Adherence to home-based exercise programs among stroke survivors and perspectives of informal caregivers: a mixed method study

Abstract Background Assessing adherence to home exercise programs (HEPs) concurrently from stroke survivors (SSVs) and their caregivers may address the existing evidence of conflicting perceptions about adherence to HEPs. This study assessed factors affecting SSVs' adherence to HEPs and caregivers’ perspectives, with consideration of cultural beliefs about stroke. Method This was a mixed-method design involving a quantitative assessment of 66 SSVs and a qualitative assessment of eight caregivers on enablers of and barriers to HEP adherence. Quantitative data on adherence, and its correlates, were obtained with a validated self-report adherence scale and a 12-item validated questionnaire on factors influencing HEP adherence. Qualitative data were assessed using in-depth interviews (IDIs). Eligible SSVs and their caregivers were purposively selected for this study. Consenting SSVs were screened for cognitive impairment using the Short Portable Mental Status Questionnaire, and those who scored ≤ 2 were assessed for functional independence using the Barthel index (BI). Informal caregivers of SSVs with BI scores of 0–80 participated in the IDI. Socio-demographic data of respondents were also obtained. Quantitative data were analyzed using descriptive and inferential statistics at the alpha level of P < 0.05. Qualitative data was analyzed thematically using descriptive and interpretative strategies. Results The majority 43 (65.2%) of respondents who were SSVs were non-adherent to HEPs. Among the 23 adherent respondents, the majority were males 19 (82.6%), aged 40 to 59 years 14 (60.7%), had right hemiparesis 15 (65.2%), one co-morbidity 18 (78.3%), BI score ≥ 80 21 (91.3%), and self-employed 13 (56.5%). Of respondents with over 6 months’ post-stroke history, 22 (33.3%) had the highest adherence level. Gender, smoking status, and BI scores were significantly associated with adherence level ( P < 0.05). There were significant negative correlations between adherence level and factors influencing adherence to HEPs ( r ranged from − 0.65 to − 0.21; P < 0.05). Caregivers identified knowledge, treatment consistency, simplification and progression of HEPs, motivation/support, and spirituality as enablers to HEPs, while barriers were caregiver burden, absence of support/care, and health status of the SSV. Conclusion Adherence to HEPs among SSVs is poor and associated with gender, smoking status, BI score, and attitude of SSVs towards prescribed exercise. From the perspective of the caregivers, enablers of HEP adherence are knowledge, treatment consistency, HEP simplification and progression, motivation, support, and spirituality, while barriers were SSV’s health status, lack of morale, support, and caregivers’ burden.