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Developing a Patient Care Pathway for Emotional Support around the point of Multiple Sclerosis diagnosis: A Stakeholder Engagement Study

Tindall, Tierney; Topcu, Gogem; Thomas, Shirley; Bale, Clare; Evangelou, Nikos; Drummond, Avril; das Nair, Roshan

Developing a Patient Care Pathway for Emotional Support around the point of Multiple Sclerosis diagnosis: A Stakeholder Engagement Study Thumbnail


Authors

Tierney Tindall

GOGEM TOPCU GOGEM.TOPCU@NOTTINGHAM.AC.UK
Programme Manager (Neuroms)

Clare Bale

AVRIL DRUMMOND avril.drummond@nottingham.ac.uk
Professor of Healthcare Research

ROSHAN NAIR Roshan.dasnair@nottingham.ac.uk
Professor of Clinical Psychology and Neuropsychology



Abstract

Background: Diagnosing multiple sclerosis (MS) can be a lengthy process, which can impact psychological wellbeing, condition management, and future engagement with health services. Therefore, providing timely and appropriate emotional support may improve adjustment and health outcomes. Purpose: To develop a patient care pathway for providing emotional support around the point of diagnosing MS, and to explore potential barriers and facilitators to delivery and implementation. Methods: Focus groups were conducted with 26 stakeholders, including 16 people living with MS, five carers/family members, and five professionals working with people living with MS (three MS Nurses, one psychiatrist, and one charity staff member). Discussions were audio-recorded, transcribed verbatim, and analysed using framework analysis. Results: Participants suggested that a patient care pathway should include comprehensive information provision as a part of emotional support at diagnosis, and follow-up sessions with a healthcare professional. Barriers including increasing staff workloads and financial costs to health services were acknowledged, thus participants suggested including peer support workers to deliver additional emotional support. All participants agreed that elements of a care pathway and embedded interventions should be individually tailored yet provided within a standardised system to ensure accessibility. Conclusions: A patient care pathway was developed with stakeholders which included an embedded MS Nurse support intervention supplemented with peer support sessions. Participants suggested that the pathway should be delivered within a standardised system to ensure equity of service provision across the country.

Citation

Tindall, T., Topcu, G., Thomas, S., Bale, C., Evangelou, N., Drummond, A., & das Nair, R. (2023). Developing a Patient Care Pathway for Emotional Support around the point of Multiple Sclerosis diagnosis: A Stakeholder Engagement Study. Health Expectations, 26(2), 858-868. https://doi.org/10.1111/hex.13711

Journal Article Type Article
Acceptance Date Jan 11, 2023
Online Publication Date Jan 23, 2023
Publication Date 2023-04
Deposit Date Jan 16, 2023
Publicly Available Date Jan 23, 2023
Journal Health Expectations
Print ISSN 1369-6513
Electronic ISSN 1369-7625
Peer Reviewed Peer Reviewed
Volume 26
Issue 2
Pages 858-868
DOI https://doi.org/10.1111/hex.13711
Keywords multiple sclerosis, emotional support, diagnosis, qualitative, peer support, stakeholder engagement
Public URL https://nottingham-repository.worktribe.com/output/16218827
Publisher URL https://onlinelibrary.wiley.com/doi/10.1111/hex.13711