Development and evaluation of appropriate, culturally adapted educational tools for Ivoirian patients with haemophilia, haemophilia carriers and their families

Abstract

Introduction Patient education is the cornerstone of the management of chronic diseases like haemophilia. The education of patients with haemophilia (PWH), haemophilia carriers and their families requires educational materials adapted to their socio‐cultural situations for maximum effectiveness. These tools are currently lacking in developing countries like Côte d'Ivoire. Aims We sought to develop educational materials adapted to the Ivoirian context, assess their short‐ and long‐term impacts on knowledge about haemophilia and evaluate the participants’ motivation and their satisfaction with the tools. Methods Following their elaboration, the materials were administered to 71 participants (37 PWH, 29 carriers and 5 fathers), whose level of knowledge was assessed before (T0), just after (T1), and 1 year following the intervention (T2). We evaluated, analysed and compared the scores at T0, T1 and T2 and evaluated motivation at T0 and satisfaction at T1. Results All participants significantly improved their skills at T1 (P < 0.001), maintaining a sustained and significant improvement at T2 in comparison with T0 (P < 0.001). In all participants, we observed a high degree of motivation towards improving their knowledge and a high degree of satisfaction with the materials. Conclusions Appropriate, culturally adapted educational tools focused on haemophilia are now available in Côte d’Ivoire. These materials will likely contribute to improving haemophilia awareness, to implementing screening, prevention and self‐management of the disease and to positively impacting the outcomes of Ivoirian PWH in the long term.

Feasibility and outcomes of low‐dose and low‐frequency prophylaxis with recombinant extended half‐life products (Fc‐rFVIII and Fc‐rFIX) in Ivorian children with hemophilia: Two‐year experience in the setting of World Federation of Haemophilia humanitarian aid programme

“…The lack of adherence caused by a failure of parents to understand prophylaxis was previously reported in China by Tang et al 22 This highlights the relevance of therapeutic education 23 and the need for regular and continuous educational training with locally and culturally appropriate materials on prophylaxis, 16 In our population, we observed during the 2 years of study period a low rate of inhibitor incidence (12.5% with 8.3% of persistent inhibitor). This is in line with previous published data from Ivory Coast but lower than reported in studies conducted on genetic risk factors for inhibitors among black PWHs in North America.…”

How to implement medical and patient associations in low‐income countries: A proposition from the African French Alliance for the Treatment of Haemophilia (AFATH)

“…An essential goal is to raise awareness on detection of potential carriers in order to supervise the birth and early detection of newborns. The visiting team should bring educational material taking into account local realities (literacy issues), beliefs and behaviours, and base their educational workshop on identified patient needs 20,21 . These workshops should be co‐built with the local association.…”

“…A culturally adapted educational tool has been developed for Ivory Coast and is available on the site. 20 For all these aspects of diagnosis, education and patient care, the third Edition of “WFH guidelines for the management of hemophilia” is highly valued and of great importance 22 …”

“…The visiting team should bring educational material taking into account local realities (literacy issues), beliefs and behaviours, and base their educational workshop on identified patient needs. 20,21 These workshops should be co-built with the local association. A culturally adapted educational tool has been developed for Ivory Coast and is available on the site.…”

Unravelling the knowledge, beliefs, behaviours and concerns of Persons with Haemophilia and their carriers in Senegal

“…By being more empowered, PWH should not only gain better skills to cope better with their daily disease requirements, but this would encourage them to spread knowledge and thereby empower others. Appropriate, culturally adapted educational tools are likely to contribute to better disease awareness, prevention and self‐management, as also recently demonstrated in Ivory Coast 21 . The use of information and communication technology (ICT) in health care, E‐health, is explored as a tool to improve education and the access to information the quality of care 22 …”