diabetes care: a family affair

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

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  • 1. JDRF Type 1 Diabetes SymposiumMarch 9, 2013Jennifer Rein, MSW, LICSWClinical Social WorkerBoston Childrens HospitalVictoria Ochoa, MSW, LICSWClinical Social WorkerBoston Childrens Hospital

2. Psychosocial Perspectives onDiabetes in Childhood No disclosures to declare 3. Overview General overview of psychosocialaspects related to caring for a childdiagnosed with a chronic illness Family matters: Patient, Parents, Siblings Practical Applications 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 othersPatients well-beingAdaptationQuality of Life 5. Common Reactions toDiagnosis Angry Sad Frustrated Shocked Confused Relieved Concerned Worried Moody Jealous Guilty Irritated Lonely Overwhelmed Hopeless Embarrassed 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. Grief Cycle (Kubler-Ross, 1969) Five stages of grief: Denial Anger Bargaining Depression Acceptance Change=Loss=Grief Loss of a healthy childanticipatedchildhood 8. Parent/caregiver concerns 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. 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. 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. 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. 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. 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. Impact on patient 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. 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. 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 Its not fair 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. 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. 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. How to help Speak in facts; dispel myths Children make up their own stories Dont be afraid to say I dont know andLets 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. Therapeutic InterventionThe primary goal of alltherapeutic intervention is tohelp the patient integratediabetes into their lives & notfeel overpowered or defined bytheir diagnosis. 24. Therapeutic InterventionStart with communication Listening Problem solving Normalizing Make a plan! Develop goals make sure to include lifegoals independent of diabetes 25. Therapeutic Intervention:Adherence Fostering adherence takes a teamapproach Team includes: Medical providers Involved school personnel Teachers, nurse, coaches Family Friends Community agencies 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. Take Home Points Start with communication Keep it simple Work toward a compromise/negotiate Respect Compassion Partnership 28. Questions

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