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Challenges in the Management of Home-Based Care Experienced by a Caregiver with Autism Spectrum Disorder

We describe the case of a 37-year-old woman with autism spectrum disorder (ASD) who lived with a mother with end-stage breast cancer and a visually impaired father. She was the main caregiver for her mother, who was receiving home-based palliative care. The caregiver needed training on communication...

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Autores principales: Ohsawa, Sayaka, Yoshimoto, Hisashi, Ohsawa, Ryo, Takahashi, Satoko, Yokoya, Shoji
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Mary Ann Liebert, Inc., publishers 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8675273/
https://www.ncbi.nlm.nih.gov/pubmed/34927158
http://dx.doi.org/10.1089/pmr.2021.0043
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author Ohsawa, Sayaka
Yoshimoto, Hisashi
Ohsawa, Ryo
Takahashi, Satoko
Yokoya, Shoji
author_facet Ohsawa, Sayaka
Yoshimoto, Hisashi
Ohsawa, Ryo
Takahashi, Satoko
Yokoya, Shoji
author_sort Ohsawa, Sayaka
collection PubMed
description We describe the case of a 37-year-old woman with autism spectrum disorder (ASD) who lived with a mother with end-stage breast cancer and a visually impaired father. She was the main caregiver for her mother, who was receiving home-based palliative care. The caregiver needed training on communication and task management so that she could manage the communication with home care staff and perform more house chores. It was also necessary to share information with home care staff about ASD and how to treat her with understanding and respect. Although most support for people with ASD focuses on schools and workplaces, to offer successful end-of-life care at home, medical and home staff need to understand and communicate well with people with ASD and provide multiple types of support. Research, guidebooks, and visuals about main caregivers who have ASD and improving the inclusivity among staff members are necessary for providing successful home care and meeting caregivers' and patients' needs and expectations.
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spelling pubmed-86752732021-12-17 Challenges in the Management of Home-Based Care Experienced by a Caregiver with Autism Spectrum Disorder Ohsawa, Sayaka Yoshimoto, Hisashi Ohsawa, Ryo Takahashi, Satoko Yokoya, Shoji Palliat Med Rep Case Discussions In Palliative We describe the case of a 37-year-old woman with autism spectrum disorder (ASD) who lived with a mother with end-stage breast cancer and a visually impaired father. She was the main caregiver for her mother, who was receiving home-based palliative care. The caregiver needed training on communication and task management so that she could manage the communication with home care staff and perform more house chores. It was also necessary to share information with home care staff about ASD and how to treat her with understanding and respect. Although most support for people with ASD focuses on schools and workplaces, to offer successful end-of-life care at home, medical and home staff need to understand and communicate well with people with ASD and provide multiple types of support. Research, guidebooks, and visuals about main caregivers who have ASD and improving the inclusivity among staff members are necessary for providing successful home care and meeting caregivers' and patients' needs and expectations. Mary Ann Liebert, Inc., publishers 2021-11-17 /pmc/articles/PMC8675273/ /pubmed/34927158 http://dx.doi.org/10.1089/pmr.2021.0043 Text en © Sayaka Ohsawa et al., 2021; Published by Mary Ann Liebert, Inc. https://creativecommons.org/licenses/by/4.0/This Open Access article is distributed under the terms of the Creative Commons License [CC-BY] (http://creativecommons.org/licenses/by/4.0 (https://creativecommons.org/licenses/by/4.0/) ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Case Discussions In Palliative
Ohsawa, Sayaka
Yoshimoto, Hisashi
Ohsawa, Ryo
Takahashi, Satoko
Yokoya, Shoji
Challenges in the Management of Home-Based Care Experienced by a Caregiver with Autism Spectrum Disorder
title Challenges in the Management of Home-Based Care Experienced by a Caregiver with Autism Spectrum Disorder
title_full Challenges in the Management of Home-Based Care Experienced by a Caregiver with Autism Spectrum Disorder
title_fullStr Challenges in the Management of Home-Based Care Experienced by a Caregiver with Autism Spectrum Disorder
title_full_unstemmed Challenges in the Management of Home-Based Care Experienced by a Caregiver with Autism Spectrum Disorder
title_short Challenges in the Management of Home-Based Care Experienced by a Caregiver with Autism Spectrum Disorder
title_sort challenges in the management of home-based care experienced by a caregiver with autism spectrum disorder
topic Case Discussions In Palliative
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8675273/
https://www.ncbi.nlm.nih.gov/pubmed/34927158
http://dx.doi.org/10.1089/pmr.2021.0043
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