A recent article in the American Journal of Kidney Diseases by Tong and colleagues examines how young people with chronic kidney disease (CKD) experience and perceive living with a chronic illness. The authors explore the impact of CKD on the daily lives of young people. Using qualitative methods, Tong et al analyzed semi-structured interviews and journal entries of 27 patients, non-dialysis and dialysis dependent, aged 12-24 years old. Corresponding author Dr. Allison Tong (AT) discusses this article with Dr. Jane Schell (eAJKD), guest contributor.
eAJKD: What prompted your interest in the experiences and perspectives of young patients with CKD?
AT: It is well known that CKD imposes a profound burden on adolescents and young adults. In the absence of a therapeutic cure for CKD, improving quality of life, service delivery, and treatment outcomes are key priorities. With this in mind, I wanted to gain a depth and breadth of understanding about living with CKD from their perspective. In particular, I was interested in drawing out issues, concerns, and anxieties that often remain undisclosed to clinicians and even family members. My hope was this would provide insight into their beliefs and preferences, as well as the psychosocial aspects underpinning behavioural challenges faced in clinical care, including treatment adherence. Also, this can inform strategies and interventions to improve health and quality of life outcomes for young patients with CKD.
eAJKD: Can you explain to us the advantages of using qualitative research for this particular study?
AT: The growing recognition and use of qualitative research methods in nephrology is encouraging. In this study, we use a qualitative approach to gain insight into the complex psychosocial challenges that adolescents and young people may not raise in a clinical setting. It gives subjects the opportunity to openly share their personal stories, experiences, beliefs, and perspectives about living with CKD.
eAJKD: This study was unique in its use of journal entries in addition to semi-structured interviews. Can you tell us why you chose the addition of journaling, and how this influenced thematic results?
AT: Young people express themselves in different ways. Some prefer to share their views and experiences in writing rather than talking in a research interview. We found the journaling activity (which was completed either in a notebook or online) provided another avenue in which participants could express their views. Interestingly, the majority who completed the journal elected to use the notebook rather than the online journal website. The journals added breadth and depth to the thematic synthesis. A number of participants disclosed their experiences, perspectives, and emotions in more depth in their journal than during the interview.
eAJKD: Did any themes or subthemes emerge that surprised you and your colleagues?
AT: Yes, there were a number of themes that were surprising. Young patients had a profound sense of inferiority, particularly in terms of failing the expectations of others and themselves. Many felt guilty, and perceived themselves to be a burden on their family to the extent of “hiding” their disease by choosing not to take their medicines and avoiding clinic appointments. Others had unspoken reservations about accepting a kidney from their parent or sibling. Also, many were frustrated about the prognostic uncertainty, not knowing what the future held for them, and how it would be affected by dialysis or transplantation.
eAJKD: Can you discuss similarities and differences between your patients’ experiences as compared to adults living with CKD?
AT: The coping strategies (self-efficacy, focusing on normality, and reserved optimism) that young people had with regards to CKD and treatment seem similar to those reported in the adult population. However, the younger population felt their experience with CKD and dialysis made them strong mentally and more mature compared to peers their own age.
Having a sense of worthlessness and believing that they had failed the social expectations of their parents, peers, and themselves appears to be more acute in the younger patient population. They were worried about being able to find a partner, starting their own family, and having limited career opportunities. CKD was perceived to unfairly “rob” them of opportunities and ability to reach their potential.
In the younger population, living kidney donation is generally preferred if the donor and recipient are deemed suitable. However, some participants had unexpressed anxieties about the possible harms and risks to the donor, and potential tension in the donor-recipient relationship, which they had not previously disclosed to their clinicians or family.
eAJKD: Ninety percent of patients approached agreed to participate in the study. Did you get the sense that talking about their experience and perspectives had some therapeutic benefit?
AT: Yes, in most cases they appear to derive some therapeutic gains from participating in the interview. The following is a quotation from one of the journals written by a young woman on dialysis: “Today I met with [researcher] for an interview about kids with kidney disease. It was quite nerve racking. As I was talking I felt like a weight had been lifted off me. It felt good to talk about such things with someone who was willing to listen.”
eAJKD: Your data highlight the need for interventions to improve adjustment and foster positive characteristics such as self-efficacy, autonomy, and empowerment. Did the participants identify interventions or strategies from their own experience that helped foster these positive characteristics?
AT: Some of the older participants on home hemodialysis appreciated the independence and flexibility of this modality. They appreciated the training and support which promoted self-efficacy and confidence in managing the dialysis machine. Due to resource constraints, home hemodialysis is not available for pediatric patients. However, data suggests that home hemodialysis may promote empowerment and independence for suitable patients receiving care in pediatric renal units.
eAJKD: How can practicing nephrologists better care for the psychological well-being of adolescents and young adults with CKD?
AT: The findings have implications for physician-patient communication. Adolescents and young adults, particularly those recently diagnosed, can experience overwhelming fears about CKD. Nephrologists can identify the individual patient’s concerns, and work with them to develop a self-management plan with strategies to integrate CKD and its treatment into their daily living. Also, some participants expressed strong anxieties about transplantation. We suggest that open discussion and shared decision-making with regards to transplantation may help address these concerns. Nephrologists can also facilitate access to various interdisciplinary resources in both the hospital and community settings, including educational and vocational support, peer support groups, and counselling services. To improve self-efficacy and autonomy, and the ability of adolescents and young adults to engage in education, work, and social opportunities, we suggest that home hemodialysis be made available for suitable patients receiving care in pediatric clinics.
eAJKD: How will the results from this study drive your future research work?
AT: The findings can inform the development and evaluation of clinical, psychosocial, or educational interventions that address the needs, concerns, and preferences of young people with CKD as identified in this study. Also, the findings may be useful for developing clinical tools to assess quality of life domains that adolescents and young adults believe are important in CKD.