Exploring Primary Healthcare Experiences and Interest in Mobile Technology Engagement Amongst an Urban Population Experiencing Barriers to Care

Abstract

Mobile phone–based engagement approaches provide potential platforms for improving access to primary healthcare (PHC) services for underserved populations. We held two focus groups (February 2020) with residents (n = 25) from a low-income urban neighbourhood (downtown Vancouver, Canada), to assess recent healthcare experiences and elicit interest in mobile phone–based healthcare engagement for underserved residents. Note-based analysis, guided by interpretative description, was used to explore emerging themes. Engagement in PHC was complicated by multiple, intersecting personal-level and socio-structural factors, and experiences of stigma and discrimination from care providers. Perceived inadequacy of PHC services and pervasive discrimination reported by participants indicate a significant and ongoing need to improve client–provider relationships to address unmet health needs. Mobile phone–based engagement was endorsed, highlighting phone ownership and client–provider text-messaging, facilitated by non-clinical staff such as peers, as helpful to strengthening retention and facilitating care team connection. Concerns raised included reliability, cost, and technology and language accessibility.

Keywords

socio-structural marginalization stigma primary healthcare care retention mobile phones mHealth digital health

Background

Primary healthcare (PHC), referring to first contact health services encompassing comprehensive essential care, is a fundamental component of the healthcare system essential to promoting health equity (World Health Organization, 2018). Individuals with complex health needs who experience high levels of social-structural inequities often face significant barriers accessing PHC (O'Donnell et al., 2016; World Health Organization, 2018), leading to low rates of retention and engagement in care, and sub-optimal health outcomes (Luchenski et al., 2018). When access to PHC is limited, preventable and treatable illnesses are often seen in acute emergent care settings, resulting in significantly increased health system costs and limiting continuity of care and follow-up (Parchman & Culler, 1999; Szymkowiak et al., 2017). PHC models which incorporate multidisciplinary approaches to client-centred and population-tailored care (Browne et al., 2012; O'Toole et al., 2016), including strategies such as trust-building and flexible, trauma-informed services, have been shown to improve continuity of PHC for underserved individuals (Green et al., 2016; Komaromy et al., 2018; O'Toole et al., 2016). However, such strategies have not been uniformly applied, and PHC retention remains a significant area for improvement (Luchenski et al., 2018).

The term mHealth refers to the use of mobile devices to support public health practice and health service delivery, such as mobile phones and tablets, provides an innovative platform for improving healthcare engagement (World Health Organization Global Observatory for eHealth, 2011). Mobile phone–based approaches such as text-based provider–client communication and contextually tailored smartphone applications (apps) have been shown to improve medication adherence for chronic health conditions including hypertension (Thakkar et al., 2016) and HIV (Lester et al., 2010), and increase linkage to and retention in HIV care (Campbell & Haberer, 2015). Client–provider text-messaging has also been found to improve clinic appointment attendance (Guy et al., 2012), with high client and provider acceptability in HIV care (King et al., 2017; Murray et al., 2015), latent tuberculosis infection treatment (van der Kop et al., 2013), and among structurally marginalized populations to support healthcare engagement (Jongbloed et al., 2020). While there is limited research specifically examining tech-assisted primary care retention among structurally marginalized populations, one study with homeless veterans in the United States found that text-message communication with clinic staff resulted in fewer missed and cancelled appointments, and reduced acute care visits, with high acceptability among clients (McInnes et al., 2014). In a recent qualitative study from Vancouver, BC, exploring strengths, barriers, and gaps in connecting clients who are homeless to primary care, cellphone ownership was identified as a top priority by participants as a factor for strengthening healthcare access (Yu et al., 2019). Given the ubiquity and availability of mobile phones, mHealth approaches have the potential to improve care connection for underserved individuals through increased connection to their care teams, which includes communication of appointment and prescription reminders, as well as opportunities for phone-call-based or virtual care visits.

Vancouver’s Downtown Eastside (DTES) is one of the lowest income neighbourhoods in Canada, marked by high levels of homelessness and housing instability (Linden et al., 2013). Many residents live with mental health and substance use disorders, and experience high levels of trauma, structural violence, and criminalization, all of which disproportionally affect women and Indigenous individuals (Boyd et al., 2018; Linden et al., 2013). Chronic medical conditions, including HIV and hepatitis C virus (HCV) infection, are hyper-endemic, (Linden et al., 2013). Greatly impacted by the Opioid Crisis, the DTES has the highest rate of death due to illicit drug overdoses in British Columbia (BC) (Vancouver Coastal Health Authority, 2018), with recent data showing a striking 15-year life expectancy disparity between DTES residents and residents of neighbouring Vancouver areas (Vancouver Coastal Health Authority, 2018).

