Parental asthma and childhood asthma phenotypes: maternal associations with persistent asthma.

The aim of nursing care is to enable patients to live a dignified life that is responsive to their individual needs. This typically involves aspects such as communication, social participation, activity, mobility, and physical contact. However, for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), these principles are applicable only within the limits of their highly variable and fluctuating tolerance to exertion, as dictated by the disease. For severely ill patients, in particular, this tolerance is extremely low. Care interventions that benefit patients in other healthcare settings can significantly worsen the condition of patients with ME/CFS and are therefore not applicable. The central clinical characteristic is post-exertional malaise (PEM), which plays a pivotal role in all care-related decisions for ME/CFS [–]. This results in a nursing and medical approach that differs fundamentally from established, activation-oriented care models. It requires disease-specific knowledge as well as an awareness of each patient’s individual limits. However, this approach has largely been absent from formal nursing and medical training programs thus far and must therefore be learned specifically. At the same time, the burden on caregivers is considerable. It stems from the extreme demands of caring for seriously ill patients, who often require 24-hour availability, as well as from the severity, duration, and uncertain prognosis of the illness. Additionally, there is often a lack of understanding of the illness within the patient’s social circle, as well as insufficient support from health and social welfare systems. Under these conditions, not only the patients but also the family caregivers often reach—and exceed—the limits of their resilience. In this situation, clearly structured routines and a personalized care plan are vital tools for providing reassurance to both patients and caregivers and for promoting a sound understanding of the disease. Despite significant individual differences, many caregiving challenges are similar, such as those related to nutrition, oral care, and personal hygiene. Based on practical experience, specific measures and adaptable approaches have been developed for these aspects of care.