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Background: There is an increased interest in the role artists can play in care for older people. This momentum comes with the need to closer investigate the nature of boundary work of creative professionals in arts and health projects. Methods: We conducted a responsive evaluation to provide a thick description of the boundary work involved in ENCOUNTER#9, an intergenerational arts project taking place within an older person care setting. Results: Boundary work proved to be rewarding, yet messy and unruly. Although the lead artist had carefully planned and prepared the project and gained a broad commitment, not everything went according to plan. This led to friction and all involved put effort into adjusting goals and expectations. Conclusion: We add to the conceptualisation of boundary work in arts and health by showing that it takes place on different levels: personal, relational, organisational and public. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to explore the lived experience of dancing with Parkinson's and Multiple Sclerosis in an inclusive dance group called ReDiscoverMe (RDM). Methods: Participatory research approaches and interpretative phenomenological analysis were used to make sense of the lived experience captured in interviews and observations. Arthur Frank's conceptual framework on embodied storytelling from his book The Wounded Storyteller was the study's theoretical lens. Themes are both described and represented in images made by an RDM participant. Findings: Dancing in a nonjudgmental environment was described by participants as a way to rediscover themselves while continually adapting to living with chronic illness. We interpreted this experience of rediscovery as an active, recursive process involving three "movements": escaping, expanding, and embracing. Through these movements, participants could rise above the self and illness. Conclusions: The lived experience of dancing in this group was characterized by transformations of the body, self, and life. Through escaping, expanding, and embracing, participants could more easily embrace the body's contingency, integrate the self and body by becoming dancers, connect with others living with illness, and produce desire through passion. Participants could therefore experience illness as a journey and gain something from the experience. [ABSTRACT FROM AUTHOR]

The paper presents an alternative conceptualization of participation in order to offer legitimation and guidance for (new) scholars, policymakers and citizens, and to prepare them for the work that needs to be done to develop genuine participation practices that bring about positive change. Metaphors like the participation ladder not only explain and shape our communication but also shape the way we think and act. Metaphors can shape our perceptions and actions in ways we do not notice. So if we believe the critiques are correct and that participation encompasses much more than a hierarchical set of social relations that are devoid of context, we need an alternative lens that prepares us for the right expectations and unanticipated actions. Inspired by the work of the German philosopher Hannah Arendt, we shift away from a focus of participation ladders in decision-making to foreground acting and work instead, as this might help to overcome some of the current obstacles to designing genuine collaborative processes. [ABSTRACT FROM AUTHOR]

Participatory health research (PHR) and the use of arts-based methods continues to grow in popularity. Many scholars acknowledge the importance of (visual) ethics, especially in the dissemination of photographs in a digital age, but ethical issues that arise in relation to contact with the press and social media are not well documented. This article presents second-person action research of a critical case of photovoice in which ethical issues arose when a newspaper report reinforced stigma and was widely disseminated via social media. Press and social media can rapidly engage people for social change, but this also presents risks. What is the potential to de-stigmatize in such situations? The context of the case in this article is the participatory KLIK project, a Dutch initiative which aims to improve the health and resilience of school children aged 8–11 years in a deprived neighbourhood. Awareness of the possibility of political listening and viewing is fundamental for an ethical practice. This article shows the importance of co-ownership, media literacy and collaborative learning about ethics in PHR. [ABSTRACT FROM AUTHOR]

A growing body of evidence suggests the positive impact of arts on health and wellbeing. The mechanisms underlying the impact however, remain overlooked. 38 Semi-structured interviews were held with 30 older adults and 10 artists, involved in five participatory art projects in the Netherlands. Case-based framework and cross-over analyses were done on the basis of Cousins et al.'s taxonomy. Participatory art initiatives contributed to the wellbeing of older adults in a complex interplay with the artist, art form, group of participants, material aspects and continuity of activities. A welcoming environment appeared a consistent underlying mechanism for participants to grow on a personal and artistic level, connect with others and feel supported in their psychosocial wellbeing. This article demonstrates the important social function participatory art can have for older adults, and argues for the importance of a thorough consideration of the context wherein underlying mechanisms and outcomes emerge. [ABSTRACT FROM AUTHOR]

