Perceptions and practice behaviors regarding late-life depression among private duty home care workers: a mixed-methods study

Xiaoling Xianga , Jianjia Chenga, Ashley Zuverinka and Xiafei Wangb

aSchool of Social Work, University of Michigan, Ann Arbor, MI, USA; bSchool of Social Work, Syracuse University, NY, USA

ABSTRACT Background: This study aimed to examine personal care aides (PCAs)’ knowledge, beliefs, and atti- tudes towards late-life depression and their experience caring for older adults with depression. Method: This study used a mixed-methods convergent parallel design involving an online survey (n¼ 87) and semi-structured interviews (n¼ 22). Survey respondents were recruited using conveni- ence sampling and interviewees using purposive sampling from private duty home care agencies in Michigan. Qualitative data analyzed using a technique involving data reduction and open cod- ing. Survey data were analyzed using descriptive statistics. Results: Most PCAs underestimated suicide rate among older adults, overrated self-help ability of the depressed person, underrated difficulty diagnosing depression, and attributed depression to personality flaws. PCAs favored psychotherapy and informal support and generally regarded medi- cation as unhelpful, particularly in mild/moderate depression. Despite these discordances, PCAs’ self-reported practice behaviors included strategies (i.e., communication, behavioral, cognitive, emotional regulation, relational, and external) that were largely consistent with the scientific view, particularly relating to behavioral activation. A prominent theme from PCAs’ narratives was individ- ualized care, reflected in their assessment of depressive symptoms, attitude towards depression treatment, and strategies caring for clients. Conclusions: Several areas of PCAs’ perceptions regarding late-life depression were discordant with the current scientific view, although their practice behaviors were largely consistent with the principles of evidence-based practice for depression. Specialized mental health training, a standard depression care protocol, and higher training standards are essential to mobilize the large number of PCAs to improve the mental health outcomes of hard-to-reach older adults.

ARTICLE HISTORY Received 31 January 2019 Accepted 17 June 2019

KEYWORDS Home care; direct care workers; depression; older adults

Introduction

Private duty home care is a fast-growing segment of the home care industry, and typically involves “unskilled care” (e.g., personal assistance and companionship) provided part-time, intermittently, or even around the clock. In this regard, private duty home care differs from home health services covered by Medicare, the latter of which provides intermittent skilled nursing care and rehabilitation services after an acute illness. In most cases, private duty home care is an out-of-pocket expense, although Medicaid and some private insurance plans may pay for unskilled home care. Most private duty home care agencies are for-profit and not subject to Medicare certification. Training require- ments for private duty home care workers are determined by the states with no national guidelines. Training stand- ards vary considerably among private duty PCAs across states, with no formal requirements imposed by some states (Kelly, Morgan, & Jason, 2013).

Home care workers, including personal care aides (PCAs), home health aides, and nursing assistants, are among the fastest growing jobs in the United States. PCAs often provide personal assistance, companionship, light housekeeping, and transportation whereas home health aides and nursing assistants may perform some clinical tasks under the supervision of a licensed health care

professional. Nearly 3 million home care workers provide care for millions of older adults and persons with disabil- ities in the home- and community-based settings (PHI, 2017; Bureau of Labor Statistics, United States Department of Labor, 2018). The number of home care workers needed is projected to increase by 41% in the next decade (Bureau of Labor Statistics, United States Department of Labor, 2018) due to rapid population aging, longer years lived with disability, and a growing emphasis on aging in place.

Research has consistently documented the high burden of depression in older home care recipients. An estimated 13% of both clinical and population-based samples had major depression (Bruce et al., 2002; Xiang, Leggett, Himle, & Kales, 2018) and an estimated 39% of a population-based sampled had subthreshold depression (Xiang et al., 2018). However, detection of depression is often poor, and treat- ment utilization inadequate or inappropriate (Bruce et al., 2002; Xiang et al., 2018). Recognition of depression in older home care recipients may be hindered by their high rates of physical comorbidity, dementia, and declines in social functioning (Davison, McCabe, Mellor, Karantzas, & George, 2009). Stigma, transportation, and shortage of specialty providers are additional barriers in accessing depression treatments among this high-risk population (Choi & Gonzalez, 2005).

