Wallace et al. International Journal for Equity in Health
https://doi.org/10.1186/s12939-021-01394-6
(2021) 20:53
RESEARCH
Open Access
Towards health equity for people
experiencing chronic pain and social
marginalization
Bruce Wallace1,2*, Colleen Varcoe3, Cindy Holmes1, Mehmoona Moosa-Mitha1, Gregg Moor4, Maria Hudspith4 and
Kenneth D. Craig5
Abstract
Objective: For people who experience social inequities and structural violence, pain and related care are inexorably
linked to experiences of injustice and stigma. The purpose of this study was to examine in greater depth the
experiences of pain and discrimination and stigma across diverse marginalized communities in order to
recommend equity-oriented healthcare approaches.
Methods: This community-based qualitative study reports on four focus groups that included 36 people living with
pain. All participants identified with one of three groups known to experience high levels of inequities and
structural violence including an Indigenous group, a LGBTQ2S group, and two newcomer and refugee groups.
Results: Pain was entangled with and shaped by: social locations and identities, experiences of violence, trauma
and related mental health issues, experiences of discrimination, stigma and dismissal, experiences of inadequate
and ineffective health care, and the impacts of these intersecting experiences.
Conclusions: Equity-oriented responses to chronic pain would recognize pain not only as a biomedical issue but as
a social justice issue. The EQUIP Framework is an approach to integrating trauma- and violence-informed care;
culturally-safe care; and harm reduction in health care that may hold promise for being tailored to people
experiencing pain and social marginalization.
Keywords: Chronic pain, Health equity, Social marginalization, Structural violence, Community‐based participatory
research (CBPR), Indigenous, LGBTQ2S, Refugee
Introduction
Chronic pain is a major public health challenge, as
reflected in widespread prevalence, seriously debilitating
impact, and resistance to existing treatments [1, 2]. The
biopsychosocial conceptual approach is widely endorsed
in medicine and provides a guiding framework for understanding pain [3, 4], but there are disproportionate
* Correspondence: [email protected]
1
School of Social Work, University of Victoria, PO Box 1700, STN CSC, BC,
Victoria, Canada
2
Canadian Institute for Substance Use Research (CISUR), P.O. Box 1700, STN
CSC, BC V8W 2Y2 Victoria, Canada
Full list of author information is available at the end of the article
emphases in application of components of the model,
with everyday treatment firmly focused on biomedical
care, despite substantial evidence for the efficacy of psychosocial interventions [5]. Social parameters governing
access and delivery of care receive relatively little attention and remain poorly understood.
The importance of the social context for understanding and treatment of chronic pain is revealed in recent
findings indicating that persistent pain is often poorly
recognized [6–8], under-estimated [9–11], and inadequately managed [12, 13] in the general population.
This is accentuated by substantial disparities in care
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Wallace et al. International Journal for Equity in Health
(2021) 20:53
across population groups – particularly in marginalized
populations who are more likely to be compelled to live
with pain and pain that is of greater severity [1, 14]. This
contrasts unfavorably with declarations that pain management is a fundamental human right even tough inequities and injustices are identified as the greatest
challenges to responding to pain globally [15]. Thus,
there is value in theoretical models of pain that attend
to social determinants of pain [16–19].
Central to understanding the limited care options available to people experiencing chronic pain is evidence that
chronic pain is associated with social stigmas and discrimination [19]. This intersects with multiple stigmas related
to race and ethnicity, class, gender, sexual orientation,
mental health, and substance use, among other forms
[16–19]. Thus, chronic pain becomes more than a health
issue—it should be viewed as an issue of equity and justice
associated with social contexts of discrimination and
structural violence [20], reflective of the way in which societies are organized to create harm and maintain racism,
poverty, and other disadvantages [21]. While physical
trauma in the form of injury and surgical interventions
represents the major cause of pain, social trauma resulting
from experiences and impacts of racism and colonization
[22, 23], the stigma and lack of responses for mental
health issues [24], misogyny and intimate partner violence
[25], the current drug overdose public health crisis [26]
[27], and the ongoing crises of homelessness and poverty
[28], among other challenges, contribute substantially to
experiences of living with pain. Therefore, paying attention to the social determinants of pain is crucial to realizing a more just, equitable, and healthy society.
While it is recognized that “emotionally difficult experiences, including trauma, interpersonal conflicts, work
stress, and social rejection, contribute to chronic pain”
[29, 30] (p. 565), the systemic and structural nature of
these are not well understood [31], and research is only
beginning to be conducted with socially marginalized
groups. For example, the unique mechanisms whereby
systemic racism becomes manifest in painful experiences
and how it influences the treatment of chronic pain is
not well studied. In the context of low back pain, Ziadni
et al. [29] found pain-related appraisals of injustices mediating these relationships, with prior experiences of racial discrimination positively associated with severity of
disability and depressive symptoms. Perceived injustices
have also predicted more chronic self-reported experiences of depression and disability outcomes in people
with chronic low back pain [32]. Experiences of pain
were linked to practices of discrimination and injustice
and as these increased, individuals’ perceptions deepened
regarding the irreparability of the pain they were encountering and their sense of unfairness related to their
experiences of care [29].
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Practices of injustice and unfairness can have negative
impacts on overall health, with these adverse impacts
amplified for people living with chronic pain who may
increasingly perceive the care inequities they encounter
and the pain they face as reflecting excessive social scrutiny, social judgement, and a form of punishment [33].
Moreover, while previous research has acknowledged
systemic inequities in the distribution of pain and pain
management, programmatic responses to these inequities in the form of improved access to interventions have
been minimal and are understudied [22, 32]. While
health inequities, including those associated with chronic
pain, are well documented and calls for equity are commonplace, there is a lack of engagement and research in
exploring how to address inequities within healthcare
responses.
