Amyotrophic lateral sclerosis in Argentina: unveiling the burden of treatment through patient and caregiver perspectives.

PURPOSE: To examine the burden of treatment (BoT) experienced by people with Amyotrophic Lateral Sclerosis (ALS) in Argentina. METHODS: Qualitative methodological design based on semi-structured interviews. Nineteen semi-structured interviews were conducted (PwALS = 7, informal caregivers= 12). The interview guides were designed based on the literature and BoT theory. Data were analysed following a framework analysis approach. RESULTS: The research highlighted the arduous journey toward obtaining a diagnosis, marked by delays influenced by healthcare system inefficiencies, lack of disease awareness and pandemic-related anxiety. Receiving the diagnosis was a destabilising experience, triggering the need to reframe self-identity, a new reality. As the disease progressed, patients encountered significant challenges in their daily activities and basic tasks, affecting their ability to work, communicate, and manage personal care. The burden extended beyond the patients to their primary caregivers. Access to specialised care, bureaucratic complexities in securing treatment, and the financial impact of managing the disease posed substantial challenges. CONCLUSION: The findings offer valuable insights into the experiences of PwALS and their caregivers in Argentina. They underscore the need for increased disease awareness, improved access to specialised care, and enhanced support networks to alleviate the burdens PwALS and their families face.

Streamlined pathways for patients with amyotrophic lateral sclerosis in Argentina are necessary to ensure timely access to comprehensive support and interventions, laying the foundation for holistic rehabilitation.There is a need to encourage clear communication between healthcare providers and patients to establish ongoing dialogue incorporating emotional, social, and psychological aspects into rehabilitation, aligning with patient-centric approaches.There is a need to develop and implement adaptive rehabilitation strategies to sustain independence and enhance quality of life for amyotrophic lateral sclerosis patients, addressing the physical, emotional, and social implications of the disease's progression.Rehabilitation professionals should advocate for systemic improvements to ensure equitable access to therapies and support alleviate financial burdens, enabling a comprehensive, patient-focused approach to rehabilitation.

Barriers and facilitators to vaccination in Latin America: a thematic synthesis of qualitative studies.

Vaccines are often undervalued or underused for a variety of reasons, and vaccine hesitancy is a global challenge that threatens vaccine acceptance and the goals of immunization programs. This review aimed to describe the barriers and facilitators to vaccination in Latin America. The study design was a systematic review and thematic synthesis of qualitative studies reporting on the knowledge or attitudes of adults, parents of children at vaccination age, adolescents and health professionals towards vaccination in Latin America. The databases searched were PubMed, CENTRAL, Scopus, LILACS, SciELO, and CINAHL. A total of 56 studies were included. Facilitators included vaccination being recognized as an effective strategy for preventing infectious diseases and as a requirement for access to social assistance programs, schooling or employment. Recommendations from health professionals and positive experiences with health services were also identified as facilitators. The main barriers were lack of information or counseling, structural problems such as shortages of vaccines and limited hours of operation, the inability to afford over-the-counter vaccines or transportation to health facilities, certain religious beliefs, misconceptions and safety concerns. Qualitative research can contribute to understanding perceptions and decision-making about vaccination and to designing policies and interventions to increase coverage.

Barriers and facilitators to vaccination in Latin America: a thematic synthesis of qualitative studies / Barreras y facilitadores de la vacunación en América Latina: síntesis temática de estudios cualitativos / Barreiras e facilitadores para a vacinação na América Latina: síntese temática de estudos qualitativos

Vaccines are often undervalued or underused for a variety of reasons, and vaccine hesitancy is a global challenge that threatens vaccine acceptance and the goals of immunization programs. This review aimed to describe the barriers and facilitators to vaccination in Latin America. The study design was a systematic review and thematic synthesis of qualitative studies reporting on the knowledge or attitudes of adults, parents of children at vaccination age, adolescents and health professionals towards vaccination in Latin America. The databases searched were PubMed, CENTRAL, Scopus, LILACS, SciELO, and CINAHL. A total of 56 studies were included. Facilitators included vaccination being recognized as an effective strategy for preventing infectious diseases and as a requirement for access to social assistance programs, schooling or employment. Recommendations from health professionals and positive experiences with health services were also identified as facilitators. The main barriers were lack of information or counseling, structural problems such as shortages of vaccines and limited hours of operation, the inability to afford over-the-counter vaccines or transportation to health facilities, certain religious beliefs, misconceptions and safety concerns. Qualitative research can contribute to understanding perceptions and decision-making about vaccination and to designing policies and interventions to increase coverage.

