Evaluation of the LIGHT Curriculum: An African American Church-Based Curriculum for Training Lay Health Workers to Support Advance Care Planning, End-of-Life Decision Making, and Care

Abstract

Background:

Lay health workers (LHWs) engaging African Americans in conversations about advance care planning (ACP) often have felt unprepared for the challenges of communicating with patients as they approach the end of life. We developed a church-based training curriculum, LIGHT (Listening, Identifying, Guiding, Helping, Translating), in response to this need.

Objectives:

To evaluate the LIGHT Curriculum by assessing its impact on knowledge, beliefs and attitudes, and self-efficacy of the learners; describing their assessment of the classroom component of the training; and describing their visit activities, and perceptions derived during client visits.

Design:

prospective, descriptive, pre- and post-training evaluation.

Settings/Subjects:

Thirty-seven LHWs (Comfort Care Supporters [CCSs]) from three African American Churches (United States). Measurements: knowledge, beliefs and attitudes, assessment of classroom training, self-efficacy, visit activities, and perceptions.

Results:

Pre-to-post knowledge scores (range 0–26) increased by a mean of 5.23, p < 0.0001. Agreement with favorable beliefs about palliative and hospice care (HC) did not change significantly post-training. Disagreement with unfavorable beliefs about hospice increased, most notably, the belief that hospice means a place where people go to die (43% to 87%, p = 0.003) and HC means giving up (77% to 93%, p = 0.03). Post-training, 94% of the CCSs felt prepared to function in their roles. The CCSs who visited clients demonstrated the ability to engage clients and families in conversations about issues important to ACP, end-of-life decision making and care, and the ability to identify relevant benefits and challenges of their roles.

Conclusions:

LHWs, trained using the LIGHT Curriculum, can acquire the knowledge and self-efficacy necessary to support African American clients with ACP, end-of-life decision making, and end-of-life care.

Introduction

Lay health workers (LHWs) have the potential to improve health care quality and health equity at the end of life.¹ When used, the roles of LHWs have varied, most often focusing on advance care planning (ACP) or advance directive conversations, or less often, focusing on symptom control, navigation, and tangible support such as transportation and housekeeping.^2–7 These roles have not anticipated the range of challenges encountered when communicating about ACP or end-of-life decision making with African Americans whose historical experiences with health care systems, insufficient knowledge about palliative care and hospice care (PCHC), and faith beliefs may cause them to view PCHC as inappropriate or inferior to care that is cure oriented^8–10; nor have the training curricula for LHWs often prepared them to support patients and family caregivers once the physical, emotional, mental, and spiritual stresses of the illness are exacerbated during the final stage of a life-limiting illness (LLI).^11,12 Consequently, some LHWs have felt unprepared for their interactions with patients or their family members and have expressed reluctance to discuss death and dying and PCHC services although these issues are paramount.^7,11,13

In response to the need to prepare LHWs serving African Americans with a LLI to be more supportive, we focused on the need to prepare LHWs for the primary role of communication facilitators. We established and implemented the Listening, Identifying, Guiding, Helping, Translating (LIGHT) Curriculum, a church-based training program for LHWs that was delivered by African American Church partners and an academic team.¹² Our goal was to educate and train a cadre of African American Church members to visit fellow congregants with LLIs, serving as a communication bridge between health professionals and clients and also as a bridge between family members. This curriculum, comprising classroom and visit components, and experiential, case-based, monthly in-person meetings, aims to: (1) impart knowledge to the learners about the dying process; the distinction between goals of care and processes of care; the meaning of ACP; the meaning and services encompassed in PCHC; the challenges of intrafamily communication; and other relevant topics; (2) influence attitudes of the learners about ACP, PCHC, and the relation of faith beliefs to end-of-life decision making; and (3) impart skills characterized by the mnemonic LIGHT: Listening, Identifying intrafamily conflicts and gaps in understanding; Guiding persons to goals of care discussions; Helping persons understand relevant aspects of PCHC, end-of-life decision making, and the concordance of PCHC with their faith beliefs; and Translating health information in plain language. In this article, we evaluate the LIGHT Curriculum Training Program by assessing its impact on knowledge, beliefs and attitudes, and self-efficacy of the LHWs, and describing their assessment of the classroom training, their visit activities, and their perceptions derived during client visits.

