Implementation of a patient-reported experience measure in a Dutch disability care organization: A process evaluation of cocreated tailored strategies.

INTRODUCTION: In 24/7 disability care facilities, patient-reported experience measures (PREMs) are important to help healthcare professionals understand what matters to care users and to improve the quality of care. However, the successful implementation of a PREM is complex. In a Dutch disability care organization, stakeholders cocreated tailored implementation strategies aimed at improving the use and integration of a qualitative PREM. This study gives insights into the uptake and experiences with these cocreated implementation strategies and the perceived impact of the set of strategies. METHODS: We performed a prospective process evaluation between February 2020 and February 2021. We collected data in three disability care facilities from 35 care users, 11 professionals, 3 facility managers and 4 organization representatives. Data collection included observations during kick-offs and learning goal meetings and several attendance checklists. We collected 133 questionnaires (Time 0 and Time 1). We conducted 35 individual semistructured interviews and an online focus group interview. Quantitative data were analysed using descriptive statistics and qualitative data using directed content analysis. RESULTS: The exposure to and adoption of strategies was between 76% and 100%. Participants were positive about tailoring the strategies to each facility. Implementation was hindered by challenges in care users' communication and COVID-19. The perceived impact referred to an improved understanding of the goal and added value of the PREM and better preparation and execution of the PREM. The impact of the set of strategies was mainly experienced on the micro level. CONCLUSION: The uptake of the cocreated implementation strategies was acceptable. The participants valued the tailored approach, which enabled them to focus on facility-specific learning goals. Stakeholder engagement and co-created strategies may have strengthened the adoption of and experiences with the implementation. PATIENT OR PUBLIC CONTRIBUTION: In this article, we present the process evaluation of implementation strategies for the integrated use of a PREM in disability care. A development group consisting of communication vulnerable care users, trainers and professionals developed the implementation strategies. The disability care organization was responsible for the planning and organization of the implementation process. During the process evaluation the end users, trainers, professionals and managers tailored the implementation strategies to their own settings and needs. Researchers observed this implementation process and interviewed the stakeholders about their experiences and the perceived impact.

Stakeholder engagement from problem analysis to implementation strategies for a patient-reported experience measure in disability care: A qualitative study on the process and experiences.

BACKGROUND: In implementation science, vast gaps exist between theoretical and practical knowledge. These gaps prevail in the process of getting from problem analysis to selecting implementation strategies while engaging stakeholders including care users. OBJECTIVE: To describe a process of how to get from problem analysis to strategy selection, how to engage stakeholders, and to provide insights into stakeholders' experiences. DESIGN: A qualitative descriptive design. SETTING AND PARTICIPANTS: The setting was a care organization providing long-term care to people with acquired brain injuries who are communication vulnerable. Fourteen stakeholders (care users, professionals and researchers) participated. Data were collected by a document review, five interviews and one focus group. Inductive content analysis and deductive framework analysis were applied. INTERVENTION: Stakeholder engagement. MAIN OUTCOME MEASURES: A three-step process model and stakeholders experiences. RESULTS AND CONCLUSION: We formulated a three-step process: (a) reaching consensus and prioritizing barriers; (b) categorizing the prioritized barriers and idealization; and (c) composing strategies. Two subthemes continuously played a role in how stakeholders were engaged during the process: communication supportive strategies and continuous contact. The experiences of stakeholder participation resulted in the following themes: stakeholders and their roles, use of co-creation methods and communication supportive strategies, building relationships, stimulus of stakeholders to engage, sharing power, empowerment of stakeholders, feeling a shared responsibility and learning from one another. We conclude that the inclusion of communication-vulnerable care users is possible if meetings are prepared, communication-friendly presentations and reports are used, and relationship building is prioritized.

Who said dialogue conversations are easy? The communication between communication vulnerable people and health-care professionals: A qualitative study.

