Caregiver Contributions to Self-Care in Parkinson's Disease: A Qualitative Descriptive Study

Parkinson's disease (PD) is the second most common neurodegenerative disorder after Alzheimer's disease, and is characterized by motor symptoms such as bradykinesia, rigidity, and reduced movement automaticity. Caregiver contributions (CC) to self-care in PD represent an important resource for supporting people with PD. However, this topic has not yet been fully explored.

To explore CC to self-care in PD across the domains of CC to self-care maintenance, monitoring, and management.

A qualitative study design was conducted using a combined deductive and inductive approach. An initial deductive framework guided the analysis, while an inductive process allowed the identification of additional codes emerging from the interview data.

Twenty semi-structured interviews were conducted. Caregivers of people with PD were 75% women, with a mean age of 63.7 years, and were 90% spouses and 95% living with the patient. The analysis showed that the CC to self-care emerges across all domains: in self-care maintenance, through support for medication adherence, physical activity, safety, and diet; in self-care monitoring, through support in daily activities, routine symptom monitoring, and alert system monitoring; and in self-care management, through symptom management strategies and caregiver attitudes. More broadly, this contribution also emerged in relation to caregiving difficulties, interactions with healthcare professionals, and the information that guides self-care.

The findings from this study showed that caregivers of persons with PD play a significant role in CC to self-care maintenance, monitoring, and management, particularly through non-pharmacological strategies.

These data are fundamental for guiding educational interventions aimed at the caregivers of patients with PD.