Materials and Methods

Selection, eligibility, and exclusion criteria of participants

The LHWs, whom we call Comfort Care Supporters (CCSs) were volunteer members of three churches with whom we collaborated.¹⁴ Each of the churches had final control over its recruitment and selection of CCSs, although each sought input from the academic team. Five principal criteria guided the selection process: (1) church membership, (2) over 30 years of age, (3) reputation as a good listener and effective communicator, (4) interest in providing support for persons with a LLI, and (5) willingness to complete all aspects of training and devote at least two hours per week to CCS activities. Persons who experienced the loss of a loved one within 12 months before the training date were ineligible because the ongoing grief experienced by these persons has the potential to impose an emotional burden, thus increasing the stress of the CCS role and potentially having an adverse effect on interactions with clients. One of the churches held interviews before selecting candidates and in the other two churches, the pastors selected the candidates. Candidates received a training binder of educational materials at the onset of training and a $250 stipend upon completing the training. The study was reviewed and approved by the University of Pennsylvania IRB #820859.

Design

Prospective, descriptive, pre and post-training evaluation.

LIGHT Training Curriculum Program

Our church-based training curriculum, which has been described in detail elsewhere, comprised three parts: classroom training, experiential, case-based monthly meetings of two hours, and field training (visits to clients with a LLI and their family or caregivers).¹² The classroom component consisted of a 26-hour intensive training experience: a 3-hour orientation session followed 1 week later by 8 modules delivered over 2.5 consecutive days (20 hours), and a 3-hour debriefing session 2 weeks later. These modules used an interactive process of small group discussions using fact-based presentations, storytelling by teachers and learners, group exercises, and role plays. CCSs organized their visit activities by the mnemonic, LIGHT, which we chose to emphasize the need for CCSs to illuminate relevant issues by effective communication. Unlike other projects, the persons served by the CCSs were not selected from clinical settings and the CCSs did not have the professional, legal, or ethical relationship with the persons served that is implied by the word “patients.”^5,7,15 Therefore, we refer to the persons and families supported by our CCSs as clients rather than as patients.

Evaluation measures

• 1.CCS attributes: self-identified gender, age, education, occupational experience, experience visiting ill church members, and duration of church membership.
• 2.Knowledge: 26 true/false items necessary for CCSs to feel comfortable communicating with clients and families. Eleven items in the general category represent beliefs about intensive treatment, family matters, advance directives, and other issues. Seven items represent distinctions between goals of care and treatment choices. Eight items require identification of members of a hospice team. The 26 items do not represent a unidimensional construct, and had a Cronbach's Coefficient alpha = 0.44, indicating low inter-item correlation. The CCSs' knowledge score was calculated as the number of correct items out of 26 items. Knowledge was assessed immediately before and post-classroom training.
• 3.Beliefs and attitudes: a 12-item questionnaire to assess beliefs and attitudes about PCHC.¹⁶ Of the 12 items, 5 were derived from the Hospice Beliefs and Attitudes Scale, a scale previously tested in African Americans.¹⁷ The other seven items were based on a review of the literature and focus group work.^8–10 All items were formulated as a five-point Likert-scale, strongly agree to strongly disagree. Beliefs and attitudes were assessed immediately before and post-classroom training.
• 4.Assessment of classroom training and self-efficacy: a five-item, Likert-scale questionnaire to examine fundamental components of successful training (e.g., clarity of objectives). Upon completion of the classroom sessions, we asked “What was good about the training and what could be improved?” Self-efficacy (sense of preparedness for their roles) was assessed by a Likert-scale item and an open-ended question—“If you do not feel better prepared, what other components or topics should be added?”
• 5.Visit activities and perceptions: (1) CCS self-report of visit activities from a predetermined checklist of 10 communication items conducted during visits with clients: prayer, listening, family member support, family dynamics, goals of care, options for end-of-life care, advance directives, translating health information in plain language, resources, and alignment of faith beliefs in relation to end-of-life care; (2) CCS perceptions about four issues: primary concerns of the client, primary concerns of the family, most significant benefit of the visits, and the most significant challenges during the visit. The checklist and the self-assessment of perceptions were gathered immediately post-visits.

