Enhancing the Role of Community- Health Workers in Research Martha N. Hill, lee R. Bone, Arlene M. Butz

With recognition of the importance of meeting the needs of underserved communities and the shift to more primary care-community-health workers need to be part of health teams. Community-health workers, in voluntary and salaried positions, augment the roles of professionals through outreach and community-based work and serve as liaisons between communities and institutions. This article describes the rationale for inclusion of community- health workers in research; their roles and responsibilities; and issues in their selection, training, and supervision. Examples are given from the authors’ experience with interventions by nurse and community teams. Inclusion of community-health workers enriches the comprehensiveness of a holistic scientific approach to understanding health in a community. IMAGE: JOURNAL OF NURSING SCHOLARSHIP, 1996; 28(3), 221 -226.01 996, SIGMA THETA TAU INTERNATIONAL.

[Key words: community-health worker, nursing research, community based interventions, outreach worker, paraprofessional1

n the late 1990s, increased emphasis is being placed on preventive and primary care and on the study of health promotion, particularly for poor and underserved communities. Because individual and environmental

A factors influence health and the response to illness, studies should focus on the complex inter-relationships a€€ecting health and illness in the context of individual, family, community, and culture (Maccoby, 1988; McLeroy, et al., 1993). One approach to culturally relevant research is to involve community leaders in the planning and conducting of health care and research (Levine, Becker, & Bone, (1992b); Levine et al., 1994). Another approach is to incorporate residents of the target community into research and service programs (Pew Health Professions Commission, 1993, 1994).

Since the late 1950s, service programs in the United States have been designed to meet the health needs of the poor and to extend health services to underserved communities. The federal Migrant Health Act of 1962 and the Economic Opportunity Act of 1964 stimulated expansion of local health departments and community- health centers by mandating that outreach services be provided to poor neighborhoods and migrant labor camps (Heath, 1967; Office of Economic Opportunity, 1968; Hoff, 1969). Community-based health aides were trained and employed to provide these services (Torrey, Smith, &Wise, 1973). Such indigenous workers have been used very successfully in a variety of programs, providing outreach, screening, and educational services in the following areas: referral, linking the elderly to health services (Robinson, Lund, Keller, & Cuervo, 1986; Kent & Smith, 1967); nutrition (Weingert, Larson & Friedman 1969); community mental health (D’ Augelli, Vallance, Danish, Young, & Gerdes 1981); immunization clinics (Columbo, Freeborn, Mullooly, & Bumham, 1979; Stewart & Hood, 1970); hypertension programs (Bone, Mamon, Levine, Walrath, 1989; Finnerty, Mattie, & Finnerty, 1973; Finnerty, Shay, & Himmelsbach, 1973; Mamon et al., 1989; Richter et al., 1974); cholesterol screening (Linnan et al., 1990); smoking cessation (Stillman, Bone, Becker, Rand, & Levine, 1993); breast and

cervical cancer screening (Brownstein, Cheal, Ackermann, Bassford, & Campos-Outcalt, 1992; Mamon et al., 1991); AIDS respite care (Shelp, DuBose, & Sunderland, 1990); and prenatal outreach (Meister, Warrick, Zapien, &Wood, 1992).

Evaluation of these programs varies greatly. Regrettably, in many service programs community-health workers have been introduced without the early involvement of nurses in planning, even though nurses have been frequently responsible for supervising such workers (Walt, 1988). As interest in the benefits of nurse-supervised community-based care increases (Clarke, Beddone, & Whyte 1993), research opportunities exist to examine enhancing the role of the community-health workers.