The purpose of this study was to provide first person
accounts of the relationship between experiences of pain
and discrimination and stigma, thereby informing
equity-oriented responses to chronic pain tailored to
people
experiencing
both
pain
and
social
marginalization. To study the relationship between
chronic pain and diverse experiences of social
marginalization as well as implications for interventions,
we conducted a community-based qualitative study
using focus groups with people living with chronic pain
and identifying with one of three groups known to experience high levels of inequity, discrimination, and
stigma in Canada, specifically Indigenous1[34, 35],
LGBTQ2S2 [36] and refugees or newcomers [34].
We employ a health equity framework to investigate
the links among the complexities of inequities, social
marginalization, and structural violence to inform
equity-oriented responses to chronic pain. Namely, the
EQUIP Health Care program of research [37–40] informs the theoretical framework for this inquiry as well
as the analytical processes. EQUIP offers an evidencebased theoretical framework that describes equityoriented health care (EOHC) as enacting three key dimensions: trauma- and violence-informed care,
culturally-safe care, and harm reduction, each of which
must be tailored to the particular health care context
and populations served [37]. EOHC aims to reduce the
effects of structural inequities by analyzing inequities
and their impact, and augmenting and providing alternatives to dominant approaches to care [38]. This analysis
aims to provide direction for tailoring EOHC for those
who experienced chronic pain and health inequities.
1
In Canada, Indigenous people include diverse First Nations, Inuit and
Metis peoples. Royal Commission on Aboriginal Peoples. (1996).
Report of the Royal Commission on Aboriginal Peoples. Ottawa: Canada
Communications Group-Publishing).
2
Lesbian, Gay, Bisexual, Transgender, Transsexual, Queer,
Questioning and Two-Spirit (LGBTQ2S).
Wallace et al. International Journal for Equity in Health
(2021) 20:53
Methods
The research was guided by the principles of
community-based participatory research (CBPR), an
approach that engages communities equitably in the research process for the purpose of producing knowledge
and taking action for positive change [41, 42]. The research was initiated by Pain BC, a province-wide, nongovernmental organization that brings together people
in pain, their families, health care providers, and others
to improve the lives of people living with chronic pain in
British Columbia (BC) Canada and beyond. Pain BC
identified the need to develop contextually tailored responses to chronic pain for populations in BC also experiencing social marginalization.
Throughout the project, Pain BC played a lead role in
the research processes and, as the principal knowledge
user, is using the evidence to inform their current and
future programming. The research team includes
community-based researchers with unique, often longstanding, relationships with the communities experiencing social marginalization. The researchers collaborated
with not-for-profit organizations in these communities
to recruit participants: an Indigenous community health
centre in one community, a resettlement and newcomer
agency in another, and a network of agencies and contacts dedicated to LGBTQ2S communities.
Focus groups were utilized as a data collection approach
that holds the potential for in-depth exploration of issues
through shared discussion and understandings. With the
CBPR approach, the gathering of individuals with shared
experiences also offers the potential of creating community connections, building capacity about an issue and a
foundation for further participation and action.
The overall sampling approach was convenience sampling via third-party recruitment with strategies modified
to best fit the community interests and processes, as well
as outreach from the collaborating community organisations who linked interested participants with the researchers. Recruitment handouts were distributed by the
collaborating agencies to people accessing their sites and
services. Participant criteria included being an adult
(over 18 years), identifying as experiencing chronic pain
for three months or longer and identifying as a member
of the population group being gathered (Indigenous,
LGBTQ2S, or refugees and newcomers). An honorarium
of $50 (CAD) was provided to each participant. Collaborating agencies continued recruiting until the handbill
had reached those who might be interested and a
number of people sufficient for a group (between six
and fifteen, given our aim of 6–8 people per group and
potential for two groups in each setting), had expressed
interest in participating.
Four focus groups were held with a total of 36 participants, with the initial group conducted in December
Page 3 of 13
2018 and the final group in March 2019. The Indigenous
group and the LGBTQ2S group each had 11 participants, one newcomer and refugee group had six participants, while a second group was organized with 8
refugees from Syria, facilitated in Arabic and translated
to English. The research team decided to not include a
demographic survey as part of data collection as we considered using predetermined categories antithetical to
CBPR processes and our intersectional perspective. Rather, each group began with each individual introducing
themselves as they wished, which often resulted in participants presenting their complex selves and identities
more fully than a demographic survey might have
elicited.
Within the focus groups, we sought to create a culturally safe social opportunity with the sharing of a meal
that included moose stew with the Indigenous group,
Persian catering with the newcomer and refugee group
and the LGBTQ2S group had lunch from a queer-based
caterer in the community. The researchers worked to reduce barriers to participation and to respond to diverse
access needs for people living with chronic pain including low lighting, supportive seating, specific dietary requirements and the presence of translators. The focus
groups typically exceeded an hour with the meal and socializing being close to another hour.
The focus groups were facilitated by the researchers or
co-facilitated with a community member including an
Indigenous Elder with the Indigenous group and a settlement worker with the newcomer and refugee group. At
the start of the group, consent forms were explained,
notably we clarified how consent and confidentiality
functions within group discussions. Following opportunities for any questions to be discussed, the consent forms
were signed and collected. The same semi-structured
interview guide was utilized in all groups to explore
three general areas: (a) participants’ experiences of barriers (both external/systemic and personal) in managing
their chronic pain, (b) what participants found helped
them deal with their pain, and (c) participants’ insights
on what could be improved to provide better health
care. The group discussions were audio recorded and
then transcribed. Ethical approval for the project was
granted from the University of British Columbia Behavioural Research Ethics Board (H18-01481).
