Experiences of receiving long-term care services post stroke from the perspectives of indigenous and non-indigenous people in the Taiwanese community: a focused ethnographic study

Abstract

Background: The Long Term Care (LTC) policy in Taiwan was developed in response to Taiwan’s ageing society and is aimed at addressing the increasing demand for healthcare services (Ministry of Health and Welfare, 2018). Stroke is often seen as an age-related disease. Medical advances have enabled an increase in the number of stroke survivors, and have consequently increased the population living in communities with long-term health conditions or residual complications post-stroke (Hsiao, 2010; Donkor, 2018). In Taiwanese society, adult children generally take care of their ageing parents. This generational relation bond in families stems from filial piety and a familial belief system that forms the backbone of the family caregiving system. Demographic changes in combination with more women joining the paid workforce have impacted negatively on the previously readily available but unpaid care work within the family, thus raising the demand and need for the provision of LTC services. The Taiwanese community comprises different ethnic groups, and insufficient attention has been paid to the specific healthcare needs of people from different backgrounds. This ethnography explores how stroke survivors and their family caregivers utilised LTC services from the perspectives of indigenous and non-indigenous participants. Methodology and methods: A focused ethnographic approach was employed for this study. Data collection included non-participant observation of LTC service delivery and involved semi-structured interviews with 12 dyads of stroke survivors and their family caregivers. The research participants were from indigenous, urban-based indigenous and non-indigenous communities. Each ethnic group consisted of four dyads. Following transcription, the data were transferred to NVivo 12 for analysis. The data analysis reflected an inductive-abductive approach, drawing on Bury’s (1982) biographical disruption, Glaser and Strauss’ (2011) status passage theory, and in its later stages, Giddens’ (1984) structuration theory. Findings: The findings show that post-stroke life was underpinned by the family caregiving system and LTC system in Taiwanese communities. Each dyad’s needs and expectations for their post-stroke lives informed their post-stroke recovery trajectory. The extent to which LTC coordinated the individual needs within the situated contexts of both the family and community shaped the nature and quality of recovery and this reflected the individual’s recovery trajectory. However, the coordination of care resources faced obstacles that resulted from social determinants. The predominant socioenvironments were the key factors that inhibited healthcare access. Urbanisation was a fundamental reason for the urbanised indigenous participants’ slower movement along the recovery trajectory. They seemed to be invisible in the LTC system, and their healthcare was not as well supported. They had lost their ethnic connection to the native tribes and administrative identity in the LTC system concurrently, as they detached physically from the tribal communities and sociopsychologically from the urban communities. The geographical barrier was an unconquerable distance preventing healthcare access for the indigenous people located in mountainous areas, as the need for transportation increased and impeded the accessibility of healthcare facilities. The LTC workforce served as an agency in overcoming some of these barriers and optimising the system organisation. The agency of the LTC workforce functioned in different patterns. In the non-indigenous context, the LTC workforce assumed a supplementary role of collaborating with other available resources in the community. Their agency was expected to be more skilful and independently applied in the mountainous indigenous context. In the urban-based context, this agency was enacted through information and resource linking. Conclusions: The conceptual model illustrated how structuration theory (Giddens, 1984), biographical disruption (Bury, 1982) and status passage theory (Glaser and Strauss, 2011) could help to interpret the world of people recovering from a stroke and engaging with the LTC system in society. It identified socio-environments as the key barriers and the workforce agency as the facilitator for LTC implementation. Therefore, LTC policy should not aim to achieve equal healthcare access; instead, it needs to draw support from flexible, adapted strategies in order to address healthcare equity for individuals.