Developing Personas and Empathy Maps to Understand Perceptions of HPV Self-Sampling in the Somali American Community

Abstract

Objectives:

Cervical cancer is preventable through regular screening, yet Somali American women face significant barriers that contribute to low screening rates and delayed diagnoses. This study explored Somali American women’s perceptions of cervical cancer screening and human papillomavirus (HPV) self-sampling using the Social Ecological Model (SEM) and human centered design principles of creating personas and empathy maps to better understand screening experiences.

Methods:

We conducted a secondary analysis of six focus groups involving 44 Somali American women (aged 30–65) in Minnesota. This analysis explored their knowledge, experiences, and decision-making processes around cervical cancer screening and HPV self-sampling. In order to explore a complementary perspective on participant experience, we then developed six personas and empathy maps.

Results:

At the individual level, participants demonstrated limited knowledge and varied attitudes, with screening preferences shaped by past Pap smear experiences and a burgeoning interest in self-sampling. Interpersonally, the influence of healthcare providers and peer support emerged as critical factors. Communally, cultural and societal norms significantly impacted overall screening behavior. We identified six personas ranging from the Unfamiliar Individual to the Proactive Screener, to capture specific behaviors and needs related to HPV self-sampling.

Conclusions:

This study highlights the diverse experiences, beliefs, and barriers that Somali American women face regarding cervical cancer screening and HPV self-sampling. The Socio-Ecological Model in combination with developing personas and empathy mapping, offers an approach to consider the broad range of patient experiences and the need for tailored strategies to address the diverse needs within this group.

Practice implications:

The use of personas and empathy mapping offers a way to consider the broad range of patient experiences and could translate into clinical practice to support providers identifying a range of strategies to meet the diverse needs of community members and thoughtfully address screening disparities.

Introduction

Cervical cancer continues to impact many women globally,¹ despite the potential availability of highly effective human papillomavirus (HPV) vaccination and screening with Papanicolaou (Pap) and HPV tests for prevention. Around 13,000 patients are diagnosed with cervical cancer in the United States annually,² and often women who receive this diagnosis were not up to date with recommended screening.^3–5 Regular screening is the most effective strategy for identifying and treating precancerous lesions and early-stage cervical cancer.⁶ Screening methods have evolved, with current guidelines recommending HPV-only testing as a preferred or equivalent strategy over Pap-only or Pap and HPV co-testing.^7,8 HPV-only testing has greater sensitivity than Pap testing for detecting cervical precancer and offers an advantage in being able to be accurately collected by patients or clinicians.^9–11 Patients being able to collect their own HPV sample may also bring benefits of privacy and autonomy for patients, and reduce the need for pelvic examinations.^12,13 HPV self-collected testing is becoming increasingly common globally, and was approved by the United States Food and Drug Administration in 2024.^14,15

Despite the advances in cervical cancer screening approaches, persistent and troubling disparities remain. Somali American women experience particularly challenging disparities, with only one-quarter to one-half of Somali American women being up-to-date with guideline-recommended screening.^16–18 These disparities are worse for older women and more recent immigrants.^19,20 The Socio-Ecological Model (SEM)²¹ provides a comprehensive framework for examining how health behaviors are simultaneously shaped by individual, interpersonal, and community factors. Applying the SEM provides the foundation for an exploration of the intersecting and overlapping influences, such as personal beliefs, provider relationships, cultural norms, and community dynamics that likely impact decision-making around cervical cancer screening for Somali American women.