Can thwarted belongingness and perceived burdensomeness, risk factors for suicidal adolescents, be turned around by family group conferences? In this case study on Nick, a 17-year-old who undertook six suicide attempts, we (including Nick) share insights and learning opportunities on how family group conferences can be used. The thematic analysis suggests that family group conferences might be a promising intervention for suicidal adolescents. For Nick, the conference was a turning point in his life, correcting perceptions of being a burden, pushing back passiveness, and boosting connection with and support from the broad social network. [ABSTRACT FROM AUTHOR]

Social inclusion policies often assume that community integration is beneficial for all people with disabilities. Little is known about what actually happens in encounters between people with and without severe intellectual disabilities in the public space. Based on social-constructionist and responsive-phenomenological insights, we performed participant observation, semi-structured interviews and researcher reflexivity to study encounters between Harry (pseudonym), a man with a severe intellectual disability, his neighbours, fellow service-users, support professionals, and the first author. A thinking-with-theory strategy was adopted to interpret and deepen observations and reflections. We argue for more 'experimental-relational spaces of encounter' between people with and without severe intellectual disabilities, wherein the latter put down their verbal and cognitive weaponry. This proved to be more appropriate for spending 'quality time' with Harry then typical satisfactory neighbourhood interactions – often embedded in verbality, habits, routines and rationalizations that do not reflect the existence of people with severe intellectual disabilities. An increasing number of people with severe intellectual disabilities live in homes in a neighbourhood setting. However, in everyday neighbourhood life people with and without severe intellectual disabilities hardly ever encounter each other in a way both of them like. The research shows that this lack of pleasant encounters can be related to powerful rules about how we should interact in the public space in the 21st century. In the neighbourhoods we studied, people without intellectual disabilities are in control of these rules. They prefer verbal and cognitive interactions in the public space. Non-verbal and less cognitive approaches are often seen as inappropriate. The research recommends that people without intellectual disabilities should open up for more fitting ways to communicate with people who cannot speak (for themselves). [ABSTRACT FROM AUTHOR]

Co-production and service user involvement are increasingly encouraged in mental health care research. However, power hierarchies in knowledge can affect the co-production of knowledge by stakeholders. Therefore, the purpose of this article is to deepen our understanding of the relational dynamics at stake in co-researching teams and larger groups of stakeholders involved in research. We reflect on a process of co-production in psychiatric emergency care and show the ethical responsibilities of researchers in dealing with the power dynamics. A collaborative reflection on the process of co-production shows that the voices of service users, who participated as co-researchers, were silenced, thereby reinforcing epistemic injustice. Ethics of care offered guidance for ethical reflection and ways to manage relational dynamics. Instead of 'fight and flight', the 'tend and befriend' option was fruitful for relational ethically sound co-production, leading to teams and stakeholders jointly reflecting on knowledge co-production. Relational reflexive work brings people together for solidarity, support, and advice. [ABSTRACT FROM AUTHOR]

The popularity of Participatory Action Research (PAR) increases the risk of tokenism and blurring the boundaries of what might be considered 'good' PAR. This became a pressing issue when we were invited by the City of Amsterdam to conduct PAR on digital inequality with vulnerable citizens in Amsterdam, within serious constraints of time and budget. We decided to take up the challenge to offer citizens an opportunity to share their needs. This paper aims to increase the transparency of the complex reality of a PAR process in order to help new researchers learn about the challenges of PAR in real-life situations, and to open up the discussion on the quality and boundaries of PAR. Though we managed to implement some core ethical principles of PAR in this project, two were particularly under pressure: democratic participation and collective action. These jeopardized collective learning and might unintentionally feed stereotypes regarding people's capabilities. Nevertheless, this small and local study did manage to create ripples for change. [ABSTRACT FROM AUTHOR]

Eldercare professionals engaged in precarious work in the Netherlands faced shortages in personal protective equipment (PPE), testing, and staffing during the COVID-19 pandemic. This qualitative study of the health, financial situations, and paid and unpaid caring responsibilities of freelance eldercare workers illustrates how labor market inequalities have been (re)produced and exacerbated during the pandemic. Freelancers were pushed toward the margins of the labor market, working risky shifts and compromising their own interests, while unprotected by organizations, social security, or political efforts. Consequently, these workers were stretched to limits where they could no longer attend to their own health or to their paid and unpaid care responsibilities. The study places these empirical findings within Nancy Fraser and Rahel Jaeggi's theoretical work on capitalism, illustrating how eldercare workers found themselves at the center of boundary struggles during the pandemic. HIGHLIGHTS In the Netherlands, paid eldercare workers increasingly opt for freelance care work. During the pandemic freelance eldercare workers were seen as a health risk for clients. Some lost assignments; others were asked to work with insufficient PPE. As a result, many struggled with moral and financial dilemmas. Unions and other players in the Netherlands hold conflicting views on freelancers in eldercare. These views stand in the way of building an alliance to enhance the situations of all working in the sector. [ABSTRACT FROM AUTHOR]

