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NEW Optimizing Activity and Community Participation following Stroke
NEW Optimizing Activity and Community Participation following Stroke

5. Participation in Social and Leisure Activities Following Stroke

Notes

Recreation and leisure refer to activities that individuals engage in for enjoyment, relaxation, and personal fulfillment. These activities can range from hobbies, sports, or the arts and they play a vital role in promoting mental and physical health. For stroke survivors, engaging in recreational activities can aid in physical rehabilitation by enhancing motor skills and coordination, while also providing a sense of accomplishment and joy.

Social participation encompasses the ways individuals connect with others and engage in community life. For stroke survivors, maintaining social connections is essential for combating feelings of isolation and depression, which can often accompany the recovery process. Social engagement can also facilitate the sharing of experiences and resources, fostering a supportive network that aids in emotional recovery.

Recommendations and/or Clinical Considerations
5.1 Recreation, Leisure and Social Participation
  1. Individuals with stroke should be screened for goals specific to recreation, leisure and social participation [Strong recommendation, Moderate quality of evidence].
  2. A comprehensive assessment for interest and abilities to resume previous or new recreation, leisure and social activities should be performed using validated assessments when available. [Strong recommendation, Moderate quality of evidence]. 
  3. Individuals with stroke who experience difficulty engaging in recreation, leisure and social activities should receive individualized plans and therapeutic interventions developed through collaborative goal setting with their healthcare team [Strong Recommendation; High quality of evidence].
  4. Individuals with stroke should be provided with information and referral to community-based resources to meet ongoing physical, social, emotional, intellectual and spiritual needs [Strong recommendation; Moderate quality of evidence].
5.2 Relationships and Sexuality
  1. Individuals with stroke, their family and caregivers should be educated and counselled on the potential impact of stroke on interpersonal relationships, including spousal, familial, and other close relationships [Strong recommendation, Moderate quality of evidence]. 
    1. Topics to address in discussions may include coping, adapting, and adjusting; changed family roles, parental relationships; disrupted social identity, loss of social opportunities, emotional difficulties, impact of post-stroke fatigue on social participation; loneliness and social isolation [Strong recommendation, Low quality of evidence].
  2. All individuals with stroke should be given the opportunity to discuss intimacy, sexuality and sexual functioning at all stages of stroke care and recovery at a time appropriate for the individual [Strong recommendation; Moderate quality of evidence]. 
    1. Topics to address in discussions may include safety concerns, changes in sexual desire, and the potential impact of stroke on sexuality (e.g., physical, emotional, cognitive and/or communication) and resuming sexual activity [Strong recommendation; Moderate quality of evidence].
  3. Education sessions for individuals with stroke and/or partners may address potential changes in intimacy and sexuality, resumption of intimacy and sexual activities and frequently asked questions regarding relationships following a stroke [Strong recommendation, Low quality of evidence].
  4. Referral to a sexual health specialist may be considered for individuals with complex and/or persistent sexual difficulties [Strong recommendation, Low quality of evidence].

