Home-Care-Aides Voices from the Field: Job Experiences of Personal Support Specialists—the Maine Home Care Worker Retention Study

Abstract

In response to a rapidly aging population that is living longer with more chronic health needs, increased recruitment and successful retention of home care aides is essential. Insight into the job experiences of Personal Support Specialists is provided through the qualitative findings from a mixed-method mail survey (n=131). Workers described reasons why they do their jobs (feeling rewarded, valuing helping and being energized by homecare work) as well as the challenges they face providing homecare (low wages; along with a lack of benefits, respect and recognition). Both short and longer term recommendations are formulated based on workers’ narrative responses.

Introduction

The paraprofessional workers in home healthcare are essential for good patient care (Stone & Dawson, 2008). These direct care workers have been described as the centerpiece of our long-term care system (Stone & Weiner, 2001), providing the daily care and comfort to consumers of home care services; home care workers are often the eyes and ears of day-to-day changes in health and living situations of their clients. With a rapidly aging population, the demand for home care aides is projected to increase by over 50% in the next decade (National Advisory Committee, 2009). These aides, frequently called home care aides (HCAs) or personal care attendants (PCAs) and whose work is coordinated and overseen by nurses, provide assistance with personal care, activities of daily living, transportation, and light housework. Recruiting and retaining reliable HCAs/PCAs has been an ongoing challenge for home healthcare agencies throughout the country, a challenge which will only increase as the demand for the services performed by these workers continues to climb. The short supply of direct care workers has been labeled by some as a public-health crisis, because the ultimate victims of this care gap are the elder consumers of services (Wilner & Wyatt, 1999).

The Problem of Turnover among PCAs

There are many reasons why recruiting and retaining an adequate number of PCAs in home care has been difficult (Benjamin & Matthias, 2004). Wages are very low, benefits are poor or nonexistent, and hours are often inconsistent (Kemper et al., 2008; Morris, 2009). Compared to other low-wage work, the physical and emotional stress can be very high (Leon, Marainen & Marcotte, 2001), and there are few opportunities for advancement.

On the other hand, there are many aspects of HCA/PCA work in home care which appeal to the individuals who take these jobs. Research has indicated that home care workers are dedicated to helping people, appreciate the job variety and flexibility, and feel a sense of mission about their work (Eustis, Kane & Fischer, 1993; Feldman, 1997).

Turnover is costly on many levels. When a worker leaves an organization, there are costs related to recruitment and training of new workers. Moreover, there is the possibility of a reduction in quality of care or of no care at all. Remaining workers may be at higher risk of injury due to increased physical and emotional stress and deteriorating work conditions may lead to further turnover (Seavey, 2004). National data on turnover rates of direct care workers vary, but have been estimated to range from 40% to 100% annually (Stone & Dawson, 2008).

Context of Study

The shortage of direct care workers in Maine has been of concern for many years. As early as 1986, the Maine Department of Human Services reported a 64% turnover rate of certified nursing assistants (CNAs) in nursing homes (Maine Health Care Association, 1999). Thirteen years later, the Maine Departments of Labor and Human Services collaborated with the Maine Health Care Association to examine the situation more closely. At that time, a 50% turnover rate was estimated for PCAs and CNAs across health care settings, including home care agencies; this meant that for every ten aide jobs, there were five departures and new hires each year (Maine Health Care Association, 1999). Three years later a coalition was initiated—the Direct Care Worker Coalition (DCWC)—comprised of representatives from the long-term care and support system in Maine including workers, consumers, service providers and allies. The coalition’s mission was to promote policy and practices that respect and value direct care workers in order to sustain quality direct care in Maine. Since its inception in 2002, the coalition has initiated several legislative bills to improve conditions for direct care workers in the state and has successfully raised the visibility of the problem of recruitment and retention of this workforce both in the legislature and in the broader population (Gedat, 2009).

