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

prauch@partners.org

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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General Recommendations

• Captain of kindnesses

• Minister of information

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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

prauch@partners.org

www.mghpact.org