Since the early 1990s, the average global life expectancy has risen from 64.8 years to 70 years (United Nations Population Fund, 2017). Increasing age brings challenges associated with living longer. Coping with the complexities of an aging population, many of whom have at least one chronic illness, will place particular difficulties on societies where life expectancy is escalating. In Ireland, it has been predicted that there will be a 46% increase in older adults between 2011 and 2026 (Central Statistics Office, 2017). The impact of the changing demography is that there will be an increased need for long-term care facilities (LTCFs) for older adults. Between 2015 and 2030, demand for long-term care (LTC) in Ireland is projected to increase from 29,000 to 44,600 beds, with the largest increase among adults older than 85 (Wren et al., 2017). New Zealand, with a relatively similar population to Ireland, reports similar increases from 33,006 residents in 2015–2016 to 60,080 in 2031–2032 (Technical Advisory Services as cited in Burrow, Gilmour, & Cook, 2017). Close to one quarter of the total annual deaths in Ireland occur in LTCFs (Department of Health, 2018). Several other countries, including England (Public Health England, 2018) and the United States (Temkin-Greener et al., 2013) have relatively similar death rates (21.8% and 25% deaths in LTCFs, respectively).
The changing role of nurses, due to assuming new responsibilities, combined with increased requirements for documentation of care, has reduced their bedside care provision (Drennan et al., 2018). Health care assistants (HCAs) are the primary direct caregivers in many LTCFs (Beck, Törnquist, Broström, & Edberg, 2012; Fryer, Bellamy, Morgan, & Gott, 2016). However, research related to their role in end-of-life (EOL) care is limited. The HCA role has been described as supporting the care delivery under the supervision and direction of qualified nursing personnel (Department of Health & Children, 2001; Shannon & McKenzie-Green, 2016). Other countries use a variety of titles for roles similar to HCA; therefore, for the purpose of the review, HCA is used as the generic description. For example, in the United States, the most common title is certified nursing assistant (Bureau of Labor Statistics, 2018); other titles are nursing assistant in Sweden (Åhsberg & Carlsson, 2013) and resident care aide in Canada (Waskiewich, Funk, & Stajduhar, 2012).
From an international perspective, HCA education has been reported as variable and inadequate, with a need for more consistency and standardization (Drennan et al., 2018). In Ireland, although a HCA qualification is not yet a mandatory requirement for employment purposes, many health providers seek HCA qualification when recruiting care staff. Training involves completion of a Healthcare Support Certificate of 1,200 hours of education, inclusive of classroom and work experience, normally provided on a part-time basis over 1 year (Quality and Qualifications Ireland, 2018). The EOL care module of the certificate is optional; therefore, those who undertake the latter may not have specific EOL care training. Each country has its own HCA training system. In the United States, 75 hours of initial training and at least 12 hours annually is required (U.S. Government Publishing Office, 2011), whereas in the United Kingdom, a Care Certificate (workbook of 15 standards) was introduced in 2015. Although not a statutory requirement, there is an expectation that all HCAs complete the workbook (Skills for Care, 2018). Given the primary caregiving role of HCAs at EOL, it is important that their role and responsibilities, education, views, and experiences in EOL caregiving are clear and understood by service providers and workforce planners.
The current scoping review was guided by Arksey and O'Malley's (2005) framework and the Guidance for the Conduct of JBI Scoping Reviews (Peters et al., 2015). Five stages of a scoping review are: identifying the research question (Stage 1); identifying relevant studies (Stage 2); study selection (Stage 3); charting the data (Stage 4); and collating, summarizing, and reporting the results (Stage 5). For the purposes of the review, a HCA was understood as a member of staff who supports the delivery of resident care under the direction of a RN. A LTCF was understood as any residential setting whose major focus is provision of LTC for older adults (age >65). No specific definition of EOL was deployed.