Copyright of European Journal of Social Work is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Purpose: The purpose of this article is to show case study research focused on persons as a case and our personal engagement with the case can improve our innerstandings and understanding of person-centred care. Method: We present the methodology and epistemology of naturalistic case study research and illuminate this approach with the case study of Ellen, a young, Dutch, white-middle class woman with a compulsive disorder. We combine naturalistic case study research with the personal narratives of those involved in the research, including ourselves, and interpreted through a feminist and gender lens. Results: The case study research enhanced the personal and mutual understanding of all involved, including the researchers. Feminist and gender theory revealed the hidden personal motif for the choice of the case, and led to a re-viewing of the original story, offering a re-storying. Conclusion: We conclude that the personal motif as well as the use of our personal experiences to understand the case deserve more attention in case study research to address the complex interplay of social and intrapsychic dimensions, and develop more in-depth innerstandings for all engaged. [ABSTRACT FROM AUTHOR]

Purpose: Self-managed institutional homeless programmes started as an alternative to regular shelters. Using institutional theory as a lens, we aim to explore the experiences of stakeholders with the institutional aspects of a self-managed programs. Method: The data we analysed (56 interviews, both open and semi-structured) were generated in a longitudinal participatory case-study into JES, a self-managed homeless shelter. In our analysis we went back and forth between our empirical data and theory, using a combination of systematic coding and interpretation. Participants were involved in all stages of the research. Results: Our analysis revealed similarities between JES and regular shelters, stemming from institutional similarities. Participants shared space and facilities with sixteen people, which caused an ongoing discussion on (enforcement of) rules. Participants loathed lack of private space. However, participants experienced freedom of choice over both their own life and management of JES and structures were experienced more fluid than in regular care. Some structures also appeared stimulated self-management. Conclusion: Our analysis showed how an institutional context influences self-management and suggested opportunities for introducing freedom and fluidity in institutional care. [ABSTRACT FROM AUTHOR]

Aims: To understand the features of experiential knowledge with recovery and the process of social work students learning to use their experiential knowledge of recovery from an existential and emancipatory perspective. Methods: A participatory action research design was used in an applied university social work department in the Netherlands to develop a new curriculum for students using their experiential knowledge. Students were invited to disclose and share their personal experiences of recovery in the classroom and practice. Results: Experiential knowledge of recovery can be articulated as knowledge of finding a new balance in dualities of several existential themes. Social work students shared their experiences in a reflexive way and transcended their individual experiences to develop a critical subjectivity. They experienced their learning process as emancipatory and destigmatizing, but shame came up as a recurring theme. Making use of experiential knowledge sometimes conflicted with expectations of the social worker as a detached professional expert. Conclusion: Experiential knowledge of recovery can be articulated as knowledge of living with existential dualities. Profiling oneself as a social worker with existential knowledge of recovery has paradoxical aspects: it may weaken shame and combat stigmatization, but may reinforce stigma as well. [ABSTRACT FROM AUTHOR]

Family Group Conferencing is a new decision model to assign caring responsibilities among various actors in society, including the client, social networks, and professionals. The process of Family Group Conferencing in coercive psychiatry is delicate; nevertheless, it paves the way for courageous conversation, and it facilitates ownership over the problematic situation and the formation of a partnership. Different actors co-construct an open and new actuality by taking initiative during and after the Family Group Conference, by confronting each other; by sharing information about the situation and so forming a partnership. Family Group Conferencing requires a change in thinking and doing of mental health professionals that is close to nursing; instead of focusing on the treatment of individual clients, they support primary groups to deal with the situation at hand. [ABSTRACT FROM AUTHOR]

