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The Social Consequences of Facial Disfigurement

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The Social Consequences of Facial Disfigurement THE SOCIAL CONSEQUENCES OF FACIAL DISFIGUREMENT MICHAEL JOHN HUGHES Submitted in fulfilment of the regulations for the degree of Doctor of Philosophy in the Department of Social Policy July 1991 University of York THE SOCIAL CONSEQUENCES OF FACIAL DISFIGUREMENT CONTENTS Page Introduction 1 PART I: SPOILED IDENTITY Chapter One The Sociology of Stigma 20 Chapter Two An Anthropological View 62 Chapter Three Professional Perspectives 123 Chapter Four Voices of Experience 201 PART II: HELPING DISFIGURED PEOPLE Chapter Five The Mayo Clin-4 c 2'7 Chapter Six Mutual Help Groups PART III: AN EMPIRICAL ENQUIRY Chapter Seven Methodology 309 Chapter E i ght The Experience o f Illness and Treatment 322 Chapter Nine: SJr\ival 387 Cater Ter: One Year Later 3q9 Chapter Eleven: Testing the Hypotheses 473 Conclusion 478 APPENDICES I Interview Schedules 516 II Videotape: Coming to Terms with Oral Cancer 539 BIBLIOGRAPHY 540 LIST OF TABLES 2.1 Frances Macgregor's 1967 Sample 3.1 Professional Contributions 3.2 Summary of Toronto Papers 3.3 Empirical Studies of Patients with Head and Neck Canoe- 3.4 Other Empirical Studies 3.5 Theoretical Studies 3.6 Empirical Studies of Head and Neck Cancer 3.7 Sela and Lowental - Age Distribution 3.8 David and Barritt - Economic Status of Sample 3.9 Arndt et al. - Parent Ratings of Surgery 3.10 Arndt et al. - Independent Ratings of Surgery 6 . 1 Characteristics of Mutual Help Groups Empirical Sample: 8.1 Gender of Patients 8.2 Age of Patients 8.3 Age Distribution of Patients 8.4 Social Class 8.5 Social Class by Age - Male Patients 2.6 Social Class by Age - Female Patients 8.7 Members of Household 8.8 Time Before Treatment That Patient Was Aware That Condition Existed. 8.9 Who Identified the Problem? 8.10 Length of Stay in Hospital 8.11 Help Given by Professionals and Others 8.12 When Help Was Needed 8.13 Smoking 8.14 When Patient Last Worked 8.15 Impact on Job (for those economically active 8.16 Work Performance 2.17 Income Changes 8.18 Changes in Expenditure 8.19 Managing Financially 2.2C Shopping 2.21 Going Out to Entertainment 8.22 Carrying Out Home Responsibilities 6.23 Relations with Spouse 8.24 Satisfacton with Living Environment 8.25 CF-ance of House and Satisfaction with Living En\ironmert. 2.26 Use of Community Resources 6.27 Ace and Social Functioning 8.28 Gender and Social Functioning 8.29 Area and Social Functioning 2.30 L-ing Situation and Socia l Functioning 8.3 1 Socia l Class and Social Functioning = .32 Outcome of Surgery and Soc-al Functioring 8.33 Current Feeling and Social Functioning 8.34 Outlook and Social Functioning 8.35 Level of Enthusiasm for Life 8.36 Level of Fulfilment 8.37 Level of Optimism 8.38 Age and Outlook 8.39 Gender and Outlook 8.40 Living Situation and Outlook 8.41 Social Class and Outlook 8.42 Satisfaction with Appearance - Past and Present 8.43 Difference in Satisfaction with Past and Present Appearance 8.44 Age and Change in Satisfaction with Appearance 8.45 Gender and Change in Satisfaction with Appearance 8.46 Living Situation and Change in Satisfaction with Appearance 8.47 Social Class and Change in Satisfaction with Appearance 8.48 Outcome of Surgery and Change in Satisfaction with Appearance 8.49 Current Well-being and Chance in Satisfaction with Appearance 8.50 People Seen and Change in Satisfaction with Appearance 8.51 Outlook and Change in Satisfaction with Appearance 8.52 Changes in People's Attitude to Patient 8.53 Attitude of Others and Change in Satisfaction with Appearance 9.1 Age and Survival 9.2 Gender and Survival 9.3 Social Class and Survival 9.4 Area of Residence (at First Interview) and Survival 9.5 Household Composition and Survival 9.6 Smoking and Survival 9.7 Success of Original Treatment and Survival 9.8 General Feeling of Well-being and Survival 9.9 Outlook (at First Interview) and Survival 9.10 Satisfaction with Post-operative Appearance and Survival 10.1 Age Distribution - Second Interview 10.2 Age Distribution - First and Second Interviews 10.3 Housing Tenure 10.4 Area of Residence - First Year's Description Compared to the Second Year 10.5 Satisfaction with Standard of Living 10. 7 Further Anticipated Treatment 10.8 When Help Was Needed - The Views of Those Who Received Further Treatment 10.9 Since Original Illness and Treatment, Does Patient Feel Better or Worse? 