Using the Community Readiness Model to Assess American Indian Communities Readiness to Address Cancer Prevention and Control Programs

Abstract

Cancer disparities continue among American Indian and Alaska Native (AI/AN) populations while they have decreased among other racial and ethnic groups. No studies were found that utilized the Community Readiness Model (CRM) to ascertain the readiness of Tribal and American Indian organizations to participate in cancer research and cancer prevention and control initiatives. The Partnership for Native American Cancer Prevention conducted an assessment of the status of American Indian communities’ readiness to implement activities for prevention, early detection, and treatment to improve AI/AN cancer rates. The assessment was a component of the Community Outreach Core of the grant. Thirty-four key Informants participated in the interview process. The Community Readiness Assessment (CRA) provided a baseline assessment of community partners’ readiness to participate in cancer research and programming. Despite years of cancer intervention programs, the communities were classified as being in the early stages of readiness [1–5] of the nine-stage model. Additionally, findings showed low levels of awareness of previous or ongoing cancer research. The findings in prevention and control efforts indicated a need for technical assistance and funding to support community projects in prevention and control. This supported the implementation of a community grants initiative. They also indicated that communities were not ready to conduct research, despite ongoing cancer related research in at least two communities. Communication tools and social media methods and messages were developed to increase awareness of cancer as a health concern and cancer research in the community. The CRM informed these and other engagement activities to meet the appropriate stage of readiness for each Tribe/community, and to build their capacity to participate in cancer research and programming activities.

Introduction

American Indians and Alaska Natives (AI/AN) face unique cancer health disparities. Although cancer death rates continue to decrease in the USA for the most common cancers (lung, prostate, colorectal, breast) among men and women of all racial and ethnic groups, incidence and death increased for lung cancer and colorectal cancer among AI/AN men and women [9]. Many of the cancer health disparities experienced by AI/AN in the Southwest are due to late stage diagnosis, limited access to care, and other issues that could be addressed through secondary and tertiary prevention efforts [16]. These disparities underscore the need for the application of new strategies for prevention, early detection, and treatment for AI/AN populations.

A number of research studies conducted for AI/AN focused on increasing the cancer screening rates and assessing the effectiveness of cancer prevention health programming [3, 14, 17]. These results indicated that cancer screenings were lower among AI/AN than their Non-Hispanic White (NHW) counterparts and that there is a need to improve cancer screening methods requiring overcoming barriers [14, 17]. Dockery et al. [3] found that patient navigation services did not positively impact treatment outcomes of AI cervical cancer patients more than with patients who did not receive patient navigation.

Although geographic isolation, cultural attitudes, language, and lack of resources are specific challenges to providing health services to AI/AN communities, full support, and “ownership” of the interventions by the tribes, in conjunction with ongoing and close collaboration between tribal and state programs, as well as their local partners make sustainable improvements in reducing cancer health disparities achievable [5]. Brown et al. [1] showed that implementation of a Tribal-run CDC Breast and Cervical Cancer Program (BCCP) resulted in a substantial increase in mammography screening. While behavior modification models focused on the individual are important, multi-level, socio-ecological interventions that combine individual, environmental, and policy level action are needed to achieve substantial positive changes in population health [8, 13].

The Partnership for Native American Cancer Prevention (NACP) is a National Cancer Institute (NCI) funded partnership between the University of Arizona Cancer Center (UACC) and Northern Arizona University (NAU) to reduce cancer health disparities among American Indians in Arizona that began in 2002. In earlier years (2002–2014), the primary focus of the NACP Outreach Core was to develop sustainable education programs and research for cancer prevention that met the unique needs of the community through grant funded community health educators working with three tribal partners. The goal was to strengthen collaboration between NAU and UACC and their Tribal partners to increase cancer prevention and cancer control activities and training for health professionals and ultimately increase the number of Native Americans receiving cancer screening.

