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Psychosocial reactions of men with type I and type II diabetes Kee, Ronald David 1995

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PSYCHOSOCIAL REACTIONS OF MEN WITH TYPE I AND TYPE II DIABETES by RONALD DAVID KEE B.P.E., The Univers i ty of A l b e r t a , 1987 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS i n THE FACULTY OF GRADUATE STUDIES Department of Counsel l ing Psychology We accept t h i s thes i s as conforming to the^ rej^jia^eeV standard THE UNIVERSITY OF BRITISH COLUMBIA March 1995 @ R o n Kee, 1995 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of Coafr $ J & \ t\vj ? (y Au>\ojy The University of British Columbia Vancouver, Canada Date DE-6 (2/88) 11 Abstract The purpose of t h i s study was to explore the psychosocial experience of men with diabetes (Type I and I I ) . Five men with diabetes participated i n the study. Two of the participants had Type I diabetes, and the other three participants had Type I I . The study involved a taped, unstructured interview that asked the pa r t i c i p a n t s to describe t h e i r experience l i v i n g with diabetes. This interview was then transcribed and analyzed for themes. Theme statements were then generated and clustered into an exhaustive d e s c r i p t i o n of the experience of l i v i n g with diabetes. Participants were then presented with these findings for v a l i d a t i o n . The essential structure, or basic nature, of the experience of these men with diabetes was formulated. The findings of t h i s study were discussed i n r e l a t i o n to implications for further research and i n r e l a t i o n to counselling men with diabetes. To gain an understanding of l i f e with diabetes from the perspective of those who have experienced i t an existential-phenomenological approach was used. Twenty-nine (29) themes and six (6) categories emerged from the data u t i l i z i n g t h i s method. The categories include: emotional reactions; physical concerns; issues r e l a t e d to medical personnel; coping mechanisms; sexuality; and, other concerns. i i i TABLE OF CONTENTS ABSTRACT i i TABLE OF CONTENTS i i i LIST OF TABLES v i ACKNOWLEDGEMENT v i i Chapter 1 INTRODUCTION 1 S igni f icance of the Study 3 D e f i n i t i o n of Terms 5 Summary 6 Chapter 2 LITERATURE REVIEW 8 Introduction 8 Diabetes - B r i e f Facts 8 Needs S a t i s f a c t i o n 10 Psychosocial Issues 16 Sexual i ty 20 Self-Image 25 Summary 2 7 i v Chapter 3 METHOD 28 Par t i c ipants 3 0 Demographic Information 31 Phenomological Interview 3 4 Analys i s and Interpretat ion 3 6 Chapter 4 RESULTS 3 8 Formulation of Themes 38 Themes and Exhaustive Descr ipt ion 3 9 Essent ia l Structure 67 Summary 72 Chapter 5 DISCUSSION 7 3 Implications of Findings to 73 Related L i t e r a t u r e Limitat ions of the Study 78 Implications for Further Research 79 Implications for Counsel l ing 82 and Diabetes Education Summary 9 0 V References 93 APPENDIX A: Informed Consent 97 APPENDIX B: Par t i c ipant Information Form 99 APPENDIX C: Interview Format and Questions 100 L I S T OF T A B L E S T a b l e 1: D e m o g r a p h i c I n f o r m a t i o n f o r 33 E a c h P a r t i c i p a n t v i i Acknowledgement As with most things i n my l i f e there are many people who have offered support and encouragement. In t h i s endeavour there i s one person who has been there i n very low times, as wel l as i n very high t imes, Dr. Marv Westwood. Without h i s d i r e c t i o n , h i s ded ica t ion , h i s compassion, and h i s sense of humor I am not sure where I might be today. I only hope that others who may read t h i s paper have the opportunity to meet someone l i k e him i n t h e i r l i v e s . Other important people I want to acknowledge are my fami ly , near and f a r , Andr ia , and many c lose f r i e n d s . "Tim, I owe you lunch?" I want to thank Joyce Sharpe and Dr. Hugh T i l d e s l e y from St . Pau l ' s H o s p i t a l for t h e i r expertise and for he lping to promote t h i s study. There are many people who have touched me during t h i s chapter of my l i f e , and I must say i t i s the f i v e men i n t h i s study who shared t h e i r l i v e s with me who deserve the greatest applause. I thank-you for sharing with me the "ups and downs" associated with your diabetes . I t i s because of you that t h i s study i s now complete. Sometimes i t i s okay to t a l k to yourse l f so I w i l l take the opportunity to do that now, "Way to go Ron, I knew you could do i t . " 1 CHAPTER 1 INTRODUCTION We l i v e i n a world where people are c o n t i n u a l l y having to adjust to changing condi t ions . Many people are subjected to adapt to changes i n t h e i r p h y s i c a l and emotional heal th on a d a i l y basis due to a d i s a b i l i t y . Men with diabetes f a l l into t h i s category and that i s the focus of t h i s study. These men are faced with d a i l y s truggles to keep t h e i r blood sugars under c o n t r o l , maintenance of a healthy wel l -balanced d i e t , and t r y i n g to educate others about the way diabetes e f fec t s them while maintaining a p o s i t i v e a t t i t u d e . These are jus t a few of the challenges that are faced while on the r o l l e r - c o a s t e r r i d e presented by ones' d iabetes . This study w i l l focus on t r y i n g to bet ter understand the psychosocial experience of diabetes by men. The purpose i s to examine the reported experiences i n terms of the thoughts, emotions, and behaviours of these men. The perspect ive of men who have l i v e d with diabetes for at least f i ve years i s the 2 f o c a l po in t . In other words, i t i s a f i r s thand account of men with diabetes which i s c en tra l here. Why i s i t that men with diabetes often report f e e l i n g misunderstood by others? In what ways does having diabetes impact on t h e i r personal l i v e s both at an in trapersona l l e v e l and at an interpersonal l eve l? Which complications seem to impact most s trongly? What serv ices might be offered to help these men adjust to l i v i n g with diabetes? Are there c e r t a i n areas r e l a t e d to the wel l -be ing of men with diabetes that the medical profess ion addresses better than others? These questions h i g h l i g h t some of the issues that are encountered by men with diabetes . My in teres t i n t h i s top ic ar i ses from experiences I have had with people with d i s a b i l i t i e s . I have found that many i n d i v i d u a l s f ind i t very d i f f i c u l t to cope with a medical condi t ion that r e s u l t s i n the loss of some independence. Diabetes i s just one of many d i s a b i l i t i e s that f i t s t h i s category. I have a lso r e a l i z e d that the psychosocial adjustment to diabetes has not been explored i n d e t a i l . I t i s not s u f f i c i e n t to look s o l e l y at the phys ica l needs of the man with diabetes but rather to include care or serv ice r e l a t e d 3 to h i s emotional and psychological needs. S ign i f i cance of the Study This study i s being conducted because there i s a lack of psycholog ica l intervent ion i n medical se t t ings to a s s i s t i n d i v i d u a l s i n adjust ing to t h e i r d i s a b i l i t y or medical condi t ion (Smith, 1982). I t i s important to note that many people with a phys ica l d i s a b i l i t y cope we l l with t h e i r d i f f i c u l t i e s and emotions which may negate t h e i r need for psychological in tervent ion (Etherington, 1990). Once the experiences reported are more c l e a r l y known i t i s then poss ib le to consider which intervent ions (psychological) may be most h e l p f u l and how could they be provided. Research that has been conducted to date i n t h i s area of coping with diabetes has p r i m a r i l y been q u a n t i t a t i v e . There appears to be l i t t l e research that i s q u a l i t a t i v e i n nature. A d d i t i o n a l l y , issues r e l a t e d to male sexua l i ty have received very l i t t l e a t t e n t i o n . This study w i l l give meaning to the psychosoc ia l experience of l i v i n g with diabetes as t o l d from the point of view of those men who are d i a b e t i c . By taking t h i s approach we can begin to ident i fy common themes i n 4 t h e i r l i v e s . Having the p a r t i c i p a n t s t e l l t h e i r s t o r i e s w i l l enable a c l earer p ic ture to be formed of the day-to-day challenges faced by men with diabetes . Information gathered from t h i s study w i l l be use fu l from a counse l l ing framework, as wel l as from a t h e o r e t i c a l framework. From a counse l l ing perspect ive , we w i l l gain a better understanding of what men with diabetes are experiencing. Enhanced knowledge of the p a r t i c i p a n t ' s l i v e s w i l l allow for these i n d i v i d u a l s to perhaps gain access to services that have not been r e a d i l y a v a i l a b l e to them i n the past . Furthermore, the f indings may provide guidance and understanding to those men who do not have access to on-going support. F i n a l l y , t h i s study may a s s i s t the medical profess ion to provide a balance i n the prov i s ion of phys i ca l and psycho log ica l support to pat ients . From a t h e o r e t i c a l perspect ive , the knowledge gained from t h i s study w i l l add to the breadth that already ex i s t s i n r e l a t i o n to t h i s populat ion . U l t imate ly , the r e s u l t s of t h i s study w i l l al low for men with diabetes to l i v e a more f u l f i l l i n g l i f e . The hope i s with t h i s improved understanding that the r i d e on t h i s r o l l e r - c o a s t e r w i l l be smoother for these 5 i n d i v i d u a l s . D e f i n i t i o n of Terms The key terms which appear throughout the study are: Type I diabetes - a lso known as I n s u l i n -Dependent Diabetes M e l l i t u s (IDDM); Type I most commonly occurs i n juveni les but occas iona l ly i n adu l t s ; common signs at diagnosis are: frequent u r i n a t i o n , extreme t h i r s t and fat igue , weight loss with a normal or increased appet i te , and b l u r r e d v i s i o n (Appleton and Lange, 1995). Type II diabetes - a lso known as Non-Insul in -Dependent Diabetes M e l l i t u s (NIDDM); most common among adults (90 % of a l l d iabet i c s i n the United States ) ; many pat ients are r e l a t i v e l y asymptomatic i n i t i a l l y , e spec ia l ly with obese pat i ent s ; chronic sk in in fec t ions ; mild hypertension i s often present with obese pat ients ; can also be present with nonobese ind iv idua l s (Appleton & Lange, 1995). 6 medical personnel / diabetes educators - r e f er s to those profess ionals involved i n the care of men with diabetes; includes physicians / general p r a c t i t i o n e r s , nurses, d i e t i t i a n s , and s p e c i a l i s t s (endocrinologis t , u r o l o g i s t , e t c . ) . Throughout the text the p a r t i c i p a n t s i n t h i s study w i l l be r e f e r r e d to as men with diabetes, not as d i a b e t i c s or d iabe t i c men. Raymond (1992) supports t h i s not ion i n that he sees diabetes as not d imin i sh ing one's humanity, thus, i t i s important to remember that the person i s f i r s t a human and secondly a "diabet ic" . Summary The study explores the experience of men with diabetes . Themes i d e n t i f i e d from interviews with the p a r t i c i p a n t s w i l l give meaning to t h e i r experiences and concerns. In Chapter 2, the l i t e r a t u r e re levant to the study i s reviewed and c r i t i q u e d . In Chapter 3, the method used to c o l l e c t and analyze the data i s d iscussed. The r e s u l t s of the study, which are presented as i d e n t i f i e d themes, are provided i n Chapter 4. In the f i n a l chapter, the d i scuss ion , impl i ca t ions f o r counselling, l i m i t a t i o n s of the study, and conclusions are presented. References and appendi appear at the end of the study. 