Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network

Journal of Genetic Counseling
Christina PalmerUndiagnosed Diseases Network

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 pa...Continue Reading

References

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Citations

Jun 7, 2019·PloS One·Gabriella WasersteinMark Hyman Rapaport
Jan 27, 2019·Journal of Genetic Counseling·Ellen F MacnamaraChristina G S Palmer
Oct 28, 2020·Journal of Genetic Counseling·Courtney M StudwellKimberly LeBlanc
Oct 17, 2020·American Journal of Medical Genetics. Part a·Chelsea M WithersAideen McInerney-Leo
Mar 17, 2021·Annual Review of Genomics and Human Genetics·Laura M AmendolaSarah Scollon

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