Section 5.2 Clinical Considerations

  1. When addressing intimacy, sexual function, and sexuality, the following factors should be considered regardless of current relationship status, sexual orientation, or gender identity and should be available for all individuals with stroke:
    1. Ensure conversations occur in an environment that prioritize privacy, safety, and comfort for the individual with stroke and includes their close relationships if preferred.
    2. Establish a therapeutic relationship prior to discussing sensitive topics.
    3. Tailor verbal and written information to the individual’s cognitive, sensory, and communication abilities.
    4. Initiate these discussions before, and continue them after transitions back to the community, including in supported living environments.
    5. Address the influence of factors such as pain, mood, anxiety, sensorimotor function, communication ability, medication, and spasticity on sexual function.
    6. Discuss indications, contraindications, and side effects of medications to improve sexual function.
5.3 Support for Community Participation
  1. Healthcare team members across settings should share information and linkages about local support services and disability benefits with individuals with stroke, their families and caregivers [Strong recommendation; Moderate quality of evidence]. 
    1. Healthcare team members, individuals with stroke, their families, and caregivers should work together to develop an accessibility plan that identifies and helps them to overcome any barriers to participation prior to transition to a home or community- living setting [Strong recommendation; Moderate quality of evidence].
    2. This plan should consider the individual’s physical function, communication, emotional, cognitive and perceptual abilities and impairments following stroke focused on the individual’s goals for community participation. [Strong recommendation, Moderate quality of evidence]. 
    3. Regional disability legislation and guidelines should be explained to individuals with stroke, family members and caregivers as appropriate to support transitions and access to required services [Strong recommendation, Low quality of evidence].
    4. Healthcare team members should ensure timely completion of documentation and applications by healthcare team members as required in collaboration with individuals with stroke, their families and caregivers, which can help to minimize delays with accessing eligible services and funding [Strong recommendation, Low quality of evidence].
Rationale +-

Resuming social and leisure activities following a stroke presents numerous challenges, as both physical and psychological barriers can hinder an individual’s ability to engage in previously enjoyed activities. Individuals with stroke and their families often worry about care transitions and losing the social, emotional, and practical support offered by an inpatient stroke service. Physical limitations, such as reduced mobility, weakness, communication or sensory challenges, coordination difficulties, or fatigue, often prevent individuals with stroke from participating in sports, hobbies, or social activities they once found fulfilling. Additionally, cognitive impairments can make it difficult to follow through with complex activities, such as playing musical instruments, reading, or participating in group activities. 

Despite potential challenges, individuals with stroke expressed the importance of access to community programs that support leisure and social participation throughout the recovery journey. Community programs can offer an opportunity to connect and learn from others, receive encouragement and motivation, build confidence, and support independence. These activities can also provide a chance to socialize and reduce isolation, providing the individual with a sense of community which can have a positive impact on mental and emotional health. Ensuring that individuals with stroke and their family are aware of available programs and resources, and that barriers to participation (e.g., transportation, cost) are addressed are important as individuals transition to the community. Follow-up visits with the healthcare team after discharge are valuable for supporting and connecting individuals with appropriate community programs and services, and for helping address ongoing or changing leisure and social participation goals and challenges. 

Recognizing that stroke can have an impact on resuming activities and on interpersonal relationships (e.g., spouse or partner, children, friends and other family members), ensuring focused education on these topics is important for individuals with stroke, their family and caregivers. Following stroke, changes to roles, responsibilities and relationship dynamics can occur, and support for navigating these changes can be beneficial. Information about local support services and disability benefits was highly valued by individuals with stroke, their family and caregivers. Documents and forms to access services and funding can often be difficult and confusing to complete, and individuals with stroke, their families and caregivers greatly appreciated support to complete documentation accurately and in a timely manner. 

Personal relationships, including intimacy, can be profoundly impacted by a stroke.  Individuals with stroke report experiencing significant challenges with interpersonal relationships and sexuality. Beyond physical changes, the emotional and psychological impacts of a stroke can also affect relationships. For many individuals with stroke, physical impairments such as reduced mobility, fatigue, or difficulties with coordination can interfere with the ability to engage in sexual activity. 

Individuals with stroke expressed the value of addressing factors such as mental health, spasticity, and other changes to help in managing relationships and expectations. They emphasized the importance of healthcare providers establishing a therapeutic relationship to support conversations on relationships, intimacy and sexuality. Additionally, clarity on which healthcare team members can provide information and support on these topics would be valuable. Conversations on relationships and sexuality should occur across the continuum of care, however individuals with stroke especially noted the importance of support on this topic once they return to community.

Performance Measures +-

System Indicators

  1. Availability of inpatient and community-based assessment services and resources for individuals with stroke discharges from acute care and/or inpatient stroke rehabilitation. 
  2. Proportion of individuals with stroke with documentation that information was given to them or their family on formal and informal educational programs, care after stroke, available services, process to access available services, and services.
  3. Access to resources in the community on sexual health and relationships following stroke.

