Challenges and support needs of parents and children when a parent is at end of life: A systematic review

Abstract

Background: Preparing children for the death of a parent is challenging. Parents are often uncertain if and how to communicate and support their children. Many parents feel it is protecting their children by not telling them about the prognosis. Children less prepared for parental death from a terminal illness are more susceptive to later adversities. To facilitate coping and moderate for such adversities, there is a need to gain insight and understand the experience and challenges confronted by families. Aim: This review synthesised evidence on the experiences of parents and children when a parent is at end of life to discern their challenges, support needs and factors that facilitated good practice. Design: Mixed-methods systematic review. Data sources: Four electronic databases (CINAHL, PubMed, PsycINFO and Ovid MEDLINE) using MeSH terms and word searches in October 2018. Studies were not limited by year of publication, language or country. Grey literature searches were also completed on Google Scholar and OpenGrey. Results: In all, 7829 records were identified; 27 qualitative and 0 quantitative studies met the inclusion criteria. Eight descriptive themes were identified, further categorised into two broad themes: (1) barriers and facilitators in sharing the news that a parent is dying and (2) strategies to manage the changing situation. Conclusion: Lack of understanding in relation to the parent’s prognosis, denial and feeling ill-equipped were suggested as barriers for parents to share the news with their children. Engagement with social networks, including extended family relatives and peers, and maintaining routines such as attending school were suggested supportive by parents and children. Findings are limited primarily to White, middle-class two-parent families. A number of areas for future research are identified.

Providing care to parents dying from cancer with dependent children: Health and social care professionals' experience

“…This article refers to the term ‘dying’ when the death of a patient is anticipated within the next three months 3 . Often, parents feel ill‐equipped to prepare their children for this end of life (EOL) experience 4–6 …”

“…Children prepared for the death of a parent adapt better long‐term with improved psychosocial functioning, 9 compared to peers less prepared for the death of a parent 10,11 . Often, parents feel they are protecting their children by not including them throughout the EOL experience 6 . There is a need to support parents to foster an environment of open and honest communication with the children, when a parent is dying from cancer 6 …”

“…Often, parents feel they are protecting their children by not including them throughout the EOL experience 6 . There is a need to support parents to foster an environment of open and honest communication with the children, when a parent is dying from cancer 6 …”

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

“…24,25 Even experienced palliative care professionals can find it difficult to provide holistic family-centred care when children are involved and are often unsure what advice to give to parents. 26,27 The result is that the needs of children may not be appropriately addressed as their parent is dying.…”

‘My life's properly beginning’: young people with a terminally ill parent talk about the future

“…Research indicates that, far from being passive victims of their family circumstances, young people purposively engage with a number of strategies to negotiate everyday life with a parent who is dying; for example, seeking to maintain a sense of normality by adhering to usual routines, and keeping busy with activities outside the home (Hanna et al . , Sheehan et al . ).…”