diabetes care: a family affair
DESCRIPTION
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.TRANSCRIPT
DIABETES CARE: A FAMILY AFFAIR
PSYCHOSOCIAL PERSPECTIVES ON DIABETES
JDRF Type 1 Diabetes SymposiumMarch 9, 2013
Jennifer Rein, MSW, LICSWClinical Social Worker
Boston Children’s Hospital
Victoria Ochoa, MSW, LICSWClinical Social Worker
Boston Children’s Hospital
Psychosocial Perspectives on Diabetes in Childhood
No disclosures to declare
Overview
General overview of psychosocial aspects related to caring for a child diagnosed with a chronic illness
Family matters:Patient, Parents, Siblings
Practical Applications
Conceptual Model (adapted from Wood & Miller, 1996)
Psychological
Social
Biological
• Psychological & emotional functioning• Temperament• Motivation• Problem-solving ability
• Family functioning/adjustment
• Social functioning (school, work, peers)
• Daily hassles• Major life events• Social supports
• Physical functioning (disease activity)
• Diagnosis• Severity• Visibility to others
Patient’s well-being
Adaptation
Quality of Life
Common Reactions to Diagnosis
Angry Sad Frustrated Shocked Confused Relieved Concerned Worried
Moody Jealous Guilty Irritated Lonely Overwhelmed Hopeless Embarrassed
Coping with chronic illness Differing coping styles Different developmental stages of
family members Previous context/history with illness &
grief Ambivalence between craving choices
and craving guidance (control) Loss
Grief Cycle (Kubler-Ross, 1969)
Five stages of grief:Denial AngerBargainingDepressionAcceptance
Change=Loss=Grief Loss of a healthy child…anticipated
childhood
Parent/caregiver concerns
Parent/caregiver concerns Disempowerment
Guilt/Grief Finding fault/Assigning blameFear/AnxietySafety – sending the child into the world
Previous experiences with chronic illness
Lack of reliable information can raise anxiety
Parent/caregiver concerns Chronic illness/Diabetes
Cyclical vs. progressivePossibility of relapse/remittanceUnpredictable
○ “A student”
Medical choicesRisks; side effectsDecision making feels foreign
Goal = quality life for all family members
Family Functioning
“Burnout” is not patient specified Diabetes impacts the entire family
Siblings often feel left out, ignored Other social stressors may supersede
diabetesDivorce, relocation, illness, death of a family
member, etc.
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 when
possible/appropriateWith permission from the diagnosed child!
Magical thinking (story telling)
School issues
Academic accommodations504 Plan vs. Individual Education Plan
Peer questions – physical manifestations of disease; leaving class to visit the nurse; absences
Education meetings – let the student know these are happening; invite to attend when appropriate
Primary Aim: Preserving childhood Forging identity: apart from diabetes
○ son/daughter ○ brother/sister○ friend ○ Student○ musician, athlete, artist, etc. ○ Patient
Personality remains the same pre and post diagnosis○ Picky eater is still a picky eater
Impact on patient
Impact on Patient
Children often mirror what their parents are feelinginterpret facial cues; tones of voice
Children feel anxious when communication is not clear and concretely definedCreate a safe environment where child can
come to a parent with their own fears
Impact on Patient
Age at diagnosis mattersYoung age vs. adolescenceExpectations of parents and medical ream
Length of diagnosis Adolescent who was diagnosed at an early
ageExpectation management
Going public
How to tell…..Friends/peers/classmatesTeachers/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”
Impact on patient
Transition to adulthoodMedical 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.
Impact on patient: Adherence Adherence to medical regimen
Communication is key○ Lack of information=poor adherence
Caring for chronic illness is exhausting for all family members
Children may try protecting parentsDiscretion when sharing information
Loss of control
Co-morbidity of mood disorders
Children with chronic physical illness have increased risk of subclinical mental health problems
Children < 18 y.o. with medical illness have 25% rate emotional disorders, compared with 18% in healthy children (Wallander and Thompson, 1995)
Children and adolescents with medical illness have rates of Major Depressive Disorder nearly double those seen in community ( McDaniel et al., 2000)
How to help
Speak in facts; dispel mythsChildren 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 therapyNot only for the child
Therapeutic Intervention
The primary goal of all therapeutic intervention is to
help the patient integrate diabetes into their lives & not
feel overpowered or defined by their diagnosis.
Therapeutic Intervention
Start with communicationListeningProblem solvingNormalizingMake a plan!Develop goals – make sure to include life
goals independent of diabetes
Therapeutic Intervention: Adherence
Fostering adherence takes a team approachTeam includes:
○ Medical providers○ Involved school personnel
Teachers, nurse, coaches
○ Family○ Friends○ Community agencies
Building resiliency
Adjustment of other family members Practical resources available
School accommodations Social supports
Groups; Individual counseling; One-to-one mentoring (as mentor or mentee)
Maintain consistent routine Continue discipline as with other siblings
or child without medical condition
Take Home Points
Start with communication Keep it simple Work toward a compromise/negotiate Respect Compassion Partnership
Questions