The efforts to increase cancer awareness and screening appeared to be successful but had never been measured. In 2014, the Outreach Core pivoted their strategy to draw upon the strengths of the partnership to elevate Tribal capacity to implement Tribal/community-driven cancer prevention and control programs and research. The aim was to develop sustainable programs within the Tribes and communities with their current resources, and to utilize grant funds to expand to other communities. However, each Tribe/community program operated in distinct ways and at different socio-ecological levels of intervention. To determine an appropriate strategy to benefit each Tribe it was necessary to ascertain where each was in their level of readiness to adopt and implement cancer prevention and control programs and cancer research.

In addition, Arizona Tribes are particularly sensitive to research. In 2004, the Havasupai Tribe filed a lawsuit against the Arizona Board of Regents (ABOR) for research violations [7]. Many Tribes reacted by placing moratoriums on research until they could create and put in place protection protocols/systems and agreements for data collection and management with an understanding that data is the property of the Tribes. While there are robust research programs in some Tribal communities, there is great variability among the groups. Therefore, to understand what activities communities were prepared to implement, and determine a baseline measurement of levels of readiness for cancer program intervention and cancer research, a community readiness assessment (CRA) was conducted using a slightly modified version of the Community Readiness Model (CRM) [18]. The stages of readiness defined in the CRM include the following: (1) no awareness; (2) denial or resistance; (3) vague awareness; (4) preplanning; (5) preparation; (6) initiation; (7) stabilization; (8) expansion and confirmation; and (9) community ownership. The stages are further described in Table 1. A systematic review found that although the community readiness tool was used in 40 projects focusing on fourteen different health and social issues including cancer [12], none of those projects included both Native Americans and cancer.

Table 1.

Description of the stages of readiness for cancer programs/research

Stages of readiness	Description
1. No awareness	Cancer is not generally recognized by the community or leaders as a problem (or it may truly not be an issue).
2. Denial/resistance	At least some community members recognize that cancer is a concern, but there is little recognition that it might be occurring locally.
3. Vague awareness	Most feel that there is local concern, but there is no immediate motivation to do anything about it.
4. Preplanning	There is clear recognition that something must be done, and there may even be a group addressing it. However, efforts are not focused or detailed.
5. Preparation	Active leaders begin planning in earnest. Community offers modest support of efforts.
6. Initiation	Enough information is available to justify efforts. Activities are underway.
7. Stabilization	Activities are support by administrators or community decision makers. Staff are trained and experienced.
8. Confirmation/expansion	Efforts are in place. Community members feel comfortable using services, and they support expansions. Local data are regularly obtained.
9. Community ownership	Detailed and sophisticated knowledge exists about cancer prevalence and consequences. Effective evaluation guides new directions. Model is applied to other issues.

Adapted from original source: Edwards RW, Jumper-Thurman, P, Plested, BA, Oetting, ER, and Swanson L. (2000)

Methods/Process

The Community Readiness Model

The Community Readiness Model (CRM) was developed by researchers at the Tri-Ethnic Center for Prevention Research at Colorado State University [18]. The CRM was developed to help communities be more successful in their efforts to address a variety of health issues. It is based upon the Transtheoretical Model of Individual Stages of Change [19] and incorporates theories of community-level processes and social action to measure progress along a continuum from absence of awareness to a high level of community ownership [18]. The model assesses community readiness through a qualitative interview process with key informants from different areas of the community (e.g., healthcare providers, Tribal leaders, community health workers).

The stages of readiness help identify a community’s weaknesses and strengths, obstacles that will likely be encountered, and point to actions that match a community’s readiness to move forward. Details about the CRM can be found in the Community Readiness Handbook [15].

Each interview was transcribed, and two team members read and scored the interviews independently using the rating scales in the CRM Handbook [15]. The rating scale includes five dimensions: (1) community knowledge of efforts, (2) leadership, (3) community climate, (4), community knowledge of the issue, (5) resources to support efforts. The dimensions consider various aspects that help guide the community in moving their readiness levels forward. Each dimension was rated, using a scale from 1 to 9, to indicate the level of readiness. Once the scoring was completed for each interview, the two scorers met to come to consensus on individual dimension scores. Dimension scores were then averaged across the total number of interviews conducted with each community to reveal each community’s readiness to implement cancer programming and cancer research along the nine stages of readiness described in Table 1.

