Abstract

BackgroundFollowing a neurological event, people’s long-term health and well-being is hampered by a system that struggles to deliver person-centred communication and coordinated care and fails to harness individual and family capability to live well with the condition. We aimed to implement and evaluate a toolkit package to support these processes for people with long-term neurological conditions.MethodsThis is a multi-phased study drawing on the principles of participatory research. In this pilot phase, the toolkit package was introduced to clinicians, who introduced it to clients in four neurorehabilitation settings (inpatient and community-based). Individual and focus group interviews were carried out with clients (n = 10) and clinicians (n = 9). Data were categorised by the four components of Normalisation Process Theory (NPT), and data within each component was then coded inductively. This analysis was used to inform revisions to the toolkit package and wider implementation processes.ResultsThere was widespread support for the principles underpinning the toolkit package from clients and clinicians. However, it was less clear how the client toolkit could support these principles in clinical practice which impacted buy-in. The flexibility of use of the client toolkit, which we encouraged, made it difficult for clinicians and clients to be clear about its purpose and for clinicians to operationalise in practice. Clinicians and clients identified a number of barriers that limited the time, energy and work users were able or prepared to invest, to the extent that uptake of the toolkit package was modest. Use of the toolkit package appeared more likely when clinicians perceived it to augment existing processes (e.g. goal setting) rather than detract from ‘doing’ therapy. This analysis was used to inform revisions to the toolkit package, including simplification of the client toolkit, development of videos with examples of use and a modular and reflective training package for clinical services. The refinements were intended to improve sense-making and minimise the cognitive barriers associated with implementation of a new intervention.ConclusionUnderstanding how supporting the client toolkit could add value to the therapeutic encounter was necessary for clinicians to invest time and perceive the worth of the toolkit package.Trial registrationANZCTR: ACTRN12614000537651. Registered 21 May, 2014.

Highlights

  • Following a neurological event, people’s long-term health and well-being is hampered by a system that struggles to deliver person-centred communication and coordinated care and fails to harness individual and family capability to live well with the condition

  • We constructed an acronym from the five key principles underpinned by our findings from phase 1 (Assume nothing, Discuss, Acknowledge expertise, Promote partnering, Tailor Care) – ADAPT (Fig. 2) to guide practice, which was incorporated into a prompt card with a central orienting question ‘Who is this person and what do they need from me today?’ We developed an electronic layered clinicians’ resource to provide more detail and examples of the ADAPT acronym in practice as well as quotes from the original data [14]

  • In total, 14 clinicians and 14 people with neurological conditions were exposed to the toolkit package

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Summary

Introduction

People’s long-term health and well-being is hampered by a system that struggles to deliver person-centred communication and coordinated care and fails to harness individual and family capability to live well with the condition. A change in how we work with people is clearly needed and studies have highlighted that relatively simple changes in how we listen to and work with patients can improve outcome, quality of care and assist people to take charge of their condition resulting in improved health [10,11,12,13]. The aim of this project was to operationalise these three processes (person-centred communication, harnessing of consumer’s strengths and resources and coordination of services across the lifespan) throughout the healthcare pathway through the development of a practical and workable toolkit. A detailed account of phase 1 and the toolkit development has been previously published [14]

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