Historically, most DTES residents have relied extensively on publicly administered community health centres (CHCs), or clinics outside of the neighbourhood to access PHC. However, considering the over-representation of the DTES in health research (Neufeld et al., 2019), there remains limited published data adequately describing the healthcare utilization profiles of those who live in the neighbourhood (Shukor et al., 2019). Administrative reports indicate that rates of primary care attachment appear to be inconsistent and inadequate, with attachment to care often complicated by previous negative care experiences resulting in a lack of therapeutic continuity (Vancouver Coastal Health Authority, 2014). Despite the public health efforts to engage clients with complex medical and psychosocial needs, and the concentration of multitude of social services, healthcare teams and clinics in the area (Vancouver Coastal Health Authority, 2014; Yu et al., 2019), low care retention, high unmet needs, and poor health outcomes persist (Linden et al., 2013; Moallef et al., 2020; Salmon et al., 2009), resulting in elevated use of hospital emergency services in order to access healthcare (Somers et al., 2016). Community consultations have recommended more integrated and true low-threshold services to improve the health of DTES residents (Vancouver Coastal Health Authority, 2015).

There is a paucity of research examining mHealth strategies aimed at PHC retention. An mHealth initiative to engage medically underserved or excluded DTES residents is important and timely, not only in the complex health context of clients, but given the current convergence of the COVID-19 Pandemic and Overdose crises which further exacerbate barriers to accessing PHC. This study aimed to explore recent healthcare experiences and barriers, and assess the feasibility and acceptability of mobile phone PHC engagement among DTES residents, to inform the development of a tech-based PHC retention initiative. We sought to better understand DTES residents’ access and potential barriers to cellphone ownership, including safety, familiarity, and tech-related literacy, as well as use behaviours and preferences, and comfort with text-based communication with providers. Additionally, we elicited recommendations for PHC service improvement.

Methods

Qualitative Approach

Our study methods, including recruitment, data collection, and analysis, utilized a multi-method approach, informed by both community-based participatory research (CBPR) principles (Green & Thorogood, 2014) and interpretive description (Thorne et al., 1997). CBPR, which involves collaborative partnerships between Community/Peer and academic partners as co-investigators in the research process, is commonly used in health research and recognizes the need for equitable collaboration in knowledge co-creation and incorporation of community priorities (Green & Thorogood, 2014). Following participatory group processes (Jackson, 2008), a CBPR method intended to enable community/peer researchers as active participants in the analytic process, we adapted our approach to support full participation of all research study team members in the coding, consolidation, and interpretation of the data. In complement to CBPR and in order to support our study goals, our study was further guided by interpretive description (ID), a qualitative methodology adapted to applied health research (Thorne et al., 1997). Interpretive description is aimed at generating reliable, informed findings which directly respond to known gaps, with a focus on experiential and situated knowledges pertaining to the area of inquiry (Thorne et al., 1997).

Context and Study Sample

In October 2019, the British Columbia Centre for Excellence in HIV/AIDS (BC-CfE) opened the Hope-to-Health Centre (H2H), a multidisciplinary PHC Centre situated in the DTES. As part of the clinic’s objective to improve care for medically underserved DTES residents, the BC-CfE intends to implement a mobile phone health intervention to further support care engagement and retention of H2H clients in effective PHC. The establishment of the H2H Centre and adaptation of a mobile-health engagement strategy represents an important opportunity to address pervasive health system gaps that impact DTES residents who are marginalized by social-structural inequities. To provide guidance for PHC service improvement and to assess the suitability and appropriateness of a cellphone-based PHC engagement initiative for H2H clients, two gender-specific focus groups with DTES community members were held in February 2020, one with self-identified women, FGD1 (n = 13), and one with self-identified men, FGD2 (n = 12). Specific recruitment targets by gender were set in order to ensure gender balance in participation so that any relevant issues that might differ by gender would be adequately discussed. Participants were recruited through peer-led outreach from neighbouring community-based programs and were provided with an appointment card with focus group details. Participants were eligible if they were 19 years of age or older, identified as DTES community members, were comfortable participating in the focus group discussions (FGDs) in English, and self-identified as having had multiple concurrent health issues and had experienced difficulties accessing PHC. Peer-led recruitment from community programs located in the DTES, which serve low-income, underserved individuals residing in the DTES or accessing services in the community, was intended to purposefully engage individuals who fit the study eligibility criteria. Research indicates an association between residing in the neighbourhood and greater reliance on neighbourhood social and mental health and substance use supports (Ti et al., 2019). There was no requirement to be a H2H Centre client, and Peer recruiters did not recruit at the H2H Centre.

