Not Just “A Roof over Your Head”: The Meaning of Healthy Housing for People Living with HIV

^✠This article is dedicated to the memory of LaVerne Monette, co-investigator with the Positive Spaces, Healthy Places (PSHP) research project, who passed away on December 1, 2010. Responsible for the Aboriginal arm of the study, she played a key role in developing the larger study. She brought to our team her life experiences as an Aboriginal woman and her passion to help Aboriginal people living with and at risk of HIV. She understood the critical role of housing in health and quality of life, and was a strong advocate for research to identify the housing needs of Aboriginal people in Ontario and for policy change that will lead to safe, stable housing for all.

Abstract

The literature has identified housing as a fundamental unmet need for people living with HIV; yet there has been little qualitative evidence exploring housing and HIV, particularly from a Canadian context. This paper focuses on our qualitative analyses of the housing experiences of 48 HIV-positive people living in Ontario. Findings from our interviews illustrate healthy housing as a dynamic interconnection between health, housing and other social factors that are influential to the health and well-being of people with HIV. Four salient themes have emerged from our qualitative findings: the interplay between healthy housing and economic security; the relationship between HIV, health and housing precariousness; the interconnection between housing, HIV, safety, stigma, social isolation and social exclusion; and the meaning of healthy housing for people living with HIV. These findings re-emphasize the importance of housing policies that consider housing as more than just a roof over one’s head, but also as something that supports the physical, mental, emotional and social well-being of people living with HIV.

KEY WORDS:

• HIV/AIDS
• Housing instability
• Health
• Stigma
• Social inclusion

Introduction

Access to housing that is affordable, habitable, accessible, culturally appropriate and safe is recognized as a human right (United Nations 1948). Yet the need to ensure these rights still remains, particularly for some vulnerable populations who disproportionally experience precarious housing. In Canada, there has been a growing recognition of the need to legislate these rights as Canada is currently the only Group of Eight (G8)¹ country without a comprehensive housing strategy (Ticknor and Belle-Isle 2010). This legislative proposal for a national housing strategy has emboldened other housing-related projects, including those for populations particularly vulnerable to precarious housing such as those living with HIV.

In 2002, HIV/AIDS community advocates in Ontario identified housing as a fundamental need that was often unmet for people with HIV and recognized the limited research linking housing to health. To respond to these gaps in service provision and knowledge, a coalition of community-based researchers, and representatives from AIDS service organizations (ASOs), community health organizations, housing services, and people living with HIV, united for the common purpose of developing an HIV/AIDS research strategy, a front-line practice initiative and a policy response to this housing crisis. The Positive Spaces Healthy Places (PSHP) research study is the first longitudinal, community-based research (CBR) project in Canada to examine the relationship between health and housing for people with HIV. Using both qualitative and quantitative methods, the objectives of the PSHP project were to explore the housing experiences of people with HIV and to examine housing stability and security in relation to physical and mental health, and intermediate health outcomes. This paper reports on the qualitative findings from this study.

While the current evidence supports housing as a determinant of health, there is limited research contextualizing this relationship from the perspective of people with HIV. If healthy housing – housing that is safe, secure, affordable and hospitable – can contribute to the betterment of health for the general population, what is a model of healthy housing for people with HIV? In order to attempt to answer this question, the voices of HIV-positive people must be central to the development of these models.

Moreover, although there is a growing body of literature examining the effects of housing on the quality of life of people with HIV (Aidala et al. 2012; Leaver et al. 2007; Greene et al. 2010, 2012), there is limited qualitative evidence exploring housing stability and security and its relationship with the physical and mental health of HIV-positive individuals. Particularly, more evidence is required that explores the intricacies of housing and health that is specific to people with HIV. For instance, the current literature typically reports the one-way relationship of housing and health: how housing determines health. Yet, for people living with a chronic, episodic illness like HIV, what about the converse: How does health affect housing attainment? Furthermore, there is little written material on housing as a key factor in the interplay between experiences of social isolation, social exclusion and HIV-related stigma and discrimination.

The purpose of this paper is to delineate the meaning of healthy housing for a population identified as particularly vulnerable to housing instability and homelessness in Canada: people with HIV. From the narratives of 48 HIV-positive people in Ontario, we hope to identify salient features of healthy housing for people with HIV. Although our analysis locates housing and health within the context of HIV seropositivity, we expect that these findings will also be fruitful for expanding the vision of healthy housing in Canada.

Precarious Housing in Canada

Precarious housing in Canada has increased in size and complexity over the past few years. While absolute homelessness – living in an emergency shelter, on the streets or in parks – was once used as a barometer of precarious housing, the more recent literature has broadened the definition of homelessness to include temporary, insecure living situations (hidden homelessness) and living situations that are insecure, inhospitable, unstable or unsafe (relative homelessness) (Frankish, Hwang, and Quantz 2005; Echenberg and Jensen 2008). Current statistics warn of the growing precarity of housing in Canada. Recent Canadian estimates predict that in a given year, 150,000–300,000 individuals experience absolute homelessness and 450,000–900,000 individuals experience hidden homelessness (Wellesley Institute 2010). An even greater proportion of Canadians are predicted to be relatively homeless. The 2011 National Housing Survey reported that one out of four Canadians is spending 30% or more of their total income on housing, which is the affordability threshold as defined by the Canada Mortgage and Housing Corporation (Statistics Canada 2013). Homelessness in Canada is like a “precarious housing iceberg” where a large extent of the problem – hidden homelessness and relative homelessness – is not immediately apparent (Wellesley Institute 2010).

The demographic make-up of homelessness is also shifting; an increasing number of Indigenous people, youth, women and families are experiencing homelessness (Gaetz et al. 2013). Reductions in public housing, cuts to social assistance, lack of low-income housing and increased poverty have been noted as contributing to precarious housing in Canada (Echenberg and Jensen 2008; Gaetz et al. 2013; KNUS 2008; Wellesley Institute 2010). For instance, the reduction in rental housing and rising rental costs coupled with growing economic insecurity and limited governmental supports have contributed to the financial instability of housing, particularly for those who are living in poverty (KNUS 2008).

