Toolkit for Community-engaged Wellness Mapping

Introduction

Community-engaged projects have become one of the preferred ways to build capacity, conduct research, and promote social change in a variety of fields. Our project, Health Resilience among American Indians in Arizona, began as a research initiative to identify resilience strategies used by community members in their search for a healthier life. Previous research showed the need for improving patient-provider communication in relation to wellness, health, and strategies for a healthy lifestyle; therefore, an in-depth look at patient-provider communication is also a part of the research objectives.

Our research team included community members, academic personnel, and students. We developed a Wellness Mapping toolkit to engage team members in a process of data collection and analysis in a mixed-methods project design. We used the Wellness Mapping toolkit in a variety of community settings, and with groups of people of different ages, educational backgrounds, and languages.

The use of this Wellness Mapping toolkit helped team members with varying levels of training to collaborate in a process of research and analysis. Through the use of the toolkit the team achieved data collection and provided an opportunity for capacity building among members. The authors find these tools flexible, easy to use, and easy to adapt to several endeavors, and hope the tools can be of use for other community initiatives and projects.

Approach and Methods

A Community-based Participatory Research (CBPR) approach has been the cornerstone of multiple health related projects. ^1–3 The principles of CBPR have helped shape projects where community members actively engage in research and social change, bringing their knowledge as a valuable resource to address health disparities and community-identified problems. Rapid Assessment, Response and Evaluation (RARE) ^4–7 is a community-engaged approach to collecting and analyzing data in partnership with researchers and community members that is similar to CBPR, however designed to collect data more quickly and with more defined roles for trained research engagement with community members. Researchers developed and continue to use RARE to conduct intense assessment among different groups of people who may be suffering from specific health conditions, or in communities seeking general assessments about needs and assets. The development of RARE began with the need to identify practical recommendations for impacting the spread of HIV in urban centers across the United States^4,6,7 and was later expanded internationally as I-RARE.^8–9

The RARE approach incorporates knowledgeable community members as researchers. For our project we are using the term “community researchers” to designate community members who work as non-academic co-researchers with the academic team. Community researchers receive training in RARE methodology and actively participate in data collection, analysis, and discussions about the project direction and results.

RARE provides a toolkit from which community researchers can choose and adapt the strategies that they will use for data collection and preliminary analysis. Data collection methods in the toolkit include interviews, social mapping, focus groups, and street intercept surveys. Advantages of RARE include the ability to support a shorter, intensive, data collection period by incorporating the knowledge and social networks of community researchers, as well as maintaining a community perspective in the analysis portion of the project.

The Health Resilience among American Indians in Arizona project design included the principles of collaborative research with community members and local organizations and a RARE approach to the data collection process. The project also took a resiliency approach, meaning it was geared towards identifying positive behaviors and strategies that people use to achieve and maintain health and wellness. Resilience studies are frequently framed in terms of risk and protective factors for American Indian populations;^10–12 however, more recent literature highlights the power of resilience strategies and their role in health and wellness.^{13, 14} In line with these most recent approaches to resilience, the Center for American Indian Resilience-CAIR defines resilience as:

The ability to move forward like a willow with renewed energy, with a positive outlook with attainable goals to achieve one’s dreams, and overcome negative life experiences from current and past political and historical events, with the goal to reduce health disparities among American Indians. ¹⁵

Relevance of Toolkit

In our experience, the characteristics of this toolkit make it especially successful in CBPR-RARE project structures. The authors encourage the use of the toolkit taking into consideration a locally appropriate research design and implementation. One option for the use of this toolkit is to present the tools to a group of collaborators and have them complete the mapping activity. Once the collaborators complete the activity, the group may want to discuss the usefulness of the tool for particular research questions, any modifications the group would like to make, and strategies for obtaining approval from an Institutional Review Board and recruiting and working with participants in the area of study. There are several benefits to using this toolkit within a larger mixed-methods approach. The benefits of this Wellness Mapping toolkit include:

• Time - A wellness mapping activity takes less time one-on-one than a full semi-structured interview, and may be used in groups. This shorter timeframe allows researchers to potentially conduct a greater number of wellness mapping activities than they might with full 1–2 hour interviews. The mapping activity is also easy to integrate with other research methods; for example, not only did we use the activity by itself but also in combination with interviews and surveys/questionnaires about wellness.

• Elicitation – The use of wellness maps allow for elicitation of unanticipated data. The question “tell me about what you drew here and why it is red,” may be more effective for some participants than more direct interview or survey questions. Even our group of researchers indicated surprise at the information that they presented when participating in the activity for the first time. The tool also allows researchers to connect with people who may not enjoy or feel comfortable talking about their experience and find drawing to be an easier and more participant-led activity than a focus group or interview. Since the wellness mapping is framed in an open way, participants who do not want to draw can elaborate other types or responses such as lists of words categorized by color.