Data Collection and Analysis

The FGDs were approximately 60 minutes and held at a DTES-based community centre, with the goal of providing a neutral space to critically discuss participants’ experiences accessing PHC. The gender-specific format was intended to create a safer environment to better capture the diversity of participants’ perspectives and experiences. Owing to the high proportion of Indigenous DTES residents (Provincial Health Services Authority, 2020), and to support the credibility and dependability of the research (Guba & Lincoln, 1982), each FGD was led by one of two Indigenous Peer Research Associates (PRAs) with a background in group facilitation and living experience that could relate to the participants, in an effort to support more culturally safe and community-relevant knowledge sharing within the FGDs (Boilevin et al., 2019). The facilitators opened each focus group with a Land Acknowledgement of the Traditional, Ancestral, and unceded Territories of the Coast Salish Nation, the xʷməθkʷəy̓əm (Musqueam), Skwxwú7mesh (Squamish), and səlilwətaɬ (Tsleil-Waututh), where the focus groups were held. Each focus group also included one additional peer navigator from a local community organization, to provide support to participants. Participants were each provided with a $30 cash honorarium for their time. The interview guide was based on a literature review on barriers and facilitators to care and technology-focused care retention strategies and informed by feedback from the study team’s academic and peer researchers. The guide covered 5 main areas of inquiry: 1) PHC experiences; 2) experiences at the hospital/in acute care; 3) barriers to care; 4) strategies for staying engaged in healthcare; and 5) perspectives on mHealth.

At the start, participants completed short questionnaires – either self-administered or PRA-supported – to collect socio-demographic, health, and behavioural information, and information on cellphone use behaviours, preferences, potential usefulness, and acceptability of a cellphone communication tool to enhance PHC connection. The focus groups were not audio-recorded. This approach was taken in consideration of the sensitive and potentially triggering nature of the discussion, with the intention of making the process less invasive (Ingol et al., 2020) and to encourage the sharing of stories among those who may be apprehensive about speaking to negative healthcare interactions. Instead, throughout the focus groups, research staff took extensive, comprehensive written notes to summarize the discussions with a concerted effort to record directly, word-for-word, significant quotes which emerged during the discussions. To facilitate participants’ review of the data, notes were also simultaneously written up on large posters positioned in full view of the attendees. Graphic representation contributed to transparency of the data collection processes to help minimize researcher power/bias.

Immediately after the FGDs concluded, the study team met to debrief and discuss initial impressions, the summary transcripts and posters, and emerging findings, with summary notes taken during the discussion. Guided by participatory group analysis processes (Jackson, 2008) after initial individual review of the transcripts and discussion notes, the research team met to collectively review and code the study data, to collaboratively determine the initial major themes emerging from the group discussion. The process was iterative, with initial major themes determined, reviewed, and revised by the full team over a series of meetings in order to improve the dependability and credibility (Guba & Lincoln, 1982; Stahl & King, 2020) of the data through full team checking and the involvement of PRAs with lived experience throughout the data collection and analysis process. The group-based analytic process was guided by interpretive description (Thorne et al., 1997) and aimed to uncover findings related to recent care experiences and interest in mobile-health engagement in order to provide direct recommendations for the development of a phone-based retention initiative, as well as help improve service provision at the H2H Centre. Once the final themes were established by the group, the lead author and PI produced the first manuscript draft, which was reviewed by research team members before sharing with additional co-authors. As the FGDs were part of an effort to inform future work, Krueger’s note-based method of analysis was used to focus specifically on the larger themes which emerged from the discussions (Krueger, 2014).

Ethical Approval and Consent to Participate

Ethics review and approval for this study was obtained from the University of British Columbia/Providence Health Care Research Ethics Board (#H20-03256). Prior to commencing the focus groups, the Principal Investigator (PI) explained the study’s purpose and verbally reviewed the consent form, allowing for questions from the attendees before obtaining written informed consent from all focus group participants. In acknowledgement of the power-relations inherent in the research process, facilitators with lived experience also provided support to participants in the consent process by helping address potential questions from attendees. In accordance with the ethical approval for this study and to ensure participant confidentiality, consent forms, demographic sheets, and notes documenting focus group discussions were password protected and stored on encrypted computers repetitive or in locked filing cabinets at the research office, only accessible to the PIs and members of the research team.

