Psychosocial Support Services, Research, and the Native American Experience

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Psychosocial Support Services, Research, and the
Native American Experience

• Patrice Al-Shatti, LMSW, OSW-C
• Oncology Social Worker
• Mayo Clinic
• alshatti.patrice_at_mayo.edu

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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

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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

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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.

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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

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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

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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.

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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 ones
  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.

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• 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?

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A Legacy of Pain and Distrust

• Carlisle Indian Industrial School, 1880s. 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.

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Think about the Communitys 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

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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