Research for Evidence Based Practice
Br J Learn Disabil. 2020;48:69–77. wileyonlinelibrary.com/journal/bld | 69© 2020 John Wiley & Sons Ltd
Received: 9 August 2019 | Revised: 4 December 2019 | Accepted: 11 January 2020
DOI: 10.1111/bld.12318
O R I G I N A L A R T I C L E
Palliative care needs of direct care workers caring for people with intellectual and developmental disabilities
Jennifer A. Gray | Jinsook Kim
School of Health Studies, Northern Illinois University, DeKalb, IL, USA
Correspondence Jennifer A. Gray, School of Health Studies, Northern Illinois University, 250 Wirtz Hall, DeKalb IL 60115, USA. Email: j-gray@niu.edu
Funding information Northern Illinois University CHHS Community Endowment Fund grant; Northern Illinois University
Accessible summary • Palliative care is a holistic model of care that lessens suffering and improves qual-
ity of life for individuals who are very sick. • As people with intellectual and developmental disabilities (PWIDD) get very sick,
direct care workers (DCWs) are more likely to provide palliative care. • Researchers need to know more about what palliative care training DCWs need. • One hundred and forty-nine (149) DCWs filled out surveys about their palliative
care training needs. • The research showed that DCWs need more training in certain areas, such as
cultural competence, effective communication, post-death logistics and legal matters.
Abstract Background: Direct care workers (DCWs) caring for people with intellectual and developmental disabilities (PWIDD) provide palliative care, but research indicates DCWs are ill-equipped to do so. This study aimed to assess DCWs’ palliative care experience and training and their perceived training needs. Materials and Methods: Staff trained as DCWs (n = 149) in organisations that serve PWIDD were surveyed in suburban and rural areas of a U.S. Midwestern state. Descriptive statistics were run, including t tests, analysis of variance, Scheffe's tests for pairwise comparison, Pearson's correlation, Fisher's exact tests and chi-square tests. Results: Participants reported limited experience in legal matters, yet had substantial experience in assisting PWIDD with pain, distress and bereavement. Training was in- adequate but desired for cultural competence, effective communication, post-death logistics and legal matters. Rural DCWs reported less palliative care experience and training than suburban counterparts. Conclusions: The results demonstrate the need for specific types of palliative care training among DCWs caring for PWIDD and that such training should be prioritised in rural agencies. Future research can explore ways to maximise training effectiveness.
K E Y W O R D S
direct care workers, intellectual and developmental disabilities, needs assessment, palliative care, training
70 | GRAY And KIM
1 | INTRODUC TION
Direct care workers (DCWs) play a critical role in the lives of people with intellectual and developmental disabilities (PWIDD) throughout their lives to support good health, community integration and independence (Paraprofessional Healthcare Institute, 2013).1 Palliative care is a holis- tic model of care that focuses on the alleviation of suffering and on im- proving quality of life by meeting the physical, social, psychological, cultural and spiritual needs of people with chronic and life-limiting ill- nesses and their families (World Health Organization, 2015). With in- creasing longevity (Coppus, 2013; World Health Organization & The World Bank, 2011), more PWIDD are experiencing chronic health con- ditions, increasing the likelihood of palliative care services needed (McCarron, McCallion, Fahey-McCarthy, & Connaire, 2010; Ryan, Guerin, Dodd, & McEvoy, 2011a). Direct care workers often do not have the necessary skills or experience to provide palliative care for PWIDD (McCarron et al., 2010; Ng & Li, 2003; Ryan et al., 2011a; Stein, 2008).
Staff in the intellectual and developmental disability (IDD) field have shown a lack of knowledge and efficacy in providing palliative care (Cartlidge & Read, 2010; Fahey-McCarthy, McCarron, Connaire, & McCallion, 2009; Ng & Li, 2003; Ryan, McEvoy, Guerin, & Dodd, 2010). The literature demonstrates that the care provided to PWIDD can de- teriorate if IDD staff receive inadequate palliative care training (Gray & Kim, 2017; Kim & Gray, 2018; Reynolds, Guerin, McEvoy, & Dodd, 2008; Ryan et al., 2011a; Watters, McKenzie, & Wright, 2012).
Cognitive and motor-related disabilities can make it more diffi- cult for PWIDD to communicate their needs for palliative care as well as how they feel (Stein, 2008). Subsequently, staff visual assess- ment of PWIDD pain levels and health status is critical (Friedman, Choueri, & Gilmore, 2008).
Though DCWs generally do not participate in the formal palli- ative care decision-making process to produce the final advance directives document, it is important that they are familiar with ad- vance directive concepts (Lohiya, Tan-Figueroa, & Crinella, 2003). Their conversations with family members may be critical as the ad- vance directives are constructed (Guinn & Winston, 2018).
Whilst family members often have keen insights regarding the palli- ative care of family members with IDD (Stein, 2008), they also may seek to protect their loved ones from knowledge of their illness (Ryan, Guerin, Dodd, & McEvoy, 2011b). IDD staff can benefit from more training to speak with family members and PWIDD more specifically about issues specific to death and dying (Codling, Knowles, & Vevers, 2014; Ryan et al., 2011b; Stein, 2008; Tuffrey-Wijne, Rose, Grant, & Wijne, 2017).
