A Palliative Care Curriculum and Training Plan for Community Health Workers

Abstract

Background:

African American patients are less likely than White patients to access palliative care. Community Health Workers (CHWs) are non-clinical public health workers that may address this gap. We developed a Palliative Care Curriculum and Training Plan for CHWs as part of an ongoing randomized controlled trial evaluating the effectiveness of a CHW palliative care intervention for African American patients with advanced cancer.

Aim:

This study aimed to determine whether the CHW Curriculum and Training Plan leads to gains in knowledge, perceived competence on CHW study-based tasks, and satisfaction among CHWs.

Design:

The curriculum was delivered over three months using synchronous, asynchronous, and experiential training components. CHWs were assessed through survey questionnaires and semi-structured interviews.

Participants:

We trained a total of three CHWs, one from each of our enrollment sites: Johns Hopkins Hospital, TidalHealth Peninsula Regional, and University of Alabama at Birmingham.

Results:

CHWs demonstrated an increase in knowledge, with a mean pre-training test score of 85% (SD 10.49) and post-training test score of 96% (SD 4.17). The training led to increases in perceived competence amongst CHWs. Areas for future training were identified.

Conclusion:

This curriculum is a template for CHW training focused on palliative care, oncology, and health disparities.

INTRODUCTION

There are persistent racial and ethnic disparities in access to and utilization of palliative and hospice care.[1–3] Palliative and hospice care have been shown to reduce physical and psychological symptoms, improve quality of life, improve end-of-life health outcomes, and ensure the delivery of goal-concordant care among patients with serious illness, including advanced cancer.[4] Despite these advantages, African American patients are less likely than White patients to access palliative care services, enroll in hospice care, have documented advanced care planning discussions with their healthcare providers, achieve adequate symptom control, and receive goal-concordant end-of-life care.[1–3]

Community health workers (CHWs) are non-clinical public health workers who provide support to patients outside of the hospital setting. In this role, they can reduce racial and ethnic health disparities by mitigating the impact of adverse social determinants of health. CHWs have been shown to improve community capacity building, access to healthcare, healthcare quality, and health outcomes among patients from ethnic and racial minority populations across a range of settings and diseases.[5] A recent study demonstrated that CHW-based interventions can improve end-of-life health outcomes among patients from high-risk communities by helping patients overcome barriers in access to palliative and hospice care.[6]

We developed a Palliative Care Curriculum and Training Plan for CHWs as part of an ongoing randomized controlled trial evaluating the effectiveness of a CHW palliative care intervention for African American patients with advanced cancer, entitled “Dissemination and Implementation of a Community Health Worker intervention for Disparities in Palliative Care: DeCIDE PC” (NCT05407844). The goal of this curriculum was to train the DeCIDE PC CHWs to provide comprehensive navigation in palliative care to African American patients with stage III or stage IV cancer. We trained a total of three CHWs, one from each of our enrollment sites: Johns Hopkins University, Tidal Health, and University of Alabama at Birmingham.

CHW Curriculum and Training Plan

The CHW Curriculum and Training Plan was created through an iterative and collaborative process, which included input from CHWs as well as experts in palliative care, oncology, patient navigation, and health disparities. The content was developed specifically for the CHW Curriculum and Training Plan, and was supplemented by curated content from reputable organizations and external sources. The curriculum uses a blended learning approach, with synchronous, asynchronous, and experiential training components. The synchronous training component was delivered over one week via video conferencing. Each session lasted 30–60 minutes and was led by study team members. These sessions included a combination of didactic and problem-based learning. The didactic component comprised sessions on the DeCIDE PC study, resource identification, interprofessional care team delivery, cancer, and palliative care. The problem-based learning sessions included role playing sessions and communication and motivational interviewing training. These immersive sessions provided the CHWs with opportunities to develop and hone their communication skills. The asynchronous training component was delivered over four weeks through a series of weekly modules, including Care Teams, Communication in Palliative Care, Patient Activation and Engagement, and Health Disparities and Religion. Each module integrated online content in the form of videos and online courses offered by the Center to Advance Palliative Care (CAPC). Each weekly module concluded with a 90-minute peer-based discussion (all three CHWs) via video conferencing to reinforce key concepts covered in that week, with the exception of week 3, which concluded with a session on advanced communication techniques. The final experiential training component entailed shadowing palliative care providers, identifying community resources, and site-specific orientation.

The objective of this study was to determine whether the CHW Curriculum and Training Plan contributed to increased knowledge, perceived competence on CHW study-based tasks, and satisfaction with the training among CHWs.

