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

Author

Listed:
  • 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
    Department of Medical Psychology, University Medicine Greifswald, 17475 Greifswald, Germany)

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.

Suggested Citation

  • Laura Inhestern & Maja Brandt & Joenna Driemeyer & Jonas Denecke & Jessika Johannsen & Corinna Bergelt, 2023. "Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy," IJERPH, MDPI, vol. 20(7), pages 1-10, March.
    • Handle: RePEc:gam:jijerp:v:20:y:2023:i:7:p:5360-:d:1113283
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    References listed on IDEAS

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    1. Danielle B. Rice & Andrea Carboni-Jiménez & Mara Cañedo-Ayala & Kimberly A. Turner & Matthew Chiovitti & Alexander W. Levis & Brett D. Thombs, 2020. "Perceived Benefits and Facilitators and Barriers to Providing Psychosocial Interventions for Informal Caregivers of People with Rare Diseases: A Scoping Review," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 13(5), pages 471-519, October.
    2. Michelle A. Farrar & Kate A. Carey & Sarah-Grace Paguinto & Nadine A. Kasparian & Richard Abreu Lourenço, 2020. "“The Whole Game is Changing and You’ve Got Hope”: Australian Perspectives on Treatment Decision Making in Spinal Muscular Atrophy," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 13(4), pages 389-400, August.
    3. Vanessa C. Delisle & Stephanie T. Gumuchian & Danielle B. Rice & Alexander W. Levis & Lorie A. Kloda & Annett Körner & Brett D. Thombs, 2017. "Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 10(3), pages 283-293, June.
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