**5.2 Cultural competency focus**

412 Cancer Prevention – From Mechanisms to Translational Benefits

**University of Pittsburg Medical Center (PA)**

Survivorship

Physicians, Advanced Practice Nurses

> Practicing professionals, Masters

> Urban/Rural, Primary care clinics

**Virginia Commonwealth University (VCU)** 

Pain management in pediatric patients

Medical Students, Pediatric Residents

Students, Pre-Professional

Pediatric Clinic and Medical Center

**California University of Pennsylvania (PA)**

Cancer-related depression and anxiety

Social Workers

Graduate students, Practicing professionals/ field faculty, BSW, MSW

Rural, Social service agencies

**South Puget Intertribal Planning Agency (SPIPA)** 

> Culture-specific cancer pain

Native Health Workers

Variable education and training as "lay" community health worker

Native American communities

**Marshall University School of Medicine (WV)**

Breast cancer screening and patient communication

> Students, Year 2 Medical School

Academic training program

**University of Florida (UF)** 

Pain and cancerrelated symptoms and management resources

Physicians, Nurses, Social Workers, Office Staff

> Practicing professionals MD, RN, MSW, Diploma

Rural health, primary care clinics (mostly Federally Qualified Health Centers)

The pilot sites reported that the methods were flexible and useful when addressing various cancer topics, with a wide variety of disciplines, and within different organizational settings. Measureable gains in knowledge, skills, and attitudes were realized by all sites. In addition, all four pilot sites experienced benefits beyond those derived by the participant including positive effects such as professional development, institutional visibility, and community relations. A full description of the standards, tools, and pilot site results can be found at

**Audrain Medical Center (MO)**

Skin cancer prevention and early detection

**Discipline** Nurses Physicians

Practicing professionals, Nurses, AD, BSN, MSN

Rural, Public health field workers

Table 1. Scope of pilot site competency initiatives.

**Iowa Cancer Coalition (ICC)** 

Palliative and end-of-life care Hospice care

> Nurses, Medical Assistants

Practicing professionals AD, BSN Certificate

Rural long term care facilities

www.cancercorecompetency.org. (C-Change 2008)

Table 2. Scope of pain and palliative care grant site competency.

**Cancer Topic**

**Healthcare** 

**Level of Education & Experience**

> **Practice Setting**

**Cancer Topic**

**Healthcare discipline**

**Type / Level of education and experience**

> **Practice Setting**

One of the eight grant recipients, the South Puget Intertribal Planning Agency (SPIPA), indicated a specific cultural focus in meeting the needs of the population they serve. They recognized the need to understand cultural experiences and beliefs in order to equip health professionals with the most productive language, tools, and approach to reaching individuals at risk for and living with cancer.(C-Change 2010) The South Puget Intertribal Planning Agency (SPIPA), a Tribally-chartered nonprofit organization serves five Tribes, Chehalis, Nisqually, Shoalwater Bay, Skokomish, and Squaxin Island near Seattle, Washington. SPIPA's grant application described their aim to improve pain and palliative care management for community members.(C-Change 2010) They illustrated the existing cancer burden to their community in terms familiar to most health professionals:

"According to the Washington State Cancer Registry, American Indians/Alaska Natives (AI/ANs) have the highest incidence and mortality rate of cancer incidence of any racial group in our state1. Geographically the SPIPA service population is located in the area of Washington that has had higher than expected total cancer deaths for each year individually and for all years combined. For 2000-2004 combined, the relative risk (rr) was 1.14, or 14% more cancer deaths than expected; this equals about *290 excess deaths* per year. Survival is poorer in small rural towns compared to urban and large rural cities/towns. 2 The reservations served by the Tribal clinics are considered to serve rural populations; the majority is considered Health Professional Shortage Areas (HPSA)."(C-Change 2010)

#### **5.3 Pre-assessment and program planning**

The statistics alone were daunting, but as the planning process unfolded, cultural nuances emerged that made achieving their initial program goal more challenging. As part of the initial needs assessment process, the project leaders conducted a series of talking circles (focus groups) with each tribe. Initially, they gathered feedback that revealed some of the prevailing beliefs of the community, "[f]or Native Elders, pain is not discussed until it is severe, pain is believed to always accompany cancer, and it is not believed that it can be relieved, although traditional healers can help. Many have addiction concerns or concerns about being perceived as 'drug seekers'." This feedback was consistent with previous observations and reinforced the need to address myths in the competency training.(C-Change 2010)

Creating a Sustainable Cancer Workforce: Focus on Disparities and Cultural Competence 415

Table 3. SPIPA logic model.

