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. 2023 Nov 13;18(11):e0294170. doi: 10.1371/journal.pone.0294170

Experiences and lessons learned from community-engaged recruitment for the South Asian breast cancer study in New Jersey during the COVID-19 pandemic

Jaya M Satagopan 1,*, Tina Dharamdasani 1, Shailja Mathur 2, Racquel E Kohler 3, Elisa V Bandera 4, Anita Y Kinney 1
Editor: Erika Bonnevie5
PMCID: PMC10642833  PMID: 37956167

Abstract

Background

South Asians are a rapidly growing population in the United States. Breast cancer is a major concern among South Asian American women, who are an understudied population. We established the South Asian Breast Cancer (SABCa) study in New Jersey during early 2020 to gain insights into their breast cancer-related health attitudes. Shortly after we started planning for the study, the COVID-19 disease spread throughout the world. In this paper, we describe our experiences and lessons learned from recruiting study participants by partnering with New Jersey’s community organizations during the COVID-19 pandemic.

Methods

We used a cross-sectional design. We contacted 12 community organizations and 7 (58%) disseminated our study information. However, these organizations became considerably busy with pandemic-related needs. Therefore, we had to pivot to alternative recruitment strategies through community radio, Rutgers Cancer Institute of New Jersey’s Community Outreach and Engagement Program, and Rutgers Cooperative Extension’s community health programs. We recruited participants through these alternative strategies, obtained written informed consent, and collected demographic information using a structured survey.

Results

Twenty five women expressed interest in the study, of which 22 (88%) participated. Nine (41%) participants learned about the study through the radio, 5 (23%) through these participants, 1 (4.5%) through a non-radio community organization, and 7 (32%) through community health programs. Two (9%) participants heard about the study from their spouse. All participants were born outside the US, their average age was 52.4 years (range: 39–72 years), and they have lived in the US for an average of 26 years (range: 5–51 years).

Conclusion

Pivoting to alternative strategies were crucial for successful recruitment. Findings suggest the significant potential of broadcast media for community-based recruitment. Family dynamics and the community’s trust in our partners also encouraged participation. Such strategies must be considered when working with understudied populations.

Introduction

South Asians are individuals tracing their ancestry to Bangladesh, Bhutan, India, Maldives, Nepal, Pakistan, and Sri Lanka [1]. South Asians are among the fastest growing racial/ethnic minorities in the United States (US), increasing by over 46% from around 3.86 million in 2010 to around 5.6 million in 2019 [2,3]. New Jersey (NJ) is one of the most diverse states in the US where over 940,000 (10%) of the state’s nearly 9.3 million residents are Asians [4]. More than 44% of NJ’s Asians are South Asians, making them the largest Asian subgroup in the state. South Asians living in NJ and elsewhere in the US, henceforth referred to as South Asian Americans, confront a wide range of health issues and are an at-risk population for disproportionate burden of chronic diseases, including cancer [5–7].

Despite their growing numbers, South Asian Americans remain one of the most under-studied minority populations in health research [5,8,9]. The paucity of data on the health of South Asian Americans has been attributed to aggregation of Asian American subgroups under a combined “Asian American and Pacific Islander” category in most studies and to lack of participation and engagement of the South Asian American community in scientific studies of breast cancer [5,9–11]. Although large population-level health studies (for example, the National Health Interview Survey) now obtain disaggregated race/ethnicity data, the sample sizes of Asians and Asian subgroups in these data sets remain small and few research investigations of these large studies report results disaggregated by Asian American subgroups [12].

Breast cancer is a growing concern among South Asian American women due to their rapidly increasing breast cancer incidence [13–16]. Compared to non-Hispanic White women, South Asian American women are more likely to be diagnosed with breast cancer at younger ages and with advanced disease [17–20]. However, there is limited breast cancer-related data available from South Asian American women to understand these disparities and little is known about their breast cancer-related health attitudes and experiences [21,22]. Breast cancer is amenable to risk reduction, screening, and early detection. Yet, studies have reported that South Asian Americans have low mammogram screening rates [23–26]. Research investigations into breast and other cancer-related health have called for further studies to understand the determinants of adherence to age-appropriate screening behaviors in South Asian American women [27,28]. Qualitative studies of South Asians from the United Kingdom (UK) and Canada have reported spiritual connection, fear about cancer, and pain as barriers to cancer screening, and a desire to be healthy to be a motivator for screening [29–33]. A qualitative study of mammography screening practices of Muslim American women, which included Muslim women of South Asian origin, reported that theocentric views of cure and illness inform health decision frames that impact mammography intention [33]. Despite such investigations, a comprehensive understanding of breast cancer-related health attitudes of South Asian American women remains low.

Therefore, we established the South Asian Breast Cancer (SABCa) study at Rutgers, The State University of New Jersey (Rutgers University), the home institution of the authors of this study. Plans for the study began during early 2020 with the overarching goal of gaining insights into breast cancer-related health attitudes and healthcare experiences of South Asian American women. This study consisted of 3 components. The goal of Component 1 was to recruit South Asian American women without a prior diagnosis of cancer by partnering with community organizations and conduct focus group discussions to assess knowledge, attitudes and perceptions about breast cancer, risk factors, preventive care, and participation in breast cancer-related scientific studies among these women. The goal of Component 2 was to recruit South Asian American women diagnosed with breast cancer by partnering with the NJ State Cancer Registry and conduct focus group discussions to assess knowledge, attitudes and perceptions about survivorship care, follow-up care, and participation in breast cancer-related scientific studies among these women. The goal of Component 3 was to recruit healthcare professionals from Rutgers University’s hospitals and conduct structured interviews to assess their experiences in providing care to South Asian Americans for breast cancer or any chronic disease.

In this paper, we focus on community-based recruitment of South Asian American women to Component 1 focus groups. We describe our community-based recruitment approaches. We did not plan community-based recruitment for Components 2 and 3, for which we planned partnership with Rutgers Hospitals to recruit a healthcare professionals and partnership with NJ State Cancer Registry to recruit South Asian American women with breast cancer, both of which were ongoing at the time of preparing this manuscript. Analysis and results of the focus groups discussions for Component 1, recruitment, and analysis of Components 2 and 3, and cross-component comparisons are outside the scope of this paper and will be reported elsewhere.

According to the US Census, New Jersey has the third largest South Asian American population in the US after California (CA) and Texas [34]. Over 9.1% of South Asians in the US live in NJ. Around 5% of NJ’s population are of South Asian origin. This concentration of South Asian American community supports the feasibility for the SABCa study to recruit participants through community partnerships in NJ.

Several studies have recommended various strategies such as engagement with community leaders and community-based organizations, _targeted communications on social forums, and chain referral approach for recruitment of South Asians in the community [5,6,35]. If our study were to be conducted prior to the COVID-19 pandemic, recruitment methods would typically include disseminating study information by attending community venues (such as places of worship and community centers) and in-person community-based events (such as religious events, cultural events, and health events). We reached out to various South Asian community organizations in NJ to partner with them to disseminate information about the SABCa study and to recruit participants. However, the COVID-19 pandemic began shortly after we established our study. The pandemic introduced unique challenges for community-based recruitment. The South Asian community organizations in NJ suspended their in-person meetings and events due to lock downs and social distancing requirements [36]. Further, many organizations were called to develop and implement pandemic-related responses for the communities they serve, limiting their ability to assist with community-based recruitments for our study [37,38]. Additionally, due to the devastating delta variant wave in South Asia between March and May 2021, much of the South Asian American community was engaged in providing emotional support to their families living in South Asia [39,40], which curtailed community-based recruitment efforts during this period.

People were spending considerable time on the internet during the pandemic, and social media platforms were increasingly used for transnational communications by the South Asian diaspora. Advertising the study through social media platforms was a potential possibility. However, the pandemic also became a period of infodemic when misinformation and low-credibility information were spreading rapidly through social media platforms [41,42]. Studies were also reporting on the adverse impact of social media use on symptoms of fear, anxiety, and depression during this time [43,44]. Therefore, we had to be wary of placing advertisements about our study on social media. We did not want the advertisement to be lost in the vast volume of infodemic. However, people were increasingly engaging with social media of trusted sources such as community organizations with which they had previously established relationships. Therefore, we encouraged the community organizations to share our study information through their social media platforms. However, due to considerable burden on the time and resource of community organizations during the pandemic, we had to identify alternative nuanced approaches to recruit participants from NJ’s South Asian community.

This paper summarizes the approaches that we pursued for community-based recruitment during the pandemic to recruit South Asian women without a prior diagnosis of breast cancer to the SABCa study. We reflect on our experiences and summarize our lessons learned. Our experiences and lessons learned offer effective strategies for partnering with the South Asian American community in the future even beyond the pandemic and can be useful for establishing successful collaborations with other understudied populations as well.

Materials and methods

This is a cross-sectional design, where we collected data from study participants at a single point in time [42,45,46]. The study population consisted of South Asian American women. Planning for recruitment began in March 2021. Recruitment was done locally in NJ between June 2021 and July 2022 by partnering with various organizations serving the South Asian American community. The Rutgers University Institutional Review Board (IRB) approved the study. All study participants provided electronic written informed consent through a Rutgers-approved secure Docusign® platform.

Eligibility criteria

Eligibility criteria included: (1) self-identified as having South Asian ethnic or cultural ancestry; (2) self-identified as female; (3) age 25 years or above; (4) self-reported as having no prior history of any cancer; (5) able to read and speak English; (6) able to understand and be willing to provide informed consent; and (7) have access to an electronic device (such as computer or tablet or smart phone) to provide electronic consent and to attend an online focus group session. The last criterion was precipitated by the COVID-19 pandemic when in-person meetings were suspended for an extended period.

