"I'll fill in the gaps": perspectives of Home Health Aides on promoting aging in place for older adults with low incomes

Abstract

Older adults with low incomes experience disproportionate rates of cognitive and functional impairment and an elevated risk of nursing home admission. Home health aides (HHAs) may have insight into how to optimize aging in place for this population, yet little is known about HHAs’ perspectives on this topic. We conducted 6 focus groups with 21 English-speaking and 10 Spanish-speaking HHAs in Pennsylvania and New Jersey. Transcripts were analyzed using qualitative thematic analysis, and three themes emerged. First, HHAs described the uniqueness of their role within multidisciplinary care teams. Second, HHAs shared concrete interventions they employ to help their clients improve their function at home. Third, HHAs discussed barriers they face when helping clients age in place. Our findings suggest that HHAs have important insights into improving aging in place for older adults with low incomes and that their perspectives should be incorporated into care planning and intervention delivery.

INTRODUCTION

In 2020, an estimated 55.6 million older Americans were aged 65 and older, with 14% living near or below the poverty line.¹ Older adults with low incomes experience a disproportionate burden of physical and mental health conditions that impact independent function and act as barriers to “aging in place,” defined as the ability to live comfortably, safely, and independently in one’s own home and community.^2–4 Individuals with low incomes and high housing cost burden are also more likely to be admitted to nursing homes than the general older population.⁵ Programs that provide home services and care from home health aides (HHAs), such as Medicaid Home and Community Based Services (HCBS), are one opportunity to address the needs of older adults with low incomes living in the community.⁶ Home health aides fall under the larger category of “direct care workers,” along with other Nurses’ Aides (CNAs, GNAs) and Personal Care Aides. Home health aide care typically includes in-home assistance with activities of daily living (ADLs) and instrumental activities of daily living (IADLs), though specific parameters vary by state and home health agency.^7,8 Use of home services and community care is associated with reduced rates of hospitalization and nursing home admission.^9,10 Higher state HCBS expenditure and expanded service offerings are also associated with lower rates of nursing home admission among older adults who receive services compared to those who do not. This relationship exists despite a higher incidence of physical and cognitive decline among HCBS recipients.^11,12 These findings suggest that HHAs play a key role in promoting aging in place for their clients.

With growing recognition of HHAs’ close relationships with clients and families, there has been a corresponding increase in studies exploring HHA perspectives on different aspects of home care.^13–15 Yet despite the unique proximity of HHAs to their clients’ daily lives, there is little research eliciting HHA perspectives on how to optimize aging in place. Researchers have explored direct-care workers’ perspectives on specific aspects of client care, including challenges and successes when caring for clients with dementia and hearing loss in nursing homes.¹⁶ Research in the community setting has explored HHA perspectives on performing specific daily activities, such as providing food for older adults, as well as more general topics, such as ethical considerations in their work.^17,18 These and other qualitative analyses have primarily focused on HHAs’ experiences and perspectives on their own roles and on HHAs’ recommendations for improving working conditions, increasing effectiveness of care, and expanding HHA training.^19–21

However, little is known about the gaps and unmet needs that HHAs perceive in client care for older adults that, if fulfilled, could help older adults age in place and avoid nursing home admission. One qualitative study of HHA experiences during the COVID-19 pandemic detailed the many barriers and dilemmas HHAs face daily with clients, healthcare workers, isolation, and job safety, and included HHA recommendations for improving HHA safety during COVID-19.²⁰ Another qualitative study of HHAs caring for clients with heart failure focused on HHA training, daily tasks, interdisciplinary communication, and HHA comfort in their role, with the research team drawing conclusions on possible interventions for improvement in these areas.¹⁵ However, these studies did not explore HHAs’ perspectives on what interventions they believe would most benefit clients.

Prior research among home care support workers (HCSW) in Spain (similar to the HHA role in the U.S.) focused on HCSW’s perspectives on unmet needs among clients and their suggestions to meet those needs.²² Suggestions included increasing the availability of home resources for clients, including assessment and re-assessment of client needs by HCSWs, and expanding continuous education opportunities for HCSWs to better meet clients’ specialized needs. These findings suggest that HCSW have important insights into the needs of their clients related to aging in place. In the U.S., nursing home residents and their families have shared perspectives on factors leading to nursing home placement; however, HHA perspectives were not assessed.²³ The purpose of this study was to gain a better understanding of HHAs’ perspectives on how to promote aging in place among older adults with low incomes. A qualitative approach was used to address barriers, strategies, and recommendations to promote aging in place.

