The experience of providing end of life care at a children’s hospice: a qualitative study

Abstract

BackgroundMore attention is being paid to the wellbeing of staff working in stressful situations. However, little is known about staff experience of providing end-of-life care to children within a hospice setting. This study aims to explore the experiences of care team staff who provide end-of-life care within a children’s hospice.MethodsQualitative research incorporating interviews and a focus group. Data were analysed using thematic analysis. Purposeful sampling led to a total of 15 care team staff recruited from a children’s hospice offering palliative and specialist care to life-limited children and young people.ResultsThe hospice setting provides a model of excellence in supporting staff and mitigating challenging aspects of their role, which includes peer/organisational support, and regular ongoing training in key aspects of children’s palliative care. Key recommendations for improving their experience included advanced communication training and knowledge sharing with other children’s palliative care specialists within the acute setting.ConclusionsService and policy initiatives should encourage open, informal peer/organisational support among the wider children’s palliative care sector. Further research should focus on paediatric palliative care education, particularly in relation to symptom management and communication at end-of-life, harnessing the expertise and breadth of knowledge that could be shared between children’s hospices and hospital settings.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-017-0189-9) contains supplementary material, which is available to authorized users.

Clinical Supervision for Support Workers in Paediatric Palliative Care: A Literature Review

“…The practical challenges of implementing supervision for support workers were considered by multiple authors – in particular case/audit studies that tracked the process of evaluating staff wellbeing and reflective spaces in departments that had not previously considered this (McConnell & Porter, 2017). Evidence from these studies suggests that currently, the practical considerations regarding implementation account for a large proportion of what is known about clinical supervision for support workers (Taylor & Aldridge, 2017).…”

“…Several articles found that the key to successful supervision was in facilitating connections between staff members through peer/group supervision. For example, McConnell and Porter (2017) found that healthcare professionals reported they favoured peer supervision because a shared understanding existed within groups of individuals doing the same role. Similarly, staff respondents in Castor et al (2017) interviews with community-based healthcare professionals reported that informal debriefing with one other professional was not considered sufficient support.…”

“…As non-registered care staff, support workers are not typically exposed to the process of supervision as a pre-requisite of clinical work and therefore are often unaware of its purpose and benefits. Respondents in McConnell and Porter's (2017) interviews reported that supervision was supplied for non-registered staff but that a high degree of formality in supervision was poorly received by less senior staff such as support workers. Interestingly, this study outlines that informal peer support meetings that emulated supervision groups were received very well.…”

Attitudes and Associated Factors towards Care for Dying Patients among Non-Palliative Care Nurses, Yogyakarta, Indonesia

“…Staff who provide end-of-life care are more likely to experience high levels of emotional exhaustion (McConnel, 2017;Namasivayam et al, 2013;Yang et al, 2017). Many report feelings of emotional distress, anxiety, and a lack of preparation to provide care to patients at the end of life and their families.…”

Metaphors that shape parents’ perceptions of effective communication with healthcare practitioners following child death: a qualitative UK study

“…When parents experience the death of a child, no matter the age, they experience a range of complex, often intolerably painful emotions [1]. The experience and effects of the death of a child on parents has received considerable attention, including the psychosocial impacts experienced as a consequence of devastating and enduring grief [2]; the experience of parents around end of life of a child [3][4][5]; what they want and expect from healthcare practitioners (HCPs) [2,6]; and impacts of bereavement services and interventions [1,7]. Less work has focused on the communication remembered by parents as part of their experiences of care or services received, or how that communication subsequently scaffolds their experience of bereavement.…”