cancer council queensland brain tumour support service information session. may, 2012 when a parent...

Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012

WHEN A PARENT HAS BRAIN CANCER:HOW TO TALK TO YOUR KIDS

Jane Turner

Discipline of Psychiatry

School of Medicine


WHAT WORRIES PARENTS WITH CANCER?

Parents worry about communicating with their children Halliburton et al., 1992

Lack of information about how to talk with their children Elmberger et al., 2000

Uncertainty about understanding of very young children Hilton and Elfert 1996

In order to “protect” one another from being overwhelmed:

Avoid sharing thoughts and feelings Hymovich 1993

Try to be positive Hilton et al., 2000

Focus on giving children information rather than exploring emotional concerns Shands et al., 2000


WHAT DO CHILDREN THINK?

Children have significantly higher levels of distress than perceived by their parents Welch et al., 1996

28.2% of children were extremely or fairly unsatisfied with how they were told about the diagnosis:

The way they were told Too little information Delay in being told Leedman & Meyerowitz 1999

More than one-third of children with a parent with cancer felt their parents did nothing to help them cope

Issel et al., 1990

Adolescents especially vulnerable Clarke 1995;

Wellisch et al., 1996; Mireault & Compas 1996; Quinn-Beers 2001


Children with a parent with advanced cancer experience: Low self-esteem and self-efficacy

Siegel et al., 1992

Difficulties in a number of domains:• School (35.5%)• Friends (37.8%)• Own physical health (39.9%)

Leedman & Meyerowitz 1999

Greater levels of distress than children who have experienced parental death Christ et al., 1993


CHILDREN’S ADJUSTMENT TO PARENTAL CANCER

ADJUSTMENT

Parent• Disease stage• Physical burden• Depression

Life events

Finances etc.

Relationships

Resilience

Partner

Age and maturity


Young children (up to about 8 years): Egocentric

Magical thinking

Authoritarian sense of morality

Limited capacity to see that things happen by chance

Anxiety is the most common emotion:o Fear of abandonmento Express distress through behaviouro The child who is “extra good” may be trying to hold things

together and “fix” the situation


Middle childhood (about 8 to 12 years): Need to be accepted by others - importance of

social connections

Being different can be a big issue

Insensitive comments from other children can be very wounding

Value being brave and struggle with being distressed

Limited capacity for abstract thought:o Play and physical activity remain important


Adolescents: Capacity for abstract thought fluctuates

Emerging identity/sexuality

Negotiation of social roles and relationships

Risk of parentification:o Struggle if feel that domestic responsibilities are

“dumped” on them

Social identity matters:o Stigma of having a parent who is “different”, “not cool”


Risk of isolation:o Reluctance to discuss with friendso Imposition of domestic tasks

Anger and resentment at the injustice of the situation:o Lack of emotional capacity to integrate

powerful emotions: - “You’re ruining my life”

Potential for irreversible consequences – pregnancy, sexual assault, STIs, injury in MVA, criminal record, drug overdose


AGE-SPECIFIC NEEDS

Young children:Information which is staged and

updated over timeTo be told they will always be safe

and cared forTo be told it is not their faultOpportunities to ask questions and

express feelings


Middle-age children: Information appropriate to

understanding Social and sporting activities To be told it is OK to be sad, not

told to “be brave” Opportunities to ask questions and

express feelings


Adolescents: Information Negotiation not imposition of tasks Social relationships, leisure activities Opportunities to ask questions and

express feelings


RESILIENCE

Refers to the ability of the individual to cope and flourish despite adversity - the ability to “bungee jump” through life

Our final destiny is not shaped just by an event, but the consequences, often adding together

Protection from adversity does not confer resilience

“No child can walk between the raindrops” Worden


RESILIENCE RESEARCH

Large-scale longitudinal studies of children facing adversity such as:

Institutionalisation

Poverty

Parental depression

Violence

Key studies conducted by: Rutter (Isle of Wight study)

Werner (698 students over 30 years)

Masten (205 children, assessed and followed-up 10 years later)

