title: Using qualitative methods to guide clinical trial design: parent recommendations for intervention modification in type 1 diabetes.
abstract: Parents of young children with Type 1 diabetes assume significant responsibility for a complex daily illness regimen, yet little research has evaluated supportive interventions for this population. This study presents mixed-methods program evaluation data from participants who completed a five-session intervention designed to promote parent mastery of diabetes-related tasks and increase social and emotional support. Twelve parents (75% female) of young children with Type 1 diabetes completed a satisfaction survey following intervention completion. Additionally, four parents were selected for completion of an in-depth interview designed to elicit specific recommendations for program improvement. Results suggested high levels of satisfaction with the intervention program. Thematic coding of interview data revealed two clear directions for future research, including offering the intervention program closer to the time of diagnosis and enhancing educational and supportive offerings for parents and other caregivers. Incorporation of in-depth interviews and subsequent qualitative data analyses in addition to a quantitative satisfaction survey provided richly detailed data related to program evaluation and improvement. Results highlighted critical components for intervention refinement and provided a unique window into the experiences of parents of young children with Type 1 diabetes and the need for additional support in the months following diagnosis, both for themselves and other caregivers.
authors.affiliation: Department of Psychiatry and Behavioral Sciences, Children’s National Medical Center, Washington, DC 20010, USA. mmonagha@cnmc.org
authors.forename: Maureen
authors.initials: M
authors.lastname: Monaghan
authors.forename: Risa E
authors.initials: RE
authors.lastname: Sanders
authors.forename: Katherine Patterson
authors.initials: KP
authors.lastname: Kelly
authors.forename: Fran R
authors.initials: FR
authors.lastname: Cogen
authors.forename: Randi
authors.initials: R
authors.lastname: Streisand
mesh_terms: D000328:Adult; D002648:Child; D002675:Child, Preschool; D002986:Clinical Trials as Topic; D003922:Diabetes Mellitus, Type 1 / Q000628:therapy*; D019468:Disease Management; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D007406:Interview, Psychological; D008297:Male; D010290:Parents / Q000193:education* / Q000523:psychology; D017060:Patient Satisfaction; D015397:Program Evaluation / Q000379:methods*; D036301:Qualitative Research; D012107:Research Design