Results

Survey Results

Participant Demographics

Of the 25 participants across both focus groups, the majority identified as cisgender (84%) and heterosexual (84%); the women’s focus group included both cisgender (those whose gender identity corresponds to their sex assigned at birth) and transgender women, and the men’s group included only cisgender men. The median age was 51, just over half reported some Indigenous ancestry (52%), and around a third identified as White; 84% reported having a high school education or higher. Just under a quarter were currently employed, with the most common sources of income being social assistance (60%) and paid volunteer work (44%). One fifth resided in single room occupancy (SRO) housing and around a quarter in assisted living or social housing. The most common answer under current housing was ‘Other’ for both focus groups, comprising 40% of participants and potentially indicating a high level of unstable housing and current homelessness; all the women and 75% of the men reported experiencing homelessness at some point in their lives. Time spent living in the DTES ranged from 4 months to 36 years (data not shown).

Tech-Use Behaviours and Preferences

Although participants from both groups strongly supported the use of text-based means to improve engagement on the survey, less than half (44%) owned a cellphone at the time of the study. Concerns about cost, the phone being lost or stolen, privacy, and not having a reliable and safe place to charge the phone were reasons for not wanting to own a phone. In response to survey questions about text-message communication with their healthcare provider/clinic, participants in both groups expressed high interest in text-based engagement with the clinic – 88% (n = 22) were interested in receiving texts about upcoming appointments and 80% (n = 21) supported receiving texts checking-in about their health and wellbeing, with high acceptability of automated reminders related to their health (84%, n = 21) (data not shown).

Focus Group Discussion (FGD) Findings

Healthcare Experiences

Collaborative group review of FGD transcripts and posters yielded three key themes, organized into the following categories: inadequacy of care, barriers to staying connected to care, and conceptualizing ‘good care’.

Inadequacy of Care

Participant accounts of previous healthcare experiences centred overwhelmingly on perceived inadequacy of services. Although some participants spoke to good healthcare experiences, such stories were the exception rather than the standard experience, particularly for attendees of the women’s focus group. Despite the socio-demographic similarities across both focus groups, attendees of the women’s group described feeling systematically excluded from the healthcare system, in contrast with participants of the men’s focus group – many of whom reported consistent and ongoing relationships with clinics/providers. Few of the women had stable long-term PHC providers, with the majority feeling that their healthcare needs were not being met, and their experiences inequitable; as one participant said, ‘can’t get that standard healthcare that every Canadian used to get’ (participant, FGD1). Women described limited options for alternative providers, with many feeling they had no choice but to stay in inadequate care because finding a new provider was a lengthy and exhausting process: ‘Problems with getting a family doctor who will take the time. Stressful and horrible procedure, eighth doctor it took to be able to get the care you needed’ (participant, FGD1). While both groups acknowledged that miscommunication with providers was a common issue and saw the importance of their role in managing personal interpretations of interactions, power imbalances were more evident in the women’s group, who discussed feeling that responsibility for compromise largely fell on them as clients. Conversely, a number of the men’s group participants reported feeling listened to and having somewhat stable and understanding relationships with their healthcare providers.

Participants in the women’s group also spoke to frustrations around experiences of both under- and overmedication. High rates of substance use in the DTES often meant that participants experienced difficulties finding providers who would prescribe adequate medication to manage pain, ‘[They] try to steer you away, cut you off, ridiculous to try to convince a doctor that you need pain medication for a legitimate reason, even with a broken back’ (participant, FGD1). Conversely, others felt overmedicated and underserved due to what they saw as an inordinate focus on pharmacological treatments, as opposed to holistic, person-centred care, leaving them feeling that their needs were unmet. As one participant put it, ‘A lot of the clinics are pill mills, we’re not there to be listened to, to understand who you are, there to be cycled through’ (participant, FGD1).

Both groups reported addressing their care needs through the use of emergency care/hospital services, which was unproductive and largely traumatizing. In discussing alternatives to hospital/emergency room use, participants recognized the importance of appropriate and timely PHC in preventing and deescalating health concerns, suggesting more evening and 24-hour clinics; though as one participant stated, a better alternative ‘hasn’t been created yet. There aren’t better ones out there’ (participant, FGD2).

Barriers to Staying Connected to Care

Stigmatized Identities and Dehumanizing Care Experiences. Discriminatory experiences in the healthcare system were highly gendered, with women, particularly transgender women, experiencing disproportionate structural violence within the healthcare system, and pervasive stigma related to both current or former substance use as well as their status as DTES residents. An overarching sentiment among the women’s group was that care experiences often lacked recognition of the humanity of those accessing care, and that providers showed a fundamental and consistent lack of respect towards them; as one participant put it: ‘…to get anybody to really treat you like you’re a human being down here is really difficult’ (participant, FGD1).