Current evidence suggests that precarious housing for people with HIV may also replicate the general demographic make-up of housing insecurity in Canada. A number of research studies have examined the housing precarity of Aboriginal people, African Diasporic (Black racial identity) communities, women, families and older people with HIV (Furlotte et al. 2012; Greene et al. 2010; Monette et al. 2009, 2011; Ndlovu, Ion, and Carvalhal 2010; Riley et al. 2007; Tucker et al. 2009). This evidence compliments the demographic diversification of the epidemic in Canada, where key populations at risk for HIV include men who have sex with men (MSM),² people who use drugs, women, Aboriginal people and people from countries where HIV is endemic.³

Meaning of Healthy Housing

According to the World Health Organization (WHO), access to healthy housing is vital for healthy living and essential to social equity (Marmot et al. 2008). Housing literature has increasingly identified housing as more than just a physical place of shelter. Housing encompasses four interrelated components: the physical structure (house), the social environment of the household (home), the immediate physical living environment (neighbourhood) and the social characteristics, amenities and services within the neighbourhood (community) (Ranson 2002). Thus, housing is a space or place that is a dynamic interplay of social, demographic, economic and cultural factors at the building, neighbourhood and social levels (Bolte et al. 2012).

In conceptualizing healthy housing, the literature recommends a broad definition of both housing and health. Fuller-Thomson, Hulchanski, and Hwang (2000) caution against definitions of housing that focus only on the physical residence but not on home, neighbourhood or community. Additionally, the definition of health must be broad enough to encompass both the ill effects of unhealthy housing and the betterment that access to healthy housing can provide to one’s well-being. The WHO definition of health is often cited in the literature, where health is defined as “a state of complete physical, mental and social well-being and not merely the absence of disease and infirmity” (WHO 1948). Thus, healthy housing is not just the prevention of illness or injury within one’s place of residence; it is also the provision of a hospitable living environment that enhances one’s quality of life. A broad conceptualization of healthy housing considers the affordance for well-being of the physical space (e.g. spaciousness, housing safety), one’s mental well-being within this space (e.g. social supports, protection from house-related stressors), one’s environmental health (e.g. protection from noise or pollutants), the affordances for social well-being in housing (e.g. affordability, housing satisfaction, housing tenure, socially inclusive) and their immediate neighbourhood (e.g. access to social resources, community and cultural services, protective services) (Bolte et al. 2012). Healthy housing should also address the constellation of physical, social, socio-economic and environmental factors that encompass the physical shelter in which one resides, the residential neighbourhood where one lives, and the social and community environment of one’s housing.

Healthy Housing and HIV

The significance of housing as a determinant of health has been well documented in the literature. Physical housing conditions, such as poorly maintained housing, and overcrowding have been identified as contributors to worsening health (Pevalin, Taylor, and Todd 2008). Living in socially deprived neighbourhoods has been linked to anxiety, depression, poor self-rated health and premature mortality (Macintyre et al. 2003; Pevalin, Taylor, and Todd 2008; Poortinga, Dunstan, and Fone 2008). Conversely, housing can contribute to mental, physical and social well-being. For populations with a history of housing instability, housing stability has been associated with reduced hospitalization and emergency room visits (Hanrahan et al. 2001; Sadowski et al. 2009), as well as improvements in mental health and substance use issues (Clark and Rich 2003; Tsemberis, Gulcur, and Nakae 2004). Improvements in poor housing conditions have also been associated with enhancing physical, mental and social well-being (Barton et al. 2007; Braubach, Heinen, and Dame 2008; Dunn 2000; Howden-Chapman et al. 2008; Shortt and Rugkåsa 2007; Thomson et al. 2009).

Research specific to HIV seropositivity has echoed the findings in the general literature. For people with HIV, current evidence supports the claim that the provision of safe, affordable, stable housing is crucial to mental, physical and social well-being and that stable housing can make a significant contribution to improvements in medication adherence, mental health, social support and overall health (Greene et al. 2010, 2012; Monette et al. 2009, 2011; Rourke et al. 2011, 2012; Smith and Pynoos 2002).

Despite comparable findings amongst the literature on health and housing, some of the unique concerns of living with HIV warrant special attention. Housing literature has noted the particular vulnerability of HIV-positive people to housing insecurity and homelessness (Aidala 2005; Culhane et al. 2001; Evans and Strathdee 2006; Kidder et al. 2008; Rourke et al. 2012). Research evidence has consistently indicated the financial or economic vulnerability of people with HIV across the social stratum, particularly their challenges with managing their housing, income, employment and treatment requirements (Mahamoud et al. 2012). Furthermore, the current evidence demonstrates the vulnerability of people with HIV to stigma and discrimination (Bogart et al. 2008; Gardezi et al. 2008; Greene et al. 2010). HIV-related stigma defined as “prejudice, discounting, discrediting, and discriminating directed at people who have or are perceived to have HIV” (Herek 1999), and other forms of identity discrimination have been identified as prevalent barriers to accessing and maintaining stable housing (De Bruyn 1998; Duran et al. 2000; Gielen, Fogarty, et al. 2000; Gielen, McDonnell, et al. 2000; Leech 2003). The specific health vulnerabilities of people with HIV, such as compromised immunity, health co-morbidities, treatment adherence, and illness and treatment side effects, can put those without stable housing at greater risk of poorer health. Study findings on housing instability and health for people with HIV indicate that those who are unstably housed experience worse mental and physical health outcomes, have lower CD4 counts, have higher viral loads, suffer higher rates of mortality, are more likely to be admitted to a hospital or to emergency care and are less likely to be on antiretroviral therapy (ART) or to regularly adhere to ART (Leaver et al. 2007; Kidder et al. 2007; Rourke et al. 2012; Shubert and Bernstine 2007).

While current evidence substantiates the links between housing and health for people with HIV, this relationship is complex and nuanced. Though the research exploring healthy housing for people with HIV is burgeoning, there is limited qualitative evidence exploring the dimensions of healthy housing. Of interest in this paper, is the dynamic interchange between housing and health and its effect on housing precariousness and security, as well as the interconnections between housing and social factors identified in the HIV literature such as HIV-related stigma and discrimination, social isolation and social exclusion. While the quantitative literature on HIV, housing and health, including the quantitative evidence produced by PSHP, has been instrumental to identifying key links between health, housing and other determinants of health, qualitative literature provides evidence on the complexities of this relationship in regard to healthy housing. Theorizing healthy housing in the context of living with HIV provides a foundation for shifting from theory to the actual development and implementation of critical housing practices and policies (Greene et al. 2012).

