Studio DöBra : creating spaces for engaging with end-of-life issues and interacting across generations through community-based arts activities

Abstract: Background: Studio DöBra was a community-based arts initiative about dying, death, and loss, involving children (9 years old) and older adults (most 80+) as participants. The goals were to support community engagement with end-of-life (EoL) issues and create opportunities for interaction between children and older adults. Studio DöBra was developed and studied in a collaboration between academic and community partners as part of the Swedish DöBra research program. It was informed and motivated by the Swedish context with an aging population, an age-segregated society, and a lack of community-engagement in EoL-issues. In Studio DöBra a community-based health promotion approach to EoL-issues was applied, based on the idea that these issues can be of concern to everyone, regardless of age. A variety of different arts activities were used as EoL-issues may be difficult to put into words. Aim: The overall research aim is to investigate the processes and impacts of developing, facilitating, and participating in Studio DöBra. A secondary aim is to investigate the experiences of professionals developing and facilitating initiatives that share characteristics of Studio DöBra. Methods: Studio DöBra was developed and investigated in a community-based participatory action research (CBPAR) process, with qualitative data generated throughout. Two iterations were developed (2016 and 2017-18) in different cities in Sweden. As the academic partner, I worked in collaboration with different community-organizations, e.g., organizations for children, older adults, and artistic organizations. Each iteration involved eight children and eight older adults in a series of five arts workshops addressing EoL-issues. Parallel to the first Studio DöBra iteration, I conducted exploratory interviews with professionals with experience from seven different initiatives that share characteristics of Studio DöBra. In 2018-19, together with community-partners from both iterations, we developed the Studio DöBra Toolbox, to document and disseminate findings to the general public; anchor lessons learned with management and local politicians; and inspire others to develop similar initiatives. This thesis is based on four articles. In Article I, the collaborative process of developing community-based intergenerational arts initiatives to engage communities in EoL-issues was investigated based on exploratory interviews from other projects and data from the first Studio DöBra iteration including follow-up interviews with community-partners. In Article II, follow-up interviews with older adults, children, and children’s parents were used to investigate how children and older adults motivate their participation, their experiences of participating, ways in which they were affected by participation, as well as how parents reflect on their child’s participation. Data analyses in articles I and II were guided by interpretive description. The aim of Article III was to explore mechanisms in arts activities that support community engagement with EoL-issues. An abductive analysis was carried out, using participant observation data from the arts workshops, follow-up interviews with participants and partners, and partners’ reflective meetings held in conjunction with each workshop, along with play theory. In Article IV, the aim was to investigate the impact of the Studio DöBra CBPAR process for partners, focusing on impact as both process and product. This was done though framework analysis expanding on Banks et al.’s (2017) theory of co-impact, based on longitudinal data from Studio DöBra, spanning 4.5 years. Findings: In developing Studio DöBra and similar initiatives, partners navigated power dynamics among partners and between people of different ages (I, IV). Partners were conceptualized as the “adults-in-between” the children and older adults in age, with power over and a sense of responsibility for these two age-groups, which could lead partners to deliberately or unwittingly, facilitate or hinder participants’ engagement with EoL-issues (I). Furthermore, partners were all supported by their jobs to develop Studio DöBra and the other investigated initiatives, however, they had different mandates and degrees of self-determination, which informed roles and affected their sense of ownership (I, IV). Children’s and older adults’ personal EoL-experiences and perceived lack of intergenerational interactions appeared to inform their motivation and participation in Studio DöBra. Some older adults were motivated by a desire for social connections and activities to counteract an increasing feeling of loneliness. Parents were generally positive about their child’s participation. Children and older adults seemed to act as individuals with agency in bonding across generations and in creating spaces for engaging with EoL-issues, both in Studio DöBra and in their social networks. They also seemed to appreciate learning about the ways others reflected about EoL-issues in Studio DöBra. Some parents and older adults spoke of having learned that they can talk with children about these issues. Although participants expressed a desire to maintain new intergenerational connections, challenges which seemed to relate to a lack of agency hindered this. (III) Modified play theory was used to explain four mechanisms in arts activities that support intergenerational engagement with EoL-issues: 1) The creation of a “Studio DöBra magic circle”, i.e., the spatial and temporal boundary separating the Studio DöBra workshops from “ordinary life”, created a space for intergenerational engagement with EoL-issues. 2) When facilitating, the partners tried to balance restrictions and freedoms in the topics, processes, and products of the arts activities. Determining restrictions and freedoms seemed to provide partners with a sense of control. When restrictions and freedoms appeared to be well-balanced, participants were independent in both the arts activity and engaging with EoL-issues. 3) Partners and participants approached EoL-issues through imagination and real-life experiences to deal with the potentially sensitive, abstract, and personal nature of these issues. 4) After each Studio DöBra workshop series ended, there were indications of a continuing sense of community, as shared experiences and products from arts activities seemed to bond participants. (III) Through the Studio DöBra CBPAR process, a conceptual model was developed that distinguishes three types of impact, i.e., impact on individual and group development, actionoriented impact, and strategy-oriented impact. The model describes impact as process as these types of impact are reciprocally interrelated and evolve from each other. Impact for Studio DöBra partners included developing interest, confidence, and skills in relation to intergenerational interactions and engagement with EoL-issues through arts activities, which partners applied in various ways in their professional practices and social networks. Furthermore, the Studio DöBra Toolbox was used in efforts to anchor lessons learned at higher levels of power, and initiate spinoff projects. (IV) Conclusion: This thesis contributes to an understanding of ways in which community-based intergenerational arts initiatives can be developed and facilitated to engage communityorganizations, older adults, children, and their parents in EoL-issues and stimulate intergenerational interaction. It also adds insight into ways in which impact can be understood as both product and process in CBPAR, and particularly in Studio DöBra.