Diabetes Care: A Family Affair


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A presentation by Jennifer Rein, MSW, LICSW, and Victoria Ochoa, LICSW, Clinical Social Workers, Boston Children’s Hospital, at JDRF New England Chapter's 2nd Annual “Living Well with T1D” Symposium on March 9, 2013.

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Diabetes Care: A Family Affair

  1. 1. JDRF Type 1 Diabetes SymposiumMarch 9, 2013Jennifer Rein, MSW, LICSWClinical Social WorkerBoston Children’s HospitalVictoria Ochoa, MSW, LICSWClinical Social WorkerBoston Children’s Hospital
  2. 2. Psychosocial Perspectives onDiabetes in Childhood No disclosures to declare
  3. 3. Overview General overview of psychosocialaspects related to caring for a childdiagnosed with a chronic illness Family matters: Patient, Parents, Siblings Practical Applications
  4. 4. Conceptual Model(adapted from Wood & Miller, 1996)PsychologicalSocialBiological• Psychological &emotional functioning• Temperament• Motivation• Problem-solving ability• Familyfunctioning/adjustment• Social functioning(school, work, peers)• Daily hassles• Major life events• Social supports• Physical functioning(disease activity)• Diagnosis• Severity• Visibility to othersPatient’s well-beingAdaptationQuality of Life
  5. 5. Common Reactions toDiagnosis Angry Sad Frustrated Shocked Confused Relieved Concerned Worried Moody Jealous Guilty Irritated Lonely Overwhelmed Hopeless Embarrassed
  6. 6. Coping with chronic illness Differing coping styles Different developmental stages offamily members Previous context/history with illness &grief Ambivalence between craving choicesand craving guidance (control) Loss
  7. 7. Grief Cycle (Kubler-Ross, 1969) Five stages of grief: Denial Anger Bargaining Depression Acceptance Change=Loss=Grief Loss of a healthy child…anticipatedchildhood
  8. 8. Parent/caregiver concerns
  9. 9. Parent/caregiver concerns Disempowerment Guilt/Grief Finding fault/Assigning blame Fear/Anxiety Safety – sending the child into the world Previous experiences with chronicillness Lack of reliable information can raiseanxiety
  10. 10. Parent/caregiver concerns Chronic illness/Diabetes Cyclical vs. progressive Possibility of relapse/remittance Unpredictable○ “A student” Medical choices Risks; side effects Decision making feels foreign Goal = quality life for all family members
  11. 11. Family Functioning “Burnout” is not patient specified Diabetes impacts the entire family Siblings often feel left out, ignored Other social stressors may supersedediabetes Divorce, relocation, illness, death of a familymember, etc.
  12. 12. Impact on brothers and sisters Jealousy = want to be “sick” Parental attention is diverted Isolation from medical explanations Lack of knowledge/understanding = fear Involve in home medical regimen whenpossible/appropriate With permission from the diagnosed child! Magical thinking (story telling)
  13. 13. School issues Academic accommodations 504 Plan vs. Individual Education Plan Peer questions – physicalmanifestations of disease; leaving classto visit the nurse; absences Education meetings – let the studentknow these are happening; invite toattend when appropriate
  14. 14. Primary Aim: Preservingchildhood Forging identity: apart from diabetes○ son/daughter○ brother/sister○ friend○ Student○ musician, athlete, artist, etc.○ Patient Personality remains the same pre andpost diagnosis○ Picky eater is still a picky eater
  15. 15. Impact on patient
  16. 16. Impact on Patient Children often mirror what their parentsare feeling interpret facial cues; tones of voice Children feel anxious whencommunication is not clear andconcretely defined Create a safe environment where child cancome to a parent with their own fears
  17. 17. Impact on Patient Age at diagnosis matters Young age vs. adolescence Expectations of parents and medical ream Length of diagnosis Adolescent who was diagnosed at an earlyage Expectation management
  18. 18. Going public How to tell….. Friends/peers/classmates Teachers/other school adults Need to know vs. Nice to know Stigma of being “different” Feelings of isolation “No one else has diabetes” “It’s not fair”
  19. 19. Impact on patient Transition to adulthood Medical care transfers○ Self care, managing prescriptions, supplies○ Expectations of the medical team; parents Psychosocial considerations○ Self expectations○ Transition is hard○ Support systems shift Concrete concers○ Finances, insurance, etc.
  20. 20. Impact on patient:Adherence Adherence to medical regimen Communication is key○ Lack of information=poor adherence Caring for chronic illness is exhausting for allfamily members Children may try protecting parents Discretion when sharing information Loss of control
  21. 21. Co-morbidity of mood disorders Children with chronic physical illness haveincreased risk of subclinical mental healthproblems Children < 18 y.o. with medical illness have25% rate emotional disorders, compared with18% in healthy children (Wallander andThompson, 1995) Children and adolescents with medicalillness have rates of Major DepressiveDisorder nearly double those seen incommunity ( McDaniel et al., 2000)
  22. 22. How to help Speak in facts; dispel myths Children make up their own stories Don’t be afraid to say “I don’t know” and“Let’s find out together” Provide choice as much as possible Allow the child to have their own feelings Consider therapy Not only for the child
  23. 23. Therapeutic InterventionThe primary goal of alltherapeutic intervention is tohelp the patient integratediabetes into their lives & notfeel overpowered or defined bytheir diagnosis.
  24. 24. Therapeutic InterventionStart with communication Listening Problem solving Normalizing Make a plan! Develop goals – make sure to include lifegoals independent of diabetes
  25. 25. Therapeutic Intervention:Adherence Fostering adherence takes a teamapproach Team includes:○ Medical providers○ Involved school personnel Teachers, nurse, coaches○ Family○ Friends○ Community agencies
  26. 26. Building resiliency Adjustment of other family members Practical resources available School accommodations Social supports Groups; Individual counseling; One-to-onementoring (as mentor or mentee) Maintain consistent routine Continue discipline as with other siblingsor child without medical condition
  27. 27. Take Home Points Start with communication Keep it simple Work toward a compromise/negotiate Respect Compassion Partnership
  28. 28. Questions