Lecture 4: Health Psychology and Physical Illnesses II

1. Lecture 4: Health Psychology and Physical Illnesses II Dr. Antoinette Lee The University of Hong Kong

2. Outline • Psychological reactions to terminal illness • Kubler-Ross’ Theory • Cancer • Psychological impact on the patient • Needs of cancer patients • Psychological intervention for cancer patients Health Psychology Module, Spring 2005 Antoinette Lee

3. Kubler-Ross’s Theory Five predictable stages as individuals adjust to the prospect of death: • Denial • Anger • Bargaining • Depression • Acceptance Health Psychology Module, Spring 2005 Antoinette Lee

4. Kubler-Ross’s Theory 1. Denial • Initial reaction • “My x-ray must have been mixed up with others” • Mostly lasts for a few days • Normal and adaptive • Maladaptive if prolonged • affects help-seeking and adherence to treatment • primitive and maladaptive defense masking anxiety without dealing with it properly and making it fade away Health Psychology Module, Spring 2005 Antoinette Lee

5. Kubler-Ross’s Theory 2. Anger • “Why me?” • resentment towards everyone who is healthy • express anger directly by being irritable or indirectly by being embittered Health Psychology Module, Spring 2005 Antoinette Lee

6. Kubler-Ross’s Theory 3.Bargaining • “When I’m such a good person, God would know” • abandons anger in favor of a different strategy : trading good behavior for good health • signs: a sudden rush of charitable activity or uncharacteristically pleasant behavior Health Psychology Module, Spring 2005 Antoinette Lee

7. Kubler-Ross’s Theory 4. Depression • Coming to terms with lack of control • “I know, I have no control anymore” • Coincide with tangible evidence that illness cannot be cured, worsening of symptoms • feels tired and nauseated • “anticipatory grief” - 2 stages • 1. come to terms with loss of past valued activities • 2. anticipate future loss • have functional value Health Psychology Module, Spring 2005 Antoinette Lee

8. Kubler-Ross’s Theory 5. Acceptance • “How should I live the days and prepare for the death?” • too weak to be angry and too accustomed to the idea of dying to be depressed • a tired, peaceful, though not necessarily pleasant calm • Preparing for death Health Psychology Module, Spring 2005 Antoinette Lee

9. Evaluation of Kubler-Ross’ Theory • Pointed out the counseling needs of those who are dying However, • Stages may not occur in suggested predetermined order • Does not fully acknowledge the importance of anxiety and fear throughout the dying process Health Psychology Module, Spring 2005 Antoinette Lee

10. Leading Causes of Death by Age Department of Health (2001) Health Psychology Module, Spring 2005 Antoinette Lee

11. Cancer Four main foci for health psychologists: • (1) Psychological factors related to development/initiation of cancer • (2) Psychological factors affecting course of cancer • (3) Psychological responses to cancer • (4) Psychological Intervention • Prevention through changing health behaviors • Psychosocial intervention for cancer patients Health Psychology Module, Spring 2005 Antoinette Lee

12. Psychological Factors Related to Initiation of Cancer • Health-compromising behaviors • On the whole, cancer is more related to lifestyle factors than genes • Cancer-prone personality (Type C personality) • Inhibited, oversocialized, conforming, compulsive, and depressive • Easygoing and acquiescent, repressing emotions that may disrupt social harmony or emotional functioning • Trouble expressing anger, anxiety and tension • Cause or consequence? Health Psychology Module, Spring 2005 Antoinette Lee

13. Psychological Factors Related to Initiation of Cancer • Stress • Evidence of link between exposure to stressor and cancer among animals an humans • Particular importance of social support • Affects both onset and progression of cancer • Married men and women tend to have lower rates of cancers (except for gender-linked cancers such as prostate and cervical cancer) • Social support + health habits • Physiological effects of stress • Depression • In itself or in interaction with other risk factors • Linkins and Comstock (1988): • 18.5-fold increase in risk for smoking-related cancers among smokers who are depressed, and 2.9-fold increase for non-smoking-related cancers Health Psychology Module, Spring 2005 Antoinette Lee