Community-health workers are integral, yet often overlooked, members of the workforce (Pew, 1994a). They are also known as helpers, lay health educators, lay health workers, community or health advocates, family health promoters, community-health advisors, neighborhood health workers, health advocates, paraprofessionals, or allied health professionals. These workers typically are members of a target population and may be residents of a target community. They may work in a disease-specific program as a peer counselor or veteran parent because of their experience with an illness or condition m y , 1993). In community- based health services, they provide screening, tracking, education, monitoring, social networking, social support, and advocacy. Martha N. Hill, RN, PhD, FAAN, Nu Beta, is Associate Professor, Arlene M. Butz, RN, ScD, Nu Beta, is Associate Professor, and l ee R. Bone, RN, MPH, i s Instructor, Schools of Hygiene & Public Health, Medicine. All are at The Johns Hopkins University School of Nursing, Baltimore, MD. Authors note that this article is based on a symposium presented at the Council of Nurse Researchers, Washington, DC, November 14, 1993. The authors’ research has been funded by the National Institute of Nursing Research; the National Heart, Lung, and Blood Institute; Marion Merrell Dow, Inc.; the JM Foundation; W.A. Baum Co. Inc.; The Maryland State Department of Health and Mental Hygiene; The Johns Hopkins Hospital; and the Maryland Health Services Cost Review Commission. Correspondence to Dr. Hill, 1830 E. Monument Street, Room 233, Baltimore, MD 21205-2100.

Accepted for Publication May 23, 1995.

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Community-Health Workers

Service and research programs using teams of nurses and community-health workers has not been evaluated well, in part because of the poor research designs to measure the effectiveness of such teams. Currently, we are conducting three NIH-funded randomized clinical trials to assess the effectiveness of community- health workers in research programs that involve nurse and community-health worker teams: The Clinical Trial of High Blood Pressure Control in Urban Young Black Males (KO8 NR00049- 03); the High Blood Pressure Control Program in an Urban African American Community (NHLBI RO1-HL 51 11 1-01); and the Community Intervention for Children with Asthma (NHLBI RO1 HL 43512-01). This article, which is based on our experience, provides a rationale for the use of community-health workers in research; describes the roles, responsibilities, and human resource issues associated with their involvement; and identifies ways to increase their effectiveness (Bone et al., 1989; Butz et al., 1994; Hill & Becker, 1995).

Rationale for Community-Health Workers In Research Community-health workers serve as cross-cultural agents and

liaisons among the community, the health care system, and academic institutions. They also enhance investigators’ access to community leaders, resources, and study populations (Bone et al., 1989; Butz et al., 1994; Hill & Becker, 1995; Levine et al., 1992a 1992b, and 1994). As members of a target community or population, community-health workers know the context in which health problems and possible solutions exist. Thus, they are able to help investigators understand the world view of the people under study (Kauffman, 1994; Salber, 1979) and the intrapersonal, intemersonal, organizational, community, cultural, and policy

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factors that affect their health. (Kaplan & Keil, 1993; McLeroy et al., 1993)

As members of the research team, community-health workers can translate cultural norms, values, practices, and goals in two directions: from the community to the investigators and from the investigators to the community. They identify factors that facilitate or obstruct research and provide feedback to the community and to the investigators. This communication helps to demystify the community for the investigators and demystify the health care system and research process for the community. With their ability to assist researchers in understanding increasingly diverse study populations, community-health workers also help investigators anticipate community response to the research. They identify creative recruitment strategies for the study population and community resources including sources of support. They suggest additional culturally relevant constructs and variables. During the study development phase, they help select instruments and design data collection forms, suggesting ways to adapt terminology to increase comprehension and cultural relevance. In the assessment of the home environment, as part of an allergy study, use of the word “trigger” prompted questions about guns, rather than questions about reasons for the start of an asthma attack. The workers also may identify irrelevant or omitted items, as well as behaviors, experiences, or conditions that might be predicted. For example, in the above mentioned study of asthma among inner city minority children, community-health workers were to ask mothers’ if they took certain actions when a child had an attack. The community-health workers pointed out that the investigators had omitted the common home remedy of having the child drink a cup of coffee for symptom relief.

