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Published in final edited form as: J Hosp Palliat Nurs. 2022 May 5;24(4):232–239. doi: 10.1097/NJH.0000000000000870

Affordable Housing Specialists’ Perceptions of Advance Care Planning Among Low Income, Older Adult Residents: A Qualitative Study

Christine C KIMPEL 1, Abigail C JONES 2, Amy R GUIDERA 3, Cathy A MAXWELL 4
PMCID: PMC9260882  NIHMSID: NIHMS1782449  PMID: 35766946

In 1991, the United States (USA) Congress passed the Self-Determination Act, mandating that health care professionals offer Advance Care Planning (ACP) during hospital admissions.1 Unfortunately, only one in three USA adults have completed Advance Directives, and low socioeconomic status (SES), older adults are 33% less likely than high SES to participate in ACP.2–4 Many low SES, older adults depend on affordable housing organizations, which provide income-adjusted housing with government assistance (i.e., 30% of monthly income). Affordable housing specialists serve low SES, older adults and occupy a range of roles (e.g., property management, health coordination). This study explores the experiences of housing specialists to gain a better understanding of the unique challenges, environment, and planning behaviors of the older adult residents in affordable housing.

Background

ACP is an ongoing, iterative process of health behavior change that supports patients and loved ones in future health care decision-making.5 During this patient-centered process patients may clarify end-of-life care values, beliefs, and preferences through discussions and documentation. ACP patient and family benefits include increased quality of life, reduced decisional conflict, and increased hospice and palliative care use.6,7 However, these benefits are often not as accessible to low SES, older adults compared with high SES, older adults.8

As adults age and the risk of injury and illness increases, their home and community environment become increasingly important.9,10 The World Health Organization (WHO) advocates for creating Age-Friendly Environments (AFE) with adequate social (e.g., Respect and Social Inclusion) and physical (e.g., Housing) resources to support equitable and high-quality aging. Older adults rely on resources and services that are close to home, e.g., health care, grocery stores, safe walking paths, and community centers.11 Such services provide opportunities to access health-protective resources, preserve physical and mental function, and engage socially. Although affordable housing provides individuals with a stable and cost-effective place to live, investigation is warranted to understand the persistent challenges and baseline ACP behaviors after housing is obtained. While prior research has advanced the understanding of ACP among low SES, older adults,12–14 no studies have explored AFE factors with ACP.

To address this gap, affordable housing specialists may provide important insight. Housing specialists are persons employed by affordable housing organizations. These individuals possess unique perspectives and expertise gained from daily, and often very personal, interactions with very low income, older adults. The purpose of this preliminary qualitative study was to explore the perceptions of housing specialists to improve the understanding of affordable housing resident characteristics and challenges, ACP use and health care decision-making, the housing specialist role, and the housing organization structure and environment.

Design

A qualitative descriptive design was used to explore the individual perceptions of affordable housing specialists, hereafter referred to as specialists, in Nashville, Tennessee. Data were collected and reported following the standardized qualitative reporting guidelines (COREQ).15 The study procedures were approved by the Institutional Review Board (IRB# 210905).

Methods

Research Team

All team members were female. The primary investigator (PI) (CK) was a doctoral nursing student, whose research focused on AFE factors with ACP. The PI did not know four of the specialists but had brief contact with one for a separate project. The second author (ACJ) was a trained research assistant with experience in qualitative data analysis and a graduate degree in education. The third author (ARG) was a doctoral-prepared nurse practitioner. The senior investigator (CAM), a nursing research faculty member, partnered with a local affordable housing organization to implement a frailty-focused wellness program for older adult residents.

Sample and Recruitment

Specialist participants were purposively sampled from a list generated by the senior investigator (CAM) from two affordable housing organizations. These specialists worked daily with low income, older adult residents (aged 40+).16 Both housing organizations maintained hundreds of rentals and functioned independently from one another. Organization #1 operated strictly as a housing provider while organization #2 also supported the health and wellness of their residents through service connections.

