Child-onset DisabilityNCT02753452
Optimizing Life Success Through Residential Immersive Life Skills (RILS) Programs for Youth With Disabilities
A study testing Residential Immersive Life Skills programming and Non-residential life skills programming in people with Child-onset Disability, run by Holland Bloorview Kids Rehabilitation Hospital at 1 site in Canada.
Trial summary
In Canada, between 3.6% and 7.7% of children under 19 years old are thought to have a chronic health condition that results in disability or limits to activity. These young people have difficulty finding jobs, attending school, living independently, and forming relationships with other people. Read more about this study
- Who is it for?
- Ages 14 to 21 years
- Conditions the study is for
- Child-onset Disability
- What is being tested?
- Residential Immersive Life Skills programming and Non-residential life skills programming
- Type of treatment
- Lifestyle or therapy programme
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 29 participants
- Where
- 1 siteCanada
- Study dates
- May 2015to 31 Mar 2021
- Phase
- Interventional
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 14 to 21 years
- All sexes
- No healthy volunteers
- Child, Adult
Who may be able to join
- All youth must be between 14 and 21 years of age, have a child-onset disability, be able to set goals for themselves, and speak English.
- Parents who are enrolled must speak English.
Who cannot join
- Youth with severe behavioral issues will be excluded, since these would restrict the youth's ability to participate in a group learning experience.
Trial locations and contacts
1 site in 1 country.
Canada1 site
Holland Bloorview Kids Rehabilitation Hospital
Toronto, Ontario, M4G 1R8
About this study
Official title: Optimizing Life Success Through Residential Immersive Life Skills Programs for Youth With Disabilities
In Canada, between 3.6% and 7.7% of children under 19 years old are thought to have a chronic health condition that results in disability or limits to activity. These young people have difficulty finding jobs, attending school, living independently, and forming relationships with other people. These poorer life outcomes are partly the result of a lack of life skills. Life skills include the ability to solve problems and set goals, which allows youth to deal with the demands of everyday life. Several children's treatment centres in Ontario offer short-term residential immersive life skills (RILS) programs to provide youth with these life skills to help them take on adult roles. RILS programs are very promising in terms of making a long-term difference in youths' lives because they provide a place where youth can learn by doing, working with peers and taking risks in a safe environment. However, we do not yet know how well skills that are learned in RILS programs are kept up as time passes or how well RILS programs support broader skills, such as the ability to make one's own choices.
The proposed research will examine these issues and will ask the following questions:
Read more
- What opportunities are youth given when they participate in RILS programs? What specific strategies do RILS service providers use to support youth in learning life skills?;
- How do youth experience and perceive their participation in a RILS program, before, during and after they take part? What do their parents expect and experience in terms of their child's participation?; and
- What changes do youth experience, particularly in terms of their ability to make choices for themselves and their sense of being able to cope with things that come up in their lives? The study will involve youth from several treatment centres in Ontario over the next three years.
Youth who are attending RILS programs will be compared with:
- youth who are similar to the RILS youth, but who are taking part in a life skills program that is not residential;
- youth who applied to a RILS program and were accepted, but who will take part in the program in a different year; and
- a group of youth who are similar to the RILS youth but who are not taking part in any life skills program.
Youth will provide data at four time points: before the program starts, immediately after the program finishes, three months after the program is over and 12 months after the program is over.
- Conditions
- Child-onset Disability
- Being tested
- Residential Immersive Life Skills programming, Non-residential life skills programming
- Keywords
- youth, disability, transition, life skills, adolescence
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Residential Immersive Life Skills programmingBehavioural
Non-residential life skills programmingBehavioural
| Study group | Role | What they receive |
|---|---|---|
| Residential Immersive Life Skills group | Active comparator | Youth will take part in a residential life skills program of between one and three weeks, consisting of formal workshops, peer learning, outings in the community, one-on-one coaching and daily living tasks carried out with peers (e.g. cooking, laundry, grocery shopping). Receives: Behavioral: Residential Immersive Life Skills programming |
| Non-residential life skills program | Active comparator | Youth will take part in programs focusing on increasing specific life skills, but taking place only during the day (i.e. non- residential). Receives: Behavioral: Non-residential life skills programming |
| Deferred RILS applicants | No intervention | Youth who applied to a Residential Immersive Life Skills program but are deferred to a subsequent year. These youth are included as a comparator group to match the motivation level required to apply to a RILS program. |
| No life skills program | No intervention | Youth who did not apply or take part in any group life skills program. These youth provide a diagnosis and age matched comparator group. |
What is being measured
The primary outcome is the main question the study is designed to answer.
