Burden, depression and anxiety in primary caregivers of children and adolescents in renal replacement therapy

Abstract

Introduction: Chronic kidney disease (CKD) is rare in children, but it causes repercussions in several aspects of life, because the disease and treatment cause great changes in the daily lives of the child and his family, increasing the burden on caregivers. Objective: To evaluate the burden of primary caregivers of children and adolescents who undergo renal replacement therapy (RRT). Methods: Cross-sectional, observational study performed at the Pediatric Renal Unit of a school hospital in the Northeast. Forty-nine primary caregivers of pediatric patients with CKD in RRT followed up in our clinic participated in the study. We used validated instruments to assess burden, depression and anxiety. We ran some tests to analyze the findings of burden, depression and anxiety in the sample. Results: Most of the caregivers are the mothers of these children (89.8%), aged between 36 and 45 years (46.9%), have Elementary School education only (55.1%) and reported feeling pain in the body (69.4%), but they did not have chronic disease. The majority of the children have been in RRT from 1 to 3 years (40.8%), aged from 9 to 11 years (30.6%), are male (55.1%), and under hemodialysis (38.8%). The caregivers had a moderate level of burden (2.10), a high prevalence of moderate to severe depression (18.4%) and anxiety (47%), and a strong correlation between burden, depression and anxiety. Conclusions: Caring for a child with CKD is an intense experience, with negative consequences, due to uncertainties about the future and the very care these children require. We need to do something to help these caregivers better manage care, as well as cope with their own feelings.

COVID-19 Outbreak and Management Approach for Families with Children on Long-Term Kidney Replacement Therapy

“…The possible reasons are that the caregivers of the children on kidney failure treatment during the epidemic have parental, medical, and disease prevention responsibilities and that the physical, logistical, and financial challenges they face in caring for their children make them more vulnerable to mental distress. Additionally, the prevalence of depressive symptoms and anxiety of caregivers in our study did not tend to be higher than in previous studies conducted before 19% and 47% of 49 caregivers of children on KRT experienced depression and anxiety, respectively (19). However, with the different tools and small sample sizes, it is hard to ascertain whether the differences in the prevalence of depressive symptoms and anxiety before and after COVID-19 were significant.…”

Impacto da doença renal crônica em adolescentes em tratamento hemodialítico

“…18 CKD is a long and complex treatment that imposes restrictions on the patient's life, resulting in negative aspects in relation to the psychic behavior of the patient, causing greater suffering associated with the disease and dialysis treatment. 21 These feelings can be related to the impact of diagnosis and hemodialysis treatment, as well as generating a deep reflection in patients regarding the consequences of treatment, such as medication use, social adaptation and dietary restrictions, and this can generate fear, doubts and insecurities as seen in the speaches of the adolescents in this research.…”

“…thus, a target of mental illness due to the consequences of deprivation imposed by the disease and treatment, since at home, the family will have to comply with water and food restrictions, as well as deprivation in family activities, which may expose the adolescent to risks, such as travel, affecting family dynamics. 21 This family suffering contributed to the constant threat of the incurable disease, which has to face the irreversibility of the disease, causing a family restructuring imposed by the context of the disease and its treatment. 23 At this moment, the family is expected to play the role of responsible caregiver, trying to guarantee all the necessary well-being to their child in this new universe that the disease brings, causing feelings of worry and stress, as can be seen in the speeches above.…”

Effects of Meditation on Mental Health and Cardiovascular Balance in Caregivers

“…Depression is reported in at least one-third of caregivers of persons with dementia, a higher prevalence than that observed in the general population or in the caregivers of persons with other physical or psychological diseases [ 7 ]. Researchers also described a correlation between the anxiety of caregivers over an uncertain future and burnout [ 8 ]. However, although there is some evidence that caregiver burden can generate unhappiness [ 9 ], there is no research on the effect of interventions on their self-perception of happiness.…”