Research in practice

What support do parents need when their child is receiving end of life care?

How nurses can support the parents of terminally ill children

How nurses can support the parents of terminally ill children
This literature review was written as part of Poppy Croucher’s undergraduate degree

RIP
Picture: Alamy

Background

End of life care is a critical part of children’s nursing as demonstrated by the fact that, in 2017, 4,415 children and young people died in the UK (Office for National Statistics 2018). Terminally ill children do not receive satisfactory care, however, due to insufficient training of nurses (RCN 2015), and the charity Together for Short Lives (2018) identifies that further improvements for end of life care are needed.

This literature review aimed to identify parental support needs during their child's end of life care and to provide recommendations for future practice, education and research.

Method

The framework Population, Intervention, Comparison and Outcome was used to develop the research question considered in this literature review (Considine et al 2017). A facet analysis was conducted to develop search terms, which were used in three databases: CINAHL, Medline and Psych Info. Hand searching of one journal and reference lists of relevant papers was also undertaken (Boland et al 2017). Inclusion criteria were primary research involving qualitative or mixed methods published after 2008. Identified papers were critically appraised before inclusion.

Findings

Seven papers were included in the literature review and four themes were identified:

  • Appropriate support from professionals in recognition of the help parents require from professionals before and after their child’s death.
  • Parental role maintenance, which concerns how parents want to be supported so they can continue to help with their child’s care. If a collaborative partnership between parents and professionals is not established, parents can think they have lost a role and that professionals have control.
  • Parental decision making, which refers to the support parents need to help them make choices about their child’s end of life care. Parents find this one of the most difficult aspects of end of life care and are grateful for professional support.
  • Effective communication, which concerns the information provided by healthcare professionals that parents find useful. It is imperative that knowledgeable professionals give information in a timely manner. Communication determined whether parents view the support they receive as effective.

Implications for practice

The literature review offers a comprehensive account of parental support needs when their children receive end of life care. Although every family is unique, the review provides themes that are illustrated in all seven of the papers. The findings indicate further education is needed to assist nurses, including nursing students, to support families, children and young people during end of life care.

Together for Short Lives (2012) provides detailed information on end of life care and the author recommends that professionals refer to it to support their practice. Future research should focus on why end of life care training is not being implemented sufficiently, and on nurses’ views about their training and confidence to provide end of life care.

Reflection

This literature review gave the author a greater understanding of research and evidence-based practice, and how to develop critical appraisal skills. It also re-affirmed the importance of providing high quality end of life care.  

References


About the authors

Poppy Croucher was a final year nursing student at City University of London at the time of writing and is now a staff nurse in the cardiac intensive care, Great Ormond Street Hospital for Children NHS Foundation Trust, London
Ellie Taylor is a lecturer, City University of London

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