CATIE News

1 September 2020 

Why many people may not disclose substance use to healthcare providers

  • A Vancouver study found half of respondents did not disclose drug use to care providers
  • People living with HIV and Indigenous people were less likely to disclose their drug use
  • People who did disclose their drug use reported receiving lower quality healthcare

According to a team of researchers from the BC Centre for Excellence in HIV/AIDS, the BC Centre on Substance Use, the First Nations Research and Knowledge Exchange and universities in Vancouver, studies have found that in Canada some people who use substances “experience high rates of co-occurring mental illness, infectious disease, and chronic medical conditions that are further exacerbated by high rates of poverty and homelessness.”

The Vancouver team reviewed the scientific literature on issues related to the care and treatment of people who use drugs. The researchers found that although substance users experience many health issues, getting help is not easy. Researchers in Vancouver report that people who use substances can face “substantial barriers to receiving quality and equitable healthcare services. People who use drugs often delay or avoid care due to experienced and/or anticipated stigma and discrimination within the healthcare system, which can lead to insufficient care for drug use and co-occurring health problems.”

Furthermore, the Vancouver researchers also stated that “people who use drugs may strategically choose not to disclose drug use or the full extent of their drug use to healthcare providers over concerns of being denied care, as well as potential legal, child welfare, housing, and employment consequences associated with criminalization of drug use.”

The researchers undertook a study to better understand factors associated with non-disclosure of substance use to healthcare providers. To do so, they surveyed 261 people who used substances and found the following:

  • 52% of people surveyed did not disclose their substance use to care providers
  • Indigenous people were less likely to disclose than non-Indigenous people
  • people with HIV were less likely to disclose their substance use
  • people who disclosed their substance use had lower self-rated quality of care

The research team stated that its findings underscored the need for “culturally safe and non-stigmatizing care to address pervasive stereotyping in the healthcare system and improved screening for substance use disorder in outpatient healthcare services.”

Study details

Participants were recruited from two ongoing studies involving people who used substances in the greater Vancouver region.

Data were collected from “an interviewer-administered questionnaire that was collaboratively developed with three local drug user organizations.”

A brief average profile of participants is as follows:

  • 66% men, 33% women
  • age – 51 years
  • HIV positive – 58%
  • Hepatitis C virus (HCV) positive – 77%
  • accessed or needed mental health care in the past six months – 71%
  • experienced chronic pain in the past six months – 48%
  • injected street drugs daily – 25%
  • experienced an overdose in the past six months – 10%
  • received general medical care from one clinic – 85%

Results

Researchers found that 52% of participants did not disclose their substance use to their “most commonly accessed healthcare provider” in the past six months.

People who disclosed their substance use were more likely to share the following features or characteristics:

  • live in the Downtown Eastside neighbourhood
  • be homeless
  • engage in daily injection of substances

People who did not disclose their substance use were more likely to be:

  • Indigenous
  • HIV positive

Problems with care

According to the research team, people who disclosed their substance use reported significantly reduced overall quality of care and, in particular, problems in the following areas related to healthcare:

  • dignity and respect
  • communication
  • confidentiality

Researchers also found that people who disclosed their substance use were more likely to report the following:

  • unable to get the care that they needed
  • delaying care because they had been treated poorly in the past
  • feeling that they were refused healthcare because of their drug use

Possible solutions

The findings from the study spurred the research team to make the following statements in an effort to find solutions for substance users:

  • “Previous research shows that the most successful and appropriate treatment modalities for people who use drugs are rooted in a harm reduction framework, trauma-informed care approach, and non-judgmental practices.”
  • “Although the decision to disclose substance use belongs to individuals, health care providers have a responsibility to facilitate an environment where individuals feel willing and safe to do so. To this end, provider training that models empathy and compassion for people who use drugs and integrates ongoing self-reflection of personal biases relating to client drug use is imperative. The reduction in stigma and discrimination that arises from non-judgmental health care services is an important consideration, as internalized stigma has been previously associated with non-disclosure of drug use.”
  • “There is also a need to improve addiction training among physicians, as studies have shown that physicians often fail to screen clients for substance use disorders.”
  • “In addition to reducing stigmatizing and discriminatory practices in health care, health care providers should consider evidence-based screening and brief interventions in primary care settings for people who use drugs. These interventions aim to identify and personalize addiction treatment through periods of brief counseling with the client, which has been shown to be an effective and low-cost strategy. These interventions may also facilitate rapport and trust building with people who use drugs, which may increase the rate of drug use disclosure, but further research is needed to confirm this.”

