Background: Talking Mats is a framework developed to support communication with communication vulnerable people. Objective: The objective was twofold: to provide an overview of the objectives, target groups and settings for which Talking Mats has been used (Part 1), and an overview of empirical scientific knowledge on the use of Talking Mats (Part 2). Methods: In this scoping review scientific and grey literature was searched in PubMed, Cinahl, Psycinfo, Google, and Google Scholar. Articles that described characteristics of Talking Mats or its use were included. For Part 2, additional selection criteria were applied to focus on empirical scientific knowledge. Results: The search yielded 73 publications in Part 1, 12 of which were included in Part 2. Talking Mats was used for functional objectives (e.g. goal setting) and to improve communication and involvement. Part 2 showed that Talking Mats had positive influences on technical communication, effectiveness of conversations, and involvement and decision making in conversations. However, the level of research evidence is limited. Conclusions: Talking Mats can be used to support conversations between professionals and communication vulnerable people. More research is needed to study the views of people who are communication vulnerable and to study the effects of Talking Mats.
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This dissertation describes a research project about the communication between communication vulnerable people and health care professionals in long-term care settings. Communication vulnerable people experience functional communication difficulties in particular situations, due to medical conditions. They experience difficulties expressing themselves or understanding professionals, and/or professionals experience difficulties understanding these clients. Dialogue conversations between clients and professionals in healthcare, which for example concern health-related goals, activity and participation choices, diagnostics, treatment options, and treatment evaluation, are, however, crucial for successful client-centred care and shared decision making. Dialogue conversations facilitate essential exchanges between clients and healthcare professionals, and both clients and professionals should play a significant role in the conversation. It is unknown how communication vulnerable people and their healthcare professionals experience dialogue conversations and what can be done to support successful communication in these conversations. The aim of this research is to explore how communication vulnerable clients and professionals experience their communication in dialogue conversations in long-term care and how they can best be supported in improving their communication in these conversations.
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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/. Plain English summary 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.
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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.
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Background: During the process of decision-making for long-term care, clients are often dependent on informal support and available information about quality ratings of care services. However, clients do not take ratings into account when considering preferred care, and need assistance to understand their preferences. A tool to elicit preferences for long-term care could be beneficial. Therefore, the aim of this qualitative descriptive study is to understand the user requirements and develop a web-based preference elicitation tool for clients in need of longterm care. Methods: We applied a user-centred design in which end-users influence the development of the tool. The included end-users were clients, relatives, and healthcare professionals. Data collection took place between November 2017 and March 2018 by means of meetings with the development team consisting of four users, walkthrough interviews with 21 individual users, video-audio recordings, field notes, and observations during the use of the tool. Data were collected during three phases of iteration: Look and feel, Navigation, and Content. A deductive and inductive content analysis approach was used for data analysis. Results: The layout was considered accessible and easy during the Look and feel phase, and users asked for neutral images. Users found navigation easy, and expressed the need for concise and shorter text blocks. Users reached consensus about the categories of preferences, wished to adjust the content with propositions about well-being, and discussed linguistic difficulties. Conclusion: By incorporating the requirements of end-users, the user-centred design proved to be useful in progressing from the prototype to the finalized tool ‘What matters to me’. This tool may assist the elicitation of client’s preferences in their search for long-term care.
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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 themicro level, need to be developed in co-creation with all stakeholders.
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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 communicationvulnerable care users is possible if meetings are prepared, communication-friendly presentations and reports are used, and relationship building is prioritized.