Moreover, though research has shown that IDD staff understand challenges that PWIDD may encounter regarding bereavement, addi- tional training can increase staff's efficacy (Reynolds et al., 2008) and knowledge (Watters et al., 2012) in providing bereavement supports. For example, staff may overestimate PWIDDs’ conceptual understand- ing of death and not fully appreciate PWIDDs’ behavioural difficulties due to grief (Watters et al., 2012; McEvoy, MacHale, & Tierney, 2012).
To date, there is limited needs assessment data for IDD staff providing palliative care. Hahn and Cadogan (2011) conducted a comprehensive needs-based palliative care train-the-trainer cur- riculum for IDD staff based on a comprehensive needs assessment and process to identify and validate the curriculum topics (Hahn & Cadogan 2011). Ng and Li (2003) also conducted a needs assessment of nursing IDD staff regarding death and dying, using an open-ended response format. Participants voiced needs to improve their skills in caring for PWIDD who are dying and to develop their verbal and nonverbal communication skills (Ng & Li 2003) .
Other IDD-related studies have focused on end-of-life staff train- ings. Such studies have identified IDD staff challenges such as when and how end-of-life care should be provided (Tuffrey-Wijne, Hogg, & Curfs, 2007), assessing and managing pain (Fahey-McCarthy et al., 2009; Friedman, Choueiri, & Gilmore, 2008), providing proper nutrition and hydration (Fahey-McCarthy et al., 2009; Friedman et al., 2008), de- veloping cultural competency (Fahey-McCarthy et al., 2009) and com- municating with PWIDD and family members about end-of-life-related matters (Codling et al., 2014; Ng & Li, 2003; Tuffrey-Wijne et al., 2017). Some IDD studies have focused specifically on grief and bereavement, responding to IDD staff needs for managing their grief process, and being a support to PWIDD and family members experiencing grief and bereavement (Reynolds et al., 2008; Watters et al., 2012).
Although previous research has identified certain aspects of DCWs’ palliative care experience, existing palliative care training and training needs, there have been no data that have assessed the training needs for a wide range of palliative care topics in quantitative terms, specif- ically for DCWs. Studies tend to focus on a single or a few aspects of palliative care only (Ng & Li, 2003; Ryan et al., 2010) and collect infor- mation from non-DCWs or a small sample of DCWs (Cartlidge & Read, 2010; Hahn & Cadogan, 2011; McEvoy et al., 2012; Ryan et al., 2010; Stein, 2008; Wark, Hussain, & Edwards, 2014). Many studies are pri- marily qualitative in nature (Cartlidge & Read, 2010; Fahey-McCarthy et al., 2009; McCarron et al., 2010; Ryan et al., 2011a, 2011b), and none report data on DCWs in the United States.
2 | AIMS
The purposes of the study were twofold. Primarily, we sought to as- sess a wide range of palliative care continuing education needs of DCWs from a U.S. Midwestern state using quantitative measures. Secondarily, we identified the DCWs’ preferences regarding pal- liative care training in order to develop a training programme that meets the needs and preferences of DCWs.
3 | MATERIAL S AND METHODS
Seven nonprofit community-based organisations serving people with IDD were selected through convenience sampling from rural and suburban areas of a U.S. Midwestern state. Direct care work- ers currently working with the title of “direct support professional
1 DCWs is a general term that encompasses individuals titled as direct support professionals (DSPs) or front-line supervisors in this field.
| 71GRAY And KIM
(DSP)” or who served in a supervisory or managerial position, with training as a “direct support professional” (n = 149), were recruited with flyers and letters that were distributed throughout the or- ganisations. The study was approved by the University Institutional Review Board and the participating organisations' review processes, and informed consent was obtained before participation.
3.1 | Instrument
Participants completed a self-administered survey in hard copy (79%, n = 118) or online (21%, n = 31) format. Those who wanted a paper-based survey completed the survey when the research team visited their organisation. Participants who preferred an online survey provided their email address and received a link to the online survey via email. Two organisations chose to par- ticipate in online format only. The survey consisted of three sec- tions: (a) demographic and work-related information; (b) palliative care-related information; and (c) preferred training formats. Due to the lack of quantitative survey instruments specifically for the assessment of palliative care training needs of IDD staff, the authors developed the survey by selecting topics or items from the existing palliative care and end-of-life care literature in IDD and non-IDD fields (Adriaansen, Van Achterberg, & Borm, 2005; Bekkema, de Veer, Hertogh, & Francke, 2015; Cartlidge & Read, 2010; Fahey-McCarthy et al., 2009; Gerhardt et al., 2009; Hahn & Cadogan, 2011; Hobday, Savik, Smith, & Gaugler, 2010; Kirkendall & Waldrop, 2013; McCarron et al., 2010; McEvoy et al., 2012; Ng & Li, 2003; Nochomovitz et al., 2010; Phillips, Salamonson, & Davidson, 2011; Ryan et al., 2010; Ryan et al., 2011a; Ryan et al., 2011b; Stein, 2008; Todd, 2013; Tuffrey-Wijne et al., 2007; Wark et al., 2014; Wittenberg-Lyles, Goldsmith, Ferrell, & Burchett, 2014) and the authors’ own research using focus group data from IDD staff (Gray & Kim, 2017; Kim & Gray, 2018).
