The last outing for the Growing Up with Cancer project

In July, my Growing Up with Cancer (GUWC) project colleague Peter and I attend the 8th International Conference on Teenage and Young Adult Cancer Medicine. It was held at the Royal Society of Medicine in London and what a glorious venue for this project’s last outing!

The conference organisers staged a full exhibition of the Growing Up with Cancer self-portraits (experience all the artworks here) and featured the project in the conference programme.

GUWC self-portraits on show at the International Conference on Cancer in Teenagers and Young Adults
GUWC self-portraits on show at the International Conference on Cancer in Teenagers and Young Adults
GUWC self-portraits on show at the International Conference on Cancer in Teenagers and Young Adults
GUWC self-portraits on show at the International Conference on Cancer in Teenagers and Young Adults

We also presented three conference posters on the research process and the project findings. (If you’d like to quote or use these posters – please acknowledge them correctly)

What healthy young people think about youth cancer – Mooney-Somers, J & Lewis, P. “Little Annabel Harvey and her fight with cancer”: healthy young people’s representations of youth cancer. 8th International conference on teenage and young adult cancer medicine, London July 2104

Using creative methods in research with young people – Mooney-Somers, J & Smith, K. Beyond the Illustration of Research Data: Using professionally facilitated image making techniques to enable participants to describe, enhance and extend data originally captured using traditional text-based methods of research. 8th International conference on teenage and young adult cancer medicine, London July 2104 

Telling friends and partners that you had cancer – Lewis, P & Mooney-Somers, J. Becoming a survivor – young people disclosing cancer to new acquaintances and romantic partners. 8th International conference on teenage and young adult cancer medicine, London July 2104

 

2nd Australian Forum on Sexuality, Education & Health

I had the pleasure of attending the second meeting of the Australia Forum on Sexuality, Education and Health at UNSW today. It was organised by Peter Aggleton at the National Centre in HIV and Social Research. The forum was a series of short provocations from 4 people on the theme Learning about sex—what, when, where and how? It was a great spread of speakers – an academic, a clinician form Family Planning, a youth worker from Twenty10, and a high school principal.

I experimented with live tweeting for the first time and then with storify to bring together the (admittedly not very extensive) twitter conversation… you can read it here:

[View the story “Aust Forum on Sexuality, Education & Health ” on Storify]

Condom negotiation and young women in Cambodia

A new paper from the research project I am involved with in Cambodia about young female sex workers and HIV. Drawing on the qualitative data from young women sex workers we’ve explored condom use. Originally a paper broadly about the determinants of condom use (incl alcohol and drug use by women and their clients, violence) it now focuses on the use of condoms across the relationships that young women are involved in – commercial, not commercial and those of ambiguous status.  We look at how the young women thought about their relationships – conceptualizing them as risky or not – and how that shaped their desire to use condoms as well as the strategies they employed to use them (or not).

Email me for a copy of the paper or find it here: Maher L, Mooney-Somers J, Phlong P, Couture MC, Phal S, Bates A, Sansothy N, Page K. (2013) Condom negotiation across different relationship types by young women engaged in sex work in Phnom Penh, Cambodia. Global Public Health [Epub ahead of print]

Abstract: Cambodia’s 100% Condom Use Programme is credited with an increase in
consistent condom use in commercial sexual interactions and a decrease in HIV
prevalence among female sex workers (FSWs). There has been little improvement
in condom use between FSWs and non-commercial partners, prompting calls for
more innovative approaches to increasing condom use in these relationships. To
understand why condoms are used or not used in sexual interactions involving
FSWs, we examined condom negotiation across different types of relationships.
We conducted 33 in-depth interviews with young (15 to 29 years) women engaged
in sex work in Phnom Penh. There was an important interplay between the
meanings of condom use and the meanings of women’s relationships. Commercial
relationships were characterised as inherently risky and necessitated condom use.
Despite a similar lack of sexual fidelity, sweetheart relationships were rarely
construed as risky and typically did not involve condom use. Husbands and wives
constructed their sexual interactions with each other differently, making agreement
on condom use difficult. The lack of improvement in condom use in FSWs’
non-commercial sexual relationships needs to be understood in relation to both
sex work and the broader Cambodian sexual culture within which these
relationships are embedded.