_target sample size

In qualitative studies that use focus groups, data saturation is the gold standard approach for determining the number of focus groups and, thus, the total number of individuals in a study. By definition, saturation can be determined only during or after data analysis [47]. Research and budgetary planning require an initial guidance on the sample size before the study is implemented [47]. This was especially crucial during the COVID-19 pandemic when Rutgers University implemented a spending freeze, warranting forethought on a _target sample size for budgetary planning of our study [48].

Guest and colleagues conducted an empirical study of 40 focus groups to derive non-probability sample sizes guidelines and found that 90% of all themes in a study are discoverable within 2 to 6 focus groups, 3 focus groups are enough to identify the most prevalent themes, and theme discovery reaches a plateau at 4 focus groups [47]. Hennink and colleagues also found that 4 focus groups are sufficient to achieve saturation [49]. Krueger and Casey recommend 5 to 8 participants per focus group [50]. Building on these guidelines, we planned our study budget to recruit 18 to 32 eligible participants to conduct 3 to 4 focus groups with around 6 to 8 participants per focus group.

Recruitment methods

We began planning the SABCa study in 2020. After obtaining IRB and budgetary approval, we began our recruitment efforts during early March 2021 and recruited participants between June 2021 and July 2022. We used several approaches for recruitment: partnering with community organizations who disseminated study information to the community they serve, describing the study at a community-focused Science Café, disseminating study information through community-focused health education, and snowball sampling. Convenience based sampling was used for all recruitment methods where interested participants would contact study staff to enroll in the study. Table 1 shows the chronology of our recruitment efforts, which we describe below. Study outreach efforts were done in English language only since we did not have the resources to translate study materials to multiple South Asian languages or to recruit research staff with multiple language skills during the COVID-19 pandemic.

Table 1. Timeline of community engagement activities.

TIME COMMUNITY ENGAGEMENT ACTIVITY
June 2020 Began interactions with Rutgers Co-op. PI invited by Rutgers Co-op to discuss breast cancer in radio talk show.
March 2021 Introduced study to South Asian cultural, religious, and health screening organizations in NJ. Presented study at CINJ COE’s Community Science Café. Sustained communications with South Asian community in NJ.
April 2021
May 2021 Advertised study through radio. Participated in radio talk show about breast cancer. Introduced study to health service organizations in NJ. Participant enrollment initiated.
June 2021
July 2021 Described our research program and study in Citizen Science sidewalk science video.
October 2021 Enrollment crossed 10 participants.
May 2022 Presented study at Rutgers Co-op’s community-focused online health education program.
July 2022 Enrollment reached 22 participants.
September 2022 Described our research program and study at a South Asian community event in NJ.
October 2022 Wrote article about breast cancer for a South Asian community magazine in NJ.
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Abbreviations: Rutgers Co-op = Rutgers Cooperative Extension, CINJ = Rutgers Cancer Institute of New Jersey, COE = Community Outreach and Engagement office.

Study flyer

We prepared our study flyer by incorporating specific aspects of South Asian culture. The flyer had a watermark showing heaps of spices that are commonly used in the South Asian culture. The flyer was largely yellow in color to represent turmeric, a commonly used spice. The flyer border and the horizontal lines to separate information were in red color to represent powdered chili, a commonly used spice, and to represent henna and vermillion, which are commonly used for cosmetic needs in the South Asian culture (see S1 Fig).

South Asian community-based organizations

During early March 2021, we contacted various South Asian cultural, religious, and health screening organizations in NJ. We identified these organizations through our previously established strong community connections: Two of this paper’s authors (JMS and SM), who are of South Asian origin and have lived in NJ for over 25 years, have long-standing social interactions with these cultural and religious organizations. South Asian health screening organizations offer free services such as blood test, eye screening, dental screening, physical examination, cardiology evaluation, physical therapy, weight management counseling, and mental health counseling, amongst others, to the South Asian community. We also presented our study at a Community Science Café organized by Rutgers Cancer Institute of New Jersey Community Outreach and Engagement (CINJ COE) office, where community members bring their unique perspectives on research to provide input to scientists. Upon recommendation from the Community Science Café audience, we contacted health service organizations in NJ whose catchment population include the South Asian community. These health service organizations provide, finance, supervise and evaluate health care activities in NJ.

We introduced the SABCa study and explained the eligibility criteria to these cultural, religious, health screening, and health service organizations and requested them to share the study flyer with their community listserv via e-mail. While we did not place advertisements about our study in social media due to infodemic concerns, we encouraged the community organizations to share the study information through their social media groups. Since these organizations are trusted by the South Asian American community, we felt that community members are more likely to engage with the study flyers shared by the organizations through their social media groups without dismissing it as a COVID-19-related infodemic. However, we did not track the social media pages of these organizations to check engagement of community members with advertisements placed by community organizations in their social media pages. The COVID-19 pandemic was still in full swing during March 2021. We reached out to a member of the leadership team (such as President or Secretary) of 12 community organizations, of which 7 (58%) agreed to disseminate the study flyer. However, these community organizations quickly became busy assisting their communities with pandemic-related needs and were unable to disseminate the study information frequently or widely as originally planned. Only one participant who heard about the study through community organizations contacted the SABCa study staff expressing interest in the study.

Within two weeks of sending our study flyers to the community organizations, South Asia, especially India, experienced an intense delta variant pandemic wave. This wave began in mid-March and lasted for around 3 months and declined after peaking in mid-May 2021 [51]. Several South Asian Americans were providing emotional support to their families living in South Asia. To empathize with the South Asian American community, we paused recruitment during this period by not repeatedly requesting the community organizations to disseminate study materials. We used this period to learn more about South Asian Americans’ sources of credible information during this challenging time. Discussions amongst the study team and conversations with personal contacts revealed that broadcast media (radio) catering to South Asian Americans and Rutgers-based community engagement programs are likely to be constructive recruitment strategies during this time.

Broadcast media (radio)

During the COVID-19 pandemic, public media consumption started increasing and many were listening to as much or more radio compared to before the pandemic [52]. Radio personalities such as radio jockeys and talk show hosts were providing timely information about the pandemic and became people’s primary connection to the outside world during a time of considerable uncertainty and disrupted routines. The public increasingly held radio personalities in high regard and trust [52]. There are numerous radio stations in New Jersey. One of these radio stations is widely heard in New Jersey, New York, and Eastern Pennsylvania, reaching a population of over 500,000 in the listening areas. This radio station serves the South Asian community by offering a unique blend of programs including popular South Asian Bollywood film music, news programs, and talk shows about South Asian recipes, spirituality, society, and health, amongst other topics. The radio personalities cater to all South Asian ethnicities, transcend age groups and boundaries, and expose listeners to South Asian culture. Thus, this radio station, which we refer to henceforth as community radio station, is popular among South Asians living in NJ. Rutgers Cooperative Extension (Rutgers Co-op), which provides a diverse range of research, extension, and education programs to the people of NJ, partners regularly with this community radio station to disseminate health education about chronic diseases for the community. During the planning stages of the SABCa study in 2020, Rutgers Co-op invited the PI for a discussion about breast cancer in a radio talk show during June 2020. Leveraging these prior interactions, we partnered with this community radio station during May 2021 and promoted our study through their commercial time slots between late-May 2021 and late-June 2021 (see S2 Fig).

The radio personalities read the script with South Asian music playing in the background during short breaks in popular Bollywood film music programs, news, or talk shows, once in the morning and once in the evening. They began narrating the script by saying “namaste”, which means “hello” in several South Asian languages and closed by saying “dhayavad” or “shukriya”, which means “thank you”. The community radio station also invited us to participate in a talk show about breast cancer during June 2021. The PI described the SABCa study in this talk show program and encouraged listeners to share the information in their community networks. A total of 11 individuals contacted us expressing interest after hearing about the study through the radio.

Rutgers-based community outreach programs

We worked closely with two Rutgers-based community outreach programs–Rutgers Cancer Institute of New Jersey Community Outreach and Engagement office (CINJ COE) and Rutgers Cooperative Extension (Rutgers Co-op). During July 2021, we described our breast cancer research program, including this study, in a Science Café sidewalk video prepared and disseminated by CINJ COE. The Science Café sidewalk video is a community-focused short video where a researcher summarizes their research program, its significance, and impact to community members. The PI summarized the SABCa study in a Science Café sidewalk video. The CINJ COE office distributed the video to the entire NJ community through social media–especially, Facebook and LinkedIn. Rutgers Co-op conducts multiple online synchronous health programs for South Asian Americans living with chronic diseases. We presented our study at a Rutgers Co-op online community health program during May 2022. We distributed the study flyer through this program and encouraged program participants to share the information through their networks. We also shared the study flyer widely through Rutgers Co-op’s community networks. Eight individuals heard about the study through Rutgers Co-op and contacted us expressing interest in the study.

Snowball sampling

Previous studies have successfully recruited participants using snowball sampling strategy and recommend using this approach for recruiting hard-to-reach populations such as South Asian Americans [6] and Vietnamese Americans [12]. Therefore, we encouraged the participants recruited through different approaches described above to share the study information with their network and refer their eligible and interested contacts to our study. Five acquaintances of the individuals who heard about our study through radio promotions contacted us expressing interest in the study.

