ABSTRACT
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 (n = 16). Interviews were audio-recorded, de-identified, and transcribed verbatim. Data were coded and analyzed to identify themes. RESULTS: We identified 5 themes: (a) Unpredictability is the hardest part of caregiving. It was hard to cope with the unpredictable daily and longer-term fluctuations in PD symptoms; (b) Disease progression and multiple symptoms contribute to carepartners' emotional distress. Carepartners felt unprepared and were saddened by the patient's and their own losses; (c) Caring for a family member is not a "burden." Though stressful, carepartners resisted associating caregiving with the term "burden"; (d) Caregiving is a partnership. Carepartners saw their role as being less of "givers" and more of partners in disease management; and (e) Caregiving is an opportunity for personal satisfaction, joy, and growth. 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.
ABSTRACT
INTRODUCTION: Outpatient palliative care offers an opportunity to improve the quality of life of Parkinson's disease (PD) patients and families. While there are efforts to improve clinicians' palliative care knowledge and skills, there is limited knowledge on patients and carepartners' knowledge and perceptions of palliative care. As part of a larger study on implementing outpatient palliative care, this study aimed to understand patients' and carepartners' knowledge and perceptions of palliative care, and their palliative care needs and preferences prior to the implementation. METHODS: Using qualitative descriptive research design, we completed semi-structured interviews with 47 patients and carepartners prior to the project implementation. De-identified transcripts of interviews were coded and analyzed. RESULTS: Five themes were identified that describe patients' and carepartners' palliative care knowledge, perceptions, needs and preferences: (a) Patients and carepartners have varied knowledge and perceptions of palliative care (b) Non-motor symptoms are challenging for patients and carepartners, (c) Addressing patients' grief and emotional needs is important to patients and carepartners, (d) Carepartners want a place for emotional care, well-being, and strategizing and (e) Patients and carepartners desire anticipatory guidance and care planning. Study participants desired guidance to manage non-motor symptoms, support for patients' emotional needs and for carepartners, and for anticipatory guidance to guide future planning. CONCLUSIONS: Despite varied palliative care knowledge, PD patients and carepartners universally desire care that addresses their palliative care needs. Palliative care education and integration of palliative care approaches into standard care may facilitate increased acceptance of outpatient palliative care throughout the disease trajectory.
