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Objective: The aim of this study was to develop and psychometrically test the properties of the Self-care in Motor Neuron Disease (SCMND) Index., Methods: This instrument development and validation study was conducted in 3 phases. The first is to identify self-care behaviors in people with motor neuron disease (MND), and the second is to evaluate the content validity of the SCMND Index. Then, between March 2017 and March 2018, the tool was administered to 107 people with MND for psychometric tests., Results: The SCMND Index was developed based on the middle-range theory of self-care of chronic illness, including 15 self-care behaviors related to respiration, nutrition, mobility, medication, medical visits, and complication management. Content validity was excellent. Data analysis suggests that the instrument has a good internal consistency in all 3 domains and excellent reproducibility. Increased self-care behaviors' median values were associated with mechanical ventilation, cough assistance, and dysphagia. Domains differed significantly based on access (maintenance), hospital admissions (monitoring and management), and respiratory infection (management)., Conclusions: Self-care is a patient-centered outcome, and it is a key point of healthcare. Results suggest that the SCMND Index is useful for both clinicians and researchers to evaluate self-care in MND.

Introduction: Self-care is a crucial aspect in the management of people with motor neuron disease (MND). Nurses and healthcare professionals must know the processes used by patients in performing self-care to identify problems and help them. Decision-making processes, self-understanding, and political and social support influence the self-care process in chronic diseases. Little is known about the self-care process in MND., Objective: The aim of this study was to gain insight on the self-care processes in people with MND., Method: A grounded theory method was chosen for this study. Data from interviews were gathered, and a simultaneous comparative analysis was conducted to identify categories and codes., Results: Twenty-one people with spinal muscular atrophy and amyotrophic lateral sclerosis participated in the study. Five categories were identified as grounded in the data. The process starts from "being yourself in the care," and it develops thanks to "growing and changing" and with a "thinking about the future" approach. "Family role" and "you and who helps you" categories affect the process itself., Conclusion: The self-care process in people with MND is not seen in a daily perspective but changes with the evolution of the disease. For the growing patients with MND, changing, accepting and controlling the disease while deciding autonomously are the foundations of the process.

Introduction: Self-care is a crucial aspect in the management of chronic diseases. People with motor neuron disease (MND) live with a chronic degenerative condition in rapid evolution, which leads them to high dependencies. During their illness, they must apply several behaviors including adherence to ventilation and nutritional therapy., Objective: The purpose of this review is to systematically explore the concept of self-care for people with MND., Method: An integrative review of the literature has been conducted. The electronic databases CINAHL, PubMed, and SCOPUS were searched., Results: Fifteen articles met the inclusion criteria and were reviewed; 7 of them discuss decision-making process and adherence to ventilation and nutritional therapy. Five of them discuss strategies used by people with MND to optimize living with this illness. Four of them discuss care and monitoring behaviors performed and recommended to people with MND. No studies focused on self-care in people with MND was identified in the literature., Conclusions: The concept of self-care in people with MND is related to inventiveness, to adaptability, and to dependence. Further studies seem to be needed to understand the concept of self-care in this population.