8 CHAPTER 2 LITERATURE REVIEW Introduct ion In t h i s chapter the areas reviewed include b r i e f fac t s about diabetes, needs s a t i s f a c t i o n , areas of p o t e n t i a l psychosocial concern for men, s exua l i ty , and se l f - image. Psychosocial concerns discussed include depression, g u i l t , d e n i a l , anxiety, fears , and the need for s o c i a l support. The review of l i t e r a t u r e provides a background to the issues men with diabetes must face throughout t h e i r l i f e with t h i s chronic medical c o n d i t i o n . Diabetes - B r i e f Facts Diabetes i s a serious disease that prevents the body from properly using energy stored i n foods. Diabetes i n Canada i s prevalent; over a m i l l i o n Canadians have i t and approximately 60,000 new cases are diagnosed each year (Canadian Diabetes A s s o c i a t i o n ) . There are many serious complications 9 associated with diabetes . I n s u l i n , medication, d i e t and exercise enable a person with diabetes to manage i t and reduce i t s impact. However, there s t i l l i s not a cure. An alarming s t a t i s t i c i s ha l f of a l l Canadians who have diabetes are not aware of i t (Canadian Diabetes Assoc ia t ion ) . I t i s for these reasons that i t i s e s s e n t i a l that a l l Canadians become more knowledgeable about diabetes. This includes people with diabetes , those without diabetes, diabetes educators, general p r a c t i t i o n e r s , counse l lors , coaches . . . you and I . As with most diseases or d i s a b i l i t i e s there are myths. To d i s p e l these myths people have to be educated. People with diabetes do not have a border l ine or mi ld case of diabetes, or "just a touch of sugar" i n the blood, they have diabetes ( R o l l i n s , 1992) . These terms re lay the wrong message. The simple f a c t , that the person with cons i s t ent ly high blood glucose readings has diabetes, i s denied. Diabetes i s a d e b i l i t a t i n g disease as character ized by i t s associated complicat ions . Macrovascular complications r e s u l t i n an increase incidence of heart disease and limb amputation, and 10 microvascular complications af fect p r i m a r i l y the eyes and kidneys ( T s a l i k i a n , 1990). Ul t imate ly , bl indness and rena l f a i l u r e r e s u l t . Hypertension i s very common i n i n d i v i d u a l s with Type II diabetes . I t becomes apparent that d iabe t i c complications can be devastat ing to the emotional and phys ica l wel l -being of i n d i v i d u a l s with diabetes , therefore, the condit ion should be taken very s e r i o u s l y . Needs S a t i s f a c t i o n Because the d i s a b i l i t y of diabetes impacts many of the bas ic human needs, i t i s important to review them. Five bas ic needs were postulated by Maslow. In order of p r i o r i t y they are: phys ica l needs, safety, love and belonging, esteem, and s e l f - a c t u a l i z a t i o n . The lower needs, or the phys io log i ca l needs, are meant to be g r a t i f i e d and not deprived i n order for g o a l - d i r e c t e d behaviours to emerge, thus, s a t i s f y i n g the higher order needs. P h y s i o l o g i c a l needs Se l f -preservat ion i s our most basic dr ive which r e s u l t s i n us making sure that we have enough c l o t h i n g , food, and she l ter to l i v e . F a i l u r e to meet these lower 11 l e v e l needs can be self-destructive as i t disrupts one's state of b i o l o g i c a l homeostasis. This i s es p e c i a l l y true for an ind i v i d u a l with diabetes. A person with diabetes i s fraught with structure to maintain a low blood glucose l e v e l . I f these l e v e l s are permitted to reach extreme highs (hyperglycemia) or lows (hypoglycemia) the r e s u l t can be devastating. There are both short and long term e f f e c t s i f one does not maintain the desired l e v e l as prescribed by t h e i r care-givers. Diabetic effects such as ketoacidosis; ocular complications (cataracts, retinopathy, glaucoma); diabetic nephropathy (renal disease); gangrene of the feet; diabetic neuropathy (peripheral and autonomic nerves); and skin and mucous membrane complications (Springhouse Corp., 1992; Tierney, McPhee, & Papadakis, 1995) may occur i f t h i s homeostasis becomes imbalanced. The i n d i v i d u a l with diabetes has to make l i f e - s t y l e changes upon diagnosis to meet the new physiological demands required by h i s or her body. Safety needs The desire for safety i s basic to every human being. Fear of the unknown i s common i n new s o c i a l or 12 p h y s i c a l s i t u a t i o n s . For t h i s reason, i t i s e s s e n t i a l that medical health profess ionals b u i l d a t r u s t i n g environment where a l l pat ients f ee l safe. The need for safety i s present whether one i s i n t e r a c t i n g one-on-one with another i n d i v i d u a l or as a member of a group. This safety i s r e l a t i o n a l i n nature i n that we need to t r u s t ourselves , to be trusted by others, and to t r u s t others (Trotzer , 1989). I f the phys ic ian or diabetes nurse, or any other care -g iver , bu i lds t r u s t , respect , and safety with pat ients i t w i l l increase the l i k e l i h o o d of c e r t a i n issues being discussed. In other words, men with diabetes may f ee l more comfortable d i scuss ing impotence, and other personal concerns with pro fe s s iona l s . Love and belonging A quotation by John E . Largients i n Trotzer (1989, p. 71), expresses t h i s need very w e l l . He wrote, "Not many people (sic) may be w i l l i n g to die for love these days. But you can' t escape the fact that m i l l i o n s are dying d a i l y for lack of i t . " This need i s important to consider i n diabetes education as many c l i n i c s use a group or classroom s e t t i n g . In c l i n i c s many ind iv idua l s w i l l not know 13 each other i n i t i a l l y so an atmosphere must be created where members f e e l accepted and open to share t h e i r true selves. I t i s f e l t that i f men f e e l they belong i n the group they may be more open to share t h e i r concerns and fears with the physician. Men with diabetes have the same need to f e e l loved as t h e i r non-disabled counterparts. This i s supported by Raymond (1992) who mentions, men with diabetes are humans f i r s t and t h e i r diabetes i s secondary. Since t h i s need to f e e l loved and a sense of belonging i s present, within the population of t h i s study, i t i s es s e n t i a l they are met. Men with impotence may f e e l they w i l l be unable to s a t i s f y t h e i r partner, or po t e n t i a l partner. The r e s u l t can be withdrawal from intimate relationships for fear of r e j e c t i o n or embarrassment. Thus, i t i s esse n t i a l that such concerns are openly addressed. Self-Esteem Maslow (1970) noted that self-esteem centers around seeking recognition from oneself and from others as a worthwhile person. Included i n t h i s need f o r self-esteem i s a combination of worth, respect, r e s p o n s i b i l i t y , and achievement. 14 Krauss, Lantinga, and Kelly (1990) found that men with diabetes who are impotent f e l t embarrassed, frustrated, depressed, and angry because of t h e i r condition. Ultimately, loss of e r e c t i l e function often signals the loss of self-esteem, thus, diminishing the man's sense of masculinity (Smith, 1982). F a r r e l l (1986) notes that most men spend t h e i r l i v e s performing or "proving themselves" whether i t be i n sports, on the job, or at sex. A man who has been s o c i a l i z e d i n t h i s manner w i l l desire performance that r e s u l t s i n success. In t h i s s i t u a t i o n , a man with diabetes w i l l most l i k e l y have a decrease i n s e l f -esteem over time. Long-term ef f e c t s of diabetes may r e s u l t i n him having to leave his job p r i o r to mandatory retirement or before he i s ready to, render him impotent, and only allow for "fun, non-competitive" sporting pursuits. R o l l i n s (1992) indicates that i t i s e s s e n t i a l for one not to deny that he or she has diabetes, therefore, there i s improved health through better care which i n turn leads to enhanced self-esteem. Daily attention to control diabetes can then be turned into a p o s i t i v e ; each day i s viewed as a new and e x c i t i n g challenge to 15 determine what works best i n the management of the disease. Research i n the area of diabetes indicates that some of the higher needs i n Maslow's hierarchy may not be met i n the l i v e s of men with diabetes. For example, Smith (1982) notes that many impotent men worry that t h e i r u n s a t i s f i e d partners may leave them for potent partners. These feelings may r e s u l t i n love and belonging, and esteem needs not being met i n these men. S e l f - a c t u a l i z a t i o n This i s the highest l e v e l of needs i n Maslow's hierarchy. I t i s seen as a state that i s transient for most people as they tend to move into i t and out of i t with changes i n one's l i f e . Once the lower l e v e l needs are met people can gain greater awareness of t h e i r p o t e n t i a l and f i n d ways to improve t h e i r l i v e s . In the s i t u a t i o n of group education at a Diabetes Centre, i f a firm foundation i s b u i l t i n the beginning i t i s believed the group members w i l l become more aware of t h e i r unlimited potential i n the l a t t e r meetings, thus, allowing them to become more f u l l y functioning or s e l f - a c t u a l i z e d . If a man with diabetes i s functioning well, and f e e l i n g good about himself, w i l l t h i s r e s u l t 16 i n bet ter contro l of h i s blood glucose leve l s? The answer would appear to be yes which i n turn would put less r e s p o n s i b i l i t y on the diabetes educators. Improved self-management by men with diabetes seems to t r a n s f e r into reduced costs to our health care systems. Psychosocial Issues Many researchers have observed an increased prevalence of depression among d iabet i c s (Maudsley, 1899; Menninger, 1935; Dunbar, 1943; and Koranyi , 1979; Young & Wlodarczyk, 1986). P r i o r to 1983 there had not been a c l ear systematic study of the r e l a t i o n s h i p between diabetes me l l i tus (Type I or Type II) and depression (Lustman, Amado, & Wetzel, 198 3; Wi lk inson, 1981). Geringer (1990) notes depression may occur as a psychologic response to a chronic i l l n e s s , or i n response to a complication of diabetes (e .g. b l indness , neuropathy). However, depression i n i n d i v i d u a l s with diabetes may occur because of l i f e stresses independent of diabetes , or , as with others, due to a genetic p r e d i s p o s i t i o n to depression. Treatment of depression i s e s sent ia l as improvement i n q u a l i t y of l i f e and greater compliance 17 with medical regimens have been observed (Eraker, K i r s c h t , & Becker, 1984; Wing, Epste in , & Nowalk, 1986) . Estimates of depressive symptoms for medical outpat ients vary from 12%-36% which i s s u b s t a n t i a l l y higher than the l i f e t i m e r i s k of an episode of major depress ion, 9%-26% for women and 5%-12% for men (Rodin & Voshart , 1986; American P s y c h i a t r i c A s s o c i a t i o n , 1987) . As noted above, depression i n i n d i v i d u a l s with diabetes i s often present when a major complicat ion e x i s t s . However, depression i n diabetes may be due to psycho log ica l fac tors . For example, i n d i v i d u a l s with diabetes must c a r e f u l l y regulate t h e i r most bas ic a c t i v i t i e s , ( i . e . , eating) which r e s u l t s i n loss of a sense of autonomy and contro l over t h e i r bodies. Diabetes i s not usual ly apparent to a casual observer, yet many i n d i v i d u a l s f ee l st igmatized by having a chronic disease (Geringer, 1990). This sense of being d i f f e r e n t r e s u l t s i n some ind iv idua l s with diabetes to keep high blood sugars to avoid the embarrassment of a hypoglycemic react ion (low blood sugar) i n p u b l i c . A d d i t i o n a l l y , many ind iv idua l s f ee l g u i l t y when complicat ions do appear because of a poor d i e t , present 18 or past . This t ransfers to an uncertain future that i s fraught with a n t i c i p a t i o n of v i s u a l , r e n a l , and other func t iona l losses . These issues are compounded with issues r e l a t e d to pa in , d i s a b i l i t y , heightened a t t ent ion to phys ica l wel l -be ing , and r o l e changes (Jacobson & Le ibov ich , 1984). In t r e a t i n g diabetes , i t i s important to t rea t people, and not jus t the d isease . Thus, a t tent ion should be d irec ted to the emotional aspects of the medical condi t ion , whether p h y s i o l o g i c a l l y or psycholog ica l ly based. Indiv iduals with diabetes must adhere to d i e t a r y r e s t r i c t i o n s and treatment schedules. As a r e s u l t , diabetes challenges the adaptive a b i l i t i e s of i n d i v i d u a l s and t h e i r fami l i e s . Regardless of the onset of diabetes , the development of the disease r e s u l t s i n a major l i f e c r i s i s . How t h i s c r i s i s i s dea l t with depends on factors such as approach taken by the heal th care team, inner resources of the fami ly , a v a i l a b i l i t y of other s o c i a l supports, and the a f f ec t of the s tress on the person with diabetes (Jacobson & Le ibov ich , 1984). In the i n i t i a l stages i t i s important to be aware that g r i e f may be present but i t may not be d i r e c t l y expressed. 19 Mood s h i f t s may be a t t r ibuted to changes i n blood sugar. These s h i f t s may not always be a d i r e c t r e s u l t of an a l t e r a t i o n i n blood sugar but may be due to f ee l ings of anger or depression (Jacobson & Le ibov ich , 1984) . Behaviours may be influenced by the unspoken fears of future d i s a b i l i t y , pa in , and premature death. These worries that accompany chronic i l l n e s s need to be addressed by the phys ic ian . In many cases, these worries and mood s h i f t s can be deal t with by a phys ic ian r e f e r r a l to appropriate profes s iona l s . Wilkinson (1987) states more co l labora t ion between phys ic ians , p s y c h i a t r i s t s , psychologists , and s o c i a l s c i e n t i s t s i s required to improve metabolic c o n t r o l i n d i a b e t i c care . Depression, and g u i l t , are two emotions that have been shown to be present amongst i n d i v i d u a l s with diabetes . Denial and anxiety are a lso commonly reported i n studies re la ted to psychologica l adjustment (Welch, Smith, & Walkey, 1992). Better adjustment to having diabetes has been associated with high s e l f -esteem and self-competence, and less behavioral symptoms; worse adjustment to diabetes has been associated with external locus of contro l (Delamater, 20 199 0). E a r l y adaptation to diabetes i s r e l a t e d to o v e r a l l persona l i ty development and coping patterns (Jacobson et a l . , 1986). The research h igh l ighted above lends support to the importance of e a r l y , and perhaps on-going, psychological support or in tervent ion for i n d i v i d u a l s with diabetes. Sexual i ty Most males learn from an ear ly age that manhood i s c o n d i t i o n a l , not absolute. They can lose t h e i r manhood and t h e i r i d e n t i t i e s very quick ly i f they are not w i l l i n g to f i g h t , are not able to perform i n bed, or i f they lose a job. Such incidents may lead to a man no longer b e l i e v i n g that he's a man (Z i lberge ld , 1992). Diabetes often leads to men having to leave a job because of re la ted complications. Secondly, the i n a b i l i t y to have an erect ion i s just another knock against h i s psyche. As a r e s u l t , i s the man with diabetes and re la ted complications r e a l l y a man? Z i l b e r g e l d (1992) notes that males become f i xa ted on a hard penis , and