Parents' Assessment of Quality of Care and Grief Following a Child's Death

Seecharan, Grace A.; Andresen, Elena M.; Norris, Kaye; Toce, Suzanne S.

doi:10.1001/archpedi.158.6.515

Cited by 57 publications

(50 citation statements)

References 34 publications

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“…In addition, other studies have found that multiple factors predict parental grief, including the length of the child's illness, parent's history of previous losses and whether the child's death was anticipated. 21,22 In the current study, grief scores did not differ significantly between parents who had hospice or palliative care involvement and those parents who did not have these services. Due to the small sample size of the current study, we were not able to determine if this or other factors contributed to the grief level in this group of parents.…”

Section: Discussionmentioning

confidence: 44%

Infant end-of-life care: the parents' perspective

Pierucci²,

et al. 2007

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Objective: The purpose of this study was to identify factors important to parents in their infant's end-of-life care.Study Design: Participants were parents (n ¼ 19 families) whose infant (less than 1 year old) had died. Parents completed the Revised Grief Experience Inventory (RGEI) and a semi-structured interview regarding their infant's end-of-life care. Interviews were rated using the Post-Death Adaptation Scale (PDAS).Result: Parents scored significantly lower than the normative sample on the RGEI, and PDAS scores suggested that these parents were adapting positively. Parent interviews identified the aspects of care that were important to parents: honesty, empowered decision-making, parental care, environment, faith/trust in nursing care, physicians bearing witness and support from other hospital care providers. Conclusion:Results of this study suggest that parents can effectively cope following the death of an infant and the medical staff can do much to improve the end-of-life care for infants and their families.

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Section: Discussionmentioning

confidence: 44%

Infant end-of-life care: the parents' perspective

Pierucci²,

et al. 2007

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“…[20][21][22] A few studies have examined satisfaction among families undergoing prenatal diagnosis, but none have linked satisfaction or dissatisfaction with specific aspects of care. This study adds to our knowledge by identifying aspects of care that are key in determining satisfaction and could be targeted to optimize family satisfaction with care: expressions of empathy from provider, continuity of care, communication, valuing the fetus and developing care plans.…”

Section: Discussionmentioning

confidence: 99%

The health-care experiences of families given the prenatal diagnosis of trisomy 18

Walker

Miller²,

Dalton

2007

J Perinatol

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Objective: The objective of this study was to examine parent-reported experiences in the health care system after receiving the prenatal diagnosis of trisomy 18 and to identify factors that contribute to satisfaction with care.Study Design: Nineteen families who received the diagnosis between 2002 and 2005 were given semistructured telephone interviews. Of the 19 families, 11 continued the pregnancy while the remaining 8 chose induced abortion. Classical content analysis was utilized to identify themes among subject responses. Result:We identified several specific aspects of care as key in either being highly satisfied or dissatisfied: expressions of empathy from provider, continuity of care, communication, valuing the fetus and participation in medical decision-making.Conclusions: Aspects of care that were identified as reasons for dissatisfaction are potentially modifiable by training, education or teambased approaches. Further studies are necessary to determine how we can improve the quality of services during prenatal diagnosis.

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“…[18][19][20][21][22][23][24][25][26] This unique pilot study reports and compares the experiences of neonatologists, advanced practitioners, nurses, and parents at a single-center level III and level IV NICU without a formal palliative care team. While the parent and healthcare team surveys represent two slightly different time periods, the low turnover rates for neonatologists, advanced practitioners, and nurses and the absence of significant changes in practice may indicate that care was consistent.…”

Section: Discussionmentioning

confidence: 99%

“…However, data specific to NICU setting are limited. [18][19][20][21][22][23][24][25][26] Furthermore, no study to date has described multiple stakeholders' perspectives of end-of-life experiences in this setting.…”

mentioning

confidence: 99%