Addressing Risk and Reluctance at the Nexus of HIV and Anal Cancer Screening

BACKGROUND SIGNIFICANCE

Anal cancer is on the rise in the United States, especially among persons living with human immunodeficiency virus (PLHIV; American Cancer Society [ACS], 2014, National Cancer Institute, Surveillance, Epidemiology, and End Results Program, 2014). Over the past decade anal cancer incidence and mortality rates in the United States general population have increased annually by 2.2% and 3.7%, respectively (National Cancer Institute, Surveillance, Epidemiology, and End Results Program, 2014). Examination through meta-analysis reveals that incidence rates for the seropositive population are 30 times higher than for the seronegative population (Shiels, Cole, Kirk, & Poole, 2009). Anal cancer is caused by human papilloma virus (HPV) infection and most commonly transmitted through sexual intercourse (anal, vaginal) and other sexual activities; notably, persons with immune systems compromised by HIV may be less able to fight off HPV infection and, thus, are at elevated risk for most squamous cell cancers (ACS, 2014). A comparison of 13 North American–dwelling cohorts followed over a 10-year period detected substantially higher rates of anal cancer incidence per 100,000 among PLHIV (131 for men who have sex with men [MSM], 46 for other men, 30 for women) versus non-PLHIV (2 for men, 0 for women; Silverberg et al., 2012). The disproportionate burden of this malignancy is of significant concern in the present landscape of cancer control for PLHIV, and early detection of anal cancer or anal intraepithelial lesions (AIN) is crucial to treatment success (Shiels et al., 2009; Shiramizu et al., 2012; Silverberg et al., 2012). Although screening guidelines lack medical consensus and tools, many experts recommend that PLHIV participate routinely in AIN screening (digital rectal examination, anal cytology testing, or anal papanicolaou test; ACS, 2014). The published literature is not definitive on the acceptability of screening procedures to PLHIV men, women, and transgender (TG) persons. A regional study of HIV service providers suggests that AIN screening participation of ethnically diverse MSM and TG may be influenced at least partially, by culture-specific factors (Newman, Roberts, Masongsong, & Wiley, 2008). Novel screening tools (e.g., ambulatory or home kits) for early detection complemented by culturally competent education may offer the prospect of improved survival and enhanced quality of life for adult PLHIV (Newman et al., 2008; Shiramizu et al., 2012).

Hawai‘i’s population is diverse in ethnic/racial and gender identifications, with cultural variations frequently observed in cancer screening utilization patterns (Hawai‘i State Department of Health, Hawai‘i Health Surveillance, 2010). No ethnic/racial group constitutes a majority with Native Hawaiians (NH), Japanese, and Whites accounting for about 60% of the population. Among U.S. states, Hawai‘i has the highest proportion (5.1%) of persons identifying as lesbian, gay, bisexual, transgender (LGBT); it is speculated that general acceptance of LGBT persons permits greater willingness to self-identify (Gates & Newport, 2013). General acceptance notwithstanding, a survey of Hawai‘i-dwelling LGBT individuals reveals challenges in accessing the health care system and low/no use of preventive health services due to gender identity concerns (Stotzer, Ka‘opua, & Diaz, 2014).

Native Hawaiians and Other Pacific Islanders (NHOPI) comprise about 0.2% of the total U.S. population, with the majority of this population living in Hawai‘i (U.S. Department of Health and Human Services Administration, Office of Minority Health, 2014). The U.S. AIDS case rate for NHOPI is twice that of the White population, and the HIV cumulative infection rate for Pacific Islanders from the U.S.-affiliated Pacific Islands (USAPI) is higher than the U.S. national rate for Whites (40.6–107.6 vs.7.0, per 100,1000). While prevalence of anal cancer/dysplasia among Hawai‘i-dwelling PLHIV is not fully known, results from a multiethnic HIV cohort study detected abnormal anal cytologies in about 50% of NH participants (Payam et al., 2011). Although there was no significant ethnic variation in AIN prevalence, researchers noted that NH results may underestimate abnormalities due to this group’s low/no participation in clinical studies. Culturally competent communications are recommended to address current disparities, with sociocultural relevance established through constituent dialogic processes (Airhihenbuwa, 1995; Ka‘opua, 2008; Ka‘opua et al., 2014; Shiramizu et al., 2012).

The current study aimed to inform the promotional/educational component of a larger research project comparing adherence to AIN screening methods (ambulatory screening, screening in the clinical setting) and, thus, is consistent with this journal’s mission to advance application of evidence-based and promising practices for health promotions/education in the context of community-based research praxis. This article reports results from six provider focus groups (FGs) that describe perceived influences to PLHIV participation in AIN screening and identification of culturally competent promotion/education strategies.

METHOD

Sample recruitment was purposive. On receiving approval from relevant institutional review boards, investigators publicized the FG study to public and private nonprofit organizations in the three counties (islands) that together provide service to 95% of all PLHIV living in the State of Hawai‘i (Hawai‘i State Department of Health, HIV/AIDS Surveillance, 2012). Fourteen agencies were approached and 12 agencies (4 AIDS service organizations [ASOs], 3 community health centers, 3 sexually transmitted infections (STI)/HIV testing sites, 2 NH health organizations) participated. Providers of all disciplinary backgrounds were invited to participate. A total of six FG were conducted. The purpose of the first five groups was to elicit community-specific descriptions of screening influences and strategies for AIN screening promotion/education.

