Abstract
This study aimed to determine the perceptions and experiences of elderly individuals with Parkinson’s disease and formal caregivers regarding spiritual care. A qualitative study was conducted using a descriptive phenomenological design. Fifteen formal caregivers and eight elderly individuals with Parkinson's disease from two nursing homes in Türkiye participated in the study. Data were collected through face-to-face individual interviews, and thematic analysis was employed to examine the data. Two themes were obtained from the data analysis: (I) spiritual care in nursing homes and (II) living with Parkinson's disease in nursing homes. Findings showed that living in a nursing home with Parkinson's disease affects the spiritual dimensions of elderly individuals and increases their spiritual needs. Additionally, it was found that although formal caregivers implemented a diverse range of practices to address the spiritual care needs of individuals residing in a nursing home, they did not offer any specific spiritual care practices for individuals with Parkinson's disease. Based on our findings, it is considered necessary to have spiritual counselors and formal caregivers with expertise in Parkinson's disease in nursing homes.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Akyıl, R. Ç., Adıbelli, D., Erdem, N., Kırağ, N., Aktaş, B., & Karadakovan, A. (2018). Huzurevinde ve evde kalan yaşlılarda yalnızlık ve algılanan sosyal destek ile mutluluk düzeyleri arasındaki ilişki. Anadolu Hemşirelik Ve Sağlık Bilimleri Dergisi, 21(1), 33–41.
Arshinoff, R., Roldan, C., & Balboni, T. (2023). Spirituality and spiritual distress in neurologic illness. Handbook of Clinical Neurology, 191, 221–234. https://doi.org/10.1016/B978-0-12-824535-4.00004-5
Ascherio, A., & Schwarzschild, M. A. (2016). The epidemiology of Parkinson’s disease: Risk factors and prevention. The Lancet Neurology, 15(12), 1257–1272. https://doi.org/10.1016/S1474-4422(16)30230-7
Berman, A., Snyder, S., & Frandsen, G. (2021). Spirituality. In A. Berman, S. Snyder, & G. Frandsen (Eds.), Kozier & Erb’s Fundamentals of Nursing: Concepts, Process, and Practice (pp. 1047–1064). Pearson Education.
Bingham, V., & Habermann, B. (2006). The influence of spirituality on family management of Parkinson’s disease. The Journal of Neuroscience Nursing, 38(6), 422–427. https://doi.org/10.1097/01376517-200612000-00006
Boersma, I., Jones, J., Carter, J., Bekelman, D., Miyasaki, J., Kutner, J., & Kluger, B. (2016). Parkinson disease patients’ perspectives on palliative care needs: What are they telling us? Neurology Clinical Practice, 6(3), 209–219. https://doi.org/10.1212/CPJ.0000000000000233
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
Bužgová, R., & Kozáková, R. (2019). Informing patients with progressive neurological disease of their health status, and their adaptation to the disease. BMC Neurology, 19(1), 250. https://doi.org/10.1186/s12883-019-1488-y
Chen, Y., Zhang, R., Lou, Y., Li, W., & Yang, H. (2023). Facilitators and barriers to the delivery of palliative care to patients with Parkinson’s disease: A qualitative study of the perceptions and experiences of stakeholders using the socio-ecological model. BMC Health Services Research, 23(1), 215. https://doi.org/10.1186/s12913-023-09203-2
Chuang, Y. H., Abbey, J. A., Yeh, Y. C., Tseng, I. J., & Liu, M. F. (2015). As they see it: A qualitative study of how older residents in nursing homes perceive their care needs. Collegian (royal College of Nursing, Australia), 22(1), 43–51. https://doi.org/10.1016/j.colegn.2013.11.001
Civil, M. (2018). Parkinson hastalarında yaşam kalitesi ve hemşirelik bakımı. Sağlık Ve Toplum, 28(2), 9–15.
Drageset, J., Dysvik, E., Espehaug, B., Natvig, G. K., & Furnes, B. (2015). Suffering and mental health among older people living in nursing homes-a mixed-methods study. PeerJ, 3, e1120. https://doi.org/10.7717/peerj.1120
Ellis, J., & Lyord-Williams, M. (2012). Palliative care. In M. Cobb, C. M. Puchalski, & B. Rumbold (Eds.), Oxford Textbook of Spirituality in Healthcare (p. 257). Oxford University Press.
