The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review

Weaver, Meaghann S.; Mooney-Doyle, Kim; Kelly, Katherine Patterson; Montgomery, Kathleen; Newman, Amy Rose; Fortney, Christine A.; Bell, Cynthia J.; Spruit, Jessica L.; Uveges, Melissa Kurtz; Wiener, Lori; Schmidt, Cynthia; Madrigal, Vannessa N.; Hinds, Pamela S.

doi:10.1089/jpm.2018.0483

Cited by 39 publications

(34 citation statements)

References 41 publications

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“…In the setting of in-person meeting restrictions with the coronavirus pandemic, further studies are warranted to explore the impact of online support for bereaved parents. Response rates in parent bereavement studies are notably low, [24][25][26] which limits access to a comprehensive understanding of bereaved parent preferences for grief care. Recognizing the high number of families who were mailed a personalized invitation but did not engage in this participation warrants exploration about the reasons for not participating and potential barriers to engagement.…”

Section: Discussionmentioning

confidence: 99%

Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents

Weaver

Jurgens

Neumann

et al. 2021

Journal of Palliative Medicine

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Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences with an online support group to include perceptions of technology acceptance and group communication dynamics. Design: Descriptive study reporting on an eight-week online bereavement support group offered during summer 2020. Subjects and Setting: Inclusive of six bereaved parent participants in the Midwestern United States. Measurements: Post-intervention survey consisting of 49-items with the Technology Acceptance Model and Other Communicated Perspective-Taking Ability instruments embedded. Results: Five bereaved mothers and one father (mean age 32 years) residing an average 126 miles from hospital participated in an online support group in a timeframe seven months to one year from the death of their child. Intensity of grief emotion (5/6 parents) and physical distance (4/6 parents) were notable barriers to in-person visits to the hospital, where bereavement support was to be offered. Parents uniformly reported feeling benefit from the program and satisfaction with the program. Respondents self-reported gaining improved communication (4/6 parents), coping (3/6 parents), peer support (3/6 parents), education (3/6 parents), and emotional expression (3/6 parents). Mean scores on the technology acceptance and communication experiences scales were 4.7/5. The virtual format was an acceptable modality with perceived supportive interpersonal communication dynamics. Conclusion: Pediatric palliative care teams may consider the offering of online bereavement support groups. Further research is warranted on the impact and outcomes of online bereavement support groups for bereaved parents.

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Section: Discussionmentioning

confidence: 99%

Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents

Weaver

Jurgens

Neumann

et al. 2021

Journal of Palliative Medicine

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“…Children receiving palliative care, their family caregivers, and their providers have together documented the overwhelmingly positive impact of not only their participation but their actual partnership in PPC research. 2,[4][5][6] Family caregiver partnerships have brought underrecognized and underexplored topics (hospice transitions, support for bereaved siblings, and symptom management) to the forefront of research and intervention priorities; have reviewed and refined data collection materials to foster understandability; have expanded research participation to underrepresented communities through established and trusted peer relationships; and have creatively disseminated research results to foster family access.…”

Section: Discussionmentioning

confidence: 99%

“…Although families are diverse in cultural, ethnic, educational, gender, and spiritual backgrounds, family caregivers emphasize the benefits and nonharms of participation in PPC research. 2,[4][5][6] Research is best informed by learning from us about the ways that our backgrounds may influence our readiness for research or even our trust in the research process. Just as the research team has insight into methodology and study design, we do have a complementary perspective on when and how our experiences should be shared.…”

Section: Parent Perspective Dr Moonmentioning

confidence: 99%

Family Caregiver Partnerships in Palliative Care Research Design and Implementation

et al. 2021

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“…Weaver et al. (2019) suggests that there is a tension within CPC research between collecting vital data and protecting vulnerable populations.…”

Section: Discussionmentioning

confidence: 99%

A systematic review exploring palliative care for families who are forced migrants

Clancy

Taylor

Bradbury‐Jones

et al. 2020

Journal of Advanced Nursing

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The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review

Cited by 39 publications

References 41 publications

Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents

Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents

Family Caregiver Partnerships in Palliative Care Research Design and Implementation

A systematic review exploring palliative care for families who are forced migrants

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