Support system diversity among family caregivers of stroke survivors: a qualitative study exploring Asian perspectives

Abstract

Background Caregiving is a global phenomenon which is bound to increase in tandem with the aging population worldwide. Stroke is a condition common in older people that requires complex caregiving necessitating provision of adequate support to the caregivers. Past literature consists of limited accounts of types and organization of support arrangements needed by different caregivers. We aimed to describe the support system of caregivers of stroke survivors in Singapore, highlighting differences across the different caregiver identities (i.e. spouse, adult-child, etc.). Methods We conducted a qualitative descriptive study in the community setting involving 61 purposively sampled and recruited stroke survivors and caregivers. Semi-structured interviews were conducted, and transcripts were analysed using thematic analysis. Results Our findings were summarized across the following 4 themes: 1) cultural influence and caregiving; 2) caregiver support system with the following sub-themes: 2.1) dyadic caregiver support type, 2.2) extended caregiver support type, 2.3.) distributed caregiver support type and 2.4) empowering caregiver support type; 3) breaks in care of stroke survivor and 4) complex relationship dynamics. We operationalized the caregiver support system as comprising of type, people and activities that enable the caregiver to participate in caregiving activities sustainably. While spouse caregivers preferred dyadic and extended support systems positioning themselves in a more central caregiving role, adult-child caregivers preferred distributed support system involving family members with paid caregivers playing a more central role. Conclusions Our findings highlight caregiver identity as a surrogate for the differences in the caregiver support systems. Practical implications include imparting relationship-building skills to the stroke survivor-caregiver dyads to sustain dyadic support system and educating clinicians to include differences in caregiving arrangements of stroke survivors in practising family-centred care.

Care dependency in older stroke patients with comorbidities: a latent profile analysis

“…Family members are the most important caregivers of stroke patients (Tyagi et al, 2021). In our study, we counted the number 10.3389/fnagi.2024.1366380 of caregiver roles in three categories: spouse, adult children, and other relatives.…”

“…The reasons for this may be two fold. On the one hand, for patients with severe stroke and concurrent mobility impairment, cognitive impairment and other neurological deficits, being an adult child shows a more active role in monitoring changes in the patient's condition, improving communication with the health care team and helping the patient in making medical decisions during the early stages of the illness (van Ryn et al, 2011;Shin et al, 2013;Isenberg et al, 2018;Fenton et al, 2022).A study in Singapore noted that by adult children taking turns in care, pooling resources, and distributive support (determining which part of care each person is competent in), patients avoid to some extent the influence brought about by medical decision-making activities and become less dependent (Tyagi et al, 2021); on the other hand, it has been noted that the cultural context influences the tendency for children to care for their parents, which has an impact on the children's own lives and work. In this regard, parents feel guilty and try to reduce their needs to ease the burden of their children (Liu et al, 2020b;Liu, 2021;Nursiswati et al, 2022), resulting in an apparent "low dependency".…”

Coping style and benefit finding among informal caregivers of patients with lung cancer: a moderated mediation model of co-caregivers and caregiving capability

“…Caregiving capability, a crucial indicator for satisfying patients' psychosocial needs (Kosberg & Cairl, 1986), seeking social support, and performing caregiving tasks, plays a significant role in predicting BF. Research has indicated that caregivers with high caregiving capability also have a clear advantage in handling their own and patients' emotional coping styles (Tyagi et al, 2021). The higher the caregiver's capability, the more conducive it is to convey positive treatment beliefs to patients during the caregiving process and enhance positive experiences.…”

Influence of psychological responses of caregiving on the perceived health of family caregivers to acute stroke survivors

“…[ 1 , 2 ] With current medical advancements, family caregivers are expected to provide continuous care to stroke-afflicted family members who have exhibited complex stroke symptoms, increased functional dependency, cognitive impairments, and behavioral problems for years following the onset of the condition. [ 3 , 4 ] Caregiving is a public health issue [ 5 ] as family caregivers are the bedrock of long-term home care given their provision of unpaid care (economically valued at an estimated US$ 470 billion) to disabled family members. [ 6 , 7 ] However, studies suggest that caregiving-associated stressors may be detrimental to the psychosocial well-being of caregivers, thereby influencing the perceived health of caregivers.…”