Participant enrollment

Interested individuals contacted study staff using the IRB-approved contact information provided in the study flyer or in the radio script. Two authors (JMS and TD), who are women of South Asian origin, served as the study staff. Some individuals who heard about the study through Rutgers Co-op initially contacted one of the authors (SM), who is a Rutgers Co-op staff and a woman of South Asian origin. Thus, there was cultural concordance between study contacts and study participants. One of the authors (SM), who is widely known in NJ’s South Asian community, explained the study to individuals contacting her, and then forwarded the contact information of eligible interested individuals to the study staff. The study staff explained the study to each interested individual, answered their questions, confirmed eligibility, and registered them by taking down their name and contact information. The staff sent participants a sample electronic copy of the informed consent document and a link to a Rutgers-approved online virtual room to complete the informed consent and a structured survey at a mutually agreed date and time. This allowed the participants to review the informed consent in advance and contact the study staff with any questions.

Participant survey

To understand the characteristics of the participants recruited through our approaches, we used a structured survey hosted on a Rutgers-approved secure Qualtrics® online survey platform. The survey was administered in English language. We obtained information on sociodemographic characteristics such as participants’ age, languages spoken, highest education level, marital status, and country of birth, and acculturation-related characteristics such as number of years lived in the US, languages spoken with friends, and type of engagement in the South Asian community. We offered an incentive of $25 in electronic gift card to each participant for completing the survey.

Procedure for completing informed consent and survey

Study staff met with each participant in a Rutgers-approved secure virtual room to complete the informed consent and the survey. Participants signed informed consent via a Rutgers-approved online DocuSign® electronic agreement platform. Study staff guided participants with any technology questions that arose when using this platform.

Statistical analyses

We calculated “cooperation rate” as the ratio of the number of women participating in the study to the number who called the study phone number expressing interest in the study. We calculated descriptive statistics for the survey responses and tabulated them overall and according to recruitment approach i.e., through community organizations or radio, partnership with Rutgers Co-op, or snowball sampling. We conducted these analyses using the SAS software version 9.4 (SAS Institute, Cary, NC). We did not conduct formal hypothesis tests to compare participant characteristics across the recruitment methods due to limited sample size.

Results

A total of 25 women of South Asian origin contacted us expressing interest in our study. Three (12%) women– 2 that heard about the study from radio promotions and one that heard through Rutgers Co-op–did not respond to subsequent communications from the study staff. After 5 failed attempts to reach them, we assumed that they were no longer interested in the study. All the remaining 22 women satisfied the eligibility criteria and completed informed consent and the survey. We did not lose any participant once they provided consent. Therefore, our total sample size was 22 participants. The overall cooperation rate was 88% (= 22/25), and the rates were 82% (= 9/11) for recruitment through community radio, 87.5% (= 7/8) for community-focused health programs, and 100% (= 5/5) for snowball recruitment. Of the 22 participants, 10 (45%) were recruited through community organizations or radio, 7 (32%) were recruited through Rutgers Co-op, and 5 (23%) were recruited through snowball sampling.

Table 2 summarizes the participant characteristics. The average age based on all 22 participants was 52.4 years (range: 39 to 72 years) and the average number of years they have lived in the US was 26 years (range: 5 to 51 years). The average age was at least 50 years and the average number of years lived in the US was at least 22 years in each recruitment approach–community organization or community-based radio, Rutgers Co-op, and snowball sampling. All the participants were born outside the US– 95% of them were born in India (other countries of birth not given to protect confidentiality of participants due to small sample size). All the participants recruited through community organizations or community-based radio, 57% of those recruited through Rutgers Co-op, and 80% of those recruited through snowball sampling reported speaking at least two South Asian languages. At least 60% of the participants used English and South Asian languages equally or English more than South Asian languages to speak with friends or used English as a preferred language for movie or television or radio programs, regardless of the recruitment approach. Most participants had master’s degree or professional degree or doctoral degree (60% recruited through community organizations or community-based radio, 57% recruited through Rutgers Co-op, and 100% recruited through snowball sampling). All the participants reported being actively engaged in New Jersey’s South Asian community through religious organizations, cultural events for children or adults, social events with friends or family, and volunteering opportunities for the community.

Table 2. Characteristics of study participants.

Sample Characteristics Community organization and community-based radio Rutgers Co-op Snowball Total Sample
Total number of participants 10 (45%) 7 (32%) 5 (23%) 22
Age: Mean (SD) (Range) 53.2 (7.3)
(Min: 39, Max:64)		 53.1 (7.2)
(Min: 43, Max: 66)		 50.0 (12.7)
(Min: 41, Max: 72)		 52.4 (8.4)
(Min: 39, Max: 72)
Number of years lived in the U.S. Mean (SD) (Range) 29.0 (9.4)
(Min: 19, Max: 50)		 24.1 (10.8)
(Min: 5.5, Max: 35.0)		 22.4 (17.3)
(Min: 5, Max: 51)		 26.0 (11.7)
(Min: 5, Max: 51)
Languages spoken*
English 10 (100%) 7 (100%) 5 (100%) 22 (100%)
Gujarati 6 (60%) 1 (14%) 1 (20%) 8 (36%)
Hindi 9 (90%) 7 (100%) 4 (80%) 20 (91%)
Tamil 3 (30%) 0 (0%) 3 (60%) 6 (27%)
Number of South Asian languages spoken
1 0 3 (43%) 1 (20%) 4 (18%)
2–5 10 (100%) 4 (57%) 4 (80%) 18 (82%)
Language spoken with friends
South Asian language only or better than English 0 (0%) 1 (14%) 2 (40%) 3 (14%)
South Asian and English equally 4 (40%) 5 (72%) 3 (60%) 12 (54%)
English only or better than South Asian language 6 (60%) 1 (14%) 0 (0%) 7 (32%)
Preferred language for movies, television, or radio programs
South Asian language only or better than English 1 (10%) 2 (29%) 2 (40%) 5 (23%)
South Asian and English equally 4 (40%) 4 (57%) 2 (40%) 10 (45%)
English only or better than South Asian language 5 (50%) 1 (14%) 1 (20%) 7 (32%)
Education
College or some college 4 (40%) 3 (43%) 0 (0%) 7 (32%)
Master’s degree or Professional or Doctoral degree 6 (60%) 4 (57%) 5 (100%) 15 (68%)
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*The total number exceeds 22 since some participants spoke multiple South Asian languages. Other languages spoken by participants (not shown in the table due to small frequencies): Marathi, Kutchi, Urdu, Malayalam, Punjabi, Telugu. Abbreviation: SD = standard deviation, Min = minimum, Max = maximum.

Most of the study participants were from Middlesex County (41%) or Somerset County (23%), which are home to large South Asian communities in NJ [4]. The remaining participants came from 4 other New Jersey counties (county names not provided to protect privacy of the participants due to small frequencies). These align with the concentration of NJ’s South Asian population around Middlesex County and its adjacent counties–Middlesex County is the largest home and the adjoining Somerset County is the fourth largest home to NJ’s South Asian population. Three of the 7 community-based organizations that disseminated our study information and the community-based radio have Middlesex County as their headquarters, and one out of the 7 community-based organizations operates from Somerset County.

Lessons learned

Leveraging broadcast media to strengthen community partnerships and credibility

Although the radio script includes the study’s contact phone number and email, initially individuals reached out to the community radio to enquire about the study. The community radio station encouraged them to contact the study staff, and interested individuals subsequently reached out to us. This worked very well. We were also keen to build stronger connections with the radio listeners. Therefore, to help us build better rapport with the listeners, the community radio station invited us to participate in a talk show to describe our breast cancer research program and the SABCa study and summarize current advances in breast cancer prevention, early detection, and treatment. This was an opportunity for listeners to hear directly from us. Subsequently, participants started contacting us directly. Some participants also remarked that they found our research efforts to be very meaningful and that hearing the talk show helped them better understand the credentials and scientific credibility of the study investigators and the importance of this research.

Handling fraudulent responses to study announcement

In the study flyer, we provided email and phone numbers for interested individuals to contact the study staff. As an additional option, we also included a link to an IRB-approved online survey page, where interested individuals could provide their phone and email contact information so that study staff could contact them. This appeared to be a good plan at the outset. However, we encountered considerable challenges with this online survey shortly after community organizations disseminated the study flyer via their listserv and social media. We received 88 responses in this online survey. Of these, 85 responses were recorded on a single day, each only 2 seconds apart. The phone numbers provided for these responses differed by just one digit. The email addresses of all the responses had identical patterns: a few alphabets, followed by two digits, and @gmail.com. All the IP addresses were from CA. Due to these patterns, we concluded that these are fraudulent responses. We closed this survey page and decided to not use this further. In all our subsequent dissemination of study information through the community radio and Rutgers Co-op, we asked interested individuals to contact us via phone or email.

Leveraging male champions of women’s health

Since the radio script for our study addressed South Asian American women, we expected only interested women to reach out to us. One South Asian American male heard the study promotion through the radio. This male reached out to us to learn about the study and gave the study’s contact information to their spouse, encouraging the spouse to participate. Another South Asian American male heard the study through a radio talk show and encouraged their spouse to directly contact the study staff and participate. Both spouses enrolled in the study. This highlighted the significant role of family dynamics in South Asian American communities and the potential for leveraging men as champions of women’s health. Therefore, when we presented our study at an online community health program organized by Rutgers Co-op, we encouraged both women and men to join and asked everyone, not solely women, to share the study information with their networks.

Assisting participants with technology challenges

Although people were making considerable use of online resources during the COVID-19 pandemic, some study participants had difficulties navigating the online technology tools to join a virtual meeting room via Rutgers-approved Zoom® platform or provide electronic informed consent via Rutgers-approved Docusign®. Therefore, study staff prepared training modules for the participants, communicated with them via telephone to build rapport, and guided them with using these technology tools. Study staff were also flexible and offered alternative approaches such as allowing participants to submit an image of a signed paper copy of the informed consent. Being available to assist participants, empathizing with the comfort levels of individuals in using technology tools, and offering them alternative strategies were critical for retaining these participants in our study.

