Life with HIV and AIDS in the era of effective treatments : 'it's not just about living longer!'

This paper explores the lived experiences of people with Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) in the era of effective treatments. Informed by post-structuralist epistemology, the aim of this paper is to interrogate the concept of quality of life within the context of living with HIV as a treatable, manageable and chronic disease, by critiquing the utility of the concept as a gauge by which the success of treatment intervention is assessed. In doing so, it draws on a theoretical analysis of the quality of life concept, and examines the complexities and difficulties embedded in treatment use, which in turn facilitates an exploration of the disparity between the ways that the healthy body is positioned within medical discourse and the subjectively constituted notion of well-being. A case study of a person with HIV will be presented to underscore the importance of quality of life as subjectively constituted rather than as a clinical outcome

How do subjectively-constructed meanings ascribed to anti-HIV treatments affect treatment-adherent practice?

Anti-HIV treatment-adherent practice is a significant issue in HIV medical discourses on effective disease treatment and management. Findings from research studies into treatment (non)adherence have positioned the act as a medical issue that could be remedied by behavioral strategies. The present study, conducted in Sydney, Australia, aims to examine treatment-(non)adherent practice as a subjective expression of meanings ascribed to treatments by employing a narrative analytical approach informed by poststructuralist epistemology. The findings indicate that people with HIV negotiate and position treatments in particular ways that lead to multiple and varied understanding of treatments. The ways treatments are positioned in their everyday lives suggest that meanings ascribed to treatments impact on the way individuals negotiate demands embedded in the medically-constructed practice of adherence

Bereaved informal cancer carers making sense of the palliative care experiences at home

This qualitative study explored the positive meanings constructed and ascribed to the experience of providing palliative care at home by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. Twenty-two bereaved cancer carers, living in New South Wales (NSW), Australia, were interviewed as part of a larger mixed-method study examining the experience of informal cancer care. Participants were recruited through cancer support groups and cancer clinics, and through the Cancer Council NSW. Accounts of positive aspects of palliative caring were analysed using a thematic analytical approach from a constructionist perspective. The findings indicated that these bereaved carers gave accounts that accentuated the benefit and satisfaction derived from providing direct palliative care at home, which enabled them to construct positive meanings associated with their participation in the dying process, and as a result to ascribe subjectively meaningful interpretations to their loved ones' death and their sense of loss. This included a sense of reward for doing something good, meeting the expressed needs of the patient, continuing with normal life as much as possible, improving the conditions of the relationship and meeting cultural expectations of the right thing to do. Being present at the point of death was positioned as rewarding because it facilitated the process of saying goodbye, fostered inclusion of others, provided closure and was a spiritual experience. These findings suggest that there are positive and rewarding aspects associated with providing informal cancer care in a palliative context, and these aspects were pertinent and meaningful for carers in their endeavours to reconcile the difficulties and loss they experienced. This has implications for the prevention and amelioration of distress experienced by informal cancer carers, and suggests that future research should not ignore the positive aspects of providing palliative care

Healthy Active Australia Community and Schools Grants Program - Panther Bytes: Final Evaluation Report

The Panther Bytes program was designed as a support program for promoting the importance of healthy diets and regular exercises in primary school children. The program focuses on diet, nutrition and physical activity as ways to redress poor eating habits and low exercise levels by utilising modern technology and interactions with elite athletes. The program is an initiative of the Panthers on the Prowl Community Development Foundation, which began as a concept in 2000 with support from the Panthers Board of Directors and the Panthers Rugby Leagues Club. This report provides the results of an independent evaluation of the Panther Bytes program conducted by the University of Western Sydney. The evaluation is based on findings from online questionnaires designed specifically for students who participated in the program, issues identified from focus groups with students, parents of students and teachers of students who participated in the program, and information obtained by the Panther Bytes program staff. In sum, evaluation outcomes are based on data from the following sources: 2 cohorts of students who participated in the program in 2009; 499 student online questionnaire responses (173 responses at the start of the program and 326 responses at the completion of the program); 3 focus groups in 2009 with a total of 13 students, 5 parents, 4 teachers and 1 school principal; Australian Fitness Education Award (AFEA) data collected by the Panther Bytes staff; a teacher evaluation questionnaire (‘Active Lifestyles – Panther Bytes Program’) designed and administered by Panther Bytes staff

Counseling support for the forgotten transgender community

The needs of people with nonconforming gender behavior are not homogeneous, for people who self-identify as transgender are not and should not be considered the same as individuals who self-identity as transsexual. Limited counseling resources are available for clinicians working with individuals who self-identify as transgender but have no desire to proceed to sexual reassignment surgery (SRS). Though it appears many of the recommendations for transsexuals are relevant for the broader range of transgender individuals, significant differences exist between them, warranting further investigation. This article presents a summary of approaches for gender-variant clients not matching the transsexual paradigm

