Doctor, Gazi Yaşargil Training and Research Hospital, Department of Physical Medicine and Rehabilitation.
Assistant Professor, Dicle University, Turkey.
Int J Palliat Nurs. 2024 Jan 2;30(1):12-19. doi: 10.12968/ijpn.2024.30.1.12.
Neuromuscular diseases are inherited and the prevalance of neuromuscular disease is estimated to be around 1:2000.
This cross-sectional research was conducted with a qualitative research model. Data were collected from patients with an online survey using the snowball sampling method. The study was conducted in accordance with the STROBE checklist methodology. Frequencies and percentages were used to analyse demographic data, and content analysis was used for qualitative opinions.
Most of the participants were men and their education levels were low. Participants reported experiencing physical and socio-economic barriers to accessing healthcare. Participants also stated that these barriers have worsened since COVID-19.
Patients with hereditary myopathy are stigmatised by society and face different problems depending on the type of disease and level of function. It is recommended that decision-makers enable patients with hereditary myopathy in exceptional situations to access healthcare services and take steps to resolve their problems.
神经肌肉疾病是遗传性的，神经肌肉疾病的患病率估计约为 1:2000。
本横断面研究采用定性研究模型进行。使用滚雪球抽样法，通过在线调查从患者那里收集数据。研究遵循 STROBE 清单方法进行。使用频率和百分比分析人口统计学数据，使用内容分析对定性意见进行分析。
大多数参与者是男性，教育水平较低。参与者报告说在获得医疗保健方面存在身体和社会经济障碍。参与者还表示，自 COVID-19 以来，这些障碍有所恶化。
遗传性肌病患者受到社会的歧视，并且根据疾病类型和功能水平面临不同的问题。建议决策者在特殊情况下使遗传性肌病患者能够获得医疗服务，并采取措施解决他们的问题。