Las vacunas suelen estar subvaloradas o desaprovechadas por diversas razones. La vacilación ante las vacunas es un desafío global y representa una amenaza para la aceptación de las vacunas y para los objetivos de los programas de inmunización. El objetivo de esta revisión es describir las barreras y los facilitadores de la vacunación en América Latina. El diseño del estudio fue una revisión sistemática y una síntesis temática de estudios cualitativos sobre conocimientos o actitudes de adultos, padres de niños en edad de vacunación, adolescentes y profesionales de la salud sobre la vacunación en América Latina. Las bases de datos analizadas fueron PubMed, CENTRAL, Scopus, LILACS, SciELO y CINAHL. Se incluyeron 56 estudios. Los facilitadores incluyeron la idea de que la vacunación era reconocida como una estrategia eficaz para prevenir enfermedades infecciosas y un requisito para el acceso a la asistencia social, la escolaridad o el empleo. También se identificaron como factores facilitadores las recomendaciones de los profesionales de la salud y las experiencias positivas con los servicios de salud. Los principales obstáculos fueron la falta de información o asesoramiento, problemas estructurales como la escasez de vacunas y los horarios de funcionamiento limitados, la imposibilidad de pagar vacunas no provistas de forma gratuita o de desplazarse a los centros de salud, ciertas creencias religiosas, conceptos erróneos sobre las vacunas y preocupaciones por la seguridad. La investigación cualitativa puede contribuir a la comprensión de las percepciones y a la toma de decisiones sobre la vacunación y al desarrollo de políticas e intervenciones para aumentar la cobertura de vacunación.

As vacinas são frequentemente subvalorizadas ou subutilizadas por uma série de razões. A hesitação vacinal é um desafio global, sendo uma ameaça à aceitação das vacinas e aos objetivos dos programas de imunização. O objetivo desta revisão é descrever barreiras e facilitadores para a vacinação na América Latina. O desenho do estudo foi uma revisão sistemática e síntese temática de estudos qualitativos sobre conhecimento ou atitudes de adultos, pais de crianças em idade de vacinação, adolescentes e profissionais de saúde sobre vacinação na América Latina. As bases de dados analisadas foram PubMed, CENTRAL, Scopus, LILACS, SciELO e CINAHL. Foram incluídos 56 estudos. Os facilitadores incluíram a ideia de que a vacinação era reconhecida como uma estratégia eficaz para prevenir doenças infecciosas e um requisito para o acesso à assistência social, escolaridade ou emprego. Além disso, recomendações de profissionais de saúde e experiências positivas com serviços de saúde também foram identificados como fatores facilitadores. Os principais obstáculos foram a falta de informação ou aconselhamento, problemas estruturais como escassez de vacinas e horário limitado de funcionamento, incapacidade de comprar vacinas pagas ou se transportar para unidades de saúde, certas crenças religiosas, concepções erradas sobre vacinas e preocupações de segurança. A pesquisa qualitativa pode contribuir para a compreensão das percepções e tomadas de decisão sobre a vacinação e para o desenvolvimento de políticas e intervenções para aumentar a cobertura vacinal.

Theory-driven, rapid formative research on quality improvement intervention for critical care of patients with COVID-19 in Argentina.

The challenges of implementing interventions in healthcare settings have been more apparent during the COVID-19 pandemic. This pre-implementation evaluation used a rapid qualitative approach to explore barriers and facilitators to an intervention in intensive care units in Argentina, aimed to promote the use of personal protection equipment, provide emotional support for professionals, and achieve patient flow goals. Data were collected using semi-structured interviews with health professionals of 15 public hospitals in Argentina. Normalization Process Theory was used to guide content analysis of the data. Participants identified potential barriers such as the incorporation of non-specialist staff, shortage of resources, lack of communication between groups and shifts. Potential facilitators were also identified: regular feedback and communication related to implementation, adequate training for new and non-specialist staff, and incentives (e.g., scholarships). The immediacy of the pandemic demanded rapid qualitative research, sharing actionable findings in real time.