Development, feasibility testing, and preliminary outcomes evaluation of the 3H (head, heart, hands) intervention for supporting couples in their living and recovery post-stroke : an embedded mixed-methods study

Abstract

Background: Stroke is a chronic and disabling neurological condition that renders persons with stroke dependent on their caregivers. The family caregivers of persons with stroke experience a great burden, due to the sudden onset of a family member's disabilities resulting from stroke and the uncertain prognosis of recovery. Given family caregivers' long-term and heavy caregiving responsibilities, their needs are neglected, leading to relationship strains. To address this problem, interventions in supporting persons with stroke and their spousal caregivers to adapt the stroke situation are important and necessary. Little is known about the feasibility and effects of this type of programme on stroke couples. Aim: The study aimed to systematically develop a nurse-led intervention programme, and evaluate its feasibility and preliminary outcomes for the daily living and recovery of persons with stroke and their spousal caregivers in Singapore. Methods: The 3H (head, heart, hands) intervention was developed through a literature review and a qualitative study in Singapore, according to the MRC (Medical Research Council, 2008) framework. The feasibility and preliminary outcomes of this programme were tested using an embedded mixed-methods approach. To supplement the feasibility analysis, qualitative interviews were conducted that explored couples' experiences of participating in the 3H intervention. Acceptability was assessed by the quantitative measurements of participant recruitment, retention, and attrition rates. An evaluation of the preliminary outcomes was performed via a pre- and post-test quasi-experimental design with no control group. As a mixed-methods research reporting standard, the Collins, Onwuegbuzie & Sutton (2006) framework was utilised for this study's report. Study participants were recruited through convenience sampling at a stroke rehabilitation hospital in Singapore. According to Julious (2005), 12 participants per group are required for conducting pilot or feasibility studies. Considering a study participation refusal rate of approximately 20%, a total of 32 stroke couples was approached and recruited to participate in the study. Of these participants, seven couples were purposively selected to share their post-3H intervention experiences. After the baseline measurement (T0) of anxiety, depression, dyadic adjustment, and dyadic coping, six sessions of the 3H intervention were conducted in a rehabilitation hospital with stroke patients and their key caregivers over a period of three weeks. The activities were conducted both as face-to-face group sessions with all participants, and individual sessions for the patient and caregiver as a dyad. The post-test measurement was performed at T1 - the time when participants completed their sixth session of the 3H intervention. Following that, interpretive descriptive qualitative interviews were performed in order to collect data about their experiences to supplement the feasibility analysis. Results: The 3H intervention, developed from the literature review and qualitative study, comprised three elements: informational support, shared decision making, and practical skills training. From the embedded mixed-methods study that aimed to evaluate the feasibility and preliminary outcomes of 3H intervention, the participants found their involvement in the programme to be acceptable. A total of 64 participants (32 couples) took part in the intervention at T0. Fifty-four participants (23 spousal caregivers and 31 persons with stroke) remained and completed the intervention at T1. At the end of the study, an attrition rate of 15.6% of participants (nine spousal caregivers and one person with stroke) was evident. The qualitative results supplementing the feasibility analysis indicated that the participants were more prepared to face living with stroke as couples. They described the stroke situation as a "storm" in their lives. In the aftermath of a stroke that occurred suddenly, participants felt uncertain and worried about their future. Prior to the 3H intervention implementation, they were struggling with the stroke situation. However, their coping processes improved after taking part in the programme. The coping strategies employed by participants include, breaking the silence and engaging in conversations, cultivating a sense of support, and conveniently fulfilling their educational needs. To further strengthen the couples' transitional care support from hospital to home, an extension of the 3H intervention in the community is warranted. For the preliminary outcomes, spousal caregivers were found to have more significant benefits from the intervention than persons with stroke. In the group by time effect, they scored better in most scales of the dyadic coping inventory (DCI) after their participation in the 3H intervention, i.e., outgoing stress communication (β = -16.88, p = .009), incoming stress coping behaviour (β = -16.96, p = .008), incoming stress communication (β = -17.03, p = .01), outgoing stress coping behaviour (β = -21.81, p = .002), and couples' stress-coping mechanism (β = -19.5, p = .004). Similarly, statistically significant group by time effect interactions were reported for the consensus (β= -14.17, p= .002), satisfaction (β= -20.47, p= .02), and cohesion (β=-12.34, p= .027) of Revised Dyadic Adjustment Scale (RDAS). However, statistically insignificant results were observed for HADS scale using group by time effect interaction. Despite this shortcoming, statistically significant group effects of couples' anxiety (β=5.8, p < .001) and depression (β=14.89, p < .001) were observed after their participation in the 3H intervention. Further subgroup analysis with Wilcoxon Test and Mann-Whitney U test reported that spousal caregivers improved significantly in adaptation after their partner suffered a stroke than persons with stroke. Discussion: The intervention is novel and it is the first to be developed and implemented in a Singaporean context. The development of the 3H intervention included shared decision making as one of its elements, which is an evolving approach to improve care for couples living with stroke (Armstrong, 2017). The 3H intervention is feasible in terms of its acceptability, demand, implementation, practicality, adaptation, integration, expansion, and limited efficacy (Bowen et al., 2009). The programme allowed persons with stroke and their spousal caregivers to voice their personal concerns related to stroke situation in the family as it comprised group and individual dyadic sessions. The group sessions promoted cross-family alliances, where spousal caregivers interacted with other spouses with similar demanding caregiving roles. Multicomponent interventions, such as the 3H intervention, strengthened a sense of support in persons with stroke and their spousal caregivers by improving family networks, and reducing their feelings of isolation. Unlike the studies of Hatfield and Cacioppo (1994) and Monin and Schulz (2009), it was evident that spousal caregivers who participated in the 3H intervention were able to adapt after the stroke of their spouse. They had learnt self-care strategies that eliminated detrimental effects on their psychological and physical health. Conclusion: All of the findings add new knowledge in showing that the systematic development of 3H intervention supports persons with stroke and their spousal caregivers during the adaptation process. As a result of participating in the programme, persons with stroke and their spousal caregivers were described as being more prepared to face the storm. As a couple, participants were able to overcome the struggle of adapting to living with stroke. Effective coping was evident, where the participants engaged in conversations, cultivated a sense of support, and fulfilled their educational needs. The need for the 3H intervention to be extended for community nursing after participants are discharged from hospital was addressed. Primary healthcare professionals should pay more attention to the difficulties and needs of this group of people and provide more resources to support them, to improve their quality of life. Significance: This study is the first to address an evidence-practice gap in the area of efforts to improve the lives and recovery of couples after a stroke by incorporating shared decision-making in the 3H intervention, in addition to providing information and skills training, prior to the patient's discharge home. The study is important as it improved the post-stroke adaptation of persons with stroke and their spousal caregivers. It added new knowledge and increased the understanding that the 3H intervention is feasible and can be implemented in a clinical context prior to a patient's discharge from hospital. Instead of the current clinical care that focuses predominantly on the individual living with stroke, the 3H intervention helped nursing administrators recognise the value of evidence-based development and support interventions for stroke couples.