All families, with or without the experience of a child with chronic illness, encounter routine difficulties: finances, sibling relationships, child care, parenting and marital stress, the handling of developmental milestones in their children — all while trying to maintain a normal social life.
When a child has a chronic illness, all of the normal tasks of parents and families can be affected.
Increased Time Devoted to Help Children Cope
Generally, when a child has a chronic illness, one or both parents must increase the attention and time devoted to helping that child cope effectively with his or her illness. These tasks include making sure children take medications promptly and with proper technique; for school-age children, ensuring that they maintain their studies as best they can; and for younger children, fostering stimulating activities and interactions with other children despite their illness.
Frequently, parents faced with a chronically ill child feel increased confusion as to whether they should continue to discipline the child as they would their other children, or as they do when the illness is under control.
Often, the time the parents devote to the chronically ill child takes them away from their other, healthier children. This can contribute to sibling conflict, attention-seeking behaviors of the healthy children, disagreements between the parents in their approaches to parenting, and lack of quality "fun time" for all family members.
Financial Costs and Interruption of Normal Family Life
The cost of medications, routine doctor visits, emergency room visits and hospitalizations often can be enormous. Dealing with insurance companies regarding coverage benefits is usually extremely stressful for the parents. Increased tension between parents and health care providers can occur.
Planning for family outings, children's overnights, or the ability for parents to go out without their children is often disrupted. Often babysitters or day care cannot be accessed easily, either because the parents are concerned with untrained caretakers taking responsibility for the ill child, or because the caretakers themselves are uneasy with routine medication giving or the potential for emergency situations.
These roadblocks to normal family life understandably contribute to increased frustration and even to conflict that further intensifies an already pressured atmosphere.
Feelings of Guilt
Often, chronically ill children or their parents feel guilty at the existence of this chronic illness. Ill children often feel responsible for the increased financial burden to the family or for the disruption in their planned activities. This further stress may contribute to the child's avoidance of good self-care of the illness, such as not taking medications as prescribed, denying symptoms or not seeking proper medical attention promptly. The child's "well meaning" behaviors to reduce expenses and stress unfortunately further stress the families, often making the medical status and the financial burden worse in the end.
For chronically ill children, these increased stressors can make their physical symptoms worse and in some instances actually trigger them. Examples of unhappy contributors to the children's various emotional reactions are: fear about future symptoms, severe steroid side effects, not being allowed to have pets, missing peer activities and recess, extended school absences or a limited diet. Despair and hopelessness in families and children may therefore develop as a result of chronic illness.
Remedies to Reduce Impact on the Family
There are several helpful interventions for reducing the impact of chronic illness on families. The first is education.
Learning what to expect from the illness and how best to control it
Knowledge of medications and their side effects
Learning appropriate preventive methods for keeping the illness routinely controlled, such as allergens to avoid
Education regarding how to intervene when a child's illness reaches emergency proportions is helpful for families and their community caregivers to reduce understandable fear and anxiety and to increase their sense of control.
Routine counseling and family and multifamily psychotherapy are other methods for reducing family stress by helping them devise solutions for maintaining normal activities while controlling the illness. Counseling provides chronically ill children, their siblings and their parents an arena in which to express pent-up feelings and secret fears and facilitates working through their stages of grief. This is particularly helpful when there are fears, such as fear of death, fear of divorce or fear of financial disaster.
Often, parents feel it is not okay to discuss their stress and concerns with the child. In fact, when done properly, this modeling may provide relief for the entire family. Fostering this type of honest and direct communication is a prime goal of counseling. It often helps chronically ill children realize their family understands how they feel and is there to help them. Families also experience counseling as helping them realize that they are not the only ones feeling these illness-related pressures. Active involvement by the entire family in a course of brief counseling can become a predictable, dependable and safe activity that the child can come to rely on to air important feelings.