Identifying the Research Question
The aim of the review was to identify and map current research evidence on the HCA role, education, and experience in EOL care in LTCFs for older adults. Three broad questions on the topic were posed:
- What are the role and responsibilities of HCAs caring for residents at EOL in LTCFs?
- What EOL education do HCAs have, or need, to provide EOL care in LTCFs?
- What are the views and experiences of HCAs in caring for residents at EOL in LTCFs for older adults?
Identifying Relevant Studies
Studies that included HCAs who work in LTCFs for older adults and care for residents at EOL were considered. Studies covered any aspect of the HCA's role and responsibilities, education, and experience in care provision at EOL. Excluded studies were those where HCAs were included in conjunction with other staff but were not distinguished in the analysis and therefore could not inform the review. No geographical limitation was made.
Primary research of qualitative, quantitative, and mixed method studies was included. Theses and dissertations were also considered if primary research was reported. The database searches completed on July 13, 2018, included PsycINFO, MEDLINE, CINAHL, ProQuest, and PubMed. Limits applied were: English language and 10 years. The key search words were health care assistant (24 terms), long-term care facility (16 terms), and end of life (seven terms). Boolean operators AND and OR were used, as well as parenthesis and truncation (*) to increase efficiency of the search.
The result from all databases was 498 articles. After a process of removing duplicates (n = 61), followed by title screen, abstract screen, full-text screen, and reference list scanning, 32 studies were reviewed. On review of the included studies, with the exception of an unpublished thesis, all were noted to have been peer reviewed. A PRISMA flow chart was created to summarize the study selection process (Figure 1).
Charting the Data
Formal methodological assessment of studies is not a criterion for scoping reviews (Arksey & O'Malley, 2005; Peters et al., 2015); therefore, it was not completed. In line with the study protocol, all charted data were aligned with the three research questions (Figure 2).
Summary of data charting.
Note. HCA = health care assistant; EOL = end-of-life; LTCF = long-term care facility.
The 32 included studies were representative of seven countries, namely the United States (n = 8), Sweden (n = 8), Canada (n = 6), United Kingdom (n = 4), Ireland (n = 3), New Zealand (n = 2), and Australia (n = 1). Seventeen studies took a qualitative approach using semi-structured interviews (n = 13) or focus groups (n = 4), 12 studies took a quantitative approach (survey questionnaires), and three studies were mixed method (combination of questionnaires and interviews). The results are presented below under the headings of the three questions asked of the literature.
What Are the Role and Responsibilities of HCAs Caring for Residents at EOL in LTCFs?
Three main areas of the HCA role and responsibilities were identified in the literature and mainly emanated from 15 qualitative studies where aspects of the role were described during interviews or focus groups. Aspects of the role and responsibilities arose to a lesser extent in quantitative studies. Physical caregiving was identified as a key aspect of the role, followed by emotional support for residents and relatives. The third dimension of the role related to the physical environment.
Physical Care. It was evident from the literature that physical caregiving was the predominant element of the HCA care role at EOL (Åhsberg & Carlsson, 2014; Beck et al., 2012; Dwyer, Hansebo, Andershed, & Ternestedt, 2011; Funk, Waskiewich, & Stajduhar, 2014; Holmberg, Hellstrom, & Osterlind, 2019; Kaasalainen, Brazil, & Kelley, 2014; Kortes-Miller, Jones-Bonofiglio, Hendrickson, & Kelley, 2016; McClement, Wowchuk, & Klaasen, 2009; McDonnell, McGuigan, McElhinney, McTeggart, & McClure, 2009; Nochomovitz et al., 2010; Preshaw, 2017; Waskiewich et al., 2012). Maintaining the resident's comfort was part of EOL caring (Funk et al., 2014; Holmberg et al., 2019; McClement et al., 2009; Waskiewich et al., 2012) and was demonstrated by observing changes, identified by Sahlberg-Blom, Hårsmar, and Österlind (2013) as subtle (e.g., different smell, look, behavior) or manifest (e.g., bodily changes, self-determination), and through symptom management (Holmberg et al., 2019; Preshaw, 2017; Young, Froggatt, & Brearley, 2017), such as identifying and reporting pain (Beck et al., 2012; Cornally et al., 2016; Jansen et al., 2017; McClement, Lobchuk, Chochinov, & Dean, 2010; McClement et al., 2009; Phillips, Davidson, Jackson, & Kristjanson, 2008; Sahlberg-Blom et al., 2013; van Riesenbeck, Boerner, Barooah, & Burack, 2015).
