| Title | When a parent is chronically ill: chronic fatigue syndrome. | | Author(s) | Donalek JG | | Institution | Department of Nursing, DePaul University, Chicago, IL 60614, USA. jdonalek@depaul.edu | | Source | Nurs Res 2009 Sep-Oct; 58(5):332-9. | | MeSH | Adaptation, Psychological
Adolescent
Adult
Aged
Attitude to Health
Child
Child of Impaired Parents
Cost of Illness
Employment
Family Health
Fatigue Syndrome, Chronic
Female
Humans
Life Change Events
Male
Middle Aged
Nursing Methodology Research
Parents
Questionnaires
Role
Social Isolation
Spouses
Trust
| | Abstract | 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. | | Language | eng | | Pub Type(s) | Journal Article
Research Support, Non-U.S. Gov't
| | PubMed ID | 19752673 |
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