All families are unique, but they will experience some stressor's related to the diagnosis and treatment of a
chronic condition in their child. But although families will experience stress, the majority of them will cope
with the stress and adapt to the demands of the chronic condition.
Even families who have achieved a high level of adjustment and acceptance are at predictable times in need
of support from professionals or other families who have coped successfully with similar experiences.
The ability to adapt to changing circumstances is a hallmark of resilient families. A number of studies
indicate that positive outcomes in children with illness’s are related to families who are flexible in setting
rules, establishing roles, and defining expectations. By contrast, several investigators report that rigidity
tends to be associated with over protectiveness and emotional repression in families of children with
chronic conditions (Patterson, 1991b).
Parents often assume new roles related to the child’s illness including:
1) Case Management 2) Delivering Nursing Care 3) Learning medical terminology, acquiring medical
knowledge and navigating the health care system
Parents frequently must overlap their roles and assist their spouse with a role that the spouse sees as
primarily his or hers (eg wage earner, caregiver, homemaker).
The mother is still the primary caregiver of children in most western societies. It is her role that will there-
fore be most effected by chronic illness in a child. Three imperatives dominate the work of mothering: to
preserve their children’s lives; to foster their development and to ensure they the are socially acceptable.
She is likely to be worried about her child’s prognosis and living with uncertainty about the illness. She
may be required to deal with complex physical needs without adequate training. She will be forced to deal
with a health care system which is disjointed and fragmented and fails to meet her needs.
The privacy of the mother child relationship becomes accessible to professional scrutiny. Professionals
frequently judge the mothers acceptance of the situation to be an important reason behind the success or
failure of treatment. Such motherhood is generally stressful and demanding.
Chronic Illness may limit her social life and career opportunities, leading to overall life dissatisfaction. She
maybe also feel a sense of failure in her role as a mother, in that she cannot make her child well and
happy. The result may be a degree of chronic anxiety or depression which she may also see as a failure to
cope. The mother may also worry about subsequent pregnancies and whether the coming child will also
be affected, or whether they will be able to cope.
THE EFFECTS OF A CHRONIC ILLNESS IN THE FAMILY