Introduction:Caring for a patient with end-stage renal disease undergoing in-centre haemodialysis can be a stressful experience, likely to involve significant burden. Within the context of the new coronavirus pandemic, these patients are highly vulnerable to infection by COVID-19, which might increase the care demands and burden of family caregivers. Aim: This study aimed to explore the subjective experiences of family caregivers of non-COVID-19 patients with end-stage renal disease undergoing in-centre haemodialysis during the COVID-19 lockdown. Study design: A qualitative study was performed with a purposive sample. Methods: Semi-structured telephone interviews were conducted with 19 family caregivers (50.7 ± 14 years old) of patients undergoing in-centre haemodialysis in April 2020. Findings: Four major themes were identified: (1) emotional distress; (2) changes in caregiving responsibilities; (3) educational and supportive needs; and (4) coping strategies to deal with the outbreak and with the lockdown. Discussion: The findings suggest that family caregivers of patients undergoing in-centre haemodialysis have to manage several additional care responsibilities due to COVID-19 How to cite this article: Sousa H, Frontini R, Ribeiro O, et al. Caring for patients with end-stage renal disease during COVID-19 lockdown: What (additional) challenges to family caregivers?.
Family support has been identified as an important factor for the psychological adjustment of patients with chronic physical conditions. This study aimed to systematically review and conduct a meta‐analysis of studies comparing the effectiveness of family‐based versus patient‐oriented interventions for chronic physical conditions. The search was performed between April 12 and April 29, 2021, on Web of Science (all databases included), Scopus, PsycINFO, and CENTRAL. Thirteen RCTs were included. The results favored family‐based interventions for various patient outcomes related to pain, distress, self‐efficacy, social and emotional function, coping, the welfare of the domestic environment, capacity to mobilize social support, and sexual relationships with medium to large effect sizes (Cohen's d range: 0.45–0.90). This type of intervention also decreased family members’ anxiety, depression, sleep problems, and distress, improving search and presence of meaning in life, social support, the support provided to the patient, and sexual relationships with medium to very large effect sizes (Cohen's d range: 0.58–2.76). The meta‐analytical findings suggested that the patients’ (k = 12, d = 0.34; 95% CI = 0.13–0.55, I2 = 74%, p < 0.01) and family members’ (k = 4, d = 0.68; 95% CI = 0.08–1.27, I2 = 88%, p < 0.01) psychosocial outcomes significantly improved with family‐based interventions compared with patient‐oriented interventions. The meta‐analysis of patients’ self‐efficacy showed a medium‐size effect (d = 0.64; k = 3; I2 = 19%). The results suggest a trend toward the beneficial effects of family‐based interventions, but more research is needed with higher quality RCTs to confirm this hypothesis.
Accurate measurement of adherence is crucial to rigorously evaluate interventions aimed at improving this outcome in patients undergoing in-center hemodialysis. Previous research has shown great variability in non-adherence rates between studies, mainly due to the use of different direct (e.g., clinical biomarkers) and indirect (e.g., questionnaires) measures. Although self-reported adherence in hemodialysis has been widely explored, it is still unclear which is the most accurate questionnaire to assess this outcome; therefore, the question of how to optimize adherence measurement in research and clinical practice has emerged as a key issue that needs to be addressed. This systematic review and meta-analysis aimed to explore the criterion validity of self-report measures of adherence in hemodialysis established through the association between test scores and clinical biomarkers (the criterion measure). The protocol was registered in PROSPERO (2021 CRD42021267550). The last search was performed on March 29th, 2022, on Web of Science (all databases included), Scopus, CINHAL, APA PsycInfo, and MEDLINE/PubMed. Twenty-nine primary studies were included, and thirty-eight associations were analyzed. The Hunter-Schmidt’s meta-analysis was computed for the associations with more than two studies (n = 20). The results showed that six associations were large (16%), 11 were medium (29%) and the remaining were of small strength. The test scores from the End-Stage Renal Disease Adherence Questionnaire (range: 0.212<rc <0.319) and the Dialysis Diet and Fluid Non-Adherence Questionnaire (range: 0.206<rc <0.359) had medium to large strength associations with interdialytic weight gain, serum phosphorus, and potassium levels, indicating that these questionnaires have reasonable concurrent criterion validity to measure fluid control and adherence to dietary restrictions in patients receiving hemodialysis. The available data did not allow exploring the criterion validity of the test scores in relation to hemodialysis attendance (skipping and/or shortening sessions). These results suggest that the decision to use one questionnaire over another must be made with caution, as researchers need to consider the characteristics of the sample and the objectives of the study. Given that direct and indirect methods have their advantages and disadvantages, the combination of adherence measures in hemodialysis is recommended to accurately assess this complex and multidimensional outcome.
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