The Journey of a Lifetime - Laura Aguilar


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  • Meeting with staff: often meet nurses, doctors, social workers, child life specialists. Teaching hospital! Amount of people involved can be overwhelming. Important to repeat information given multiple times because family members may not get it first time.
  • Enter into supportive relationship with child and family. Educate family on why you are collecting information and how the information is used to find resources and assess needs.
  • Being the consistent “go to” person for families as medical staff changes. Meeting the out-pt SW while still in-pt to provide continuity of care
  • On going issue! Explore all funding options. Frequent visits to hospital, specifically coming from rural areas, can take toll on finances. Private insurances can bankrupt families. Co-pays, 80%-%20 plans Maslow’s Hierarchy of Needs Travel expenses for treatment add up, especially if pt needs to travel out of state for treatment, transplant, etc. There are options for insurance if you are a child with a chronic illness in NM, such as Medicaid, Children’s Medical Services, the BC/BS NMMIP, private insurance, and Medicare (only for kids that are on dialysis) Waivers
  • Time when families need extra support. Staying in hospital can be long-term or short admissions, but it can be extremely disruptive to lifestyle. Even when discharged, outpatient regimen continues. Depending on severity, one may have to see doctor and get treatment multiple times per week or multiple times per year. Some treatment regimens are planned, ie monthly visits, but infections, illnesses acute episodes can’t be planned for.
  • Treatment always has side effects, whether emotional, physical or behavioral. Focus initially tends to be on physical side effects, where child can lose hair, swell up, get stretch marks, equipment attached, such as catheter, g-tube, port, etc. short stature Important to address side effects as a whole. Validating how they feel, acknowledging that they look different or feel different, but have to go back to school, life, etc. Time to prepare pt to go back to school.
  • Homebound/ Home Hospital Difference between 504 and IEP Examples of accomodations
  • Sometimes it just seems like pt/family can’t get a break. Family may do everything right, and still, things may not go exactly as planned. Every day stressors may turn into crises, ie lost job for one family may be manageable, but for a family with chronic illness may be detrimental
  • Life moves on even in midst of crisis/illness. Stop getting invitations to go out with friends due to limitations
  • Chronic illness has toll on family dynamics/relations. Fighting or disagreements on how to proceed with treatment Siblings often get left out or overlooked. May act out or become withdrawn
  • Lead into the three roads of journey of chronic illness: readmission/relapse, stability/recovery, and death.
  • The Journey of a Lifetime - Laura Aguilar

    1. 1. The Journey of a Lifetime February 25, 2010 Albuquerque, NM
    2. 2. Presented by: <ul><li>Laura Aguilar, LMSW </li></ul><ul><ul><li>Pediatric Cardiology, Nephrology, and Dialysis, UNMH </li></ul></ul><ul><li>Dale Dietz, LMSW </li></ul><ul><ul><li>Pediatric Oncology, UNMH </li></ul></ul><ul><li>Rebecca Marianetti, LMSW </li></ul><ul><ul><li>Pediatric Intensive Care Unit, UNMH </li></ul></ul>
    3. 3. Agenda <ul><li>8:30-9:30 Journey of a Lifetime PowerPoint Presentation </li></ul><ul><li>9:30-9:45 Break </li></ul><ul><li>9:45-10:45 Case Studies </li></ul><ul><li>10:45-11:30 Panel Discussion </li></ul>
    4. 4. The Journey of a Lifetime: The Life of a Child with a Chronic Illness A Road Map of Problematic Issues, Needs, and a Social Worker’s Role
    5. 5. The Beginning: Diagnosis <ul><li>Child can be born with a chronic illness or disease (congenital) </li></ul><ul><li>Illness or disease can develop or progress over time </li></ul><ul><li>Illness can be result of trauma or acute incident </li></ul>
    6. 6. Diagnosis (cont.) <ul><li>Crisis moment </li></ul><ul><ul><li>Emotions, Fears, Blame </li></ul></ul><ul><ul><li>Confusion over medical terminology </li></ul></ul><ul><ul><li>Inundated with information regarding treatment needs and options </li></ul></ul><ul><ul><li>Meeting with staff </li></ul></ul><ul><ul><ul><li>Degree of staff involvement depends on diagnosis and severity </li></ul></ul></ul>
    7. 7. The Initial Assessment <ul><li>Often sets tone for future relationship; focus on rapport building </li></ul><ul><li>Educate family on role of social worker </li></ul><ul><li>Gather info to assess for resources and needs </li></ul>
    8. 8. Tunnel of Uncertainty <ul><li>Fear about treatment/ procedures </li></ul><ul><li>Unknown future </li></ul><ul><li>Expectations </li></ul><ul><li>Long-term survival </li></ul><ul><li>Emotional instability </li></ul>
    9. 9. Financial Issues <ul><li>Initially assess insurance status </li></ul><ul><li>Ensure that maximum funding is in place given chronic illness treatment expense </li></ul><ul><li>Out-of-pocket expenses are substantial even if child has appropriate health insurance </li></ul>
    10. 10. Treatment <ul><li>Inpatient (Hospitalizations) </li></ul><ul><li>Outpatient (clinic visits; outpatient treatments and procedures; lab work) </li></ul><ul><li>Ongoing cycle </li></ul>
    11. 11. Stop Sign: Side Effects <ul><li>Physical changes </li></ul><ul><li>Emotional side effects </li></ul><ul><li>Behavioral side effects </li></ul><ul><li>Big impact on self-esteem of children and teenagers </li></ul>
    12. 12. School Issues <ul><li>High frequency of absenteeism </li></ul><ul><li>Falling behind in classes </li></ul><ul><li>Isolation from peers </li></ul><ul><li>Important to advocate for patient’s needs (set up 504 plan or IEP) </li></ul><ul><li>Schools are legally required to make accommodations for students with medical issues. </li></ul><ul><li>Re-entry Education </li></ul>
    13. 13. Mountains <ul><li>Little issues become big issues and seem insurmountable </li></ul><ul><li>Social worker’s job to support family and help them see strengths in the midst of ongoing stressors </li></ul>
    14. 14. Desert of Isolation <ul><li>In the beginning, many friends and good support </li></ul><ul><li>In the middle, support waxes and wanes </li></ul><ul><li>Isolation sets in for family and patient </li></ul>
    15. 15. Family Discord <ul><li>Marital stress </li></ul><ul><li>Sibling issues </li></ul><ul><li>Lack of support </li></ul>
    16. 16. Good News <ul><li>Treatment going well/ End of treatment </li></ul><ul><li>Illness is under control or in remission </li></ul><ul><li>New friends; Make-A-Wish; Return to School </li></ul><ul><li>Resume life as they knew it </li></ul>
    17. 17. Readmission/Relapse <ul><li>Nature of chronic illness </li></ul><ul><li>Never ending/Ongoing treatment </li></ul><ul><li>Back to desert of isolation and cycle begins again </li></ul><ul><li>Emotional Breakdown </li></ul>
    18. 18. Stability/Recovery <ul><li>No more treatment </li></ul><ul><li>Saying good-bye to patient and family </li></ul><ul><li>Long-term follow-up </li></ul><ul><li>Difficult transition for patient and family after becoming accustomed to intensive support from medical team </li></ul>
    19. 19. Death <ul><li>Sudden/ Expected </li></ul><ul><li>Comfort Care </li></ul><ul><li>Palliative Care </li></ul><ul><li>Hospice </li></ul><ul><li>Grief </li></ul>
    20. 20. Questions???