Children’s hospices

: Exploring the wellbeing and experiences of staff and parents

Abstract

Systematic Review

Background: Caring for a child with complex medical needs or a life limiting condition can be incredibly challenging for parents. Children’s hospices provide respite support for such families. To enable continued improvements in service provision and increased engagement, we aimed to understand parents’ experience of hospice- based respite care.

Methods: Qualitative and mixed methods studies were included. Four databases were searched systematically. Quality assessment of included studies was conducted using a standardised measure. Extracted data from studies was analysed using thematic synthesis.

Results: 12 studies were included, comprising 438 parents. 7 analytical themes were apparent: “A cognitive journey to accepting respite in a hospice setting”, “Suggesting Areas for Improvement”, “Expectations vs reality”, “Initial control allows peace of mind”, “A much needed sense of connection”, “Reclaiming quality of life” and “Supporting the family system”. 16 descriptive themes were also derived.

Conclusions: Gaining an in depth account of parental experiences of respite within a children’s hospice setting has key clinical implications. There is a need to increase awareness and dispel myths about children’s hospices, among both parents and professionals. The significant benefits of hospice respite for families highlight the necessity of such services. Further research should focus on conducting high quality studies exploring the needs and experiences of parents with a child who attends a children’s hospice.

Large Scale Research Project

Background: Working in a children’s hospice is highly emotive and stressful. Despite this, there has been a lack of research aimed at improving staff wellbeing. The aim of the study was to explore acceptability and feasibility of an online stress management training for children’s hospice staff during the COVID-19 pandemic.

Methods: A 10 week online, ACT-informed stress management training was delivered to a small group of children’s hospice staff (n=9). Baseline and follow up outcome measures were administered. Interviews were conducted with participants (n=8) to explore acceptability, as well as barriers and facilitators to adherence. Quantitative data was analysed using descriptive statistics and qualitative data using the Framework Method of Analysis.

Results: Feasibility data indicated that there was low engagement with the training and poor completion of follow up outcome measures. However, participants provided an in-depth account of their experience, which allowed acceptability, as well as barriers and facilitators to adherence to be identified. Eight categories were derived from qualitative data: ‘resistance to engage’, ‘absence of psychological safety’, ‘suggested improvements’, ‘work priorities vs self-care’, ‘organisational factors’, ‘motivators’, ‘preference for wellbeing initiatives’ and ‘content that helps’.

Conclusions: This study has important implications for the development of future staff wellbeing initiatives for children’s hospice staff, as well as healthcare staff more broadly. Findings suggest the importance of co-production in developing staff wellbeing initiatives. Future research is required to further explore the needs and preferences for wellbeing initiatives of children’s staff.

Date of Award	Dec 2022
Original language	English
Awarding Institution	Queen's University Belfast
Supervisor	Christopher Graham (Supervisor) & Pauline Adair (Supervisor)