Data analysis

Descriptive analyses

Frequency distributions and percentages described demographic characteristics, baseline knowledge and beliefs or attitudes, and post-training knowledge, beliefs, or attitudes.

Change in knowledge

Pre and post-training knowledge was described for each item using group percentage of correct responses, and the corresponding 95% confidence interval. Paired pre-to-post changes on each item were assessed using the McNemar test (a paired test of equal proportions). Pre-to-post increases in total knowledge score were assessed with paired t-tests.

Change in beliefs and attitudes

The CCS's beliefs and attitudes pre- and post-training were described for each item using pre or post-group percentage agreement with the favored response and its 95% confidence interval. Paired pre-to-post changes on each item were assessed using the McNemar test.

Classroom training and self-efficacy

Summary stats were used to rate the classroom experience and self-efficacy. Additional assessment was derived from a content analysis by two team members of the open-ended responses.

Exploratory gender analysis

We computed descriptive statistics (means and percentages) and effect sizes to assess (1) gender differences at baseline and after training in total knowledge score, % correct responses for knowledge items, and % favorable responses for attitude items; (2) % change from pre to post for each gender on total knowledge score, % correct responses for knowledge items, and % favorable responses for belief and attitude items; and (3) the difference in the gender pre-to-post change on total knowledge score, % correct responses for knowledge, and % favorable responses to belief and attitude items. We used a medium effect size (Cohen: h = 0.50 to 0.79, d = 0.50 to 0.79) as our threshold for the magnitude of a meaningful difference.¹⁸

Visit activities and perceptions

Self-reported activities during visits were extracted from checklists of visit reports. Perceptions of visit concerns, benefits, and challenges were extracted from open-ended text by two team members who conducted a content analysis.

All quantitative analyses were performed using SAS/STAT 14.3, SAS 9.4 ©2016, SAS Institute, Cary, NC, USA.

Results

CCS attributes

The attributes of the 37 CCSs are shown in Table 1. Most CCSs were female (81%) and most were between 51 and 70 years of age (71%). Female predominance among the CCSs is expected given the female predominance in many African American Church congregations.

Table 1.

Demographic Characteristics of Comfort Care Supporter Trainees (N = 37)

	Frequency	Percent
Gender
Male	7	19.4
Female	29	80.6
Age
31–50	4	11.4
51–70	25	71.4
71–80	6	17.1
Education
HS/GED	3	8.3
Some college	12	33.3
Bachelors (BA, AB, BS)	11	30.6
Masters, Profession, PhD, EdD	10	27.8
Employment experience
Non-health care	15	46.9
Health carea	17	53.1
Experience visiting the “sick and shut-in”
Yes	29	82.9
No	6	17.1
Years of Church membership
0.5–14	10	30.3
15–24	6	18.2
25–60	17	51.5

The number of unique participants.

^a Types of health care experience: health care administration or teaching (11), social services (3), nursing (1), occupational therapy (1), pharmacy (1).

Fifty-eight percent had at least an undergraduate degree. Slightly more than half (53%) had some employment experience in health care, mostly in administrative roles. Over 80% had previous experience visiting the sick on behalf of the church and 69% had been a church member for at least 15 years.