what i s done with i t , during adolescence. He sees t h i s f i x a t i o n on s i z e , hardness, and l e v e l of a c t i v i t y , remaining with a male as he 21 moves into adulthood. As a r e s u l t , men and woman begin to be l i eve that a man without a rock-hard penis during sexual a c t i v i t y "is as inappropriate as a carpenter showing up for work without h i s hammer and tape measure" ( Z i l b e r g e l d , 1992, p. 56). There aire many other myths regarding male sexual i ty that lead to a fantasy model of sex. Thus, i t i s important to examine the r e a l i t y of sex which examines the intimacy between people. I t looks at re la t ionsh ips and communication; i t does not focus on gen i ta l s . Impotence i n men with diabetes has many f i c t i o n s which can be refuted with fac tua l evidence. F i c t i o n -A l l men with diabetes w i l l become impotent and those who have Type I are more l i k e l y to experience t h i s complicat ion (Guirguis , 1992). He notes that every man w i l l become impotent i f he l i v e s long enough but that no study of men with diabetes reports the prevalence to be higher than 59%. However, diabetes acce lerates t h i s process leading to a 2-5 times increase i n that r i s k (Guirguis , 1992). A 5-year follow-up study of 466 pat ients with diabetes found that age, the degree of blood glucose c o n t r o l , excessive a lcohol consumption, and the appearance of r e t i n a l or neuropathic symptoms 22 were the only p r e d i c t i v e factors for impotence (McCulloch et a l . , 1984). In summary, there i s no support of the view that impotence i s more common i n Type I diabetes than Type I I . Another f a l l a c y re la te s to the notion that couples should learn to l i v e with impotence because i t i s a part of diabetes that i s i r r e v e r s i b l e and untreatable (Guirguis , 1992). The fact of the matter i s impotence as a r e s u l t of diabetes i s very t rea tab le . Gregoire (1992) describes the fol lowing treatments: intracavernous i n j e c t i o n of vaso-act ive drugs (papaverine, phentolamine or prostaglandin E l ) ; t o p i c a l drugs; o r a l drugs; suct ion or vacuum devices; pen i l e implants; and vascular surgery. Sex therapy alone i f no p h y s i o l o g i c a l cause i s found may correct the compl icat ion , or i t can be highly e f f ec t ive i f combined with one of the treatments l i s t e d above. In the United States, Whitehead (1988) noted that approximately 70 percent, or 1.4 m i l l i o n of the estimated 2 m i l l i o n impotent men because of diabetes are bothered by t h e i r dysfunction but 50 percent of t h i s group do not seek profess ional he lp . A d d i t i o n a l support for counse l l ing i s shown by f indings of C u l l 23 and Hardy (Etherington 1990) who note that e i g h t y - f i v e percent of the problems ind iv idua l s with p h y s i c a l d i s a b i l i t i e s experience i s due to emotional react ions to t h e i r d i s a b i l i t y . Furthermore, the r e s t o r a t i o n of emotional health i s as important as the r e s t o r a t i o n of a s a t i s f a c t o r y l e v e l of phys ica l funct ioning , and the two are viewed as being interdependent (Etherington 1990). This supports the adage of, "a sound mind and a sound body" which has existed since the days of P l a t o , Socrates , and Hippocrates. Today, nearly twenty-f ive hundred years l a t e r , there appears to be l i m i t e d in tervent ion i n r e l a t i o n to the emotional aspect of t h i s dualism. Empir i ca l studies have shown that i n general medical p r a c t i c e the sexual concerns of pat ients are genera l ly underestimated and not rout ine ly addressed (Metz and S e i f e r t , 1990). Smith (1982) points out that many heal th care-g ivers do not explore sexual concerns with t h e i r pat ients because of poor outcomes i n the past or personal value c o n f l i c t s . He goes on to say that no heal th profess ional i s so l e ly responsible for dea l ing with sexual concerns. Issues re la ted to human sexual i ty are h igh ly 24 charged which often re su l t s i n these personal concerns being overlooked i n r e h a b i l i t a t i o n . However, sexual counse l l ing i s very important i n the l i v e s of people with d i s a b i l i t i e s (Seligman, 1977). Some of the concerns r a i s e d by those with a phys i ca l d i s a b i l i t y are the fo l lowing: fear of not being able to s a t i s f y one's partner; fear of being unappealing sexual ly; fear of not being able to conceive c h i l d r e n ; and wondering whether one can funct ion sexual ly (Seligman, 1977). D iabet i c men who are impotent are concerned about t h e i r body and self- image, t h e i r sexual partner and sexual l i f e , and t h e i r interpersonal and mar i ta l r e l a t i o n s h i p (Whitehead, 1988). Common remarks made by these men to heal th profess ionals include: "I'm not a man anymore," "Why s t a r t something I can' t f i n i s h , " and "Why bother?" (Krauss, Lantinga, and K e l l y , 1990). I t i s important to point out that some d iabe t i c men f i n d the loss of e r e c t i l e capacity more threatening than loss of a limb or bl indness (Manley, 1986). Hildebrandt (1993) s tates , "It's a b ig misconception that jus t because someone has a d i s a b i l i t y the he's not in teres ted i n sex" (p. 86). I t i s e s sent ia l that profess ionals prov id ing care 25 or serv ice to men with diabetes are s ens i t ive when expla in ing what might be expected. Raymond (1992), a male author with diabetes, explains how the doctors ' care l e s s , unexplained words would haunt him for years , " . . . y o u had better hurry up and have c h i l d r e n . Impotence i s a serious problem with those who have diabetes" (p. 94). In conversation the doctor found the pat ient had been d iabe t i c for eighteen years and was jus t married. Eight years fol lowing t h i s i n s e n s i t i v e comment the couple had twin sons and he has had only two very temporary experiences with impotence over h i s 36 years with diabetes (Raymond, 1992). This gives support to the importance of g iv ing the facts to the pat ient but ensuring i t i s de l ivered i n a c a r i n g , compassionate manner. Self-image Personal worth i s important i n determining how the person with a d i s a b i l i t y views himself or h e r s e l f . Geis (1972) comments that those i n d i v i d u a l s who view themselves i n terms of a self-image that i s impossible w i l l not f e e l worthwhile. An example i s a teenage boy with a congenital limp who idea l i ze s the p h y s i c a l 26 status of h i s peers. To help increase one's se l f -worth i t i s e s s e n t i a l to a s s i s t that person to move away from an a l l - o r - n o t h i n g way of th ink ing . Moving from a s e l f -defeat ing frame of reference to a s e l f - b e n e f i t i n g one w i l l promote a change i n the person's s e l f - d e f i n i t i o n (Geis, 1972). An examination of personal worth i s v i t a l when working with ind iv idua l s with d i s a b i l i t i e s . Personal worth may be diminished by the man with diabetes who becomes impotent. I f t h i s condi t ion e x i s t s , how might the r e h a b i l i t a t i o n or medical team deal with t h i s complication? Some react ions noted inc lude: 1. I w i l l leave the d iscuss ion of sex to the s p e c i a l i s t s because I do not know enough about i t myself. 2. My primary r e s p o n s i b i l i t y i s to help people achieve a better state of hea l th , and sex i s separate from heal th . 3. I f I introduce the d iscuss ion of s e x u a l i t y , i t may become unmanageable. (Cole, 1975, p.231) Although these comments may appear to be dated i t i s 27 bel ieved by the researcher that these concerns s t i l l e x i s t today. Our society i s s t i l l qui te c losed and shy i n d i scuss ing issues re la ted to sexua l i ty . Summary The review of l i t e r a t u r e seems to ind ica te that men with diabetes are faced with struggles d a i l y . Some men learn ways to cope with t h e i r diabetes through acceptance, taking r e s p o n s i b i l i t y for t h e i r care , working c l o s e l y with the medical profess ion , and refocuss ing t h e i r l i v e s . Some researchers have attempted to quantify the prevalence of various d i a b e t i c complicat ions, discuss treatments, and explore the e f fec t of diabetes on the pat ient , but no attempt appears to have been made to focus on the experience from the perspect ive of those who have l i v e d i t . This present study w i l l hopeful ly give a greater understanding of t h i s experience. As a r e s u l t , i t i s des ired that care for men with diabetes w i l l be enhanced and re f ined . The next chapter w i l l focus on the s c i e n t i f i c process or methodology that w i l l be used to bet ter understand t h i s phenomena. Chapter 3 28 METHOD The method most appropriate for inves t i ga t ing the psychosocia l experience i s the e x i s t e n t i a l -phenomological approach. As the l a b e l impl ies , t h i s method i s a combination of the d i s c i p l i n e s of e x i s t e n t i a l i s m and phenomenology (Val le & King , 1978). Respect ive ly , they note ex i s t en t ia l i sm, "seeks to understand the human condit ion as i t manifests i t s e l f i n our concrete, l i v e d s i tuat ions" (p. 6). I t inves t igates beyond the observable, phys i ca l aspects . Husserl (1970) i s quoted i n V a l l e and King , "phenomenology i s a method which allows us to contact phenomena as we ac tua l ly l i v e them out and experience them" (p. 7) . From these descr ip t ions , the exis tent ia l -phenomological method explores the i n t e r r e l a t i o n s h i p of the i n d i v i d u a l and h i s or her world. I t implies that "people and the world are always i n a dialogue with each other" (p. 8) . G i o r g i (1970), a phenomenologist, sees t r a d i t i o n a l psychology as f a i l i n g to invest igate phenomena i n a 29 meaningful way. The t r a d i t i o n a l psychologist i s seen as only knowing the quant i ta t ive r e l a t i o n s h i p between two unknowns. Thus, the q u a l i t a t i v e method u t i l i z e d i n t h i s study, re l inquishes contro l des ired by the t r a d i t i o n a l psychologis t , and focuses on the perspect ive of men l i v i n g with diabetes . C o l a i z z i (1978) declares "that human experience i s an e s s e n t i a l and indispensable const i tuent of human psycho log ica l phenomena" (p. 57). The phenomenon as people experience i t can now be examined. An unstructured interview i s undertaken to better understand the underlying meaning of an experience rather than focusing only on observable f a c t s . Thus, the subject ' s descr ip t ion gives r e a l i t y to the phenomenon. The present study seeks to give meaning to the thoughts, emotions, and behaviours experienced by men with diabetes . Descr ipt ive accounts of l i f e for these men w i l l be obtained through unstructured interviews . This w i l l allow for the p a r t i c i p a n t s to share aspects of t h e i r l i f e that they consider as being important to bet ter understanding diabetes. The unstructured interview allows important issues to be revealed by the 30 p a r t i c i p a n t s and not by the researcher. Thus, meaning of the experience of the p a r t i c i p a n t s i s acquired. P a r t i c i p a n t s The recruitment of p a r t i c i p a n t s followed an o r i g i n a l study that was designed to evaluate a s tructured group intervent ion for men with diabetes . However, because of a lack of p a r t i c i p a t i o n the method and approach of the study were changed. P a r t i c i p a n t s for t h i s study were selected through advertisements at h o s p i t a l s and through r e f e r r a l s from medical personnel and personal contacts . A l l p a r t i c i p a n t s were given a thorough explanation of the study, which included i t s purpose and methodology. The p a r t i c i p a n t s who met the c r i t e r i a below were selected for the study. Five p a r t i c i p a n t s were involved i n t h i s study. They each took part i n two interviews. In the f i r s t interview, they described t h e i r experience l i v i n g with diabetes through an unstructured interview format. The data obtained i n the f i r s t interview was t ranscr ibed and analyzed. The re su l t s of t h i s analys i s were presented to the p a r t i c i p a n t s i n a second interview i n which they were asked to v e r i f y the r e s u l t s and suggest changes, as a v a l i d i t y check. The p a r t i c i p a n t s were selected on the bas is of the fo l lowing c r i t e r i a : 1. Male. 2. Age 25 or over. 3. Type I or Type II diabetes . 4. Diabetes for at least 5 years . 5. Under the care of an endocr ino log is t . 6. Dealing with psychosocial adjustment to diabetes . Demographic Information Demographic information included i n t h i s sec t ion was obtained at the s t a r t of the f i r s t interview. Thus, p a r t i c i p a n t s were not selected or deleted based on demographic information. As has been stated throughout t h i s paper, a l l p a r t i c i p a n t s were men with diabetes . The ir ages at the time of the interview were: 29, 38, 43, 53, and 71. The mar i ta l status of the p a r t i c i p a n t s at the time of the study was: s ing l e (2), married (2), and widowed (1). The number of years that the p a r t i c i p a n t s had been l i v i n g and coping with diabetes ranged from 6 years (1988) to 19 years (1975). Two pa r t i c i p a n t s had Type I diabetes, with the remaining three participants having Type II diabetes Table 1 which follows gives a more detailed p r o f i l e the p a r t i c i p a n t s . 