Young adults with chronic kidney disease: An exploration of their relationships and support networks.

Emma Coyne,Heather Langham,Matthew Tomlin,Heather Buchanan,Catherine Johnson,Wendy Hope,Charlotte Bebb,Catherine Byrne

doi:10.1111/jorc.12263

Abstract

Young people with chronic kidney disease (CKD) have a number of key issues and life changes to manage while also possibly transitioning into adult care. During this time, the nature of their support networks including, social, romantic, family and health care relationships, is changing. To explore these young people's experience and perceptions of their past, current and future relationships and support networks. Qualitative study. Fourteen young adults (8 male, 6 female, aged 18-26 years) with CKD Stages 3-5 participated. Semi-structured interviews were conducted in order to explore the relationships (friends, family and partners) of young adults with CKD at two UK NHS hospitals. These were transcribed and thematically analysed. There were four themes identified. 'Disclosure-To tell or not to tell?' identified the challenges young adults face when disclosing their condition to friends and prospective partners. 'Managing support networks' showed that participants appreciated support from other young adults with CKD but also desired just 'being normal' with their friends. While family support is still significant and much appreciated, some young adults also found it harder to develop their independence. 'Relationship strains and carer needs' highlights the impact of CKD on all relationships. Participants were also aware of the needs of their 'carers'. In 'Happy ever after?' young adults expressed concerns about meeting a partner and having children. Young adults with CKD need support in helping them manage new and existing relationships, at a time where relationships are taking on different forms and significance. Moreover, support needs for young adults extend beyond the patient, to those who support them; support services need to reflect this.

Highlights

It is established that young adults with chronic kidney disease (CKD) are a vulnerable group with poor treatment outcomes
Camp Cool (CC) involved ‘therapeutic camping’ with buddy-to-peer support. They found that peer-topeer support was greatly appreciated and beneficial for the attendees and participating in the camp seemed to have a positive influence on self-management of these young people with End Stage Renal Disease (ESRD)
This may relate to Bailey et al’s (2018) key review finding that young people with kidney failure experience difference

Summary

Introduction

It is established that young adults with chronic kidney disease (CKD) are a vulnerable group with poor treatment outcomes. A recent systematic review and meta-analysis (Hamilton et al 2017) established that young people with kidney failure experience a number of adverse psychosocial consequences with lower quality of life and limited employment, independence, and relationships compared with healthy peers They must learn to manage their own health in order to achieve good health outcomes and longer survival. Dealing with the transition from paediatric to adult care is not always managed well which can have adverse health consequences (Watson et al 2011; Tong et al 2013) Exploring further these young adults’ relationships is important as social support can have a significant impact on outcomes such as improved survival, concordance and quality of life (Cohen et al 2007). Our study set out to explore these young people’s experience and perceptions of their past, current and future relationships and support networks

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Conclusion