Introduction: rare diseases (RD) are extremely complex health conditions. Persons affected by these conditions in Cameroon are often neglected in society and health systems through the inexistence of policies and programs. In Cameroon, there exists no program or policy conceived to address their needs in terms of access to quality health care, timely and reliable diagnosis, treatments, education, etc. The consequence is that persons living with a RD (PLWRD) and their families do not participate in social life. The unique fate of PLWRD reveals that the principle of social justice and equity is flawed in Cameroon. However, patients, in order to survive in society, rely on patients' organizations (PO) to improve their quality of life (QoL) and advocate for a better consideration in the society. The aim of this paper is to highlight how initiatives from a grassroot perspective like POs can inform decision-makers to address the needs of PLWRD and their families. Methods: the study associated a systematic literature review and semi-structured interviews with parents of children suffering from a RD and who are members of a PO. Through the systematic literature review we highlighted the impact POs have in the development of research on RDs, patient literacy, patient empowerment and advocacy while semi-structured interviews brought out the needs of patients and their families. Results: findings, on the one hand show that, in Cameroon PLWRD face a number of challenges like the incurability of their condition, catastrophic medical expenses, stigmatization and marginalization, etc. and though in POs their QoL still remains poor. On the other hand, where POs are empowered they are key actors in research on RDs and help decision-makers on having a better insight into the type of RD that exists across a geographical area, the sociodemographic profile of patients, etc. for a better management of PLWRD. Conclusion: the study suggests that the ministry of public health should create a network with existing RD POs to adequately meet the needs of PLWRD.
Health Services Accessibility , Quality of Life , Rare Diseases , Cameroon , Humans , Rare Diseases/therapy , Interviews as Topic , Child , Social Justice , Female , Patient Advocacy , Quality of Health Care , Male , Delivery of Health Care/organization & administration , Delivery of Health Care/standards , Patient Participation
Introduction: the MRKH syndrome is a rare congenital malformation in women. As most rare conditions, this syndrome usually causes confusion in patients and even in physicians. The medical encounter of young girls with the syndrome is intertwined in a complex matrix of social, economic and cultural factors that only contribute in creating more confusion in the young girl. Methods: the study is qualitative and designed to describe the first encounter of women with the MRKH syndrome at the physician. To that effect, an interview guide was designed for in-depth interviews with 05 MRKH women from varied African countries (Cameroon, Côte-d'Ivoire, and Senegal) selected using the snowball technique. Results: findings from this study revealed that most women go to the hospital and return more confused as no clear information is given to them on their condition. Also, cultural, social and religious beliefs on the one hand seems to blur the physician's judgment to provide appropriate remedies like instrumental dilatation for rudimentary vagina, surrogacy for uterine infertility factor, adoption, etc. and on the other hand, these beliefs also act as a barrier for these young girls who are not strangers to the culture. Conclusion: the study suggests that, physicians give to the patients all necessary information for them to take elective decisions on their health. It also suggests that awareness should be raised on this condition.
46, XX Disorders of Sex Development , Humans , Female , 46, XX Disorders of Sex Development/diagnosis , Cameroon , Senegal , Uterus
INTRODUCTION: since its appearance, the COVID-19 has exhausted global health systems. It was predictable that countries with weak health systems will be severly wiped out by the pandemic. Countries across Europe faced severe human loses and it was foreseable that Africa will experience an even worse tragedy. Suprisingly, since the evolution of the pandemic, there has been remarkable resistance from African countries, including Cameroon. METHOD: the study was phenomenographic. The data were collected successively from media observations (in particular the WHO site, national TV (CRTV) programs 'Parlons COVID'), social networks - Facebook and Whatsapp) and direct observations of some quarters of Garoua (Roumdé-Adjia, Foulbéré, Kakataré) and Mora for the Far North and the southern zone of Yaoundé (Ngoa-Ekelé, Nkolondom, Mokolo). These observations were associated with individual interview, reviews and note-taking around places of public circulation (places of worship, markets and discussion sites (Faada). The theory of functionalism was mobilized in this study. RESULTS: the results show that Cameroonians perceive the pandemic as an eminently metasocial phenomenon which explains their tendency to use prayers, nature to counter this attack. CONCLUSION: the study suggests that a multidimensional approach is capable of offering avenues of « liberation ¼. Also, the study once again raises the place of traditional medecine in health systems and shows the close link that exists between traditional medicine and spirituality.
Attitude to Health , COVID-19/epidemiology , Anthropology, Cultural , Cameroon/epidemiology , Humans , Poverty , Religion , Sociological Factors , Urban Health