MATERIALS AND METHODS

Overall study design

This was a qualitative study using 6 focus groups with HHAs. The study was approved by the Institutional Review Board of the University of Pennsylvania (#831642).

Settings and participants

Participants were recruited from a large non-profit home health care agency with sites in Philadelphia, Pennsylvania and southern New Jersey via e-mail (sent to employee e-mail lists) and flyers posted at agency offices. Participants were eligible if they were currently employed as an HHA at the agency and spoke English or Spanish. Participants received a $50 debit card for participating in a one-time focus group. Participants provided written informed consent.

Data collection

The study team consisted of several interdisciplinary collaborators from both medical and non-medical fields: two nurse researchers, three clinical research coordinators, a researcher with expertise in housing and community development, and a geriatrician-researcher. From March, 2019 through May, 2019, we conducted 6 in-person focus groups at home health agency offices. We conducted four focus groups in English and two in Spanish (see Appendix for focus group guide). Focus groups in Spanish were conducted by a bilingual, bicultural Clinical Research Coordinator using materials that were translated into Spanish and back-translated into English to ensure fidelity to the original focus group guide. Each focus group lasted approximately 90 minutes and was audio recorded and professionally transcribed. Focus groups conducted in Spanish were professionally transcribed into Spanish and then translated into English. The translated English transcripts were then compared to the original Spanish transcripts by a bilingual Clinical Research Coordinator to ensure fidelity to the original content.

A semi-structured interview guide was developed including open-ended questions about participants’ experience working with older adults with low incomes. Domains included roles and responsibilities, including types of supports provided to clients; challenges clients faced while performing daily activities or living independently; and suggestions for how to improve aging in place for older clients with low incomes. Demographic data were also obtained including age, gender, race/ethnicity, years of experience in current position, and years of experience in current professional role.

Data analysis

To analyze demographic characteristics, we used descriptive statistics. To analyze focus group transcripts, we used qualitative thematic analysis with a hybrid deductive and inductive approach to coding.²⁴ First, five members of the study team independently reviewed three transcripts (GB, CH, RB, MJ, DR-F). During this review process, team members applied deductive codes using constructs from the study aims and interview guide and developed and applied inductive codes to identify key concepts.²⁵ The team then met to draft the initial coding scheme. Four team members (GB, CH, MJ, DR-F) continued to review and code transcripts independently, meeting to refine codes. Disagreements about the presence, scope, and definition of codes were resolved through discussion and consensus. Interrater reliability (IRR) was calculated for a subset of 2 transcripts (approximately 20% of total sample). Once an acceptable IRR was achieved (>0.80), the same four team members independently coded the remaining transcripts. Three team members (RB, CH, GB) developed summaries of each code with representative rich quotes extracted from the coded transcripts and looked across summaries to develop themes. To establish trustworthiness, code summaries were reviewed by each team member to identify and resolve any discrepancies and come to agreement on the final content. Confirmability was established by developing the coding scheme through consensus by five team members and independently applying the established codes to the transcripts before discussion. We managed data using Atlas.ti (Version 8, Berlin, Scientific Software Development).

RESULTS

The participants included 21 English-speaking and 10 Spanish-speaking HHAs (Table 1), as well as specific recommendations to promote aging in place. Nearly all participants were women (97%), with the majority ages 30–54 (48%) and 55–65 (29%). Approximately two-thirds of participants identified as Black non-Hispanic/Latino (61%), with 32% identifying as Hispanic or Latino and 6% identifying as White non-Hispanic/Latino. Most HHAs had at least one year of experience in their positions and their professional roles. Specifically, 32% of staff had 1–5 years of experience in their position, 26% had 6–10 years, 26% had 11–20 years, and 13% had more than 20 years.

Table 1.

Participant Characteristics

Characteristics	Participants N = 31 (%)*
Age range, n (%)
Under 30	3 (10)
30–54	15 (48)
55–65	9 (29)
Over 65	4 (13)
Woman, n (%)	30 (97)
Race/Ethnicity, n (%)
Black non-Hispanic/Latino	19 (61)
White Hispanic or Latino	10 (32)
White non-Hispanic/Latino	2 (6)
Years’ experience in position, n (%)
Less than 1 year	1 (3)
1–5 years	10 (32)
6–10 years	8 (26)
11–20 years	8 (26)
>20 years	4 (13)
Years’ experience in professional role, n (%)
Less than 1 year	0 (0)
1–5 years	10 (32)
6–10 years	8 (26)
11–20 years	8 (26)
>20 years	5 (16)

^*Percentages may not add to 100% due to rounding.

