RESUMEN
Introducción: la rehabilitación respiratoria (RR) se recomienda en pacientes con fibrosis quística (FQ). Durante la pandemia de COVID-19 los programas de RR debieron cerrarse o migrar a modalidades de telerehabilitación, imponiendo nuevos desafíos a pacientes y equipos de salud. El objetivo de este estudio fue explorar las percepciones de pacientes, padres y profesionales sobre la transición a la telerehabilitación respiratoria durante la pandemia de COVID-19. Método: estudio cualitativo. Se consideraron pacientes con FQ mayores de 8 años. También a padres y equipos de salud. El tamaño muestral se determinó mediante saturación teórica. Se realizaron entrevistas semiestructuradas y grupos focales vía Zoom. El análisis de datos se realizó mediante los métodos de codificación abierta y axial. El análisis se realizó utilizando el software Atlas. Ti 7.5.7. Resultados: se incluyó a 4 pacientes adultos, 1 pediátrico y 2 padres, además de 4 profesionales de equipos de salud. Existió una percepción general positiva respecto a la RR y la telerehabilitación. Entre las barreras destacó la falta de equipamiento para la telerehabilitación en domicilio y la organización diaria de los pacientes. Entre los facilitadores destacó la disponibilidad de equipos y redes que permitieran la conectividad y el apoyo familiar. Existió una valoración positiva hacia la continuidad de la telerehabilitación en la etapa post pandémica. Conclusiones: la telerehabilitación fue percibida como una alternativa viable y efectiva, sin embargo, aspectos de la conectividad, disponibilidad de equipamiento y la rutina diaria de los pacientes debe ser considerada a la hora de implementar modalidades telemáticas de atención.
Introduction: Pulmonary rehabilitation (PR) is recommended in patients with Cystic Fibrosis (CF). During the COVID-19 pandemic, PR programs had to migrate to telerehabilitation modalities, imposing new challenges for patients and health teams. The objective of this study was to explore the perceptions of patients, parents, and professionals regarding the transition to respiratory telerehabilitation experienced during the COVID-19 pandemic. Method: Qualitative study. Parents and health teams were included in the case of patients with CF over eight years old. Theoretical saturation determined the sample size. Semi-structured interviews and focus groups were conducted using the Zoom platform. Data analysis was carried out using open and axial coding methods. The analysis was performed using Atlas Ti software 7.5.7. Results: Four adult patients, one pediatric patient, two parents, and four health team professionals entered the study. There was a positive perception regarding PR and telerehabilitation. Among the barriers, the lack of equipment for telerehabilitation at home and the daily organization of patients stood out. Among the facilitators, the availability of equipment and networks that allowed connectivity and family support stood out. Patients rated the continuity of telerehabilitation in the post-pandemic stage positively. Conclusions: Telerehabilitation was perceived as a viable and effective alternative; however, aspects related to connectivity, availability of equipment, and the daily routine of patients must be considered when implementing telematics care modalities.
RESUMEN
Several studies have supported the positive effect of respiratory rehabilitation (RR) in children and adolescents (CRA) with chronic respiratory diseases (CRD); however, qualitative aspects related to the experiences and perceptions about RR have been scarcely studied. OBJECTIVE: to analyze the qualitative evidence regarding the perceptions and experiences of patients, families and professionals related to the RR of children and adolescents with CKD. METHODS: Review of qualitative studies in 5 databases. We used MeSH terms and free English-language terms grouped into three dimensions: patients, intervention, and research design. The study subjects had to be patients, their families, teachers or treating health teams. No restrictions were placed on language or year of publication. The search strategy was configured as follows: ((Cystic fibrosis) OR (Asthma) OR (Neuromuscular diseases)) AND ((Respiratory rehabilitation) OR (Exercise)) AND ((Qualitative research) OR (Phenomenology) OR (Grounded theory) OR (Ethnography)). Two independent authors analyzed atingent titles, abstracts and long texts. Finally, a qualitative description of the results was made. RESULTS: Twenty-one qualitative studies were selected, all on patients, family members, teachers or professionals treating patients with cystic fibrosis (CF), asthma or neuromuscular diseases (NMD). Perception of benefits, parental influence, enjoyment of the protocols, and time required to engage in physical activity were categories identified in all three groups. Aspects such as perceived safety on school grounds and parental stress were specific categories, highlighted in the context of asthma and CF respectively. CONCLUSION: Several general and specific factors of a qualitative nature influence the experience of children with CRD during RR. Future studies conducted in our cultural context should be conducted to confirm these results.