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Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network
- Source :
- Journal of genetic counseling, vol 27, iss 5, Palmer, CGS; McConkie-Rosell, A; Holm, IA; LeBlanc, K; Sinsheimer, JS; Briere, LC; et al.(2018). Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network. JOURNAL OF GENETIC COUNSELING, 27(5), 1087-1101. doi: 10.1007/s10897-018-0228-6. UCLA: Retrieved from: http://www.escholarship.org/uc/item/22q6q61h
- Publication Year :
- 2018
- Publisher :
- eScholarship, University of California, 2018.
-
Abstract
- The burden of living with an undiagnosed condition is high and includes physical and emotional suffering, frustrations, and uncertainty. For patients and families experiencing these stressors, higher levels of empowerment may be associated with better outcomes. Thus, it is important to understand the experiences of patients with undiagnosed conditions and their families affected by undiagnosed conditions in order to identify strategies for fostering empowerment. In this study, we used the Genetic Counseling Outcome Scale (GCOS-24) to assess levels of empowerment and support group participation in 35 adult participants and 67 parents of child participants in the Undiagnosed Diseases Network (UDN) prior to their UDN in-person evaluation. Our results revealed significantly lower empowerment scores on the GCOS-24 in adult participants compared to parents of child participants [t(100) = - 3.01, p = 0.003, average difference = - 11.12, 95% CI (- 3.78, - 18.46)] and no significant association between support group participation and empowerment scores. The majority of participants (84.3%, 86/102) are not currently participating in any support groups, and participation rates were not significantly different for adult participants and parents of child participants (11.4 vs. 19.7%, respectively, FE p = 0.40). Open-ended responses provided additional insight into support group participation, the challenges of living with undiagnosed conditions, and positive coping strategies. Future research will evaluate the extent to which empowerment scores change as participation in the UDN unfolds.
- Subjects :
- Parents
Adult
Male
Decision Making
Clinical Sciences
Pilot Projects
Genetic Counseling
Clinical Research
Surveys and Questionnaires
Diagnosis
Humans
Patient Reported Outcome Measures
Adaptation
Child
Genetics & Heredity
Undiagnosed condition
Uncertainty
Reproducibility of Results
Infant
Disease Management
Undiagnosed Diseases Network
Support groups
Power
Psychological
Female
Empowerment
Undiagnosed disease
Subjects
Details
- Database :
- OpenAIRE
- Journal :
- Journal of genetic counseling, vol 27, iss 5, Palmer, CGS; McConkie-Rosell, A; Holm, IA; LeBlanc, K; Sinsheimer, JS; Briere, LC; et al.(2018). Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network. JOURNAL OF GENETIC COUNSELING, 27(5), 1087-1101. doi: 10.1007/s10897-018-0228-6. UCLA: Retrieved from: http://www.escholarship.org/uc/item/22q6q61h
- Accession number :
- edsair.dedup.wf.001..29756da8ceb75a1a6596314c16fa16c9