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Author Interview: Dr Allison Tong

Research Fellow

Centre for Kidney Research
The Children's Hospital at Westmead
Cnr Hawkesbury Road and Hainsworth Street
Locked Bag 4001, Westmead NSW 2145
Sydney, Australia

Publication:

Children's experiences of dialysis: a systematic review of qualitative studies

Lidwien Tjaden, Allison Tong, Paul Henning, Jaap Groothoff, Jonathan C Craig

Arch Dis Child archdischild-2011-300639
Published Online First: 7 March 2012doi:10.1136/archdischild-2011-300639
What are the main findings of the study?

We conducted a systematic review of thematic synthesis of qualitative studies on the experiences of children on dialysis and identified five major themes.
These included: 

  • loss of control, including subthemes of high reliance on carers, parent overprotectiveness, unrelenting dependence on a machine, and impaired body integrity; 

  • restricted life, children felt they had limited socialisation opportunities and struggled to perform academically; 

  • coping strategies; which encompassed having hope for a kidney transplant and medical advances, social support, preoccupying themselves with non-dialysis activities, and denial to retain normality; 

  • managing treatment, with subthemes of ownership, proactive involvement, and adherence to fluid and diet restrictions; and 

  • feeling different, in which children felt they had an abnormal physical appearance, a sense of injustice, and believed they were a burden on their family.

Were any of the findings unexpected?

Our findings are based on primary research therefore it is inevitable that our themes reflect what has been found in previous research.

However, by comparing across studies, we developed a new conceptual framework which illustrates links between themes.

Also, we have identified gaps in knowledge about children’s perspectives on mortality, expectations of transplantation, and current sources of support including the internet and social media, and risk-taking behaviours.

What should clinicians and patients take away from this study?

Dialysis is unrelenting and children often have poor self-esteem and a pervasive sense of losing their identity, body integrity, control, independence and opportunity.

Interventions and initiatives are needed to equip children and adolescents with the capacity and confidence to manage their own health, participate in a social community, engage in ‘permissible’ recreational activities, progress in their studies, and remain vigilant in dialysis and treatment responsibilities.

What recommendations do you have for future studies as a result of your study?

Children need multifaceted care which involves emotional, social and educational interventions.

An appropriate dialysis self-management program may promote a sense of ownership and confidence in children/ Facilitating or providing access to support groups with other children on dialysis may increase self-esteem and normalise attitudes to illness.

School-based interventions are likely to help increase the capacity of children on dialysis to engage in studies and form supportive friendships with their well peers.

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