Questionnaire Development

Some scales related to the five dimensions of community readiness [15] were modified to provide consistency using the response set “nothing, a little, some, or a lot.” Previous experience indicated that AI/AN participants did not distinguish a difference between the terms “many” and “most.” The interview protocol was tested with American Indian colleagues and family members to validate the efficacy of the questions and response set. For example, for the original question, “About how many community members are aware of each of the following aspects of the efforts – none, a few, some, many, or most?” the response set was modified to – “none, a few, some, or a lot?”

Key Informant Interviews

The NACP Outreach Core was guided by a Community Action Committee (CAC) along with staff identified potential key informants from four communities that included community health representatives, cancer patients/survivors, caregivers, and tribal health and government leaders. Due to the length of the conversations, some participants completed both interviews in 1 day, while others were conducted on two separate days. Following the guidance in the CRM handbook (Oetting et al.) and standard qualitative interviewing procedures [6], interviews followed cultural protocols and respected each KI availability and format for the interview. Interviews took about 1.5 h to complete for each topic, 3 h total. Interviews were conducted either by phone or in person and either in English or a native language if preferred. Thirty-four key informants (KI) were interviewed from four communities. Native speaker team members back translated interviews conducted in a native language into English. The interviews were digitally recorded and the transcription software, Express Scribe, was used which required about eight hours for each interview.

Scoring the Interviews

Team-based coding/scoring was utilized to ensure inter-coder reliability. The interviews were scored using the scoring sheet provided in the CRM handbook [15]. Each dimension of the questionnaire had its own scoring sheet. The time it took to score each interview varied from 30 min to 1 h. After each interview was scored individually, two coders met to discuss the scores given, discuss discrepancies, and come to a consensus score. The dimension scores were added and averaged to determine the aggregate level of readiness across the interviews.

Results

Readiness to Adopt Cancer Programs in Four Communities (Fig. 1)

Fig. 1.

Community readiness for cancer programming. The numbers are rounded .5 rounded up to the nearest whole number; .4 rounded down nearest whole number

The CRM handbook [15] utilizes a scale to describe levels of readiness with numbers ranging from one to nine with verbal anchors. Table 2 displays the scores across the four communities related to readiness for cancer programming. Each of the communities had some type of already occurring cancer prevention and control programming, though levels of activity and years of experience with cancer programming varied.

Table 2.

Community readiness scores for cancer programs for each dimension

Dimensions	Average community score*				Aggregate score
	1	2	3	4		Range: level of readiness
Knowledge of efforts	6.50	4.58	3.25	2.00	4.08	Denial/resistance—initiation
Leadership	6.83	4.00	3.30	3.33	4.37	Vague awareness—initiation
Community climate	5.00	3.75	3.35	3.17	3.82	Vague awareness—preparation
Knowledge of the issue	4.00	3.54	3.10	3.83	3.62	Vague awareness—preplanning
Resources	4.67	4.04	2.80	2.33	3.46	Vague awareness—preplanning
All dimensions	5.4	3.982	3.16	2.932	3.87	Vague awareness—preplanning

^*Scale ranges from 1 to 9 (lowest to highest)

Two communities (2 and 3) were in the vague awareness stage (most feeling that there was a local concern but there’s no immediate motivation to do anything about it); community 1 was in the preparation stage (active leaders were planning in earnest/community offered modest support of efforts); community 4 (see Table 2) was in the denial/resistance stage (where some community members recognize that cancer is a concern, but there is little recognition that it may be occurring locally). In community 1, there was a high level of readiness, indicating that some community members were participating in developing, improving, or implementing efforts. For example, the following quote was scored as being at the preparation stage.

“The current education specialists have gone and done booths and people didn’t even know that there was a cancer program on the Nation. So, a lot of the efforts are behind the scenes, kind of more, big picture kind of things that aren’t really out in community, so it’s not really known”.

