The diagnosis of a pediatric neuromuscular disease has a psychological impact on parents. The study aimed to describe mental health and psychological adaptation in parents of children with neuromuscular diseases. The evaluation of parents (n = 35) through the Psychological Adaptation Scale and Adult Self-Report Questionnaire showed that (a) 82.4% of the participants had an adequate level of psychological adaptation; (b) parents presented high levels of mental health problems, (c) significant correlations were found between the mental health problems and psychological adaptation. This study highlights the need for psychological interventions which aim to promote psychological adaptation to NMD diagnoses and protect parental mental health.

Caregivers’ emotions and finances are affected by the deterioration of functional capacity of patients with Duchenne muscular dystrophy (DMD), both in Mexico and Spain. Patient associations may reduce this impact on caregivers. This study aims to study the role of two models of associations, inspired by two different cultural models, in how the services they provide can help decrease the emotional and financial impact on the caregivers of children with DMD. The sample consisted of 34 caregivers from Mexico and 40 from Spain recruited from Spanish hospitals and rare disease organizations in Spain and Mexico. The instruments used consisted of a sociodemographic and socioeconomic questionnaire, the CarerQol-7D, the PHQ-15, the Zarit Caregiver’s Burden Scale and the SWLS. The results showed that caregivers in Mexico are in better physical and psychological health than caregivers in Spain. They also receive more subsidies than those in Spain. Caregivers in Mexico have a greater well-being and are less affected by the economic impact of the disease due to the associations’ day-to-day work and the fact that they generate a network of health services that they make available to the patient free of charge. These differences may also be attributable to cultural issues and to the fact that Mexico has a deeply established culture of support.

The present study is a systematic review of the research on family functioning in families who have a child with a rare disease. The research was carried out using the databases Pubmed, EBSCO, and Google Scholar, following PRISMA guidelines. After applying the inclusion and exclusion criteria to the 460 articles initially found, a total of 49 articles made up the final sample. The following topics regarding family functioning were identified: impact of diagnosis; caregiver’s role and responsibilities; family functioning; impact on the emotional sphere; effects on marital and social life; coping strategies; family, and care and health system. The results of this study may provide justification for considering factors associated with family functioning when diagnosing a rare disease and deciding on treatment.

Los cuidadores principales de familiares que se encuentran bajo tratamiento paliativo brindan una atención significativa, y como resultado, su calidad de vida puede verse negativamente afectada. Se llevó a cabo una revisión sistemática para sintetizar la evidencia sobre la calidad de vida de estos cuidadores. Se utilizaron la base de datos Pubmed y la biblioteca digital de la Universidad Católica Argentina. Se revisaron 13 artículos que plantearon las siguientes temáticas: calidad de vida general, impacto en las dimensiones física, emocional, social y espiritual, relación entre el género del cuidador y la calidad de vida. Se evidencia en la literatura revisada la importancia de una adecuada evaluación de los signos y síntomas en los cuidadores familiares con el fin de poder brindar asistencia integral para favorecer su calidad de vida.

Objectives The COVID-19 pandemic has affected the entire population, especially the population with chronic diseases. This study aimed to describe the quality of life of children and adults with neuromuscular diseases and their caregivers during the COVID-19 pandemic. Methods A observational correlational study was conducted. Forty-seven participants, including adults with NMD and caregivers of children with NMD, took part in the study. The WHOQOL-BREF and PedsQL 4.0 GCS and FIM scales were used. Results The PedsQL indicated a mean of 55.85 (SD = 22.05) for children, and a mean of 55.76 (SD = 16.72) for caregivers. Adults reported a mean of 67 (SD = 22.5) for their general perception of quality of life, and a M = 53 (SD = 28.25) for their perception on health. Conclusions The results showed regular to low quality of life of all children, adults, and caregivers, mainly in the physical dimension for people with neuromuscular diseases, and in the concerns dimension for caregivers. These results warn about the physical and psychological vulnerability situation in which this population finds itself.