Caregiver burden in Parkinson's disease: a mixed-methods study

Area of Science:

• Neurology
• Gerontology
• Psychology

Background:

• Informal caregiving for Parkinson's disease (PD) patients presents significant challenges, potentially leading to caregiver burden.
• Existing research on caregiver burden in PD lacks a comprehensive understanding of combined quantitative and qualitative findings.
• Addressing this gap is crucial for developing effective interventions to alleviate caregiver burden.

Purpose of the Study:

• To identify and characterize the determinants of caregiver burden among informal caregivers of individuals with PD.
• To lay the groundwork for creating targeted interventions aimed at reducing caregiver burden.

Main Methods:

• A sequential mixed-methods approach was employed, combining quantitative data from 504 PD patient-caregiver dyads with qualitative data from 17 caregivers.
• Quantitative measures included standardized questionnaires for caregiver burden, patient-related factors (depression, anxiety, illness acceptance, PD severity), caregiver-related factors (coping, activation, social support), and sociodemographics.
• Qualitative data were gathered through semi-structured interviews, analyzed using thematic analysis, while quantitative data were analyzed using multivariable regression.

Main Results:

• Higher caregiver burden was associated with the patient not being employed, cognitive decline, and psychological/emotional deficits in the PD patient.
• Caregiver-related factors such as low social support, concerns about the future, daily life restrictions, relationship changes, and avoidant coping styles were linked to increased burden.
• Integration of findings highlighted the impact of non-motor symptoms, relationship dynamics, and specific concerns on caregiver burden, with avoidant coping consistently predicting higher burden across Zarit Burden Inventory subscales.

Conclusions:

• Caregiver burden in Parkinson's disease is a multifaceted issue influenced by patient-specific, caregiver-specific, and interpersonal factors.
• The study underscores the value of mixed-methods research in comprehensively understanding caregiver burden in chronic diseases.
• Findings provide a foundation for developing personalized support strategies for informal caregivers of individuals with PD.