Living through the death of a child: A qualitative study of bereaved parents’ experiences

https://doi.org/10.1016/j.ijnurstu.2011.05.006Get rights and content

Abstract

Design

Cross-sectional qualitative study.

Data sources

Interviews with purposeful sample of 25 recently bereaved parents.

Methods

Semi-structured in-depth interviews.

Results

Four analytically distinct processes were identified in the responses of parents to the death of a child. These are referred to as ‘piloting’, ‘providing’, ‘protecting’ and ‘preserving’. Regardless of individual circumstances, these processes were integral to all parents’ coping, enabling an active ‘doing’ for their child and family throughout the trajectory of their child's illness and into bereavement.

Conclusions

Facilitating the capacity of parents to ‘do’ is central to coping with the stress and uncertainty of living through the death of a child. The provision of informational, instrumental and emotional support by health care professionals in the context of ‘doing’ is core to quality palliative care.

Section snippets

What is already known about the topic?

  • •

    Losing a child is a traumatic and life-changing event for parents.

  • •

    The way a child dies is critical to parental adaption.

  • •

    Caring for their child at the end-of-life is complex and multidimensional.

What this paper adds

  • •

    Parents’ responses to their child's illness are driven by their overwhelming need to actively ‘do’ something purposeful for the child, wider family and themselves.

  • •

    Piloting, providing, protecting and preserving are central to parents’ achievement of this active ‘doing’, enabling coping.

  • •

    Parental focus on piloting, providing, protecting and preserving is evident throughout the entire trajectory of their child's illness, death and beyond.

  • •

    Acknowledgement of their centrality of ‘doing’ through

Methods

Since the fundamental aim of qualitative methodology is to gain an understanding of procedures, processes and events from the ‘actor's viewpoint’ (Silverman, 2006), an interpretive qualitative approach was adopted to explore bereaved parents’ experiences of providing care for children with life-limiting conditions.

Findings

Findings demonstrated how all parents’ responses to their child's illness were driven by the overwhelming need to be actively ‘doing’ something purposeful for their child, wider family and themselves. The themes of piloting, providing, protecting, and preserving, which arose inductively from the data, incorporated ‘types of doing’ and appeared central to parents’ achievement of new patterns of self/family management.

Discussion

Study findings affirm that for all parents living through the loss of a child is a traumatic and life-changing experience (Hayout et al., 1999, Hechter et al., 2001, Saiki-Craighill, 2002). From the first signs of their child's illness to bereavement, mothers and fathers were consistently involved in four key processes of piloting, preserving, protecting and providing. Such strategies were central to their ability to maintain an active ‘doing’, simultaneously helping them to assert control over

Conclusion

The study highlights how parents need to be actively ‘doing’ for their child, themselves and their family as they live through the difficult and painful journey of caring for and losing a child. The processes of piloting, providing, protecting and preserving represent core practical strategies through which this doing is achieved, as parents respond to the circumstances of their dying child's illness and death. Acknowledgement of their centrality to parents’ coping can help nurses and other

Acknowledgements

The study was generously funded by the School of Nursing and Midwifery, Queens University Belfast Sandra Ryan Fellowship.

The authors would like to thank the parents who participated and shared so freely their difficult experiences.

Conflict of interest: None declared.

Funding: Funded internally by the Queen's University Belfast Sandra Ryan Fellowship Scheme.

Ethical approval: Details of ethical scrutiny/approvals were obtained.

References (60)

  • S. Cobb

    Social support as a moderator of life stress

    Psychosomatic Medicine

    (1976)
  • S. Cohen et al.

    Stress, social support, and the buffering hypothesis

    Psychological Bulletin

    (1985)
  • C. Cooley et al.

    Paediatric palliative care: a lack of research-based evidence

    International Journal of Palliative Nursing

    (2000)
  • N. Contro et al.

    Family perspectives on the quality of pediatric palliative care

    Archives of Pediatric Adolescent Medicine

    (2002)
  • N. Contro et al.

    Away from home: experiences of Mexican American families in pediatric palliative care

    Journal of Social Work and End of Life Palliative Care.

    (2010)
  • J. Corbin et al.

    A Nursing model for chronic illness management based upon the trajectory framework

    Scholarly Inquiry for Nursing Practice: An International Journal

    (1991)
  • B. Davies et al.

    Experiences of mothers in five countries whose children died of cancer

    Cancer Nursing

    (1998)
  • B. Davies et al.

    Culturally-sensitive information-sharing in pediatric palliative care

    Pediatrics

    (2010)
  • M. Dixon-Woods et al.

    The problem of appraising qualitative research

    Quality and Safety Health Care

    (2004)
  • K. Dyregov

    Bereaved parents experiences of research participation

    Social Science and Medicine

    (2004)
  • K.E. Edwards et al.

    Understanding of prognosis and goals of care among couples whose child die of cancer

    Journal of Clinical Oncology

    (2008)
  • S. Folkman et al.

    An analysis of coping in a middle aged community sample

    Journal of Health and Social Behaviour

    (1980)
  • A. Goldman et al.

    Palliative care for children with cancer – home, hospital or hospice?

    Archives of Disease in Childhood

    (1990)
  • B.H. Gottlieb

    The development and application of a classification scheme of informal helping behaviours

    Canadian Journal of Behavioural Science

    (1978)
  • J. Green et al.

    Qualitative Methods for Health Research

    (2009)
  • I. Hayout et al.

    A test of parenthood; dilemmas of parents of terminally ill adolescents

    Cancer Nursing

    (1999)
  • S. Hechter et al.

    Life stories with a terminally ill child

    Curatonis

    (2001)
  • P.S. Hinds et al.

    End of life decision making by adolescents, parents and health care professionals in pediatric oncology

    Cancer Nursing

    (2001)
  • J.S. House

    Work Stress and Social Support

    (1981)
  • E.C. Hughes

    Dilemmas and contradictions of status

    American Journal of Sociology

    (1945)

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