Abstract
Background: Stroke is considered the most common cause of long-term and complex disability, often resulting in a combination of sensory, motor, and cognitive deficits. Stroke survivors return to live in the community, relying on informal carers such as family and friends to meet their needs of care and support. Carers play an important role in the recovery of stroke survivors from inpatient rehabilitation to returning home and integrating back into the community. The provision of informal care to stroke survivors within the community can be challenging and can be associated with significant emotional consequences, loss of relationships with family and friends, withdrawal from social activities and poor quality of life. Given these complexities along with the abruptness of stroke presentation and the subsequent stress of suddenly supporting a person with stroke, interventions that enhance carers’ ability to cope with and build resilience are of considerable importance.
Aim: The aim of the thesis was to develop a psychosocial intervention to improve resilience of informal carers of stroke survivors.
Methods: To address the aim, the adapted Medical Research Council (aMRC) Framework for developing health interventions was used. Initially, a systematic review of literature was undertaken to identify and synthesise the evidence of psychosocial interventions to build resilience of informal carers of stroke survivors. A qualitative descriptive study then explored the understanding of issues carers condsidered affected their resilience and to explore their perspective of the best type (for example, coping skills, counselling, problem solving, social support) and format of the intervention. Using the findings of the systematic review, the qualitative study and a series of consultations with resilience experts and psychologists, an internationally recognised strengths-based resilience (SBR) intervention was adopted and modified for use. The feasibility of the SBR intervention was then evaluated using the randomised controlled trial (RCT) design comparing SBR with usual care. Individual interviews with participants in the experimental group explored the benefits and acceptability of the intervention and seek suggestions for improvement from the participants’ perspectives. Quantitative measures were used to compare groups.
Results: Findings from the systematic review showed that psychosocial interventions comprising information provision, problem-solving skills and psychoeducation may be beneficial to improve resilience of carers. However, due to the heterogeneity of the interventions and outcome measures reported across the included studies, no particular intervention could be definitively supported. The qualitative interview study with carers of stroke survivors (n = 19) identified carer psychosocial challenges (such as living with ambiguous loss, adapting to new reality, coping with uncertain future, and diminishment of self), stroke severity, financial stress and carer exclusion in care planning as significant factors affecting carer resilience. Carers suggested an intervention comprising training in coping skills, optimal ways to communicate with stroke survivor, and connection with experienced carers. Most supported a monthly group delivery of the intervention. The following feasibility study (n = 27) showed that the strengths-based resilience intervention was acceptable and potentially beneficial to support resilience of carers of stroke survivors. The intervention appeared more suitable to carers two years post stroke and called for additional support for new carers. The recruitment for the feasibility study was limited in that twenty-four European (Pākehā), two Māori female spouses and one male carer were recruited. More work is required in future trials to broaden the diversity of recruitment.
Conclusions: The chosen psychosocial intervention for resilience of carers was found to be potentially beneficial and acceptable, and worthy of further investigation. It is suggested that interventions focusing on carers’ resilience should be integrated into the stroke rehabilitation process to ensure the sustainability of the care provided to the stroke survivor. The next stage in the research journey will be to determine the effectiveness of the SBR intervention in a fully powered culturally adapted RCT.