Rebecca Gray

'I can't do this, it's too much': building social inclusion in cancer diagnosis and treatment experiences of Aboriginal people, their carers and health workers

ObjectivesSocial inclusion theory has been used to understand how people at the margins of society engage with service provision. The aim of this paper was to explore the cancer care experiences of Aboriginal people in NSW using a social inclusion lens.MethodsQualitative interviews were conducted with 22 Aboriginal people with cancer, 18 carers of Aboriginal people and 16 health care workers.ResultsParticipants’ narratives described experiences that could be considered to be situational factors in social inclusion such as difficulties in managing the practical and logistic aspects of accessing cancer care. Three factors were identified as processes of social inclusion that tied these experiences together including socio-economic security, trust (or mistrust arising from historic and current experience of discrimination), and difficulties in knowing the system of cancer treatment.ConclusionsThese three factors may act as barriers to the social inclusion of Aboriginal people in cancer treatment. This challenges the cancer care system to work to acknowledge these forces and create practical and symbolic responses, in partnership with Aboriginal people, communities and health organisations.

Rethinking safety and fidelity: The role of love and intimacy in Hepatitis C transmission and prevention

Abstract Hepatitis C (HCV) is a disease of the liver with a range of potentially debilitating symptoms, the severity of which differ from person to person. HCV is a major public health challenge. Globally an estimated one in 12 persons is affected by the virus, and substantial new transmissions occur each year. The vast majority of new transmissions occur among people who inject drugs, particularly through practices such as sharing of needles, syringes and other injecting equipment. Behavioural surveillance data suggest that the majority of equipment sharing occurs between intimate partners. Despite this, very little research has focussed on intimate partnerships as a site of hepatitis C transmission or prevention. This is in part because people who inject drugs are conventionally represented as lacking capacity for romantic love and intimacy; also, drug ‘addiction’ is produced as the antithesis of voluntarity, autonomy and authenticity, all of which feature strongly in Western understandings of romantic love. This study aims to fill existing gaps in the literature about the relationship between romantic love and injecting drug use (IDU) and to explore injecting drug practices among partners in intimate relationships. Fifteen people who inject drugs, currently in long-term heterosexual relationships, were recruited for in-depth interviews, which were recorded, transcribed verbatim and analysed thematically. The main findings of this study are that romantic love and intimacy figure prominently in the lives of people who inject drugs, and that romantic notions such as commitment, trust, care and support shape how individuals who inject drugs talk about serostatus with their partners and how they account for injecting practices. Moreover, injecting practices are co-produced within intimate relationships, shaped by perceptions of risk within and outside the relationship, ideas of intimacy, and the specific levels of skill and expertise within these relationships. These findings have important implications for harm reduction strategies, which, we suggest, have largely failed to take into account the intimate relationship as a source of practice. We conclude with suggestions for future work in this area.

Health literacy in relation to cancer: addressing the silence about and absence of cancer discussion among Aboriginal people, communities and health services

Cancer outcomes for Aboriginal Australians are poorer when compared with cancer outcomes for non-Aboriginal Australians despite overall improvements in cancer outcomes. One concept used to examine inequities in health outcomes between groups is health literacy. Recent research and advocacy have pointed to the importance of increasing health literacy as it relates to cancer among Aboriginal people. This study examined individual, social and cultural aspects of health literacy relevant to cancer among Aboriginal patients, carers and their health workers in New South Wales. Qualitative interviews were conducted with 22 Aboriginal people who had been diagnosed with cancer, 18 people who were carers of Aboriginal people with cancer and 16 healthcare workers (eight Aboriginal and eight non-Aboriginal health workers). Awareness, knowledge and experience of cancer were largely absent from peoples lives and experiences until they were diagnosed, illustrating the need for cancer awareness raising among Aboriginal people, communities and services. Some beliefs about cancer (particularly equating cancer to death) differed from mainstream Western biomedical views of the body and cancer and this served to silence discussion on cancer. As such, these beliefs can be used to inform communication and help illuminate how beliefs can shape responses to cancer. Participants proposed some practical strategies that could work to fill absences in knowledge and build on beliefs about cancer. These results were characterised by a silence about cancer, an absence of discussions of cancer and an acknowledgement of an already full health agenda for Aboriginal communities. To promote health literacy in relation to cancer would require a multi-layered programme of work involving grass-roots community education, workers and Board members of Aboriginal community-controlled health organisations and speciality cancer services, with a particular focus on programmes to bridge community-based primary care and tertiary level cancer services.