Data analysis was a thematic analysis guided by coding
techniques from grounded theory [43] with transcripts
analysed by the research team, including Pain BC research collaborators, using an iterative process that
made use of both deductive and inductive processes. To
be inclusive of collaborators the coding was conducted
in our word processing programs using coloured
highlighting and comments rather than using qualitative
software. An initial deductive analysis was conducted
Wallace et al. International Journal for Equity in Health
(2021) 20:53
using a priori categories based on the EQUIP framework: These themes were trauma and violence informed
care, culturally safe care, harm reduction, and contextually tailored care [39]. Second, themes were identified
inductively from within and across all focus groups.
Following this process, the team brought together both
inductively and deductively derived themes to develop
an analytic framework as described by Corbin and
Strauss [44]. A subsequent round of coding was conducted using the analytic framework. The research team
once again discussed the themes as a group and collaboratively developed a more detailed thematic analysis
that identified overarching themes and sub-themes
within and across groups.
Within a month of the final focus group, a one-day
workshop was held with an objective of sharing the
initial thematic analysis with stakeholders who included two or three participants from each focus
group, Pain BC, the research team, and a small number of key chronic pain healthcare providers and
policy makers. This feedback process provided an
additional analytical step as research participants and
other stakeholders provided reactions to the findings,
including their analyses of what was presented. From
this step, the research team met again to refine and
finalize the analytical framework and reanalyze the
full transcripts.
Results
The purpose of this study was to examine in greater
depth the experiences of pain and discrimination and
stigma across diverse marginalized communities in
order to recommend equity-oriented healthcare approaches. The data suggests that participants’ experiences of pain were entangled with and shaped by five
key interrelated areas: their social locations, identities
and related barriers they faced; their experiences of
violence, trauma and related mental health issues;
their experiences of discrimination, stigma and dismissal; their experiences of inadequate and ineffective
health care; and the impacts of these intersecting experiences, specifically on employment, income, and
their social lives.
Pain was shaped by and entwined with participants’
social locations and identities and related barriers
These diverse groups of people were brought together
because of a single aspect of their social location: identifying as LGBTQ2S, identifying as Indigenous, or being a
newcomer or refugee to Canada. While participants
identified the ways in which they aligned with the group
to which they had been invited (e.g., most newcomers
specified from which country they had immigrated), they
also often offered multiple dimensions of their social
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locations and related identities extended beyond the
group they had been invited to represent. Indeed, some
participants also identified with one or both of the other
groups: a transwoman participated in the Indigenous
focus group; several Indigenous persons participated in
the LGBTQ2S focus group and so on. Notably, the Indigenous Talking Circle was guided by a protocol for introductions, and although it is common practice within
such protocol to name one’s clan, community, territory,
or nation, most of the Indigenous participants primarily
stated their relationship to pain in their introduction.
This was unusual, perhaps in part explained by the fact
that the focus group facilitators (a local Indigenous
Elder, and a researcher) were familiar to most and had
introduced themselves formally on other occasions. Also
notably, no participants in the refugee and newcomer
groups shared aspects of their gender identity or sexual
orientation perhaps in part because in many of the cultures of which the newcomer participants were representative, terms such as ‘gay’ or ‘trans’ may not be part of
the cultural vocabulary, even when people align with
those identities [45].
Across these diverse groups, participants expressed the
complexity of identity and social location, and the complex relationships among them.
I’m trans, I’m non-binary, I’m Jewish, I’m a singer,
I’m going through transition right now and that’s
something that’s been on my mind a lot is that my
voice is changing and I’ve been grieving my singing
voice a little bit so just thinking about that before I
got here today (LGBTQ2S-1-1).
For some, pain, and disability rights were part of their
described identity. “I identify as queer and non-binary
and I also identify as a crip, sick, and disabled”
(LGBTQ2S 1–6). Indeed, as noted, most of the Indigenous participants opened with a declaration of their long
history of pain. “My name is M and I’ve been living with
chronic back pain since 1990” (Indigenous 9).
Perceived identity and social location were described
by many as acting as threats to safety and as barriers to
pain treatment and support. LGBTQ2S 1–6 went on to
say “I’ve had a lot of interactions with the healthcare system and I’ve definitely come across times where there
weren’t resources that really reflected who I was”. Another said:
As an Indigenous person I always feel like the
health, in totality, the healthcare system is a barrier
to me. There’s always a risk of – I always feel, I have
to measure if there’s a threat against my body or
even my family just because somebody could make
a racist assumption about me. (LGBTQ2S 1–10)
Wallace et al. International Journal for Equity in Health
(2021) 20:53
Specific identities or social locations were associated
with unique barriers to treatment and support, including
specific threats to safety such as accessing genderaffirming care.
I am gender fluid, looking at taking testosterone
and I’m curious about, broaching that with my doctor who’s already very binary focused and in tandem
with all of the mysterious things that cause pain and
mental health issues… and then the layer of just
very much like not knowing if I’m safe, being seen
or willing to be asked to be seen or whatever is a
barrier as well (LGBTQ2S 1–7).
Participant’s social locations and identities were directly associated with specific structural barriers. For example, Indigenous participants’ access to services varied
according to whether or not they had status3 under the
Indian Act.
When I say I’m Native I have to say non-status. I
have to actually specify that, that I’m non-status because… my biological father is not on my birth certificate. I’m actually persecuted by both sides, by the
Native side and the Canadian, white Canadians.
