Post on 18-Feb-2017
transcript
Talking to your children and young people about Familial
Alzheimer’s Disease / Familial Frontotemporal Dementia
Alison MetcalfeProfessor of Health Care Research
Overview
• Focusing on parents, children and young people.
• Briefly cover the issues for parents, children and young people.
• Practical pointers for families.
Background
Briefly outline the research activities• Research work with families affected by
range of genetic / familial conditions.• Working to co-design interventions to
facilitate family coping and adaptation to living with the condition.
FAMILY SYSTEMS THEORY
Family structure
Family interactions
Family functions
Family life cycleFAMILY SYSTEMS THEORY
Family Systems Theory
• What happens to one family member will have repercussions for all other family members (often v different repercussions).
• Transgenerational stressors.• Facilitation of families coping and adapting
to living with the genetic condition and / or its risks – improved communication is essential.
Factors affecting family communication
• Emotional impact of diagnosis.• Guilt and blame.• Parents knowledge and understanding.• Care giver burden - care fatigue.• Grief – complex grief reactions.• Key transition points for children and
genetic testing
Family roles in the
communication of genetic risk
information
Children's developing understanding and response to genetic risk
Children begin to notice and question visible difference and some
asked if they were likely to be affected in the
same way to what they observed. Some
understood that the condition was a result of the biological relationship
between parents and child in the same way as
eye colour.
Children understood the condition in terms of
what they could see and how it currently impacted on their daily lives. Most understood the notion of hereditary in terms of the condition being passed down through the family
but had no idea of hereditary patterns.
Children began to understand more about the
condition in terms of expected future symptoms and about mortality. Most understood hereditary in
terms of their relationship to their parent(s) but not to
their future children. Most used genetic language but
without an underlying understanding and could not describe hereditary patterns accurately or
quantify risk
Young people understand that they may carry a gene that could or would affect their health. They had a clearer understanding of mortality although still not
always the stages of progression. They were more able to described hereditary patterns and
begin to realise the implications for their own
future children.
Young adults began to understand the wider
implications of the condition and relate it
more to themselves. They realised how it might
impact on their career choices and on their
personal relationships and how their decisions
relating to genetic testing impacted on other family
members.
Up to 7 years 8 - 11 years 12 - 14 years 15 - 17 years 18 years plus
Children seemed to accept information at a
relatively superficial level. There were some
behavioural problems or signs of stress when they
were not given information in difficult
family situations.
Children continued to accept information at a
relatively superficial level and looked for positives
and did not let the condition become the central focus of their
lives
A period of rebellion for some children who became angry and questioned ‘why
me?’ Some children challenged treatments and
routines.
Young people reported upset and shock as they
better understood the mortality or responded to
test results or faced surgery but they continued to look
for positives and not let the condition monopolise their
life.
The most difficult time emotionally. Young adults were coming to terms with
the implications of the condition at a time when so many other important
life decisions and choices are being made.
Understanding of genetic condition and risks
Emotional reaction
Observations• Children will need different information at different times,
whilst discussing the IGC as a family its important to check individual child’s understanding.
• Talking about the genetic condition is a process – reveal information in response to children’s needs and questions.
• Encourage children to ask questions (at appropriate times).• But check what children REALLY want to know• Honesty and trust.• Reassurance and reminders.• Name the condition then at least children can discuss it
… I think the parents have to really really understand a lot of psychology.
Its not just the physical aspects of feeding and going through a major
operation…. All that is secondary I feel to how a mother has to understand
and its a lot of psychological understanding cos if its not there, the
the children are damaged…
Communication tips children, young people and parents have found useful.
• Children and young people prefer informal discussion often whilst doing other things together eg: driving, cooking or gardening.
• Check their understanding because children worry about upsetting their parents and so may not always ask.
• Talking about the genetic condition is an ongoing discussion rather than a one off conversation. Like adults, children probably need information given to them more than once. They may need time to digest information and then want to come back and discuss it.
• Discuss information young people find on the Internet or in newspapers• Discuss emotions – provide reassurance they are not alone.• Explain parents behaviour if they are anxious or upset.• Being with peers eg cousins in similar circumstances might be helpful• Support and guide decision-making, especially with young people, who usually like to
make their own decisions but with advice from parents.• If you do not know the answer, explain some questions do not have answers or that
you will try to find out for your child. • Agree appropriate times to discuss the genetic condition if your child asks questions
at inopportune moments.
New interventions
• Co-design and development of Multi-Family Discussion Groups.
• Implications for genetic nurses and counsellors.
It has been observed that the following points helped parents talk to their children:• Younger children do not have experience to recognise and anticipate the
fuller implications therefore there is a gradual realisation.• Not feeling pressurised to talk by an impending event eg a school science
lesson.• Talking was a relief for parents and ultimately easier than secrets.• Parents can be the role model for young people – giving them insight into
how to cope with the risk.• Recognising siblings may all have different needs, try to find out what each
understands at different times in their development• Ensure children and young people understand a positive genetic test is not
necessarily a diagnosis (unless genetic testing is specifically used to assist with diagnosing an illness) – some get quite confused about this.