At the individual level, Somali American women may lack knowledge about HPV, cervical cancer, and the purpose of screening.^22–27 These challenges are often compounded by cultural and religious interpretations, such as views on predestination and concerns regarding modesty.^{27–28,29–32} On the interpersonal level, communication between patients and providers plays a crucial role. Somali patients describe a mistrust of healthcare providers,^23,27,32 and providers report a lack of skill or confidence to provide care to Somali women who have been circumcised.^33–36 In some cases, the absence of interpreters limits effective communication, reduces privacy, and contributes to misunderstandings.³⁷ Finally, community level factors, including systemic barriers to healthcare access and deep-seated institutional mistrust, continue to drive disparities.^23,27,32 Conversely, engaging faith-based institutions and community leaders offers a promising pathway to address misconceptions and champion cancer prevention efforts.³⁸

Much of what we know about the experience of Somali American women around cervical cancer screening to date comes from qualitative data. However, there are concerns that qualitative research, and tools such as thematic analysis, can contribute to unintended overgeneralizations about specific populations.³⁹ Alternative approaches, such as the development of personas and use of empathy maps in human centered design (HCD), could offer an alternative approach to consider varied patient experiences and perspectives. Personas are hypothetical representations of patients or user experiences, and can be developed from a variety of sources, or even co-developed with patients.^40,41 They are intended to engage thinking about the whole person, patient, or individual, and consideration of the many different types of experiences within a group.⁴¹ Personas can be used to inform empathy maps, which are a tool to foster reflection on what each persona might think, feel, do or say, with the intention of fostering empathetic engagement with various perspectives.^42–44 The use of personas and empathy maps could help inform nuanced strategies for developing interventions that address disparities.⁴⁵ A potential critique of the use of personas is that they may risk decontextualizing experiences from broader social factors, and that in reflecting on multiple dimensions of experience (what people think, feel, do or say), they are tools that can be overly interpretive.

The Isbaar Project implemented and tested the use of HPV self-sampling for patients in primary care, with an emphasis on increasing cervical cancer screening rates for Somali American patients.^46,47 As part of the study, pre-implementation focus groups were conducted with Somali American patients to elicit their views of HPV self-sampling and their experiences with cervical cancer screening.⁴⁸ We conducted a secondary analysis of the focus group data focused on two aims. First, drawing on the SEM, we conducted a thematic analysis to identify the individual-, interpersonal-, and community-level drivers of cervical cancer screening and HPV self-sampling among Somali American women. The goal of this analysis was to provide a broad context of participant experiences. Second, we examined these data to develop human centered design-informed personas and empathy maps. Overall, our goal was to explore how personas can contribute to our understanding of patient experiences and use the SEM to contextualize the personas. The personas and empathy maps may provide healthcare providers and policymakers with a roadmap for developing culturally resonant outreach and engagement strategies tailored to varied Somali American patient experiences.

Methods

Study Design

We conducted a secondary analysis of qualitative data from the Isbaar Study, designed to assess implementation and effectiveness of a primary care-based HPV self-sampling intervention to increase cervical cancer screening.⁴⁹ The Isbaar Project had several components, including pre-implementation qualitative interviews with primary care providers⁴⁹ and focus groups with Somali American women to understand barriers and facilitators to promoting HPV self-sampling.⁴⁸ Following this, the project implemented and evaluated HPV self-sampling alongside usual care in intervention clinics and tested its impact on screening rates. Detailed results of this implementation study have been previously described.^48,49 Here we present a secondary analysis of the pre-implementation focus groups with Somali American women.

Data Collection

Six focus groups were conducted with 44 Somali American women aged 30 to 65 years and residing in Minnesota. Each group consisted of 5 to 10 participants who were recruited through flyers and by word of mouth.⁴⁸ Participants were provided with details about the study and completed consent forms. The discussions centered on the women’s knowledge about HPV and cervical cancer and experiences with cervical cancer screening, as well as the factors influencing their decision-making processes. Participants were also asked for their views on HPV self-sampling. The sessions lasted for approximately one hour and were audio-recorded, translated, and transcribed verbatim.