In all phases of a study, community-health workers can perform functions that supplement the work of the investigators, the interventionists, and other members of the research team. They learn to carry out many of the roles of the community-health nurse such as case finding, referral, tracking, and monitoring (Hill & Becker, 1995). Community-health workers can share the commitment of the investigators to scientific inquiry and to high standards of research. They can suggest rival hypotheses, assist in explaining secular trends, and identify difficulties with interpretation. In addition, their perspective is invaluable to investigators who are examining associations among poverty, poor health, psychosocial, and biobehavioral factors contributing to socially mediated causes of illness and interventions. In summary, the inclusion of community-health workers enriches the comprehensiveness of a holistic scientific approach to understanding health in a community.

Roles of Community-HealthMrkers in Research Studies

A community-health worker can assume a variety of roles as a member of a research team. We have found that multiple roles can be filled by the same community-health worker and, with the exception of the interventionist role, cross-training of personnel is desirable. In addition, we have learned that opportunities to advance their roles, responsibilities, and salary provide important incentives for some workers to develop new skills.

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Research Assistant. In this role, a community healthworker provides administrative assistance. Responsibilities include maintaining files; cleaning, editing, and entering data; scheduling screening and follow-up appointments and home visits; abstracting medical and school records; keeping minutes of team meetings; and conducting library literature searches. In addition to adult community-health workers, high school students who are residents of the target community have been hired both during the summer and after school as research assistants.

Recruitment Coordinator. This role requires linking researchers with leaders in the target community and arranging for advertising and other publicity. Sites are identified where potential participants might be accessed, screenings are arranged and publicized. Another responsibility is to involve additional staff, such as nursing and medical student volunteers, to assist with screenings. Adherence to a recruitment protocol to determine eligibility and obtain informed consent, is also important.

Data Collector. The data collector role calls for accessing potential participants and enrolling them from a variety of settings including health care facilities and the home. Methods of data collection include medical record abstracting, interviewing, and measuring physiologic changes such as blood pressure or peak flow rates. Legibly recording complete and accurate information is a fundamental responsibility. Observations made during a home visit provide valuable information, particularly about previously unknown or unappreciated environmental conditions.

Interventionist. The interventionist role for a community- health worker focuses on implementing a specific protocol in the community setting. Intervention protocols usually include screening, tracking, referral, outreach and follow-up, education, record keeping, and supportive services. Mobilizing family members and friends of study participants’ can be worthwhile. The community-health worker’s activities are closely coordinated with those of others on the research team so as to minimize variation in delivery of an intervention.

Project Coordinator. An “advanced practice” role for community-health workers is management of day-to-day operations. A project coordinator monitors the work load and supervises research assistants and other personnel. Additionally, the coordinator arranges staff meetings, coordinates activities (including communication among study personnel and investigators), and stays in frequent contact with the principal investigator (PI).

Human Resources Issues

To recruit and retain an effective research team, the PI and study coordinator must be aware of the human resource policies of the hiring institution. In our experience, successful integration of community-health workers into the research team requires addressing the following.

Position Characteristics. The anticipated case load for a community-health worker depends on the study requirements and influences the number of worker positions needed. The investigators must determine the duration of the position, the percentage effort, payment by a stipend or a salary and at what

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amount, as well what other benefits will be offered. In creating job descriptions for salaried community-health workers, the Principal Investigator should work very closely with the human resource department so that the special needs of these employees are accommodated. For example, flex-time and health insurance may be important parts of the benefit package while other benefits such as life insurance, may be less so. From the outset, it is important to examine all possible sources of financial support because increases in salary and benefits associated with promotion of personnel may exceed the budget over time. In addition, it is helpful to have access to some discretionary funds to provide incentives to the staff, particularly when difficult parts of a project are successfully completed.

Selection Criteria and Process. The criteria for employment in our research programs include community residency, literacy, high school diploma or GED, no current substance abuse, positive references from community leaders and previous employers, and a willingness to accept the probationary period. Additional criteria in one study are having a car to facilitate making home visits and some experience with computer databases.

