Young adults’ perspectives on living with kidney failure: a systematic review and thematic synthesis of qualitative studies

Abstract

IntroductionYoung adults fare worse than younger adolescents or older adults on a broad range of health indicators. Those with a chronic illness such as renal failure are a particularly vulnerable group, who experience poor outcomes compared with both children and older adults. Understanding how being in receipt of renal replacement therapy (RRT) affects the lives of young adults might help us to better prepare and support these individuals for and on RRT, and improve outcomes. This study aimed to synthesise research describing young adults’ experiences of the psychosocial impact of kidney failure and RRT.DesignA systematic literature review identified qualitative research reporting the perspectives of people aged 16–30 years receiving RRT on the psychosocial impact of renal failure. Electronic databases (including Medline/EMBASE/PsycINFO/ASSIA) were searched to November 2017 for full-text papers. The transparency of reporting of each study was assessed using the Consolidated Criteria for Reporting Qualitative Health Research (COREQ) framework. Quality was assessed using the Critical Appraisal Skills Programme qualitative checklist. An inductive thematic synthesis was undertaken.ParticipantsSeven studies from five different countries were included, comprising 123 young adults receiving RRT.ResultsComprehensiveness of reporting was variable: studies reported 9–22 of the 32 COREQ-checklist items.Three global themes about the impact of kidney failure on young adults were identified: (1) difference desiring normality, (2) thwarted or moderated dreams and ambitions, and (3) uncertainty and liminality. These reflected five organising themes: (1) physical appearance and body image, (2) activity and participation, (3) educational disruption and underachievement, (4) career ambitions and employment difficulties, and (5) social isolation and intimate relationships.ConclusionsAcross different countries and different healthcare settings, young adults on RRT experience difference and liminality, even after transplantation. Tailored social and psychological support is required to allow young adults to experience wellness while in receipt of RRT, and not have life on hold.

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

“…The challenge of establishing and maintaining romantic relationships was evident in the accounts of the participants. Bailey et al (2018) also found that renal failure was highlighted as having a significant impact on young people's confidence in pursuing, establishing and maintaining intimate relationships. Similar to our findings, they report that participants across several studies reported rejection by a partner because of their renal disease.…”

“…Similar to our findings, they report that participants across several studies reported rejection by a partner because of their renal disease. Bailey et al (2018) highlight the role that social media, dating apps and online resources may have for those individuals who might want to establish a relationship before meeting in person which may be a fruitful avenue for young people who may often use online resources regularly anyway.…”

“…Fertility and future reproduction were highlighted by participants as key challenges. Bailey et al (2018) also found the themes of fertility and parenthood within studies included in their review, with an associated myriad of concerns. All of our young adults, and particularly young women, had information needs in relation to this topic with few reports of asking health professionals for advice and support.…”

“…This may be due to 'over-identification' whereby a subculture is created during the camp in which the young people perceive themselves as being different from others. This may relate to Bailey et al's (2018) key review finding that young people with kidney failure experience difference. Therefore, it may also be helpful to foster efforts to help these young people establish (and maintain) relationships with individuals/groups without CKD within their everyday lives.…”

“…However, 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). Bailey et al (2018) have argued that we need to understand how renal failure affects all aspects of young adult's lives as this may help us to better prepare and support these young people before and during treatment, and improve outcomes. They conducted a systematic review and thematic synthesis of studies on research describing young adults' experiences of the psychosocial impact of kidney failure and renal replacement therapy (RRT).…”