Participants felt that no matter their current situation, stigma functioned as a permanent record shaping all future healthcare interactions; as one participant (FGD1) put it, ‘Their attitude changes if they know you’re from the DTES, have ever used, use drugs’, while another (FGD1) stated: ‘To find a doctor that doesn’t stigmatize you for your past is almost impossible’. A history of substance use also meant this was commonly presumed to be the forefront issue for which treatment was being sought, leaving many frustrated and unable to address their actual health priorities or feel their concerns are taken seriously. A number of participants recalled being profiled as ‘drug seeking’, stressing the absurdity in these presumptions: ‘They think you’re dope seeking, think you’re there to get opiates. Don’t seem to realise that there’s way easier ways to get dope than go through this bullshit!’ (participant, FGD1). Persistent stigmatizing narratives were described as extending beyond the confines of the healthcare sector: ‘Finding work, a place to live, healthcare - it’s all the same. They just look at you and you get labelled, profiled. Just take one look at you and that’s where you stay’ (participant, FGD1).

For many women, finding non-judgemental, compassionate providers by whom they felt genuinely listened to was difficult; feeling respected by healthcare providers was an exception, rather than the common experience, and many perceived negative provider attitudes towards them and their needs as unyielding. Distrust was reinforced when participants felt that they were treated as inferior and talked down to by providers, who they believed neglected their lived experiences and knowledges about their own health needs; as one participant recounted: ‘I think they talk down to me, they don’t give credit that you’re actually intelligent people’ (participant, FGD1). According to participants, judgement and disregard, which comes from not being listened to, affected the relationship for both sides, making it difficult to get things done. Ongoing mistrust due to histories of discriminatory behaviour also impeded the cultivation of relationships with new providers.

Transgender women reported overwhelmingly disrespectful experiences, including refusal of treatment and transphobic behaviour – highlighting the lack of appropriate, safe, and accessible services for gender-nonconforming individuals:

[it’s a] systemic form of discrimination that’s built into the operating system and then there’s individuals… it’s a roll of the dice whether you get someone who respects who you are. I’m not a feminine man, I’m a woman, heart mind soul. (participant, FGD1)

According to attendees, seeking care as a transgender woman often meant forgoing medically comprehensive and specialized trans-healthcare for clinics where they felt respected. It should be noted that the FGD facilitator’s guide did not ask questions pertaining to race or ethnicity as factors impacting healthcare, and although less than a third of our participants identified as White, racism was not specifically named as a determinant of negative care experiences.

Socio-Structural Barriers. In addition to negative care experiences, attachment to PHC was complicated by personal, system-level, and social factors, impeding the building of trusting relationships which foster therapeutic continuity. Many participants recalled extended periods of not receiving healthcare. The multiple barriers described by the participants were not simply additive, but interconnected, acting upon each other to amplify their experiences of exclusion from the healthcare system. Barriers described included homelessness or housing instability, and financial difficulties such as budgeting on monthly social assistance/disability payments and prohibitive cost of some prescription medications. Getting to and from clinics and appointments was limited by physical mobility issues, inclement weather, and lack of access to adequate transportation – with a number of participants reporting harassment and ticketing by transit police, which was especially elevated on Social Assistance cheque-issue days. One participant shared: ‘Just going to the hospital, going across town, need to take it [public transport] for your care or the care of your kids. Police questioning and searching you, they don’t care, say there’s no reason to care’ (participant, FGD1). Furthermore, limited clinic hours, rigid appointment schedules, as well as monetary penalties for missed appointments were unrealistic for individuals with limited financial means and created discomfort for participants, discouraging or simply prohibiting many from returning to previously seen providers. Participants described how difficult life circumstances, social isolation, chronic health conditions, and challenges related to mental health and substance use elevated competing needs, making it difficult to keep track of time or remember appointments, which in turn created difficulties staying connected to care. One participant discussed the difficulty of staying connected to care when transitioning out of the foster care system, while another spoke to the impacts of involvement in the justice system: ‘In jail, can’t maintain connection to health’ (participant, FGD1).

Conceptualizing Good Care: Having a ‘Partner in Health’

Though much of the conversation centred on the deficiencies of the current system and ambivalence about provider relationships, throughout the discussions, participants affirmed their right to good care, keenly aware of the level of care required to meet their needs: ‘I have a right to seek the best healthcare that I can for myself, and I also have a right to not live in chronic pain constantly’ (participant, FGD1). Positive PHC encounters centred supportive, respectful, competent providers. Consequently, humanizing experiences where participants felt respected and were treated with kindness affirmed their dignity, and were overwhelmingly seen as necessary to improve the safety of PHC experiences. Care was seen as markedly better when participants felt heard by providers, commending those who took the time to listen rather than rush through appointments. One participant recounted a particularly positive care experience:

