Patient Navigation
Conditions
Keywords
Child Health, Chronic health diseases, Patient Navigation, Migrant population, Refugee, Immigrant, Asylum seeker, Culturally competent care, Health services research
Brief summary
The goal of this randomized controlled trial is to test if a patient navigator program improves healthcare experiences and outcomes for migrant families caring for a child or youth with special healthcare needs (i.e. chronic health condition). The main questions are, for migrant families with a child or youth with special healthcare needs: Does a patient navigator reduces barriers to care? Does a patient navigator improve care coordination, caregiver empowerment, caregiver stress and quality of life? What are the healthcare experiences for families with and without the patient navigator intervention? Participants will: * Receive the intervention, i.e., the patient navigator program, or continue with standard of care for 12 months * Fill out questionnaires at 3 time points on barriers to care, caregiver stress, care coordination, and their child's health
Interventions
BEHAVIORALPatient Navigator
The patient navigator will meet the following requirements: a bachelor's degree in health or social sciences, or equivalent experiences; strong knowledge of the local health and social services system; trauma-informed care and cultural safety; strong interpersonal skills, ability to problem-solve, and autonomy; have prior experiences with migrant communities (including lived experiences) and working in healthcare setting. The navigator will be trained on topics related to their role, through case discussions, and role playing, as done in other navigator trials. Topics will include Indigenous cultural safety as applied to migrant health, systems navigation, care coordination, family-centred care, social determinants of health (health insurance, income supplements, etc.) and inequities, advanced communication and helping skills (e.g., motivational interviewing), ethics, privacy, and confidentiality, and others as determined through our co-design process.
Sponsors
Unity Health Toronto
Canadian Institutes of Health Research (CIHR)
The Hospital for Sick Children
McGill University Health Centre/Research Institute of the McGill University Health Centre
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
SINGLE (Outcomes Assessor)
Intervention model description
Multi-centre, pragmatic, assessor-blinded, parallel randomized controlled trial with an embedded qualitative study. In the control arm, participants will receive a standard information package and care usually provided within their clinics. In the intervention arm, participants will receive support from a trained patient navigator. The patient navigator will contact participants: 1) Within 7 days of randomization; 2) At least once every 3 months up to 12 months; 3) As needed to follow-up on tasks identified in previous visits; and 4) As initiated by the participant. The navigator will tailor the topics addressed during these interactions according to the needs of the participant and compile a care plan with input from the patient, family, and clinicians.
Eligibility
Sex/Gender
ALL
Age
No minimum to 18 Years
Healthy volunteers
No
Inclusion criteria
* Primary caregiver of child/youth ≤18 years 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)). * Children or youth with special health care needs, 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. * Experiencing care transitions between at least 2 of the following: primary care, community-based care, secondary specialist care, and/or hospital-based (acute) care.
Exclusion criteria
* Caregiver living in Canada ≥10 years * Families who are receiving available peer navigation support at sites will be excluded to limit cross-over of interventions.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Barriers to Care (BCQ) | Assessment will happen at baseline, 6 months after the start of the intervention and at the end of the intervention, i.e., 12 months. | The BCQ has been validated for children and youth with special healthcare needs. It contains 39 items grouped in 5 sub-scales, which include: 1) Pragmatics: issues related to logistics and costs that may prevent or delay appropriate utilization; 2) Skills: strategies to navigate or function competently in health system care; 3) Expectations: caregiver expectations of receiving poor quality care, including a lack of communication between doctors, health care system; 4) Marginalization: the internationalization and personalization of negative experiences within the health care system; 5) Knowledge and beliefs: personal ideas about nature and treatment of illness (including culture), which may differ from the healthcare provider. Caregivers rate the items on a 5-point Likert scale, converted to a score ranging from 0 to 100 (higher scores = fewer barriers). |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Parental empowerment scale | Assessment will happen at baseline, 6 months after the start of the intervention and at the end of the intervention, i.e., 12 months. | A validated scale in families with children or youth with special healthcare needs. We will use the 12-item Service System subscale, which measures empowerment using a 5-point Likert scale converted to a score ranging from 1- 70 (higher scores = increased services) as it pertains to the caregiver actively working to get the services required for their child. |
| Healthcare utilization | Assessment will happen at baseline, 6 months after the start of the intervention and at the end of the intervention, i.e., 12 months. | ER visits, hospital admissions, and no-show visits, through chart review and patient reports. |
| PROMIS - Pediatric Global Health 7 | Assessment will happen at baseline, 6 months after the start of the intervention and at the end of the intervention, i.e., 12 months. | Parent-reported assessment of their child's perceived health, quality of life and physical/mental health using a 5-point likert scale. Converted to a score ranging from 1 to 20 (higher scores = better perceived health). |
| Short-form survey 12 | Assessment will happen at baseline, 6 months after the start of the intervention and at the end of the intervention, i.e., 12 months. | For caregivers; This is a self-reported outcome measure that measures quality of life. This one question is scored from 1 poor health - 4 excellent health. |
| Effective care coordination | Assessment will happen at baseline, 6 months after the start of the intervention and at the end of the intervention, i.e., 12 months. | Based on 6 questions from the National Survey on children with special health care needs, as care coordination that is adequate (receiving help and satisfied), inadequate (not receiving and less than very satisfied), or no need for care coordination. The primary goals of this survey is to assess the impact of special health care needs and to evaluate change over time. |
| Distress Thermometer | Assessment will happen at baseline, 6 months after the start of the intervention and at the end of the intervention, i.e., 12 months. | The distress thermometer asks participants their level of distress in the past month on a scale of 0-10, 10 indicating extreme distress. |
| Perceived stress scale | Assessment will happen at baseline, 6 months after the start of the intervention and at the end of the intervention, i.e., 12 months. | 10-item scale designed to help measure individual stress levels in various situations. PSS can range from 0 to 40 with higher scores indicating higher perceived stress. |
| Patient Satisfaction with Interpersonal Relationships with Navigators (PSN-I) | Assessment will happen at 6 months and at the end of the intervention, i.e., 12 months, only for the intervention group. | A valid and reliable measure of satisfaction with patient navigators that contains 9-item answered with a 5-point Likert scale. Score ranging from 1- 45, higher score reflects higher satisfaction with patient navigator. |
| Patient Health Questionnaire (PHQ-2) | Assessment will happen at baseline, 6 months after the start of the intervention and at the end of the intervention, i.e., 12 months. | For caregivers; The PHQ-2 inquires about the frequency of depressed mood and anhedonia over the past two weeks. This questionnaire is used to screen for depression in a first-step approach. The PHQ-2 score ranges from 0-6 with a score higher than 3 indicating a likelihood of depression. |
Countries
Canada
Contacts
Primary ContactMelissa Tachdjian
Backup ContactPatricia Li, MD MSc FRCPC
Outcome results
None listed