33 TABLE 1 Demographic Information for Each Parti c i p a n t A B C D E Age 71 43 53 38 29 M a r i t a l Status Widowed Single Married Married Single Number of Children 1 1 2 0 0 Year of Onset of Diabetes 1982 1988 1983 1975 1982 Type of Diabetes II II II I I Current Occupation Retired Apartment Manager Medical D i s a b i l i t y Benefits Long-term D i s a b i l i t y Recycler Former Occupation Camera Sales Counsellor (Alcohol; Drug; Family) Taxation Accountant Building Manager Dishwasher Level of Education Un i v e r s i t y (2 years) Various College Courses C e r t i f i e d General Accountant College C e r t i f i -cates (2) College (2 years) 34 Phenomoloqical Interview The p a r t i c i p a n t s were interviewed once. The length of the interview ranged from one to two hours. Before the s t a r t of the interview the p a r t i c i p a n t s were asked to s ign a consent form af ter having the purpose of the study explained. The interview was unstructured. The par t i c ipant s were asked to descr ibe t h e i r experience of l i v i n g with diabetes . Open-ended questions were used when necessary to c l a r i f y or expand on the p a r t i c i p a n t s ' d e s c r i p t i o n . Act ive l i s t e n i n g accompanied by c l a r i f y i n g statements helped to b u i l d rapport with the p a r t i c i p a n t s , but was not used to inf luence the d i r e c t i o n of the interview. P a r t i c i p a n t s were encouraged to t e l l t h e i r s t o r i e s i n as much d e t a i l as they wished. The interview was p r i m a r i l y unstructured but the fol lowing questions were asked i f the p a r t i c i p a n t had not discussed them i n the interview: 1. How long have you had diabetes? What has been the biggest adjustment for you? How have you coped? 2. What does diabetes mean to you? 35 3. What are the l i m i t a t i o n s or negative e f fec t s of having diabetes? 4. Some men who have diabetes are concerned about the present or future complication of impotence. I wonder i f you can t e l l me about how you f e e l / t h i n k about t h i s complication? (Refer to Appendix C for a more de ta i l ed account of the questions asked during the f i r s t and second in terv iew) . The f i r s t interview was taped and t r a n s c r i b e d . Due to issues re la ted to c o n f i d e n t i a l i t y , the t r a n s c r i p t s have not been included i n the appendix i n order for the par t i c ipant s to remain anonymous. This promise of anonymity was out l ined i n the Informed Consent that p a r t i c i p a n t s signed p r i o r to the s t a r t of the interview. The second interview allowed p a r t i c i p a n t s to review the themes that were extracted from t h e i r t r a n s c r i p t s . Par t i c ipant s were asked to v a l i d a t e those themes that pertained to them and recommend any changes. Deta i led notes were made of the second interview, as i t was not taped. 36 Analys i s and Interpretat ion The analys i s of the t r a n s c r i p t s followed the procedure out l ined by C o l a i z z i (1978). This process gives meaning to the subject 's descr ip t ions . C o l a i z z i describes seven steps i n the analys is and i n t e r p r e t a t i o n . Each of these steps were followed i n t h i s study. The f i r s t step involved reading the p a r t i c i p a n t ' s t r a n s c r i p t s or protoco l s . The purpose of t h i s step was "to acquire a f ee l ing for them" (p. 59). The next step involved extract ing phrases and sentences that revealed s i g n i f i c a n t thoughts, behaviours, and emotions of the men's experience of diabetes . This ac t ion i s simply known as extract ing s i g n i f i c a n t statements. C o l a i z z i (1978) describes the t h i r d step as formulating meanings through creat ive i n s i g h t . Here the researcher must go beyond what i s sa id to determine what was meant by the subject . However, i n moving away from the o r i g i n a l data i t i s e s sent ia l to formulate meanings which are s t i l l connected to i t . This step was performed on a l l f i ve protocols before moving onto the fo l lowing step. Step four involved the formation of c l u s t e r s of themes from these meanings. A very 37 important aspect of t h i s step was v a l i d a t i o n . V a l i d a t i o n involved r e f e r r a l back to the o r i g i n a l protoco ls to ensure nothing was erroneously omitted or inc luded. I t was e s sent ia l to make notes of d iscrepancies between c l u s t e r s , and to not h a s t i l y ignore data or themes that appeared not to f i t ( C o l a i z z i , 1978). The f i f t h step was lengthy as i t integrated the l i s t of themes into an exhaustive d e s c r i p t i o n . This d e s c r i p t i o n i s e s s e n t i a l l y a narrat ive that describes l i v i n g with diabetes as experienced by the f i v e p a r t i c i p a n t s . I t combined the s tor i e s of the men in to one. I t h igh l igh t s the commonality of t h e i r experience. The next step i s the formation of the fundamental s t ruc ture . In essence, t h i s i s a condensed s tory of the combination of a l l f ive t r a n s c r i p t s that portrays the basic nature of the experience. The f i n a l step involved v a l i d a t i o n of the r e s u l t s by the p a r t i c i p a n t s . V e r i f i c a t i o n , or conf irmation, of themes were noted. Conversely, any recommended changes or discrepancies were incorporated into the f i n a l presentat ion of the r e s u l t s . Chapter 4 38 RESULTS Formulation of Themes Analys i s of the f ive t r a n s c r i p t s resu l ted i n 29 themes. Each theme represents one aspect or concern of l i v i n g with diabetes as experienced by the men i n t h i s study. A statement by E supports the importance of t h i s study, "I think i t i s good to have these interviews with as many people as poss ib le so that you can get a consensus, or a good idea, of what r e a l l y goes on for these people. I t i s good to have a general idea of what people with diabetes are going through." Each theme i s seen as being d i s t i n c t but some may appear to overlap. For t h i s reason the i n t e r r e l a t e d themes have been grouped together under the fo l lowing categories: emotional react ions; phys i ca l concerns; issues r e l a t e d to medical personnel; coping mechanisms; s exua l i ty ; and, other concerns. 39 Themes and Exhaustive Descr ipt ion EMOTIONAL REACTIONS 1. Feel ings of inadequacy. Frus tra t ion and anger are associated with these fee l ings of inadequacy as the d e b i l i t a t i n g nature of diabetes forced each co-researcher to res tructure h i s l i f e . The p a r t i c i p a n t s expressed f e e l i n g a sense of inadequacy on severa l l e v e l s : (a) fee l ings of inadequacy re la ted to being unable to complete d a i l y a c t i v i t i e s of l i v i n g (b) f e l t t h e i r earning po tent ia l was diminished due to the d i s a b i l i t y of having diabetes (c) fee l ings of inadequacy re la ted to being unable to s a t i s f y t h e i r partner (or po tent ia l partner) sexua l ly . P a r t i c i p a n t s noted that they became f r u s t r a t e d because of the inadequacy they f e l t i n any, or a l l , of these three areas resul ted i n them having to re s t ruc ture t h e i r l i v e s . D stated "that s t a r t s to bug me a b i t , not being able to d r i v e . " This f e e l i n g of inadequacy i s magnified by him not f ee l ing comfortable 40 asking h i s wife to take him "somewhere knowingly." He hopes to dr ive again someday but "not too s t rong ly ." B noted extreme f r u s t r a t i o n and anger i n the statement, "I used to make $40,000 a year and now I am down to $18,000 because I can' t work anymore." This loss i n h i s earning po tent ia l t ransferred into changes i n h i s l i f e s t y l e and l i v i n g accommodation. C and D both noted that they were forced to leave t h e i r jobs because of medical reasons. A became "frustrated" because of h i s impotence. He commented that " i t was not f r u s t r a t i n g to the women, they d i d not care i f you used a d i l d o , your tongue, your f inger , or whatever. They l i k e d to cuddle and sleep with you." His comment i s important to note as i t i s e s s e n t i a l to look at how the i n a b i l i t y to perform a task a f fec t s the man with diabetes and not jus t others around him. 2. P a r t i c i p a n t s are angered by t h e i r i n a b i l i t y to sometimes perform "everyday" tasks. They noted t h i s was due to general fat igue and lack of energy. As a r e s u l t , f ee l ings of inadequacy and d i s t r e s s were p l e n t i f u l . Each p a r t i c i p a n t r e a l i z e d that t h e i r 41 d i a b e t e s d i d l i m i t them i n some s i t u a t i o n s , h o w e v e r , t h i s a c k n o w l e d g e m e n t d i d n o t r e s u l t i n t o t a l a c c e p t a n c e . B t a l k e d o f a "wonder d r u g t o wake me u p a t 8 a . m . a n d do my c h o r e s . " He g o e s o n t o s a y , "I g e t a n g r y a t m y s e l f b e c a u s e I am s o d y s f u n c t i o n a l a n d I know how f u n c t i o n a l I u s e d t o be . . . s o a n g r y a t m y s e l f b e c a u s e I c a n ' t make i t a l l come t o g e t h e r . " E a l s o b e c o m e s a n g r y b e c a u s e o f i n s u l i n r e a c t i o n s t h a t c a n n o t b e c o n t r o l l e d . T h e s e r e a c t i o n s " p u t h i m o u t o f c o m m i s s i o n " l e a v i n g h i m " w a n t i n g t o g a i n some f o r m o f c o n t r o l . " C commented t h a t h i s w i f e knows when h e i s " h a v i n g a b a d h a i r d a y . " T h e s e " d a y s " r e s u l t i n h i m n o t h a v i n g t h e e n e r g y a n d p a t i e n c e t o p r e p a r e d i n n e r s o h e " t a k e s h e r o u t f o r d i n n e r . " H i s w i f e knows w h a t h i s d a y was l i k e a s s o o n a s s h e w a l k s i n t h e d o o r f r o m w o r k . T h e s e s t a t e m e n t s s u p p o r t t h e n o t i o n t h a t some d a i l y t a s k s o f l i v i n g a r e f r e q u e n t l y u n m a n a g e a b l e b e c a u s e o f t h e p a r t i c i p a n t ' s d i a b e t e s . 3 . P a r t i c i p a n t s e x h i b i t e d a w i d e r a n g e o f f e e l i n g s a n d b e h a v i o u r s when t h e i r d i a b e t e s ( b l o o d s u g a r ) was o u t o f c o n t r o l . O v e r l a p p i n g f e e l i n g s , o r a c o m b i n a t i o n o f v a r i o u s e m o t i o n s , were i d e n t i f i e d . T h e same f e e l i n g s 42 w e r e n o t n e c e s s a r i l y p r e s e n t e a c h t i m e o n e f e l t o u t o f c o n t r o l , h o w e v e r , t h e r e w e r e n o t i c e a b l e c h a n g e s i n o n e ' s mood a n d b e h a v i o u r . Some o f t h e f e e l i n g s n o t e d w e r e : a n g e r , e x t r e m e d e p r e s s i o n , f r u s t r a t i o n , g u i l t , d e n i a l - "why m e ? " , i n f e r i o r i t y , a n d c o n f u s i o n o r d e c r e a s e d c o n c e n t r a t i o n . E s t a t e d h e f e l t " t r a p p e d " a s he h a s t o d o " e v e r y t h i n g w e l l - c a l c u l a t e d w i t h f o r e t h o u g h t w i t h o u t a n y s u r p r i s e s " t o e n s u r e h i s b l o o d s u g a r s a r e a t m a n a g e a b l e l e v e l s . " E x t r e m e l y d e p r e s s e d " a n d n o t a b l e t o do " v e r y much" i s how A c h a r a c t e r i z e d h i s m o o d s . F u r t h e r m o r e , he s t a t e d , "as y o u g e t o l d e r a n d a l o n e y o u r f r u s t r a t i o n l e v e l s m o u n t . " D a l s o e x p r e s s e d f r u s t r a t i o n i n t r y i n g t o m a i n t a i n a n o r m a l b l o o d s u g a r l e v e l . He " b e a t s h i m s e l f u p " when h i s l e v e l s become t o o h i g h . D ' s " c u r r e n t g o a l r i g h t now i n l i f e . . . a w h o l e week u n d e r 1 0 . " G e t t i n g o u t o f c o n t r o l f o r D "comes o u t o f t h e woodwork" w h i c h c a u s e s h i m t o g e t a n g r y . 4 . A f e l t s e n s e o f g e n e r a l a n d a s s o c i a t e d d e p r e s s i o n . P a r t i c i p a n t s r e p o r t e d f r e q u e n t l y f e e l i n g s o f b e i n g l o w o r somewhat d e s p o n d e n t a n d d e p r e s s e d w h i c h was d i f f e r e n t f r o m t h e i r l i f e p r i o r t o d i a b e t e s . I n 43 d i scuss ing the time around h i s diagnosis , A stated "my bouts of depression I couldn't associate with anything." He goes on to t a l k of h i s need to keep busy to avoid "the depression that comes along with my diabetes ." E stated he often fee l s "depressed. I sometimes think that I have too much of a negative opinion of the disease." B defined diabetes with the fo l lowing "D" words, "destroying, des t ruc t ive , and depress ing." These changes were viewed by the p a r t i c i p a n t s as a r e s u l t of t h e i r diabetes and not due to other circumstances i n t h e i r l i v e s . 5. P a r t i c i p a n t s found i t d i f f i c u l t , f r u s t r a t i n g , and constra in ing to change t h e i r l i f e s t y l e . This per ta ins e s p e c i a l l y to fee l ings of dependence on others and the need for s t ruc ture . The co-researchers noted many examples of changes made i n t h e i r l i f e s t y l e s . D noted that he i s now unable to dr ive and scuba d ive . He s tates , "now my l i f e i s so s tructured I would be a f r a i d to do something where there was l i t t l e s t r u c t u r e . " D continued by d iscuss ing h i s " frus trat ion" over the s truggle h i s wife and him had i n buying l i f e insurance. "She q u a l i f i e d e a s i l y (no medical) . . . I was turned 44 down jus t because I was d i a b e t i c . " C r e s i s t e d changes i n h i s d i e t i n i t i a l l y . He stated doing some " r e a l l y s tupid things . . . i t was l i k e I was sugar addicted . . . g a l l o n a f ter ga l lon of ice cream . . . l o t s of d r i n k i n g . " S i m i l a r sentiments were stated by E , "I f i n d i t hard to adjust to everything associated with diabetes ." He notes the "worst thing" about diabetes i s "constantly having to be aware of the time . . . not having to take the needles." D discussed times of temporary impotence caused by low blood sugar l e v e l s . He s tated, "during foreplay i f you can' t get an erect ion you go t e s t ." These statements by the par t i c ipant s ind icate they are c o n t i n u a l l y having to make l i f e s t y l e changes to adjust to l i f e with diabetes . 