Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiences
People living with rare diseases had a high risk of negative health outcomes due to COVID-19. Pandemic preparedness will ensure best practice procedures and optimal outcomes during future pandemic events. This paper sought to understand the needs of children with rare diseases during the COVID-19 pa...
Saved in:
| Main Authors: | , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2024-01-01
|
| Series: | Rare |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S295000872400022X |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1846117488047161344 |
|---|---|
| author | Jessica Keeley Aysha Stroobach Meg Huston Andrew Wilson Jenny Lam Adelaide Withers Cornelia van Veldhuisen Gareth Baynam Jenny Downs |
| author_facet | Jessica Keeley Aysha Stroobach Meg Huston Andrew Wilson Jenny Lam Adelaide Withers Cornelia van Veldhuisen Gareth Baynam Jenny Downs |
| author_sort | Jessica Keeley |
| collection | DOAJ |
| description | People living with rare diseases had a high risk of negative health outcomes due to COVID-19. Pandemic preparedness will ensure best practice procedures and optimal outcomes during future pandemic events. This paper sought to understand the needs of children with rare diseases during the COVID-19 pandemic to inform preparation for future pandemic and disaster events. First, impacts and outcomes from the COVID-19 pandemic on people living with rare disease were identified in the literature. The literature demonstrated that the COVID-19 pandemic had significant and multiple impacts on people with rare diseases. Second, a qualitative descriptive study was conducted, involving members of 17 families with a child with a rare neuromuscular disorder in 2021, to explore COVID-19 pandemic experiences. Qualitative data coded to Bronfenbrenner’s socio-ecological systems model and described impacts on the child’s physical (e.g., respiratory infections), mental (e.g., anxiety), and social (e.g., maintaining connections) health and wellbeing. Families reported resilience and risk factors in their interactions with health and therapy services, and education. Families valued diseases specific information and heightened awareness of infection control across the community. Third, public health guidelines for emergency preparedness were examined to inform recommendations for pandemic and disaster preparedness for people living with rare diseases. Guided by the literature, qualitative data and disaster management frameworks, recommendations that aim to prevent diagnostic delay, optimise coordination of health and social supports, improve education, planning and training, and maintain research and development were identified. The importance of pandemic preparedness for children with rare diseases cannot be understated. Risk and resilience factors in the context of highly individual requirements inform lessons for children living with rare diseases. This study informs future policy and procedure preparation for future pandemic events and other disasters to optimise healthcare of children with rare diseases. |
| format | Article |
| id | doaj-art-637ce87cd5384d2f967dad04862a7fd9 |
| institution | Kabale University |
| issn | 2950-0087 |
| language | English |
| publishDate | 2024-01-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Rare |
| spelling | doaj-art-637ce87cd5384d2f967dad04862a7fd92024-12-18T08:55:36ZengElsevierRare2950-00872024-01-012100039Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiencesJessica Keeley0Aysha Stroobach1Meg Huston2Andrew Wilson3Jenny Lam4Adelaide Withers5Cornelia van Veldhuisen6Gareth Baynam7Jenny Downs8Telethon Kids Institute, Perth, Western Australia, AustraliaTelethon Kids Institute, Perth, Western Australia, Australia; Curtin School of Allied Health, Faculty of Health Sciences, Curtin University, Perth, Western Australia, AustraliaTelethon Kids Institute, Perth, Western Australia, Australia; Curtin School of Allied Health, Faculty of Health Sciences, Curtin University, Perth, Western Australia, AustraliaTelethon Kids Institute, Perth, Western Australia, Australia; Curtin School of Allied Health, Faculty of Health Sciences, Curtin University, Perth, Western Australia, Australia; Department of Respiratory and Sleep Medicine, Perth Children’s Hospital, Perth, Western Australia, AustraliaTelethon Kids Institute, Perth, Western Australia, AustraliaTelethon Kids Institute, Perth, Western Australia, Australia; Curtin School of Allied Health, Faculty of Health Sciences, Curtin University, Perth, Western Australia, Australia; Department of Respiratory and Sleep Medicine, Perth Children’s Hospital, Perth, Western Australia, AustraliaRare Care Centre, Perth Children’s Hospital, Perth, Western Australia, Australia; Refugee Health Service, Perth Children’s Hospital, Perth, Western Australia, AustraliaTelethon Kids Institute, Perth, Western Australia, Australia; Rare Care