Data Analysis

Our approach to the data analysis consisted of two strategies. First, we conducted a thematic analysis, drawing on a constructivist approach to coding that allowed themes to emerge and enabled reflection on how the themes related to the individual-, interpersonal-, and community-level factors of the SEM.⁵⁰ NVivo software was used to assist with the coding process.⁵¹ One team member (AT) led the coding process, with frequent review and discussion with another team member (RP). The emerging analysis was presented to a broader team of researchers to further ensure analytical rigor. The analysis focused on identifying individual-, interpersonal-, and community-level experiences reflected in the SEM, with the goal of contextualizing the personas in the broader experiences of participants.

Secondly, two team members (AT, RP) drew on the transcripts to develop personas and empathy maps to share our understanding of participants’ experiences when considering cervical cancer screening and HPV self-sampling. This approach consisted of extensive review of data and key information, including in the literature, to identify key persona types that had distinct experiences or narratives.⁵² We were particularly attuned to identifying recurring patterns across the focus groups, along with considering the themes that emerged during coding. We created an empathy map for each persona based off a commonly used persona framework,⁵² that explored what participants say, think, do, and feel for each persona, to illustrate and reflect the discussions from the data that were associated with each persona. We adapted the persona development framework to include a fifth category, being community. This was added to reflect the contextual influences shaping behavior that were resonated with the SEM based analysis. As potential list of eight personas were identified through reviewing the focus group data, AT and RP reviewed and refined the emerging personas through a process of discussion and consensus building. Our process of developing the final six personas involved detailed reflection of how individual voices and experiences could be represented, merging of potential personas where appropriate and creating nuanced descriptions of each domain (what participants would say, think, do and feel), based on the data. It is important to note that the empathy maps were hypothetical representations of each persona, and were created by the research team to reflect individuals that participated in the focus groups. These personas and maps were not checked or co-developed by the participants as this was a secondary data analysis, although doing so would have added additional rigor to our methods.

Human Subjects

The University of Minnesota Institutional Review Board (IRB) provided ethical approval for the conduct of this study (STUDY00012408, SITE00001416). University of Washington IRB approval was granted through a reliance agreement with the University of Minnesota (STUDY00013359). The study is registered with ClinicalTrials.gov (NCT05453006).

Findings

Here we present the findings in three sections, the first being a description of the study participants, then findings from the thematic analysis informed by the SEM, and finally, the personas and associated empathy maps. 44 Somali American women participated in the focus groups, all were born in Somalia, and 75% had previously participated in cervical cancer screening. Participant demographics can be found in Table 1, and empathy maps in Tables 2

Table 1:

Sociodemographic Characteristics of Focus Group Participants

Characteristics (self-report)	n	%
Total	44	100
Gender
Female	44	100
Marital status
Single	4	9
Married	29	66
Divorced	4	9
Widowed	3	7
Separated	4	9
Primary Language
Somali	42	95
No response	2	5
Race
Black/African-American	44	100
Ethnicity
Somali	44	100
Country of Birth
Somalia	44	100
Years Living in the U.S.
0 – 5 years	0	0
6 – 10 years	13	30
11 – 15 years	6	14
16 – 20 years	15	34
21 – 25 years	8	18
26 – 30 years	2	5
Years of Formal Education
None	5	11
1 – 6 years	11	25
7 – 12 years	9	20
13+ years	19	43
Annual Household Income
Less than $25,000	23	52
$25,000 – $50,000	15	34
More than $50,000	5	11
Unknown	1	2
Prior Pap Test or Cervical Cancer Screening
Yes	33	75
No	11	25
Timeframe of Prior Pap Test or Screening
Within the last 5 years	25	57
Between 6 – 10 years ago	8	18
No prior screening	11	25
Has a regular primary care clinic
Yes	39	89
No	5	11

Table 2:

Personas and empathy maps, including contextual community level factors.

