Self-care experiences of Pakistani patients with COPD and the role of family in self-care: A phenomenological inquiry

Self-care enables patients in improving quality of life and reducing hospital admissions. Research explored the experiences of patients about breathlessness, sleep problems and complication management in chronic obstructive pulmonary disease (COPD). However, the self-care experiences and the role of the family in self-care are underexplored. This study aimed to understand the self-care experiences of patients with COPD and explore the role of the family in self-care. An interpretive phenomenological inquiry was used, and 13 patients were interviewed in 2019 from two hospitals in Pakistan. The inclusion criteria were patients above 30 years of age at any stage of COPD, who received a confirmed diagnosis of COPD and were receiving the treatment, and engaged in self-care at their homes or communities. The interviews lasted for 35–60 min. Ricoeur's interpretation theory was used for data analysis comprising steps explanation, naive understanding and in-depth understanding. Self-care emerged as a complex individual and familial endeavour affected by personal, social and economic factors. Poverty was one of the core determinants of self-care. Patients emphasised the spiritual, cultural and traditional approaches to self-care. Future research is warranted to develop better understanding of spiritual and cultural self-care and how these dimensions of self-care affect patients’ self-care behaviours.     

Transitional Care for Young People with Neurological Disorders: A Scoping Review with A Focus on Patients with Movement Disorders

Childhood-onset movement disorders represent a heterogenous group of conditions. Given the complexity of these disorders, the transition of care from pediatric to adult medicine is an important consideration. We performed a scoping review of the literature on transitional care in chronic neurological disease, exploring key transitional issues and proposed transitional care models. Our aim was to describe the current knowledge and gaps about the transition process of young adults with chronic neurological disorders, paying special attention to childhood onset movement disorders. A total of 64 articles were included in the qualitative synthesis; 56 articles reported on transitional care issues, and 8 articles reported on transitional care models. Only 2 articles included patients with movement disorders. The following 4 main transitional issues were identified following synthesis of the available literature: (1) inadequate preparation for the transition process, (2) inappropriate and inconsistent transition practices, (3) inadequate adult services, and (4) heightened emotional response surrounding transition. Of the reported transitional care models, multidisciplinary ambulatory care was the most common approach. In studies evaluating patient-related outcomes, positive health, educational, and vocational outcomes were found. The available literature provides insights on issues that can arise during transition that should be addressed to improve patient and caregiver comfort and satisfaction with care. Further research is needed to evaluate how transitional care programs affect outcomes and their cost effectiveness. More studies are required to determine the needs and outcomes specific to patients with childhood onset movement disorders. © 2020 International Parkinson and Movement Disorder Society