The preparation stage indicates that most community members know about local efforts, leadership is actively supportive of continuing or improving current efforts. The key characteristic of preparation depicted in the quote below is, some resources are identified, and community members and/or leadership are actively working to secure additional resources. The quote below emphasizes how the community organization is aware of numerous resources to enhance cancer care for their community.

“Our efforts are the actual screening that takes place, having resources available here on the community level that enables them to access community health care and the other reference is through our partnerships with medical providers in the area like IHS 638 program, … private providers through the medical center and the cancer center, there all of those make a difference and increase the resources that we can use to make good [decisions] about our messages about cancer and screening efforts and methods to treat it.”

The leadership’s knowledge about cancer varies from vague awareness to preplanning. Indicating that some community leadership believe cancer is an issue but is not seen as a priority or only a few people in leadership are participating in developing improving or implementing efforts.

There are similarities occurring in the community attitude toward cancer. Community members may believe cancer is a concern, but it is not seen as a priority. There are some community members participating in developing, improving, or implementing efforts. In many of the interviews, it was mentioned that cancer does not become a priority to community members until it directly affects them, or someone close to them.

“My sense is that unless there [is] someone who has cancer or a family member who’s close to you or they have cancer themselves, there’s generally no interest in cancer prevention.”

The community’s knowledge about cancer was minimal. There were at least some community members who have heard of cancer, but had limited knowledge about it. Some community members knew a little about the causes, consequences, signs, and symptoms of cancer.

Among the four communities who participated in the assessment, knowledge about cancer resources ranged between denial/resistance and preplanning. There are limited resources for cancer in communities and some community members or leaders have looked into or are looking to using those resources to address cancer. Resources could include funding, personnel, transportation, or other essentials.

“I think the programs are really tight on the resources. So if the director’s writing [a] proposal, … they’re just really maintaining the current funding and I haven’t quite heard of anybody expanding like you know innovative programs … such as breast and cervical cancer to look for other resources specific to cancer.”

Readiness to Adopt Cancer Research Programming in Four Communities (Fig. 2)

Fig. 2.

Community readiness for cancer research. The numbers are rounded .5 rounded up to the nearest whole number; .4 rounded down nearest whole number

The CRM is “very issue specific” and therefore the same methods were used to collect responses regarding research. Table 3 displays the aggregate scores across the communities regarding cancer research. Each of the communities had some cancer research occurring. However, the community’s knowledge of such research ranged from no awareness to vague awareness. While in some communities there was some awareness, Denial/resistance with community members expressing fears about research due to past transgressions was also reported. The following quotes are examples of this attitude.

“I think some people have misconceptions or incorrect information and I think it goes back to the past research done on Native Americans. In the past some people have knowledge of that especially with the diabetic population and Havasupai that that type of research that happened as a result of that.”

“A lot of it has to do with taboo. That if you speak about cancer, you are allowing it to mentally and psychologically disturb an individual. And also you are inviting it [cancer] in … that you are causing it to enter your body as well as bring it into your home.”

Table 3.

Community readiness scores for cancer research for each dimension

Dimensions	Average community score*				Aggregate score
	1	2	3	4		Range: level of readiness
Knowledge of efforts	3.25	2.63	2.25	1.75	2.47	No awareness—vague awareness
Leadership	3.88	3.63	3.63	3.00	3.53	Vague awareness
Community climate	4.00	3.5	3.46	3.00	3.49	Vague awareness—pre-planning
Knowledge of the issue	2.88	2.38	2.54	2.50	2.58	Denial/resistance
Resources	2.63	3.81	2.88	1.25	2.64	No awareness—vague awareness
All dimensions	3.328	3.19	2.952	2.3	2.94	Vague awareness

^*Scale ranges from 1 to 9 (lowest to highest)

All four communities indicated that community leadership had a vague awareness regarding cancer research, indicating some concern, but that it was not seen as a priority on which to act.

