Vivianne E. Baur

Participation of marginalized groups in evaluation: Mission impossible?

Responsive evaluation facilitates a dialogical process by creating social conditions that enhance equal input from all stakeholders. However, when multiple stakeholders are involved, some groups tend to go unheard or not be taken seriously. In these cases, empowerment of the more silent voices is needed. The inclusion of marginalized groups in evaluation is thus a challenge for evaluators. It raises questions about how to include all stakeholders in the evaluation process in a way that empowers marginalized stakeholder groups, and at the same time is acceptable for the dominant stakeholder groups. In this article we describe our experiences with a responsive evaluation project on the participation of client councils in policy processes in a Dutch residential care and nursing home organization. We focus on the value of hermeneutic dialogue (fostering mutual understanding and learning processes) in addressing the challenges of working with stakeholders in unequal relationships.

Inter-ethics: Towards an interactive and interdependent bioethics

Since its origin bioethics has been a specialized, academic discipline, focussing on moral issues, using a vast set of globalized principles and rational techniques to evaluate and guide healthcare practices. With the emergence of a plural society, the loss of faith in experts and authorities and the decline of overarching grand narratives and shared moralities, a new approach to bioethics is needed. This approach implies a shift from an external critique of practices towards embedded ethics and interactive practice improvement, and from a legal defence of rights towards fostering interdependent practices of responsibility. This article describes these transitions within bioethics in relation to the broader societal and cultural dynamics within Western societies, and traces the implications for the methodologies and changing roles of the bioethicist. The bioethicist we foresee is not just a clever expert but also a relationally sensitive person who engages stakeholders in reciprocal dialogues about their practice of responsibility and helps to integrate various sorts of knowledge (embodied, experiential, visual, and cognitive-scientific). In order to illustrate this new approach, we present a case study. It concerns a project focusing on an innovation in elderly care, based on the participation of various stakeholders, especially older people themselves.

Pioneering partnerships: Resident involvement from multiple perspectives.

Resident involvement in residential care homes is a challenge due to shortcomings of consumerist and formal approaches such as resident councils. The PARTNER approach aims to involve residents through collective action to improve their community life and wellbeing. The purpose of this article is to provide insights into the process of resident involvement by the PARTNER approach from the perspectives of multiple stakeholders, including residents, volunteers and staff members. A responsive evaluation was conducted, using participant observations, semi-structured interviews with residents, volunteers and professionals (n=16), and three focus groups. The findings show that critical elements in this process of resident involvement were the agenda-setting by residents, the formation of a cohesive resident group, the sharing of experiences and stories, the development of collective action, and the development of partnerships between residents and professionals and other stakeholder groups. Residents developed actions (gallery parties and a buddy project) to strengthen social interactions and realized these with the help of volunteers and professionals. We conclude that bringing residents together around a shared topic creates room for activism and leads to empowerment, feelings of social belonging and learning processes. We argue that it is a worthwhile enterprise to further develop structural partnership relations between residents, volunteers and staff in residential care homes.

“I Stand Alone.” An Ethnodrama About the (dis)Connections Between a Client and Professionals in a Residential Care Home

Client participation in elderly care organizations requires shifting traditional power relations and establishing communicative action that involves the lifeworlds of clients and professionals alike. This article describes a particular form of client participation in which one client was part of a team of professionals in a residential care home. Their joint remit was to plan the implementation of a new personal care file for residents. We describe the interactions within this team through an ethnodrama, based on participant observations and the embodied presence of the researcher (first author). The narratives and voices of all team members are dramatized in this ethnodrama. Throughout the project the team members experienced confusion relating to the confrontation between lifeworld and system, as experienced by the client and professionals in the team. We analyze these tensions by making use of a Habermasian theoretical framework. We conclude that forms for collective client participation in residential care homes should be developed based on communicative action between clients and professionals, with room for emotional engagement.