Theoretical Frameworks

The PSHP study employed two theoretical frameworks: social determinants of health (SDOH) and CBR. SDOH broadened our understanding of health and located healthy housing within the context of social, economic and environmental conditions in which people with HIV live and interact. CBR informed our approach to research, where research is conducted with and for the communities under study, and where the overarching goal of research is to inform practical action. We found that both frameworks complemented our approach to research as a social equity tool that can inform social and policy change.

Social Determinants of Health Perspective

The SDOH are “the economic and social conditions that shape the health of individuals, communities, and jurisdictions as a whole” (Raphael 2009). The literature on housing and health in the context of HIV highlights the importance of working within an SDOH framework, when conceptualizing healthy housing (Aidala et al. 2005; Dunn 2000; Greene et al. 2012). This framework is critical to exploring social processes and practices related to housing and to delineating the links between housing and health outcomes for people with HIV, such as access to and utilization of health care, adherence to treatments, changes to health and overall quality of life. Moreover, the SDOH framework has been a critical component to understanding the interchange between housing and health, and other determinants of health such as income, a social safety net, social exclusion and access to health services.

Our CBR Approach

CBR has become a recognized tool for addressing urban health issues including HIV/AIDS. Central to the application of CBR is the multidisciplinary, collaborative partnerships between community members, service providers and academic researchers, and assurances that research is relevant, ethical and methodologically rigorous and sound (The Loka Institute 2007). The principles of CBR include a commitment to the capacity building of community and academic partners, the empowerment of communities through all stages of the research process, the sharing of decision-making and information and the creation of action outcomes that contribute to social change (Israel et al. 2003). The PSHP research project has all of these critical elements: people with HIV are central to the execution of the project and dissemination of project findings, community and academic partners are involved in all aspects of the study, and the aim of the study is to achieve political and social outcomes, including redefining housing models for people with HIV.

Methodology

The PSHP study engaged in a mixed method design that included 605 administered quantitative surveys of people with HIV from across Ontario and 48 in-depth interviews with a subset of the participants. The qualitative subset of the PSHP study was selected to be representative of the HIV epidemic in Ontario, yet aimed to oversample key and emerging populations affected by HIV and precarious housing (e.g. women, families, Aboriginal populations, ethnoracial populations, immigrant populations). The qualitative subset was demographically diverse in regard to gender, ethnocultural identity, immigration status, sexual identity and current geographic location within Ontario. This subset included 19 men, 28 women and one transgendered woman. Of the 43 individuals who provided their sexual identity, 17 identified as LGBT, and 26 as heterosexual. Of the 36 individuals who identified their ethnocultural identity, six participants identified as Aboriginal, 18 as Caucasian, 10 from the African Diaspora and two as Asian. Participants reported living throughout Ontario, Canada in both urban and rural environments. Of those participants who identified as parents, 25 lived with their children.

The qualitative interviews were conducted to both complement the quantitative findings as well as gain an in-depth understanding of the housing trajectories and housing services for people with HIV. The semi-structured nature of the interviews also provided flexibility for the participants to share their unique narratives about their housing experiences. During the qualitative interview, we asked participants to describe their housing experiences such as their housing trajectory since their HIV-positive diagnosis, experiences obtaining and maintaining housing and with housing-related services, descriptions of their living environments, and the beneficial and challenging factors they experience in regard to their current housing situations. Similar to the quantitative survey, qualitative questions focused on some of the key issues identified as salient in the housing experiences of people with HIV relating to their health (e.g. housing stability, access to health and allied services, and experiences of housing discrimination).

The qualitative data underwent thematic analysis and triangulation. Three of the authors (LC, SG and JW) reviewed all of the interviews to gather an understanding of the narratives, to pinpoint common themes and to develop a coding key based on the sub-sample of transcripts that was modified as new themes emerged. Once all of the interviews were coded, we identified overarching themes in participant narratives. We coded interviews collaboratively, meeting regularly to compare our coding and to discuss prominent themes. We also integrated our reflective notes within the analytical process and met with the larger team of qualitative and quantitative researchers, service providers and community members to discuss our findings and to compare them to those found in our quantitative analysis (Braun and Clarke 2006; Maxwell 1992; Sandelowski and Barroso 2008). This collaborative process ensured that our analyses were grounded by participant narratives and enhanced the credibility of our findings (Tracy 2010). Pseudonyms and regional categorizations have been used to protect the identity of the participants. This study received ethics approval from McMaster University and from the University of Toronto.

Findings

Findings from our interviews illustrate healthy housing as a dynamic interconnection between health, housing and other social factors that are influential to the health and well-being of people with HIV. Four salient themes have emerged from our qualitative findings: the interplay between healthy housing and economic security; the relationship between HIV, health and housing precariousness; the interconnection between housing, HIV, safety, stigma, social isolation and social exclusion; and the meaning of healthy housing for people living with HIV. Our findings identify some of the unique concerns people with HIV have regarding their economic security and its impact on their choices of (un)healthy housing. Our findings also highlight the deleterious effect that housing instability and unsafe housing can have on the health and well-being of people with HIV, and the particularities of health within the context of HIV seropositivity. Lastly, these findings illustrate the interplay between stigma, social isolation and social exclusion and their interconnections to the individual and collective meaning of housing stability, safety and security.

(Un)healthy Housing, HIV and Economic Insecurity

For people with HIV, there appears to be an intrinsic link between health, housing stability and economic security as illustrated in participant narratives. In Ontario, many people with HIV rely on governmental income supports such as the Ontario Disability Support Program (ODSP) or disability pensions. Often, the amount of income earned through these forms of support limit housing options to subsidized housing, which, as of 2011, had wait times of up to 10 years (Ontario Non-profit Housing Association 2012). Affordable housing can often be poorly maintained or far from social amenities or can be illegal forms of housing, which can leave people vulnerable to losing their homes. While government supports may be able to provide some financial stability, the limited income paid out of them does little to sustain people living in poverty, subsequently limiting housing options. Disability supports are also limited by age eligibility. For example, as David shared:

The other situation with being on a disability in Ontario, support disability, is at 65 that goes away. And you’ll have no money. So I mean at that point, well my point, I have twenty years in order to put some money away or to get something together because at 65 if I’m still alive. Where am I going to live? How am I going to afford to live? Where’s it going to go? (David)

While the advent of ART has improved the life expectancy of people with HIV, if older age requirements do not change, ageing out of disability supports is a potential reality for HIV-positive people, which will affect their long-term economic security and housing stability.