3.2 | Demographic and work-related information
The survey included items about demographic and work-related information, including age, gender, residential location, race/eth- nicity, education level, job title and time in the IDD field. These items were included to identify the demographic composition of the participants and to examine whether palliative care experi- ence, previous training and perceived training needs differ by these characteristics.
3.3 | Palliative care-related information
3.3.1 | Previous palliative care experience
Experiences with palliative care were captured in 12 items with yes or no responses to a question “Have you EVER been in a situation
that involved or made you think about the following issues?” We named the count of affirmative responses to the 12 questions (rang- ing from 0 to 12) “palliative care experience score.”
3.3.2 | Previous training in palliative care
Past training in palliative care was reflected in 31 items with yes or no responses to a question “Have you EVER taken an educational course or training that teaches you the following subject matter?” The count of affirmative responses to the 31 questions (ranging from 0 to 31) was named “palliative care training score.”
3.3.3 | Perceived needs for palliative care training
Perceived needs for palliative care training was captured with 31 items using a statement “I feel the need for training on the follow- ing,” with 5-point Likert-style responses, that ranged from strongly disagree (coded 1) to strongly agree (coded 5). Summing the points (ranging from 1 to 5) of 31 questions, named “palliative care train- ing needs score,” yielded scores ranging from 31 to 155. The three scores that we named as “palliative care experience score,” “pallia- tive care training score” and “palliative care training needs score” were developed specifically for this study.
3.4 | Preferred training formats
The survey queried participants about their preference in terms of training format, length and delivery method. Internet access was also asked to explore the feasibility of online training.
3.5 | Analysis
Sample characteristics and the distribution of individual items were examined using percentages and means. Differences in sample char- acteristics and Internet access by location (rural vs. suburban) were examined using chi-square tests and t tests. Additionally, differences in main outcome scores were examined by job title, location and race using t tests and analysis of variance (ANOVA). Since the three main outcome scores were not normally distributed, both parametric and nonparametric statistical methods were used and results were com- pared. The literature recommends parametric statistical methods such as a t test and ANOVA over nonparametric methods when sam- ple sizes are moderate or large (n > 30) and skewness or kurtosis is low (Rasch & Guiard, 2004). When an ANOVA result was significant, the Scheffé pairwise comparison method (Savin, 1980) was used to identify specific pairs of categories that were statistically different from one another. The association between continuous variables, such as years in the IDD field and three main outcome scores, was examined using Pearson's correlation.
72 | GRAY And KIM
4 | RESULTS
4.1 | Participant characteristics
Table 1 provides socio-demographic information of the sample. Participants’ ages were from 22 to 68, with a mean age of 41.7. Eighty- six per cent (n = 128) of participants were female. The majority were White (60.4%), followed by Black/African American (34.2%). Whilst one-fifth had completed only high school (21.5%), about one-fourth had earned a bachelor's degree (26.2%). Just over half identified as a di- rect support professional (57.1%), 24.2% as a front-line supervisor and 18.8% as managers. Participants reported a mean number of 10.1 years working in the IDD field. There was no difference in individual charac- teristics or main outcomes by survey mode (i.e. paper-based vs. online).
4.2 | Survey results
Table 2 provides information on participants’ previous palliative care experience. The distribution of experience with palliative care varied from 40% to 80% depending on the topic or area. Less than half of the participants reported having palliative care experience related to legal matters (40.3%). More than 80% of participants indicated that they were in a situation involving coping with their own grief (86.6%) or supporting others in grief (85.2%).
Table 3 includes information on participants’ previous training and perceived needs for training. Previous palliative care training also varied widely by training topic or area. The least trained area was logistics after a client's death (30.2%). Other less-trained areas included legal matters including advance directives (35.6%) and the unique hospice care needs of PWIDD (38.3%). Meanwhile, more than two thirds of participants had training on dementia/Alzheimer's disease of PWIDD (69.8%), patterns/stages of grief (76.5%) and cop- ing with grief (73.2%).
Across all training areas, participants’ perceived needs for train- ing was quite high (70%–80%), regardless of their past training expe- rience. For example, even though 76.5% of participants had previous training in patterns/stages of grief, 73.7% of participants still ex- pressed a need for training in this area.
Table 4 shows the bivariate results regarding participants’ pallia- tive care experience, palliative care training and needs for palliative care training with respect to job title, location and race. Internal con- sistency of the items in three composite scores was acceptable with the Cronbach's alpha 0.89 from 12 items, 0.96 from 31 items and 0.98 from 31 items, respectively.
