Browsing by Author "Cao, Viena T."

Now showing 1 - 2 of 2
  • Thumbnail Image
    Item
    Health-related quality of life in parents and partners of people with type 1 diabetes: Development and validation of type 1 diabetes and life (T1DAL) measures
    (American Psychological Association, 2021) Hilliard, Marisa E.; Minard, Charles G.; Marrero, David G.; de Wit, Maartje; DuBose, Stephanie N.; Verdejo, Alandra; Jaser, Sarah S.; Kruger, Davida; Monzavi, Roshanak; Shah, Viral N.; Wadwa, R. Paul; Weinstock, Ruth S.; Thompson, Debbe; Cao, Viena T.; Anderson, Barbara J.; Medicine, School of Medicine
    Introduction: Despite the significant impact of type 1 diabetes (T1D) on family, few instruments are available to assess health-related quality of life (HRQOL) among family members of people with T1D. This study aimed to develop and evaluate the psychometric properties of new measures of diabetes-specific HRQOL for parents and partners of people with T1D. We report on the multistep development and validation process for the self-report Type 1 Diabetes and Life (T1DAL) measures, with versions for parents of youth age <8, 8-11, 12-17, and 18-25 years, and for partners of people age ≥18 years with T1D. Method: First, we conducted qualitative interviews (total parents/partners n = 38) to develop draft measures and piloted them (total n = 20). Next, we tested the measures' psychometric properties. Participants (total across versions n = 813) at six T1D Exchange Clinic Network sites completed the appropriate T1DAL measure and validated measures of related constructs. We then reduced each T1DAL measure to 20-30 items in length based on psychometric data and participant feedback. Eleven participants reviewed the final measures via cognitive debriefing. Results: The T1DAL measures for parents and partners demonstrated good internal consistency (α = .80-.88) and test-retest reliability (r = .73-.86). Correlations with measures of general quality of life, generic and diabetes-specific HRQOL, and diabetes burden demonstrated construct validity. Factor analyses identified 3-4 subscales/measure. Participants reported being satisfied with the shortened measures, which took 5-10 minutes to complete. Discussion: The new T1DAL measures for parents and partners of people with T1D are reliable, valid, and ready for use in research and clinical settings.
  • Thumbnail Image
    Item
    "We are a family with diabetes": Parent perspectives on siblings of youth with type 1 diabetes
    (American Psychological Association, 2021) Cao, Viena T.; Anderson, Barbara J.; Eshtehardi, Sahar S.; McKinney, Brett M.; Thompson, Deborah I.; Marrero, David G.; Hilliard, Marisa E.; Pediatrics, School of Medicine
    Having a child with type 1 diabetes (T1D) impacts the entire family system. Parental distress and burden have been well studied, but other family members, including siblings, have received little attention. Based on research about family life and sibling experiences in other chronic condition populations (e.g., autism, cancer), we expected parents of youth with T1D would report that siblings participated in T1D management and that T1D had a psychological impact on siblings. As part of a larger qualitative study, parents of youth with T1D age 5-17 (M = 10.8 ± 3.6 years) participated in semistructured interviews about T1D-specific health-related quality of life. For this study, we conducted secondary analyses on transcripts from 20 parents (95% mothers) from households with at least 1 sibling of the child with T1D. Three themes emerged: (a) siblings share the workload and help with T1D management, (b) T1D takes an emotional toll on siblings, and (c) parents feel guilty about prioritizing T1D over siblings' needs and desires. Parents recognized siblings have impactful roles in T1D management and family functioning. Future research into these themes can guide clinical and research efforts to develop sibling-inclusive resources and interventions for families with T1D. Enhancing family-focused interventions to recognize and support the needs of siblings may ultimately improve family T1D-related quality of life.