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

1. WHEN A PARENT HAS BRAIN CANCER:HOW TO TALK TO YOUR KIDS • Jane Turner • Discipline of Psychiatry • School of Medicine

2. 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

3. 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 toldLeedman & Meyerowitz 1999 • More than one-third of children with a parent with cancer felt their parents did nothing to help them copeIssel et al., 1990 • Adolescents especially vulnerable Clarke 1995; Wellisch et al., 1996; Mireault & Compas 1996; Quinn-Beers 2001

4. 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

5. CHILDREN’S ADJUSTMENT TO PARENTAL CANCER • Parent • Disease stage • Physical burden • Depression Relationships Life events Partner ADJUSTMENT Finances etc. Resilience Age and maturity

6. 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: • Fear of abandonment • Express distress through behaviour • The child who is “extra good” may be trying to hold things together and “fix” the situation

7. 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: • Play and physical activity remain important

8. Adolescents: • Capacity for abstract thought fluctuates • Emerging identity/sexuality • Negotiation of social roles and relationships • Risk of parentification: • Struggle if feel that domestic responsibilities are “dumped” on them • Social identity matters: • Stigma of having a parent who is “different”, “not cool”

9. Risk of isolation: • Reluctance to discuss with friends • Imposition of domestic tasks • Anger and resentment at the injustice of the situation: • 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

10. AGE-SPECIFIC NEEDS Young children: • Information which is staged and updated over time • To be told they will always be safe and cared for • To be told it is not their fault • Opportunities to ask questions and express feelings

11. 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

12. Adolescents: • Information • Negotiation not imposition of tasks • Social relationships, leisure activities • Opportunities to ask questions and express feelings

13. 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

14. 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)

15. 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

16. 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

17. 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

18. Self efficacy: A belief that they can control their life and what happens to them: By making sense out of the situation By allying themself to a powerful person who can control the situation Howard et al., 2000 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

19. Information: Lack of information about family illness provides a setting for: Development of false beliefs Feelings of guilt or anxiety 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

20. 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

21. 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

22. 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

23. 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

24. 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: 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

25. 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: Continue with antisocial activities Cohabit with a partner with antisocial behaviour Rutter 1999

26. 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 homeRutter 1999 Parents thus have an important role in providing monitoring and supervision of children Teit et al., 2001

27. 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