Practical wisdom gained from journeying with HIV : narrative therapeutic research

Abstract

Stories about HIV are everywhere. They are told (i.e. constructed), heard (i.e. taken in) and then re-told (i.e. shared). It is when we start asking questions about such stories, that new story "versions" become available; to be told, heard and possibly retold. Given the methodological boundaries connected to HIV research, few research studies are able to utilize the research context to venture beyond the mere collection (i.e. hearing) and re-telling (i.e. sharing) of story experiences. As a result, the hidden, alternative story "versions" which are "awakened" during the research process, may remain untold. Over the course of 4 months, the researcher utilized the existing dialogical space of the therapy context, as a practical platform for researching the dominant, as well as the "absent but implicit" meaning of HIV. Through ongoing dialogical interaction, this research journey set out, to not only hear the dominant stories told about HIV, but also to explore the hidden, preferred alternative story "versions". An adolescent girl living with HIV acquired through mother-to-child transmission, collaborated with the researcher to engage in this journey of therapeutic co-research. With this narrative report, I invite you to become an audience member to this unfolding journey. Throughout this report, I used the word "journey" as a guiding metaphor, situating the act of meaning making as a collaborative ongoing process of co-research, rather than a collection of facts. This research report is a narrative in itself and is subdivided into three parts. Part I includes all chapters written before my journey with the adolescent as co-researcher; part II includes all aspects related to our journey as co-researchers; and part III involves the time period after our journey as co-researchers. In part I, chapter 1, I introduce you to my way of speaking (i.e. narrative language), grounded in my way of seeing (i.e. social constructionist paradigm). In chapter 2, I shared with you my own narrative in making sense of HIV through personal reflective journal entries. By doing so, I acknowledge that I, researcher and therapist also tell stories about HIV through my statements, questions and everyday actions and interactions. In chapter 3, I reviewed academic literature in an attempt to research how adolescent HIV is "authored" (narrated) to the public by various academic discourses. In chapter 4, I reviewed narrative research studies of illness stories, relevant to adolescent HIV. Hereafter I stated my research question, justification, aim, and objectives. In chapter 5, I provide an overview of the research process, as was undertaken for the purpose this journey. In part II, I introduce you to "Gabby" (pseudonym), my co-researcher and co-author of this narrative report. Gabby regularly received ART at the paediatric out-patient unit at Kalafong Tertiary Provincial Hospital at the time of our interaction. In chapter 6, I describe the project phase (chapter6), alongside Gabby's participation. The project phase was situated within a narrative social constructionist frame. It consisted of two sub-phases as a means to transform the therapeutic context to one of therapeutic co-research. The first sub-phase stretched over the course of 3 months as Gabby participated in the Collaborative Storybook Development (CSD) project. The CSD project was based on the narrative therapeutic work of Freedman and Combs (1996) on story construction and development. Each session was video recorded for the purpose of co-reflective discussion during the second sub-phase. Focussed co-reflection sessions formed the second sub-phase, which took place once a week and stretched across an additional 1 month period. The aim of this sub-phase was to collaboratively review how storytelling was employed to make sense of HIV throughout the CSD project. Over the course of four months, the project phase allowed for in-depth co-research into the meaning of HIV. Part III documents the time period following our journey as co-researchers. Chapter 7 is a reintegration (telling) of the new knowledge and practical wisdom constructed during the project phase. Such "telling" is done in the form of a storybook. Chapter 8 sheds some light on the narrative practice of reincorporation (sharing). This involved the sharing of new knowledge with audiences outside of the co-research dyad. In chapter 9, I discussed the ethical considerations undertaken in this research. This is followed by a discussion on the shortcomings and limitations of this journey. Based on the practical wisdom gained from this journey, recommendations are made for future endeavours.