Overall, 17 codes were identified and then reduced to three broad themes: (1) the unique role of the HHA and how it aids aging in place, (2) concrete interventions HHAs use to aid aging in place, and (3) barriers HHAs face when attempting to promote clients’ ability to age in place. Table 2 shows this thematic breakdown.

Table 2.

Themes Related to Home Health Aides’ Perspectives on Promoting Aging in Place among Older Adults with Low Incomes

Themes	Subthemes	Activities and implications of HHA role
Theme 1: The unique role of the HHA and how it aids aging in place	1. HHAs closely observe clients’ day-to-day function.	1. HHAs gather detailed observations of client functional status and ability, allowing them to support clients’ needs more effectively. 2. HHAs’ role allows them to identify unsafe and emergency situations.
	2. HHAs adapt in their role to meet observed client needs.	1. HHAs perform tasks above and beyond their job description to support clients’ aging in place 2. To address unsafe situations or relay time-sensitive information about clients, HHAs communicate with others as needed.
Theme 2: HHAs implement concrete interventions to promote aging in place	1. HHAs support clients’ psychosocial wellbeing.	1. Personal relationships between HHAs and their client combat client isolation and loneliness. 2. HHAs recognize and support clients struggling with isolation and depression. 3. HHAs pay special care and employ unique strategies when working with clients with dementia.
	2. HHAs promote client physical activity and independent function.	1. HHAs motivate clients to stay physically active. 2. HHAs connect clients to community resources.
Theme 3: HHAs face barriers when helping clients to age in place	1. HHAs face structural barriers when helping their clients age in place.	1. Witnessing clients in unsafe or uncaring environments makes HHAs feel powerless. 2. HHAs establish professional boundaries with clients and clients’ family members.
	2. HHAs navigate structural and institutional limits of their role.	1. HHAs have limited communication with coworkers and face disrespect from other members of the care team. 2. Lack of autonomy and an inability to effect timely change to care plans complicate HHAs’ roles. 3. HHAs often managed mismatches between scheduled hours and time required to meet client care needs.
	3. HHAs contend with client and family-level challenges when providing care	1. Clients and families ask HHAs to complete tasks outside their job description. 2. Client pride, lack of insight, or cognitive impairment act as a barrier to receiving needed assistance. 3. HHAs have safety concerns regarding their work environments and clients’ safety in the home.

Theme 1: The role of the HHA is uniquely positioned to aid aging in place.

Subtheme 1: HHAs closely observe clients’ day-to-day function.

1.1. HHAs gather detailed observations of client functional status and ability, allowing them to support clients’ needs more effectively.

Through close observation of clients’ function, HHAs reported how they detected needs that were sometimes overlooked by other members of the care team who interacted with the client less frequently. Because home health nurses usually created clients’ care plans, unidentified needs could lead to inaccuracies in the clients’ listed care needs. For example, HHAs commonly identified the need for assistance with bathing and with medication reminders, even when these were not listed on the care plan. Close observation allowed HHAs to note these discrepancies as well as other signs of decline in function and ability and was a crucial tool for HHAs to support their clients effectively. Other needs HHAs identified were more complex, such as clients’ varying ability to perform ADLs and IADLs from day to day. One participant summarized the process she used to integrate her observations into the client’s existing care plan in order to meet the client’s needs:

“When you give me a care plan and I observe my patient, I do my own care plan. If you’re continent, I’m going to take you to the bathroom. If you can’t, then a commode every two hours…Even looking at how much [the client] can do for herself or how much she can’t. The care plans will say you have to cook for her, but you might not know if you have to feed her or not.” [Group 2, HHA 2]

Another participant summarized how HHAs use close observation to support clients, noting, “Show me what you can do and then I’ll fill in the blanks.” [Group 2, HHA 4]