According to our participants’ narratives, living on governmental financial support often restricted their choices for housing that may have potentially improved their physical and mental well-being. Sheri found her receipt of ODSP discouraged her from moving to a physically safer environment that she could afford:

That house I had to settle because that was cheap, what I can afford. After I pay my bills and everything, I’m still unable to support the people back home and I can’t have another second job because now ODSP would remove me on my drug card so I just have to survive with what I have. (Sheri)

Sheri’s desire to work stemmed from a need to make enough money to move out of her current residence; yet, if she generated slightly more income, she feared losing the supports she received while on ODSP. This was particularly worrisome in light of her continued need to access medication supports. Consequently, Sheri found herself in a no-win situation and thus remained on disability supports. This demonstrates that a reliance on income supports can contribute to feeling “stuck” in poverty and feeling “forced” to live in inadequate housing.

For participants who chose employment over ODSP, economic security remained elusive. As illustrated by many of the people we interviewed, gainful employment did not reduce fears of economic instability. It is not uncommon for people with HIV to be precariously employed: working in temporary, low income or part-time employment that may not provide enough income to allow them to rise out of poverty (Worthington et al. 2012). Economic security can be particularly challenging for people with HIV who are entering or re-entering the Canadian labour market, particularly for recent immigrants, or middle-aged or older people who have had limited time in which to contribute to their savings. For some participants, the potentiality of leaving the workforce temporarily or permanently due to illness or retirement exacerbated concerns of income security. Economic security can also be particularly challenging for HIV-positive women and for immigrants, such as Hope, who are particularly disadvantaged in obtaining and maintaining work that keeps them out of poverty (Dray-Spira et al. 2006). These concerns of economic security discouraged some from leaving poor housing environments. As Hope articulated:

I have a job, I can afford to pay the rent, but after the rent and food there’s not much left over but I try to live within my budget and so the concern were what if I were to get sick. It’s not subsidized housing. What if I were to get sick and not be able to work? What is the next step from here? What do I do? Where do I go? (Hope)

Other people with HIV have echoed Hope’s concerns. Current economic stability did not necessarily assuage fears of future economic instability; rather, the episodic and chronic nature of HIV-related illnesses may have a negative effect on long-term economic security and subsequent housing stability.

Some of the people we interviewed were living in non-subsidized housing that, on the surface, appeared to provide them with increased housing stability. However, the financial consequences of living in non-subsidized housing demonstrated how home ownership or living in market rent housing can contribute to economic insecurity. Employment income or holding of assets would make some people with HIV ineligible for financial supports or subsidized housing. Some of the people we interviewed discussed living paycheque to paycheque, and for those paying market rent or mortgages, any changes in their housing experiences such as rent increases, utility costs or changes to their financial circumstances may put their housing at risk. An example of this is reflected in Tina’s narrative:

Throughout all of this time, I was struggling with a lot of financial difficulties and on top of that, I ended up skipping on my rent. So not skipping but I was late for my rent quite a few times. So the board decided to evict me basically … I was very stressed out. I had a very difficult time going through that whole – and my health was definitely declining during that whole time, my counts were going down, I was getting down, some minor opportunistic infections and um really I had to really take care of myself in order to get through it. (Tina)

Although Tina was employed, her income was so low that she was still struggling financially. However, because she was employed, she was unable to qualify for subsidized housing. The stress of both economic instability and potential loss of housing appeared to have worsened her physical and mental health.

These narratives illustrate the dynamic interchange of housing and health for people with HIV. Participants discussed housing stability, housing safety and economic security as competing forces. Some made housing choices due to limited financial options, but at the risk of housing safety; others chose housing that was physically and emotionally safer, but that put their financial security and housing stability at risk. The financial or environmental instabilities associated with housing often fuelled anxiety and stress over one’s housing or economic stability, challenged health maintenance and antiretroviral adherence, and exacerbated existing physical and mental health conditions. For participants particularly challenged with economic security – immigrants, women, single parent families – concerns of economic insecurity may have kept them in unhealthy living situations.

(Un)healthy Housing, HIV and Precarious Housing

Housing transiency emerged as a common theme and this was perhaps most evident in the number of times participants moved residences, with some people moving up to five times within a 12 month period. The frequency of moving was associated with a number of factors including lack of space, high rents, HIV-related stigma and housing discrimination. Moreover, participants also found themselves couch surfing, or being dependent on friends or loved ones for a place to sleep (Wellesley Institute 2010). For some, this was experienced as a positive alternative to rough sleeping (Kennedy and Fitzpatrick 2001), namely, sleeping in places not designed for long-term residency or shelter living. For others, this did little to provide a sense of housing security. As Shanthi revealed:

There wasn’t anything positive about that, it was awful because when you rely on somebody else and your name isn’t on the lease you are always faced with the fear of getting evicted right? Because they can ask you to leave at anytime, there’s nothing you can do. So I mean I was very like I never knew where I was going and you know so it was nice even to move into [supportive housing] where my housing was secure. (Shanthi)

While the fears associated with housing transiency and couch surfing are shared amongst many people who are homeless or at risk of homelessness, these fears are exacerbated for people with HIV due to the unique health challenges they face. For instance, for Frank, who spent several years living on the streets, homelessness and its transient nature – when to eat, where to sleep – were detrimental to his physical and mental health:

And when I was living on the street I did find that quite stressful sometimes, like oh when can I eat today? Where am I going to sleep tonight? … I just found that too hard and after being positive fourteen years, you know, you, I for me I know I have to have? Things, you know I have to keep my housing … Because I know emotionally and the stress of being homeless plays a big factor into my health and I know the worrying and the stress lowers my immune system and if I can’t have a place to cook my own healthy meals and I didn’t have a place to sleep I know my health would be a lot worse. (Frank)

While housing precarity can generally be detrimental to one’s health, people with HIV who are at risk of homelessness can have unique health concerns that can be challenged by precarious housing, such as organizing readily accessible health care and maintaining complicated treatment regimes.

