Kip Jones

Diversities in approach to end-of-life: A view from Britain of the qualitative literature:

Objective: To systematically investigate qualitative literature on end-of-life issues and ethnicity/race/diversity, employing qualitative methods and philosophical concepts. Design: A database of 119 references was compiled using a range of techniques, including information foraging theory. Qualitative principles, such as ‘citation snowballing’ and ‘data saturation’, were utilised to gather and consolidate the literature. A model of ‘signal and noise’ was employed to balance methodological rigour against the strength of the message itself in the literature included in the final review. Results: Existing reviews of qualitative literature on palliative care are minimal, with little mention of ethnicity/race/diversity; palliative care generally pays little attention to qualitative methods. Concepts of ethnicity/race/diversity are socially constructed and these extend to the literature on end-of-life. Changing terminology of palliative care reflects emerging and competing ways to talk about the care provided to dying patients. Conclusions: The ‘cookbook’ approach to diversity creates new myths or stereotypes, compounding this with inaccuracies or misunderstandings. Aspects other than formal religious beliefs are overlooked and not all members of an ethnic group will routinely follow the beliefs of a specific faith. Healthcare providers must recognise that the basic values, principles and assumptions of Western medicine and bioethics are themselves historically situated and culturally determined. The rights of families to medical knowledge and their roles in decision-making are just as valid, inalienable and crucial to the cultural belief systems of many ethic minority communities as patient autonomy models are to Western medicine. A common theme emerging through the studies reviewed is a need for sensitivity to the varying expectations and mix of involvement of patients, practioners and families in end-of-life care and the need for information-sharing and decision-making amongst them, along a continuum of health and social care constructed by synthesis and integration of models emerging through this review.

Connecting Participatory Methods in a Study of Older Lesbian and Gay Citizens in Rural Areas

The aim in this paper is to present a discussion of the participatory research methods employed to explore intersectionality between sexuality, rurality and age through consideration of a research project investigating how older lesbian and gay citizens in rural southwest England and Wales interact with their local community. The aim of the project is to explore how older lesbian and gay citizens adjust to and connect with their rural environment, exploring the notion of a “rural idyll” for groups who may be seen as different. Discussion of the different methods used to explore themes surrounding connectivity, place, space and identity will be offered. These include a core biographic narrative interpretive method (BNIM), a visual ethnographic method, and an overarching participatory methodology. This methodological approach is reviewed using the six principles for working with disempowered groups identified by Whitmore and McGee (2001).

Music as a transfer of faith: Towards recovery and healing

I ride the Big Yellow Bus to work each day, travelling through a long strip of local businesses. A particular charity shop that I have noticed from the bus is ‘Hospital Radio Bedside’. Hospital radio began in York around 1925, broadcasting football commentary, church services and gramophone recordings to hospital patients. Now, eighty-five years later, the Hospital Broadcasting Association boasts about 300 stations in the UK (Watson, 2000). The name and purpose of this charity shop fascinated me. I wondered if this concept is, perhaps, a throwback to gentler times. I imagined early NHS patients — happy to have ‘free’ hospital care at all and ‘over the moon’ to discover that they also had a free radio at hand for their personal listening pleasure. A not-so-quiet revolution is currently taking place in qualitative health research. The use of tools from the arts and humanities, in both investigation of patient concerns and dissemination of data, is gaining critical mass (Jones, 2006). Photography, music, dance and so forth have been added to the researcher’s investigative toolbox and ‘performance’ — in the widest sense of the word — has become a catchphrase for the work of qualitative researchers no longer satisfied with typical PowerPoint conference presentations or journal restrictions. Qualitative investigators are courageously developing arts-based research methods and dissemination techniques in order to both investigate deeper and reach wider audiences. This is good news, not only for participants in research studies, who are often involved in producing subsequent performative reports, but also for the larger community to whom findings should be directed. Batt-Rawden’s paper contributes to the growing use of tools from the arts to investigate health concerns. This research, participatory and action-oriented, focuses on whether participants could learn to use music as a ‘technology’ of health promotion and self-care. This process consequently raised the musical consciousness of its study participants. The use of patients’ self-constructed musical autobiographies has resonance with the biographic work of McAdams (1993, 1994, 1995, 1996; McAdams et al., 1997). McAdams has devised a framework for the study of narrated lives that includes investigating the psychosocial construction of life stories through which modern adults create identity, and proposes a structure for the content of life stories (1996: 308–309). The naturally recurrent themes unearthed in Batt-Rawden’s study resonate