Persona	Description	Says	Thinks	Feels	Does	Community Level Factors
The Unfamiliar Individual	Has never heard of HPV or self-sampling and has limited knowledg e about cervical cancer, believing screening to only be necessary if there are symptoms or during pregnancy care.	“I have never screened myself, but I screened when I had a baby in 2014, I didn’t’ do anything else ” “The second time is when I had my baby” “I did not know about it” “I was not told”	I feel fine, so why would I need to get screened? I thought screening was only necessary if you were pregnant or had symptoms? I do not know anyone who talks about this, so it must not be that serious.	Confused or uncertain about what HPV is and how it relates to cervical cancer. Distrustful or skeptical if the information contradicts cultural beliefs or knowledge. Anxious or hesitant if introduced to the idea of HPV self-sampling. Hesitant to engage in screening due to a fear of medical procedures or lack of awareness.	May dismiss or ignore recommendations for screening if they do not understand the purpose. Likely does not seek out information about HPV or cancer screening. Might consider screening if a trusted person or a doctor recommends it.	Language barriers make it difficult to understand medical information. Limited access to culturally relevant information about cancer and screening. Surrounded by a community where HPV and cervical cancer are not discussed.
The Screening Hesitant Individual	Has had a negative experience with Pap tests in the past and is hesitant about all screening options, has had experience s of pain or trauma.	“I came back scared, she said you are normal, and that was the last day I did screening.” “The later one, I was having a full checkup, and they added this to it, I didn’t have a choice.” “I felt it was painful. It was unbearable to me, I don’t know about other people, but it was unbearable to me.”	The last time I had a pap smear it was painful and I don’t want to go through that again. I need more reassurance this (self-collect) method is better before I consider it. What if I do self-sampling wrong and it doesn’t work.	Distrustful of health care providers due to past negative experiences. Fearful or anxious about any form of cervical cancer screening. Conflicted – knows that screening is important but struggles with physical and emotional barriers.	Avoids or delays screening appointments, even if recommended by a provider. May ask a lot of questions or express doubts when introduced to self-sampling. Looks to alternative health information within the community to help with deciding.	If surrounded by community members or family who are supportive of screening, may be open to reconsidering. Modesty concerns, past medical mistreatment, or traditional beliefs about health may influence avoidance of screening.
The Screening Curious Individual	Interest to learn more about cervical cancer screening and would do it if there was a good reason to do so.	“This test can be stated like this and then the person may accept or will say send me to a regular doctor. That is how I see it.” “No doctor has ever talked to me about it!” “If (information about screening) is recorded like a clip and it will be sent to hear phone with pictures, that way the person will understand.”	I need to hear from someone I trust before deciding to screen. I would consider screening if my doctor strongly recommended it or if I learned more about the risks. What is the difference between a Pap test and self-sampling?	Curious but uncertain about cervical cancer screening options. Receptive to new information but still weighing the pros and cons. Open to self-sampling if it seems convenient and less invasive than a Pap test.	Considers self-sampling but may want reassurance about accuracy and safety. Listens to healthcare providers, peers or community leaders for guidance. Asks questions and seeks more information. Might compare experiences of others before committing to screen.	Social norms, peer discussion and family encouragement play a role in decision making. If trusted individuals promote screening it would be influential. May have limited exposure to healthcare providers discussing HPV or cervical cancer. A supportive provider could influence towards screening.
