PWID report a general reticence to seek formal medical care for SSTIs, despite a thorough knowledge of SSTI and associated risk of morbidity and mortality. This leaves many PWID in a position to engage in self-care strategies. Participants accurately describe the risk factors, symptoms, and natural history of SSTIs, noting progression cellulitis that may be self-limited to an abscess that requires intervention. Participants describe a range of self-care techniques. Non-invasive techniques for early cellulitis include applying hot compresses, applying salves, “whole body” health such as hydration and rest, and procuring antibiotics from non-medical sources. Once the SSTI formed into an abscess, more invasive self-care techniques were considered necessary. Invasive techniques include needle aspiration and incision and drainage procedures, performed on oneself or by another non-medical person. Many participants also expressed familiarity with effective techniques for wound care once an abscess is opened.
Participants generally had robust knowledge and experience with SSTIs. This creates an opportunity for partnership, empowerment, and knowledge exchange between PWID and the healthcare community. Harm reduction agencies and healthcare professionals should create open dialogs with PWID to learn from these communities and subsequently develop workshops and printed information to propagate this knowledge and address any misconceptions that may exist. One important conceptual deficit we identified was defining specifically when an SSTI has progressed to the point when it needs prompt medical intervention. This critical point is acknowledged by the participants, but not clearly defined. Given the common hesitancy in seeking formal care, this is crucial, and education efforts should focus on identifying serious SSTIs early.
Participants also reported a variety of techniques to treat themselves in the absence of medical care, ranging from non-invasive to invasive procedures. Generally, the non-invasive techniques, including warm compresses, applying salves, clean bandages, and optimizing general health while fighting an infection are in line with common medical recommendations, and these should be encouraged without reservation. Peer educators should be empowered to facilitate workshops, provide material resources, and educate their communities on these topics. Receiving this education from a trusted peer can propagate this knowledge, engender trust, and provide linkage to harm reduction agencies and the health system, as has been demonstrated with other disease processes in communities experiencing barriers to care . The prompt identification of severe or worsening infection that requires prompt medical care should be emphasized in these teachings. These peer educator/advocates must be provided with the tools and knowledge to do so confidently and effectively. These recommendations should also be provided with the caveat that it is always best to seek medical attention if one is able to do so, and these techniques alone will not cure all SSTIs.
Due to the marginalized status of PWID and their structural barrier to care, self-directed and peer-based care has been a long-standing coping strategy for SSTIs [9, 20]. Levin noted the long history of public demand for self-care among the general population and provides a sociological and ethical framework to understand this . In line with harm reduction philosophy and emphasizing patient autonomy, they underscore the importance of peoples’ independence and ability to define their own “risk mix.” They further state that “people’s integrity in making health decisions and their ability to perform on their own behalf take precedence over any and all existing professional values of risk reduction and disease cure … health professionals will have to reorient their perspectives on health, with reduced primacy” . In addition, task shifting to peer health workers (PHW) is an ongoing debate in low-and-middle-income countries with insufficient medical staffing. In addition to expanding capacity, PHWs can also bridge the cultural gap between the patient and the provider. This occurs because the peer health workers are fluent in the vernacular of their patients, they are the patient’s first point of contact, easing them into the difficult to navigate norms of health care setting, and can educate the health care provider on providing culturally appropriate care to the patient . Peer health workers are another resource that should be considered in addressing the disparities in care for PWID.
More invasive self-care techniques, including taking non-prescribed antibiotics and incising abscesses, were also reported with surprising frequency. This gives rise to myriad concerns, including increasing antibiotic resistance, allergic reactions, antibiotic-associated diarrhea, and surgical complications including hemorrhage and seeding deep space and orthopedic infections. However, given the ubiquity of these techniques for SSTIs, and the general mistrust in the medical system among this population, simply discouraging self-care will not likely be effective, especially in the absence of feasible alternatives. Chastising these behaviors would likely be detrimental to the already fragile relationship between healthcare providers and PWID. The optimal way to dissuade these risky behaviors is to make them unnecessary: PWID should have access to healthcare. Unfortunately, achieving this is slow and halting. Mending the relationship between PWID and healthcare providers requires significant effort. Healthcare providers should be educated on the needs and perspectives of PWID, and PWID should be provided with resources for navigating a health system that is often hostile to them. This is additionally challenging due to the disadvantageous power dynamics that PWIDs are subject to. Alternatively, creating access to health care providers in low-threshold and unconventional venues, including syringe exchanges, street outreach, free clinics, and homeless shelters/housing, may improve access and obviate the need for these risky self-care behaviors. When coupled with compassion and humility, these approaches may allow otherwise guarded patients engage in trusting and productive relationships with healthcare providers in spaces that are safe and supportive to them. This would not only benefit these individual persons, but also build trust in these communities and reduce the need for more costly and morbid intensive care downstream. However, these resources are currently scarce in most regions and are not comprehensive in availability or scope where they are present. These resources require substantial investment and should be prioritized as an important component in addressing this issue, but this is not likely a viable, universal, or timely solution in the near future.