Background: Aphasia can have major consequences for participation. In line with other initiatives around the world, in the Netherlands aphasia centres provide support to people with aphasia and their relatives in the chronic phase to bridge the gap between therapy, rehabilitation, and participation in daily life. Although there is greater focus on participation in health care, the concept of participation is complex and not well-defined. Aims: The purpose of this paper is to understand the value and meaning of the aphasia centres in the Dutch context. We focus on the emic perspectives of people with aphasia and their relatives: how do aphasia centres contribute to building up a meaningful life with aphasia in the chronic phase and how do the centres support them to participate? Hence, this study also contributes to the understanding of the concept of participation and its meaning. Methods and procedures: This qualitative study used a naturalistic case study design in order to get an rich and multi-layered understanding of the context of aphasia centres. Within this context we focused on the experiences and perspectives of people with aphasia and their relatives. To secure involvement of people with aphasia themselves, research methods were attuned to their abilities to participate, and included participant observations, interviews, focus group meetings, and creative methods. Outcomes and results: Aphasia centres help people with aphasia to overcome isolation. They bring new goals and perspectives and help people find new meaning in life. They are experienced as a safe place to learn, overcome shame, and build self-confidence. Working in groups is a valuable element, providing a mutual sense of belonging. Also, people experience they can have a meaningful contribution by helping others. Relatives underscore these values and also feel supported in building up their life with their partner. Conclusions: Aphasia centres are a first step to overcome isolation and bear a first step towards participation in itself. They contribute to overcome barriers to relate to others by building self-confidence and overcome shame. This is a big step stone towards participation in the context outside the centre. From the perspectives of clients and relatives, participation is linked to the concept of being and belonging. At the same time, clients feel it is hard to meet societal norms of participation, framed as paid work, independency and self-reliance. This makes it harder to overcome shame. In this societal context, aphasia centres become even more relevant. [ABSTRACT FROM AUTHOR]

Social impact, defined as an effect on society, culture, quality of life, community services, or public policy beyond academia, is widely considered as a relevant requirement for scientific research, especially in the field of health care. Traditionally, in health research, the process of knowledge transfer is rather linear and one-sided and has not recognized and integrated the expertise of practitioners and those who use services. This can lead to discrimination or disqualification of knowledge and epistemic injustice. Epidemic injustice is a situation wherein certain kinds of knowers and knowledge are not taken seriously into account to define a situation. The purpose of our article is to explore how health researchers can achieve social impact for a wide audience, involving them in a non-linear process of joint learning on urgent problems recognized by the various stakeholders in public health. In participatory health research impact is not preordained by one group of stakeholders, but the result of a process of reflection and dialog with multiple stakeholders on what counts as valuable outcomes. This knowledge mobilization and winding pathway embarked upon during such research have the potential for impact along the way as opposed to the expectation that impact will occur merely at the end of a research project. We will discuss and illustrate the merits of taking a negotiated, discursive and flexible pathway in the area of community-based health promotion. [ABSTRACT FROM AUTHOR]

Purpose:The aim of this article is to describe how fatigue affects the lives of people with facioscapulohumeral dystrophy (FSHD), how they experience fatigue, and how they deal with it in order to attune rehabilitation care to patients’ needs. Method:A qualitative study, consisting of 25 semistructured interviews with patients with FSHD and severe fatigue (as measured with the checklist individual strength (CIS) fatigue questionnaire), was conducted to gain insight into the experiences of patients with fatigue. Data were inductively analyzed. Results:Patients describe fatigue as an overwhelming and unpredictable experience and they make a distinction between actual experienced fatigue and fear of becoming tired. Fatigue can, according to patients, be the result of weak muscles, physical overachieving or underachieving and stress. But most of the time patients do not know the actual causes of the fatigue, which makes it hard to deal with. The experienced fatigue has a large impact on participation, social contacts, and the quality of life of patients, and patients try to use many strategies to adapt themselves to the constantly changing situations. Conclusions:Fatigue is a severe problem in FSHD and has a huge impact on patients’ lives. Patients should be helped to reduce fatigue, for instance by offering evidence-based therapies such as aerobic exercise training or cognitive behavioral therapy.Implications for RehabilitationFatigue has significant influence on the quality of lives and participation of people with FSHD.Patients with FSHD are insufficient supported in coping with their fatigue.More attention for fatigue in patients with FSHD in rehabilitation is needed, for instance by a broader implementation of aerobic exercise training or cognitive behavioral therapy. [ABSTRACT FROM PUBLISHER]

