Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy
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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.
in: INT J ENV RES PUB HE, Jahrgang 20, Nr. 7, 31.03.2023, S. 5360.Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung
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TY - JOUR
T1 - Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy
AU - Inhestern, Laura
AU - Brandt, Maja
AU - Driemeyer, Joenna
AU - Denecke, Jonas
AU - Johannsen, Jessika
AU - Bergelt, Corinna
PY - 2023/3/31
Y1 - 2023/3/31
N2 - 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.
AB - 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.
KW - Humans
KW - Child
KW - Muscular Atrophy, Spinal
KW - Health Personnel
KW - Patient Care Team
KW - Surveys and Questionnaires
KW - Delivery of Health Care
U2 - 10.3390/ijerph20075360
DO - 10.3390/ijerph20075360
M3 - SCORING: Journal article
C2 - 37047974
VL - 20
SP - 5360
JO - INT J ENV RES PUB HE
JF - INT J ENV RES PUB HE
SN - 1660-4601
IS - 7
ER -