Curriculum evaluation

CCS participation rates

Participation rates varied according to the three components of the curriculum: (1) classroom training; (2) experiential, case-based, monthly meetings; and (3) client visits. Thirty-eight CCSs were recruited for the classroom training. Of these, 37 CCSs completed the classroom training (one drop out). One of the three churches did not establish monthly meetings, resulting in a loss of 10 CCS learners for this component of the training. Among the two churches that established monthly meetings, 2 of 27 participants dropped out. Client visits were influenced by multiple external factors and cannot be assessed as a CCS drop-out issue. These high participation rates and low drop-out rates show that learners who begin each component of the curriculum are highly likely to complete that component; whether churches commit to each of the specific components of the training process is the rate-limiting step for CCS participation.

Knowledge

The classroom component of the intervention aimed to increase knowledge based on 26 items in 3 categories shown in Table 2 and 3. Of the 11 items in the general category (Table 2), the 2 items which the CCSs most frequently answered correctly at baseline were the importance of “listening to what the client and family say” (91%) and recognizing that the client and family often have “conflicting goals of care” (94%). The item which the CCSs least frequently answered correctly pertained to the role of the surrogate; 23% incorrectly thought the role of the surrogate was “to do what the surrogate thinks is best,” rather than adhering to what the client would have wanted. Of the seven items in the goals-of-care category (Table 3), pain relief (80% correct) and comfort (97% correct) were accurately recognized as goals of care. The response with the lowest percentage correct was the failure to recognize that attending a graduation ceremony represents a goal of care (26%) and surprisingly, only 37% of the participants viewed life prolongation as a goal of care. Regarding hospice team membership (Table 3), most participants accurately identified home health aides (80%), chaplains (89%), nurses (91%), and social workers (83%) as core members of hospice teams.

Table 2.

General Knowledge: Percent Correct Responses (n = 35)

	Pretraining		Post-Training		McNemara
Items (correct response)	%	n	%	n	p
1. Shortness of breath is a common physical symptom during the dying process. (T)	60.0	21	80.0	28	0.020
2. Narcotics are commonly addictive when used in persons at the end of life. (F)	37.1	13	88.6	31	<0.001
3. Feeding tube use often prolongs life in persons with life-limiting illness. (F)	25.7	9	82.9	29	<0.001
4. Advance directives and living wills cannot be changed once they are signed. (F)	60.0	21	77.1	27	0.014
5. After a cardiac arrest in the hospital, cardiac resuscitation often leads to full restoration of function and discharge from the hospital. (F)	54.3	19	80.0	28	0.039
6. Listening to what the client and family say is as important as giving information to the patient and family. (T)	91.4	32	91.4	32	1
7. Giving fluid and food to persons while actively dying can be harmful. (T)	45.7	16	82.9	29	0.002
8. Efforts to prolong life may cause emotional and physical distress. (T)	77.1	27	97.1	34	0.008
9. Family members and the person with life-limiting illnesses often have conflicting goals of care. (T)	94.3	33	97.1	34	0.564
10. The word, “hospice” means a place for persons who are dying. (F)	45.7	16	85.7	30	0.001
11. The primary role of the surrogate is to do what the surrogate thinks is best for the person who is ill. (F)	22.9	8	45.7	16	0.001

Number who provided pre- and post-responses.

^a p-Values for McNemar's test that the paired pre- versus post-binary responses are the same.

T = True or correct answer; F = False or incorrect answer.

Table 3.

Knowledge of Goals of Care and Hospice Team Membership: Number and Percent Correct Response (n = 35)

