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

Objective: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. Background: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. Methods: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000–2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). Results: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. Discussion: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting

COPING, PARENTING AND DECISION MAKING FOR MOTHERS OF INFANTS RECEIVING TREATMENT FOR A CONGENITAL ANOMALY IN THE NICU

Background: A prenatal or postnatal congenital diagnosis is a known source of parental distress and disrupts parental adaptation, often to a greater degree in mothers. The purpose of this study was to explore the coping, parenting, and decision-making adaptation processes for mothers who receive a prenatal vs. postnatal congenital diagnosis for their infant who requires treatment immediately after birth in the NICU. Methods: This study utilized a cross-sectional, sequential explanatory mixed methods design. Quantitative surveys and in-depth semi-structured qualitative interviews were conducted with mothers faced with decision making for their infant in the NICU diagnosed with a congenital anomaly between July 2016 and January 2018. T-tests and correlations were used to analyze quantitative data, qualitative content analysis was used to analyze qualitative data, and data matrices were used to combine quantitative and qualitative data. Results: There were 37 participants in the quantitative sample (mean age 30.6 ±6.0) and 20 of these participants (mean age 31.25 ±5.73) agreed to qualitative interviews; approximately two-thirds of participants were White, 25% African American, and 10% were Hispanic. On quantitative surveys, mothers in the postnatal group demonstrated more engaged decision making (86%), compared with mothers in the prenatal group (52%). Mothers in the prenatal group utilized significantly more acceptance coping than mothers in the postnatal group (U=78; p=0.01). Parenting values among mothers in the prenatal and postnatal groups were similar; both groups placed greatest priority on the parenting values of making medical decisions and focusing on their child’s health, and lowest value on keeping a positive attitude. Qualitative findings revealed barriers and facilitator themes of coping, parenting, and decision making, including access, behavioral, cognitive, communication, emotional, environmental, relational, and spiritual barriers and facilitators. Mixed methods findings explained that mothers in both the prenatal and postnatal groups were engaged in decision making, but at different time points and in different ways. Conclusions: Overall, the findings show trends in NICU coping, parenting and decision-making for mothers who have received a prenatal vs. postnatal diagnosis. Future researchers should explore study variables in specific congenital anomaly populations and racial/ethnic minority populations where congenital anomalies are more prevalent