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Teen Metamorphosis

Teen Metamorphosis

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Teen Metamorphosis

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  1. Teen Metamorphosis Debb Andersen, RN, BSN, CCTC Manager, Liver and Intestinal Transplant Nebraska Medicine September 27th, 2017

  2. Case Study: Alex • 1991: transplanted as an infant, lost graft to chronic rejection, re-transplanted with LRD from mom at 2 • 1993: -1997 had numerous medical problems which kept her in touch with the transplant team • 1997: parents experiencing marital problems, first late lab • 1998-1999 • Labs obtained only after reminder calls and late lab letters sent/Social work involved • 2002:Parents divorced

  3. Alex • 2003: • “I lectured her on taking her cyclo religiously” • Hotline referral to CPS • 2004-2007: • Missed labs/Missed meds • Depression: Referral to psychology/psychiatry with missed appointments • CPS referral repeatedly with decision not to remove child from home • 2008: • Transferred not transitioned to adult services • Admitted to psychiatric unit for depression • Positive for THC

  4. Alex • 2009: • Evaluated for re-transplantation/Placed on compliance protocol for 6 months • 2010: • Rapidly deteriorating medical condition: hospitalized frequently • Maintained compliance/Listed for transplant • Renal failure, severe pancreatitis, liver failure • Made a status 7 (inactive) • died

  5. Does transplant affect children and teens?? • Chronic Disease impacts cognitive development in children. Development al outcomes are influenced by various pre-transplant factors such as disease onset, severity and morbidity before and during the transplant • Young adult and adolescent transplant recipients have the highest rates of acute rejection, death-censored graft loss, and chronic rejection that leads to graft loss. Non-adherence is a significant contributing factor. • Rates of substance abuse, suicide and mortality are twice those of other 12-17 year olds.. • In a study of 2o adolescent renal transplant patients, 8 patients lost their graft following transition. Solid Organ Transplantation in Children: Transition to Adult Health Care, LaRosa et al: March 2011: Pediatrics

  6. Cognitive Development Following Pediatric Solid Organ Transplant (Renal) • Can have significant impairment of gross motor and fine motor skills • may cause these children to be considered clumsy by peers • affect school function in the classroom by impacting communication skills and social interactions. Solid Organ Transplantation in Children: Transition to Adult Health Care, LaRosa et al: March 2011: Pediatrics

  7. Cognitive Development Following Pediatric Solid Organ Transplant (Renal) • 2008: Study of 68 adults at 20-38 years of age who received kidney transplants as children • Education levels similar to those off general population • Larger than expected percentage of these patients were unemployed and still residing with their parents. • 83% reported that the suffered from anxiety, depression or both • “Understanding the hurdles of childhood transplant when transitioning to life as adults is the next frontier of research in pediatric transplantation.” Alonso and Sorensen Current Opinions in Transplantation 2009

  8. Cognitive Development Following Pediatric Solid Organ Transplant (Liver) • SPLIT Registry • 636 recipients > 6 years old revealed that learning disability had been diagnosed in 17.7% of liver transplant recipients as compared to 8% in the normal population • 42% received special education services Alonso and Sorensen Current Opinions in Transplantation 2009

  9. Cognitive Development Following Pediatric Solid Organ Transplant (Heart) • 2006 research published in Heart and Lung Transplantation • 34 patients from 1.3 to 15.3 years • Testing performed at 12 and 36 months post-tx • Mean scores of intelligence and academic achievement were within the normal range and appeared stable over the testing period • Behavioral problems were reported in 33% compared to 10% of the normal population Alonso and Sorensen Current Opinions in Transplantation 2009

  10. Cognitive Development Following Pediatric Solid Organ Transplant (Intestine) • 2004 study done by Miami group suggests that this group may be at high risk for cognitive delay • Measuring infant development as assessed by Bayley scales in 9 infants before and approximately 2 months after multi-visceral transplant actually displayed worsening developmental delay in the early rehabilitation phase • Other studies have suggested that this group is more delayed than infants receiving liver only transplant • Liver disease, chronic malnutrition, and prolonged hospitalization, pre-term infants, play an important role. Alonso and Sorensen Current Opinions in Transplantation 2009

  11. Cognitive Development Following Pediatric Solid Organ Transplant “Organ Transplantation saves lives and reverses terminal illness, but, the post-transplant condition is not equal to that of healthy children and these patients often struggle with cognitive and developmental deficits.”

