Working with peer/community researchers in qualitative research

Anna Olsen and I have a book chapter in the new SAGE Handbook of Qualitative Research Ethics. We draw on our experiences as university researchers using participatory research (PR) to work with community researchers in the field of sexual health to explore the specific ethical issues faced by PR with community/peer researchers. We highlight two key issues: blurred roles of ‘insiders’ and ‘outsiders’ and challenges to rigour. We use several case studies taken from our work around sexual health (with details significantly changed to ensure the anonymity of the communities and projects involved) or developed for research training, in order to begin to address some of the wonders and hazards of ethical practice in PR. A quick peruse of the Handbook contents list and I can see several chapters that’ll be going on the reading list for my qualitative health research students and HDR candidates. If you want a copy of the chapter, let me know.

 

Why I always get an ISBN for my research reports

Mooney-Somers, J, Erick, W, Brockman, D, Scott, R. & Maher, L (2008). Indigenous Resiliency Project Participatory Action Research Component: A report on the Research Training and Development Workshop, Townsville, February 2008. National Centre in HIV Epidemiology and Clinical Research, The University of New South Wales, Sydney, NSW. ISBN: 978 0 7334 2647 6.

See that bit at the end, that’s my first ISBN. I can’t recall where I got the notion from, and I wonder now at my presumptuousness. I don’t think it was standard practice in my research centre to get ISBNs for research reports. But I had just come out of a horrid job that I’d stayed put in to get publications (it didn’t really work). I was in a new job and determined to get as much on my CV as I could. The first output was a report on a training workshop. I was thoroughly engrossed in the methodology we were using (participatory action research) and genuinely interested in how it worked in practice. So writing about our process was something I was into, but it was also a publication. The ISBN though, that was kind of surprising.

I’m now the proud owner of 7 ISBNs.

For those who don’t know, an ISBN stands for International Standard Book Number. It is a unique code assigned to your ‘book’. It is super easy to get one if you know how and a complete mystery if you don’t (typical university*). You don’t need one; I suspect most reports published by academics don’t have one. Let me tell you why you should use them.

An ISBN “makes your book more discoverable” says the Australian provider of ISBNs, Thorpe-Bowker. Unsurprisingly a unique code means no confusion about which title is your book if it also has its own code attached. Well. I’m not entirely convinced this is a big deal for academics (honestly, Google your intended title to make sure it is unique-ish).

The much more compelling reason?

An ISBN means your book exists, it gets listed in registries. In the case of the report above, I got a call out of the blue from a library network asking if they could buy (buy!) several copies. Seriously, how did they even know it existed? It had an ISBN.

And then there’s this…

Copyright Acknowledgement

And this

doc20150115200039_Page_1

You see an ISBN means your work is published and that makes it subject to legal deposit rules (a quick look at Wikipedia suggests this is an international standard).

Legal Deposit is a requirement under the Copyright Act 1968 for publishers and self publishing authors to deposit a copy of works published in Australia with the National Library and when applicable, the deposit libraries in your home state. Legal Deposit ensures that Australian publications are preserved for use now and in the future. National Library of Australia (for more read this http://www.nsla.org.au/legal-deposit-australasia)

In NSW a publisher (e.g. your university if they secure the ISBN) is required to send copies of published material to The National Library of Australia, The State Library of New South Wales and The NSW Parliamentary Library. And because the publisher of my work is The University of Sydney, I have to send a copy to them as well.

That’s an very easy way to get my work into the Parliamentary library.

A major struggle in one of my research area’s (lesbian, bisexual and queer women’s health) is the persistent charge that there is no evidence base. The charge is wrong; there is considerable evidence of disparities in health outcomes out there, but it is a hard perception to shake. So getting our biennial reports of the longest running (in the world) survey of lesbian, bisexual and queer women’s health on to the shelves of policy makers… That’s a win. You never who might stumble across them.**

*Your institution’s library should be able to help or look for the “Legal Deposit Officer”.