Parametric tests are robust and preferred for non-normal-de- pendent variables if sample sizes are large enough and skewness or kurtosis is low (Rasch & Guiard, 2004). Since the three outcome variables met these criteria, results from t tests and ANOVA are presented. Nonparametric tests (Wilcoxon rank-sum and Kruskal– Wallis tests) produced the same results as parametric tests. Experience with palliative care varied by job title (p < .05 in ANOVA) with DSPs reporting less palliative care experience than managers. Participants in rural areas also reported less palliative care experi- ence (p < .05 in t tests) and less palliative care training (p < .0005 in t tests) than those in suburban areas. There was a difference in past palliative care training by race (p < .0005 in ANOVA). Black/African American participants received more training than White partici- pants (p < .0005 in Scheffé pairwise comparison; results not shown in tables). Although suburban agencies had higher percentages of Blacks/African Americans than rural agencies, regression analysis in- dicated that Black/African American participants had more training than White counterparts even when the location and tenure in the field were controlled for.
Participants’ perception of palliative care training needs dif- fered by job title (p < .05 in ANOVA). Managers expressed the need for training more than DSPs (p < .05 in Scheffé pairwise compar- ison). There was no significant difference in perception of train- ing needs between managers and front-line supervisors (p > .05)
TA B L E 1 Participant characteristics (n = 149)
Number Percentage
Age 41.7 (mean) 22–68 (range)
Gender
Female 128 85.9
Male 21 14.1
Race
White 90 60.4
Black/African American 51 34.2
Other 8 5.4
Education
High school 32 21.5
Some college 54 36.2
Associate's degree 14 9.4
College 39 26.2
Graduate/professional 10 6.7
Job title
Direct support professional
85 57.1
Front-line supervisor 36 24.2
Manager 28 18.8
Geographical location
Suburban 61 40.9
Rural 88 59.1
Years working in IDD field
10.1 (mean) 1–45 (range)
Organisation
A 52 34.9
B 16 10.7
C 28 18.8
D 24 16.1
E 8 5.4
F 8 5.4
G 13 8.7
Note: IDD, intellectual and developmental disability.
| 73GRAY And KIM
or between DSPs and front-line supervisors (p > .05) (results not shown in tables).
In correlation analysis, the degree of palliative care experience (measured by the palliative care experience score) was positively correlated with that of past training (measured by the palliative care training score) as indicated by Pearson's correlation coefficient r (.42, p < .05) (results not shown in tables). Perceived palliative care training needs (measured by palliative care training needs score) was not correlated with either palliative care experience or past palliative care training.
In terms of training delivery methods, participants preferred in-person (67.6%), followed by hybrid (23.7%) and online (8.8%). Participants also preferred that case studies (57.7%), discussion (71.8%) and video (63.8%) be part of the training format, indicating the need for diverse and interactive training formats. The majority of participants (96.6%) reported having Internet access with virtually no difference by location.
5 | DISCUSSION
To our knowledge, this is the first study that quantitatively assessed the needs of palliative care training of DCWs caring for PWIDD using an instrument covering a wide range of palliative care topics and a sizable number of DCWs in the United States. Participants’ experience and training in palliative care varied widely across topic areas. Participants’ perceived needs for training was, however, quite high across all training topics/areas regardless of their past training experience. Those who have limited training are likely to recognise the need for more training and guidance in order to perform their job at a certain level of competency, and those with higher levels of training are likely to appreciate the value of training and the need
for more training, based on problems they observe from their work in the field.
Participants reported the most limited palliative care experi- ence in legal matters (e.g. advance care planning), whilst indicating more exposure to other issues such as recognising and reducing pain, and grief management. Moreover, though participants ex- pressed their desires for further palliative care training in virtually all areas, less than half of participants reported having had training in care planning and provider coordination, end-of-life care issues and cultural competence for effective communication with family members.
With respect to care planning and provider coordination, <40% of participants indicated previous training on advance directives and unique hospice care needs of PWIDD. Though DCWs are not actively involved in the advance directive process, they need to be aware of what advance directives are and be able to alert supervi- sors when PWIDD or family members want to talk about such issues. The research literature has shown that having conversations about such matters lays the bedrock for the development of good advance directives (Friedman et al., 2008; Guinn & Winston, 2018; Voss et al., 2017). Participants also acknowledged limited understanding of how hospice care needs are different for PWIDD. DCWs’ clearer under- standing of PWIDD’s unique palliative care needs can help hospice and IDD staff work together more seamlessly, if needed (Bekkema et al., 2015; Friedman et al., 2008; Voss et al., 2017).
Regarding end-of-life care, less than half of participants had training on practical aspects of end-of-life care such as how to talk about death with PWIDD, assessing and managing pain and distress of PWIDD, and what to do after a client dies. The research litera- ture has demonstrated that PWIDD have more difficulty express- ing their needs and understanding the nature of their illness due to their disabilities (Bekkema, Veer, Hertogh, & Francke, 2016; Ryan
Have you EVER been in a situation that involved or made you think about the following issues? Frequency (Yes) Percentage
Unique needs of PWIDD requiring palliative care 119 79.9
Strategies and activities that promote well-being of PWIDD requiring palliative care
124 83.2
Legal matters 60 40.3
Options for hospice care for PWIDD 80 53.7
Communication with hospice care providers or other teams involved in palliative care
86 57.7
Talking about death with family members 105 70.5
Recognising and reducing pain and distress 117 78.5
Talking about death with PWIDD 103 69.1
How to behave in the presence of a dying person 106 71.1
What to do after death of PWIDD 99 66.4
How to cope with my own grief 129 86.6
How to support other clients, family members and co- workers through the process of grief
127 85.2
Note: PWIDD, people with intellectual and developmental disabilities.
