Your Child & Chronic Kidney Disease 
The impact on the family of the diagnosis of chronic kidney disease can have far reaching effects. Parents often describe the time following their child’s diagnosis as the most difficult time, often with feelings of guilt, anger and sadness. Some parents say that they have benefited from being able to talk to someone at this time. This may be a professional within the renal team, for instance the social worker or clinical psychologist or another parent of a child with renal failure.
Parents are asked to understand complex medical information alongside providing special care at home and to be part of major decision making for their child. This can be a stressful time and partnerships/relationships can be put under strain.
Again it can help to talk this over with the social worker and look at different ways of supporting the family through this phase.
Brothers and sisters may feel neglected and confused. They too need time with their parents to talk over their worries and to feel part of the overall plan. Extended family members can be a good source of support but need time to understand and accept the illness.
The social worker is an important member of the team who will help to prepare and support the child and family throughout all the stages of chronic renal failure treatment. Regular contact either at the clinic or at home will enable families to have their questions answered and worries discussed.
There are many adjustments to be made and individuals react differently. Members of the team can be called on to help with these adjustments and individual solutions to problems may be offered.
The social worker can also advise about state benefits that are available because of your child’s illness. They may also be able to advise and help with travel costs to hospital and arrange applications to other special funds such as the Family Fund and the British Kidney Patients Association.
The social worker may want to involve social services or the voluntary sector in the area where you live to look to them to provide the necessary practical support for your family. The hospital may provide additional help in terms of arranging babysitting, special nurses to provide home care and arranging Parent Groups.
Units may have an Education Department which provides a school room in the hospital for children of school age to keep up with their work. The hospital school teacher will contact the child’s own school if the child is going to spend a lot of time in hospital.
Home tutoring may be arranged if your child has to be at home for a prolonged time.
Many units now provide a special area on the ward for teenagers where they can enjoy their own activities with stereo, video, etc.
NKF Controlled Document No. 176, Your Child & Chronic Kidney Disease — An introductory manual for families — Impact on family life, written 12 June 2004. Last reviewed 3 May 2011.
Content compiled by members of the Children’s Renal & Urology Unit, QMC Campus, Nottingham University Hospitals.
The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.
The National Kidney Federation is registered in England and Wales as a Company limited by guarantee (Company No 5272349) and awarded charitable status (Charity Number 1106735). Give as You Earn contributions No. CAF GY511.
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Page created: 12 June 2004
Last updated: 27 February 2011