Purpose: The purpose is to describe family members’ perceptions of loss across the Huntington Disease (HD) trajectory. The longitudinal trajectory represents persons at-risk for or affected with HD who are characterized by: 1) pre-medical diagnosis, post-predictive testing; 2) post-medical diagnosis, living at home; or 3) post-medical diagnosis, living in a care facility.
Background: HD is an autosomal dominant, progressive, and incurable adult-onset neuropsychiatric disorder. Predictive DNA testing allows asymptomatic individuals to clarify their risk of developing HD. The nature and extent of loss family members experience across the HD trajectory is unknown.
Subjects: This presentation reports preliminary results from a larger study undertaken to determine health concerns of families with HD and strategies used to address those concerns. Family members ages 14-81 were interviewed across 3 U.S. sites (N=70).
Method and Analysis: A qualitative descriptive research method using focus group (N=14) methodology was used. Data were analyzed through thematic content analysis.
Results: Evidence of ambiguous loss was present in role and relationship changes and interpretation of symptom presentation. Family members described the person at-risk for or affected with HD as physically present and psychologically absent to varying degrees. These results are consistent with prior descriptions of ambiguous loss as incomplete or uncertain loss when persons are either physically present and psychologically absent or physically absent and psychologically present. Family members experienced ambiguous loss throughout the disease trajectory and across age groups. Responses to ambiguous loss were varied.
Conclusions: Implications include potential threats to family members’ personal health and to family well-being and function. In contrast, participants’ positive responses may help support self-sustaining efforts and family health. Recognizing and understanding experiences of ambiguous loss may lead to the development of interventions aimed at assisting families with chronic illnesses to cope with such loss.
Supported by NINR R0107970 to J.K.Williams
Session #1219 - Poster Session I
The 29th Annual MNRS Research Conference (April 1-4, 2005)