Meeting the needs of Indigenous people

The researchers also stated the following:

“Importantly, to avoid further exacerbation of health care inequities and discrimination experienced by Indigenous peoples specifically, there is a need for screening tools that are designed by and for Indigenous people to improve cultural safety and validity…. It is important that such tools be applied routinely rather than on an ad hoc basis to avoid the intrusion of racial bias into screening rates, which could further stigmatize Indigenous people who use drugs. To this end, the routine nature of the screening should be made clear to participants. Moreover, it is essential that diagnoses are approached from a culturally competent lens, incorporating strategies such as pre- and post-test counselling, working to develop trust, and avoiding stigmatizing practices and language.”

“A key finding to arise from this study was that Indigenous people who use drugs were nearly half as likely to disclose their drug use compared to their non-Indigenous counterparts. While many Indigenous communities in Canada are resurging, despite ongoing colonialism, prior research and reports have identified that Indigenous people continue to experience inequities in healthcare access, quality and safety compared to non-Indigenous Canadians.”

A history of hostility toward Indigenous people

Commenting on the origin of bias toward Indigenous people and the negative experiences that they have had within the healthcare system, the researchers made the following statement:

“These experiences arise from the ongoing legacy of colonialism, deeply rooted institutionalized racism, entrenched poverty, social exclusion, interpersonal discrimination, and inequitable social policies and practices that unfairly disadvantage Indigenous peoples in Canada and elsewhere. For example, one of the most egregious sources of health care provider mistrust among Indigenous people today can be traced back to the legacy of ‘Indian Hospitals’ and medical experiments conducted on Indigenous children—funded by the Canadian Government and administered by physicians—from the late 1800s to the 1980s.”

Improving cultural safety for Indigenous people

The researchers stated that systemic change is needed within the healthcare system to better serve and protect Indigenous people. They gave the following example:

“On a practical level, it requires organizations/systems to embed cultural safety into organizational accountabilities, including systematic monitoring of inequities, required trainings and professional development related to cultural safety, and evidence of cultural safety in practice as a requirement for accreditation and ongoing certification. A recent redesign of health care services in Vancouver's Downtown Eastside expanded training in cultural humility and trauma-informed practice for health care providers and introduced Indigenous Elders into newly formed integrated health care teams at three community health centres targeted to people who use drugs. Our findings suggest that Indigenous people who use drugs may greatly benefit from these programs being more broadly accessible in outpatient health care services.”

Bear in mind

The present study is an important step forward in helping to build a fairer healthcare system. Like all studies, it was imperfect, with the following issues:

  • It was cross-sectional in nature; that is, it was based on data collected at one point in time.
  • Rates of disclosure of substance use may have been higher if the researchers had asked about all of the healthcare providers accessed by participants in the past six months rather than only the main healthcare provider.
  • The questionnaire did not help distinguish between partial disclosure and full disclosure of substance use.
  • The researchers stated that the non-disclosure of substance use may have “far-reaching negative impacts on quality of care that were not measured.”
  • Research with other ethno-cultural groups needs to be done in other settings to assess if the issues in Vancouver around non-disclosure are similar or different and to find appropriate remedies.

—Sean R. Hosein

Resources

BC Centre for Excellence on HIV/AIDS

BC Centre on Substance Use

First Nations Health Authority – Research and Knowledge Exchange

Indigenous-centred approaches to harm reduction and hepatitis C programs

Indigenous-centred approaches to harm reduction, HIV and hepatitis C: Part 1

Indigenous-centred approaches to harm reduction, HIV and hepatitis C: Part 2

REFERENCE:

Pearce LA, Homayra F, Dale LM, et al. Non-disclosure of drug use in outpatient health care settings: Findings from a prospective cohort study in Vancouver, Canada. International Journal of Drug Policy. 2020; in press.