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| ID | Type | Description | Link |
|---|---|---|---|
| P50MD017349 | U.S. NIH Grant/Contract | View source |
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| Name | Class |
|---|---|
| National Institute on Minority Health and Health Disparities (NIMHD) | NIH |
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The objective of the study is to pilot a parent-to-parent coaching model with experienced family members of children with Invasive Mechanical Ventilation (IMV) as parent coaches.
The objective of the study is to pilot a parent-to-parent coaching model with experienced family members of children with IMV as parent coaches. Parent coaches will advise parents of children with IMV awaiting hospital discharge on strategies for advocating for home nursing. Parents and parent coaches will meet as needed and engagement will be tailored to parent preference: text messaging, video or phone conferencing, or in-person visiting in the family home or hospital. Points of contact, issues addressed, and time required will be collected as needs assessment data to appropriately size and scale a future intervention. Enrollment and exit assessments will include completion of the Family Empowerment Scale (FES) and a brief structured interview about parents' perceived impact and acceptability, which will provide pilot data to inform a future intervention. The investigator hypothesizes that parents will gain self-advocacy skills specific to recruiting home health nurses and improve the size of their home nursing workforce through this coaching model.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Parent Coaching | Experimental | Participants will be involved for about 6 months or until they feel that they no longer need the parent-to-parent support. Parents will participate in the following contact attempts:
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Parent-to-parent coaching | Behavioral | Parents and parent coaches will meet as needed via the family's preferred method. Engagement may include text messaging, phone conferencing, Zoom conferencing, or occasional in-home or hospital visiting as preferred. Coaching sessions will vary based on family desired frequency and location, but may include: on-site in the family home or hospital room, telephone or video conferencing, or asynchronous contacts via email or text messaging. The template for the intervention includes an initial introductory session which is intended to build rapport and orient the parent to our program. Subsequent session topics may include: addressing specific needs including topics of interviewing and selecting home health agencies, expectation setting for home based nursing care, recruiting for home health team from inpatient settings, and recruiting for home health team from professional and personal networks. |
| Measure | Description | Time Frame |
|---|---|---|
| Change in parent empowerment as measured by the family empowerment scale (FES) | Parents will complete the Family Empowerment Scale (FES), a 34-item scale designed to assess empowerment in parents whose children have emotional disabilities. | Baseline and repeated at exit (either at 6 months or when parents choose to exit the study) |
| Measure | Description | Time Frame |
|---|---|---|
| Change in nursing coverage | Parents will complete REDCap survey indicating their home nursing coverage. | Baseline and repeated at exit (either at 6 months or when parents choose to exit the study) |
| Satisfaction with coaching program |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Sarah Sobotka, MD, MSCP | University of Chicago | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Chicago | Chicago | Illinois | 60637 | United States |
No Individual Participant Data(IPD) will be shared.
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| Type | Date | Date Unknown |
|---|---|---|
| Release | May 8, 2026 | |
| Reset | Jun 4, 2026 | |
| Release | Jun 11, 2026 | |
| Reset | Jul 8, 2026 |
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| Release Date | Unrelease Date | Unrelease Date Unknown | Reset Date | MCP Release Number |
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| May 8, 2026 | Jun 4, 2026 | |||
| Jun 11, 2026 |
| ID | Term |
|---|---|
| D000079102 | Empowerment |
| ID | Term |
|---|---|
| D012919 | Social Behavior |
| D001519 | Behavior |
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Parents will complete a structured interview about their satisfaction with the program.
| exit (either at 6 months or when parents choose to exit the study) |
| Jul 8, 2026 |