Dialogues with community as a facilitator of trust and research participation

Our participation in the community radio station’s talk show and presentation at an online community health program organized by Rutgers Co-op allowed the audience to hear directly from us. The community radio station and Rutgers Co-op were our cultural research brokers, who were trusted by NJ’s South Asian American community. These cultural research brokers introduced us to their audience by mentioning our credentials, including our advanced degrees, experience in the field, and prior research works. Such credentials are held in high regard by the South Asian American community. Together, these contributed to individuals building trust in our research and participating in our study. This trust also contributed to snowball sampling. Some participants became our advocates by enthusiastically sharing our study information with their acquaintances, encouraging them to participate.

At the time of enrollment, some participants informed us that they are keen for their young daughters and other family members to learn about breast cancer and asked us for resources. We directed them to Rutgers CINJ’s Breast Cancer Resource Center [53]. In an effort to sustain our dialogues with the community, to continue to build trust, and to contribute to advancing the health of South Asian American women, the PI wrote an introductory article about breast cancer in a community organization’s newsletter during October 2022 [54] and recruited a South Asian American woman to the CINJ Community Cancer Action Board.

Discussion

In this paper, we described the approaches we took to recruit participants for the SABCa study from NJ’s South Asian American community during the COVID-19 pandemic and summarized the lessons learned from our recruitment experiences. To our knowledge, this is the first study on recruitment of South Asian American women through community partnerships during the COVID-19 pandemic. We had considerable difficulty recruiting participants through community organizations since the pandemic-related needs of the communities placed significant demands on their time. We also received fraudulent responses to our recruitment efforts through a survey where interested individuals could provide their contact information for study staff to reach them. Participants’ trust in the community radio as a credible source of information and their trust in the staff of online community health programs led by Rutgers Co-op led to successful recruitment. The community radio and Rutgers Co-op were credible cultural brokers who helped the community understand the credentials and scientific credibility of the study staff and the importance the study. The overall cooperation rate was 88% and the rates corresponding to recruitment through the radio and Rutgers Co-op’s networks exceeded 80%.

In our study, one (4.5%) out of the 22 total participants was recruited from community organizations. This participant was recruited after contacting 12 community organizations. Other studies have reported low participation of community organizations and low recruitments from community organizations during the COVID-19 pandemic. A study of Vietnamese Americans contacted 320 community organizations, 28 (8.75%) agreed to announce the study, and 68 participants were recruited i.e., 5 community organizations were contacted to recruit 1 participant [12]. In another study, 422 community organizations were contacted to recruit Korean Americans, 72 (17%) announced the study, and 13 participants were recruited i.e., 32 organizations were contacted to recruit 1 participant [55]. Due to low participation, Vu and colleagues recommend that studies of Asian Americans must contact a large number of community organizations to even achieve a modest sample size [12]. In a survey of researchers funded by the U.S. National Institute of Health to conduct clinical trials through community-based recruitment, respondents reported using online recruitment as one of the methods to navigate COVID-era recruitment challenges [56]. However, a study from Canada on mothers who have experienced domestic abuse and a UK-based study of South Asian women who had experienced gender-related violence found that collaborative relationships with community partners or gatekeepers is crucial for successful recruitment even when pursuing online recruitment [57,58]. The pandemic placed considerable strains on NJ’s South Asian American community organizations, which may explain only one participant recruited through community organizations in our study.

However, tenacity is critical for achieving recruitment goals. To this end, Louw and colleagues recommend implementing innovative and creative approaches that involve building genuine and trustworthy conversations and collaborations with the community and maintaining that trust and relationships [59]. To build such connections with the community, we partnered with a community radio station catering to South Asian Americans and collaborated with Rutgers Co-op to engage with their community-based online health program and to reach their community networks. Through these experiences we learned the value of being prepared to pivot to alternative recruitment strategies when the pandemic precluded community organizations from devoting time and effort to assist with recruitment for research studies.

Our study’s participants had lived in the US between 5 to 51 years (average = 26 years). All 22 participants were born in a South Asian country and are, thus, immigrants. The history of immigration of South Asians to the US dates to the early 1700s [60]. However, the growth of South Asian population in the U.S started increasing only after the Immigration and Nationality Act of 1965 [60,61]. A large number of immigrants came to the US seeking higher education or as working professionals with advanced degrees, including information technology (IT) professionals, and to meet the needs of the American economy of professionals and technology [60,62,63]. Several came as blue-collar workers and had less English fluency and less education than the professional immigrants [64,65], or came as families of students and professionals. Thus, the South Asian diaspora includes the upwardly mobile professional class and the blue-collar working class, and is diverse in education attainment and language proficiency, amongst other characteristics [60].

In our study, 14 participants have lived in the U.S for more than 20 years and, thus, belong to the first or second wave of immigrants, and the remaining 8 belong to the recent wave. The high proportion of master’s or professional degrees and the use of English language (equal to more than the use of South Asian languages) to speak with friends and as a preferred language for entertainment may reflect the typical demographics of South Asian immigrants who arrived as professionals or students. This suggests that additional strategies, over and above partnering with the community radio station and community-focused health programs, are needed to recruit South Asian Americans participants from other demographic subgroups. Indeed, a socio-behavioral study from Mozambique noted that engagement with community organizations is critical for recruiting participants during the COVID-19 pandemic, and that the use of alternative engagement approaches such as the radio or online platforms may vary among individuals [63]. A study of Muslim immigrant women and Arabic-speaking older adults from Canada used digital platforms to collect data during the COVID-19 pandemic but encountered difficulties engaging with those having low digital literacy [36], a concern also expressed by other studies [66,67]. A UK study of South Asian women facing gender violence, which recruited participants using Facebook and was conducted before the COVID-19 pandemic, also echoed the vital role of working closely with community organizations to ensure that `invisible groups’ are not created comprising those who do not prefer technology [58]. We began our study by partnering with a broad range of community organizations. However, the COVID-19 pandemic put considerable strain on their time and resources, limiting our ability to partner with a wide range of organizations. In the future, we must be mindful of such issues during times of crises, which could lead to recruitment from limited demographic subgroups.

A previous study reported paternalistic and shared family decisions and altruism to be important facilitators of recruitment and retention of South Asian Americans in clinical trials [68]. Indeed, two women in our study were encouraged by their male spouses to participate and some women told us that they decided to participate because they found our study to be meaningful. Prior studies identified lack of time and cost of participation, and logistical challenges including childcare and transportation as key barriers to research participation [5,6,69,70]. Since our study was conducted via a Rutgers-approved online Zoom® platform, there was no issue of transportation for the study participants. The COVID-19 pandemic exposed the dependence of world economies on the invisible and unpaid care labor of women [71]. Lack of time due to childcare and other family care may have been barriers for some women to enroll in our study even though our study did not require travel. Another barrier could have been technology challenges. Although we assisted participants with technology for joining the virtual Zoom® room and for providing electronic informed consent, some women may not have participated in the study due to technology concerns at the outset.

Several participants (45%) heard about the study through the community radio. Studies from the pre-COVID-19 era have recommended radio ads and live radio segments such as talk shows to recruit U.S minority populations, but a study of diabetes and obesity in South Asians from the UK found that disseminating study information through the radio was not successful for enrolling participants [72,73]. A study of recruitment preferences of various Asian American subgroups conducted during the COVID-19 pandemic in CA between February and May 2021 found that preference for hearing about a study through radio or television versus a study flyer varied across Asian American subgroups–Vietnamese Americans preferred ethnic radio or television, Japanese Americans preferred flyers, and Asian Indian Americans had no preference [74]. However, in our study conducted in NJ where recruitment was done between March 2021 and June 2022, only one participant was recruited by disseminating study flyers via email or social media through community organizations. The effectiveness of the community radio in our study may reflect differences between South Asians in CA and NJ or differences in the recruitment period.

Previous studies have found several facilitators for successful recruitment and retention of South Asian women in research, including cultural alignment where study staff are also women of South Asian origin, cultural research brokers who possess advanced degrees, providing incentives, and altruism [5,69,70,75]. Cultural alignment is also an important facilitator for recruitment and retention in other Asian American cultures. For example, a study of Chinese Americans found integrating cultural values into study materials and messaging to be important strategies for maximizing engagement and retention [76]. In our study, in addition to cultural concordance of the study flyer and radio ads, 3 of this paper’s authors (JMS, TD, and SM) represent diverse South Asian origins and have advanced degrees. Further, one of the authors (SM), who is affiliated with Rutgers Co-op, has long-standing ties with NJ’s South Asian American community and conducts community health education programs. Two of the paper’s authors (JMS and SM) also have long-standing connections with various South Asian cultural and religious organizations in NJ. Some participants perceived their participation to have health benefits for the broader community. We offered $25 electronic gift card for enrolling in the study and completing the structured survey. Systematic literature reviews have shown that these facilitators to minority research participation are also shared by African Americans, Latinos, and Filipino Americans [77] and by participants in Australia, Canada, South Africa, the UK, and other countries [78].

Studies from Europe [79,80], the UK and Africa [81,82], India [83], and the U.S [84] have found some participants to have difficulties using digital technology. In our study, some participants experienced difficulties connecting to the virtual room and in using the electronic platform to provide informed consent. One of the authors (TD) prepared a tutorial and guided the participants with the use of technology.

Limitations

Our findings should be interpreted considering the following limitations. We conducted our study in English and met participants in a virtual room. The COVID-19 pandemic in the U.S and the delta variant wave in South Asia may have affected the lives and well-being of NJ’s South Asian Americans in numerous ways, impacting their ability to participate in our research even if they were proficient in English and in the use of digital technology. We did not collect data on the COVID-19-related well-being of our study participants to determine whether our study consisted only of those individuals who were less affected by the pandemic.