	Pretraining		Post-training		McNemara
Items (correct response)	%	n	%	n	p
Examples of goals of care
a. Feeding tubes (F)	48.6	17	74.3	26	0.003
b. Comfort (T)	97.1	34	94.3	33	0.564
c. Relief of burden (T)	60.0	21	62.9	22	0.739
d. Chemotherapy (F)	48.6	17	71.4	25	0.021
e. Relief of pain (T)	80.0	28	80.0	28	1
f. Grandchild's graduation (T)	25.7	9	31.4	11	0.479
g. Prolonging life (T)	37.1	13	54.3	19	0.058
Identifying members of a hospice team
a. Home health aide (T)	80.0	28	82.9	29	0.739
b. Nutritionist (F)	25.7	9	68.6	24	<0.001
c. Chaplain (T)	88.6	31	100.0	35	0.125b
d. Physical therapist (F)	34.3	12	82.9	29	<0.001
e. Nurse (T)	91.4	32	94.3	33	0.564
f. Physician (T)	77.1	27	77.1	27	1
g. Occupational therapist (F)	45.7	16	88.6	31	<0.001
h. Social worker (T)	82.9	29	88.6	31	0.480

Number who provided pre- and post-tests.

^a p-Values for McNemar's test that the paired pre- versus post-binary responses are the same.

^b McNemar test and p-value computed using https://scistatcalc.blogspot.com

T = True or correct answer, F = False or incorrect answer.

Post-intervention, knowledge increased in almost all items and statistical significance was shown for many. In the general beliefs category (Table 2), the only items for which the percentage of participants with the correct answer did not increase significantly were: the relative importance of listening compared with giving information (91%) and whether family members and clients likely have conflicting goals of care (94%), but these items may have presented a ceiling effect. In the goals-of-care category (Table 3), the intervention had the desired effect of improving accuracy on the two items that are not goals of care—feeding tubes (49% vs. 74%, p = 0.003), and chemotherapy (49% vs. 71%, p = 0.021). In the hospice team identification category (Table 3), significant improvement in the percentage of participants with correct answers were shown for the three disciplines, which are not core members of hospice teams: nutritionist (26% vs. 69%, p < 0.001), physical therapist (34% vs. 83%, p < 0.001), and occupational therapist (46% vs. 89%, p < 0.001). Of the five correctly identified hospice team members, home health aide, chaplain, nurse, physician, and social worker, all answers moved in the desired direction, although improvement did not reach conventional statistical significance, likely because of the high baseline scores.

The pre-to-post changes in total knowledge scores and the distribution of scores were favorable. At baseline, the knowledge scores ranged from 8 to 20, with a mean score of 15.4. After training, the knowledge scores ranged from 15 to 26, with a mean score of 20.0. The range of the increase (improvement) of participants' pre-to-post scores was 0 to 10, with a mean increase of 5.23, p < 0.0001. Knowledge scores increased in all participants regardless how much they initially knew with the exception of three participants who showed no change (Fig. 1).

FIG. 1.

Number of correct answers pre- and post-training.

Beliefs and attitudes

At baseline, attitudes and beliefs about PCHC for which agreement is consistent with a receptive view of PCHC ranged from 66% to 97% (Table 4). Post-classroom training, most beliefs moved in a favorable direction, although not to a statistically significant degree. The most notable improvement was knowing “what palliative care is”: 66% to 100%, p = 0.002.

Table 4.

Paired Pre- versus Post-Intervention Beliefs and Attitudes About Palliative Care and Hospice Care (n = 35)

		Preagreement	Post-agreement
	N a	% [95% CI]b	% [95% CI]b	p c
I know what palliative care is.	29	65.5 [47.1–83.9]	100.0 [100.0–100.0]	0.002d
Palliative care is consistent with my faith and spiritual beliefs.	31	71.0 [54.0–87.9]	80.7 [65.9–95.4]	0.18
Palliative care can reduce suffering and bring comfort.	31	74.2 [57.9–90.5]	80.7 [65.9–95.4]	0.53
I know what Hospice is.	33	93.9 [85.4–100.0]	100.0 [100.0–100.0]	0.16d
Hospice care is consistent with my faith and spiritual beliefs.	34	85.3 [72.8–97.8]	82.4 [68.9–95.9]	0.65
Hospice care can reduce suffering and bring comfort.	34	82.4 [68.9–95.9]	76.5 [61.5–91.5]	0.56
If dying I would want HC.	31	96.8 [90.2–100.0]	93.6 [84.4–100.0]	0.56
If a loved one had a LLI, I would encourage them to learn about PCHC.	33	78.8 [64.1–93.5]	87.9 [76.1–99.6]	0.26

We combined “strongly disagree” and “disagree” into one category. A higher percent agreement represents a more receptive or favorable response toward PCHC.