TA B L E 2 Previous palliative care experience (n = 149)
74 | GRAY And KIM
TA B L E 3 Previous training and perceived needs for training
Previous Palliative Care Training (n = 149)
Perceived Needs for Palliative Care Training (n = 148)
Frequency (Yes) Percentage Frequency (Yes) Percentage
Palliative care general
Problems of growing old for people with intellectual/developmental disability (PWIDD)
95 63.8 113 76.4
Dementia and Alzheimer's disease among PWIDD 104 69.8 113 76.4
Risks of Alzheimer's disease for PWIDD 93 62.4 110 74.3
Unique physical needs of PWIDD requiring palliative care 89 59.7 109 73.7
Unique spiritual, social and emotional needs of PWIDD requiring palliative care
81 54.4 121 81.8
Strategies and activities that promote the well-being of PWIDD requiring palliative care
97 65.1 116 78.4
Understanding and supporting PWIDD requiring palliative care who are from diverse cultural backgrounds
70 47.0 117 79.1
Care planning and provider coordination
Basic principles of palliative care 99 66.4 113 76.4
Values and choices in palliative care 88 59.1 117 79.1
Legal matters including advance directive 53 35.6 107 72.8
Palliative care planning 71 48.3 114 77.0
Organisational policies on palliative care 61 40.9 117 79.1
What should be considered in end-of-life decision-making 66 44.3 118 79.7
Options for hospice care for PWIDD 60 40.3 115 77.7
Unique hospice care needs for PWIDD 57 38.3 115 77.7
Communication with hospice care providers and other teams involved in palliative care
65 43.6 114 77.0
Family communication
How to talk about death with family members 83 55.7 114 77.0
Cultural competence to effectively communicate with family members from diverse backgrounds
61 40.9 120 81.1
End-of-Life Care
Assessment and management of pain and distress 74 49.7 114 77.0
The physical process of dying 78 52.4 112 75.7
How to talk about death with PWIDD 74 49.7 120 81.1
Appropriate behaviour in the presence of a dying person 82 55.0 112 75.7
What is a good death 53 35.6 115 77.7
Spiritual and cultural context in end-of-life issues 57 38.3 116 78.4
What to do after death: business side, logistics 45 30.2 119 80.4
Bereavement
Patterns and stages of grief 114 76.5 109 73.7
Spiritual and cultural context in grief 70 47.0 118 79.7
Rituals and closure 64 43.0 115 77.7
How to cope with grief 109 73.2 113 76.4
How to support other clients, family members and co-workers through the process of grief
98 65.8 115 78.2
How to access internal or external organisational resources to support your grief and coping process
79 53.0 117 79.1
Note: PWIDD, people with intellectual and developmental disabilities; PC, palliative care; EOL, end of life.
| 75GRAY And KIM
et al., 2011b). Staff may be uncertain as to what extent PWIDD were aware of their life-limiting conditions (Ryan et al., 2011b) and how to explain a client about his or her health condition (Tuffrey-Wijne et al., 2017), which can impede the provision of end-of-life care. This can make it difficult for staff to assist with pain management (Stein, 2008). Although DCWs have no clinical authority to help PWIDD manage pain by prescribing medications, they can help PWIDD in other ways, such as with stress management tools (deep breathing exercises, soothing music, etc.) and referring to clinicians who can prescribe pain medications.
With respect to family communication, only 41% of participants reported having training on cultural competence to effectively com- municate with family members from diverse backgrounds. Such backgrounds often are related to diverse expectations and norms re- garding religious and spiritual beliefs at end of life (Hahn & Cadogan, 2011).
Family members often play a very important role in the lives of PWIDD who have severe illness. They may have difficulty accepting the trajectory of their loved one's decline and what this may entail and often need emotional support. In some cases, a family member may prevent a PWIDD from learning about his or her illness (Ryan et al., 2011b). Additionally, family members often have valuable in- sights into the needs and care of the PWIDD, and need to convey such information to staff (Stein, 2008). Though DCWs do not have the authority to make decisions about palliative care plans, they play a critical customer service role for IDD organisations. Being that DCWs often are more readily accessible than managers, family members’ questions and concerns regarding palliative care are often initially raised with DCWs. DCWs need training so that they can speak with family members in an informed way, until management can provide a more complete response.
Though participants indicated having previous training in be- reavement, they maintained significant needs for training in these areas. Other research has found that though staff understand basic bereavement-related needs of PWIDD, they do benefit from addi- tional training, which can increase staff's level of efficacy (Reynolds et al., 2008) and knowledge (Watters et al., 2012) in providing be- reavement supports. For example, staff may overestimate the con- ceptual understanding that PWIDD have of death and not fully appreciate the behavioural difficulties that PWIDD can experience as a result of grief (Watters et al., 2012; McEvoy et al., 2012).
