Navigating power dynamics in engaging communities in end-of-life issues – Lessons learned from developing community-based intergenerational arts initiatives about death and loss

Abstract

Lack of community engagement in end-of-life issues and age-segregation in Swedish society motivated us to develop Studio D€ oBra, a community-based intergenerational arts initiative to support community engagement in end-of-life issues and develop intergenerational meeting places. Representatives from several community organizations formed a project group with first author MK, to develop Studio D€ oBra. Based on analysis of exploratory interviews with professionals involved in other, similar initiatives and data from Studio D€ oBra development, we discuss challenges related to power dynamics in developing initiatives to engage communities in end-of-life issues, and how these can inform the development of similar initiatives.

Death, loss and community—Perspectives from children, their parents and older adults on intergenerational community‐based arts initiatives in Sweden

“…Contact theory also points to the necessity of external support for intergroup interaction (Kuehne & Melville, 2014). This is especially relevant for intergenerational interaction as children and older adults often depend on support from their communities to create spaces and possibilities for interaction (Hagestad & Uhlenberg, 2005; Kleijberg et al., 2019). Some participants indicated a lack of consistent community support.…”

“…Two Studio DöBra iterations (2016, 2018) were developed by project groups consisting of MK and community organisation representatives, through a community‐based participatory action research approach (Israel et al., 2017). Lessons learned from the first iteration informed development of the second (Kleijberg et al., 2019). The first Studio DöBra took place in a multi‐ethnic urban area just outside a large city, and the second in a mid‐sized town in another part of Sweden.…”

“…In the first setting, older participants were invited individually through the involved community organisations. This was more challenging than expected, partly because older adults had full agendas, health issues and/or limited mobility (Kleijberg et al., 2019). Therefore, another approach was taken in the second initiative.…”

“…This is done through a health promotion approach informed by the Ottawa Charter for Health Promotion (World Health Organization, 1986). As part of this program, a community‐based intergenerational arts initiative, Studio DöBra, was developed (Kleijberg, Ahlberg, Macdonald, Lindqvist, & Tishelman, 2019). The goals of Studio DöBra were to support community engagement in topics related to dying, death and loss and to create opportunities for interaction between children and older adults (Kleijberg et al., 2019).…”

“…As part of this program, a community‐based intergenerational arts initiative, Studio DöBra, was developed (Kleijberg, Ahlberg, Macdonald, Lindqvist, & Tishelman, 2019). The goals of Studio DöBra were to support community engagement in topics related to dying, death and loss and to create opportunities for interaction between children and older adults (Kleijberg et al., 2019). Studio DöBra was developed in a community‐based participatory research process (Israel et al., 2017) initiated by first author MK, a PhD student with a design background, in collaboration with relevant community organisations.…”