Helping the children of your patients

Camilla Sutter, MA, CCLS Child Life Specialist Newton-Wellesley Hospital Newton, MA

Weaver (2010) Cancer Rauch & Muriel (2004) Critical Review of Oncology

2.5 million children have parents who've had cancer

2.5 million children have

who've had

What will happen to the children?

Krauel; 2014 Russell & Rausch, 2011 Helseth 2005

Still developing cognitive skills

Dependence on others

Egocentric

Limited life experience

Poor understanding of healthcare

system

Sources of fear Separation from parents Disruption of routine Loss of control The unknown

Frequent clinic/hospital visits Changed appearance Multiple caregivers Inconsistent routines and discipline Fatigued parent

Children’s “normal” world with an ill parent

Hospital admissions Lack of visiting hours

Change in parent behavior Parent with pain

Change in appearance Change in consciousness

Disruption of routine Difficulty of patient in connecting with child

Emotional unavailability of many adults to child Unanswered questions

When a parent is receiving palliative care

1. Should we tell the children?

2. What do we tell the children?

3. How should we discuss the disease/illness?

4. What do we say if they ask if patient is going to die?

5. Should they visit?

1. Should we tell the children?

Better psychological outcomes are associated with openness of general communication and sharing information

Bylund-Grenklo (2015) Acta Oncologica Philips (2014) Psychooncology Prchal (2009) Psychooncology

Krauel (2012) Expert Review of Pharmoeconomics Raveis (1999) Journal of Youth and Adolescence

Siegel (1996) Journal of Amer Academy of Child and Adol Psychiatry

Magical thinking

Overhearing inaccurate information

Self-blame Loss of trust

If the children are not told

2. What do we tell the children?

Turner, 2007: Palliative Support Care Semple, 2010; Cancer Nursing Clark, 2000; J Advanced Nursing Clark, 2001; J Advanced Nursing

Turner, 2007: Palliative Support Care Semple, 2010; Cancer Nursing Clark, 2000; J Advanced Nursing Clark, 2001; J Advanced Nursing

Commonalities

Mom/Dad’s condition has changed

Best understanding of what may happen

Child did not cause the changes

Someone will be taking care of them

3. How should we discuss the illness with children?

Parent Disease

Back et al (2007) Archive Internal Medicine

Setup Perception Invitation Knowledge Empathize

“The  thing  that  helps  me  most  during  my  mother’s  long  t4eat5ent  time  is  that  she  always  tells  me  what’s  going  on.”                                    -­‐9  year  old  child  

4. What do we say if they ask if he/she will die?

•  Hope without expectation

•  No promises

•  Okay for adults to cry

If death is not certain If the parent is dying

•  Honesty and honest face

•  No euphemisms

•  Expressions of love

•  Follow child’s lead on what to process and discuss

5. Should the children visit?

Conditionally yes

5. Should the children visit?

Regressive behavior Fears:

Contagion Their own fragility That they are causing symptoms

Repetitive questions

What families can expect