Product Details

Author Information

Corresponding Author
Margaret Dechman
Cape Breton University
PO Box 5300
Sydney, NS B1P 6L2
Canada
p: 1 902 563 1254
margaret_dechman@cbu.ca

Product Description and Application Narrative Submitted by Corresponding Author

What general topics does your product address?

Social & Behavioral Sciences

What specific topics does your product address?

Access to health care, Cultural competency , Health policy, Health services research, HIV/AIDS, Homeless health, Housing, Poverty, Social services, Substance use, Low Income Health

Does your product focus on a specific population(s)?

People Who Inject Drugs

What methodological approaches were used in the development of your product, or are discussed in your product?

Community-academic partnership, Community-based participatory research , Focus group , Qualitative research, Interview

What resource type(s) best describe(s) your product?

Research Report

Application Narrative

1. Please provide a 1600 character abstract describing your product, its intended use and the audiences for which it would be appropriate.*

Pathways Into and Out of injection Drug Use provides insights derived from a qualitative, community-based research project designed to offer individuals who engage in self-directed injection drug use with an opportunity to tell their side of the story to health professionals by whom they have felt judged, condemned, and rejected. The impetus for this project arose because many individuals who were using, or even had previously used, drugs outside the direction of the official health-care system felt so stigmatized when seeking medical attention they had simply given up doing so. Such withdrawal in turn was known to have exacerbated medical conditions, been implicated in premature deaths, and unfortunately reinforced the not-uncommon professional view that “those people” don’t want help. This report was prepared for the benefit of those working in the field of health or social services who would like to better understand how and why some of their patients/clients have become drawn into forms of drug use that may appear irrational from the perspective of anyone who has not found themselves in such situations. It also may be referred to by peer helpers when attempting to explain alternative perspectives to those who do not understand. Our hope is that when concerned professionals develop insight into the difficult circumstances faced by individuals whose lives have become entangled in destructive drug use they will be better able to collaborate with their clients/patients on the development and implementation of appropriate, realistic, and mutually-acceptable approaches with respect to not only substance-use but also more general issues of health and well-being.

2. What are the goals of the product?

The emphasis on stigma and othering addressed in this report grew out of the fears and concerns of individuals who were known to have consumed drugs outside the parameters established by the health-care system. With the annual distribution rate of the local needle exchange reaching 600,000 needles in 2016 for a population of only approximately 100,000 persons, and emergency health services in the area reporting an average of one drug poisoning incident a day, the situation had become critical. One person who injected drugs summed up their feelings of desperation by saying, “If someone doesn’t do something soon, I won’t have any friends left.” Another jokingly said, “I keep looking for my obituary in the paper.” Community meetings lobbying for increased addiction and mental-health services are now attracting hundreds of concerned citizens because so many people’s lives are being either directly or indirectly drawn into the life experiences described in this report.
The primary objectives of this report are fourfold:
1) first, and foremost, to give those who inject drugs an opportunity to describe the circumstances that have led them to engage in actions that elicit moral condemnation from others who have not found themselves in similar situations;
2) to provide professionals entering into work with this often hidden population with insight into the difficult and often no-win realities of life for people who inject;
3) to provide peer workers in the area of addictions with a life-course based research document to which they may refer professionals with whom they are working;
3) to offer a resource for grounding harm-reduction and/or recovery-focused policy and programming in the realities of life as experienced by individuals with prolonged, intensive drug-use histories.

3. Who are the intended audiences or expected users of the product?

The intended audiences for this document are: policy researchers and professionals whose work, while often not directly focused on harm-reduction or recovery, may include individuals with histories of drug use.

4. Please provide any special instructions for successful use of the product, if necessary. If your product has been previously published, please provide the appropriate citation below.

5. Please describe how your product or the project that resulted in the product builds on a relevant field, discipline or prior work. You may cite the literature and provide a bibliography in the next question if appropriate.

