Objective To describe the experiences and perspectives of children and adolescents on dialysis.
Design A systematic review of qualitative studies was conducted that explored the experiences of children on dialysis. Electronic databases and reference lists of relevant articles were searched to October Week 2, 2010.
Results A total of 17 studies, which reported the experiences of 143 children receiving dialysis, were included. Five major themes were identified: loss of control (high reliance on carers, parental overprotectiveness, unrelenting dependence on a machine, impaired body integrity), restricted lifestyle (limited socialisation opportunities, academic struggle), coping strategies (hope for kidney transplant and medical advances, social support, positive determination and self-awareness, engaging in activities, denial), managing treatment (ownership, proactive involvement, adherence to fluid and diet restrictions) and feeling different (abnormal physical appearance, injustice, being a burden).
Conclusions Children undergoing dialysis experience impaired growth, invasive procedures, school and social constraints. They often have poor self-esteem and a pervasive sense of losing their identity, body integrity, control, independence and opportunity. Interventions are needed to equip children with the capacity to manage their health, participate in community, engage in ‘permissible’ recreational activities, progress in their studies, and remain vigilant in dialysis and treatment responsibilities, for improved health and treatment outcomes.
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Funding AT is supported by the postdoctoral fellowship (funded under the National Health and Medical Research Council Capacity Building Grant in Population Health, ID 457281) The study sponsor had no role in the study design, the collection, analysis and interpretation of the data, the writing of the report, and the decision to submit the paper for publication.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement AT has full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.