And I kinda get thrown around by both of them because I’m not either one. (LGBTQ2S 1–11)
Similarly, newcomers’ experiences varied with their
status governed by legislation related to immigrants and
refugees and the associated benefits to which they were
variously entitled, with ‘undocumented’ newcomers having no access to healthcare. More generally many newcomers cited the high cost of health care as another
structural impediment to accessing care. Newcomers
without strong English skills described difficulty in even
describing their health issues and pain, particularly given
that many health care settings do not provide access to
interpreters, with consequent under treatment, delayed
treatment, mistreatment and emotional impact.
Emotionally it’s very hard when you can’t, when the
services can’t understand you and doctors don’t
understand you… (Newcomer 2 − 1).
The social identity status of being a refugee newcomer
with its attendant consequences of social isolation was
also identified as a cause for the advent of chronic pain.
3
Indian status is the legal status of a person who is registered as an
Indian under the Indian Act 46.Act I. Indian Act, RSC 1985, c I-5.
1876.. The Indian Act is a race-based act of legislation that categorized
Indigenous persons and governed all aspects of their lives, and remains
in force today, with a few revisions since 1885.
Page 5 of 13
She says before she [came to Canada], when she was
in [her country of birth] she never feel anything, she was
relaxed enjoying social life, meeting each other occasionally or meeting family, friends, whatever, go to church,
go to mosque, whatever, she never feel that. But since
she came here all the pain start to come out. (Translator
for Newcomer FG2)
Pain was shaped by violence, trauma and related mental
health issues
Aside from social marginalization due to their identity
locations, in all groups many associated their chronic
pain with personal experiences of trauma and related
mental health issues.
I’m a refugee … from [place]. I went through so
many difficult things. I was raped and kicked, I was
being kicked with boots, soldiers were kicking me
with their boots, I don’t know how my life came to
be so broken down. After that I had no peace. I
came here, I was happy that I’m here…I thought
again I’m going to experience joy, happiness but it’s
not easy. I’m going to hospital, just to the hospital
and I thought my kids were going to move and
come and stay with me in this country. My kids
never moved and follow me. My head is not working, I have high blood pressure, most of the time
the pressure will go up to two fifty, three hundred.
I’m taking drugs but the pressure does not come
down. And the pain, I’m telling you… All night I’m
walking (pacing) in the house while others are
sleeping and I’m awake. Then I sleep in the daytime
and we are supposed to live as a family and do
chores and other things that means we are living as
a family, but I can’t because I have not slept all
night. (Newcomer 1–6)
A participant from the LGBTQ2S community also
shared the following:
I live with chronic pain and had pain probably my
whole life and diagnosed with learning disabilities,
as well as chronic mental illness and trauma, so all
those kind of go together. (LGBTQ2S 1–4)
Yet another participant identified trauma and mental
health as closely related to their experiences of pain:
..in addition to like um physical kind of pain stuff,
like mental health struggles and complex PTSD and
trauma is something I’ve lived with most of my life
as well and I think it’s been like a big source or like
really important in my um, my resulting chronic
pain. (LGBTQ2S 1-NS)
Wallace et al. International Journal for Equity in Health
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Pain, discrimination, stigma and dismissal
Along with systemic barriers to accessing health care
as described in the first theme above, discrimination,
stigma and experiences of having their concerns
dismissed by health care workers was identified as a
significant and common experience across all participant groups. The participants’ experiences of pain
were described in ways that were inseparable from
their experiences of discrimination, stigma, and dismissal. As suggested earlier, throughout the focus
group, and during the one-day workshop, many in
the LGBTQ2S group described how cisnormativity
and heteronormativity that pervades multiple systems
influenced their experiences, and thus the meaning of
pain.
…I wanted to share…about being a student and being at post-secondary institutions and experiences
like working with the disability resource centres on
campuses that I’ve been at and with various professors and others that are above [laughs] me as a
student. And also in combination with my fibromyalgia, which is chronic and constant kind of pain
but also having PMS and menstrual issues combined with the gender identity stuff makes just a
whole other mixed bag of things to limit you in sort
of access to education and to acceptance, yeah.
(LGBTQ2S -NS)
All of the Indigenous participants described experiencing race-based discrimination, with most describing
being constructed as “drug seeking” by health care
workers, regardless of whether they wanted medication
or not.
Well I used to use drugs…I don’t do that anymore.
I’m on methadone now and I’m in recovery, so.
But…because I’m on so much methadone… it’s hard
for me to manage my pain…when I do go to the
hospital and stuff, they look up my past history and
my drug life, and …they always bring that up. It’s always like, they won’t give me the medications that I
should be getting because they think I’m drug seeking. (Indigenous 1).
Participants described how such assumptions were interrelated with their experiences of not being believed
which in turn deterred them from seeking and getting
care:
For me, I’m having a hard time to ask for help to
any doctors because of how they treat me, like
[they] say I just want to get pain medication just to
get high and all that, and I’m really in pain and I’m
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telling them and they don’t believe me and that, and
I’m having a really hard time right now. It is hard
for me to ask because of all the things I went
through with the doctors and that. They treat me
like…I’m just after the drugs to get high and that.
They don’t believe me, that I’m in pain. I’m trying
really hard to ask for help and it’s really hard for me
to ask for help because of how I was treated before.
(Indigenous 3)
These experiences of discrimination, stigma and dismissal were entwined with participants’ experiences of
inadequate and ineffective health care, together shaping their understanding, experiences, and meanings of
pain.
Inadequate and ineffective health care
Overwhelmingly, most participants described being unable to find effective pain management.
Nothing has been working for pain management.
