The Impact of Chronic Illness on the Family: a panel discussion

Judy Ayala, LCSW Berglind St. Louis Jessica Aronoff and Larry Sher Julie and Hannah Raskin Amy Sommers March 17, 2012

Coping with a Chronic Illness

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Think like Emergency Department

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In a family, what affects one affects all.

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Four areas of impact

Initial diagnosis Marriage: Parental Relationship Siblings Letting go

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Adjusting to Initial Diagnosis

While in the hospital parents learn every medical aspect of their childs care, transition home can be wrought with anxiety and stress

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Adjusting to Initial Diagnosis

Developing a sense of confidence and competence It takes a village Recognizing loss Taking care of yourself

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Adjusting to the Initial Diagnosis

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Adjusting to Initial Diagnosis

Brandon St. Louis and his parents Berglind and Delton

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Impact of Chronic Illness on Marriage: Parental Relationship

Flexibility of roles Ensure that the parental relationship stays primary Nurture the marital relationship

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Impact of Chronic Illness on Marriage: Parental Relationship

Flexibility of roles: Spread the joy!

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Impact of Chronic Illness on Marriage: Parental Relationship

Caretaking demands of a childs illness often create an especially close relationship

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Impact of Chronic Illness on Marriage: Parental Relationship

The emotional and physical needs of the child must be balanced with the need for protected time and intimacy for parents

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Impact of Chronic Illness on Marriage: Parental Relationship

Max Aronoff-Sher and his parents Jessica and Larry

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Impact of Chronic Illness on Siblings

There are both positive and negative aspects of having a sibling with a chronic illness

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Impact of Chronic Illness on Siblings

May feel guilty about following their own dreams May worry about their own health issues May resent the time given to the affected child
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Impact of Chronic Illness on Siblings

Parents can curb resentment by:
Having expectations for all family members Expecting and acknowledging ambivalent feeling of family members Allowing typical relationships between siblings

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Impact of Chronic Illness on Siblings

Parents can curb resentment by:
Keeping brothers and sisters apprised of childs condition over time Having some one-on-one time with the sibling

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Impact of Chronic Illness on Siblings

Ben and Hannah Raskin

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Letting Go
All children strive for increasing autonomy and independence

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Letting Go
Children are comforted when they know parents will help them meet their developmental milestones

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Letting Go
Important to monitor and supervise (More than supportactive involvement)

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Letting Go
Every once in a while think about HOW treatment decisions are made, not WHAT the decisions are. Focus on the process.

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Letting Go
Rianna Sommers

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Time for Discussion