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Caregiver Contribution to self-care in people with Parkison’s Disease: a meta-synthesis

C. Tedesco, M. Petralito, R. Caruso, I. Milani, G. Pucciarelli (Rome, Italy)

Meeting: 2025 International Congress

Keywords: Parkinson’s

Category: Quality Of Life/Caregiver Burden in Movement Disorders

Objective: The aim of the meta-synthesis is to explore the literature to understand the role of caregiver contribution to the self-care in people with Parkinson’s disease (PD).

Background: People with PD may experience poor quality of life due to a variety of physical and psychological symptoms. Evidence suggests that self-care, a naturalistic decision-making process involving maintenance, monitoring, and management, positively impacts disease outcomes in chronic conditions. Similar to other chronic diseases, informal caregivers (family, relatives, and friends) may play a crucial role in supporting self-care in patients with PD.

Method: A metasynthesis was conducted following the approach of Sandelowski and Barroso. Major databases were searched, and the selected articles underwent critical appraisal using the Joanna Briggs Institute checklist.

Results: In total, 52 articles were found, with quality scores varying from 70% to 100%. It emerges that caregivers play a crucial role in supporting self-care in Parkinson’s disease across maintenance, monitoring, and management. In maintenance, they assist with daily activities, medication, prevention of falls, nutrition, and emotional support, especially during cognitive decline or crises like the COVID-19 pandemic. In monitoring, caregivers observe symptoms, adapt daily routines, and assess fall risks, though they may struggle with symptom severity evaluation. In management, they aid in fall prevention, communication, impulsive behaviors, and psychotic symptoms, using strategies like modifying environments, encouraging movement, and assisting with self-medication in DBS patients.

Conclusion: This meta-synthesis highlights the essential role of caregivers in supporting self-care for Parkinson’s disease, particularly in managing the home, providing physical and emotional assistance, and ensuring medication adherence. With PD’s progressive cognitive decline, caregivers play a key role in addressing motor symptoms, fall prevention, and psychological support. Caregiver contribution emerges as a cross-cutting aspect across all self-care dimensions, emphasizing its centrality in managing the chronic and degenerative challenges of PD.

References: Altaher, A., Chu, S. Y., Tan, J. S., Sathiyasenan, S. T., Hersh, D., & Mustaffa Kamal, R. (2023). “His tongue seems shorter”: Experiences of caregivers of managing communication with people with Parkinson disease in Malaysia. Topics in Geriatric Rehabilitation, 39(3), 203–211.

Berger, S., Chen, T., Eldridge, J., Thomas, C. A., Habermann, B., & Tickle-Degnen, L. (2019). The self-management balancing act of spousal care partners in the case of Parkinson’s disease. Disability and Rehabilitation, 41(8), 887–895. https://doi.org/10.1080/09638288.2017.1408707

Caggianelli, G., Alivernini, F., Chirico, A., Iovino, P., Lucidi, F., Uchmanowicz, I., Rasero, L., Alvaro, R., & Vellone, E. (2024). The relationship between caregiver contribution to self-care and patient quality of life in heart failure: A longitudinal mediation analysis. PloS ONE, 19(3), e0300101. https://doi.org/10.1371/journal.pone.0300101

Davey, C., Wiles, R., Ashburn, A., & Murphy, C. (2004). Falling in Parkinson’s disease: The impact on informal caregivers. Disability and Rehabilitation, 26(23), 1360–1366.

Durante, A., Paturzo, M., Mottola, A., Alvaro, R., Vaughan Dickson, V., & Vellone, E. (2019). Caregiver contribution to self-care in patients with heart failure: A qualitative descriptive study. The Journal of Cardiovascular Nursing, 34(2), E28–E35. https://doi.org/10.1097/JCN.0000000000000560

Hounsgaard, L., Pedersen, B., & Wagner, L. (2011). The daily living for informal caregivers with a partner with Parkinson’s disease—An interview study of women’s experiences of care decisions and self-management. Journal of Nursing and Healthcare of Chronic Illness, 3(4), 504–512. https://doi.org/10.1111/j.1752-9824.2011.01129.x

Hurt, C. S., Cleanthous, S., & Newman, S. P. (2017). Further explorations of illness uncertainty: Carers’ experiences of Parkinson’s disease. Psychology & Health, 32(5), 549–566. https://doi.org/10.1080/08870446.2017.1283033

Jones, D., Rochester, L., Birleson, A., Hetherington, V., Nieuwboer, A., Willems, A. M., et al. (2008). Everyday walking with Parkinson’s disease: Understanding personal challenges and strategies. Disability and Rehabilitation, 30(16), 1213–1221.

Liao, Y. C., Wu, Y. R., Tsao, L. I., & Lin, H. R. (2013). The experiences of Taiwanese older individuals at different stages of Parkinson disease. Journal of Neuroscience Nursing, 45(6), 370–377.