Purpose:Little is known about the illness experiences of people with Facioscapulohumeral Muscular Dystrophy (FSHD). The aim of this study was to provide insight into the illness experiences of people with FSHD in order to tailor rehabilitation programs to individual needs and expectations. Methods:Twenty-five semi-structured interviews were conducted with people with FSHD. The interviews were audiotaped, transcribed and member checked. Computerized (MAXqda) and manual techniques were used for thematic data analysis. Results:Intra- as well as extra-individual aspects play a role in the illness experiences of people with FSHD. Integrating the consequences of the diagnosis and symptoms, coping with heredity and progenity, adjusting to a decreasing independence, and the accompanying changing relationship with one’s partner, are mentioned as intra-individual aspects. As extra-individual factors are the responses of the social environment, which was mentioned as well as used assistive devices, and maintaining or giving up work. Conclusions:Better understanding of the individual illness experiences, cognitions, and social context of people with FSHD can give health professionals tools to improve their care and give researchers direction for future studies to evaluate healthcare improvements from a holistic, patient-centred perspective.Implications for RehabilitationFSHD has a major impact on people’s lives. Besides the physical consequences, issues such as heredity, progenity, changing (intimate) relationships, social interactions and work should be addressed by rehabilitation professionals.Dependent on the timing of the diagnosis (early or later in life) people with FSHD could, in addition to medical consultation and physical therapy, profit from support by a social worker, occupational therapist and/or genetic Counselor for the above-mentioned themes to be addressed more extensively.It is relevant for rehabilitation professionals to become familiar with the personal characteristics and social circumstances of the patient before communicating the diagnosis and prognosis in order to individually tailor the content of the communication. [ABSTRACT FROM PUBLISHER]

The article offers information on the ethics of public and service user involvement in health research. Topics discussed include information on the need for participatory reflection on ethical issues; discussions on the public and user involvement a participatory approach for health and social well-being striving for maximum participation; and the increasing number of studies in the field of health care and medicine.

Copyright of European Journal of Social Work is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Community conferencing (CC) holds promise in terms of complementing the existing conflict resolution strategies in social housing. Between January 2011 and September 2013, we examined the process and impact of eleven community conferences in social housing practices in the north of the Netherlands using a naturalistic case-study approach. These practices were all situated in disadvantaged neighbourhoods characterised by a combination of problems, such as poverty, high unemployment rates, and a relatively high number of residents with psychosocial problems. We highlight findings from three cases that brought four crucial conditions for CC to the surface: (1) impartiality of the housing association and its capacity to establish a clear framework for a plan; (2) the need of a non-professional, independent coordinator who is engaged as a citizen and can prevent escalation of conflicts; (3) using so-called dialogue circles to ensure that every actor of the conference is empowered to participate; (4) widening the circle in the conference by involving community members. [ABSTRACT FROM AUTHOR]

This paper examines if and how responsive evaluation as a deliberative approach can serve as a guide for a politically oriented care ethics. A political care ethics puts the assignment of responsibilities and the inclusion of multiple perspectives of people at the centre of care. It honours the expressive-collaborative nature of care practices. It is responsive to political positions of vulnerability, fragility and resilience of those whom it concerns. From this, the interest in deliberative approaches is growing. Deliberative approaches aim to elicit, articulate and connect the voices of people with policy. Responsive evaluation is an empirical approach helpful to fostering mutual understanding, deliberation and inclusion. It aims to carefully understand perspectives of a variety of people and facilitate a dialogue between people on their experiences with a caring practice. The paper explores how responsive evaluators pay specific attention to asymmetric power relations and the way conflicts are handled by a case example. The case example focuses on the inclusion of professionals’ perspectives and illustrates that responsive evaluators actively reflect upon, energize and guide asymmetries in practices. This occurs by articulating and including multiple voices, searching for common ground, while simultaneously respecting differences. The paper concludes by discussing how responsive evaluation can be used to inform care ethics as a political ethics and how responsive evaluation may be enriched by care ethics itself. [ABSTRACT FROM AUTHOR]

Our objective was to explore the needs and value of case management according to patients with amyotrophic lateral sclerosis (ALS), their spousal caregivers, and health care professionals in the context of multidisciplinary ALS care. We undertook semi-structured interviews with 10 patients with ALS, their caregivers ( n = 10) and their ALS health care professionals ( n = 10), and held a focus group ( n = 20). We transcribed the audio-taped interviews and analysed all data thematically. Participants indicated that in certain circumstances case management can have an added value. They identified factors for receptiveness to case management: adequacy of usual care, rate of disease progression, and degree of social network support and personal factors of patients and spousal caregivers. Participants valued the time for consultation, house calls and proactive approach of the case manager. Patients with ALS and caregivers appreciated emotional support, whereas professionals did not mention the importance of emotional support by the case manager. In conclusion, ALS teams can consider implementation of valued aspects of case management (accessibility, ample time, proactive approach, emotional support) in the usual multidisciplinary ALS care. Additional support might be provided to patients with rapidly progressive disease course, passive coping style and small social network. [ABSTRACT FROM AUTHOR]

