When a parent is chronically ill: chronic fatigue syndrome.

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When a parent is chronically ill: chronic fatigue syndrome.

Journal: Nurs Res. 2009 Sep-Oct;58(5):332-9.

Author: Donalek JG.

Affiliation: Department of Nursing, De University, Chicago, IL

60614, USA.

NLM Citation: PMID: 19752673

BACKGROUND: Chronic illness may reshape not only the life of the ill

parent but also that of the entire family, but research in this area

remains limited. More specifically, little is known about how an ill

parent and the family respond to a particularly devastating and

controversial chronic illness, chronic fatigue syndrome (CFS).

OBJECTIVES: The objective of this study was to describe the responses

of the parent and the ensuing family system responses to the presence

of chronic fatigue syndrome as a chronic parental illness.

METHODS: Parents were interviewed individually, and then the ill

parent and as many immediate family members as possible were

interviewed collectively. After consent or assent, interviews were

audiotaped and transcribed. Thematic analyses at the individual,

intrafamily, and across-family levels were used to explore these phenomena.

RESULTS: Eight ill parents first described the onset of illness, an

ongoing struggle to receive diagnosis and care, and the significance

of the illness in transforming present and future roles. Multiple

members of the family together with the ill parent described how they

struggled with the reality of the illness, the shifting roles and

responsibilities, the reduced family income, and the frequent social

isolation that could be exacerbated by the controversial nature of

the illness. Families described and demonstrated their struggles to

maintain normal family life and plans in the face of continuing uncertainty.

DISCUSSION: This study is situated within current scholarship on

family responses to chronic parental illness. The value of the family

research interview is affirmed. Recommendations are made for future

directions in family nursing research exploring responses of families

in which a parent is chronically ill.