“You Have to Keep a Roof Over Your Head”: A Qualitative Study of Housing Needs Among Patients With Cancer in New York City

PURPOSE:

Housing status can become compromised in the wake of financial hardship for some patients with cancer and become a source of disparity. This qualitative study describes the types of housing issues experienced by patients with cancer and survivors of cancer in New York City.

METHODS:

Semistructured interviews were conducted with a volunteer sample of 21 patients with cancer or survivors of cancer treated in New York City who reported housing needs in the period after diagnosis through survivorship. Nine supplemental interviews were conducted with cancer and housing key informants. Conventional content analysis was conducted on transcripts to create a codebook describing types of housing needs.

RESULTS:

Patients and survivors most commonly had breast (n = 9) and blood (n = 4) cancers and ranged from recently diagnosed to many years posttreatment. Twenty-nine distinct housing-related issues were identified, which were grouped into the following six major categories: housing costs (eg, rent, mortgage), home loss, doubled up or unstable housing, housing conditions, accessibility (eg, stairs, proximity to amenities), and safety. Issues were often interrelated. Housing needs sometimes predated cancer diagnosis. Other issues newly emerged in the wake of cancer-related physical limitations and disruption to finances. Needs ranged in severity and caused patients and survivors considerable burden during a difficult period of poor health and financial strain.

CONCLUSION:

This study contributes depth to current understandings of housing needs among patients with cancer and survivors by providing detailed disaggregated descriptions. We recommend increasing availability of services responsive to these needs and exploring promising options such as patient navigation and legal services. Findings also highlight the importance of creative solutions addressing ecologic-level factors such as housing affordability.

INTRODUCTION

Adequate shelter is a universal, fundamental human necessity.¹ Yet, some patients with cancer and survivors of cancer experience unmet housing needs, especially related to financial hardship. In the nascent literature on this topic, issues include difficulty paying rent, mortgage, or utility bills; utility service disruptions as a result of nonpayment; financially motivated moves; foreclosure; and homelessness.^2-8 On the basis of data from the optional social context module of the 2015 Behavioral Risk Factor Surveillance System survey, 28.2% of patients with cancer reported worrying about having enough money in the last year to pay for rent or mortgage.⁹ However, prevalence of needs reported across studies vary widely by specific issue, population, age group, and location.^6,7,10 Housing needs related to temporary relocation for cancer treatment have also been reported.¹¹

Housing could be an important source of disparity among patients with cancer. Unmet needs have been associated with missed cancer treatment appointments and delays in care.^10,12 The analysis by Gupta et al⁴ of linked population-level data sets in Washington state suggested that patients with cancer who could extract positive home equity after diagnosis were more likely to go through with cancer treatment and have better survival than those without this option. Meanwhile, Kushel and Miaskowski¹³ described the challenges that chronic homelessness posed for a patient with renal cancer, such as lacking communication channels between appointments, water for prescribed oral medications, and end-of-life options requiring money or stable housing.

Among patients with other chronic diseases, such as diabetes and heart failure, housing issues have been implicated in medication nonadherence and avoidable emergency department utilization.^14-17 Patients needed stable housing to refrigerate insulin, establish medication routines, store supplies, and have control over fluid and dietary intake.^15,16 Across diseases, health shocks and related financial strain have been linked to negative impacts to housing status, such as difficulty paying mortgage and increased risk of foreclosure.^18-22 Research on housing is robust for other disease contexts such as HIV.²³ Although some findings from other disease contexts may be applicable, few dedicated studies have examined the full range of housing issues that patients with cancer face. The purpose of this qualitative study is to describe and categorize types of housing needs among patients with cancer using the perspectives of patients with cancer and survivors and key informant service providers.

METHODS

A qualitative design was chosen given the exploratory purpose of the study and limited existing literature. Researchers were oriented by the pragmatic paradigm, which emphasizes real-world problem solving.²⁴ Questions were approached using the theoretical lenses of the social-ecological model, which contextualizes individual health and health behaviors within complex multilevel systems,^25,26 and Michael Bury’s²⁷ conceptualization of chronic illness as a biographically disruptive experience. All study activities were approved by the Institutional Review Board at the George Washington University.

Study Procedures

Semistructured individual interviews were conducted with 21 patients with cancer and survivors. Patients and survivors were recruited through oncology patient navigation and support networks from June to September 2018. Program staff shared study flyers (Appendix Fig A1, online only) in person, via e-mail, or verbally over the telephone. Flyers were also shared in public community locations. Efforts were made to purposively attain maximum variation in sampling to capture a wide range of experiences across diverse groups of patients by demographics, cancer type, time since diagnosis, geographic location, and type of need. Figure 1 illustrates the study steps with sample sizes.

Fig 1.

Diagram of study steps with sample sizes.