The Discreet Individual	The discreet participant prefers self-sampling because it offers privacy.	“This is very good. Maa’shaa’ Allah, it is good. I like this, I will do it.” “I think this is easier than the metal and so on, but if we don’t know how to use it, the results will get it wrong, so it needs to be explained how to use it.” “Pap smear causes a lot of pain, but this one is easy and will cause less pain.”	Self-sampling allows me to take care of my health, without feeling exposed or uncomfortable. This feels like a respectful and culturally appropriate option for someone like me. It’s reassuring to know I can take care of myself without compromising my comfort or modesty. I’m more likely to follow through on screening if I can do it privately at home.	Relieved that self-sampling allows them to maintain privacy and have control over health-related decisions. Anxious or uncomfortable discussing cervical cancer screening with others, including healthcare providers. Skeptical or hesitant about self-sampling accuracy, but willing to try it because it is discreet.	Chooses self-sampling over clinic-based screening due to its private and convenient care. May conduct personal research about HPV and self-sampling before deciding to participate. May delay or hesitate to seek follow up care due to concerns about privacy or potential stigma.	Avoids clinic visits and may only seek care when necessary. Prefers home health solutions that allow them to manage their care on their own terms.
The Proactive Screener	The proactive screener has routine screenings and is well informed about HPV and cervical cancer.	“Personally, I requested the screening by myself, and I normally do check-ups every six months.” “I did the test six times, the doctor explained to me what the pap smear is; she told me it is for screening the cervical cancer which is the cancer of the opening of the uterus. She told me every time it was normal.” “I have taken it before. I have seen it. I have taken it 5–6 times before.”	It’s better to be proactive and informed than to delay and face complications. Screening is normal and an important part of maintaining overall health. Following medical guidelines for screening is important for maintaining my health. Cervical cancer is preventable and early detection is key.	Reassured that regular screening helps with early detection and prevention. Encouraged by positive past screening experiences or knowledge or its benefits. Responsible for their own mental health and proactive at managing risks. Concerned for others who are unaware or hesitant about screening, possibly advocating for them.	Actively seeks information about cervical cancer prevention, HPV and new screening methods. Schedules and attends routine pap smear as recommended. Encourages family, friends or peers to get screened, sharing knowledge and resources.	Has a regular healthcare provider and feels comfortable discussing health concerns and trusts medical advice. May be engaged in other preventative health behaviors, such as vaccinations, healthy eating and routine checkups. Comfortable discussing screening with peers, family or community members and may influence others positively.
The Peer Advocate	Well informed about cervical cancer, understands the importance of screening and motivated to educate peers on the importance of screening.	“You can educate them and raise awareness by holding meetings like these, and then Somali women will spread the word to other women. Everyone will talk to their friends and neighbors and show them how it’s done.” “I will advise Somali women to go screen. We have some shyness in us, but you are in a new country, you are eating different food that you are not used to. You have to screen yourself. Allah takes life.”	If women knew how easy and important screening is, they would be more likely to participate. Many women in my community just don’t know this is something they need to do regularly. There is stigma around this topic, especially in our culture, but silence only makes it worse.	Confident and knowledgeable about cervical cancer screening. Motivated to raise awareness, particularly within their community. Empowered by their ability to educate and support others in making informed health decisions.	Actively shares information about cervical cancer, HPV and self-sampling with peers, family and community members. Encourages others to get screened by addressing fears, misconceptions and concerns. Supports hesitant individuals by sharing personal or positive screening experiences.	Understands cultural concerns about screening and tailors their advocacy to be culturally sensitive and respectful. May have contact with healthcare providers, community health workers or health organizations to stay informed and share accurate information.