Liddle, J., Beazley, G., Gustafsson, L., & Silburn, P. (2019). Mapping the experiences and needs of deep brain stimulation for people with Parkinson’s disease and their family members. Brain Impairment, 20(3), 211–225.

Lockwood, C., Munn, Z., & Porritt, K. (2015). Qualitative research synthesis: Methodological guidance for systematic reviewers utilizing meta-aggregation. International Journal of Evidence-Based Healthcare, 13(3), 179–187. https://doi.org/10.1097/XEB.0000000000000062

Ludvigsen, M. S., Hall, E. O., Meyer, G., Fegran, L., Aagaard, H., & Uhrenfeldt, L. (2016). Using Sandelowski and Barroso’s meta-synthesis method in advancing qualitative evidence. Qualitative Health Research, 26(3), 320–329. https://doi.org/10.1177/1049732315576493

McKeown, E., Saleem, T., Magee, C., & Haddad, M. (2020). The experiences of carers looking after people with Parkinson’s disease who exhibit impulsive and compulsive behaviours: An exploratory qualitative study. Journal of Clinical Nursing, 29(23–24), 4623–4632.

McLaughlin, D., Hasson, F., Kernohan, W. G., Waldron, M., McLaughlin, M., Cochrane, B., et al. (2011). Living and coping with Parkinson’s disease: Perceptions of informal carers. Palliative Medicine, 25(2), 177–182. https://doi.org/10.1177/0269216310385604

Moriarty, H., Bunting-Perry, L., Robinson, J. P., & Bradway, C. W. (2016). The experience of women who care for spouses with Parkinson’s disease and lower urinary tract symptoms. Journal of Obstetric, Gynecologic & Neonatal Nursing, 45(5), 737–748.

Owen, C. L., Gaulton, C., Roberts, H. C., & Dennison, L. (2022). Perceptions of people with Parkinson’s and their caregivers of falling and falls-related healthcare services—A qualitative study. PLOS ONE, 17(10), e0276588.

Padovani, C., Lopes, M. C. de L., Higahashi, I. H., Pelloso, S. M., Paiano, M., & Christophoro, R. (2018). Being caregiver of people with Parkinson’s disease: Experienced situations. Revista Brasileira de Enfermagem, 71(Suppl 6), 2628–2634. https://doi.org/10.1590/0034-7167-2017-0565

Pigott, J. S., Davies, N., Chesterman, E., Read, J., Nimmons, D., Walters, K., et al. (2024). Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson’s and cognitive impairment, caregivers, and professionals. Health Expectations, 27(1), e13950.

Prado, L., Hadley, R., & Rose, D. (2020). Taking time: A mixed methods study of Parkinson’s disease caregiver participation in activities in relation to their well-being. Parkinson’s Disease, 2020, 1–18.

Renouf, S., Ffytche, D., Pinto, R., Murray, J., & Lawrence, V. (2018). Visual hallucinations in dementia and Parkinson’s disease: A qualitative exploration of patient and caregiver experiences. International Journal of Geriatric Psychiatry, 33(10), 1327–1334.

Riegel, B., Jaarsma, T., & Strömberg, A. (2012). A middle-range theory of self-care of chronic illness. ANS: Advances in Nursing Science, 35(3), 194–204. https://doi.org/10.1097/ANS.0b013e318261b1ba

Rippon, D., Hand, A., Dismore, L., & Caiazza, R. (2023). The impact of the COVID-19 pandemic on informal caregivers of people with Parkinson’s disease residing in the UK: A qualitative study. Journal of Geriatric Psychiatry and Neurology, 36(3), 233–245.

Seshadri, S., Norton, S. A., Stahl, T., Shah, M., Dini, M., Yarab, N., et al. (2023). Between a rock and a hard place: The challenges of caregiving during a pandemic for Parkinson’s family care partners. American Journal of Hospice and Palliative Medicine, 40(7), 784–792.

Tan, Q. Y., Roberts, H. C., Fraser, S. D. S., Amar, K., & Ibrahim, K. (2023). What are the modifiable factors of treatment burden and capacity among people with Parkinson’s disease and their caregivers? PLOS ONE, 18(3), e0283713.

Williamson, C., Simpson, J., & Murray, C. D. (2008). Caregivers’ experiences of caring for a husband with Parkinson’s disease and psychotic symptoms. Social Science & Medicine, 67(4), 583–

To cite this abstract in AMA style:

C. Tedesco, M. Petralito, R. Caruso, I. Milani, G. Pucciarelli. Caregiver Contribution to self-care in people with Parkison’s Disease: a meta-synthesis [abstract]. Mov Disord. 2025; 40 (suppl 1). https://www.mdsabstracts.org/abstract/caregiver-contribution-to-self-care-in-people-with-parkisons-disease-a-meta-synthesis/. Accessed October 5, 2025.
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