Feasibility and Acceptability of a Codesigned Health Care Transition Intervention for Young People With Spinal Cord Injuries

Overview

Journal Top Spinal Cord Inj Rehabil

Specialties Emergency Medicine
Rehabilitation Medicine

Date 2023 Dec 11

PMID 38076288

Authors

Emily Alice Bray

Ajesh George

Bronwyn Everett

Yenna Salamonson

Lucie M Ramjan

Affiliations

Soon will be listed here.

Abstract

Background: Due in part to medical complications, adults with a pediatric onset spinal cord injury (SCI) are at higher risk of experiencing dissatisfaction with life and lower perceived physical health when compared to their peers with no disability. To support the prevention of medical complications, young people with SCI must successfully transition to adult health care. Health care transition (HCT) interventions can support young people with chronic conditions in their move to adult health care.

Objectives: To evaluate the feasibility and acceptability of a web-based HCT intervention codesigned with young people with SCI and parents/caregivers.

Methods: Semi-structured individual interviews were conducted online with young people with SCI and parents/caregivers who transitioned or were preparing for the transition from pediatric to adult health care. Interviews were also conducted with health care professionals. The interviews were analyzed using a hybrid deductive and inductive qualitative content analysis process. Feasibility and acceptability were measured using Bowen and colleagues' framework, which includes eight focus areas: acceptability, demand, implementation, practicality, adaption, integration, expansion, and limited efficacy.

Results: Overall, participants responded positively to the intervention and believed that it would be useful to young people with SCI and parents/caregivers. Two areas of Bowen et al.'s framework, implementation and integration, require further consideration in terms of how to embed the intervention into the current transition process.

Conclusion: This study found the HCT intervention to be an innovative approach to support young people with SCI and their parent/caregivers that demonstrates promise in the areas of feasibility and acceptability.

References

Elo S, Kyngas H . The qualitative content analysis process. J Adv Nurs. 2008; 62(1):107-15. DOI: 10.1111/j.1365-2648.2007.04569.x. View

Joss N, Cooklin A, Oldenburg B . A scoping review of end user involvement in disability research. Disabil Health J. 2015; 9(2):189-96. DOI: 10.1016/j.dhjo.2015.10.001. View

Olmos-Vega F, Stalmeijer R, Varpio L, Kahlke R . A practical guide to reflexivity in qualitative research: AMEE Guide No. 149. Med Teach. 2022; :1-11. DOI: 10.1080/0142159X.2022.2057287. View

Anderson C, Vogel L, Betz R, Willis K . Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. J Spinal Cord Med. 2004; 27 Suppl 1:S98-106. DOI: 10.1080/10790268.2004.11753545. View

Nijland N, van Gemert-Pijnen J, Kelders S, Brandenburg B, Seydel E . Factors influencing the use of a Web-based application for supporting the self-care of patients with type 2 diabetes: a longitudinal study. J Med Internet Res. 2011; 13(3):e71. PMC: 3222177. DOI: 10.2196/jmir.1603. View

Coyne I, Prizeman G, Sheehan A, Malone H, While A . An e-health intervention to support the transition of young people with long-term illnesses to adult healthcare services: Design and early use. Patient Educ Couns. 2016; 99(9):1496-504. DOI: 10.1016/j.pec.2016.06.005. View

Graneheim U, Lindgren B, Lundman B . Methodological challenges in qualitative content analysis: A discussion paper. Nurse Educ Today. 2017; 56:29-34. DOI: 10.1016/j.nedt.2017.06.002. View

Orsmond G, Cohn E . The Distinctive Features of a Feasibility Study: Objectives and Guiding Questions. OTJR (Thorofare N J). 2015; 35(3):169-77. DOI: 10.1177/1539449215578649. View

Young N, Barden W, Mills W, Burke T, Law M, Boydell K . Transition to adult-oriented health care: perspectives of youth and adults with complex physical disabilities. Phys Occup Ther Pediatr. 2009; 29(4):345-61. DOI: 10.3109/01942630903245994. View

10.

Breakey V, Ignas D, Warias A, White M, Blanchette V, Stinson J . A pilot randomized control trial to evaluate the feasibility of an Internet-based self-management and transitional care program for youth with haemophilia. Haemophilia. 2014; 20(6):784-93. DOI: 10.1111/hae.12488. View

11.

Ammerlaan J, van Os-Medendorp H, Scholtus L, De Vos A, Zwier M, Bijlsma H . Feasibility of an online and a face-to-face version of a self-management program for young adults with a rheumatic disease: experiences of young adults and peer leaders. Pediatr Rheumatol Online J. 2014; 12:10. PMC: 3986975. DOI: 10.1186/1546-0096-12-10. View

12.

Porto A, Anderson L, Kalinich T, Deane K, Vogel L, Zebracki K . Understanding transition for youth with spinal cord injury: Youth and caregiver perceptions. J Spinal Cord Med. 2019; 43(4):505-511. PMC: 7480524. DOI: 10.1080/10790268.2019.1574437. View

13.

Bray E, Everett B, George A, Salamonson Y, Ramjan L . Co-designed healthcare transition interventions for adolescents and young adults with chronic conditions: a scoping review. Disabil Rehabil. 2021; 44(24):7610-7631. DOI: 10.1080/09638288.2021.1979667. View

14.

Stinson J, McGrath P, Hodnett E, Feldman B, Duffy C, Huber A . An internet-based self-management program with telephone support for adolescents with arthritis: a pilot randomized controlled trial. J Rheumatol. 2010; 37(9):1944-52. DOI: 10.3899/jrheum.091327. View

15.

Bray E, Salamonson Y, Everett B, George A, Chapman I, Ramjan L . Transitioning between paediatric and adult healthcare services: a qualitative study of the experiences of young people with spinal cord injuries and parents/caregivers. BMJ Open. 2022; 12(11):e065718. PMC: 9684994. DOI: 10.1136/bmjopen-2022-065718. View

16.

Bowen D, Kreuter M, Spring B, Cofta-Woerpel L, Linnan L, Weiner D . How we design feasibility studies. Am J Prev Med. 2009; 36(5):452-7. PMC: 2859314. DOI: 10.1016/j.amepre.2009.02.002. View

17.

Bray E, Everett B, George A, Salamonson Y, Ramjan L . Developing a Health Care Transition Intervention With Young People With Spinal Cord Injuries: Co-design Approach. JMIR Form Res. 2022; 6(7):e38616. PMC: 9377469. DOI: 10.2196/38616. View

18.

Vogel L, Krajci K, Anderson C . Adults with pediatric-onset spinal cord injuries: part 3: impact of medical complications. J Spinal Cord Med. 2002; 25(4):297-305. DOI: 10.1080/10790268.2002.11753632. View

19.

Bray E, George A, Everett B, Salamonson Y, Ramjan L . Protocol for developing a healthcare transition intervention for young people with spinal cord injuries using a participatory action research approach. BMJ Open. 2021; 11(7):e053212. PMC: 8323394. DOI: 10.1136/bmjopen-2021-053212. View

20.

Ammerlaan J, Scholtus L, Drossaert C, van Os-Medendorp H, Prakken B, Kruize A . Feasibility of a Website and a Hospital-Based Online Portal for Young Adults With Juvenile Idiopathic Arthritis: Views and Experiences of Patients. JMIR Res Protoc. 2015; 4(3):e102. PMC: 4705016. DOI: 10.2196/resprot.3952. View