Considerable research has demonstrated the problematic and often conflictual nature of interactions between individuals who inject drugs and professionals tasked with providing health and social services (1, 7, 8, 9). Moreover, it is becoming increasingly evident that such adversarial encounters are proving costly to patients and health-care systems alike because of delays in seeking care (1, 3, 6). While some research has examined the interpretive and communications styles that may prove problematic at the time of professional-patient/client interactions (2), less is known about the broader life-course-based experiences individuals with prolonged histories of drug use bring to such encounters. As trauma-informed research is now demonstrating (10, 11), such broader contextual information is critical to providing appropriate care. The Canadian report Nothing About Us Without Us (4) clearly demonstrates how even well-meaning initiatives are unlikely to be effective if not informed by the realities of the life worlds of patients. Even though peer-support workers and navigators are being hired to bridge the divide between professionals and patients/clients (5, 12), they are likely to find their jobs very difficult unless the professionals with whom they are working become better informed about the realities of their patients/clients lives. Although research directed toward publication in academic journals may involve first-voice accounts, this forum is not conducive to providing a broader live-course-based picture from the perspective of those whose lives have followed trajectories even they themselves struggle to make sense of. This community-based research report was designed to provide those experiencing prolonged histories of drug use with an opportunity to speak freely about their lives and experiences seeking health care without fear of being personally identified and stigmatized.

6. Please provide a bibliography for work cited above or in other parts of this application. Provide full references, in the order sited in the text (i.e. according to number order). .

1 Brener L, Von Hippel W, Kippax S, Preacher K. The role of physician and nurse attitudes in the health care of injecting drug users. Substance Use and Misuse 2010;45:1007–1018.
2 Chang J, Dubbin L, Shim J. Negotiating substance use stigma: The role of cultural health capital in provider-patient interactions. Sociology of Health and Illness 2016;38:90-108.
3 Fuertes J, Mislowack A, Bennett J, Paul L, Gilbert T, Fontan G, Boylan L. The physician–patient working alliance. Patient Education and Counseling 2007;66:29–36.
4 Jurgens, R. Nothing about us without us. Toronto: Canadian HIV/AIDS LegalNetwork; 2008
5 Li J, Borgatti W, Clair S, Dickson-Gomez S. A social network approach to demonstrate the diffusion and change process of intervention from peer health advocates to the drug using community. Substance Use and Misuse 2012;47:474–490.
6 McNeil R, Small W, Wood E, Kerr T. Hospitals as a “risk environment”: an ethno-epidemiological study of voluntary and involuntary discharge from hospital against medical advice among people who inject drugs. Social Science and Medicine 2014;105:59–66.
7 Merrill J, Rhodes L, Deyo R, Marlatt G, Bradley K. Mutual Mistrust in the Medical Care of Drug Users. Journal of General Internal Medicine 2002;17:327–333.
8 Neale J, Tompkins C, Sheard L. Barriers to accessing generic health and social care services: a qualitative study of injecting drug users. Health and Social Care in the Community 2008;16:147–154.
9 Ning A. Games of Truth: Rethinking Conformity and Resistance in Narratives of Heroin Recovery. Medical Anthropology 2005;24:349–382.
10 Redley M. The clinical assessment of patients admitted to hospital following an episode of self-harm: A qualitative study. Sociology of Health and Illness 2010;32:470-485.
11 Tang S, Browne A, Mussell B, Smye V, Rodney P. ‘Underclassism’ and access to healthcare in urban centres. Sociology of Health and Illness 2015;37:698-714.
12 Treloar C, Abelson J. Information exchange among injecting drug users: A role for an expanded peer education workforce. International Journal of Drug Policy 2005;16:46–53.

7. Please describe the project or body of work from which the submitted product developed. Describe the ways that community and academic/institutional expertise contributed to the project. Pay particular attention to demonstrating the quality or rigor of the work:

• For research-related work, describe (if relevant) study aims, design, sample, measurement instruments, and analysis and interpretation. Discuss how you verified the accuracy of your data.
• For education-related work, describe (if relevant) any needs assessment conducted, learning objectives, educational strategies incorporated, and evaluation of learning.
• For other types of work, discuss how the project was developed and reasons for the methodological choices made.

This project was initiated by individuals who were using drugs by means of injection and who felt their perspectives were not being heard. The impetus for the research and the associated report grew out of challenges experienced by staff and clients of the Sharp Advice Needle Exchange with respect to not having their voices entered into public and policy debates on health-related issues that impacted their lives in very real, severe, and immediate ways. In an effort to improve bi-directional communications and ultimately collaboration and health outcomes, the organization responsible for the oversight of the needle exchange and staff from government-based addictions services came together and approached Dr. Dechman to work with them on a research project aimed at enhancing understanding between patients/clients who were injecting drugs and health practitioners.