Number who provided pre- and post-tests.

^a N = number of matched pairs responding to the respective question; total number of matched pre–post pairs was n = 35.

^b 95% CI represents the percentages' 95% confidence interval.

^c p Values for McNemar's test that the paired pre- versus post-binary responses are the same.

^d The McNemar test and p-value computed using scistatcalc (https://scistatcalc.blogspot.com).

HC, hospice care; LLI, life-limiting illness; PCHC, palliative care and hospice care.

Table 5 displays beliefs about hospice care (HC), which are inconsistent with a receptive view of HC and for which the desired response is disagreement. Among these items, all beliefs moved in the desired direction of increasing disagreement, most notably the belief that “hospice is a place where people go to die”: (43% to 87%, p = 0.003) and “hospice care means giving up” (77% to 93%, p = 0.03). The belief that “hospice means no treatment or care is given” did not change significantly, remaining at 77% versus 81% disagreement post-intervention. The item, “hospice care causes people to die before their time,” did not change because of a ceiling effect.

Table 5.

Paired Pre- versus Post-Intervention Impact on Unfavorable Beliefs and Attitudes About Hospice Care (n = 35)

		Predisagreement	Post-disagreement
	N a	% [95% CI]b	% [95% CI]b	p c
Hospice is a place where people go to die.	30	43.3 [24.5–62.2]	86.7 [73.8–99.6]	0.0003
Hospice care means no treatment or care is given.	31	77.4 [61.8–93.0]	80.7 [65.9–95.4]	0.71
Hospice care means giving up.	30	76.7 [60.6–92.7]	93.3 [83.9–100.0]	0.03
Hospice care causes people to die before their time.	30	96.7 [89.9–100.0]	100 [100.0–100.0]	0.32d

We combined “strongly disagree” and “disagree” into one category. A higher percent disagreement represents a more receptive or favorable response toward hospice.

Number who provided pre- and post-tests.

^a N = number of matched pairs responding to the respective question; total number of matched pre–post pairs was n = 35.

^b 95% CI represents the percentages' 95% confidence interval.

^c p-Values for McNemar's test that the paired pre- versus post-binary responses are the same.

^d The McNemar test and p-value computed using scistatcalc (https://scistatcalc.blogspot.com).

CCS assessment of classroom training and self-efficacy

In response to a brief survey (Table 6), all respondents reported that the classroom training was quite helpful or extremely helpful, and 94% reported feeling better prepared to be a CCS as an indication of self-efficacy. The only notable criticism pertained to the length of the training: 63% thought the length was about right and 31% thought the training was too short. The responses of participants to an open-ended question—“What was good about the training and what could be improved?”—was consistent with their survey responses. Participants described the training as “excellent, informative, and practical.” Most of the participants considered the role playing to be the best part of the training as reflected in the statement by one participant—“role playing is critical to ensure all participants are capable and confident in their skills.”

Table 6.

Comfort Care Supporters' Assessment of Classroom Training (n = 35)

	N	%
1. How was the length of training
1 = Too short	10	31.3
2 = Too long	2	6.3
3 = Right amount of time	20	62.5
2. Clarity of training objectives (m = 3.69, mdn = 4)a
1 = Not too clear	0	0.0
2 = Somewhat clear	0	0.0
3 = Quite clear	11	31.4
4 = Extremely clear	24	68.6
3. Did training meet your expectations (m = 1.35; mdn = 1.0)
1 = Exceed expectations	22	64.7
2 = Met my expectations	12	35.3
3 = Did not meet my expectations	0	0.0
4. How helpful was training (m = 3.60; mdn = 4)
1 = Not too helpful	0	0.0
2 = Somewhat helpful	0	0.0
3 = Quite helpful	14	40.0
4 = Extremely helpful	21	60.0
5. Do you feel better prepared to be a CCS (m = 3.40; mdn = 3)
1 = No	0	0.0
2 = Yes little better	2	5.7
3 = Yes much better	17	48.6
4 = Yes lot better	16	45.7

Number who provided pre- and post-tests for all surveys or questionnaires.