14. Psychological Factors Related to Course of Cancer and Prognosis • Screening and help-seeking (delay behaviors) • Adherence to treatment • Lifestyle factors • Will to live / fighting spirit • Personality • Polite, unaggressive, acquiescent versus combative and angry stance towards illness and medical professionals • Pessimism towards one’s situation • Stress • Social Support Health Psychology Module, Spring 2005 Antoinette Lee

15. Emotional Responses • Anxiety • Depression • Grief and bereavement • Anger • Guilt and self-blame • Shame • Shock and confusion Health Psychology Module, Spring 2005 Antoinette Lee

16. Psychosocial Impact of Cancer • Physical : • Physical deformity (scar, hair loss) • Loss of energy and strength • Pain and suffering • Potential loss of life • Psychological : • Self and body image • Loss of control • Loss of self-worth • Loss of independence • Dignity • For breast cancer patients: Loss of symbol of femininity Health Psychology Module, Spring 2005 Antoinette Lee

17. Psychosocial Impact of Cancer • Social : • Relationship • Restricted social activities • Alienation • Social and vocational discrimination • Need to deal with medical professionals • Spiritual : • Emptiness • Loss of inner peace and harmony • Loss of dreams • Loss of a sense of invulnerability Health Psychology Module, Spring 2005 Antoinette Lee

18. The Need to Cope with Multiple Stressors • Diagnosis • Pain and suffering • Fear of recurrence • Uncertainty over illness progression • Emotional reactions • Treatment choices and treatment • Restrictions in life, changes in lifestyle • Financial strain • Need to make adjustments in life plans • Stigma • self-esteem ………………… Health Psychology Module, Spring 2005 Antoinette Lee

19. Needs of Cancer Patients • Information • Pain management • Emotional and social support • Spiritual needs • Basic needs and the human dimension • And don’t forget the needs of their family members Health Psychology Module, Spring 2005 Antoinette Lee

20. Additional Issues • The patient’s whole life context • The illness is not the only aspect of the patient’s life; there are other concerns in which the illness is embedded in • CIPS tape on psychosocial information • Background characteristics of the patient • Age, life stage, SES, personality, social support network ……… Health Psychology Module, Spring 2005 Antoinette Lee

21. The Impact of Age on Illness Experience • Impact of age: • Different level of distress • Different forms of psychosocial needs • Age as a determining factor of patients’ depressive symptoms (Jason, 2004). • Interaction effect of age and illness/disability on depressive symptoms • Illness and associated disability caused more depressive symptoms when occurring earlier in life. Health Psychology Module, Spring 2005 Antoinette Lee

22. “Age” as a factor • Research on breast cancer patients demonstrated that “age” is a factor leading to different level of psychological distress and different psychosocial needs (Baider, Andritsch, Uziely, Goldzweig, Ever-Hadani, Hofman, Krenn & Samonigg, 2002). • Younger women with breast cancer: • more severe emotional distress than older women. • less successful in coping with treatment related side effects, maintaining a positive attitude & seeking support. • Older women with breast cancer: • a strong sense of hopelessness/helplessness. • fear and shame at becoming a burden to their children and relatives. Health Psychology Module, Spring 2005 Antoinette Lee

23. Impact of Age on Illness Experience of Patients with Colorectal Cancer • Sharing of preliminary findings from an on-going study on perceived stress and its determinants among younger and older patients with colorectal cancer Health Psychology Module, Spring 2005 Antoinette Lee

24. Impact of Age on Illness Experience of Patients with Colorectal Cancer • Younger patients experience more stress and are more distressed than older patients • Compared to older patients, younger patients have poorer body image and experience more negative social support • Body image and negative support • prominent and unique psychosocial needs • significant factors that contribute to stress and distress among younger patients • Such differences may be due to different life experiences and priorities in life Health Psychology Module, Spring 2005 Antoinette Lee

25. Psychological Intervention for Cancer Patients 1. Group-Based Psychosocial Intervention 2. Body-Mind-Spirit Intervention 3. Group Psychosocial Intervention for Patients with Gynecological Cancers Health Psychology Module, Spring 2005 Antoinette Lee