(Un)healthy Housing, HIV, Safety and Social Exclusion

As is the case for many people living in unstable or precarious housing situations, the participants in our study had also experienced living in neighbourhoods that they characterized as “unsafe”. This includes poorly maintained living environments, overcrowded buildings and neighbourhoods in physical decline, with reputations for violence or crime, or located far from cultural or social amenities that create social cohesion. Moreover, participants who lived in physically unsafe housing reported a decline in their mental health which they attributed to poor living conditions, and expressed how these conditions made them fearful, depressed or hopeless. For people with HIV, the notion of housing safety goes beyond physical safety, encapsulating one’s physical and mental health and their immediate environment. Unsafe housing can intersect with experiences of stigma, discrimination, social isolation and social exclusion experienced within their housing environments as well as in their daily lives.

Health, housing and safety

Participants discussed feeling emotionally unsafe in both their homes and their neighbourhoods. Shared concerns included living in housing and/or neighbourhoods that had drug, criminal or violent activity that in many instances resulted in a fear of their physical safety:

When I moved into Toronto Housing as well that was kind of a negative experience … it was very unsafe. I lived there for a year and eight months and um my partner was robbed in the elevator, I was almost raped in the laundry room, you know you couldn’t even do the laundry; it was scary. You couldn’t even go out after dark so if it was nine at night and I needed something from the store I wouldn’t go out. So it was like I was trapped in my house and there were a lot of people who used drugs, a lot of drug dealers in that place where I lived. (Shanthi)

Not only did Shanthi’s experience living in an unsafe neighbourhood elicit feelings of fear, she also isolated herself as a means of protecting herself.

Living in an apartment with high drug activity can feel unsafe, particularly for a person with addiction issues that they are trying to address. Frank left his apartment to live in a shelter in order to escape the drug activity in his building, which he felt contributed to his own drug use:

In the summer, went to the res for two months because people were constantly knocking on my door um call this dealer, here come smoke a twenty piece with me, and I found I was getting too much into the crack and I didn’t like the person I was and I didn’t like who I was becoming so I said fuck it, I locked my door and I went to a shelter. (Frank)

While unsafe housing was a concern for all participants, it was a particular concern for participants who lived with their children. Parents discussed the challenges of finding secure housing for their children that was physically and emotionally safe.

When you have kids, it’s hard. It’s the kids, not safe to go in elevator. It’s like, oh my God. You have to live in a place where you feel secure and comfortable. (Marion)

The search for appropriate housing, especially when looking out for the best interests of a child, can heighten feelings of anxiety, depression, guilt and hopelessness and potentially be exacerbated by fears of being an HIV-positive parent living in what may be viewed as inappropriate housing. As Wendy explained:

I’ve heard from other parents horror stories about how social workers are called in for absolutely no reason. But they assume that you have a social problem in your family. [If there’s HIV] Yeah, like you just seem to be flagged in a way. And actually it all ties into the housing thing as well because my nightmare is that somehow, some social worker will come into our life and realize we’re living in a junior one-bedroom and that my kid would be taken away. (Wendy)

Wendy’s narrative highlights the unique housing issues that exist for HIV-positive parents, particularly the challenge of finding housing that feels safe, secure and appropriate for raising their children.

These narratives also illustrate how physical safety is an emotional experience as well, particularly how unsafe housing can elicit feelings of fearfulness, anxiety, depression, guilt and hopelessness. At this juncture of physical and emotional precarity vis-à-vis housing, other social experiences can intersect and exacerbate emotional precarity, such as stigma related to HIV and other marginalized identities.

Health, housing, safety and stigma

HIV-related stigma emerged as an overarching presence within participants’ housing experiences. Emotional safety is of particular concern for people with HIV who have histories of housing instability, economic insecurity, poverty and limited choices in safe housing (Aidala 2005). Additionally, the stigma associated with HIV can be another stressor that exacerbates physical and mental health. Therefore, HIV-related stigma within one’s housing environment can create a living space that is emotionally perilous, rather than a place of refuge that fosters physical and mental well-being.

People with HIV can face multiple forms of stigma and discrimination: HIV-related stigma compounded by stigma related to other marginalized identities, particularly racism, homophobia and living in poverty. The people we interviewed provided detailed experiences of discrimination that occurred within their housing environments including defaced property, gossip from neighbours, and being ignored or shunned in their neighbourhood. These experiences of stigma and discrimination shaped their understanding of safe housing as well as the way in which unsafe housing resulted in housing instability and social exclusion. Maxine articulated this simply and powerfully:

You’re kind of shunned. People actually cross the street and walk on the other side of the street. (Maxine)

HIV-related stigma also intersected with other forms of discrimination that resulted in exacerbating housing concerns. As Hope explained:

Well, before I started working and when I was looking for an apartment I got turned down at several places because what they actually said to me was you don’t have a job, you’re on ODSP, you don’t have credit rating … Other places they tell you oh are you gay, we don’t, we don’t, one lady actually asked me if I was HIV-positive because they don’t, they don’t uh I think what she was actually saying to me is that she doesn’t want anyone who are positive living in the building … I felt dirty, I felt nasty, I felt like, like an outcast. I didn’t feel like a whole human being … I actually kept it to myself because I didn’t know how to deal with it, this is actually the first time I’m speaking about it and um because I felt ashamed to know that I can’t live in a building that I like because of my status, because of my HIV status. [I – And how did that make you feel?] Like lesser being. I didn’t feel like human at all. (Hope)

HIV-positive participants also discussed the challenges of establishing a sense of community in their neighbourhoods due to stigma. Participants who lived in rural or small communities discussed both the familial environment of smaller communities, which may contribute to a sense of community, and also the fear of their status being disclosed and the resulting potential for discrimination.

Living in an environment where the “whole community knows you” required Robert to navigate his life so as to avoid discrimination, such as going to health care facilities out of town to avoid disclosure of his status:

So we’re very conscious of you know there are certain things – you know we’d rather take the extra trip out of town because everybody that works in the hospital lives right here … I know all the doctors, all the nurses and secretaries, even the maintenance guy lives right up the street. Like they all know me and as soon as one finds out the whole community like you know you go over to the coffee shop across the street, that’s just a gossip centre. Everybody sits there and talks about everybody. Like if you want to find out anything about anybody you go there and you find out you know. Like if they don’t know it, they’ll make it up. (Robert)

As Robert’s narrative illustrates, simple acts such as going to the doctor or getting medication can create an environment where HIV-positive people fear that their health care practitioners – who are also their neighbours – may reveal their status to others within their community, which may lead to stigma.

