Dependence upon technology to sustain life is commonplace for many chronically ill children. With the expectation that this care will be delivered in the home, many parents have had to assume the role of continuous health care provider.
The purpose of this study was to describe family functioning and parental coping in families with chronically ill children dependent upon home intravenous therapy of nutritional substances and/or drugs. Age, education, income, marital status, severity of illness as perceived by the parent, and illness typology were explored in relation to family functioning and parental coping. Additional purposes included the identification of children's health conditions requiring this type of care and an exploration of family concerns regarding home care of IV dependent children.
One of the assumptions of this study was that these families must be able to function well and cope with the long-term commitment and changing demands of care. It is unclear how families are assessed on these parameters. Another assumption was that parents have similar experiences despite the diversity of diagnostic categories, that is, parental coping and family functioning operate under a non-categorical approach to illness.
Data were collected in a cross-sectional study of 97 parents recruited nationally from home health care agencies, referrals from specialty pediatricians, advertisement in parent oriented newsletters, and from a large data set of technology dependent children. Telephone interviews elicited measures of family functioning, parental coping, and a variety of sociodemographic variables.
Several factors were associated with the dimensions of parental coping. Parental age was associated with seeking divergent and respite activities, while being married was associated with intimate and peer support. Both parental age and education were inversely associated with optimism and maintaining a sense of parental responsibility. The three dimensions of parental coping were associated with higher levels of family functioning. An inverse relationship existed between the severity of diagnosis and family functioning.
These findings demonstrate that the clinical assessment of these factors may be useful in providing optimum ongoing care and support services to families of children dependent on home intravenous therapy.
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