Growing Up with Cancer self-portrait exhibition at Federation Square

This week the Growing Up with Cancer self-portraits are spending a week at Federation Square, Melbourne. This amazing venue gave the exhibition a whole new audience as school groups, tourists and lunching office workers made their way through the Fed Sq complex or to the Ian Potter Museum.

Two of the artist-participants (with proud mums and dads and kids) attended the Tuesday launch. We heard speeches from Michael Carr-Gregg (adolescent psychologist and long-time CanTeen supporter), Lachlan Korvin (CanTeen patient member and board member), Melia Bartholomeusz (GUWC participant and artist) and Peter Lewis (on behalf of GUWC team).

   GUWC at Fed Sq   GUWC at Fed Sq    GUWC at Fed SqGUWC at Fed Sq

The exhibition is now at the Peter MacCallum Cancer Centre (in time for the “Bridging the Gap: Meeting the needs of adolescents and young adults (AYA) wherever they receive Treatment” conference). It will be back in Sydney in May for a month at the Downing Centre.

An electronic copy of the exhibition catalogue is available here; or email me for a printed version.

Special thanks to Sandy Bliim who flew back from Nauru to set things up!

 

Experimenting with creative research methods for young people

Yesterday we made our last trip out west to run focus groups with healthy school kids about cancer and young people (for the Growing Up with Cancer project). We asked them to work in small groups to develop and perform a 3 minute current affairs/news style presentation about a young person their age that has cancer. Over 3 focus groups with high school drama students we saw lots of performances, ranging from the expected (sad) to the wild (cancer jokes!). Our motivation was to use methods that would break open the usual victims and heroes discourses about cancer in young people. And it worked. An awesome data generation technique, an enthusiastic group of students and a supportive school and teacher.

Get inspired to think more creatively about methods of data generation here Art Lab and David Gauntlett

Young Women’s Health Study Cambodia article

Our latest paper from the Young Women’s Health Study (YHWS) in Cambodia, has just been accepted by the Harm Reduction Journal. It’s open access so the provisional PDf is up – just click on the paper title.

Maher, L, Mooney-Somers, J, Phlong, P,  Couture, MC, Stein, E, Evans, J, Cockroft, Sansothy, NC, Nemoto T, and Page, K.(2011) Selling sex in unsafe spaces: Sex work risk environments in Phnom Penh, Cambodia. Harm Reduction Journal.

Abstract:
Background: The risk environment framework provides a valuable but under-utilised heuristic for understanding environmental vulnerability to HIV and other sexually transmitted infections among female sex workers. Brothels have been shown to be safer than street-based sex work, with higher rates of consistent condom use and lower HIV prevalence. While entertainment venues are also assumed to be safer than street-based sex work, few studies have examined environmental influences on vulnerability to HIV in this context.

Methods: As part of the Young Women’s Health Study, a prospective observational study of young women (15-29 years) engaged in sex work in Phnom Penh, we conducted in-depth interviews (n=33) to explore vulnerability to HIV/STI and related harms. Interviews were conducted in Khmer by trained interviewers, transcribed and translated into English and analysed for thematic content.

Results: The intensification of anti-prostitution and anti-trafficking efforts in Cambodia has increased the number of women working in entertainment venues and on the street. Our results confirm that street-based sex work places women at risk of HIV/STI infection and identify significant environmental risks related to entertainment-based sex work, including limited access to condoms and alcohol-related intoxication. Our data also indicate that exposure to violence and interactions with the police are mediated by the settings in which sex is sold. In particular, transacting sex in environments such as guest houses where there is little or no oversight in the form of peer or managerial support or protection, may increase vulnerability to HIV/STI.

Conclusions: Entertainment venues may also provide a high risk environment for sex work. Our results indicate that strategies designed to address HIV prevention among brothel-based FSWs in Cambodia have not translated well to street and entertainment-based sex work venues in which increasing numbers of women are working. There is an urgent need for targeted interventions, supported by legal and policy reforms, designed to reduce the environmental risks of sex work in these settings.  Future research should seek to investigate sex work venues as risk environments, explore the role of different business models in mediating these environments, and identify and quantify exposure to risk in different occupational settings.