I receive kidney treatment on a regular basis. There is a nurse that makes me happy to see. She is polite and gentle. I ever rarely bruise or have marks from the needles. She tells me stories and makes tea. She also makes me feel like I am visiting friends instead of going to the hospital. I wish there were more like her. (participant, FGD1)

Consistency in providers and long-term relationships were identified as crucial aspects of ‘good care’, as one participant put it: ‘Been with my doctor 19 years. They’re always thorough, they remember everything, don’t have to repeat myself or the tell story again’ (participant, FGD1). Care continuity was also seen as an avenue for greater accountability for both clients and providers. Attendees of both groups envisioned good providers as their ‘partners in health’ – ‘Yes, I am 100% always honest with my provider, I have to be - I have a good relationship with my partner in health’ (participant, FGD2). Feeling happy with the care received was a reason to return: ‘If you’re happy with your doctor, it makes a big difference in healthcare’ (FGD1) – though participants noted building connection and rapport takes time. Care which centred their needs was prioritized, recognizing that there is a common disconnect between a clinical focus on health versus overall wellbeing.

Participant descriptions of ideal PHC included multiple services within the same clinic, such as outreach as well as mental health and substance use services, inclusive of on-site harm reduction, safe consumption, and injectable opiate agonist therapy. Peer support and navigation services were seen as particularly crucial to care continuity. Rejecting the institutional aesthetic of white walls and fluorescent/bright lights, descriptions of the ideal clinic included comfortable seating, entertainment, snacks and refreshments, with computers available for use – more like ‘a living room’. Participants also championed the use of incentives for PHC attendance, such as monthly draw prizes, as well as more flexibility around appointment scheduling (i.e. more drop-in availability and extended hours of operation).

Perspectives on Texting as a PHC Support Tool.

Our FGDs included both individuals who owned mobile phones at the time of the study as well as non-owners. Both focus groups indicated support for the use of texting as a means to stay connected with their PHC teams, affirming that cellphone ownership and the use of client–provider text-messaging can play a key role in strengthening retention. In response to discussion questions regarding text-messaging with care teams, texting with providers was seen as a convenient and easy avenue to relay information, book appointments and receive reminders, and support ongoing care team connection – even for those who stated they were ‘not good with technology’; as one participant put it: ‘I find myself always looking at my phone for one reason or another and then when you get a text message, you’re like “who’s that, who’s that,” so if a message comes in it throws it in your head’ (participant, FGD2). Another participant spoke about the usefulness of text-based reminders as a means to support stability and medication adherence: ‘If I don’t take my meds, very forgetful, bipolar, high-strung, out of control, homeless, not knowing what day is. Good to have a reminder and stay connected’ (participant, FGD1).

In response to questions regarding acceptability of text messages and communication preferences with care teams, participants stated they preferred virtual communications to come from peers, social workers, or counsellors versus other care team/clinic staff. They also highlighted that text-based interaction also provided an avenue for social support, for example, for those experiencing isolation; as one participant said of the benefits of client–provider texting, ‘If you have a moment of depression, isolation, loneliness and you have that person you can talk to, that means a lot’ (participant, FGD2).

Potential issues raised by participants included concerns about privacy and confidentiality – especially for those sharing a phone, keeping phones charged and protected, as well as data and minute limitations. Concerns were also brought up about variability in technology literacy: ‘If you give people a phone and they can’t use it what’s the point?’ (participant, FGD2). Though the majority of attendees preferred text messages over the phone/voicemail reminders, considering them to be less intrusive, those who did not support the idea cited concerns about the reliability and sincerity of clinic staff, stating this would likely be inappropriate if there was no established relationship with the clinic. Additionally, concerns were raised around discomfort with English language, both for those who spoke English as a second language as well as those with literacy barriers, indicating that a one-size-fits-all approach may not be appropriate for all clients.

Discussion

We found that despite the centralization of publicly funded and administered PHC clinics in the DTES of Vancouver and surrounding area, long-term relationships with PHC providers were somewhat uncommon among participants in this study. Although many were connected to some kind of care, unmet or insufficiently met health needs were common – with significantly worse experiences and highly stigmatizing and dehumanizing encounters reported by women. Attachment to PHC was impacted significantly by provider attitudes and histories of discriminatory and dismissive interactions, in addition to known personal and socio-structural barriers, such as economic marginalization. Within this seemingly complex issue of healthcare exclusion and inadequate service provision, participants’ priorities were simple, yet fundamental – being treated with kindness and respect, feeling listened to, and humanizing attitudes were seen as foundational.

