Navigating Together: Empowering refugee and immigrant youth with special health care needs
| ISRCTN | ISRCTN96948327 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN96948327 |
| Sponsor | McGill University Health Centre |
| Funder | TD Bank Group |
- Submission date
- 29/11/2025
- Registration date
- 28/01/2026
- Last edited
- 28/01/2026
- Recruitment status
- Not yet recruiting
- Overall study status
- Ongoing
- Condition category
- Other
Plain English summary of protocol
Background and study aims
Youth with special healthcare needs often face complex challenges when transitioning from pediatric to adult healthcare services, and migrant youth experience additional barriers to care. This study aims to evaluate whether a co-designed patient navigator intervention can support migrant youth and their families during this transition by improving transition readiness, care coordination, family empowerment, and access to culturally safe care, while decreasing health-related family stress.
Who can participate?
Primary caregiver of youth 14-18 years old who is:
1) First- or second-generation migrant (defined as born outside of Canada or having parents born elsewhere, respectively). Migrants include immigrants, resettled refugees, refugee claimants (asylum-seekers), temporary workers or international students, and other individuals without formal immigration status (undocumented).
2) Youth with special healthcare needs aged 14-18 as defined by the CYSHCN Screener©, which identifies children who are experiencing one or more functional limitation or service use due to a physical, emotional, behavioural, developmental, or other health condition that has lasted or is expected to last at least 12 months
3) Followed by at least one pediatric care service expected to continue into adult care
4) Caregiver living in Canada <15 years
What does the study involve?
Participants will receive support from a patient navigator for 12 months, including individualized transition planning, care coordination, and culturally safe guidance. The navigator will contact families regularly (every 2–4 weeks initially, then every 3 months) via in-person visits, phone, video, text, or email. Participants will complete questionnaires at baseline, 6 months, and 12 months on transition readiness, care coordination, quality of life, and satisfaction. A subset of parents may be asked to take part in two interviews (at 6 and 12 months) about their experiences.
What are the possible benefits and risks of participating?
Risks:
Participation may involve answering personal questions about healthcare experiences and feelings of stress, which could cause emotional discomfort. Completing questionnaires and interviews may also be time-consuming. There may be other unforeseen risks. Participants may skip any question or withdraw at any time without providing a reason. If distress occurs, the research team will offer support and refer participants to appropriate resources. There may be other unforeseen risks.
Benefits:
Participants may experience reduced barriers during the transition to adult care and receive personalized support from a patient navigator. While personal benefit cannot be guaranteed, the study aims to improve transition processes for migrant youth with special healthcare needs and their families.
Where is the study run from?
The study will run from Montreal, Quebec, primarily at the Montreal Children’s Hospital.
When is the study starting and how long is it expected to run for?
The study is expected to start on January 15 and will run for approximately 24 months, including recruitment, intervention delivery, and evaluation.
Who is funding the study?
TD Canada Trust Ready Commitment Grant.
Who is the main contact?
Dr. Patricia Li, patricia.li@mcgill.ca
Contact information
Principal investigator, Scientific
Research Institute of the McGill University Health Centre
1001 Decarie Boulevard
Montreal
H4A 3J1
Canada
| 0000-0003-1791-9411 | |
| Phone | +1 514-412-4400 ext 23768 |
| patricia.li@mcgill.ca |
Public
Research Institute of the McGill University Health Centre
1001 Decarie Boulevard
Montreal
H4A 3J1
Canada
| Phone | +1 (438) 543-2662 |
|---|---|
| navigation@muhc.mcgill.ca |
Study information
| Primary study design | Interventional | |
|---|---|---|
| Allocation | N/A: single arm study | |
| Masking | Open (masking not used) | |
| Control | Uncontrolled | |
| Assignment | Single | |
| Purpose | Health services research | |
| Scientific title | Evaluating the implementation and impact of a co-designed patient navigator intervention for migrant youth with special healthcare needs transitioning to adult care | |
| Study acronym | MiNav-Ado | |
| Study objectives | To evaluate the implementation and impact of a co-designed patient navigator intervention for migrant youth with special healthcare needs transitioning from pediatric to adult care, using a mixed-methods design guided by RE-AIM to assess transition readiness, family experiences, and implementation outcomes at individual and setting levels | |
| Ethics approval(s) |
Not yet submitted | |
| Health condition(s) or problem(s) studied | Transition from pediatric to adult healthcare for migrant youth with special and/or chronic healthcare needs (e.g. asthma, diabetes, sickle cell disease, cerebral palsy, and developmental and behavioural disorders) | |
| Intervention | Participants will receive a 12-month transition-focused Patient Navigator (PN) intervention. The PN is a full-time professional with training in trauma-informed care, cultural safety, systems navigation, care coordination, and communication skills. The intervention includes: (1) assessment of transition readiness at multiple time points (baseline, 6 months and 12 months); (2) tailored information and support; (3) co-created individualized transition plans; (4) care coordination; (5) introduction to adult services; and (6) support through transfer completion for youth aging out during the study. The PN will contact participants within 7 days of consent, then every 2–4 weeks for the first 3 months, every 3 months thereafter, and as needed. Contacts will occur in person (prioritized for first visit), or via video, phone, SMS, or email. All interactions will be tailored to participant needs and documented in a care plan. An interpreter will used for participants who require language support during interactions. | |
| Intervention type | Behavioural | |
| Primary outcome measure(s) |
| |
| Key secondary outcome measure(s) |
| |
| Completion date | 15/01/2028 |
Eligibility
| Participant type(s) | |
|---|---|
| Age group | Mixed |
| Lower age limit | 14 Years |
| Upper age limit | 18 Years |
| Sex | All |
| Target sample size at registration | 64 |
| Key inclusion criteria | 1. Primary Caregiver of youth 14 to 18 who is First- or second-generation migrant, defined as born outside of Canada or having parents born elsewhere, respectively. Migrants include immigrants, resettled refugees, refugee claimants (asylum-seekers), temporary workers or international students, and other individuals without formal immigration status (undocumented) 2. Youth with special healthcare needs aged 14-18 as defined by the CYSHCN Screener©, which identifies children who are experiencing one or more functional limitation or service use due to a physical, emotional, behavioural, developmental, or other health condition that has lasted or is expected to last at least 12 months 3. Followed by at least one pediatric care service expected to continue into adult care 4. Caregiver living in Canada <15 years |
| Key exclusion criteria | 1. Caregiver who lived in Canada for over 15 years. |
| Date of first enrolment | 01/03/2026 |
| Date of final enrolment | 15/07/2027 |
Locations
Countries of recruitment
- Canada
Study participating centres
Results and Publications
| Individual participant data (IPD) Intention to share | No |
|---|---|
| IPD sharing plan summary | Not expected to be made available |
| IPD sharing plan |
Editorial Notes
09/12/2025: Study’s existence confirmed by the TD Bank Group, Canada.