title: Challenges to participation in paediatric palliative care research: a review of the literature.
abstract: It has been identified that there is a need for increased palliative care research within the paediatric setting. The assessment of parental views is necessary for this population. However, the conduct of research and recruitment of participants is often challenging. While conducting a study that involved parents of children receiving palliative or end-of-life care, the authors found that there were particular challenges to recruiting these parents. This comprehensive review of the literature aims to address the ethical and recruitment issues of involving parents of children that are receiving palliative or end-of-life care. Key elements, that may maximize completion of research and a more representative sample, are also discussed. These elements include obtaining the opinions on study design and interview script from experienced families and maximizing the partnership between health care professionals and the research team.
authors: Child Health Evaluative Sciences, Hospital for Sick Children, Toronto, Ontario, Canada. Debarah.Tomlinson@sickkids.ca
authors: Deborah
authors: D
authors: Tomlinson
authors: Ute
authors: U
authors: Bartels
authors: Eleanor
authors: E
authors: Hendershot
authors: Julie
authors: J
authors: Constantin
authors: Glynis
authors: G
authors: Wrathall
authors: Lillian
authors: L
authors: Sung
mesh_terms: D001291:Attitude of Health Personnel; D002648:Child; D006801:Humans; D010166:Palliative Care / Q000941:ethics*; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D012107:Research Design / Q000592:standards; D019452:Terminally Ill / Q000523:psychology*