Research design

The research is structured in phases, in line with the reflexive and feminist approach to research I am adopting. The process is not linear but instead is an ongoing, messy process with each phase of data collection overlapping, and informing the conduct of the following phases, as well as the analysis of previous phases. Methods used are: participatory literature review; participatory creative workshops; stakeholder interviews; life story interviews; and a participatory analysis workshop.

4.2.2 Methods

The first participatory stage, presented in chapter two, included older women living with HIV with experience as community representatives in HIV and ageing clinical studies, to explore and reflect on the conclusions of a systematically- approached review of the existing evidence base. This upholds the ‘s’ and ‘o’ of the STORY approach to feminist epistemological knowledge creation: suspicion and questioning of ‘master narratives’ and objecting to objectivity (Nadar 2014). These, along with a commitment to gathering and telling stories, a reflexive approach, and seeking to influence positive change (the remaining elements) will continue to be practised throughout this research.

Detail on participant demographics and reflections on the process of data collection through subsequent methods are presented in chapter six. Here, I offer an overview of the methods used in each phase of this study.

The first phase of data collection was participatory workshops, which included a range of icebreaking and group activities, discussions on various topics using focus group methodologies, and a creative exercise drawing on an adaptation of the ‘body mapping’ technique. The workshop plan is included at Appendix 5. Body mapping was developed in the HIV context by Jane Solomon, working with the

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Bambanani support group, in Cape Town, South Africa amongst others, and is outlined in a manual titled ‘Living with X’ (Solomon and Morgan 2007). For this research I drew on that manual, as well as personal communications with Nondumiso Hlwele from Bambanani, to adapt the body mapping technique. In a call, Hlwele provided insights into her own experiences as both a facilitator and a participant in body mapping workshops, and advised that whilst the full technique is a multi-day workshop, she felt it would be possible to adapt the methodology to use only some of the activities in a shorter time frame (personal communication, phone call, 7th _{March 2016).}

Body mapping grew out of memory box and similar methodologies – where people with AIDS were supported to use crafts and creativity to explore their feelings and emotions whilst creating a lasting memento, often for children or other relatives (Solomon and Morgan 2007). As treatment became available, and people diagnosed with HIV were no longer being prepared to die but supported to live, body mapping was developed to replace memory boxes, as a tool to explore feelings about the future, hopes and dreams, and adapting to live with HIV. Participants are led through a series of activities, over a five day workshop, exploring their feelings and experiences about HIV. This can be used, the authors suggest, as a therapeutic tool, for healing, for gathering and telling life stories, and also as a research tool (Solomon and Morgan 2007, p.3):

… body maps can be used in research. They work well as a participatory qualitative research tool, if the participants give their informed consent. The drawings and paintings are data in themselves, and can also be supplemented with interviews or writing.

I used body mapping as a research technique to support women to explore and share their experiences through creative means, with the intention that this facilitates greater sharing and offers an alternative to discussion, for those participants who prefer it. The drawings themselves are a form of data, and were also a subject of discussion – providing further data for analysis as women presented and described their drawings and their feelings about them (Richards 2011). Visual methods such as body mapping can aid participation by increasing participant ‘ownership’ of the process and providing an accessible route in to sharing and discussion (Richards 2011).

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The second phase of data collection was stakeholder interviews. Stakeholders, including clinicians, researchers, service providers, policy analysts, and older women living with HIV with an additional professional involvement in services, research or policy were recruited based on a stakeholder mapping exercise. Interviews were semi-structured and informed by a review of relevant policy. The findings from these interviews are presented in chapter five.

The next phase of the research was life story interviews. Life story is an interview approach that offers a more balanced, power-neutral and wide-ranging interaction between the researcher and participant, and deeper exploration of key issues and meanings. The method has been developed and elucidated by Robert Atkinson, who roots the method in the recognition that people are natural storytellers (Atkinson 2012, no page number):

Our life stories connect us to our roots, give us direction, validate our own experience, and restore value to our lives.

As a method, the life story interview helps us to understand the making of meaning, construction and reconstruction of experiences and understanding of the individual’s life. It further brings out the individual voice of the storyteller, built on respect and regard for them and their subjective meanings, with a focus on equitable exchange between the researcher and the storyteller. This supports a balanced relationship, and a degree of mutuality and sensitivity where benefits to the participant are not outweighed by the objectives of the researcher. Atkinson suggests it has particular value in studies with older participants, as it encourages a whole life ‘look back’ approach.

The interview itself is open, with the researcher asking broad prompt questions, such as (Atkinson 1998):

 What were the most influential events on you in your adult life?  How would you describe yourself?

 What is different or unique about your community?

The life story method is particularly suited to feminist and participatory research, preserving and prioritising the voice of the individual and privileging their own sense of what is valid, relevant, and important. Life story interviewing builds interconnectedness and lessens the divide between the researcher and

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interviewee, and enables a wider and deeper understanding of identity and experiences (Atkinson 2012). Demographics and other details are presented in Chapter six.

The final phase of this research was participatory data analysis conducted through a workshop, described in detail in Chapter six. This process engaged older women living with HIV in analysing transcript excerpts, developing and grouping codes and exploring meanings and themes.