Role of the Family Resource
Parents are often the best observers of their children and can provide valuable insights into the problems and solutions involving the care of children. For children and youth with special healthcare needs (CYSHCN), parents are often uniquely skilled to care for their children. Often, parents are more familiar with their child’s illness than their health provider. They have often researched the illness, talked with other families with similar illnesses and know the latest details of controversies and treatments. Thus it is important for healthcare providers to acknowledge the parent’s experience with their child. It is even more important to include families in the decision making process and to ask them about their needs and capabilities. It can also be helpful to connect families with similar illnesses with one another. Families within a practice can often support one another and share the resources that they have discovered. This type of collaboration can be a morale booster for many families caring for a child with chronic illness.
Stressors on a family
Having a child with special healthcare needs can also be very stressful for families. CYSHCN may require extensive daily care and this often puts a strain on the family structure. Many studies have examined the impact of having a child with chronic illness on the family. A higher divorce rate is noted in families of CYSHCN: the strain of caring for a child with chronic illness often disrupts the parent’s relationship and can cause anger, blame, and stress. Also, families of CYSHCN may have extra financial burdens: one parent may be unable to work due to the needs of the child and the cost of medical care often exceeds that covered by insurance. Chronic illness also impacts the siblings, who are often forced into caretaker roles at early ages and asked to “help out” more than their cohorts. They also, at times, feel ignored by their parents whose time is often required by the child who is chronically ill. These siblings subsequently are more likely to have emotional and behavioral problems and are often found to have “psychosomatic” illnesses in order to get attention from their parents. Being aware of these stressors is essential to providing care for families of CYSHCN in the most sensitive and helpful way.
Coping with chronic illness over time
For CYSHCN, the needed coping skills change as they grow and develop. Early in life, the impact might not be as great on the children because they may not know what life might be like without their illness. As the child enters school and spends more time with other children, he or she may be teased or bullied and made to feel “different.” Children may become more resistant to treatment or non-compliant with their medications in an effort to not stand out amongst their peers. Health care providers must be sensitive to these issues as we approach their care and give support to the patient and the family. See the Pediatrician’s Role resource [HL) for more suggestions about the practitioner’s role in helping families to cope.
Transition to adulthood
The transition out of the pediatrician’s care to the care of an adult-focused physician is often one of the hardest things for families of children with chronic illness. Families and patients are often concerned about leaving the care of someone who “knew them since birth” and having to identify a different doctor. Thus, pediatricians need to begin the dicussion about the transition early in an adolescent’s care. If capable, teens should be empowered to take responsibility for their own medications and play an active role in communication with the pediatrician (e.g. giving their history, discussing medications) for several years before the transition is to occur. Teens also should participate in decision making even before they reach legal adult age. The organization, Healthy and Ready to Work can assist teens and families in the transition from pediatric to adult life and health care.
For more information about the role of the family:
www.familyvoices.org
www.championsforprogress.org