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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