Dr Samantha Phillips Clinical Psychologist

1. Psychological support for parents and patients from diagnosis to transplantation Dr Samantha Phillips Clinical Psychologist

2. Why is this area pertinent? • Transitions • Adolescents • Work • Relationships • Cooking • Finance

3. Transition • The purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-orientated healthcare systems. Society for Adolescent Medicine, 1993. • But there are many transitions

4. Transitions: • Diagnosis • Babyhood • Toddlerhood • Childhood • Teenage • Adulthood • Transplant/EOL

5. Medical Advancement • Kayldeco • Orkambi • Symdeko • Triple therapies • Gene therapies • and Seaweed! • Hope

6. DOH Document: Vision “Young people supported to make the transition to adulthood and to achieve their maximum potential in terms of education, health, development and well-being. Young people taking responsibility for their own health and making informed choices and decisions regarding their emotional and social development, and health and well-being both now and in the future. Services and staff who are able to respond in a sensitive way which encourages engagement and provides high-quality support for young people.” National Service Framework for Children Young People and Maternity Services (2004), Standard 4.

7. Values: • ACT – Russ Harris (ACT made Simple, 2009) • Dna-V - Louise Hayes (The Thriving Adolescent, 2015)

8. Adolescent Health Engagement with healthcare services lessens and health deteriorates around the time of transferring. • So we need to be open and prepared for this! McDonagh, J.E. (2006) Growing up ready for emerging adulthood. An evidence base for professionals involved in transitional care for young people with chronic illness and/or disabilities. London: Department of Health.

9. Hopes & Dreams Young Adults in Context Who am I? Family & Friends Thoughts, feelings, beliefs Romance? Healthcare system Education/ work Hobbies & interests

10. Challenges & Tasks of Young Adulthood self-knowledge self-regulation Bullet-proof self-evaluation Immortal Separation & Individuation??? Family situation important to think about Invincible Physical & Psychological Changes

11. “Blame my Brain!” Development of the adolescent brain: implications for executive function and social cognition Sarah-Jayne Blakemore & Suparna Choudhury Journal of Child Psychology and Psychiatry 47:3 (2006), pp 296–312

12. People with long-term conditions are as likely as their healthy peers to engage in risk-taking activities.

13. ! • Sex and • Relationships

14. Unsafe sexual activity is one of several health risk behaviours recognised during adolescence. Research indicates that young people with long-term conditions are at least as likely if not more likely to exhibit health risk behaviours as their healthy counterparts.

15. Children may feel this information is more important than their parents perceive it to be. • Parents and young people need to be educated about the importance of these issues and signposted to relevant resources and agencies as appropriate.

16. Bristol Patient Survey • “I would have loved to receive any information about sexual issues in my early teens; it simply wasn't discussed. Much to my detriment.” (participant 7) • “...you don't realise how much it affects you until you start and go through it all, worrying about things you shouldn't and would be solved if the cf team spoke more about it all” (participant 17) • “

17. “Too embarrassed to raise any issues” (participant 7) • “awkward to bring up” (participant 1) • “It should be raised by the staff…many folk are likely to be embarrassed to raise it themselves” (participant 16)

18. WHO Standards for Sexuality Education in Europe: A framework for policy makers, educational and health authorities and specialists • Federal Centre for Health Education, BZgA, Cologne 2010

19. focus of this framework • is on sexuality as a “positive human potential and a source of satisfaction and pleasure”. • providing skills and knowledge for healthy sexuality and sexual relationship development is seen as primarily important • secondary importance is the need to develop the skills to prevent ill-heath and unwanted pregnancies • CF and relationships

20. Parents:Emotional Impact • Change • Fear of the unknown • Feeling unknown • Trust • Letting go • Tolerating transition of information from parent to child (for family and team) • How you talk about your adult team is very NB!!

21. Work Work is an important part of adult life as school is for children. It forms part of our identity and self-worth, provides us with routines, challenge and social interaction. It is important for any person with or without CF to develop skills and interests, have hobbies and sports to take part in.

22. Food! • Learning to Cook! • Living with CF, your nutrition is so important as part of what keeps you well and healthy. • Planning shopping and meals is a great preparation for the future!

23. Finance and benefits Find out from the CF team Be armed with information

24. Transplant/EOL • Fork in the road: • research your options • many conversations not one • takes time • planning

25. Dignity Therapy • Tell me a little about your life history, particularly the parts that you either remember most or think are the most important? • When did you feel most alive? • Are there specific things that you would want your family to know about you and are there particular things you would want them to remember? • What are the most important roles you have played in life (family roles, vocational roles, community-service roles, etc.)? • Why were they so important to you and what do you think you accomplished in those roles? • What are your most important accomplishments and what do you feel most proud of?

26. Cont/… • Are there particular things that you feel still need to be said to your loved ones or things that you would want to take the time to say once again? • What are your hopes and dreams for your loved ones? • What have you learned about life that you would want to pass along to others? What advice or words of guidance would you wish to pass along to your (son, daughter, husband, wife, parent(s), others…)? • Are there words or perhaps even instructions that you would like to offer your family to help prepare them for the future? • In creating this permanent record, are there other things that you would like included? • Chochinov, H.M. (2012). Dignity Therapy: Final Words for Final Days. New York: Oxford University Press. • Chochinov, H.M., Hack, T., Hassard, T., Kristjanson, L.J., McClement, S. & Harlos, M. (2005). Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life. Journal of Clinical Oncology, 23 (24), 5520−5525. • Chochinovet al. (2011). Effect of Dignity Therapy on Distress and End-of-Life Experience in Terminally-Ill Patients: A Randomised Control Trial. The Lancet Oncology, 12 (8), 753–762.

27. The End