  12. Brain Development and the Emerging Adult Martin & McCurdy, 2012

  13. Martin & McCurdy, 2012

  14. Adolescent Brain

  15. What are Normal Developmental Tasks of Adolescents Pediatric Clinics of North America ; 57 (2010)

  16. The Teenage Brain: Adaptation

  17. The above composite MRI brain images show top views of the sequence of gray matter maturation over the surface of the brain. Researchers found that, overall, gray matter volume increased at earlier ages, followed by sustained loss and thinning starting around puberty, which correlates with advancing cognitive abilities. Scientists think this process reflects greater organization of the brain as it prunes redundant connections, and increases in myelin, which enhance transmission of brain messages.During adolescence, brain connections and signaling mechanisms selectively change over time to meet the needs of the environment. http://www.sfn.org/index.aspx?pagename=brainBriefings_Adolescent_brain

  18. Autonomy

  19. Autonomy • Autonomy is the defining characteristic of adulthood • Achieving independence from their parents or “freedom to do things my way” • Teens with chronic health conditions may see themselves as permanently dependent • May assume their care is the responsibility of others • Parents may be overprotective and not want to give up care, obstruct the child’s sense of autonomy • Or, out of frustration parents may be tempted to turn over all responsibility for medications, medical care all at once before child is prepared to care for self

  20. Identity

  21. Identity • Identify is the essential self or the set of characteristics that somebody recognizes as belonging uniquely to himself or herself and constituting his or her individual personality • Most of us spend most of their adolescence figuring this out • A healthy identity for transplanted youth incorporates transplant and their health status into their identity • Identifies themselves with transplant

  22. Cognitive Thinking

  23. Cognitive Thinking • Ability to understand abstract thinking • Teens move from concrete to sophisticated abstract thinking • Executive functions, the last to fully develop • Develop moral standards • Organization, planning, self regulation, selective attention and inhibition • Concrete: see today’s truth as the only one, black and white • Shifts in what is happening around them can change their thinking • Can be adherent as long as the situation stays the same but difficult when different situations arise

  24. Emotional Development

  25. Emotional Development • Learning how to behave in response to their emotions • Dramatic or even histrionic • Need to believe that their feelings are being respected • Often misread facial expressions and body language of others • If emotional heat is applied to cognitive decision making, a teen will make the wrong decision • Emotional development delayed or regresses with episodes of illness

  26. Relationships

  27. Relationships • Developing relationships with friends are an important support and mirror of what is normal. • Need to have developed relationships with peers. • Peers of transplant teens perceive them to be different, cognitively and/or physically. • Seen as slow or clumsy • Transplanted teens perceive themselves as different

  28. Sexual Identify

  29. Sexual Identify • adjusting to growing bodies and newly acquired sexual characteristics. • learn to manage sexual feelings and to engage in healthy sexual behaviors. • establishing a sexual identity • developing the skills for romantic relationships • Puberty or menarche may be delayed or disrupted is teens with transplantation • May have misconceptions about how their transplant affects their sexuality and ability to have sex • Physical concerns about body image • Lack of knowledge regarding increased risk of contracting a sexually transmitted infection because of immunosuppression

  30. Education

  31. Education • Expected part of adolescence • Parents, teachers and peers may not understand cognitive delays or effects of end-stage organ disease, transplantation and missed school • Fear being behind academically • May not be able to participate in normal school activities • Understand their own deficits but may not be able or willing to present them to others • Have problems with learning, attention, memory, and standardized test achievement • Difficulty with school re-entry after protracted absence, which often strains peer relationships, dampens self esteem and adversely affects overall academic achievement

