Yiping Chen1,2, Wentao Zhou3,4, Liyuan Hou1,2, Xianhui Zhang1,2, Qiaohong Wang1,5, Jing Gu1,2, Ru Zhang1,2, Hui Yang6,7. 1. School of Nursing, Shanxi Medical University, No.56, Xinjian South Road, Yingze District, Taiyuan, Shanxi, China. 2. Department of Neurology, First Hospital of Shanxi Medical University, Taiyuan, Shanxi, China. 3. Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore. 4. National Neuroscience Institute, Singapore, Singapore. 5. Department of Nursing, First Hospital of Shanxi Medical University, Taiyuan, Shanxi, China. 6. School of Nursing, Shanxi Medical University, No.56, Xinjian South Road, Yingze District, Taiyuan, Shanxi, China. d17835154117@126.com. 7. Department of Nursing, First Hospital of Shanxi Medical University, Taiyuan, Shanxi, China. d17835154117@126.com.
Abstract
BACKGROUND AND AIMS: Parkinson's disease patients (PwPD) rely heavily on their family caregivers. However, there remains uncertainty regarding the subjective experience of the family caregivers of PwPD. This study aims to provide an in-depth summary of the current knowledge about the subjective experiences of family caregivers caring for PwPD, to understand the factors that influence this experience and to provide the evidence for healthcare services. METHODS: We conducted a systematic review and meta-ethnography using Noblit and Hare's approach. The search strategy used MeSH terms in combination with free-text searching of 10 databases (from their inception until July 2021). Titles and abstracts were reviewed by two reviewers and, for the studies that met the eligibility criteria, full-text articles were obtained. The Critical Appraisal Skills Program (CASP) checklist was employed to assess the quality of studies. RESULTS: A total of 3318 studies were screened and 29 qualitative studies were included in this review. These studies recorded the experience of 399 participants across 12 countries, most were females. Five themes emerged: (a) feelings related to PD; (b) challenges to family life; (c) external challenges; (d) adjustment and adaptation; (e) external support. We propose a new conceptual model that highlights that the experiences of caregivers for PwPD are dynamic and influenced by a variety of internal and external factors. CONCLUSION: Our findings illustrate the complex and dynamic experiences of family caregivers for PwPD. It is necessary to explore how the influencing factors can be modified to improve the lived experience of family caregivers.
BACKGROUND AND AIMS: Parkinson's disease patients (PwPD) rely heavily on their family caregivers. However, there remains uncertainty regarding the subjective experience of the family caregivers of PwPD. This study aims to provide an in-depth summary of the current knowledge about the subjective experiences of family caregivers caring for PwPD, to understand the factors that influence this experience and to provide the evidence for healthcare services. METHODS: We conducted a systematic review and meta-ethnography using Noblit and Hare's approach. The search strategy used MeSH terms in combination with free-text searching of 10 databases (from their inception until July 2021). Titles and abstracts were reviewed by two reviewers and, for the studies that met the eligibility criteria, full-text articles were obtained. The Critical Appraisal Skills Program (CASP) checklist was employed to assess the quality of studies. RESULTS: A total of 3318 studies were screened and 29 qualitative studies were included in this review. These studies recorded the experience of 399 participants across 12 countries, most were females. Five themes emerged: (a) feelings related to PD; (b) challenges to family life; (c) external challenges; (d) adjustment and adaptation; (e) external support. We propose a new conceptual model that highlights that the experiences of caregivers for PwPD are dynamic and influenced by a variety of internal and external factors. CONCLUSION: Our findings illustrate the complex and dynamic experiences of family caregivers for PwPD. It is necessary to explore how the influencing factors can be modified to improve the lived experience of family caregivers.
Authors: Xing Yan Choo; Shen-Yang Lim; Karuthan Chinna; Yan Jing Tan; Voon Wei Yong; Jia Lun Lim; Kar Foo Lau; Jing Yi Chung; Jun Min Em; Hui Ting Tan; Jia Hwa Lim; Seng Beng Tan; Chong Tin Tan; Ai Huey Tan Journal: Neurol Sci Date: 2020-04-20 Impact factor: 3.307
Authors: Horacio Chiong-Rivero; Gery W Ryan; Charles Flippen; Yvette Bordelon; Nicholas R Szumski; Theresa A Zesiewicz; Stefanie Vassar; Beverly Weidmer; Rosa Elena García; Melissa Bradley; Barbara G Vickrey Journal: Patient Relat Outcome Meas Date: 2011-03