Services, models of care, and interventions to improve access to cancer treatment for adults who are socially disadvantaged: A scoping review protocol.

Timely access to guideline-recommended cancer treatment is known to be an indicator of the quality and accessibility of a cancer care system. Yet people who are socially disadvantaged experience inequities in access to cancer treatment that have significant impacts on cancer outcomes and quality of life. Among people experiencing the intersecting impacts of poor access to the social determinants of health and personal identities typically marginalized from society ('social disadvantage'), there are significant barriers to accessing cancer, many of which compound one another, making cancer treatment extremely difficult to access. Although some research has focused on barriers to accessing cancer treatment among people who are socially disadvantaged, it is not entirely clear what, if anything, is being done to mitigate these barriers and improve access to care. Increasingly, there is a need to design cancer treatment services and models of care that are flexible, tailored to meet the needs of patients, and innovative in reaching out to socially disadvantaged groups. In this paper, we report the protocol for a planned scoping review which aims to answer the following question: What services, models of care, or interventions have been developed to improve access to or receipt of cancer treatment for adults who are socially disadvantaged? Based on the methodological framework of Arksey and O'Malley, this scoping review is planned in six iterative stages. A comprehensive search strategy will be developed by an academic librarian. OVID Medline, EMBASE, CINAHL (using EBSCOhost) and Scopus will be searched for peer-reviewed published literature; advanced searches in Google will be done to identify relevant online grey literature reports. Descriptive and thematic analysis methods will be used to analyze extracted data. Findings will provide a better understanding of the range and nature of strategies developed to mitigate barriers to accessing cancer treatment.

A Qualitative Serial Analysis of Drawings by Thirteen-to Fifteen-Year-Old Adolescents in Sweden About the First Wave of the Covid-19 Pandemic.

In this article, we explore the perspectives of 13-15-year-olds living in Sweden about the first wave of the Covid-19 pandemic, through inductive analysis of 187 of their drawings. Through reconstructive serial picture analysis, three types of meaning were derived: (1) A new normal in dystopian scenery points to the disruption of daily life and development of new praxis and meaning in a context of threat and restriction; (2) Disrupted relationships refers to these adolescents' self-portrayal as solitary, without adult guidance or friends prominent; and (3) Negative emotions and compliant behaviors addresses a range of negative emotions and expressions of loss with few proactive strategies illustrated. General existential distress appears in these drawings, seemingly compounded by both developmental stage and other factors in addition to the pandemic context. Drawings suggest a restricted repertoire of ways of dealing with challenges confronting these adolescents, who seemed to feel left to their own resources.

Conceptualizing impact in community-based participatory action research to engage communities in end-of-life issues.

Background: A health promotion approach to end-of-life (EoL) care is gaining traction internationally. However, there is a lack of evaluations of the impact of this approach, particularly regarding community-based initiatives. Conceptualizations of impact in participatory action research (PAR) may contribute to understanding ways in which impact can be investigated in community-based health promotion approaches to EoL issues. We aim to investigate impact and the process of impact development in our community-based PAR project, Studio DöBra, a Swedish health promotion initiative to engage communities in EoL issues. Methods: We do this through a qualitative framework analysis expanding on Banks et al.'s theory of co-impact in PAR, based on longitudinal empirical data of Studio DöBra. Studio DöBra was developed in partnership with a range of community organizations and engaged children (9 years old) and older adults (most 80+) with topics related to dying, death, and loss through arts activities. The analyzed empirical data reflect the perspectives of community-partners and academic partners from interviews and meetings spanning 4.5 years. Findings: We present a model of impact development consisting of impact on individual and group development, action-oriented impact, and strategy-oriented impact; ways they relate to and evolve from one another; and how they may be affected by contextual influences. Conclusion: Besides contributing to conceptualizations of impact in PAR, findings contribute a community perspective to the limited literature investigating the impact of health promotion initiatives related to EoL issues.

Play Elements as Mechanisms in Intergenerational Arts Activities to Support Community Engagement with End-of-Life Issues.

Talking about dying, death, and loss may be difficult. Arts offer alternative ways of engaging with end-of-life (EoL) issues, but little is known about the means through which this occurs. In this article, we aim to explore mechanisms in arts activities that support community engagement with EoL issues, based on the community-based participatory action research project Studio DöBra. Studio DöBra was developed to support community engagement with EoL issues through intergenerational arts workshops involving community partners, children, and older adults. Initial analysis with community partners indicated the importance of play elements in arts activities. Continued analysis was therefore abductive, using play theory and qualitative data from Studio DöBra arts activities. Through iterative examination of theory and data, we modified play theory as we identified mechanisms supporting community engagement with EoL issues in arts activities. Findings can contribute to theory-building that can inform arts activities supporting community engagement with EoL issues.

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

Lack of community engagement in end-of-life issues and age-segregation in Swedish society motivated us to develop Studio DöBra, 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 DöBra. Based on analysis of exploratory interviews with professionals involved in other, similar initiatives and data from Studio DöBra 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.

Studio DöBra is a community-based initiative in which children (9 y/o) and older adults (mostly 80+) engaged with topics related to dying, death and loss through shared arts activities (e.g. collage, sculpture, games). In an ageing society, Sweden's end-of-life (EoL) care is increasingly professionalised and specialised, but there is little community involvement. One goal of Studio DöBra was therefore to support community engagement with EoL-related topics. Another goal was to create opportunities for interaction between children and older adults as there are few intergenerational meeting places. Two iterations of Studio DöBra were developed (2016, 2018) in different Swedish cities, utilising a community-based participatory research approach. Project groups comprised first author MK and representatives of community organisations such as meeting places for older adults, after-school centres and artistic organisations. Each iteration engaged eight children and eight older adults in a series of five workshops. This article investigates how children and older adults motivate their participation, their experiences of participating and ways in which they were affected by participation. We also investigate how parents reflect on their child's participation in Studio DöBra. Older adults, children and their parents were interviewed after each Studio DöBra. An inductive qualitative process guided by interpretive description was used to analyse the transcripts. Findings indicate that participants acted as individuals with agency in connecting across generations and in creating spaces for engaging with EoL-topics, not only in Studio DöBra but also in their social networks. Participants reflected on a changing sense of community through new intergenerational connections and social activities, and expressed a desire to maintain these. However, participants indicated sustainability challenges related to lacking agency in maintaining these spaces and sense of intergenerational community, as they rely on support from community organisations.

PA33†Reflections from the intersection of palliative care and design.

: This presentation is based on our reflections as two designers entering palliative care, one working with supportive environments for death and dying and one working with issues related to health-promoting palliative care. Death, dying and mourning are important universal conditions that raise existential thought and reflection. The focus of care is different here than in most other areas, as it is not about curing, and values go beyond medical perspectives. Thus, if we want to support meaningful experiences related to dying, it is necessary to look beyond institutional structures and disciplinary divisions. The practice of design has begun to move away from a primary concern with the commercial realm, to instead be used as a method to approach complexity to incrementally improve situations. A key aspect of this is to design with those concerned rather than for them. We argue that design related to contextual change requires an immersion within that context. An essential feature of design is making, and so, drawing on this disciplinary background, we iteratively try theories out, working towards minimising the gap between theory and practice. This approach, applied in a sensitive setting, has the potential to result in insights relevant in the particular situation, as well as offering transferable design methods. Convinced that the intersection of design and palliative care offers opportunities for both sectors, we will present concrete examples from our interdisciplinary research group, to talk about the opportunities and challenges of our work.