“I don’t think it’s a concern [among leadership] until it becomes a concern and that’s just the function of the government, is it reacts to certain things…”

Community climate had the highest scores indicating movement by some members of the community to see cancer as a concern and that some type of effort was needed to address it. Although some may have been at least passively supportive of efforts, a few others reported participating in developing, improving, or implementing efforts to engage in cancer research. For example, “…breast and cervical cancer control …they’ve made some effort in that area to expand their services to more women and more individuals.”

All four communities ranked at the denial/resistance stage for knowledge of the issue. Only a few community members were seen as being knowledgeable about the cancer research occurring in their community.

“I would say their knowledge is pretty low around cancer research. Because it’s not publicly available to them. It’s not something that we deal with every day. It’s not like on the corner section of the [local newspaper] where people can be aware of it. And it’s not in the media that is widely distributed and, or on the radio or just an everyday thinking, like conversation. It’s not normative in that sense.”

Scores for resources also ranged across the lower third of the scale, indicating limited resources across communities to support research efforts and no action to allocate resources for such efforts.

Discussion

The CRA provided a baseline dataset for each community in regard to community readiness for cancer prevention and education programming and cancer research. The stages of readiness defined in the CRA include the following: (1) no awareness; (2) denial or resistance; (3) vague awareness; (4) preplanning; (5) preparation; (6) initiation; (7) stabilization; (8) expansion and confirmation; and (9) community ownership. The aggregate findings suggest the communities were generally ready to begin to develop sustainable activities for cancer prevention and control. One community had a much higher level of engagement and considered their population highly aware and involved in their cancer program efforts.

However, there was no indication that the communities were ready to conduct research; some were in the earliest stages (denial and resistance) and readiness ranged from no awareness to pre-planning.

Readiness to Engage in Cancer Research and Prevention and Education

According to the community readiness assessment findings, none of the participating communities indicated they were ready for research (in 2017) despite the fact that at least two were currently participating in research projects or had been previously.

The findings in prevention and control efforts corresponded directly with the types of requests for cancer programs received from the Community Action Committee (CAC) including requests for technical assistance, and funding to support community projects in prevention and control. In 2017, the CAC reviewed proposals to the NACP Research Development Core to inform the selection process and identify areas for research important to tribal communities in Arizona and ensure cultural acceptability. The areas identified by the CAC were consistent with CRA findings for readiness for cancer research because they were focused on the pre-planning activities. The CAC recommendations, included (1) the incorporation of family and community support in cancer treatment and healing processes; (2) cancer prevention efforts; (3) provider cultural competency, including respectful cross-cultural communication and relationship building with AI/AN patients; (4) development of programs that blend traditional and western medicine; (5) addressing barriers to treatment and recovery for patients living on reservation as well as those living off the reservation; and (6) the development of policy focused research that would close the gap between community needs and academic research.

As part of the CRM process, a strategic planning workshop was held to provide feedback to community partners and to build community capacity to develop strategic plans using the assessment findings. A take-home strategic planning toolkit was provided to inspire and inform an ongoing process. A 3-month follow-up was conducted with the attendees by the evaluation team. Of the 13 participants, 91% reported the strategic planning workshop as beneficial and two of the four communities used the toolkit to develop a strategic cancer plan. One community group used the information to develop a proposal for pilot funds for an evaluation of their cancer screening program. These two communities used the CRA and strategic planning data to apply for (and received) federal funding to support their breast and cervical cancer program.

In response to community requests, the outreach conducted technical assistance with communities upon request including: reviewing and commenting on a Tribal epidemiological cancer report; developing a Tribe-specific cancer patient navigation program; supporting, planning and facilitating Tribal health summits; planning of a Survivorship Conference; and technical grant writing assistance for a Breast and Cervical Cancer Prevention grant renewal.

