American Indian and Alaska Native Cancer Patients’ Perceptions of a Culturally Specific Patient Navigator Program

Abstract

Lack of access to care, funding limitations, cultural, and social barriers are challenges specific to tribal communities that have led to adverse cancer outcomes among American Indians/Alaska Natives (AI/AN). While the cancer navigator model has been shown to be effective in other underserved communities, it has not been widely implemented in Indian Country. We conducted in-depth interviews with 40 AI/AN patients at tribal clinics in Idaho and Oregon. We developed the survey instrument in partnership with community members to ensure a culturally appropriate semi-structured questionnaire. Questions explored barriers to accessing care, perceptions of the navigator program, satisfaction, and recommendations. AI/AN cancer patients reported physical, emotional, financial, and transportation barriers to care, but most did not feel there were any cultural barriers to receiving care. Navigator services most commonly used included decision making, referrals, transportation, scheduling appointments, and communication. Satisfaction with the program was high. Our study provides a template to develop a culturally appropriate survey instrument for use with an AI/AN population, which could be adapted for use with other indigenous patient populations. Although our sample was small, our qualitative analysis facilitated a deeper understanding of the barriers faced by this population and how a navigator program may best address them. The results reveal the strengths and weakness of this program, and provide baseline patient satisfaction numbers which will allow future patient navigator programs to better create evaluation benchmarks.

Expectations and Needs of Socially Disadvantaged Patients for Navigational Support of Primary Health Care Services

“…Preparation for medical appointments, which sometimes included "rehearsals" with the navigator, was perceived as helpful to patients. This result is consistent with several previous studies that showed a positive relationship between navigational services and communication between the patient and the medical team (11,26,27) . Our results also con rm those of other authors that communication support is a navigational service appreciated by patients (11,26,27) .…”

“…The navigator acts as a bridge between the health system and the biopsychosocial needs of patients, particularly those who are disadvantaged. This is consistent with previous studies that found participants' expectations of navigation service were associated with assistance around informational needs and problem solving, such as how to arrange appointments and where to go for tests (6,11) .…”

“…First, there are services that provide pragmatic support to patients, i.e. by assisting them with referrals to support groups and counselling services; with transportation (11,12) ; by providing information on existing resources (6,13,14) ; by helping with appointment planning (11,12,14,15) ; with lling out documents (16) ; and nally by increasing care coordination (16) . The second category of navigational services includes all services that help patients on a relational or interpersonal level.…”

Survival differences in nasopharyngeal carcinoma among racial and ethnic minority groups in the United States: A retrospective cohort study

“…Given the unique barriers that the Alaska Native/American Indian population faces in accessing adequate health care, this study highlights a critical need for interventions tailored to the American Indian/Alaskan Natives population—whether it is education about risk factors for nasopharyngeal cancer, more frequent screening efforts to increase early detection and systemic interventions such as establishing a patient navigation systems to increase access to care and mitigate barriers to access …”

Expectations and needs of socially vulnerable patients for navigational support of primary health care services

“…Navigation services can be grouped into two categories. First, pragmatic supports including, for example, assistance with referrals to support groups and counselling services [ 16 , 17 ], transportation [ 16 , 17 ], information on existing resources [ 12 , 18 , 19 ], planning appointments [ 16 , 17 , 19 , 20 ], completing forms [ 21 ], and care coordination [ 21 ]. Second, relational, interpersonal or emotional support, including, for example, assistance with decision-making [ 21 ], follow-up care [ 15 ], and response to emotional distress (e.g., listening supportively, providing comfort) [ 12 , 20 ].…”