A total of 31 siblings, aged between 5 and 16 years, of children with a life-limiting condition, participated in a longitudinal, mixed method study. Data collection included standardised psychometric measures and visual and participatory qualitative methods. Emotional functioning and perceptions of self-worth were normative on standardised measures. Qualitative data indicated distinct psychosocial strategies that appeared to underpin functioning, positioning themselves as adults within the family, adopting a role of ‘social glue’ in key relationships and thereby diminishing their own needs, and compartmentalising home and school life. Some strategies appeared adaptive in the short term but may be limiting in the longer term. The implications for professionals working to support families are discussed.
Association of Children with Life-Threatening or Terminal Conditions and Their Families/Royal College of Paediatrics and Child Health (1997) A Guide to the Development of Children’s Palliative Care Services. ACT/RCPCH. Bristol, UK.
2.
BagnoliA (2009) Beyond the standard interview: the use of graphic elicitation and arts-based methods. Qualitative Research, 9(5): 547–570.
3.
BarlowJEllardDR (2006) The psychosocial well-being of children with chronic disease, their parents and siblings: An overview of the research evidence base. Child Care Health and Development32: 19–31.
4.
Bluebond-LangnerM (1996) In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child. Princeton, NJ: Princeton University Press.
5.
ChamberlainKMurrayM (2008) Health psychology. In: WilligCStainton-RogersW (eds) The SAGE Handbook of Qualitative Research in Psychology. London: SAGE: 390–406.
6.
CompasBEConnor-SmithJKSaltzmanH. (2001) Coping with stress during childhood and adolescence: problems, progress, and potential in theory and research. Psychological Bulletin127: 87–127.
7.
CreswellJ (1998) Qualitative Inquiry and Research Design: Choosing among Five Traditions. Thousand Oaks, CA: SAGE.
8.
FismanSWolfLEllisonD. (1996) Risk and protective factors affecting the adjustment of siblings of children with chronic disabilities. Journal of the American Academy of Child and Adolescent Psychiatry35: 1532–1541.
9.
GarmezyN (1985) Stress resistant children: The search for protective factors. In: StevensonJ (ed.) Recent Research in Developmental Psychology, Journal of Child Psychology and Psychiatry (Book Supplement No. 4): 213–233.
10.
GomezRMcLarenS (2006) The association of avoidance coping style, and perceived mother and father support with anxiety/depression among late adolescents: Applicability of resiliency models. Personality and Individual Differences40: 1165–1176.
11.
GoodmanR (1997) The Strengths and Difficulties Questionnaire: A research note. Journal of Child Psychology and Psychiatry38: 581–586.
12.
GoodmanR (2001) Psychometric properties of the Strengths and Difficulties Questionnaire. Journal of the American Academy of Child and Adolescent Psychiatry40: 1337–1345.
13.
GoodmanRFordTSimmonsH. (2000) Using the Strengths and Difficulties Questionnaire (SDQ) to screen for child psychiatric disorders in a community sample. British Journal of Psychiatry177: 534–539.
14.
GoodmanRMeltzerHBaileyV (1998) The Strengths and Difficulties Questionnaire: A pilot study on the validity of the self-report version. European Child & Adolescent Psychiatry7: 125–130.
15.
HarperD (2002) Talking about pictures: A case for photo elicitation. Visual Studies17: 13–26.
16.
HarterS (1985a) Competence as a dimension of self-evaluation. Toward a comprehensive model of self-worth. In: LeahyR (ed.) The Development of the Self. New York: Academic Press: 55–122.
17.
HarterS (1985b) Manual for the Self-Preception Profile for Children. Denver, CO: University of Denver Press.
18.
HorwitzWAKazakAE (1990) Family adaptation to childhood cancer: Sibling and family systems variables. Journal of Clinical Child Psychology19: 221–228.
19.
LamoreyS (1999) Parentification of siblings of children with disability or chronic disease. In: ChaseND (ed.) Burdened Children: Theory, Research, and Treatment of Parentification. Thousand Oaks, CA: SAGE: 75–91.
20.
MadillAJordanAShirleyC (2000) Objectivity and reliability in qualitative analysis: Realist, contextualist, and radical constructionist epistemologies. British Journal of Psychology91: 1–20.
21.
MenezesA (2010) Moments of realization: Life-limiting illness in childhood – Perspectives of children, young people and families. International Journal of Palliative Nursing16: 41–47.
22.
Moran-EllisJAlexanderVDCroninA. (2006) Triangulation and integration: Processes, claims and implications. Qualitative Research6(1): 45–59.
O’ConnorRCO’ConnorDB (2003) Predicting hopelessness and psychological distress: The role of perfectionism and coping. Journal of Counseling Psychology50: 362–372.
25.
ParkesCM (1995) Guidelines for conducting ethical bereavement research. Death Studies19: 171–181.
26.
PennellsMSmithSC (1995) The Forgotten Mourners: Guidelines for Working with Bereaved Children. London: Jessica Kingsley Publishers.
27.
ReadJKinaliMMuntoniF. (2010) Psychosocial adjustment in siblings of young people with Duchenne muscular dystrophy. European Journal of Paediatric Neurology14: 340–348.
28.
RossiterLSharpeD (2001) The siblings of individuals with mental retardation: A quantitative integration of the literature. Journal of Child and Family Studies10: 65–84.
29.
SahlerOJZRoghmannKJMulhernRK. (1997) Sibling adaptation to childhood cancer collaborative study: The association of sibling adaptation with maternal well-being, physical health, and resource use. Journal of Developmental and Behavioral Pediatrics18: 233–243.
30.
Seiffge-KrenkeIKlessingerN (2000) Long-term effects of avoidant coping on adolescents’ depressive symptoms. Journal of Youth and Adolescence29: 617–279.
31.
SharpeDRossiterL (2002) Siblings of children with a chronic illness: A meta-analysis. Journal of Pediatric Psychology27(8): 699–710.
32.
SloperP (2000) Experiences and support needs of siblings of children with cancer. Health & Social Care in the Community8: 298–306.
33.
SpiritoAStarkLJWilliamsC (1988) Development of a brief coping checklist for use with pediatric populations. Journal of Pediatric Psychology13(4): 555–574.
34.
StarksHBrown TrinidadS (2007) Choose your method: A comparison of phenomenology, discourse analysis, and grounded theory. Qualitative Health Research17: 1372–1380.
35.
SteeleRG (2002) Experiences of families in which a child has a prolonged terminal illness: Modifying factors. International Journal of Palliative Nursing8: 418–434.
36.
StrohmK (2004) Siblings: Coming Unstuck and Putting Back the Pieces: Stories of Everyday Life with Children Who Are Different. London: David Fulton Publishers Ltd.
37.
TaylorVFugglePCharmanT (2001) Well sibling psychological adjustment to chronic physical disorder in a sibling: How important is maternal awareness of their illness attitudes and perceptions?Journal of Child Psychology and Psychiatry and Allied Disciplines42: 953–962.
38.
VermaesIPRVan SusanteAMJVan BakelHJA (2012) Psychological functioning of siblings in families of children with chronic health conditions: A meta-analysis. Journal of Pediatric Psychology37: 166–184.
39.
Waite-JonesJMMadillA (2008) Amplified ambivalence: Having a sibling with juvenile idiopathic arthritis. Psychology & Health, 23(4): 477–492.
40.
WilliamsPD (1997) Siblings and pediatric chronic illness: A review of the literature. International Journal of Nursing Studies34(4): 312–323.
