scholarly journals Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development

Children ◽  
2021 ◽  
Vol 8 (6) ◽  
pp. 472
Author(s):  
Holly Spraker-Perlman ◽  
Taylor Aglio ◽  
Erica Kaye ◽  
Deena Levine ◽  
Brittany Barnett ◽  
...  
Keyword(s):  
Meaning Making ◽  
Quality Care ◽  
Program Planning ◽  
Medical Specialty ◽  
Support Program ◽  
Pediatric Palliative Care ◽  
Parent Perspective ◽  
Bereaved Parents ◽  
Palliative Oncology ◽  
Bereavement Care

As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care.

scholarly journals A Systematic Literature Review of the Current State of Knowledge Related to Interventions for Bereaved Parents

2019 ◽  
Vol 36 (12) ◽  
pp. 1124-1133 ◽  
Author(s):  
Nancy Dias ◽  
Verna L. Hendricks-Ferguson ◽  
Holly Wei ◽  
Elizabeth Boring ◽  
Kerry Sewell ◽  
...  
Keyword(s):  
Literature Review ◽  
Systematic Literature Review ◽  
Emotional Health ◽  
Group Discussions ◽  
Assessment Development ◽  
Bereaved Parents ◽  
Mesh Terms ◽  
Support Resource ◽  
State Of The Science ◽  
Bereavement Care

Aims: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations. Methods: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines. Results: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model. Conclusions: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs.

Bereaved Parents' Perspectives on Pediatric Palliative Care

2012 ◽  
Vol 8 (4) ◽  
pp. 316-338 ◽  
Author(s):  
Rhonda Robert ◽  
Donna S. Zhukovsky ◽  
Riza Mauricio ◽  
Katherine Gilmore ◽  
Shirley Morrison ◽  
...  
Keyword(s):  
Palliative Care ◽  
Pediatric Palliative Care ◽  
Bereaved Parents

scholarly journals A Social-­‐Justice Informed Evaluation of a Mentorship-Based Program Pairing At-Risk Youth and Holocaust Survivors

2016 ◽  
Vol 8 (2) ◽  
pp. 49-69
Author(s):  
Melissa L Morgan-Consoli ◽  
Brian J Stevenson ◽  
Erika Noriega Pigg ◽  
Wendy Eichler Morrison ◽  
Kelley Hershman ◽  
...  
Keyword(s):  
Social Justice ◽  
Youth Development ◽  
Intervention Program ◽  
Formative Evaluation ◽  
Meaning Making ◽  
Program Planning ◽  
Lessons Learned ◽  
Holocaust Survivor ◽  
Community Based ◽  
Personal Impact

This paper describes a social justice informed, formative evaluation of a community-based intervention program in our community that paired marginalized Latinx youth and Holocaust survivor mentors. This program is a unique effort to address the issues facing this youth population through difficult dialogues and mentorship from a group who has clearly suffered oppression. Using a qualitative, community-based approach, eight program participants were interviewed to explore the aspects of the program that were helpful or challenging among youth mentees and survivor mentors. We reflect on the success of mentorship interventions in promoting bridges of understanding between populations with different combinations of power and privilege. Emergent themes from the evaluation suggest that this community-based mentorship program led to several positive outcomes, including increased openness to diversity, increased empathy, and increased potential meaning-making for mentor survivors, as well as some challenges such as clearer program expectations and program planning issues. Using a lens of Positive Youth Development and social justice, we detail the lessons learned from this mentoring program for future counselors and psychologists interested in program development and evaluation. We also provide reflections on the formative program evaluation process for future community-based researchers and the personal impact of the experience on the students in training. Finally, we reflect on impact validity and the systems level transformative change that can be promoted through community-based programs such as this one.

scholarly journals Bereavement Care for Parents in the Neonatal Intensive Care Unit: A Literature Review

2020 ◽  
Vol 26 (2) ◽  
pp. 286-295
Author(s):  
Wonjin Seo ◽  
Hyejung Lee ◽  
Sumi Oh ◽  
Hyoeun Sa ◽  
Hyoyeong Kim
Keyword(s):  
Social Support ◽  
Intensive Care Unit ◽  
Intensive Care ◽  
Literature Review ◽  
Neonatal Intensive Care Unit ◽  
Neonatal Intensive Care ◽  
Cochrane Library ◽  
Care Providers ◽  
Bereaved Parents ◽  
Bereavement Care

Purpose: The purpose of this study was to review studies investigating the effect of bereavement care provided for parents in the neonatal intensive care unit. Methods: We conducted a literature review of databases (MEDLINE, Embase, Cochrane Library, and CINAHL) for studies published in English and four databases (RISS, KISS, NANET, and KoreaMed) for Korean studies. The selection criteria included original articles that evaluated the parents’ perceptions or responses to bereavement care provided in the neonatal intensive care unit. Of 889 articles from the initial screening, 66 articles underwent full-text review and five articles were finally selected for analysis. Results: None of the studies was conducted in Korea. Only one study used a randomized control trial design. The forms of bereavement care reviewed included a provision of a memory package, grief information, and emotional and/or social support from peers or health care providers. The effectiveness of bereavement care was measured by including grief, social support, and depression. Conclusion: Bereavement care can be considered to be beneficial for relieving grief reactions and enhancing the personal growth of bereaved parents. Future research should assess the needs of bereaved parents in Korea. Nurses may play a role in developing the bereavement care for parents.

scholarly journals Palliative Care for Children with Central Nervous System Malignancies

2018 ◽  
Vol 5 (4) ◽  
pp. 85 ◽  
Author(s):  
Peter Baenziger ◽  
Karen Moody
Keyword(s):  
Central Nervous System ◽  
Palliative Care ◽  
Nervous System ◽  
Symptom Burden ◽  
Medical Specialty ◽  
Pediatric Palliative Care ◽  
Risk Of Death ◽  
Life Threatening ◽  
Oncology Care

Children with central nervous system (CNS) malignancies often suffer from high symptom burden and risk of death. Pediatric palliative care is a medical specialty, provided by an interdisciplinary team, which focuses on enhancing quality of life and minimizing suffering for children with life-threatening or life-limiting disease, and their families. Primary palliative care skills, which include basic symptom management, facilitation of goals-of-care discussions, and transition to hospice, can and should be developed by all providers of neuro-oncology care. This chapter will review the fundamentals of providing primary pediatric palliative care.

Meaning Making in Wartime Bereavement: Lessons Learned From Bereaved Parents and Siblings

2016 ◽  
Vol 76 (2) ◽  
pp. 103-121 ◽  
Author(s):  
Christina Harrington
Keyword(s):  
Qualitative Study ◽  
Family Of Origin ◽  
Meaning Making ◽  
Family Members ◽  
Military Culture ◽  
Lessons Learned ◽  
Bereaved Parents ◽  
Rich Data

Wartime deaths are traumatic and leave many grieving families in their wake. Yet, the unique, nuanced bereavement needs and experiences of those who remain are largely unknown. This Canadian, qualitative study examined the bereavement experiences of family of origin, bereaved during the mission to Afghanistan. The findings provide rich data on the predominant ways in which family members found and made meaning following the death and the ways in which military culture influenced the meanings made.

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