Reflections on doing participatory research in health: participation,method and power

The author has reflected on her experience in facilitating three participatory research (PR) projects to identify key issues surrounding participation, method and power. The three PR projects in health, all undertaken in the same region in southeast Australia, assessed the needs of women who have experienced breast cancer, evaluated an Indigenous healthy lifestyle programme and developed and documented a model of coordinated care by a consumer group. In particular, the three participatory projects suggested that participants do not always want to maximise their own participation and may prefer external researcher involvement – relationships, confidentiality, anonymity and time‐impacted perspectives of participation. In one study, quantitative methods were selected and time and previous knowledge of research shaped participants' selection of method. In the projects, power relations were complex and issues of negotiation, inclusion, quality of research, agendas, roles and integrity are discussed. The lessons learned here are that participatory researchers can be open to differing levels of participation and methods while also comfortable with sharing decision‐making in research, even if it alters the research outcome.     

Reflections on diaspora and soft power: community building among female US expats in Southern Europe

ABSTRACT

Illuminated by life stories of American women in Italy and Greece, our work examines a complex relationship between expatriate collectivity and soft power agency. The data were collected from in-depth interviews with 60 US nationals who live in Italy and Greece. Our findings show that these women shape as a strong diasporic collectivity through activities of ecological civic engagement, which, however, do not result in a successful exercise of soft power. The isolationist nature of their collectivity causes a number of diasporic mistakes and turns their chosen community project into a weak resource for soft power, a translation of which remains highly problematic. The basic mistakes that such expats make while exercising soft power are misunderstanding of the notions of community and its main building tool (civic engagement) as well as overall inability to learn the new culture quickly.     

Young people's reproductions of the ‘father as provider’ discourse: intersections of race,class, culture and gender within a liberal democracy

ABSTRACT

Despite a plurality of paternal forms available to men, certain enactments of fathering remain immobile. In South Africa the ‘father as provider’ discourse, which establishes the legitimate father as one who provides financially for his family, continues to be regarded as the primary mark of a good father. Using photo-elicitation interviews to interrogate the persistence of this discourse, this paper examines how adolescents from two low-resourced South African communities construct fathering. Using a critical intersectional discursive framework, the analysis focuses on how gender, race, class and culture are implicated in the reproduction of the ‘father as provider’ discourse. Participants’ constructions suggest that the father’s duty to provide is intensified within marginalised contexts. Central to participants’ reproductions of the ‘father as provider’ discourse was a neoliberal conception of ‘freedom of choice’. The paper concludes that South Africa’s post-apartheid reliance on discourses around liberal democracy has cast the low-income father’s ability to fulfil the provider role as a conscious choice. While the father is made responsible for his failure to provide, broader structural oppressions are in turn rendered largely invisible by such discourse.     

Social Research and the Privacy and Participation of Children: Reflections on Researching Australian Children's Playlore

Social research into the daily activities of children is important if we are to understand how children perceive themselves in relationship to their world. Ethically managed social research that allows children to speak as informed and competent subjects is thus vital. However, research regulatory bodies may be more concerned with protecting the privacy of children than facilitating their participation in research projects. In a context where publicly funded researchers are encouraged to make their data available for reuse, the bureaucratisation of the consent and ethics processes may impinge on the conduct and benefits, and the future accessibility, of the research itself. Reflecting on the findings of the Childhood, Tradition and Change research on playlore in Australian primary schools, we argue for a more balanced approach from regulatory authorities between protection and participation in relation to low‐risk social research with children.     

Critical humanism for public relations: Harnessing the synergy of gender,race and sexuality research

In the age of the Anthropocene, PR research has a role to play in making sense of and working to heal the widespread suffering of human and non-human beings. Public relations scholars have an ethical responsibility to work toward structural, systemic social change that reconciles suffering. Drawing from contemporary critical theories, we weave three strands of theory – critical feminism, critical theories of race, and queer theories – to carve out a theoretical trajectory in social justice guided by critical humanism. Critical humanism illuminates the subjugation and resistance of historically marginalized individuals and groups, attending to the influence of structures and institutions that underpin norms of whiteness, cisnormativity, and heterosexuality.     

