Original Article Gender imbalance in pediatric palliative care research samples Palliative Medicine 0(00) 1–10 ! The Author(s) 2009 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216309354396 pmj.sagepub.com Mary Ellen Macdonald Oral Health and Society Research Unit, Faculty of Dentistry, McGill University, Montreal, Quebec, Canada; Palliative Care Program, Montreal Children s Hospital of the McGill University Health Centre, Montreal, Quebec, Canada. Gillian Chilibeck Centre for Research on Children and Families, McGill University, Montreal, Quebec, Canada William Affleck Centre for Research on Children and Families, McGill University, Montreal, Quebec, Canada Susan Cadell Manulife Centre for Healthy Living, Lyle S Hallman Faculty of Social Work, Wilfrid Laurier University, Waterloo, Ontario, Canada 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. Keywords Pediatric palliative care, parental perspectives, gender, sampling, research methods Background Pediatric palliative care is a growing field of health care specialization and research. 1,2 A key aspect of improv- ing palliative care services for children is understanding the values and needs of the child’s parents. 3 In an attempt to effectively integrate parents in pediatric end-of-life care and treatment, psychosocial research is increasingly focusing on parental experiences and perspectives, including on bereavement. As a result, ‘parental perspectives’ research has become a popular category in many areas of pediatric palliative care. Both qualitative and quantitative research has been conducted, covering areas of concern such as commu- nication, 4–7 decision-making, 8–11 bereavement, 12–19 perceptions of quality of end-of-life care, 20–23 and even parents’ experiences of research participation. 24–26 Parental perspectives research is, however, prone to certain logistical and ethical challenges. One key meth- odological difficulty is in the area of sampling. In psy- chosocial research in general, research samples tend to include more women than men. 27–29 While the majority of children have both a mother and a father involved in some capacity in their care, even the most cursory examination of pediatric palliative care literature sug- gests that fathers are much less present in research sam- ples than mothers. Gender differences are relevant to many areas of parenting, 30 including parenting a child with a chronic illness, 31–33 or critical illness. 28,34–36 Corresponding author: Mary Ellen Macdonald, PhD, Oral Health and Society Research Unit, Faculty of Dentistry, McGill University, Montreal, Quebec, Canada. Email: mary.macdonald@mcgill.ca Palliat Med OnlineFirst, published on December 16, 2009 as doi:10.1177/0269216309354396