^a m = mean; mdn = median.

Visit activities and perceptions

Seven CCSs visited 12 clients among the 3 churches. The persons visited were mostly bed or chair bound, had progressive loss of function, loss of appetite and weight loss, and had diagnoses that commonly result in LLIs (cancer, heart disease, and dementia). Five CCSs (all females), who completed visit check lists, described their activities and perceptions during the visits. In addition to prayer, which was uniformly practiced, each of these CCSs engaged in empathetic listening, identified family issues, and offered family support. Three of them discussed goals of care and resource needs with clients. The five CCSs perceived the following concerns of client or family, benefits to client and family, and challenges to the CCS role.

Primary concerns of the client with an LLI

Clients (if capable of responding) lamented their change in health status (e.g., increasing pain, less active), concerns about their caregivers' “well-being,” and their desire “to stay home and not be hospitalized.”

Primary concerns of the family caregiver

Competence in their roles as caregivers, concerns about the deteriorating status of their loved ones, conflicts with other family members who would not acknowledge the likelihood of death, or who “refused to discuss goals of care or hospice.”

Benefits of clients and family caregivers: listening or “being there”; sharing faith with prayers, scripture, and communion; encouraging clients and family caregivers to share their feelings, fears, fatigue, frustration, and burdens.

Challenges of the CCS role

Balancing the needs of clients versus caregivers; managing intrafamily communications; coping with the reluctance of client and family to discuss end-of-life care options, especially hospice.

Exploratory gender analysis

We explored our quantitative and qualitative data for gender differences. We considered a difference ≥20% to be meaningful for the knowledge and attitude items and a mean difference of ≥20% to be meaningful for the % correct total knowledge scores. These differences represent a medium effect size (magnitude of the difference). Most of the gender mean and percentage differences were nonmeaningful, consistent with a small effect size. Given our sample size, we had insufficient power (β < 50) to assess a medium effect size using the appropriate statistical tests. Regarding the qualitative data, there were no gender patterns to the response to the open-ended questions about the classroom experience or the CCS self-efficacy, and the client visits were only conducted by females.

Discussion

LHWs who engage African Americans with LLIs in ACP conversations should anticipate a broad range of patient and family issues that are beyond the scope of advance directives. Since LHWs have not commonly been prepared to converse with patient and families about these broader needs, we developed and evaluated the LIGHT Curriculum. This comprehensive, African American Church-based training curriculum was designed to prepare LHWs whom we call CCSs as communication facilitators in support of end-of-life decision making and care.¹² The curriculum aimed to prepare CCSs to not only facilitate ACP conversations but to also embrace the client and family's faith beliefs and to support clients as their illnesses progressed. We found that the training significantly improved the knowledge required to communicate about end-of-life decision making and care. Beliefs and attitudes of the CCSs about PCHC did not change in a favorable direction for all items evaluated, but these were measured before the monthly case discussions, and so did not encompass the full impact of the training. Post-training, almost all of the CCSs felt prepared to function in their roles. Learners valued the form and content of the classroom experience, particularly the role-play activities and valued the feedback and peer support of the monthly case meetings. The few CCSs who visited clients demonstrated the ability to engage the clients and family in conversations about issues important to effective end-of-life communications, and the ability to identify relevant concerns, benefits, and challenges of their roles.

