Children with Chronic Illnesses Affecting Physical Health
Conditions
Keywords
Chronic disease, Children
Brief summary
On an individual level, the first expected benefit for the child using the Kid'EM app would be an improvement in the quality of his or her rehabilitation goals, which would be more Specific, Measurable, Activity-related, Realistic and Time-defined (SMART). A second expected benefit for the child, thanks to the work carried out in rehabilitation sessions on objectives adapted to his or her needs and day-to-day life, encouraging commitment and motivation, would be to improve the effectiveness of the care offered to him or her, thereby enhancing autonomy and physical health. For parents, taking part in goal-setting, by contributing their knowledge of their child and his or her daily life, would increase their involvement in their child's care and improve their satisfaction with the care offered. By setting SMART functional goals and facilitating communication between therapist, child and family, we expect to see a more child- and family-centred approach to care. On a collective level, the Kid'EM app proposal would, as recommended by the WHO, improve professional rehabilitation practices and facilitate convergence towards good clinical practices for professionals (physiotherapists, occupational therapists, PRMs, etc.), thereby increasing the efficiency of the child rehabilitation care system. If its value is demonstrated, the Kid'EM app could be adapted for children with other chronic illnesses requiring non-motor rehabilitation follow-up. The digitization of this goal-setting tool means that this low-cost practice could be widely disseminated.
Interventions
OTHERKid'EM app experimental group
In the Kid'EM app experimental group arm, only the application used differs. Visits are organized in the same way as in the controle app arm. Visit 0 (Inclusion) + Visit 1 (V1) : Physical visit Children are included in the study by the investigator, formalized by signing a consent form. Parents fill in questionnaires Visit 2 (when 1st objective is set): Telephone interview to assess performance and satisfaction levels after the first goal has been set. Visit 3 (when setting the 2nd goal): Telephone interview to assess performance and satisfaction levels after the second goal has been set. Visit 4 (week 14 - end of study): Physical visit The questionnaires are again completed by the parents, either directly on a tablet or on paper for later input. Visit 4 bis: Telephone interview to assess performance and satisfaction levels after the work on the first two objectives. Visit 5 (focus group, optional post-study visit)
OTHERKid'EM app control group
Use of control application without guidance for goal setting Visit 0 (Inclusion) + Visit 1 (V1) : Physical visit Children are included in the study by the investigator, formalized by signing a consent form. Parents fill in questionnaires Visit 2 (when 1st objective is set): Telephone interview to assess performance and satisfaction levels after the first goal has been set. Visit 3 (when setting the 2nd goal): Telephone interview to assess performance and satisfaction levels after the second goal has been set. Visit 4 (week 14 - end of study): Physical visit The questionnaires are again completed by the parents, either directly on a tablet or on paper for later input. Visit 4 bis: Telephone interview to assess performance and satisfaction levels after the work on the first two objectives. Visit 5 (focus group, optional post-study visit)
Sponsors
University Hospital, Brest
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Masking description
The process of setting rehabilitation goals with Kid'EM app requires collaboration between the professional, the child and the family, preventing rehabilitation professionals and children and their families from being blindsided.
Intervention model description
Kid'EM app experimental group Rehabilitation professionals have access to the Kid'EM app tool, which guides them in setting goals. The app offers functionalities, including the selection of avatars by children, the identification of children's tastes and needs, the definition of SMART objectives, and the setting up of exchange spaces with parents and other professionals. The application enables the identification of environmental elements that may impact on the child's progress, and provides a note-taking space for the professional. Kidem app control group Rehabilitation professionals have access to a control application which has the same design, but does not offer guidance or a space for exchange with parents. The functionalities of the control application include the creation of the professional's account, selecting the child's pathology, identifying the child's tastes, and entering objectives without guidance. Professionals use their usual strategy to set goals.
Eligibility
Sex/Gender
ALL
Age
1 Years to 18 Years
Healthy volunteers
No
Inclusion criteria
* Children with chronic illnesses affecting their physical health (e.g. Cerebral Palsy, Neuromuscular Disease, Brachial Plexus Paralysis, etc.). * Children receiving rehabilitation care to promote autonomy and physical health. * Child with at least one rehabilitation session/week with the same professional for a period of 3 months * Children aged 5 to 17 wishing to participate in the study * Parental consent for study participation and signature of consent form
Exclusion criteria
* Children without chronic illnesses that do not affect their physical health * Children unable to express their views and priorities * Children unable to collaborate with the rehabilitation professional when using the Kid'EM app * Children already familiar with the Kid'EM app product * Children whose parents are minors or unable to give informed consent
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Quality of the first two objectives set for each child during the 12-week 'Kid'EM app' or 'app control' period | Up to 3 weeks | Quality, adequate or not (binary criterion, measured with the SMART goal evaluation method: SMART GEM), of the first two goals set for each child during the 12-week period of use of the Kid'EM app or control app. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Evaluation of the improvement in the child's family's satisfaction with rehabilitation care | Baseline | Assessment of changes in satisfaction with the care offered to the child and his/her family using the CSQ8 scale completed by parents at V1. |
| Evaluation of the improvement in the effectiveness of care offered to children with chronic illnesses impacting physical health | Baseline | \- Evaluation of the evolution of the PEDI-CAT scale |
| Assessing how to improve the quality of care by promoting child- and family-centered care; | Baseline | \- Evaluation of the evolution of the MPOC (Measure of Processes Of Care) questionnaire completed by parents at V1. |
| Evaluate the evolution of the child's satisfaction with rehabilitation care | Baseline | \- Evaluation of changes in satisfaction with the care offered to the child using an EVA scale completed by the children at V1. |
| Evaluation of the acceptability, usability and quality of the Kid'EM app | Week 14 | \- Usability of the Kid'EM app application with the System Usability Scale (SUS) questionnaire by parents at V4 in the Kid'EM app group. |
| Evaluation of quality improvement in goal setting | From week 14 to week 16 | \- Evaluation of the average SMART GEM score for the first two objectives established for each child during the 12-week period of use of the Kid'EM app or control app. |
| Evaluation of parents' empowerment during child rehabilitation follow-up | Baseline | \- Assessment of changes in the Psychological Empowerment Scale (PES) completed by parents at V1 |
Countries
France
Contacts
Primary ContactChristelle PONS
Outcome results
None listed