Kim Beernaert1, Malin Lövgren2,3, Jørgen Jeppesen4, Ulla Werlauff4, Jes Rahbek4, Thomas Sejersen5, Ulrika Kreicbergs2,3. 1. End-of-Life Care Research Group, Ghent University & Vrije Universtiteit Brussel (VUB), Ghent, Belgium. 2. Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, Stockholm, Sweden. 3. Department of Women's and Children's Health, Paediatric Oncology and Haematology, Childhood Cancer Research Unit, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden. 4. National Rehabilitation Centre for Neuromuscular Diseases, Aarhus, Denmark. 5. Department of Women's and Children's Health, Paediatric Neurology, Karolinska Institutet, Karolinska University Hospital, Astrid Lindgren Children's Hospital, Stockholm, Sweden.
Abstract
OBJECTIVE: This study aims to assess the experiences and wishes of parents of children with severe spinal muscular atrophy regarding information and decision-making throughout the course of the illness. STUDY DESIGN: A full population survey, conducted in 2015, among parents of children with severe spinal muscular atrophy who were born in Denmark between January 1, 2003, and December 31, 2013. We used a study-specific questionnaire with items about experiences and wishes concerning the provision of information about diagnosis, treatment, and end-of-life care. RESULTS: Among the 47 parents that were identified, 34 parents of 21 children participated. Eleven of them were nonbereaved and 23 were bereaved parents. All parents stated that health care staff did not take any decisions without informing them. A proportion of parents indicated that they were not informed about what spinal muscular atrophy entails (32%), possible treatment options (18%), or the fact that their child would have a short life (26%) or that death was imminent (57%). Most of the bereaved parents who had wishes concerning how and where their child would pass away had their wishes fulfilled. CONCLUSIONS: The study showed that health care staff did not take treatment decisions without parents being informed. However, there is room for improvement concerning information about what spinal muscular atrophy entails, treatment options, and prognosis. Possibilities of palliative care and advance care planning should be investigated for these parents, their child, and health care staff.
OBJECTIVE: This study aims to assess the experiences and wishes of parents of children with severe spinal muscular atrophy regarding information and decision-making throughout the course of the illness. STUDY DESIGN: A full population survey, conducted in 2015, among parents of children with severe spinal muscular atrophy who were born in Denmark between January 1, 2003, and December 31, 2013. We used a study-specific questionnaire with items about experiences and wishes concerning the provision of information about diagnosis, treatment, and end-of-life care. RESULTS: Among the 47 parents that were identified, 34 parents of 21 children participated. Eleven of them were nonbereaved and 23 were bereaved parents. All parents stated that health care staff did not take any decisions without informing them. A proportion of parents indicated that they were not informed about what spinal muscular atrophy entails (32%), possible treatment options (18%), or the fact that their child would have a short life (26%) or that death was imminent (57%). Most of the bereaved parents who had wishes concerning how and where their child would pass away had their wishes fulfilled. CONCLUSIONS: The study showed that health care staff did not take treatment decisions without parents being informed. However, there is room for improvement concerning information about what spinal muscular atrophy entails, treatment options, and prognosis. Possibilities of palliative care and advance care planning should be investigated for these parents, their child, and health care staff.
Authors: Jeffrey D Edwards; Howard B Panitch; Maureen George; Anne-Marie Cirrilla; Eli Grunstein; Joanne Wolfe; Judith E Nelson; Rachel L Miller Journal: Pediatr Pulmonol Date: 2020-12-23
Authors: Gustavo Saposnik; Paola Díaz-Abós; Victoria Sánchez-Menéndez; Carmen Álvarez; María Terzaghi; Jorge Maurino; María Brañas-Pampillón; Ignacio Málaga Journal: PLoS One Date: 2022-02-15 Impact factor: 3.240