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Berg, Agneta
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Björklund, M., Sarvimäki, A. & Berg, A. (2010). Living with head and neck cancer: a profile of captivity. Journal of Nursing and Healthcare of Chronic Illness, 2(1), 22-31
Open this publication in new window or tab >>Living with head and neck cancer: a profile of captivity
2010 (English)In: Journal of Nursing and Healthcare of Chronic Illness, ISSN 1752-9816, E-ISSN 1752-9824, Vol. 2, no 1, p. 22-31Article in journal (Refereed) Published
Abstract [en]

Aim. To illuminate what it means to live with head and neck cancer.

Background. Patients could experience head and neck cancer as more emotionally traumatic than other cancers because of visible disfigurement and its life-threatening impact on vital functions. This long-term illness often leads to lifestyle changes such as to physical function, work and everyday tasks, interpersonal relationships and social functioning.

Design. This study used a qualitative and explorative longitudinal and prospective design with semi-structured interviews and open-ended questions. Twenty-one interviews were conducted with six participants with newly diagnosed or newly recurrent head and neck cancer. The analysis was descriptive and interpretive.

Findings. The participants were living 'in captivity' in the sense that their symptoms were constant reminders of the disease. Our findings also revealed existential loneliness and spiritual growth, as interpreted within six themes: altered sense of affiliation; hostage of health care; locked up in a broken body, but with a free spirit; confined in a rogue body, forced dependency on others, and caught up in a permanent illness trajectory.

Conclusions. Living with head and neck cancer involves emotional and existential vulnerability. The participants and their next of kin experienced insufficient support from health services and inadequate coordination between phases of their lengthy illness trajectory. These findings call for changes in oncological rehabilitation and management. Patient care must take a holistic view of everyone involved, centring on the individual and the promotion of health. A care coordinator could navigate between the individual patient needs and appropriate health services, hopefully with results that lessen the individual's emotional and existential confinement.

Keywords
coordinator, everyday living, head and neck cancer, health promotion, management, qualitative descriptive and interpretive analysis
National Category
Nursing Social Sciences Interdisciplinary
Identifiers
urn:nbn:se:hj:diva-29709 (URN)10.1111/j.1752-9824.2010.01042.x (DOI)
Available from: 2010-03-11 Created: 2016-04-04 Last updated: 2018-01-10Bibliographically approved

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