English proficiency of South Asian Americans is 77% for Asian Indian Americans and 71% for Pakistani Americans, who constitute the largest South Asians in NJ [85,86]. Individuals who preferred using their native South Asian language instead of English and those not comfortable using digital technology to join virtual rooms would not have participated in our study. Due to pandemic-related budgetary limitations, we were unable to translate study material to multiple South Asian languages and recruit multi-lingual staff. However, with the pandemic now officially declared over, future research can consider conducting the study in multiple languages and as in-person interactions without requiring the use of digital technology.

Our study participants had high educational attainment. Snowball sampling could have led to participants having similar demographics. South Asian Americans are a diverse population and have varying sociodemographic status, including less than high school education; nearly 10% of this population lives under poverty and around 12% are undocumented [87]. Alternative strategies such as partnering with cultural gatekeepers should be pursued in future studies to engage this subpopulation who may otherwise remain invisible for research.

Facebook is used widely by South Asian Americans [88]. However, we did not place _targeted Facebook ads due to infodemic concerns and budgetary limitations. Instead, we encouraged community organizations to post our study flyer in their community-focused Facebook groups. However, only those community members who engage with these Facebook groups would see the study information. Future research can pursue _targeted Facebook ads and compare the resulting recruitment and retention with those based on posting in community-focused Facebook groups to examine the benefits of _targeted ads and the characteristics of participants recruited through this approach.

Conclusion

In this paper, we have described our experiences and lessons learned in community-based recruitment of South Asian Americans to the SABCa study in NJ during the COVID-19 pandemic. We began the study by partnering with various community organizations. However, we had to pivot to alternative strategies such as advertising through a community radio station and leveraging Rutgers Co-op’s community network and online health program. Using culturally tailored outreach approaches, trust in the community radio and Rutgers Co-op, position of the staff of these organizations as credible cultural brokers in the community, and family dynamics were among the facilitators for recruitment and retention of participants. Our study can inform strategies for recruiting understudied populations to research studies even beyond the pandemic. Future studies can consider additional strategies, over and above partnering with the community radio and community-focused health programs, to recruit South Asian American participants from more diverse demographic subgroups.

Supporting information

S1 Fig. The South Asian breast cancer (SABCa) study flyer.

The watermark shows heaps of spices commonly used South Asian cuisines. The yellow colors represent turmeric, a commonly used spice. The red color in the border and horizontal lines represent powdered chili, a commonly used spice, and also represent henna and vermillion, which are commonly used for cosmetic needs in the South Asian culture. The phrase “VISIT: SAQHE Group Discussion” gave a link to a Rutgers-approved Qualtrics survey page where interested individuals could provide their contact information (phone number and email address) so that study staff could contact them.

(TIF)

Click here for additional data file. (5.5MB, tif)
S2 Fig. Radio script.

This IRB-approved script was used to disseminate the study information through the community radio.

(TIF)

Click here for additional data file. (249.6KB, tif)

Acknowledgments

The authors thank the study participants, the community-based organizations, and the community radio.

Data Availability

The data that support the findings of this paper are available upon reasonable request and with the approval of Rutgers University Institutional Review Board (IRB Pro2020002217). The data are not publicly available as it contains information that could compromise the privacy of research participants. Given that participants are women of South Asian origin living in the US, and the dataset contains their county of residence and age, making the data available can risk the possibility of participants being identified. Please see more information here: https://policies.rutgers.edu/10011-currentpdf. Please contact the lead author (Jaya M. Satagopan; satagopj@sph.rutgers.edu) as well as Rutgers University’s Institutional Review Board (IRBOffice@research.rutgers.edu) with any request for data access.

Funding Statement

The authors received no specific funding for this work.

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Decision Letter 0

Erika Bonnevie

9 May 2023

PONE-D-23-05763Lessons learned from community-based recruitment for the south Asian breast cancer study during the COVID-19 pandemicPLOS ONE

Dear Dr. Satagopan,

Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process.

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Reviewers' comments:

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Comments to the Author

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Reviewer #1: Partly

Reviewer #2: Partly

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2. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #1: N/A

Reviewer #2: I Don't Know

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3. Have the authors made all data underlying the findings in their manuscript fully available?

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Reviewer #1: No

Reviewer #2: Yes

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4. Is the manuscript presented in an intelligible fashion and written in standard English?

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Reviewer #1: Yes

Reviewer #2: Yes

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5. Review Comments to the Author

Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters)

Reviewer #1: Title Main title:

• There is no indication of where the study was conducted; the way it is stated it would imply that the study was conducted in South Asia

• Authors should modify the title to give idea of the study location

Abstract Methods: Authors should state the category of people recruited and where (location) the recruitment covered

• The study design, number of participants should also be mentioned

Results:

• On line 30, authors stated that they wanted to “gain insights into breast cancer-related health attitudes of South Asian American”, however there is no single figure in the result regarding breast cancer health related attitudes of the women; the result mainly focused on awareness of the women on the study and their sources of information.

• Authors should re-write the result section in line with the aim of the study, otherwise they will need to modify the study title in line with what they presented (i.e. awareness on the breast cancer study on sources of information)

Conclusion: Does not appear to be based on your objectives; kindly modify it to capture your objectives

Key words:

• Authors did not provide any keyword; kindly provide at least 3-5 keywords

Introduction 1. There is need for authors to fragment the 1st paragraph (line 54-85) into different paragraphs as new ideas are introduced

2. Authors did not provide information regarding breast cancer-related health attitudes attitude of women as reported in other studies; this will give insight into the burden of the problem, since it is part of the objectives of the study

3. Rationale/aim of the study should be taken towards the end of the introduction (preferable last paragraph)

4. There is need to show the various nuanced approaches used in different parts of the globe as reported in similar studies

Methodology Study area:

• Authors should begin this section with description of the study area

Study population:

• Authors need to state the study population before describing the eligibility criteria

•

Study design:

• Kindly state the study design used

Instrument of data collection:

• Authors did not describe the instrument of data collection; they should kindly state and describe the instrument used for the data collection

Data source and collection:

• Authors said they used FGD, however, there is no description of the FGD that was conducted, what categories of participants constituted each focus group, were the groups homogenous? Etc Authors need to provide more information on these issues

Recruitment method:

• In line 133, the authors said snowball sampling was used to recruit participants, however, in line 134/135 they said passive sampling….was used; there is need for clarification.

• If snowball sampling was used, what was the rationale behind that?

Fig 1. Timeline of community engagement strategies.

• No figure shown in the manuscript; what authors presented as figure (last page) looks more like a table rather than figure

Community organizations

• The detail description of the organizations given by authors is not necessary as they are not the focus of the study

Community-focused health education events

• This sub-heading gives the impression that the study was an intervention study (educational intervention); authors may need to concentrate on describing methods related to attaining the objectives of their study

Sample size:

• Authors said they sought to recruit 18 to 32 eligible participants to conduct 3 to 4 focus groups; authors should state the actual number of participants recruited and the number of FGD groups since the study has been conducted already

• For a qualitative research that adopted FGD as the only method of data collection, optimal number of FGDs to be conducted is determined by data saturation rather than a predetermined number set by the researcher.

Statistical analysis:

• The description given by authors gives the impression that quantitative data analysis was done. If that was the case, the sample size is too small and there would be need to show the formula that was used to calculate the sample size

• Authors did not describe how the FGD was analysed; was it narrative synthesis or it was using software such Nvivo etc?

•

Results Result:

• Most part of the result concentrated on describing participants’ characteristics rather than providing information on the objectives of the study

• No result for the FGD?

Lessons learned

• From the list of lessons learned, it is clear the research focused communication/community engagement strategies rather than breast cancer-related attitude of women

Discussion

Conclusion/recommendations • Authors should provide conclusion and recommendations

Abbreviations Provide meanings for some of the abbreviations used in the main text

Bibliography/References Reference list (No. 2, 25): Correct authors’ name in line with Vancouver referencing style

Reference list (No. 6,16,18,28,33): update page number (or provide web address/access date)

Reference list (No. 24): Provide place of publication

Reference list (No. 19,20,21,22,26): provide date article was accessed from the web source

Reference list (No. 38): web address provided is not accessible (remark: “page not found”)

Others Nil

Final Note The manuscript may be considered for publication after effecting corrections.

Reviewer #2: General

Do a review for grammar/ spelling. I found a few errors throughout.

The sentences that start out with brackets generally dont really need the brackets. I would remove the brackets and make sure the sentence flows well within the paragraph.

Introduction

Is there a rationale for establishing the South Asian Breast Cancer (SABCa) study in New Jersey, aside from the Rutgers location? For example, is there a large South Asian community in New Jersey? The introduction could use more information about the South Asian community in the state, especially given that it focuses so heavily on lessons learned.

In Line 78, the way it is written, it appears that “In-person meetings of community organizations were suspended” is referencing the SABCa study. I would reorganize so the introduction clearly states the problem, the population that is being studied (South Asians in New Jersey), and how community organizations/ research organizations managed the COVID pandemic

What is the reason for focusing just on Objective 1? Given the small sample size for this current paper, and the fact that Components ⅔ also were qualitative approaches, there could be good lessons learned across all components that would be suitable for a manuscript. I would rethink why the paper only focuses on Objective 1. It would be a far stronger paper if it referenced the entire project.

Methods

The authors do a thorough job of describing the methods that they eventually adopted, but there is less information on what the initial methods were, and how they decided to shift them. Given that this is an article on lessons learned, I would like to see more information in the methods on how they changed approaches, and why. This one of my largest issues with the paper.