High rates of discrimination due to the stigmatization of substance use and residence in the DTES, particularly by attendees of the women’s group, affirm findings from other studies (Collins et al., 2016; Damon et al., 2017; Moallef et al., 2020). Socio-spatial stigma (Wacquant et al., 2014), referring to socially constructed narratives attached to neighbourhoods and those who reside there (Damon et al., 2017), is often discussed in the context of communities with concentrated populations of individuals marginalized by social-structural inequities (i.e. homelessness, drug criminalization, and economic deprivation) (Damon et al., 2017). This type of stigma can remain despite changes in circumstance (Collins et al., 2016), and has numerous and intersecting effects on health (Keene & Padilla, 2014). Participants recounted that harmful stereotypes associated with the neighbourhood as well as current or former substance use were consistently used to validate prejudice against them in the care system, contributing to unmet care needs, including inadequate pain management – a commonly reported unmet need among people who use substances (Moallef et al., 2020). Participants described being repeatedly profiled in care settings, with dismissive and judgemental attitudes contributing to hesitation to find better care or change providers, as well as ‘reactive avoidance’ (Muncan et al., 2020) in anticipation of harm – leading many to forgo medically necessary or timely care and increasing subsequent utilization of emergency and hospital services. Though less common, some did report positive experiences and long-term relationships with providers. In contrast to the negative interactions described by the participants which led to care disengagement, these relationships were described as being centred on mutual respect, honesty, bi-directional accountability, as well as caring and supportive provider attitudes. In the discussion, participants highlighted good care as care where they felt their needs were prioritized, and where they felt to be in a partnership with their providers, with regard to decision-making. However, attendees did not generally differentiate between PHC services in the DTES and those accessed outside of the neighbourhood when discussing negative experiences. Although not explicitly discussed, this is likely a reflection of the expansion of team-based, holistic care models and low-threshold clinics and CHCs which utilize culturally safe and gender-appropriate care in the DTES and surrounding area (Vancouver Coastal Health Authority, 2022), a number of which were identified by attendees as supportive PHC services.

Our findings underscore how experiences of stigma and discrimination in healthcare intersect with social categories, such as gender, and that observed health disparities are rooted in and perpetuated by multiple and interconnected socio-structural factors. Compared with the attendees of the men’s focus group, women reported experiencing greater difficulty finding adequate care due to stigma and discrimination, and more women than men reported daily substance use and a history of homelessness. These disparities point to the additional barriers to care for women who experience intersecting barriers, such as non-cisgender and racialized women (Collins et al., 2019; Salmon et al., 2009), and the synergistic effects of multiple socio-structural marginalizations (i.e. social exclusion and structural oppressions), which result in the amplification of existing barriers (Katz et al., 2020). As noted, respectful care was sometimes prioritized over clinically relevant care or specialized health services by some of the transgender women in our study. Although racism was not specifically named as a determinant of negative care experiences, we surmise that many participants likely experienced additional race-related stigma, as just over half of focus group attendees reported some Indigenous ancestry, with a further 16% identifying as non-White. Systemic racism in the Canadian healthcare system is a significant contributing factor to health inequities for racialized individuals (Datta et al., 2021) including for Indigenous populations in Canada (Goodman et al., 2017; Turpel-Lafond, 2021). Compared with their non-Indigenous counterparts, Indigenous individuals, particularly those living in urban centres, experience significantly worse health outcomes and greater limitations to accessing care as a result of pervasive race-based stigma, stereotyping, and discrimination within the healthcare system, sustained by the ongoing harms of colonialism (Goodman et al., 2017; Turpel-Lafond, 2021). Furthermore, the convergence of the Opioid overdose and the COVID-19 crises has resulted in a significant rise in overdose deaths over the last year (British Columbia Coroners Service, 2021), posing additional health and social challenges for individuals who reside in this neighbourhood, with particularly devastating impacts on Indigenous Peoples in BC, who are disproportionately represented in deaths resulting from toxic drugs (First Nations Health Authority, 2021).

Survey responses regarding mobile phone communication with care teams among our study participants indicated a high acceptability and strong support for the use of provider–client text-based communication as a means to improve PHC engagement in this community, indicating a key area for action. These results echo other studies examining the feasibility of mHealth care engagement to improve healthcare system navigation, communication, and shared decision-making for individuals who experience socio-structural marginalization (Jongbloed et al., 2020; McInnes et al., 2014). Participants underscored that cellphone ownership and the use of client–provider text-messaging would be helpful to strengthening care continuity and engagement with their care teams, similar to a recent Vancouver-based study indicating the usefulness of cellphone ownership for care connection for homeless individuals experiencing barriers to PHC (Yu et al., 2019). Given the identification of limited cellphone ownership as a barrier, provision of cellphones should be a key component of a mobile-health initiative aimed at addressing PHC engagement in the DTES. The strong interest in strengthening client and care team relationships through text communication via peer staff presents an important opportunity to address barriers such as care-provider stigma, and centre the role of experiential knowledge and peer expertise in supporting connection to care for individuals who experience healthcare exclusion and social disenfranchisement (Pauly et al., 2020). Interactive check-ins and supportive communication with preferred staff may also provide social support to those experiencing social isolation, a particularly pertinent issues in the context of the COVID-19 Pandemic.

