Clinical Practice Guidelines for Perinatal Bereavement Care: A Systematic Quality Appraisal Using AGREE II Instrument
Hospice Care; Factual Database; Human; Reproducibility
PURPOSE: This study aimed to evaluate and analyze the methodological quality of the published clinical practice guidelines (CPGs) for perinatal bereavement care and provide a reference for implementing best clinical practices. METHOD(S): We performed a systematic and comprehensive search in five electronic databases (PubMed, The Cochrane Library, Web of Science, CNKI, Wan Fang Database), eight guideline databases, and six websites of professional organizations from March 2021 to June 2021. Four researchers used the Appraisal of Guidelines for Research and Evaluation (AGREE II) instrument to appraise the selected CPGs independently. The inter-rater reliability of AGREE II domains was calculated using the intraclass correlation coefficient with 95% CI. RESULT(S): We included a total of 8 CPGs. The mean scores of six domains ranged from the lowest score of 46.61% (editorial independence) to the highest score of 87.85% (clarity of presentation). Subgroup analysis showed no statistical difference. Each domain achieved "good" and "very good" intraclass reliability. Two CPGs were deemed as grade A (strongly recommended), five were rated as grade B (recommended with modifications), and one was evaluated as grade C (not recommended). CONCLUSION(S): Healthcare professionals in obstetrics and neonatology play an important role in helping bereaved parents and families to cope with perinatal loss. High-quality CPGs for perinatal bereavement care can serve as useful resources to improve the quality and outcomes of clinical practice. More efforts should be made to disseminate the best practices for perinatal bereavement care. When implementing GCPs in countries or regions with different backgrounds, professional translations, strict validations, and cultural adaptations should be taken into account.Copyright © 2022 Elsevier Inc. All rights reserved.
Zhuang S; Ma X; Xiao G; Zhao Y; Hou J; Wang Y
Journal of Pediatric Nursing
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.pedn.2022.04.007" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.04.007</a>
Community-Based Pediatric Palliative Care: How Services Support Children's and Families' Quality of Life
mental health; child; article; controlled study; human; male; palliative therapy; pain; sibling; spiritual care; quality of life; interview; interpersonal communication; cost effectiveness analysis; adolescent; socialization; caregiver; convenience sample; bereavement support; family; clinician; participatory research; self care; psychological well-being; physical well-being; disease management; community; community integration
Background: The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to improve children and families' quality of life (QOL). <br/>Objective(s): To identify perceived domains of QOL important for children and families and to understand whether and how CBPPC supports QOL. <br/>Design(s): A community-based participatory research framework was used to develop recruitment and data collection materials for eight focus groups and seven interviews. Collected data were transcribed and analyzed with an inductive approach. Setting/Subjects: A convenience sample of 33 PPCN caregivers, 20 providers, and seven key informants, including policymakers, community organizations, and hospital-based clinicians, were interviewed virtually in the United States. Measurements: Perceived QOL domains for children and families, respectively, and perceived impact of CBPPC services on QOL. <br/>Result(s): Reported QOL domains described as important for children were socialization/community integration and accessibility; expression/play; and physical wellness. Control or autonomy, psycho-emotional wellness, and self-care were identified as important for families. Clinical services were described as "integral to mental health" through offered spiritual support; advocacy in the community; and education. PPCN's integrative services were noted as distractions from pain and helped improve communication and bonding. Sibling support and bereavement care were also mentioned as impactful on QOL. <br/>Conclusion(s): Family-centered CBPPC was described as supportive of children's and families' QOL. Future studies should consider using population-based QOL measures, leveraging the QOL domains identified through this analysis and other outcome measures in a cost-effectiveness analysis.
Wang Y; Ferreira E; Savageau J; Beitman A; Young M; Gabovitch E; Merriam G; Jozan A; Padgett K; Bateman S
Journal of Palliative Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2023.0147" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0147</a>
The impact of clinical trial enrollment on specialty palliative care utilization in pediatric patients with high-grade gliomas
Humans; Child; palliative care; Palliative Care; Disease Progression; Palliative Care; Clinical Trials as Topic; clinical trial; Glioma; Glioma/therapy/pathology; high-grade glioma; pediatric brain tumor
BACKGROUND: Palliative care (PC) provides numerous benefits for children with cancer. Pediatric patients with high-grade glioma (HGG) are particularly well suited for early PC involvement given their high symptom burden and poor prognosis. However, studies continue to reveal that children with cancer, including HGG, have delayed PC involvement. We hypothesized that clinical trial enrollment may lead to a lack of or delay in PC involvement in this population. PROCEDURE: For each patient in our cohort of 43 pediatric patients with HGG, demographic, diagnostic, therapeutic, clinical trial enrollment, and PC information were collected. Statistical analysis was performed comparing PC characteristics between patients who did and did not enroll in a clinical trial. RESULTS: Seventy-two percent of patients had at least one visit with a PC provider. Fifty-six percent of patients enrolled in a clinical trial with HGG-directed therapy. Seventy-one percent of patients who enrolled in a clinical trial received specialty PC compared to 74% of non-trial participants (p = 1.000). Patients who enrolled in clinical trials received PC earlier in their disease course measured in days before death (mean = 177 days) compared to those who did not enroll (mean = 113 days, p = .180), though not statistically significant. CONCLUSIONS: The prevalence of clinical trial enrollment is high in patients with HGG and will likely increase as the genomic/epigenomic landscape of these tumors is better understood. As such, our data reassuringly suggest that trial participation does not interfere with the receipt of specialty PC in this population.
Roberts HJ; Wang Y; Spruit JL; Taylor L; Franson AT
Pediatric Blood and Cancer
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.30115" target="_blank" rel="noreferrer noopener">10.1002/pbc.30115</a>
Posttraumatic growth in former Vietnam prisoners of war
Humans; Male; Aged; social support; Age Factors; Social Adjustment; Regression Analysis; Psychological Tests; Psychiatric Status Rating Scales; Stress Disorders; Post-Traumatic; Prisoners; Vietnam Conflict
This study examined posttraumatic growth in 30 male veterans captured and held as prisoners of war during the Vietnam War. Participants were assessed with structured diagnostic interviews administered by trained clinicians as well as with the Posttraumatic Growth Inventory (PTGI) and other questionnaires measuring dispositional optimism, religious coping, social supports, and purpose in life. Mean age (standard deviation-SD) of participants was 66.7 (6.0) years. Mean total PTGI score (SD) was 66.3 (17.5), indicating a moderate degree of posttraumatic growth. The most strongly endorsed items corresponded to the Appreciation of Life and Personal Strength factors. The group as a whole was optimistic and reported moderate use of positive religious coping. Posttraumatic growth did not significantly differ in repatriates with and without psychopathology, but it was significantly positively correlated with dispositional optimism. In the final regression model, length of captivity and optimism were significant predictors of posttraumatic growth. Our findings confirm that it is possible to achieve long-lasting personal growth even in the face of prolonged extreme adversity. Prospective studies are needed to further evaluate whether pre-existing traits such as optimism can predict growth after trauma.
2008
Feder A; Southwick SM; Goetz RR; Wang Y; Alonso A; Smith BW; Buchholz KR; Waldeck T; Ameli R; Moore J; Hain R; Charney DS; Vythilingam M
Psychiatry
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1521/psyc.2008.71.4.359" target="_blank" rel="noreferrer">10.1521/psyc.2008.71.4.359</a>