There is a need for more information on how outreach efforts were tailored to reach South Asians specifically. For example, was outreach done in just English?

Did the authors think about doing Facebook ads or doing social media outreach, outside of the cultural, religious, health screening, and health service organizations? If not, why? Does this group not use social media? This seems like an easy way to advertise to a wide group during a time when people were spending a lot of time on the internet.

Results

The results focus mostly on demographics and aren’t particularly compelling, particularly given the small sample size. I understand that the focus of this paper isn’t to review the results of the study, but is more a reflection on the process, but as-is, the results seem like they can be removed entirely without affecting much. I would think through what other information you can provide about the study or recruitment methods to give the results section a more interesting angle.

Lessons Learned

There is a lot of information here that I would like to see in the methods. For example, lines 297-305 should be put in the methods section. This is similar throughout this section.

Lines 305-306 - I would like to see a lot more information on this piece - specifically culturally aligned approaches. That is the crux of this paper, but I dont see a lot of information on this aspect, except for here.

In general, the conclusions section feels more like a methods section. The conclusions section should reflect on the types of research out there on community recruitment, trusted messengers, etc.

Conclusions

This is where authors bring in some outside research, but it’s buried at the end of the lessons learned section, which feels more like a methods section to me.

The conclusions section smushes too many ideas into a paragraph, when they should be separated, and discussed as the lessons learned. For example, the paragraph starting on line 395 has the multiple competing ideas about recruitment in one paragraph - when the entire article is about recruitment, and these should be broken up into multiple different paragraphs, with a clear “lesson learned,” reflection on the authors’ own work, and what has already been published. There are opportunities to think broadly about health communications and how they have changed since COVID (which is purportedly the point of the article), but I dont get much of that in the conclusions, or throughout.

What was the messaging that was used to recruit people? This sentence in the conclusions brings up a good point that is not address in the methods. Having a sample image of recruitment materials would be helpful to show the specific messages that were used, and how they were tailored to reach South Asian audiences: “willingness to improve health and contribute towards scientific knowledge and society at large encouraged South Asian participation in research”

Limitations

The paper needs a stronger limitations section. There are general references to limitations sprinkled throughout, but it needs a condensed paragraph focusing just on the limitations. There are several that require addressing. The biggest ones that I can think of: 1) Language - it seems like everything was done in English, so you are missing people who don’t speak English and are likely to be more vulnerable. In line 415-416, you make it seem like this was something that happened to you - when in fact, this was eligibility criteria. 2) Educational background - The biggest issue to me is that 68% of the participants had master’s, professional, or doctoral degree - that seems way out of proportion for the actual study population that you are trying to reach.

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Reviewer #1: Yes: Dr Habibullah Adamu

Reviewer #2: No

**********

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Attachment

Submitted filename: PlosOne -Lessons learnt from community based recruitment --Reviewer comment.docx

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PLoS One. 2023 Nov 13;18(11):e0294170. doi: 10.1371/journal.pone.0294170.r002

Author response to Decision Letter 0

4 Oct 2023

Response to reviewers is attached as a word document. It is copied and pasted below as well.

Responses to comments from Reviewer 1

Title

Main title:

• There is no indication of where the study was conducted; the way it is stated it would imply that the study was conducted in South Asia

• Authors should modify the title to give idea of the study location

We conducted this study in New Jersey, USA. We have now modified the title to indicate the study location. The revised title of our paper is: “Experiences and lessons learned from community-based partnerships in recruitment for the South Asian breast cancer (SABCa) study in New Jersey during the COVID-19 pandemic”.

Abstract

Methods: Authors should state the category of people recruited and where (location)

the recruitment covered

• The study design, number of participants should also be mentioned

We have revised the abstract as recommended.

Results:

• On line 30, authors stated that they wanted to “gain insights into breast cancer-related health attitudes of South Asian American”, however there is no single figure in the result regarding breast cancer health related attitudes of the women; the result mainly focused on awareness of the women on the study and their sources of information.

There are considerable data gaps and knowledge gaps regarding breast cancer-related health of South Asian American women. To fill these gaps, we established the South Asian Breast Cancer study in New Jersey during early 2020 to gain insights into breast cancer-related health attitudes of South Asian American women by partnering with the community. In this paper, we focus only on study recruitment (and not on the breast cancer-related health attitudes) for the South Asian Breast Cancer study in New Jersey using community partnerships. Therefore, we describe the approaches we used, and lessons learned during such recruitment. To clarify this, we have now included a new paragraph (second paragraph) on page 6 (lines 113-120) in the Introduction section of the revised paper.

Authors should re-write the result section in line with the aim of the study, otherwise they

will need to modify the study title in line with what they presented (i.e. awareness on the

breast cancer study on sources of information)

The goal of this paper is to describe our experience and lessons learned during community-based recruitment for the South Asian Breast Cancer study in New Jersey during the COVID-19 pandemic. Therefore, our revised title and the results section are in line with the aim of our paper.

Conclusion:

Does not appear to be based on your objectives; kindly modify it to capture your

Objectives

The goal of this paper is to describe our experiences and lessons learned during community-based recruitment for the South Asian Breast Cancer study in New Jersey during the COVID-19 pandemic. The abstract conclusion of our revised paper is in line with this aim.

Key words:

• Authors did not provide any keyword; kindly provide at least 3-5 keywords

The journal’s instruction for submission does not ask us to provide keywords. Hence, we did not include keywords in our previous submission. We have provided a few keywords in this revision.

Introduction

1. There is need for authors to fragment the 1st paragraph (line 54-85) into different paragraphs as new ideas are introduced

We have now fragmented the introduction section into different paragraphs as suggested.

2. Authors did not provide information regarding breast cancer-related health attitudes attitude of women as reported in other studies; this will give insight into the burden of the problem, since it is part of the objectives of the study

In the revised paper, we have referred to other research works about breast cancer-related health attitudes of women in the Introduction section. We summarize the key studies in the paragraph “Breast cancer is a growing concern …” in the Introduction section. Several studies have examined motivators and barriers to breast cancer screening practices of South Asian women from the UK and Canada. Corresponding studies of South Asian American women remain limited.

3. Rationale/aim of the study should be taken towards the end of the introduction (preferable last paragraph)

We have now moved the objective to the end of the introduction section.

4. There is need to show the various nuanced approaches used in different parts of the globe as reported in similar studies

We have now briefly discussed approaches used for recruitment of South Asian Americans in similar studies in the Introduction section (lines 134-136). In the Discussion section, we refer to publications that have used various approaches to recruit individuals from diverse race/ethnicity in pages 24 and 25 (lines 504-522) and in the first paragraph of page 28 (lines 585-598).

Methods

Authors should begin this section with description of the study area

We now provide the study area at the beginning of the Methods section in the line “Recruitment was done locally …”. We have also included a paragraph in the Introduction section to summarize a rationale for conducting the study in Rutgers University – please see paragraph “A vast majority of …”.

Authors need to state the study population before describing the eligibility criteria

We now provide the study population as the first sentence of the Methods section before describing the eligibility criteria in this revision.

Kindly state the study design used

We now provide a short subsection called Study Design in the Methods section (page 8, lines 169-170), where we indicate that we used a cross-sectional design and collected data from participants at a single time point.

Authors did not describe the instrument of data collection; they should kindly state and

describe the instrument used for the data collection

We have provided a subsection called “Participant survey” under the Methods section, where we describe the instrument of data collection (pages 15 and 16, lines 342-349). Briefly, we administered a structured survey hosted on a Rutgers-approved Qualtrics® platform. We administered the survey through a Rutgers-approved virtual platform at a mutually agreed date and time between the participant and the research staff.

Authors said they used FGD, however, there is no description of the FGD that was

conducted, what categories of participants constituted each focus group, were the groups

homogenous? Etc Authors need to provide more information on these issues

In this paper, we focus only on the recruitment for the South Asian Breast Cancer study in New Jersey using community partnerships. Therefore, the objective of this paper is to describe the recruitment approaches that we used, and lessons learned during such recruitment. Qualitative analyses, including composition of focus groups will be the main focus of another subsequent paper. This is stated in page 6 (lines 113-120) in the Introduction section.

In line 133, the authors said snowball sampling was used to recruit participants, however, in line 134/135 they said passive sampling….was used; there is need for clarification.

We used snowball sampling strategy for our South Asian Breast Cancer Study (SABCa) study recruitment. Our recruitment method using the snowball sampling strategy was passive, meaning that interested individuals contacted the study personnel and were then enrolled if eligible. In particular, the study personnel did not actively contact individuals in the community for their interest in participating in the SABCa study. To further clarify, we have removed the words “passive sampling” in the revised manuscript.

If snowball sampling was used, what was the rationale behind that?

We used snowball sampling strategy for our study recruitment. Previous studies have effectively recruited South Asian participants using snowball sampling strategy and recommended using this strategy for recruitment of hard to reach populations such as South Asians (Kanaya et al., 2019, Journal of Clinical and Translational Science, 3:97-104). In a study of mobile health usage among Vietnamese Americans, Vu et al (2021, PLOS One, 16(8): e0256074) found snowball sampling to be a successful recruitment method. We have added these citations to provide rationale for snowball sampling for our study in the revised manuscript.

Fig 1. Timeline of community engagement strategies.

• No figure shown in the manuscript; what authors presented as figure (last page) looks more like a table rather than figure

We changed “Figure 1” to ‘Table 1” in the revised manuscript.