I’ve tried massaging, I’ve tried IMS, I’ve tried acupuncture, I tried medicinal marijuana, I’ve tried
like stronger medication, I’ve tried street stuff
and nothing is making it any better. (LGBTQ2S
1–9)
I was finally diagnosed with osteoarthritis in two
places in my foot and I’m presently waiting now
to see the orthopedic surgeon, which … is going
to be another year or year and a half before I’m
getting some help there. At least now I’m getting treatment, like I have physio every Monday,
I have Voltaren cream that I can put on my feet;
whereas for six years, no physio, no cream, no
pain medication. It just kept escalating and escalating. And I think part of the reason why it is
as bad as it is now, is because there was nothing
for six years. No physio, no suggested anything
for it; just waiting for the next doctor. (Indigenous 7)
Most were only able to access pharmaceuticals and
many in each group described this as very limited and
problematic.
Finally, they put me on 2 mg of Dilaudid twice a
day, once in the morning and once in the afternoon,
and they told me I could go on 1 mg four times a
day, and it was like wow, yeah, okay [sarcasm]. So, I
take several different painkillers, but I don’t want to
be on medication; I want solutions. I want to be
fixed. (Indigenous 6)
Wallace et al. International Journal for Equity in Health
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A participant from another group attested to a similar
experience:
…like pharmaceuticals don’t really work for me and
like in my experience like very few practitioners are
willing to talk about any other options and are willing to work with like other types of practitioners
(LGBTQTS).
This was reiterated by a participant from the refugee
newcomer group:
I go to complain to the doctor and he give me
sleeping pills and I say, no, I don’t want to do that,
it control me. And he always give me, give me the
prescription, prescription all the time but he don’t
give me the specialist doctor. (Newcomer 1–3)
As described earlier, participants recounted being disbelieved regarding the existence of pain, their level of
pain and the cause of their pain, and dismissed regarding
their concerns, needs and preferences, leading to ineffective health care. In each group several participants described how the impact of being disbelieved and
dismissed had led to misdiagnoses and mistreatment.
Pain. I honestly don’t know what it’s like to live
without pain. I had back surgery a long time ago…
They wanted to put those rods in my back and I
told them natives tend to reject those rods, so I
don’t want to go through that. They wouldn’t listen
to me. Well, at the fourth month after having them
in me… I started feeling my body was rejecting the
steel. I went in and I told them and they did not listen to me. They said that it was in my head, that …I
was trying to get drugs. …at the year mark of them
being in my body, I was rushed to emergency in
[another community]… they had to open me up as
soon as I got in there and there was steel and pus
and everything, like large amounts… For somebody
to have two big jugs of liquid pus come out of them,
there has got to be something that can be done before this, and where they had those bolts, it broke
the bones, it ate the bones. So, I’ve got nine bones
in my body that are gone because of this one doctor
… He crippled me. (Indigenous 4)
A newcomer described a six-year quest for treatment
of pain. She described being dismissed repeatedly by
physicians in primary care, and not believed by other
healthcare providers.
So, I told myself I need to go to emergency not
[a] walk in clinic because it will take me a long
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time. So, when I went there, I told them that I
have strong headache and I show them the place
exactly the place. And I told them that I need, I
need help because I can’t help all these pain. The
doctor he didn’t believe me at first, he told me
you just have a migraine…I told him, no, it’s not
that, I feel something in my brain it push my
brain away. But he didn’t believe that, he like I
felt he’s just feels that I am like acting like I
am….
R: You are faking it?
P: Yeah and my husband told him can you please
do a CT scan, something better to, to know what
she has. Like when they do the CT scan they found
the tumor that took all the right side. (Newcomer
2–3)
Many experienced difficulty knowing what to do and
navigating the system, reflecting how systems are not organized in ways that are tailored to needs. One newcomer described:
My doctor, after taking x-rays and, yeah, trying
to figure out what it was- the first thing the
doctor says is “go to a physiotherapist” and then
you do that. But you have to choose the physiotherapist, you have to find out which one would
be better for you and where to go – you have to
do all the research. It’s not that they say, okay,
this physiotherapist works with me, this doctor,
and I know this one is better for this arm and
this one is good for the knee, no, they don’t give
you zero, nothing. And you have to do the
research, you have to figure it out… (Newcomer
1–3).
The inadequacies of health care shaped the meanings
of pain for participants and worked to deter access to
care, and to worsen the impact of pain.
…every time I go to a new practitioner I have to
like tell them my whole like life story all over
again. And it’s like really exhausting…it’s like I
have to be really vulnerable and if they’re not
trauma-informed it’s just an awful experience, to
be that vulnerable they’re kind of just like seeing
things through a certain lens and, yeah, I don’t
feel believed or like I’m going to get, like the options they present aren’t going to be like what
I’m looking for. (LGBTQTS)
Wallace et al. International Journal for Equity in Health
(2021) 20:53
The impact of chronic pain: Complex and multifaceted
Participants described the effects of chronic pain in ways
that demonstrated how the experience and impacts of
pain emerged from the complex intersections among the
emotional, mental, physical, social and economic dimensions of their lives as they endured the consequences of
multiple forms of stigma and discrimination and structural barriers across systems. However, participants also
exhibited resilience and worked to navigate significant
systemic barriers to adequate care. For example, one
newcomer continued her quest to improve her English
in order to deal with a cascade of events stemming from
inadequate interpretation.
