RESUMO
INTRODUCTION: The high prevalence of endogamy, or inbreeding, in northeastern Brazil, is due to historical and cultural factors, with large families living in cities far from the coast and subject to low socioeconomic and infrastructure levels. This breeding practice results in low genetic variability with an increased prevalence of rare autosomal recessive and neurodegenerative diseases, such as spinal muscular atrophy (SMA). OBJECTIVE: Understanding the impact of communicating the diagnosis of SMA on the mental health of patients and their families and the differences between the Northeast (endogamous region) and the other regions of Brazil (non-endogamous ones). METHODS: Cross-sectional study obtained through a structured questionnaire about the moment of receiving the SMA diagnosis, containing the Impact of Event Scale-Revised. RESULTS AND DISCUSSION: The sample consisted of 100 volunteers from all regions of Brazil, 47 patients diagnosed with SMA and 53 family members present at the time of the diagnosis. There was a predominance of females (83%) and homogeneity between the groups for the variables gender, age, color, education, religion, and SMA subtype (1, 2, 3, and 4). The Northeast region, representing 43% of the sample, despite being less economically favored, showed greater satisfaction with medical care and inclusion in health services, with less self-reported psychological trauma and fewer signs of post-traumatic stress disorder (PTSD) related to the moment of receiving the diagnosis. The non-endogamous regions, in turn, reported the presence of strong waves of emotion, sleep problems, feelings of irritability, anger, and the presence of bad thoughts related to this situation. CONCLUSION: The feeling of inclusion in health services and satisfaction with medical care in the endogamous region had a positive impact on the mental health of those involved, reducing psychological trauma and signs of PTSD arising from the communication of the SMA diagnosis.
Assuntos
Atrofia Muscular Espinal , Humanos , Feminino , Masculino , Atrofia Muscular Espinal/diagnóstico , Atrofia Muscular Espinal/epidemiologia , Atrofia Muscular Espinal/psicologia , Brasil/epidemiologia , Estudos Transversais , Adulto , Pessoa de Meia-Idade , Adulto Jovem , Adolescente , Inquéritos e Questionários , Comunicação , CriançaRESUMO
As doenças neurológicas são comuns em nosso meio e, muitas vezes, trazem limitações ao indivíduo, quando não, são progressivas e submetem o indivíduo ao enfrentamento diário de perdas. que culminam na finitude da vida dele. A abordagem de temas como perdas e luto antecipatório ainda é pouco difundida entre os profissionais fisioterapeutas. O presente trabalho procurou compreender o processo de reestruturação frente à crise do adoecer e a participação no tratamento, a experi~encia em relação às viv~encias de perdas e ao trabalho do profissional fisioterapeuta. Este é um estudo qualitativo que, por meio da realização de uma entrevista semi-estruturada com seis pacientes neurológicos, pretendeu compreender a vivência de pacientes neurológicos frente às suas perdas, e consequentemente, o enfrentamento delas. As respostas obtidas foram agrupadas em seis categorias de análise: não ter ciência sobre o porblema, difícil aceitação do diagnóstico, as atividades básicas são as maiores dificuldades, a adaptação às perdas é um processo, esperança de melhora, a fisioterapia auxilia no enfrentamento das perdas. Apesar de os entrevistados apresentarem quadros clínicos diversos (Doença de Parkinson, Esclerose Múltipla, Atrofia muscular Espinal e Lesão Medular Traumática), o reconhecimento dos benefícios que a fisioterapia proporciona foi unânime. Os relatos desta pesquisa nos permitem considerar que a fisioterapia ajuda os pacientes neurológicos no enfrentamento de suas perdas, especialmente as perdas físicas. A fisioterapia paliativa deve ser mais discutida, para que seja desenvolvida de forma adequada
The neurological diseases are frequent and many times cause limitations which being progressive force the person to face the daily losses which can lead to death. Approaching themes such as losses and antecipatory mourning is a rare practise among physiotherapists. The present study aimed at understanding the process of restructure when facing the crisis of the disease, the participation in the treatment, the experiences gained when dealing with losses and the work of the physiotherapist. It is a qualitative study which, through carrying out a semi-structured interview with six patients, intended to understand the life experience of neurological patients when dealing with their losses and later facing them. The answers were groupedinto six analysis categories: not knowing the problem, difficult acceptance of the diagnosis, the basic daily activities are the biggest difficulties, adaptation to the damages is a process, hope to get better, physiotherapy helps to cope with the loss. Although the interviewee presented different clinic, the regognition of the benefits given by Physiotherapy was unanimous. The accounts in this research allow us to conclude that Physiotherapy helps the neurological patients to face their losses, specially the physical ones. The palliative physiotherapy must be more discussed and studied to get better results.