Status variations in stress exposure: implications for the interpretation of research on race, socioeconomic status, and gender

Life events checklists have been the predominant method for estimating variations in stress exposure. It is unknown, however, whether such inventories are equally meaningful for estimating differences in exposure between men and women, African Americans and whites, and those in lower and higher socioeconomic categories. In this paper, we employ a wider range of measures of stress--recent life events, chronic stressors, lifetime major events, and discrimination stress--to examine the extent to which these dimensions collectively yield conclusions about status variations in stress exposure that are similar to or different from estimates based only on a life events checklist. Our analyses of data collected from 899 young men and women of African American and non-Hispanic white ancestry suggest that status differences in exposure to stress vary considerably by the measure of stress that is employed. Although women are more exposed to recent life events than men, males report more major events and discrimination stress than females. Our results also reveal that life event measures tend to substantially under-estimate differences between African Americans and non-Hispanic whites in exposure to stress. A similar pattern also holds for socioeconomic status. When stress is more comprehensively estimated, level of exposure profoundly affects ethnic differences in depressive symptomatology, accounting for almost half of the difference by socioeconomic status but contributing little to the explanation of the gender difference in distress. The implications of these findings for the debate over the relative mental health significance of exposure and vulnerability to stress are discussed.     

Research Note: The LIVITY study: research challenges and strategies for engaging with the black caribbean community in a study of HIV infection

There is an increasing incidence of new HIV‐1 diagnoses among black Caribbeans in the UK, but there has been limited research in this area. The LIVITY study is the first in‐depth epidemiological and behavioural study to examine the impact of HIV among black Caribbeans in the UK. The UK black Caribbean community has traditionally been regarded as less likely to participate in clinical research and surveys. We identified three major challenges to recruitment to the LIVITY study: general distrust of the research process; the considerable stigma surrounding HIV in the black Caribbean community and the sensitivity of obtaining detailed sexual histories. The strategies devised to help overcome these barriers to optimise recruitment included: the establishment of a black Caribbean Community Advisory Group to facilitate communication between the community and the researchers and assist in questionnaire design to improve acceptability to the participants; use of healthcare practitioners as gatekeepers; extensive piloting and modification of the questionnaire among black Caribbean patients; reassurances of confidentiality during recruitment; and ethnic matching between interviewer and study participants. Another challenge was the high rate of loss to follow‐up among eligible patients, potentially compromising the study’s generalisability. Nevertheless, use of the above strategies resulted in a satisfactory enrolment rate of 57%, who were representative of all eligible patients.     

Promoting resilience and emotional well-being of transgender young people: research at the intersections of gender and sexuality

Within lesbian, gay, bisexual and transgender (LGBT) research there is increasing health-related scholarship on trans lives, with a growing awareness of the impact of health inequalities on trans well-being. The aim of the paper is to provide greater understanding of transgender young people’s views of what is needed to promote their emotional well-being and resilience by undertaking specific analysis of data collected as part of wider research with young people (n?=?97). The study utilised participatory qualitative methods with a cross sectional design generating data via a focus group with trans youth (n?=?5), followed by thematic analysis. Findings suggest that both individual and collective capacities or resources enable and sustain resilience and well-being for trans young people. The adversity trans youth face is present in school, the community and in healthcare, but they are able to find places where they feel safe and connected to others. Practitioners, teachers and school nurses are well positioned to facilitate structural change in alliance with trans youth to promote resilience. Research results were utilised to inform health improvement, commissioning and service delivery.     

Inside the black box: Dimensions of gender,generation and scale in the Australian rural restructuring process

Using a case study of the South Australian farm crisis of the late 1980s and early 1990s, the article seeks to sympathetically engage with Whatmore's [Whatmore, 1991a; Farming Women: Gender, Work and Family Enterprise, Macmillan, London; Whatmore, 1991b. Journal of Rural Studies, 7(1/2), 71–76] feminist reconstruction of simple commodity production (SCP). It explores the extent to which Whatmore's reformulation of the SCP concept offers a scale- and agency-sensitive framework through which contemporary processes of agrarian change, including changing gender roles in many facets of rural and farming life, can be seen. Using Whatmore's adaptation of Connell's (Connell, 1987, Gender and Power: Society, The Person and Sexual Politics, Allen and Unwin, Sydney) ‘gender order’ and ‘gender regime’ to examine the survival strategies of Kangaroo Island farm families from 1984 to 1993, the article reveals that while Island farm women have played fundamental and diverse roles in the defence of the family farm and the farm family through their on- and off-farm and household labour, farm men's roles have changed little. Nevertheless, the article does find that the established gender order is undergoing gradual and uneven change as a familial ideology - where the maintenance of family living standards is considered more important than the preservation of the family's ties with the land - assumes importance in some young families' adjustment responses. In summary, the article finds that Whatmore's ‘domestic political economy’ provides an important advance in understanding how farm families, and individual farm women and men, negotiate global, national, regional and local pressures for economic and social change.     