10.10 Consumption of Alcohol 10.11 State Benefits Received - at Second Interview 10.12 Carrying Out Home Responsibilities - a Year On 10.13 Relations with Spouse - a Year On 10.14 - Use of Community Resources - a Year On 10.15 Age and Social Functioning 10.16 Gender and Social Functioning 10.17 Isolation and Social Functioning 10.18 Social Class and Social Functioning 10.19 Well-being and Social Functioning 10.20 Outlook at First Interview and Social Functioning 10.21 Outlook at Second Interview and Social Functioning 10.22 Change in the Attitude of Others and Social Functioning 10.23 Gender and Change in Social Functioning 10.24 Living Situation and Change in Social Functioning 10.25 Social Class and Change in Social Functioning 10.26 Outlook (at First Interview) and Change in Social Functioning 10.27 Outlook (at Second Interview) and Change in Social Functioning 10.28 Change in Outlook and Change in Social Functioning 10.29 Day-to-day Mood 10.30 Sense of Fulfilment 10.31 Attitude to the Future 10.32 Age and Outlook (Second Interview) 10.33 Gender and Outlook (Second Interview) 10.34 Living Situation and Outlook (Second Interview) 10.35 Social Class and Outlook (Second Interview) 10.36 Area and Outlook (Second Interview) 10.37 Tenure and Outlook (Second Interview) 10.38 Satisfaction with Living Situation and Outlook (Second Interview) 10.39 Interviewer Opinion of Living Situation and Outlook (Second Interview) 10.40 Well-being and Outlook (Second Interview) 10.41 Recurrence of Illness and Outlook (Second Interview) 10.42 Living Situation and Changed Outlook 10.43 Social Class and Changed Outlook 10.44 Tenure and Changed Outlook 10.45 Satisfaction with Living Situation and Changed Outlook 10.46 Interviewer Opinion of Living Situation and Changed Outlook 10.47 Recurrence of Illness and Changed Outlook 10.48 Changed Appearance and Changed Outlook 10.49 Satisfaction with Appearance - Past and Present 1C.50 Fe l t Difference Between Before Surgery and Time of Second Interview 10.51 Felt Difference Between Before Surgery and Time of Inte-view - Comparison of First and Second Irte-\iews. 10.52 Gender and Felt Appearance (Second Interview) 10.53 Househod Composition and Felt Appearance Second Interview) 10.54 Social Class and Felt Appearance (Second Interview) 10.55 General Well-being and Felt Appearance (Second Interview) 10.56 Outlook (Second Interview) and Felt Appearance (Second Interview) 10.57 Gender and Changed Acceptance of Appearance 10.58 Living Situation and Changed Acceptance of Appearance 10.59 Social Class and Changed Acceptance of Appearance 10.60 General Well-being and Changed Acceptance of Appearance 10.61 Change in Outlook (Between First and Second Interilew) and Changed Acceptance of Appearance ACKNOWLEDGEMENTS 71 patients with head and neck cancer contributed to this study; to them and to their families I am most especially grateful. Thanks are also due to the following: - Harry Charlton, maxillo-facial technician, who introduced me to the subject; - The plastic surgeons and oral and maxillofacial suraecns of Sunderland General Hospital, North Tees General Hospital, Middlesbrough General Hospital, Darlington Memorial Hospital, Newcastle General Hospital, St. James' Hospital, Leeds, The Royal Liverpool Hospital, Mord-lands General Hospital (Airdrie); - in particular, Peter Ward-Booth and Maria Robson, o' Sunderland General Hospital; - Professor Kathleen Jones, for her tireless, challenging and ever-helpful supervision; - Ian, Marjo r ie and David Jackson; - Frances Cooke Macgregor; - Christine Piff, Doreen and Peter Trust, and t n e Guinea Pigs Club; - The Nuffield Provincial Hospitals T r ust, who funded the study; - The Sir James I-nott Memorial Trust, who provided f und tc get the study started; - Richard Welbu r y, for his helpful introductions; - Pat Riley, Head Occupational Therapist at Leeds r:eneral Infirmary; - The social workers who carried out many of the fie'd -tLd I nterviews; - Newcastle Socia l Ser\ices Department, for making time aailable at the early stages n f the study; - Ba r nardn's, m ) present employers, or study lea\e in Summer 199^. - My family - Maureen and Andrew - for their support and tolerance; - My colleagues and friends, for their interest and encouragement. This list is not exhaustive; apologies to those who are omitted, and have helped so much; thanks to them also. ABSTRACT The face is important in human relationships, and a facially impaired person is therefore disadvantaged. In this study, the causes and social consequences of facial disfigurement are considered, the means whereby people adapt to revised appearance are explored, and an evaluation is made of professional help. Suggestions are given for improving the contribution of social work to rehabilitation. Four theoretical perspectives are presented. From sociology it is seen that facially disfigured people have difficulty in managing their differentness. From anthropology it is evident that those with facial disfigurement encounter problems in their social relationships. An analysis of professional literature shows the need for professionals to be sensitive to the vulnerabilities of the patient, and the need for open communication between professionals. The social impact of surgery and disfigurement on people's lives are evaluated. Lessons learned from people who have been disfigured are drawn out, including points of stress, and ways in which individuals have managed them.
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