Understanding parent experiences of end-of-life care for children: A systematic review and qualitative evidence synthesis

Abstract

Background: An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support. There is a lack of synthesised research about how parents experience the care delivered to their child at the end of life. Aim: To systematically identify and synthesise qualitative research on parents’ experiences of end-of-life care of their child. Design: A qualitative evidence synthesis was conducted. The review protocol was registered in PROSPERO (CRD42021242946). Data sources: MEDLINE, EMBASE, CINAHL, PsycINFO and Web of Science databases were searched for qualitative studies published post-2000 to April 2020. Studies were appraised for methodological quality and data richness. Confidence in findings was assessed by GRADE-CERQual. Results: About 95 studies met the eligibility criteria. A purposive sample of 25 studies was taken, of good-quality papers with rich data describing the experience of over 470 parents. There were two overarching themes: parents of children receiving end-of-life care experienced a profound need to fulfil the parental role; and care of the parent. Subthemes included establishing their role, maintaining identity, ultimate responsibility, reconstructing the parental role, and continuing parenting after death. Conclusions: Services delivering end-of-life care for children need to recognise the importance for parents of being able to fulfil their parental role and consider how they enable this. What the parental role consists of, and how it’s expressed, differs for individuals. Guidance should acknowledge the need to enable parents to parent at their child’s end of life.

Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study

“…Multiple studies examining parents' experiences note that parents describe their relationships with clinicians as fragile, which has the potential to have a signi cant effect on their relational experience [6,12].Our study indicate that how parents experience clinicians' gaze (i.e. how clinicians see their children and themselves) also has an effect on their perception and their experience of the humane quality of the compassionate support that they receive from clinicians.…”

“…This new identity encompasses both positive and negative changes in family and social support after the irruption of the serious illness. Parents describe this process of creating a new identity for themselves in terms of a form of learning and a change of values as they adapt to this new normality [6, 12,13].…”

“…In the framework of pediatric care programs, palliative care specialists are aware that spirituality should be an integral part of the services offered to seriously ill children and their families, but little is known about the modes of delivering spiritual care [5]. It has been extensively recognized that parents need support to cope with life-threatening diseases of their children [12][13][14]. However, how spirituality and religious beliefs are involved in the integral approach of the palliative care remains to be fully elucidated.…”

Parents’ experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis

“…Parental ability to make decisions is further affected by the situation and circumstances in which the decision-making took place and by the emotional state of parents, including the feeling of being stressed, overwhelmed or in shock. 22,75…”

“…Available systematic reviews in this area have focussed on exploring factors affecting the decision-making process, parents' perception of their role or the level of their involvement, 7,8,10,12,[19][20][21] or their experience with end-of-life care. [22][23][24][25] Furthermore, the available studies tend to distinguish between the four categories of life-limiting conditions, either focussing on parents of children with cancer 12,23,25 or children with complex healthcare needs and disabilities, 7,8 despite evidence that parental experiences of caring for of their child are similar irrespective of the child's condition. 26 Distinguishing among the four categories of life-limiting conditions can hinder the identification of possible similarities in the experience of making decisions about medical care and thus limit our understanding of this phenomenon.…”