<i>You are at rock bottom:</i> A qualitative systematic review of the needs of bereaved parents as they journey through the death of their child to cancer

Kenny, Méabh; Darcy-Bewick, Sinead; Martin, Aoife; Eustace‐Cook, Jessica; Hilliard, Carol; Clinton, Frieda; Storey, Lorna; Coyne, Imelda; Murray, Kim; Duffy, Katie; Fortune, Gillian; Smith, Owen; Higgins, Agnès; Hynes, Geralyn

doi:10.1080/07347332.2020.1762822

Cited by 17 publications

(19 citation statements)

References 30 publications

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“…To our knowledge, this article is the also first to represent data from two intervention efforts delivered to both English and Spanish speaking families, with no discernible differences in the identified needs or perceived benefits between groups. A sense of abandonment from health care providers has also been identified as a common theme among bereaved parents (Kenny et al, 2020). Our results suggest that the presence of hospital staff at bereavement interventions can diminish the feeling of abandonment from the support received through the hospital system during their child’s illness.…”

Section: Discussionmentioning

confidence: 99%

The impact of family bereavement interventions: Qualitative feedback identifies needs.

Henning¹,

Germann²,

Holder³

et al. 2021

Clinical Practice in Pediatric Psychology

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Objective: To present a synthesis of program improvement evaluations of two approaches to bereavement support for families: (a) weekend family camps providing developmentally targeted grief education and social support for children and parents, and (b) a wait-list control randomized trial of a parent bereavement group intervention. Method: Families eligible for camp experienced a child's death (from any cause) and have surviving children at home. No-cost twice-yearly weekend camps include support sessions and family activities like fishing. After each retreat, parents and children complete an anonymous evaluation. We analyzed forms from 2009-2014 using the constant comparative method to devise a code structure and identify themes to understand camp impact. The second intervention, the bereavement group, included English and Spanish speaking parents of children who died from cancer. They were initially randomized to intervention and wait-list control groups. Intervention included six-weekly sessions of a bereavement program. Participants were invited to a postintervention focus group to better understand reasons for participation, the value of the group, and their support needs. Results: Qualitative findings from both groups strongly indicate that bereaved parents have specific ongoing needs that can be addressed through family-or parent-focused interventions. Families identified benefits including being able to openly express feelings with peers who truly understand, gaining an understanding of individual and developmental differences in the grief Julie N.

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Section: Discussionmentioning

confidence: 99%

The impact of family bereavement interventions: Qualitative feedback identifies needs.

Henning¹,

Germann²,

Holder³

et al. 2021

Clinical Practice in Pediatric Psychology

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“…The references of 15 reviews identified in the databases were also manually searched but no further studies were added. [22][23][24][25][26][27][28][29][30][31][32][33][34][35] One further report was identified as a linked study giving a total of 95 included reports from 82 studies.…”

Section: Resultsmentioning

confidence: 99%

Understanding parent experiences of end-of-life care for children: A systematic review and qualitative evidence synthesis

et al. 2022

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Background: An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support. There is a lack of synthesised research about how parents experience the care delivered to their child at the end of life. Aim: To systematically identify and synthesise qualitative research on parents’ experiences of end-of-life care of their child. Design: A qualitative evidence synthesis was conducted. The review protocol was registered in PROSPERO (CRD42021242946). Data sources: MEDLINE, EMBASE, CINAHL, PsycINFO and Web of Science databases were searched for qualitative studies published post-2000 to April 2020. Studies were appraised for methodological quality and data richness. Confidence in findings was assessed by GRADE-CERQual. Results: About 95 studies met the eligibility criteria. A purposive sample of 25 studies was taken, of good-quality papers with rich data describing the experience of over 470 parents. There were two overarching themes: parents of children receiving end-of-life care experienced a profound need to fulfil the parental role; and care of the parent. Subthemes included establishing their role, maintaining identity, ultimate responsibility, reconstructing the parental role, and continuing parenting after death. Conclusions: Services delivering end-of-life care for children need to recognise the importance for parents of being able to fulfil their parental role and consider how they enable this. What the parental role consists of, and how it’s expressed, differs for individuals. Guidance should acknowledge the need to enable parents to parent at their child’s end of life.

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“…Our hospice (KdSC and MM) often uses Child Life specialists as a way to support siblings throughout an end-of-life admission, though we recognise we may need to provide other support as well. Not only has grief and bereavement support been acknowledged as a gap within PPC, there have been calls for better integration of this support during the provision of PPC 37–39…”

Section: Discussionmentioning

confidence: 99%

Family experiences with palliative care in freestanding paediatric hospices: a scoping review

Dorman

Bouchal

Curiel

et al. 2022

BMJ Support Palliat Care

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BackgroundPaediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within a freestanding paediatric hospice or designated end-of-life care bed. Few studies have assessed families’ experiences of this care within freestanding paediatric hospices.ObjectivesTo find and describe literature relating to family experiences in paediatric hospice palliative care throughout the end-of-life care journey including grief and bereavement.CriteriaInclusion criteria: Children antepartum to 18 years or older if on paediatric palliative care service. Research conducted in freestanding paediatric hospices that focused on families’ experiences and perceptions of end-of-life and grief and bereavement care. Full-text articles available in English.Exclusion criteria: Adult palliative and end-of-life care, respite care, palliative care provided in acute or community settings, professional perspectives, unexpected or sudden child death, pregnancy after loss.Sources of evidenceAcademic Search Complete, CINAHL, Cochrane Database of Systematic Reviews, Embase, PsycINFO, PubMed and Web of Science databases were searched from database inception until the present. Grey literature was also searched for relevant results.Charting methodsThe scoping review was guided by recommendations from Arksey and O’Malley and Levac et al.ResultsA total of 4250 papers were retrieved, of which 10 met the scoping review criteria. The majority of studies were conducted in the UK. Three major themes emerged: more supportive care for families including grief and bereavement support, the hospice experience itself and future research areas.ConclusionsThere is little literature that focuses specifically on the needs of families within freestanding paediatric hospices. Further examination of the themes identified above provides an opportunity for future research.

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You are at rock bottom: A qualitative systematic review of the needs of bereaved parents as they journey through the death of their child to cancer

Cited by 17 publications

References 30 publications

The impact of family bereavement interventions: Qualitative feedback identifies needs.

The impact of family bereavement interventions: Qualitative feedback identifies needs.

Understanding parent experiences of end-of-life care for children: A systematic review and qualitative evidence synthesis

Family experiences with palliative care in freestanding paediatric hospices: a scoping review

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