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Open Access Research article

Assessment of stigma in patients with cystic fibrosis

Smita Pakhale1234*, Michael Armstrong1, Crystal Holly123, Rojiemiahd Edjoc1, Ena Gaudet2, Shawn Aaron1234, Giorgio Tasca123, William Cameron123 and Louise Balfour123

Author Affiliations

1 Ottawa Hospital Research Institute, 501 Smyth Road, K1H 8 M5 Ottawa, Ontario, Canada

2 The Ottawa Hospital, 501 Smyth Road, K1H 8 M5 Ottawa, Ontario, Canada

3 The University of Ottawa, 451 Smyth Road, K1H 8 M5 Ottawa, Ontario, Canada

4 Division of Respiratory Medicine, The Ottawa Hospital, 501 Smyth Road, Ottawa, Ontario K1H 8 L6, Canada

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BMC Pulmonary Medicine 2014, 14:76  doi:10.1186/1471-2466-14-76

Published: 1 May 2014

Abstract

Background

Research that explores stigma in Cystic Fibrosis (CF) is limited. Productive cough, repeated lung infections, and periods of serious illness requiring hospitalizations are among common symptoms of CF. These symptoms may cause a negative perception by others. We developed a CF-specific Stigma Scale and tested its psychometric properties.

Methods

We conducted a focus group with 11 participants including adult patients with CF (n = 5) and their informal caregivers (n = 6). The thematic content of the focus group was analyzed to find key themes. We developed a CF-specific Stigma Scale and assessed its psychometric properties in a 3-month prospective cohort study of adult CF outpatients (n = 45).

Results

Stigma emerged as consistent concern for people living and caring for those with CF, affecting both patients’ lives and health through the focus group. Using the newly developed CF Stigma scale, the mean baseline score was 16.6 (SD = 4.5, Range = 10-25). The CF Stigma Scale demonstrated robust psychometric properties: 1) Internal consistency: α = 0.79; 2) Mean inter-item correlation: 0.30 with good test-retest reliability; 3) Convergent validity: Positive associations with depression, severity of CF symptoms and anxiety; negative associations with validated quality of life scores were observed.

Conclusions

Stigma is measurable and significantly impacts the lives of CF patients. Further research should investigate the role of stigma in patients living with CF.

Keywords:
Psychometric; Treatment Adherence; Validation; Focus group