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.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
OTHER
Masking
NONE
Enrollment
10
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.
University of Chicago
Chicago, Illinois, United States
Change in Parent Empowerment as Measured by the Family Empowerment Scale (FES)
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.
Time frame: Baseline and repeated at exit (length of program involvement was median (range) 6 (2-8) months)
Number of Participants That Completed Nursing Agency Selection
Parents will have selected a nursing agency for the home health nursing care of their child.
Time frame: At study exit (length of program involvement was a median (range) 6 (2-8) months)
Categorical Rating of Met Nursing Needs
Participants were asked to rate their perception of met nursing needs (Not staffed, somewhat staffed, mostly staffed, or fully staffed).
Time frame: At study exit (length of program involvement was a median (range) 6 (2-8) months)
Days Per Week Where at Least One Home Health Nursing Shift Was Filled
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.
Time frame: At study exit (length of program involvement was a median (range) 6 (2-8) months)
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Satisfaction With Coaching 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.
Time frame: At study exit (length of program involvement was median (range) 6 (2-8) months)