Perspectives on life participation by young adults with chronic kidney disease: an interview study

Abstract

ObjectiveTo describe the perspectives on life participation by young adults with childhood-onset chronic kidney disease (CKD).DesignSemi-structured interviews; thematic analysis.SettingMultiple centres across six countries (Australia, Canada, India, UK, USA and New Zealand).ParticipantsThirty young adults aged 18 to 35 years diagnosed with CKD during childhood.ResultsWe identified six themes: struggling with daily restrictions (debilitating symptoms and side effects, giving up valued activities, impossible to attend school and work, trapped in a medicalised life, overprotected by adults and cautious to avoid health risks); lagging and falling behind (delayed independence, failing to keep up with peers and socially inept); defeated and hopeless (incapacitated by worry, an uncertain and bleak future, unworthy of relationships and low self-esteem and shame); reorienting plans and goals (focussing on the day-to-day, planning parenthood and forward and flexible planning); immersing oneself in normal activities (refusing to miss out, finding enjoyment, determined to do what peers do and being present at social events); and striving to reach potential and seizing opportunities (encouragement from others, motivated by the illness, establishing new career goals and grateful for opportunities).ConclusionsYoung adults encounter lifestyle limitations and missed school and social opportunities as a consequence of developing CKD during childhood and as a consequence lack confidence and social skills, are uncertain of the future, and feel vulnerable. Some re-adjust their goals and become more determined to participate in ‘normal’ activities to avoid missing out. Strategies are needed to improve life participation in young adult ‘graduates’ of childhood CKD and thereby strengthen their mental and social well-being and enhance their overall health.

Depression and Associated Factors in Chinese Patients With Chronic Kidney Disease Without Dialysis: A Cross-Sectional Study

“…However, living with chronic diseases might lower patients' self-esteem (30). As their disease progresses, CKD patients may experience lower self-esteem as a result of anxiety and feelings of desperation regarding their prognosis and the effectiveness of treatments, which can lead to depression (31). In a survey among 109 CKD patients at stage 4 or 5, lower selfesteem was found to be associated with higher illness perception (32), and higher risk of depression in young adults with endstage CKD (33).…”

The Voices of Black South African Men on Renal Dialysis at a Tertiary Hospital: A Phenomenological Inquiry

“…For younger men, future sustainability of their identities and livelihoods is equally not promising because some of them are forced out of school or work ( Sauvé et al, 2016 ). Considerably, the condition appears to impact negatively on a majority of the affected men’s virility ( Achempim-Ansong & Donkor, 2012 ; Kerklaan et al, 2020 ; Lin et al, 2005 ; Reid et al, 2016 ). Loss of virility taken together with failure to be a provider diminish affected men’s sense of manhood, therefore, triggering an existential crisis ( Bailey et al, 2018 ; Douglas & Maluleke, 2018 ; Khunou, 2013 ; Siweya et al, 2018 ).…”

“…The existential crisis is secondary to threatened masculinity ( Higuera, 2018 ), expresses itself in intimate relationships. For young men in particular, it appears that they struggle with self-image ( Bailey et al, 2018 ; Kerklaan et al, 2020 ) when compared to older men. This is because the disease impacts on the integrity of their physical health and bodies ( Kerklaan et al, 2020 ).…”

“…For young men in particular, it appears that they struggle with self-image ( Bailey et al, 2018 ; Kerklaan et al, 2020 ) when compared to older men. This is because the disease impacts on the integrity of their physical health and bodies ( Kerklaan et al, 2020 ). To protect their threatened or troubled selves including the fear of rejection, ridicule or even stigmatization ( Coyne et al, 2019 ), some young men opt to keep the illness a secret while others become self-absorbed and avoid intimate relationships ( Diaz-Medina & Mercado-Martinez, 2019 ).…”

“…Unfortunately, men who are on renal dialysis often struggle to live up to the cultural standards of a “real man” suggesting that mental health problems may ensue ( Chironda & Bhengu, 2019 ). For instance, compromised masculinity secondary to poor sexual performance and diminished social roles are commonplace in men on ESDR ( Burns & Mahalik, 2008 ; Diaz-Medina, & Mercado-Martinez, 2019 ; Kerklaan, et al, 2020 ; Rees et al, 2018 ). While there exists a number of studies on the impact of ESRD on African American men in the United States of America, including diminished masculinity ( Burns & Mahalik, 2008 ; Evans et al., 2011 ; Golestaneh et al, 2021 ; Sanders, 2020 ), very few such investigations have been on men in the African continent ( Agaba et al, 2017 ; Govender, 2012 ).…”