L o n g - N e g le c te d Is s u e s Journal o f Empirical Research on

C om m u nity-E n gag ed Research: C an cer Survivors as C o m m u n ity Researchers

Human Research Ethics 2014, V ol. 9(3) 7 4-78 © The A u th o r(s ) 2 0 14 Reprints and permissions: sagepub.com/journalsPermissions.nav D O I: 10.1177/1556264614540598 jre.sagepub.com

(g)SAGE M aghboeba M osavel 1 and K im b erly D. Sanders 2

A b s tra c t

T h e personal re w a rd s and challenges e xp e rie n ce d by c o m m u n ity researchers are n o t w e ll e x p lo re d . T ra in in g laypersons to be engaged in som e o r all aspects o f com m unity-engaged research is b ecom ing m o re c o m m o n , highlighting th e need to u nd ersta nd th e challenges associated w ith th is ro le . T he c o m p le x itie s o f this ro le are m agnified w he n th e layperson has m u ltip le id e n titie s o f o v e rla p w ith th e research p a rticip a n t. In this b rie f re p o rt, w e e x p lo re th e re w a rd s and challenges re p o rte d by 8 cancer su rv iv o rs and 2 cancer caregivers w h o co n d u cte d in te rv ie w s w ith 32 o th e r su rvivo rs, caregivers, and health care professionals. W e r e p o r t specifically on data fro m th e ir e x it in te rv ie w s regarding th e e xp e rie n ce o f being a c o m m u n ity re se a rch e r co n d u ctin g research on a su bject m a tte r th a t was v e ry personal. O v e ra ll, being a c o m m u n ity re se a rch e r was a re w a rd in g e xp e rie n ce th a t a llo w e d th e m to re fle c t c ritic a lly on th e ir o w n personal path and cancer experiences. Im p o rta n tly , this ro le p ro v id e d th e m w ith insights in to cancer and o th e r d isparities in th e ir c o m m u n ity beyond th e ir o w n situ atio n.

K e y w o rd s

CBPR, c o m m u n ity researchers, fro n tlin e w o rk e rs , cancer su rvivo rs, human subjects train in g , cancer needs assessm ent

Health disparities research is usually conducted within communities that bear an unequal and disparate burden of economic, social, and health disparities. Therefore, the importance of including laypersons who have close proxim­ ity to, and identification with, the targeted communities as community researchers within community-engaged proj­ ects is compelling. However, when laypersons are engaged in the role of community researchers and especially when they share multiple identities with the research participant, there are challenges and rewards associated with this role. The term community researcher is used to refer to a layper­ son who does not typically have any prior formal research training and most likely has minimal knowledge of, or experience with, the research process (Mosavel, Ahmed, Daniels, & Simon, 2011). In this study, we evaluate the experiences of 10 community researchers who interviewed cancer survivors, caregivers, and health care providers about the needs of cancer survivors from a low-income urban community in the Midwest.

Significance

researchers have identified the benefits to the research enterprise when the layperson adopts the role of researcher, not much is known about the benefits, if any, to the layper­ son (Flicker, Roche, & Guta, 2010; Hilfinger Messias et al., 2013). One of the likely benefits to the layperson might be self-empowerment as well as the empowerment of others either by providing support and/or by ensuring that their perspectives are included in the research process (St. John, Johnson, Sharkey, Dean, & Arandia, 2013). Although typi­ cally used in reference to peer-help support groups (Roman, Lindsay, Moore, & Shoemaker, 1999; Zemore, Kaskutas, & Ammon, 2004), the “helper therapy principle” may also apply to community researchers. The “helper therapy prin­ ciple” suggests that people derive empowerment from help­ ing others, thereby gaining supplementary benefit for themselves (Riessman, 1965). As with any role, there can be challenges—and at this point, there is a dearth of infor­ mation about the emotional and personal effects of being a community researcher. 'Virginia Com m onwealth University, Richmond, VA, USA ^N ortheast O h io Neighborhood Health Services, Cleveland, O H , USA