Fidder, H., Jaski, J. J., Elbertse, E., van Loon, A. M., Monnier, A. A., de Boer, M. E., & de Groot, A. J. (2022). Parkinson rehabilitation in nursing homes: A qualitative exploration of the experiences of patients and caregivers. European Geriatric Medicine, 13(5), 1197–1210. https://doi.org/10.1007/s41999-022-00647-z
Fox, S., Cashell, A., Kernohan, W. G., Lynch, M., McGlade, C., O’Brien, T., O’Sullivan, S. S., & Timmons, S. (2016). Interviews with Irish healthcare workers from different disciplines about palliative care for people with Parkinson’s disease: A definite role but uncertainty around terminology and timing. BMC Palliative Care, 15, 15. https://doi.org/10.1186/s12904-016-0087-6
Hermanns, M. (2013). The invisible and visible stigmatization of Parkinson’s disease. Journal of the American Association of Nurse Practitioners, 25(10), 563–566. https://doi.org/10.1111/1745-7599.12008
Hermanns, M., Deal, B., & Haas, B. (2012). Biopsychosocial and spiritual aspects of Parkinson disease: An integrative review. The Journal of Neuroscience Nursing, 44(4), 194–205. https://doi.org/10.1097/JNN.0b013e3182527593
Hughes, J. (2004). Rehabilitation, occupational therapy and elderly patients with Parkinson’s disease. In J. Meara & W. C. Koller (Eds.), Parkinson’s Disease and Parkinsonism in the Elderly (p. 217). Cambridge University Press.
Hvidt, N. C., Nielsen, K. T., Kørup, A. K., Prinds, C., Hansen, D. G., Viftrup, D. T., Assing Hvidt, E., Hammer, E. R., Falkø, E., Locher, F., Boelsbjerg, H. B., Wallin, J. A., Thomsen, K. F., Schrøder, K., Moestrup, L., Nissen, R. D., Stewart-Ferrer, S., Stripp, T. K., Steenfeldt, V. Ø., … Wæhrens, E. E. (2020). What is spiritual care? Professional perspectives on the concept of spiritual care identified through group concept mapping. British Medical Journal Open, 10(12), e042142. https://doi.org/10.1136/bmjopen-2020-042142
Nursing Home Abuse Justice. (2023). Why is managing mental health in a nursing home important? Available online: https://www.nursinghomeabuse.org/resources/nursing-home-mental-health/#:~:text=Older%20adults%20can%20often%20feel,staff%20without%20their%20family%20knowing. Accessed 14 August 2023.
Kalkım, A. (2021). Hemşirelikte manevi bakım. In M. K. Kaşıkçı & E. Akın (Eds.), Temel Hemşirelik Esaslar, Kavramlar, Ilkeler, Uygulamalar (p. 265). İstanbul Tıp Kitapevleri.
Kluger, B. M., Shattuck, J., Berk, J., Sebring, K., Jones, W., Brunetti, F., Fairmont, I., Bowles, D. W., Sillau, S., & Bekelman, D. B. (2019). Defining palliative care needs in Parkinson’s disease. Movement Disorders Clinical Practice, 6(2), 125–131. https://doi.org/10.1002/mdc3.12702
Kwok, J. Y. Y., Choi, E. P. H., Chau, P. H., Wong, J. Y. H., Fong, D. Y. T., & Auyeung, M. (2020). Effects of spiritual resilience on psychological distress and health-related quality of life in Chinese people with Parkinson’s disease. Quality of Life Research, 29(11), 3065–3073. https://doi.org/10.1007/s11136-020-02562-x
Lennaerts, H., Steppe, M., Munneke, M., Meinders, M. J., van der Steen, J. T., Van den Brand, M., van Amelsvoort, D., Vissers, K., Bloem, B. R., & Groot, M. (2019). Palliative care for persons with Parkinson’s disease: A qualitative study on the experiences of health care professionals. BMC Palliative Care, 18(1), 53. https://doi.org/10.1186/s12904-019-0441-6
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. SAGE Publications.
Lintel, H., Corpuz, T., Paracha, S. U., & Grossberg, G. T. (2021). Mood disorders and anxiety in Parkinson’s disease: Current concepts. Journal of Geriatric Psychiatry and Neurology, 34(4), 280–288. https://doi.org/10.1177/08919887211018267
Malterud, K., Siersma, V. D., & Guassora, A. D. (2016). Sample size in qualitative interview studies: Guided by information power. Qualitative Health Research, 26(13), 1753–1760. https://doi.org/10.1177/1049732315617444
Morgan, E., & Moran, M. (2008). The Parkinson’s disease nurse specialist. In J. Playfer & J. Hindle (Eds.), Parkinson’s Disease in the Older Patient (p. 316). Taylor & Francis Group.
