Young adults’ perspectives on living with kidney failure: a systematic review and thematic synthesis of qualitative studies
Open accessAbstract
Introduction: Young 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. Design: A 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. Participants: Seven studies from five different countries were included, comprising 123 young adults receiving RRT. Results: Comprehensiveness 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. Conclusions: Across 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.
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The quality of life of patients with ROD is lower than for the general population in three key areas: physical limitations, social isolation and stigmatization, and emotional distress.
“The quality of life of patients with ROD is lower than for the general population in three key areas: physical limitations (movements, pain, sleep problems, attention or concentration problems that affect daily life), [3–9], social isolation and stigmatization [3, 7, 9–13], and emotional distress (anger, depression, anxiety, hopelessness, loss, lack of control, abandonment) [3, 5, 8, 14–17].”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as [10]
The Results (Difference desiring normality) describe barriers to everyday activities, social isolation, and name-calling or bullying among young adults with renal failure. The Discussion (Liminality) reports lower quality of life than healthy peers specifically for young adults with transplants. These passages do not establish the stated comparison for all patients with ROD, and the paper says mental health was underinvestigated rather than substantiating the full list of emotional symptoms. (LLM, conf=0.87)
Experimental — accuracy not yet measuredPatients with ROD experience social isolation and often have difficulty finding a support community because of the rarity of their condition.
“Patients experience social isolation and often have difficulty finding a support community because of the rarity of their condition [3, 10, 11].”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as [10]
The Results section (‘Social isolation and intimate relationships’; page not provided) reports social isolation among young adults with kidney failure. It does not establish this finding specifically for patients with ROD or say that the rarity of a condition makes a support community difficult to find. (LLM, conf=0.85)
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References 39 · Cited by 64
Research works printed but not linked: 1
- [38]Chrysochou C An innovative model for young adult renal care. BJRM 2016; 21: 60– 3.
- Authors
- Bailey, P. K., Hamilton, A. J., Clissold, R. L., Inward, C. D., Caskey, F. J., Ben-Shlomo, Y., & Owen-Smith, A.
- Affiliations
- Population Health Sciences, Bristol Medical School, Bristol, UK
- Southmead Hospital (GB)
- University of Exeter (GB)
- Bristol Royal Hospital for Children (GB)
- North Bristol NHS Trust (GB)
- Venue
- BMJ Open
- Publisher
- BMJ
- Published
- 2018-01
- Volume
- 8
- Issue
- 1
- Pages
- e019926
- ISSN
- 2044-6055 (ISSN-L)
- PMC
- PMC5781019
- OpenAlex
- W2777976890
- Cited by
- 64
- References
- 39
- Citations by year
- 2026: 7 · 2025: 5 · 2024: 6 · 2023: 8 · 2022: 5 · 2021: 12 · 2020: 15 · 2019: 2 · 2018: 4
- FWCI
- 1.41
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by-nc
- Locations
- BMJ Open (publishedVersion, cc-by-nc)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- Royal Devon and Exeter Research Repository (Royal Devon and Exeter) (submittedVersion, cc-by-nc)
- Explore Bristol Research (submittedVersion, cc-by-nc)
- Funders
- Kidney Research UK and Kidney Care UK
- Topics
- Health Sciences › Medicine › Nephrology › Dialysis and Renal Disease Management
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Health Sciences › Medicine › Transplantation › Renal Transplantation Outcomes and Treatments
- Keywords
- young adults, renal failure, renal replacement therapy, psychosocial impact, lived experience, body image, social isolation, career ambition, educational disruption, liminality, chronic disease, kidney transplantation, psychological support
- MeSH terms
- Adolescent, Adult, Career Choice, Chronic Disease, Female, Humans, Interpersonal Relations, Male, Quality of Life, Self Concept, Social Isolation, Renal Replacement Therapy, Qualitative Research, Renal Insufficiency, Young Adult
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