• Participation and Recruitment - Requests for a 30-minute mapping activity may also result in more participation from a larger number of people. Less time involvement may also be a consideration in the distribution of incentives in projects with limited budgets. This tool also works well with people who may not share a common language or language fluency, or children who might enjoy drawing and sharing information more than talking through a focus group or interview. As mentioned before, we have used this tool in a variety of settings (community meetings, social events, interviews) proving its adaptability and efficiency. Participants who used this tool were from diverse ethnic and cultural origins, ages, and genders.

• Data collection and Analysis – This tool allows new researchers to conduct research with less training than might be involved for other research methods. While ethics and research methods are important for the use of this (and any) data collection tool or toolkit, this is easily administered with minimum training time. Analysis is also exciting for research teams who have the ability to lay out all of the maps and look at visual patterns that they see occurring in the maps as an entrée into a discussion of patterns and data analysis.

• Research Artifacts – Finally, this activity produces interesting visual objects for participants as well as researchers. With permission from participants, you may use the maps as posters, in reports, or even as symbols of a project in ways that help to communicate project goals and results.

Research Ethics

We propose the use of this tool in conjunction with ethics training and approval by an Institutional Review Board (IRB). As is the case with all social science research, researchers will be collecting data that may have deeply personal meanings attached. It is crucial for all researchers to have thoughtful training on how to handle wellness mapping when participants experience distress. Participants in our research, for example, remembered abuse and violence, and discussed places that caused stress or anxiety. In addition to the ability to work with participants to make sure they feel safe during and after the interview, researchers must also have the training necessary to hold all participant data confidential. In a case where someone reveals social data, for instance, a researcher must know the importance of confidentiality. The same is true for any information such as names or personal addresses, or health status that a participant may reveal. In one interview, a well-known neighborhood resident revealed his trips to meet with a parole officer and an oncology center where he had to go on a regular basis. These data are important and must be confidential in order to protect the identities of all participants.

We used this training in the context of a community-engaged research project with several IRB approvals: one from the university where the academic researchers are housed, one from the local hospital’s IRB, and two from Native American and tribal boards. These approvals gave our participants and researchers confidence about the rigorous nature of research procedures and data confidentiality.

Training

This set of tools is intended for use with an engaged team including at least one team member who is experienced in data collection, and most importantly, data analysis in the area of study. The toolkit contains instruments for team analysis so that researchers at all levels might use the tools to engage in the process of analyzing data in partnership with other researchers who can guide and explain data collection and analysis. Training for the use of these tools may include collaboration and discussion of overall project goals and the development of research questions, ethics, methods of data elicitation, and an introduction to analysis. These processes of collaboration and discussion were not limited to the initial phases of the project, but were a consistent part of the data collection stage allowing researchers to adjust and improve the tools as they were tested and used in the field.

We used iterative theme analysis; however, each team may choose a different strategy for analyzing your data based once again on the goals of a specific local project and the other methods you may be using in conjunction with wellness maps.

Description of Analysis

The RARE process that we used for this project was applied not only for the data collection phase of the project but also for the initial analysis phase of the findings. To facilitate the process of analyzing large amounts of quantitative data, we established a 3-level structure for the team meetings. The identified analysis levels are:

• Individual Analysis –At the first level of analysis, community researchers looked at the information and themes that a particular individual mentioned during his/her interview and recorded them as a key point list.

• Researcher Analysis – In this level of analysis, community researchers looked at all the interviews they conducted to find patterns and recurrences in the information provided by participants and observed by them. Since most of the interviews were done in teams of two, it creates an opportunity for community researchers to be aware of the different perspectives each brings to the project, and to receive feedback from each other and other team members. The template for this level of analysis was structured for our weekly meetings with a space for the community researcher to include all the key point lists from the week.

• Team Analysis - at our weekly meetings, each team member used their researcher analysis template (weekly list of key points) and shared their findings with the group. The group was able then to compare and summarize themes and key points expressed by the participants.

The use of three different templates allowed researchers to identify the information that was asked for on each analysis stage, and to separate the process into smaller, more manageable sections. One downside of these tools is that they require a learning curve during the first weeks of analysis, but once that learning process has been done the process becomes easier. These tools also require a person in charge of following up and clarifying any questions that might arise during the learning stage of the process.

Presentation of Toolkit Components

1. Wellness Mapping tool

Proposed Protocol Options for Wellness Mapping

2. Interview & mapping log (level 1 of analysis)

Interview & Mapping Log

3. Post-Interview Narrative & Memos (level 3 of analysis)

Post-Interview Narrative & Memos