Thematic Findings by SEM level

The SEM informed analysis of the focus groups discussions is presented in relation to three main areas of focus, being the individual-, interpersonal- and community-level factors that impact perceptions of screening. Here we describe the findings relating to each of these areas, along with illustrative quotes.

Individual-level factors impacting perceptions of screening

Many participants had limited awareness of HPV, cervical cancer, and the importance of regular screening, leading to misconceptions and doubts about both Pap tests and HPV self-sampling. A lack of perceived personal risk for cervical cancer further discouraged participation in screening and some considered cervical cancer screening to be necessary only during pregnancy care.

Yes, I took it after I had a baby, last year, when I was taking the check up after the baby. The doctor advised me to take it.

(Focus Group 4)

Fear and avoidance of pap tests for cervical cancer screening were also commonly expressed, due to uncertainty about the procedure, concerns about pain, and prior experiences of discomfort with the process.

I have taken it. At my first pregnancy. It felt unbearable to me. I don’t know about other people, but it was unbearable to me, you know.

(Focus Group 4)

Many participants expressed feeling uncomfortable or embarrassed discussing women’s health, especially in mixed gender settings or in public. This discomfort made it difficult for participants to seek screening. Participants also expressed concerns that screening itself might lead to disease.

Somali women were instilling doubt in me and asking me not to go; they said people are injected with diseases, you should be careful they might implant diseases in you, and because you are sick you can’t endure, don’t show your reproductive organ to doctors.

(Focus Group 2)

Prior personal experience with Pap tests strongly influenced participant attitudes toward screening, with some reporting positive interactions, while others had negative or uncomfortable experiences. Some participants mentioned past negative experiences where the process was either rushed or they were not given enough information. For those unfamiliar with Pap tests, uncertainty about the procedure could act as barrier to participation. Many expressed they would prefer HPV self-sampling due to its convenience, privacy, and perceived ease of use, making it a more acceptable alternative to clinic-based screening. Addressing screening related fears and hesitations was seen as essential to increasing screening participation, and ensuring that women feel comfortable and empowered in making screening decisions.

Interpersonal-level factors impacting perceptions of screening

Healthcare providers were described as playing a critical role in influencing screening participation, but barriers such as language differences and limited patient provider communication could negatively impact trust and understanding. Effective use of interpreters and culturally competent communication was described as helping bridge these gaps and improving women’s confidence in the screening process.

“I called an interpreter, and she told me you have to make an appointment right away. I went to the family doctor and told her ‘This is what is happening.”

(Focus Group 6)

Additionally, peer support was described as a significant factor, as participants were more likely to engage in screening when encouraged by trusted friends, family members, or community health workers. Peer-to-peer education and facilitator led discussions about self-sampling was seen as a strategy to further increase awareness and acceptance screening.

“I will advise (other) Somali women to do screening we have some shyness in us, but you are in new country, you are eating different food that you are not used to, you must screen yourself. Allah takes life. Health screening is an important thing.”

(Focus Group 1)

Community level factors impacting perceptions of screening

Cultural and religious beliefs, including modesty practices, were described as playing a major role in shaping attitudes toward cervical cancer screening, with some participants sharing they felt uncomfortable with pelvic exams. Stigma surrounding cervical cancer and screening procedures was also described as discouraging participation, making community led education essential for changing perceptions. Participants felt that fear and misconceptions about screening could be addressed through culturally relevant and linguistically appropriate communication strategies. Increasing awareness through trusted community networks and health promotion efforts was seen as a way to help reduce anxiety and encourage greater engagement with self-sampling as a viable screening option.

“It will be great to have meetings like this one we have today, and to add TV programs, as well as raising awareness everywhere, especially it is widespread in our country, but in these advanced countries there are resources unless women choose not to do it.”

(Focus Group 2)

Some participants expressed that being examined by a male provider was unacceptable. One participant mentioned, “They feel shy and modesty, if the doctor is a man.” The importance of culturally sensitive care was seen as extending beyond clinical settings to the entire screening experience, from how information was delivered to how results were communicated. Participants mentioned fear of being judged or misunderstood within their community if others knew they participated.

Personas and Empathy Maps

Six personas were developed to reflect the diverse experiences, attitudes, and behaviors of participants regarding cervical cancer screening and HPV self-sampling. This approach helped bring to life the nuanced perspectives of participants and identify common barriers and facilitators to cervical cancer screening. The personas and empathy maps are described in Table 2.

The Unfamiliar Individual

The Unfamiliar Individual persona represented women who had never heard of HPV or self-sampling and had limited knowledge of cervical cancer. Their screening history was often tied to pregnancy, and they did not see routine screening as necessary unless they had symptoms. They may have never had an experience of having screening explained or offered in routine care outside of pregnancy. Their empathy map showed confusion, hesitation, and lack of access to culturally relevant health information that stemmed from language barriers and minimal community conversations on cervical cancer. This persona type likely does not seek out information about HPV or cervical cancer screening and may feel some distrust and skepticism about screening. They may consider screening if a trusted provider recommends it.