6. Become angry with oneself or q u i l t - r i d d e n when diabetes was not c o n t r o l l e d . When one does not take c o n t r o l , or s e l f - r e s p o n s i b i l i t y , he fee ls he has l e t down the medical personnel, others, as wel l as h imsel f . There i s a l o t of pressure to maintain c o n t r o l . E f e l t a "big sense of g u i l t " when he d id not take care of himself and keep h i s diabetes under c o n t r o l . He stated "I went and asked for help from the pro fe s s iona l 45 without f u l f i l l i n g my interpreted ob l iga t ion to them." D f e l t compelled to begin seeing doctors again when h i s present wife and him were "getting ser ious ." He s tated , "I wanted to get better contro l and look a f t er myself for her b a s i c a l l y . " His f e l t o b l i g a t i o n to her re su l t ed i n him making changes. He has s ince taken on a more proact ive a t t i tude . D stated that one can "play the doctor ing game. I t i s tough to look a f ter your diabetes for him . . . but i t i s not for him that you are doing i t , i t i s for you." These changes i n behaviour help support the notion of l i f e with diabetes as being i n f l u x . PHYSICAL CONCERNS 7. The men reported that having diabetes they tended to f e e l that t h e i r bodies were breaking down / de ter iorated more than other men t h e i r age. Fee l ings of anger and resentment were associated with t h e i r sense of the body l e t t i n g them down or not performing l i k e they had hoped. A l l f ive men indicated that t h e i r minds were so much younger than t h e i r bodies. Diabetes 46 had an enormous impact on t h e i r phys ica l hea l th . A stated "having the mind-set I have, I s t i l l th ink I am twenty." B p a r a l l e l l e d A by s t a t i n g , "my mind wants to do a m i l l i o n th ings . Mental ly , I am kind of l i k e 18 years but my body won't keep up. I am 43 years o ld and I f e e l l i k e 120." D gives phys ica l evidence of the t o l l of diabetes , he had "29 laser operations (for eyesight problems) over the past 3 years ." C s tated , "maybe p h i l o s o p h i c a l l y . . . my body i s much older that my mind r i g h t now. I have to accept that ." These statements help to d i sp lay the p a r t i c i p a n t s f e l t sense that t h e i r bodies are de ter iora t ing more qu ick ly than t h e i r peers who do not have diabetes. 8. P a r t i c i p a n t s bel ieve that various ailments take a prolonged period of time to hea l . They noted that such things as cuts and bruises took much longer to heal i n comparison to those ind iv idua l s without diabetes , and to themselves p r i o r to being diagnosed as having diabetes . This resul ted i n f r u s t r a t i o n because of the d e b i l i t a t i n g nature of diabetes, e s p e c i a l l y a f t er having diabetes for a long period of time. D ta lked of many instances whereby the hea l ing 47 process with diabetes i s retarded. "It takes a l o t longer. Not so much colds and things , but cuts and wounds. Some days i f I get a b l i s t e r on my foot i t takes two weeks to hea l , being c a r e f u l . " A discussed "transient in fec t ions . . . a f u l l year of f l u l i k e symptoms." He stated, "on more than one occasion I have had the f l u for 40 days." These ailments represent only the day-to-day concerns of the p a r t i c i p a n t s and not the major complications they may encounter ( ie . amputation, v i s u a l impairment, kidney f a i l u r e , e t c . ) . 9. Fear was engendered i n par t i c ipant s having seen the e f fec t s of diabetes on the phys ica l wel l -be ing of others or because of messages from others i n r e l a t i o n to diabetes . Par t i c ipants are forever wondering how incapaci tated they may become because of diabetes . This concern or ig inates from having p h y s i c a l l y seen the progress ion of diabetes with others, or because of the graphic , but i n s e n s i t i v e , s tor ie s relayed by others . These accounts tend to get p a r t i c i p a n t s "back on track". E stated " i t i s f r ightening to see how d i sab led you can become from diabetes ." He also ta lked 48 of diabetes being i n h i s family for generations. To stop t h i s cyc le he bel ieves i t i s important for him (and others with diabetes) to not have c h i l d r e n . A a lso ta lked of a h i s tory of diabetes wi th in h i s fami ly . His grandfather died at age 82 with "both legs amputated." "It a l l s tarted with the doctors c u t t i n g of f h i s b ig toe . . . why d id I have to have that grandfather?" 10. Blindness was i d e n t i f i e d as the greatest fear i n having diabetes . Other fears (or s ide-e f fec ts ) i n having diabetes noted were amputation of feet and legs , poor c i r c u l a t i o n to extremit ies , problems with one's heart and kidneys, and ear ly death. C was very aware of the numerous complications of diabetes and stated "I don't l e t i t bother me." His two biggest fears are problems with h i s v i s i o n and c i r c u l a t i o n . A i s "afra id" too that he may go b l i n d , e s p e c i a l l y a f t er hearing at the diabetes c l i n i c about a "young man (20 years old) who went b l i n d very q u i c k l y . " B wonders i f he w i l l lose h i s feet and legs . He stated "perhaps I am i n den ia l of how severe i t i s . " D discussed how he has dea l t with h i s v i s i o n loss and how he i s "re l ieved 49 . . . I w i l l never go black . . . I w i l l be able to see l i g h t . " His "mind gets bent out of shape" by reading the o b i t u a r i e s . "Someone 45 died of diabetes . . . that i s not too many years away." 11. P a r t i c i p a n t ' s d e f i n i t i o n s of diabetes were associated with a loss . This loss focuses on p h y s i c a l we l l -be ing and autonomy. E stated "diabetes i s sor t of l i k e a death . . . Diabetes i s a sense of constant g u i l t -r idden fear that i f I don't do what i s d i c ta ted by the doctors I w i l l suffer from t h i s , I w i l l suf fer from that . . . constantly f ee l ing g u i l t y and trapped . . . trapped i n a body that requires a r t i f i c i a l means to sus ta in l i f e . " B expressed s i m i l a r sentiments i n h i s statement, "It destroyed my l i f e . . . I f e e l so misunderstood by my fr iends . . . even my doctors know so l i t t l e about i t (notes h i s s p e c i a l i s t i s knowledgeable) . . . i t i s so devastating . . . the fat igue , the dysfunct ional l i f e s t y l e . " D commented " i t r e a l l y contro l s your l i f e - diabetes comes f i r s t i n most things to funct ion properly everyday." He a lso s tated " i t was p a i n f u l to lose my d r i v e r ' s l i cense a f t er 20 years or so." 50 ISSUES RELATED TO MEDICAL PERSONNEL 12. Want medical personnel to understand and v a l i d a t e t h e i r f ee l ings of d i s a b i l i t y and not be treated as though they are rushed. They indicated they would be able to provide more information and data about themselves and t h e i r d i s a b i l i t y i f the personnel took time to t a l k with them about themselves beyond t h e i r d i s a b i l i t y . C stated "maybe i n order for them (doctors) to survive i n t h e i r jobs they don't want to deal with i t ( f ee l ings ) . I am not saying t h e i r concern stops there but maybe t h e i r methods of communication stop there . They e i ther can't take the time or they won't take the time." B had many comments about medical personnel . He stated, "I have met many other doctors (besides h i s s p e c i a l i s t ) who jus t don't care , or they are too busy. They are very wel l educated . . . they don't take the time to explain th ings . The people who know the most (the doctors) see the most people but don't have the time to explain th ings ." In t a l k i n g about the i n i t i a l problems with h i s eyesight, D's doctor s tated, "by Christmas you w i l l be i n surgery." 51 D f e l t t h i s was "insensit ive" and wanted a more thorough explanation. Furthermore, he stated "a doctor i s l i k e a teacher i n high school , i f you are motivated by them i t w i l l s t i c k with you." E s tated, "he (general prac t i t i oner ) has some s e n s i t i v i t y to my fee l ings but he i s more b i o l o g i c a l because that i s the framework he comes from . . . i t would be nice sometimes i f he could understand how I am fee l ing . . . he has r e f e r r e d me to a s p e c i a l i s t i n the past ." 13. The p a r t i c i p a n t s want to have doctors t a l k i n lay language (where poss ib l e ) . Par t i c ipant s were f r u s t r a t e d by doctors who had d i f f i c u l t y expla in ing what was happening to them, or what to expect, without the use of medical jargon. Some doctors seemed unable to understand the lack of knowledge that pat ients may have i n r e l a t i o n to d iabe t i c complicat ions. Important to r e a l i z e that many pat ients do not have any medical background. B expressed extreme f r u s t r a t i o n i n r e l a t i o n to t h i s theme. He stated "I just wish they would t a l k to me i n Eng l i sh . . . t e l l me why I can' t get a hard-on, and t h i s i s why your feet are numb . . . jus t t a l k to me 52 l i k e a human-being. Avoid t h i s heavy-duty medical terminology ( i f pos s ib l e ) . The thing I can complain about the most . . . they don't take enough time to go into layman language." A re la ted to medical personnel by s t a t i n g "straight t a l k to me basis . . . not as a doctor to pat ient but t a l k to me as man to man. T e l l you i f you become impotent . . . i t can be corrected i n c e r t a i n ways." 14. P a r t i c i p a n t s were surprised and f rus tra ted t h e i r diagnosis was long i n process and often misdiagnosed. Before confirmation came from a doctor that each p a r t i c i p a n t had diabetes there were on-going tes t s and changes i n health with no answers. F r u s t r a t i o n and confusion was quite common for the men during t h i s time. I t was confirmed that the diagnosis of diabetes today i s much quicker . C was t o l d he had high blood sugars f i v e years before he was f i n a l l y diagnosed. He ta lked of a support group i n which he was a p a r t i c i p a n t and stated "I was not the only one who was misdiagnosed." A had a s i m i l a r experience, "overr id ing th ing was s t i l l my blood sugars, s t i l l my diabetes but unknowingly . . . doctors d id not stamp i t . . . not sure 53 i f they had the perception that when you t o l d a person they had diabetes . . . they would become t e r r o r i z e d , a f r a i d , or whatever." B stated "for three or four years" he had been t e l l i n g h i s doctor 'I am s i c k , I am s i c k ' without a diagnosis . " F i n a l l y , they found out I was s i c k - i t took a l o t of years to f i n d that out." 15. The medical profess ion does not always give pat ients a l l the information. There seemed to be some ambivalence i n r e l a t i o n to t h i s theme. I f a s i d e -e f fec t of diabetes i s explained f u l l y to an i n d i v i d u a l i t may cause t e r r o r and fear of the future for that person. However, i f information i s withheld i t i s viewed as being u n f a i r , and perhaps u n e t h i c a l . This was true e s p e c i a l l y i n deal ing with impotence. B stated " t e l l me why I can' t get a hard-on, and t h i s i s why your feet are numb . . . t a l k to me l i k e a human-being ." A ta lked of the c l i n i c he attends, "sad th ing i s sometimes they want you to be aware and not other times . . . (discussed a young man with diabetes who became bl ind) she (diabetes educator) i s t r y i n g to give you hope forget t ing that she i s also g iv ing you t e r r o r . " I t appears that i t i s d i f f i c u l t for the 54 medical profession to gauge what information should be shared or withheld from each patient or group of patients. 16. General f e e l i n g that diabetes education of both patients and care-givers i s improving. Although p a r t i c i p a n t s f e e l changes have to be made i n the delivery of services they noted that services are continually being upgraded. They wanted medical personnel to know that things are moving i n a p o s i t i v e d i r e c t i o n , not i n a negative one. E discussed and supported s c i e n t i f i c developments by the medical profession, "should s t r i v e more to f i n d ways to regenerate the pancreas so i n s u l i n can be reproduced again." D f e l t diabetes c l i n i c s i n hospitals were "working r e a l l y well." His view of a c l i n i c included a doctor, a d i e t i t i a n , a nurse, and a s o c i a l worker. In the "old days" you "only saw the doctor and that was i t . Now they look after your whole body rather than j u s t a bunch of numbers on a piece of paper." B said " i t doesn't matter how much we (people with diabetes and the medical profession) learn about diabetes, there i s so much more to learn." 55 17. Physic ians (and medical personnel) are human - they do not always know the answers. I t was deemed important to note that there i s not an expectation that doctors and nurses know everything. A d d i t i o n a l l y , i t i s understood that some issues are d i f f i c u l t to d iscuss with some pat ients . C stated "even today I don't th ink that they r e a l l y know what happened i n my body." To expla in the human side of physicians D sa id "I th ink that i s the way doctors are . . . they put a buffer up between them and a s i ck pat ient ." D helped to show that medical p r a c t i t i o n e r s are people l i k e you and I . He stated "people don't r e a l i z e that doctors are not mirac le workers and they don't have a l l t h i s magic and they don't know everything . . . none of them have a l l the answers, not even (names h i s s p e c i a l i s t ) . They are jus t ordinary people . . . so I don't put them on a pedestal . . . jus t people who have a l i t t l e more education about some medical th ings ." 