By Maya Doyle, LCSW

Being a parent is a challenge. Being a parent of a child with a serious and chronic illness such as kidney disease is an even bigger challenge. Families can easily feel as if their world is out of control, or that control is in the hands of others, even well-meaning others like their health care team. Making the unique adjustments that a chronic illness requires while still maintaining the normal rules and routines of the family can make all the difference. Whether diagnosed with early-stage chronic kidney disease (CKD), on dialysis or post transplant, families and children must find a way to blend the medical condition into their lives, paying constant attention while also giving priority to the other needs of a growing child.

Become a knowledgeable and active participant in your child’s care. In addition to speaking with “experts” in your child’s life (doctors, nurses, nutritionists, social workers, pharmacists, child life specialists, psychologists, teachers, etc.), seek out all the information you can about your child’s specific medical condition. There are many organizations that can provide general and disease-specific information (click here for important Web Site links)and many hospitals, especially children’s hospitals, provide a library or resource room for parents.

If you find new information, bring it back to your health care team to verify if it is accurate, and if it is applicable to your child. If you disagree with or do not understand a treatment plan, be clear and direct with your health care team about your concerns and questions. If you can build a relationship of trust and cooperation with the staff caring for your child, you will help your child know there is a network of support for them and for your family. Seeking second opinions and changing health care providers is at times a necessary step in being in control of your child’s illness, but if you find yourself “at war” with your team or with a specific provider, try to identify what you are clashing over and find someone to mediate the disagreement.

Attending support groups, joining an organization, or using online message boards can also connect families to others who are dealing with similar concerns and questions. It can also give families an opportunity to have a voice and advocate for needed resources and research about their child’s diagnosis and treatment. If you and your child are “veterans,” take the opportunity to reach out to a family newly affected – it will give you a boost of confidence and a chance to look back and say “we tackled this!”

Taking medications and following a prescribed diet can result in real power struggles between a parent and child. A matter-of-fact attitude, backed up with accurate information, can help your child understand why they must take meds or avoid certain foods. When you can give options, keep them clear – meds with apple juice, or cranberry? Swallowed whole, or crushed and mixed with apple sauce? If no, grilled cheese sandwich, turkey or tuna instead? Occasional treats and positive reinforcement are OK, such as “good job taking your binders this week,” but do not get in the habit of bribery. You may feel sympathy, sadness and frustration on behalf of your child, but if you do something for your child who is ill that you wouldn’t do otherwise, or bend the rules for one child but not to their brothers and sisters, you may find yourself with a list of unsatisfiable demands and a family out of balance.

Create routines so medication time is just another part of the day (brush teeth, eat breakfast, take medicines). If food choices can be made for the whole family, such as cooking with less salt or reducing salty or sugary snacks, rather than one child eating differently, it may help the whole family get into healthy habits. If swallowing pills is difficult for your child, talk with your health care team about other administration options (chewable pills, liquid given through medication syringe or even through g-tube), and see if your nurse or nutritionist can give your child some tips on swallowing. You can also help your child “practice” swallowing by using sprinkles, mini M&M’s or Tic-Tacs. Your doctor can also add special flavoring, such as FLAVORx, to some liquid medications as part of the prescription (make sure you ask), and taking with certain foods or beverages can make bad-tasting medicines more tolerable. And there may be a simple solution – especially for children who are fluid-restricted, a refreshing glass of cold water may be the best way to get through medication time.

My favorite things.Many children, especially toddlers and early school-age children, may have a favorite object (doll, toy or blanket) they find especially comforting. If your child is frequently hospitalized or in an outpatient setting, you probably already know to bring “blankie” or “bobo” or Elmo along! Even teenagers may have something special that keeps their spirits up they like to keep nearby. For older children, an “activity bag” with books, games, music, etc., can help pass the time and provide a sense of routine (and some might find it the perfect time for homework). If your health care team or children’s hospital has child life specialists, reach out for their advice and intervention, especially if your child is being prepared for a medical procedure involving anesthesia or surgery. Knowing what to expect and planning ways to be calm and cope with discomfort can help your child feel more in control of what is happening. Even children who seem mature and are used to being around adults can “regress” when confronted by pain or fear.

Parents must find ways to be supportive without making unrealistic promises, such as “no more needles,” or giving in to anger or hopelessness. Such feelings need to be expressed, but when, where and to whom? How visible, or invisible, should the stresses of caring for a child with a chronic illness be – to the child, family, friends or health care team? Families make choices based on their beliefs about illness, values, support network and resources available and not available to them. Asking questions, both practical ones – What’s out there? What haven’t we tried? How have other families coped with this? – as well as big ones – Why me? Why us? Why our child? – are vitally important, though not always easily answered.

Your child should understand the basics of their diagnosis and treatments, so as they grow, they can become increasingly independent in caring for themselves, and have a sense of control over their own bodies like a healthy child. Honesty really matters – most children will sense if they are not getting the whole story, and someone is bound to spill the beans. Siblings need straight-forward and clear explanations too, especially if their brother or sister is frequently hospitalized or requires a great deal of their parents’ attention. They also need some time for themselves with parents, though it may seem hard to find the energy or time.

It is also important for adults to take some time for themselves – for relaxation, respite and reconnection with their partner. For many couples, the stress of caring for an ill child can be devastating to the relationship, as roles change, resources are strained, or one parent becomes the “primary” caregiver (and as health care providers focus on “mommy,” even when we should know better!). Attending appointments together or taking turns at care giving tasks or doctor’s visits can help partners share the load (and prevent one parent from becoming the translator for the health care team). For single parents (truly, for any parent), it may help to find a trusted family member or friend who can, at the very least, “hear” your child’s medical information with you (be sure to discuss confidentiality issues with your team and let them know who this “special person” is). Figure out which tasks you can delegate to friends and relatives who “want to help” or what tasks can be occasionally skipped. Individual and family counseling may help with day-to-day realities of family life impacting how well a family can cope with an illness. Ask your health care team for a referral. Many other support systems, such as extended family, friends, religious community, neighborhood or town, are also there to give families what they need to get by and to thrive. Write lists, draw maps, make phone calls and get online until you find a balance that works for you, your child and your family.

Maya Doyle, LCSW, is the pediatric renal social worker at the Children’s Hospital at Montefiore, and is the social work/admissions coordinator for the Ruth Gottscho Dialysis and Children’s Kidney Program at Frost Valley YMCA. For more information, click here or e-mail her at mdoyle@montefiore.org.

This article originally appeared in the January 2006 issue of aakpRENALIFE, Vol. 21, No. 4.

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