Exploring the Experiences of Injecting Drug Users Living with Leg Ulceration: a Qualitative Design
There is a paucity of scientific evidence into the lived experience of people who have a history of injecting drug use and are living with leg ulceration. Portraying the true voice of injecting drug users (IDUs) through narrative means is a novelty in contemporary literature. The representation of the life and the person behind the leg ulcer, having experienced addiction, is original from a purist narrative perspective. This study, led from the perspective of a nurse-researcher leading in the field of wound management, offers a unique opportunity to gain a rare glimpse into the daily life of IDUs, as reported in their own words. The aim of this study was to explore the experience of injecting drug users living with leg ulceration using qualitative methodology. A naturalistic paradigm framed the design by allowing participants to control the data in an unrestricted an open manner without direct intrusion form the researcher. Qualitative methodology was central to collecting data on life experience and feelings. The ethics process detailed a rigorous application to explore the professional, ethical virtues from the perspective of an insider-outsider working with sensitive data in a marginalised population. Diaries were kept and recorded by participants over four weeks in their routine daily life; this was followed by semi-structured interviews. The diaries allowed a unique insight into the past, present and future of IDUs and how their ulcer affected their lives. The diaries also facilitated a means of reflection on themselves and their wounded body. The interviews offered an opportunity to explore in detail the diary entries and other stories participants wished to share. The study recruited twelve participants from leg ulcer clinics set in London; three women and nine men older than 18 years of age (median age of 52 years; range 35 - 62 years). Ten completed the data collection process; two of the participants, aged 61 and 62 years, were married. Gatekeepers working with IDUs with leg ulceration were central to the process of engagement and recruitment. Participants welcomed the design as an opportunity to voice and share their journey of living with an open wound. The findings revealed the detailed suffering participants endured living with their ulcer: pain, shame and stigma were clearly voiced in their narratives. The majority of participants had experienced some form of stigma during their life and this was exacerbated as they were drug users. The self-blame and punishment triggered by this felt stigma was a detriment to the health of participants. Those in contact with specialist wound care services saw a significant improvement in wound healing and this had a positive impact on their wellbeing and their overall outlook on life. Participants also voiced enacted-stigma experienced from encounters in health practice. These negative experiences exacerbated the self-stigma. Findings also portrayed the multiple characteristics and talents of participants including humour, art and resilience. This research contributes to science and practice by understanding the lives of IDUs living with leg ulceration. It provides a platform from which to engage both generalists and specialists who care for these patients and has the potential to influence medical and social policy-making and clinical practice in this field. By means of narrative inquiry, this study may challenge the conventional social stereotypes, the taboos and the stigma still experienced by this patient group in health care.
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