Psychosocial Perspectives of Scoliosis

1. Psychosocial Perspectives of Scoliosis Mr. Darren Flynn1*, Dr. P. van Schaik*, Dr. A. van Wersch*, Mr. S. Papastefanou**, and Dr. J. Bettany-Saltikov*** 1presenting researcher * Psychology Section, University of Teesside ** Department of Orthopaedics, Middlesbrough General Hospital *** School of Health and Social Care, University of Teesside 26th Feb 2004

2. Anatomy of the Spine The spine is a column of 33 vertebrae, arranged in 5 regions • Cervical spine (neck) • Thoracic spine (upper back) • Lumbar spine (lower back) • Sacral spine • Coccyx (Tail bone)

3. When a normal spine is viewed from: Behind the back looks straight - the trunk symmetrical The side - curves are seen in the neck, upper and lower trunk Upper trunk - rounded contour called kyphosis Lower trunk - reverse direction of the rounded contour called lordosis Certain amounts of lordosis (neck & low back) and upper back kyphosis is normal - needed to maintain trunk balance over the pelvis Deviations may reflect abnormal kyphosis or lordosis or, more commonly, SCOLIOSIS

4. Scoliosis Defined • Described by Hippocrates in 500 BC • Derived from the Greek word for curvature • A 3-D lateral curvature of the spine (back-front, side-to-side & top-to-bottom)measuring 10 degrees or greater • Primarily develops in childhood & adolescence

5. Prevalence is greater in females • 4 per 1,000 require specialist supervision • 1 in 1,000 need hospital treatment usually for corrective surgery • Incidence and prevalence may be under reported as no national screening program since 1983 • If untreated can lead to damaged lung function, heart problems or disability when the upper (chest) part of the spine is curved

6. Assessment of Scoliosis Adam's Bend Test Radiographic Imaging Person asked to bend over from the waist - keeping the legs and arms straight and palms together Posteroanterior X-ray of the thoracic and lumbar spines (a standing up view from the back of the spine)

7. Assessment of Scoliosis

8. Aetiology of Scoliosis • Scoliosis is notcaused by: • Carrying heavy items • Athletic involvement • Sleeping/standing postures • Minor lower limb length inequality • Conditions known to cause spinal deformity: • Congenitalspinal abnormalities (present at birth) • Neurological disorders (Neuromuscular Scoliosis) • Genetic conditions (e.g. Marfan’s Syndrome) • Genetic predisposition - approximately 30% of people with idiopathic scoliosis have an affected first degree relative with scoliosis

9. Types of Scoliosis Syndromic Scoliosis The curvature is part of a recognised disease pattern i.e. cause is known) • Congenital Scoliosis Abnormal vertebral formation present at birth • Neuromuscular Scoliosis Muscular dystrophy, Myelodysplasia (spina bifida), Cerebral Palsy Idiopathic Scoliosis In more than 80% of scoliosis cases, a specific cause is not found and such cases are termed idiopathic, i.e., of unknown cause

10. Treatments for Scoliosis • Active Monitoring (watchful waiting) • Surgery (posterior (back) or anterior (front) spinal fusion with instrumentation and bone grafting from a rib) • Body brace (orthoses) • Plaster cast • Complementary Treatments

11. Body Brace Boston Brace • Used with skeletally immature people with significant growth remaining • Mainly used to halt curve progression • Can be used before or after surgery • Worn for up to 23.5 hrs per day Milwaukee brace, worn after spinal fusion to hold the spine in place

12. Plaster Cast Used before after surgery Localiser plaster designed to elongate the spine while decreasing the curve by lateral pressure. Plaster jacket with turnbuckles. The turnbuckles were turned a little each day to stretch the spine.

13. Complimentary Treatments • Exercise, osteopathy, chiropractic, physiotherapy, reflexology, acupuncture, neuro-stimulation • No reliable evidence that these techniques can make any difference to curvature that is progressive • Potentially most useful if a person is experiencing backache or pain

14. Psychosocial Aspects of Scoliosis Physical conditions such as scoliosis are frequently accompanied by psychological, emotional and social problems (or ‘psycho-social’ for short); such as: • Negative self-image • Low self-confidence • Increased risk of mental health problems • Social isolation • Problems with families/partners/peers • Problems at school, college and university • Problems at work

15. Identification of factors influencing psychosocial adjustment may facilitate completion of the developmental tasks suggested by Shen (1980) • Gaining independence from adults • Conformity with peer attitudes and behaviour • Identity formation • Developing meaningful social interactions with significant others

16. The peak incidence and treatment of scoliosis is during adolescence • This period is associated with: • Heightened sensitivity to physical changes (appearance of secondary sex characteristics) 2. Pre-occupation with body image and self-perception The above all impact on psychosocial adjustment and personality development

17. Mental Health Compared to adolescents without scoliosis, research has found that adolescents with scoliosis report: • More unhappiness, depression and lower self-esteem (Freidel et al., 2002) • Lower general mental health (Gotze et al., 2002) • More suicidal thoughts (Payne et al., 1997) • Lower Body Mass Index that may indicate the presence of eating disorders (Smith et al., 2002)

18. Social Activity Compared to adolescents without scoliosis, research has found that adolescents with scoliosis report: • Greater problems with social events (Gotze et al., 2002) • Fewer interactions with friends (Payne et al., 1997)

19. Body Image • Lower satisfaction with appearance (Noonan et al., 1997; Payne et al., 1997) • Restricted choice of clothing (Gratz & Papalia-Finlay, 1984) • Lower physical attractiveness (Liskey-Fitzwater et al., 1993)

