The ability of chronic kidney disease (CKD) patients to self-manage with support from caregivers and providers, can help slow or delay disease progression; improve health outcomes; and improve quality of life. Unfortunately, there is limited information available regarding self-management support, especially for patients who are not yet receiving renal replacement therapy. 

A Canadian study, published in the American Journal of Kidney Diseases in October 2019, was conducted to help close that knowledge gap by identifying the self-management support needs—interventions, services, and resources—of adult CKD patients and their caregivers.*

What they did

The descriptive qualitative study involved a total of 48 participants (33 patients and 15 caregivers). The participants were all English-speaking, came from both urban and rural locations across Canada, and were primarily:

• Female (62%) 
• Younger than 75 (79%)  
• White (67%)
• Married

CKD stages 2 through 5 were represented approximately equally among the patients.

In a combination of 90-minute focus groups and 60-minute telephone interviews, the researchers asked participants to respond to questions concerning: 

• Their experiences managing CKD
• What they considered important for support self-management 
• How they used self-management strategies provided by healthcare providers (HCPs) to manage their CKD

What they found

The data revealed three main themes concerning the participants’ CKD self-management support needs. 

These three themes were:

1. Empowerment through knowledge
2. Activation through information-sharing
3. Tangible supports for the health journey

Each of these themes consists of several components as detailed below.

Empowerment through knowledge 

• Awareness of and understanding CKD, particularly its seriousness even when asymptomatic
• Diet challenges, especially in terms of balancing kidney and diabetes diets
• Medication and alternative treatments
• Attuning to the body, or knowing what symptoms and signals to look for at each stage
• Financial implications, especially regarding medications and healthy lifestyle efforts
• Mental and physical health consequences
• Travel and transportation restrictions
• Maintaining work and school

Activation through information sharing

• Access to information
• Meaningful and relevant information, tailored to the specific patient
• Timing of information, especially not being bombarded upon diagnosis
• Amount of information

Tangible supports for the health journey

• Support provided by family and community, including peer group support
• Support provided by professionals, with special regard to answering questions as thoroughly as possible using appropriate and accessible language

What it means

Self-management comprises several challenging, complex tasks that require:

• Developing knowledge, skills, and confidence 
• Identifying and accessing resources and supports 
• Learning to cope with the realities of the condition

Participants were aware of the individual factors that influence self-management, including: 

• Psychological state (e.g., denial and emotional overwhelm)
• Clinical presentation (e.g., absence or presence of symptoms)
• The healthcare system (e.g., access to resources)

This study suggests that a combination of increased internal awareness and multidisciplinary external supports may help future self-management initiatives better meet the needs of both patients and caregivers.

*Donald, M., Beanlands, H., Straus, S., Ronksley, P., et al. (2019, Apr. 2). Identifying Needs for Self-Management Interventions for Adults with CKD and Their Caregivers: A Qualitative Study. American Journal of Kidney Diseases. https://www.ajkd.org/article/S0272-6386(19)30163-5/fulltext