Kristina Soon Clinical Psychologist Great Ormond Street Hospital University College London

Transcription

1 Kristina Soon Clinical Psychologist Great Ormond Street Hospital University College London

2 Being a Witness to Loss Loss(is) not only. painful to experience but it is also painful to witness, if only because we are so impotent to help. To the bereaved, nothing but the return of the lost person can bring true comfort; should what we provide fall short of that, it is felt almost as an insult. John Bowlby, 1980

3 Learning Objectives What we know about psychological function in children and adults with EB How it helps us to understand the specific processes by which EB impacts on individuals To start thinking about how to meet these needs

4 What does the published literature tell us about EB and psychological function?

5 Adults Andreoli, Mozzetta, Angelo, Paradisi, Foglio Bonda(2002) 60% of respondents to have good emotional development 25% showed significant psychopathology Tabolli, Sampogna, Di Pietro, Paradisi, Zotti, Castiglia, Zambruno, Abeni(2009) 32% reported significant psychological stress Psychological stress was associated with quality of life Family strain was associated with skin severity

6 Containing the practical impact of EB Disabling effects of EB Physical limitations on normal behaviours Disfigurement Understanding of EB Their own understanding Heredity EB as a personal experience Health care professionals

7 Children said 28% reported clinically significant anxiety 25% reported clinically significant problems with self-worth Slightly less depression, anger and behaviour problems Significantly better than normal population in several areas including peer relationships Parents said 46% had clinically significant problems with anxiety and depression 40% had peer relationship difficulties

8 8-11 year olds with EBS Being different and normal at the same time Being a burden (even positive attention can highlight someone s difference) Visibility and contagion Lack of understanding

9 year olds with mixed EB Itch and pain Barrier to participation in normal life activities Lack of understanding from others Being different

10 EB is NOT a mental health condition There appears to be an increase risk of experiencing psychological difficulties Majority of people with EB do not appear to reach clinically significant levels However, life with EB involves profound and complex emotional challenges Careful assessment, especially with children, is important

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12 Barrier to engaging in normal activities of life Effect of appearance and lack of understanding on social interactions Feeling different Managing EB in partnership with health care professionals

13 Significant Association Pain Gastro-enterological problems No association EB sub-type area of skin unhealed Family/maternal stress related to area of skin unhealed

14 EB acts as a Risk Factor EB factors most likely to be associated with psychological difficulties HOWEVER The nature of the risk factor will be idiosyncratic The nature of the response will be idiosyncratic What about resilience factors

15 Woman with Polio I know my awareness of people has deepened and increased; those who are close to me can count on me to turn all my mind and heart and attention to their problems. I could not have learned that dashing all over a tennis court (p.7, Goffman, 1963)

16 Rachel: maybe if I didn t have EB then, I don t know, maybe I d be making (sarcastic) little comments so maybe it is kind of good that I have it so I know not to do those things. I don t know, maybe I d be more different. I could be spiteful or something like that. Kerry:Some people aren t very nice to me, (but) I treat them how I would like to be treated, not how they re treating me.

17 Assess carefully using multiple sources of information Pay attention to pain and gastro problems Don t ignore people with less severe EB Don t just look for diagnosable mental health problems

18 What impact on key domains of life Physical well-being Resource security Forming and maintaining social relationships Ability to manage independent tasks of daily living Mastery e.g. education, sports, other skills Sense of self, self-worth, self in relation to the world

19 Top Tips

20 Asking the right questions: He who asks a question is a fool for five minutes; he who does not ask a question remains a fool forever What are the needs and wants of each patient? How well are you meeting them? How do you know? Who needs the help? How is the help best delivered? Old Chinese Proverb

21 Expression of emotion doesn t mean that there s a problem It s okay to feel sad, worried, despairing about life/eb BUT Important that there is support and facilitation of safe emotional processing? Referral when thoughts feelings are interfering with the patient s well-being/life

22 One of the most important relationships in the patient s life What kind of relationship does the patient and carer(s) want with the team? Is the team/professional being a good relationship partner? How is the team/professional being looked after?

23 Providing a service that develops strengths rather than treating weaknesses Sharing common goals Acknowledging expertise in all parties Working collaboratively Acknowledge differences Resolving conflicts

24 The social world can be hard on people with a medical condition Focusing on changing the person can place unfair responsibility on them as the problem Effecting widespread social change is difficult for individual clinicians Psychological input can help the individual to navigate a difficult world

25 Patients with EB and their Parents