METHODS

This study was conducted for the purposes of quality improvement and program evaluation; therefore, it did not require approval from our Institutional Review Board. However, all participants provided verbal consent and agreed to have their de-identified information shared. Program evaluation included pre- and post-training questionnaires and individual semi-structured interviews with the CHWs who participated in the DeCIDE PC CHW Training Program.

Survey Questionnaires

Pre- and post-training questionnaires were used to ascertain the aforementioned study objectives. To assess knowledge gain, the survey included 24 questions (Table 1) on relevant content topics, including palliative care, hospice care, clinical and non-clinical tasks, the roles and responsibilities of the CHW, and communication and motivational interviewing strategies.

Table 1.

Pre- and Post-Training Survey Questionnaires.

Knowledge Assessment (Part 1): We would like to ask a few questions concerning your knowledge about different aspects of supporting patients, as well as palliative care. For each question, please check the box for True if you agree with the statement, or False if you do not agree with the statement.

1. Motivational interviewing draws upon open-ended questions, affirmation, reflective listening, and summarizing

2. Making an appointment with a primary care provider is a clinical task

3. Dressing a patient’s wound on their ankle is a non-clinical task

4. Suggesting chemotherapy for cancer treatment is a clinical task

5. Providing public transportation resources for a patient’s appointment is a non-clinical task

6. Palliative care is care given to improve the quality of life of patients who have serious life-threatening disease, such as cancer

7. Palliative care is an approach to care that addresses the patient’s disease

8. Some of the benefits of palliative care include reducing the risk of depression, supporting patients in decision-making, and providing emotional support for family members and caregivers

Knowledge Assessment (Part 2): For each question, please circle the correct answer(s).

1. What does HIPAA stand for? Select one answer.  a) Heath Inspector Publishing Affordability Act  b) Health Insurance Patient Affordability Association  c) Health Insurance Portability Accountability Act  d) Health Inspection Possibility Association Act

2. Which of the following is Protected Health Information? Select one answer.  a) Age  b) Name  c) Address  d) Social Security Number  e) All of the above

3. Which of the following is NOT the role of a community health worker within a healthcare team? Select all that apply.  a) Identifying clients’ barriers to care  b) Coaching throughout the behavior change process  c) Prescribing medications  d) Following-up with clients regarding treatment adherence  e) Acting as an assistant to the medical providers

4. Which of the following is the responsibility of a community health worker? Select one answer.  a) Household chores (laundry, cleaning)  b) Running errands  c) Patient education  d) All of the above

5. Motivational interviewing is associated with all the following except (Select one answer):  a) Behavior change  Primary health risk  Listening  Ambivalence

6. What are the four core skills of motivational interviewing? Select one answer.  a) Engaging, guiding, evoking, and planning  b) Open-ended questions, affirmations, reflective listening, and summarizing  c) Resistance, change talk, explore and resolve, and nurture hope and confidence

7. What are communication helpers? Select one answer.  a) Providing clarification  b) Asking open-ended questions  c) Using encouraging words  d) All of the above

8. What are the goals of palliative care? Select all that apply.  a) To prevent or treat, as early as possible, the symptoms and side effects of the disease and itstreatment  b) To treat psychological symptoms  c) To improve quality of life  d) To provide spiritual care  e) All of the above

Knowledge Assessment (Part 3): The statements below show the difference between hospice care and palliative care. Please read the statement and check the box for hospice if the statement refers to hospice care, or palliative if the statement refers to palliative care.

1. Targets the patient’s comfort with or without the presence of curative interventions

2. Focuses on comfort care without any intention of curing the patient

3. Occurs at any stage of disease or chronic illness with no life expectancy requirements to receive services

4. Prognosis of 6 months or less

5. Care is provided in conjunction with primary physician or specialists

6. Manages symptoms and helping patient/family transition with the end-of-life care

7. Physician and care team take over care

8. Manages symptoms and assists with advance care planning while receiving aggressive/invasive treatment

Competence: For the questions below, please indicate your perception of your level of ability, or competence, for various tasks. Answers range from 1 (not at all competent) to 5 (highly competent).

1. Identifying patients’ health-related social needs

2. Connecting patients to available clinic or community-based resources

3. Providing social support to patients (and their families, if needed)

4. Using patient-centered communication approaches

5. Using motivational interviewing strategies

6. Developing patient-focused care plans

7. Documenting interactions with patients in an electronic medical record system

8. Documenting interactions with patients in the study database

9. Working with clients from various ethnic/racial backgrounds

10. Working with medical providers, case managers, and other members of the care team

Level of Preparedness: For the questions below, please indicate how prepared you feel to work with the following populations. Answers range from 1 (not at all prepared) to 3 (very prepared).