  32. Entering the work world

  33. Entering the work world • Cognitively unable to participate in regular work activities • May not been held accountable for work at home • Delay in entering college and leaving home due to lack of autonomy • Delayed entry into workforce which may permanently decrease ability to get jobs later: disabled mentality • Insurance coverage issues

  34. Risk taking and Compliance Chronically ill teens may not have had chances to takes risks in a healthy way……… not taking their meds is their way to be in control

  35. Teenage Risk Taking

  36. Flashpoints for Adult Concerns • Substance abuse • Sexual activity • Diet • Self image • Disobedience • Religious/political/peer affiliation • Inconsistencies in attitude, moods and commitments

  37. Proceed with Caution

  38. Transition • Transfer is an action of moving someone from one place to another • Transfer to adult care should not be determined by chronological age, but by identifying ability to perform developmental tasks • American Society of Adolescent refers to transition as a purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems. • McCullough and Kelly: “Transition to adult care is an active process that attends to the medical, psycho-social and educational/vocational needs of adolescents as they move from child to adult centered care.”

  39. Tasks that teens Should Achieve Prior to Transfer to Adult Care • Understanding of and the ability to describe the original cause of the organ failure and the subsequent need for transplantation. • Knowledge related to medications including the name, dose, function, timing, and side effects • Awareness of the short term and long term implications of the transplant condition on overall health and other aspects of life • Comprehension of the impact of transplantation on reproductive health and sexuality.

  40. Tasks that teens Should Achieve Prior to Transfer of Care • Expressed readiness to move into adulthood • Capacity to provide care independently • Demonstration of responsibility for one’s own health care • Ownership of medical information in a concise portable medical summary • Obtain adequate insurance coverage Adapted from Bell et all

  41. The Role of the Coordinator in Transition • Individualized health care transition plan • Checklist of developmentally appropriate self-management tasks • Monitor progress on the check list and the transition plan • Increase responsibility as patient meets developmental goals • Work with team to provide a portable, up to date, concise medical summary • Facilitate communication between pedi team and adult team • Provide logistical information regarding location, adult clinic procedures and scheduling • Adult team MUST provide support to transitioning teen

  42. The Role of the Parent in Transition • Nurture • Educate • Support • Facilitate • Forgive • Love Let go

  43. Insights into building relationships with teens • Zulu word: Ubantu • I am who I am because of those around me. • It takes a village to raise a child. • Ecological Systems Theory:Bronfebrenner, 1992 “persons are active agents in a world characterized as interactive. Focus is on the underlying processes not outcomes. Understanding the Multiplicity of interactions and interrelatedness is the key” Dr. James Sorrell, Clinical Psychiatrist University of Nebraska Medical Center Used with Permission

  44. Fundamental Insight of Ecological Systems Theory Adaptive behavior requires participation in progressively more complex reciprocal activity on a regular basis and over extended periods of time with one or more persons with whom the child develops a strong, mutual irrational attachment and who are committed to that child’s development for life. Dr. James Sorrell, Clinical Psychiatrist University of Nebraska Medical Center Used with Permission

  45. How do we build relationships? • Don’t be a substitute for or an extender or parental concerns or authority • Our positive commitments to them rest on our ability to see them as merely children and not fully developed adults • Don’t be prone to anger or revulsion for their help-rejecting behavior • Develop your own relationships with them • Use nurturing and teaching as our key developmental tasks • Send their parents out of the room, talk to them 1:1 • Approach kids with a pure heart • Be slow to judgement

  46. Challenges for all of us • No care provider can ignore the need for a a formal transition process. • There are different challenges for each patient and each program. • It is our responsibility to help teens move into adult care. • We must develop personal relationship with teens.

  47. Moving from Pediatric Care to Adult Care at Nebraska Medicine • Outcomes of 40 patients moved to Adult Care

  48. This presentation is dedicated to all the Alex’s that we hold dear to our hearts.