Development of a toolkit to enhance care processes for people with a long-term neurological condition: A qualitative descriptive study

Date
2018-06-01
Authors
Sezier, A
Mudge, S
Kayes, N
Kersten, P
Payne, D
Harwood, M
Potter, E
Smith, G
McPherson, KM
Supervisor
Item type
Journal Article
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Publisher
BMJ Publishing Group Ltd.
Abstract

Objective To (A) explore perspectives of people with a long-term neurological condition, and of their family, clinicians and other stakeholders on three key processes: Two-way communication, self-management and coordination of long-term care; and (B) use these data to develop a Living Well Toolkit', a structural support aiming to enhance the quality of these care processes. Design This qualitative descriptive study drew on the principles of participatory research. Data from interviews and focus groups with participants (n=25) recruited from five hospital, rehabilitation and community settings in New Zealand were analysed using conventional content analysis. Consultation with a knowledge-user group (n=4) and an implementation champion group (n=4) provided additional operational knowledge important to toolkit development and its integration into clinical practice. Results Four main, and one overarching, themes were constructed: (1) tailoring care:referring to getting to know the person and their individual circumstances; (2) involving others: Representing the importance of negotiating the involvement of others in the person's long-term management process; (3) exchanging knowledge: Referring to acknowledging patient expertise; and (4) enabling: Highlighting the importance of empowering relationships and processes. The overarching theme was: Assume nothing. These themes informed the development of a toolkit comprising of two parts: One to support the person with the long-term neurological condition, and one targeted at clinicians to guide interaction and support their engagement with patients. Conclusion Perspectives of healthcare users, clinicians and other stakeholders were fundamental to the development of the Living Well Toolkit. The findings were used to frame toolkit specifications and highlighted potential operational issues that could prove key to its success. Further research to evaluate its use is now underway.

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BMJ Open 2018;8:e022038. doi: 10.1136/bmjopen-2018-022038
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© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/