This document discusses how to foster family resilience and emotional well-being while living with chronic illness. It outlines common mental health issues like depression and anxiety that family members may experience. It provides guidance on identifying when professional help is needed and where to find counseling services. The document emphasizes that building a support system, focusing on family strengths, and developing coping skills can help families adapt to chronic illness and boost their resilience over time.

1. How to foster your family's resilience and build
emotional well-being while living with chronic illness
Caroline Hill, LCSW
UCSF Benioff Children’s Hospital

3. Introduction
 How to know if someone in your family needs
psychological help
 Most common mental health conditions
 Different kinds of help available and how to access
services
 Issues pertaining to siblings and parents
 What you can do as parents to support your family’s
emotional well-being and resilience

5. The Emotional Life of Chronic Illness
 A lifelong process with ups and downs
 Characterized by periods of stability and periods of
challenge, not necessarily illness related
 Additional burdens of chronic illness
 Big range of normal reactions
 Different family members may respond differently
 Most families regain stability within weeks to months

6. Siblings
 Feelings of fear, anger, jealousy, confusion, worry
 Minimizing or disbelief
 Express their feelings in a variety of ways
 Withdrawal/clinginess
 Regression (younger children)
 Attention getting or “acting out” behaviors
 Complaints that they feel sick too

7. Parents
 Feelings of guilt, frustration, responsibility and
helplessness
 Vulnerable to symptoms of anxiety and depression
 Torn between the needs of the child with chronic
illness and the needs of their other children
 Changing roles/identities
 Work stress
 Financial burden

8. Depression vs. Anxiety
Depressive symptoms Anxiety symptoms
 Depressed/”down” mood; in
children/teens anger or
irritability
 Loss of interest or pleasure in
activities
 Significant weight loss or gain
 Insomnia or sleeping too much
 Fatigue or loss of energy
 Feelings of worthlessness or
excessive guilt
 Problems with concentration
 Recurrent thoughts of death
 Excessive worry
 For children, clinginess,
school refusal, loss of
milestones
 Restlessness or feeling on
edge
 Easily fatigued
 Difficulty concentrating
 Irritability
 Muscle tension
 Sleep disturbance

9. Important Considerations
 Persistence: how long?
 Severity: how bad?
 Impairment: how much does it affect your everyday
life?

10. Red Flags
 Marked change in behavior
 Cutting or other forms of self harm
 Suicidal thoughts, notes or statements
 Thoughts of hurting others
 Substance abuse

11. Where to Start
 Pediatrician
 Rheumatology team
 School counselor or social worker
 Local mental health agency
 Insurance plan for information and referrals
 Emergency room or 911

12. A Bit About Counseling
 A very common referral
 A series of conversations with a trained professional
 Variables:
 Kind of counseling (individual, marital, group, etc.)
 Setting (private office, school, hospital, etc.)
 Training (LCSW, LMFT, Ph.D., MD)
 Modality (CBT, brief, play therapy, etc.)

13. Counseling (con’t)
 2 main benefits:
 Emotional outlet in a confidential space
 Help with coping and problem solving
 Family-therapist fit is important: interview a few
therapists
 Give it a chance

14. Good News
 Depression and anxiety are very treatable conditions
(and not necessarily with medications)
 Many different modalities besides medication that
have been proven effective (talk/play therapy, art
therapy, biofeedback and other integrative therapies)
 Changes in lifestyle (e.g. diet, sleep, exercise) can yield
positive results
 Benefits possible within a few weeks of treatment

16. Resilience
 The ability to adapt and do well despite adversity
 Children facing chronic adversity do better when they:
 Have a positive relationship with a competent adult
 Are good learners and problems solvers
 Have areas of competence that they value

17. Building Family Resilience
Develop a support network
Have an outlet for feelings
Identify and build on your family’s strengths
Help your children have valued roles in the family
Spend time together having fun
Help others in need
Encourage and model self care

18. Family Resilience (con’t)
Help your child identify their skills and strengths
Maintain perspective and hope for the future
Educate yourself and your children about the diagnosis
Know your child’s educational rights (504 Plan)
Consider being an advocate or helping your child to be
one

19. Conclusions
 Children and teens living with chronic illness are at
higher risk for mental health disorders as are their
families
 Help is available in a variety of forms
 Building resilience in your family is possible and can
make your family stronger, happier, and better
prepared to cope with the challenges of living with
chronic illness