Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012 WHEN A PARENT...
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Transcript of 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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
CHILDREN’S ADJUSTMENT TO PARENTAL CANCER
ADJUSTMENT
Parent• Disease stage• Physical burden• Depression
Life events
Finances etc.
Relationships
Resilience
Partner
Age and maturity
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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”
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
Adolescents: Information Negotiation not imposition of tasks Social relationships, leisure activities Opportunities to ask questions and
express feelings
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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)
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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
Cancer Council Queensland Brain Tumour Support Service Information Session. May, 2012
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