Community leaders can enhance the recruitment of community- health workers by advertising the positions, creating interest, and identifying potential applicants. Word of mouth, flyers, and announcements in community newspapers, church and school bulletins, and at employment centers and community events enhance recruitment.

The application process gives a candidate an opportunity to demonstrate job readiness by making and keeping appointments and providing complete and valid information on employment forms. Applicants are informed that new employees are randomly screened for substance abuse. Applications are processed by the Human Resources Office to verify validity of responses; references and criminal records are also checked. It is important for investigators to work with human resources staff to obtain information regarding exemptions to hiring policies. The applicant’s communication skills, interests, abilities, and commitment to the community, as demonstrated by prior work and volunteer experience, are all important criteria for hiring.

Preliminary screening of applicants can be done by an advisory committee composed of community leaders, specialists in job training, and the study staff, including the nurse coordinator and a veteran community-health worker. Pre-employment interviews often provide important information about appointment-keeping, punctuality, ability to maintain eye contact, and ease in meeting and interacting with people. Individual interviews to screen applicants are recommended but time-consuming. In some instances, group meetings attended by applicants, community- health workers on staff, the study nurse coordinator, and investigators may be a more efficient way to provide information about the project and positions.

It is important to clearly state the expectations of the position. Information on provisional hiring pending satisfactory completion of the training period and how workers will be selected for a particular position should be shared. In some of our projects, as a condition of hiring, community-health workers have been asked to sign a contract acknowledging their understanding of employment expectations.

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Training. The length and content of training programs varies according to project need and the experience of the trainees. Some may need training in basic work readiness such as sign-in policies and notification of absence or lateness. Training manuals, guidelines for work performance, and study protocols must be clearly presented. Investigators can present the principles of the research process and the need for strict adherence to protocols. Invited speakers who specialize in a particular field such as interviewing skills for household surveys and educational counselling can reinforce research principles and give specific examples. Decreasing didactic classroom time and maximizing interactive role playing, field demonstration, and return demonstration are the most valuable means of building skills. Incentives, such as certification for blood pressure measurement and CPR skill development, can be acquired through community or state agencies, or a trained nurse supervisor. In some projects, community college credit can be sought for successful completion of the training course. A 3-to 6-month training period, including field supervision with daily review and feedback of data recording accuracy and completeness, is recommended.

Supervision. The need for rigorous supervision cannot be overemphasized. It is important to set expectations clearly and monitor performance, particularly adherence to a study’s protocol. Frequent positive feedback is needed, along with encouragement for persistence in skill building and recognition for high-quality performance. Constructive criticism is also important. Daily debriefing sessions and review of data collection forms is critical, especially during training. Contact logs are a common method to record home visits, telephone calls, and other activities assigned to the community-health worker. Daily or biweekly review of the number, time, and nature of entries in contact logs can detect signs of poor productivity or other barriers to the health workers’ successful performance. It is important for the nurse supervisor and other investigators to accompany the community-health workers in the field periodically in order to verify that the protocol is adhered to and to understand the circumstances encountered in the community. Morale is increased by positive reinforcement and incentives such as pizza parties and celebrating workers’ birthdays and holidays. At times, negative comments such as warnings about poor performance may be warranted.

Interpersonal and administrative skills are required of the supervisor for consistent monitoring of community-health workers. Differences in life experience, work experience, work ethic, personal style, performance, and need for reinforcement can cause interpersonal problems among community-health workers. The supervisor may encounter problems such as role confusion between salaried and professional personnel, competition among workers, differences in work ethic and personal styles, and inability to work as a team. These differences can create tension among the community-health workers and between the workers and the supervisor or investigators. A mismatch of community-health worker with the role, the supervisor, or the project should be identified early and dealt with promptly and fairly. In a single instance in our experience, it was necessary to transfer a worker to another project so that worker and her competitor could develop their potential independently.

