Self-care Experiences of Adolescents with Spinal Muscular Atrophy

Purpose@#We examined the self-care experiences of adolescents with spinal muscle atrophy (SMA) and their perceptions of the interactions between their body and the environment. @*Methods@#We interviewed ten adolescents with SMA aged 13–18 years regarding personal care practices. Purposive sampling was conducted in two medical centers in northern Taiwan. Data were analyzed using the Giorgi analysis method. @*Results@#Four constitutions were identified: (1) limited space for independent development, (2) multiple reconstructions of self-image to improve physical ability, (3) self-care of disease, and (4) developing activity styles to accommodate social culture. @*Conclusion@#The self-care lived experiences of patients reflect dynamic changes in the body and environment. Self-existence was exhibited by adjustment, practice, and creativity of physical activity to integrate into society. Nursing staff should understand the self-care experiences and needs of adolescents with SMA to develop a database of self-care skills. This study recommended that nursing staff improve their ability to guide patients in taking care of themselves by developing body awareness self-care courses and individual care plans in response to various stages of disability to help patients delay deterioration, realize their physical potential, and promote independence and social development.

Partnership Between Families of Children with Muscular Dystrophy and Health-care Professionals: From Parents' Perspective

PURPOSE: At present, there is still controversy between parents of children with muscular dystrophy (MD) and health-care professionals on care issues. Partnerships can connect the affected children and their families to appropriate health-care services, to jointly face the care environment together and thereby improve the quality of life of children with MD. Therefore, the objective of this study was to explore partnerships between families and health-care professionals from the perspectives of parents of children with MD. METHODS: Husserl's phenomenological research was applied to explore the basic structures of parents' descriptions of MD. Through purposive sampling, we conducted in-depth interviews with parents, and analyzed the data according to the theory of Giorgi. Nineteen parents (10 mothers, 9 fathers) participated in this study. The precision of the research results was tested by applying the four standards of Lincoln and Guba. RESULTS: This study identified five constituents: feasible resources and detailed care information; the provision of an integrated medical care across systems; family and home as key elements in critical care; respect and care for family care demands; and finally, feedback and support from families. CONCLUSION: This study demonstrated that partnerships were established by health-care professionals, enhancing the care capacity of the families, developing the preventive medicine of MD, and enhancing children's potential for self-care within the families. Hospital policies should include the promotion of family partnership care. The findings can help health-care professionals recognize the life experiences of children with MD when providing medical care.