1.2. HHAs’ role allows them to identify unsafe and emergency situations.

Participants expressed how frequent observation of a client’s environment was crucial for identifying unsafe or risky situations. HHAs were particularly concerned about cognitive decline and memory loss among residents who lived alone and lacked insight into their own abilities. One participant mentioned her concern about a client handling his own medications: “My client is blind and we can’t give out his medicine. I can’t help him. I don’t think he knows what he’s taking... Everything’s all over the place.” [Group 4, HHA 2] Many participants reflected on “chronically precarious” situations, or environments with long-standing risks to client safety such as a lack of adaptive equipment and clutter:

“One time I walked in the house…I was looking at rotten food in cans. I looked at…the flies around, the feces on her pants. And there was nowhere to walk.” [Group 1, HHA 4]

Subtheme 2: HHAs adapt in their role to meet observed client needs.

2.1. HHAs perform tasks above and beyond their job description to support clients’ aging in place.

HHAs described supporting client’s ability to age in place and adapting to clients’ needs through tasks included in their formal job description as well as informal tasks outside their job description. Participants took pride in performing extra tasks that went above and beyond their job description to care for clients effectively. HHAs also discussed a sense of duty to help clients with these tasks, despite potential liability arising from performing tasks beyond the care plan. As one HHA noted, “I think a lot of the time you do some [tasks] they don’t have in the care plan. It won’t be what’s going to hurt them.” [Group 3, HHA 5] Examples of tasks included purchasing goods or food that clients were unable to obtain independently, sharing private cell phone numbers with clients, and staying additional hours “off the clock” to provide companionship. As one HHA reflected, to provide needed care for her client, “I push the envelope...So I can keep working, I don’t push it off the table.” [Group 1, HHA 5]

2.2. To address unsafe situations or relay time-sensitive information about clients, HHAs communicate with others as needed.

HHAs reported that they communicated concerns about clients to other individuals including HHAs, nurses, supervisors, family members, and emergency services. To relay time-sensitive information such as a change from a client’s baseline or an unsafe situation, HHAs relayed information up their chain of command for supervisors or nurses to act on. Often this was done electronically, using an application on the HHA’s telephone:

“Whatever we need is right there [in the application]. If they’re not eating right, you just could put, ‘Loss of appetite.’ It goes straight to the nurse. Once we hit that button, they get it. They see it.” [Group 4, HHA 4]

This communication allowed supervisors to incorporate changes into the care plan or provide guidance in emergency situations, such as calling 911 in response to acute decline or Adult Protective Services for suspected abuse. An HHA observed that she “weighs it out, prays it out” [Group 1, HHA 4] to discern true emergencies and not raise alarm bells unnecessarily which could jeopardize clients’ aging in place.

Theme 2: HHAs implement concrete interventions to promote aging in place.

Subtheme 1: HHAs support clients’ psychosocial wellbeing.

1.1. Personal relationships between HHAs and their client combat client isolation and loneliness.

HHAs across all focus groups reported close relationships with their clients. Caring attributes— particularly compassion, empathy, and respect— were discussed as essential components of and even a prerequisite for the job. Participants emphasized the need to “learn how to treat [the client],” [Group 5, HHA 1] paying attention to each individual’s preferences for forming a close bond. HHAs described how these relationships often acted as protective factors against client isolation or neglect. One HHA referenced her role as a stand-in family member for a client whose family was absent:

“It’s difficult being in my shoes as a caregiver. Because I can help you to an extent, but I can’t make your mom come here. And I can’t make people come visit who don’t return your phone calls. But you can call me.” [Group 1, HHA 7]

1.2. HHAs recognize and support clients struggling with isolation and depression.

HHAs described witnessing client isolation and depression that interfered with clients’ ability to perform ADLs, to exercise, and to maintain overall wellbeing. Isolation and neglect from family members were cited as factors in client’s mental health decline, and many HHAs expressed frustration at their powerlessness to intervene. HHAs responded to clients’ struggles with empathy and by drawing on previously built rapport. One HHA outlined how she drew upon knowledge of the client to lift her spirits:

“I said, ‘Hello, how are you?’ [and the client said,] ‘Not very good, waiting to die, because that is the only thing that can save me.’ They had a dog and I told them, ‘No, that dog, you’re everything for that dog. Look, I saw the opportunity to get know you and I have learned about you and you have helped me,’ to cheer them up.” [Group 5, HHA 1]

