The impact of a haemophilia education intervention on the knowledge and health related quality of life of parents of Indian children with haemophilia

Phadnis, Supriya; Kar, Anita

doi:10.1111/hae.13070

Cited by 14 publications

(14 citation statements)

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“…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.…”

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confidence: 99%

“…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).…”

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confidence: 99%

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

et al. 2019

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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.

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confidence: 99%

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

et al. 2019

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“…A realização da educação para a saúde, seja em sessões individuais ou em grupos, possui os objetivos de melhoria dos conhecimentos, das atitudes e da capacidade de mudança. Esse processo deve ser realizado em instituições promotoras de saúde que apresentem escassez destas atividades e em localidades que apresentem alto nível de vulnerabilidade, como em espaços institucionalizados, a fim de reduzir os agravos e desfechos insatisfatórios encontrados e no contínuo planejamento de promover a saúde (LINGAWI; MAHER; AFIFI, 2017;LYU et al, 2017;PERCIVAL et al, 2016;PHADNIS;KAR, 2017;WALSH et al, 2018 CATANOZI, 2014;LEMBECK;SIMAS;JUNIOR, 2018;SPRONK et al, 2014).…”

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Intervenção educativa em saúde nutricional para educadores infantis da rede pública: um estudo avaliativo

Lourenção

Graciano

Santos

et al. 2021

RPE

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O objetivo do estudo é realizar um programa de treinamento e formação nutricional, direcionado aos educadores infantis de uma Rede Municipal de Educação Infantil, quanto às práticas alimentares e alimentação escolar, avaliando sua eficácia e verificando possíveis associações com a escolaridade destes educadores infantis. Trata-se de um estudo pré-experimental, do tipo pré-teste e pós-teste, realizado sem grupo de controlo. A amostra foi composta por 224 educadores infantis provenientes de 15 Centros Municipais de Educação Infantil, os quais participaram de um Curso de Promoção da Saúde e Prática Pedagógica na Educação Infantil, composto por dois módulos. Dados sociodemográficos, realização de atividade física e dados antropométricos foram informados via aplicação de questionário. Utilizou-se um Questionário de Conhecimento Nutricional para a mensuração do conhecimento em nutrição dos indivíduos e para a avaliação de aquisição de conhecimento, após Intervenção Nutricional, um questionário em escala Likert. Os dados foram analisados, considerando p < 0,05. O escore médio de conhecimento nutricional pré-intervenção educativa foi de 8,1±2,0 pontos, observando predominância de moderado conhecimento nutricional entre os educadores infantis (68%). Por meio do teste t pareado, observou-se diferença (p < 0,001) entre as notas médias após (5,07) e antes (3,4) do programa de intervenção nutricional, sem, contudo, haver diferença entre a estratificação escolar dos participantes (valor-p = 0,26). O programa de intervenção alimentar e nutricional proposto demonstrou-se simples e eficaz para a melhoria do conhecimento sobre alimentação e nutrição dos educadores infantis.

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“…14 There are other studies as in the study by Phadnis S et al have reported the high positive impact of a structured educational intervention of parents on the management of the illness and quality of life, which was lasting only up to a year. 15 The authors have emphasized the importance of continuous and repeated educational interventions to sustain the positive impact. This finding assumes even greater importance in the wake of current study findings, as the quality of life is found to worsen with advancing age of the child.…”

Section: Discussionmentioning

confidence: 99%

Impact of hemophilia on quality of life of affected children and their parents, a hospital based cross sectional study

Manikandasamy

Arumugasamy

Mathevan

2017

Int J Contemp Pediatr

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Background: Hemophilia can have a huge negative impact not only on the physical health but also on the psychological, economic and social well-being of the affected children and their family. Documentation of this negative impact on quality of life is vital in drawing the attention of relevant stakeholders to design and implement appropriate interventions.Methods: This was a cross sectional study, Children with hemophilia aged 4 to 12 years, and their parents who were attending the Pediatric Hematology Clinic of the Advanced Pediatric Centre, PGIMER, Chandigarh, between July 2009 and June 2010 were included in the study. The Hemo-QoL questionnaire was used to assess the quality of life after translation into local language and validation.Results: The study included 51 children with 10 children in 4-7 years age group and 41 children in 8-12 years age group and their parents. Perceived impact on family (77.3±14.7), poor physical health (62.9±29.8), sports and school (53.8±22.8) had the highest negative impact on QoL. Support from friends, family, and other persons seemed to have contributed positively towards the quality of life. Parents of older children had higher mean subscale scores in View of yourself subscale as compared to parents of younger children (40.8±14.2 vs 23.7±33.0, p value 0.018). Under Sports and school subscale also similar pattern was observed (48.2±20.7 Vs 34.1±13.8, P value 0.045).Conclusions: The Quality of life was poor both among children affected with hemophilia and their parents. Perceived impact on family, poor physical health and inability to participate in school/sports activities are the major contributors to poor QoL. Support from family, friends, and others is vital in maintaining QoL. The QOL worsens with increasing age of the child in both children and their parents.

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The impact of a haemophilia education intervention on the knowledge and health related quality of life of parents of Indian children with haemophilia

Abstract: Education about haemophilia resulted in improvement of knowledge, and practice of management of bleeding which was retained till a year after the intervention. However, a long-term effect on the HRQOL of parents could not be observed after administration of a single education intervention.

Cited by 14 publications

References 26 publications

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

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

Intervenção educativa em saúde nutricional para educadores infantis da rede pública: um estudo avaliativo

Impact of hemophilia on quality of life of affected children and their parents, a hospital based cross sectional study

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