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Background The experiences of residents who have communication difficulties such as dysphasia are largely absent from the literature. Aim To illuminate the everyday experiences of four residents with severe communication difficulties living in a residential care setting in the Netherlands. Methodology & Methods A collective case study methodology was used. Seventy-five hours of observation, interview and documentary data was gathered over six weeks. Alternative strategies of communication were developed to enable the co-creation of dialogue between participants and researcher. For example, a participant who could not talk used intentionally created artwork to share her ideas with the researcher. Findings Participants' daily experiences were characterised by struggling against the constraints of the residential setting: having to wait, having unmet needs, experiencing vulnerability and uncertainty. Participants' communication difficulties exacerbated these constraints. Their experiences of struggling were sometimes ameliorated by significant social contact with family or particular staff members, and engaging in enjoyable activities. Occasionally the experiences of enjoying the here-and-now, and being 'seen' as a person by the other, would create beautiful moments in which truly person centred engagement would occur. These moments were neither articulated nor recorded, and were thus invisible after they had occurred. Similarly, the experiences of struggling against the constraints were neither acknowledged nor recorded. Significant experiences in the lives of these four residents were therefore invisible to others. The unifying theme representing the participants' daily experiences was: That which goes unsaid. Discussion It was necessary to develop communication strategies which would by-pass the researcher's assumptions and enable participants to introduce their own ideas and opinions. This ongoing process of co-creation of dialogue required work from, and trust between, participants and researcher. What is new? Expressly seeking the views of residents with communication difficulties Successfully using process consent with participants in this situation Using intentionally created artwork during data gathering in this context What has regional, national or international relevance? The findings indicate that people with communication difficulties may not receive optimal care in residential settings in the Netherlands. Methods are described which could be used by practitioners in their everyday work, and which show facilitators or practice developers how they can help carers to engage in more effective communication with this kind of resident. Additionally, this research contributes to the international discussion about ethical participation of vulnerable people in research.
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This article draws on findings of an international study of social workers’ ethical challenges during COVID-19, based on 607 responses to a qualitative survey. Ethical challenges included the following: maintaining trust, privacy, dignity and service user autonomy in remote relationships; allocating limited resources; balancing rights and needs of different parties; deciding whether to break or bend policies in the interests of service users; and handling emotions and ensuring care of self and colleagues. The article considers regional contrasts, the ‘ethical logistics’ of complex decision-making, the impact of societal inequities, and lessons for social workers and professional practice around the globe.
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Background: A paradigm shift in health care from illness to wellbeing requires new assessment technologies and intervention strategies. Self-monitoring tools based on the Experience Sampling Method (ESM) might provide a solution. They enable patients to monitor both vulnerability and resilience in daily life. Although ESM solutions are extensively used in research, a translation from science into daily clinical practice is needed. Objective: To investigate the redesign process of an existing platform for ESM data collection for detailed functional analysis and disease management used by psychological assistants to the general practitioner (PAGPs) in family medicine. Methods: The experience-sampling platform was reconceptualized according to the design thinking framework in three phases. PAGPs were closely involved in co-creation sessions. In the ‘understand’ phase, knowledge about end-users’ characteristics and current eHealth use was collected (nominal group technique – 2 sessions with N = 15). In the ‘explore’ phase, the key needs concerning the platform content and functionalities were evaluated and prioritized (empathy mapping – 1 session with N = 5, moderated user testing – 1 session with N = 4). In the ‘materialize’ phase, the adjusted version of the platform was tested in daily clinical practice (4 months with N = 4). The whole process was extensively logged, analyzed using content analysis, and discussed with an interprofessional project group. Results: In the ‘understand’ phase, PAGPs emphasized the variability in symptoms reported by patients. Therefore, moment-to-moment assessment of mood and behavior in a daily life context could be valuable. In the ‘explore’ phase, (motivational) functionalities, technological performance and instructions turned out to be important user requirements and could be improved. In the ‘materialize’ phase, PAGPs encountered barriers to implement the experience-sampling platform. They were insufficiently facilitated by the regional primary care group and general practitioners. Conclusion: The redesign process in co-creation yielded meaningful insights into the needs, desires and daily routines in family medicine. Severe barriers were encountered related to the use and uptake of the experience-sampling platform in settings where health care professionals lack the time, knowledge and skills. Future research should focus on the applicability of this platform in family medicine and incorporate patient experiences.
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