Improving access to healthcare for paediatric sickle cell disease patients: a qualitative study on healthcare professionals' views.
Improving access to healthcare for paediatric sickle cell disease patients: a qualitative study on healthcare professionals' views.
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DOI：
10.1186/s12913-021-06245-2
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发表时间：
2021-03-12
影响因子：
2.8
通讯作者：
Cnossen MH
中科院分区：
文献类型：
--
作者：
Houwing ME;Buddenbaum M;Verheul TCJ;de Pagter APJ;Philipsen JNJ;Hazelzet JA;Cnossen MH
在资源充足的国家，全面的护理计划延长了镰状细胞病患者的预期寿命，几乎所有婴儿都能存活到成年。然而，受镰状细胞病影响的家庭更有可能因为其种族或少数民族身份而被剥夺经济权利。由于根据《联合国儿童权利公约》，每个儿童都有权享有可达到的最高健康标准，因此必须确定在提供适当医疗保健方面的障碍和促进者。最佳的医疗保健可获得性将改善患有镰状细胞疾病的儿童及其家庭的医疗保健结果。镰状细胞护理领域的医疗保健专业人员对患者在进行有效护理时遇到的障碍有第一手经验。因此，我们假设，这些医疗专业人员清楚地知道什么是克服这些障碍所必需的，哪些促进者是最可行的。因此，这项研究的目的是绘制最佳做法和经验教训，以便为患有镰状细胞病的儿科患者及其家人实现更理想的医疗保健可获得性。为年轻的镰状细胞疾病患者工作的医疗保健专业人员被招募进行半结构化访谈。访谈指南被用来确保涵盖医疗保健可及性的四个维度。采访被转录和编码。根据实地笔记，生成了初始代码，以整理主要主题(如“交通运输”或“电信”)的数据(障碍和解决办法)。通过正在进行的专题分析，拟定了明确的主题，并报告了最佳做法作为建议。选择引文是为了突出或说明主题，并将报告的结果与经验数据联系起来。2019年，来自荷兰五家不同大学医院的22名医疗保健专业人员接受了采访。参与者包括(儿科)血液学家、护士和相关的卫生专业人员。出现了六个主题，所有这些主题都与改善镰状细胞病儿童及其家庭获得医疗保健的机会有关的最佳做法有关。首先，全额偿还照顾者的无形成本。其次，将医疗预约集中在同一天，帮助患者看所有需要的专科医生，而不必经常去医院。第三，根据共享护理原则组织护理，在不影响质量的情况下，尽可能靠近患者的家提供专科服务。第四，优化口头和书面交流方法，特别考虑语言障碍、识字能力低或两者兼有的家庭。第五，改进电子健康服务的使用，以满足用户的健康素养技能，包括医疗保健专业人员与镰状细胞病儿童照顾者之间的移动电话联系。最后，提高主要利益攸关方和公众对镰状细胞病的知识和兴趣，以确保在所有环境中了解和保障预防和急性保健措施。这项定性研究描述了医疗保健专业人员对克服医疗保健可获得性障碍的看法，这些障碍源于镰状细胞疾病患者及其家人面临的交叉脆弱性。本报告收集的建议为高收入国家提供了实际资源，以履行其根据《联合国儿童权利公约》对个别儿童承担的义务。
In well-resourced countries, comprehensive care programs have increased life expectancy of patients with sickle cell disease, with almost all infants surviving into adulthood. However, families affected by sickle cell disease are more likely to be economically disenfranchised because of their racial or ethnic minority status. As every individual child has the right to the highest attainable standard of health under the United Nations Convention on the Rights of the Child, it is essential to identify both barriers and facilitators with regard to the delivery of adequate healthcare. Optimal healthcare accessibility will improve healthcare outcomes for children with sickle cell disease and their families. Healthcare professionals in the field of sickle cell care have first-hand experience of the barriers that patients encounter when it comes to effective care. We therefore hypothesised that these medical professionals have a clear picture of what is necessary to overcome these barriers and which facilitators will be most feasible. Therefore, this study aims to map best practises and lessons learnt in order to attain more optimal healthcare accessibility for paediatric patients with sickle cell disease and their families. Healthcare professionals working with young patients with sickle cell disease were recruited for semi-structured interviews. An interview guide was used to ensure the four healthcare accessibility dimensions were covered. The interviews were transcribed and coded. Based on field notes, initial codes were generated, to collate data (both barriers and solutions) to main themes (such as “transportation”, or “telecommunication”). Through ongoing thematic analysis, definitive themes were formulated and best practices were reported as recommendations. Quotations were selected to highlight or illustrate the themes and link the reported results to the empirical data. In 2019, 22 healthcare professionals from five different university hospitals in the Netherlands were interviewed. Participants included (paediatric) haematologists, nurses and allied health professionals. Six themes emerged, all associated with best practices on topics related to the improvement of healthcare accessibility for children with sickle cell disease and their families. Firstly, the full reimbursement of invisible costs made by caregivers. Secondly, clustering of healthcare appointments on the same day to help patients seeing all required specialists without having to visit the hospital frequently. Thirdly, organisation of care according to shared care principles to deliver specialised services as close as possible to the patient’s home without compromising quality. Fourthly, optimising verbal and written communication methods with special consideration for families with language barriers, low literacy skills, or both. Fifthly, improving the use of eHealth services tailored to users’ health literacy skills, including accessible mobile telephone contact between healthcare professionals and caregivers of children with sickle cell disease. Finally, increasing knowledge and interest in sickle cell disease among key stakeholders and the public to ensure that preventive and acute healthcare measures are understood and safeguarded in all settings. This qualitative study describes the views of healthcare professionals on overcoming barriers of healthcare accessibility that arise from the intersecting vulnerabilities faced by patients with sickle cell disease and their families. The recommendations gathered in this report provide high-income countries with a practical resource to meet their obligations towards individual children under the United Nations Convention on the Rights of the Child.
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