One size fits all? The discursive framing of cultural difference in health professional accounts of providing cancer care to Aboriginal people

Objectives. Cancer is the second biggest killer of Aboriginal Australians. For some cancers, the mortality rate is more than three times higher in Aboriginal people than for non-Aboriginal people. The Aboriginal Patterns of Cancer Care Study explored barriers to and facilitators of cancer diagnosis and treatment among Aboriginal and Torres Strait Islander people in New South Wales. Design. Our team – which includes both Aboriginal and non-Aboriginal researchers – conducted in-depth interviews between 2009 and 2010 with Aboriginal people with cancer, their carers and health professionals who care for them. In this paper, we identify recurrent patterns of ‘discursive framing’ in the 16 interviews with health care professionals. We are particularly interested in how these frames assisted participants in constructing a professional position on what ‘cultural difference’ means for the design and delivery of cancer care services to Aboriginal people. Results. Despite geographical, organisational, disciplinary and cultural diversity, these interview participants consistently drew upon six discursive frames, which we have interpreted as either eliding a discussion of difference (‘everyone is the same’ and ‘everyone is different’) or facilitating that discussion (‘different priorities,’ ‘different practices’ and ‘making difference safe’). An additional strategy appeared to actively resist either of these positions but then tended to ultimately prioritise the eliding frames. Conclusions. While none of our participants were dismissive of the idea that cultural identity might matter to Aboriginal people, their reliance upon familiar narratives about what that means for cancer care services has the potential to both symbolically and practically exclude the voices of a group of people who may already feel disenfranchised from the mainstream health care system. Critically unpacking the ‘taken for granted’ assumptions behind how health care professionals make sense of cultural difference can enrich our understanding of and response to the care needs of indigenous people affected by cancer.

Multiple stigmas, shame and historical trauma compound the experience of Aboriginal Australians living with hepatitis C

ABSTRACT Hepatitis C (HCV) is a stigmatised disease due, in part, to an association with injecting drug use. Aboriginal Australians, a stigmatised group, are over-represented in patterns of HCV infections. We examined the experience of Aboriginal Australians living with HCV using qualitative in-depth interviews, paying particular attention to instances where multiple stigma mechanisms (relating to HCV, injecting drug use and Aboriginal identity) overlapped. Stigma held a central role in the experience of most of the 39 participants with reports of exclusion and alienation from families and communities. HCV-related stigma was accompanied by the notion of ‘shame’ which holds deep cultural significance for Aboriginal people. Participants’ accounts revealed overlapping stigma in their perception that others ‘automatically’ expect Aboriginal people to have a stigmatised disease such as HCV. HCV as a contemporary expression of colonisation was also woven into accounts of HCV-related stigma. Interventions to reduce HCV stigma should be specifically designed for minority populations to account for multiple, overlapping sources of stigma.

Peer Discussion and Client Motivation in Men's Domestic Violence Programs: An Australian Qualitative Interview Study

Abstract Relationships Australia NSW and Baptist Community Services NSW & ACT, through its BCS LifeCare Counselling & Family Services program, collaborated to explore client perceptions of mens domestic violence programs. Recruitment targeted male clients and their female partners, across six locations in New South Wales, Australia. In total, 63 qualitative interviews were gathered from 28 participants, between 2007 and 2009, at program intake, program completion and 6-month follow-up. The focus of this article is on the 20 male interviews conducted with 14 participants at program completion (10) and at 6-month follow-up (10). Recurring themes from these interviews indicate the potentially disruptive effect of client dialogue on group dynamics. While positive group discussion has the potential to enhance client motivation, negative peer discussions, external to group sessions, can diminish group functioning and client motivation for these participants. The paradoxical nature of the group-intervention experience is explored in light of these accounts. Suggestions for mens domestic violence program facilitation and research are outlined.

