Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity

Lord, Sarah; Moore, Clara; Beatty, Madison; Cohen, Eyal; Rapoport, Adam; Hellmann, Jonathan; Netten, Kathy; Amin, Reshma; Orkin, Julia

doi:10.1001/jamanetworkopen.2020.10337

Cited by 33 publications

(49 citation statements)

References 28 publications

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“…However, poor bereavement support may leave parents feeling ‘abandoned’ [ 82 , 85 , 114 , 120 , 127 , 176 , 183 ], resulting in the feeling of having suffered a ‘double loss’ [ 109 ] or ‘multiple losses’ [ 111 , 184 ].…”

Section: Resultsmentioning

confidence: 99%

“…Reporting feeling of having suffered a ‘double loss’[ 109 ] or ‘multiple losses’ [ 111 ] following poor bereavement support [ 184 ]…”

Section: Discussionmentioning

confidence: 99%

“…The setting and timing of a child's death greatly impacts the parent's bereavement. A death following a protracted illness predisposed them to complicated grief [110] and desensitisation [111]. On the other hand, being aware of the child's prognosis helped prepare some parents [110,112].…”

Section: Attitude To Life and Deathmentioning

confidence: 99%

“…On the other hand, being aware of the child's prognosis helped prepare some parents [110,112]. Direct, timely, and personalised communications [113], effective end of life care [111,[114][115][116][117][118][119][120][121][122][123][124], respect for advance care planning (ACP) [111] and parental involvement in care determinations also assuaged parental grief [84,125,126].…”

Section: Attitude To Life and Deathmentioning

confidence: 99%

“…Parents who could share their feelings [127,128], and received guidance [116,117,119,127,129,130] and frequent updates on their child's prognosis and health status [131,132] in an honest [120], under-Fig. 3 PRISMA flow chart standable [133], consistent [114,117,128], compassionate [90,111,115,118,119,134] and culturally sensitive manner [87,117,128,135,136] coped better and suffered less grief [88,90,120,127,129,131,133,[136][137][138][139][140][141][142]. Parents found that being present at their child's death [140,143] ameliorated the grieving process [134,140] as "seeing and holding or being allowed to touch and hold helps the bereaved person adapt to the loss and say goodbye"…”

Section: Coping Ipositive Copingmentioning

confidence: 99%

See 4 more Smart Citations

Parental bereavement – impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review

et al. 2021

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Background Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support is key to effective care of bereaved parents. However, in the absence of a comprehensive understanding of parental bereavement, effective support of bereaved parents remains suboptimal. To address this gap, we scrutinise prevailing data on the effects of a child’s death, aged 0–12 years, through the lens of the Ring Theory of Personhood (RToP). Methods To study prevailing accounts of bereaved parents following the death of a child, we adopt Krishna’s Systematic Evidence Based Approach (SEBA) to structure our Systematic Scoping Review (SSR in SEBA). Results Three thousand seventy-four abstracts were reviewed, 160 full text articles were evaluated, and 111 articles were included and analysed using thematic and content analysis. Four themes/categories were identified relating to the four rings of the RToP. Findings reveal that static concepts of protective and risk factors for grief are misplaced and that the support of healthcare professionals is key to assisting bereaved parents. Conclusion In the absence of consistent support of bereaved parents, this study highlights the need for effective training of healthcare professionals, beginning with an appreciation that every aspect of an individual parent’s personhood is impacted by the loss of their child. Acknowledging grief as a complex, evolving and personalised process subjected to parental characteristics, settings, context and available support, this SSR in SEBA calls attention to effective nurturing of the relationship between parents and healthcare professionals, and suggests use of the RToP to assess and direct personalised, timely, specific support of parents in evolving conditions. We believe the findings of this review also call for further studies to support healthcare professionals as they journey with bereaved parents.

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