Objective: To identify factors that contribute to burden and resilience among caregivers of persons with Parkinson’s Disease (PD) in the Midwestern United States.

Background: Family members of persons with PD often assume the role of informal caregivers. Although caregiver burden is a documented challenge associated with PD, instances may go unaddressed in rural settings with limited access to specialized care. Understanding factors associated with burden and resilience may aid in developing tools to promote caregiver wellbeing and sustained, effective care [1].

Method: Caregivers of persons with PD were recruited in the Midwest. Participants completed semi-structured interviews related to caregiving tasks, perceived challenges, reward, motivation, resources, and relationships. Interviews were audio recorded, transcribed, and de-identified. In a two-phase thematic analysis, trends in responses were documented and organized into themes, sub-themes, and codes. Instances of codes were then located in transcripts and themes were refined.

Results: Twenty caregivers (17 female, mean age 71.0 ± 8.5 years SD, caregiving duration 7.3 ± 5.5 years SD) completed interviews. Participants indicated increased burden when they felt unsuccessful at caregiving-related tasks (task-related strain), provided emotional support during especially challenging episodes (emotional strain), or experienced obstacles that limited the efficacy of care (logistical strain). Advanced disease progression and symptom severity were associated with increased reports of burden-related themes. Caregivers described greater capacity for resilience when they received adequate social support—including from support groups, exercised agency over their environment and care-related decisions, practiced healthy habits, accessed informational resources, and maintained strong relationships. Some participants perceived a tradeoff between the desirability of a rural lifestyle with additional task-related and logistical challenges associated with rural caregiving.

Conclusion: Themes from interviews were consistent with literature from multiple cultures [2,3]. Rural caregivers may also experience unique sources of logistical and task-related strain. Tools and interventions developed to support caregivers may focus on supporting resilience-related factors and mitigating burden-related factors while being accessible to rural populations.

References: 1. Aamodt WW, Kluger BM, Mirham M, et al. Caregiver burden in Parkinson disease: a scoping review of the literature from 2017-2022. Journal of Geriatric Psychiatry and Neurology 2024;37(2):96-113.
2. Fekonja Z, Irgolič N, Vrbnjak D. Family members’ experiences of everyday caregiving for a family member living with Parkinson’s disease: a qualitative thematic analysis study. BMC Nursing 2024;23(1):98.
3. Zhong X, Song PP, Wang Z, Chen H. Resilience building among Chinese family caregivers of older people with Parkinson’s disease in Shanghai. Health & Social Care in the Community 2022;30(5):e2395-e2405.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/burden-and-resilience-among-rural-caregivers-of-persons-with-parkinsons-disease/