Abstract
AimExploration of the healthcare journey post-stroke is incomplete without acknowledging the crucial role of family caregivers. With limited literature documenting the role of caregivers in the healthcare journey post-stroke, we aimed to describe the healthcare experiences of family caregivers and stroke survivors across different caregiver identities in Singapore.MethodsWe conducted a qualitative descriptive study involving semi-structured interviews with transcripts analysed using thematic analysis. 26 stroke survivors and 35 family caregivers purposively sampled from multiple settings.ResultsFindings were summarized into seeking care and experience of healthcare encounters. Seeking care comprised of the following themes: factors influencing seeking care, decision to seek care and role of caregiver in seeking care. Experience of healthcare encounters comprised of the following themes: service around the patient, service with care and role of caregiver in healthcare encounters.ConclusionMulti-dimensional role of caregivers in healthcare experience emerged as a major finding. Unique to our Asian context, as per the participants’ accounts, family caregivers seemed to be central in healthcare decision-making for stroke survivors, with adult-child caregivers commonly reported being engaged in collaborative decision-making. While spousal caregivers preferred a relational healthcare experience, adult-child caregivers preferred a transactional one. Practical implications include equipping caregivers with skillset to make healthcare decisions, provision of supportive decision-making environment for caregivers and reinforcing communication aspects in the medical, nursing and allied healthcare curriculum to improve healthcare experience.
Highlights
Exploration of the healthcare journey post-stroke is incomplete without acknowledging the crucial role of family caregivers in providing unfading support and care for their loved ones
We summarized our findings of healthcare experience post-stroke across two categories: seeking care and experience of healthcare encounters
With the aim to describe the healthcare experiences of family caregivers and stroke survivors across different caregiver identities, we highlighted the multi-dimensional role of caregivers in the post-stroke healthcare experience
Summary
Exploration of the healthcare journey post-stroke is incomplete without acknowledging the crucial role of family caregivers in providing unfading support and care for their loved ones. Tyagi et al BMC Neurol (2021) 21:429 impairments, with up to 74 % requiring someone, often a family member, to aid with activities of daily living (ADL) [1], and more than 50 % requiring full assistance in some instrumental activities of daily living (IADL) domains [2] These multidimensional needs post-stroke necessitate the presence of a partner accompanying the stroke survivor on a post-stroke recovery trajectory. Known as informal caregivers, have been previously defined as “relatives, partners, friends, or neighbors who provide help because of a personal relationship and who provide personal and medically oriented care” [4]. They are unpaid and often without any formal training [4].
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