Chronic illness of any kind in children is very difficult for both parents and children. Children are supposed to be healthy and happy, to enjoy life and plan for the future. When a child is given a diagnosis of kidney disease, parents are quick to ask some of these questions:
“Why?” “Why?” “Why?” “How could this have been prevented?” “What do we do about it?” “What did I do wrong?” “Why didn’t it show up sooner?” “What will his/her life be like?” “Why can’t it be me?” “How do I tell him/her?” “What do I tell him/her?”
A first step in preparing your child to accept and learn about the kidney disease or condition is for you the parent to accept and learn about it. How can you expect a child to understand what you yourself cannot deal with?
Kidney disease can be acute or chronic. With certain diseases, the child may experience remissions and relapses (the problem improves almost back to normal, then the problem can worsen). Some conditions can be cured, whilst others become chronic and may worsen over time, possibly leading to end-stage kidney disease, requiring dialysis or a transplant to live. Kidney disease in children may result from congenital anomalies or disorders that occurred early in the fetal developmental stages, possibly before the mother even knew she was pregnant or from birth injuries. Some structural defects may be corrected or improved by surgery. Kidney disorders also may develop as a result of hereditary conditions present at birth, become apparent in early childhood or not show up until years later. Infections, high blood pressure, medications in toxic doses and many other diseases may also damage the kidneys. Glomerulonephritis includes a group of conditions in which the kidneys are damaged by the body’s own immune system.
Whatever the condition or disease, whenever it develops and regardless of how many people have kidney disease, when it is your own child, nothing else matters. Initially, your entire focus is on your child and family.
How do parents react to this diagnosis?
Reactions vary and include:
* Anger and blame – at nurses, doctors, God, the spouse, other family members and even the child.
* Denial – “They are wrong, this cannot be, it’s just the flu or food poisoning or an allergy or stress at school.” “Let’s try herbs and diet” or “let’s wait until summer to do the biopsy and maybe the problem will get better on its own.” Parents may get a second or third or fourth opinion, which in some cases may delay treatment, or parents may refuse to return to the doctor thinking, “If we don’t think about it, the problem will go away.”
* Anxiety – Parents’ anxieties are related to the overwhelming news and care required, tests required for diagnosis, procedures to be learned, medications, financial considerations and the need to spend time with other children. “I just learned my child has kidney failure. Now I have to give her eight different medications every day, learn to give her anaemia shots twice a week, take her blood pressure and heart rate every day. My baby is only six-months-old. How am I going to do all this with three other children at home?”
* Extreme sadness and depression – Parents often feel alone, isolated, overwhelmed and are unable to sleep or eat. Family members, not knowing what to say, may withdraw from the child and family.
* Guilt – Questions such as, “Why can’t this be me?” or “What did I do to cause this?” are often asked by parents. Guilt is a common and non-helpful response by parents.
* Bargaining – “I’ll do anything, God, if you heal my child.”
ALL these initial responses are appropriate. This is how we handle our grief. Parents desire good health for their children. Loss of health to disease or disability has to be grieved, similar to grieving a death. Sadness is to be expected. Parents are ‘fix-it’ people for their children. When we can’t fix things, like restoring good health, it leaves us frustrated and angry. The entire family is affected by kidney disease of a member and each member has to work through the grief in his own way. Grieving is a process. Don’t let anyone tell you it happens overnight. Grief comes from the Latin word gravis, which means heavy. The French have a similar word meaning heavy with sorrow. Grief is a common reaction to loss. Grief is a universal emotion. People all over the world grieve, but our grieving is individual; we all handle it differently. A period of mourning occurs for the loss.
Dr. Elisabeth Kubler-Ross is a world-famous author and speaker on the subject of grief. She identified five stages: denial, anger, bargaining, depression and acceptance (Kubler-Ross, 1969). Loss of health and acceptance of the illness and treatment may follow the classic grieving stages to some degree. Like the weaving of a never-ending tapestry full of many threads bright and dark, the process from grieving to acceptance of the kidney disease and the required treatments, is a journey that continues through valleys and hills, with rainbows and rain. Don’t try to make it alone. Let others help.
Acceptance is a time of coming to terms with what is real – and what is not going away. “Yes, my child has a kidney disease that will alter his/her life, and will eventually result in his/her needing dialysis and a kidney transplant.” “How can I help him/her get through life? – through school? – prepare for a career?” Feelings of helplessness, anxiety, sadness and guilt, as well as increased financial responsibilities place considerable stress on a marriage and family. Tension at home may spill over to affect the child and siblings. Siblings may act out their anxieties and fears in negative ways to regain attention that has been directed more toward the child with kidney disease. They may fear that the same thing can happen to them as well.
Management of the child’s kidney disease may require frequent trips to the hospital and clinic (some planned – some unplanned), painful procedures related to tests or treatment, surgeries, injections and many medications. The term chronic sorrow has been used to describe feelings about the ups and downs of long-term care. Some wise strategies for coping are summarised in an excellent book, Healing and the Grief Process (Roach & Nieto, 1997):
* Identify ways to deal with the anger, sadness, guilt and depression without damaging family relations. This is so important. Blaming yourself or another family member, especially the other parent, doesn’t help the situation. Encouraging one another to talk out the feelings to other family members, a friend, minister or professional counsellor, may be a great help.
* Role-play difficult situations. Children are great at pretend play, and if you watch, you may learn what they are thinking and feeling that cannot easily be expressed in words. This is a good strategy to help siblings cope with the child’s condition. Encourage exploring of these feelings. A medical kit and dolls or stuffed animals can provide therapeutic outlets for unpleasant procedures. Most children love to give a ‘pretend shot’ to someone, especially the nurse for payback.
