Caring burden and coping with haemodialysis: a qualitative study with family caregivers in Sri Lanka.

OBJECTIVE: The number of patients with end-stage kidney disease (ESKD) requiring renal replacement therapy in Sri Lanka is significantly rising. Most of these patients depend on haemodialysis, carrying a significant burden on their family caregivers. To develop care and support for both the patient and their family caregiver, it is crucial to understand how caregivers experience their caregiving situation. Therefore, this study aimed to explore family caregivers' experiences of burden and coping when caring for a family member receiving haemodialysis in the Sri Lankan context. DESIGN: Qualitative study with an exploratory design. SETTING: Family caregivers were recruited at a haemodialysis unit of a main government sector hospital in Sri Lanka between October and November 2021. PARTICIPANTS: A purposive sampling of 11 family caregivers who cared for a family member receiving haemodialysis in a main government teaching hospital in Sri Lanka for at least 3 consecutive months. Data were collected through individual semistructured telephone interviews and analysed using qualitative content analysis. RESULTS: The results showed an overarching theme, 'striving to hold on and not let go', with four categories: (1) feeling exhausted by the care burden, (2) feeling burdened as failing the care responsibility, (3) striving to cope and find meaning in caregiving, and (4) coping with caregiving through others' support. CONCLUSION: The results show that the family caregivers have a multifaceted burden. They continued caring for their family member receiving haemodialysis while making adjustments to the burdensome caregiving situation despite many constraints and suffering. Psychosocial support and financial assistance, including family counselling, are needed by family caregivers, through a community support system, to ensure endurance during their family members' illness trajectory. Advance care planning is vital to alleviate care uncertainty and to meet the care needs of patients with ESKD, particularly in resource-constrained settings.

Psychometric properties of End Stage Renal Disease-Adherence Questionnaire-Sinhalese version among patients receiving haemodialysis.

The chronic kidney disease is a leading public health concern, particularly in low-to middle-income countries, while the number of patients receiving haemodialysis is rapidly increasing. Adherence to a complex treatment regimen is vital for those patients on maintenance haemodialysis though the precise evaluation is reported inadequately. This study aimed to evaluate the psychometric properties of Sinhalese version of End Stage Renal Disease-Adherence Questionnaire (SINESRD-AQ) to assess treatment adherence behaviour among patients receiving haemodialysis in a Sri Lankan hospital. The cultural adaptation of ESRD-AQ involved forward and back translation, expert committee consolidation and pretesting among patients (n = 10). Face and content validity of the questionnaire was evaluated using a modified Delphi technique. Construct validity of the subscales of SINESRD-AQ was evaluated using confirmatory factor analysis (CFA). A descriptive cross-sectional study among a consecutive sample of 150 patients receiving haemodialysis in a selected Teaching hospital, Sri Lanka was involved in performing CFA. Reliability was confirmed with test-retest reliability. Excellent face and content validity were reported with Item level content validity index (0.83-1.0), Average Item level content validity index for whole scale (0.93), Item level content validity ratio (0.67-1.0) and modified kappa statistic coefficient (0.81-1.0). CFA of two subscales demonstrated better indices closure to the model fit with five- item two factor model for direct adherence behaviour subscale and eight-item two factor model for attitude/perception subscale. The intra class correlation coefficient of 0.837 (p<0.001) and 0.752 (p<0.001) indicated acceptable test-retest reliability of direct adherence behaviour and attitude/perception subscale respectively. The study confirmed SINESRD-AQ as a valid and reliable measure which enables periodic assessment of treatment adherence behaviour of the patients receiving haemodialysis in a Sri Lankan hospital.

Psychometric Properties of an Instrument to Determine the Factors Affecting Treatment Adherence Among Patients Receiving Hemodialysis in Sri Lanka.

Nonadherence is a widespread problem among patients receiving hemodialysis, while contributing factors are underexplored due to lack of a validated instrument. The study aimed to develop and validate a new disease-specific instrument determining the factors affecting treatment adherence behaviors among patients receiving hemodialysis in a Sri Lankan hospital. The content validation process using a modified Delphi technique suggested 42-item instrument with an average Item-level Content Validity Index (I-CVI) of 0.94. Subsequent principal component analysis (PCA) revealed 5 components with 17 items (patient-centered psychological and physical factors, factors associated with health care, hemodialysis therapy-related factors, socioeconomic factors, and factors associated with the continuity of the treatment), explaining 67.24% total variance. The reliability estimate based on Mislevy and Bock for each component greater than 0.8 and overall standardized Cronbach's alpha of 0.605, indicated acceptable internal consistency reliability. Root mean square residual (RMSR) and weighted root mean square residual (WRMR) indices of 0.084 and 0.059, respectively, indicated acceptable model fit. The final 17-item instrument provides a valid measure for the factors affecting treatment adherence behaviors of the patients receiving hemodialysis in a Sri Lankan hospital.