18. F r u s t r a t i o n with the medical profess ion resu l t ed i n p a r t i c i p a n t s abandoning regular v i s i t s for a prolonged p e r i o d . When one becomes d i s i l l u s i o n e d with the medical profess ion a natural react ion i s to avoid t h e i r 56 s erv i ce s . However, one usual ly comes to r e a l i z e that t h e i r knowledge and care i s e s sent ia l to t h e i r p h y s i c a l we l l -be ing . D ta lked of h i s father being a doctor and having other medical profess ionals t e l l i n g h i s father the r e s u l t s of h i s t e s t s . D would get "choked" because h i s father would "come home and b a l l me out . . . so I boycotted doctors for seven years ." C was "frustrated" a lso as he f e l t he "rea l ly was not get t ing the answers." He got "fed up with the doctors . . . and d i d n ' t bother going back for a period of a l i t t l e over a year ." COPING MECHANISMS 19. Important to assert oneself (not be afra id) to ask phys ic ians questions and to inform or educate oneself whenever poss ib l e . One way to improve communication between pat ient and physic ian i s to ask quest ions. Doctors were acknowledged as not being mind-readers, thus, they are not always sure how diabetes i s c u r r e n t l y a f f ec t ing one's l i f e . C i s "more confident" i n asking questions because of a support group he attended. He stated, " i t i s only recent ly that I w i l l 57 a s k t h e r e a l d e t a i l e d q u e s t i o n s . . . I t h i n k I g o t t h a t a t t i t u d e f r o m t h e g r o u p . . . I am n o t i n t i m i d a t e d now . . . I am n o t s h y t o a s k t h e q u e s t i o n s . " E a c h p a r t i c i p a n t n o t e d t h a t i t i s i m p o r t a n t f o r h i m t o t r y -t o r e a d a r t i c l e s a b o u t new t r e a t m e n t s w h e n e v e r p o s s i b l e . T h i s h e l p s t o a d d t o t h a t i n f o r m a t i o n d i s s e m i n a t e d by t h e m e d i c a l p r o f e s s i o n . 2 0 . F e l t n e e d t o t a l k t o o t h e r s a b o u t c o n c e r n s . T h e c o r e s e a r c h e r s f e l t a s t r o n g n e e d t o t a l k t o o t h e r s ( s o c i a l w o r k e r s , c o u n s e l l o r s , d o c t o r s , n u r s e s , p a r t n e r s , o t h e r d i a b e t i c s ) a b o u t t h e i r c o n c e r n s , f e a r s , f e e l i n g s r e l a t e d t o h a v i n g d i a b e t e s . T h e y a l s o w a n t e d t o t a l k a b o u t t h e i r w o r r i e s r e g a r d i n g t h e f u t u r e . B n o t e d h e c o p e s b y t a l k i n g t o h i s d o c t o r a n d s e e s c o u n s e l l o r s a n d s u p p o r t g r o u p s a s b e i n g a n i n t e g r a l p a r t t o o n e ' s c a r e . He s t a t e d "when I h a v e a n y p r o b l e m s , I t e l l my d o c t o r . . . I n e e d p e o p l e l i k e y o u (a c o u n s e l l o r ) t o u n d e r s t a n d t h a t i s how I f e e l . . . g r e a t t o t a l k t o o t h e r s who a r e e x p e r i e n c i n g t h e same t h i n g a s y o u . " E s u p p o r t e d B i n n o t i n g t h a t " c o m m u n i c a t i o n w i t h o t h e r p e o p l e who h a v e t h e same c o n d i t i o n " i s e s s e n t i a l . "Open c o m m u n i c a t i o n a n d 58 cooperation" between himself and the medical profess ion i s a l so important. A stated "just s i t t i n g t a l k i n g to you i s better for me than what I would normally be doing . . . l ay ing down and watching the b a l l game." C ta lked of a support group, he stated "sharing of experiences was most important . . . I was not the only one who d i d not have a l l the answers." D stated " i t was a matter of t a l k i n g to someone else (a s o c i a l worker) . . . a i r i n g i t out . . . jus t being able to t a l k to other d iabe t i c s about t h e i r d a i l y l i f e (support group)." 21. Coping - i t i s important to f ind something you enioy to pass the time. Par t i c ipants noted i t was important to develop d i f f eren t coping mechanisms to deal with diabetes . The reason for t h i s was to prevent one from g iv ing up, thus, providing hope for the future . Some mechanisms noted were having a p o s i t i v e a t t i t u d e , e l iminat ing v ices (smoking, dr ink ing a l c o h o l ) , keeping the focus of f one's diabetes i n everyday l i v i n g , and becoming involved i n hobbies and a c t i v i t i e s that bring enjoyment. E , and the other coresearchers, ta lked of the 59 importance of a p o s i t i v e a t t i tude and ensuring that diabetes i s not the focus i n d a i l y l i f e . He s tated "I don't th ink about i t . . . think about i t only when i t i s time for some type of treatment." Both C and D commented that they l i k e to be "lef t alone" which i s something t h e i r spouses have learned to respect . A i s an av id photographer who uses t h i s a c t i v i t y to take h i s "mind of f th ings ." To occupy h is time C c o l l e c t s rocks and minerals which he observes under the microscope and c l a s s i f i e s using h is computer. B noted he copes by sometimes "staying i n bed and r e l a x i n g . " 22. A support group was stressed as being very important i n deal ing with diabetes. The p a r t i c i p a n t s noted various forms the group could take with a balance between s tructured and unstructured a c t i v i t i e s as being e s s e n t i a l . The unstructured component would allow d i scuss ion with people experiencing the same t h i n g . The s tructured component might involve guest speakers or the teaching of a new s k i l l by a group member or the f a c i l i t a t o r . D "wished" he had a support group, s i m i l a r to the one he now attends, when he was "younger." He stated 60 "I am sure I would not be i n t h i s state now" i f one had been ava i l a b l e . He recommended that having both men and women i n the group i s important but "perhaps have them s p l i t up for one-half of the meeting." B stated he would "love i t " i f guest speakers attended providing "talk-time" was provided for the p a r t i c i p a n t s . This sense of a s p l i t between structured and unstructured a c t i v i t i e s was expressed by a l l the coresearchers. A noted i t was es s e n t i a l for "stories to be shared." 23. Important to take s e l f - r e s p o n s i b i l i t y i n ones 1 care. In other words, by being self-responsible there i s less demand put on the doctors and nurses. I t i s less s t r e s s f u l for everyone i f the patient i s able to do as much as possible for himself. A commented on the s t a b i l i z a t i o n of his blood sugars as he i s eating "healthier" and he i s now testing his blood sugar l e v e l s "about four times a week ... versus before, once every three months i n the lab." E stated "one good thing about diabetes ... I have learned a l o t about n u t r i t i o n and I am eating healthier." He r e a l i z e s a well-balanced d i e t i s essential to delay complications of diabetes. D now tests "four to f i v e times a day (with a glucometer) 1 1 whereby i n the past "I was t e s t i n g a couple of times per week which was not nearly enough." He ta lked of how diabetes education has changed i n that today "doctors want pat ients to take c o n t r o l , they w i l l help you along the road. They r e a l l y want you to look a f ter yourse l f ." These statements indicate the importance of a symbiotic and interdependent re la t i onsh ip between the pat ient and the medical profess ion . 24. P a r t i c i p a n t s l i k e d to be l e f t alone when having a bad day. P a r t i c i p a n t s usual ly know they are having a bad day as soon as they awake. I t was important to make others around you aware of t h i s need. Avoidance of others l ed to decreased c o n f l i c t . C s tated , "I want her (my wife) to avoid me . . . I know what I w i l l be l i k e . . . we get argumentative and I s t a r t b i t i n g at her ." D agreed with C, he noted i t i s important to deal with your "feelings" but i t i s "sometimes best to be l e f t alone . . . i t i s tough on my wife ." 62 SEXUALITY 25. In the area of phys ica l intimacy i t was important to communicate with your partner, your needs and t h e i r needs, because of po ten t ia l problems of impotence r e l a t e d to the diabetes, beyond conventional in tercourse . A b i l i t y to have an erect ion and orgasm are important. Par t i c ipants noted that t a l k i n g to your partner w i l l help c l a r i f y what i s important to both of you. A d d i t i o n a l l y , i t w i l l allow the two of you to explore a l t e r n a t i v e ways of being int imate, and help res tore the spontaneity, as much as poss ib le , back in to the r e l a t i o n s h i p . E , who has not experienced impotence, commented that i f he d id " i t would probably a f fec t my partner so i t would be important to d iscuss ." C stated "when mates are impotent you have to discuss i t . " He i s present ly impotent but t h i s condit ion "is not put t ing any pressure on us or our r e l a t i o n s h i p . . . i f our f ee l ings change . . . we would have to look at some poss ib le switches or so lut ions . . . there are other things other than the act of intercourse that are s a t i s f y i n g . " A very s i g n i f i c a n t statement by C was 63 "there can s t i l l be intimacy with impotence." A stated "don't be a f r a i d that you are (impotent), remember that your mate i s probably more understanding than you expect." D ta lked of how he has to account for the number of c a l o r i e s he w i l l burn while having sex and how one has to adapt. He w i l l often have some "peanut butter" before going to bed and h i s wife "knows a f t er we make love that I am off to the fr idge again ." These statements seem to indicate that intimacy i s s t i l l poss ib le with diabetes and impotence but for t h i s to happen the consenting partners have to t a l k openly and be crea t ive i n t h e i r lovemaking. 26. P a r t i c i p a n t s demanded that medical personnel be more open and honest i n t a l k i n g about impotence and s e x u a l i t y . They were frus trated and angry that these i n d i v i d u a l s tended not to be e x p l i c i t i n regards to these i ssues . I t was deemed as being important for both male and female p r a c t i t i o n e r s to become more comfortable i n such discuss ions . B ta lked of h i s impotence and stated "no one has ever been e x p l i c i t to me as to whether t h i s i s a r e s u l t of my diabetes ." He only found out impotence was a ^ 64 complicat ion from a group he attended. He went on to say "you have to understand that doctors are people too and they are embarrassed. I t i s eas ier to t a l k about my food rather than my penis . I would have to be the one to i n i t i a t e the conversat ion." The avoidance of dea l ing openly with issues of sexual i ty was mirrored by D, "doctors and nurses when checking you . . . ask i f you have been having problems . . . 'No! 1 . . . and they move on." He commented on the locat ion of the Sexual Dysfunction C l i n i c at a l o c a l h o s p i t a l , " i t i s downstairs and around the corner." A wants doctors to discuss treatments for impotence, " t e l l me why I can ' t get i t up." He wants a "straight exchange . . . open and honest." A quoted an Indian ( F i r s t Nations) saying, 'You walk a mile i n my moccasins' to f ind out what I am l i k e , and followed with the statement, "sometimes the doctors don't want to walk a mile i n your moccasins." OTHER CONCERNS 27. L i f e dreams / career options are l i m i t e d or blocked i n having diabetes. Diabetes resu l ted i n these experiences for the p a r t i c i p a n t s : ear ly ret irement , 65 long-term d i s a b i l i t y , decreased income/earning p o t e n t i a l , unable to l i v e i n remote areas due to need for medical care. These examples ind icate that one's l i f e s t y l e and future goals are a l tered because of d iabetes . E ta lked of a former l i f e s t y l e whereby he would t r a v e l from "town-to-town" making enough money to move on. His l i f e dream was to t r a v e l through North and South America as he speaks both "French and Spanish." He sa id "now I can' t do that . . . I can ' t fol low a d i e t and a r i g i d s tructure i n an unstructured environment." Another l i f e dream of E , s ince he was a c h i l d , was to " l ive i n the woods i n the North . . . f i s h , b u i l d a house, trap animals, l i v e of f the land. I know now i t would not be poss ib le ." B's health concerns forced him to take ear ly retirement, and D's r e l a t e d complications resu l ted i n him rece iv ing long-term d i s a b i l i t y benef i t s . 