What support looks like for kidney disease patients
If you’re living with chronic kidney disease, support groups can guide you to accept the new normal and better cope with the challenges of a chronic disease. Support can come from friends, family and peer groups.
A 2015 study by the National University of Malaysia revealed that affectionate social support gave chronic kidney disease (CKD) patients a higher health-related quality of life, and an earlier study conducted by George Washington University in 2013 found that social support, especially from a loving spouse, increased the medical compliance of persons living with CKD and enhanced their survival rate, quality of life and nutritional status, and it also decreased the rate of depression and stress.
Support can take many forms: family, friends, co-workers, spiritual advisers, healthcare workers or community help. There are also support groups specifically tailored to CKD patients, such as the Cape Kidney Association and the National Kidney Foundation of South Africa.
Peer support from family and friends
The most obvious support you can give to someone living with CKD is emotional help.
‘Family support is vital in the patient support programme since it can be devastating when you discover that you have renal failure,’ says Molly Fabe, executive director of the Cape Kidney Association.
Understanding important terminology is the first step to offering emotional support to a loved one struggling to adjust to life with CKD.
Other practical support includes taking a loved one to hospital for their kidney dialysis treatment and either staying with them or fetching them afterwards.
‘It is always good for a family member to understand what the patient is going through and, therefore, it is encouraged that they, too, engage with the nursing staff,’ says Molly.
Employers also need to understand that it’s not always possible for someone suffering from CKD to return to work after dialysis, as they may feel tired. This is an opportunity for educating friends, family and employers about the reality of living with kidney failure.
Compliance with their medical treatment and diet is another way that family and friends can get involved. Food that is high in potassium, such as bananas and potatoes, can be harmful to patients living with CKD, so it’s important that the patient’s support system respect and encourage a balanced and healthy renal diet.
Patient support groups
Kidney disease has been called a silent killer because it can strike anyone at any time. Many people in late-stage renal failure have no symptoms until their disease is far advanced.
Risk factors for kidney disease include diabetes, high blood pressure, age and a family history of kidney disease. While these factors do not guarantee that a person will develop kidney disease, there is a higher risk which is why regular screening is important.
People with diabetes should have regular U&E (urea and electrolyte), creatine and GFR (glomerular filtration rate) measurements.
A CKD diagnosis can be devastating and hard to process. Joining a support group – whether on a virtual platform or in person – has many advantages to the emotional wellbeing of the patient.
Support groups can:
- provide a safe space to talk about their emotions regarding their diagnosis
- give a CKD patient the opportunity to listen to the experiences of other people living with the disease
- share information about coping mechanisms and treatments
- give encouragement, motivation and inspiration
- help a CKD patient feel empowered, connected and understood
The health system in South Africa is composed of both a private and public sector, each with different human and financial resources.
‘Our focus is supporting and offering assistance to disadvantaged kidney patients on renal dialysis at provincial hospitals,’ explains Molly.
Patients with CKD can join a support group through the hospital where they are being treated. Life Renal Dialysis is a specialised healthcare service providing acute and chronic renal dialysis services. Each unit can provide the patient and their family with information about support during their treatment.
‘Support groups can cover a vast range of information, from dietitians to grief sharing,’ says Molly.
Some patients may benefit from joining these targeted groups, while others may prefer to receive support from their private network of friends and family, or religious organisations.
CKD support groups in South Africa
- Cape Kidney Association: a grassroots non-profit organisation that raises funds for indigent kidney patients
- National Kidney Foundation of South Africa (NKFSA): an organisation involved in raising awareness of and education about kidney disease
- Dialysis Support & Talk: brings clinical technologists, doctors and professors together with dialysis patients to support them in their fight against kidney disease
- Diabetes South Africa: provides support to CKD patients because kidney disease is common among people living with diabetes
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