Taking Responsibility: A Psychological Profile of Men Attending a Domestic Violence Group Work Intervention Program in New South Wales, Australia

Domestic violence is a significant social issue with serious implications for victims, families, and the wider community. The present research seeks to investigate specific characteristics that influence the propensity to behave violently. This first stage of a research-based evaluation identifies key differences between men attending a group work intervention program and the general community in terms of gender equity beliefs, self-esteem, personal mastery, and psychological distress. These findings not only provide valuable information for the provision of intervention services but also form a basis that future research may build on in evaluating the effectiveness of such programs.

How ‘Vulnerable’ young people describe their interactions with police: building positive pathways to drug diversion and treatment in Sydney and Melbourne, Australia

Abstract This article describes findings from an Australian mixed method study, and explores young people’s perceptions of police. We focus on the nature of positive experiences, and the potential for positive encounters to improve outcomes for young offenders affected by problematic alcohol and other drug use. Buber’s concept of dialogical interaction is used to articulate the components of a positive experience and how this increases police legitimacy. In doing so, we demonstrate that, despite negative experiences, young people can be sympathetic to the tensions of modern policing, and can envisage police as positive role models. As such, police can enhance outcomes for ‘vulnerable’ young people through more respectful interactions.

i Had a Little Bit of a Bloke Meltdown…but the Next Day, I Was Up: Understanding Cancer Experiences Among Aboriginal Men.

Background: Although cancer in indigenous populations is receiving increased research attention, there is a gap in understanding the particular experiences of Aboriginal men. Objective: The aim of this study is to integrate a range of primary and secondary accounts of the experiences of Aboriginal men in engaging with a cancer diagnosis and treatment in Australia. Methods: Secondary analysis of qualitative interviews (n = 54) conducted between 2008 and 2011 revealed recurrent themes regarding the cancer experiences of Aboriginal men in a subset of participant interviews (n = 23). The analysis reports themes that spanned the accounts of Aboriginal men with cancer (n = 6) and those of their carers (n = 12) and clinicians (n = 5). Results: Recurrent beliefs about the cancer experiences of Aboriginal men included that they “avoid seeking help” for health matters, including cancer symptoms, and to “get on with it,” “not talk about it,” and “manage without fuss” after a cancer diagnosis. Although some men described having to “accept vulnerability,” emphasis was placed on appreciating men’s desire to “protect cultural roles” and “connect with family and culture” throughout care and treatment, including through humor. Conclusions: Men’s accounts of the experiences of cancer diagnosis and care reveal more than simply individual challenge, extending to encompass the very real social and economic implications of illness and vulnerability for Aboriginal men today. Implications for Practice: Aboriginal men could be better engaged with cancer diagnosis and treatment if greater attention was paid to recognizing preferred approaches, including pragmatism and humor, and supporting connections to family and culture throughout the cancer journey.

'Makes you wanna do treatment': benefits of a hepatitis C specialist clinic to clients in Christchurch, New Zealand.

People with hepatitis C virus (HCV) are a marginalised population that may experience discrimination in everyday contexts, including health-care, due to the association of HCV with injecting drug use. Stigma and discrimination are known to have a range of negative effects on people with HCV, including diminished quality of life and avoidance of health-care. The Hepatitis C Community Clinic is an integrated care service established in 2008 in Christchurch, New Zealand to provide alternative access to health-care that is non-judgemental and supportive. As an integrated care service, the clinic aims to improve health outcomes and quality of life through a holistic approach to health-care for people with HCV and people who inject drugs. This qualitative study forms part of a broader mixed-methods evaluation of the clinic, and aims to assess the role of the clinic in improving health outcomes, knowledge, lifestyle practices and psychosocial functioning of the target population. Interviews were conducted with 24 health professionals and 24 clients of the clinic between April and November 2010. Findings illustrate that the clinic is a novel model of care that is effective in accessing a hard-to-reach and marginalised population in part due to the non-judgemental, caring and supportive environment that engenders trust with clients. Based on participant reports, the clinic assists clients in managing their HCV and other health concerns and in increasing their readiness for HCV treatment. Given the benefits of this community clinic to clients, it is proposed that future research investigate the feasibility and benefits of administering HCV treatment through community-based integrated care networks.