Participants were contacted by email, inviting each, if interested, to respond and schedule a telephone interview. Participants were included if they were specialists and were willing to participate in a recorded, one-hour interview. Among seven specialists that were contacted, all five that responded agreed to participate in the study. Scheduled interviews were conducted at times chosen by the participants and were completed between June 30, 2020, and July 23, 2020. Each participant received a $25 gift card incentive following interview completion.

Data Collection

Following a detailed statement of the PI’s background, interview purpose, and informed verbal consent, qualitative data were collected via telephone, audio-recorded, semi-structured, one-on-one interviews in a quiet and private setting. Repeat interviews were not conducted. While not pilot tested, the interview guide was developed with expert consultation (CAM) and a literature review. Audio-recordings were transcribed verbatim through Rev.com.

Data Analysis

Transcripts (N=5) were analyzed using thematic content analysis. Two independent coders (CK and ACJ) inductively coded each line of data, with subsequent phases of coding and category creation (Excel). The two coding sets were synthesized into a single codebook and iteratively and individually reapplied to the transcripts. Discrepancies were settled between the two coders, and when agreement could not be reached, differences were resolved with a third (ARG) and fourth (CAM) team member. Quotes were organized by code. Using the Ecological Model of Active Living (EMAL), each code was assigned to a tentative ecological level (e.g., behavior setting) (Figure 1). The EMAL, a behavior-change model, was developed from previous obesity-reduction research via an ecological approach, considering an individual’s behavior as embedded in a physical and social context.17 Refined codes were grouped by the appropriate EMAL level to visualize possible relations among codes. Final themes and definitions emerged through iterative review of the codes, quotes, and EMAL placement.18,19

Figure 1.

Figure 1.

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The concentric circles of the ecological model represent environmental and personal levels. The location of the bolded study themes (right side) within the model are connected by lines.

Results

Characteristics of the participants and interviews are described. Specialists included four women and one man. Time in a specialist role ranged from 2.5 to 12 years. Interview duration ranged from 28.26 to 42.43 minutes (median: 36.23).

Content Analysis of Participant Interviews

Four themes emerged representing an overall picture of affordable housing specialists’ perceptions of low income, older adult residents: 1) residents as survivors, 2) planning as a luxury, 3) the role of specialists as resource navigators, and 4) housing as a “safe haven” (Figure 1). Quotes are presented to support these themes and sub-themes.

Residents as Survivors – Intrapersonal and Behavior Setting Factors (EMAL)

“To survive” referred to continued function despite a hardship.20 (Survive). Subthemes included daily challenges of physical health, social isolation, and insufficient financial and material resources. One participant described residents’ struggles: “…They’re in survival mode. It’s not because they didn’t want to [plan], but it’s because they’ve been in survival mode.”

Participants described the physical and mental health challenges of residents over the age of 40. A specialist described breathing problems, “And some of them have like health issues like COPD.” Another expressed the health burden and early mortality experienced by older residents: “…Residents…in their late forties, early fifties, have had such a plethora of health issues. Research shows us that people who are homeless or transition from homelessness, tend to have shorter lives…” One specialist also discussed the impact of residents’ life-long struggle with addiction: “…One of the number one thing we deal with is, just addictions…They’ve lived a life of, just abusing different things…alcohol, drugs, pain pills.”

Specialists commented on the lack of socialization: “…not having a consistent group of family or friends that you can hang around.” One specialist identified that “morale” may be low for older adults “because they don’t really have anybody.” Another compared caring for a parent to that of the residents: “…that’s what my mom has. But these men and women that live in our houses, there’s no one checking out on them.” One specialist identified the causes of isolation: If you’ve lived a certain lifestyle…all those friends are either deceased or in jail, and if you’re no longer in that environment, then you don’t have new friends…[and] COVID doesn’t help.” One specialist explained how residents may lose trust over time: “Trust is another big word…It’s part of the challenges they face because they typically don’t trust others, and they lose trust when they’ve been disappointed.”