Community researchers can lend cultural relevance to a project, leading to findings that are more applicable and realistic to the community context (Beck, Young, Ahmed, & Wolff, 2007; Christopher, Gidley, Letiecq, Smith, & McCormick, 2008; Hilfinger Messias et al., 2013). While

C o r r e s p o n d in g A u t h o r :

Maghboeba Mosavel, D epartm ent o f Social and Behavioral Health, School o f Medicine, Virginia Com m onwealth University, P.O. Box 9 8 0 14, Richmond, V A 23298-0149, USA. Email: [email protected]

M o sa ve l a n d Sanders

In this brief report, we discuss the personal challenges and rewards of being a community researcher. Most impor­ tantly, this research specifically explores the challenges of being a community researcher who is also a cancer survivor or a caregiver. M e th o d

This study used a community-based participatory research approach to conduct a cancer needs assessment. The com­ munity researchers interviewed cancer survivors, caregiv­ ers, and health care professionals ( N = 32; Mosavel & Sanders, 2010). We established an advisory committee con­ sisting of providers, survivors, and caregivers to guide the design and implementation of this research. The urban com­ munity where the research was conducted was a largely low-income and predominantly African American commu­ nity in a Midwestern city. We received Institutional Review Board (IRB) approval from our local institution. All com­ munity researchers provided written informed consent. Each community researcher received US$25 per interview, in addition to reimbursement for transportation costs and time spent in training and doing any additional researchrelated administrative tasks. To ensure implementation fidelity, we provided specific protocol-related training and identified opportunities for direct and indirect assessments of the process (Marsh, Karnuya, Mlamba, Williams, & Molyneux, 2010). Logistical Support

Recognizing that it can be overwhelming for laypersons to leam a variety of new skills at a fast pace (Mosavel et al., 2011), we established two tangible methods of logistical support. First, we introduced the concept of a “research buddy,” whereby two community researchers would con­ duct all interviews together. The buddy concept has been used in applied settings (Baker, Benton, Friedman, & Russell, 2007; Hoque, 2010; Keating, 1987), but it is unknown whether it has been used previously for the pur­ pose of providing support to laypersons conducting research. Second, we assigned a research staff person to schedule all interviews and match community researcher schedules and their research buddy with that of the inter­ viewee to help eliminate logistical challenges. Recruitment

We recruited community researchers using various net­ works including the advisory committee, community part­ ners, and informal community networks. Eligibility criteria included self-identification as African American, living in or having knowledge of the targeted community, and being

75 a cancer survivor or a caregiver. Interested participants could contact either of the researchers or any of the advi­ sory board members. Data

We collected various evaluation materials including evalua­ tion about the protection of human subjects and interviewer training. We also collected debriefing reports about the inter­ view, working with the research buddy and undertaking administrative tasks. In this study, we report on the data from their exit interviews, which consisted of a self-administered survey with questions about their experience, working with a research buddy, their strengths, and perceptions about cancer. Data Analysis

We used a thematic approach to identify common themes based on responses to the open-ended questions. Two cod­ ers compared and discussed codes and reached agreement on the common themes. Inter-rater reliability was high (98%), and there were only differences on the best descrip­ tion for the various codes. M ain Findings D e m o g ra p h ic s . Ten females and two males ( N = 12) aged 29 to 60 (M = 49) participated in training and 10 continued in the role of community researcher. Two were unable to con­ tinue due to illness and caretaker responsibilities. Eight of the 10 were diagnosed with cancer: 2 with colon and 6 with breast cancer. The other 2 were caregivers of cancer patients. They all graduated from high school; 35% reported some college education and 15% had a college degree and 65% reported being unemployed. The following section describes the main themes that emerged from their exit interviews.