28. Feel that there i s a lack of knowledge about diabetes by the general publ ic which tends to contr ibute to a f ee l ing of not being understood. This lack of knowledge about diabetes was sometimes present amongst those ind iv idua l s c lose to the p a r t i c i p a n t s . I t was noted that i t becomes tiresome to c o n t i n u a l l y have to re lay information to others to d i s p e l myths they be l i eve . D commented " l ike most people, I ju s t looked a f ter my nephew (middle adolescence) for a week, he has no concept of what diabetes i s . " His wife and him sensed t h e i r nephew s t i l l i s unsure of the seriousness of diabetes. D also re la ted a comment made to a f r i e n d (she has had diabetes for 17 years) by her mother, " i t i s okay dear, I have a f r i end who i s d i a b e t i c and she i s just b l i n d . " This lack of knowledge and s e n s i t i v i t y has "stuck" with her for a long time. Most people, inc lud ing many fr i ends of B, "do not understand" the "energy" i t takes for him to "get up and spin h i s butt jus t to be okay to see them." In general , the p a r t i c i p a n t s expressed a des i re of not having to explain the impact of t h e i r d i s a b i l i t y to everyone around them. 29. Diabetes forces one to be well-planned (decreases one's a b i l i t y to be spontaneous). This r e s u l t s i n one having to be more s tructured. Spontaneity i s e s s e n t i a l l y impossible because they always have to be th ink ing ahead. Having to be well-planned was 67 supported by a l l p a r t i c i p a n t s , however, the sense of s tructure appeared to be more e s sent ia l to the p a r t i c i p a n t s with Type I diabetes. D stated "I always have my glucometer with me. We go p a r t - a n d - p a r c e l . " Furthermore, D noted "your l i f e revolves around times and s tructure of exercise and food." A statement by E was very prophet ic , "I can be spontaneous as long as i t i s wel l -planned and thought out." He discussed h i s l i f e s t y l e p r i o r to being diagnosed with diabetes as being very unstructured with a des ire for t r a v e l to many remote areas throughout the world. In response to him being "forced" to change h is l i f e s t y l e he stated "when you are d iabe t i c i t does not matter what type of character you are you have to be t h i s s tructured ( in r e l a t i o n to eat ing, t e s t ing blood sugars, and taking in su l in ) . . . biggest l i m i t a t i o n . . . l i m i t e d i n what I can do." Essent ia l Structure Each of the par t i c ipant s described h i s experience of l i v i n g with diabetes as being a constant s trugg le . They have the ongoing bat t l e of t r y i n g to maintain a 68 des ired blood sugar l e v e l as determined by t h e i r heal th care team. To achieve t h i s the p a r t i c i p a n t s noted that c o n t i n u a l l y they have to be th inking ahead. In other words, t h e i r d a i l y l i f e i s fraught with s t r u c t u r e . The p a r t i c i p a n t s discussed the range of emotions that they have experienced i n l i v i n g with diabetes . F r u s t r a t i o n and anger are common with t h i s group of men as they watch t h e i r wel l -being deter iorate because of t h e i r diabetes . I t i s important that men with diabetes see changes i n t h e i r health as being a r e s u l t of t h e i r diabetes and not due to a personal weakness. However, they noted that i t i s e s sent ia l that a person with diabetes i s responsible i n t h e i r care . Thus, d i sregarding advice from medical personnel may lead to a quicker onset and a magnif ication of some complicat ions . The onset of complications requires a r e s t r u c t u r i n g which i s a gradual process i n most instances . General ly , the p a r t i c i p a n t s were not required to change everything overnight. However, a l t e r a t i o n s i n l i f e s t y l e were not always e a s i l y accepted. There appeared to be a r e a l i z a t i o n that i n some cases they could never return to where they once 69 were. In other words, some l i f e s t y l e changes were permanent. Working c lo se ly with a team of diabetes educators helped them make the t r a n s i t i o n s more smoothly. In r e l a t i o n to self-management of diabetes the p a r t i c i p a n t s f e l t very strongly that the maintenance of t i g h t contro l must be done for yourse l f and not for f r i e n d s , f a m i l i e s , or doctors . Ownership of one's care i s important for acceptance of the d i s a b i l i t y . A d d i t i o n a l l y , a more f u l f i l l i n g and s a t i s f y i n g l i f e i s poss ib le when t h i s r e s p o n s i b i l i t y i s taken. The p a r t i c i p a n t s viewed diabetes as a f f e c t i n g both t h e i r phys i ca l and psychological we l l -be ing . In other words, diabetes was associated with a l o s s . Deter iorat ions i n phys ica l wel l -being was sometimes very gradual and i n other instances i t was very sudden. Changes i n eyesight tended to be qui te gradual but very d i s t r e s s i n g . Bl indness , whether gradual or sudden, was the greatest fear of the group studied. A dec l ine i n heal th often resu l ted i n a loss of autonomy or independence forc ing the men to become more dependent on others . A support network was i d e n t i f i e d as being e s s e n t i a l . 70 A support network was most important i n dea l ing with emotional react ions to the d i s a b i l i t y . This network could cons is t of f r i ends , family / spouse, a support group (other people with d iabetes ) , a counse l lor , and the medical team. An opportunity to t a l k to others regarding t h e i r concerns, f e e l i n g s , and fears was an out le t necessary for t h e i r emotional w e l l -being. Discuss ing d a i l y concerns with other i n d i v i d u a l s who have diabetes allowed for the normal izat ion of t h e i r experience. Thus, one does not f e e l so alone i n coping with h i s s i t u a t i o n . The p a r t i c i p a n t s are ambivalent about t h e i r r e l a t i o n s h i p with t h e i r doctors p r i m a r i l y , and the medical profess ion secondari ly . Physic ians play a very important r o l e i n t h e i r wel l -be ing , however, some do not take the time to explain the pat i ent s ' current s i t u a t i o n i n a language that i s understood by both p a r t i e s . There i s a des ire for the doctor -pat ient r e l a t i o n s h i p to become c lo ser . I f t h i s was to occur there was a f e l t sense that topics such as impotence could be deal t with a more open and honest manner. Doctors, and other medical profess ionals , are genera l ly h igh ly respected and acknowledged to be human. In 71 r e l a t i o n to t h e i r humanness they are not expected to know a l l the answers, however, the p a r t i c i p a n t s would hope that time would be taken to f i n d a s o l u t i o n or response. In general , there i s a p o s i t i v e f e e l i n g towards diabetes care and the c l i n i c s wi th in many h o s p i t a l s . Continuing education of the general p u b l i c and medical profess iona l s , e spec ia l ly those who are not working d i r e c t l y with a pat ient base of people with diabetes , i s viewed as being fundamental. These men are angered by those doctors (general p r a c t i t i o n e r s ) who do not have the basic knowledge about diabetes because they f e e l diabetes may go undetected for a longer than necessary period of time. One of t h e i r major concerns re la tes to the discomfort of the medical profess ion to discuss concerns of sexual i ty and impotence. I t i s f e l t that not a l l medical p r a c t i t i o n e r s are embarrassed or uncomfortable with such issues but they are bel ieved to outnumber those who address them openly. Despite diabetes being a very s t r e s s f u l c o n d i t i o n that can lead to other complications and u l t imate ly a premature death the p a r t i c i p a n t s note i t forces each 72 and every one of them to adjust h i s l i f e s t y l e . However, they have a l l continued to have as "normal" a l i f e as pos s ib l e . The d i s a b i l i t y may sometimes l i m i t them i n some a c t i v i t i e s but i t a lso allows them to be crea t ive and explore other options. The medical profess ion i s sometimes viewed as not doing enough i n the serv ice they provide, however, each p a r t i c i p a n t r e a l i z e d that they i t i s e s sent ia l for h i s we l l -be ing . There i s a des i re to be more c l e a r l y understood and to be provided with up-to-date care. Summary In t h i s chapter, 29 themes, across 6 categor ies , represent ing the experience of men l i v i n g with diabetes were presented. These themes were then supported by coresearcher comments i n the exhaustive d e s c r i p t i o n followed by the essence or core of the experience, the e s s e n t i a l s t ruc ture . In the next chapter, these f ind ings w i l l be discussed and impl icat ions for counse l l ing , the medical profess ion, and research w i l l be explored. 73 Chapter 5 DISCUSSION In t h i s chapter, the r e s u l t s of the study w i l l be discussed i n terms of ex i s t ing re levant l i t e r a t u r e and impl i ca t ions for various profess ional p r a c t i t i o n e r s . L imi ta t ions of the study and recommendations for further research w i l l be noted. Impl icat ions of Findings to Related L i t e r a t u r e The research study has attempted to understand the experience and psychological react ions of men with diabetes . The understanding of t h i s phenomena i s viewed from the exper i en t ia l perspect ive of the p a r t i c i p a n t s . The r e s u l t s provide support for previous s tudies (Etherington, 1990; Smith, 1982) that suggest psycho log ica l intervent ion i n medical se t t ings to a s s i s t i n adjustment to d i s a b i l i t y are l i m i t e d . Day-to-day l i f e with diabetes requires people to dea l with d i f f i c u l t i e s that are not common to most i n d i v i d u a l s around them. The p a r t i c i p a n t s i d e n t i f i e d f e e l i n g 74 inadequate, f r u s t r a t e d , and angry when t h e i r diabetes was out of c o n t r o l . They expressed a need to t a l k with others to vent t h e i r f r u s t r a t i o n . I t was not c r u c i a l that t h i s person was a d iabe t i c or a s o c i a l worker but rather someone who would take the time and l i s t e n without rushing . A l l f i v e men acknowledged that doctors may not have the time to t a l k i n length but i t i s appreciated i f they do make an e f f o r t to l i s t e n to t h e i r concerns. The notion of "us and them" i s created when pat ients do not f e e l understood and acknowledged. E a r l y intervent ion i s c r i t i c a l . Services to i n d i v i d u a l s who are adapting to a d i s a b i l i t y or medical condi t ion should be proact ive i n nature versus r e a c t i v e . For example, i t i s hoped that medical p r a c t i t i o n e r s w i l l provide men with diabetes with information about impotence before i t becomes a r e a l i t y for many of them. This s traightforward approach w i l l hopefu l ly r e s u l t i n health profess ionals becoming jus t as comfortable asking men with diabetes about t h e i r sexual concerns as they are regarding d i e tary concerns. P a r t i c i p a n t s stated i t was important to take personal r e s p o n s i b i l i t y i n t h e i r care. They noted being happier with themselves, and f e e l i n g be t ter , when 75 blood sugars were maintained at a low l e v e l . Taking c o n t r o l and being responsible t rans fers into bet ter hea l th and increased esteem, thus, the fourth l e v e l of Maslow's hierarchy begins to be s a t i s f i e d . R o l l i n s (1992) supports t h i s notion of the enhancement of s e l f -esteem through improved hea l th . This movement towards i n t r i n s i c motivat ion, and away from e x t r i n s i c mot ivat ion, for goal attainment indicates the man i s moving away from the need to prove himself . This r e l a t e s to F a r r e l l ' s (1986) d iscuss ion of the s o c i a l i z a t i o n of most men to des ire success and to "prove themselves". In the long-term i t i s e s s e n t i a l for men with diabetes to res tructure t h e i r l i v e s and f i n d other a c t i v i t i e s to b u i l d and maintain a healthy l e v e l of self-esteem. The p a r t i c i p a n t s i n t h i s study expressed a need to d iscuss t h e i r concerns i n greater d e t a i l than what i s afforded by many doctors . A d d i t i o n a l l y , they mentioned the importance of invo lv ing profess ionals to deal with the emotional, or psychosocia l , adjustment to d iabetes . The need to i d e n t i f y intervent ion points where counse l l ing and education are most l i k e l y to help pat ients i n car ing for t h e i r disease i s e s s e n t i a l 76 (Davis et a l . , 1987). Thus, psycholog ica l in tervent ion i s necessary for many men with diabetes . However, i t i s important to mention that the amount of counse l l ing w i l l vary amongst i n d i v i d u a l s and that i t i s not e s s e n t i a l for a l l men with diabetes . Impotence, or the p o s s i b i l i t y of i t , i s very d i s t r e s s i n g to most men. The men i n t h i s study re in forced t h i s not ion . As Z i l b e r g e l d (1992) notes, one can lose h i s manhood and i d e n t i t y very q u i c k l y as they are c o n d i t i o n a l . Impotence has the power of making a man bel ieve he i s no longer a man. The p a r t i c i p a n t s confirmed that i n order to deal with impotence p o s i t i v e l y and e f f e c t i v e l y i t i s e s s e n t i a l that there i s open communication with partners . Furthermore, they supported the notion of sex as the examination of intimacy between people and not as a focus on gen i ta l s (Z i lberge ld , 1992). I t can be summed up by C's statement, "there can s t i l l be intimacy with impotence." The p a r t i c i p a n t s reported since having diabetes they f e e l d i f f e r e n t from others around them because of the changes made to t h e i r l i f e s t y l e . For example, they must be aware of time as i t i s imperative that meals 77 are eaten at a given point so as not to d i s rupt t h e i r s tate of b i o l o g i c a l homeostasis (Trotzer , 1989). I t appears that s e l f -preservat ion or taking care of one's p h y s i o l o g i c a l needs i s more c r u c i a l for men with diabetes i n comparison to t h e i r peers. This i s supported by a l l f i ve p a r t i c i p a n t s who noted that t h e i r minds were much younger than t h e i r bodies. Assoc iated with t h i s d e t e r i o r a t i o n p h y s i c a l l y i s a sense that i t i s happening to them at a much fas ter rate than t h e i r peers . The greatest fear of men i n t h i s study was the p o s s i b i l i t y of going b l i n d . This does not support the f ind ing that some