Stigma within housing environments was noted in urban communities as well. Although participants were appreciative of supportive housing environments designed for HIV-positive people, HIV-designated housing also contributed to HIV-related stigma. Some participants noted that living in HIV-designated housing may potentially disclose their seropositive status, which could contribute to enacted and/or anticipated stigma. Other participants discussed how HIV-designated housing might fuel the prejudices that some people may hold towards public housing or people with HIV. Actions from neighbours opposed to HIV-designated housing could potentially contribute to experiences of stigma.

Bill discussed how violently his neighbours reacted towards HIV-designated housing being built in their neighbourhood. Living in a neighbourhood where neighbours actively oppose HIV-designated housing may make those living in such housing feel unsafe:

I know when my building was put up, the building beside us is Toronto housing and the tenants there were throwing rocks at the construction workers because they found out it was going to be a building full of AIDS patients, they didn’t want it built. (Bill)

For HIV-positive parents with children, living in HIV-supported housing environments may also expose their children to stigma. Melanie discussed her experience of moving into supportive housing, which inadvertently disclosed her status to her neighbours:

When I moved into supportive housing, my kids really got affected by that because it was oh those people have AIDS and you know my kids at this school and everything until I moved out of the apartment building and then it was fine that my kids weren’t getting bullied. (Melanie)

Knowledge of Melanie’s status fuelled discriminatory behaviour towards her and her children, forcing her to move in order to protect their safety.

Stigma within their residential communities created an unwelcoming environment for many of the participants we interviewed. Stigma kept some participants isolated within their neighbourhood out of a fear of disclosure and anticipated stigma. Other participants were forced out of their neighbourhood in order to avoid discrimination from their neighbours. For the people that we interviewed, experiences of stigma disrupted feelings of home within their housing environments, even when their housing environments were physically safe, affordable and stable.

Health, housing, safety and social isolation

Participants also shared their experiences of social isolation. Social isolation was described as a safeguard: a means of protecting oneself from physically or emotionally unsafe neighbourhoods. It was also discussed as a result of being ostracized within a stigmatizing living environment. This was poignantly illustrated by Jim, who stated:

I keep to myself. And for fear of, I’ve heard the stories, I’ve heard people say oh the faggot down there has HIV, stay away from that queer and things like that so as I said I just clam up, I don’t even associate with many people, I don’t. hi and good-bye … I’m not comfortable going out. And you know I’ve never been this way before, you know, I was always right in the thick of things. I was quite the extrovert. (Jim)

Jim’s narrative illustrates the interconnection between healthy housing, safety, stigma and social isolation. For people with HIV, healthy housing can mean living in housing environments that are physically and emotionally safe and that address stigma and social isolation.

Some participants isolated themselves within their apartments to protect themselves from violence, crime or drug use within their neighbourhoods. Stan, who lived in an apartment building with rampant violence, isolated himself within his apartment to feel safe:

I don’t really fear for my life maybe its cause I’m not really all that afraid to die if I have to but not that way. If I choose to jump off of that railing that’s one thing but I’d be foolish to do it. But just to be shot because I happen to be in my apartment, that’s ridiculous or knifed because they think I’m someone else or any of the other bullshit that goes on. So I just you know as I say, I’ve become not a shut in so much but I go into my apartment and close the door and I’m in my own little womb room. (Stan)

Though Stan described his housing as a “little womb room”, illustrative of a safe, protective environment, later in his narrative he discussed the fragility of his health as he got older and his fear of living alone with his advancing age:

The problem is that now, now that I’m what’s the word, this age, this fragility that I really don’t like, over which I have little control or seem to have little control now, that really bothers me because I am alone. When I sort of when those drugs make me pass out I mean I would literally stand up to answer the phone and I would find myself in a heap on the floor and I thought what, you’re alone. I mean it would take them days to figure out that you’re, you know, that something was wrong. That bothered me … I mean I could be lying there for days and nobody would know the difference. (Stan)

Stan’s housing environment may have provided some semblance of security from the chaotic nature of his building, but it also isolated him from the social and emotional support he so desired in his advancing age.

For other participants, social isolation was a safeguard from stigma. After experiences of HIV-related stigma in his previous community, Robert used social isolation as a strategy to protect himself and his family from disclosure of his status, and anticipated stigma. He also taught his children to engage in this protective practice of social isolation, for instance, having the children associate with friends outside of the community, keeping their family lives private:

We tend to explain to them [his children] that it’s better to associate with children outside of your community because your home is your private life and your family is the only one you are ever going to depend on and you need to isolate yourself … I don’t hang out with anybody in this community either, well one person but other than that any of the people I associate with are … I don’t let the kids hang out with anybody in the neighbourhood, like not even the neighbour kids. (Robert)

Yet he also discussed the drawback of using social isolation for protection: Robert and his wife were hypervigilant in maintaining their privacy, with the family reducing their public socialization.

While these participants framed social isolation as a choice, or as a protective method of mitigating stigma, their narratives suggested that isolation was an adaptation to unsafe and stigmatizing housing environments which offered limited options for healthy housing.

Healthy Housing Means

The narratives of the HIV-positive individuals we interviewed demonstrated that healthy housing is more than just “a roof over your head”. Healthy housing for people with HIV should address financial and social concerns to ensure stability, attend to their physical and emotional safety, be non-stigmatizing, and foster social support and a sense of community. Moreover, safe, secure and supported housing can facilitate access to health care, assist in maintaining treatment regimes, support engagement in activities that can facilitate health, and foster physical and mental well-being. Participants shared their experiences of healthy housing – housing safety, housing stability, economic security and socially inclusion – which they considered facilitators to their health and well-being:

Achieving housing safety

For participants, healthy housing provided a sense of safety, such as an environment that was physically healthy, well maintained and that addressed neighbourhood overcrowding and violence. Participants also discussed healthy housing as a safe space that provided them with a positive outlook regarding their health and improvement of their life circumstances. For people with HIV, safe housing could be a building block to better living.

Moving into a safer living environment allowed Roland to focus on his HIV illness rather than his housing. Living in housing that felt safe allowed him to feel physically stronger, mentally stable and contributed to his well-being:

My mental health changed and also my physical health changed. Yes, I started to look better physically and mentally I start to think clear, I have my own space, I have my own time. I became more focused and I started to look for other problems like how to deal with my HIV rather than housing. I felt more safe towards housing, nobody knock on my door or somebody will bash me or ask me for money or something like that so feeling secure and have my own kitchen and my own space. I start to feel much more stronger and more mentally stable and then I focus on other issues – education and work instead of thinking of my depression, my death. I start to think of the future. (Roland)

Maintaining housing stability

Participants also linked healthy housing, to housing stability. Within these narratives, housing stability was framed as beneficial to overall health. For people with HIV, housing stability was seen to reduce stress, facilitate medication adherence, support harm reduction and foster mental and physical well-being.