…it’s a very hard way because the government they
took away my kids – fifteen years I have no kids,
once a year, one hour, they only let me visit my
kids, it’s hard. And it’s because of how the interpreter translated, all I said when I was at the psychiatrist office is that my life is so hard that it looks
like it’s better if I die. But that does not mean I
wanted to kill myself, I was just trying to say that
my life was so hard that’s all. Life not easy for me,
die better than to live. But the interpreter they say I
want to kill myself … and after they took me, put
me in an asylum for four years. They destroyed my
life, I’m so upset and I say I’m not crazy, I’m normal, I’m not crazy and I don’t want to go there, but
they put me in and gave me a lot of pills, a whole
bunch, and they put me in and that’s why I’m very
upset. And I said, no, I stop to go to counsellor, I
stop going to anything and I say, no way, until when
I can speak by myself (in good English) okay? (Newcomer 1–8)
Specifically, across groups, participants emphasized
impacts of the intersections of pain and barriers to support on their mental health, employment, income, and
their social relationships:
I come from my country, I run away from the war, I
came here but now see…. I just want to be human, I
want to be like normal people. I don’t want to be
like people who stay inside the home feeling scary,
scary all the time. (Newcomer 1–5)
…my experience of living with chronic migraine is
the most limiting of the things that I live with and
it’s caused really intense social isolation which isn’t
the greatest for my mental health. (LGBTQ2S 1–8)
The effects on employment included enduring additional pain during work, the challenges of fulfilling work
Page 8 of 13
expectations, and for many, being unable to get or continue working.
I have been in pain for well over 20 years so I’ve
kind of learned to just grit my teeth and cope kind
of thing. I was working. My job was really, really important to me [sigh]. So, I went from working eight
hours a day down to six hours, down to five hours,
to four hours, and I had to leave my job about three
weeks ago because I just, I couldn’t even get in a
two-hour shift anymore. (Indigenous 6)
I do nails as a job but now I can’t hold the hand to
do nails, so I have to stay home. I can’t work (Newcomer 1–3).
…in relation to chronic pain I’ve been [a specific
service provider] and actually just had to, at the end
of last year, had to give up my license because I
can’t afford to carry on that profession anymore.
(LGBTQ2S 1–8)
The economic impact was profound across the groups,
both as a consequence of the impact on employment,
and as a consequence of the costs of support and
treatment.
I’ve had pain since childhood. I became a lot more
disabled by it in my early twenties and have been
going to school, in quotation marks, part-time to
survive, because I can’t work and now I can’t go to
school. (LGBTQ2S 1–7)
Many simply could not afford treatment, even when
they found modalities that were effective. A newcomer
who had debilitating pain post surgery and chemotherapy for a brain tumour had to stop accessing treatment;
the situation was exacerbated because they did not have
proper documentation to stay in the country and therefore were not eligible for health care benefits. “…it was
paid from, from me and I just didn’t have any more
money and I had to stop going”. (Newcomer 1–2).
I had a referral to the podiatrist…so I go to make an
appointment and everything and then the podiatrist
says you have to pay $50 up front …I’m like what?
I’m on disability, plus I have status. So, the lady at
the reception…said well you can get a form filled
out from the Ministry to get it paid for. So I go
through all the trouble to get that done, call to book
an appointment telling them that I have the form
filled out so the Ministry can pay for it, well you
Wallace et al. International Journal for Equity in Health
(2021) 20:53
have to still come, bring $35 cash to pay for the filing fee…So I never did see the podiatrist because it
just wasn’t affordable. (Indigenous 6)
Participants’ experiences of chronic pain were described in relation to others, including family and community members, both in terms of how others
influenced their experiences and how their chronic pain
affected others.
I’ve spent more than half of my life being in severe
pain. I’ve had fibromyalgia for 26 years and I had to
relocate because of it. When we lived in (another
community) I spent a lot of time in the hospital. My
marriage ended because of my health problems. I
had a very spoiled husband who for the first four
years of our marriage came home and his dinner
was made, he didn’t have to lift a finger to help, and
then when I got sick he had a hard time with it.
(Indigenous 6)
Many (mostly women) were caregivers. For example,
one newcomer described the impact of caring for her
daughter, and how pain in turn affected her caregiving
and their wellbeing:
I have a little girl in a wheelchair and she doesn’t
walk, is non-verbal. She’s not such a little girl and
she’s getting heavy. This has been going on and on
and on for so many years – she’s fourteen. So, it’s
many years of lifting but now instead of being both
sides of my body now I was completely restricted in
one and its really damaged… And the stress from
[paying for treatment] and the stress of having to
spend more money on my daughter than me because you always put others first. (Newcomer, 1–1)
Another woman was at a loss regarding how to manage in the face of her inability to work, her debilitating
pain and the need to care for her children on her own.
I’m stuck and I’m stuck and that’s why I try. I try to
go to school (for upgrading skills) but I cannot go
to school because I have three children. I’m a single
mum with three children …I ran away from [an
abusive husband] that’s why I have to be careful for
my children (Newcomer 1–5).
Discussion
The purpose of this study was to examine in greater
depth the experiences of pain and discrimination and
stigma across diverse marginalized communities to inform and tailor equity-oriented responses to chronic
pain so that people receive respectful, just, and effective
Page 9 of 13
care. Through these focus groups we heard how the experience of pain for people who face systemic inequities
and injustices emerges from the complex intersections
of the broader social environment. Chronic pain is as
much a social issue as it is a health issue. For participants in the study groups, social locations engendered
specific forms of social inequities, dismissal, discrimination and stigma which shaped their experiences and
meanings of pain. People described experiencing harms
on the basis of their social identities by health care professionals and others in the community. Overall, participants’ experiences of pain were deeply informed by a
composite of experiences that included discrimination,
stigma, dismissal and social and economic disadvantage
as well as experiences of trauma. They reported “not being listened to nor believed” by care professionals and
others and “violated” by the stigmatization, stereotyping,
racism, sexism, heterosexism, cisnormativity, and transphobia they faced in the health care system [18]. These
experiences of injustice were compounded by poverty
and inadequate access to supports and resources.