Process Indicators

  1. Documentation of shared and collaborative decision-making between healthcare professionals and individuals with stroke regarding individualized transition plans.
  2. Proportion of individuals with stroke who return home following stroke rehabilitation who require community health services (e.g., home care or respite care).
  3. Proportion of individuals with stroke who are discharged home from stroke rehabilitation who receive a referral for home care or community supportive services.
  4. Proportion of individuals with stroke who return to the emergency department or hospital setting for stroke-related or non-physical issues following stroke (e.g., failure to cope).
  5. Median length of time from hospital discharge (whether from acute care or inpatient rehabilitation) to initiation of community health services.
  6. Frequency and duration of community health services, stratified by the type of service provided.
  7. Proportion of individuals with stroke who return to the community from acute hospital stay or following an inpatient rehabilitation stay who require admission to long-term care or a nursing home within six months or one year.
  8. Median wait time from referral to admission to nursing home, complex continuing care or long-term care facility.
  9. Documentation to indicate that assessment of fitness to drive and related counseling was performed.
  10. Number of individuals with stroke referred for driving assessment by occupational therapist in the community.

Patient-Oriented Indicators   

  1. Measure of burden of care for family and caregivers living in the community.
  2. Measure of participation in social and leisure activities following return home.
  3. Changes in quality of life measured at regular intervals during recovery and participation, and reassessed when changes in health status or other life events occur (e.g., at 60, 90- and 180-days following stroke).
Implementation Resources and Knowledge Transfer Tools +-

Resources and tools listed below that are external to Heart & Stroke and the Canadian Stroke Best Practice Recommendations may be useful resources for stroke care. However, their inclusion is not an actual or implied endorsement by the Canadian Stroke Best Practices team or Heart & Stroke. The reader is encouraged to review these resources and tools critically and implement them into practice at their discretion.

Health Care Provider Information

Resources for Individuals with Stroke, Families and Caregivers 

Summary of the Evidence +-

Evidence Table and Reference List 5a

Evidence Table and Reference List 5b

Leisure Activity

Many individuals recovering from stroke are unable to resume their previous leisure activities. Factors including physical limitations, attributable to residual disability, decreased motivation, environmental barriers, including transportation and affordability, have been cited as reasons for decreased participation. 

A variety of programs and interventions have been evaluated to help improve participation following stroke, although few have used an assessment of leisure as the primary outcome. Lee et al. 109 conducted a systematic review including 17 studies evaluating interventions addressing community participation, of which leisure activities were assessed in 8 studies. Interventions included individually tailored occupational therapy sessions, home leisure program, community-based group leisure education program, group yoga, exercise and leisure program and an aerobic training program. In 6 of the trials in which participation was assessed, there was a significant improvement in only one study.

A systematic review by Dorstyn et al 110 including the results from 8 RCTs that examined the benefit of a community-based intervention focusing on leisure therapy, leisure therapy + physical activity or leisure education, which provided an average of 17 sessions over 23 weeks. The majority of participants had experienced a mild or moderately disabling stroke within the previous year. While no pooled analyses were conducted, within individual trials significant improvement was noted at the end of treatment on measures of quality of life, mood and satisfaction with leisure activity. An 8-week peer-volunteer facilitated exercise and education program was associated with significantly greater improvement in median perceived Subjective Index of Physical and Social Outcome (physical component) scores at both at the end of treatment and at one year, compared with participants who received standard care. 111 Desrosiers et al.112 included 62 participants residing in the community with a history of stroke within the previous 5 years and who were experiencing some limitations in leisure participation or satisfaction. The intervention involved 8-12, 60-minute, weekly education sessions, while participants in the control groups received home visits from a recreational therapist following the same schedule as the intervention group. At the completion of the study, participants in the intervention group reported significantly more time spent in active leisure activities (MD=14.0 minutes, 95% CI 3.2-24.9, p=0.01) and involvement in a greater number of different activities (MD= 2.9, 95% CI 1.1-4.8, p=0.002). Participants in the intervention group had also gained significantly more points on the Leisure Satisfaction Scale (MD= 11.9, 95% CI 4.2-19.5, p=0.003) and in the satisfaction of leisure needs and expectations (MD=6.9, 95% CI 1.3-12.6, p=0.02). 

