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: 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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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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This applied research project aims to generate a better understanding of the effects of heatwaves on vulnerable population groups in the municipality of The Hague, and suggests ways in which the municipality can help such groups to cope with these heatwaves. The research was performed as a cooperation between The Hague University of Applied Sciences (THUAS), the International Institute of Social Studies (ISS, Erasmus University Rotterdam) and the International Centre for Frugal Innovation (ICFI, Leiden-Delft-Erasmus Universities). Heatwaves constitute an important yet often overlooked part of climate change and their impacts qualify as disasters. According to the World Disasters Report 2020, the three heatwaves affecting Belgium, France, Germany, Italy, the Netherlands, Spain, Switzerland and the UK in the summer of 2019 caused 3,453 deaths.1 2020 was a new record year for the Netherlands because it was the first time that a heatwave included five days in a row during which the temperature reached 35 degrees or more. In addition, 40 degrees was measured for the first time, and periods of tropical days and nights are generally getting longer. Most importantly, this trend is accelerating faster than the climate change models are predicting.2 In addition, the COVID-19 pandemic is compounding the effect of heatwaves, as vulnerable individuals may be reluctant to seek cool spaces out of fear of infection. Already in 2006, the Netherlands ranked near the top of the global disaster index due to the number of excess deaths that could be attributed to the heatwave. In the same year, the EU published the first climate strategy in which heat is recognised as a priority. In 2008, the Netherlands developed its first national heat plan.4 The municipality of The Hague has a municipal climate adaptation strategy and has developed a draft local heat plan in the summer of 2021, which was published in February 2022 . This research was not meant to be and was not set up as an evaluation of the current heat plan, which has not yet been activated. At the level of municipalities and cities, the concept of urban resilience is key. It refers to “the capacity of individuals, communities, institutions, businesses, and systems within a city to survive, adapt, and grow no matter what kinds of chronic stresses and acute shocks they experience”. Heatwaves clearly constitute acute shocks which are rapidly developing into chronic stresses. In turn, heatwaves also exacerbate the chronic stresses that are already there, i.e. existing chronic stresses also lead to greater impact of a heatwave. In other words, there are negative interaction effects. Addressing these effects requires overcoming the silo approach to urban governance, in which different municipal departments as well as other stakeholders (such as the Red Cross, housing corporations, tenants’ associations, care organisations, entrepreneurs etc.) each address different parts of the problem, rather than doing so in an integrated and inclusive manner. The dataset for this study is archived in DANS Easy: https://doi.org/10.17026/dans-xeb-h8uk
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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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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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Background: Research on maternity care often focuses on factors that prevent good communication and collaboration and rarely includes important stakeholders – parents – as co-researchers. To understand how professionals and parents in Dutch maternity care accomplish constructive communication and collaboration, we examined their interactions in the clinic, looking for “good practice”. Methods: We used the video-reflexive ethnographic method in 9 midwifery practices and 2 obstetric units. Findings: We conducted 16 meetings where participants reflected on video recordings of their clinical interactions. We found that informal strategies facilitate communication and collaboration: “talk work” – small talk and humour – and “work beyond words” – familiarity, use of sight, touch, sound, and non-verbal gestures. When using these strategies, participants noted that it is important to be sensitive to context, to the values and feelings of others, and to the timing of care. Our analysis of their ways of being sensitive shows that good communication and collaboration involves “paradoxical care”, e.g., concurrent acts of “regulated spontaneity” and “informal formalities”. Discussion: Acknowledging and reinforcing paradoxical care skills will help caregivers develop the competencies needed to address the changing demands of health care. The video-reflexive ethnographic method offers an innovative approach to studying everyday work, focusing on informal and implicit aspects of practice and providing a bottom up approach, integrating researchers, professionals and parents. Conclusion: Good communication and collaboration in maternity care involves “paradoxical care” requiring social sensitivity and self-reflection, skills that should be included as part of professional training.
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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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The evolving landscape of science communication highlights a shift from traditional dissemination to participatory engagement. This study explores Dutch citizens’ perspectives on science communication, focusing on science capital, public engagement, and communication goals. Using a mixed-methods approach, it combines survey data (n = 376) with focus group (n = 66) insights. Findings show increasing public interest in participating in science, though barriers like knowledge gaps persist. Trust-building, engaging adolescents, and integrating science into society were identified as key goals. These insights support the development of the Netherlands’ National Centre of Expertise on Science and Society and provide guidance for inclusive, effective science communication practices.
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Background: During COVID-19 measures face-to-face contact is limited and professional carers have to find other ways to support people with intellectual disabilities. COVID-19 measures can increase stress in people with intellectual disabilities, although some people may adapt to or grow from these uncertain situations. Resilience is the process of effectively negotiating, adapting to, or managing significant sources of stress and trauma. The current study aims to provide professional carers with new insights into how they can support people with intellectual disabilities. Method: An online survey was shared through the social media and organizational newsletters of MEE ZHN (a non-governmental organization for people with disabilities). The resilience framework by Ungar (2019) was adapted to fit to people with intellectual disabilities during COVID-19 measures. Statistical analyses were performed in SPSS statistics version 26. Results: Results show that professional carers applied diverse and distal methods to maintain contact with people with intellectual disabilities during the COVID-19 measures. Professional carers reported a significant decrease in the quality of contact with clients with intellectual disabilities, but overall high levels of resilience in the same clients. Implications: Online methods of communication are possibly insufficient for professionals to cover all needs of people with intellectual disabilities. During this pandemic professionals should be aware of stress but also of resilience in people with intellectual disabilities.
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