Challenges in Accessing Community-Based Rehabilitation and Long-Term Care for Older Adult Stroke Survivors and Their Caregivers: A Qualitative Study

Abstract

Sining Zeng,1,2,* Min Wu,1,* Ling Xu,1 Zining Guo,1 Shufan Chen,1 Keyu Ling,1 Haihan Li,1 Xiaoli Yu,1 Xiaoping Zhu1 1Department of Nursing, Shanghai Tenth People’s Hospital, Tongji University School of Medicine, Shanghai, 200072, People’s Republic of China; 2School of Nursing, Soochow University, Suzhou, 215031, People’s Republic of China*These authors contributed equally to this workCorrespondence: Xiaoping Zhu, Department of Nursing, Shanghai Tenth People’s Hospital, Tongji University School of Medicine, Shanghai, 200072, People’s Republic of China, Tel [phone], Fax [phone], Email [email protected] and Objectives: While extensive research has examined the rehabilitation challenges faced by stroke survivors, there is limited literature addressing the difficulties encountered by older adult stroke survivors and their caregivers in accessing rehabilitation and long-term care within the Chinese community. This study aimed to investigate the specific challenges related to access, quality, and coordination of rehabilitation and long-term care experienced by older adult stroke survivors and their caregivers within the Chinese community.Methods: A qualitative phenomenological design was employed to explore the lived experiences of stroke survivors and their caregivers within the Chinese community. A purposive sampling method was used to recruit participants from June to August 2023. Participants engaged in face-to-face semi-structured interviews. The data were analyzed using an inductive thematic analysis approach to identify and understand key themes and sub-themes.Results: The study involved 38 participants, consisting of 21 older adult stroke survivors (13 males, 8 females) and 17 family caregivers (7 males, 10 females), recruited from five Chinese community health service stations. The analysis identified four distinct themes and 11 sub-themes that encapsulated the challenges faced by participants. These themes include (1) Difficulties in accessing medical services (insufficient medical resources, lack of rehabilitation resources, and time-consuming processes), (2) Challenges in daily life (inconvenience in daily mobility, inadequate financial support, and difficulties in applying for home care services), (3) Psychosocial stress (loneliness, powerlessness, and worry about burdening others), (4) Insufficient information (lack of awareness of available community services, and limited public health education activities).Conclusion: Older adult stroke survivors and their caregivers in Chinese communities face significant challenges. To improve their well-being and quality of life, it is crucial to address these challenges through enhanced access to healthcare, better support for daily living, and more effective information dissemination. Meeting these needs requires a coordinated effort from healthcare providers, community stakeholders, and policymakers to develop and implement effective, long-term care solutions.Keywords: stroke, survivors, caregivers, community, qualitative research

Keywords

• stroke
• survivors
• caregivers
• community
• qualitative research