If the goal is to achieve the greatest personal growth and performance of each worker, the nurse supervisor may need to devote considerable time to early identification of these relationships and self-esteem issues and to personal development and team-building. These supervisory responsibilities also have implications for the hiring, training, and support of the supervisor. The appropriate supervisor to worker ratio varies from 1:4 to 1:8, depending on the project.

Retention. Retaining trained personnel can be problematic. Numerous and serious problems, including lack of day care and personal or family illness, compete with the project for the workers’ attention, energy, and time and can contribute to the loss of trained workers. To retain workers, a nurse supervisor is often required to help workers to address their own problems. In addition, lack of experience with prior employment and structured expectations may cause attendance and performance problems. Some workers may find that the job itself is too demanding or not what was expected. Performance expectations stated clearly during the recruiting process and training period should be repeated throughout the study. When attrition is a problem it may be necessary to recruit and train additional workers.

Capacity Building and Career Development. Another issue is the degree of institutional commitment to an individual worker. The academic institution’s commitment to the community can be an important factor in sustaining trusting relationships and building future community-based programs (Levine et al., 1994). It is important to be realistic about what, if any, job opportunities for community-health workers will exist when grant funding ends. Transfening to research projects being conducted by other investigators or to a service program may be possible; but, it is important to be honest about job security and the availability of other opportunities. Encouraging job mobility by helping community-health workers prepare resumes and counseling them about their career development should occur well before the close of a study. The creation of a senior worker role provides a stronger communication link between the workers and the nurse supervisor and also with the community leaders. Community- health workers who have made exceptional contributions have served as trainers and been included as authors of abstracts and presenters of workshops, panel discussions, and round tables at conferences. Those who are interested in further employment in the health field have been included as key personnel in submitted proposals.

Challenges The PI and other members of the investigative team should be

aware of the challenges and costs attendant to maximizing the use of community-health workers in research. These include (a) di€ferences in academic and community priorities, and (b) balancing research productivity with community-health worker performance and career development. We recommend carefully examining these challenges before deciding to use community-health workers in research projects.

Academic and Community Priorities. The difference between values placed by academic institutions on skepticism and scien- tific method and by the community on needed services and re-

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sources may lead to tension. Academic health centers typically are focused on research and emphasize discovery of new knowledge, implementation and evaluation of innovative strategies, and publi- cation of results. The community, on the other hand, is primarily focused on acquisition and allocation of resources to provide needed services they have identified. For example, in the implementation of a health promotion clinical trial to decrease asthma related mor- bidity in inner city children, the community wanted the investiga- tors to also provide dental and vision screening. Similarly, in a lon- gitudinal study on the incidence and prevalence of HTV and A I D S in a cohort of people with substance abuse, community leaders wanted the research site in the community to provide for all of the participant’s primary health care needs.

Differences exist between the rewards valued and sought by aca- demicians, community leaders, and residents. Obtaining funding for research projects and recognition of scholarly work at professional meetings and by promotion are important to academic profession- als. Obtaining access to those who allocate resources and recogni- tion of one’s leadership and contribution are important to commu- nity leaders. Even when these rewards are achieved, the develop- ment of a meaningful partnership can be handicapped by the community’s healthy skepticism concerning research. A lack of trust has developed over decades, particularly among African Americans who believe that they have been “used as guinea pigs.” Including community leaders as investigators and community residents as staff in positions in addition to community-health workers are two ap- proaches we have found helpful. The active involvement of a com- munity advisory committee in the conceptualization as well as the conduct of a study has compelled us to confront how community- based and owned our programs are and the infrastructure neces- sary if they are to be sustainable after the research funding ends.

Even when basic differences in values and rewards are recog- nized, tensions between leaders in the community and researchers in the academic institution must be dealt with. The challenge is to build trust by example and training in a climate of skepticism about research and institutions of higher education. Building trust requires flexibility, commitment, and time as well as attention to commu- nity strengths, goals, and priorities. In addition, there needs to be recognition that within communities and within academic institu- tions, there is considerable variation in the interest, commitment, and skill to make these partnerships work.

