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Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy

Spinal muscular atrophy (SMA) is a neurodegenerative disorder that is characterized by progressive weakness, respiratory insufficiency, and dysphagia. Due to symptom burden and disease progress, its care management and impact on daily life can severely burden the families of affected children. The o...

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Autores principales: Inhestern, Laura, Brandt, Maja, Driemeyer, Joenna, Denecke, Jonas, Johannsen, Jessika, Bergelt, Corinna
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10094281/
https://www.ncbi.nlm.nih.gov/pubmed/37047974
http://dx.doi.org/10.3390/ijerph20075360
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author Inhestern, Laura
Brandt, Maja
Driemeyer, Joenna
Denecke, Jonas
Johannsen, Jessika
Bergelt, Corinna
author_facet Inhestern, Laura
Brandt, Maja
Driemeyer, Joenna
Denecke, Jonas
Johannsen, Jessika
Bergelt, Corinna
author_sort Inhestern, Laura
collection PubMed
description Spinal muscular atrophy (SMA) is a neurodegenerative disorder that is characterized by progressive weakness, respiratory insufficiency, and dysphagia. Due to symptom burden and disease progress, its care management and impact on daily life can severely burden the families of affected children. The objectives of this study are (1) to explore the health care experiences and (2) to investigate the psychosocial needs of the parents of children with SMA. In total, 29 parents of patients with SMA participated in our study. All children received supportive therapy (e.g., physiotherapy) and most were dependent on medical equipment. Parents perceived the health care positively regarding team quality, communication and access to medical care. An assessment of the impact of the child’s health on the family (e.g., stressors, burden, consequences) is not routinely integrated into care. On average, parents reported low to medium levels of psychosocial needs. Due to the complex health care needs of SMA patients, the health care experiences of parents can provide relevant information on care delivery. To enhance the inclusion of psychosocial and emotional issues, as well as family impact, into routine health care, health care providers should be sensitive towards parental needs for consistency in the health care team and emotional aspects and, if applicable, address them proactively.
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spelling pubmed-100942812023-04-13 Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy Inhestern, Laura Brandt, Maja Driemeyer, Joenna Denecke, Jonas Johannsen, Jessika Bergelt, Corinna Int J Environ Res Public Health Article Spinal muscular atrophy (SMA) is a neurodegenerative disorder that is characterized by progressive weakness, respiratory insufficiency, and dysphagia. Due to symptom burden and disease progress, its care management and impact on daily life can severely burden the families of affected children. The objectives of this study are (1) to explore the health care experiences and (2) to investigate the psychosocial needs of the parents of children with SMA. In total, 29 parents of patients with SMA participated in our study. All children received supportive therapy (e.g., physiotherapy) and most were dependent on medical equipment. Parents perceived the health care positively regarding team quality, communication and access to medical care. An assessment of the impact of the child’s health on the family (e.g., stressors, burden, consequences) is not routinely integrated into care. On average, parents reported low to medium levels of psychosocial needs. Due to the complex health care needs of SMA patients, the health care experiences of parents can provide relevant information on care delivery. To enhance the inclusion of psychosocial and emotional issues, as well as family impact, into routine health care, health care providers should be sensitive towards parental needs for consistency in the health care team and emotional aspects and, if applicable, address them proactively. MDPI 2023-03-31 /pmc/articles/PMC10094281/ /pubmed/37047974 http://dx.doi.org/10.3390/ijerph20075360 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Inhestern, Laura
Brandt, Maja
Driemeyer, Joenna
Denecke, Jonas
Johannsen, Jessika
Bergelt, Corinna
Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy
title Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy
title_full Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy
title_fullStr Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy
title_full_unstemmed Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy
title_short Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy
title_sort experiences of health care and psychosocial needs in parents of children with spinal muscular atrophy
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10094281/
https://www.ncbi.nlm.nih.gov/pubmed/37047974
http://dx.doi.org/10.3390/ijerph20075360
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