How to foster successful implementation of a patient reported experience measurement in the disability sector: an example of developing strategies in co-creation

Marjolein Van Rooijen,Anneke Van Dijk-De Vries,Ruth Dalemans,Anna Beurskens,Albine Moser,Stephanie Lenzen

doi:10.1186/s40900-021-00287-w

Marjolein Van Rooijen, Anneke Van Dijk-De Vries + Show 4 more

Open Access

https://doi.org/10.1186/s40900-021-00287-w

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Abstract

BackgroundThe integrated uptake of patient-reported experience measures, using outcomes for the micro, meso and macro level, calls for a successful implementation process which depends on how stakeholders are involved in this process. Currently, the impact of stakeholders on strategies to improve the integrated use is rarely reported, and information about how stakeholders can be engaged, including care-users who are communication vulnerable, is limited. This study illustrates the impact of all stakeholders on developing tailored implementation strategies and provides insights into supportive conditions to involve care-users who are communication vulnerable.MethodsWith the use of participatory action research, implementation strategies were co-created by care-users who are communication vulnerable (n = 8), professionals (n = 12), management (n = 6) and researchers (n = 5) over 9 months. Data collection consisted of audiotapes, reports, and researchers’ notes. Conventional content analysis was performed.ResultsThe impact of care-users concerned the strategies’ look and feel, understandability and relevance. Professionals influenced impact on how to use strategies and terminology. The impact of management was on showing the gap between policy and practice, and learning from previous improvement failures. Researchers showed impact on analysis, direction of strategy changes and translating academic and development experience into practice. The engagement of care-users who are communication vulnerable was supported, taking into account organisational issues and the presentation of information.ConclusionsThe impact of all engaged stakeholders was identified over the different levels strategies focused on. Care-users who are communication vulnerable were valuable engaged in co-creation implementation strategies by equipping them to their needs and routines, which requires adaptation in communication, delimited meetings and a safe group environment.Trial registrationReviewed by the Medical Ethics Committee of Zuyderland-Zuyd (METCZ20190006). NL7594 registred at https://www.trialregister.nl/.

Highlights

The integrated uptake of patient-reported experience measures, using outcomes for the micro, meso and macro level, calls for a successful implementation process which depends on how stakeholders are involved in this process
Care-users who are communication vulnerable were valuable engaged in co-creation implementation strategies by equipping them to their needs and routines, which requires adaptation in communication, delimited meetings and a safe group environment
Setting We conducted the study at the Stichting Gehandicaptenzorg Limburg (SGL) (Disability Care Foundation Limburg, in English), a care organisation in the south of the Netherlands providing supported living and living arrangements to people with severe acquired, intellectual and developmental disabilities, mostly people with acquired brain injuries (ABI)

Summary

Introduction

The integrated uptake of patient-reported experience measures, using outcomes for the micro, meso and macro level, calls for a successful implementation process which depends on how stakeholders are involved in this process. This study illustrates the impact of all stakeholders on developing tailored implementation strategies and provides insights into supportive conditions to involve care-users who are communication vulnerable. In the Netherlands, around 10,000 people live with disabilities in supported living arrangements as a result of acquired brain injuries (ABI) [1] They are highly dependent on their professionals. The Dutch disability sector encourages the integrated uptake of PREMs, which means that information retrieved in the PREM is used to enhance deliverance of individual care (micro), to improve care on the organisational level (meso) and to facilitate external reporting (macro) [8]. Foster et al (2018) showed that time and resources to design the process (i.e., planning how data will be managed and used) and preparation of the organisations for the implementation (i.e., training professionals) are essential [10]

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