HHAs highlighted the importance of distinguishing between clients’ active and passive suicidality, since identifying active suicidal ideation triggered an urgent protocol: “I’ve had to strategically get my phone, try to say I’m going to go check the mail or something immediately, get on the phone with the supervisor immediately, the nurse immediately calls back.” [Group 2, HHA 4]

1.3. HHAs pay special care and employ unique strategies when working with clients with dementia.

Providing optimal care to clients with dementia was a challenge for HHAs. As one HHA noted, “One day they can be in a great mood, and the next day their mood is on the floor. After working so hard the day before to raise them up, we have to do it all again from nothing.” [Group 6, HHA 1] Many HHAs described facing verbal abuse from particularly confused clients and needing to “not take [it] to heart” [Group 5, HHA 4] in order to continue to provide care and rebuild rapport. HHAs across all groups also mentioned the importance of using special strategies to manage behavioral symptoms associated with dementia, like modulating tone of voice or creating and maintaining individualized routines. A participant shared the personalized strategy she used to care for a challenging client, relying on her knowledge about the client’s cultural background and personal history to encourage her to exercise:

“She had to use a walker and she did not want to go about with it; she was scared. I would tell her, ‘Get up, come on, you can do it,’ and she would leave the walker and dance bachata and all sorts of things. I would say, ‘You’re Dominican, come dance with me,’ and she would move and laugh with me. ‘As soon as you feel better, we can find you another husband.’ And that would motivate her to move – I would have her exercise and give her weights, and sometimes I would forget that she had dementia because she would start acting normally again.” [Group 6, HHA 1]

Subtheme 2: HHAs promote client physical activity and independent function.

2.1. HHAs motivate clients to stay physically active.

Across all focus groups, HHAs reported that they aimed to keep clients active to maintain function and prevent functional decline. As one HHA stated, “[Clients] need to be able to be mobile. Once they sit down, they’re going to be stiffing. If you don’t keep moving, you’re going to be stuck. Once you stop, you’re not going to get that back.” [Group 3, HHA 5] Some HHAs relayed past experiences with clients who had rapidly lost mobility and function due to physical inactivity and remarked on the importance of performing any prescribed exercises during their shifts, as they were often “the only ones to carry out the care plan” with their client. [Group 3, HHA 3]

Many HHAs mentioned struggling to motivate clients to exercise and employed creative motivational techniques, such as engaging clients in conversation when taking walks outdoors. Several participants set smaller, more manageable goals when proposing activities for clients: “We don’t have to walk a long way. We can just go a little bit. You tell me how far you want to go.” [Group 2, HHA 2]

2.2. HHAs connect clients to community resources.

HHAs identified gaps in client care that they could not address directly, particularly regarding food insecurity and isolation. In these instances, HHAs helped to connect clients to community resources including church food banks, free clinics, or social activities in their building. “They may say, ‘Can you go to the market and grab me something?’ I’ll be like, ‘I’ll do that for you. What do you need?’ Especially if they need food, and you know they’re alone, they need it, and you’re their only chance of food.” [Group 4, HHA 2] HHAs sometimes went above and beyond to coordinate among themselves to ensure clients had needed services. For example, even though a client’s care plan only included “feeding” as a to-do item, this required HHAs to coordinate obtaining food. As one HHA noted, “So you need to just check on his church, on the church in the neighborhood, too. Because he has a morning aide, I left her a note to let her know when he gets low on food to call the church and find out, because they give [food] out like once a month.” [Group 1, HHA 3]

Theme 3: HHAs face barriers when helping clients to age in place.

Subtheme 1: HHAs face structural barriers when helping their clients age in place.

1.1. Witnessing clients in unsafe or uncaring environments makes HHAs feel powerless.

Many HHAs reported feeling powerless when they saw clients unsupported at home and could not intervene, for example when clients’ family members were dismissive or uncaring. As one HHA reported, “Because you are outside of the family, if you complain and the [family member] in charge is the person disrespecting the patient, you feel powerless.” [Group 5, HHA 1] Some HHAs tried to intervene when they could, by reporting (or threatening to report) the behavior up their chain of command: “I just say, ‘This is from my supervisor.’ That means ‘don’t play with me.’” [Group 1, HHA 4] In other cases, HHAs felt speaking up would do more harm than good, especially if they were directly employed by the family member whom they disagreed with.

