The challenges faced by patients with hereditary myopathy during the COVID-19 pandemic.
Int J Palliat Nurs
; 30(1): 12-19, 2024 Jan 02.
Article
em En
| MEDLINE
| ID: mdl-38308604
ABSTRACT
BACKGROUND:
Neuromuscular diseases are inherited and the prevalance of neuromuscular disease is estimated to be around 12000.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.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
COVID-19
/
Doenças Musculares
/
Doenças do Sistema Nervoso
Tipo de estudo:
Observational_studies
/
Prevalence_studies
/
Prognostic_studies
/
Qualitative_research
/
Risk_factors_studies
Limite:
Female
/
Humans
/
Male
Idioma:
En
Revista:
Int J Palliat Nurs
Assunto da revista:
ENFERMAGEM
Ano de publicação:
2024
Tipo de documento:
Article