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Growing up, gaining independence: supporting teenagers to take control of managing their chronic kidney disease

02 September 2022

A recent study, funded by Kidney Research UK, has found new ways to help teenagers develop independence in managing their chronic kidney disease (CKD). 

What happens as teenagers with kidney disease get older?

Some young people with CKD can find it challenging to develop independence in managing their condition as they get older. As a result, they can experience poor health and wellbeing. Health professionals can encourage young people to take charge of their own healthcare but we don’t know much about how families can best be supported with this.  

Teenagers sitting on a wall with backs to camera
Photo by Sammie Chaffin on Unsplash

In 2017, Dr Ruth Nightingale was awarded an Allied Health Professional Fellowship from Kidney Research UK to carry out a PhD at the University of Leeds. Ruth’s study looked at how teenagers can be helped to take on responsibility from their parents for managing their CKD.  

Engaging with teenagers, parents and health professionals

Ruth talked with 49 people from two children’s kidney units – 16 young people aged 13-17 years old with CKD, 13 parents and 20 health professionals. Using interviews and focus groups, Ruth explored how young people take control of their CKD; how parents ‘let go’ of this responsibility; and what support families need as their responsibilities change. 

Parents gradually handing over responsibility to their child, young people developing a routine, so healthcare becomes part of their daily life, and families connecting with others who have CKD, were seen to be helpful. However, Ruth identified that there were different understandings and expectations around when young people should start to become more involved in their care, what is the best approach to take, and who should be involved. For example, some parents encouraged their child to become more involved in their care while at primary school, whereas health professionals did this as part of preparing young people for the transition to adult kidney services, so started when a young person was about 13 years old. These different understandings impact on what young people, parents and health professionals each hope to achieve as young people take control of managing their CKD. 

The findings from the study suggest that families would benefit from health professional support over a longer timeframe that: 

  • integrates young people taking control of managing their CKD with gaining independence in other areas of their lives, such as spending more time with friends  
  • gets a more accurate and holistic picture of a young person’s involvement in their care, by observing how young people ‘do’ the activities that are needed to look after their health, as well as what they ‘know’ about their CKD. 
Dr Ruth Nightingale
Dr Ruth Nightingale

Ruth said: With support from Kidney Research UK, we have been able to identify what helps young people to take increased control of their CKD. This is important, as providing support that meets families’ needs could potentially have a positive impact on young people’s health and wellbeing’. 

Next steps

Young people, parents and health professionals had ideas around what could help families with the handover of responsibility, including more peer support and digital technology to support routines. In future research, Ruth plans to develop and test out these ideas to see if they help young people with becoming independent in managing their CKD, and if they are effective, how they could become part of standard care.  

Kidney Research UK’s public and patient involvement manager, Mae Smith said: “So often I hear how young people find the transition from being a child whose parent manages their kidney disease, to becoming a young adult and managing their own condition, a very difficult and worrying time. This work will provide solutions to allow families and healthcare professionals to better support the young adults through this transition, to empower young adult kidney patients to take control of their condition and reduce anxiety and stress around this. A vital piece of work to protect the wellbeing of these young kidney patients”

To find out more about Ruth’s study, read the published paper here.

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