Open discussion focusing on the mutual goal of improving the communities’ health permits having greater appreciation of others’ world views. Time should be spent to educate the community about research and the importance of rigorous designs to determine the effectiveness of an intervention. Our concern that community lead- ers might not support a study because they did not understand the importance of randomization has been unfounded, with the excep- tion of a few individuals who understood the rationale but were too anxious about research in general to agree to participate. As com- munity leaders and residents have recognized the need to allocate scarce human and financial resources to programs with proven ef- ficacy and effectiveness their appreciation of the importance of re- search and evaluation has increased. Conversely, researchers should understand that a community may be skeptical about research and that its priorities are enhanced capacity and community develop- ment.

Several differences in priorities were encountered in a study to determine the feasibility of a church-based program to change eating and physical activity patterns in overweight African American women at risk for diabetes. The church was identified before submitting the proposal and the pastor participated in planning the program. He recommended a church member whom we could hire as the aerobics instructor and suggested that he ask church members to help with recruitment. Once the study began, he insisted that stipends be paid to the “volunteers.” Meeting this condition was difficult because this expense had not been budgeted. Because of our commitment to conduct the study, we took less salary and reallocated the funds for the stipends. In another study in a different church in which members were to be trained as smoking cessation interventionists, the investigators were prepared to budget stipends for those who were trained. The pastor in that church, however, did not want to have stipends paid because he was concerned that the volunteer ethic would be adversely affected.

Productivity and Performance Our experience using community-health workers in research

confirms their valuable contribution to the effectiveness of interventions delivered by nurse and community-health worker teams. By enhancing external validity, the community-health worker accelerates the integration of research findings into community practice and the potential for sustainability of effective intervention strategies. Beyond the direct contribution to research, the use of community-health workers also has important economic and social consequences. Skill-building and on-the-job training provide both employment and entry into health or other career paths. From a programmatic perspective, the importance of extensive initial and continuous training and supervision cannot be minimized. Measuring productivity is necessary for the study’s success as well as for workers’ motivation. With increased exposure to professional staff and training it may be necessary for investigators to reinforce that the value of the community-health worker is in their relationship with the community and not in their doing their work in a more clinical manner “like the nurse.” In selected situations, a worker’s position may need to be redefined to include more supervisory responsibility.

Researchers can learn about practical matters in the lives of their employees and in study participants which, if they are ignored, could prevent successful completion of the study. For example, it may first be necessary to address housing, employment, and other basic needs that may supersede the ability of the most motivated individuals to work effectively or adhere to intervention recommendations. Thus, the provision of human services on an individual basis may become part of the conduct of community- based research and the investigators may find themselves attending to the community’s priorities and needs, even if those needs are only tangentially related to the research questions.

Summary and Conclusions

From the researcher’s perspective, the benefits of using community-health workers in research are increased cultural sensitivity, increased generalizability, enhanced recruitment and

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retention, and potential cost savings. The benefits of participation in research for the community includes improved health monitoring, advisor and consultant opportunities for leaders, as well as community capacity building and economic development. The challenges include the tension between community and research institutions and the need for monitoring of productivity, performance, and adherence to protocols.

With recognition of the importance of meeting the needs of underserved communities and the shift to more primary care, community-health workers should be part of health care teams. Through community-based work, investigators stimulate funders to address pressing social issues-many of which, if prevented or decreased can result in decreased morbidity, mortality, and costs. Successful models for improved community-health will include partnerships with the community (Levine et al. 1992b, 1994), multidisciplinary approaches (Pew Health Professions Commission, 1993, 1994b), and models for public health nursing including involvement of community-health workers (Clarke et al., 1993; World Health Organization, 1987).

We have described ways to maximize the use of community- health workers. The transition from research to service still requires rigorous evaluation, for without assessment of the unique contributions of such workers, their effect on improved health status, the generalizability, and long-term cost-effectiveness may never be known. @Q

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IMAGE: Journal of Nursing Scholarship Volume 28, Number 3, Fall 1996