* Realistically identify abilities and limitations – of both the child and the parents. The child with a kidney transplant is not likely to be the star quarterback for his favourite professional team, nor can the mother be a full-time supermum, super-employee, super-soccer coach, super-chef, with an always-immaculate house. However, be cautious in setting or ‘assuming’ limitations. People with chronic illnesses or disabilities have achieved great things. Whilst you want to expect miracles (and they do occur), try to set realistic goals.
* Capitalise on strengths – Again, this applies to the entire family. Maybe the mother is the strong person to assist with some of the difficult treatment routines and the father is better at maintaining inventory of peritoneal dialysis supplies. Try to share the workload. The child with kidney disease, as any other child, should be encouraged to excel in what he/she CAN do, rather than focusing on what he/she CANNOT do. Dietary restrictions can be helped by creative food preparation and serving, with the family eating similar food when possible, rather than dwelling on what the child cannot have.
* Explore ways to enhance self-esteem. Just as above, focus on the positive and minimise the negative. Brittany plays violin and piano. Tiffany and Sara sing beautifully. Their love of music, like art, is a wonderful creative outlet to be encouraged. Whilst children with kidney disease may not compete with other classmates in sports (but some do), it is important to encourage expressive hobbies and talents to raise their self-esteem and enjoyment of life.
* Identify recreational activities for the family. If your child has just been diagnosed with kidney failure, this is not the year to climb that mountain you dreamed about, but you can go camping or to the beach (with sunscreen). Dialysis arrangements can be made at paediatric centres to allow travel. Peritoneal dialysis equipment is portable for travel, and most companies will ship supplies for you. Regular physical exercise is important for all of us, and the more fun it is the more likely we are to continue it. Having kidney disease should not eliminate exercise – find activities that are acceptable. It is well documented that exercise helps reduce fatigue and stress, and, actually energises. Parents must hear this message. The child and siblings or friends can be encouraged to put on plays for family entertainment. Playing board games together can be a great family activity, especially if the child has physical limitations.
* Learn stress-reducing activities, in addition to exercise. Take time for yourself. Rest, relaxation and diversional activities for parents are important. Sometimes this may not seem possible, but remember that it is important for mental and emotional health. Find a friend, relative or babysitter to provide respite care for a while. It is hard to give of yourself if you feel ‘given out’. Consider a support group of other parents of children with chronic conditions, not just kidney disease. There are similarities, especially with caregiver responsibilities and needs. Join a peer group in the community or at church for conversation and fun. Don’t feel guilty for taking a little special time for yourself. You have earned it.
* Learn about kidney disease, treatments, medications and expectations of therapy. Obtain literature from your paediatric nephrology centre or hospital, public library, professional foundations and authorities. You can find almost anything on the Internet if you have computer access, and there is always the public library for that. Be cautious in what you read from the Internet – make sure that the source is reliable. Don’t hesitate to ask questions of your medical team, who are there to serve you. Talk with other parents and patients who have walked where you are now – learning about kidney disease in your child.
* Laughter and humour are two wonderful qualities I would add to this list. If we can lighten a serious situation with humour, a funny joke or cartoon, it goes a long way toward relieving some of the stress and restoring good relationships. Try to find something funny in a situation. I recommend reading the book Anatomy of an Illness by Dr. Norman Cousins and seeing the movie, Patch Adams. It may change your way of thinking. Children learn to laugh before they learn to complain. I have been told it takes fewer facial muscles to smile than to frown. Whilst I’m not sure about that, I do know smiling definitely feels better.
Now that we have talked about how to first deal with yourself, let’s turn our attention to your child. It is our nature as parents to want to nurture and protect our children, especially when they are sick. That is all right some of the time, but children tend to regress a bit when they are ill. Children who have previously been toilet trained will start having ‘accidents’ possibly requiring nappies. The parent of a child with a chronic illness must be careful not to allow the child to become stuck in the regression mode. The ‘chronic’ in chronic kidney disease means long term. It is not going away, yet life and expected childhood development must go on. Your child may need encouragement to go to school, to play with friends, to engage in physical activities and to be independent.
Don’t make the mistake that your child will always be pleasant and polite and thank the nurses for giving him shots! He/she is trapped and cannot get away from this situation. So, who is right there all the time to get the brunt of his/her anger but you? It is normal for a child to feel anger at what is being done to him/her. He/she may not be able to understand if you love him/her why you let bad things happen. Try to understand what your child may be feeling and what his/her fears are. Your love and comfort are necessary, as is your discipline.
Medication must be taken; procedures must be performed – they are not options. However, there can be choices, such as “Do you want to take your medicine with milk or juice?” or “Do you want to change the dressing at the start or at the end of your dialysis treatment?” Let your child participate in his/her care whenever and however possible, which helps him/her to accept what he/she does not want. Whilst your mothering instinct is to do things for him/her (it lets you feel helpful), he/she needs to be encouraged to become as independent (with supervision, of course) and self-reliant as possible. An adolescent response frequently heard is “My parents treat me like a baby”. One of the goals of a parent is to teach the child throughout life to eventually become independent (for which parents are rarely ready!).
By Judy Taylor, MPH, BSN, RN, CNN – a Paediatric Renal Transplant Co-ordinator at the University of South Florida in Tampa, Florida. She also serves as a member of the AAKP Board of Directors.
This article is courtesy of the American Association of Kidney Patients USA.
Disclaimer: Articles are general comment, not advice. The information is believed to be accurate and reliable, but no responsibility is taken for any opinions expressed or for errors and omission. Readers should never act on the basis of the material without taking professional medical advice relating to their particular personal circumstances.