Clinical trial NCT05547958: Parents InformaTion in Child REHABilitation
Official title: Parents InformaTion in Child REHABilitation
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Children with Chronic Condition
Keywords: m-health
mobile apps
chronic disease
informations
parents
pediatric
rehabilitation
communication
Lead sponsor: Fondation Ildys
Sponsor class: OTHER
Collaborators: name: University Hospital, Brest
First posted: 2022-09-21
Enrollment: 300
Sex: ALL
Standard ages: CHILD
ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: FAMILY_BASED
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Parents of a child (0-18 years) with a chronic condition and with a rehabilitation follow up will be invited by physicians in three pediatric rehabilitation centers to participate to the focus groups.

The survey will be adressed nationally to the parents of children with a chronic condition and with a rehabilitation follow up.

Brief summary: In France, approximaly 3 million children have a chronic disease and require regular care such as paediatric rehabilitation. These cares are provided over long periods of time, most often throughout childhood and often into adulthood. Paediatric rehabilitation care involves multidisciplinary team working closely with families. During follow-up rehabilitation, communication between the children, families and the professionals is essential. To this end, digital health solutions can be helpful.

Digital health solutions are rapidly emerging in the field of paediatric rehabilitation. In this context of emergence of digital health solutions, it is essential to identify the needs and expectations of families of children with a chronic disease.

This project aims to identify the key points in terms of information exchange on rehabilitation monitoring. To identify these needs, a mixed study will be carried out from June 2022 to June 2023 involving focus groups to gather qualitative informations on parent's needs in terms of information exchange through digital apps and quantitative research with a survey that will allow to prioritise these needs.

Detailed description: For the first part of the study, the researchers will conduct focus groups and interview parents about their experiences and perceptions of information exchange with rehabilitation professionals. All the participants will be parents of a child with a chronic disease, aged between 0 and 18 years and receiving paediatric rehabilitation care. The objective of this first part is to collect qualitative information on the needs of parents in terms of information exchange through digital applications.

With the analysis of the focus group, the researchers will define the hypothesis.

Then, a survey will be built and shared online in France during 3 months (2nd semester 2022).

With this survey, the objective is to identify the key points for the development of paediatric rehabilitation apps in terms of information exchange.

Quantitative data will be described with frequency, mean and standard deviation.

Eligibility criteria: Inclusion Criteria:

- parents of a child (0-18 years) with a chronic condition and with a rehabiilitation follow up

Exclusion Criteria:

* parents who do not speak french
* parents with an intellectual disability (for the first part : focus group)

Primary outcomes:
measure: key elements desired by parents in the apps aiming to share informations with rehabilitation professionals
timeFrame: june 2022 - june 2023
Secondary outcomes:
Other outcomes:
Locations:
city: Brest
country: France
facility: Fondation Ildys
Study officials:
References:
citation: Nussbaum R, Kelly C, Quinby E, Mac A, Parmanto B, Dicianno BE. Systematic Review of Mobile Health Applications in Rehabilitation. Arch Phys Med Rehabil. 2019 Jan;100(1):115-127. doi: 10.1016/j.apmr.2018.07.439. Epub 2018 Aug 29.
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citation: O'Cathain A, Murphy E, Nicholl J. Three techniques for integrating data in mixed methods studies. BMJ. 2010 Sep 17;341:c4587. doi: 10.1136/bmj.c4587. No abstract available.
citation: de Jongh T, Gurol-Urganci I, Vodopivec-Jamsek V, Car J, Atun R. Mobile phone messaging for facilitating self-management of long-term illnesses. Cochrane Database Syst Rev. 2012 Dec 12;12(12):CD007459. doi: 10.1002/14651858.CD007459.pub2.