1.2. HHAs establish professional boundaries with clients and clients’ family members.

Multiple participants discussed the dilemmas they faced when clients requested services that they weren’t allowed to perform or when family members made excessive demands beyond the scope of the HHA role. Even when agency guidelines provided clear boundaries, communicating those boundaries without upsetting clients or making them defensive could be difficult, further complicating HHAs’ jobs: “If you tell the client, ‘I can’t,’ immediately, there’s a wall put up, and you don’t want any walls.” [Group 2, HHA 4] In establishing boundaries, each HHA had a slightly different approach or limit to what they would accept. One HHA mentioned ending her work with a client whose family expected her to clean, cook, and organize the family’s whole house, instead of just her client’s space: “I was basically taking care of [her] family, so I just had to cut it off.” [Group 2, HHA 2]

Subtheme 2: HHAs navigate structural and institutional limits of their role.

2.1. HHAs have limited communication with coworkers and face disrespect from other members of the care team.

Due in part to the lack of overlap between shifts, HHAs did not often interact with each other even when providing services for the same client, and expressed a desire for more frequent communication with coworkers:

“We have very little interaction with other home health aides. Our best assets, our best allies are our coworkers, but we never really get opportunities [to interact with them]… This is my only job in my life that I don’t really interact with my coworkers.” [Group 2, HHA 2]

To ensure that important information was passed along, such as how to follow an apartment’s trash guidelines to avoid eviction, some HHAs relied on informal written notes. Others reported that co-workers took advantage of the lack of formal sign-out and actively avoided communication to avoid being held accountable for leaving tasks unfinished at the end of a shift.

While HHAs valued their own work, they also reported feeling undervalued as members of the home health care team, discussing a lack of recognition and perceived condescension from nurses and physicians. As one HHA noted, “We know they have nurse excellence. They have all things for nurses. You never see nothing about the aides.” [Group 2; HHA 2]

2.2. Lack of autonomy and an inability to effect timely change to care plans complicate HHAs’ roles.

Participants differed widely on their reported usage of care plans. Some HHAs relied on care plans posted within the home that were updated frequently, while other participants remarked that they often did not have care plans in client homes, even though they knew they were “supposed to.” HHAs discussed the challenges of enacting the care plan yet being unable to edit it, even when the care plan was outdated. Some HHAs spoke about the risk of liability stemming from performing services outside the care plan but would often still perform care outside the delineated care plan when needed.

2.3. HHAs often manage mismatches between scheduled hours and time required to meet client care needs.

HHAs frequently mentioned feeling overwhelmed by the number of tasks they were assigned for clients, especially when tasks were more time-intensive and complex, or clients needed more assistance than outlined by the care plan. Conversely, some HHAs mentioned that other clients had too many hours scheduled, contributing to the imbalance for clients who needed more hours and reinforcing the need to better match scheduled hours to clients’ needs. When reflecting on the amount of work she performed for a client, one HHA was dismayed to think about the future of her field: “I don’t know what everybody’s going to do. We’ve got this burgeoning supply of people who need a lot, a lot, a lot, a lot of care.” [Group 1, HHA 1]

Subtheme 3: HHAs contend with client and family-level challenges when providing care

3.1. Clients and families ask HHAs to complete tasks outside their job description.

A common point of contention between HHAs and families was the physical boundaries of a client’s space. When cleaning or cooking, some HHAs felt pressured to do so for the client’s entire family. Some participants would perform the extra tasks to avoid confrontation, or because they saw these extra tasks as allowing their client to lead more comfortable home lives. In other cases, HHAs complied simply due to a lack of resources to confront the issue. One HHA relayed how a client’s family members would avoid performing their share of the care for the client—even though they were also paid as caregivers—and leave her with extra work.

3.2. Client pride, lack of insight, or cognitive impairment act as a barrier to receiving needed assistance.

HHAs noted the challenges of managing client resistance to receiving care, which could stem from pride, cognitive impairment, or lack of insight:

“I was just on a case where my client kept saying to me, ‘I am very independent. I know how to do this and I know how to do that.’ He would get around, but he’d be shaking more than the leaves on the tree and I’d be like, ‘What are you talking about?’” [Group 2, HHA 1]

To address resistance to care and maximize clients’ sense of autonomy, HHAs spoke about the importance of respecting and fostering their clients’ independence to allow clients to “liv[e] the life that they want to live,” and “to make them feel comfortable and let them know whatever they decide to do, that’s their decision.” [Group 2, HHA 3] HHAs helped clients to maximize their independence and autonomy while maintaining safety and improving functional status. One of the most frequently used techniques was distraction: chatting with clients with the goal of providing care, without drawing too much attention to the process. Other HHAs mentioned paying close attention to clients’ functional status and only supplementing when absolutely necessary or when safety issues arose. A majority of HHAs reported modulating their approach to fit each client’s preference and allow the client to take the lead in their care.