26. I. The Benefits of Group-Based Psychosocial Intervention • Spiegel and colleagues: • Conducted a series of RCT studies providing evidence that women with metastatic breast cancer who participated in one-year of supportive-expressive group therapy showed greater reduction in traumatic stress and mood disturbance, and long survival compared to those in the control group. See for example, Classen et al. (2001). Archives of General Psychiatry, 58, 494-501 and Spiegel et al. (1989). Lancet, 2, 881-891. Health Psychology Module, Spring 2005 Antoinette Lee

27. The Benefits of Group-Based Psychosocial Intervention • Multicenter RCT of effect of supportive-expressive group therapy on survival among metastatic breast cancer patients • 235 women with metastatic breast cancer • Supportive-expressive group therapy versus no control • No sig. difference on survival but SE group had greater improvement in mood and reduction in pain, esp. for women more distressed at baseline. Goodwin et al. (2001). New England Journal of Medicine, 345, 1719-1726. Health Psychology Module, Spring 2005 Antoinette Lee

28. The Benefits of Group-Based Psychosocial Intervention • RCT of effect of group psychosocial intervention on survival in women with metastatic cancer: • 66 women with metastatic breast cancer • Group psychological intervention (supportive + CBT) versus control • Lack of evidence on impact on survival at 5 years post-intervention Health Psychology Module, Spring 2005 Antoinette Lee Cunningham et al. (1998). Psycho-Oncology, 7, 508-517.

29. The Benefits of Group-Based Psychosocial Intervention • Group structured therapy intervention versus no-therapy control for early malignant melanoma • Intervention group: • Six weekly sessions • Health education, problem-solving, stress management, psychological support • At 6-months follow-up: patients in the intervention group showed: • Less depression • Less fatigue • Less confusion • Greater vigor • Greater use of active behavioral and cognitive strategies • Better immune function • Better survival in 6-year follow-up Health Psychology Module, Spring 2005 Antoinette Lee Fawzy et al. (1990). Archives of General Psychiatry, 47, 720-725.

30. Psychoeducational Groups versus Supportive Groups • Psychoeducational groups seem to have greater benefits compared to supportive groups • Cunningham and Tocco (1989): • Psychoeducational group: problem solving skills, relaxation and imagery, goal setting, lifestyle management • Supportive group: discussion and sharing of information • P group: significantly greater reduction in anxiety, depression compared to S group Health Psychology Module, Spring 2005 Antoinette Lee Cunningham & Tocco (1989). Patient Education and Counselling, 14, 101-114

31. Inadequacies of Existing Models of Psychosocial Intervention • Lack of a spiritual dimension • Cultural sensitivity? Health Psychology Module, Spring 2005 Antoinette Lee

32. II. The Body-Mind-Spirit Intervention • Physical state (body), emotions and social relationship (mind), and life values/ philosophy (spirit) are interconnected, and an equilibrium between the three elements constitutes one’s health and healing. Health Psychology Module, Spring 2005 Antoinette Lee

33. BMS Intervention Mind: emotions and social relationships HEALTH Spirit: life values/philosophy Body: physical state Health Psychology Module, Spring 2005 Antoinette Lee

34. BMS Intervention: Cultural Sensitivity • Incorporation of Chinese philosophies and health practices with Western psychotherapy • Western psychotherapeutic elements: • Cognitive reframing • Emotional expression • Social support • Relaxation Health Psychology Module, Spring 2005 Antoinette Lee

35. BMS Intervention: Cultural Sensitivity • Chinese / Eastern philosophical values of: • Accepting life as unpredictable • Endurance of pain and hardship • Finding meaning in suffering • Growth and transformation through suffering • Letting go • Being in harmony with oneself, life, and the universe • Chinese traditional health practices • Qigong • Meditation • Acupressure • Herbal soup Health Psychology Module, Spring 2005 Antoinette Lee

36. BMS Intervention: Principles (1) normalization of traumatic experiences (2) letting go and acceptance of unpredictability of life (3) forgiveness and self-love (4) social support and commitment to helping others Health Psychology Module, Spring 2005 Antoinette Lee

37. BMS Intervention: Format • Group Based • Normalization • Expression of feelings • Sharing • Empowerment • Social support Health Psychology Module, Spring 2005 Antoinette Lee

38. BMS Intervention: Medium of Intervention • Uses a variety of medium • Sharing • Reading • Singing • Physical activity • Meditation • Drawing • Experiential learning • Self reflection Health Psychology Module, Spring 2005 Antoinette Lee

