Abstract
The purpose of this qualitative phenomenological study was to gain a deeper understanding of attitudes, beliefs, and personal experiences about reproductive decision making and its influence on QOL from the perspective of those with HD and their spouses. OTs are uniquely trained to evaluate and provide interventions based on client factors that may impact health, well-being, and participation in occupations. Implications for OT were discussed.
Primary Author and Speaker: David LeVan
Contributing Authors: Kathryn Fillman, Juliet Corrigan, Rachael Mack, Zoe Maslowski
Huntington’s disease (HD) has a 50% inheritance rate and combined with progressive physical, emotional, and psychosocial challenges directly impacts quality of life (QOL), family dynamics, and reproductive decision making of people diagnosed with HD. In addition to coping with the disease, people with HD experience an additional burden of knowing how and when to communicate with spouses and family members about their attitudes and beliefs toward reproductive decision making. The lack of research concerning HD and reproductive choices was evident through our literature review; therefore, this study was conducted.
The purpose of this qualitative phenomenological study was to gain a deeper understanding of attitudes, beliefs, and personal experiences about reproductive decision making and its influence on QOL from the perspective of those with HD and their spouses. Participants with a diagnosis of HD and their spouses were recruited from a local HD support group. All participants were age 60 and over. Two married people with HD, their spouses and one single person with HD participated in a focus group discussion to allow for open conversation between participants and researchers. We included spouses in our population because they play an important role in their loved one’s decision-making process. Guided interview questions derived from the literature review and probing were utilized to facilitate participants’ point of view.
Through thematic and conceptual qualitative analysis, five general themes about QOL and reproductive decision making emerged from the focus group discussion and included Longing for a Cure, Family Ignorance, Freedom of Choice, Spreading Awareness and Education. The themes Family Ignorance, Spreading Awareness and Education were consistent with previous studies whereas Longing for a Cure and Freedom of Choice offered new insights regarding QOL and reproductive decision making.
The findings of this small study can provide opportunities for shared experiences and insight for other people with HD who are making the same decisions. This is an issue that really matters to people with HD and each person’s journey is different. A greater understanding of QOL and reproductive choices of people with HD can improve advocacy and intervention provided by occupational therapists.
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