Psychosocial Support Services Research and the Native American

Psychosocial Support Services, Research, and the Native American Experience Patrice Al-Shatti, LMSW, OSW-C Oncology Social Worker Mayo Clinic alshatti. patrice@mayo. edu

Psychosocial Support at Mayo Clinic in Arizona • Counseling for emotional distress and family communication • Coaching to manage treatment effects such as pain and insomnia • Relaxation and guided imagery training to assist patients during difficult medical procedures • Trained assistance to find practical resources • Advocacy with community and governmental entities • Support and education groups – Organ transplant recipients – Bone marrow transplant recipients – Laryngectomy support – Educational classes

The Impact of Psychosocial Gaps: 1000 physicians surveyed, October 2011: • 85% said unmet social needs are directly leading to worse health for all Americans. • 95% of physicians who served low income patients said that social needs are as important to address as medical conditions. • 76% wished the health care system would cover the costs associated with connecting patients to social services if a physician deems it important to overall health. • Only 20% felt confident or very confident in their ability to address their patients’ unmet social needs. • Physicians reported that if they had the power to write prescriptions to address social needs, these would represent one out of every seven prescriptions they write. Health Care's Blind Side: Unmet Social Needs Leading To Worse Health Robert Woods Foundation. 2011

Psychosocial Research Mandates “Improving the delivery of psychosocial health services will require targeted research. This research should aim to clarify the efficacy and effectiveness of new and existing services, including identifying subpopulations who benefit from specific services and the circumstances in which given services are most effective. ” Cancer Care for the Whole Patient. Institute of Medicine Report. 2008.

Psychosocial Research at Mayo Clinic in Arizona • QOL over the course of care: Study of patient reported feedback about mind-body-spirit quality of life during radiation oncology treatment. Patients with head and neck, gastrointestinal, and lung cancers. • Symptom management to improve quality of life: - The use of ginseng to fight treatment related fatigue in breast cancer patients. • - Biobehavioral interventions for hot flashes - Frequency of sexual and urinary dysfunction after colo-rectal surgery End of Life Concerns: - Communication with physicians - Spiritual meaning

IOM Recommendations • Focus on effectiveness research Cancer is that it is not a single disease, and even for a particular cancer site, individuals’ specific psychosocial health care needs may vary. • Identify Effective Interventions Research to date has not focused on helping patients and families with a variety of problems from smoking cessation to impact on families. • Analyze Effectiveness with Disparate Populations

Psychosocial Considerations for Research in Native American Communities Barriers to participation: the research team • Lack of available protocols for common cancer sites and stringent inclusion criteria. • Process of human subjects protection may be lengthy due to multiple legal jurisdictions involved • Study results may not have been shared with the community in the past, “helicopter research”. • Researchers may sometimes believe that native communities are too unstable or dysfunctional to be reliable study partners. • Cultural connections with researchers may be missing. • Studies are sometimes presented in language that is too technical to be understood. • Researchers may be unaware of relevant cultural practices and this lack of awareness may be seen as disrespect.

Psychosocial Considerations Barriers to participation: the community • Tribal nations may believe that they have been over studied with little benefit to the community • Native patients may distrust study researchers. • There may be a belief that participation in disease studies causes disease to appear in one’s family or community. • Community members may not have the resources to be able to participate (i. e. phone service, transportation, internet) • Issues of low income: inability to leave work, difficulty with cost of child care, no savings to fund a stay away from home • Low health literacy for sound medical decision making • A conventional course of treatment lasting 6 to 8 weeks may be too difficult to due these challenges. • Native people may resist being “guinea pigs”.

Cultural issues may affect recruitment, retention, and conduct of a trial. • What if the trial requires medical checkups weekly for one month and the patient lives 200 miles from the clinic? • What if that one month overlaps an important tribal ceremony or holiday? • What if the trial involves eating certain nutritious foods daily but the ceremony requires days of fasting? Or the patient cannot afford the food or does not have easy access? • What if tribal healing practices include herbal treatments but these interfere with cancer treatment?

A Legacy of Pain and Distrust Carlisle Indian Industrial School, 1880 s. Large scale experiment by the US government to “assimilate” Native American children into majority culture. Now seen as cultural genocide, the focus of the school was to eradicate the students’ “Indianness”. “Kill the Indian and save the man. ” Richard Henry Pratt, Superintendent of the Carlisle School As late as 2004: The Havasupai Tribe sued researchers from Arizona State University stating that they misused blood samples. The tribe claims that participants were told that samples would be used to study diabetic genetics, but were in fact also used in studies on schizophrenia, inbreeding, and historic migration patterns, causing humiliation and harm to the tribe.

Think about the Community’s Cancer Plan Example: 82 Northern Plains Native American Cancer Plan The Challenge: The number of American Indians who enroll in clinical trials remain low. Strategies: • • Collaborate with cancer clinical trial providers to increase the awareness and access of clinical trials among tribal members through education and outreach activities. Provide education/training to clinical trial providers to increase their cultural competency so they can more effectively communicate more effectively with American Indian patients and their families. Advocate for programs, such as patient navigator programs, to enhance the communication between clinical trial providers and American Indian patients. Find resources, such as transportation and housing, to allow American Indian patients to participate. Northern Plains Native American Cancer Plan 2008 -2012

Opportunities Abound Let us focus on strengths rather than barriers: • Resilience and survivorship • Respect for elders • Community, family, individual as mutually responsible parts of a whole • Respect for the natural world • Trust in holistic healthcare • Palliative and end-of-life care in the setting of the family “A very great vision is needed and the man who has it must follow it as the eagle seeks the deepest blue of the sky. ” Crazy Horse, Sioux Chief