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.

1. JDRF Type 1 Diabetes Symposium
March 9, 2013
Jennifer Rein, MSW, LICSW
Clinical Social Worker
Boston Children’s Hospital
Victoria Ochoa, MSW, LICSW
Clinical Social Worker
Boston Children’s Hospital

2. Psychosocial Perspectives on
Diabetes in Childhood
 No disclosures to declare

3. Overview
 General overview of psychosocial
aspects related to caring for a child
diagnosed with a chronic illness
 Family matters:
 Patient, Parents, Siblings
 Practical Applications

4. 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

5. Common Reactions to
Diagnosis
 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 of
family members
 Previous context/history with illness &
grief
 Ambivalence between craving choices
and 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 child…anticipated
childhood

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 chronic
illness
 Lack of reliable information can raise
anxiety

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 supersede
diabetes
 Divorce, relocation, illness, death of a family
member, 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 when
possible/appropriate
 With permission from the diagnosed child!
 Magical thinking (story telling)

13. School issues
 Academic accommodations
 504 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

14. 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

15. Impact on patient

16. Impact on Patient
 Children often mirror what their parents
are feeling
 interpret facial cues; tones of voice
 Children feel anxious when
communication is not clear and
concretely defined
 Create a safe environment where child can
come 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 early
age
 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”
 “It’s 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 all
family members
 Children may try protecting parents
 Discretion when sharing information
 Loss of control

21. 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)

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. 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.

24. Therapeutic Intervention
Start with communication
 Listening
 Problem solving
 Normalizing
 Make a plan!
 Develop goals – make sure to include life
goals independent of diabetes

25. Therapeutic Intervention:
Adherence
 Fostering adherence takes a team
approach
 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-one
mentoring (as mentor or mentee)
 Maintain consistent routine
 Continue discipline as with other siblings
or child without medical condition

27. Take Home Points
 Start with communication
 Keep it simple
 Work toward a compromise/negotiate
 Respect
 Compassion
 Partnership

29. Questions