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Effectiveness of the Dyadic Coping Intervention of Social Participation (DCISP) for stroke survivors: study protocol for a randomized controlled trial
BMC Psychology volume 12, Article number: 500 (2024)
Abstract
Background
Enhancing social participation is not only the main goal of stroke survivors' community rehabilitation but also a protective factor affecting their physical and emotional health. The current state of stroke survivors' social participation is not encouraging due to the high disability incidence of stroke. Spouses may play a facilitating role in the social participation of patients by providing them with support and assistance. However, there remains a lack of evidence specifically regarding dyadic coping interventions of social participation for stroke survivors, and the intervention strategies are still underdeveloped without clear theoretical frameworks. Therefore, this proposed study aims to develop and evaluate the effectiveness of the Dyadic Coping Intervention of Social Participation (DCISP) for survivors of first-episode homebound stroke.
Methods
A single-blind (assessor-blinded), randomized controlled trial will be conducted to verify the effectiveness of DCISP. The randomized controlled trial will be preceded by a feasibility study (N = 20) of DCISP in stroke survivors. Stroke survivors will be randomly classified (1:1) into either a control (N = 50) or an experimental group (N = 50). In addition to routine care, participants in the experimental group will receive six 40 ~ 45 min sessions of guidance, once every two weeks. The primary outcome is social participation of stroke survivors, measured using Impact on Participation and Autonomy Questionnaire (IPA) and Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P), and the secondary outcomes will be measured by Knowledge Questionnaire for Stroke Patients (SPKQ), Stroke-specific Quality of Life Scale (SS-QOL), Dyadic Coping Inventory (DCI), Modified Rankin Scale (mRS) and Zarit Caregiver Burden Interview (ZBI-22). These will be measured at baseline(T0), during the intervention (T1 = 1 month), and after intervention completion (T2 = 3 months, T3 = 6 months).
Discussion
Findings from the study will provide evidence of the effects of DCISP on improving the social participation of first-episode homebound stroke survivors. The results of this study may support the implementation of survivor–spouse dyads care support in stroke survivors and provide a reference for clinical rehabilitation nursing practice, offering new insights into nursing interventions for stroke patients.
Trial registration
Chinese Clinical Trial Registry (ChiCTR) ChiCTR2400083072. Registered on 20 July 2023.
Background
Stroke is the second leading cause of disability and death worldwide, and it is also the primary cause of death and disability among Chinese adults [1]. China ranks first globally with an overall lifetime risk of stroke at 39.9%. In China, the burden of stroke is increasing due to the accelerated aging and urbanization processes. Stroke patients frequently have varied degrees of functional impairments, such as swallowing, speech, motor, sensory, cognitive, and mental health problems, which have a major impact on their daily lives and hinder their normal social participation [2, 3]. Even in stroke patients without functional impairments, the degree of social participation may drop [4]. Therefore, it is necessary to develop effective rehabilitation interventions, which can reduce the degree of disability, improve social participation and reduce social burden.
Definition of social participation and its importance for stroke survivors
In 2001, the World Health Organization (WHO) introduced the International Classification of Functioning, Disability and Health (ICF), which defines "social participation" as "the individual's involvement in different aspects of real-life social environments [5]." Social participation reflects the rehabilitative outcomes of chronic disease patients in a disabled state, representing their recovery and health status [6]. Several studies had shown a positive correlation between social participation and physical function. Furthermore, social participation can impact the quality of life and emotional state [7, 8], predict life satisfaction among patients, and enhance the well-being of older adults [9]. Therefore, improving social participation is crucial for the rehabilitation of stroke patients.
Research on the needs of stroke patients related to social participation had shown that stroke patients require nurses' assistance in engaging in social activities of interest, managing relationships with spouses, and handling family relationships [10]. Although stroke patients express a desire to join in social activities, their degree of engagement is far from encouraging. Studies have found that post-discharge stroke patients face moderate difficulties in carrying out daily tasks and engaging in social activities [11]. Even patients without physical impairments may experience a decline in their capacity for social participation [4].