For Frank, who had a history of homelessness, housing stability reduced the worries that can come from housing transiency:

Yeah I’m happy knowing I have an apartment where I can go home and sleep … I’m not constantly worried about where am I going to eat? Where am I going to sleep? (Frank)

For Bill, who had a history of addiction and depression, housing stability was a starting point for mental health recovery:

Oh yes, oh yes. Again I go by having the stable housing that I did have, and having it available to me was a basis point for me beginning that journey to recovery. (Bill)

Securing economic security

For the HIV-positive participants in our study, economic security and housing stability seemed to go hand-in-hand, with economic security being vital to achieving housing stability, and housing stability being a foundation for securing long-term economic security. For instance, Bill regarded housing stability as the impetus to establishing financial stability:

I feel very stable. No worries, I’m comfortable. You know I could always do with more money, but because of the stability it’s allowed me to be a bit more stable financially and being able to plan things out like buy bulk, plan for the future so the spending isn’t so bad and to be able to have that extra money to occasionally be able to go out to a movie or something. But it’s still a rare situation because money is so tight but I have noticed that being in a stable situation there is the ability to put a few bucks aside for Christmas or something, situations like that, it’s easier to do. (Bill)

Housing stability may also act as the foundation for self-improvement. For Tim, once his housing was stable, it allowed him to go back to school and return to work:

So I went back to school, went back to work so once your housing situation is stable you can have a lot of time to work on something else and then from there I got a job. (Tim)

Feeling socially included

When discussing their ideal social housing environments, many of our HIV-positive participants chose socially inclusive ones. Social inclusion embodied close proximity to social supports such as supportive friends and family, instrumental supports, which included ASOs and other community organizations that foster linkages with other people with HIV, and other supports, inclusive communities where they did not experience stigma and social environments that fostered a sense of community. For these participants, housing played a pivotal role in reducing social isolation and fostering social inclusion.

Some participants cited their neighbourhoods as a source of social inclusion. For Mark, living downtown meant closer proximity to support services, including community services that facilitated connections with other people with HIV:

I think the one positive thing is that because I was downtown, I was connected to different social services and agencies that provided that kind of support … I was able to connect with other people with HIV and to be able to share experiences and stories in a way that helped me understand my own situation. So after that, that was like 1994, I just began to rebuild my life. (Mark)

Meredith highlighted how living in well-maintained housing can create a sense of community and support:

Just the funding is really important. It’s just like maintaining these buildings, ‘cause they’re so essential to people. They’re a source of community, they’re a source of support, they’re a source of shelter. They’re not just, like, a roof over your head, it’s more than that. And to get that community, to get that positive feel, to give you that, uh, positive place, they have to be funded. Like living in something that’s falling apart brings people down and it hurts the community. (Meredith)

For Roland, living close to services and being able to interact with his neighbours relieved stress and helped him “feel alive”:

Here the housing plays a great role. I live in a neighbourhood close to the coffee shop so on a nice day I can go for a walk and I consider that a social event because it relieves all the stress and you feel you are alive and interacting with people. (Roland)

For many participants, supportive family and friends who knew their status helped them live positively with HIV. For Julie, the women that she met at a camp for HIV-positive people became her family. So much so, that she moved from one city where she lived alone, to another so she could be closer to them:

I wanted to give my notice and move to [city] and because I just felt like my family and I have all these friends there. (Julie)

These narratives suggest that for people with HIV, housing becomes the foundation from which they rebuild their lives, maintain their health, engage with social supports and connect with their community. Thus, healthy housing transcends a physical place and becomes an emotional space that can nurture physical and mental health and alleviate social isolation and facilitate social inclusion.

Discussion

The findings from our qualitative analysis of the housing experiences of HIV-positive individuals living in Ontario highlight the complex interconnections between housing and health. While some of these findings may apply to other populations who experience precarious housing, these findings also identify salient concerns for people with HIV, including relationships between HIV-related illness, economic security and housing stability; precarious housing and health maintenance for people with HIV; and the relationship between HIV-related stigma and healthy housing. Echoing Libman, Fields, and Saegert (2011), although these interviews focused on housing, our findings reveal that multiple SDOH interconnect with housing, including income, social and physical environments, and social inclusion. Findings from our qualitative analysis echo those found in the PSHP quantitative analysis, namely that physical and mental health-related quality of life is linked to one’s satisfaction with material (i.e. physical and structural aspects), meaningful (i.e. experiencing a sense of home), and spatial dimensions (i.e. location relative to services and facilities) of housing (Rourke et al. 2012). Particularly, these stories provide a nuanced understanding of healthy housing. In order to obtain and maintain stable housing that fosters physical and mental well-being, these narratives suggest that housing must be understood as being more than just physical shelter. Healthy housing encompasses the physical, emotional and social spaces in which housing resides. Healthy housing serves as the foundation for home and community.

The narratives of our study participants illustrate the challenges people with HIV can experience in their search for healthy housing. Oftentimes, affordable housing, including subsidized housing, is located in socially deprived neighbourhoods: neighbourhoods in physical decline, lacking in public transit and far from social amenities (Pickett and Pearl 2001). Limited access to social goods can dramatically shape neighbourhood cohesion, safety and security (Saegert and Evans 2003). Affordable housing options can often be poorly maintained and physically inhospitable, particularly for a person with a chronic illness like HIV. Unsafe housing can also fuel a myriad of risk factors that directly or indirectly influence health outcomes. For people with HIV whose life is dependent on consistent care of one’s health, living in socially deprived neighbourhoods can challenge health maintenance as well as exacerbate existing health concerns.

