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When Parents are Seriously Ill:Addressing the Needs of the Children
Paula K. Rauch M.D.Founding Director
The Marjorie E. Korff PACT Program
Parenting At a Challenging Time
www.mghpact.org
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The Need
• Millions of children grow up in families in which a parent is medically ill
• NCI estimates ¼ of cancer patients in the US have at least one child 18 years of age or younger
• 1/3 of breast cancer patients have dependent children• Cancer is only one of many life threatening illnesses
afflicting parents of minor children
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Addressing Psychosocial Distress is Central to Quality Care• Meeting Psychosocial Needs of Women With Breast
Cancer, (The Institute of Medicine and National Research Council report, 2004)
• Raises the standard for quality care
• Identifies the need for disseminating guidelines on addressing psychosocial distress with implementation strategies
• COSIP is the EU project recognizing this need
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Barriers to addressing this need
• Little or no formal instruction in ways to guide parents with parenting during their illness is offered during training
• Few adult clinicians have developmental expertise and few child clinicians focus on parental health
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Marjorie E. Korff PACT Program
Every parent facing a life threatening illness deserves expert, timely and practical guidance to support the emotional health of their children.
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www.mghpact.org
• Parent guidance model• Free print out brochure (Dozen Lessons Learned)• Patient and family psycho-educational information• Professional information
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Consultation Model
• Any member of team can request a consult and the patient
• Usually 2-10 visits with the parent and/or co-parent– Sometimes include the child/ren
• Meet inpatient, outpatient, infusion unit, by phone
• Most common times of consultation– New dx, recurrence, end of life
• Most common chief questions– Communication, child behavior, general family coping
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Liaison Role
• Consultation with our social work staff
• Education of different disciplines on the team
• Outreach
• Non cancer related challenges facing parents
• Advocacy
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Three Key Arenas Support Childhood Coping• Supporting the child’s normal routine• Protecting child centered family time • Facilitating communication about the illness and
the treatment
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A Developmental PerspectiveAids Parents and Clinicians• Infancy (Birth to 2 ½)
• Preschool Years (Ages 3 to 6)
• Latency (Ages 7 to 12)
• Adolescence (Ages 13 to 18)
• Older Adolescents (19 to 23)
• Special Considerations
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Infancy
• Attachment and Non verbal security
• The narrative of experience occurs later
• Create the documents for later use– Photos/ annotated albums
– Videos
– Letters
– Journals
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Preschool Years
• Children weave together fantasy and reality (associative logic)
• Children are egocentric
• Associative logic + egocentricity=
– Magical Thinking= I am to blame
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Preschool Parenting Tips
• Maintain routines and loving limit setting
• Institute predictable bedtime ritual
• Don’t interpret behavior– “You really don’t like peas for dinner.” (yes)
– “It’s my cancer, not peas, upsetting you.” (no)
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Latency (Ages 7 to 12)
• Mastery of skills
• Rules and fairness
• Best friends
• Established coping styles
• Simple cause and effect logic– Illnesses must be contagious
– Cancer must be caused by cigarettes
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Latency Parenting Tips
• Protect family time by limiting visitors and turning off the phone at meal times
• Encourage adult friends to call when the children are at school or after bedtime
• Set up weekly review times for the child to show the ill parent the accomplishments of the week: Attend to the details
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Adolescence
• Mature (Abstract) Thinking
• Theoretical understanding and behavior are not on the same plane
• Normally teenagers confide in non parental adults
• Often have a more conflicted relationship with one parent than with the other
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Adolescence Parenting Tips
• Be cautious about assigning teens a parenting role with younger siblings
• Be cautious about making daughters caretakers
• Support relationships with quality non parental adults
• Foster safe independent behavior
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Adolescence Parenting Tips
• Be attuned to signs of depression, substance abuse, or risk taking
• Respect a teen’s coping strategy• Articulate the complexity of finding personal balance
– “Are you hearing too much or too little?”– “Let’s set up a couple nights each week for family dinners and
others with friends?”
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Older Adolescents
• Living away from home
• Serious relationship formation
• Longer time frame decision making
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Older Adolescence Parenting Tips
• Older adolescents/young adults need enough information to make decisions
• Informed decision making is a life skill• Seeking a balance between sharing new life experiences
with parents and putting these on hold to maximize short precious time together
• Love relationships may be more intense
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Facilitating Communication
• Welcome all questions warmly
• Encourage elaboration of the question
• Questions do not need to be answered immediately
• Notice the child’s best times for reflection and discussion
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Facilitating Communication
• Be honest
• Don’t flood the child with details
• Remember that the worst way to hear difficult news is to overhear it
• Encourage children to share everything they hear from others about the parent’s cancer with the parents
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Facilitating Communication
• Remind children: Don’t Worry Alone
• Be creative about vehicles for questions and answers and expression of feelings
• Children need to be allowed to discuss the parent’s cancer with other designated adults if they choose to do so
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Hospital Visits
• Describe what the child will see before entering the room• Let the child determine the length of the visit• Bring a familiar adult to leave with when the child is
ready to go• Bring art materials• Discuss the visit after leaving
• Funerals and memorial services have similar guidance recommendations
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Some Resources
Journal Of Clinical Oncology, Nov 02, Rauch, Muriel, Cassem, available for download
• Raising an Emotionally Healthy Child When a Parent is Sick. Rauch and Muriel
• Helping Children Through a Parent’s Serious Illness. McCue
• www.mghpact.org
• New South Wales Cancer Council (web)
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Thank you!
Paula K. Rauch M.D.Director, Marjorie E. Korff PACT Program
Parenting At a Challenging Time
www.mghpact.org