JinksC. (2018). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality & Quantity, 52, 1893–1907.
63.
ScorgieK. (2017). Broadening family perspectives: The experiences of fathers and siblings when a child has chronic illness or disability. In ScorgieK.SobseyD. (Eds.), Working with families for inclusive education: Navigating identity, opportunity and belonging (pp. 97–113). Bingley, UK: Emerald.
64.
SeltzerM. M.GreenbergJ. S.OrsmondG. I.LoundsJ. (2005). Life course studies of siblings of individuals with developmental disabilities. Mental Retardation, 43, 354–359.
65.
SingletonJ.DarcyS. (2013). “Cultural life,” disability, inclusion and citizenship: Moving beyond leisure in isolation. Annals of Leisure Research, 16, 183–192.
66.
SlotaN.MartinD. (2003). Methodological considerations in life course theory research. Disability Studies Quarterly, 23(2), 19–29.
StevensM. M.LordB. A.ProctorM. T.NagyS.O’RiordanE. (2010). Research with vulnerable families caring for children with life-limiting conditions. Qualitative Health Research, 20, 496–505.
69.
StonemanZ. (2005). Siblings of children with disabilities: Research themes. Mental Retardation, 43, 339–350.
70.
TaylorJ. L.GreenbergJ. S.SeltzerM. M.FloydF. J. (2008). Siblings of adults with mild intellectual deficits or mental illness: Differential life course outcomes. Journal of Family Psychology, 22, 905–914. doi:10.1037/a0012603
71.
WoffordJ. R.CarlsonR. G. (2017). A literature review and case study on the strengths and struggles of typically developing siblings of persons with disabilities. The Family Journal, 25, 398–406. doi:10.1177/1066480717732167
