Patient and caregiver perspectives on substance use in children and adolescents with chronic kidney disease: a systematic review and thematic synthesis

 

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https://storage.unitedwebnetwork.com/files/1099/380aa725086694186a7ee81e60118d79.pdf
Patient and caregiver perspectives on substance use in children and adolescents with chronic kidney disease: a systematic review and thematic synthesis

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Anastasia
Hughes
Anastasia Hughes anastasia.hughes@sydney.edu.au University of Sydney Sydney School of Public Health Sydney Australia *
Germaine Wong germaine.wong@health.nsw.gov.au University of Sydney Sydney School of Public Health Sydney Australia -
Allison Jaure allison.jaure@sydney.edu.au University of Sydney Sydney School of Public Health Sydney Australia -
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Substance use increases the risk of mortality, morbidity including cardiovascular and pulmonary diseases, progression of CKD, and hospitalisation in patients with CKD. In adolescents and young people with CKD it is estimated that 39% used alcohol, 17% used e-cigarettes use, 16% used cigarettes, and 15% used marijuana. However, Little is known about the perspectives of children with CKD and their caregivers. The aim of this study was to identify the perspectives of children with CKD and their caregivers on substance use.

We searched MEDLINE, Embase, PsycINFO, and CINAHL from database inception to October 2025 for all studies that reported the perspectives of children with CKD and their caregiver’s perspective on substance use. The content of these studies was thematically analysed.

We identified 17 studies, from which five themes were identified. Uncertain of risks to the kidney highlighted patients and caregivers with limited knowledge on the effects of substance use to their health, graft and tolerance level. Desiring independence and ability to ascertain responsible use encompassed patients highlighting a lack of information on substance use and kidney health and lack of communication between patients and their health professionals. Restrictions impeding on social acceptance and participation involved patients losing a sense of normality and feeling different to their peers.  A coping mechanism for pain and stress included using substances as a copy strategy. Guilt and unworthiness involved patients questioning whether they deserve of a transplant due to their substance use behaviours.

Preventing and managing substance use in children with CKD remains clinically challenging along with potential under-diagnosis of substance use due to lack of screening and disclosure by patients. Children with CKD, and caregivers identified the challenges of co-occurring substance use and CKD, whilst highlighting opportunities and strategies to prevent and manage substance use in children with CKD. Further in-depth understanding of the perspectives and experiences of children and caregivers are needed to improve substance use in children with CKD.

Kewords