Impact of health instructions on improving knowledge and practices of haemophilia A adolescents: a single centre experience

Abstract

Health instructions have an impact on improving knowledge and practices of haemophilia A adolescents.

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

“…16 Health literacy is defined as the capacity of individuals to obtain, process and understand the basic health information and services needed to make appropriate health decisions. 5 It enables self-management support. 17 Low health literacy is often associated with poorer health outcomes and increased mortality.…”

“…18 Thus, education of PWH and their families helps reduce mortality and morbidity. 5 In the WFH Twinning Program setting, regular multidisciplinary consultations have highlighted the lack of knowledge and understanding of haemophilia, its management, its complications (such as deaths related to circumcision) and bleeding risks for carriers. 13,14 By integrating the above recommendations while considering We paid specific attention to the carriers because mothers' education has proven to be the cornerstone of improving PWH care in Africa, as women are more likely than men to take on caregiving activities.…”

“…However, in the developing world, where a majority of PWH live, 3 there is a lack of contextualized, language and literacy adapted, and culturally sensitive educational material on haemophilia. 4,5 The topics addressed (eg pre-implantation diagnosis; prophylaxis throughout life), the wording and iconography used (eg pictures of Caucasian PWH without any signs of arthropathy) and several recommendations extracted from the educational materials primarily created for developed countries are generally not appropriate for the linguistic, conceptual and cultural specificities of developing countries.…”

“…Concerning PWH, the need for physiotherapy in case of joint bleeds and the relevance of HTC consultations outside bleeding episodes proved problematic.Overall, the participants' motivation to improve their knowledge about haemophilia was high, with a mean score of 18.4/20 ± 2.5(range:[8][9][10][11][12][13][14][15][16][17][18][19][20]. The mean score of how well they rated their disease knowledge was 3.4/5 ± 1.3 (range:[1][2][3][4][5]. No significant difference in motivation was observed between the PWH and carriers (18.4 ± 2.6 for PWH; 18.7 ± 2.5 for carriers, P = 0.821).…”

Compliance, concordance and adherence: what are we talking about?

“…We know that in childhood this is usually achieved through parental care, yet in adolescence treatment adherence wanes. Here, further patient education and support can increase adherence rates [3,9]. Newer therapeutic optionsof individualized prophylaxis [10][11][12] and longer half-life products [13] offer simpler and less demanding regimens.…”