title: Parental decision making in pediatric cancer end-of-life care: using focus group methodology as a prephase to seek participant design input.
abstract: The ultimate aim of our research program is to provide strategies that facilitate parental decision-making for parents of children with cancer receiving end-of-life care. As a first step to develop this program, we needed insight into parents' reactions and opinions about the research methods planned for a larger study. In particular, we needed their opinions about the general experience of making the decision between palliative cytotoxic chemotherapy and supportive care alone and the factors that parents regard as important when making this decision. In addition, we wished to know whether the methodology proposed for the future study was easy to understand and whether it might cause unnecessary emotional trauma. Finally, we asked their opinions regarding the appropriate target sample of parents to include in the future study. Qualitative data about these issues were collected using focus group methodology involving seven participants. The comments made during the focus group discussions were content-analyzed for common themes. The results from the focus group discussion led to particular modifications in the proposed design and interview strategies planned for the future larger study. We found it was extremely beneficial to include a focus group pre-phase in a study that will interview parents in a high sensitivity area.
authors.affiliation: Population Health Sciences, Hospital for Sick Children, 123 Edward Street, Toronto, Ont., Canada M5G 1E2. deborah.tomlinson@sickkids.ca
authors.forename: Deborah
authors.initials: D
authors.lastname: Tomlinson
authors.forename: Michael
authors.initials: M
authors.lastname: Capra
authors.forename: Janet
authors.initials: J
authors.lastname: Gammon
authors.forename: Jocelyne
authors.initials: J
authors.lastname: Volpe
authors.forename: Maru
authors.initials: M
authors.lastname: Barrera
authors.forename: Pamela S
authors.initials: PS
authors.lastname: Hinds
authors.forename: Eric
authors.initials: E
authors.lastname: Bouffet
authors.forename: Mark L
authors.initials: ML
authors.lastname: Geenberg
authors.forename: Sylvain
authors.initials: S
authors.lastname: Baruchel
authors.forename: Hilary A
authors.initials: HA
authors.lastname: Llewellyn-Thomas
authors.forename: Lillian
authors.initials: L
authors.lastname: Sung
mesh_terms: D000223:Adaptation, Psychological; D001294:Attitude to Health; D002648:Child; D003657:Decision Making; D017144:Focus Groups / Q000379:methods* / Q000706:statistics & numerical data; D006379:Helping Behavior; D006801:Humans; D009013:Morale; D020380:Needs Assessment / Q000458:organization & administration; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D024802:Nurse's Role / Q000523:psychology; D015404:Nursing Methodology Research; D009859:Oncology Nursing; D010290:Parents / Q000523:psychology*; D018579:Patient Selection; D018802:Patient-Centered Care; D010371:Pediatric Nursing; D011368:Professional-Family Relations; D016730:Program Development; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology; D012944:Social Support; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods / Q000523:psychology*