OBJECTIVE: To gain insight into how communication vulnerable people and health-care professionals experience the communication in dialogue conversations, and how they adjust their conversation using augmentative and alternative communication (AAC) or other communication strategies. METHODS: Communication vulnerable clients and health-care professionals in a long-term care institution were observed during a dialogue conversation (n = 11) and subsequently interviewed (n = 22) about their experiences with the conversation. The clients had various communication difficulties due to different underlying aetiologies, such as acquired brain injury or learning disorder. Results from the observations and interviews were analysed using conventional content analysis. RESULTS: Seven key themes emerged regarding the experiences of clients and professionals: clients blame themselves for miscommunications; the relevance of both parties preparing the conversation; a quiet and familiar environment benefitting communication; giving clients enough time; the importance and complexity of nonverbal communication; the need to tailor communication to the client; prejudices and inexperience regarding AAC. The observations showed that some professionals had difficulties using appropriate communication strategies and all professionals relied mostly on verbal or nonverbal communication strategies. CONCLUSION: Professionals were aware of the importance of preparation, sufficient time, a suitable environment and considering nonverbal communication in dialogue conversations. However, they struggled with adequate use of communication strategies, such as verbal communication and AAC. There is a lack of knowledge about AAC, and professionals and clients need to be informed about the potential of AAC and how this can help them achieve equal participation in dialogue conversations in addition to other communication strategies.

Does adapting a self-report instrument to improve its cognitive accessibility for people with intellectual disability result in a better measure? - A cognitive interview study.

BACKGROUND AND AIMS: We investigated whether improving the cognitive accessibility of a widely used self-report measure leads to better understanding and more accurate answers in a sample of adults with mild intellectual disability and borderline intellectual functioning. METHODS AND PROCEDURES: We undertook a series of cognitive interviews before and after adaptation of the instructions and selected items of an existing self-report measure of adaptive functioning. Interview results and participant feedback were supplemented with quantitative comparisons between participant and carer scores. OUTCOMES AND RESULTS: Adaptation based on participant experiences and preferences combined with evidence-informed guidelines improved understanding and accuracy. Self-report and carer-report scores showed greater convergence after adaptation; this occurred because people with intellectual disabilities appeared to understand the self-report measure more effectively. CONCLUSIONS AND IMPLICATIONS: The results show that adaptation of the self-report instrument to suit the needs and preferences of people with mild intellectual disability or borderline intellectual functioning leads to a more accessible measure and more reliable and valid results. Results also highlight the importance of complementing proxy reports with a first-person perspective in assessment as clients and informants may differ in their assessment of behavior and skills.

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

BACKGROUND: 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. 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. METHODS: With 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. RESULTS: The 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. CONCLUSIONS: The 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 REGISTRATION: Reviewed by the Medical Ethics Committee of Zuyderland-Zuyd (METCZ20190006). NL7594 registred at https://www.trialregister.nl/ .

Exploring care-users experiences is important for decisions to improve quality of care. This applies to care-users in the disability care in particular, as these care-users are highly dependent on their care professional. Instruments that facilitate a dialogue between care-users and care professionals about experiences with care are not always used correctly. Furthermore, it is difficult to translate outcomes into decisions about improving quality of care for the individual care-user and the organisation. In our study, care-users, care professionals, management and researchers developed strategies together to improve the use of care-user experience measures.This study aims to show the impact of all participants, including care-users, professionals, management and researchers, on developing implementation strategies. Additionally, the study aims to show how care-users can participate in developing strategies whilst having problems with communication due to intellectual, developmental and acquired disabilities.We found that care-users gave crucial input to the look and feel, and understandability and relevance of the strategies. The contribution of the professionals had impact on how to use strategies and terminology used in instructions and visuals. Management shared lessons learned and represented the needs on the policy level. Researchers used their analytical skills and facilitated the group process. Care-users were able to collaborate by taking into account their needs and because information was presented to them clearly and attractively.

Psychometric properties of the community integration questionnaire adjusted for people with aphasia.

