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

Journal article

Sezier, A., Mudge, S., Kayes, N., Kersten, P., Payne, D., Harwood, M., Potter, E., Smith, G. and McPherson, K. M. 2018. Development of a toolkit to enhance care processes for people with a long-term neurological condition: a qualitative descriptive study. BMJ Open. 8 (6). https://doi.org/10.1136/bmjopen-2018-022038
AuthorsSezier, A., Mudge, S., Kayes, N., Kersten, P., Payne, D., Harwood, M., Potter, E., Smith, G. and McPherson, K. M.
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.

KeywordsNeurological conditions; Long-term care; Improvements in care; Living Well Toolkit
Year2018
JournalBMJ Open
Journal citation8 (6)
PublisherBMJ Publishing Group
ISSN2044-6055
Digital Object Identifier (DOI)https://doi.org/10.1136/bmjopen-2018-022038
Official URLhttps://bmjopen.bmj.com/content/8/6/e022038
Publication dates
Online30 Jun 2018
Publication process dates
Accepted16 May 2018
Deposited21 Apr 2022
Accepted author manuscript
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File Access Level
Open
Output statusPublished
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