"A Living Death": A Qualitative Assessment of Quality of Life among Women with Severe Trachoma in Rural Niger Open Access

Palmer, Stephanie Lynn (2013)

Permanent URL: https://etd.library.emory.edu/concern/etds/rr171x933?locale=en


Background: Trachoma causes visual impairment and blindness, but even prior to vision loss, evidence suggests that it has a profound effect on women's abilities to lead a normal life. However, standard burden of disease measures, such as DALYs, fail to take this into account. In order to address this, we assessed the effects of trichiasis on the ability of women in rural Niger to live a quality life. We also examined the effects of trichiasis surgery on quality of life, and the process whereby women decide whether to seek surgery for trichiasis.

Methods: In-depth semi-structured interviews were conducted with operated and unoperated women and a friend of their choosing. Heads of households of women with trichiasis were also invited to participate in separate focus group discussions to contribute contextual information.

Results: A total of 23 women (13 operated and 10 unoperated) were interviewed and four focus groups were held in six villages. Women defined quality of life in terms of health, security, family and community, social status and fulfillment of religious obligations. Trichiasis profoundly affected quality of life by causing social withdrawal and exclusion, severe pain and physical disability, and inability to work and earn an income. This leads to loss of social status for these women and burdens the family with additional work and expenses. Surgery improves quality of life in almost all cases; the improvement extends beyond clinical improvement. Women generally make their own decision to be operated without pre-planning or forethought when surgical camp opportunities arise, though some still face obstacles preventing them from accessing surgery.

Conclusions: Trichiasis has a profound and disabling effect on most women, even those with less severe symptoms. While women in rural Niger often live in extreme poverty, trichiasis exacerbates the situation for these women personally, by causing physical disability and undermining their social status. It also adds to family burden, as women lose the ability to meaningfully contribute to the household and instead require additional family resources for their care. This should be reflected in the burden of disease attributable to trachoma in the DALY calculations currently under revision.

Table of Contents

List of Tables and Figures...iii

Elimination of Blinding Trachoma...3
Trachoma and Trichiasis in Women...4
Active Trachoma and Trichiasis in Niger...5
Trichiasis Surgery...7
Adverse Surgical Outcomes...9
Measuring the Burden of Trachoma...11
Study Significance...13
Purpose Statement...14
Study Questions...14

Literature Review...16

Quality of Life...16
Quality of Life Studies in Populations with Diseases of the Eye or Visual Impairment...20
Criticisms of Survey-Based Quality of Life Studies...23


Study Site...31
Data Collection...35
Data Analysis...37
Ethical Considerations...38


Overview of Findings...40
Definition of a Quality Life...42
Effects of Trichiasis on Quality of Life...44
Perceptions of Trichiasis Surgery and Impact on Quality of Life...52
Decision-Making and Factors Influencing the Decision to Undergo Trichiasis Surgery...57


Effects of Trichiasis on Quality of Life...64
Trichiasis Surgery and Effects on Quality of Life...70
Study Strengths...73
Study Limitations...75

Public Health Recommendations...78



Appendix I: Screening Form for Trichiasis Patients (Operated and Unoperated)...88
Appendix II: Intake Form for Friends of Trichiasis Patients...91
Appendix III: Screening Form for Heads of Households for Focus Group Discussions...92
Appendix IV: Thematic Interview Guide: Operated Trichiasis Patients...93
Appendix V: Thematic Interview Guide: Nonoperated Trichiasis Patients...96
Appendix VI: Thematic Interview Guide: Heads of Households...99

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