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    The challenges faced by patients with hereditary myopathy during the COVID-19 pandemic
    (Ma Healthcare Ltd, 2024) Turken, Askeri; Capar, Hasim; Kurt, Mehmet Emin; Cakmak, Cuma
    Background: Neuromuscular diseases are inherited and the prevalance of neuromuscular disease is estimated to be around 1:2000. Methods: 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. Results: 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. Conclusions: 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.
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    Development of the self-efficacy scale in caregivers of Duchenne muscular dystrophy patients
    (Ios Press, 2024) Turken, Askeri; Capar, Hasim; Cakmak, Cuma; Kurt, Mehmet Emin; Mentes, Nurettin
    BACKGROUND: It is important to measure the self-efficacy knowledge of the caregiver of Duchenne muscular dystrophy (DMD) patients in order to overcome the problems that arise and carry out the care process in a healthy manner. OBJECTIVE: This research was carried out to develop a self-efficacy scale in caregivers of individuals with DMD. METHODS: The study was conducted with 99 volunteer DMD caregivers to evaluate the psychometric properties of the developed scale. Exploratory Factor Analysis (EFA) was performed with the SPSS 25 Package Program to determine the factors of the scale. Confirmatory Factor Analysis (CFA) analysis was performed with AMOS 23 to confirm the factors obtained by EFA. Cronbach's alpha coefficient was used for the internal consistency of the DMD-CSES. RESULTS: A valid and reliable scale was obtained to measure the self-efficacy of caregivers of DMD patients. CONCLUSION: Although some scales have been developed to evaluate the care burden of family members who care for patient-centered symptoms and functional changes in patients with DMD, there is no single scale that adequately describes the conditions and resources of caregivers on a global scale. The search for a definitive scale is expected to continue until a definitive treatment for the disease is found. Developing a valid and reliable scale to identify the self-efficacy, knowledge, skills and resources of caregivers with a common perspective of physicians and health management team centred on patients with DMD will be effective in practice.
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    The impact of pandemic fatigue on anxiety and quality of life in patients attending physical medicine and rehabilitation clinics
    (Kashan Univ Medical Sciences, 2024) Capar, Hasim; Cakmak, Cuma; Turken, Askeri; Kar, Ahmet; Kurt, Mehmet Emin
    Objectives: The current study aims to investigate the impact of pandemic fatigue on anxiety and quality of life in patients visiting physical therapy and rehabilitation outpatient clinics. Methods: A cross-sectional study was conducted involving 303 patients over the age of 18 who had not previously contracted COVID19. These patients sought treatment at the Physical Medicine and Rehabilitation outpatient clinic for musculoskeletal disorders and reported experiencing symptoms of pandemic fatigue for at least one month. Results: A low-level positive significant relationship was identified between COVID-19 anxiety and pandemic fatigue. Additionally, perceived health status demonstrated a low-level negative significant relationship with both behavioral fatigues, a sub-dimension of pandemic fatigue, and COVID-19 anxiety. Furthermore, a significant effect of COVID-19 anxiety on pandemic fatigue was observed, as well as a reciprocal significant effect of pandemic fatigue on COVID-19 anxiety. Conclusion: The findings provide empirical evidence for policymakers, decision-makers, and clinicians studying pandemic fatigue and anxiety. It is recommended that stakeholders develop their plans and programs based on this evidence and draw appropriate conclusions from these findings.