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

Palliative Medicine, 2019 33(8) p.1017-1044

Jeffrey R Hanna, Eilís McCaughan, Cherith J Semple

This review synthesised evidence on the experiences of parents and children when a parent is at the end of life to discern their challenges, support needs and the factors that facilitated good practice. 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. 

Young people and their understanding of loss and bereavement

Bereavement Care, 2019 38(1)  p.6-12
Scott, Ros; Wallace, Rebecca; Audsley, Annie; Chary, Srini

The aim of this study was to explore how pupils aged between 12 and 18 understand major loss, death and dying, whom they talk to and the support they access at these times, and their awareness of the range of support available to them.  It was found that pupils who had experience of major loss or bereavement showed significant awareness of their feelings. It appears that young people primarily seek support from family, friends and the school.

It's a hard conversation to have'. Healthcare professionals' views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study

BMJ Supportive & Palliative Care, 2019 9(1) p. e9
Hiscock, Andy; Barclay, Stephen

There is very limited literature concerning the discussions about end-of-life plans healthcare professionals have with young people affected by life-limiting neuromuscular diseases. While recognising the inevitable progression of the conditions, there was no consensus among interviewees concerning best approaches to discuss end-of-life care plans. Several environmental and personal barriers were identified that lead to avoidance of the emotionally challenging and difficult conversations.

The engagement of young people in their own advance care planning process: A systematic narrative synthesis

Palliative Medicine, 2018 32(7) p.1147-1166
Hughes, Ben; O'Brien, Mary R.; Flynn, Anita; Knighting, Katherine

With an increasing number of young people living with life-limiting conditions there is a need to understand how far young people are engaged in their own advance care planning in order to shape future practice and facilitate young people's wishes. The aim of this study was to identify and assess the current evidence to determine the barriers and facilitators to the engagement of young people in their own advance care planning process.

A checklist to a good transition

Together For Short Lives, February 2018
Julia Hodgson

Although designed for seriously ill young people to assess how well agencies involved in their education and care are working together to enable a smooth transition, "A checklist to a good transition" can also be a useful tool to guide person-centred discussions between professionals, young people and their family members. Professionals may find that the questions asked in the checklist are good prompts for conversations around transition and advance care planning.

Download the guide from the Together for Short Lives website

Short break and emergency respite care: what options for young people with life-limiting conditions?

International Journal of Palliative Nursing, Feb 2016, vol. 22, no. 2, p. 57-65

Mitchell, Tracy K, Knighting, Katherine, O'Brien, Mary R, Jack, Barbara A

Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.  The purpose of this two-phase evaluation study was to explore alternative short break and emergency respite care options to children's hospice care. There were few, or no, alternatives when children's hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for children's hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the children's hospice eligibility criteria. 

Available in print in Arthur Rank Hospice Library, Brookfields Hospital