The Screening Hesitant Individual

The Screening Hesitant persona experienced discomfort or trauma during their previous experiences with Pap tests and were hesitant about all forms of cervical cancer screening. Their empathy map reflected fear, distrust, and emotional discomfort tied to clinical screening procedures. Despite knowing screening is important, they expressed concerns about pain, lack of choice, and poor communication with providers. This may lead to increased concern about participating in HPV self-sampling, including concern about not collecting a sample correctly. This individual may value a trauma informed approach to address past negative experiences prior to considering participating in screening. There may be frequent delaying of screening as a strategy to avoid the repeat of past negative or painful experiences.

The Screening Curious Individual

The Screening Curious Individual was open to screening but needed more information or reassurance before proceeding. They often expressed curiosity and willingness to participate if encouraged by a provider or trusted person. Their empathy map showed uncertainty and openness to alternative options like self-sampling, and the desire for accessible communication like visual aids. This individual expressed an interest and need to have more information, and was open to receiving this information. This was a curious individual who may be particularly interested in the difference in accuracy between HPV self-sampling and Pap testing.

The Discreet Individual

The Discreet Individual preferred HPV self-sampling because it allowed them to maintain privacy, comfort, and modesty. Their empathy maps showed a strong desire to control their own health decisions. While they appreciated the less invasive nature of self-sampling, they sought clear instructions and assurance. Their health choices were influenced by modesty, privacy, and fear of stigma. This individual may be uncomfortable discussing cervical cancer screening, but is engaged if there is a way to do so that respects privacy and modesty. This person may be particularly receptive to HPV self-sampling as an option for screening, and this could be a good strategy to avoid delays in screening.

Proactive Screener

The Proactive Screener had consistent engagement with preventative healthcare and were well informed about HPV and cervical cancer risk. Their empathy map showed confidence and trust in medical systems. They often encouraged others to screen and reported positive past experiences. This individual is likely up to date on other screenings or prevention activities. The proactive screener appreciated HPV self-sampling but may be equally comfortable with Pap testing. This individual will likely seek information from providers and be supportive of other women who are eligible for cervical cancer screening too.

The Peer Advocate

The Peer Advocate persona was well informed, and actively encouraged screening within their communities. Their empathy map highlighted empowerment, advocacy, and cultural awareness. They recognized stigma around cervical cancer and worked to prevent misconceptions by educating peers through culturally sensitive conversations. This individual was motivated to think about their own screening and wanted to share this information in their family and community. This was an enthusiastic individual who is used to leading health conversations and sees themselves as playing a part to support other women in their community to get screened. They are a champion for health and highly engaged in learning about screening in order to share with others.

Discussion

Despite the advances in cervical cancer screening approaches, there continues to be inequities in screening, contributing to late-stage diagnoses and increased mortality.^3–5 Somali American women are known to face particularly persistent disparities in cervical cancer screening,^19,20 making them a high priority group to focus on to increase screening rates. The SEM²¹ helped guide part of our analysis and showed the complex interaction between individual-, interpersonal-, and community-level factors that impact screening. Women who were more informed and engaged with health services were more likely to get screened, and most of the participants expressed a preference for HPV self-sampling over traditional Pap tests. This preference was rooted in the privacy that self-sampling provides, allowing women to perform the test in the comfort of their own space. These findings align with existing literature that mentions cultural, interpersonal, and systematic barriers to cervical cancer screening among immigrant women.^22–32,38

While the SEM was useful for exploring influences on participation in cervical cancer screening, we also explored how developing personas and empathy maps could further our insights and counter unintended overgeneralizations about patients’ lived experiences.³⁹ Six distinct personas were developed, which included those who we might consider reluctant to participate in screening, such as the unfamiliar individual, the screening hesitant individual, and the screening hesitant individual. Personas also emerged for those who might be receptive to screening, such as the discreet individual and the proactive screener. Finally, a persona emerged for the peer advocate, a persona that not only seeks screening for herself, but for her family and community too.