CONTACT Xiaoling Xiang [email protected] Supplemental data for this article is available online at https://doi.org/10.1080/13607863.2019.1636207.

� 2019 Informa UK Limited, trading as Taylor & Francis Group

AGING & MENTAL HEALTH 2020, VOL. 24, NO. 11, 1904–1911 https://doi.org/10.1080/13607863.2019.1636207

Home care workers may play an important role in improving the detection and treatment of depression in older adults (Davison et al., 2009). These direct care work- ers are the eyes and ears of the home care system and important gatekeepers for identifying depressive symptoms in care recipients (National Research Council, 2015). However, research has shown that direct care workers across settings of long-term services and supports (LTSS) often do not receive training in depression and have per- ceptions inconsistent with the current scientific knowledge (Ayalon, Arean, & Bornfeld, 2008; Davison et al., 2009; Gleason & Coyle, 2016; Grundberg, Hansson, Religa, & Hilleras, 2016; Konnert, Huang, & Pesut, 2019; McCabe, Davison, Mellor, & George, 2008; McCrae et al., 2005). Given that improved knowledge on depression may lead to improved referral and care (McAiney et al., 2007; Mellor et al., 2010), identifying knowledge deficits among home care workers is an important first step in developing effect- ive training programs.

The present study extends the literature regarding the perceptions of late-life depression among home care work- ers from private duty home care agencies. Knowledge, atti- tudes, and experiences were explored based on the experiences of PCAs caring for older adults with depres- sion. To our knowledge, no studies have specifically exam- ined the perceptions of late-life depression by private duty PCAs. Previous studies often involved multiple occupations across the LTSS settings such as nurses, social workers, physical therapists, and direct care workers (Ayalon et al., 2008; Davison et al., 2009; Delaney, Barrere, Grimes, & Apostolidis, 2016; McCabe et al., 2008; McCrae et al., 2005). The limited literature on home care workers did not specify occupation titles and broadly examined perceptions of mental and behavioral health problems (Gleason & Coyle, 2016; Grundberg et al., 2016; Konnert et al., 2019). PCAs are direct care workers who tend to have the lowest level of education and training compared to other LTSS pro- viders. Their perceptions and knowledge may differ from other LTSS providers, as a previous study has shown that direct care workers were more likely to have knowledge inconsistent with the current scientific knowledge regard- ing depression than other providers (Ayalon et al., 2008).

Studies that have formally assessed direct care workers’ knowledge of depression have several methodological limi- tations. Many studies relied on either qualitative interview (Gleason & Coyle, 2016; Grundberg et al., 2016; McCabe et al., 2008; McCrae et al., 2005) or survey (Ayalon et al., 2008; Davison et al., 2009). A study involving mixed-meth- ods used single item or one-dimensional measures (Konnert et al., 2019). Previous studies therefore did not provide a comprehensive account of workers’ knowledge regarding the multidimensional aspects of depression eti- ology, symptoms, and treatments (Karantzas, Davison, McCabe, Mellor, & Beaton, 2012). In addition, studies have rarely examined workers’ practices caring for older adults with depression. A study on direct care workers’ beliefs regarding dementia has shown that while some of the workers’ beliefs were inconsistent with the current scientific view, their actual intuitive practices were consistent (Ayalon, 2009). Examining PCAs’ practice behaviors may reveal additional information regarding their train- ing needs.

The aims of the present study were two-fold: (1) to examine PCAs’ knowledge, beliefs, and attitudes towards late-life depression; and (2) to describe the experiences of PCAs caring for older adults with depressive symptoms, including the strategies they used to manage symptoms. We focused specifically on PCAs working for private duty home care to identify knowledge deficits and associated training needs specific to this workforce and care setting. We employed a mixed-methods design to gain a more comprehensive understanding of provider perceptions and used validated measures to provide a detailed assessment of their knowledge and attitudes. In addition, we examined not only workers’ beliefs but also their self-reported behav- iors in response to depression in older clients.