1. Patients with cultures different from your own

2. Patients who belong to racial/ethnic minority populations

3. Patients whose religious beliefs or practices differ from Western medicine

4. Patients with a mistrust in the United States healthcare system

5. Patients with low socioeconomic status

6. Patients with limited health literacy

7. Patients who use alternative/complementary medicine

8. Patients with limited English proficiency

9. Patients who are new immigrants

10. Patients with limited motivation to change their behaviors

Satisfaction: For the questions below, please indicate how satisfied you feel with the various aspects of the training. Answers range from 1 (very dissatisfied) to 5 (very satisfied). Note: This component of the survey was on the Post-Training Survey Questionnaire only.

1. I had enough time to learn how to help our patients and their caregivers

2. I had enough time to practice the skills learned

3. I felt comfortable asking questions

4. The course content was relevant

5. The objectives of the training program were met

6. The combination of teaching, discussion, and practice was appropriate

7. I am confident in my ability to identify patient needs

8. I am confident in my ability to connect patients and caregivers to appropriate resources

Mean pre- and post-training test scores were compared to quantify knowledge gain. To assess perceived competence of CHW study-based tasks, the CHWs were asked to rate their competence on a scale of 1 (not at all competent) to 5 (highly competent). To assess perceived preparedness to work with patients from socially disadvantaged populations, the CHWs were asked to score their level of preparedness on a scale of 1 (not at all prepared) to 3 (very prepared). Finally, to assess satisfaction with the training, we administered a post-training survey on satisfaction with the training, which included questions related to the organization of the training, the course content, and overall satisfaction.

Semi-Structured Interviews

We conducted semi-structured individual interviews to gain insight into CHWs’ overall perceptions of the training and their experiences with the different training modalities. The interview guide was created by the study team and included open-ended questions about their experiences with the format, structure, and delivery of the training. The interviews were conducted the week following training completion and lasted approximately 30 minutes.

RESULTS

Survey Questionnaires

All knowledge test scores improved after training completion, with mean test score increasing from 85% (SD 10.49) before the training to 96% (SD 4.17) after the training. Perceived competence on CHW tasks also increased post-training. Participants’ perceived preparedness to work with patients from socially disadvantaged populations increased or stayed the same. Finally, participants were either “satisfied” or “very satisfied” with the organization and content of the training, and with the training overall.

Semi-Structured Interviews

The semi-structured interviews revealed strengths in the training program and opportunities for future improvement. All CHWs expressed satisfaction with the training overall. CHWs reported that the training was well-structured, well-organized, and covered appropriate content. Overall, the CHWs expressed confidence in the knowledge and skills that they acquired and expressed readiness to implement the study’s interventions.

DeCIDE PC CHWs expressed strong satisfaction with the format of the synchronous training component for several reasons. Chief among them were 1) the convenience of the video conferencing format, 2) the opportunity to process information covered in the training sessions through a combination of full days and half days, and 3) the interactive nature of the training sessions, particularly those that incorporated problem-based learning. There was consensus that the problem-based learning sessions facilitated increased capacity in implementing patient-centered communication and motivational interviewing strategies. Indeed, they asserted that additional problem-based learning sessions would be beneficial after they started working with patients, which would allow them to draw upon their own experiences.

The CHWs were also satisfied with the asynchronous training component. They regarded the modules as being well-organized and reported enjoying the opportunity to review asynchronous curricular content at their own pace. Furthermore, they highlighted the importance of reflecting on the content with their peers, stating that doing so reinforced key concepts while fostering co-learning by hearing other perspectives and interpretations of the content. The CHWs discussed challenges they encountered with viewing some of the videos. According to the group, they rewatched those videos to ensure that they grasped the videos’ content.

In terms of the experiential training component, the CHWs valued their experiences shadowing members of the palliative care and oncology teams. They reported that doing so helped them feel more integrated into the team. They also expressed appreciation for shadowing fellow CHWs because it deepened their understanding of the CHW role.

CONCLUSION

The CHW Curriculum and Training plan was highly regarded by all three CHWs and appears to have increased their knowledge and perceived competence to execute the tasks associated with their roles in the DeCIDE PC study. Based on their feedback, we will provide ongoing communication and motivational interviewing training throughout the trial, in order to build upon these skills.

Given the small sample size, no firm conclusions can be drawn from this study, however, the results outlined above provide preliminary data on the effectiveness and acceptability of the CHW Curriculum and Training Plan.

This curriculum serves as a template for future CHW training focused on palliative care, oncology, and health disparities. The generalizability of this curriculum extends beyond its immediate application to palliative care and oncology. The pedagogical approach and interdisciplinary nature of curriculum development can be adapted and applied to a range healthcare domains where CHW may be utilized to address health disparities. We will undertake a formal, comprehensive evaluation of its effectiveness through a pragmatic Type II hybrid-implementation effectiveness randomized trial in the future.