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Main Article Content
Burden of disease and quality of life of first degree relatives and other caregivers of patients with chronic kidney disease
Abstract
Background: Chronic kidney disease (CKD) poses enormous burdens to the individual affected. Caregivers are usually not considered to share in this disease burden (DB). The study aimed to assess the burden of disease in relatives and non-relative caregivers of patients with CKD.
Methods: Analytical descriptive study of caregivers of patients with CKD. The research instruments used were in four parts, the sociodemographic data and 3 DB instruments that include World Health Organization Quality of Life Questionnaire in Brief (WHOQOL– BREF), Caregivers Guilt Questionnaire (CGQ) and Zarit Burden Interview (ZBI)
Results: Of the 305 caregivers enrolled, 258(84.6%) and 47(15.54%) were relatives and non-relatives, respectively, while 225 (73.8%) caregivers were less than 45 years in age. The mean scores of DB were 90.1±12.7, 21.5± 6.1 and 24.5 ± 13.6 for WHOQOL-BREF, CQG and ZBI, respectively. Increased burden of CKD on caregivers were reported in 47.5%, 59.0% and 62.3% for WHOQOL-BREF, CQG and ZBI, respectively. Durations of dialysis (OR:1.50),) and caregiver (OR:2.36) were factors independently associated with increased DB.
Conclusion: Majority of the caregivers were young relatives of patients with CKD and reported high burden of disease. Durations of dialysis and caregiving associated with high DB.
French title: Fardeau de la maladie et qualité de vie des parents au premier degré et autres soignants de patients atteints d'insuffisance rénale chronique Titre du fonctionnement courant : Le fardeau des soignants de patients atteints d'insuffisance rénale chronique
Contexte de l'étude : L'insuffisance rénale chronique (IRC) représente un fardeau énorme pour la personne concernée. Les soignants ne sont généralement pas considérés comme partageant ce fardeau de la maladie (FM). L'étude visait à évaluer le fardeau de la maladie chez les proches et les soignants non apparentés de patients atteints d'IRC.
Méthode de l'étude : Étude descriptive analytique des soignants de patients atteints d'IRC. Les instruments de recherche utilisés étaient divisés en quatre parties : les données sociodémographiques et 3 instruments DB, dont le questionnaire sur la qualité de vie de l'Organisation mondiale de la santé (WHOQOL-BREF), le questionnaire sur la culpabilité des soignants (CGQ) et l'entretien sur le fardeau de Zarit (ZBI).
Résultats de l'étude : Sur les 305 soignants inclus, 258 (84,6 %) et 47 (15,54 %) étaient respectivement des parents et des non-parents, tandis que 225 (73,8 %) soignants avaient moins de 45 ans. Les scores moyens de DB étaient de 90,1 ± 12,7, 21,5 ± 6,1 et 24,5 ± 13,6 pour les scores WHOQOL-BREF, CQG et ZBI, respectivement. Une augmentation du fardeau de l'IRC sur les soignants a été signalée chez 47,5 %, 59,0 % et 62,3 % pour les scores WHOQOL-BREF, CQG et ZBI, respectivement. Durées de dialyse (OR : 1,50) et de soins (OR : 2,36)
Conclusion: La majorité des soignants étaient de jeunes parents de patients atteints d'IRC et ont signalé une charge de morbidité élevée. Les durées de dialyse et de soins étaient associées à une DB élevée.