Methods

Design

This study used a mixed-methods convergent parallel design to form a more complete understanding of the research problem (Creswell & Plano Clark, 2011). Quantitative data were collected via a structured, anonym- ous online survey. Qualitative data were gathered via indi- vidual semi-structured interviews. Quantitative and qualitative data were collected concurrently, analyzed inde- pendently, and then combined to inform the interpretation.

Participant recruitment

We compiled a list of private pay home care providers in Michigan through calling local Area Agency on Aging and professional contacts of the first author. Recruitment and data collection occurred over a 7-month period. Recruitment methods involved phone calls, text messages, distribution of recruitment flyers by emails, voice-messag- ing reminders, and to a lesser degree, announcements dur- ing in-person visits to the offices of home care agencies. We also encouraged participants to forward our study information to other PCAs they knew. Study procedures and materials were approved by the University of Michigan Health Sciences and Behavioral Sciences Institutional Review Board.

Quantitative survey

Procedure Survey respondents were recruited using convenience sam- pling. A shortened link to our online survey was sent to potential participants and clicked by 92 PCAs. Five persons answered fewer than five questions and were excluded from the analysis, resulting in a valid sample size of 87. We did not ask survey respondents to name the agency they work for to ensure anonymity. Based on our contact with home care agencies, survey respondents likely came from no more than 15 agencies in Michigan. It took respondents an average of 31minutes to finish the survey. PCAs received an honorarium of $25 for completing the survey.

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Measures The first section of the survey included questions about socio- demographic information, qualification and training, and work experiences as a PCA. The second section of the survey included case vignettes to assess participants’ ability to iden- tify depression and a knowledge quiz on late-life depression (Pratt, Wilson, Benthin, & Schmall, 1992). The third section of the survey included a 19-item modified Depression Attitude Questionnaire (Botega, Mann, & Wilkinson, 1992).

Identification of depression using case vignettes. We used a vignette method in which two case descriptions, one representing mild/moderate depression (98 words) and one representing severe depression (97 words), were pre- sented to each survey participant. To mitigate the potential influence of the gender on case recognition, we prepared a male and a female version of the vignette for each depres- sion severity level, and randomly assigned the gender of the vignette to participants. We developed the vignette for

mild/moderate depression based on case descriptions from Wijeratne and Harris (2009) and used the case descriptions for severe depression from Landreville et al. (2001) with minor modifications (Appendix).

For each vignette, participants were first asked an open- ended question about diagnosis and then a closed-ended question about symptom severity (mild, moderate, or severe). This was followed by two sets of closed-ended questions about treatments perceived as helpful and actions likely to be taken by PCAs (Table 1). Possible responses were yes, maybe, and no.

Knowledge on late-life depression. We used the 12-item knowledge quiz on late-life depression by Pratt et al. (1992) for social service providers and the generic public. Items were selected based on expert consensus and exam- ination of the item discrimination index (Pratt et al., 1992). We used the knowledge quiz items without modification (Table 2). Response options were true or false.

Table 1. Personal care aides’ treatment and action recommendations regarding depression by case vignette (N¼ 87).

Mild/Moderatea Severeb P-valuec

Rate if each of the following item would be helpful for the person in the case vignette:

% rated helpful % rated helpful

1. Talk to a therapist 86.2 91.9 .267 2. Go to church, talk to a clergy, or pray 43.0 53.6 .096 3. Talk to a friend or relative 79.1 81.9 1.000 4. Go to see an herbalist 9.4 19.3 .021 5. Take medication 31.4 60.0 <.001 If this person were a client of yours, what would you do? % yes % yes 1. Talk to the client and help them replace negative thoughts

with positive ones. 96.6 95.4 1.000

2. Encourage clients to do activities they used to enjoy 96.6 92.9 .219 3. Help clients overcome obstacles to doing enjoyable activities 88.5 88.4 1.000 4. Distract them 46.4 56.6 .013 5. Call office to let them know 60.5 72.1 .021 6. Refer clients to a doctor or a health professional 47.6 71.8 <.001

Note. a. Indicates responses to questions in the mild/moderate depression case vignette. b. Indicates responses to questions in the severe depression case vignette. c. P-values from the McNemar Test comparing responses by depression severity in case vignettes.

