Living through the death of a child: A qualitative study of bereaved parents’ experiences

Price, Jayne; Jordan, Joanne; Prior, Lindsay; Parkes, Jacqueline

doi:10.1016/j.ijnurstu.2011.05.006

Cited by 70 publications

(108 citation statements)

References 42 publications

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“…The parents also needed to receive adequate information, guidance and support from health professionals to make decisions when the child was in the final stages of life. This was also found by Meyer, Ritholz, Burns, and Truog (2006), Price, Jordan, Prior, andParkes (2011), andAschenbrenner et al (2012).…”

Section: Discussionsupporting

confidence: 77%

When a Child Dies: Parents' Experiences of Palliative Care—An Integrative Literature Review

Melin‐Johansson

Axelsson

Grundberg

et al. 2014

Journal of Pediatric Nursing

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Section: Discussionsupporting

confidence: 77%

When a Child Dies: Parents' Experiences of Palliative Care—An Integrative Literature Review

Melin‐Johansson

Axelsson

Grundberg

et al. 2014

Journal of Pediatric Nursing

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“…In responding to their child's illness and death, parents exhibited an unremitting need to actively ‘do’ for their child and wider family, for example by providing ongoing physical care for their child while attempting to preserve some normality within family life. Thematic findings from the PATCH study have been provided elsewhere 20. Here we focus on six inter-related differences discernible in parents' accounts (see figure 3) that exposed an intractable inequality in experiences, rooted in the nature of their child's condition and associated service provision.…”

Section: Resultsmentioning

confidence: 99%

Comparing the needs of families of children dying from malignant and non-malignant disease: an in-depth qualitative study

Price

Jordan

Prior

et al. 2012

BMJ Support Palliat Care

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Objective: To examine the experiences of bereaved parents concerning the care provided to children who died from cancer compared to those who died from a nonmalignant condition.Design: An in-depth qualitative study with bereaved parents of children who died as a result of a life limiting diagnosis, recruited through two regional centres.Results: Although parents' accounts displayed commonalities, key differences were discernible. Typically, parents of children with cancer considered care at the end of life as well resourced and responsive to their and their child's needs. In contrast, parents of children with non-malignant conditions reported under-resourced and inadequately responsive services. Although both groups of parents called extensively on military metaphors such as 'battle', 'fight' and 'struggle', the focus of their respective energies was different. In the one case the adversary was disease and illness; in the other it was service providers and service provision. Conclusions:Community based services for children and young people with cancer at the end-of-life were perceived by parents as responsive to parent and child needs. Conversely, community services for children and young people with non-malignant conditions were experienced as ad hoc and under-resourced. Community services for children with non-malignant conditions may require further development if they are to meet the levels of support offered to parents of children with cancer. If improvement is to be achieved, the need to raise awareness regarding hospice services, hospice referral and eligibility criteria across the entire gamut of service providers is essential.

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“…There are different types of support described in literature, [21, 22] which can be divided into emotional, instrumental and informational support. Emotional support is any behaviour in which empathy, love, trust and care is provided to parents.…”

Section: Introductionmentioning

confidence: 99%

How do parents experience support after the death of their child?

Gijzen

L’Hoir²,

Boere-Boonekamp

et al. 2016

BMC Pediatr

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Background: A child's death is an enormous tragedy for both the parents and other family members. Support for the parents can be important in helping them to cope with the loss of their child. In the Netherlands little is known about parents' experiences of the support they receive after the death of their child. The purpose of this study is to determine what support parents in the Netherlands receive after the death of their child and whether the type of care they receive meets their needs. Method: Parents who lost a child during pregnancy, labour or after birth (up to the age of two) were eligible for participation. They were recruited from three parents' associations. Sixty-four parents participated in four online focus group discussions. Data on background characteristics were gathered through an online questionnaire. SPSS was used to analyse the questionnaires and Atlas ti. was used for the focus group discussions. Results: Of the 64 participating parents, 97% mentioned the emotional support they received after the death of their child. This kind of support was generally provided by family, primary care professionals and their social network. Instrumental and informational support, which respectively 80% and 61% of the parents reported receiving, was mainly provided by secondary care professionals. Fifty-two per cent of the parents in this study reported having received insufficient emotional support. Shortcomings in instrumental and informational support were experienced by 25% and 19% of the parents respectively. Parental recommendations were directed at ongoing support and the provision of more information. Conclusion: To optimise the way Dutch professionals respond to a child's death, support initiated by the professional should be provided repeatedly after the death of a child. Parents appreciated follow-up contacts with professionals at key moments in which they were asked whether they needed support and what kind of support they would like to receive.

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Living through the death of a child: A qualitative study of bereaved parents’ experiences

Cited by 70 publications

References 42 publications

When a Child Dies: Parents' Experiences of Palliative Care—An Integrative Literature Review

When a Child Dies: Parents' Experiences of Palliative Care—An Integrative Literature Review

Comparing the needs of families of children dying from malignant and non-malignant disease: an in-depth qualitative study

How do parents experience support after the death of their child?

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