Although the study reported on here—the Home Care Worker Retention Study (HCWRS)—was not carried out under the auspices of the DCWC, the impetus arose from the issues raised by coalition members. Funded by the National Institute on Aging, the HCWRS seeks to understand the factors related to turnover and retention among home care workers in Maine. This is a longitudinal study of Personal Support Specialists (PSSs)—the current title of HCAs/PCAs in Maine—working for agencies providing non-Medicare-related support services. (One of the eleven agencies participating in the study also provided Medicare-funded services, although HCA/PSS workers were not involved in these services.) The state certification for HCA/PSS workers in Maine involves 50 hours of training. The services provided by these HCAs/PSSs are paid for by Medicaid, through Home and Community-Based Services waiver programs; other state-funded programs for elder services; and private-paying consumers.

Method

Data Collection

The HCWRS was approved by the Institutional Review Board (IRB) of the University of Maine in spring 2008. Eleven agencies representing all 16 Maine counties agreed to participate in this study. In October of 2008 the participating agencies were sent a 12-page questionnaire, consent form, and postage-paid return enveloped addressed to the research team to all of their HCA/PSS workers (n=496). Although the HCWRS is a longitudinal study examining retention over 18 months time, this article reports on the findings from the first survey, completed by 261 HCA/PSS workers (a response rate of 52.6%) in fall 2008.

Survey Instrument

The questionnaire, developed by the second author, was composed of demographic questions and several standardized scales, with established reliability and validity, measuring job experiences such as burnout, empowerment, and job satisfaction, as well as the health of the respondents. In addition to the short answer questions, at the end of the survey, in an open-ended question, the study participants were invited to write in their own words about their work experience; 131 (50.2%) of the participants included written comments. These rich narratives are the focus of this article. Findings from the standardized scales are outside the scope of this article, but readers are encouraged to contact the second author if interested in knowing more about the study findings or the complete survey instrument.

Analysis

The narrative data were analyzed for recurring themes using the constant comparative method of grounded theory (Strauss & Corbin, 1998). To increase reliability, the first two authors reviewed these data individually and came together to discuss potential themes with a third reader, a research assistant on the project. Further review of these narrative data was undertaken by the first author and these data were assigned placement in different thematic areas and reviewed with the second author. Two overarching themes emerged: 1) why HCAs/PSSs work in the field of homecare, and 2) the challenges they face in doing their work. Subthemes related to each overarching theme were arrived at through additional data analysis (i.e., reading and rereading narratives to identify ideas that were either distinct or consistent from each other statement). Distinguishing subthemes involved identifying repeated words and phrases that were the same or purported the same message; further determining if any of the subcategories overlapped; and ultimately, arriving at distinct categories that would best encompass gathered data.

Findings

Sample and Job Description

The 131 study participants who added narrative data to the HCWRS surveys encompassed a diverse group. Six men and 125 women ranging in age from 21 to 82 (mean = 47.5) provided narrative survey input. Some participants reported previous work experience in health care (n=20; 15.3%) while others (n=2; 1.5%) reported being new to the field; eighteen workers (13.7%) specifically reported homecare as a second job. The study participants engaged in a variety of tasks to support their clients’ ability to stay at home describing their work context with statements such as “no day is exactly the same” and “I am a counselor, a caretaker and a housekeeper and sometimes a shoulder to cry on.” Some participants pointed out that their work varied significantly between clients, and determined the level of stress they experienced. The two primary themes emerging from the study participants’ narratives describe both what they love about their work and what they find challenging.

Why We Do this Job

There was an overwhelming expression of love for the job by participants with 41.2% (n=54) expressing how much they enjoyed their jobs and working with elders; many explicitly stated “I love my job”. Specific feelings expressed by participants related to why they chose to work in the field of homecare and are described in the following three subthemes: 1) feeling rewarded by engaging in homecare work (n=15; 11.5%), 2) the value of helping (n=9; 6.9%), and 3) the job “keeps me going” (n=7; 5.3%).

