The perspectives of children and young people affected by parental life-limiting illness: An integrative review and thematic synthesis

Abstract

Background: Although the death of a parent during childhood is relatively commonplace, the voices of children affected by parental life-limiting illness are under-represented in research evidence. Guidance for healthcare professionals is largely based upon professional opinion rather than the experience of children themselves. Aim: To synthesise and appraise the literature from primary research with children about their experience of having a parent with a life-limiting illness. Design: Integrative review and thematic synthesis. Registered on PROSPERO (CRD42019094581). Data sources: PsychINFO, Medline, Embase, Scopus and Web of Science were searched, supplemented by searches of grey literature and systematic reviews. There were no restrictions on publication date, and study quality was appraised using the Hawker checklist. Studies reporting the findings of primary research with participants under 18, whose parent has a life-limiting illness, were eligible for inclusion. Results: Twenty-one papers met the inclusion criteria ( n = 13 qualitative; n = 8 quantitative), reporting on n = 18 studies from high-income countries. Findings reveal that throughout parental life-limiting illness, children strive for agency, but are often shielded and excluded by adults. The experience of living with a dying parent is emotionally demanding for children and involves significant caregiving responsibilities. However these children are not passive, developing strategies to cope with the situation and wanting to be involved. Conclusions: The review has enabled the voices of children affected by parental life-limiting illness to be heard and will inform the development of guidance for parents and professionals.

Parental perspectives on the grief and support needs of children and young people bereaved during the Covid-19 pandemic: Qualitative findings from a national survey

“…However, a couple of parents felt that their children needed more sessions than the allocated amount, noting how they could not afford to pay for private sessions, as well as their child's concerns about having to connect and repeat the process with a different counsellor. In terms of the bereavement challenges and difficulties experienced by children and young people, these findings point to the compounding effects of pre-existing mental health conditions and other recent close bereavements, as well as previously observed communication and emotional difficulties experienced by parents grappling with their own grief whilst supporting their children (8,14,15,17).…”

“…Strain on family life due to work or financial pressures, combined with parental grief, may also mean that is harder for parents to provide the emotional support that young people need, whilst perceived distress or vulnerability in the parents may also stop children from talking about their feelings (8,12,13). Pre-pandemic and pandemic research has also demonstrated maladaptive tendencies amongst adults to try to protect children by not talking about the death pre-and postbereavement (8,(14)(15)(16)(17), uncertainty about how best to prepare children for the death (15,18), and difficulties maintaining parenting roles in the midst of their own grief and disruption (4). The difficulties of bereaved children and young people in managing and expressing their feelings has also been documented (4).…”

Parental terminal cancer and dependent children: a systematic review

“…29 31-33 49 Children's desire to be more involved and using their agency to develop coping strategies have also been found with children who are facing the death of a parent to a life-limiting illness, 17 highlighting a tension between children's need for agency and their parents' need to protect them from the illness. 17 James and Friedman 50 warn of the role some children adopt or is expected of them, to take care of everyone else. Surviving parents are also grieving, which can affect the parent and child roles, with children adopting the parent role, comforting and supporting the surviving parent which means their own needs can be forgotten or disregarded 3 51 ; this is seen to continue throughout the parent's disease and even after death.…”

“…This was seen when children took on extra household roles to help their parents; they could see the changes and disruption in the family caused by the disease, and they had a desire to help and be more involved with the family 29 31–33 49. Children’s desire to be more involved and using their agency to develop coping strategies have also been found with children who are facing the death of a parent to a life-limiting illness,17 highlighting a tension between children’s need for agency and their parents’ need to protect them from the illness 17. James and Friedman50 warn of the role some children adopt or is expected of them, to take care of everyone else.…”

“…A few studies have focused solely on the impact of parental cancer on the children of parents with non-terminal cancer or other life-limiting illnesses 5 14–17. No systematic review has assimilated research on the voice of children of all ages when a parent has terminal cancer.…”