Interested patients and survivors contacted an author (S.P.), a public health doctoral candidate and former oncology patient navigator, who screened eligibility using a five-item questionnaire. To participate, patients and survivors had to have had a cancer diagnosis, been treated in New York City (NYC), and reported having experienced any housing need in the period from after diagnosis through survivorship. The term “housing need” was not strictly defined a priori by researchers in applying inclusion criteria. Instead, interviewees identified what constituted a housing need to them when volunteering participation. This was a deliberate choice, given poor consensus on definitions pertaining to housing instability²⁸ and the inductive nature of the study. This participant-driven approach has precedent in qualitative housing research.²⁹ Individuals were excluded from participation if they were younger than 18 years old, unable to complete an interview in English (whether because of limited English proficiency or cognitive deficits), or not community dwelling at the time of diagnosis. Recruitment challenges were anticipated given limited resources and a stigmatized topic with unknown local prevalence. Thus, no additional exclusions or quotas were applied by clinical factors or time since diagnosis. Furthermore, patients and survivors at different points along the cancer trajectory were expected to offer equally valuable perspectives on immediate and long-term housing need experiences.

An author (S.P.) requested informed consent from eligible individuals and offered the option to use a pseudonym. Participants were given a short background survey to collect demographic, cancer, financial, and housing details. Most interviews were conducted over the telephone. Three took place in person, per participant preference. Interviews ranged from approximately 30 to 120 minutes. Patient and survivor interviews were conducted as a “conversation with a purpose.”^30(p102) The chronologically structured interview guide walked participants through their experiences before diagnosis, during treatment, and after treatment completion, when applicable. The author (S.P.) ensured that all major topics were covered and asked probing questions specific to each interviewee’s situation. Interviewees were given flexibility in how they told their stories, which were not necessarily chronologic. Interested interviewees were offered referrals to navigation and psychosocial services. All participants received a $50 gift card incentive for participation.

Key informants were eligible to participate if they had professional familiarity with housing-related issues among patients with cancer in NYC. They were identified through the authors’ professional networks and by cold-contacting organizations and purposively sampled to reflect a range of relevant expertise. Nine key informants were interviewed about clients’ housing needs. Four were interviewed at the study’s inception and informed patient and survivor interview guide development. Five were interviewed after patient and survivor data collection to help validate findings. Because they were in positions to observe numerous experiences, their perspectives were used to triangulate findings from patient and survivor interviews and address gaps in sampling.

Data Analysis

Our analytic approach was conventional content analysis, which is used to describe a phenomenon for which little research or theory exists through inductive category development.³¹ An author (S.P.) routinely wrote memos during study design, data collection, and data analysis to document evolution in thinking and to practice self-reflexivity. Self-reflexivity, a core practice in qualitative research, is an introspective process used to explicitly recognize one’s own biases and positioning as a researcher to enable greater authenticity and rigor.³²

All interviews were recorded, transcribed verbatim, and stripped of identifiers. Key informant and patient and survivor transcripts were analyzed together using NVivo 11 (QSR International, Doncaster, Victoria, Australia) to create a single codebook. An author (S.P.) read all transcripts and memos before open coding. Another author (R.B.) helped develop the initial codebook by open coding three interviews. An advanced draft of the codebook was shared with the last five key informant interviewees and three recontacted survivors for feedback on its completeness, organization, and resonance. Although interview sample size was determined by resource constraints, key informant validation indicated that saturation, or near saturation, of unique housing needs was reached. Codes were refined, reduced, and categorized by conceptual similarity to create the final codebook, which an author (S.P.) applied to all transcripts. Another author (R.B.) independently coded four interviews. Resource constraints prohibited double coding of all transcripts. There was high agreement between coders, with a Cohen’s κ = 0.8. Discrepancies were assessed using coding stripes and resolved by revising coding decisions or refining code definitions. All authors reviewed the final codebook for conceptual soundness.

RESULTS

Patients and survivors (n = 21) were mostly women (76.2%), age 50 to 64 years (52.4%), and black (71.4%). Most rented their homes (71.4%) and were most frequently diagnosed with breast cancer (42.9%; Table 1). Key informants (n = 9) reflected diverse expertise such as oncology administration and housing advocacy. Patients, survivors, and key informants mentioned 29 distinct concerns related to housing and living situations in the period after cancer diagnosis, which were broadly grouped into the following six often interrelated categories: housing costs, home loss, doubling up or unstable housing, housing conditions, accessibility, and safety. Cancer created or worsened housing needs by destabilizing finances and causing new health limitations with implications for living spaces. The housing needs of some patients and survivors preceded or arose independently of their cancer diagnoses. Housing concerns described by interviewees are discussed in the following section and listed with illustrative examples in Table 2.

TABLE 1.

Interview Participant Characteristics

TABLE 2.

