Jorge E' Lemus, Ph'D'

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Breaking paradigmsPeople with spinal cord
injury and healthcare specialists in El Salvador

• Jorge E. Lemus, Ph.D.
• Universidad Don Bosco
• AIFO Rome Meeting
• Rome, December 11-13, 2007

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El Salvador
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Research triangle
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Organizing People with SCI

• Creating a network of people with SCI
• Identifying leaders
• Organizing meetings at UDB
• Electing a temporary executive board
• Holding independent meetings
• Holding a General assembly
• ALMES is formed, pending legal recognition
• Forming focus groups for the research

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Involving health specialists

• Public Rehabilitation Center (ISRI) involved in
  the project from the beginning
• Reporting to the Ministry of Health
• Forming a focus group with health specialists
  working at ISRI
• Carrying out interview with specialists and
  administrators

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Focus Groups

• Three focus groups of people with SCI
• Facilitator Jorge E. Lemus
• Cofacilitator Ana María Soriano

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Findings
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Health specialists

• Cardiologist
• Neurologist
• Psychologist
• Sexologist
• Urologist
• Nurses
• Fisiotherapists
• Nutritionist

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Discussion questions

• According to your professional practice, which
  are the most important medical care topics that
  should be addressed by people with Spinal Cord
  Injury?
• Sexuality issues
• Bladder and bowel control
• Pressure scars
• Proper position of the individual
• Proper diet
• Stress management
• Labor insertion
• Sports and rehabilitation
• Urinary tract infections

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• Which are the most recurrent health problems
  people with SCI seek professional medical
  assistance?
• Social insertion
• Sexual problems
• Family acceptance
• Incontinence
• Pain syndrome
• Pressure scars
• Mobility problems

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• Is there any information available for people
  with SCI about how to prevent or solve the health
  problems related to their condition? Where is it?
  How can it be obtained?
• Internet
• Life after a Spinal Cord Injury. Book on SCI
  edited in Canada and translated into Spanish.
• Scattered publications. There are no formal
  publications on this topic in Spanish for a
  general audience.

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• What are the precautions that people with SCI
  should take re-garding self-care?
• Perform self-care only if properly trained by
  an expert
• Constantly check their body for red spots, skin
  color changes, scars, perspiration, fever, etc.
• Check for urinary tracts infections, fever
• Be aware of their physical limitations
• Keep a hygienic environment at home to avoid
  infections.
• Seek professional help when they dont know how
  to treat their health problems

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• Are there any specific health problems people
  with SCI should be more careful with and seek
  immediate professional assistance?
• Fever
• Urination and defecation problems
• Anxiety, fear, stress, frustration, etc.
• Pressure scars
• Reddening of skin
• Intense headache
• Problems to discuss sex issues

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Individuals with SCI

• Which are the most common health problems for
  which you have to visit a health center or your
  doctor?
• Urinary tracts
• Sleeping problems
• Spasms
• Diabetes
• Kidneys
• Scars, pressure scars
• Stress
• Nervousness
• Constipation
• Fever
• Pain
• Wounds
• Gynecology
• Psychiatric control

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• 2. If you wanted more information about your
  condition, where could you get it?
• Internet
• Physicians and health specialists
• ALMES
• Book Vida después de una lesión medular
• Rehabilitation centers
• People with SCI who have overcome most physical
  and social barriers
• Friends who have experience taking care of SCI
  individuals
• Abroad

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• 3. In todays group, who has more experience on
  self-care? Where did you get the information
  from?
• Rehabilitation center
• Nurses
• Health specialists
• Relatives
• Friends
• ISRI
• Family doctor
• People with more experience
• Trial and error

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• If you could receive more information and
  training on self-care, what topics seem most
  important to you? Why?
• How to prevent and treat urinary tract
  infections
• Suggested positions to avoid pressure scars
• How to prevent gaining weight?
• Diet
• Sexuality issues
• Proper use of catheter
• Proper care of catheter
• Blood circulation
• Incontinence
• About their own condition
• Mental health
• How to overcome depression
• Proper clothing
• Proper bed
• Defecation methods
• How to have and independent life
• Self-esteem
• Constipation

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• Who should receive this training? Why?
• People with SCI
• Doctors
• Nurses
• Our caregivers
• The whole family
• Spouses and children
• Health centers and hospitals
• Rehabilitation centers
• Health promoters
• Population in general
• People from rural areas
• Administrators of health centers and hospitals
• Friends

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Training Seminar

• Two-day intensive training on self-care and other
  health issues
• 15 health specialists provided the training
• 35 individuals with SCI and their caregivers
  participated
• The topics discussed were suggested in the focus
  groups

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Follow up Focus Group
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Conclusions

• Disability is a social development problem
• People with disabilities are invisible to society
• People with disabilobilities can take control of
  their own lives

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Negative paradigms

• People with disabilities have to adapt to society
• People with diabilities cannot perform normally
  in the job.
• People with disabilities are a burden to society
• Medical specialists are the only ones capable of
  solving the health problems of people with
  diabilities.

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New Paradigms

• Society must insert people with disabilities.
• People with disabilities are productive in their
  jobs, according to theire capacities.
• People with disabilites contribute to society.
• People with disabilites can prevent their health
  problems and have a better quality of life.

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New Selfcare Paradigm

• Change of role of health specialists, from
  providers of medical services to facilitators and
  promoters of self-care.
• People with disabilities who are in control of
  their own conditions through self-care have a
  healthier, more productive life.

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Thank you!