OBJECTIVES: To describe the feasibility of the Community Integration Questionnaire (CIQ) adjusted for use in people with aphasia and to report its psychometric properties in people with aphasia (internal consistency, factor analysis, test-retest reliability, convergent validity). DESIGN: A cross-sectional, interview-based psychometric study. Test-retest reliability was evaluated in 20 people (minimal to severe aphasia) by 2 different interviewers within a 2-week period. SETTING: Community. PARTICIPANTS: In total 490 stroke survivors with (minimal to severe) aphasia were approached, of which 165 (34%) participants returned the answering letter. Participants (N=150) agreed to take part and were interviewed using a structured interview format. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Community Integration Questionnaire (CIQ), Frenchay Aphasia Screening Test, Barthel Index, Dartmouth Coop Functional Health Assessment Charts (COOP)-World Organisation of Family Doctors (WONCA) Charts, Life Satisfaction Questionnaire. RESULTS: A total of 150 stroke survivors with aphasia completed the CIQ adjusted for people with aphasia. The CIQ adjusted for people with aphasia was a feasible instrument. Results showed good internal consistency for the CIQ total (standardized Cronbach alpha=.75), excellent test-retest reliability (intraclass correlation coefficient=.96), moderate correlations with the Barthel Index, the COOP-WONCA, and the Life Satisfaction Questionnaire with regard to construct validity. Significant relations were found with regard to age and aphasia severity. CONCLUSIONS: The CIQ adjusted for people with aphasia seems to be an adequate instrument to assess participation in people with aphasia.

Social participation through the eyes of people with aphasia.

BACKGROUND: Little is known about the way people with aphasia perceive their social participation and its influencing factors. AIMS: To explore how people with aphasia perceive participation in society and to investigate influencing factors. METHODS & PROCEDURES: In this qualitative study thirteen persons with aphasia and twelve central caregivers kept a pre-structured diary over two weeks, followed by a semi-structured interview. Diaries and interviews were transcribed verbatim and analysed by two researchers independently using codes, categories and central themes inductively. Plausibility of the analyses was discussed several times with a third independent senior-researcher. In a focus group interview, the results were discussed with the participants. OUTCOMES & RESULTS: The number of social activities and the character of these activities are not as important as the perceived engagement in the social activities for the participants. People with aphasia feel isolated but want to feel engaged. They feel burdensome to others and wish to function in an ordinary way. Extracting information from conversations is difficult but they want to know what is going on. Often they are not able to work and they wish to contribute to the community in other ways. Although they often feel stigmatized, they wish to be respected. Often they do not reach that goal. Perceived factors influencing engagement in social participation can be divided into personal, social and environmental factors. The following personal factors are reported: motivation, physical and psychological condition and communication skills. The social factors are: the role of the central caregiver and the characteristics of the communication partner(s), namely willingness, skills and knowledge. The environmental factors refer to quietness and familiarity of the place in which the person with aphasia live. CONCLUSIONS: Social participation is a theoretical concept that people with aphasia do not use. Instead, people speak in terms of engagement, involvement, having a feeling of belonging. People with aphasia describe the degree of engagement in activities in social life domains (i.e. the quality of activities) as more important than the quantity of performing activities.

Implementation of a Patient Reported Experience Measure in a Dutch disability care organisation: a qualitative study.