Types of Housing Needs Described by Patients With Cancer or Survivors of Cancer and Key Informants

Housing Costs

Housing cost concerns were frequently described among patients and survivors and key informants alike and escalated into other types of housing needs when unresolved. Concerns ranged in severity, from worry but low danger of falling behind on bills to inability to pay housing bills resulting in home loss. A minority had difficulties paying rent unrelated to cancer. More typically, patients and survivors were unprepared for the financial burden of maintaining their housing during cancer treatment when faced with income change or added expenses. One participant prioritized rent over expensive insurance premiums because “you have to keep a roof over your head.” Utility bills were also a concern. The two participants who were homeowners at diagnosis both struggled with mortgage payments, and one struggled with paying for needed upkeep. Disputes with building management about housing payment balances were a distinct but uncommon issue among renters in this sample and unrelated to the cancer diagnosis. Patients and survivors reported borrowing money, selling possessions, working throughout treatment, and otherwise sacrificing to pay rent or mortgage.

Home Loss

Instances of home loss tended to follow difficulty with housing costs, although one participant left her home during treatment as a result of a relationship ending. Even in instances where patients and survivors did not face eviction or foreclosure, the possibility created worry once they were unable to keep up with housing costs. Participants were often able to forestall eviction through various means of obtaining rent money or going to housing court. In one instance, a participant described being too tired to handle matters and was temporarily evicted in the period that she was receiving chemotherapy for breast cancer, although she was unofficially allowed to return. Some patients and survivors voluntarily gave up their homes without formal eviction proceedings because they anticipated not being able to pay rent for a prolonged period. Both homeowners interviewed lost their houses after falling behind on mortgage. One of these participants temporarily saved her home from foreclosure after an initial cancer diagnosis but lost it after she experienced a disease recurrence and subsequent income loss years later.

Doubled Up or Unstable Housing

Patients and survivors who did not have their own place to live were either already living with others before diagnosis or were taken in after losing their housing, as described in the previous section. Some made financial or other contributions to the host friends or family. A participant with uterine cancer expressed a representative sentiment: “I was just grateful to have a place to lay my head. You know? I wasn’t in a shelter or anything like that.” Key informants, patients, and survivors described the phenomenon of becoming stuck and unable to leave doubled up situations because of cancer-related physical limitations that hampered financial independence.

Some patients and survivors reported good relationships with their hosts and enjoyed caregiving support. There were also reports of difficulty living with hosts who were treating them unkindly, no longer welcoming them after a prolonged stay, invading their privacy, using drugs, or having behavior fluctuations related to mental illness. In extreme cases, hosts asked patients or survivors to leave or set a deadline for moving. Some participants felt uncomfortable with the guest dynamic over the long term and longed for their own place where they had more control, privacy, and independence.

Homeless shelters were typically described as an unfavorable or scary option. Patients, survivors, and key informants cited concerns such as cleanliness, stress, and shelter protocols incompatible with medical needs. The one respondent who stayed in a shelter after experiencing foreclosure had a letter written describing her medical needs and was placed in a private room that she viewed as “beautiful” and “ideal,” with cleaner conditions than her previous situation. None of the patients or survivors interviewed were chronically homeless. However, key informants reported working with such populations who sometimes had concurrent behavioral health and drug abuse issues.

Housing Conditions

Deficient housing conditions included problems with mold, rats, roaches, plumbing, broken doors and elevators, dirty common areas, insufficient heat, poorly maintained buildings, and noisy households or neighborhoods. Overcrowding frequently co-occurred with doubled up conditions, such as staying on a couch in a living room or in a bedroom with multiple children. Some patients and survivors suspected that hazardous exposures in their homes, such as mold and asbestos, contributed to their cancer, severity of symptoms, and other medical conditions. Patients and survivors cited immunocompromise and fear of cancer recurrence in describing heightened concerns about general cleanliness and exposures. Although poor conditions often preceded and occurred independently of participants’ diagnoses, cancer symptoms and treatment adverse effects made problems such as lack of heat or overcrowding more difficult to endure.

Accessibility

For some, cancer imposed new mobility limitations as a result of neuropathy, balance impairment, fatigue, and pain. Others had preexisting accessibility issues from comorbidities. Limitations made it hard for those living in walk-up apartments with no or broken elevators to accomplish their activities of daily living. One participant mentioned adjustments made within the home to deal with decreased ability to reach after surgery. To a lesser extent, patients and survivors described accessibility of neighborhood amenities and the terrain around the home.

Those from out of state and those trying to relocate reported accessibility of medical care resources as a consideration in deciding where to live. Patients expressed the desire to be close enough to continue seeing their doctors and wanted to receive NYC’s comparatively generous medical coverage. An oncology administrator described interstate migration for health benefits to be a pattern among patients. One participant with greater resources received part of her cancer care in another state as a result of treatment preferences and reported incurring hotel costs while staying near the treatment facility, but it was not seen as a large burden.

