Stress and Coping in Families with Ill or Disabled Children:

Abstract

Chronic illness or disability of a child is a specific stressor affecting the entire family. To analyze the factors influencing the family's stress response, the ABCX and Double ABCX Models of Family Stress are reviewed. Four factors of the model which are particularly relevant when applied to the experience of the family with a chronically ill or disabled child are discussed: the specific characteristics of the child's disorder, the family's perception of the stressor, the chronicity of the problem, and the social network of the family. Therapists having frequent and intimate contacts with families may benefit from knowledge of the factors of the model to enhance their ability to reduce family stress. Specific therapist roles in reducing stress are respecting the parents' emotional and social needs, interpreting and anticipating medical and developmental events, and facilitating functional adaptation of the child. Health care professionals in pediatrics frequently encounter families under tremendous stress related to serious health problems in a child. The professionals' words and actions, their management of the family and the child, their responses to the parents' behaviors all are potential sources for ameliorating or increasing stress on the family. Professionals who deal with children with chronic disabilities or illnesses, and with their families, must empathize with the experience of parents in the foreign world of medicine and disability, respect the immediacy and gravity of their concern, and tolerate their occasional confusion and irrational behavior. Physical therapists and occupational therapists in pediatrics have both the opportunity and responsibility to enhance the effective coping of parents who struggle to deal with their child's difficulties and the stress their child's problems place on the entire family. To be effective, therapists must understand the factors and processes of family coping. Models which structure family response to stressors and coping efforts have been developed to facilitate analysis of the complex processes. Hill developed the original ABCX model of family stress, which McCubbin and Patterson expanded into the Double ABCX Model of Adaptation, identifying factors affecting a family's adjustment to a severe ongoing stressor (Figure 1). The expanded model includes the family's adjustment to cumulative effects of the stressor after the impact of the original crisis. Both the original ABCX and the expanded Double ABCX models identify variables which account for observed differences among families' adaptations to stressful situations.