Centre, Perth Children’s Hospital, Perth, Western Australia, Australia; Western Australian Register of Developmental Anomalies, King Edward Memorial Hospital, Perth, Western Australia, AustraliaTelethon Kids Institute, Perth, Western Australia, Australia; Curtin School of Allied Health, Faculty of Health Sciences, Curtin University, Perth, Western Australia, Australia; Correspondence to: Telethon Kids Institute, University of Western Australia, PO Box 855, West Perth, Western Australia, 6872 Australia.People living with rare diseases had a high risk of negative health outcomes due to COVID-19. Pandemic preparedness will ensure best practice procedures and optimal outcomes during future pandemic events. This paper sought to understand the needs of children with rare diseases during the COVID-19 pandemic to inform preparation for future pandemic and disaster events. First, impacts and outcomes from the COVID-19 pandemic on people living with rare disease were identified in the literature. The literature demonstrated that the COVID-19 pandemic had significant and multiple impacts on people with rare diseases. Second, a qualitative descriptive study was conducted, involving members of 17 families with a child with a rare neuromuscular disorder in 2021, to explore COVID-19 pandemic experiences. Qualitative data coded to Bronfenbrenner’s socio-ecological systems model and described impacts on the child’s physical (e.g., respiratory infections), mental (e.g., anxiety), and social (e.g., maintaining connections) health and wellbeing. Families reported resilience and risk factors in their interactions with health and therapy services, and education. Families valued diseases specific information and heightened awareness of infection control across the community. Third, public health guidelines for emergency preparedness were examined to inform recommendations for pandemic and disaster preparedness for people living with rare diseases. Guided by the literature, qualitative data and disaster management frameworks, recommendations that aim to prevent diagnostic delay, optimise coordination of health and social supports, improve education, planning and training, and maintain research and development were identified. The importance of pandemic preparedness for children with rare diseases cannot be understated. Risk and resilience factors in the context of highly individual requirements inform lessons for children living with rare diseases. This study informs future policy and procedure preparation for future pandemic events and other disasters to optimise healthcare of children with rare diseases.http://www.sciencedirect.com/science/article/pii/S295000872400022XRare diseasePandemic preparednessCOVID-19Neuromuscular disordersBronfenbrenner’s socio-ecological systems model |
| spellingShingle | Jessica Keeley Aysha Stroobach Meg Huston Andrew Wilson Jenny Lam Adelaide Withers Cornelia van Veldhuisen Gareth Baynam Jenny Downs Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiences Rare Rare disease Pandemic preparedness COVID-19 Neuromuscular disorders Bronfenbrenner’s socio-ecological systems model |
| title | Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiences |
| title_full | Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiences |
| title_fullStr | Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiences |
| title_full_unstemmed | Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiences |
| title_short | Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiences |
| title_sort | pandemic preparedness needs for children with rare diseases and their families a perspective of covid 19 experiences |
| topic | Rare disease Pandemic preparedness COVID-19 Neuromuscular disorders Bronfenbrenner’s socio-ecological systems model |
| url | http://www.sciencedirect.com/science/article/pii/S295000872400022X |
| work_keys_str_mv | AT jessicakeeley pandemicpreparednessneedsforchildrenwithrarediseasesandtheirfamiliesaperspectiveofcovid19experiences AT ayshastroobach pandemicpreparednessneedsforchildrenwithrarediseasesandtheirfamiliesaperspectiveofcovid19experiences AT meghuston pandemicpreparednessneedsforchildrenwithrarediseasesandtheirfamiliesaperspectiveofcovid19experiences AT andrewwilson pandemicpreparednessneedsforchildrenwithrarediseasesandtheirfamiliesaperspectiveofcovid19experiences AT jennylam pandemicpreparednessneedsforchildrenwithrarediseasesandtheirfamiliesaperspectiveofcovid19experiences AT adelaidewithers pandemicpreparednessneedsforchildrenwithrarediseasesandtheirfamiliesaperspectiveofcovid19experiences AT corneliavanveldhuisen pandemicpreparednessneedsforchildrenwithrarediseasesandtheirfamiliesaperspectiveofcovid19experiences AT garethbaynam pandemicpreparednessneedsforchildrenwithrarediseasesandtheirfamiliesaperspectiveofcovid19experiences AT jennydowns pandemicpreparednessneedsforchildrenwithrarediseasesandtheirfamiliesaperspectiveofcovid19experiences |