Gender imbalance in pediatric palliative care research samples

Abstract

We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative care using MEDLINE, CINAHL, and PsycINFO. Study selection inclusion criteria were: (1) published between 1988 and 2008; (2) in English; (3) conducted in North America; (4) focused on parents of children aged 0-18 years who were expected to die or had died; (5) had 'parent' in the title; and (6) focused on parents' experiences or on parents' perspectives regarding the child's illness/death. Keyword searches produced a list of 2103 studies, of which 45 met the criteria for inclusion. The ratio of mothers to fathers participating in the studies was examined. We found that there has been an increase in research on parental perspectives in pediatric palliative care over the last 5 years, but what constitutes 'parental' in this literature continues to be primarily 'maternal'. Mothers constituted 75% of the overall sample of parents. In only four studies was the gender imbalance addressed as one of the limitations of the study. There is a growing interest in parental perspectives in pediatric palliative care, but the research does not equally reflect the experiences and needs of mothers and fathers. Gender can shape experiences of both parenthood and grief; balanced gender sampling and accurate analysis is essential for research on 'parental perspectives'. Gender imbalance in research samples, designs, recruitment strategies, and data gathering methods must be addressed.

Of the Soul and Suffering: Mindfulness-Based Interventions and Bereavement

“…For instance, a measure of grief intensity was lacking in this case study and could be added to future studies to obtain a clearer picture of how this model affects grief. In addition, most studies with bereaved parents are conducted with mothers and the unique experiences and needs of fathers are not well represented in the literature (Macdonald et al 2010). Despite these limitations, mindfulness-based practices align well with social work values and may hold promise for helping those suffering from profound, irreversible losses.…”

Reporting of pediatric palliative care: A systematic review and quantitative analysis of research publications in palliative care journals

“…Of the total 97 articles on pediatric palliative care, there were 55 articles on clinicalpractice,[2022293335–404244–5052535557596063–6870747577808183–869295–100103106–110,112113] 8 articles on education,[30697376878890114] 7 articles on research,[2428435661104105] and 27 articles on administration. [212325–273132344151545862717278798289919394101102111115116] The relative reporting prevalence for the four categories is provided in Figure 5.…”

“…[2236384447495355678186929596109] There were six original articles[6973768790114] and two review articles[3088] among the eight articles on education, and two original articles,[56] and six review articles[24284361104105] among seven articles on research, respectively. Of the 27 articles on administration, there were 15 original articles[212358717278798294101102111115116] and 12 review articles.…”

“…Among the 34 review articles, 33 articles were narrative reviews[222425–2830–323436384143444749–5153–5561626781868991–939596104109] and 1 was a systematic review. [105]…”

Pediatric Palliative Care Research Comes of Age: What We Stand To Learn from Children with Life-Threatening Illness

“…While studies examining the experience of such parents exist, research samples often exhibit a marked gender imbalance, with little representation of fathers. 6 A more complete understanding of the experience of family members is needed to devise supportive interventions that will benefit a child's entire family.…”