To our knowledge, this is the first study to provide information regarding the HPV vaccine acceptability at the individual and community level by including four groups representing healthcare providers, community members, parents, and women from the same geographic region. Overall, there were many similar issues raised among the women, parents, community leaders, and healthcare providers. HPV vaccine-related issues mentioned by focus group participants were: 1) the general lack of knowledge about cervical cancer, HPV, and the HPV vaccine, 2) HPV vaccine barriers including limited healthcare access, lack of health insurance and time, the cost of the vaccine, and concern about the short and long-term side effects of the vaccine, 3) cultural attitudes and beliefs that focus on the close knit and conservative nature of the community and the importance of privacy, 4) the attitude that the HPV vaccine promotes promiscuity, 5) belief that cervical cancer is hereditary or caused by environmental factors, and 6) lack of trust of the medical community, individuals from outside the community, and the pharmaceutical companies.
In addition, all groups emphasized the need for educational materials and programs to be developed for both parents and women living in Ohio Appalachia. Although many suggestions focused on the content of the educational materials and programs, a few suggestions were made related to the unique cultural attitudes of individuals living in Appalachia. For example, since privacy and lack of trust of outsiders are significant issues, many groups suggested conducting one-on-one educational sessions by trusted healthcare providers from within the community. Another idea was to include “grandma” in the educational programs to address the multi-generational component of the Appalachian culture. These suggestions address important and distinct cultural factors, but also have significant cost implications for developing cervical cancer prevention campaigns aimed at increasing HPV vaccination rates in this geographic region.
There were differences among and between the types of focus groups. Some of the differences cited by the groups were: 1) only young women mentioned child care as a healthcare barrier; 2) all groups except young women mentioned that individuals were concerned that the HPV vaccine may endanger future reproductive capabilities, the lack of privacy, and the embarrassment associated with cervical cancer; 3) young women reported being under a lot of “stress” because of the lack of education, children, and lack of having a job; 4) healthcare providers reported that they thought that many of their patients had “stress” in their life and felt hopeless; and 5) healthcare providers and community leaders reported that women continue to put themselves last on their lists and use home remedies before visiting a healthcare provider.
Differences were also reported for educational materials and programs. For example, young women suggested including strategies to help them talk to their parents about the HPV vaccine. All groups except the healthcare providers suggested including information about how the HPV vaccine works and to list the pros and cons about the vaccine, while all groups except the young women suggested including the importance of ongoing cervical cancer screening. In addition, suggestions for the placement of educational materials and venues for educational programs differed between groups.
Results of this study highlight the complexity of developing educational materials and programs targeting the HPV vaccine for different (women, parents, children, healthcare providers) constituents living in the same geographic region. Previous research focusing on the acceptability of the HPV vaccine usually included only groups of individuals (e.g. providers, parents, or adolescents) [18
]. Findings from this study corroborate findings from previous studies indicating that there is a lack of knowledge about HPV and its association with cervical cancer, but there is an overall acceptance of the HPV vaccine as a cancer prevention tool; however, at the same time there are concerns about the HPV vaccine’s safety and efficacy, the young age for the vaccine recommendation, as well as the element of stigma associated with an STI-related disease.
Focus groups by design have certain limitations [36
]. The findings cannot be generalized to all women, parents, community leaders, and healthcare providers living in Ohio Appalachia or other Appalachian states. We tried to minimize this limitation by conducting focus groups throughout the Ohio Appalachia region and by using community-based strategies to recruit participants. Individual responses in the focus groups might have been influenced by the group discussion or by a participant who dominated the conversation. This limitation was minimized by using an experienced focus group moderator.
In several of the focus groups, participants may have had a different perspective because they have treated patients with cervical cancer or abnormal Pap tests, had a friend or family member diagnosed with cervical cancer, or had an abnormal Pap test in the past. Although this personal experience may have influenced the focus group discussion, capturing all perspectives about cervical cancer prevention using the HPV vaccine is important for the development of educational materials and programs.
The strengths of this study included using community cancer coalition members to assist with recruiting community members for the focus groups, thus enabling us to include a large number of residents from throughout Ohio Appalachia. To minimize differences among groups because of technique, one individual facilitated all focus groups and the focus group guide had similar questions that were framed appropriately for each type of focus group. For example, young women were asked about their barriers to receiving the vaccine, parents were asked about barriers to having their children vaccinated, healthcare providers were asked about their barriers to providing the vaccine and about their patients’ barriers to receiving the vaccine, and community leaders were asked about the HPV vaccine barriers that were being discussed in the community. This allowed us to document important variations in perspective about the HPV vaccine from different groups even though they live in the same geographic region. In addition, we conducted focus groups until there was information saturation, and several members of the research team assisted with data analysis so that themes identified were not limited to one individual’s opinion.