Assisting Family Members With Emotional and Behavioral Adaptation

The successful integration of illness management into family routines requires parents to respond to a number of illness- and non-illness-related tasks (see

Table 29-4. Logistical resources for families facing pediatric physical illness

Mutual support organizations—disease or problem associated State financial supports—children with special health care needs Federal financial supports—Social Security disability funds Activities for unique populations—Special Olympics, blind athletics Mutual support groups for children and youth Support for obtaining or maintaining health insurance coverage Advocacy opportunities—locally, statewide, and nationally

Table 29-5. Nonillness and illness tasks facing families with pediatric physical illness

Non-illness-related family tasks

1. Maintaining family connections

2. Maintaining family morale and a sense of meaning

3. Ensuring attention to parental relationships and opportunities for intimacy

4. Providing attention, encouragement, and supervision for siblings

5. Ensuring opportunities for play, recreation, and enjoyment

6. Ensuring adequate financial resources

7. Maintaining connections to extended family, community supports, and friendships

8. Continuing with family spiritual life

9. Dealing with other important family stresses—other family illness, moving, job loss, or job change Illness-related family tasks

1. Developing a shared understanding of the illness

2. Resolving disagreements about the child's condition or care

3. Developing routines that embed illness care into family life as much as possible

4. Assigning and monitoring illness tasks, especially making sure that the ill child can be and is responsible for his or her tasks

5. Building some flexibility in parental roles and avoiding rigid role definition

6. Developing a shared view that illness management builds family competence

7. Communicating with siblings about the illness and their experience of the illness

8. Experiencing, communicating about, and managing emotional reactions to the illness

9. Collaborating effectively with the medical team

10. Ensuring that all members of the family and medical team are known to and engage with each other

Table 29-5). Meetings with the medical team may provide an opportunity for discussion and resolution of potential disagreements among family members. The medical team should be alert to fears, frustrations, and feelings of anger and sadness related to the illness and, in doing so, honor the feelings of individual family members and be aware of the potential for these reactions to strain family relationships.

Physical illness can result in limitations to a child's autonomy and the development of parental overprotectiveness. Parents can benefit from guidance in establishing and/or maintaining limits with the ill child while simultaneously supporting age-appropriate efforts at individuation. Special events, celebrations, and outings often can be scheduled to recognize accomplishments. In situations in which the illness course leads to medical deterioration, decreasing function, or death, the family requires compassion, availability, and honesty on the part of the medical team. The degree to which the team is engaged, supportive, and accepting may be helpful to the family, even in the context of their own feelings of anger, despair, and helplessness. At such times, the medical team becomes witness to the family's experience and models acceptance of the child's medical outcome.

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