Financial and resource challenges included three areas: financial, technological, and transportation insecurity. One specialist described residents as “not being able to budget their money.” Another discussed how residents have very little money to meet basic needs: “…[Income is] 800 to 1,200 dollars a month. If they’re in shared living, they’re only getting…12 to 15, 20 dollars food stamps for the entire month…that doesn’t count the fact that they may have medications [they need to buy].”

One specialist described the residents’ lack of technology, “There’s no WI-FI unless they provide it for themselves…the majority of them do have cell phones, but they’re working on outdated cell phones.” In addition to lacking access, specialists discussed residents’ challenges with using technology: “…they can’t order stuff from Uber [delivery]…a lot of them don’t know how to order they groceries online and get somebody to pick it up and bring it to them.”

One specialist described the difficulties of grocery shopping without transportation: “It may be hard for them to access transportation…some people can’t get on a bus…and if you’re an older person, going on the bus and going grocery shopping is not going to be a good experience.” The struggle to find a ride may require making “plans with family and friends” or may be difficult in “extreme cold or extreme heat.”

Planning as a Luxury – Behavior (EMAL)

In these data, planning emerged as a luxury, something that contributes to a sense of security but surpasses a basic need (e.g., shelter).21 (Luxury). Sub-themes included planning for funeral costs or barriers that limited health care planning or decision-making. Specialists typically referred to their role in prompting planning for death and burial: “…some people have life insurance just in case…they give us the information, so we’ll know when they do pass or let the people know that they had life insurance, so they get buried properly.” Another specialist relayed a similar understanding of the importance of life insurance: “When I first heard about that [life insurance], I said, “Wow, it’s kind of a lot,” but then it made sense when I started working with residents…and people started passing away. They had things in place for it.”

Specialists identified barriers to health care decision-making or general planning. One described health care decision-making during rushed doctor visits: “…that’s probably hit or miss on how engaged that doctor may be in their life at that 20-minute visit or the two minutes that the doctor actually sees them.” Similarly, another specialist identified that health may not be important to some of their residents: “I think some of the older ones, they do go to their doctor’s appointments, but their health, I think they don’t consider it a huge priority…I don’t know if it’s because they have a hard time getting to their doctors because many of them don’t have cars.” One specialist recalled a resident that avoided the doctor, seemingly, based on apprehension: “I had one, he had something going on with his heart and he refused to go to the doctor and I think it was because he was afraid…that it would be a very serious condition.”

One specialist described residents that don’t make a will because they feel like they have little or nothing of value: “…some of them feel that they don’t have much to leave anyways. So, they don’t think about a will because it’s like I don’t have nothing [to] give…” Another specialist described a lack of motivation: “when we asked about, what would happen if he should pass away… He’s like, “I don’t care about anything. I’m dead.” A specialist expressed the sentiment that planning for end-of-life care seems superfluous to residents that are focused on survival: “They don’t understand the importance of wills and the care decisions, nor have they thought about those…It’s not because they didn’t want to, but it’s because they’ve been in survival mode.”

The Role of Specialists as Resource Navigators – Behavior Setting (EMAL)

Health care navigators guide patients through complex health care processes and link them to the appropriate providers and resources.22 Resources referred to a supply of materials or services that may support a person to meet their basic needs.23 Housing specialists exhibited similar practices to navigators, assessing residents’ needs and directing them to resources. Subthemes included professional background, official role and responsibility, and role conflict. Specialists described their professional backgrounds including pastoral, social work, and housekeeping. Two specialists recalled extensive prior work “…with individuals with mental health issues, substance abuse issues, and at-risk behaviors…” or “…in nonprofits, particularly around the areas of HIV and AIDS…” Prior experiences contributed to a depth of understanding, empathy, and passion that informed specialists in their current roles: “…[Residents with HIV] are very secretive of their diagnosis…before I worked at this agency, [I] used to work with the population. So…[my supervisor] gave me the caseload due to I know the sense of sensitivity.”