Sexuality

Reports of sexual dysfunction following stroke are common. Among several surveys including small samples, declines in sexual activity have been reported. Stein et al. 113 surveyed 35 individuals who agreed to participate, out of 268 who were included in a stroke rehabilitation research registry. Of those, 100% of men and 58% of women met the criteria for sexual dysfunction, 42% indicated their sexual functioning was worse following stroke, 94% reported that physical limitations impacted their sexual activity and 58.8% reported feeling less sexually desirable following stroke. Buzzelli et al. 114 also reported that among 60 patients (83.3%) reported a decline in sexual activity during the first year following stroke. Variables associated with disruption of sexual activity included fear of relapse, belief that one must be healthy to have a sex life and partner who is “turned off” at the prospect of sexual activity with a “sick person”.  

Only a few small trials examining interventions designed to address issues relating to sexuality post stroke have been published. Sansom et al. 115 reported no significant differences between groups on median Sexual Function Questionnaire Short-Form (CSFQ‑14) scores following a single 30-minute structured sexual rehabilitation session, conducted by a rehabilitation physician, compared with individuals who received a fact sheet. Guo et al. 116 reported that the percentage of stroke rehabilitation inpatients given the opportunity to talk about sexual issues increased from 0% at months 1-3 to 80% at month 10 following an intervention designed to ensure patients had opportunity to discuss sexual health with one of their healthcare providers. A study assessing a sexual education intervention found that patients who received a short (40-50 minute) education session that outlined the changes that they can expect in their sexuality post-stroke, addressed frequently asked questions and provided tips to avoid sexual dysfunction were more sexually active and experienced greater sexual satisfaction than patients who did not. 117 A Cochrane review 118 aimed to evaluate the effectiveness of interventions designed to reduce sexual dysfunction following stroke, which include 3 RCTs (212 individuals). Interventions included 50 mg oral sertraline to prevent premature ejaculation compared with placebo for 8 weeks; pelvic floor muscle training (1-2x/day x 12 weeks) compared with standard rehabilitation for erectile dysfunction after stroke; and a single, 30-minute individualised sexual rehabilitation session compared with written educational materials. The pharmacological intervention was associated with a significant improvement in sexual function at 4, 8 and 12 weeks and in a significant increase in partner satisfaction. The sexual rehabilitation program was not associated with significant improvement in median total CSFQ-14 scores at 6 weeks or 6 months. Finally, pelvic floor muscle training was not associated with significantly greater improvement median International Index of Erectile Function Questionnaire at 3 or 6 months.

Sex & Gender Considerations

There is limited evidence examining sex or gender differences in participation outcomes post stroke. Women were reported to have had greater handicap (i.e. participation restriction) in the long term after stroke, in a review that included the results from five studies, 119 although the difference was blunted after adjustment for age, functional outcome, and depression. More recently, Chen et al. 120 used data from the US National Health and Aging Trends Study to examine sex differences in participation restriction among 471 stroke survivors, which assessed four social activities including two formal activities (attending religious services and participating in clubs, classes, or other organized activities) and two informal activities (visiting with friends/family and going out for enjoyment such as dinner, a movie, or gambling). Compared with men, the odds of any participation restriction across all 4 social activities were not increased significantly in women after adjustment (OR=1.36, 95% CI 0.70- 2.65), nor were the odds of restriction in either formal or informal social activities increased.

Stroke Resources
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