39. Efficacy of BMS Intervention for Breast Cancer Patients: Some Preliminary Evidence • BMS intervention • 5 weekly sessions • Each session lasts for 3 hours • Instructed to make a drawing of her cancer: • “Please make a drawing of your cancer” • Pre-intervention & post-intervention • 17 patients completed both pre and post-intervention drawings • Outcome measure: changes between the pre-intervention and the post-intervention drawings • adopting the patient’s own interpretation as a criteria for analysis Health Psychology Module, Spring 2005 Antoinette Lee

40. III. Psychosocial Group Intervention for Patients with Gynecological Cancers Gynecological Cancers: • Cancer of the: • Cervix • Ovary • Uterus • Vulva Health Psychology Module, Spring 2005 Antoinette Lee

41. Characteristics of Gynaecological Cancers • From the very young to the very old • Unexpected • Implication on fertility • Treatment-related menopause • Progression • Painful course of treatment • Recurrence Health Psychology Module, Spring 2005 Antoinette Lee

42. Psychosocial Needs of the Patients • Information • Too little • Too much • Emotional support • Sense of alienation and isolation • Outlet for emotions • Acknowledgement and expression • Guilt and self-blame • Anger • Helplessness • Hopelessness Health Psychology Module, Spring 2005 Antoinette Lee

43. Psychosocial Needs of the Patients • Fear and anxiety • Side effects, pain & suffering, recurrence, metastasis, death • Pain: little things count • Depressed mood • Body image and sexuality problems • Concern over fertility and treatment-related menopause • Communication with health care professionals • Dignity and respect • Role model! Health Psychology Module, Spring 2005 Antoinette Lee

44. Psychoeducational Groups versus Supportive Groups • Psychoeducational groups seem to have greater benefits compared to supportive groups • Cunningham and Tocco (1989): • Psychoeducational group: problem solving skills, relaxation and imagery, goal setting, lifestyle management • Supportive group: discussion and sharing of information • P group: significantly greater reduction in anxiety, depression compared to S group Health Psychology Module, Spring 2005 Antoinette Lee Cunningham & Tocco (1989). Patient Education and Counselling, 14, 101-114

45. The Nature of the Intervention • Group-based • Setting • OPD • Tied in with medical follow-up • Format • Open group • 6 bi-weekly sessions, each with a predetermined theme • One and a half hours • Members • Role of psychologist and nurses Health Psychology Module, Spring 2005 Antoinette Lee

46. Aims of the Intervention • Psychoeducation • Sharing and expression of emotions • Social support • Sense of comradeship • Empowerment • Generation and learning of cognitive and behavioral coping skills • Sense of control • Detoxification of death • How to LIVE with the cancer • Re-prioritising life goals Health Psychology Module, Spring 2005 Antoinette Lee

47. Aims of the Intervention • Focusing on strengths and the positive • Finding (Rediscovering) meaning in life • Developing a positive perspective • Willingness to receive help • Minimize the sense of victimization • Managing stress in daily life • Enhance treatment and recovery • Longer survival? • Living better vs living longer Health Psychology Module, Spring 2005 Antoinette Lee

48. Main Themes • Themes that repeatedly come up during the sessions • Positive aspects of the experience • Role of family • Family as source of support • Family as source of stress • Normalization: leading a normal life • Mutual support • Self-reliance versus self blame & victimization • Take one day at a time • Sense of control • Worry over recurrence • Do what you can to reduce chances of recurrence but accept that life is full of uncertainties • Fighting spirit Health Psychology Module, Spring 2005 Antoinette Lee

49. Things to Note • Focus on the psychosocial aspects • Understanding the reciprocal relationship among the physical, the psychological, the social, and the spiritual • Enhancing a sense of control • Go at each member’s pace • Ensure group solidarity • Act as patients’ advocate • Cultural and gender sensitivity • Respect individual differences • Ongoing and good communication with the medical team Health Psychology Module, Spring 2005 Antoinette Lee

50. When A Group Member Dies • Denial • Collective grief • Allowing the pain to be felt • Keeping the group member alive • Remembering her and treasuring her • Remembering her in the group’s discussion • Keeping contact with her family members Health Psychology Module, Spring 2005 Antoinette Lee