There were conflicting findings in relation to the ability of HCAs to identify EOL symptoms when compared with nurses. One study reported that HCAs (n = 261) had significantly more difficulty recognizing EOL symptoms than nurses (χ2[2, N = 356] = 23.88, p ≤ 0.001) (Frey, Boyd, Foster, Robinson, & Gott, 2016), whereas another study reported that HCAs (n = 15) recognized significantly more symptoms than nurses (e.g., nausea [40% vs. 10%, p = 0.20]) (Cornally et al., 2016). This disparity may be impacted by the differing EOL definitions and time frame within which surveys were completed. Caring for the deceased after death was also noted as a HCA responsibility (Barooah, Boerner, van Riesenbeck, & Burack, 2015; Fryer et al., 2016; McClement et al., 2009) and included washing (Dwyer et al., 2011), dressing (Åhsberg & Carlsson, 2013), and preparing the body for the morgue (Funk et al., 2014).
Emotional Support. Emotional support for residents on the part of HCAs included alleviating anxiety (Preshaw, 2017), engaging in conversation (Holmberg et al., 2019), attending to spiritual needs (Shanagher, 2011; Waskiewich et al., 2012), and advocating on behalf of the resident (McClement et al., 2009; Young et al., 2017). Not leaving the resident alone as EOL approached was also noted as part of the HCA role (Dwyer et al., 2011; McClement et al., 2009; McClement et al., 2010; Waskiewich et al., 2012). The dying resident was also supported by non-verbal communication such as touch (Åhsberg & Carlsson, 2014; McClement et al., 2009), body language (Dwyer et al., 2011), or presence (Holmberg et al., 2019). Comforting and supporting the resident's family or relatives was another identified part of the HCA role (Åhsberg & Carlsson, 2014; Beck et al., 2012; Fryer et al., 2016; Holmberg et al., 2010; McClement et al., 2010; Shanagher, 2011; Waskiewich et al., 2012) even where “staff recognized that supporting families was not part of their job” (Vandrevala et al., 2017, p. 160).
Environment. Maintaining a calm and peaceful atmosphere (Åhsberg & Carlsson, 2014; Beck et al., 2012; Holmberg et al., 2019; Waskiewich et al., 2012) and clean physical environment (Dwyer et al., 2011; Waskiewich et al., 2012) were also described as an element of the HCA role.
What EOL Education Do HCAs Have, or Need, to Provide EOL Care in LTCFs?
HCAs have a wide range of EOL educational backgrounds. In addition, studies reported education interventions that took different approaches, all of which reported largely positive results. Three major areas for further education were identified: the process of EOL; communication; and specific clinically related skills and knowledge.
End-of-Life Education. Twenty-nine studies referred to EOL education in some form, with the prior level and type of EOL education varying across 10 studies that included specific information in this regard. Some HCAs relied on experience (Fryer et al., 2016; Holmberg et al., 2019; Shanagher, 2011), others reported HCAs as having some EOL training, which was not elaborated (Cornally et al., 2016; Frey et al., 2016; Funk et al., 2014; McClement et al., 2010) and some provided detail, for example, McDonnell et al. (2009) reported that 18% of HCAs (n = 154) had attended palliative education in the previous 2 years.