Official roles and responsibilities ranged from a general role to a specific service coordinator role. One specialist described a general role: “I’m their Property Manager…I’m the person they call for a lot of different things…” Another general housing specialist described the role in terms of sharing information about available resources: “If we hear of different resources out in the community, like right now with the COVID-19, [a food bank] is giving away food every week at this one particular site. We’ll try to make sure we let folks know.” Other specialists described more specific roles aligned with health initiatives: “I’m a health service coordinator…I connect them with services…dental insurance, and…health insurance. If they go to the hospital, I’ll see what they need before coming back home.”

Beyond formal job descriptions, housing specialists experienced role conflict as they were empathetic to the residents’ many unmet needs but were constrained by their official role. One specialist described the heavy workload that was at tension with the desire to do more: “…We’re managing the house…we care about the people that live there but we have [thousands of] people that we’re responsible for, I can’t get [that] involved in their lives.” When possible, specialists talked about providing support: “…Finally, I broke down and asked my supervisor. He said just this time...I ended up…[driving the resident from her cataract surgeries] twice...That’s how we get involved, I think, when they know that they don’t have support.”

Specialists, at times, described engaging residents in planning for death. One specialist described plans to integrate planning into the onboarding process of new residents: “…when they first move in…they give us information, almost like an advanced directive, on how they want us to handle their affairs if they should pass away while living with us.”

“Safe Haven” – Behavior Setting (EMAL)

“Safe haven” referred to a place of refuge or security.24 Subthemes included the organization’s mission, the positive effects of housing, and the limitations of housing. Specialists relayed the broader mission and goals of their housing organization such as “trying to prevent a pocket of poverty” by intentionally situating resident locations within mixed income areas and preserving residents’ autonomy by giving them an “opportunity to pick [their location].” One specialist discussed the impact of the organization’s mission: “when I started here, they were starting a health initiative to link the importance of health care and housing…I just really fell in love with the mission of the organization and…the services we provide.” Lastly, the shared goal of the two organizations was to “…provide them with a room forever if they need it…”

Specialists also discussed the positive effects and relief housing can bring to residents, many of whom had a history of homelessness. A specialist described the positive effect of housing: “…It’s [an] opportunity to just to be able to go home at night and lay on their own bed and not have to worry about something happening to them at night or being in the weather, cold or hot or rain or whatever it might be…” Another explained how residents may hide physical decline to avoid leaving home: “…A lot of clients I dealt with, 55 and older, they don’t let people know that they really sick because they know we’ll try to transition them into a nursing home or to the hospital. And they rather die in their unit, their safe haven...”

Specialists also discussed the limits of housing, including two triggers for termination of housing. A specialist relayed the heaviness of the decision to let people go for rule violations, the first trigger: “Sometimes that decision means they’re going to be homeless…people that blatantly just continue to do illegal things or just breaking the rules…[or] little things over and over and you finally have to say, you know what, this isn’t the right situation for you.” Another specialist described the second trigger when older adults are not physically independent: “Generally once they get into permanent housing with us, they stay until they die or ‘til they’re not physically able to stay with us and can’t live independently and have to go to a nursing home.”

Discussion

In this preliminary study, four themes emerged and are displayed in the adapted Ecological Model of Advance Care Planning: residents as survivors, planning as a luxury, specialists as resource navigators, and housing as a “safe haven” (Figure 1). Lower SES, older adults living in affordable housing may be limited by their capacity and lack of opportunities to participate in ACP. The daily unmet needs of residents are multi-level and challenge ACP initiation and maintenance by clinicians, researchers, and policymakers amid efforts that focus only on one ecological layer at a time. Challenges aside, the expert role of housing specialists and the “safe haven” nature of housing presents opportunities to promote ACP. This model may facilitate tailored, sustainable approaches using existing and novel ACP interventions. Findings revealed contextual factors in the behavior, behavior setting, and intrapersonal levels of the model, but also underscored the current gaps in the perceived and policy environment levels. These gaps may be addressed with observational and interventional research.

