Transition experiences of adolescents and young adults working with a patient navigator

Daniella San Martin-Feeney; Sophie Samborn; Brooke Allemang; Megan Patton; Zoya Punjwani; Ken Pfister; Laurel Ryan; Gregory M T Guilcher; Lorraine Hamiwka; Scott Klarenbach; Eddy Lang; Kerry McBrien; Alberto Nettel-Aguirre; Danièle Pacaud; Jorge Pinzon; Shannon D Scott; Lonnie Zwaigenbaum; Curtis Perrott; John Andersen; Gail Andrew; Andrew S Mackie; Susan Samuel; Gina Dimitropoulos

doi:10.1016/j.hctj.2024.100088

Transition experiences of adolescents and young adults working with a patient navigator

Health Care Transit. 2024 Nov 30:3:100088. doi: 10.1016/j.hctj.2024.100088. eCollection 2025.

Authors

Daniella San Martin-Feeney¹, Sophie Samborn², Brooke Allemang^{3

4

5}, Megan Patton², Zoya Punjwani^{2

6}, Ken Pfister², Laurel Ryan², Gregory M T Guilcher⁷, Lorraine Hamiwka², Scott Klarenbach⁸, Eddy Lang⁹, Kerry McBrien^{6

10}, Alberto Nettel-Aguirre^{2

11}, Danièle Pacaud^{2

12}, Jorge Pinzon², Shannon D Scott¹³, Lonnie Zwaigenbaum¹, Curtis Perrott¹⁴, John Andersen^{1

14}, Gail Andrew¹, Andrew S Mackie^{1

15}, Susan Samuel^{2

6

12}, Gina Dimitropoulos^{12

16

17}

Affiliations

¹ Department of Pediatrics, University of Alberta, Edmonton, Canada.
² Department of Pediatrics, University of Calgary, Calgary, Canada.
³ Office of Patient, Family, and Community Engagement, Hospital for Sick Children, Calgary, Canada.
⁴ Child Health Evaluative Sciences, SickKids Research Institute, Calgary, Canada.
⁵ Factor-Inwentash Faculty of Social Work, University of Toronto, Canada.
⁶ Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Canada.
⁷ Section of Pediatric Oncology and Blood and Marrow Transplant, Cumming School of Medicine, University of Calgary, Canada.
⁸ Department of Medicine, University of Alberta, Edmonton, Canada.
⁹ Department of Emergency Medicine, Cumming School of Medicine, University of Calgary, Calgary, Canada.
¹⁰ Department of Family Medicine, University of Calgary, Calgary, Canada.
¹¹ Faculty of Engineering and Information Services, University of Wollongong, Australia.
¹² Alberta Children's Hospital Research Institute, Calgary, Canada.
¹³ Faculty of Nursing, University of Alberta, Edmonton, Canada.
¹⁴ Glenrose Rehabilitation Hospital, Edmonton, Canada.
¹⁵ Stollery Children's Hospital, Edmonton, Canada.
¹⁶ Faculty of Social Work, University of Calgary, Calgary, Canada.
¹⁷ Mathison Centre for Mental Health Research and Education, Calgary, Canada.

Abstract

Introduction: The transition from pediatric to adult care poses challenges for adolescents and young adults (AYA) with chronic conditions and their caregivers. A patient navigator (PN) intervention may mitigate transition-related barriers.

Methods: A qualitative study was conducted within a pragmatic randomized controlled trial. A purposive sample was recruited of AYA with diverse diagnostic and demographic characteristics who worked with the PN and/or their caregivers. Seventeen participants completed semi-structured interviews at baseline and post-intervention and optional journal entries. Thematic analysis was used inductively.

Results: Analysis yielded two themes from baseline interviews: 1) uncertainty and hesitation with leaving a place of support, 2) navigator assistance with post-secondary education, and three themes from post-intervention interviews: 1) emotional support, 2) informational and task-focused support, 3) navigator guidance to become more independent.

Discussion: Our findings describe the needs of AYA and the experience of PN support; our findings may guide future implementation of PNs in transition care.

Keywords: Adolescent health; Transition; Transition to adult care.