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Ibeneme S.1, Chigbo N.2, Ama C.3, Ezeome E.4, Chukwuka C.5, Onugha C.6, Ezuma A.2,7, Fortwengel G.8,9
1University of Nigeria, Enugu Campus, Medical Rehabilitation, Enugu, Nigeria, 2University of Nigeria, Teaching Hospital, Ituku Ozalla, Physiotherapy, Enugu, Nigeria, 3University of Nigeria, Teaching Hospital, Ituku Ozalla, Paediatric Surgery, Enugu, Nigeria, 4University of Nigeria, Teaching Hospital, Ituku Ozalla, Oncology & Palliative Care, ENUGU, Nigeria, 5University of Alabama Nigeria Teaching Hospital, Ituku Ozalla, HIV Clinic, Enugu, Nigeria, 6University of Alabama Nigeria Teaching Hospital, Ituku Ozalla, Physiotherapy, Enugu, Nigeria, 7University of Nigeria, Clinical Trial Consortium, Enugu, Nigeria, 8Hochschule Hannover University of Applied Sciences & Arts, German UNESCO Unit on Bioethics, Fakultät III - Medien, Information und Design, Hannover, Germany, 9Hochschule Hannover - University of Applied Sciences and Arts, UNIRED Research Group, Hannover, Germany
Background: Despite overwhelming evidence of the benefits of exercise programs in disease prevention, rehabilitation and health promotion for the general population, especially patients with HIV/AIDS, yet participation in exercise class, and consenting to be part of research studies on exercise is low among patients with HIV/AIDS, in some lower middle income countries. In this population, the factors that might influence the consenting process were not fully elucidated, and were investigated.
Purpose: To identify factors that might inform patients' decision to withhold consent from participating in exercise class for people living with HIV/AIDS in a lower middle income country.
Methods: 58 of 103 patients living with HIV/AIDS, who attended a talk on the health benefits of a 12-week physical exercise program, were recruited using convenience sampling technique in a cross-sectional observational study. The sample size was calculated using the Fishers equation based on a national HIV prevalence of 3.6%. They were interviewed using a semi-structured qualitative interview guide that focused on different aspects of the consenting process. Qualitative data were analysed thematically, and quantitative data were analysed using descriptive.
Results: Out of 103 adults living with HIV who participated in the health talk, 85 individuals indicated an interest to participate in a 12-week exercise program. Of this number, only 52 consented, while 33 persons declined after hesitation to participate and were the focus of this study. Their age range was between 18-64 years with an uneven gender distribution: men (n=12) 33.3%; women (n = 21) 63.6%. Emerging themes from qualitative analysis revealed that patients were aware of the benefits of exercise but had serious concerns about having to obtain frequent permission from work, business or home to attend the program for 12 weeks, a need to obtain permission from husband and/or family members before consenting, non-disclosure of status to spouse, friends, colleagues and family, fear of worsened health conditions if exercise program is terminated, stigmatization, busy life schedules and gender roles expectations.
Conclusion(s): There are layers of socio-cultural barriers to participation in exercise programs among patients living with HIV/AIDS that may require counseling, social acceptance and family support, to break. In some cultures, informed consent may not be a true expression of an individuals right to make decisions on personal health matters, but a reflection of the collective opinion of family relations and caregivers according to socio-cultural practices; and might be at variance with orthodox principles of human subject research. Therefore, exercise programs in this population must be socially sensitive, context-driven and culturally relevant to enhance wider uptake and participation of desired patients.
Implications: Culture and gender role perceptions on the orthodox ethical principles of human subject research are important determinants of the consenting process for participation in exercise programs/studies by HIV patients in a lower middle income country.
Funding acknowledgements: This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors
Topic: Oncology, HIV & palliative care
Ethics approval: This study was approved by the University of Nigeria Health Research Ethics Committee on certificate number - NHREC/05/01/2008B.
All authors, affiliations and abstracts have been published as submitted.