Participants in suburban locations demonstrated more palliative care experience and training, which highlights the need for partici- pants in rural areas to have additional training supports. Considering the heaviness of the training content areas, participants indicated that they would prefer the training to be delivered in in-person or hybrid (online and in-person combined) formats. Although online training was not the preferred delivery format, the high percentage of rural participants having Internet access in this study indicates the feasibility of online training for rural DCWs when in-person training is not available.
6 | IMPLIC ATIONS FOR PR AC TICE
This study provides useful information in order to prepare DCWs adequately in providing palliative care. Ideally, training can prioritise the topic areas most lacking in DCWs’ practical and training experi- ence, such as legal issues and logistics after death and address con- tinued concerns such as bereavement-related topics. DCWs’ interest in training formats incorporating case studies, discussion and video suggests the need for creative and engaging training models. This is
TA B L E 4 Palliative care experience, training, and training need scores: mean and standard deviation
n
Palliative Care Experience Score (n = 149) (0–12) p-value n
Palliative Care Training Score (n = 149) (0–31) p-value n
Palliative Care Training Need Score (n = 148) (31–155) p-value
Job title
DSP 85 7.7 (3.8) 85 16.4 (10.6) 85 117.1 (27.0)
Front-line supervisor 36 9.3 (3.1) 36 17.4 (9.4) 35 120 (25.4)
Manager 28 9.5 (2.7) <.05a 28 13.2 (8.7) 28 133.1 (23.8) <.05a
Location
Suburban 61 9.3 (3.1) 61 19.7 (9.4) 60 119.9 (31.2)
Rural 88 7.8 (3.7) <.05b 88 13.5 (9.7) <.0005b 88 121.4 (23.0)
Race
White 90 8.2 (3.7) 90 13.7 (9.7) 90 120.0 (25.1)
Black/African American
51 8.7 (3.4) 51 20.5 (9.2) 51 121.5 (30.1)
Other 8 9.1 (3.3) 8 14.3 (9.8) <.0005a 7 125.9 (18.5)
Note: DSP, direct support professional. aAnalysis of variance comparing score means between categories of an independent variable. bA t test comparing score means between categories of an independent variable.
76 | GRAY And KIM
in alignment with other studies showing DCWs’ preference for in- teractive continuing education delivery with more frequent, shorter sessions (Menne, Ejaz, Noelker, & Jones, 2007).
7 | LIMITATIONS AND FUTURE DIREC TIONS
Generalisability of the findings of this study is limited because the sample came from nonprofit organisations in a U.S. Midwest area, and the study used convenience sampling. DCWs’ experiences with palliative care and training and perceived training needs may vary across different types of organisations and areas in the United States. Inclusion of IDD staff who volunteered to participate in the survey may have affected the characteristics of the sample. The par- ticipants are more likely to be interested in the study topic and will- ing to express their thoughts or opinions than nonparticipants.
Using our newly developed instrument is another limitation. The three summary scores were created using questionnaire items developed specifically for this study. Due to a lack of existing in- struments that quantitatively measure the concepts that we intend to measure for our target group (DCWs serving PWIDD), a new in- strument was developed based on extensive literature reviews and our own research (Gray & Kim, 2017; Kim & Gray, 2018). Therefore, comparing our results with those from past studies or other groups is not possible.
Future research can explore ways to maximise training ef- fectiveness and work-based applications. Our exploration of the palliative care training needs of rural and suburban DCWs indi- cates a considerable gap and relative needs among rural provid- ers. Issues related to rural and suburban needs must be explored further in future research investigation. Focusing palliative care training among rural providers has promise to improve care in rural areas. In terms of measurements, validation of the instrument with more diverse and larger DCW samples and using thorough analysis methods such as factor analysis and Rasch analysis are warranted in order to develop a refined and standardised measure. Inclusion of open-ended questions in surveys or conducting qualitative in- terviews or focus groups may yield richer information on DCWs’ experiences. This can lay the groundwork for additional quantita- tive analysis.
8 | CONCLUSION
This study has demonstrated key palliative care training needs among DCWs in the IDD field. Participants reported limited ex- perience with legal matters than other aspects of palliative care. Participants expressed interest in more palliative care training over- all and were less likely to be trained in areas such as logistics after a client's death, legal matters, cultural competence for effective communication, and the spiritual and cultural context in end-of-life
care. This study highlights the palliative care training needs among a lesser-studied staff group.
ACKNOWLEDG EMENTS We are grateful for the support and assistance of our colleagues from Northern Illinois University. This study was funded by a Northern Illinois University College Tri-County Endowment grant. This study was approved by the Institutional Review Board of Northern Illinois University. The funding body has placed no re- strictions on free access to or publication of the research data. The content is solely the responsibility of the authors and does not necessarily represent the official views of Northern Illinois University. There are no author conflicts of interest related to this manuscript.
DATA AVAIL ABILIT Y S TATEMENT At this time, the research data are not shared. Please contact the authors with any concerns or questions regarding this matter.