Conger & Conger (558 youth and families over 10 years)

Fergusson & Lynskey (940 students from birth to 16 years)


KEY FINDINGS

Relationships: Benefit for the child of having a good relationship

with at least one adult who is caring Masten 2001

Often a parent, but may be a family friend, teacher or relative

Good parenting is especially important for overcoming serious chronic adversity Masten et al., 1999


Important components of parenting:

Demonstration of affection and warmth Expressing concern for the well-being of

children Garmezy 1991

Low levels of hostility towards children Conger & Conger 2002

Setting and expecting reasonable standards of behaviour Conger & Conger 2002


Being accepted: Having a sense of being seen, confirmed and

respected for who they are Fonagy 1994

Being accepted no matter what

If the child feels that everything around them is a disaster, being made to feel that they as a person are still worthwhile is enormously important


Self efficacy: A belief that they can control their life and

what happens to them:o By making sense out of the situationo By allying themself to a powerful person who can

control the situation

Howard et al., 2000o By attributing the event to luck and seeing themselves as

unlucky Sandler

et al., 2001

Having a perceived area of self-competence which is valued by themself or society (artistic, athletic or academic achievements)

Masten et al., 1999


Information: Lack of information about family

illness provides a setting for:o Development of false beliefso Feelings of guilt or anxietyo A sense of responsibility of the child to try to

“fix” the difficulties facing the family Place et

al., 2002

For a child to learn that they have been “misled” with even the noblest of intents provides a context for mistrust, anger and resentment


Success and mastery: Children gain protection through exposure to tasks

over which they can gain mastery, rather than avoidance of difficult tasks

The experience of “pleasurable success” generates optimism and emotional strength Rutter 1993

Success and mastery in one area are likely to spill over into other areas

Providing opportunities for children to confront difficulties in “do-able” chunks over which they gain mastery allows children to cope with bigger challenges


Activities: Many resilient students are involved in organised

sporting and non-sporting clubs

They are able to talk with pride about personal achievements and accomplishments

Howard & Johnson 2000

Being involved in sporting, cultural and leisure activities may foster self-esteem

Gilligan 1999

In turn the ability to see oneself as worthwhile and meaningful is linked to the ability to handle oneself and successfully negotiate concerns in the environment Heinzer 1995


Contributing: They have chores and tasks which they carry out for

the good of the family

They are made to feel that they are contributing

This is not the same as “dumping” jobs on the child with no discussion


Facing up to problems: Resilient children are more likely to

discuss problems at home

They have been encouraged to face up to difficulties in a constructive way

Howard & Johnson 2000


School experiences: Positive school experiences are associated with better

outcomes Luthar & Zigler 1991 Having a sense of competence promotes better

outcomes Masten et al.,

1990 Teachers can play a powerful role in fostering skills and

abilities:o But they cannot “watch out” for an individual student if

they are unaware of the difficulties

Not confined to academic areas - includes diverse fields such as the arts, technical and mechanical, and sport


Chain reactions: Responses to adversity can generate their own

set of difficulties, and have their own momentum Better outcomes if fewer delinquent peer

associations Fergusson & Lynskey 1996

Membership of a delinquent peer group makes it more likely that children will:o Continue with antisocial activitieso Cohabit with a partner with antisocial behaviour

Rutter 1999


Chain reactions (cont.) Negative chain reactions follow:

Use of drugs or alcohol to relieve stress

Dropping out of education

Leaping into a teenage pregnancy or marriage as a way of

escaping tension at home Rutter 1999

Parents thus have an important role in providing monitoring and supervision of children Teit et al., 2001


TAKE-HOME MESSAGES

Coping with a brain tumour is tough

You would prefer that this wasn’t happening - to you and your family

Children’s needs depend on their age

Children can cope with challenges and there is evidence about things that can help them flourish

It is less about the diagnosis and more about how you deal with it

cancer council queensland brain tumour support service information session. may, 2012 when a parent...

Documents

children information

brain cancer

children halliburton

children elmberger

lack of information

young children hilton

advanced cancer experience

maturity slide