Table 2. Personal care aides’ responses to the knowledge quiz on late-life depression (N¼ 87).

Late Life Depression quiz items % correctb

1. It is normal for older people to feel depressed a good part of the time. (False)a

71.8

2. Memory problems may be a sign of depression. (True) 62.4 3. Depression is easy to recognize in an older person who is physically

ill. (False) 76.5

4. Older people are more likely than younger people to say, “I am depressed.” (False)

90.6

5. A complete medical evaluation is needed to rule out physical reasons for depression. (True)

80.0

6. Family and friends can usually help the depressed older person by telling him/ her to “count your blessings” or “look at the bright side.” (False)

75.3

7. There is a higher suicide rate among the elderly than among younger adults. (True)

14.1

8. It is common for older people to talk about potential suicide. (False) 75.3 9. Most older persons who talk about committing suicide are not

serious. (False) 82.4

10. Health professionals often have difficulty diagnosing depression in an older person. (True)

41.0

11. If depression is severe, there is little the depressed person can do to help him/herself. (True)

26.2

12. Depression among the elderly can be effectively treated with medication. (True)

71.8

Mean % correct 64% (SD ¼24) Mean number of quiz items answered correctly 7.6 (SD ¼ 1.7)

Note. a. True/false response in parentheses indicates correct response to item. Explanations of these responses are available in Pratt et al. (1992).

b. Indicates % of correct response to item.

1906 X. XIANG ET AL.

Attitudes towards depression. We modified the Depression Attitude Questionnaire (DAQ), 20-item questionnaire devel- oped to measure depression attitude among general practi- tioners (Botega et al., 1992). The DAQ items measure three domains of attitudes: nature of depression, treatment prefer- ences, and professional reaction. We deleted the item “If depressed patients need antidepressants, they are better off with a psychiatrist than with a general practitioner” from the DAQ. We modified the wording of the remaining 19 items to better fit the educational background of PCAs and the nature of home care (Table 3). Participants responded on a 5-point Likert Scale, from “Strongly Disagree”, “Disagree”, “Neutral/ Undecided”, “Agree”, to “Strongly Agree”.

Qualitative interview

Procedure Interviewees were selected using purposive sampling. We selected PCAs with a longer work history and from differ- ent agencies to seek representation of diverse perspectives. The first author conducted all interviews in English and concluded recruitment until reaching a saturation point where the same themes were recurring, and no new insights were given by additional sources of data (Bowen, 2008). A total of 22 PCAs completed qualitative interviews by telephone (82%) or in person (18%). Interview partici- pants came from nine home care agencies in Michigan.

In individual semi-structured interviews, PCAs were asked open-ended questions about their experiences and challenges working with older adults with depression, their beliefs about late-life depression, and their practice behav- iors in response to depression in older adults. The inter- viewer took notes during interviews. In addition, all interviews were recorded using a digital voice recorder and transcribed verbatim by two trained research assistants not

involved in recruitment or data collection. Duration of the interviews averaged 49minutes. PCAs received an honorar- ium of $25 for completing the interview.

Data analysis

Quantitative survey data were analyzed using descriptive statistics and, when appropriate, bivariate comparisons using McNemar Test, in Stata 15.1 SE Version (StataCorp, College Stataion, TX). Qualitative data were analyzed using the RADaR technique (Watkins, 2017), a quick and compre- hensive qualitaitve analysis strategy. The RADaR technique involves using tables and spreadsheets to develop all-inclu- sive data tables that undergo several revisions for data reduction. The researchers first copy and paste similarly-for- matted data transcripts into an all-inclusive, Phase I data table and then graduately reduce data in the all-inclusive data to produce shorter, more concise data tables. Research team members engage in an interative process of coding and thematic analyses during each step of data reduction, moving from generating preliminary codes to the final phase of data table containing themes and repre- sentative quotes. A detailed description of the RADaR techinque is available in Watkins (2017). We chose the RADaR techique because it is user-friendly and suitable for team work and projects with a small sample size. All authors read and coded the transcripts. Codes were dis- cussed, consensus reached, and themes extracted.