All the community researchers indicated that the cancer needs assessment study had a personal impact on them. Several indicated that they began to think differently about certain aspects of their life. For example, “My life has great meaning after being involved in this community research program,” or “I [have] given more attention and value to doing purposeful work (even parenting).” Beyond the personal reflections, many indicated that because of their role as community researcher, they became more interested in cancer advocacy and education in their communities. Sev­ eral indicated how the role of community researcher strength­ ened their own self-esteem. Illustrative comments include, “I am a good listener,” or “I did not know I was so influential to other people or had the ability to make so many people smile” or “that I am a walking wealth of wisdom. I know [now] what I have to share is of great value.” P ersonal im p a c t

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C o m m u n ity a w a re n e s s . The community researchers indicated that they learned a great deal about cancer disparities, the lack of cancer resources, need for cancer advocacy, and the resilience of cancer survivors. The majority indicated that interviewing others helped them discover areas of cancer knowledge they were lacking. For example, “I was unaware of some of the many resources [available to cancer patients]” and “I didn’t realize it touched so many people.” They said that they learned more about the challenges that other cancer patients encountered, including difficulty with patientprovider communication. Some indicated that they became more sensitized to the needs of caregivers. As one commu­ nity researcher stated, “[I] never considered the caretaker’s role. I was caught up in my own diagnosis and mortality.”

community researcher, shares various commonalities with the research participant, there may well be additional emo­ tional nuances and exposures to be managed (Mosavel et al., 2011). Each of the laypersons in this study had a per­ sonal connection with cancer either as a caregiver or as a survivor, and as such, interviewing others about their cancer needs evoked both vulnerabilities and augmented resilien­ cies within them. The experience of being engaged with other survivors, who were African American and primarily low-income, created personal epiphanies as well as a broader awareness of cancer disparities as it relates to the African American community. Their exposure to others who had intimate experiences with cancer survivors and their families not only heightened their own knowledge about the experiences but also in many cases served to make them feel connected to a larger cancer community. Furthermore, being a community researcher provided them with a sense of connectedness and worry for those whom they interviewed. Kingori (2013) talks at length about the moral and ethical dilemmas of frontline workers who some­ times feel that they withhold resources from their commu­ nity. Importantly, some of the community researchers felt affirmed hearing the cancer experiences of others; however, other community researchers indicated that it produced heightened anxiety. The potential risks to community researchers when they share various salient, personal iden­ tity, and other experiences must be further researched. This study had several limitations which must be noted and which limits any generalizability. First, this study reports on the qualitative experiences of 10 laypersons while they were engaged as community researchers on a cancer needs assessment. Compared with other types of qualitative research, 10 cases/community researchers may be consid­ ered inadequate. However, this study reports on 10 layper­ sons in the role of community researcher working on one research study. Furthermore, there are studies that report on community researchers with similar numbers (Hilfinger Messias et al., 2013; St. John et al., 2013), while others report on larger numbers but with aggregated data of com­ munity researchers across multiple projects (Fisher, True, Alexander, & Fried, 2013; Richman, Alexander, & True, 2012) or on large multi-national studies (Kingori, 2013). Furthermore, it could be considered a limitation that we report on cancer survivors and caregivers as single group; however, the goal of this report is to purposely share the experiences of laypersons with close proximities and per­ sonal connection to cancer, albeit from two perspectives. This pilot study suggests that there is a robust research agenda needed to fully understand the moral and ethical con­ siderations (Sieber & Tolich, 2013) associated when layper­ sons share multiple identities and proximities (Richman et al., 2012) with research participants. For example, researchers need to recognize the fluidity and intersections of the various identities, both as it relates to potentially

