diabetes care: a family affair

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