Although technological advancements and the accessibility of cellphones may not address larger underlying structural issues which impede accessibility, they present much needed solutions to improve care access through the removal or reduction of some common barriers to connecting with providers. Client–provider text communication can help reduce some challenges such as late arrivals, forgotten or missed appointments, as well as mobility limitations – which were highlighted by study participants. It should be noted that whilst technology provides an important avenue for innovative care engagement solutions, there is significant potential for it to serve as a barrier, due to inequitable access and literacy limitations (Majeed & Khan, 2019). Special attention must be given to supporting equitable access, addressing potential gender considerations, skills-building, as well as longer-term solutions that address social-structural barriers to care connection.

Strengths and Limitations

This study has several strengths and limitations. Our focus groups were not audio-recorded; as such, we do not have direct, verbatim records of the discussions. Although audio-recording is more rigorous, note-based analysis is acceptable and particularly useful in instances where audio-recording may not be culturally appropriate or where it could inhibit open sharing on a sensitive topic (Ingol et al., 2020; Quintanilha et al., 2015) – making this a less intrusive method for discussions with individuals who have had negative care experiences. Other researchers have reported good thematic reliability between recorded and non-audio-recorded transcripts (Ingol et al., 2020), and despite the described limitation of note-based analysis, we believe these results present important experiences of care disengagement/engagement for this community, as well as novel perspectives on the acceptability of a mobile phone–based healthcare engagement intervention for individuals accessing PHC services in the DTES. Given that only two FGDs were held, with fairly large participant attendance, our data may be limited in its generalizability beyond those included in this study. Our participants were recruited through neighbouring community-based programs and as such may not fully represent the experiences of those who face more severe marginalization and exclusion. However, given the heterogeneity of the neighbourhood, as well as research indicating a high rate of social service use for those residing in the DTES, we believe that our peer-led community program–based recruitment strategy helped us include the perspectives of a range of underserved DTES community members.

Conclusion

We found relatively low PHC attachment, with experiences of discrimination and perceived inadequacy of health services reported by participants. These findings indicate a significant and ongoing need to improve client–provider relationships in order to strengthen care engagement and care continuity for people experiencing chronic and complex health conditions, with special attention to provider attitudes to reduce stigma and discrimination. Results of the focus groups indicate that text-message communication is an important potential avenue for improved client–provider connection, check-ins, and appointment scheduling and reminders. Our study strongly supports a tech-based PHC engagement strategy to improve care retention and health outcomes among underserved individuals who experience social-structural barriers.

Footnotes

Acknowledgements

We respectfully acknowledge that our work takes place on the Traditional, Ancestral, and unceded Territories of the Coast Salish Peoples. We would like to thank our study participants for sharing their time, life experiences, and expertise with us. We are also thankful to the Alexander Street Community Centre and their staff, peer navigators from RainCity Housing who provided their support to participants, Valerie Nicholson and Matthew Fischer for their facilitation and contributions to this work, and the Hope to Health Research and Innovation Centre and HERE study research team for supporting this work.

Author Contributions

This study was conceptualized by SP, DM, KS, and RB. The interview guide was developed by SP, TP, VN, DM, KS, RB, MF. VN, and MF facilitated the focus groups, with assistance from JF, SP, and TP, who all participated in analysis of the data. The initial manuscript draft was written by TP and SP, with significant input from VN, MF, and JF. Each of the listed co-authors (SP, TP, VN, DM, KS, RB, MF, VN, RTL, and HK) contributed substantively to this manuscript and approved the final version.

Declaration of Conflicting Interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: RTL is co-founder and scientific director of WelTel Incorporated which developed and provides digital health messaging services.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Operational funding for this study was provided by the BC Centre for Excellence in HIV/AIDS.

Ethical Approval

Ethics review and approval was obtained from University of British Columbia/Providence Health Care Research Ethics Board (#H20-03256).

Informed Consent

Written, informed consent was obtained from all individual participants included in the study.

Data Availability

Data for this study are available upon request, with some restrictions from research ethics and contractual obligations.

ORCID iD

Tatiana E. Pakhomova

Appendix

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