ORCID Jennifer A. Gray https://orcid.org/0000-0001-9586-2444 Jinsook Kim https://orcid.org/0000-0001-8616-1988
R E FE R E N C E S Adriaansen, M. J., Van Achterberg, T., & Borm, G. (2005). Effects of a
postqualification course in palliative care. Journal of Advanced Nursing, 49(1), 96–103. https ://doi.org/10.1111/j.1365-2648.2004.03268.x
Bekkema, N., de Veer, A. J., Hertogh, C. M., & Francke, A. L. (2015). ‘From activating towards caring’: Shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the per- spectives of relatives, care-staff and physicians. BMC Palliative Care, 14(1), 33. https ://doi.org/10.1186/s12904-015-0030-2
Bekkema, N., de Veer, A. J., Hertogh, C. M., & Francke, A. L. (2016). Perspectives of people with mild intellectual disabilities on care relationships at the end of life: A group interview study. Palliative Medicine, 30(7), 625–633. https ://doi.org/10.1177/02692 16316 640421
Cartlidge, D., & Read, S. (2010). Exploring the needs of hospice staff supporting people with an intellectual disability: A UK perspective. International Journal of Palliative Nursing, 16(2), 93–98. https ://doi. org/10.12968/ ijpn.2010.16.2.46755
Codling, M., Knowles, J., & Vevers, A. (2014). End-of-life training for paid carers working with people with learning disabilities. British Journal of Community Nursing, 19(4), 170–176. https ://doi.org/10.12968/ bjcn.2014.19.4.170
Coppus, A. M. W. (2013). People with intellectual disability: What do we know about adulthood and life expectancy? Developmental Disabilities Research Reviews, 18(1), 6–16. https ://doi.org/10.1002/ ddrr.1123
Fahey-McCarthy, E., McCarron, M., Connaire, K., & McCallion, P. (2009). Developing an education intervention for staff supporting persons with an intellectual disability and advanced dementia. Journal of Policy and Practice in Intellectual Disabilities, 6(4), 267–275. https :// doi.org/10.1111/j.1741-1130.2009.00231.x
Friedman, S. L., Choueiri, R., & Gilmore, D. (2008). Staff car- ers' understanding of end of life care. Journal of Policy and Practice in Intellectual Disabilities, 5(1), 56–64. https ://doi. org/10.1111/j.1741-1130.2007.00142.x
| 77GRAY And KIM
Gerhardt, C. A., Grollman, J. A., Baughcum, A. E., Young-Saleme, T., Stefanik, R., & Klopfenstein, K. J. (2009). Longitudinal evaluation of a pediatric palliative care educational workshop for oncology fellows. Journal of Palliative Medicine, 12(4), 323–328. https ://doi. org/10.1089/jpm.2008.0285
Gray, J., Kim, J., & Direct care workers’ experiences of grief and needs for support (2017). Journal of applied research in intellectual disabil- ities. Special Issue on End-of-Life Care, 30(6), 995–1006. https ://doi. org/10.1089/jpm.2017.0555
Guinn, K. K., & Winston, C. R. (2018). Advance directives and individuals with disabilities. Disability and Health Journal, 11(1), 6–7. https ://doi. org/10.1016/j.dhjo.2017.05.008
Hahn, J. E., & Cadogan, M. P. (2011). Development and evalua- tion of a staff training program on palliative care for persons with intellectual and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 8(1), 42–52. https ://doi. org/10.1111/j.1741-1130.2011.00288.x
Hobday, J. V., Savik, K., Smith, S., & Gaugler, J. E. (2010). Feasibility of internet training for care staff of residents with dementia: The CARES® program. Journal of Gerontological Nursing, 36(4), 13–21. https ://doi.org/10.3928/00989 134-20100 302-01
Kim, J., & Gray, J. (2018). Palliative care experiences and needs of direct care workers. Journal of Palliative Medicine, 21(8), 1094–1099. https :// doi.org/10.1089/jpm.2017.0555
Kirkendall, A. M., & Waldrop, D. (2013). Staff perspectives on the pro- vision of end-of-life care in a community residence for older adults with developmental disabilities. Journal of Palliative Medicine, 16(9), 1121–1124. https ://doi.org/10.1089/jpm.2012.0408
Lohiya, G., Tan-Figueroa, L., & Crinella, F. M. (2003). End-of-life care for a man with developmental disabilities. The Journal of the American Board of Family Practice, 16(1), 58–62. https ://doi.org/10.3122/ jabfm.16.1.58
McCarron, M., McCallion, P., Fahey-McCarthy, E., & Connaire, K. (2010). Staff perceptions of essential prerequisites underpinning end-of-life care for persons with intellectual disability and advanced dementia. Journal of Policy and Practice in Intellectual Disabilities, 7(2), 143–152. https ://doi.org/10.1111/j.1741-1130.2010.00257.x
McEvoy, J., MacHale, R., & Tierney, E. (2012). Concept of death and perceptions of bereavement in adults with intellectual disabilities. Journal of Intellectual Disability Research, 56(2), 191–203. https ://doi. org/10.1111/j.1365-2788.2011.01456.x
Menne, H. L., Ejaz, F. K., Noelker, L. S., & Jones, J. A. (2007). Direct care workers' recommendations for training and continuing educa- tion. Gerontology & Geriatrics Education, 28(2), 91–108. https ://doi. org/10.1300/J021v 28n02_07
Ng, J., & Li, S. (2003). A survey exploring the educational needs of care prac- titioners in learning disability (LD) settings in relation to death, dying and people with learning disabilities. European Journal of Cancer Care, 12(1), 12–19. https ://doi.org/10.1046/j.1365-2354.2003.00323.x
Nochomovitz, E., Prince-Paul, M., Dolansky, M., Singer, M. E., DeGolia, P., & Frank, S. H. (2010). State tested nursing aides' provision of end- of-life care in nursing homes: Implications for quality improvement. Journal of Hospice & Palliative Nursing, 12(4), 255–262. https ://doi. org/10.1097/NJH.0b013 e3181 dfd012
Paraprofessional Healthcare Institute (2013). America's direct-care work- force. New York, NY: Paraprofessional Healthcare Institute.
