Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study

Abstract

Background:

Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports.

Aim:

To provide an in-depth exploration of the prevalent lived experiences of parents who are currently providing care for a child with a life-limiting condition in Australia.

Design:

Cross-sectional, prospective, qualitative study guided by an advisory group and reported according to the consolidated criteria for reporting qualitative studies. Transcripts were subjected to a thematic analysis, underpinned by an interpretative phenomenological framework.

Setting/participants:

Purposively sampled parents (n = 14) recruited from a statewide paediatric hospice who self-identified as a ‘primary caregiver’ for one or more children and/or adolescents (⩽18 years) with a life-limiting condition.

Results:

Four key themes represented the prevalent experiences of parents: (1) trapped inside the house, (2) the protector, (3) living with the shadow and (4) travelling a different pathway. They describe parents’ physical and social isolation, exclusion from the workforce, pervasive grief and associated impacts to their health and well-being. Limited professional and diminished social supports resulted in full ownership of care responsibility. Yet, parents embraced their role as ‘protector’, reporting acquired meaning and purpose.

Conclusion:

This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers.

Keywords

Paediatric palliative care life-limiting condition qualitative caregiver experiences

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References

Hynson

Gillis

Collins

. The dying child: how is care different? Med J Aust 2003; 179(6): S20–S22.

Association for Children’s Palliative Care (ACT). A guide to the development of children’s paediatric services, 3rd ed. Bristol: ACT, 2009.

Wood

Simpson

Barnes

. Disease trajectories and ACT/RCPCH categories in paediatric palliative care. Palliat Med 2010; 24(8): 796–806.

Fraser

Lidstone

Miller

. Patterns of diagnoses among children and young adults with life-limiting conditions: a secondary analysis of a national dataset. Palliat Med 2014; 28(6): 513–520.

Fraser

Miller

Hain

. Rising national prevalence of life-limiting conditions in children in England. Pediatrics 2012; 129(4): e923–e929.

Liben

Papadatou

Wolfe

. Paediatric palliative care: challenges and emerging ideas. Lancet 2008; 371(9615): 852–864.

Brehaut

Kohen

Garner

. Health among caregivers of children with health problems: findings from a Canadian population-based study. Am J Public Health 2009; 99(7): 1254–1262.

Remedios

Willenberg

Zordan

. A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions. Palliat Med 2015; 29(3): 223–230.

Precht

Mortensen

. Mortality in parents after death of a child in Denmark: a nationwide follow-up study. Lancet 2003; 361(9355): 363–367.

10.

Sloper

. Predictors of distress in parents of children with cancer: a prospective study. J Pediatr Psychol 2000; 25(2): 79–91.

11.

Wiedebusch

Konrad

Foppe

. Health-related quality of life, psychosocial strains, and coping in parents of children with chronic renal failure. Pediatr Nephrol 2010; 25(8): 1477–1485.

12.

Schneider

Steele

Cadell

. Differences on psychosocial outcomes between male and female caregivers of children with life-limiting illnesses. J Pediatr Nurs 2011; 26(3): 186–199.

13.

Klassen

Klaassen

Dix

. Impact of caring for a child with cancer on parents’ health-related quality of life. J Clin Oncol 2008; 26(36): 5884–5889.

14.

Goldbeck

. The impact of newly diagnosed chronic paediatric conditions on parental quality of life. Qual Life Res 2006; 15(7): 1121–1131.

15.

Monterosso

Kristjanson

. Supportive and palliative care needs of families of children who die from cancer: an Australian study. Palliat Med 2008; 22(1): 59–69.

16.

Monterosso

Kristjanson

Aoun

. Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service. Palliat Med 2007; 21(8): 689–696.

17.

Mitchell

Clarke

Sloper

. Survey of psychosocial support provided by UK paediatric oncology centres. Arch Dis Child 2005; 90(8): 796–800.

18.

Kirk

Pritchard

. An exploration of parents’ and young people’s perspectives of hospice support. Child Care Health Dev 2012; 38(1): 32–40.

19.

Horrocks

Somerset

Salisbury

. Do children with non-malignant life-threatening conditions receive effective palliative care? A pragmatic evaluation of a local service. Palliat Med 2002; 16(5): 410–416.

20.

Barlow

Ellard

. The psychosocial well-being of children with chronic disease, their parents and siblings: an overview of the research evidence base. Child Care Health Dev 2006; 32(1): 19–31.

21.

Price

Jordan

Prior

. Comparing the needs of families of children dying from malignant and non-malignant disease: an in-depth qualitative study. BMJ Support Palliat Care 2012; 2(2): 127–132.

22.

Rallison

Raffin-Bouchal

. Living in the in-between: families caring for a child with a progressive neurodegenerative illness. Qual Health Res 2013; 23(2): 194–206.

23.

Steele

Davies

. Impact on parents when a child has a progressive, life-threatening illness. Int J Palliat Nurs 2006; 12(12): 576–585.

24.

Kars

Grypdonck

de Korte-Verhoef

. Parental experience at the end-of-life in children with cancer: ‘preservation’ and ‘letting go’ in relation to loss. Support Care Cancer 2011; 19(1): 27–35.

25.

Gannoni

Shute

. Parental and child perspectives on adaptation to childhood chronic illness: a qualitative study. Clin Child Psychol Psychiatry 2010; 15(1): 39–53.

26.

Heath

Clarke

McCarthy

. Quality of care at the end of life in children with cancer. J Paediatr Child Health 2009; 45(11): 656–659.

27.

Connor

Kline

Mott

. The meaning of cost for families of children with congenital heart disease. J Pediatr Health Care 2010; 24(5): 318–325.

28.

Tong

Sainsbury

Craig

. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health C 2007; 19(6): 349–357.

29.

Smith

Jarman

Osborn

. Interpretative phenomenological analysis. In: Murray

Chamberlain

(eds) Qualitative health psychology: theories and methods. London; Thousand Oaks, CA: SAGE, 1999, pp. 218–240.

30.

Braun

Clarke

. Using thematic analysis in psychology. Qual Res Psychol 2006; 3(2): 77–101.

31.

Price

Jordan

Prior

. Living through the death of a child: a qualitative study of bereaved parents’ experiences. Int J Nurs Stud 2011; 48(11): 1384–1392.

32.

Heath

Lintuuran

Rigguto

. Childhood cancer: its impact and financial costs for Australian families. Pediatr Hematol Oncol 2006; 23(5): 439–448.

33.

Dussel

Bona

Heath

. Unmeasured costs of a child’s death: perceived financial burden, work disruptions, and economic coping strategies used by American and Australian families who lost children to cancer. J Clin Oncol 2011; 29(8): 1007–1013.