Treatment of pain was particularly defined by multiple
and intersecting forms of systemic violence and
discrimination.
Thus, participants’ pain was shaped by others, particularly health care providers and broad social systems
related to health care, housing, immigration and income, and people’s positions within those systems. Fortunately, there is increasing attention being paid to the
impact of privilege and disadvantage on experiences of
pain and access to care, for example, in terms of race
[23], sexual orientation [46] and gender [40]. In particular, we identify the deleterious impact of care provider actions that the participants experienced as unjust
and unfair. When compared with non-minority counterparts, pain-related injustice appraisals are elevated
among those who identify with marginalized minority
racial/ethnic groups and among individuals with fewer
socioeconomic resources [32, 47].
Here we review the findings from the perspective of
the Equip Health Care framework in our pursuit to
inform equity-oriented care responses to chronic pain
for people facing health inequities. We utilize the
framework by discussing the findings according to the
EQUIP framework’s three key dimensions: traumaand violence-informed care, culturally-safe care, and
harm reduction, each of which must be contextually
tailored [37].
Analysis of the impact of these key dimensions [48]
suggests their potential for explicit adaption to enhance
equity oriented responses to chronic pain. In this investigation, these key dimensions were studied in primary
care clinics serving highly marginalized populations.
Chronic pain was measured using von Korff’s 7-item
Wallace et al. International Journal for Equity in Health
(2021) 20:53
chronic pain scale [49], assessing pain disability in the
past 6 months. The project introduced a new measure of
equity‐oriented health care: the Equity‐Oriented Health
Care Scale (E‐HoCS). Using longitudinal data from a cohort of 395 patients facing systematic inequities, the
study demonstrated that more equity-oriented health
care predicted better health outcomes over time, as such
care was associated with higher levels of patient comfort
with their providers as well as confidence in their ability
to manage and prevent health problems including
chronic pain [48]. Equity-oriented care predicted less
disabling chronic pain as well as better quality of life and
fewer depressive and trauma symptoms [48]. Further, an
intervention integrating these key dimensions in primary
care was able to increase staff confidence and comfort in
providing such care [38]. Hence, this approach may be
useful to promote equity-oriented care in relation to
pain, and support people facing the greatest stigma, discrimination, and structural barriers toward improved
outcomes.
Contextually tailored care customizes the three key
dimensions of equity-oriented care to ensure responses
are suitable to the populations served and local contexts
[38, 50–52]. Although described separately, the three dimensions are interconnected in practice and need to be
tailored to each particular context: in this case, people
experiencing chronic pain and multiple intersecting
forms of social marginalization. The objective is to provide responses beyond the individually focused concept
of patient-centered care to orient and adapt services,
policies and practices to be optimally responsive and respectful to both those being served and the local, social,
and community contexts in which care is provided.
Trauma-and-violence informed care (TVIC) expands
trauma-informed care to also be explicitly responsive to
the structural and interpersonal forms of violence that
most people affected by systemic inequities experience
[53–55] and that can be seen in our data. Providers seek
to create safe environments and foster trusting relationships that build on their awareness of the pervasiveness
of trauma and violence and its impacts on health and
well-being. Being responsive to current and past trauma
and violence includes attention to structural violence, as
well as individual and interpersonal experiences of
trauma. Providing TVIC to people living with chronic
pain includes understanding the history and context of
individuals’ lived experiences, recognizing trauma and
violence as a risk factor for pain and pain outcomes, and
adopting this strategy as a universal provision. The
building of trust and respect can begin with recognition
of one’s power as a provider and the impact that marginalised social identities can have on the meaning-making
of pain for people living with chronic pain. Pain management would include a respect for the ways that people
Page 10 of 13
cope with trauma and violence, its links to mental health
and substance use, and fostering trust by incorporating
safety within care plans.
Culturally-safe care is guided by a deep understanding of the current and historical impacts of inequitable
power relations, racism, colonization, marginalization
and criminalization of people based on race or ethnicity.
Rather than attending to differences based on race and
culture as is characteristic of most cultural sensitivity
and competence approaches, cultural safety places responsibility on care providers to create safety, including
challenging discriminatory values and assumptions. Because equity requires care according to need, then, for
example, racialized newcomers with limited official language skills would be accorded the support required to
navigate pain care systems. Because cultural safety requires addressing racism, the pernicious stereotypes directed toward Indigenous people that deter health care
access and quality [56–59] would be explicitly addressed
in relation to chronic pain. Cultural safety is also a
framework adapted to LGBTQ2S health [60] as well as
to people who use drugs [61–63], among others.
Harm reduction includes the philosophy, policies
and practices that seek to prevent the harms related to
substance use rather than reducing substance use per
se [64]. Substance use is viewed as part of society and
life, and a health issue. Harm reduction approaches
challenge policies and practices that cause unnecessary
harm including the harms of inequities, criminalization
of drugs and drug use, and refusing care to people who
use substances [65]. It is an approach that provides
pragmatic supports while avoiding judgement and expressing compassion for the dignity of each person.
Stigmatizing certain substances and people who consume them causes harm and barriers to care. Substance
use and chronic pain are linked and understanding, respecting, and responding to these links are integral to
both providing care that is respectful and to building
trust [66]. Respectful engagement avoids stigmatizing
language and mistrust of people with pain as “drug
seeking” while openly supporting individual’s own harm
reduction practices by providing harm reduction supplies and ensuring signage conveys respect rather than
zero tolerance (intolerance) [57].
These key dimensions of equity-oriented care can be
seen as more than ideals. The Equip framework seeks to
operationalize these dimensions by identifying strategies
for enhancing capacity for equity-oriented services [37].
