'A living death': a qualitative assessment of quality of life among women with trichiasis in rural Niger

Abstract

Background: Prior to blindness, trachoma is thought to profoundly affect women's abilities to lead normal lives, but supporting evidence is lacking. To better understand the effects of trichiasis, we asked women to define quality of life, how trichiasis affects this idea and their perceptions of eyelid surgery.

Methods: Operated and unoperated women were purposively selected for in-depth interviews. These were audio-recorded and transcribed, and codes were identified and applied to the transcripts. Overarching themes, commonalities and differences were identified and matched to quotations.

Results: Twenty-three women were interviewed. Quality of life was defined as health, security, family, social status and religious participation. Trichiasis caused severe pain and loss of health, leading to loss of security. This affected social, economic and religious activities and caused burden on their families. Surgery improved quality of life, even in cases of surgical failure or recurrent disease.

Conclusions: Trichiasis disables most women, even those reporting fewer or less-severe symptoms. While women in rural Niger often live in extreme poverty, trichiasis exacerbates the situation, making women unable to work and undermining their social status. It adds to family burden, as women lose the ability to meaningfully contribute to the household and require additional family resources for their care.

Keywords: Niger; Quality of life; Trichiasis; Women.