Perceived Autonomy of Participation among Stroke Survivors - A Cross Sectional Study

Introduction

World Health Organization (WHO) defined stroke as ‘a clinical syndrome consisting of rapidly developing clinical signs of focal (or global in case of coma) disturbance of cerebral function lasting more than 24 hours or leading to death with no apparent cause other than a vascular origin’.¹

Recent stroke statistics show that it is the second-leading global cause for death only next to heart diseases, accounting for 11.13% of total deaths worldwide. It demonstrated the prevalence of 25.7 million, with 10.3 million people having a first stroke.² During the past 10 years, prevalence of stroke in India varied from 44.29 to 559/100,000 population and incidence varied from 105- 152/100,000 population per year.³

Sequelae following stroke is a long-drawn phenomenon and are considered under the broad umbrella of chronic disabling conditions.^4,5 Out of the many approaches that address disability, WHO has endorsed International Classification of Functioning, Disability and Health (ICF), a global model with the aim of facilitating a consistent approach to rehabilitation and integration of patient with his routine life.⁶

Previous studies indicate physical impairment levels as the best predictors in the domains of function and daily activities,^7-9 but the idea of full participation in societal roles is becoming increasingly relevant and represents a key goal and vision for many stake holders involved in rehabilitation process.¹⁰ While activity broadly is defined as execution of a task or action, participation is conceived as a dynamic complex interaction between an individual’s health condition, body functions, activities (functional status) and external factors representing the circumstances in which the individual lives.¹¹ ICF defined participation as “involvement in a life situation”. To enhance our understanding of this concept in everyday life, it is essential to better understand the phenomenon of individuals’ experiences, nature and structure of participation.¹² Literature concerning the conceptualization of participation, point aspects such as the subjective experience and the individual perspective are important considerations while discussing participation.^10,13,14

Autonomy as a pragmatic concept is considered crucial for the proper operationalization of participation and therefore is the ultimate goal for rehabilitation. Autonomy describes the extent to which the individuals are able to control their own life even when they are not actually performing activities themselves.^12,15 Autonomy simply implies sense of control, an integral component of selfimage and perception of quality of life.¹⁶ It translates into a whole family of value-laden ideas: individual liberty, privacy, free choice, self-governance, self-regulation, and moral independence. Chronic diseases may severely affect individual’s autonomy and daily functioning.

Comprehensive understanding of the level of autonomy and participation which are coherent concepts with respect to overall ability of an individual is vital in course of rehabilitation, especially in a social context.¹⁷ Apart from understanding the autonomy and participation levels, the stroke survivor’s self-perception of his abilities/ autonomy and perceived problems in participation is crucial in deciding overall social involvement and hence quality of life. Health perception or subjective health which is defined as “an individual’s experience of mental, physical and social events as they impinge upon feelings of well-being” is known to have a significant role in determining recovery.¹⁸

Furthermore, family support, culture, beliefs, social customs, stigma and many diverse factors within the community may have an impact on the overall conceptualization of these determinants among such patients.¹⁹ Factoring the above aspects into Indian scenario, understanding the perception of autonomy in a patient with respect to the condition and varied dynamic paradoxes within his/her community, is essential post stroke. Thus, with this objective, the present study was conducted among community- dwelling stroke survivors.

Materials and Methods

This cross-sectional study included sub-acute and chronic stroke²⁰ survivors of both the genders, residing in their respective communities with satisfactory language comprehension skills.¹⁷ Medically unstable patients, patients who were unable to communicate verbally/ non-verbally and patients undergoing treatment in the inpatient facility were excluded from this study.

The study was presented to the Institutional ethics committee, SDM Medical College and Hospital and the ethical clearance certificate was obtained. The subjects were recruited using convenient sampling method. The patients were explained in detail about the nature of the study, the objectives and a signed informed consent was collected.

The study was conducted to determine the perceived autonomy of participation among stroke survivors, using the Impact on Participation and Autonomy Questionnaire (IPAQ) and the patient responses were recorded.

IPAQ is a generic questionnaire, used for age group of 18-75 years. It contains 32 items in five domains, with each item having identical response options, ranging from 0 to 4 with higher scores representing poorer participation and autonomy. IPAQ is a valid, reliable tool and is responsive to change. IPAQ uses ordinal data and at least 75% of the subscale needs to be completed.^12,17,21

The data was collected by the researcher using personal interview method. The respondents either documented their responses themselves or interviewer recorded their responses and helped the subjects to complete the questionnaire.

Results

The data collected was analyzed and explained using descriptive statistics (means, standard deviation, frequencies and percentages). Mann Whitney test and Kruskal Wallis ANOVA were used to study the association of total IPAQ score with socio-demographic variables. IBM SPSS statistics software (version 23.0) was used for the analyses of data in the present study.

