BACKGROUND: Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions of caregiving. AIM: To understand family members' perception of their role, and of the challenges and rewards of PD caregiving. METHOD: Using a qualitative descriptive research design, we conducted semi-structured interviews with current and former PD carepartners . Interviews were audio-recorded, de-identified, and transcribed verbatim. Data were coded and analyzed to identify themes. RESULTS: We identified 5 themes: It was hard to cope with the unpredictable daily and longer-term fluctuations in PD symptoms; . Carepartners felt unprepared and were saddened by the patient's and their own losses; Though stressful, carepartners resisted associating caregiving with the term "burden"; Carepartners saw their role as being less of "givers" and more of partners in disease management and Caregiving was seen as a "gift" that enabled carepartners to express love and experience personal growth. CONCLUSIONS: Despite challenges PD carepartners view their role as "partners" in the management of the disease and find meaning and strength in caregiving. A palliative care approach emphasizing the positives and challenges of caregiving may provide carepartners with better support.