20. Psychosexual Functioning • Orvomaa (1998) • People with AIS marry and have children later in life; have fewer satisfying sexual relationships than age-matched ‘healthy’ controls • Clayson et al. (1987) • People with scoliosis receiving surgery or brace treatment showed higher levels of sexual satisfaction than healthy controls • Andersen et al. (2002) • People with AIS adversely effected social contacts including those with the opposite sex, both during and after treatment

21. Family Relationships • Forstenzer and Roye (1989) • Parental guilt • Children may feel resentment towards the parent with scoliosis • Fear of children inheriting condition (Orvomaa, 1998)

22. Problems with Previous Research • Majority of the psychosocial research done using people from North America and Continental Europe • Due to differences in culture and health care system the findings may not be applicable to people in the UK • Low numbers of people taking part in research studies • Focuses on adolescents, and ignores the influence of the family • Limited number of areas investigated

23. Stress and Coping • Perhaps the most crucial area that may underpin all the psychosocial problems associated with scoliosis • Relying upon particular types of coping is associated with positive, others with negative consequences • Stressors – anything that a person perceives as threatening, challenging, distressing, worrying or causing anxiety • Coping - actions, thoughts and/or emotions that a person uses in an attempt to deal with stressors

24. Diagram of Coping with Stress COPING RESPONSE COPING STYLE COPING FUNCTION STRESSOR PERSON-RELATED FACTORS

25. Coping Styles Groups of behaviours, emotions, or thoughts that are similar in their action; for example: • DENIAL (refusing to acknowledge the event was real, and had not happened) • EMOTIONAL RELEASE (shouting, crying) • OPTIMISM (taking a positive viewpoint on the problem, and that things will work out in the future) • EMOTIONAL SOCIAL SUPPORT (talking to friends and family) • SOCIAL COMPARISON (comparing themselves with others (real / imaginary) in a similar situation to themselves)

26. Coping Function Coping function refers to what a person believed a coping style achieved for them psychologically • APPROACH (styles related to direct problem-solving) • EMOTIONAL REGULATION(dealing with the emotional conditions created by stressors) • REAPPRAISAL (enables the reinterpretation of a stressors meaning to enable a solution to be found) • AVOIDANCE (enables a person to deny a problem exists) e.g. a person uses a copy style of DENIAL, which he/she believes will perform a function of AVOIDANCE or EMOTIONAL REGULATION Approach/reappraisal related to better psychosocial outcomes

27. Previous Coping Research • Establishing a daily routine was found to help people with scoliosis cope with wearing a brace (MacLean et al., 1989) • Information gathering and maintaining independence (Fabian, 1985) • People with scoliosis use emotion and avoidance coping (Kahanovitz et al., 1984; Nathan, 1978) • Reliance upon and avoidance coping is associated with negative psychosocial consequences such as poor mental health

28. Current Study Aims • Identify main psychosocial stressors experienced by people with scoliosis and their families in the UK • Identify patterns and differences/similarities in coping used by people with scoliosis and their family members • Determine if person-related factors (e.g. age, gender and treatment received), body image, acceptance of scoliosis, health-related quality of life and pain are related to patterns of stress and coping

29. Study Methods We are currently asking people with scoliosis and members of their family to complete a questionnaire that requests information on: • Person-related factors (e.g. age, gender; type and degree of curve) • Stress • Coping (Coping Styles and Coping functions) • Health Related Quality of Life (sleep problems, back pain, back flexibility and social interactions) • Perceived Body Image • Health Locus of Control (whether a person considers that their health is due to external or chance factors) • Acceptance of Scoliosis • Pain Experiences

30. How Would the Results be Used? • Psychological treatments that increase the use of positive coping in order to deal with the psychosocial impact of scoliosis • Information Materials • Multidisciplinary Scoliosis Team

31. Ψ ical Treatments to Increase Use of Positive Coping

32. Information Materials Quality, clear, unbiased and up-to-date information (pamphlets, videos, computer programs and Internet); for example: TREATMENT • Braces / plaster cast • Surgery • Scoliosis-Friendly Exercise AFTERCARE • Building muscle tone • Possible impact on future quality of life (e.g. pain) • Information on how to cope with emotional/psychological problems

33. Information Materials (cont’) Information also helps to: • Reduce fear and anxiety • Enables people to prepare mentally for challenges in the future • Raise a person’s level of knowledge to enable participation in shared decision-making with doctors

34. Conceptual Model of Shared Decision-Making Patient Physician Patient & Physician Experienced Symptoms Act on Decision Apply Choice Strategy Perceived Problem Presented Problem Domain Knowledge Perceived Problem Generate Alternatives Domain Knowledge

35. Multi-Disciplinary Scoliosis Team A range of health professionals who are ‘knowledgeable’ in issues affecting people with scoliosis and their families: • Medical doctors (in particular GPs) • Psychologists • Physiotherapists • Occupational therapists • Nurses (GP practices and community) • Health visitors • Midwives • Social workers • Counsellors

36. Summary • Previous research has shown that scoliosis has a negative impact upon psychosocial functioning of people with scoliosis and their families The results of our research would be used to: • Assess the psychosocial functioning of people with scoliosis and their families in the UK before, during and after treatment • Development of psychosocial interventions to reduce harmful coping patterns • The development of a ‘multidisciplinary’ approach to the treatment of scoliosis • Give people with scoliosis ‘a voice’ that raises awareness of scoliosis and will help in making scoliosis a higher priority in the health care system

37. Darren Flynn, Research Fellow School of Social Sciences and Law The University of Teesside Middlesbrough Tees Valley, TS1 3BA Telephone: 01642 34(4487) Email: d.flynn@tees.ac.uk Project Web site: http://sss-studnet.tees.ac.uk/psychology/scoliosis/

38. Class Exercises