Making activism a participatory,inclusive and developmental process: a research programme involving mental health service users

Abstract

Understanding real-world experiences and issues is a priority for research funders, yet there are challenges in directly engaging with people for evaluation and investigation of the professional services they receive. Much professional work takes place within institutional restrictions, arising from legislation, policy and local practices. Collaborative research is therefore complex but relevant for improving services. This research programme started in 2002 with focus group research, led by occupational therapists based in a local National Health Service trust and a university, followed by eight further projects including a Photovoice project. This programme and our perspectives from reflections suggest we do not always know who we are, what we want or who cares about research outcomes, but it is important to embrace the potential of activism, to energise and focus people for positive action, wherever they are based.     

Safety segregation: The importance of gender, race, and ethnicity on workplace risk

Using micro data of the Bureau of Labor Statistics we examine the extent and the causes of workplace risk inequality in the United States. Far more men than women and far more blacks and Hispanics than whites are killed or injured at work. Occupational differences between men and women and among the races explain most, but not all, of the workplace risk inequality in the United States. After controlling for occupation, men experience twice as many workplace fatalities as women but fewer nonfatal injuries, while black and Hispanic males experience slightly more workplace fatalities than white males but fewer nonfatal workplace injuries. We find little evidence men choose higher risk jobs and women lower risk jobs because of differences in economic circumstances or risk preferences. But economic and taste factors explain large fractions of the fatal and the nonfatal injury rate differences by race/ethnicity. Workplace risk inequality among the races primarily reflects differences in educational attainment.     

Perspectives on ethnicity,gender and race and their empirical referents: a four-sided paradigm and critical review

Based on a sample of general textbooks in sociology, this article proposes a heuristic, four-sided paradigm of the extant literature on ethnicity, gender and race and highlights their empirical referents: (1) order–integrative, which emphasizes the progressive adaptation of ethnic and racial groups to a dominant, Anglo-Saxonic, Eurocentric culture; (2) pluralist–multiculturalist, which emphasizes markers of social differentiation between ethnic and racial groups that are compatible with social diversity; (3) power–conflict–stratification, which frames successive generations of minority ethnics in contentious power relations amongst themselves relative to the perceived or actual mainstream white powerbrokers in society; and (4) gender–feminist, which critically analyses the white, male, heterosexual bias and hegemony built into the structures and practices of social institutions and social discourse. The paper concludes by suggesting further research on cross-national perspectives as developed countries become more diverse and, as a result, more culturally divisive.     

Between butch/femme: On the performance of race,gender, and sexuality in a YouTube web series

Drawing on a legacy of Black television and film production, Black web series remediate earlier media forms in order to usher in a twenty-first-century revival of indie Black cultural production. Specifically, video sharing and social media platforms operate as a sphere in which content creators and users are afforded unique opportunities to engage with video content and each other on a variety of levels. Focusing on the YouTube media sphere, one can also observe the myriad ways in which the performance of race, gender, and sexuality influences the types of discourse that circulate within these sites. In watching and analyzing Black queer web series on YouTube, I examine how the performance of gender and sexuality by Black queer women within and outside of web series are policed and protected by both community insiders and outsiders. Utilizing an ethnographic framework, which includes a critical discourse analysis of the YouTube comments for the series Between Women, as well as a textual analysis of series content, this project draws conclusions about the role that the politics of pleasure, performance, and the public sphere play in the recognition and/or refusal of queer sexuality within Black communities.     

Pushing back the margins: power,identity and marginalia in survey research with young people

The study of marginalia has not been widely discussed in social sciences research and occupies a marginal space in terms of methodological legitimacy. We highlight the value of paying attention to the ways in which participants speak back to the researcher. This paper draws on marginalia found in surveys written or drawn by young people in classrooms across South Wales, demonstrating how various notes and marks made spontaneously by participants can tell us something important and worthwhile about how young people engage with research. We position marginalia as a manifestation of complex power dynamics in the research process that illuminate participants’ negotiation of complex and multiple subjectivities in the literal margins and between the lines of the survey pages. Whilst the sensitive and rigorous analysis of marginalia is fraught with ethical and methodological challenges, we argue that paying closer attention to marginalia presents an opportunity for deeper engagement with participants when undertaking survey research.     

