This study intends to move beyond the parent–child dichotomy to study the experience of chronic illness within the family setting by also focusing on young siblings. The study will mobilize the accounts of both mothers and siblings of children with a life-limiting illness to understand the biographical impact of a critical situation. Seven siblings and five mothers participated in the research. In-depth interviews and interviews using the ‘draw-write and tell’ technique were conducted. The biographical experiences presented in this article are shaped by several factors within the context of personal circumstances, namely of social relationships and interconnectedness. We propose the concept of ‘mother-sibling-biographical disruption’: both mothers and siblings of children with a life-limiting illness had to redefine themselves. The study intends to offer insights into the sociology of health and illness by extending current research on family experiences of having a child with a life-limiting illness, in particular of sibling relationships.
AgerskovHThiessonHCPedersenBD (2021) Siblings of children with chronic kidney disease: A qualitative study of everyday life experiences. Journal of Renal Care47(4): 242–249.
2.
AldridgeJ (2018) Where are we now? Twenty-five years of research, policy and practice on young carers. Critical Social Policy38(1): 155–165.
3.
ArberSGinnJ (1999) Gender differences in informal caring. In: AllanG (ed.) The Sociology of the Family: A Reader. Oxford: Blackwell Publishers, pp. 321–339.
4.
BengtsonVLElderGHJrPutneyNM (2012) The life course perspective on ageing: Linked lives, timing and history. In: KatzJPeaceSSpurrS (eds) Adult Lives: A Life Course Perspective. Bristol: Policy Press, pp. 9–17.
5.
Bluebond-langnerM (1991) Living with cystic fibrosis: The well sibling’s perspective. Medical Anthropology Quarterly5(2): 133–152.
6.
BoyleGConstantinouGGarciaR (2023) Does gender influence children’s and young people’s caring? A qualitative, systematic review and meta-ethnography. Children & Society37(2): 404–423.
7.
BraunVClarkeV (2006) Using thematic analysis in psychology. Qualitative Research in Psychology3(2): 77–101.
8.
BrayLKirkSCalleryP (2014) Developing biographies: The experiences of children, young people and their parents of living with a long-term condition. Sociology of Health & Illness36(6): 823–839.
9.
BuryM (1982) Chronic illness as biographical disruption. Sociology of Health & Illness4(2): 167–182.
10.
DaviesK (2015) Siblings, stories and the self: The sociological significance of young people’s sibling relationships. Sociology49(4): 679–695.
11.
DeavinAGreasleyPDixonC (2018) Children’s perspectives on living with a sibling with a chronic illness. Pediatrics142(2): e20174151.
12.
Dixon-WoodsMYoungBHeneyD (2005) Rethinking Experiences of Childhood Cancer: A Multidisciplinary Approach to Chronic Childhood Illness. Berkshire: Open University Press.
13.
DonorfioLSheehanN (2001) Relationship dynamics between aging mothers and caregiving daughters: Filial expectations and responsibilities. Journal of Adult Development8(1): 39–49.
14.
EdwardsRMauthnerMHadfieldL (2005) Children’s sibling relationships and gendered practices: Talk, activity and dealing with change. Gender and Education17(5): 499–513.
15.
EvansR (2011) ‘We are managing our own lives. . .’: Life transitions and care in sibling-headed households affected by AIDS in Tanzania and Uganda. Area43(4): 384–396.
16.
GiddensA (1979) Central Problems in Social Theory. London: Hutchinson.
17.
GrinyerA (2007) The biographical impact of teenage and adolescent cancer. Chronic Illness3(4): 265–277.
18.
HardenJ (2005) Parenting a young person with mental health problems: Temporal disruption and reconstruction. Sociology of Health & Illness27(3): 351–371.
19.
HilárioAP (2015) Making sense of a changed physical body: Why gender matters at end of life. Journal of Aging Studies33: 58–66.
20.
HilárioAP (2022) When pain never goes away: Understanding the lived experiences of children with chronic pain and their parents in Portugal. Children & Society36(5): 840–856.
21.
HillSAZimmermanMK (1995) Valiant girls and vulnerable boys: The impact of gender and race on mothers’ caregiving for chronically ill children. Journal of Marriage and the Family57(1): 43–53.
22.
KeladaLWakefieldCDrewD, et al. (2022) Siblings of young people with chronic illness: Caring responsibilities and psychosocial functioning. Journal of Child Health Care26(4): 581–596.