3.3. HHAs have safety concerns regarding their work environments and clients’ safety in the home.

HHAs discussed several safety issues that they encountered in clients’ homes. These included behavioral concerns, such as hoarding and memory loss resulting in the inability to perform ADLs, as well as unsafe physical environments, such as missing adaptive equipment and uneven flooring. HHAs also discussed concern over their own safety at work; one HHA regularly carried “$300 worth of groceries up four flights of stairs,” [Group 1, HHA 4] while another faced threatening family members at her client’s home. Despite efforts to communicate safety concerns to supervisors in a timely manner, some participants described feeling as though communicating with their supervisors was ineffective in preventing emergencies, noting that “you report it and then nothing is done until the final moment.” [Group 3, HHA 5]

Recommendations from HHAs

Many participants were passionate about enabling clients to remain in their own homes for as long as possible and shared recommendations on how to improve aging in place based on their work experience. HHAs cited client familiarity with their surroundings and lower costs of living as two important benefits for aging in place in one’s home instead of having to move to an assisted living facility. HHAs also recommended increased HHA hours with clients as an alternative to assisted living.

Many HHAs also recommended increased social supports for their clients, whom they frequently saw struggle with isolation and mental health. HHAs relayed positive experiences their clients had while attending adult day centers but cited prohibitive costs as a barrier for clients and families. HHAs pointed to activities within some clients’ buildings— bingo, fitness classes— that helped clients stay connected to their communities and neighbors as more accessible options.

HHAs also recommended increased care coordination among care teams to better align the total hours of care received with clients’ needs. Assistance with medication administration and ADLs and IADLs were two common unmet needs outlined by HHAs. To help address these needs, HHAs recommended closer monitoring of the care plan and hours assigned to clients, as well as more frequent check-ins by home health nurses.

HHAs also frequently discussed the need for clients to have more accessible living spaces. To improve accessibility, HHAs recommended home modifications such as shower bars or walk-in showers and adaptive equipment such as wheelchairs and walkers. They also discussed accessibility issues related to the physical environment in the home and neighborhood, such as cramped living spaces and uneven sidewalks.

One focus group discussed how to lobby for improved HHA work conditions and hours. Recommendations included improving reimbursement rates, advocating for better pay for HHAs from agencies, and allowing legislators to see all the work that goes into home care.

DISCUSSION

In this qualitative study, we found that HHAs navigate a wide variety of responsibilities, relationships, and barriers to provide care for older adults in their homes and promote independence and aging in place. HHAs described how they provide interventions that positively impact clients’ safety and stability at home, including companionship, connection to community services, and motivation to remain physically active. As a result of their position working in close proximity with clients and families, HHAs have insights into factors that affect older adults’ ability to age in place, such as increasing care needs, signs of progressive cognitive impairment, and mental health decline. Our findings suggest that HHAs are an underutilized resource who could provide valuable insights to inform interdisciplinary care planning to promote aging in place for older adults with low incomes.

Our findings highlight several challenges in the HHA role, including its ambiguity and need for frequent adaptation. From boundary setting with families to navigating their role as non-clinical team members who work in close proximity with clinical team members, HHAs are constantly adapting. Participants described acting on observations when interfacing between clients and the medical system in a process akin to clinical reasoning. For example, HHAs described their approach to escalating emergencies to home care nurses, recognizing depressive symptoms, and assisting clients with medical equipment. This ambiguity between clinical and non-clinical work is reflected in studies on the perspectives of clients and family members that report that clients value HHA assistance with clinical activities such as attending medical appointments, monitoring clients for concerning clinical symptoms, and providing medication reminders.^13,26 Our analysis revealed variable HHA perspectives on the potential harms and benefits of completing tasks that fall outside the HHA job description. This is reflected in another study that found that boundary pushing and ambiguity act as double-edged swords, increasing reports of physical and/or emotional injury among HHAs while also leading to greater job satisfaction and purpose derived from performing meaningful interventions.²⁷