These strategies are recognized as intersecting and flexible enough to be tailored to both local contexts as well
as for various health inequities such as chronic pain.
Overall, these strategies are relevant to support equityoriented responses at the organizational, clinical programming, and patient-provider interaction levels [37].
Wallace et al. International Journal for Equity in Health
(2021) 20:53
Organizationally, the strategies have the potential to improve the ‘fit’ between people’s needs and services, increase trust and engagement of clients, and shift from
crisis-oriented care to continuity of care [37].
While many of the strategies for equity-oriented care
are inexpensive to implement, the uptake of EOHC requires more than strategies to improve access to care.
There is a requirement to question the meaning of care
and the meanings of care held by people experiencing
inequities. How responses to chronic pain are arranged
and delivered matters to people experiencing inequities.
Providers and organizations require a foundational understanding of and commitment to equity-oriented care.
Indeed, disruption should be expected and embraced if
organizations are to shift meanings of care to more fully
reflect equity-oriented dimensions [38]. Such productive
disruption may be essential to move beyond the ongoing
measuring of inequities and well-intentioned calls for
health equity [38].
The scope of inequities in health overall and chronic
pain specifically are well established with ample recommendations to improve access and outcomes for people
who experience inequities and injustices. Further, while
the relationship between perceived injustice and chronic
pain outcomes has been acknowledged, there remains a
paucity of equity-informed interventions that explicitly
address inequity at point of care.
Building on the findings from this and other studies,
equity-oriented responses to chronic pain would establish pain not only as a health care issue but as a social
justice issue. The meanings of pain and power would be
inseparable and addressing pain would be addressing
privilege and power within system responses to pain.
Addressing pain would be inclusive of identifying and
challenging the inequities and injustices that are producing and sustaining the stigma, discrimination, powerlessness, and often violence experienced by those also
experiencing pain [27]. For example, based on their findings regarding racial differences in chronic pain experiences and outcomes, Trost et al. [32] call for systemslevel interventions that go beyond individual level interventions to address possible antecedents to elevated injustice appraisals both within medical contexts and
broader social structures.
Limitations
There are a number of limitations to this study. The
small number of participants cannot be expected to capture the full diversity among the groups represented nor
the complete range of experiences and perspectives. The
recruitment locations influenced who was able to participate. For example, the Indigenous focus group was
recruited from and held in a clinic which also houses a
methadone clinic and thus a number of participants
Page 11 of 13
reflected these lived experiences. We expect that the
study appealed to those who may have experienced the
most challenges and were most interested in discussing
these issues. At the same time, we are aware that the impacts of chronic pain limited some interested individuals
from fully participating or attending at all. Significant accommodations were necessary to reduce barriers to
participate but we were aware that some individuals regretted not being able to participate. Finally, as a
community-based research project we recognize that
community participation varied within the research
process [67] with greater inclusion in some aspects and
less participation in others.
Conclusions
This study underscores the complexity of the experiences and meanings of pain for people living with pain
and facing social disadvantages, stigma, discrimination
and structural barriers to support such as poverty, systemic racism, sexism, cisnormativity and heteronormativity that are embedded in and supported by policies
and social arrangements. This analysis emphasizes the
inadequacies of an exclusive biomedical orientation to
the understanding and treatment of pain, in particular
the over-reliance on pharmaceutical management, and
points to the need for efforts toward equity in the response to pain. Equity requires treating people according
to needs, not treating everyone the same. The specific
experiences of these participants highlight the connections among pain, mental health and substance use and
shows how stigma, discrimination and dismissal of the
meanings and experiences of people living with pain
must be tackled through change, not just by care providers, but by innovations in systemic structures. The
EQUIP Framework is an approach to integrating
trauma- and violence-informed care; culturally-safe care;
and harm reduction in health care that may hold promise for being tailored to people experiencing pain and social marginalization.
Authors’ contributions
All authors provided input into the overall conceptualization and
operationalization of this research program. BW, CV, CH, MMM performed
data collection and all authors collaborated on the analysis and
interpretation of the data. BW and CV led the development of the
manuscript with CH, MMM, GM, MH, KD providing significant contributions
to the development of the manuscript and the final submission. All authors
read and approved the final manuscript.
Funding
This study was supported by a British Columbia Michael Smith Foundation
for Health Research’s Convening and Collaborating grant and a Social
Sciences and Humanities Research Council of Canada’s Partnership Engage
grant. The funders did not contribute to the design of the study, data
collection, analysis, interpretation of data nor in writing the manuscript.
Availability of data and materials
The datasets used/or analyzed during the current study are available from
the corresponding author on reasonable request.
Wallace et al. International Journal for Equity in Health
(2021) 20:53
Ethics approval and consent to participate
Ethical approval for the project was granted from the University of British
Columbia Behavioural Research Ethics Board (H18-01481). All participants
completed an informed consent process.
Consent for publication
Not applicable.
Competing interests
The authors declare that they have no competing interests.
Author details
1
School of Social Work, University of Victoria, PO Box 1700, STN CSC, BC,
Victoria, Canada. 2Canadian Institute for Substance Use Research (CISUR), P.O.
Box 1700, STN CSC, BC V8W 2Y2 Victoria, Canada. 3School of Nursing,
University of British Columbia, T153-2211 Wesbrook Mall, BC V6T 2B5
Vancouver, Canada. 4Pain BC, 1508 W Broadway, V6J 1W8 BC Vancouver,
Canada. 5Department of Psychology, University of British Columbia, 2136
West Mall, BC V6T 1Z4 Vancouver, Canada.
Received: 23 November 2020 Accepted: 24 January 2021
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