Playing for Success Program: "Tackle It Now Project": Final Evaluation Report 2007-2009

The Playing for Success – Tackle it Now program was designed as a support program for children at risk of developing antisocial behaviour. It is a preventative program based on building positive core values and establishing a climate of change within the lives of targeted students and their families. The program is an initiative of the Panthers on the Prowl Community Development Foundation, which began as a concept in 2000 with support from the Panthers Board of Directors and the Panthers Rugby Leagues Club

A qualitative analysis of changes in relationship dynamics and roles between people with cancer and their primary informal carer

It is widely accepted that cancer is an intersubjective experience that impacts upon the psychological well-being of people with cancer and informal carers, as well as on couple relationships. This qualitative study examined the nature and consequences of cancer on the relationship between informal carers and the person with cancer, from the perspective of Australian cancer carers. Sixty-two carers (42 women and 20 men), across a range of cancer types, stages and relationship dyads took part in semi-structured interviews. Participants reported that cancer had precipitated a change in roles and in the dynamics of the relationship, including having to take on quasi-medical tasks and decisions, neglecting self and other relationships, changes to the emotions or personality of the person with cancer, changed patterns of communication, and changes to sexuality and intimacy. The impact of the changed relationship included sadness, anger and frustration, as well as feelings of love and being closer together, resulting in relationship enhancement. Women were more likely to report changes in the person with cancer and to mourn the previous relationship, while more men reported relationship enhancement

The gendered construction and experience of difficulties and rewards in cancer care

Women cancer carers have consistently been found to report higher levels of distress than men carers. However, there is little understanding of the mechanisms underlying these gender differences in distress, and a neglect of rewarding aspects of care. We conducted in-depth semistructured interviews with 53 informal cancer carers, 34 women and 19 men, to examine difficult and rewarding aspects of cancer care. Thematic analysis was used to analyze the transcripts. Women were more likely to report negative changes in the relationship with the person with cancer; neglect of self, social isolation, and physical health consequences; anxiety; personal strength and growth; and to position caring as a privilege. Men were more likely to report increased relational closeness with the person with cancer, and the burden of additional responsibilities within the home as a difficult aspect of caring. We interpret these findings in relation to a social constructionist analysis of gender roles

Renegotiating sex and intimacy after cancer : resisting the coital imperative

Background: Previous research on sex and intimacy in the context of cancer has focused on documenting sexual changes and difficulties, primarily focusing on heterosexual individuals who have sexual or reproductive cancers. Analyses of sexual renegotiation and the social construction of sex are largely absent from the research agenda. Objective: The objective of this study was to explore renegotiation of sex in individuals with cancer, and in partners, across a broad range of cancer types and relational contexts. Methods: Semi-structured interviews were conducted with 44 people with cancer (23 women, 21 men) and 35 partners (18 women, 17 men), 86% of whom identified as heterosexual. The data were analyzed with theoretical thematic analysis, from a material-discursive-intrapsychic perspective. Results: Renegotiation of sex or intimacy was reported by 70% of participants, reflected in 3 themes: ‘‘resisting the coital imperative: redefining ‘sex,’’’ ‘‘resisting the coital imperative: embracing intimacy,’’ and ‘‘adopting the coital imperative: refiguring the body through techno-medicine.’’ The importance of relational context was reflected in the theme ‘‘the inter-subjective nature of sexual re-negotiation: relationship context and communication.’’ Conclusions: Whereas previous research has focused on embodied changes associated with sexuality after cancer, or their psychological consequences, the findings of the present study suggest that hegemonic constructions of ‘‘sex,’’ in particular the coital imperative, are central to the experience and negotiation of sex and intimacy after cancer. Implications for Practice: Resistance of the coital imperative should be a fundamental aspect of information and support provided by health professionals who seek to reduce distress associated with sexual changes after cancer

Reproductive and Sexual Health Needs of Culturally and Linguistically Diverse (CALD) Communities in Western Sydney: Pilot Project Report

The World Health Organisation considers reproductive and sexual health to be an important part of “complete physical, mental and social well-being” (World Health Organization Regional Office for the Western Pacific, 2010). In Australia, primary care around reproductive and sexual health is through General Practitioners (GPs) and specialised services such as family planning clinics, sexual health centres and women’s health centres. However, these services are underutilised by culturally and linguistically diverse communities (Georgiadis, 2008; Manderson & Allotey, 2003b), leading to concerns about lack of appropriate information for informed decision-making and low use of preventative measures associated with reproductive and sexual health (Gifford, Bakopanos, Dawson, & Yesilyurt, 1998; McMullin, De Alba, Chávez, & Hubbell, 2005)