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

Laura Inhestern (), Maja Brandt, Joenna Driemeyer, Jonas Denecke, Jessika Johannsen and Corinna Bergelt
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Laura Inhestern: Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, 20246 Hamburg, Germany
Maja Brandt: Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, 20246 Hamburg, Germany
Joenna Driemeyer: Department of Pediatrics, University Medical Center Hamburg-Eppendorf, 20246 Hamburg, Germany
Jonas Denecke: Department of Pediatrics, University Medical Center Hamburg-Eppendorf, 20246 Hamburg, Germany
Jessika Johannsen: Department of Pediatrics, University Medical Center Hamburg-Eppendorf, 20246 Hamburg, Germany
Corinna Bergelt: Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, 20246 Hamburg, Germany

IJERPH, 2023, vol. 20, issue 7, 1-10

Abstract: 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.

Keywords: spinal muscular atrophy; pediatric; children; genetics; treatment; outcome (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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