Trial Outcomes & Findings for Parent-to-parent Coaching While Awaiting Hospital Discharge With a Child With a Ventilator (NCT NCT05880953)

Last Updated: 2026-07-21

Results Overview

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.

Recruitment status

COMPLETED

Study phase

Target enrollment

10 participants

Primary outcome timeframe

Baseline and repeated at exit (length of program involvement was median (range) 6 (2-8) months)

Results posted on

2026-07-21

Participant Flow

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.

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.

Participant milestones

Participant milestones
Measure	Parent Coaching 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: * Introductions and rapport building which will include a demographic survey with a needs assessment, and the Family Empowerment Scale (FES) * A series of coaching points which may include some or all of the following topics * Interviewing and selecting a home health agency * Expectation setting for home based nursing care * Tips for finding home health professionals from inpatient nursing * Tips for using personal and professional care networks to find and recruit home health team members * An exit interview assessment including the FES and components of the demographic survey that may have changed
Overall Study STARTED	10
Overall Study COMPLETED	9
Overall Study NOT COMPLETED	1

Reasons for withdrawal

Withdrawal data not reported

Baseline Characteristics

Parent-to-parent Coaching While Awaiting Hospital Discharge With a Child With a Ventilator

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure	Parent Coaching n=10 Participants 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: * Introductions and rapport building which will include a demographic survey with a needs assessment, and the Family Empowerment Scale (FES) * A series of coaching points which may include some or all of the following topics * Interviewing and selecting a home health agency * Expectation setting for home based nursing care * Tips for finding home health professionals from inpatient nursing * Tips for using personal and professional care networks to find and recruit home health team members * An exit interview assessment including the FES and components of the demographic survey that may have changed
Sex: Female, Male Female	10 Participants n=10 Participants
Sex: Female, Male Male	0 Participants n=10 Participants
Race (NIH/OMB) American Indian or Alaska Native	0 Participants n=10 Participants
Race (NIH/OMB) Asian	0 Participants n=10 Participants
Race (NIH/OMB) Native Hawaiian or Other Pacific Islander	0 Participants n=10 Participants
Race (NIH/OMB) Black or African American	6 Participants n=10 Participants
Race (NIH/OMB) White	4 Participants n=10 Participants
Race (NIH/OMB) More than one race	0 Participants n=10 Participants
Race (NIH/OMB) Unknown or Not Reported	0 Participants n=10 Participants
Ethnicity (NIH/OMB) Hispanic or Latino	4 Participants n=10 Participants
Ethnicity (NIH/OMB) Not Hispanic or Latino	6 Participants n=10 Participants
Ethnicity (NIH/OMB) Unknown or Not Reported	0 Participants n=10 Participants
Family Empowerment Scale Score	142 Family Empowerment Scale Score n=10 Participants

PRIMARY outcome

Timeframe: Baseline and repeated at exit (length of program involvement was median (range) 6 (2-8) months)

Population: Nine parents completed the FES at exit. One mother did not complete exit activities because her child died before completing the coaching program.

Outcome measures

Outcome measures
Measure	Parent Coaching n=9 Participants 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: * Introductions and rapport building which will include a demographic survey with a needs assessment, and the Family Empowerment Scale (FES) * A series of coaching points which may include some or all of the following topics * Interviewing and selecting a home health agency * Expectation setting for home based nursing care * Tips for finding home health professionals from inpatient nursing * Tips for using personal and professional care networks to find and recruit home health team members * An exit interview assessment including the FES and components of the demographic survey that may have changed
Change in Parent Empowerment as Measured by the Family Empowerment Scale (FES)	5.2 Family Empowerment Scale Score Interval 2.2 to 13.3

SECONDARY outcome

Timeframe: At study exit (length of program involvement was a median (range) 6 (2-8) months)

Population: Nine caregivers completed the exit survey and interview.

Parents will have selected a nursing agency for the home health nursing care of their child.

Outcome measures

Outcome measures
Measure	Parent Coaching n=9 Participants 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: * Introductions and rapport building which will include a demographic survey with a needs assessment, and the Family Empowerment Scale (FES) * A series of coaching points which may include some or all of the following topics * Interviewing and selecting a home health agency * Expectation setting for home based nursing care * Tips for finding home health professionals from inpatient nursing * Tips for using personal and professional care networks to find and recruit home health team members * An exit interview assessment including the FES and components of the demographic survey that may have changed
Number of Participants That Completed Nursing Agency Selection	8 Participants

SECONDARY outcome

Timeframe: 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).

Outcome measures

Outcome measures
Measure	Parent Coaching n=9 Participants 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: * Introductions and rapport building which will include a demographic survey with a needs assessment, and the Family Empowerment Scale (FES) * A series of coaching points which may include some or all of the following topics * Interviewing and selecting a home health agency * Expectation setting for home based nursing care * Tips for finding home health professionals from inpatient nursing * Tips for using personal and professional care networks to find and recruit home health team members * An exit interview assessment including the FES and components of the demographic survey that may have changed
Categorical Rating of Met Nursing Needs Not Staffed	1 participants
Categorical Rating of Met Nursing Needs Somewhat staffed	3 participants
Categorical Rating of Met Nursing Needs Mostly/fully staffed	5 participants

SECONDARY outcome

Timeframe: 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.

Outcome measures

Outcome measures
Measure	Parent Coaching n=9 Participants 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: * Introductions and rapport building which will include a demographic survey with a needs assessment, and the Family Empowerment Scale (FES) * A series of coaching points which may include some or all of the following topics * Interviewing and selecting a home health agency * Expectation setting for home based nursing care * Tips for finding home health professionals from inpatient nursing * Tips for using personal and professional care networks to find and recruit home health team members * An exit interview assessment including the FES and components of the demographic survey that may have changed
Days Per Week Where at Least One Home Health Nursing Shift Was Filled 6 days of home health nursing	2 Participants
Days Per Week Where at Least One Home Health Nursing Shift Was Filled 1-4 days of home health nursing	0 Participants
Days Per Week Where at Least One Home Health Nursing Shift Was Filled 5 days of home health nursing	4 Participants
Days Per Week Where at Least One Home Health Nursing Shift Was Filled 7 days of home health nursing	2 Participants
Days Per Week Where at Least One Home Health Nursing Shift Was Filled 0 days of home health nursing	1 Participants

SECONDARY outcome

Timeframe: At study exit (length of program involvement was median (range) 6 (2-8) months)

Population: Nine families were interviewed at exit. One family that initially enrolled was not interviewed as the child died prior to completing the program.

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.

Outcome measures

Outcome measures
Measure	Parent Coaching n=9 Participants 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: * Introductions and rapport building which will include a demographic survey with a needs assessment, and the Family Empowerment Scale (FES) * A series of coaching points which may include some or all of the following topics * Interviewing and selecting a home health agency * Expectation setting for home based nursing care * Tips for finding home health professionals from inpatient nursing * Tips for using personal and professional care networks to find and recruit home health team members * An exit interview assessment including the FES and components of the demographic survey that may have changed
Satisfaction With Coaching Program	9 Participants

Adverse Events

Parent Coaching

Serious events: 0 serious events

Other events: 0 other events

Deaths: 0 deaths

Serious adverse events

Adverse event data not reported

Other adverse events

Adverse event data not reported

Additional Information

Sarah A. Sobotka, MD MSCP

University of Chicago

Phone: 7737021187

Email: [email protected]

Results disclosure agreements

Principal investigator is a sponsor employee
Publication restrictions are in place