Education Interventions. Six education interventions were reported, including study circles (Beck, Jakobsson, & Edberg, 2014; Beck, Törnquist, & Edberg, 2014), experiential learning in hospice (Kaasalainen et al., 2014), high fidelity simulation (Kortes-Miller et al., 2016), a series of education classes coupled with nurse support (Phillips et al., 2008), and weekly education sessions (6x) (Malik & Chapman, 2017). All reported positive results, such as HCAs being more confident (Beck, Tornquist, et al., 2014; Phillips et al., 2008) and having better communication skills (Kortes-Miller et al., 2017). However, as a result of better education, frustration with colleagues (Beck, Törnquist, et al., 2014) and lack of acceptance from nurses (Phillips et al., 2008) were perceived negatively by some participant HCAs.
Education Needs. Three core education needs were identified: (a) better understanding of the process of dying/palliative care (Beck et al., 2012; Cornally et al., 2016; Dwyer et al., 2011; McDonnell et al., 2009; Preshaw, 2017; Shanagher, 2011; van Riesenbeck et al., 2015); (b) improved communication skills (Beck et al., 2012; Dwyer et al., 2011; Frey et al., 2016; Holmberg et al., 2019; Malik & Chapman, 2017; McDonnell et al., 2009; Preshaw, 2017; Shanagher, 2013; Vandrevala et al., 2017); and (c) clinical skills and knowledge related to chronic illness (Malik & Chapman, 2017), dementia-specific EOL care (Vandrevala et al., 2017), and the use of pain assessment tools (Jansen et al., 2017; McClement et al., 2010; van Riesenbeck et al., 2015).
What are the Views and Experiences of HCAs in Caring for Residents at EOL in LTCFs for Older Adults?
Overall, the studies demonstrated that HCAs feel marginalized and undervalued. Moreover, they experience a range of largely negative stresses and emotions associated with resident deaths. Caregiving for HCAs was focused mainly on comfort and they developed close bonds with the resident and family. However, they felt torn between their obligation to care for the dying resident and their other responsibilities toward other residents, which was a source of frustration for HCAs.
Feeling Marginalized and Under-valued. A major issue arising in the literature was that HCAs feel under-valued, powerless, marginalized, and/or excluded from involvement in care decisions (Beck, Törnquist, et al., 2014; Dwyer et al., 2011; Fryer et al., 2016; Jansen et al., 2017; Kaasalainen et al., 2014; McClement et al., 2010; McDonnell et al., 2009; Preshaw, 2017; Sahlberg-Blom et al., 2013; Young et al., 2017). The professional hierarchy (Fryer et al., 2016; Jansen et al., 2017) and perceived lack of leadership (Beck et al., 2012) had a negative impact on communication and relationships within the team. Support from management was viewed positively (Beck et al., 2012; Boerner, Gleason, & Jopp, 2017; Vandrevala et al., 2017); however, Shanagher (2011) noted that delegation also led to feelings of isolation. When HCAs (N = 2,636) reported better communication with other team members, directors of nursing reported better EOL assessment (p = 0.043) and care delivery processes (p = 0.098) (Zheng & Temkin-Greener, 2010).
Emotions and Coping. Being unable to relieve suffering at EOL negatively impacted HCAs' emotions (Åhsberg & Carlsson, 2014; Beck et al., 2012; Funk et al., 2014; Preshaw, 2017; Vandrevala et al., 2017; Young et al., 2017). Grief after a death was reported when the relationship was close and had developed over time (Boerner, Burack, Jopp, & Mock, 2015; Funk et al., 2014; Preshaw, 2017) and some HCAs likened their experience of grief to that of a bereaved family member (Boerner et al., 2015; Shanagher, 2011; van Riesenbeck et al., 2015). Although HCAs used a variety of strategies to cope with resident deaths (Barooah et al., 2015; Fryer et al., 2016; Funk et al., 2014; Vandrevala et al., 2017; Waskiewich et al., 2012), distress from grief was associated with higher levels of burnout (Anderson & Ewen, 2011) and complications from grief were found to be related to depersonalization (Anderson, 2008). Some HCAs were guilt-ridden when they could not give the care they wished due to lack of time and resources (Beck et al., 2012; Dwyer et al., 2011; Funk et al., 2014).