HHAs frequently reported that delivering interventions to maintain or improve client physical and psychosocial wellbeing were both valuable to their clients and the most rewarding part of their work. Older adults, especially those living alone, with chronic illness, and in subsidized housing, are at increased risk of isolation and loneliness.^28,29 Depression has also been associated with limitations in the ability to complete ADLs among community-dwelling adults with low incomes.³⁰ Our qualitative analysis demonstrates that HHAs observe these associations in their day-to-day work and focus on developing meaningful relationships with clients to address loneliness and depression, going above and beyond their job description to do so. We found that HHAs also take steps to help better connect clients to community resources. The value of this work is supported by literature on the objective benefits of psychosocial interventions among older adults. For example, a meta-analysis of social relationships and mortality demonstrated a nearly 50% increased likelihood of survival among people with strong social relationships and even greater benefit from those with higher degrees of social integration.³¹

We also found that HHAs struggled with a lack of agency when faced with client needs that they cannot meet due to structural, institutional, and situational barriers. These barriers include an inability to adequately intervene when witnessing clients living in unsafe environments, an inability to provide needed care for clients who have insufficient home care hours or insurance coverage, and a lack of recourse when disrespected by clients’ families or other health care professionals. To address these limitations, participants recommended more frequent needs assessments, more robust interdisciplinary care coordination, increased home care hours, better accessibility of client homes with home modifications, and increased access to community programs. These recommendations add to the existing literature recommending expansion of home care services and greater integration of HHAs into home health teams.¹³ These findings also build upon qualitative research that highlights the difficulty HHAs have setting boundaries with client families and a need for improved respect and occupational safety.^27,32

Our findings also support calls for increased integration of HHAs into healthcare teams to augment older adults’ ability to age in place, as HHA observations represent a valuable, likely underutilized resource. Potential steps for greater integration include direct closed-loop communication pathways and interdisciplinary huddles that allow all members of a care team to share their observations and make relevant updates to client care plans. Interdisciplinary models of care, such as the Program of All-Inclusive Care for the Elderly (PACE) program, offer one example of HHA integration.³³ Communication may also be enhanced by formal avenues for HHA documentation in client care plans and shift sign-out that would allow HHAs working in the same home to communicate more directly with each other. Since the focus groups for this study were completed, the COVID-19 pandemic has further highlighted the ways in which HHAs act as a safety net for residents with limited access to necessities such as adequate food and a support for residents experiencing severe isolation and depression – and the strain this poses for HHAs.^26,34 To this end, our study highlights a need for additional resources to support HHAs who are intervening on unmet needs among community-dwelling older adults that the U.S. healthcare system is struggling to support. Existing initiatives to support HHAs include “upskilling” the HHA workforce through continuing education and expanded scope of practice,³⁵ promoting retention through improved workplace conditions,³⁶ and creating pathways for personal and professional growth for HHAs.³⁷

This study has several limitations. Nearly all of the HHAs in the study were women (97%), higher than the national home health worker average of 90% in 2020.³⁸ The majority of participants were Black (61%), also higher than the national average of 37%, consistent with the demographic characteristics of the greater Philadelphia area.³⁸ We recruited HHAs from two sites of a large non-profit home care agency, one site serving clients living in urban areas and one urban and suburban areas. The experiences of HHAs in this study may not reflect those of HHAs working in other geographic locations, more rural settings, or at for-profit agencies. However, our findings are generally consistent with prior literature examining experiences of HHAs and challenges of the HHA role. While the study included both English- and Spanish-speaking HHAs, it focused on HHAs’ general perspectives on promoting aging in place among older clients and did not include specific questions about how language or cultural identify may have influenced their role. A strength of the study is the interdisciplinary research team which brings a broad perspective to understanding the care needs and impact of the HHA role and the inclusion of both English- and Spanish-speaking HHAs.

In this qualitative study, HHAs discussed their roles in promoting independence and aging in place for older clients. Because HHAs work so closely with clients and families, they have unique insight into factors that affect older adults’ ability to age in place coupled with the ability to deliver interventions to encourage older adults to engage in physical and functional activity. Taken together, our findings suggest that HHAs should be better integrated into care teams and also more involved in delivering interventions to help older adults live independently and safely in their homes and communities.

Data availability statement

The data supporting the results will be made available by the authors upon reasonable request.