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Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study

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  • Javier Güeita-Rodriguez

    (Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Avenida Atenas s/n, Alcorcón, 28922 Madrid, Spain)

  • Pilar Famoso-Pérez

    (Department of Nursing, Servicio Madrileño de Salud, 28004 Madrid, Spain)

  • Jaime Salom-Moreno

    (Department of Physiotherapy, Universidad Francisco Vitoria, 28223 Madrid, Spain)

  • Pilar Carrasco-Garrido

    (Department of Medical Specialities and Public Health, Universidad Rey Juan Carlos, Alcorcón, 28922 Madrid, Spain)

  • Jorge Pérez-Corrales

    (Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Avenida Atenas s/n, Alcorcón, 28922 Madrid, Spain)

  • Domingo Palacios-Ceña

    (Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Avenida Atenas s/n, Alcorcón, 28922 Madrid, Spain)

Abstract

Rare diseases face serious sustainability challenges regarding the distribution of resources geared at health and social needs. Our aim was to describe the barriers experienced by parents of children with Rett Syndrome for accessing care resources. A qualitative case study was conducted among 31 parents of children with Rett syndrome. Data were collected through in-depth interviews, focus groups, researchers’ field notes and parents’ personal documents. A thematic analysis was performed and the Standards for Reporting Qualitative Research (SRQR) guidelines were followed. Three main themes emerged from the data: (a) essential health resources; (b) bureaucracy and social care; and (c) time management constraints. Parents have difficulties accessing appropriate health services for their children. Administrative obstacles exist for accessing public health services, forcing parents to bear the financial cost of specialized care. Time is an essential factor, which conditions the organization of activities for the entire family. Qualitative research offers insight into how parents of children with Rett syndrome experience access to resources and may help improve understanding of how Rett syndrome impacts the lives of both the children and their parents.

Suggested Citation

  • Javier Güeita-Rodriguez & Pilar Famoso-Pérez & Jaime Salom-Moreno & Pilar Carrasco-Garrido & Jorge Pérez-Corrales & Domingo Palacios-Ceña, 2020. "Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study," IJERPH, MDPI, vol. 17(12), pages 1-16, June.
    • Handle: RePEc:gam:jijerp:v:17:y:2020:i:12:p:4466-:d:374539
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    1. Marianna Cavazza & Yllka Kodra & Patrizio Armeni & Marta Santis & Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Pedro Serrano-Aguilar & Manuel Posada-de-la-Paz & Domenica Taruscio & Arr, 2016. "Social/economic costs and health-related quality of life in patients with Duchenne muscular dystrophy in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 19-29, April.
    2. Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Manuel Posada-de-la-Paz & Pedro Serrano-Aguilar & Panos Kanavos & Domenica Taruscio & Arrigo Schieppati & Georgi Iskrov & Petra Baji & Clau, 2016. "Social/economic costs and health-related quality of life in patients with Prader-Willi syndrome in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 99-108, April.
    3. Julio López-Bastida & Juan Oliva-Moreno & Renata Linertová & Pedro Serrano-Aguilar, 2016. "Social/economic costs and health-related quality of life in patients with rare diseases in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 1-5, April.
    4. Karine Chevreul & Morgane Michel & Karen Berg Brigham & Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Pedro Serrano-Aguilar & Manuel Posada-de-la-Paz & Domenica Taruscio & Arrigo Schiep, 2016. "Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 7-18, April.
    5. Aris Angelis & Panos Kanavos & Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Pedro Serrano-Aguilar & Manuel Posada-de-la-Paz & Domenica Taruscio & Arrigo Schieppati & Georgi Iskrov & Va, 2016. "Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 31-42, April.
    6. Budych, Karolina & Helms, Thomas M. & Schultz, Carsten, 2012. "How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient–physician interaction," Health Policy, Elsevier, vol. 105(2), pages 154-164.
    7. Georgi Iskrov & Itziar Astigarraga & Rumen Stefanov & Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Pedro Serrano-Aguilar & Manuel Posada-de-la-Paz & Arrigo Schieppati & Domenica Tarusc, 2016. "Social/economic costs and health-related quality of life in patients with histiocytosis in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 67-78, April.
    8. A. Kuhlmann & T. Schmidt & M. Treskova & J. López-Bastida & R. Linertová & J. Oliva-Moreno & P. Serrano-Aguilar & M. Posada-de-la-Paz & P. Kanavos & D. Taruscio & A. Schieppati & G. Iskrov & M. Péntek, 2016. "Social/economic costs and health-related quality of life in patients with juvenile idiopathic arthritis in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 79-87, April.
    9. Karine Chevreul & Coralie Gandré & Karen Berg Brigham & Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Pedro Serrano-Aguilar & Manuel Posada-de-la-Paz & Domenica Taruscio & Arrigo Schiep, 2016. "Social/economic costs and health-related quality of life in patients with fragile X syndrome in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 43-52, April.
    10. Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Pedro Serrano-Aguilar & Manuel Posada-de-la-Paz & Panos Kanavos & Domenica Taruscio & Arrigo Schieppati & Georgi Iskrov & Márta Péntek & Cl, 2016. "Social/economic costs and health-related quality of life in patients with scleroderma in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 109-117, April.
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    2. Jun Yang & Xiangyu Luo & Yixiong Xiao & Shaoqing Shen & Mo Su & Yuqi Bai & Peng Gong, 2020. "Comparing the Use of Spatially Explicit Indicators and Conventional Indicators in the Evaluation of Healthy Cities: A Case Study in Shenzhen, China," IJERPH, MDPI, vol. 17(20), pages 1-17, October.
    3. Xiaodong Di & Lijian Wang & Xiuliang Dai & Liu Yang, 2020. "Assessing the Accessibility of Home-Based Healthcare Services for the Elderly: A Case from Shaanxi Province, China," IJERPH, MDPI, vol. 17(19), pages 1-16, September.

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