Feedback that was not expected revealed a culturally-driven difference in basic vocabulary. The word "pain" had a different meaning to tribal members than what is typically understood to mean an unpleasant physical or emotional sensation occurring in varying degrees of severity as a consequence of injury or disease. The word "pain" meant historical trauma from past injustices experienced by Native Americans. Upon further inquiry, the term "discomfort" was a more accurate word for physical symptoms and the term "distress" was a more meaningful word for emotional symptoms. (C-Change 2010)

Initially, the program aimed to strengthen the competency of traditional western medical providers who serve the native community, but the need to empower native health workers with knowledge, skills, and tools to build a bridge between the patient and the medical provider emerged as a more strategic starting point.(C-Change 2010)

Project leaders refined the program goals and audience accordingly to: 1) Address community and patient understanding of cancer pain (distress and discomfort) assessment, communication and management of that distress and discomfort for survivors and caregivers in Native communities; 2) Improve communication and understanding about cancer pain, cancer related distress and discomfort, and palliative care, among Tribal members, their caregivers and the Tribal Health system by providing a common language; 3) Prepare a cadre of community members, targeting caregivers, at the local community level who will be community resources for cancer pain and can effectively provide peer level education within their communities and clinics; and 4) Empower Native people experiencing cancer pain to raise this quality-of-life issue with their health care providers.(C-Change 2010)

The competency goals set for participant included:


Using a logic model, the program leaders designed an interactive workshop that would be delivered by trusted community members to an audience of community "Wellness Workers," caregivers, peer educators, and advocates as well as cancer patients and survivors. The objectives, inputs, outputs, outcomes (short-, medium-, and long-term), and impact are illustrated in Table 3.(C-Change 2010)

#### **5.4 Workshop content and tools**

The workshop content addressed the distinction between cancer discomfort, distress, and historical pain; the importance of treating pain as part of the healing process; myths about addiction; ways to communicate pain; and obstacles to seeking pain management in the

Feedback that was not expected revealed a culturally-driven difference in basic vocabulary. The word "pain" had a different meaning to tribal members than what is typically understood to mean an unpleasant physical or emotional sensation occurring in varying degrees of severity as a consequence of injury or disease. The word "pain" meant historical trauma from past injustices experienced by Native Americans. Upon further inquiry, the term "discomfort" was a more accurate word for physical symptoms and the term "distress"

Initially, the program aimed to strengthen the competency of traditional western medical providers who serve the native community, but the need to empower native health workers with knowledge, skills, and tools to build a bridge between the patient and the medical

Project leaders refined the program goals and audience accordingly to: 1) Address community and patient understanding of cancer pain (distress and discomfort) assessment, communication and management of that distress and discomfort for survivors and caregivers in Native communities; 2) Improve communication and understanding about cancer pain, cancer related distress and discomfort, and palliative care, among Tribal members, their caregivers and the Tribal Health system by providing a common language; 3) Prepare a cadre of community members, targeting caregivers, at the local community level who will be community resources for cancer pain and can effectively provide peer level education within their communities and clinics; and 4) Empower Native people experiencing cancer pain to raise this quality-of-life issue with their health care

Manage symptoms of the cancer pain, distress and discomfort / provide culturally

Perform pain assessment / train "Wellness Workers" (caregivers) on performing

Explain and explore the different treatment options for pain – including culturally

Perform a pain related history taken during physical examination; teach patients how to

Using a logic model, the program leaders designed an interactive workshop that would be delivered by trusted community members to an audience of community "Wellness Workers," caregivers, peer educators, and advocates as well as cancer patients and survivors. The objectives, inputs, outputs, outcomes (short-, medium-, and long-term), and

The workshop content addressed the distinction between cancer discomfort, distress, and historical pain; the importance of treating pain as part of the healing process; myths about addiction; ways to communicate pain; and obstacles to seeking pain management in the

Describe the methods used to identify pain throughout the progression of the disease

was a more meaningful word for emotional symptoms. (C-Change 2010)

provider emerged as a more strategic starting point.(C-Change 2010)

providers.(C-Change 2010)

The competency goals set for participant included:

appropriate tools for describing distress

appropriate as well as medical best practices

impact are illustrated in Table 3.(C-Change 2010)

culturally tailored pain assessment

document/ journal pain

**5.4 Workshop content and tools** 

Differentiate between acute and chronic pain symptoms


Table 3. SPIPA logic model.

