Abstract
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease without a cure, but multidisciplinary treatment can maintain the quality of life (QOL) of persons with ALS (PALS). Despite health professionals possibly being affected by ALS in their care roles, little is known about the impact of ALS care on these professionals. To analyze the effects of interactions between PALS and Nursing/Psychology students. Over 12 weeks, 16 student pairs performed weekly 60-minute home visits to 16 PALS. Instruments used for analyses were the McGill Quality of Life Questionnaire for the PALS; and the Draw-a-Person test and the Desiderative Questionnaire for the students. All instruments were applied twice: at the beginning (pre-first visit) and at the end of the study (post-12 visits). After 12 weeks, there was not a significant change in total QOL or its five domains (existential wellbeing, physical wellbeing, psychological wellbeing, physical symptoms, and support). Existential wellbeing/support domains contributed most to the QOL of the PALS (pre-first visit and post-12 visits). Students showed anxiety/impulsivity but preserved adequacy to reality, logical thinking and global perception with regard to the PALS. We found that students were psychologically fragile in some subgroups/moments. Students' visits to PALS may contribute to the maintenance of the QOL of the patients. Additionally, visits, with psychological support for the students, seem safe and could contribute to the students' psychological maturation as health professionals. Additional psychological support may be necessary for some students in fragile subgroups/moments.
Highlights
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease without a cure, but multidisciplinary treatment can maintain the quality of life (QOL) of persons with ALS (PALS)
Procedures We prospectively investigated the effects of 12 home visits to PALS performed weekly by pairs of students
PALS and quality of life Most PALS in this study were in their sixth decade of life, similar to the characteristics of PALS worldwide, but there were fewer men than is usually reported[24]
Summary
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease without a cure, but multidisciplinary treatment can maintain the quality of life (QOL) of persons with ALS (PALS). Existential wellbeing/support domains contributed most to the QOL of the PALS (pre-first visit and post-12 visits). Visits, with psychological support for the students, seem safe and could contribute to the students’ psychological maturation as health professionals. Additional psychological support may be necessary for some students in fragile subgroups/moments. Métodos: Durante 12 semanas, 16 pares de estudantes realizaram visitas domiciliares semanais de 60 minutos a 16 pessoas com ELA. Instrumentos utilizados nas análises foram McGill QOL para pessoas com ELA e Desenhe uma Pessoa e Questionário Desiderativo para estudantes, aplicados no início (pré-primeira visita) e final do estudo (pós-12 visitas). Bem-estar existencial e suporte contribuíram mais para QOL de pessoas com ELA (pré-primeira visita e pós-12 visitas). Conclusões: Visitas de estudantes a pessoas com ELA podem contribuir para a manutenção da QOL. Suporte psicológico adicional pode ser necessário para alguns estudantes em subgrupos/momentos frágeis
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