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. 2018 Jun 30;8(6):e022038.
doi: 10.1136/bmjopen-2018-022038.

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

Ann Sezier  1 , Suzie Mudge  1 , Nicola Kayes  1 , Paula Kersten  2 , Deborah Payne  1 , Matire Harwood  3 , Eden Potter  4 , Greta Smith  1 , Kathryn M McPherson  5
Affiliations

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

Ann Sezier et al. BMJ Open. .

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.

Keywords: long-term conditions; person-centred; qualitative research; toolkit.

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Conflict of interest statement

Competing interests: KMM is now director of HRC (funder of this project); however, she was not appointed to this role at the time this study took place. Since her appointment, KMM has taken on an advisory role as part of the steering group only.

Figures

Figure 1
Figure 1
Schematic representation of themes.
Figure 2
Figure 2
Healthcare user’s tool.
Figure 3
Figure 3
Clinician’s prompt card.
See this image and copyright information in PMC

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