The competence or self-efficacy of LHWs tasked with engaging African American patients in ACP conversations or supporting them with serious illness concerns has been described in three other programs.^{3,5–7,13,15} Neither of these programs tested the knowledge of the CCSs, although insufficient knowledge may create reluctance of LHWs to engage in conversations about end-of-life issues. In one project, 24 “lay advisors,” recruited from 20 African American Churches were trained to provide peer support to persons with advanced cancer.⁷ Before training, these “lay advisors” expressed “fear of being with someone who might die, difficulty controlling emotions, and uncertainty about how to address patient and family conflicts.” Whether the lack of self-efficacy of these LHWs persisted post-training was not addressed. The concerns of the lay health advisors about their efficacy led this group to form teams of lay persons to support persons with serious illness, but the teams, unlike our CCSs, predominantly provided tangible support.³ Twenty “Care Coordinator Assistants (CCAs),” serving as community health workers in a home care program, received specialized training in ACP.^5,6 The self-efficacy of the CCAs was not measured, but the patients served by the CCAs found the visits “helpful and important.” Similar to our CCSs, these CCAs found the conversations with family members challenging and remarked on the significance of a trusting relationship as a foundation for ACP discussions. In the CCA program, trust was facilitated by the primary care relationship with the home care team, while in our program, trust was derived from the social network of the church.

Many of the challenges and perceptions of our LHWs were similar to those of 26 “lay navigators,” who were part of a lay navigator network established in 12 cancer centers in the southeast United States.^13,15 Unlike the broader role of our CCSs, the goal of these navigators was to facilitate ACP conversations. Reflecting on their experiences in the field in semistructured interviews, these navigators noted the limitations of a scripted approach to their training, the importance of a trusting relationship with clients (when possible), the challenge of helping persons whose fear of death and dying caused some patients to avoid conversations, difficulty balancing support for the family with that of the patients, and the discomfort of the navigators when initiating end-of-life conversations.¹³ Despite their challenges, these navigators improved in self-efficacy as reflected in feeling better prepared and motivated to facilitate ACP conversations. Similar to our CCSs, these navigators and others valued role plays and the need for “contextual training” to prepare them for their roles.^11,13

Our study has some limitations. The process of engaging African American Churches to participate in the process of selecting and training LHWs to visit congregants with LLIs is replicable but it requires a commitment to trust building from the church and academic partners.¹⁴ The CCSs represented a select group of persons who were mostly female, a gender distribution consistent with most African American Churches. This selection bias for CCS candidates is expected since the CCS role is not one that all church members are willing or capable of undertaking. The study had no control group with which to compare changes in pre-to-post training, but a control group would have limited the interest of some churches to participate. The general items on the knowledge questionnaire were chosen because of their face validity and relevance to end-of-life decision making in general, and to some of the beliefs held by African Americans.^10,19 Post-intervention knowledge was measured only once; repeated measures would have strengthened the analysis. We measured self-efficacy post-training by a single quantitative item and an open-ended question, rather than by a multiitem tool. Multiitem tools have not been used for individuals in the roles of our CCSs, and our self-efficacy quantitative item is similar to the question used in another study of LHWs.¹⁵ While the overall perception of the classroom training derives from 95% of the study group, the visit experience and perceptions data derived from only five participants due to barriers to patient visits. Nevertheless, these visit perceptions are consistent with the findings of other studies.

Conclusions

LHWs, trained as communication-facilitator specialists using the LIGHT Curriculum as part of an African American Church-based partnership, can acquire the knowledge and self-efficacy to support ACP, end-of-life decision making, and care in clients with LLIs. Whether this curriculum fully prepares learners with the skills necessary to meet all the aims of the curriculum requires further research on the client and CCS interactions.

Authors' Contributions

All authors participated in writing, reviewing, and revising the article.

Funding Information

This work was supported by the Health Resources and Services Administration [grant U1QHP28720]; the National Institutes of Health, National Institutes of Aging [grant NIH/NIA R21-AG-044677].

Author Disclosure Statement

No competing financial interests exist.