Change in Arc's Self-Determination Scale scores
Measured: Baseline, 1 week post intervention, 3 months post intervention, 12 months post intervention
Secondary outcomes (1)
Change in General Self-Efficacy Scale scores
Measured: Baseline, 1 week post intervention, 3 months post intervention, 12 months post intervention
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted27 Apr 2016 (estimated)
- Study startMay 2015
- Primary completion31 Mar 2021
- Study completion31 Mar 2021
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (1)Papers the sponsor has linked to this study.
- Other trials for Child-onset DisabilityStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Other
- Allocation
- Non-randomised
- Intervention model
- Parallel groups
- Masking
- None (open label)
- Enrolment
- 29 participants (actual)
Sponsor and investigators
- Lead sponsor
- Holland Bloorview Kids Rehabilitation Hospital
- Sponsor type
- University, hospital or other
- Collaborators
- ErinoakKids Centre for Treatment and Development, McMaster Children's Hospital
- Responsible party
- Sponsor
- Investigators
- Gillian King, PhD, Principal investigator, Holland Bloorview Kids Rehabilitation HospitalAmy C McPherson, PhD, Principal investigator, Holland Bloorview Kids Rehabilitation Hospital
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02753452
- Sponsor's protocol ID
- SSHRC-435-2014-0654
- Other IDs
- 14-506
- Status last verified
- Mar 2022
- First submitted
- 8 Apr 2016
- Last updated
- 11 Mar 2022
- Results posted
- No
- Data monitoring committee
- No
- Individual data sharing
- No
Publications
McPherson AC, King G, Rudzik A, Kingsnorth S, Gorter JW; Ontario Independence Program Research (OIPR) team. Optimizing life success through residential immersive life skills programs for youth with disabilities: study protocol of a mixed-methods, prospective, comparative cohort study. BMC Pediatr. 2016 Sep 6;16(1):153. doi: 10.1186/s12887-016-0694-7.
PubMed 27600167
Study at a glance
From the registry record, last updated by the sponsor on 11 Mar 2022. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Optimizing Life Success Through Residential Immersive Life Skills Programs for Youth With Disabilities
- ClinicalTrials.gov ID
- NCT02753452
- Acronym / sponsor ID
- SSHRC-435-2014-0654
- Conditions
- Child-onset Disability
- Keywords
- youth, disability, transition, life skills, adolescence
- Study type
- Interventional
- Recruitment status
- Completed
- Enrolment
- 29 participants (actual)
- Lead sponsor
- Holland Bloorview Kids Rehabilitation HospitalUniversity, hospital or other
- Collaborators
- ErinoakKids Centre for Treatment and Development, McMaster Children's Hospital
- Study start
- May 2015 (actual)
- Primary completion
- 31 Mar 2021 (actual)
- Study completion
- 31 Mar 2021 (actual)
- First posted
- 27 Apr 2016 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
In Canada, between 3.6% and 7.7% of children under 19 years old are thought to have a chronic health condition that results in disability or limits to activity. These young people have difficulty finding jobs, attending school, living independently, and forming relationships with other people. These poorer life outcomes are partly the result of a lack of life skills. Life skills include the ability to solve problems and set goals, which allows youth to deal with the demands of everyday life. Several children's treatment centres in Ontario offer short-term residential immersive life skills (RILS) programs to provide youth with these life skills to help them take on adult roles. RILS programs are very promising in terms of making a long-term difference in youths' lives because they provide a place where youth can learn by doing, working with peers and taking risks in a safe environment. However, we do not yet know how well skills that are learned in RILS programs are kept up as time passes or how well RILS programs support broader skills, such as the ability to make one's own choices.
