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How people construct their experience of living with secondary lymphoedema in the context of their everyday lives in Australia

Meiklejohn, Judith, Heesch, Kristiann, Janda, Monika, & Hayes, Sandra C. (2013) How people construct their experience of living with secondary lymphoedema in the context of their everyday lives in Australia. Supportive Care in Cancer, 21(2), pp. 459-466.

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Abstract

Purpose

The purpose of this work was to explore how men and women construct their experiences living with lymphoedema following treatment for any cancer in the context of everyday life.

Methods

The design and conduct of this qualitative study was guided by Charmaz’ social constructivist grounded theory. To collect data, focus groups and telephone interviews were conducted. Audiotapes were transcribed verbatim and imported into NVivo8 to organise data and codes. Data were analysed using key grounded theory principles of constant comparison, data saturation and initial, focused and theoretical coding.

Results

Participants were 3 men and 26 women who had developed upper- or lower-limb lymphoedema following cancer treatment. Three conceptual categories were developed during data analysis and were labelled ‘accidental journey’, ‘altered normalcy’ and ‘ebb and flow of control’. ‘Altered normalcy’ reflects the physical and psychosocial consequences of lymphoedema and its relationship to everyday life. ‘Accidental journey’ explains the participants’ experiences with the health care system, including the prevention, treatment and management of their lymphoedema. ‘Ebb and flow of control’ draws upon a range of individual and social elements that influenced the participants’ perceived control over lymphoedema. These conceptual categories were inter-related and contributed to the core category of ‘sense of self’, which describes their perceptions of their identity and roles.

Conclusions

Results highlight the need for greater clinical and public awareness of lymphoedema as a chronic condition requiring prevention and treatment, and one that has far-reaching effects on physical and psychosocial well-being as well as overall quality of life.

Impact and interest:

2 citations in Scopus
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2 citations in Web of Science®

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ID Code: 51102
Item Type: Journal Article
Additional URLs:
Keywords: Cancer, secondary lymphoedema, quality of life, qualitative research, , grounded theory, social constructionism
DOI: 10.1007/s00520-012-1534-4
ISSN: 1433-7339
Subjects: Australian and New Zealand Standard Research Classification > MEDICAL AND HEALTH SCIENCES (110000) > PUBLIC HEALTH AND HEALTH SERVICES (111700)
Divisions: Current > QUT Faculties and Divisions > Faculty of Health
Current > Institutes > Institute of Health and Biomedical Innovation
Current > Schools > School of Public Health & Social Work
Copyright Owner: Copyright 2012 Springer
Copyright Statement: The original publication is available at SpringerLink http://www.springerlink.com
Deposited On: 28 Jun 2012 10:54
Last Modified: 07 Mar 2014 06:43

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