Conclusions

The Community Readiness Model has been used to assess public health initiatives in HIV/AIDs, and drug and alcohol abuse [4, 11]. In those contexts, it has been found to be a valid and reliable assessment tool with communities [4]. The Community Readiness Assessment provided a baseline assessment for Native American community partners regarding their cancer prevention and control activities, and their readiness to participate in cancer research. In addition, it provided important information for the Outreach Core regarding the kind of technical assistance needed. Disseminating results to community partners through strategic planning training and providing a take home toolkit, developed community capacity not only in cancer, but also other public health planning initiatives.

The CRM [2] recommends focusing on strategies that increase the community’s readiness on those dimensions with lower scores first. For our communities, the lowest scores for cancer programs were in knowledge of cancer and resources both indicating vague awareness. In this stage, people recognize that cancer is a problem, but have to be aware that the community can do something about it. Some communities, though, were in the pre-planning stage in at least three of the dimensions. At this stage, people are ready to start thinking about how to address the issue. For cancer research, communities ranked both knowledge of efforts and resources as “no awareness.”

The Outreach core implemented several strategies to increase the visibility of cancer as a health disparity issue for AI/AN and awareness of research activities. A social media presence was developed to disseminate culturally relevant information on cancer prevention and control and cancer research activities by creating content on Facebook, YouTube, a webpage and 3-min health videos. The Facebook presence grew to 2048 followers with the largest viewing being a video of making blue corn mush, which received 25,000 views.

Another strategy included the development of a newsletter, which was disseminated both in print and through social media. The newsletter told the story of a cancer survivor and shared a story of a current cancer research project in one of the communities. Also, as part of the Outreach program’s community grants initiative, a program to refer a friend was supported to increase mammography screening rates in one community and funded a media campaign in a different community. Another community grant project included one community’s cancer report that was disseminated to tribal leaders and the community at large. A volunteer speaker’s bureau was developed and over 60 individuals trained on public speaking and on key cancer topics including colorectal cancer screening. Table 4 lists the recommended strategies for communities at each stage and the activities NACP conducted to facilitate movement of cancer programming to a more robust stage.

Table 4.

CRM recommended strategies and NACP activities conducted to increase readiness

Stage	Recommended activities	NACP activities conducted
Vague awareness	Presenting information at local community events and to community groups; Posting flyers, posters, and billboards; Hosting their own events (potlucks, etc.) to present information; Conducting informal surveys and interviews with community members; Publishing newspaper editorials and articles with general information and local implications.	Social media presence on Facebook, YouTube, and Webpage Created culturally relevant 3-min health videos Disseminated information on cancer prevention and control and research Disseminated Outreach Newsletter Published community cancer data report
Pre-planning	Using presentations and media; Visiting and investing community leaders in the cause; Increasing media exposure through radio and television public service announcements.	Developed cancer talks and trained volunteer speaker’s bureau Developed patient navigation program and trained CHRs
Preparation	Making one-on-one contacts with community leaders/members; Visiting existing and established small groups to inform them of cancer research in their communities; Making one-on-one phone calls to friends and potential supporters; Placing items in the media that explain or call attention to cancer research.	Conducted strategic planning workshop and provided a take home toolkit Refer a Friend breast and cervical screening program

Source for recommended activities: Plested, B. A., Edwards, R. W., and Jumper-Thurman, P. (2006). Community readiness: A handbook for successful change. Tri-Ethnic Center for Prevention Research, Colorado State University

The CRM was useful in establishing a baseline assessment in a complex health concern like cancer, and in assessing readiness to conduct cancer research. However, the model was both time and resource intensive and did not facilitate a rapid assessment. Interviews were difficult to schedule but created a large rich data source that slowed analyses. In an obesity study, Jernigan et al. [10] used the model to guide the development of a survey, indicating that a survey may be more useful for complex health issues such as cancer prevention and control and the broad range of cancer research. Providing tools and building community capacity in partnership with community members is essential in ensuring the long-term success and institutionalization of cancer programs and for continued community level research. Conducting a community readiness assessment provided the partnership with information to guide outreach efforts and adding the strategic planning process provided those tools and subsequent capacity enhancement.