The questions for focus groups and interviews were developed by the research team in collaboration with an advisory committee that included both individuals who accessed the needle exchange and health professionals. Within this overall program of research, there were three primary data-collection initiatives: five focus-group sessions with 12 natural helpers, 20 personal interviews with individuals who had injected drugs on a regular basis for at least one year, and 20 personal interviews with primary-care professionals whose patients/clients included individuals who inject drugs. Natural helpers are individuals who typically have personally utilized the services of the needle exchange and who distribute injecting equipment to friends, family, and/or acquaintances who are reluctant or unable to personally access the exchange. The group of natural helpers consisted of representatives from the various communities served by the needle exchange who had regular contact with the largest numbers of clients. The individuals currently engaged in injecting included those 19 years of age and over who regularly accessed the needle exchange in person and were able and willing to come to the central exchange site to be interviewed. Oral consent was received from all focus-group and interview participants to allow for audio-taping, which was then transcribed verbatim and thematically analyzed using ATLAS.ti. While the questions for both focus groups and interviews were developed to direct attention toward pertinent health-related issues, all participants were encouraged to provide additional details and/or discuss other issues they personally felt were important. The first of the five focus-group sessions with natural helpers were designed to give those involved an opportunity to get to know each other and the academic researcher, Dr. Margaret Dechman. During this focus group, natural helpers were asked to describe what they wanted people to hear about what it was like to be a person who injected drugs. Subsequent focus-group sessions covered the work and experiences of natural helpers and their observations of the health challenges facing individuals who were injecting. While addressing similar topics as those discussed in the focus groups, interviews also introduced some life-course-based questions: health problems and experiences seeking medical attention for non-drug-related issues as well as drug-related complication; forms of self or informal treatment used; experiences with school, employment, and community-based activities when younger; history of drug use, its inception and consequences; harm reduction knowledge and practices; personal perceptions of why people use drugs; and what they would like to tell people about their experiences. All focus group sessions and interviews were conducted at the AIDS Coalition of Cape Breton (ACCB) by one or more of the three authors. The focus groups took about 1.5 to 2 hours each to complete, while the interviews averaged 45 minutes to an hour.

8. Please describe the process of developing the product, including the ways that community and academic/institutional expertise were integrated in the development of this product.

Whereas the design and implementation of the project was led by the community in collaboration with academic and government team members, everyone involved felt it was best for the report preparation to follow a consultative format. Not only was literacy an issue for some but also neither the community organization nor the people they served were interested in, or able to dedicate the extensive time required for, analysis and writing. Hence Dr. Dechman, the academic researcher, conducted the thematic coding, report preparation, and development of associated community presentations through a process of continued engagement and oversight from the natural helpers and others with lived-experience injecting. When reporting on quantitative research that provides precise distributions based on random sampling and strictly structured questions, members of the community and first-voice participants typically are relied upon to provide validation of interpretations. However, qualitative research requires additional community and first-voice participation in the selection of themes and quotes to ensure the final report captures both the variability and distribution of positions in the population as accurately as possible. During the preparation of this qualitative-based research report, Dr. Dechman met with natural helpers for three three-hour working sessions to systematically review each of the three sections of the report. As a final validity check, an additional meeting was held with 25 individuals who were currently injecting but had not personally been involved in the research being presented. At this meeting, Dr. Dechman again reviewed the articulated themes and quotes to ensure the report reflected all salient topics and presented a balanced voicing of alternative positions on each topic.

9. Please discuss the significance and impact of your product. In your response, discuss ways your product has added to existing knowledge and benefited the community; ways others may have utilized your product; and any relevant evaluation data about impact, if available. If the impact of the product is not yet known, discuss its potential significance.

As a result of the project from which this report was developed, the authors have been asked to present their work through a number of key forums: conferences on communicable disease, pain management, and addictions care; professional and administrative meetings of Public Health, First Nations health services, and Emergency Health Services; and presentations to the general public. Coverage of the research and associated presentations was provided through local newspapers and radio.