The proposed research will examine these issues and will ask the following questions:
- What opportunities are youth given when they participate in RILS programs? What specific strategies do RILS service providers use to support youth in learning life skills?;
- How do youth experience and perceive their participation in a RILS program, before, during and after they take part? What do their parents expect and experience in terms of their child's participation?; and
- What changes do youth experience, particularly in terms of their ability to make choices for themselves and their sense of being able to cope with things that come up in their lives? The study will involve youth from several treatment centres in Ontario over the next three years.
Youth who are attending RILS programs will be compared with:
- youth who are similar to the RILS youth, but who are taking part in a life skills program that is not residential;
- youth who applied to a RILS program and were accepted, but who will take part in the program in a different year; and
- a group of youth who are similar to the RILS youth but who are not taking part in any life skills program.
Youth will provide data at four time points: before the program starts, immediately after the program finishes, three months after the program is over and 12 months after the program is over.
Study design
- Primary purpose
- Other
- Allocation
- Non-randomised
- Intervention model
- Parallel groups
- Masking
- None (open label)
- Number of arms
- 4
| Arm | Type | Receives |
|---|---|---|
| Residential Immersive Life Skills group | Active comparator | Behavioral: Residential Immersive Life Skills programmingYouth will take part in a residential life skills program of between one and three weeks, consisting of formal workshops, peer learning, outings in the community, one-on-one coaching and daily living tasks carried out with peers (e.g. cooking, laundry, grocery shopping). |
| Non-residential life skills program | Active comparator | Behavioral: Non-residential life skills programmingYouth will take part in programs focusing on increasing specific life skills, but taking place only during the day (i.e. non- residential). |
| Deferred RILS applicants | No intervention | –Youth who applied to a Residential Immersive Life Skills program but are deferred to a subsequent year. These youth are included as a comparator group to match the motivation level required to apply to a RILS program. |
| No life skills program | No intervention | –Youth who did not apply or take part in any group life skills program. These youth provide a diagnosis and age matched comparator group. |
Who may qualify
- Ages
- 14 to 21 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult
Key inclusion criteria (2 listed)
- All youth must be between 14 and 21 years of age, have a child-onset disability, be able to set goals for themselves, and speak English.
- Parents who are enrolled must speak English.
Key exclusion criteria (1 listed)
- Youth with severe behavioral issues will be excluded, since these would restrict the youth's ability to participate in a group learning experience.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Residential Immersive Life Skills programming | Behavioural | Residential Immersive Life Skills group |
| Non-residential life skills programming | Behavioural | Non-residential life skills program |
Primary outcome
Change in Arc's Self-Determination Scale scores
Time frame: Baseline, 1 week post intervention, 3 months post intervention, 12 months post intervention
1 secondary outcome
Change in General Self-Efficacy Scale scores
Time frame: Baseline, 1 week post intervention, 3 months post intervention, 12 months post intervention
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 11 Mar 2022.
- Derived from this study: PubMed 27600167McPherson AC, King G, Rudzik A, Kingsnorth S, Gorter JW; Ontario Independence Program Research (OIPR) team. Optimizing life success through residential immersive life skills programs for youth with disabilities: study protocol of a mixed-methods, prospective, comparative cohort study. BMC Pediatr. 2016 Sep 6;16(1):153. doi: 10.1186/s12887-016-0694-7.
- Individual participant dataSharing planned: No
Related trials for Child-onset Disability
Active, not recruitingObservational study
CNKSR2 Natural History Study
Developmental Dysphasia, Epileptic Encephalopathy, Childhood-Onset
RecruitingObservational study
Patterns of Neurodevelopmental Disorders
Neurodevelopmental Disorders, Autism Spectrum Disorder
Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Gillian King, PhD principal investigator
Holland Bloorview Kids Rehabilitation Hospital
Amy C McPherson, PhD principal investigator
Holland Bloorview Kids Rehabilitation Hospital
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing Residential Immersive Life Skills programming and Non-residential life skills programming in people with Child-onset Disability, run by Holland Bloorview Kids Rehabilitation Hospital at 1 site in Canada.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 2 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 11 Mar 2022. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Canada. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Change in Arc's Self-Determination Scale scores (time frame: Baseline, 1 week post intervention, 3 months post intervention, 12 months post intervention). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT02753452, which also lists 1 linked publication.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 11 Mar 2022.