• Belief in a child’s right to know.• Support of other family members, friends and health professionals.• Attendance at support groups gave focus to regular discussion with children
and young people with parents discussing where they were going and what had been discussed when they returned.
What helps parents talk to their children?
Preparing parents to talk to children
• Makes family closer• Support for children• Gives insight and helps them
realise that parent’s being upset about the genetic condition is not down to them or their behaviour i.e.‘no fault’ of theirs
• Confidence to talk to close friends• Children and young people feel
valued by parent(s)• Allows discussion of the genetic
condition and its risk without centralising it to life
• A shared reality and understanding helps children and young people cope
• Reduces risk of children getting inaccurate information from elsewhere.
• It can be emotionally taxing dealing with questions
• Children and young people can remind you about the genetic condition, when you do not want to be reminded
• Questions can arise at inopportune moments – explain when it is appropriate to discuss it
• Wanting to talk to peers but networks can be limited
• Can affect school work for a short time (but so can worrying about what’s happening in their family if there is secrecy).
Benefits Drawbacks
Conclusions
• If parents are able it is better to talk to their children and young people.
• Good communication assists the family in coping and adapting to the genetic condition – resilience.
• Getting communication better between parents and children will lead to stronger family relationships in the longer-term.
References - selection
Biesecker B. Erby L. (2008) Adaptation to living with a genetic condition or risk: a mini-review. Clinical Genetics. 74(5):401-7. Brouer-DudokdeWit A, Savenije A, Zoeteweij M, Maat-Kievit A. and Tibben A. (2002). A Hereditary Disorder In the Family and the Family Life Cycle: Huntington Disease as a Paradigm. Family Process 41(4): 677-692.Conkie-Rosell, A., E. M. Heise, et al. (2009). "Genetic Risk Communication: Experiences of Adolescent Girls and Young Women from Families with Fragile X Syndrome." J Genet Couns. Conkie-Rosell, A., G. A. Spiridigliozzi, et al. (2008). "Living with genetic risk: effect on adolescent self-concept." American Journal of Medical Genetics Part(1): 56-69. Fanos JH, Davis J, Puck JM. Sib understanding of genetics and attitudes toward carrier testing for X-linked severe combined immunodeficiency. American Journal of Medical Genetics Part A 2001(98): 46-56.patterns in families with a history of breast/ovarian cancer (HBOC). Psychooncology; 13: 335–345Forrest, K. K., T. E. van, et al. (2009). "How young people find out about their family history of Huntington's disease." Social Science & Medicine 68(10): 1892-1900. Kenen R, Arden-Jones A, Eeles R (2004) We are talking, but are they listening? Communication Mathers J, Greenhough S, Metcalfe A, Cole T, Flanagan S, Wilson S (2010) Family history in primary care: Understanding General Practitioners resistance to clinical genetics: Qualitative study. British Journal of General Practice, 60(574), 221-230McAllister M, Davies L, Payne K, Nicholls S, Donnai D, MacLeod R. (2007). The emotional effects of genetic diseases: implications for clinical genetics. American Journal of Medical Genetics Part A;143A(22):2651-61.Metcalfe A, Plumridge G, Coad J, Shanks A, Gill P (2011) Parents’ and children’s communication about genetic risk: qualitative study learning from families’ experiences. European Journal Human Genetics 19; 640-646 (16 February 2011) doi:10.1038/ejhg.2010.258Pickett T Jnr, Altmaier E, Paulsen JS (2007) Caregiver Burden in Huntington’s Disease. Rehabilitation Psychology 53(3): 311-318Plumridge G, Metcalfe A, Coad J, Gill P.(2010). Family Communication about Genetic Risk Information: Particular Issues for Duchenne Muscular Dystrophy. American Journal of Medical Genetics. Part A 152A: 404–408.Plumridge G, Metcalfe A (Corresponding author), Coad J, Gill P (2011) Siblings’ experiences in families affected by genetic conditions. Journal of Genetic Counselling 20; 374-383 DOI: 10.1007/s10897-011-9361-13Plumridge G, Metcalfe A (Corresponding author), Coad J, Gill P (2011) The role of support groups in facilitating family discussion of genetic risk information. Health Expectations, 17 FEB 2011 DOI: 10.1111/j.1369-7625.2011.00663.xSobel S and Cowan C (2000).Impact of genetic testing for Huntingtons disease on the family system. American Jn of Medical Genetics 90: 49–59.Sobel S and Cowan (2003) Ambiguous Loss and Disenfranchised Grief: The Impact of DNA Predictive Testing on the Family as a System. Family Process 42 1;47-57Travers E, Jones K, Nichol J. (2007) Palliative care provision in Huntington's disease. International Journal of Palliative Nursing 13(3):125-30.