Older people as co-researchers: a collaborative journey

ABSTRACT In recent years there has been a distinguishable trend towards user involvement in ageing research. Researchers and policy makers both are increasingly convinced that user involvement is necessary to adapt research questions and methods to meet the needs of older people. Little is known, however, about the quality of collaborations between older people and researchers. This study systematically evaluates a collaboration undertaken between two academic researchers and three older people acting as co-researchers in an effort to identify the conditions required for equal collaboration. To evaluate the collaboration the co-researchers and academic researchers took part in individual in-depth interviews (after six months) and two reflection meetings (after six and 12 months). Throughout the collaboration, field notes were taken by both academic researchers and co-researchers. A detailed description of the collaboration is provided here, using the metaphor of a journey to illustrate the dynamics and the learning process of the participants. Interim reflection meetings – at which mutual expectations were expressed along with a frank discussion of prejudices, tasks and role divisions, and the sharing of personal and project-related needs and information – were found to be fruitful in achieving a positive working relationship and fostering an effective collaboration. We conclude that a learning perspective on participation can be a resource for learning and adaptive change.

Seeking Connections, Creating Movement: The Power of Altruistic Action

Participation of older people in designing and improving the care and services provided in residential care settings is limited. Traditional forms of democratic representation, such as client councils, and consumer models are management-driven. An alternative way of involving older people in the decisions over their lives, grounded in notions of care ethics and deliberative democracy, was explored by action research. In line with this tradition older people engage in collective action to enhance the control over their lives and those of others. In this article the theoretical background of altruistic action is presented and illustrated by a case example of a group of older women who changed the food policies within their residential home. Altruistic action is the joint and coordinated action by a group of clients based on their agenda. Such action is given in by a shared dissatisfaction and search for connections. Altruistic action may enhance the sense of self, belonging and ownership, and create a transformative movement enhancing the wellbeing and community life in residential settings.

User involvement in long-term care. Towards a relational care-ethics approach

User involvement in long‐term care has become official policy in many countries. Procedural and managerial approaches to user involvement have numerous shortcomings in long‐term care. What is needed is a different approach that is beneficial and tuned to the needs of clients and professionals.

Co-designing collaboration: Using a partnership framework for shared policymaking in geriatric networks:

Involving older people in policymaking is an emerging trend. In the literature no studies were found on the macro-level development of partnerships between older people and professionals in healthcare policy. The purpose of this article is to explore the potential of a partnership framework as part of action research (AR) for facilitating user involvement and collaborations in policymaking. We present a study in which older people became partners in eight regional geriatric research networks, as part of a national program to innovate elderly care. A partnership framework, consisting of conditions, actions, relations, and values, structured the AR study. In the study older people’s delegates and professionals co-designed this partnership framework by first separately deliberating in homogeneous meetings, followed by heterogeneous dialogue. In regional workshops this model was used to reflect on local partnership relations and to identify actions for implementation. Findings reveal that the partnership framework offered a structure to facilitate user involvement and the development of partnerships in the regional geriatric policy networks. We conclude that co-designing partnerships with the help of our framework is a useful approach to facilitate collaborative policymaking processes. Co-designing partnership may also be helpful in other AR studies.

The sensible health care professional: a care ethical perspective on the role of caregivers in emotionally turbulent practices

This article discusses the challenging context that health care professionals are confronted with, and the impact of this context on their emotional experiences. Care ethics considers emotions as a valuable source of knowledge for good care. Thinking with care ethical theory and looking through a care ethical lens at a practical case example, the authors discern reflective questions that (1) shed light on a care ethical approach toward the role of emotions in care practices, and (2) may be used by practitioners and facilitators for care ethical reflection on similar cases, in the particular and concrete context where issues around emotional experiences arise. The authors emphasize the importance of allowing emotions to exist, to acknowledge them and to not repress them, so that they can serve as a vehicle for ethical behavior in care practices. They stress the difference between acknowledging emotions and expressing them limitlessly. Formational practices and transformational research practices are being proposed to create moral space in care institutions and to support health care professionals to approach the emotionally turbulent practices they encounter in a way that contributes to good care for all those involved.

Participatie en partnerschap in ouderenzorginstellingen

SamenvattingDe slogan ‘cliënt centraal’ is ondertussen bijna een gemeenplaats. In de praktijk is het echter niet vanzelfsprekend dat cliënten op een betekenisvolle manier invloed kunnen ervaren op hun (gezamenlijke) leven binnen ouderenzorginstellingen. We nemen in dit artikel de inzichten en opbrengsten van zes jaar participatief actieonderzoek in een ouderenzorgorganisatie onder de loep. Welke kansen en uitdagingen worden zichtbaar wanneer ouderen, professionals en andere betrokkenen met elkaar samenwerken?