Findings from our study also illustrate how social exclusion can operate within the context of healthy housing for people with HIV. Popay et al. (2008) have framed social exclusion as a dynamic, multidimensional concept that encompasses multiple SDOH, including physical environments, social environments, income and social status and social support networks. For people with HIV, this multidimensional exchange can occur in various ways. HIV-positive individuals may lose the sense of community they had before their neighbours knew about their status. Consequently, they may also choose to isolate themselves to avoid stigma, which removes them from supports they may need to establish a sense of community and home (Carr and Gramling 2004; Ware, Wyatt, and Tugenberg 2006). Our participants’ narratives highlight the ways in which social isolation can be both protective and problematic. For people with HIV, social isolation can serve as a strategy to keep oneself safe from neighbourhood violence or stigma. Yet, over time, isolation as protection can become a prison, particularly if it fuels fears of stigma and amplifies feelings of peril within one’s housing environment. For a person with HIV, lack of housing supports coupled with social isolation can place them in a precarious situation if something goes wrong with their health. The constant fear of disclosure and anticipated stigma can also contribute to stress. Additionally, continuous experiences of discrimination can contribute to anxiety and depression.

Additionally, stigma can be reproduced through housing environments. As noted by Parker and Aggleton (2003), for people with HIV, stigma “reproduces social difference” that often reinforces other forms of social inequities related to race, ethnicity, sexuality, class and social standing. Experiences of stigma, such as experiences of discrimination within housing environments, can reaffirm a person’s feeling of being socially shunned and denigrated due to their HIV status. Our study findings illustrate that housing can act as a social forum where stigma can operate and further the exclusion of people with HIV. Concurrently, their social exclusion can be extended vis-à-vis the exclusionary and marginalizing practices occurring within residential spaces: precarious living conditions, poor physical environments, economic insecurity, deprived neighbourhoods, discrimination and stigmatization. Thus within housing, stigma and social exclusion can replicate themselves.

Our findings complement the current literature reporting on the relationship between HIV, housing and health, where economic stability has been linked to housing tenure, and housing security has been linked to beneficial and deleterious outcomes. These findings also contribute to the literature on healthy housing by illustrating the dynamic interchange between housing and health. At various points in the housing trajectory of people with HIV, housing can affect health, and health can affect housing. While the current literature on HIV, housing and health has principally examined the relationship between housing and health (Leaver et al. 2007), there is limited literature looking at this relationship as a dynamic interchange (Fuller-Thomson, Hulchanski, and Hwang 2000). Our qualitative analysis has highlighted potential interchanges between housing and health for people with HIV. It is through an analysis of interconnections between health, housing and other social factors – gender, immigration status, income, social and physical environments and social inclusion – that healthy housing can be understood as a dynamic interchange between multiple SDOH.

The narratives of the HIV-positive participants we interviewed provide tangible ways in which housing can be healthy, including the provision of affordable housing in close proximity to health care, service organizations, public transit and neighbourhood amenities; and the availability of housing that is well maintained and non-stigmatizing. Healthy housing requires a broad understanding of precarious housing and homelessness. Healthy housing addresses the potential variability in economic security throughout one’s housing trajectory. Healthy housing facilitates the mental and physical well-being of people, which in turn can stabilize other aspects of their lives. Healthy housing resides within close proximity to social and instrumental supports, and fosters social inclusion and a sense of community. Lastly, healthy housing can empower people to invest in their own well-being: connecting with their neighbours, developing friendships, engaging in their neighbourhood, going back to school, returning to work, creating a home for their families and caring for their health.

Conclusion

The findings from the qualitative portion of the PSHP study provide some reflections that should be considered when developing housing policies. Housing interventions should consider the other factors that determine the health of people with HIV, particularly physical conditions, social conditions and social supports and should consider housing models that address the multiple dimensions of health. As reflected in these interviews, and as substantiated by other findings from our project, a crucial concern for people with HIV is access to safe, affordable and socially inclusive housing that attends to their physical and mental well-being. These findings re-emphasize the importance of a housing policy, both nationally and provincially, that attends to the diverse needs of people with HIV in particular, as well as other populations experiencing precarious housing. Housing should be considered as more than just “a roof over one’s head”, and as something that supports one’s physical, mental, emotional and social well-being.

The strength of this study is the use of qualitative findings in order to understand the lived experiences of housing for people with HIV and their interconnections with health and well-being. These findings were also part of a larger mixed method study. Although the strength of this approach is the contribution of in-depth qualitative data that will supplement knowledge derived from the quantitative findings, the sample was derived from a subset of the original quantitative sample, and not sampled specifically for the purposes of this study. However, our sampling strategy aimed to be representative of the HIV-positive population in Ontario, and peer researchers were involved at all stages, including the analysis and writing stage, which we feel adds to the authenticity of the findings.

The narratives of our study participants identify experiences with precarious housing such as housing transiency, shelter living and housing instability due to economic instability; living in poorly maintained residences, and physically and socially deprived neighbourhoods; and experiencing stigma, discrimination and social isolation in relation to their housing. As well, the people that we interviewed shared their understandings of healthy housing: environments that foster housing stability, dwellings that are experienced as physically and emotionally safe, and housing that was socially inclusive and fostered community. From these stories, shared by people with HIV, comes an understanding of housing as more than just a physical space but also as a social and emotional place that fosters their health and well-being.

Acknowledgements

We would like to acknowledge the Canadian Institute for Health Research, the Ontario HIV Treatment Network, the Wellesley Institute and the AIDS Bureau, for funding this study. We would also like to acknowledge the support of the participating community-based AIDS Service organizations for their in-kind support and contribution to the research. Special thanks to J. Watson, M. Hamilton, D.B. Hintzen, J. Truax and the late P. White for conducting the face-to-face interviews, and whose insight and expertise have been a benefit to this study. Finally, we would like to thank the participants of this research for sharing their experiences with us.

Notes

^✠ This article is dedicated to the memory of LaVerne Monette, co-investigator with the Positive Spaces, Healthy Places (PSHP) research project, who passed away on December 1, 2010. Responsible for the Aboriginal arm of the study, she played a key role in developing the larger study. She brought to our team her life experiences as an Aboriginal woman and her passion to help Aboriginal people living with and at risk of HIV. She understood the critical role of housing in health and quality of life, and was a strong advocate for research to identify the housing needs of Aboriginal people in Ontario and for policy change that will lead to safe, stable housing for all.

1. At the time of publication, the Group of Eight (G8) countries included Canada, France, Germany, Italy, Japan, Russia, the United Kingdom and the United States.

2. In Canada, MSM is an epidemiological term used to categorize men who self-defined as gay, bisexual, or two-spirited, or men who have had sex with men.

3. In Canada, “countries where HIV is endemic” is an epidemiological term used to categorize people born in countries where HIV is disproportionate to the general population and prevalent in the female population.