GUWC presents at Youth Health 2011

The Growing Up with Cancer research project had a few appearances at the wonderful Australian Adolescent Health conference (aka Youth Health: It’s totally important).

My colleague Peter Lewis spoke in the youth cancer session about young cancer survivors making meaning and finding benefit from their cancer experiences.

Making meaning and finding benefit: Young people’s reflections on survival after cancer

Lewis, P, Mooney-Somers, J, Jordens, CFC, and Kerridge, I

Qualitative research with adult cancer survivors has reported that survivors engage in activities that are designed to “give something back” to the community or to the health care system that helped them survive. This paper examines whether expressions of indebtedness and/or actions undertaken to “repay” the debt are evident in young people’s accounts of becoming a cancer survivor.

This paper is based on our findings from 47 semi-structured interviews conducted with 27 cancer survivors (16-30 years old) who were diagnosed between 10 and 22 years. Participants described how their experiences gave them special insight and wisdom into problems experienced by their peers and that this motivated them to help others. We will discuss three themes; Cancer as transformation, Accounts of intentions to act as a better person, and Accounts of acting as a better person.

The literature suggests that one way cancer survivors make sense of their experience is to determine how the experience was beneficial for them. We will argue that the ways participants in our study described enacting “being a better person” in their daily lives can be understood as a strategy for disseminating the benefits of the wisdom and insight that they had gained from being treated for cancer. That is, they are engaged in finding benefit rather than repaying a debt as described in adult cancer survivors.

We also had two posters:

Becoming a survivor – young people disclosing cancer to new friends and romantic partners

Lewis, P and Mooney-Somers, J

The Growing up with Cancer study aimed to explore the effects of a cancer diagnosis during adolescence on young people’s developing identity, relationships, agency, and autonomy. This paper focuses on how cancer affected young people’s developing friendships and romantic relationships.

We conducted 47 semi-structured interviews with 27 young people (16 to 29 years) who had been diagnosed with various cancers and haematological malignancies when aged 10 to 22 years. Interview data were analysed using a symbolic interactionist perspective.
Participants described fears around possible consequences of introducing their cancer history into new friendships and particularly for young men, romantic relationships. This contrasted with positive experiences reported by many (especially young women) of establishing new friendships and romantic relationships and implementing successful disclosure strategies.

Disclosing a cancer history in new relationships is an important step in becoming a cancer survivor. In contrast to negotiating a cancer survivor identity with family or existing friends, new friends and romantic partners offer a clean slate where young cancer survivors can decide when and who to tell about their cancer, and experiment with the presentation of a post-cancer self.

Our findings suggest that part of survivorship for young people is working out how cancer contributes to their identity so they can provide an account of themselves. It may be important for young people to have opportunities for disclosure early in their survivorship and discussion with more experienced survivor peers about strategies for positive disclosure outcomes.

Picturing cancer survival: young people’s self portraits of the impact of cancer on growing up

Mooney-Somers, J and Smith, K

The Growing up with Cancer study used multiple methods to explore the effects of a cancer diagnosis during adolescence on young people’s developing identity, relationships, agency, and autonomy. Nineteen young people (16 to 29 years) diagnosed with various cancers and haematological malignancies when aged 10 to 22 years, worked together with a digital media artist to create a self portrait of themselves and their cancer journey. They participated in one or more full day creative workshops and engaged with the artist via telephone, email and online live collaboration software. The period of engagement in creative activities varied from a participation in a single workshop to working with the artist for several months. This process presented an opportunity for young people to reflect on experiences of cancer and growing up.

Nineteen young people produced 21 self portraits using mixed media, graphic, photographic, and musical techniques. The creative process and the resulting self-portraits are far more than simply research data. They standalone as pieces of art to tell a compelling story of the complex and contradictory nature of dealing with a life threatening illness during a time of significant flux, when identity formation is foreground.

We propose to display a suite of five posters (each A0 size) comprising four posters displaying 20 visual self portraits.

Sorry I can’t display the self portraits posters here (yet!).