Creating a Sustainable Cancer Workforce: Focus on Disparities and Cultural Competence 417

training. Eighty-seven percent were "very" or "extremely likely" to recommend the training

The impact of the workshop series has had a longer lasting and broader impact than expected. SPIPA has produced and distributed journals since the training within and beyond the SPIPA communities. In addition, they have received inquiries from other AI/AN communities interested in hosting a similar workshop. With these initial successes, they are turning back to their original goal of providing competency-based training for culturally appropriate pain management to western medical providers who serve the SPIPA community. The initial investment in the knowledge and skills of native healthcare workers and caregivers should provide an important cultural competency bridge for bringing

**6. A roadmap towards culturally competent community based participatory** 

health infrastructure specifically: where you live indeed determines your health.

To date, health systems research has focused disproportionately more on health services research than community-based public health systems research. Likewise, funding for Community Based Participatory Research (CBPR) is orders of magnitude less than traditional biomedical research. In both instances failure to make progress is complex and advocating for one type of research over the other is counterproductive and may hurt rather than help strengthen the science base required to address cancer health disparities. Perhaps the most fundamental root cause of health disparities is infrastructure in general and the

The three core components of the health infrastructure- workforce, organizational setting, and health system capacity- directly influence a community's health status. Overlaying this already complex relationship is the need to deliver culturally competent care to in our case communities with a historic burden of cancer health disparities. Figure 4 presents a multidimensional framework depicting the relationship among the three core components

The most important perquisite for successful culturally competent care is the collaboration and active participation of the community. Rather than focusing on a community's needs only, asset-driven participation fulfills a pivotal role to inform the development of a culturally competent cancer care workforce on one hand and to embed community assets as an important component of the health system capacity portfolio on the other. Reciprocally, neighborhood community health centers can embed culturally competent care and serve as an anchor of community sustainability. This enriched portfolio can also form the nurturing professional workplace setting of a culturally competent health workforce. In turn, this workforce can also stimulate transformation leading to a better functioning culturally competent health system. This framework also allows for cultural *targeting*—focusing on a culturally-specific population—as well as culturally *tailoring* a health intervention or program to maximize community benefits. This conceptual framework goes beyond the role of cultural leverage in interventions to allow for assessing not only the impact of a health action or intervention as a silo effort; rather it operationalizes the three core components as

patients and care providers together to improve patient outcomes

in the context of delivering culturally competent cancer care.

to a friend.(C-Change 2010)

**5.6 Conclusions** 

**cancer care** 

health system. In preparation for the workshop, two important tools were developed, video segments of cancer survivors discussing their discomfort and distress and a pain journal. The videos were an important way to convey the patient experience with familiar community members and reinforced the importance of expressing, rather than suppressing, pain symptoms.

The pain journal was specially designed to provide a place for patients to record their symptoms and a tool to share their symptoms with their medical providers. The journal contains a variety of resources that prompt a patient to record onset, quality, intensity, duration, and the effect of relief interventions. The prompts included anatomical diagrams, vocabulary lists to describe the pain sensations, functional assessment of activities of daily living, and checklists to inventory other symptoms. In addition to addressing aspects of "discomfort," the journal also explored aspects of "distress" with functional and mood assessment tools.(C-Change 2010)

The CCCP (Comprehensive Cancer Control Program) Advisory Council made a specific recommendation to create a customized pain barometer, mirroring the classic Wong-Baker faces (Figure 3). They commissioned a local artist, Peter Boome, to create a culturally meaningful rendition of this scale using traditional Salish faces. The scale provided a more culturally familiar image and more direct connection to their pain experience. In a broader sense, the knowledge and tools for expressing pain provided in the workshop gave participants "permission" to talk about a subject that was not a cultural norm. (C-Change 2010)

Fig. 3. Pain Barometer.

### **5.5 Evaluation methods and outcomes**

Evaluation methods for the workshop training including a pre- and post-tests for participants, which included questions assessing perceptions, knowledge, and skills. The perception questions assessed changes in confidence in knowledge, ability to recognize distress and discomfort, and ability to communicate symptoms. Knowledge questions assessed definitions of types of discomfort and distress and common interventions to address these symptoms. Skills questions assessed the ability to report symptoms clearly and completely.

In total, 102 people participated in one of the five workshops held for each of the tribes. This represents approximately 3.5% of the combine populations of these communities. Confidence scores increased dramatically from pre- to post test, ranging from 129-233% change on individual questions. Knowledge and skills questions showed modest improvements averaging a 7.4% change. Upon further reflection, the program leaders recognized the role that the timing, format, and reading skills of the participants may have played in these results. During the workshop, the faculty used interactive verbal true/false questions to assess comprehension which anecdotally reflected a much stronger gain in knowledge and skills. When asked about the impact of the training experience, 68% of respondents were "very" or "extremely likely" to change their caregiving as a result of the training. Eighty-seven percent were "very" or "extremely likely" to recommend the training to a friend.(C-Change 2010)
