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Creating a Caregiver Benefit Finding Scale of Family Caregivers of Stroke Survivors: Development and Psychometric Evaluation.

ABSTRACT: In recent years, increased attention has been paid to the benefit finding of family caregivers due to the important role they play. Although some instruments measure benefit finding of caregivers, they do not comprehensively address it in terms specific to the family caregivers of stroke survivors, who require long-term, consistent care. This study is the first effort to develop a comprehensive Caregiver Benefit Finding Scale for the family caregivers of stroke survivors in a Chinese cultural setting. First, 50 items were extracted from a systematic literature review, and a semi-structured interview was conducted with 20 stroke family caregivers to develop the preliminary version of the scale (Version 1). Second, Delphi procedures with 20 experts were used to revise the first version and create Version 2 (37 items). Another six experts were recruited for content validation. Item content validity index (I-CVI) values ranged from 0.83 to 1.00, and the value of the scale CVI was 0.97. Third, 309 family caregivers completed the Version 2 questionnaire and the Chinese version of the Positive Aspects of Caregiving. Two weeks later, 35 family caregivers once again completed the questionnaires. An exploratory factor analysis produced four components (personal growth, health promotion, family growth, and self-sublimation) and 26 items for Version 3 (the cumulative proportion variance was 74.14%). Subsequently, 311 family caregivers completed Version 3. A confirmatory factor analysis confirmed the structure. The goodness of fit index (GFI) = 0.921, adjusted GFI = 0.901, normal fit index = 0.951, incremental fit index = 0.990, comparative FI = 0.990, and the root mean square error of approximation = 0.02 were within the acceptable range. Criterion-related validity was equal to 0.803. The model-based internal consistency index was 0.845 and the values of the Cronbach'α coefficient of the four dimensions were 0.885-0.953. The split-half reliability was 0.92, and the test-retest reliability was 0.994. These findings provide preliminary evidence of the validity and reliability of the Caregiver Benefit Finding Scale. The scale can help researchers and clinicians to achieve a more comprehensive understanding of stroke family caregivers' positive experience. This understanding is necessary for future efforts to address issues in benefit finding by targeting the underlying mechanism and intervention.

SUBMITTER: Mei YX

PROVIDER: S-EPMC7403500 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:AimTo explore the experiences pertaining to long-term care services from the perspectives of dyads of stroke survivors and their family caregivers in indigenous and non-indigenous communities.BackgroundStroke occurrence is a life-changing event associated with quality of life for stroke survivors and their families, especially those who provide primary support. Indigenous people are more likely to experience a stroke at a younger age and have a higher likelihood of hospitalisation and death due to health disparities. Few studies have investigated family dyads or indigenous populations to understand their experiences of coping with changed body-self and to contextualise their reintegration into communities post-stroke.MethodsEthnographic fieldwork over nine months in 2018-2019 with indigenous, urban-based, and non-indigenous populations, resulting in 48 observations and 24 interviews with 12 dyads in three geo-administrative communities.FindingsThe post-stroke recovery trajectory is illuminated, delineating the dyads' life transitions from biographical disruption to biographical continuation. The trajectory is shaped by seven states involving four mindsets and three status passages. The four mindsets are sense of loss and worry, sense of interdependence, sense of independence, and wellbeing state. The status passages identified in this study are acceptance, alteration, and identification. A community-based and family-centred long-term care system, aligning with medical healthcare and community resources, underpinned each dyad's biographical continuation by: (1) providing rehabilitation that afforded time and space for recovery adaptation; (2) acknowledging the individuality of family caregivers and helping to alleviate their multitasking; and (3) reintegrating stroke survivors into their communities. Key to determining the quality of recovery for the indigenous participants was their reintegration into their native community and regaining of identity. Therefore, integrating post-stroke care into various care contexts and incorporating indigenous-specific needs into policymaking can support dyads in adapting to their communities.

Project description:BackgroundStroke is one of the leading causes of disability in China and worldwide, affecting the health and well-being of both stroke survivors and their family caregivers (i.e. stroke dyads). Dyadic interventions targeting both as active participants can be beneficial for the dyads' health and well-being. Psychoeducation is a potentially acceptable approach to developing participants' knowledge about their disease management to promote their recovery. This study aims to explore the feasibility, acceptability, and preliminary effects of a family-focused dyadic psychoeducational intervention for stroke dyads.MethodsThis study was a single-blinded, parallel-group randomised controlled trial. Totally, a convenience sample of 40 stroke dyads was recruited. The intervention included three in-hospital face-to-face education sessions and four weekly post-discharge follow-up telephone counselling sessions. Feasibility was assessed by the rates of recruitment, attritions, and adherence to the intervention. Acceptability was evaluated via semi-structured qualitative interviews. Preliminary intervention effects were evaluated on primary (survivors' functioning and caregivers' burden) and secondary (caregivers' competence and dyads' coping, depressive and anxiety symptoms, family functioning, and dyadic relationship) outcomes.ResultsIntervention feasibility was established with satisfactory recruitment (76.9%), attrition (10%), and intervention completion (75%) rates. Qualitative interviews suggested that the intervention was acceptable and useful to stroke dyads. The intervention effects on survivors' functioning were significant in the memory and thinking (F = 8.39, p = 0.022, η = 0.18) and mobility (F = 5.37, p = 0.026, η = 0.12) domains, but not significant on their overall functioning (F = 2.39, p = 0.131). Caregiver burden in the intervention group was significantly greater reduced at post-test than the control group, with a large effect size (F = 7.55, p = 0.013, η = 0.28). For secondary outcomes, this intervention suggested a significant effect on caregivers' competence (F = 5.20, p = 0.034, η = 0.22), but non-significant effects on other outcomes.ConclusionsThe family-focused dyadic psychoeducation programme was feasible and acceptable for stroke dyads and showed preliminary effects for stroke dyads. These findings support a larger-scale controlled trial to further examine its intervention effects over a longer-term follow-up.Trial registrationThis study was retrospectively registered as a randomised controlled trial in the ISRCTN Registry. Registration Date: October 10, 2022.Registration numberISRCTN18158500.

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Creating a Caregiver Benefit Finding Scale of Family Caregivers of Stroke Survivors: Development and Psychometric Evaluation.

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