Specialists reported that residents with a history of homelessness tend to experience life-course disadvantage that contributes to a feedback loop of growing health, social, and resource challenges, compounded by older age. Previous literature has described similar findings of high disease burden, mental illness, substance use, and social isolation.25 The chronic stress of homelessness contributes to a higher allostatic load over time, threatening overall function and wellbeing.26 Previous ACP studies have also emphasized the all-consuming drive to survive .25,27

This study adds to the literature by contextualizing ACP as a health behavior either limited or supported by community resources. Resource deprivation limits options and opportunities that may also affect ACP use. For instance, transportation deprivation emerged as a possible contributor to health care access challenges. Prior studies have suggested that social participation and physical activity among older adults increase with closer resources and access to reliable transportation,28 thus insufficient transporation may inhibit ACP. Clinicians must exhibit structural competency by assessing each patient’s health, social, and resource challenges and utilize interdisciplinary collaboration to promote the right conditions for ACP to flourish.29

Further barriers to and facilitators of ACP were identified with the themes of housing as a “safe haven” and the role of housing specialists. Affordable housing residents may experience a modicum of housing stability despite persistent health, social, and financial problems. This housing stability provides specialists with an opportunity to build relationships and trust, assess needs, and stimulate ongoing discussions with previously homeless residents. Specialists described residents’ view of housing as a “safe haven,” promoting security, peace of mind, and, possibly, a chance to die at home, but this opportunity was offset by housing precarity.

Housing precarity, or the risk of being expelled from housing, among low SES, older adults is associated with negative consequences, highlighting the need for robust service connections in addition to housing. It was learned that residents tended to hide advanced serious illness for fear of jeopardizing housing. The literature confirms that housing precarity for older adults with traumatic experiences not only results in homelessness or institutionalization but imposes the additional trauma of housing insecurity.30 This finding suggests that the provision of housing alone is insufficient to support older adult residents with the stability necessary to age in place, thrive, and participate in ongoing ACP interactions. Rather, this finding emphasizes the need for intensive housing supports that help residents maintain their independence and increase residents’ choice over how and where they die. Furthermore, the adapted model emphasizes the multi-level nature of insecurities that reinforce a survival-mode mentality and necessitate external ACP initiation by knowledgeable clinicians and community professionals.

Housing specialists are expert navigators of community resources constrained by their workload and limited resources but may be partnered with by nursing and other disciplines to promote ACP. Specialists identified that limited time with health care providers and lack of transportation to get to their appointments may inhibit the opportunity to engage in ongoing ACP discussions. This finding corresponds with a recent report that health care providers may have little time and knowledge to meet the extensive ACP needs of their homeless-experienced patients.27 A new finding included that life insurance, a type of nonmedical future planning, was a component of onboarding discussions for new residents and a possible introduction point for ACP. Trained nurses and housing specialists may have more success holding ACP discussions in nonclinical locations such as shelters and supportive housing.27 Housing specialist positions should be leveraged as providers of ACP education for residents and as stakeholders in future efforts to improve ACP use by low SES, older adults.

Recommendations for Policy and Research

Findings highlight the need for interdisciplinary collaboration among clinicians, city planners, health departments, local universities, community professionals, and members to design Permanent Supportive Housing (PSH). PSH was intended to combine physical housing with robust services to prevent homelessness.31 PSH has been associated with modest reductions in chronic homelessness, yet policy and program barriers to adequate funding, land acquisition, service partnerships, and service delivery prevent the full realization of PSH.32,33

Policy recommendations for overcoming these program barriers include a thorough review and clarification of government and institutional policies. For instance, a thorough review of Housing and Urban Development (HUD) and the Centers for Medicare and Medicaid (CMS) may capitalize on funding mechanisms. Additionally, states should reconsider Medicaid expansion, which may cover transportation and housing costs as part of patient care for older adults under the age of 65 not yet eligible for Medicare. National government agencies, such as HUD, should improve coordination with local governing entities, non-profit institutions, and other organizations to reduce cumbersome land use regulations that prohibit the construction of affordable housing. Service coordination and housing construction should be tailored for the multi-level needs of the local populations.33Additionally, housing programs should include extensive training of ACP and Palliative Care concepts for all program staff.

