Youth with Special Health Care Needs: An Ecological Public Health Approach

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Youth with Special Health Care Needs An
Ecological Public Health Approach

• Joseph Telfair, DrPH, MSW/MPHAssociate
  ProfessorDepartment of Maternal Child
  HealthDepartment of PediatricsSchools of Public
  Health and Medicine
• jtelfair_at_ms.soph.uab.edu

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Assumptions

• Transition is a multifaceted, active process
  that attends to the medical, psychosocial, and
  educational/vocational needs of adolescents as
  they move from the child-focused to the
  adult-focused health-care system.
• Health transition facilitates transition in other
  areas as well
• (e.g., work, community, and the school).
• Transition proceeds at different rates for
  different individuals and families (and
  programs)
• J. Adolescent Health 199314570-576

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ECOLOGICAL PROBLEMS CONCERNS

• What professionals should participate
• Compensation for "extraordinary time" related
• to providing coordinated care
• Relationships across and between medical care
  providers and facilities
• Lack of needs assessment data from adolescents
• (as opposed to what providers think they
  need)
• Scarcity of appropriately trained providers

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ECOLOGIAL PROBLEMS CONCERNS

• Relationships between medical care providers and
  other community-based professionals
• Loss of medical provider's image
• Role of parents, families and significant others
  as partners
• Role of parents, families and significant others
  as educators of others

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ECOLOGICAL PROBLEMS CONCERNS

• Lack of Improvements in the HRQOL of Adolescents
  (despite improvements in technology over the last
  30 years)
• There has been very little focus on the role
  community-based and other out-of-hospital
  programs can play in the lives of these
  adolescents.
• Cultural Access

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PRIMARY REALITY OF ADOLESCENT YOUNG ADULTS WITH
SHCN

• For most, condition is a part of their existence,
  not their entire existence
• Most of their functional life is spent not inside
  of the hospital or clinic setting, but at home,
  in school or in the community
• Most are focused on/concerned about dealing with
  or adjusting to life issues in spite of, not
  because of, their condition

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Essential Components of a Good Transition
Program (PH-Min)

• Must have a Comprehensive Approach
• Must be more than a Transfer Clinic
• Must be a Process Oriented Program Multiple
  Systems
• Medical Care - Developmentally Appropriate
• - Adolescent Health
  Focus
• Education - Focus on Client, Family,
  Providers and
• Community
• Support - Case Management, Social,
  Psychological,
• Focus on
  Self-sufficiency and
• Person-defined
  Independence

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Solutions - Program Community

• Use of in-house (medicine), cross-site and
  community multi-disciplinary transition teams and
  individual providers and educators
• Provide mechanisms for coordination and
  account-ability at and between levels of care and
  education
• Identify and develop interventions to counter
  barriers to access and utilization of transition
  care programs
• Assess the strengths and weaknesses of monitoring
  program Re Quality of Monitoring Systems and
  Cultural and Social Accountability/Sensitivity
• Encourage, support and provide a means to conduct
  evidence-based research and evaluation

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Solutions - Program Provider

• Actualize creative financing of transition care
  and adult life preparation
• Develop centralized roles for providers and other
  professionals within the system of the transition
  of care and preparation for adult life
• Integrate the roles of multi-disciplinary
  providers within the family, significant other
  and community-based care and education networks
  of the adolescents health care and adult life
  preparation needs
• Encourage, support and provide assistance to
  multi-disciplinary providers in the study and
  development of an understanding of the transition
  process as one of moving on to adult care and life

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Solutions - Client

• Recognize and utilize peer, family networks and
  social support networks/groups and community
  services
• Encourage, support and provide assistance to
  adolescent in the actualization of empowerment
  and enhance self-efficacy at their own pace
• Encourage, support and provide assistance to
  multi-disciplinary providers in the study and
  development of an understanding of the critical
  role independent decision-making by the client
  plays in assuring success of the transition
  process

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Solutions - Client

• Encourage, support and provide assistance to
  multi-disciplinary providers in the study and
  development of an understanding of the critical
  role played by families and significant others in
  the transition process.

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Solutions - Other

• (Where available) Encourage, support and provide
  assistance for peer education outreach programs
  and peer-led instruction since these hold great
  promise, as approaches that are
  adolescent-centered and adolescent-delivered
•   Understand that
•  Through their own social networks, young people
  can reach out to parts of the population that are
  difficult for older people to reach
• Training peers in schools, in community health
  settings and in other natural environments
  empowers young people by placing them in
  leadership roles
•  Providing leadership opportunities for young
  people builds their self-esteem and advances
  self-efficacy enhancement and empowerment efforts
  among young people