Inclusive research involves people with intellectual disabilities actively and strives for empowerment and normalisation. Less is written about the power dynamics in a research team consisting of researchers and people with intellectual disabilities and the possible value of such collaboration. In this auto-ethnography we reflect on these aspects and the challenges along the way. We conclude that striving for normalisation can be paralysing; ‘doing the same’ is not always possible and can be disempowering for all members of the research team. Acknowledging differences and uniqueness enriches research outcomes and makes us reflect on our own, sometimes rigid, academic frameworks. [ABSTRACT FROM AUTHOR]

Objectives:Many older adults have significant depressive symptoms but few people access care for these. This study explores which personal, clinical and need factors facilitate or hinder acceptance of a new outreaching preference-led intervention programme. Methods:From a sample of 9661 community-dwelling 65+ year olds, 244 persons with depressive symptoms according to the Patient Health Questionnaire-9 were included. Data on programme effectiveness in terms of care utilisation were collected. Associations between programme acceptance and personal, clinical and need factors were studied using quantitative (logistic regression analyses) and qualitative methods (semi-structured interviews with 26 subjects, who accepted (n= 20) or declined (n= 6) the programme). Results:Fifty-six per cent (n= 137) took part in the interventions. Quantitative logistic regression analyses showed that participants were more often female, suffered from more severe depressive symptoms and perceived more loneliness. Qualitative analyses revealed that people accepting the intervention programme felt that medical terms as having a depressed mood were applicable to their situation, more often perceived their symptoms as hindering, felt lonely and more often perceived a need for care. They were more often advised by their general practitioner to participate than individuals who refused the interventions. Many participating individuals did not see a match between the intervention programme and their needs, especially with respect to meeting new people. Conclusion:Many older persons with depressive symptoms did not feel the need to take part in the programme. Providing support in alleviating loneliness and further adaptation to older adults’ illness representations and perceptions when discussing depressive symptoms might enhance care utilisation. [ABSTRACT FROM PUBLISHER]

Primary objective: To describe factors influencing the QoL of patients with Parkinson's Disease (PD), as experienced by patients themselves. Research design: A qualitative design was used to investigate which factors influence the QoL of patients with PD as this design allows one to focus sufficiently on (reporting) the experiences of patients and their perspectives. Methods and procedures: Interviews with patients ( n = 27) were organized which formed the input for four focus groups and participants were selected by the Dutch Parkinson Association (PV). Main outcomes and results: The results illustrate that patients mentioned a broad array of issues related to their QoL, including intra- and interpersonal factors, quality of care, societal pressure and communication. Participants developed a model symbolizing a radar wheel to illuminate the complex and dynamic inter-relations between the themes affecting their QoL. How the set of factors actually influences a person's life differs per patient and per situation. Conclusions: The QoL of patients with PD is influenced by many interacting factors related to their health, personal relations, care, communication and society. To improve the QoL and care for persons with PD, all factors should be taken into account. Person-centred care recognizes the uniqueness and capabilities of patients with PD. [ABSTRACT FROM AUTHOR]

The expansion of the older population suggests that there will be significant numbers in need of care and support in their own home environment. Yet, little is known about the kind of situations professionals are faced with and how they intervene in the living environment of older people. Qualitative data were collected over a period of 1.5 years from a multi-disciplinary community-based geriatric team in the Netherlands, and participant observations carried out. Forty-two cases discussed within the team meetings were analysed. Results demonstrate that providing care to older people is a dynamic process and revolves around various paradoxes as experienced by professionals. This is illustrated by presenting three paradoxes that emerged within the data: respecting autonomy versus preserving safety; the care needs of the care recipients versus the capacity of their informal carers to cope; and holding a formal orientation versus a tailored orientation on tasks. Providing care in the home environment of older people requires from professionals a continuous anticipation of (un)expected evolutions in situations of their care recipients. In order to optimally support older people professionals need ‘professional discretion’. They must be supported to systematically reflect on and legitimize their intervention strategies. [ABSTRACT FROM AUTHOR]

