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Towards Becoming an Ecology of Care

Thinking about care in the organization of an ecology is central to the interdisciplinary research group Care Ecologies; found during a lockdown in the spring of 2021 and hosted by ARIAS Platform for Research Through the Arts and Sciences in Amsterdam. In Towards Becoming an Ecology of Care group members Valentina Curandi, Inte Gloerich, Ania Molenda, Maaike Muntinga, Natalia Sanchez Querubin, Nienke Scholts and Marloeke van der Vlugt, offer an initial articulation on their approaches and principles – performative practices, reflection, speculations - of what an ecology of care could be. While each bringing in different understandings of care, staying with those differences shaped the ways in which the agenda of the research group has been (un)settled. To exchange knowledge and experiences, the group uses various on- and off-line frameworks, like presentations and practice sessions. Exploring how activities that sustain a research group – coordinating, meeting, writing and documenting – may be done with care, this paper attempts to present a speculative proposition for functioning as a research ecology on and around care. Bringing into focus what care can do, while being attentive to what is neglected. This is not only done in writing but also becomes visible in the accompanying images compiled of material and immaterial memories. It is an ongoing process, for which the writing of this paper became a catalyst for reflection. While not aiming for clear answers the authors invite themselves and others to become more aware, devising and testing work strategies for care-based practices.

From complexity to co-creation : key aspects to ignite organisational change

‘New worlds open up’

Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each other's frames of reference and underlying values seems important. Wonder Lab practices provide a space to explore these differences by focusing together on life phenomena in curious and Socratic ways. Wonder Labs were organised with parents, healthcare professionals, and students involved in Dutch paediatric palliative care. The aim of this study was to develop an understanding of how participants experienced participating in Wonder Labs. We conducted twenty in-depth interviews with Wonder Lab participants and used inductive thematic analysis for data interpretation. Five themes were identified: Slowing down, Appreciating stories, Becoming vulnerable, Opening up and diving in, and Reframing perspectives. Participating in Wonder Labs allowed mothers, healthcare professionals, and students to contribute to deepening experiences and gain an expanded understanding of what is at play in caring for children with life-limiting and life-threatening conditions. Through working in pluralised groups, frames of reference and understandings complemented each other and could change. Participants often adopted a more open attitude towards others involved in care after participating and adapted day-to-day practices. Deliberating within paediatric palliative care on sensitive issues and their underlying personal and professional beliefs and values must be part of working together, without specific care situations being the catalyst. This may foster the mutual understanding needed in searching for quality of life, death, and bereavement.

Event design: social perspectives and practices

Events are becoming more complex as their range of functions grows, as meeting places, creative spaces, economic catalysts, social drivers, community builders, image makers, business forums and network nodes. Effective design can produce more successful business models that can help to sustain cultural and sporting activities even in difficult economic times. This process requires creative imagination, and a design methodology or in other words ‘imagineering’. This book brings together a wide range of international experts in the fields of events, design and imagineering to examine the event design process. It explores the entire event experience from conception and production to consumption and co-creation. By doing so it offers insight into effective strategies for coping with the shift in value creation away from transactional economic value towards social and relational value which benefit a range of stakeholders from the community to policy makers. Mega-events, small community events, business events and festivals in eight different countries are examined providing an international view of social issues in event design. A wide selection of current research perspectives is employed, integrating both theoretical and applied contributions. The multidisciplinary nature of the material means that it will appeal to a broad academic audience, such as art and design, cultural studies, tourism, events studies, sociology and hospitality.

Leisure events as catalysts for narrative change: the case of Kaya Kaya festival, Curaçao.

This qualitative study explores how leisure events can facilitate the creation of new narratives by analysing the case of the Kaya Kaya festival in Otrobanda, Curaçao. Kaya Kaya has played an instrumental role in transforming the dominant narrative of Otrobanda from a stigmatised area, perceived as problematic, to a vibrant, artistic neighbourhood. Through interviews and participatory workshops, including collage making, the study provides a nuanced view of how the event enabled narrative change by engaging the local community and altering physical spaces through murals and other art forms. It also examines the consequences of this narrative shift for the place, community, and individuals. The paper contributes to event studies by applying a narrative approach to understand the social value of events and by demonstrating how they can foster new, positive narratives for neighbourhoods. Ultimately, the study reveals that the new, progressive narrative remains incomplete, as a result of narrative construction.

When your partner dies: a conversation about writing and Post-Traumatic Growth in widowhood

Young widowhood, conceptualized as the loss of one’s spouse before the age of 50, is a profoundly painful and distressing loss (Den Elzen, 2017, 2018). The literature on young widowhood shows the death of a partner generally causes a fragmentation of the self, as it violates expectations of the normal life cycle, namely growing old together (Haase and Johnston, 2012; Levinson, 1997). Premature loss of one’s spouse tends to be experienced by the surviving partner as distressing or traumatizing, such as having witnessed their suffering in illness or through accident (Den Elzen, 2018) or in struggling with unfinished business (Holland et al, 2020). Whilst post-traumatic stress is well-known and has been widely researched across various disciplines, the concept of post-traumatic growth is much newer and by contrast has received less attention. PTG was introduced as a scholarly concept by Tedeschi and Calhoun in the mid-1990s and is defined as a positive psychological change as a result of the struggle with highly challenging life events (2004). Calhoun and Tedeschi’s notion of PTG has been backed by a recent systematic review. In the first meta-analysis of moderate-to-high PTG, Wu et al. found that of the 10,181 subjects, about 50% experienced PTG (2019). They also reported that women, young people and victims of trauma experienced higher levels of PTG than men, the elderly and those who experienced indirect trauma. PTG has attracted some controversy, with some researchers questioning its scientific validity (Jayawickreme and Blackie, 2014). Others caution against the minimization of people’s suffering. Hayward is a trauma counsellor who advises approaching PTG carefully, highlighting that if it is introduced with clients too early it can "often be construed as minimizing someone's pain and suffering and minimizing the impact of the loss" (cited in Collier, 2016, n.p.). In addressing the critique of PTG, Calhoun and Tedeschi (2006) emphasize that the focus on investigating positive psychological change following trauma does not deny the common and well-documented negative psychological responses and distress following severe life stresses: “Negative events tend to produce, for most persons, consequences that are negative” (p.4). They argue however, and their research supports this finding, that for many people distressful events can foster positive psychological changes. We view PTG as a possibility following (profound) loss, and emphasize that PTG may continue to co-exist with painful and/or unresolved emotions regarding the loss itself. We conceptualize PTG as a continuum and not as an either/or binary with grief. Further, we wish to highlight that PTG is a highly individual process that depends on many factors, and we are not suggesting that the absence of PTG is to be seen as a failure. This chapter intends to contribute to the study of PTG through a person-centered approach. The most used method to assess PTG is the 21-item posttraumatic growth inventory developed by Calhoun and Tedeschi in 1996 (Jayawickreme & Blackie, 2014). Self-reported posttraumatic growth has been the foundation of PTG research, which has aimed to identify to what extent PTG evokes improved psychological and physical health. In discussing our own creative narrative processes of PTG, our practice-led-research lens aims to contribute to research on how PTG might be fostered. We propose a Writing-for-wellbeing approach in this context and explore what it offered us both as writers and widows and what it might offer the field of Writing-for-wellbeing and by extension clinical and scholarly practice.