Children With Medical Complexity, Empowerment, Home Nursing, Invasive Mechanical Ventilation
Conditions
Brief summary
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.
Detailed description
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.
Interventions
BEHAVIORALParent-to-parent coaching
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.
Sponsors
University of Chicago
National Institute on Minority Health and Health Disparities (NIMHD)
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
OTHER
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* Parents of children with a tracheostomy and ventilator awaiting hospital discharge in Illinois. * Parents must live or have their child hospitalized within approximately a 1 hour radius of the University of Chicago. * The child must be enrolled in, or in the process of enrolling in the Division of Specialized Care for Children (DSCC) Home Care Program. * The parent/legal guardian must have legal custody of the child and plan on living with the child in the home.
Exclusion criteria
* Wards of the state
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change in Parent Empowerment as Measured by the Family Empowerment Scale (FES) | Baseline and repeated at exit (length of program involvement was median (range) 6 (2-8) months) | Parents completed the Family Empowerment Scale (FES), a 34-item Likert-scale questionnaire with three domains: family, service system, and community. Scores on the FES range from 1 (not true at all) to 5 (very true), with higher scores indicating greater self-perceived advocacy skills, confidence in navigating systems and community resources, and ability to engage in decision making for their child. The FES has been tested for reliability (0.87-0.88) and internal consistency for test-test reliability (0.77-0.85). The FES had been used previously to characterize changes in empowerment after an advocacy intervention for parents of children with disabilities. The maximum potential total score being 170 and the minimum being 34. We compared scores between enrollment and exit and report the median(IQR) change in score over the study period. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Number of Participants That Completed Nursing Agency Selection | At study exit (length of program involvement was a median (range) 6 (2-8) months) | Parents will have selected a nursing agency for the home health nursing care of their child. |
| Categorical Rating of Met Nursing Needs | At study exit (length of program involvement was a median (range) 6 (2-8) months) | Participants were asked to rate their perception of met nursing needs (Not staffed, somewhat staffed, mostly staffed, or fully staffed). |
| Days Per Week Where at Least One Home Health Nursing Shift Was Filled | At study exit (length of program involvement was a median (range) 6 (2-8) months) | At exit from the study participants were asked how many days per week they have a filled nursing shift. We counted each day with at least one nursing shift filled as a day with home health nursing. |
| Satisfaction With Coaching Program | At study exit (length of program involvement was median (range) 6 (2-8) months) | Parents will complete a structured interview about their experience with the parent to parent coaching program and likelihood of recommending it to a family in a similar circumstance. |
Countries
United States
Contacts
PRINCIPAL_INVESTIGATORSarah Sobotka, MD, MSCP
University of Chicago
Participant flow
Recruitment details
Participants were recruited for this pilot intervention through the Division of Specialized Care for Children (DSCC), the state of Illinois Title V agency which provides care coordination for children with medical complexity. DSCC staff introduced the coaching program to parents of children with IMV highlighted as hard-to-staff cases awaiting hospital discharge or those living at home with incomplete home nursing. The study team contacted interested parents for consent and enrollment.
Pre-assignment details
Parent caregivers were enrolled, and all participants were assigned to receive the parent coaching. Parent coaches were paid members of the study team and were not participants in the study.
Baseline characteristics
| Characteristic | — |
|---|---|
| Ethnicity (NIH/OMB) Hispanic or Latino | 4 Participants |
| Ethnicity (NIH/OMB) Not Hispanic or Latino | 6 Participants |
| Ethnicity (NIH/OMB) Unknown or Not Reported | 0 Participants |
| Family Empowerment Scale Score | 142 Family Empowerment Scale Score |
| Race (NIH/OMB) American Indian or Alaska Native | 0 Participants |
| Race (NIH/OMB) Asian | 0 Participants |
| Race (NIH/OMB) Black or African American | 6 Participants |
| Race (NIH/OMB) More than one race | 0 Participants |
| Race (NIH/OMB) Native Hawaiian or Other Pacific Islander | 0 Participants |
| Race (NIH/OMB) Unknown or Not Reported | 0 Participants |
| Race (NIH/OMB) White | 4 Participants |
| Sex: Female, Male Female | 10 Participants |
| Sex: Female, Male Male | 0 Participants |
Adverse events
| Event type | EG000 affected / at risk |
|---|---|
| deaths Total, all-cause mortality | 0 / 10 |
| other Total, other adverse events | 0 / 10 |
| serious Total, serious adverse events | 0 / 10 |
Outcome results
None listed