Making inroads through the types of “othering” and moral disdain experienced by participants in this research is not something that happens quickly. However, as the voices of those whose lives have become entangled in detrimental drug use have been more broadly heard, a number of compassionate, concerned health professions have stepped forward to offer services specifically to this population. A health clinic has been formed at the Ally Centre that houses the needle exchange. This organization provides a safe and trusted environment for those who inject. An evaluation framework has been developed to monitor: the life circumstances and health issues of patients being seen at the new clinic, changes that may have occurred with respect to the lapsed time before patients seek treatment, as well as changes in requirements for emergency-based treatment. A needs assessment also has been conducted to provide a foundation for the development of outreach-health services to those who lack transportation to get to the established clinic. At a broader system level, recommendations based on the research findings have been submitted to our government partners and a committee is being convened to better co-ordinate services for this population. Our public presentations throughout surrounding communities also have served to solidify partnerships with foodbanks and other community-based organizations that have now come forward to offer space within their facilities for outreach-health and harm-reduction services.

It is the opinion of the authors that while research such as that which has formed the basis of Paths Into and Out of Injection Drug Use cannot reasonably be expected to result in immediate pervasive changes to the moral culture of a community, it does legitimate alternative, more compassionate approaches to health care at least among those who are open to a harm-reduction philosophy. It is hoped that in the long-run this will prove to be the first step toward building the critical mass of support necessary for sustained harm-reduction, treatment, and community-health measures.

10. Please describe why you chose the presentation format you did.

This report has been designed as a full-content document, which serves as detailed backup for presentations and media coverage. While it is written for a professional audience and provides some academic contextual information, the majority of the text is composed of direct quotes from the research participants. Such a report will not only be of interest to those who would simply like more information but also should prove useful to anyone who wishes to draw upon the research findings for policy and/or academic work.

11. Please reflect on the strengths and limitations of your product. In what ways did community and academic/institutional collaborators provide feedback and how was such feedback used? Include relevant evaluation data about strengths and limitations if available.

The primary strength of the research process and associated report is that the initiative was, at every step of the process, conceived and shaped by individuals involved in injection drug use. It was initiated as a means of speaking out against the sigma associated with injecting by having the first voice side of the story become more public. People using drugs themselves as well as those who work closely with them steered the question development, conducted the interviews, and provided feedback on the final document. While focus-group sessions provided those involved with moral support and hence more confidence in expressing their views when first introduced to the academic researcher, individual interviews were conducted by the principal-investigator from the Ally Centre with whom people were completely comfortable discussing their more personal situations.

The limitations of the project stem primarily from those whose voices are not present. Because the research population was restricted to individuals 19 years of age or older who accessed or even volunteered at the needle exchange, it does not include the perspectives of younger and/or more hidden users. It can reasonably be assumed that the reluctance to seek medical attention for fear of detection would be felt even more strongly by this population. It is also possible they may be entering injecting for somewhat different reasons than those expressed by older, more prolonged, and visible users.

12. Please describe ways that the project resulting in the product involved collaboration that embodied principles of mutual respect, shared work and shared credit. If different, describe ways that the product itself involved collaboration that embodied principles of mutual respect, shared work and shared credit. Have all collaborators on the product been notified of and approved submission of the product to CES4Health.info? If not, why not? Please indicate whether the project resulting in the product was approved by an Institutional Review Board (IRB) and/or community-based review mechanism, if applicable, and provide the name(s) of the IRB/mechanism.

One of the greatest challenges of conducting research with marginalized/stigmatized populations such as those who inject drugs is the power differential that exists between those who speak and those who are spoken about. Significant attention was directed toward this issue. First and foremost, all interviews and focus-group sessions were conducted at the needle-exchange site by the executive director who is trusted and well respected by the participants. We also introduced our work to the community through focus-group sessions before moving to one-on-one personal interviews. This process was adopted to enhance the conjoint power of those who inject by initially posing key research questions a group rather than individuals. Participants were informed, in writing or in person depending on literacy levels, about the questions that would be asked prior to attending any interview/ focus-group session. Informed consent was acquired anonymously to protect the identity of all participants. Although specific questions were designed to guide the general direction of each session, participants were encouraged to express themselves freely and develop tangential lines of discussion they considered relevant. Consequently, the themes discussed in this report have arisen from participants/interviewees as well as facilitator/interviewer lines of inquiry. Each participant received a $25.00 honorarium as a thank you for each focus group or interview in which they participated.