Results

Quantitative findings

Characteristics of survey participants Most survey participants were female (94%). Their age ranged from 18 to 67 years (Mean ¼ 41, SD ¼ 14.4). Most

Table 3. Personal care aides’ responses to the modified-Depression Attitude Questionnaire (N¼ 87).

Depression attitude questionnaire items % agree or

strongly agree % neutral or undecided

% disagree or strongly disagree

Nature of depression 1. More of my clients have had depressive symptoms. 32.6 33.7 33.7 2. Most older adults are depressed due to their recent hardships. 42.5 28.7 28.8 4. Severe depression is caused by a chemical imbalance in the brain. 65.5 32.2 2.3 5. It is hard to tell whether older adults are just unhappy or if they have

clinical depression that needs treatment. 40.2 33.3 26.5

6. There are two main groups of depression: psychological and chemical depression.

57.0 34.9 8.1

7. People with depression have poor stamina in dealing with life difficulties. 68.6 15.1 16.3 8. Some older adults are depressed because they had hardship in early life. 40.2 40.2 19.6 10. Some older adults have depression because they respond

to hardship more negatively. 28.2 43.5 28.3

11. Depression is a natural part of being old. 8.1 19.8 72.1 Treatment preferences 3. Most depression in older adults improves without medication. 12.6 54.0 33.4 12. A home care worker could be a useful person to support

depressed older adults. 91.9 4.7 3.4

14. If an older adult does not respond to what their regular doctor recommends, not much else can be done.

5.8 21.8 72.4

16. Therapy does not seem to help older adults with depression. 8.1 39.1 52.8 17. Medication is usually successful in treating older adults with depression. 37.9 56.3 5.8 18. Therapy for older adults with depression should only be done by a professional. 47.1 28.7 24.2 19. If therapy were freely available, it would be more beneficial to older adults

than medication in treating depression. 57.7 32.9 9.4

Professional reaction 9. I feel comfortable meeting the needs of older adults with depression. 80.5 10.3 9.2 13. Working with depressed older adults is difficult. 32.2 33.3 34.5 15. It is rewarding to care for depressed older adults. 60.9 34.5 4.6

Note. Original response options were “Strongly Disagree,” “Disagree,” “Neutral/Undecided,” “Agree,” and “Strongly Agree.” Some response options presented in this table were combined.

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participants were non-Hispanic white (56%), followed by non-Hispanic black (29%), Hispanic (9%), and other race (7%). Most participants had a high school diploma or GED (95%). Nearly half (48.6%) of participants had a two-year college degree or some college education and 26% partici- pants had a four-year college degree. When asked about their certification status, most participants (71%) reported non-certified whereas about 10% reported being Certified Nursing Assistants and 20% reported being certified Home Health Aides. Participants had worked for an average of 6.3 years as a PCA (SD ¼ 6.5). On average, participants worked 30 hours per week (SD ¼ 15.4) and served three cli- ents concurrently (SD ¼ 3.2). When asked to rate their own depressive symptoms, 8.6% participants scored � 3 on the 2-item Patient Health Questionnaire (PHQ-2) (L€owe, Kroenke, & Gr€afe, 2005). (Results not shown in tables).

Diagnostic recognition The percent “correct” response on the vignette-identifica- tion was 86.2% in the mild/moderate case and 78.2% in the severe case. Correct responses included “depression” or “depressed”. Examples of incorrect responses included “lonely”, “insomnia”, and ‘grief” in the mild/moderate case and “dementia”, “memory loss”, “anxiety”, and “suicidal” in the severe case. Slightly over half of participants (54.1%) who correctly identified depression in the mild/moderate case (N¼ 75) identified symptom level as mild or moderate. Most participants (86.8%) who correctly identified depres- sion in the severe case (N¼ 68) identified symptom level as severe. (Results not shown in tables).

