Experiences of Health Care and Psychosocial Needs in Parents of Children with Spinal Muscular Atrophy
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- 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.
- 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.
- 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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Keywords
spinal muscular atrophy; pediatric; children; genetics; treatment; outcome;All these keywords.
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