Safety

Safety concerns were discussed in the context of neighborhood crime, building security, hazards, and behavior of others connected to the home. Building security concerns included inadequate doors and drug dealers in the building. Deficiencies in building conditions such as fall hazards and old wiring made some patients and survivors worry for their safety. New mobility limitations in unsafe homes or neighborhoods raised the concern of being able to escape quickly in case of an attacker, fire, or other danger. An oncology administrator also described safety as a critical issue for patients who lived on the street.

DISCUSSION

Findings from this study confirm previously documented housing needs among patients with cancer, such as concerns about paying for housing costs and the threat of home loss, while also illustrating a broader range of issues than previously described.^2,3,5,7,33 Interview findings illuminate challenges around unstable living arrangements, new accessibility needs, poor conditions, and other issues with specific implications for people living with cancer.

Our results supplement research elsewhere in the country that discuss housing needs predominantly in the context of homeownership.^2,33 Our sample consisted mostly of renters, reflective of the fact that 67% of NYC households rent their homes compared with only 37% in the United States overall.^34-36 We also describe the needs of patients with cancer and survivors in a housing context where there is a crisis of affordability and households with little economic buffer are especially vulnerable to health shocks.^10,37,38 As one participant expressed, “they say a lot of people are one or two paychecks away from being homeless.”

Lack of affordable housing was an underlying driver for housing needs beyond just cost. Several patients or survivors tried to look for new residences, but their efforts were largely met with frustration. High housing costs coupled with destabilized finances kept them stuck in overcrowded, physically substandard, unsafe, and doubled up situations that were not meant to be permanent. Indeed, these participants’ experiences are reflective of larger trends in affordable rental stock shortages. NYC reports increasing numbers of rent-burdened households, large losses of rent-stabilized units, and a ballooning homeless population, with only 500,000 rental units affordable to the city’s one million lowest-income households in 2015.^34,35,38 Evidence from this study lends additional support for the urgent need to create more affordable housing and expand rental assistance and homelessness prevention programs, particularly targeting those experiencing health shocks.

Our findings of complex housing issues among patients with cancer suggest that current resources are inadequately addressing needs. Others have indicated the promise of patient navigation and medical-legal partnerships and the need to explore innovative housing solutions.^{7,8,10,12,39,40} Despite their high importance, housing concerns are not typically discussed with providers.⁷ Awareness among oncology clinicians and scaled up resources for supportive services are necessary to enable early screening and appropriate referrals.

This study had several important limitations. Both cancer and housing needs are stigmatized topics, raising the potential for social desirability bias. Diverse patient and survivor experiences were elicited in this study, but the sample was not representative of all patients and survivors with housing needs in NYC. Interviewees reflected a volunteer sample, introducing selection bias. Furthermore, no patients or survivors experiencing absolute homelessness were interviewed. Limited English-proficient individuals were systematically excluded from recruitment. Supplemental interviews with key informants, who described a broad range of patient experiences, partially addressed sampling limitations. Key informants expressed that excluded populations may have severe needs, indicating an important area for future study. Additional research should also be conducted to validate results and thoroughly examine specific issues described in this initial study. Future quantitative studies could estimate the prevalence of specific issues and variations in housing needs by geographic, demographic, or clinical characteristics. Attempts to transfer our NYC-based findings to other contexts or patient or survivor populations must be done with caution, because housing and health policy landscapes vary widely across the United States. However, results may have relevance to metropolitan areas with similarly large populations of rent-burdened households, such as Los Angeles and Miami, and to those with affordability pressures, such as Washington, DC, and Honolulu, that extend housing cost burden higher up the income scale.³⁵

This study is the first, to our knowledge, to provide a dedicated description of types of housing needs among patients with cancer and survivors of cancer in an urban setting. Housing concerns inflict considerable burdens on patients and survivors on top of the already substantial burden of managing a serious illness. With a better understanding of unmet needs, policymakers and multidisciplinary service providers can act to improve resources and supports for this vulnerable population.

Appendix

Fig A1.

Study flyer to recruit participants.

AUTHOR CONTRIBUTIONS

Conception and design: All authors

Financial support: Serena Phillips

Administrative support: Serena Phillips, Cherise B. Harrington, Sarah E. Raskin

Collection and assembly of data: Serena Phillips, Francesca M. Gany

Data analysis and interpretation: All authors

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

“You Have to Keep a Roof Over Your Head”: A Qualitative Study of Housing Needs Among Patients With Cancer in New York City

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jop/site/ifc/journal-policies.html.

Serena Phillips

Research Funding: Pfizer Foundation

Sarah E. Raskin

Consulting or Advisory Role: DentaQuest Partnership for Oral Health Advancement

No other potential conflicts of interest were reported.