Feeling rewarded

Study participants wrote about the intrinsic benefit they received by engaging in homecare often identifying their job as rewarding to them, using terms such as “satisfaction,” “gratification,” or “pleasure” to describe their work. Study participants who had worked both in nursing care facilities and in homecare, generally preferred in-home care. As stated by one participant “I have worked with the elderly population off and on for 27 years and have found the home care environment the most rewarding.” Providing support that allows people to stay at home was described as satisfying by many participants, as illustrated by the following quote, “Doing homecare within the patient’s ‘comfort zone’ is so much more relaxing and rewarding [than caring for someone in nursing home].” Others expressed the importance of relationships developed with clients noting the value of one-to-one time spent with clients in homecare.

Value of helping

Many HCAs/PSSs responding to the survey shared that they valued being able to help others and that they were able to do this through their work in homecare. The desire to care for elders and veterans was explicitly expressed by some study participants. Some participants wondered what their clients would do without the assistance of a HCA/PSS. Would it mean having to live in a facility or would clients just have to get by without the assistance provided by the HCA/PSS, such as being helped out of bed, being bathed, or having a meal prepared. One HCA/PSS stated “I go to work every day because I know that my clients need me for who else would help them if they live alone and are waiting for me” while another asserted “I love my job very much because sometimes I am the only person my clients see every day. They count on me being there every day.”

Keeps me going

Another reason HCAs/PSSs work in the homecare setting is because their work adds meaning to their life. One participant shared,

If my personal life is rocky or I don’t feel like the sun is shining on me—my work reminds me daily to be thankful for all the time of my life...Sometimes my work is the “power” I need to recharge my batteries.

Another participant relayed “My greatest satisfaction comes from my involvement with my consumers which makes my work very enjoyable and keeps me going.”

Challenges for PSSs in Homecare

Despite the rewards of the work, many challenges exist for HCAs/PSSs working in homecare that impact the ability of HCAs/PSSs to remain in or to consider employment in this field. Challenges study participants noted in the narratives included low wages (n=31; 23.7%), unreimbursed mileage (n=22; 16.8%), erratic, unpredictable schedules and job insecurity (n=11; 8.4%), which we have included under the first subtheme, “can’t make ends meet”; lack of benefits, including paid time off (n=16; 12.2%), health insurance benefits (n=6; 4.6%), and ongoing training (n=3; 2.3%) falling under the subtheme “no benefits; and lack of respect for their position as a PSS in homecare (n=10; 7.6%), our third subtheme.

Can’t make ends meet

Survey participants made an average of $9.05 per hour (range $7.50–$13.50/hour) with average unreimbursed mileage of 45 miles/week (range 0 – 438 miles/week). This can be unsustainable as illustrated by one participant who wrote “I had to give up my other clients because the price of gas and low wages I wasn’t making ends meet.” Further impacting HCA/PSS income were the often inconsistent, short shifts, requiring frequent un-reimbursed travel between client homes. The resulting job insecurity was described by one participant: “I am not fully able to rely on any kind of consistency as far as work schedule is concerned. It has been extremely erratic; this is a big concern for me being a single mother trying to maintain a household.”

No benefits

In addition to low realized financial compensation, most participants did not have health insurance through their homecare employer. Over 50% of participants had either no health insurance (n=42; 32.1%) or qualified for Medicaid due to their low income (n=26; 19.8%). Furthermore, HCAs/PSSs reported frustration about not having benefits such as paid time for vacations, holidays, personal needs or if sick. Thus, workers did not have time away from the job to “de-stress”. One participant wrote,

There is no vacation time, no sick time, no holiday off....No de-stressing, no one to cover. Imagine working 20–40 hours a week 52 weeks a year and no vacation. If you do take one you lose your entire check. Same goes for sick pay – no paycheck.

Lack of respect and recognition

Study participants expressed frustration with their homecare agencies when they didn’t feel appreciated, when their calls to supervisors were not answered in a timely fashion and when they attributed the inconsistent hours and lack of benefits to poor company management. One study participant stated that “My greatest frustration comes from my involvement with the agency, especially my supervisor. [My supervisor] seldom returns calls in a timely manner if at all.” Other study participants commented on the low status given to homecare workers by society. One participant stated “There is an unspoken prejudice that we do not have the brains to learn anything new.” We turn now to the implications of these findings for home healthcare and the direct care workforce.