Treatments recommended As shown in Table 1, there was a high rate of endorsement of talking to a therapist (86.2%, 91.9%) and talking to a friend or relative (79.1%, 81.9%) in both vignettes. Endorsement of taking medication differed significantly by depression sever- ity (p<.001). While less than one-third of PCAs (31.4%) rated taking medication as helpful in the mild/moderate case, 60% of PCAs rated medication as helpful in the severe case. When asked what they would do to help clients described in the vignettes, most PCAs would consider talking to clients (96.6%, 95.4%), encouraging them to do enjoyable activities (96.6%, 92.9%), and helping them overcome obstacles to doing enjoyable activities (88.5%, 88.4%) in both vignettes. Nearly three-quarters (72.1%) of PCAs would notify the office (home care agency) in the severe case compared to 60.5% in the mild/moderate case (p¼.021). A significantly higher pro- portion of PCAs would refer clients to a doctor or a health professional in the severe case (71.8%) than in the mild/mod- erate case (47.6%).

Late life depression knowledge quiz The mean number of items answered correctly on the late life depression knowledge quiz was 7.6 (SD ¼ 1.7) out of 12 items, with 64% mean percentage correct on each item (SD ¼ 24). The knowledge items most often missed involved suicide among older adults (14.1% correct), self- help ability of the depressed person (26.2% correct), diffi- culty of diagnosing depression in older adults (41% cor- rect), and the co-occurrence of memory problem in late-life

depression (62.4% correct). Over 70% of the responses for the remaining items were correct (see Table 2).

Attitudes towards late-life depression questionnaire As shown in Table 3, most PCAs disagreed or strongly dis- agreed that “Depression is a natural part of being old” and agreed or strongly agreed that “People with depression have poor stamina in dealing with life difficulties” (68.6%). Regarding treatment preferences, over half disagreed or strongly disagreed that “Therapy does not seem to help older adults” and believed that therapy would be more beneficial than medication in treating depression, whereas only one-third (37.9%) agreed or strongly agreed that “Medication is usually successful in treating older adults with depression”. Most PCAs felt that they were comfort- able meeting the needs of older adults with depression (80.5%) and agreed that a home care worker could be a useful person to support depressed older adults (91.9%).

Qualitative findings

Characteristics of interviewees Most participants were female (91%). Their age ranged from 23 to 67 years (Mean ¼ 43, SD ¼ 15.8). Most participants were non-Hispanic white (48%), followed by non-Hispanic black (43%) and Hispanic (9%). All participants had a high school diploma or GED; 43% had a two-year college degree or some college education and one third had a four-year col- lege degree. Participants had worked for an average of 6.8 years as a PCA (SD ¼ 5.4). On average, participants worked 30 hours per week (SD ¼ 13.0) at an hourly rate of $12.3 (SD ¼ 2.1). (Results not shown in tables).

Individualized care A prominent theme from PCAs’ narratives was individual- ized care, reflected in 3 sub-themes: recognition and assessment of depression, attitude towards depression treatment, and practice behaviors caring for older adults with depression.

Recognition and assessment of depression. PCAs’ assess- ment of depression in clients is highly individualized. When asked how they knew an older client was depressed, PCAs named a few common symptoms of depression in clients, including loss of interest or pleasure in activities, excessive sleepiness, mood change, sadness, crying, facial expressions that convey sadness or feeling down, loss of appetite, and disengagement with PCAs. One PCA described:

Some of the signs, I know it can fluctuate depending on the person, but some of the signs I have noticed are sleeping a lot because for that particular client. The first I had her she was pretty much up the whole time. The second time she was pretty much sleeping the whole shift. There may be days …where she was more compliant than normal and the other day she was really resistant. I guess for some reason she wasn’t in the mood to do certain things that she normally was…Not wanting to get out and about. Maybe not wanting to do activities, like maybe that person is really into card games and all of a sudden, they never want to play card games anymore. It’s like they are losing interests in activities tha

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