BACKGROUND: Patient Reported Experience Measures are promoted to be used as an integrated measurement approach in which outcomes are used to improve individual care (micro level), organisational quality (meso level) and external justification (macro level). However, a deeper understanding of implementation issues of these measures is necessary. The narrative Patient Reported Experience Measure "Dit vind ik ervan!" (English "How I feel about it!") is used in the Dutch disability care sector, but insight into its' current use is lacking. We aimed to provide insight into experiences with the implementation and current ways of working with "Dit vind ik ervan!" as an integrated measurement strategy. A descriptive qualitative study was done at a disability care organisation. Data were collected by nine documentations, seven observations, 11 interviews and three focus groups. We applied deductive content analysis using the Consolidated Framework for Implementation Research as a framework. RESULTS: Our analysis revealed facilitators and barriers for the implementation of "Dit vind ik ervan!". We found most barriers at the micro level. Professionals and clients appreciated the measure's narrative approach, but struggled to perform it with communication vulnerable clients. Some clients, professionals and team leaders were unfamiliar with the measure's aim and benefit. On the meso level, implementation was done top-down, and the management's vision using the measure as an integrated measurement approach was insufficiently shared throughout the organisation. CONCLUSIONS: Our study shows that Patient Reported Experience Measures have the potential to be used as an integrated measurement strategy. Yet, we found barriers at the micro level, which might have influenced using the measurement outcomes at the meso and macro level. Tailored implementation strategies, mostly focusing on designing and preparing the implementation on the micro level, need to be developed in co-creation with all stakeholders.

Facilitating the participation of people with aphasia in research: a description of strategies.

BACKGROUND: People with aphasia are often excluded from research because of their communication impairments, especially when an investigation into the communication impairment is not the primary goal. In our research concerning social participation of people with aphasia, we wanted to include people with mild, moderate as well as severe aphasia. AIM: To suggest strategies and techniques for research in people with aphasia based upon experiences in conducting research in this group of people. METHODS: We conducted a qualitative study and a quantitative study in people with aphasia concerning their social participation. In these studies different strategies were developed based upon the literature, conversations with people with aphasia and speech and language therapists, to facilitate the inclusion of people with aphasia, even those with severe communication problems. Several strategies were evaluated. The strategies used and our experiences are outlined in this report. MAIN CONTRIBUTION: It is possible to conduct research in this group. Several strategies were helpful to make this mission possible: the use of pre-structured diaries, the use of in-depth interviews with attention to non-verbal communication, the use of existing measurements, adjusted for people with aphasia by: using pictograms, placing one question per page, bolding the key concepts in the question, using large font, visualizing the answering possibilities in words and in pictures, reducing the question length, and excluding negatives in the question. CONCLUSION: Research in people with aphasia is possible when using strategies adjusted to the communicative impairment.

Optimising Service Delivery of AAC AT Devices and Compensating AT for Dyslexia.

To promote successful use of Assistive Technology (AT) supporting Augmentative and Alternative Communication (AAC) and compensating for dyslexia, the last steps of their provision, delivery and instruction, use, maintenance and evaluation, were optimised. In co-creation with all stakeholders based on a list of requirements an integral method and tools were developed.

The role of the physical environment in conversations between people who are communication vulnerable and health-care professionals: a scoping review.

PURPOSE: The role of the physical environment in communication between health-care professionals and persons with communication problems is a neglected area. This study provides an overview of factors in the physical environment that play a role in communication during conversations between people who are communication vulnerable and health-care professionals. METHOD: A scoping review was conducted using the methodological framework of Arksey and O'Malley. The PubMed, PsycINFO, CINAHL and Cochrane Library databases were screened, and a descriptive and thematic analysis was completed. RESULTS: Sixteen publications were included. Six factors in the physical environment play a role in conversations between people who are communication vulnerable and health-care professionals: (1) lighting, (2) acoustic environment, (3) humidity and temperature, (4) setting and furniture placement, (5) written information, and (6) availability of augmentative and alternative communication (AAC) tools. These factors indicated barriers and strategies related to the quality of these conversations. CONCLUSIONS: Relatively small and simple strategies to adjust the physical environment (such as adequate lighting, quiet environment, providing pen and paper) can support people who are communication vulnerable to be more involved in conversations. It is recommended that health-care professionals have an overall awareness of the potential influence of environmental elements on conversations. Implications for rehabilitation The physical environment is an important feature in the success or disturbance of communication. Small adjustments to the physical environment in rehabilitation can contribute to a communication-friendly environment for conversations with people who are communication vulnerable. Professionals should consider adjustments with regard to the following factors in the physical environment during conversations with people who are communication vulnerable: lighting, acoustic environment, humidity and temperature, setting and furniture placement, written information, and availability of AAC (augmentative and alternative communication tools).