M a n a g in g th e re s e a rc h role. The role of community researcher included the challenging task of applying their newly attained knowledge. In their evaluations, they expressed concerns about their ability to listen to all the information, ensuring that all the questions were answered, and taking adequate notes. Although about half indicated that they found the task of interviewing others daunting, they also stated that they were able to improve their skills. C lose p ro x im ity to ca n ce r. Several indicated that they found themselves being very emotionally affected when listening to other survivors or caregivers talk about their cancer jour­ ney. For example, “just interviewing people and hearing the stressful challenges was too stressful.” Or, “I would get too emotionally involved when hearing someone’s story about cancer.” Conversely, others said that talking to other survi­ vors was helpful to them as they sensed a shared solidarity: “I am not alone and they too have the same fearful thoughts and emotions about cancer.” R e se a rch s u p p o rt. All the community researchers indicated that they found the addition of a research buddy very help­ ful. Two mentioned that having a research buddy made them feel safer when they conducted interviews in neigh­ borhoods with high crime rates. Furthermore, they reported that their research buddy not only helped them be on task but also shared responsibilities with them. For example, “It is always good to have two ears listening and just having someone to discuss with you afterwards.” For others, it was an effective way to check their work and increase confi­ dence, as indicated in statements such as “I think it was great! If I didn’t get something, then the buddy did.”

Discussion It is of critical importance for researchers to understand that for laypersons, being engaged in research is both an emo­ tional and task-oriented experience that can be fairly stressinducing. Furthermore, when the layperson, in their role as

M o sa ve l a n d Sanders

causing additional burden to the com m unity researcher or its im pact on the types o f data obtained. Further research is also necessary to exam ine how different levels o f cultural, social, and physical proxim ity can potentially affect the quantity and quality o f data (Sim on & M osavel, 2010). M oreover, som e o f the insights from this study suggest that w e need to carefully exam ine the intersection w ith, and associated con­ flicts of, the layperson as inescapable com m unity advocate and com m unity researcher (A nderson et al., 2012; D w yer & Buckle, 2009; M osavel et ah, 2011). This is one o f the first know n studies that has used a research buddy to jointly be responsible for various aspects o f the interview. N onetheless, further research needs to explore the extent to w hich the research buddy serves as a support but also as a fidelity measure. Laypersons, undoubt­ edly, contribute invaluable com munity-related assets, but in some cases, they may lack essential skills needed for certain aspects o f the research. For example, literacy may be an issue for some; it is therefore possible that the research buddy could have a valuable supplementary function. While researchers have examined research integrity in relation to the com m unity researcher (Richman et al., 2012), much less is known about the personal costs to the com munity researcher (M osavel et al., 2011) or the alienation or risks, including safety risks (Sieber & Tolich, 2013), that they may face. As more laypersons are included in com m unity-engaged research, it is critical to exam ine the ethical considerations and unintended risks associated with their role. The em ergent findings provide som e insights that can help direct this new, relatively unexplored area o f research associated with the challenges experienced by com munity researchers w hen they have multiple identities and proxim ities that are intertwined w ith the research topic and selected community. A c k n o w le d g m e n ts

We thank the community researchers for their dedication to this project. Thanks also to the project staff, Meia Jones, Catherine Oakar, Sabina Hossain, and Ayella Shams. And we thank the Lance Armstrong Foundation and the Case Comprehensive Cancer Center who provided funding for this research. D e c la r a t io n o f C o n f lic t in g In t e r e s t s

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. F u n d in g

The author(s) received no financial support for the research, authorship, and/or publication of this article. R e fe re n c e s

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A u th o r Biographies Maghboeba Mosavel is a health disparities researcher who con­ ducts community-engaged research. Her research focuses on exploring the ethical issues associated with research integrity and building capacity among community researchers. She is the aca­ demic PI of this project and was responsible for conceptualizing and writing this article. Kimberly D. Sanders is the program director at the Northeast Ohio Neighborhood Health Services, Inc. (NEON) in Cleveland, Ohio. She has a long-standing history of, and commitment to, addressing health disparities within a strong community-engaged framework. She was the community PI and assisted with the over­ all conceptualization of the paper and assisted with the discussion.

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Community-engaged research: cancer survivors as community researchers.

The personal rewards and challenges experienced by community researchers are not well explored. Training laypersons to be engaged in some or all aspec...
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