Purpose: This paper describes a study in which patients with neuromuscular disease (NMD) were engaged to list top-priorities for scientific research in order to complement the researchers' agenda. Method: A dialogic model for research agenda setting was used. Interviews, focus groups and expert meetings with patients were held to identify research topics. Research topics were prioritized via a questionnaire. Agendas were integrated in a dialogue meeting with professionals and patients. Results: The research agenda of NMD patients is divided in four research domains, with a total of 24 research topics. These domains include (1) health; (2) quality of life; (3)quality of care and support, and (4) basic issues. Among the research domains highest priority was given to research on health, followed by research on quality of life. Conclusions: Both patients and professionals agreed a proper balance needs to be found between fundamental research and research on symptomatic treatment and quality of life. They concluded that more attention is required for research on the effective treatment of symptoms, quality of life and implementation of knowledge about NMD in regular care. [ABSTRACT FROM AUTHOR]

Introduction: Participation is important in rehabilitation of people with acquired brain injury (ABI). Studies have shown that their participation is problematic. It is, however, unknown how they experience their participation and what influences their participation. This study aims to answer the question how people with ABI experience participation and which environmental and personal factors may influence participation, as perceived by people with ABI. Methods: A qualitative methodology was conducted by a team consisting of researchers, people with ABI and a mother of a daughter with ABI. Interviews and focus groups were held and followed by a working group in order to develop actions for improvement. Results and conclusion: People with ABI contend that it is not the degree of participation that matters, but the quality of participation. They describe meaningful participation in terms of taking part, giving something and being someone. A model was constructed based on the experiences, which includes personal and environmental factors that, in interaction, may influence participation: participation is influenced by the process of recovery, support and treatment, the environment and society and communication and interaction. The study resulted in an overview of actions like continual care that may improve the participation of people with ABI. [ABSTRACT FROM AUTHOR]

This article is organized around the concept of "learning-in-organizing" to capture the collective, dynamic, and relational nature of how groups of persons, moving together through space and time, can come to gain knowledge and appreciation of a given issue through "storying" their experiences. Learning is understood as an integral part of the process of organizing. I suggest that the character and modes of learning vary depending on the stage of organizing. These move through stages of relative stability ("gaming") and change ("playing). The learning that takes place during a relative stable period has the character of monitoring and is primarily problem driven. During change, more complicated learning occurs. Inherited myths and rules are called into question; situations and problems are redefined as a result of the conflicting stories told by social actors. This article covers considerable theoretical and practical ground in outlining and illustrating this dynamic narrative approach to organizational learning. It includes a case concerned with making self-care a public issue among the communities of two performing art schools. The example shows that in situations where inherited narratives are no longer adequate, it is possible to foster transformational learning through reflexive dialogues if participants are willing to share their experiences, to take each other seriously, and to acknowledge multiplicity. [ABSTRACT FROM AUTHOR]

The article proposes an approach grounded in hermeneutic ethics to foster processes of relational autonomy and empowerment. It is said that hermeneutic ethics stimulates people to value and focus on emotions in stories. Concrete experiences and stories used to promote mutual learning are mentioned. The reasons for the importance of relational autonomy and empowerment for patient and citizen participation are also noted.

The article discusses several studies concerning the relationship between empirical research and normative ethics from a hermeneutic perspective. It cites that hermeneutic ethics aims to improve both practice and ethics by establishing a dialogue between healthcare practitioners, wherein ethicists as a catalyst plays an important role. Their roles include helping practitioners to elaborate normative perspectives and develop shared views on handling situations in social practice.

Protective measures that were taken during the COVID-19 pandemic, targeted older people as an at-risk group. The objective of this article is to investigate how older people in the Netherlands experienced the mitigation measures and whether these measures endorse and promote the idea of an age-friendly world. The WHO conceptual framework of age-friendliness, which consists of eight areas, has been used for a framework analysis of 74 semi-structured interviews with older Dutch adults, that were held during the first and the second wave of the pandemic. The results of the analysis indicate that the areas of social participation, respect and inclusion were affected most, and the measures concerning communication and the health services were experienced as age-unfriendly. The WHO framework is a promising tool for assessment of social policies, and we suggest its further development for this purpose. [ABSTRACT FROM AUTHOR]