Why emotion work matters: sex,gender, and the division of household labor

Attempting to explain why biological sex remains the primary predictor of household labor allocation, gender theorists have suggested that husbands and wives perform family work in ways that facilitate culturally appropriate constructions of gender. To date, however, researchers have yet to consider the theoretical and empirical significance of emotion work in their studies of the gendered division of household labor. Using survey data from 335 employed, married parents, I examine the relative influence of economic resources, time constraints, gender ideology, sex, and gender on the performance of housework, child care, and emotion work. Results indicate that gender construction, not sex, predicts the performance of emotion work and that this performance reflects a key difference in men's and women's gendered constructions of self.     

Promoting the mental well-being of older people from black and minority ethnic communities in United Kingdom rural areas: Findings from an interview study

Drawing from 81 interviews with practitioners in social care and housing with care services in the United Kingdom, this paper explores practice issues in rural areas when supporting the mental health and well-being of older people from Black and minority ethnic groups. The paper begins with a review of the literature which provides evidence that BME older people are likely to be increasingly part of the populations of rural areas. Next it presents interview data revealing that while practitioners are aware of such demographic changes in general terms; some feel that they lack training and skills in adapting their professional practice to support all older people. Others express feelings of professional isolation in seeking to support older people from minority groups and are concerned that older people from minority groups may be at risk of isolation and loneliness. The paper concludes with a discussion of the study's implications for rural practice, policy and research.     

What a white shame: race, gender, and white shame in the relational economy of primary health care organizations in England

This paper considers the relationship between white shame in contemporary UK health care contexts and historically idealized forms of white pride derived from nineteenth-century British colonialism. It uses excerpts from qualitative interview material to highlight the contemporary figures of the “white worried man” and the “white women savior” and the relationship between them. Through this, it explores how shifts from white pride to white shame reflect shifts in the focus of whiteness away from civilizing the racialized Other to civilizing the white self. Through this analysis, it further complicates shame theory arguing for an understanding of [white] shame as constituted through a relational economy, differentiated through class and gender as well as race.     

Child welfare workers go to court: The impact of race, gender, and education on the comfort with legal issues

This study examines perceptions of 425 public and private agency child welfare workers from one state in terms of their level of comfort with the court work components of their jobs, at baseline, which is after their initial training but before beginning their child welfare work, and again after six months on the job. Bivariate and multivariate analyses were undertaken. Bivariate analyses reveal that being older and male were associated with higher court comfort levels at baseline and at six months. Being white was associated with higher comfort levels at six months. In addition, private agency workers were more comfortable with court at baseline and six months. Workers with a social work education had higher court comfort levels at baseline and six months, when compared to those with criminal justice or other education. In the multivariate analysis, there were no significant differences in level of comfort with court work based upon worker characteristics at baseline. However, at six months on the job, predictors of comfort with child welfare work were being white and being male; having a social work education approached statistical significance. When change in comfort level was examined, the only significant positive predictor of court comfort was having a social work education.     

Examining the impact of gender, race/ethnicity, and family factors on mental health issues in a sample of court-involved youth

Faced with anywhere between one half and two thirds of its youth having a diagnosable mental illness, the identification and treatment of mental health concerns is a critically important endeavor for professionals working with youth who have contact with the juvenile justice system. In addition, the literature suggests that factors related to both the family and to the gender of the adolescent must be incorporated into any approach to assessment and intervention within this special population. Further, prior work that has documented the interaction of gender and family issues with adolescent race/ethnicity warrants further empirical attention, as does the intermediary role that the family may play in the development of both internalizing and externalizing behaviors. The present study extends this literature by examining factors related to gender, race/ethnicity, family factors, and mental health issues in a sample of 2,549 Caucasian and African American youth coming to the attention of juvenile courts. Multivariate analysis of variance results indicated significant main effects for gender and race/ethnicity, as well as a significant gender x race/ethnicity interaction for the family and externalizing variables. A multiple group structural equation modeling procedure was employed in order to test the hypothesis that family environment mediates the relationship between gender and mental health problems, as well as to test for potential differences in these relationships as a function of race/ethnicity. Results indicated support for the mediation model in the sample of African American youth but not in the sample of Caucasian youth.