Future research should investigate the optimal setting structure, service partnerships, and training programs to promote ACP in the setting of PSH. The World Health Organization’s AFE initiative offers eight dimensions that may be tested with ACP outcomes to formulate PSH setting and program organization.11 Future studies should test different service connections and delivery strategies (e.g., transportation) for user-friendliness and effects on health outcomes among residents. Recent studies have found success with lay ACP navigators; however, systematic approaches to training are needed.34,35 Future studies should test the feasibility of implementing training programs with frontline housing specialists and within PSH organizations. Future research should consider the heterogeneity of housing specialists and residents by improving sample representation and performing sub-group analyses. Future research should also include representation among rural affordable housing organizations.

Strengths and Limitations

Although these preliminary data presented a rich narrative, this study was limited by not pre-testing the interview guide, a small sample size, and not using member checking. Rigor and trustworthiness of this qualitative process was supported in multiple ways.36 These strengths included the use of an audit trail and field notes, a professional transcription service, close familiarity with the data through iterative coding cycles, and verification of the accuracy of transcripts with audio-recordings (credibility). Transferability of these results are restricted to similar housing specialists employed by similar affordable housing organizations. Specialists were purposively sampled from two affordable housing organizations that exhibited expert knowledge allowing for rich accounts of their residents. Consistent themes across five interviews enabled data saturation and supported confidence in the stability of the final themes; however, the small sample size prevented identification of negative cases (dependability). Codes with insufficient data were not included in the final analysis. Bias was reduced with a second coder and with final theme approval by all four authors (confirmability). Finally, the interview guide consisted of broad, open-ended questions to prevent the first author’s expectations from biasing responses.

Conclusion

Current ecological research and policy for very limited income, older adults fails to account for the effects of Permanent Supportive Housing on ACP, an urgent public health need highlighted by the COVID-19 pandemic. Housing specialists are an untapped resource to inform future efforts to address these shortcomings. Specialists’ expertise should be leveraged to build housing that aligns with AFE standards, with the goal to improve overall well-being of older adult residents and support planning behaviors across the lifespan.

Acknowledgements:

We want to thank the Vanderbilt University School of Nursing Graphic Design Department, Caroline Taylor and Dina Bahan, for their expert assistance with the Ecological Model of Advance Care Planning.

Source of Funding:

Christine Kimpel’s work was supported by CTSA award No. UL1 TR002243 from the National Center for Advancing Translational Sciences. Its contents are solely the responsibility of the authors and do not necessarily represent official views of the National Center for Advancing Translational Sciences or the National Institutes of Health. Christine Kimpel and Dr. Guidera are supported by the Office of Academic Affiliations, Department of Veterans Affairs. VA National Quality Scholars Program and with use of facilities at VA Tennessee Valley Healthcare System, Nashville Tennessee. For the remaining authors, none are declared.

Funding Requirement:

“The NIH Public Access Policy requires that the final, peer-reviewed journal article resulting from NIH-funded activities MUST be submitted to the PubMed Central (PMC) repository upon acceptance for publication and should be completed by at least 3 months post publication to remain compliant. This process will fulfill the requirement of being made publicly available no later than 12 months after the official date of publication.”

Footnotes

Conflicts of Interest: None.

Contributor Information

Christine C. KIMPEL, Vanderbilt University School of Nursing (PhD Candidate) and Veteran Affairs Quality Scholars (Fellow).

Abigail C. JONES, Vanderbilt University School of Nursing (Research Assistant).

Amy R. GUIDERA, Veteran Affairs Quality Scholars (Fellow).

Cathy A. MAXWELL, Vanderbilt University School of Nursing (Faculty).

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