Mulligan, A. (2021). Nursing care or scare? The psychological effects of nursing homes on the elderly. Available online: https://www.psychreg.org/psychological-effects-nursing-homes-elderly/. Accessed 11 August 2023.
O’Brien, M. R., Kinloch, K., Groves, K. E., & Jack, B. A. (2019). Meeting patients’ spiritual needs during end-of-life care: A qualitative study of nurses’ and healthcare professionals’ perceptions of spiritual care training. Journal of Clinical Nursing, 28(1–2), 182–189. https://doi.org/10.1111/jocn.14648
Oliver, D., & Veronese, S. (2020). Specialist palliative care for Parkinson’s disease. Annals of Palliative Medicine, 9(Suppl 1), S52–S62. https://doi.org/10.21037/apm.2019.12.01
Paal, P., & Lorenzl, S. (2020). Patients with Parkinson’s disease need spiritual care. Annals of Palliative Medicine, 9(2), 144–148. https://doi.org/10.21037/apm.2019.11.24
Parkinson’s Europe. (2023). Available online: https://www.parkinsonseurope.org/living-well/wellbeing/personal-health/emotional-and-spiritual-well-being/. Accessed 11 August 2023.
Prizer, L. P., Kluger, B. M., Sillau, S., Katz, M., Galifianakis, N., & Miyasaki, J. M. (2020). Correlates of spiritual wellbeing in persons living with Parkinson disease. Annals of Palliative Medicine, 9(Suppl 1), S16–S23. https://doi.org/10.21037/apm.2019.09.13
Ramezani, M., Ahmadi, F., Mohammadi, E., & Kazemnejad, A. (2014). Spiritual care in nursing: A concept analysis. International Nursing Review, 61(2), 211–219. https://doi.org/10.1111/inr.12099
Reich, S. G., & Savitt, J. M. (2019). Parkinson’s disease. The Medical Clinics of North America, 103(2), 337–350. https://doi.org/10.1016/j.mcna.2018.10.014
Reynolds, D. (2017). Spirituality as a coping mechanism for individuals with Parkinson’s disease. Journal of Christian Nursing, 34(3), 190–194. https://doi.org/10.1097/CNJ.0000000000000392
Risk, J. L. (2013). Building a new life: A chaplain’s theory based case study of chronic illness. Journal of Health Care Chaplaincy, 19(3), 81–98. https://doi.org/10.1080/08854726.2013.806117
Rod, N. H., Bordelon, Y., Thompson, A., Marcotte, E., & Ritz, B. (2013). Major life events and development of major depression in Parkinson’s disease patients. European Journal of Neurology, 20(4), 663–670. https://doi.org/10.1111/ene.12019
Rowe, M. M., & Allen, R. G. (2004). Spirituality as a means of coping with chronic illness. American Journal of Health Studies, 19(1), 62–66.
Stanley-Hermanns, M., & Engebretson, J. (2010). Sailing stormy seas: The illness experience of persons with Parkinson’s disease. The Qualitative Report, 15(2), 340–369. https://doi.org/10.46743/2160-3715/2010.1155
Taş, L., Cebecioğlu, G., & Korkmaz, A. H. (2023). Sakinlerin gözünden huzurevi yaşamını anlamak. Selçuk Üniversitesi Edebiyat Fakültesi Dergisi, 49, 211–234. https://doi.org/10.21497/sefad.1313306
World Health Organization. (WHO) (2023). Parkinson disease. Available online: https://www.who.int/news-room/fact-sheets/detail/parkinson-disease. Accessed 10 August 2023.
Acknowledgements
We would like to extend our gratitude to all participants.
Funding
The authors declare that no funds, grants, or other support were received during the preparation of this manuscript.
Author information
Authors and Affiliations
Contributions
All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by AK and MG. The first draft of the manuscript was written by AK, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
Corresponding author
Ethics declarations
Conflict of interest
The authors have no relevant financial or non-financial interests to disclose.
Ethical Approval
This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Non-Invasive Clinical Research Ethics Committee of Amasya University (02 June 2023/ No: 2023/78).
Consent to Participate
Written and verbal informed consent was obtained from all individual participants included in the study.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Kurtgöz, A., Genç, M. Spiritual Care Perspectives of Elderly Individuals with Parkinson's Disease and Formal Caregivers: A Qualitative Study in Turkish Nursing Homes. J Relig Health 63, 2106–2124 (2024). https://doi.org/10.1007/s10943-023-01963-9
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10943-023-01963-9