These personas are hypothetical representations of patients or user experiences and were developed from the experiences patients shared in these focus groups. They offer a complementary perspective on how we might understand the range of responses to cervical cancer screening, in particular the things people may think, feel, do or say, with the intention of fostering empathetic engagement with a wide range of diverse experiences and perspectives.^42–44 It is important to note that while drawn from our data, these are hypothetical representations that may also share the risk of overgeneralization. The empathy maps are a tool to facilitate engagement with the experience of patients, and while they may broaden our perspectives, are not immune from misinterpretation or stereotyping either. Perhaps using such tools as thematic analysis, personas, and empathy maps in combination may offer the greatest opportunities to consider the diverse experiences and needs of members of a particular community.

When considering how we address disparities in screening for Somali American women, the SEM analysis highlights the need for multi-level interventions that address a range of concerns. The personas developed reflected many of these concerns, but also offer the perspective that strategies that are tailored to reflect the wide range of patient experiences are also needed. This reflects findings in the literature that reinforce the need for multi-faceted approaches to meet the wide range of patient needs and experiences.⁵³

While initially emerging in the fields of technology, the use of personas is becoming more commonly applied in healthcare research as a way to center patient needs and experiences in healthcare improvement.⁵⁴ The use of personas and empathy maps could be a useful approach to fostering the use of tailored strategies to engage a wide range of patients in screening. For example, the peer advocate may be engaged as a champion to spread information about screening within the community, the unfamiliar individual may need detailed information and education, and the screening hesitant individual may need trust-building to happen before considering screening. There may be value in training providers to recognize and tailor care to patients through considering such personas. For example, it may be worthwhile to ask questions of patients to assess persona type, and draw on strategies to engage in screening to match. If a patient indicates hesitancy, there may be a need to address prior traumatic experiences. In contrast, if an individual is unfamiliar, broad educational strategies would be helpful. This approach may support providers to avoid overgeneralizations of all patients who are reluctant to screen for similar reasons. This is particularly pertinent to finding ways to address entrenched disparities, and to help avoid overgeneralizations about the experiences of particular patient groups.

Limitations

The study was conducted in Minnesota with Somali American women, which may limit the generalizability of the findings to other settings. There may be additional trends in persona type by age or length of time in the US, which could be explored in a study with a more robust sample size. Additionally, the study focused on women aged 30 to 65, although cervical cancer screening is recommended to begin as early as 21. Including younger adults’ participation may have provided a broader perspective. Finally, this was a secondary data analysis and may be limited by the lack of focus on the potential future use for persona development during the initial study design. There are a range of approaches used to build personas, including through using large quantitative datasets, or smaller qualitative datasets,⁵⁴ such as we have done here. Here we have used a fairly small sample size, and that may be a limitation in this study. It is important to note that the personas create hypothetical representations, and this may limit their application to community members lived experiences. We also suggest personas could be further refined through seeking additional patient and community member input.

Conclusions

This study highlights the diverse experiences, beliefs, and barriers that Somali American women face regarding cervical cancer screening and HPV self-sampling. The SEM can help identify key factors at the individual-, interpersonal-, and community-levels. In addition, the use of personas and empathy mapping offers a complementary approach to consider the broad range of patient experiences and the need for tailored strategies to address the diverse needs within this group. In combination, these approaches may offer tools that translate into clinical practice to support providers in a range of strategies to meet the diverse needs of community members and thoughtfully address screening disparities.

Highlights.

• Somali American women have diverse experiences regarding cervical cancer screening.

• Personas and empathy mapping are tools to capture such diversity meaningfully.

• Personas can inform a broad range of intervention strategies to address disparities.

• Multiple tailored strategies are needed to improve screening among Somali Americans.