294 - Home Health Nursing Agencies’ Services for Children with Medical Complexity: Caregiver and Home Health Nurse Perspectives

Saturday, April 29, 2023

3:30 PM – 6:00 PM ET

Poster Number: 294
Publication Number: 294.204

Sarah A.. Sobotka, University of Chicago, CHICAGO, IL, United States; Emma Lynch, University of Chicago Division of the Biological Sciences The Pritzker School of Medicine, Chicago, IL, United States; Savithri Nageswaran, Wake Forest School of Medicine of Wake Forest Baptist Medical Center, Winston-Salem, NC, United States

Presenting Author(s)

SS

Sarah A. Sobotka, MD, MSCP (she/her/hers)

Assistant Professor
University of Chicago
University of Chicago
CHICAGO, Illinois, United States

Background: Many children with medical complexity (CMC), particularly those with ventilator dependence, require the support of skilled nursing to live in their homes and communities. Home health agencies hire home health nurses and implement their training, scheduling, and assignments with families. Therefore, in order for children and families to flourish, families, home health nurses, and home health agencies must establish successful working relationships. To our knowledge no prior study has combined nurse and family perspectives on working with home health agencies to understand the critical challenges.

Objective: The objective of this study is to understand the perspective of home health nurses and parents of CMC on working with home health agencies in order to highlight the key strengths and challenges.

Design/Methods: Four datasets were combined in this analysis. In North Carolina (NC), 20 semi-structured interviews with 26 primary caregivers were completed 2012-2013 and 4 focus groups of 18 home health nurses were conducted 2013-2014. In Illinois, 20 semi-structured interviews were conducted with home health care nurses for children with invasive mechanical ventilation (iMV) between 2019-2022 and interviews were with 35 parents of children with iMV between 2019-2022. Each dataset was initially analyzed separately and themes common across datasets identified.

Results: In NC caregiver interviews were conducted with 19 mothers, 6 fathers, and 1 grandmother. Focus groups were conducted with 18 home health care nurses with an average of 7 years of experience. In IL caregiver interviews were conducted with 23 mothers and 12 fathers. Interviews were conducted with 20 home health nurses with an average of 11 years of experience. Four overlapping themes emerged. (1) There is a lack of uniform process in hiring nurses amongst home health agencies. (2) There was marked variability in training offered to nurses by agencies. (3) Communication particularly about scheduling was frustrating to caregivers and nurses. (4) Participants had little allegiance to a single agency and often changed or worked with multiple simultaneously. Illustrative quotes are presented in Table 1.

Conclusion(s):

Home health agencies coordinate and oversee critical services for CMC, yet perceived standards for hiring, training, and staffing by nurses and caregivers are lacking. Challenges contributed to changing agencies over time, and may contribute to issues with home nurse retention. Detailed investigation of this critical healthcare sector is needed to support vulnerable CMC and their families in the home environment.