Meaningful dissemination produces the “long tail” that engenders community impact

Purpose Lack of understanding of the needs of older LGBT individuals is a global issue and their needs are often ignored by health and social care providers who adopt sexuality-blind approaches within their provision. As a result, public services can find it difficult to push the LGBT equalities agenda forward due to resistance to change and underlying discrimination. The aim of this paper is to discuss these issues. Design/methodology/approach This report considers how a body of participatory research concerning the needs and experiences of older LGBT people was used to create innovatory dissemination tools, which then engaged communities through public engagement to learn about the needs and experiences of older LGBT citizens. Good research has a “long tail” – (in statistics, “a large number of occurrences far from the ‘head’ or central part of the distribution”). The report considers how a film and a method deck of cards, presented to service providers in several workshops over time, offered opportunities to learn and critically reflect upon an informed practice. Findings Because of the on-going feedback from our workshops, the authors, in turn, learned the importance of having a champion within a community organisation to take forward the LGBT agenda. A report of one such outreach champion is included here. Originality/value Consideration is given to challenges involved in creating impact through research, and how participatory community processes may enhance impact to develop over time.

Involving Older Gay Men in Research: The Lure of Group Experience

This chapter considers ways to involve older gay men in research, reflecting upon the experience gained through two projects involving older gay men in group experiences. In both projects, male participants were keen to become involved in opportunities to meet and cooperate as groups, and relished the opportunity to come together to share their experiences. This chapter will explore why tools such as participatory action research and focus groups are appealing to older gay men as methods for sharing their experiences. It will consider how older gay men make use of the group experience, and the benefit this brings to an overall research project.

Emotivity and Ephemera Research

This chapter reports on a two-day experimental workshop in an arts-led interviewing technique using ephemera to elicit life stories and then reporting narrative accounts back using creative means of presentation. Participants told each other stories from their pasts based on objects that they presented to each other as gifts. Each partner then reported the shared story to the group using arts-led presentation methods.

True confessions: why I left a traditional liberal arts college for the sins of the big city

Purpose By means of several auto-ethnographic stories (including a scene from a working script for a proposed film), the author interrogates numerous ideas and misconceptions about gay youth, both past and present. A “bargain of silence” sometimes following gay sexual encounters in youth is described. The paper aims to discuss these issues. Design/methodology/approach The author recounts a sexual experience with a male college student in his past. This dissonance catapulted the author to move from his small liberal arts college to the city and begin his education again at an art college. Findings The author then describes his personal attraction to a 16-year-old boy who lived near his lodgings during one summer’s break from art college. This time, the relationship remained purely platonic, but that did not seem to matter where the boy’s parents were concerned. The author’s social position and pretence coupled with his romantic outlook convinced him that anything was possible, even this platonic love. The painful lesson learned that summer was that this was not the case, and never would be. The boy’s parents threatened Jones, and he never saw the youth again. The author continues by discussing his award-winning research-based film, Rufus Stone, and the reactions and conversations following screenings, particularly with youth. This present generation seems to Jones to be a sexually ambivalent one, more comfortable with multiple choices or no choice at all. Nonetheless, these young people do identify with the complexity of feelings and insecurities presented by youth within the film. Research limitations/implications In a recent report on sexuality of American high school students by the Center for Disease Control, researchers found an ambivalence and “dissonance” amongst youth regarding sexuality and choice. The author acknowledges that there remains a contemporary problem of genuine acceptance by society, and that there still is work to be done. He also admits that present-day attitudes by youth regarding sexuality are one that he had previously assumed to be historical ones. Originality/value Being straight or being gay can be viewed within the wider culture’s need to set up a sexual binary and force sexual “choice” decision-making for the benefit of the majority culture. Through the device of the fleeting moment, this essay hopes to interrogate the certainties and uncertainties of the “norms” of modernity by portraying sexuality in youth.