Community organizations

• The detail description of the organizations given by authors is not necessary as they are not the focus of the study

We have made considerable modifications to the manuscript to incorporate this suggestion from this reviewer. Further, since the goal of this paper is to describe various community-based recruitment approaches and lessons learned from those approaches for the SABCa study, we have included description of community organizations. We have summarized our recruitment approaches under subheadings “South Asian community-based organizations”, “Broadcast media (radio)”, “Rutgers-facilitated community outreach”, and “Snowball sampling”.

Community-focused health education events

• This sub-heading gives the impression that the study was an intervention study (educational intervention); authors may need to concentrate on describing methods related to attaining the objectives of their study

We have edited this sub-heading. In the revised manuscript, we have a subheading “Rutgers-facilitated community outreach” where we clarify that our study information was disseminated through community-focused health education events of Rutgers Co-op and through community networks of Rutgers Co-op.

Sample size:

• Authors said they sought to recruit 18 to 32 eligible participants to conduct 3 to 4 focus

groups; authors should state the actual number of participants recruited and the number of FGD groups since the study has been conducted already

In qualitative studies that use focus groups, data saturation is certainly the gold standard approach for determining the number of focus groups and, thus, the total number of individuals in a study. By definition, saturation can be determined only during or after data analysis. Analysis of the focus group transcripts are ongoing at the time of writing this revised manuscript and response to reviewers. These ongoing analyses indicate that saturation was reached with the sample size of 22 participants enrolled to our study.

For a qualitative research that adopted FGD as the only method of data collection, optimal number of FGDs to be conducted is determined by data saturation rather than a predetermined number set by the researcher.

We agree. Our _target sample size was motivated by the qualitative methods literature. We include this in page 9 of the revised manuscript.

The description given by authors gives the impression that quantitative data analysis was done. If that was the case, the sample size is too small and there would be need to show the formula that was used to calculate the sample size

Qualitative analysis of focus groups and interviews, and recruitment of healthcare professionals and South Asian women with breast cancer are not the focus of this paper. In this paper, we focus only on the recruitment of women without a prior diagnosis of breast cancer for the South Asian Breast Cancer study focus groups in New Jersey using community partnerships. We have stated this in page 6 (lines 113-120) in the Introduction section.

Authors did not describe how the FGD was analysed; was it narrative synthesis or it was

using software such Nvivo etc?

This was addressed as a prior reply to the reviewer’s comment. The objective of this paper is to describe the approaches used and lessons learned during community-based recruitment of South Asian Americans during the COVID-19 pandemic. Qualitative analyses of the focus groups will be the main focus of another subsequent paper. We have described this in page 6 (lines 113-120) in the Introduction section.

Results:

• Most part of the result concentrated on describing participants’ characteristics rather than providing information on the objectives of the study

• No result for the FGD?

As mentioned in the responses to prior comments, the objective of this paper is to describe our experiences and lessons learned during community-based recruitment of South Americans during the COVID-19 pandemic. We recruited these participants to conduct focus group discussions. However, in this paper, we focus on describing recruitment results. Analysis and results of focus group discussions will be reported in a future paper. We explain the focus of our paper in page 6 (lines 113-120) in the Introduction section.

Lessons learned

• From the list of lessons learned, it is clear the research focused communication / community engagement strategies rather than breast cancer-related attitude of women.

The primary goal of the SABCa study is to gain insights into breast cancer-related attitude of South Asian American women. To this end, we had to recruit participants by partnering with the South Asian American community in New Jersey. As described above, in this paper, we describe our experiences and lessons learned during community-based recruitment of South Americans during the COVID-19 pandemic. This paper contributes to a scant body of literature on this topic and lessons learned that we describe may be useful to other researchers. Analysis and results of focus group discussions will be reported in a future paper. Hence, our lessons learned relate to our community engagement strategies.

Discussion

Conclusion / recommendations. Authors should provide conclusion and recommendations.

We have included a Conclusion section in the revised paper.

Abbreviations. Provide meanings for some of the abbreviations in the main text.

We elaborate our abbreviation when it used first. The following abbreviations are described:

United States (US) in page 4

New Jersey (NJ) in page 4

United Kingdom (UK) in page 5

The South Asian Breast Cancer (SABCa) study in page 5

California (CA) in page 6

Rutgers Co-operative (Rutgers Co-op) in page 10

Rutgers Cancer Institute of New Jersey Community Outreach and Engagement (CINJ COE) in page 10

Standard Deviation (SD) in page 19

Bibliography / References

References list (No. 2, 25): Correct authors’ name in line with Vancouver referencing style

We have reformatted the author’s name for reference number 2 [Hoeffel et al].

For reference 25 [reference 4 in the revised manuscript], the author is the organization “Jersey Promise”. Hence, we have retained the author name in the reference as before.

Reference list (No. 6, 16, 18, 28, 33): update page number (or provide web address / access date)

We checked the page numbers for these references and found that they are indeed as we have provided in our reference list. For example, for reference number 6 [which is reference number 13 in the revised manuscript], the page number given by the journal is indeed pkaa005. As suggested by the reviewer, we now provide web address and the most recently cited date. We also examined the citation format in another paper published in PLoS One, and used the same approach to format our references.

Reference list (No. 24): Provide place of publication

We have included the place of publication in the revised manuscript.

Reference list (No. 19, 20, 21, 22, 26): provide date article was accessed from the web source

We have now provided our most recent date of accessing these articles. We have used the same format used in other papers published in PLoS One to include the date.

Reference list (No. 38): web address provided is not accessible (remark: “page not found”)

We verified and found that are able to access this web page from New Jersey. We do not get “page not found” note. However, in the revised manuscript, we no longer cite this web address.

Responses to comments from Reviewer 2

Introduction:

Is there a rationale for establishing the South Asian Breast Cancer (SABCa) study in New

Jersey, aside from the Rutgers location? For example, is there a large South Asian community in New Jersey? The introduction could use more information about the South Asian community in the state, especially given that it focuses so heavily on lessons learned.

Thank you for this comment. Yes, New Jersey has a large and growing South Asian population. South Asians are the largest Asian subgroup in New Jersey. A vast majority of New Jersey’s South Asians also live within reach of Rutgers University. We now provide these details in pgae 6 (lines 122-126) in the Introduction section of the revised paper.

In Line 78, the way it is written, it appears that “In-person meetings of community

organizations were suspended” is referencing the SABCa study. I would reorganize so the introduction clearly states the problem, the population that is being studied (South Asians in New Jersey), and how community organizations/ research organizations managed the COVID Pandemic.

We have now edited this sentence in the Introduction of the revised paper. This sentence is now rewritten as “The South Asian community organizations in NJ suspended their in-person meetings and events due to lock downs and social distancing requirements”. We have also reorganized the Introduction section considerably as recommended by this reviewer.

What is the reason for focusing just on Objective 1? Given the small sample size for this

current paper, and the fact that Components 2 / 3 also were qualitative approaches, there could be good lessons learned across all components that would be suitable for a manuscript. I would rethink why the paper only focuses on Objective 1. It would be a far stronger paper if it referenced the entire project.

Component 1 uses community-based recruitment methods, while component 2 recruits by partnering with the NJ State Cancer Registry and component 3 recruits healthcare professionals from Rutgers hospitals. Our study focuses on our experiences and lessons learned from community-based recruitment. Hence, we focus on Component 1. We have now described this in the Introduction section of the revised paper. Please see the paragraph “Therefore, we established …”

Methods:

The authors do a thorough job of describing the methods that they eventually adopted, but there is less information on what the initial methods were, and how they decided to shift them. Given that this is an article on lessons learned, I would like to see more information in the methods on how they changed approaches, and why. This one of my largest issues with the paper.

We now provide these details in the Introduction section. Please see the paragraph “Several studies have recommended …” in the Introduction. If this study were to be conducted in a pre-pandemic era, recruitment methods would typically involve attending community-based events to disseminate information about the study and recruit participants. However, since community-based events were suspended due to the COVID-19 pandemic, we had to pivot to alternative strategies. One potential possibility was advertising through social media such as Facebook. However, the pandemic was also a period of infodemic. Therefore, we had to be wary of placing advertisements about our study on social media. Hence, we used the methods described in this paper – namely, leveraging broadcast media (radio) and Rutgers-facilitated community outreach. We have described these recruitment approaches in the Materials and Methods section of the revised paper.

There is a need for more information on how outreach efforts were tailored to reach South Asians specifically. For example, was outreach done in just English?

Yes, the study outreach was done in English language only, since we did not have the resources to translate study materials to multiple South Asian languages, or to recruit research staff with multiple language skills. We have now added this information to the “Recruitment methods” subsection under the Materials and Methods section of the revised paper. Please see sentence “Study outreach efforts were done in English language only …”.

Did the authors think about doing Facebook ads or doing social media outreach, outside of the cultural, religious, health screening, and health service organizations? If not, why? Does this group not use social media? This seems like an easy way to advertise to a wide group during a time when people were spending a lot of time on the internet.

No, we did not use social media for the SABCa study due to the misinformation that was being spread about science and health during the COVID-19 period. Therefore, we decided to not pursue recruitment by placing advertisements through social media. However, we did encourage the community-based organizations to share the study information through their social media groups. We also established a Qualtrics survey, where interested individuals could submit their contact info for us to contact them for the study, and we included a link to the Qualtrics survey in our study flyer. But we found that this page was being populated by bots and not bona fide individuals.

Results

The results focus mostly on demographics and aren’t particularly compelling, particularly given the small sample size. I understand that the focus of this paper isn’t to review the results of the study, but is more a reflection on the process, but as-is, the results seem like they can be removed entirely without affecting much. I would think through what other information you can provide about the study or recruitment methods to give the results section a more interesting angle.