Young Women’s Health Study Cambodia article

Our paper on the Young Women’s Health Study (YHWS), in Cambodia, has just been accepted by the International Journal of Drug Policy. The qualitative anaysis explores amphetamine-type substance use and vulnerability to HIV/STI among young female sex workers.

Maher, L, Phlong, P, Mooney-Somers, J, Keo, S, Stein, E, Page, K. Amphetamine-type stimulant use and HIV/STI risk behaviour among young female sex workers in Phnom Penh, Cambodia. International Journal of Drug Policy.

“Background: Use of amphetamine-type substances (ATS) has been linked to increased risk of HIV and other sexually transmitted infections (STI) worldwide. In Cambodia, recent ATS use is independently associated with incident STI infection among young female sex workers (FSW). Methods: We conducted 33 in-depth interviews with women (15-29 years old) engaged in sex work to explore ATS use and vulnerability to HIV/STI. Results: Participants reported that ATS, primarily methamphetamine in pill and crystalline forms (yama), were cheap, widely available and commonly used. Yama was described as a “power drug” (thnam kamlang) which enabled women to work long hours and serve more customers. Use of ATS by clients was also common, with some providing drugs for women and/or encouraging their use, often resulting in prolonged sexual activity. Requests for unprotected sex were also more common among intoxicated clients and strategies typically employed to negotiate condom use were less effective. Conclusion: ATS use was highly functional for young women engaged in sex work, facilitating a sense of power and agency and highlighting the occupational significance and normalization of ATS in this setting. This highly gendered dynamic supports the limited but emerging literature on women’s use of ATS, which to date has been heavily focused on men. Results indicate an urgent need to increase awareness of the risks associated with ATS use, to provide women with alternative and sustainable options for income generation, to better regulate the conditions of sex work, and to work with FSWs and their clients to develop and promote culturally appropriate harm reduction interventions.”

Background on the study from the project leaders at the University of California, San Fransisco and the Cambodian research partners, National Centre for HIV, Dermatology and STI (NCHADS).

Other publications from the YWHS
Couture, M.-C., Sansothy, N., Sapphon, V., Phal, S., Sichan, K., Stein, E., et al. (2011). Young Women Engaged in Sex Work in Phnom Penh, Cambodia, Have High Incidence of HIV and Sexually Transmitted Infections, and Amphetamine-Type Stimulant Use: New Challenges to HIV Prevention and Risk.. Sexually Transmitted Diseases, 38(1), 33-39.

Indigenous Resilience article

Our paper on understanding Indigenous young people’s past experiences of sexually transmitted diseases as resilience narratives has just been published by Culture, Health and Sexuality. Here’s the abstract:

“The Indigenous Resilience Project is an Australian community-based participatory research project using qualitative methods to explore young Aboriginal and Torres Strait Islander people’s views of blood-borne viral and sexually transmitted infections (BBV/STI) affecting their communities. In this paper we present an analysis of narratives from young people who had a previous BBV/STI diagnosis to explore how they actively negotiate the experience of BBV/STI infection to construct a classic resilience narrative. We examine two overarching themes: first, the context of infection and diagnosis, including ignorance of STI/BBV prior to infection/diagnosis and, second, turning points and transformations in the form of insights, behaviours, roles and agency. Responding to critical writing on resilience theory, we argue that providing situated accounts of adversity from the perspectives of young Indigenous people prioritises their subjective understandings and challenges normative definitions of resilience.”

Mooney-Somers, J., Olsen, A., Erick, W., Scott, R., Akee, A., Kaldor, J., & Maher, L. (on behalf of the Indigenous Resiliency Project). (2010) Learning from the past: Indigenous young people’s accounts of BBV/STI infection as resilience narratives. Culture, Health & Sexuality, 13(2): 173-186.

Our conference presentation at Making Sense of: Health, Illness & Disease, based on the article, will appear in the conference eBook shortly.

Growing Up with Cancer Melbourne

I’m in Melbourne tomorrow with the Growing Up with Cancer team to run a self portrait workshop at the CanTeen offices. We have 8 young people who have had a cancer diagnosis coming along to work with our artist (Kris Smith) to create a self portrait. The documentary team (Virus Media) are coming along to film the workshop and chat with some of the young people about their experiences (check out the promo video for the documentary below)