Limited research on interventions for social participation among stroke survivors
Current research on social participation among stroke survivors primarily included improving patients' physical activity limitations, cognitive impairments, and language difficulties, as well as directing social participation interventions such as group activities, teaching social participation skills, and vocational rehabilitation. Comprehensive rehabilitation interventions were also conducted to enhance patients' social participation. The "Improving Participation After Stroke Self-Management Program" (IPASS), created by Wolf et al. [12], is one instance of a self-management program for stroke survivors. The result showed that among young and middle-aged stroke patients, a 12-week intervention improved the understanding of the relationship between health, participation, environmental support, and personal barriers. It also improved their short-term self-efficacy and made it easier for them to participate in activities, leading to a rise in their level of involvement in social, familial, and community activities. Another self-management intervention involves a 16-week program including aerobic exercise, exercise health education, energy conservation management, and prevention of recurrence showed significant improvement in social participation, with long-term effects observed during follow-up [13]. Mayo combined the Mission possible© program with exercise components, and the result showed a three-hour weekly increase in meaningful activities of patients and improved reintegration into normal life [14]. However, most research in China focuses on the current level of social participation among stroke patients and the influencing factors, and the guidelines do not explicitly present intervention strategies for improving social participation.
Positive dyadic coping can promote survivor–spouse dyads to deal with stress
Most intervention studies in stroke patients have concentrated on patient-centered approaches, ignoring the importance of spouses and families in stroke rehabilitation. Spouses as primary caregivers for stroke patients in homebound rehabilitation have a direct impact on the patient's recovery through their caregiving abilities, coping skills, and attitudes toward the illness [15]. The dyadic coping method utilizes the unique strengths of spouses, encouraging partners to cope with the illness together, support each other, and help patients feel more confident about their treatment and have a better prognosis [16]. Campbell [17] et al. used a training manual developed by medical psychologists to give intervention providers uniform instruction. The intervention providers conducted a 6-week symptom management skills training program for 12 couples consisting of prostate cancer patients and their spouses. The training sessions occurred once a week for one hour each. The training manual included six sections covering disease information, problem-solving skills, cognitive and behavioral coping skills (such as communication skills, relaxation training, and exercise pacing). The results showed that this intervention improved the patients' quality of life and alleviated the stress, depression, and fatigue experienced by their spouses. However, the role of dyadic coping in social participation among stroke survivors has not been further validated.
Therefore, this study develops a Dyadic Coping Intervention for Social Participation (DCISP), which is an intervention that focuses on social participation and involves the active participation of stroke survivor couples. In the preliminary phase, the research team conducted a literature review and qualitative interviews to learn more about the variables impacting stroke patients' social participation. Three main conclusions were drawn: (1) barriers to participation: self-care limitations, unsatisfactory rehabilitation outcomes, fear of falling, negative emotions, illness stigma, and concerns about burdening others, (2) facilitators of participation: acceptance of the illness, belief in rehabilitation, social support, and perceived benefits of participation, (3) multidimensional needs of patients: psychological care and professional rehabilitation counseling. Based on these findings, modifiable intervention targets were identified. The Information-Motivation-Behavioral Skills (IMB) theory was used as the theoretical framework to develop the DCISP. The intervention included information interventions through health education, motivation interventions through social support and spousal supervision, and skill-based interventions to enhance participation abilities. The intervention was further refined using the Delphi method.
In this study, a feasibility study will be carried out in order to assess acceptability and feasibility indicators, including patient compliance, recruitment rate, and participant feedback. Next, the effectiveness of DCISP will be evaluated through a randomized controlled study. Outcome measures include social participation, stroke knowledge, quality of life level of stroke survivors, caregiver burden of spouses, and dyadic coping of survivor-spouse dyads.
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