*I know, I know, policy-makers Goggle everything. I put them all online too – the University archive, this blog, and often twitter announcements. I’m all about covering the bases.

Lesbian and bisexual women and Pap smears – some good news but concerns remain

I attended the Australasian Sexual Health conference in Sydney to share our recent analysis of data from SWASH on Pap smear testing rates for lesbian, bisexual and queer (LBQ) women. The work was initiated by a medical student from Scotland, Catriona Douglas, who did an research internship with me earlier  this year. We looked at changes in testing between 2002 and 2012, comparisons between LBQ women and the general population in NSW, and predictors of test attendance among LBQ women in NSW. This is what we found:

Sexual Health SWASH pap smear poster FINAL print

Citation: Douglas C, Deacon R, Mooney-Somers J (2014) Pap smear rates among Australian lesbian and bisexual women: some good news but disparities persist. Poster presented at Australasian Sexual Health Conference, Sydney. Download the poster here.

We’ve just started to get some media interest.

Gay New Network (SX magazine in Sydney)

 

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

 

Thinking about chlamydia management at Australian family planning clinics

Very pleased to be able to share the Chlamydia testing and management – FINAL REPORT. This is the outcome of a project that assessed chlamydia testing, contact management and re-testing practices of clinicians at Australian family planning clinics. The project was funded by a National Health and Medical Research Council (NHMRC) Program Grant, and run by The Kirby Institute, UNSW. But the project could not have happened without the support of the management and senior staff of Family Planning organisations. We used a mixed methods approach – a survey of 168 clinicians (run by Joanne Micallef) and 11 focus groups with 70 clinicians (run by me).

Family planning organisations in Australia are state-based non-government organisations and clinics offering a variety of sexual and reproductive health services. There are 29 family planning clinics located across all Australian states and territories. These clinics have high case loads of young, sexually active women (primarily) and men at risk of chlamydia infection.

We’ve presented some findings at the Sexual Health conference in Darwin last year and we’re working on manuscripts. But here are the headlines:

TESTING

  • Screening for chlamydia was perceived by clinicians as routine and a priority.
  • Chlamydia screening facilitators:
    • high community awareness of chlamydia;
    • communicating to clients that chlamydia testing is normal;
    • good relationship between FPC/clinicians and client;
    • providing easy access to screening; and
    • the ability to offer screening without a physical examination.
  • Evaluating the success of chlamydia screening:
    • clinicians felt confident that chlamydia screening was going well at both the individual and FPC level;
    • clients widely accept the offer to be screened for chlamydia;
    • informal review of clinic notes by clinicians reassured them that screening was occurring; and
    • formal reviews through audits challenged the clinicians’ perception of chlamydia screening rates.
  • Challenges of chlamydia screening:
    • clients being considered low or no risk;
    • refusal by clients and dealing with decliners;
    • clinicians worrying that clients may be offended by screening offer so not offering.
  • Clinicians raised concerns about over-testing for chlamydia.

MANAGEMENT

  • Three quarters of clinicians suggested contact tracing the sexual partner(s) of clients in the 6 months prior to the chlamydia diagnosis.
  • Family planning clinicians were proactive in managing contacts of their clients:
    • almost all clinicians would encourage clients to tell partner(s)
    • three quarters would assist clients by providing a brochure containing information on chlamydia.
  • The Let Them Know website has become an important partner notification tool for family planning clinicians.
  • The Let Them Know website is a part of routine practice for many clinicians.
  • Use of the website varied between jurisdictions.
  • For clinicians not using the website, there is a desire to have access to this resource.
  • Contact managementfacilitators:
    • preparing clients for a positive test result;
    • low level of stigma associated with chlamydia; and
    • easy access to chlamydia screening for partners of clients.
  • Evaluating the success of contact management:
    • it is difficult to determine if clients notified their partner(s) and if partner(s) are tested and treated; and
    • there are few indicators for determining the success of contact management.
  • Challenges of contact management:
    • uncertainty around what is expected from clinicians; and
    • clinicians’ doubt around the importance of contact management for chlamydia.
  • The majority of clinicians acknowledged the benefits of patient delivered partner therapy although only 35% of clinicians ever used it. Most clinicians had concerns about using PDPT and its legal status was a major impediment to the uptake of the strategy.

