Parental decision making in pediatric cancer end-of-life care: using focus group methodology as a prephase to seek participant design input.
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.
Tomlinson
Deborah
D
Population Health Sciences, Hospital for Sick Children, 123 Edward Street, Toronto, Ont., Canada M5G 1E2. deborah.tomlinson@sickkids.ca
Capra
Michael
M
Gammon
Janet
J
Volpe
Jocelyne
J
Barrera
Maru
M
Hinds
Pamela S
PS
Bouffet
Eric
E
Geenberg
Mark L
ML
Baruchel
Sylvain
S
Llewellyn-Thomas
Hilary A
HA
Sung
Lillian
L
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*