Finally, in the absence of tangible alternatives, and in the spirit of harm reduction, PWID should be provided with resources to perform these self-directed interventions as safely and effectively as possible. The reality of these behaviors should be acknowledged and discussed openly, and not treated as taboo or blindly discouraged. There are certainly risks conferred by the self-care practices that PWID are forced to resort to. However, these risks are not taken lightly by PWID; they are weighed against the risk of inaction and worsening infections, which is well known in these communities. The resourcefulness of these communities should be recognized, and this discourse should first be viewed as an opportunity to learn from these lived experiences, and secondarily as an opportunity to provide education on best practices, and also the potential futility and harms of these self-directed approaches. In line with this aim, harm reduction agencies could provide PWID-friendly antibiograms describing the types, dosages, and durations of antibiotics that are helpful for SSTI in that region, while also urging caution, recommending physician consultation, and describing risks of using inappropriate or inadequately dosed antibiotics. Similarly, PWID should be educated on draining abscesses safely and effectively, while being encouraged to seek formal care if they are able. Harm reduction agencies could provide educational materials that include aseptic methods, incision techniques, wound exploration and packing, and hemorrhage control. They should also describe high-risk areas and presentations that should only be addressed by a medical professional (i.e., abscesses in the neck, abdomen, hands, and groin, and wounds concerning for necrotizing soft tissue infections), and provide guidance on addressing these through formal healthcare channels. They could also provide equipment including antiseptic solution, gloves, scalpels, sterile gauze, and even topical anesthetics. These resources should be provided with the caveat that medical attention is always the best course of action, while acknowledging that this is not always feasible for many PWID. Given that these practices are already common, employed in the absence of adequate training and supplies, and few feasible alternatives exist for many PWID, it is unlikely that supplying resources and education will increase the incidence of self-care or the theoretical harms associated with them. Conversely, these educational interventions and resources to support PWID will almost certainly decrease the harms associated with these self-care techniques, even if the rates remain constant. An open dialog regarding the reality of these self-care techniques may be a potent tool in decreasing the risk of complications due to improper care, and ultimately may decrease the prevalence of invasive self-care by creating new relationships and avenues to achieve formal care. Empowerment and education is the responsible approach to minimizing harm and improving outcomes for this vulnerable population that is too often excluded from formal medical care.
Understanding and addressing the root of why PWID partake in self-care is essential. One key factor to delay is past or perceived negative experiences arising from contact with medical providers. Discrimination, unaddressed pain, fear of withdrawal, and stigma are all reasons why PWID delay seeking care from medical professionals [1, 26]. The most important strategy health providers at all levels can employ is to reach out to spaces that are low-threshold for PWID or work to educate other healthcare providers and change their local culture to create inclusive environments and provide positive medical experiences for PWID. Addressing pain concerns and staving off opioid withdrawal in a clinical setting, while treating this population with compassion and dignity, is paramount to improving trust and subsequently access for this marginalized population.
This study does have some limitations and is primarily exploratory and hypothesis generating. First, this is a secondary analysis of qualitative data obtained for a separate, but related study. Ideally, the authors would have conducted subsequent interviews, further exploring the specific topic of interest and reaching saturation in these communities. Second, the sample was largely white and male. Future investigations should purposively seek the perspectives of people of all genders, races, and ethnicities. The study was also limited to two metropolitan areas, and while they are distinct from one another, they do not represent all communities of PWID. Particularly in nuanced topics like this, more geographic diversity would benefit the generalizability of the findings. Third, this study is a secondary analysis of qualitative themes that emerged during the initial data collection. However, given that the initial focus of this project was not self-care per se, saturation was not reached on this theme and many novel codes continued to emerge in retrospective analysis. SSTI self-care is individualized and multifaceted and achieving saturation would likely require a much larger cohort, specifically targeted for diversity of self-care experiences. Unfortunately, the researchers did not have the ability to expand the qualitative cohort at this stage of the project, so only our initial exploratory findings are presented here. Lastly, this study relies heavily on participants’ recollection, and is susceptible to recall bias, particularly for these traumatic and emotionally charged events.