RETESTING

  • Only 22% of clinicians recommend annual testing to all clients.
  • The majority (88%) of clinicians recommend clients return for retesting three months after a diagnosis of chlamydia.
  • The most common strategies for chlamydia retesting included recommending retesting at the time of initial treatment, explaining the importance of retesting after treatment and explaining the risk of repeat infection.
  • Most retesting was opportunistic; that is, a clinician noticed a recent positive chlamydia test recorded in a file and suggested a retest.
  • Evaluating the success of retesting:
    • it is difficult to determine the number of clients who return for retesting; and
    • clinicians were confident that new reminder systems were successful in getting clients to return for retesting.
  • Challenges to retesting:
    • clients often don’t return for retesting;
    • clinicians rely on opportunistic screening as retesting when clients return to the clinic;
    • uncertainty around the value of retesting for chlamydia; and
    • clinicians’ view that proactive retesting reminders undermine client responsibility.
  • ‘Proactive’ client reminder systems had mixed support from clinicians

ACON community forum on lesbian and gay drug trends – TUESDAY @ Oxford Hotel

Lesbian and Gay drug trends forum
Lesbian and Gay drug trends forum

Delighted to have been invited to speak at this community forum with Dr Toby and Miss Tokyo and community representatives… SWASH survey has a lot of data on alcohol, tobacco and other drug use. The main message from me will be: we need to talk about smoking… twice the rate. Still.

I’ll be interested to hear people’s sense of why this might be and – more importantly – what we might do about it. I’ll do a write up here. ACON have done a lovely design job on my slides, I’ll post them here after the forum.

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.

At the intersection of marginalised identities – paper on LGBT injecting drug users with hepatitis c

A paper based on work we presented at the Social Research Conference on HIV, Hepatitis C and Related Diseases, Sydney, last year. Email me for a copy of find it here:

Deacon, R, Mooney-Somers, J, Treloar, C, & Maher, L. (2013) At the intersection of marginalised identities: Lesbian, gay, bisexual and transgender people’s experiences of injecting drug use and hepatitis C seroconversion Health and Social Care in the Community. doi: 10.1111/hsc.12026. [Epub ahead of print]

Abstract: While the levels of injecting drug use among lesbian, gay, bisexual and transgender (LGBT) populations are high we know little about their experiences of injecting drugs or living with hepatitis C virus (HCV) infection. The loss of traditional family and cultural ties means connection to community is important to the wellbeing of LGBT populations. While some kinds of drug-use are normalised within many LGBT communities, injecting drug use continues to be stigmatised. This exploratory qualitative study of people with newly acquired HCV used semi-structured interviews to explore participants’ understandings and awareness of HCV, seroconversion, testing, diagnosis and treatment. We present a secondary thematic analysis of eight LGBT participants of the experience of injecting drugs, living with HCV and having a marginalised sexual or gender identity.

Community was central to the participants’ accounts. Drug-use facilitated connection to a chosen community by suppressing sexual or gender desires allows them to fit in to the mainstream; enacting LGBT community norms of behaviour; and connection through shared drug-use. Participants also described feeling afraid to come out about their drug-use to LGBT peers because of the associated stigma of HCV. They described a similar stigma associated with HIV within the PWID community. Thus the combination of being LBGT/living with HIV (a “gay” disease) and injecting drugs/living with HCV (a “junkie’s” disease) left them in a kind of no man’s land. Health professionals working in drug and HCV care services need to develop capacity in providing culturally appropriate health care for LGBT people who inject drugs.

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!