Adaptive Resilience in Parkinson's Caregiving: A Qualitative Study of Lived Experience and Implications for Practice

Parkinson's disease (PD) is a progressive neurodegenerative disorder that requires increasing care over time. Care partners, often family members, play a critical role in supporting individuals with PD, yet their experiences are understudied. Existing literature focuses largely on care partner burden and quality of life, often neglecting the nuanced, evolving nature of caregiving and role adaptation. Occupational therapy plays a vital role in supporting care partners, yet further research is needed to understand their lived experiences through an evidence-based lens.

This study explores how care partners of people with PD experience and develop resilience over time, with an emphasis on emotional, relational, and occupational adaptation.

Using a qualitative, phenomenological approach, 12 care partners participated in semi-structured interviews. Descriptive standardized measures (Q-LES-Q and ZBI) were also collected to contextualize participant well-being and caregiving burden without shaping analysis. Data were analyzed using the Stevick-Colaizzi-Keen method of phenomenological analysis, supported by researcher reflexivity and triangulation to ensure rigor.

Three primary themes emerged: (1) The Power of Adaptive Resilience, reflecting internal growth and mindset shifts; (2) The Quiet Struggle, highlighting grief, guilt, and emotional isolation; and (3) Through the Gray, capturing the ambiguity and evolving nature of caregiving. Participants described caregiving as a marathon marked by emotional negotiation and the pursuit of meaning.

Care partners demonstrated adaptive resilience not as passive endurance, but as an active process of transformation. Centering care partner voices can inform more holistic, family-centered care models.