Leisure Time Activity Participation and its Impact on Quality of Life among Stroke Survivors

Introduction

Stroke is a major global public health problem defined by WHO as, “rapidly developing clinical signs of focal (or global) disturbance of cerebral function, with symptoms lasting 24 hours or longer or leading to death, with no apparent cause other than of vascular”.¹

Worldwide prevalence of stroke in 2010 was 33 million, with 16.9 million people having a first stroke. Stroke was the second-leading global cause of death behind heart disease, accounting for 11.13% of total deaths worldwide.²

India has been experiencing significant demographic, economic and epidemiological transition in the past two decades. Advances in medical technologies has increased the number of survivors post the episode of stroke.^2,3 Steady shift in clinical rehabilitation over the years has brought to the forum the concept of improving patient participation in various activities which are socially relevant, than only restoring the patient’s physical abilities.^4,5 The International Classification of Functioning, Disability and Health (ICF) provides a framework for describing functional disability as multidimensional concepts relating to body functions and structures, which involve activities people do and the life areas in which they participate.⁶ Recreation and leisure activities listed under ICF are participation in any form of play, such as informal or prearranged play and sports, programmes of physical conditioning, relaxation amusement or diversion, engaging in skilled activities or hobbies, reading for enjoyment, playing musical instruments, travelling for pleasure or simply socializing.⁶

Consequently, there is a lack of clarity regarding how leisure and participation should be addressed in rehabilitation programmes. To enhance our understanding of these pertinent concepts in everyday life, it is essential to better understand individual accounts of leisure participation with the aim of exploring the nature and structure of the phenomenon.⁷

Compared with healthy older individuals, those with stroke have poorer quality of life and higher rates of depression and fatigue. While rehabilitation professionals traditionally focus on basic activities of daily living (ADL) and Instrumental Activities of Daily Living (IADL), less attention has been placed on leisure and social activity.⁸

Social participation is defined as ‘the performance of actual activities in the domains of social life (domestic life, interpersonal life, education and employment, community, and civic and social life) through interaction with others in the context in which a person lives’.⁹

A significant component of this social well-being/ participation is based on an individual’s involvement in activities of leisure. But as Drummond mentions in his article, leisure is difficult to define and that reflects in the variety of definitions available.¹⁰ A fairly acceptable definition stated by Wilson who defined leisure broadly as, “an activity primarily chosen for its own sake after the practical necessities of life have been attended to”.¹¹

The framework of leisure is classified as a non-obligatory activity that a person is engaged in during discretionary time when one is not working, engaged in self-care or sleeping and it is also described as intrinsically motivating.¹² Leisure focuses on how people utilize their free time and how it impacts their health. A primary prevention perspective suggests that leisure activity may reduce the chances of suffering from poor health and risk behaviour.¹³ Participation in leisure activities is found to be a protective factor for individual’s health and is positively co-related with decreased levels of anxiety, depression and influences positively the social involvement and self-expression.¹⁴ It has been further noted that achievement oriented social leisure significantly predicted positive physical/ mental health and positively correlated with cognitive function, further lowering the risk of dementia.^15,16

One of the prime parameters in stroke survivors is Quality of Life (QOL), which outlines perceptions of their position in life, in context with the culture and their value system, in relation to their aspirations, anticipations, standards and concerns. Chronic illness like stroke is experienced as a deranging event that negatively impacts Quality of Life, not just by disrupting the body but also impacting the interests of the person, their daily activities and their occupations.¹⁷ As QOL is multifactorial, understanding the factors from the perspective of stroke patients may assist the therapists for investing in client centred practice and address the rehabilitation goals that are meaningful in relation to specific life circumstances. Besides, in India, the inconsistency in awareness and opportunities for continuum of care and also different beliefs, customs, traditions and practices make the dynamics more intriguing when encountering conditions like stroke.

Given these considerations, our study aimed to investigate the level of participation in leisure time activities among stroke survivors and assess its impact on their Quality of Life. Of equal importance is the exploration of factors acting as barriers to leisure time activity participation, and this research aimed to identify and document the most frequently reported impediments faced by stroke survivors.

Materials and Methods

Community-dwelling individuals who were sub-acute and chronic stroke survivors, who expressed willingness to participate, regardless of the gender were recruited from both rural and urban areas in Hubli and Dharwad. Exclusions were made for patients in the acute phase of stroke or undergoing inpatient treatment, as well as those facing communication difficulties, whether verbal or non-verbal. This cross-sectional study employed a survey method and obtained ethical approval from the Institutional Ethics Committee at SDM Medical College and Hospital, backed by an ethics clearance certificate. Detailed explanations of the study's nature and objectives were provided to the participants, and signed informed consent was obtained.

The researcher conducted personal interviews with recruited individuals in their local communities. Additionally, data was gathered from patients attending the Neuro-Physiotherapy Outpatient Department for therapy. Sociodemographic details of the patients were recorded, and they were screened for participation in leisure activities. The Stroke Specific Quality of Life (SSQOL) scale, a validated and reliable tool developed by Williams Weinberger in 1999, was utilized in this study. This scale aims to assess the health-related Quality of Life specific to stroke patients and consists of 49 self-report items across 12 domains. Participants responded to questions with reference to the past weeks. Alongside SSQOL scores, sociodemographic variables were collected, and their associations were examined as a primary objective of the study.

