Approximately 53 million individuals were family caregivers in the U.S. in 2020.(1) More than one in five people (21%) provided unpaid healthcare or functional needs for their family members. (1) This is a 9.5 million increase from 2018 (43.5 million), and the family caregiving population is projected to continue to increase.(1) Caregivers are often described as hidden patients because caregiving is burdensome as it requires physical, emotional, financial sacrifices and is usually a long-term commitment, spanning from several years to over a decade.(2) About a quarter of caregivers (26%) report spending over 20 hours per week providing care.(3) Consequentially, this population is vulnerable to an unhealthy lifestyle and are at high risk for chronic diseases.(4–7) Prolonged caregiving causes cumulated stress, including neurohormonal changes and inflammatory responses in the body, weight loss, and sleep deprivation.(8, 9) According to the caregiver data from the Behavioral Risk Factor Surveillance System (BRFSS), in 2015-17, 14.5% of caregivers experienced an unhealthy mental status for 14 and more days in the past month,(10) 17.6% had an unhealthy physical status for 14 days or more in the past month, and 36.7% reported insufficient sleep (less than 7 hours of sleep).(10) Moreover, 40.7% of caregivers reported multiple chronic medical conditions, including coronary heart disease, stroke, asthma, chronic obstructive pulmonary disease (COPD), arthritis, depressive disorder, kidney disease, diabetes, and cancer.(10)
The majority of caregivers are female (61%),(3) and the average age of female caregivers is 50.1 years.(1) Cervical cancer is one of the most prevalent cancers among women in the U.S. and the average age at diagnosis is 50.(11) It is also one of the most common causes of cancer death among U.S. women.(11) For most types of cervical cancer, Human Papilloma Virus (HPV) infection is the primary cause, specifically HPV I6 and 18.(12) Approximately 80 million people in the U.S. are currently infected with HPV.(13) While the majority of HPV infections disappear naturally within 1 to 2 years; (12) persistent high-risk HPV can cause cancers of the cervix, penis and anus.(12) Papanicolaou cytology (Pap smear) detects changes in cells caused by HPV and allows at-risk women to receive treatment before it becomes invasive carcinoma.(14) As early detection can reduce cervical cancer incidence and mortality significantly, active cervical cancer screening is strongly recommended as an effective prevention strategy. The U.S. Preventive Services Task Force (USPSTF) recommends cervical cytology every 3 years for women aged 21 to 29 years old, and for women aged 30-65 years old, either cervical cytology every 3 years, high-risk Human Papilloma Virus (hrHPV) testing every 5 years, or hrHPV testing in combination with cytology (co-testing) every 5 years.(15) In 2018, 12,733 new cervical cancer cases and 4,138 cervical cancer death were reported despite effective prevention and treatment options.(16, 17)
Despite the threat of cervical cancer, knowledge regarding the cause of cervical cancer and the linkage to HPV infection has been low to moderate among Americans.(18–20) Furthermore, HPV knowledge level differs by sociodemographic characteristics (e.g., race/ethnicity, age, income, educational attainment, insurance status, rurality of residence).(20–27) HPV knowledge level was lower in racial/ethnic minorities, including Hmong American immigrants, Korean American immigrants, and Hispanics, older populations, and rural residents.(20–27)
Adherence to the cervical cancer screening guidelines (e.g., pap smear within the past 3 years) has been moderate to high.(28, 29) Previous analysis of HINTS data (2013-14) revealed that 81.3% of 21-65 years of women reported that they had a Pap smear in the past 3 years.(30) However, stark disparities by sociodemographic factors were observed in cervical cancer screening behavior.(2, 3, 35, 4, 8, 9, 28, 31–34) Similar to the HPV knowledge level, the Pap smear test was less utilized in women who were older and racial/ethnic minorities (African American, Asians, Hispanics).(3, 34, 35) Also, low Socioeconomic Status (SES), including low income, low educational attainment, no health insurance, absence of a usual source of healthcare, was significantly associated with low adherence to obtaining cervical cancer screening.(2, 4, 8, 9, 31–33)
Reportedly, HPV knowledge level is an essential indicator in cervical cancer screening utilization as these two are positively associated with each other.(36, 37) Multiple studies have reported this association based on their empirical research or nationally representative survey data analysis.(36, 37) This relationship is also supported by the Theory of Reasoned Action, a theory explaining how intention and health behaviors are related.(5, 6)
While multiple studies have shown disparities in HPV knowledge and cervical cancer screening behavior in women in the U.S., studies focused on family caregivers’ negative health behaviors due to the caregiving burden and the receipt of preventive clinical services, including cancer screening, are still scant with inconsistent results.(38–47) Some studies presented caregivers’ adherence to the Pap smear test being low because of caregiving.(38–41) Other studies reported no association between caregiving status and Pap smear utilization.(39, 42, 43) Studies have also suggested that the caregivers are more aware of the preventive health services and hence actively participating in cancer screening.(44–47)
Despite the limited findings, there has been a longstanding concern that caregivers are less likely to perform cancer screenings because the burden of caregiving may hinder them from obtaining care for themselves and their health status is already vulnerable.(4–7, 38–41) In addition, the burden of caregiving and the association of chronic medical conditions also differed by sociodemographic characteristics. Family caregivers who are women, racial/ethnic minorities, rural residents, and with low income experienced heavier caregiving burdens,(7, 48–52) and also presented with worse health conditions.(50, 53–55) While we can reasonably assume that subgroups of caregivers are disproportionately low in cervical cancer screening and HPV knowledge, little is known in this area. Given the caregivers’ crucial role in patients’ disease management, treatment compliance, resilience, and mental and spiritual support, and family functioning, and the persisting nature of caregiving, this population needs additional support on the importance of obtaining and adhering to cervical cancer screening recommendations. Therefore, this study aimed to identify sociodemographic factors associated with disparities in HPV knowledge and cervical cancer screening behaviors among caregivers in the U.S. This information will contribute to the development of a targeted intervention to interpose existing inequities in this area.