We have made considerable revisions to the manuscript to address various comments from the two reviewers. We describe various community engagement strategies that we pursued and explain that we had to pivot to community-based recruitment by partnering with a community radio and Rutgers-facilitated community outreach program. Following these descriptions, we feel that it will be important to describe the demographic characteristics of the participants that we were able to recruit. To this end, we are retaining the results giving a summary of the participant characteristics and hope that this reviewer will support this. We have now moved the lessons learned section as a subsection of the Results section as a way to give a relevant angle since our paper is about experiences and lessons learned from our community-based recruitment efforts of South Asian Americans during the COVID-19 pandemic.

Lessons Learned

There is a lot of information here that I would like to see in the methods. For example, lines 297-305 should be put in the methods section. This is similar throughout this section.

We have made considerable changes to the manuscript by moving many materials from the Lessons Learned section to the Materials and Methods section of the paper, as suggested by the reviewer. We have included these details within the “South Asian community-based organizations” and “Broadcast media (radio)” subsections of the Materials and Methods section.

Lines 305-306 - I would like to see a lot more information on this piece - specifically

culturally aligned approaches. That is the crux of this paper, but I dont see a lot of information on this aspect, except for here.

Our culturally aligned approaches occur through 3 ways: (1) study flyer; (2) delivery of radio script; and (3) cultural concordance of study staff.

In the revised paper, we have included a subsection called “Study flyer” within the Materials and Methods section, where we describe how our study flyer is culturally aligned with the South Asian culture. We have also included the study flyer as a supplementary material.

We have included a paragraph “The radio script to promote …” in the “Broadcast media (radio)” subsection of the Materials and Methods section to describe how the radio script was delivered in a culturally aligned manner. The radio script is also included as a supplementary material.

In the “Participant registration” subsection of the Materials and Methods section, we now highlight that the first 3 authors are women of South Asian origin and, thus, have cultural concordance with the study participants.

In general, the conclusions section feels more like a methods section. The conclusions section should reflect on the types of research out there on community recruitment, trusted messengers, etc.

We have made substantial revisions to the Materials and Methods and Discussion sections. We have now included a Conclusion section, as suggested by the reviewer.

Conclusions

This is where authors bring in some outside research, but it’s buried at the end of the lessons learned section, which feels more like a methods section to me.

To address this, we have made considerable revisions to the Materials and Methods section and Discussion section, and included a new Conclusion section.

The conclusions section smushes too many ideas into a paragraph, when they should be

separated, and discussed as the lessons learned. For example, the paragraph starting on line 395 has the multiple competing ideas about recruitment in one paragraph - when the entire article is about recruitment, and these should be broken up into multiple different paragraphs, with a clear “lesson learned,” reflection on the authors’ own work, and what has already been published. There are opportunities to think broadly about health communications and how they have changed since COVID (which is purportedly the point of the article), but I dont get much of that in the conclusions, or throughout.

We have made several changes to our manuscript to address these helpful points. First, we moved several sentences or concepts from the previous Discussion section into the current Materials and Methods section. Second, we moved the “Lessons Learned” into the Results section of the revised manuscript. We also revised the “Lessons Learned” section to reflect on our own work. Finally, we rewrote our Discussion section to reflect more on our work. In rewriting the Discussion section, we used the paper by Vu et al (2021, PLOS One, 16(8): e0256074) as a template and role model for structuring our revised Discussion section.

What was the messaging that was used to recruit people? This sentence in the conclusions brings up a good point that is not address in the methods. Having a sample image of recruitment materials would be helpful to show the specific messages that were used, and how they were tailored to reach South Asian audiences: “willingness to improve health and contribute towards scientific knowledge and society at large encouraged South Asian participation in research”

We now provide the study flyer and radio script as Supplementary Materials so share our study’s messaging with the readers of our paper. In the revised paper, we have also included how our participation in a radio talk show helped listeners to hear directly from us, which helped us build better connections with the community. We describe this in the first “Lessons learned” subsection within the Results section.

Limitations

The paper needs a stronger limitations section. There are general references to limitations sprinkled throughout, but it needs a condensed paragraph focusing just on the limitations. There are several that require addressing. The biggest ones that I can think of: 1) Language – it seems like everything was done in English, so you are missing people who don’t speak English and are likely to be more vulnerable. In line 415-416, you make it seem like this was something that happened to you - when in fact, this was eligibility criteria. 2) Educational background - The biggest issue to me is that 68% of the participants had master’s, professional, or doctoral degree - that seems way out of proportion for the actual study population that you are trying to reach.

We have now included a Limitations section in our revised paper where we have collected the limitations sprinkled throughout the paper under one section. We have also highlighted that English is an eligibility criterion and that we did not advertise through Facebook, and list these as among the Limitations of the paper. We have also included the high educational background of the participants in the limitation and note that English language requirement as a potential reason for the high educational background. In addition, we also summarize a history of South Asians in the U.S and point to some aspects of the history in relation to the educational background. In the Limitation section, we now note the need to expand the study in the future by including South Asian languages and by partnering with diverse community organizations, especially now that we are in a post-pandemic time.

Responses to Journal Comments:

Please ensure that your manuscript meets PLOS ONE's style requirements, including those for file naming.

We have carefully reviewed our entire manuscript to ensure that it meets PLOS ONE’s style requirements and file naming.

In your Data Availability statement, you have not specified where the minimal data set

underlying the results described in your manuscript can be found.

We are including the following Data Availability statement as part of our online submission:

The data that support the findings of this paper are available upon reasonable request and with the approval of Rutgers University Institutional Review Board (IRB Pro2020002217). The data are not publicly available as it contains information that could compromise the privacy of research participants. Given that participants are women of South Asian origin, and the dataset contains their county of residence and age, making the data available can risk the possibility of participants being identified. Please see more information here: https://policies.rutgers.edu/10011-currentpdf. Please contact the lead author (Jaya M. Satagopan; satagopj@sph.rutgers.edu) as well as Rutgers University’s Institutional Review Board (IRBOffice@research.rutgers.edu) with any request for data access.

Please include your full ethics statement in the ‘Methods’ section of your manuscript file. In your statement, please include the full name of the IRB or ethics committee who approved or waived your study, as well as whether or not you obtained informed written or verbal consent. If consent was waived for your study, please include this information in your statement as well.

In the Materials and Methods section, we have included the full name of the IRB: “The Rutgers University Institutional Review Board (IRB) approved the study.”

All study participants provided written informed consent through an electronic platform. We have included a sentence stating this: “All study participants provided electronic written informed consent through a Rutgers-approved secure Docusign® platform.”

Attachment

Submitted filename: responses-to-reviewer-comments.docx

Click here for additional data file. (43KB, docx)

Decision Letter 1

Erika Bonnevie

27 Oct 2023

Experiences and lessons learned from community-engaged recruitment for the South Asian breast cancer study in New Jersey during the COVID-19 pandemic

PONE-D-23-05763R1

Dear Dr. Satagopan,

We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements.

Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication.

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Kind regards,

Erika Bonnevie

Academic Editor

PLOS ONE

Additional Editor Comments (optional):

Reviewers' comments:

Authors have addressed concerns and the paper is much stronger. I would suggest doing a general grammar review.

Acceptance letter

Erika Bonnevie

5 Nov 2023

PONE-D-23-05763R1

Experiences and lessons learned from community-engaged recruitment for the South Asian breast cancer study in New Jersey during the COVID-19 pandemic

Dear Dr. Satagopan:

I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now with our production department.

If your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information please contact onepress@plos.org.

If we can help with anything else, please email us at plosone@plos.org.

Thank you for submitting your work to PLOS ONE and supporting open access.

Kind regards,

PLOS ONE Editorial Office Staff

on behalf of

Dr. Erika Bonnevie

Academic Editor

PLOS ONE

Associated Data

    This section collects any data citations, data availability statements, or supplementary materials included in this article.

    Supplementary Materials

    S1 Fig. The South Asian breast cancer (SABCa) study flyer.

    The watermark shows heaps of spices commonly used South Asian cuisines. The yellow colors represent turmeric, a commonly used spice. The red color in the border and horizontal lines represent powdered chili, a commonly used spice, and also represent henna and vermillion, which are commonly used for cosmetic needs in the South Asian culture. The phrase “VISIT: SAQHE Group Discussion” gave a link to a Rutgers-approved Qualtrics survey page where interested individuals could provide their contact information (phone number and email address) so that study staff could contact them.

    (TIF)

    Click here for additional data file. (5.5MB, tif)
    S2 Fig. Radio script.

    This IRB-approved script was used to disseminate the study information through the community radio.

    (TIF)

    Click here for additional data file. (249.6KB, tif)
    Attachment

    Submitted filename: PlosOne -Lessons learnt from community based recruitment --Reviewer comment.docx

    Click here for additional data file. (21.6KB, docx)
    Attachment

    Submitted filename: responses-to-reviewer-comments.docx

    Click here for additional data file. (43KB, docx)

    Data Availability Statement

    The data that support the findings of this paper are available upon reasonable request and with the approval of Rutgers University Institutional Review Board (IRB Pro2020002217). The data are not publicly available as it contains information that could compromise the privacy of research participants. Given that participants are women of South Asian origin living in the US, and the dataset contains their county of residence and age, making the data available can risk the possibility of participants being identified. Please see more information here: https://policies.rutgers.edu/10011-currentpdf. Please contact the lead author (Jaya M. Satagopan; satagopj@sph.rutgers.edu) as well as Rutgers University’s Institutional Review Board (IRBOffice@research.rutgers.edu) with any request for data access.

    Articles from PLOS ONE are provided here courtesy of PLOS

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