Adequacy of palliative care in a single tertiary neonatal unit

Gilmour, Deborah; Davies, Mark W; Herbert, Anthony

doi:10.1111/jpc.13353

Cited by 17 publications

(40 citation statements)

References 20 publications

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“…Only one service was formed exclusively by nursing, 17 while the other services were formed by an interprofessional team consisting of either physicians, nurses, social workers, psychologists, chaplaincy, and/or bereavement services. [14][15][16]18,20 In the remaining studies, 19,21 PPC was provided by the NICU staff via a neonatal palliative care intervention and not by a specialized consulting team. We decided to include these studies given that NICU interprofessional teams had formal and specific palliative care training prior to the implementation of the neonatal palliative care interventions.…”

Section: Study Characteristicsmentioning

confidence: 99%

“…The provided SPPC services varied among the studies: two provided antenatal palliative care and delivery planning 16,21 ; three provided bereavement support 14,18,19 ; four provided a Newcastle-Ottawa Scale for assessing the quality of nonrandomized studies based on the selection of the study groups, their comparability, and the ascertainment of the outcome. The greater the number (maximum 9), the higher the quality.…”

Section: Study Characteristicsmentioning

confidence: 99%

“…18,19 Two studies excluded infants who had a limited opportunity to have a palliative care plan or intervention either because they died during labor, were stillborn, or died very rapidly (within 24 hours of birth). 14,21 One study excluded patients who had a palliative care consult but were discharged to die at home. 18 One study included only patients with an anticipated stay of more than 2 weeks in the NICU.…”

Section: Study Characteristicsmentioning

confidence: 99%

“…16,18 Quality Assessment Five studies were rated as good quality on the Agency for Healthcare Research and Quality standards scale. 16,[18][19][20][21] Two studies were evaluated to be poor due to a score of 0 in the comparability domain 14,17 ; with one of these also receiving a score of 1 in the outcome domain 17 (►Table 2). The randomized controlled trial was deemed to have a high risk of bias 15 (►Table 3).…”

Section: Study Characteristicsmentioning

confidence: 99%

“…However, a qualitative synthesis of results for several indicators was possible. The outcomes assessed were categorized into eight domains: intensity of treatment 14,16,[18][19][20][21] ; psychological, social and spiritual support 14,18,19 ; communication 14,15,19,21 ; location of care 14,18 ; symptom management 14,19,21 ; bereavement care 14 ; predicted versus actual neonatal outcomes 16 ; and parental coping, stress, and satisfaction. 15,17…”

Section: Outcomes Assessedmentioning

confidence: 99%

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Specialized Pediatric Palliative Care in Neonates with Life-Limiting Illness: A Systematic Review

et al. 2020

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Objective The aim of this study is to assess the impact of specialized pediatric palliative care (PPC) on neonates with life-limiting conditions compared to standard care. Study design MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Randomized clinical trials, experimental or observational studies, and secondary administrative database analyses published in English, Spanish, French, and German were included. Two independent reviewers extracted data, and used the Newcastle-Ottawa Scale and the Cochrane Risk of Bias Tool for quality analysis. Discrepancies were resolved as a team. Results From the 37,788 records obtained, only eight articles met the inclusion criteria. A meta-analysis was not possible due to the heterogeneity in how the outcomes were defined; however, a qualitative synthesis of the results was possible; organizing outcomes into eight different categories: psychological, social and spiritual support; communication; location of care; symptom management; bereavement care; predicted versus actual neonatal outcomes; and parental coping, stress, and satisfaction. Conclusion Specialized versus may have an impact on neonates with life-limiting conditions and their families. More studies that evaluate the impact of specialized versus in neonates with sound statistical analysis is warranted.

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Section: Study Characteristicsmentioning

confidence: 99%

Section: Study Characteristicsmentioning

confidence: 99%

Section: Study Characteristicsmentioning

confidence: 99%

Section: Study Characteristicsmentioning

confidence: 99%

Section: Outcomes Assessedmentioning

confidence: 99%

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Specialized Pediatric Palliative Care in Neonates with Life-Limiting Illness: A Systematic Review

et al. 2020

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Parents’ Views on Autopsy, Organ Donation, and Research Donation After Neonatal Death

Crouch,

Damas,

Bartrug

et al. 2023

JAMA Netw Open

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ImportanceParents who experience neonatal loss have the option to participate in autopsy, organ donation, and research donation. However, clinicians are uncomfortable discussing autopsy and may not be aware of research and organ donation opportunities.ObjectiveTo capture the perspectives of parents who had experienced neonatal loss about autopsy, organ donation, and research donation.Design, Setting, and ParticipantsThis qualitative study used virtual focus groups with parents who attended a local bereavement support group in the US. Participants were recruited from Helping After Neonatal Death, a support group with a local chapter. Participants self-selected from an email request if they met the following criteria: aged 18 years or older, English speaking, at least 6 months elapsed since neonatal death, and access to a video conference device with internet. Focus groups took place between April and September 2021. The recorded sessions were analyzed using a grounded theory–informed approach by the research team that included parents with experience of neonatal loss. Data were analyzed from December 2021 through December 2022.ResultsA total of 14 mothers engaged in the focus group; 9 (75%) were aged 30 to 39 years, and 8 (66%) were White. The mothers were overall well educated. The first main theme grew from the lived experience of neonatal loss, specifically the importance of offering all parents the option to donate, rather than prejudging who would or would not be interested. Parents of neonates who die have few opportunities to parent that child and make loving decisions for them. Participants emphasized that the conversation about autopsy, organ donation, and research donation, albeit difficult, can offer a meaningful parenting experience. A second main theme that emerged related to how organ or tissue donation could provide additional meaning to a child’s life. These choices contributed to building a legacy to honor their child’s memory, which also helped with grief and coping with their loss. A third theme included recommendations to clinicians and health systems for improving communication, including written information for parents and communication training for health care professionals.Conclusions and RelevanceIn this qualitative study, parents who experienced neonatal loss endorsed the importance of offering parents the choice of autopsy, organ donation, or research donation with skillful and empathetic communication. They provided practical recommendations to improve communication and empower families.

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Australia

Kain¹

2020

Neonatal Palliative Care for Nurses

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Adequacy of palliative care in a single tertiary neonatal unit

Abstract: At the time of this study, the neonatal unit was not meeting all of the end-of-life care needs of infants and their families. Care was generally more comprehensive when the palliative care service was consulted.

Cited by 17 publications

References 20 publications

Specialized Pediatric Palliative Care in Neonates with Life-Limiting Illness: A Systematic Review

Specialized Pediatric Palliative Care in Neonates with Life-Limiting Illness: A Systematic Review

Parents’ Views on Autopsy, Organ Donation, and Research Donation After Neonatal Death

Australia

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