Development and Implementation of an HPV Vaccination Survey for American Indians in Cherokee Nation

Abstract

Improving human papillomavirus (HPV) vaccination rates is a public health priority and a crucial cancer prevention goal. We designed a survey to estimate HPV vaccination coverage and understand factors associated with HPV vaccination among American Indian adolescents aged 9 to 17 years in Cherokee Nation, United States. The final survey contains 37 questions across 10 content areas, including HPV vaccination awareness, initiation, reasons, recommendations, and beliefs. This process paper provides an overview of the survey development. We focus on the collaborative process of a tribal–academic partnership and discuss methodological decisions regarding survey sampling, measures, testing, and administration.

The Health and Wellbeing of Indigenous and Tribal Peoples around the Globe: Ensuring and Promoting Best Practice in Research

“…A range of mechanisms across the life of the research project or program, from setting research priorities to ongoing communication to dissemination of results, were described. These included: membership of Indigenous and Tribal people on advisory groups, working groups, steering committees, and governance committees [ 7 , 9 , 10 , 11 , 13 , 14 , 15 , 16 , 23 , 25 , 27 , 30 , 32 , 33 , 34 , 37 ]; involvement of community Elders, other community leaders, and Tribal health centres [ 19 , 25 , 28 , 35 ]; formal and informal partnerships with Aboriginal Community-Controlled Health Organisations, Tribal health services and other community organisations [ 8 , 10 , 14 , 19 , 20 , 22 , 25 , 29 , 30 , 31 ]; hiring and training Indigenous research staff, especially from the relevant community/ies [ 7 , 9 , 10 , 13 , 16 , 18 , 23 , 35 ]; the use of community-based participatory research approaches, co-design, and consumer engagement and involvement [ 12 , 19 , 20 , 23 , 25 , 32 , 33 , 35 ]; and the involvement ...…”

“…In addition to approval by Human Research Ethics Committees and Institutional Review Boards, which are embedded within Western academic institutions, a range of other mechanisms for ensuring appropriate Indigenous and Tribal governance in research were described in the papers included in the Special Issue, such as: approval by a Tribal government, an Indigenous Ethics Committee (e.g., the Aboriginal Health and Medical Research Council’s ethics committee in New South Wales, Australia), or an Aboriginal Community Controlled Health Organisation [ 7 , 8 , 9 , 10 , 12 , 13 , 14 , 16 , 18 , 19 , 22 , 23 , 25 , 28 , 29 , 31 , 35 ]; the use of cultural reference groups and governance committees [ 11 , 13 , 16 , 19 , 23 , 25 , 27 , 33 , 34 ]; and having formal agreed Terms of Reference and/or Resolutions of Support [ 10 , 20 , 29 ].…”

“…Other studies reflected the priorities of government agencies, either through alignment with articulated strategies or through commissioned work [ 24 , 25 , 33 ]. Many studies reflected the expressed needs and priorities of Indigenous and Tribal communities, either directly or through community organisations, Tribal governments, and/or Indigenous/Tribal advisory committee members [ 7 , 8 , 10 , 12 , 14 , 19 , 20 , 22 , 23 , 28 , 30 , 31 , 33 , 34 , 35 ].…”

“…In addition to a growing number of guides on ethics and governance such as those mentioned above, recent attention has been given to how best to report [ 54 ] and evaluate [ 55 ] research with a focus on Indigenous and Tribal peoples. For example, Gopalani and colleagues [ 31 ] described the development and implementation of an HPV vaccination survey in the Cherokee Nation using the Consolidated Criteria for Strengthening the Reporting of Health Research involving Indigenous Peoples (CONSIDER) statement, which covers eight domains: governance; relationships; prioritisation; methodologies; participation; capacity; analysis and findings; and dissemination [ 54 ]. In Australia, an Aboriginal and Torres Strait Islander Quality Appraisal Tool has been developed to assess the quality of research from an Indigenous perspective.…”

“…The resulting Special Issue includes 31 papers in total, with 21 from Australia [ 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 ], 4 from the United States [ 28 , 29 , 30 , 31 ], 3 from Aotearoa/New Zealand [ 32 , 33 , 34 ], 1 from Canada [ 35 ], and 2 from authors in multiple countries [ 36 , 37 ]. This represents a substantial body of research on the health and wellbeing of Indigenous and Tribal peoples, possibly the largest collection ever published.…”