Relationships. The relationship with the resident was expressed as a close or familial bond (Beck et al., 2012; Fryer et al., 2016; Funk et al., 2014; Holmberg et al., 2019; Kortes-Miller et al., 2016; McClement et al., 2009; Shanagher, 2011; Vandrevala et al., 2017; Waskiewich et al., 2012). HCAs also developed close links described as “journeying with” family members (Shanagher, 2011, p. 43). After death, HCAs “missed all the family, too” (Funk et al., 2014, p. 29), but there were occasions when the relationship was stressful (Funk et al., 2014; Preshaw, 2017; Vandrevala et al., 2017). On the other hand, appreciation from families was affirming (Beck et al., 2012; Funk et al., 2014; Vandrevala et al., 2017). EOL care focused on resident comfort (Funk et al., 2014; McClement et al., 2009; Waskiewich et al., 2012), and HCAs were frustrated when residents were perceived to be suffering (Funk et al., 2014; Vandrevala et al., 2017). Another concern was perfunctory or passive caregiving (McClement et al., 2010; Preshaw, 2017). Respect for the deceased body was considered important (Åhsberg & Carlsson, 2014; Barooah et al., 2015; Funk et al., 2014), as was the after-death ritual (Barooah et al., 2015; Dwyer et al., 2011; McClement et al., 2009). Quick bed filling after a death was an expressed concern in four studies (Barooah et al., 2015; Beck et al., 2012; Fryer et al., 2016; Funk et al., 2014).
Resources. HCAs were conflicted between taking the time to care for the dying resident and their responsibilities to other residents and this was a source of guilt and/or frustration (Åhsberg & Carlsson, 2013; Dwyer et al., 2011; Funk et al., 2014; Holmberg et al., 2019; Kortes-Miller et al., 2016; McClement et al., 2010; Preshaw, 2017; Vandrevala et al., 2017; Waskiewich et al., 2012). Poor staffing levels were also an expressed concern (Beck et al., 2012; Beck, Törnquist, et al., 2014; Dwyer et al., 2011; McDonnell et al., 2009; Preshaw, 2017).
The aim of the current review was to identify and map current research evidence of the HCA role, responsibilities, education, and experience in EOL care in LTCFs for older adults. Methodologically, studies included qualitative, quantitative, and mixed method approaches. The key findings were that HCAs feel marginalized and undervalued, they need and desire EOL education, and resident deaths have a negative impact.
Overall, the literature strongly demonstrated that participants in the studies included in the review felt undervalued or marginalized. The reasoning behind this sense of marginalization links to other issues, such as the sense of exclusion from care decisions, inadequate communication, insufficient education, and perceived lack of support. The sense of being undervalued on the part of HCAs is not exclusive to EOL care in LTC and has been reflected in other literature (Glackin, 2016; Gray et al., 2016; Torsney, 2010).
HCAs are also vulnerable to negative emotions and stresses after a resident's death. Where HCAs reported complicated grief, which is grief that cannot be openly acknowledged (Doka, 2002), higher levels of depersonalization were evident (Anderson, 2008). Grief can lead to burnout, which presents as overwhelming exhaustion, cynicism, and detachment leading to stress (Maslach & Leiter, 2016). Guilt and frustration among HCAs were linked to resource constraints. Research on guilt among nurses concluded that when guilt becomes excessive it can have a negative psychological impact (Duarte & Pinto-Gouveia, 2017). Given the findings of the current review, the conclusion is equally applicable to HCAs. The frustrations and stresses expressed by HCAs in several studies, such as being torn between caring for dying residents versus other duties, align with features of moral distress identified in two reviewed studies (Funk et al., 2014; Young et al., 2017), which has previously been defined by Jameton (1984) as occurring when the correct course of action is known, but due to organizational constraints taking the action is impeded. The emotions and stresses of coping with resident deaths are not mutually exclusive. A HCA who is grieving the loss of a resident may also have feelings of guilt as well as experience burnout and moral distress. Thus, it is vital that employers are aware of the risks to HCAs and have clear policies, procedures, and communication mechanisms in place to support them.