Challenges in the communication between 'communication vulnerable' people and their social environment: an exploratory qualitative study.

OBJECTIVE: Communication vulnerable people are often unable to communicate effectively within their social environment, hindering client-centered care and participation in daily life. This study aims to explore the experiences of communication and the factors that influence this in long term care settings. METHODS: A qualitative study using the critical incident method. Communication vulnerable clients and people within their immediate environment were interviewed about their communication experiences. RESULTS: Thirty-nine individuals in three settings participated in the interviews, of which 14 were clients. Specific challenges in communication were presented in different relationships. The main influencing factors in the communication between clients and professionals were: effort put into improving the communication, knowledge of the professional, augmentative and alternative communication, time for communication and the influence and power of the client. CONCLUSION: Communication vulnerable people and people within their immediate environment face daily challenges in communicating with each other. In particular, communication among clients, can be very difficult. Augmentative and alternative communication tools are only rarely used. PRACTICE IMPLICATIONS: Professionals need to develop adequate knowledge and skills to improve their communication. Also, more attention should be focussed on use of AAC, communication between professionals and family members, and support in the communication among clients.

An investigation into the social participation of stroke survivors with aphasia.

PURPOSE: Aphasia can profoundly affect a person's capacity for social participation. The purpose of this study is to describe how people with aphasia participate socially, and to investigate the factors which are related to social participation. METHODS: A cross-sectional study was conducted in 150 people with aphasia using a structured interview format, adjusted to the communicative abilities of the participants. Data were analysed using descriptive statistics and multiple regression analyses. Measures used were the Frenchay Aphasia Screening Test, Barthel Index, Darmouth Coop Functional Health Assessment Charts/Wonca, Personal Factors Questionnaire, Environmental Factors Questionnaire and the Community Integration Questionnaire (CIQ). RESULTS: There was much variation in the social participation of people with aphasia (range total CIQ score: 4-25). The mean score on the CIQ was 14.2 (SD = 4.9), with the social integration subscale score contributing most to the total CIQ score. A low home integration score and a very low productivity score were found for this population. Age, gender, functional activities of daily living (ADL) performance and aphasia severity were related to social participation (adjusted R(2) = 0.37). CONCLUSIONS: Aphasia negatively affects long term social participation, together with other factors: functional ADL performance, age and gender. Environmental factors and personal factors do not independently contribute to the level of social participation.

Measures for rating social participation in people with aphasia: a systematic review.

BACKGROUND: Re-establishing participation in social life is an important aim of rehabilitation, but instruments to measure participation in people with aphasia are rare. AIMS: To identify and describe measures of social participation that may be specifically useful when measuring participation in people with aphasia. METHODS AND PROCEDURES: A systematic review of the literature concerning participation instruments was conducted. Then six speech and language therapists evaluated the suitability of selected participation measures for use in people with aphasia and a systematic literature review concerning the feasibility, internal consistency, validity, reliability and responsiveness of the measures selected by the therapists was carried out. RESULTS: In total 12 instruments measuring aspects of participation were found: seven measured actual performance and five measured actual performance combined with experienced problems. Two were considered unsuitable for people with aphasia, leaving 10. Six speech and language therapists working with people with aphasia scored the 10 selected instruments, and two instruments were judged as possibly suitable for use in people with aphasia: the Community Integration Questionnaire (CIQ) and the Nottingham Extended Activities of Daily Living (NEADL). However, the Community Integration Questionnaire is much closer to the concept of participation. The literature review concerning the psychometric properties of the Community Integration Questionnaire revealed that very little is known about the use of this instrument in people with aphasia. CONCLUSION: The Community Integration Questionnaire is possibly suitable for use in people with aphasia when measuring participation, but data on its psychometric properties in people with aphasia are absent.