Comparing the needs of families of children dying from malignant and non-malignant disease: an in-depth qualitative study

Abstract

Objective: To examine the experiences of bereaved parents concerning the care provided to children who died from cancer compared to those who died from a nonmalignant condition.Design: An in-depth qualitative study with bereaved parents of children who died as a result of a life limiting diagnosis, recruited through two regional centres.Results: Although parents' accounts displayed commonalities, key differences were discernible. Typically, parents of children with cancer considered care at the end of life as well resourced and responsive to their and their child's needs. In contrast, parents of children with non-malignant conditions reported under-resourced and inadequately responsive services. Although both groups of parents called extensively on military metaphors such as 'battle', 'fight' and 'struggle', the focus of their respective energies was different. In the one case the adversary was disease and illness; in the other it was service providers and service provision. Conclusions:Community based services for children and young people with cancer at the end-of-life were perceived by parents as responsive to parent and child needs. Conversely, community services for children and young people with non-malignant conditions were experienced as ad hoc and under-resourced. Community services for children with non-malignant conditions may require further development if they are to meet the levels of support offered to parents of children with cancer. If improvement is to be achieved, the need to raise awareness regarding hospice services, hospice referral and eligibility criteria across the entire gamut of service providers is essential.

The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis

“…The first study explored the experiences of health and social care professionals caring for children at the end of life (Price et al . , , Price et al . ).…”

Children’s unmet palliative care needs: a scoping review of parents’ perspectives

“…As expected, methods varied inclusive of: questionnaires33 34 38 40 42 45 47 48 50 55 57 59 65–67 71 74 75 77 self-report measures,31 48 59 in-depth interviews via different mediums (face to face/telephone)27–30 32 35–46 49 51–54 56 58–60 62–66 68–70 72 73 75 76 78–80 focus groups,27 38 41 50 52 56 61 65 70 79 an audit of nursing a psychology records34 and art-based workshops 75. The majority of studies used mixed-methods approaches to collect data.…”

“…The scoping review identification process highlighted 48 studies which discussed the unmet needs of children with LLCs and their families from the parent’s perspective 15 27–73. The references of these 48 studies were then hand-searched by GC, identifying seven further studies meeting the inclusion criteria 74–80.…”

“…The included articles were conducted in 16 locations internationally: UK,15 27 29 34 38–40 48 51 55 56 59 61 64 65 68 72 74 75 81 USA,30 32 35 37 44 52 58 60 66 77–80 Australia,45–47 54 57 76 31 43, Canada,49 53 58, Germany, 31 43 Switzerland,36 67 The Netherlands,63 73 Brazil,69 Indonesia,70 Lebanon,71 India,28 Sweden/Denmark,33 Malaysia,41 Hong Kong,42 and Cameroon 62. The UK, followed by the USA, Australia, and Canada, were the largest contributors to scoping review.…”

“…Parent samples ranged from n=2 to n=272 and were published between 1989 and 2019. While all studies sampled parents of children with LLCs, the majority used a parent-only sample28 29 31–37 40–44 46–51 53–55 57 58 63 64 66–69 72 73 76–78 80; others sampled both parents and some of the children with an 61 71 75 LLC; some sampled children, parents and professionals27 39 52 62; and the remaining studies sampled parents and professionals 30 38 45 56 59 60 65 70 74 79. While all studies discussed needs from the perspective of parents of a life-limited child, several of these accounts were retrospective experiences from bereaved parents 32 36 37 41 43 44 46 47 55 58 60 66 67 69 76–79 82.…”