A wide range of EOL education levels were reported. Lack of education implies a reliance on intuition, limited knowledge, or experience rather than having a comprehensive understanding of EOL caring. However, education interventions demonstrated that when HCAs were given the opportunity to discuss and reflect, they gained confidence in their role. International-level programs, such as the Gold Standards Framework® (2018) in the United Kingdom and the Compassionate End of Life Care Review (Irish Hospice Foundation, 2018) in Ireland, are workshop-based reflective education programs that have proved successful. An alternative means of education alluded to was that newer HCAs work with more experienced colleagues (Barooah et al., 2015; van Riesenbeck et al., 2015). This approach has worked through mentoring and modeling that helped build relationships with residents and colleagues (Tyler & Parker, 2011).
In terms of role, HCAs were most comfortable with physical care, which was not unexpected as the basis of a HCA job description internationally is supporting residents with activities of daily living (Bureau of Labor Statistics, 2018; Drennan et al., 2018; Health Careers, 2018; Health Service Executive, 2006). Physical caring included symptom management, and studies suggested that HCAs lacked education in pain assessment, so their judgments were largely subjective, with the implication that pain assessment depended on how well the HCA knew the resident and could recognize signs of pain. When formal pain assessment was completed by HCAs, it minimized conflict and provided HCAs a role in determining care (Phillips et al., 2008).
The need for communication training was reflected by the challenges reported in provision of emotional support for residents and within the care team. The challenges with residents may be due to fear of not knowing what to say and fear of having to answer difficult questions as identified by Holman, Sawkins, and Hockley (2011). Other literature has identified communication skills as a necessary part of HCA training to support the relationship with residents and facilitate teamwork and care delivery (Ryan et al., 2014; Winchester, 2003).
Resource constraints identified in the current review reflect a perception of a burdensome workload associated with perceived low staff levels. The National Standards for Residential Care Settings for Older People in Ireland state the workforce must have the required skills, experience, and competencies to respond to the needs of residents (Health Information and Quality Authority, 2016), but no staff ratios are indicated. Across Europe, there are variable levels of skill mix throughout different health care services (Drennan et al., 2018), not just in LTC. Adequate organizational resources are fundamental to ensuring the HCA workload is manageable and that HCAs can access appropriate education and support to enable them to provide the highest quality EOL care.
Strengths and Limitations
Strengths of the review were that search terms were assiduously planned and facilitated a comprehensive database search. The diverse geographical locations of studies as well as the combination of methodological approaches add strength to the results of the current review. The limitations include that the time and language limits applied may have led to omission of some earlier studies. The search did not include grey literature, which potentially could have further contributed to the results.
Five implications for practice have been identified, all of which have the potential to negatively impact on HCAs' ability to provide best quality EOL care. These are:
- HCAs are confident in physical care provision, but less comfortable with emotional support.
- HCAs feel undervalued and ignored within the care team.
- HCAs desire and need EOL education.
- HCAs need support to cope with deaths of residents.
- HCAs face EOL care dilemmas due to workload pressures.
The current scoping review has explored the HCA's role, responsibilities, education, and experiences in EOL care in LTCFs and has demonstrated the complex nature of caring in this context. Three major needs that arose from the literature are (a) the better integration of HCAs into the care team, (b) appropriate EOL care education, and (c) support to cope with resident deaths. The results contribute to an increased understanding of the HCA in EOL care in LTCFs and has demonstrated that despite different health systems and role titles, nationally and internationally, HCAs have broadly similar roles and concerns. Further research of this important topic is required.
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