Challenges when going on excursions with children with medical complexity in Japan.
caregivers
comprehensive health care
disabled children
pediatrics
travel
Journal
Pediatrics international : official journal of the Japan Pediatric Society
ISSN: 1442-200X
Titre abrégé: Pediatr Int
Pays: Australia
ID NLM: 100886002
Informations de publication
Date de publication:
Jan 2023
Jan 2023
Historique:
revised:
25
09
2022
received:
27
01
2022
accepted:
04
10
2022
pubmed:
2
11
2022
medline:
20
1
2023
entrez:
1
11
2022
Statut:
ppublish
Résumé
With advances in medical technology, the number of children with medical complexity (CMC) has increased. Excursions with such children encourage their social participation and have been shown to have a positive impact on their caregivers. However, the first-hand experience of the excursions has not yet been evaluated regarding the difficulties faced by CMC and their caregivers during preparation, transportation, and in the local area. Semi-structured interviews were conducted with eight informal and eight formal caregivers of CMC who attended an excursion to Tokyo Disney Land (TDL) via video conference. We investigated challenges that they had experienced through the excursion, performing inductive thematic analysis. Three themes were identified: the preparation stage (Theme 1), problems encountered while traveling to the theme park (Theme 2), and problems at the theme park (Theme 3). In the preparation stage, three subthemes, i.e. preparation for the trip, cooperation with related parties, and researching about the theme park and asking for help, are reported. Theme 2 includes four subthemes: activities of daily living, respiratory care, luggage, and weather changes. Theme 3 has three subthemes: activities of daily living, physical condition management, and issues for the theme parks. We found that securing the power supply, location, and time for daily procedures are challenges in realizing excursions for CMC, but with sufficient preparation, it is possible in Japan without major difficulty.
Sections du résumé
BACKGROUND
BACKGROUND
With advances in medical technology, the number of children with medical complexity (CMC) has increased. Excursions with such children encourage their social participation and have been shown to have a positive impact on their caregivers. However, the first-hand experience of the excursions has not yet been evaluated regarding the difficulties faced by CMC and their caregivers during preparation, transportation, and in the local area.
METHODS
METHODS
Semi-structured interviews were conducted with eight informal and eight formal caregivers of CMC who attended an excursion to Tokyo Disney Land (TDL) via video conference. We investigated challenges that they had experienced through the excursion, performing inductive thematic analysis.
RESULTS
RESULTS
Three themes were identified: the preparation stage (Theme 1), problems encountered while traveling to the theme park (Theme 2), and problems at the theme park (Theme 3). In the preparation stage, three subthemes, i.e. preparation for the trip, cooperation with related parties, and researching about the theme park and asking for help, are reported. Theme 2 includes four subthemes: activities of daily living, respiratory care, luggage, and weather changes. Theme 3 has three subthemes: activities of daily living, physical condition management, and issues for the theme parks.
CONCLUSIONS
CONCLUSIONS
We found that securing the power supply, location, and time for daily procedures are challenges in realizing excursions for CMC, but with sufficient preparation, it is possible in Japan without major difficulty.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
e15403Informations de copyright
© 2022 Japan Pediatric Society.
Références
Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SKM, Simon TD, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127:529-38.
Ministry of Health, Labour and Welfare. Trends in policies for supporting children with medical complexity. [cited 2022 Aug 30]. Available from: https://www.mhlw.go.jp/content/10800000/000584473.pdf?fbclid=IwAR1r_G_tWFodDrMQ9QwNjaegtTtpt1dnVeAYQEKtn0OIRKwvbC_Nw73Adcg
World Health Organization. The ICF: an overview; 2001. [cited 2021 Nov 12]. Available from: https://www.cdc.gov/nchs/data/icd/icfoverview_finalforwho10sept.pdf
Gilgoff IS, Helgren J. Planning an outing from hospital for ventilator-dependent children. Dev Med Child Neurol. 1992;34:904-10.
Yantzi NM, Rosenberg MW, McKeever P. Getting out of the house: the challenges mothers face when their children have long-term care needs. Health Soc Care Community. 2007;15:45-55.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77-101.
Kondrad M. Completing the circle: providing comprehensive care to children with special healthcare needs. Nurs Adm Q. 2009;33:70-2.
Bagwell HB, Liggin R, Thompson T, Lyle K, Anthony A, Baltz M, et al. Disaster preparedness in families with children with special health care needs. Clin Pediatr (Phila). 2016;55:1036-43.
Heaton J, Noyes J, Sloper P, Shah R. Families' experiences of caring for technology-dependent children: a temporal perspective. Health Soc Care Community. 2005;13:441-50.
Nicholl H. 'Going between worlds': travelling with children with complex needs. J Child Health Care. 2015;19:293-303.
Kohl SE, Barnett ED. What do we know about travel for children with special health care needs? A review of the literature. Travel Med Infect Dis. 2020;34:101438.
Law to support children in medical care passed, which will take effect in autumn. Date: June 11, 2021. https://www3.nhk.or.jp/news/html/20210611/k10013079801000.html