23.
KnechtCHellmersCMetzingS (2015) The perspective of siblings of children with chronic illness. A literature review. Journal of Pediatric Nursing30(1): 102–116.
24.
KosonenM (1996) Siblings as providers of support and care during middle childhood: Children’s perceptions. Children & Society10(4): 267–279.
25.
MasonJ (2004) Personal narratives, relational selves: Residential histories in the living and telling. Sociological Review52(2): 162–179.
26.
MiloFRanocchiariSLucidiV, et al. (2021) Coping with cystic fibrosis: An analysis from the sibling’s point of view. Child: Care, Health and Development47(6): 825–833.
27.
MonaghanLFGabeJ (2015) Chronic illness as biographical contingency? Young people’s experiences of asthma. Sociology of Health & Illness37(8): 1236–1253.
28.
PalsRASCoyneIGrabowskiD (2020) «I don’t feel that I can complain about my brother’s diabetes»: Siblings’ participation in diabetes care. Children’s Research Digest2020: 39–43.
29.
PalsRASCoyneISkinnerT, et al. (2021) A delicate balance between control and flexibility: Experiences of care and support among pre-teenage children with type 1 diabetes and their families. Sociology of Health & Illness43(2): 369–391.
30.
PokuBAPilnickA (2022) Biographical accounts of the impact of fatigue in young people with sickle cell disease. Sociology of Health & Illness44(6): 1027–1046.
31.
PunchS (2001) Household division of labour: Generation, gender, age, birth order and sibling composition. Work, Employment & Society15(4): 803–823.
32.
RasmussenPSPedersenIKPagsbergAK (2020) Biographical disruption or cohesion? How parents deal with their child’s autism diagnosis. Social Science and Medicine244: 112673.
33.
ReadJKinaliMMuntoniF, et al. (2011) Siblings of young people with Duchenne muscular dystrophy – A qualitative study of impact and coping. European Journal of Paediatric Neurology15(1): 21–28.
34.
SmartC (2007) Personal Life: New Directions in Sociological Thinking. Cambridge: Polity Press.
35.
SmythCCassBHillT (2011) Children and young people as active agents in care-giving: Agency and constraint. Children and Youth Services Review33(4): 509–514.
Van SchoorsMDe MolJLaeremansN, et al. (2019) Siblings’ experiences of everyday life in a family where one child is diagnosed with blood cancer: A qualitative study. Journal of Pediatric Oncology Nursing36(2): 131–142.
38.
WallKCunhaVAtalaiaS, et al. (2016) Livro Branco. Homens e Igualdade de Género em Portugal. Lisboa: Instituto de Ciências Sociais / Comissão para a Igualdade no Trabalho e no Emprego. Available at: https://repositorio.ul.pt/handle/10451/26649
39.
WebsterM (2018) Siblings’ caring roles in families with a child with epilepsy. Sociology of Health & Illness40(1): 204–217.
40.
WikleJSJensenACHoaglandAM (2018) Adolescent caretaking of younger siblings. Social Science Research71: 72–84.
41.
WilkinsKLWoodgateRL (2005) A review of qualitative research on the childhood cancer experience from the perspective of siblings: A need to give them a voice. Journal of Pediatric Oncology Nursing22(6): 305–319.
42.
WilliamsBCorlettJDowellJS, et al. (2009) «I’ve never not had it so I don’t really know what it’s like not to»: Nondifference and biographical disruption among children and young people with cystic fibrosis. Qualitative Health Research19(10): 1443–1455.
43.
WilliamsBMukhopadhyaySDowellJ, et al. (2007) From child to adult: An exploration of shifting family roles and responsibilities in managing physiotherapy for cystic fibrosis. Social Science and Medicine65(10): 2135–2146.
44.
WilliamsC (2000a) Alert assistants in managing chronic illness: The case of mothers and teenage sons. Sociology of Health & Illness22(2): 254–272.
45.
WilliamsS (2000b) Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health & Illness22(1): 40–67.
46.
WoodgateRL (2006) Life is never the same: Childhood cancer narratives. European Journal of Cancer Care15(1): 8–18.
47.
YoungBDixon-WoodsMFindlayM, et al. (2002) Parenting in a crisis: Conceptualising mothers of children with cancer. Social Science and Medicine55(10): 1835–1847.
