Psychological aspects of scleroderma

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1 Psychological aspects of scleroderma Alex Clarke Consultant Clinical Psychologist Department of Plastic Surgery Royal Free Hospital London 17 May 2014

2 Psychological aspects of scleroderma Impact of living with a long term condition Impact of visible changes in appearance (Amin et al 2011) Impact on Quality of Life How can psychology help?

3 How can a psychologist help? There are two ways we can help someone with a long term condition: 1. Try to improve the objective problem (which is what the doctor does) 2. Try to reduce the way the problem interferes with day to day life (which is what the psychologist does)

4 TREATMENT GOALS Distress C A B Objective appearance

5 Is psychology effective? Immunology Primary immunodeficiency: impact of 8 session CBT on clinical outcomes (Mari Campbell)

6 Is psychology effective? Dermatology Impact of 8 session CBT/schema therapy on dermatology clinical performance indicators, DLQI & PASI (Alex Mizara)

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8 Challenges reported by many people living with a visible difference: Staring, teasing, bullying, unsolicited questioning Feeling judged, being avoided Loss of social anonymity, Treatments might be long, stressful, repeated: involve complex decision making institutional gaze : individual s experience of the intense scrutiny and constant involvement of health professionals in their lives Appearance-related anxiety

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10 Appearance anxiety can affect behaviour AVOIDANCE AND CHECKING Pre-occupation with appearance Camouflage, safety behaviours Avoiding social situations Meeting new people or where likely to feel the centre of attention Limited involvement in other activities Avoiding having photos taken Self-imposed isolation Avoiding sex and intimacy

11 Mass Media

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14 Not everyone is negatively effected by visible difference Some people who have an unusual appearance (or visible difference) would not want to change their looks and, despite the challenges they face, many adjust well.

15 What factors are associated with positive adjustment? The ARC study (Rumsey et al 2009) 1265 adults with a variety of disfigurements Comm (n=615) and Clinic (n=650) 68.5% female, 28.0% male, 3.5% not stated Mean age = 47.3 yrs (range=18-91 yrs old, sd 16.7 years) 65% reported significant levels of appearance & social anxiety & social avoidance (DAS).. but 35% did not

16 The psychosocial impact of a visible difference is not associated with: The person s age Their gender The size of the visible difference The cause of the visible difference. Disguisability How long they ve had a visible difference

17 Adjustment IS strongly predicted by psychosocial factors: Optimism Social acceptance & support from family & friends How noticeable they think it is to other people A person s own beliefs & thoughts about appearance also make a difference, including: The importance they place on appearance & how much they invest in appearance (salience & valence) compared with other attributes

18 Optimism

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20 Websites & leaflets Changing Faces have useful resources for everyone concerned about what they look like.

21 Self-help Self help texts designed to explain body image concern and help people to understand and change their behaviour

22 Maintenance cycle A COGNITIVE BEHAVIOURAL MODEL BELIEFS PHYSIOLOGY BEHAVIOURS FEELINGS

23 A COGNITIVE BEHAVIOURAL MODEL Maintenance cycle BELIEFS I must always look immaculate, I don t look like other people, I am deformed, to be successful I must be beautiful PHYSIOLOGY BEHAVIOURS FEELINGS

24 A COGNITIVE BEHAVIOURAL MODEL Maintenance cycle BELIEFS I must always look immaculate, I don t look like other people, I am deformed, to be successful I must be beautiful PHYSIOLOGY BEHAVIOURS FEELINGS Mirror gazing, social avoidance, avoid intimacy ; safety behaviours: big jackets, make up, excessive grooming, asking for reassurance

25 A COGNITIVE BEHAVIOURAL MODEL Maintenance cycle BELIEFS I must always look immaculate, I don t look like other people, I am deformed, to be successful I must be beautiful PHYSIOLOGY BEHAVIOURS FEELINGS Mirror gazing, social avoidance, avoid intimacy ; safety behaviours: big jackets, make up, excessive grooming, asking for reassurance Anxious, lonely, despairing, unhappy, disgusted, ashamed, angry

26 A COGNITIVE BEHAVIOURAL MODEL Maintenance cycle BELIEFS I must always look immaculate, I don t look like other people, I am deformed, to be successful I must be beautiful PHYSIOLOGY BEHAVIOURS Heart races, palpitations, rapid breathing, faintness, sweaty, blushing FEELINGS Mirror gazing, social avoidance, avoid intimacy ; safety behaviours: big jackets, make up, excessive grooming, asking for reassurance Anxious, lonely, despairing, unhappy, disgusted, ashamed, angry

27 Online Interventions

28 Face IT & YP Face IT Target barriers to current intervention: Few specific interventions for individuals with appearance concerns (Bessell & Moss, 2007) Face-to-face therapy often based in large towns / cities Physical disability Social anxiety Sense of stigma surrounding therapy Convenient: don t have to miss school / work

29 Programme content Education: living with a visible difference, normalising & validating concerns Social skills training Anxiety management CBT: cognitive restructuring, graded exposure to challenging social situations Supervised by HPs

30 Filming social skills videos

31 Anxiety Ratings by Condition

32 Appearance Concern Ratings by Condition

33 SPIN International collaboration Developing online resources Bespoke intervention for scleroderma