Results

IBM SPSS statistics software (version 23.0) was used for the analyses of data in the present study. The survey included 109 participants. The mean age of the subjects was 56.95±13.9 years. Both rural (47.71%) and urban (52.29%) participants were recruited for this study with maximum number of participants residing in urban community. Maximum number of respondents (42.20%) in the study were in 7-12 months duration post stroke. The study included 70.64% male and 29.36% female respondents. 53.21% of respondents presented with hemiparesis on the dominant side, while 46.79% presented on the non-dominant side. The age of the participants was segregated to five categories. The maximum number of respondents were in the age group of 50-59 years. Among 109 stroke survivors, majority of the subjects i.e., 72.48% reported that they participated in leisure time activities and 27.52% subjects responded that they did not participate in any kind of leisure time activities.

Comparison of leisure activity participation with Stroke Specific Quality of Life scores

Comparing the mean quality-of-life scores of Stroke Specific Quality of Life (SSQOL) was done using independent t-test. The difference between the groups was found to be significant, (P value 0.0001).

Table 1 and Figure 2 show the mean SSQOL score comparison among respondents who ‘participated’ or ‘not participated’ in leisure time activities

Further, comparison of individual domain scores of SSQOL among people who participated and not participated in leisure time activities was done using the independent t test. The analysis was found to be significant on all the domains except for ‘personality’ (P=1.475) (Table 2).

Barriers for participation

The patients who reported no participation were posed an open-ended question to list out barriers to their participation in leisure time activity. The barriers are summarised as follows:

• A significant 17.9% of stroke survivors reported challenges in utilizing upper extremity function for both leisure activities and Activities of Daily Living (ADLs).
• A corresponding 17.9% faced difficulties in walking and climbing stairs, acting as barriers preventing their attendance at social gatherings and visits to relatives. Stroke survivors identified irregular roads as a primary architectural hindrance to walking. 
• Urinary continence issues were noted in 7.7% of stroke survivors, impeding their ability to participate in various activities. 
• Approximately 12.8% of patients experienced aphasia, resulting in limited social engagement, communication difficulties with family members, and over the phone. Some participants had to frequently repeat words, leading to feelings of stigma.
• Depression played a role in 20.5% of participants abstaining from leisure activities.
• Dependency on caregivers was observed in 17.9% of stroke survivors, either completely or partially, impacting both ADLs and leisure activity involvement. Logistical challenges and irregular caregiver availability led to decreased participation and discontinuation of certain activities.
• Visual impairment affected 5.1% of stroke survivors, acting as a primary barrier to engaging in outdoor and indoor leisure activities.
• Notably, in all participants abstaining from leisure activities, there was a noticeable increase in 'just sitting' and 'sleeping.'

Discussion

Engaging in a meaningful, enjoyable, yet non-strenuous activities could mean well in context of lifestyle for a stroke survivor. But even though a lot is deliberated regarding the rehabilitation methods and community integration strategies, leisure activity participation is a concept which is seldom articulated about as an essential factor in context of comprehensive inclusion into the community.

This study determined that majority of the community dwelling stroke survivors i.e., 72.48% engaged in various leisure time activities. An interesting and note worthy outcome of the present study was significant association of leisure time activity participation and quality of life parameters like energy, family roles, language, mobility, mood, self-care, social goals, thinking, upper extremity function, vision and productivity. Participation influenced every component domain of the Stroke Specific Quality of Life measure except ‘personality’. Personality is an individually inherent trait and may require long-term involvement to elicit a noticeable change. Stroke as a medical condition itself is deeply appalling and may leave a negative impact on a person’s view of life.

A study reported that most patients within 1-3 years post-stroke reported no participation in activities in which they had had a strong interest before the stroke.¹⁸ The present study had greater number of subjects under 24 months post stroke but testified to being more active in leisure participation as they found feasible. This also implies that participation levels of chronic long term stroke survivors or the effect of leisure time activity on their QOL may be a scope for further research.

Apart from the above findings, subjects’ opinions in terms of barriers to their participation in leisure time activity was also solicited and descriptively studied. According to Law et al., environmental constraints (accessibility, availability of resources, social support and equality) may pose challenges with respect to participation.¹⁹ Apart from these, the commonly encountered barriers that we found were physical deficits, dependency on caregivers, visual/ speech deficits, incontinence, environmental barriers and social stigma.

Looking ahead, discussions on coping strategies and means for post- stroke survivors to re- engage in their previous leisure time activities is essential. As leisure activities may have a social influence, standardised leisure assessment scales which suit the Indian population may be developed. Barriers and facilitators to leisure time activity participation may be more deeply, qualitatively explained and strategies to overcome these barriers in the community may also be detailed in future studies.

Conclusion

In conclusion, leisure time activity and participation are vital components of community living, potentially yielding profound positive impacts and improving the quality of life among stroke survivors. Increasing awareness among caregivers and patients during early rehabilitation can significantly contribute to optimal outcomes in community life.

Conflict of Interest

None