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Body map stories from Colombia: experiences of people affected by leprosy and the influence of peers during diagnosis and treatment.
- Source :
- International Journal for Equity in Health; 5/13/2024, Vol. 23 Issue 1, p1-12, 12p
- Publication Year :
- 2024
-
Abstract
- Introduction: Almost one third of people affected by leprosy in Colombia suffer from disability, which often results from delayed diagnosis and treatment. We aimed to explore the experience of people affected by leprosy during the process of diagnosis and treatment and if and how this experience was influenced by peers. Methods: A qualitative study using body map stories was conducted from October 2019 to February 2020 in Colombia. Adult people affected by leprosy were recruited through patient associations in different cities. We conducted three sessions with an average duration of 2–3 h per participant, during which the participants created a painted map of their body and chose symbols to represent their experience, while being engaged in an informal interview. The sessions were audio recorded, transcribed verbatim and analyzed thematically by an interdisciplinary team, consisting of physicians, social workers and a person affected by leprosy. Results: The 17 study participants (11 female) were aged 20 to 70 years. Leprosy-related manifestations ranged from no to advanced disability. Some participants were active members of associations for people affected by leprosy. Three main themes were identified during analysis: (1) A long pathway to diagnosis, (2) Therapy as a double-edged sword and (3) The influence of other people affected by leprosy. The participants described an often years-long process until being diagnosed, which was marked by insecurities, repeated misdiagnosis, and worsening mental and physical health. Delayed diagnosis was related to late health care seeking, but also to inadequate health communication, lack of leprosy-related knowledge and negligence among health care workers. A high desire to cure motivated the participants to take their medication rigorously, despite the high treatment burden. Support from peers, either within the own social environment or provided from associations, contributed to a faster diagnosis and increased therapy adherence. Peers helped to recognize the symptoms, urged patients to seek care, recommended physicians with leprosy-related knowledge and provided a realistic example of both disease severity and curability. Conclusion: People affected by leprosy experience a significant burden during the process of diagnosis and treatment. Involving well-trained peers could foster early diagnosis, treatment compliance and prevention of disability. [ABSTRACT FROM AUTHOR]
- Subjects :
- HANSEN'S disease treatment
HANSEN'S disease diagnosis
HEALTH literacy
ATTITUDES toward illness
QUALITATIVE research
MENTAL health
HEALTH status indicators
SELF-management (Psychology)
RESEARCH funding
INTERVIEWING
DESCRIPTIVE statistics
PHYSICIANS' attitudes
SOCIAL worker attitudes
DIAGNOSTIC errors
HANSEN'S disease
EXPERIENCE
SOUND recordings
THEMATIC analysis
STORYTELLING
COMMUNICATION
NEGLIGENCE
DELAYED diagnosis
SOCIAL support
PATIENTS' attitudes
HEALTH care teams
Subjects
Details
- Language :
- English
- ISSN :
- 14759276
- Volume :
- 23
- Issue :
- 1
- Database :
- Complementary Index
- Journal :
- International Journal for Equity in Health
- Publication Type :
- Academic Journal
- Accession number :
- 177221195
- Full Text :
- https://doi.org/10.1186/s12939-024-02152-0