Phillips, J., Salamonson, Y., & Davidson, P. M. (2011). An instrument to assess nurses’ and care assistants’ self-efficacy to provide a palliative approach to older people in residential aged care: A validation study. International Journal of Nursing Studies, 48(9), 1096–1100. https ://doi. org/10.1016/j.ijnur stu.2011.02.015
Rasch, D., & Guiard, V. (2004). The robustness of parametric statistical methods. Psychology Science, 46, 175–208.
Reynolds, S., Guerin, S., McEvoy, J., & Dodd, P. (2008). Evaluation of a bereavement training program for staff in an intellectual disabilities
service. Journal of Policy and Practice in Intellectual Disabilities, 5(1), 1–5. https ://doi.org/10.1111/j.1741-1130.2007.00132.x
Ryan, K., Guerin, S., Dodd, P., & McEvoy, J. (2011a). End-of-life care for people with intellectual disabilities: Paid carer perspectives. Journal of Applied Research in Intellectual Disabilities, 24(3), 199–207. https :// doi.org/10.1111/j.1468-3148.2010.00605.x
Ryan, K., Guerin, S., Dodd, P., & McEvoy, J. (2011b). Communication contexts about illness, death and dying for people with intellectual disabilities and life-limiting illness. Palliative & Supportive Care, 9(2), 201–208. https ://doi.org/10.1017/S1478 95151 1000137
Ryan, K., McEvoy, J., Guerin, S., & Dodd, P. (2010). An exploration of the experience, confidence and attitudes of staff to the provision of pal- liative care to people with intellectual disabilities. Palliative Medicine, 24(6), 566–572. https ://doi.org/10.1177/02692 16310 371413
Savin, N. E. (1980). The Bonferroni and the Scheffé multiple comparison procedures. The Review of Economic Studies, 47(1), 255–273. https :// doi.org/10.2307/2297112
Stein, G. L. (2008). Providing palliative care to people with intellec- tual disabilities: Services, staff knowledge, and challenges. Journal of Palliative Medicine, 11(9), 1241–1248. https ://doi.org/10.1089/ jpm.2008.0130
Todd, S. (2013). ‘Being there’: The experiences of staff in dealing with matters of dying and death in services for people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26(3), 215–230. https ://doi.org/10.1111/jar.12024
Tuffrey-Wijne, I., Hogg, J., & Curfs, L. (2007). End-of-life and palliative care for people with intellectual disabilities who have cancer or other life-limiting illness: A review of the literature and available resources. Journal of Applied Research in Intellectual Disabilities, 20(4), 331–344. https ://doi.org/10.1111/j.1468-3148.2006.00350.x
Tuffrey-Wijne, I., Rose, T., Grant, R., & Wijne, A. (2017). Communicating about death and dying: Developing training for staff working in services for people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 30(6), 1099–1110. https ://doi. org/10.1111/jar.12382
Voss, H., Vogel, A., Wagemans, A. M. A., Francke, A. L., Metsemakers, J. F. M., Courtens, A. M., & de Veer, A. J. E. (2017). Advance care planning in palliative care for people with intellectual disabilities: A systematic review. Journal of Pain and Symptom Management, 54(6), 938–960. https ://doi.org/10.1016/j.jpain symman.2017.04.016
Wark, S., Hussain, R., & Edwards, H. (2014). The training needs of staff supporting individuals ageing with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 27(3), 273–288. https :// doi.org/10.1111/jar.12087
Watters, L., McKenzie, K., & Wright, R. (2012). The impact of staff training on the knowledge of support staff in relation to bereavement and peo- ple with an intellectual disability. British Journal of Learning Disabilities, 40(3), 194–200. https ://doi.org/10.1111/j.1468-3156.2011.00693.x
Wittenberg-Lyles, E., Goldsmith, J., Ferrell, B., & Burchett, M. (2014). Assessment of an interprofessional online curriculum for palliative care communication training. Journal of Palliative Medicine, 17(4), 400–406. https ://doi.org/10.1089/jpm.2013.0270
World Health Organization (2015). Palliative care. Geneva, Switzerland: World Health Organization.
World Health Organization and the World Bank (2011). World report on disability. Geneva, Switzerland: World Health Organization Press.
How to cite this article: Gray JA, Kim J. Palliative care needs of direct care workers caring for people with intellectual and developmental disabilities. Br J Learn Disabil. 2020;48:69–77. https ://doi.org/10.1111/bld.12318
Copyright of British Journal of Learning Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.