The study was conducted among 105 participants. The study included 81 (77.14%) male respondents and 24 (22.86%) female respondents. The participants in the study had a mean age of 56.45 (12.53) years. Maximum numbers of respondents were in the age group of 61 years i.e., 40.95%.

After stroke, 68.57% of the participants reported to have returned to their work, while 31.43% of participants had not returned to work. 44.76% of respondents reported hemiparesis on dominant side of the body and 55.24% on the non-dominant side. The post stroke duration among maximum number of subjects included in the study i.e., 46.67% was 11-20 months. Among the subjects who were surveyed in this study, Access to CareGiving services was analyzed based on both physical and emotional support that the person received from formal and/or informal caregivers and /or community resources to be able to carry out the daily life activities. 37.14% reported that they needed no support and were independent in their daily routine. 41.90% reported access to care giving while 20.95% did not receive any services and expressed a need for such services. Further, 37.14% reported no access to rehabilitation services whereas 62.86% of subjects were receiving regular rehabilitation services (Table 1).

Total IPAQ and domain scores were analyzed and viewed as ‘Very good’, ‘Good- Fair’ or ‘Poor-Very Poor’. Overall, 32.38% of respondents reported their perception of autonomy as ‘Very Good’ while 48.57% patients reported ‘Good- Fair’ and 19.05% reported ‘Poor- Very Poor’ perception category as per the total IPAQ scores (Table 2).

Mean IPAQ values in Return-to-work category showed significantly good perception of autonomy (p= 0.0001*). Mean IPAQ values with respect to gender (p=0.4803) and hand dominance (p=0.2847) did not show any statistically significant difference demonstrating that perception of autonomy and participation was independent of the gender and hand dominance among stroke survivors. Though perception of autonomy and participation was better in patients receiving rehabilitation services, the difference was not statistically significant (p= 0.1115) (Table 3).

Mean IPAQ scores did not show a statistically significant difference (p= 0.1530) with respect to age groups (Table 4).

Discussion

The findings of this study suggest that majority of the study population perceived their participation and autonomy as being ‘good to fair’ in different domains of their participation with a few respondents reporting ‘poor’ perception.

The cumulative IPAQ score showed no significance on perception of autonomy between genders, or hand dominance; a finding comparable to the reports of Fallahpour et al., who found no independent association of gender with perception of participation after stroke.¹³

We observed a significant connection between Returnto-work status and level of perceived participation and autonomy after a stroke, and this seems to be an important predictor. Whether the work status enhanced perceived participation and autonomy or if the people experiencing a high participation and autonomy are more likely to return to work may be a topic for further research. However, work likely contributes to a greater experience of autonomy due to changed focus and perspectives on life. Work can be suggested to be important for a sense of identity and belonging in society and a social context, besides the financial benefits.²² Li et al., in their study reported average-to-poor levels of self-perceived participation and autonomy at 1 and 3 months post-discharge.²³ Unlike their finding, in the current study, a poor perceived autonomy was observed among chronic survivors >21 months post stroke. A similar finding was reported by Gothenburg et al., who in their study reported lowest perception of participation and autonomy at one year post stroke.²⁴

Proot et al., in their study mentioned that health professionals can adopt specific measures and facilitate patients’ autonomy and active participation by attentiveness, tailored interventions, respectful dialogue and offering hope, while opposite strategies appeared to constrain autonomy and the subsequent perception.25 Thus, these strategies employed early in recovery may add value to this effect. It is noteworthy that the patients, who did not feel the need for care-giving services and were independent, demonstrated better perception of their autonomy. This adds to the understanding that patients who are independent in their functions frequently may have an improved perception. We determined through responses that even though dominance is viewed as an important feature of physical abilities, it does not significantly influence the perception of autonomy.

Limitations/ Recommendations

There was an un-equal representation of each gender with male respondents significantly higher in number. The accessibility or resources available to each participant was non-homogenous and may have a profound influence on their perception. The type of stroke, initial severities of the condition, co-existing co-morbid diseases and emotional factors were not taken into consideration in the present survey and can be addressed in future research.

Conclusion

This study concluded that majority of the study population perceived their participation and autonomy, both overall and within all domains as assessed on Impact on Participation and Autonomy Questionnaire (IPAQ) as ‘very good’ to ‘fair’ Stroke survivors with post stroke duration of 11- 20 months and independent for self-care reported best perception of autonomy. Another dynamically influencing component was returning to work which adds to the improved perception. Autonomy of self and perception of participation is a significant yet elaborate concept from the perspective of stroke survivors. Appropriate measures of care rehabilitation, social parity and contextual enablement may be crucial for overall wellbeing of these patients in the community.

Conflicts of Interest

Nil