Implications

The findings from this study provide further evidence for many current state and national initiatives to recognize the value of direct support workers in home care and the long-term care (LTC) system in general and to improve their job conditions. Clearly there is much that PSSs love about their homecare work and these aspects of their jobs need to be supported and allowed to flourish. As one participant stated, “We don’t choose this career because we want to get rich; we choose it because we love to help those in need.” But even such commitment may not be able to withstand the challenges that cause personal support workers to leave their jobs. Addressing these challenges may be less daunting if broken down into short-term and long-term recommendations for change.

Short-Term Recommendations

Recognize and honor direct care workers

The importance of appreciation and the understanding of the vital job functions in which homecare workers engage cannot remain overlooked if increased recruitment and worker retention is to occur. Despite the identified subtheme of lack of respect, there were also numerous study participants (n=28; 21.4%) who identified what they liked about their agencies and how much the existence of friendly staff and supportive supervisors meant to their job satisfaction. Having supervisors respond quickly to their calls and listen to their input was validating to workers. Being told they had done a good job went a long way toward agency loyalty. One very satisfied worker wrote, “I receive enormous support, respect and gratitude for my efforts.” Even at the national level, there is a movement to provide more recognition to paraprofessionals in LTC. A resolution, sponsored by 10 senators including Senators Collins and Snowe of Maine, was introduced in the Senate on July 29, 2009 to designate September 14, 2009 as “National Direct Support Professionals Recognition Week” (S. Res. 228, 2009).

Provide respite and days off

While paid vacation and paid sick leave are ultimately the benefits that should be provided to all workers, an interim step that would be less financially burdensome for small agencies would be to build in coverage so that workers knew they could take time off, assured that their clients would still receive the care that they needed. Letting workers know that they can take time for vacations or emergencies will reduce stress and burn out.

Long-Term Recommendations

The more financially difficult recommendations are also crucial and fortunately are receiving attention in state houses across the country and even in Congress as national health care reform is being debated. For most of the agencies in this study, raising wages, reimbursing mileage, and providing paid sick days and vacation for workers would require higher levels of Medicaid reimbursement for home and community based services. Being too numerous to describe here, the reader is directed to a paper by Elise Scala (2008) which provides a detailed review of public and private initiatives to improve direct care service workers recruitment and retention including increased wages, more stable hours, and providing benefits. Additionally, the website of the Paraprofessional Healthcare Institute (PHI), a national advocacy organization that supports state and national-level improvements in work conditions for paraprofessionals, is invaluable for keeping abreast of the latest policy developments and workplace initiatives.

In Maine, a workgroup convened by the Maine Department of Health and Human Services (DHHS) is currently meeting to respond to four legislative initiatives involving LTC including raising wages and providing health care to direct service workers (personal communication, Diane Scully, Director of the Office of Elder Services, Maine DHHS, August 27, 2009). State efforts, such as those in Maine, along with the current attention to workforce issues in national discussions of healthcare reform may indicate that we have arrived at a window of opportunity for change. Ongoing advocacy and education of the public and policy makers will be necessary in order to assure that direct support workers in home health care are paid livable wages and have access to health care benefits. Without those improvements, recruitment and retention problems will remain insurmountable.

The narratives offered by the HCA/PSS workers in the HCWRS provide a portrait of a very dedicated workforce which is committed to providing good care. Future reports from the HCWRS, benefiting from its longitudinal nature, will be able to compare the work experiences of Personal Support Specialists who stay at their agencies with those who terminate over an 18 month period.

Although a voluntary survey from one state—which is more rural and less racially diverse than most regions of the country—cannot be considered representative of all personal support workers in home care in the United States, it does provide an in-depth, insiders’ view of personal support work. Too often such input is not sought in policy reform, resulting in an incomplete picture of the phenomenon being addressed. This study allowed for these workers voices to be heard in this very timely policy debate.