Parents InformaTion in Child REHABilitation

NCT05547958 | Completed DMC

• 1 other identifier: IS-C4-2022-009
• Study Type: observational
• Target: 300
• Locations: 1 country
• Sites: 1

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.

Conditions

Children with Chronic Condition

Keywords

m-health; mobile apps; chronic disease; informations; parents; pediatric; rehabilitation; communication

Outcome Measures

Primary Outcomes (1)

• key elements desired by parents in the apps aiming to share informations with rehabilitation professionals

  The aim is to identify the key priority elements for parents in the design of mobile apps for information exchange with rehabilitation professionals.

  june 2022 - june 2023

Interventions

Focus group and online survey OTHER

Focus group with parents of children with disabilities or chronic condition will be organized to identify hypotheses regarding their needs in terms of informations exchange with pediatric rehabilitation professionals about the rehabilitation care of their children. Then, an online survey will be proposed to parents of children with disabilities or chronic condition in France to identify their needs regarding the development of apps that offer the feature to share informations with rehabilitation professionals.

Eligibility Criteria

• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• 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.

You may qualify if:

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

You may not qualify if:

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

Sponsors & Collaborators

• Fondation Ildys: lead
• University Hospital, Brest: collaborator

Study Sites (1)

Fondation Ildys

Brest, 29200, France

Location

Related Publications (4)

• 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.

  PMID: 30171827 BACKGROUND

• Maguire M. Methods to support human-centred design. International Journal of Human-Computer Studies. 1 oct 2001;55(4):587-634.

  BACKGROUND

• 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.

  PMID: 20851841 BACKGROUND

• 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.

  PMID: 23235644 BACKGROUND

MeSH Terms

Conditions

Chronic Disease; Communication

Interventions

Focus Groups

Condition Hierarchy (Ancestors)

Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms; Behavior

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Design

• Study Type: observational
• Observational Model: FAMILY BASED
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: September 16, 2022
• First Posted: September 21, 2022
• Study Start: June 24, 2022
• Primary Completion: March 31, 2023
• Study Completion: December 31, 2023
• Last Updated: March 12, 2025

Record last verified: 2025-03

Locations

FR (1)