The purpose of the sixth group was to confirm, clarify, and/or extend the information provided by the first five groups. All members of this sixth group (n = 5) were qualified by the information-rich feedback each had provided in one of the earlier groups.

The final sample included 28 providers. Twenty-two (78.6 %) identified as social services providers and six (21.4%) identified as health services providers. Years in HIV-related practice ranged from 1 to 25 years (M = 12, SD = 6.3). Age ranged from 27 to 72 years (M = 44, SD = 10.42). About 61% identified “female” as their natal sex and current gender/identity expression. A minority reported gender identity as male (36%) or TG (3%). Participants identified sexual orientation as heterosexual (57%), homosexual (29%), bisexual (11%), and fluid or changing (3%). Highly trained cofacilitators from the research team moderated the interviews, providing a permissive, nonthreating environment that allowed participants to freely share unique views. Participants provided informed written consent, responded to a sociodemographic survey, and commenced discussion. Discussion queries were designed to provide high-quality data within the social context of groups at elevated risk for anal cancer. A semistructured schedule of questions based on Krueger’s (2002) FG methods was used. All queries proceeded from general to more specific concerns. Query types included the following: introductory (e.g., words associated with anal cancer), transitional (e.g., exploration of associations), key (i.e., screening influences, intervention implications), and ending or summary (i.e., most important discussion points) questions.

Analyses involved use of grounded theory (GT; Strauss & Corbin, 2008) and the PEN-3 model for developing culturally appropriate health interventions (Airhihenbuwa, 1995). GT analysis yielded constructs, categories (groups of similar constructs), and theory (system of interrelated categories) related to PLHIV participation in AIN screening. GT findings were subjected to a PEN-3 analysis and led to articulation of educational/promotional strategies. As detailed in Table 2, trustworthiness or analytic rigor was ensured by establishing credibility (confidence in observational veracity), transferability (patterns of sociocultural relationships described), confirmability (findings shaped by participants), and dependability (consistency in results, replicable procedures; Lincoln & Guba, 1985).

RESULTS

DISCUSSION

Data collection and sampling methods limit application of results. The nature of data collection (FGs) is subject to biases of recall (what is remembered) and social desirability (reporting “what” may meet with others’ approval). The convenience sample likely advantages the perspective of providers, particularly those inclined to address emerging service concerns, frontline practitioner/educators, and females. Notably, perceived screening influences are filtered through a frontline provider lens. Although several participants volunteered that they were HIV-positive, HIV status was not part of the eligibility criteria.

Indicated is the need to elicit screening influences from a PLHIV sample that includes persons of more marginalized statuses and possible inclusion of organizational leaders and policy makers who might expand on upstream systems factors.

Limitations notwithstanding, the study had a number of strengths. The convenience sample of providers was criterion-based, thereby fulfilling an essential requirement of GT and yielding rich information, as well as practical suggestions on the experiences of both PLHIV and health care providers in the context of screening. Two analytic methods were applied and an audit trail used to establish rigor (Lincoln & Guba, 1985). The audit offers considerations for investigators seeking to conduct a similar study.

Findings from this study are congruent with those from other studies. Similar findings include the need for: increased awareness and knowledge of anal/other non-AIDS–defining cancers among PLHIV and providers, culturally competent promotions, and attention to living with HIV as a chronic illness (Burkhalter et al., 2013, Newman et al., 2008; Rangel & Adam, 2014). These findings have implications for future inquiries: (1) a meta-synthesis (Walsh & Downe, 2005) that systematically integrates results from related qualitative studies to advance a theory of risk and reluctance to AIN and possibly other non-AIDS–defining cancers screening among PLHIV, (2) development/feasibility testing of educational products (consumer website, print education, provider training curriculum), and (3) specifying of measureable constructs and hypotheses for use in testing screening education/promotions in tandem with biomedical screening innovations.

CONCLUSION

Findings underscore the pervasively, negative influence of ethnocentric, heterosexist morality on risk, reluctance, and AIN screening. Participants discussed this as PLHIV vulnerability to “sex-shaming/-blaming.” To address such vulnerability, screening approaches must move beyond the paradigm of behavior change predicated on knowledge and rational decision making (Rangel & Adam, 2014) and might include “real talk” on everyday risk management in the context of stigma and discrimination. Disclosure of highly sensitive obstacles may be difficult for persons marginalized by minority statuses. Culturally competent, culturally safe barriers counseling (discussion of obstacles and solutions in specific cultural context, with honoring of cultural preferences) is used to positive effect in screening for other malignancies and should be considered in AIN screening promotion/education (Gierisch et al., 2010; Holden et al., 2010; Ka‘opua et al., 2014). Integration of strategies that address perceptions of risk and reluctance to screening may advantage translation of biomedical screening innovations to community settings and, ultimately, potentiate public health benefits for all.