men f ind impotence to be more threatening than loss of a limb or bl indness (Manley, 1986). Depression and f e e l i n g "crummy" about t h e i r s i t u a t i o n was common for a l l p a r t i c i p a n t s at d i f f e r e n t times with diabetes . This f ind ing i s s trongly supported by Handron and Legget t -Fraz ier (1994) who note that depression i s the major psychopathology seen i n pat ients with diabetes . The r i s k of depression for pat ients i s much higher than that of the general p u b l i c . Depression i s common with impotence because 78 pat ients be l ieve the s i t u a t i o n i s hopeless (Young et a l . , 1986). I t i s e s sent ia l to evaluate i n d i v i d u a l s with diabetes for depression because they w i l l be bet ter able to manage t h e i r diabetes with an improvement i n t h e i r emotional and psycho log ica l outlook (Goodnick, 1993). Throughout the t r a n s c r i p t s p a r t i c i p a n t s commented on the importance of maintaining a p o s i t i v e outlook, however, they noted that sometimes the bouts of depression or "feel ing low" seemed to surface out of nowhere. L imitat ions of the Study The number of p a r t i c i p a n t s i s smal l , however, g e n e r a l i z a b i l i t y i s not the goal of the study i n that understanding the e s sent ia l s tructure i s the focus. The in-depth interview approach with a phenomenological ana lys i s provides for consistency of the r e s u l t s (themes), which enables us to r e l a t e these f indings to the experience of other men with diabetes . Another l i m i t a t i o n i s the p o s s i b i l i t y of my own b iases . I attempted to maintain o b j e c t i v i t y throughout each step of the method but there i s a chance that my own subject ive assumptions may have had some in f luence . The methodology used might be seen as another l i m i t a t i o n . I t asked p a r t i c i p a n t s to recount past experiences re la ted to t h e i r l i f e with diabetes . As a r e s u l t , an accurate representat ion of the ac tua l experience may be compromised somewhat i n the r e c o l l e c t i o n of the p a r t i c i p a n t s . Implicat ions for Further Research The purpose of the present study was to explore the psychosocial experience of men with diabetes and the generation of poss ib le questions. The i d e n t i f i c a t i o n of themes, the exhaustive d e s c r i p t i o n , and the e s sen t ia l s tructure have brought l i f e and meaning to t h e i r experience. I t has confirmed that men with diabetes have a plethora of issues to deal with i n coping with t h i s d i s a b i l i t y . A d d i t i o n a l l y , i t has expanded upon the ex i s t ing knowledge of diabetes research by prov id ing a c l earer p i c t u r e of what men with diabetes experience on a day-to-day b a s i s . Further research i n t h i s area has many 80 p o s s i b i l i t i e s . A r e p l i c a t i o n of t h i s study with the same populat ion (d i f ferent par t i c ipants ) would al low us to see i f the themes i d e n t i f i e d are s i m i l a r between the two samples. A study could a lso be done with women who have diabetes to see i f gender plays a s i g n i f i c a n t r o l e i n the experience of l i v i n g with diabetes . P a r t i c i p a n t s i n t h i s study mentioned that diabetes can be a very " inv i s ib l e" disease p r i o r to some major complicat ions appearing, thus, other i n t e r e s t i n g studies may look at add i t i ona l " i n v i s i b l e " diseases or medical condi t ions . I t might be useful to compare and contrast the themes i d e n t i f i e d by other pat ient populat ions: persons who are HIV p o s i t i v e ; persons with AIDS; persons with mult ip le s c l e r o s i s . Research i n these areas could have important impl ica t ions i n the need for involvement of counsel lors wi th in the current medical model. Another group that could be studied i s the medical profes s ion . Diabetes educators ( includes endocr inologis t s and other s p e c i a l i s t s ) , general p r a c t i t i o n e r s , and publ i c health nurses are the members of t h i s group who might be targeted. Research would explore why there i s an ambivalence by some 81 pro fe s s iona l to discuss sexual concerns with p a t i e n t s . Is t h i s apprehension re la ted to t h e i r own views of sexual i ty? Is there fear that they may embarrass the pat ient? Are sexual concerns viewed as being outs ide the realm of bas ic or e s sent ia l medical serv ice? Such questions might be answered by a study of these medical personnel . I t should not be the r e s p o n s i b i l i t y of the pat ient to i n i t i a t e conversations regarding sexual concerns. Sexual i ty no longer needs to be a taboo subject . I t would be b e n e f i c i a l to have a s tructured group in tervent ion with men with diabetes . This group could o f f e r support to the p a r t i c i p a n t s and teach new coping s k i l l s . Measures of the p a r t i c i p a n t ' s self-esteem / se l f -concept and depression l e v e l p r i o r to and fo l lowing t h i s intervent ion may ind ica te that psychoeducational groups f a c i l i t a t e d by a counse l lor or psychologis t are b e n e f i c i a l i n the adjustment to d i s a b i l i t y . In add i t ion to the numerous research p o s s i b i l i t i e s noted above i t may be useful to look at s p e c i f i c areas i d e n t i f i e d i n the present study. Some top ic s to research further are: 82 a) ways to enhance communication between pat ients and t h e i r phys ic ians; b) s trateg ies to enable men with diabetes to recognize that i t i s e s sent ia l that t i g h t c o n t r o l i s maintained for themselves and not for phys ic ians ; c) how to involve partners i n discuss ions about impotence; d) how to enhance publ i c education of d iabetes; e) ways to res tructure and maintain l i f e goals and dreams i n i n d i v i d u a l s with diabetes . I t i s apparent that the research p o s s i b i l i t i e s are vast i n t h i s area. There i s s t i l l a l o t that can be explored i n r e l a t i o n to the psychosocial adjustment to diabetes . I t i s hoped that further explorat ion i n t h i s area w i l l add to our current understanding of the experience of men with diabetes . Impl icat ions for Counsel l ing and Diabetes Education The present study provides ins ight into a s i t u a t i o n that many counsel lors have l i t t l e exposure to 83 because of the d i v i s i o n between medicine and counse l l ing i n psychologica l adjustment to d i s a b i l i t y . The r e s u l t s of t h i s study indicate that men with diabetes are faced with a multitude of challenges i n t h e i r d a i l y l i f e . For these reasons, counse l l ing should be an i n t e g r a l part i n the medical s e t t i n g to a i d i n the adjustment to d i s a b i l i t y . I t i s important for counsel lors (and the medical profession) to understand the challenges these men face and look for treatments to help i n t h i s adjustment. One of the most h e l p f u l ways that a counse l lor could do to help men with diabetes i s simply to allow them to t e l l t h e i r s tory . As mentioned e a r l i e r , a l l p a r t i c i p a n t s found i t b e n e f i c i a l and a f f i rming to d iscuss t h e i r experience. I t i s important to r e i t e r a t e E ' s comment, "I think i t i s good to have these interviews with as many people as poss ib le so that you can get a consensus, or a good idea, of what r e a l l y goes on for these people." Thus, v a l i d a t i o n of t h e i r experience as being f r u s t r a t i n g and chal lenging i s e s s e n t i a l . C l i e n t s may be suscept ible to periods of blame and anger d irec ted to s e l f . In such instances , the 84 counse l lor should address these concerns and help the i n d i v i d u a l see that having diabetes i s not t h e i r f a u l t . This i s not to say that one i s not respons ible for h i s care but rather there are some complications that may r e s u l t even when t i g h t contro l of blood sugars i s maintained. Working from a strength model w i l l begin to b u i l d the c l i e n t ' s self-esteem with the goal of acceptance that he i s coping wel l with the current s i t u a t i o n . Conversely, i f the c l i e n t ' s p h y s i c a l and emotional health are de ter iora t ing because of poor care and d i sregard of the phys ic ian ' s recommendations i t i s necessary to explore why he i s not taking an a c t i v e r o l e i n h i s care . Counsel lors and health educators could help develop programs that a s s i s t people to s h i f t to an i n t e r n a l locus of c o n t r o l , from an external one. In doing so the goals stated i n various themes may be more l i k e l y achieved by men with diabetes taking more r e s p o n s i b i l i t y and f e e l i n g of being i n c o n t r o l . As mentioned by a l l p a r t i c i p a n t s i n the study, there i s a need for support groups. A balance between s tructured and unstructured a c t i v i t i e s was deemed as being fundamental to a group's success. With the 85 add i t i on of s tructured a c t i v i t i e s i t may be more appropriate to l abe l such groups as psychoeducational as t h e i r focus i s to help with the psycho log ica l adjustment to d i s a b i l i t y . The unstructured component would allow the members to discuss d a i l y concerns and problem-solve amongst themselves. Structured a c t i v i t i e s might involve guest speakers ( n u t r i t i o n i s t s , phys i c ians , nurses, u r o l o g i s t s , and other profess ionals ) who provide information to the group i n t h e i r area of expertise or knowledge. A t r a i n e d counse l lor would be i d e a l as the f a c i l i t a t o r to help the group b u i l d t r u s t and safety to explore personal concerns such as sexual i ty and impotence. The f a c i l i t a t o r could arrange for guest speakers and lead a c t i v i t i e s during the s tructured component. Structured a c t i v i t i e s might include: explorat ion of fears ( in trapersonal , in terpersonal , and career ) ; enhancement of communication s k i l l s ; how to begin an exerc ise program; coping s t ra teg ie s ; and, assert iveness ("ask to get"). The p o s s i b i l i t y for a c t i v i t i e s i s u n l i m i t e d . A group s i m i l a r to the one out l ined above would help to take the pressure of f the medical profess ion to provide a l l the emotional support to pat ients and allow for the 86 development of an interdependent r e l a t i o n s h i p between the two d i s c i p l i n e s . Groups could be a place where people l earn to p r a c t i c e competencies for seeking and ge t t ing information. This could help physic ians by pat i ent s l earn ing to state what they need. In others words, pat ients ask questions to get what they r e q u i r e . The f indings of t h i s study are convincing for counse l lors to work more c lo se ly with r e f e r r i n g phys ic ians who could prescr ibe a self-management group for p a t i e n t s . These self-management groups would be supported by d i a b e t i c c l i n i c s at hosp i ta l s and f a c i l i t a t e d by counse l lors . Both groups, pat ients with diabetes and medical p r a c t i t i o n e r s , could benef i t . C l i e n t s may also require ass istance and c l a r i f i c a t i o n i n making dec i s ions . The r o l e of the counse l lor i s to help the c l i e n t explore poss ib le courses of ac t ion i n terms of the consequences that may r e s u l t . For example, i f a man with diabetes i s t r y i n g to decide whether or not to continue to work f u l l - t i m e , i t w i l l be necessary to look at the p o t e n t i a l p o s i t i v e and negative options. I f there i s a p o s s i b i l i t y of ear ly retirement wi th in h i s organizat ion i t may be one 87 opt ion; another option may be a reduced work week; or searching for a new p o s i t i o n . These are only a few of the poss ib le options but i t i s important to note that having the partner ( i f appl icable) involved i n t h i s d e c i s i o n making process i s e s s e n t i a l . Another major issue that counsel lors must be comfortable i n addressing i s impotence, or the p o s s i b i l i t y of i t . As t h i s study has shown, as we l l as other s tudies (Hildebrandt, 1993; Gregoire , 1992; Whitehead, 1988; ) , t h i s t op ic i s often not d i scussed . The counsel lor must be aware of h i s or her own values i n r e l a t i o n to sexual i ty and how any biases may inf luence the c l i e n t s ' dec i s ion . Some questions for the counse l lor to ask himself or h e r s e l f are: Am I embarrassed to t a l k about t h i s subject with men? By d i scuss ing i t am I causing more discomfort and fear i n the l i v e s of these men? This subject should be discussed with the pat ient by the physic ian? These quest ions, i f answered 'yes ' , seem to h i n t the counse l lor i s ambivalent to address these i s sues . I f there i s discomfort i n speaking to these concerns i t would be i n the best in teres t of both the c l i e n t and counse l lor to re fer the c l i e n t . The same discomfort 88 may ex i s t i n profess ionals t a l k i n g about loss of l imbs, b l indness , and other d iabe t i c complicat ions . I f the counsel lor i s comfortable addressing the complicat ion of impotence i t i s e s sent ia l to help the c l i e n t deal with intense emotions that may r e s u l t . This study has found the common emotions that appear are: f ee l ings of inadequacy, anxiety, f r u s t r a t i o n , depress ion, embarrassment, and anger. Once these f ee l ings are deal t with i t would be h e l p f u l to d iscuss the poss ib le treatments for impotence. A d d i t i o n a l l y , i t would be b e n e f i c i a l to have the c l i e n t t a l k to a s p e c i a l i s t i n regards to the treatments. At t h i s time i t i s e s s en t ia l to look at the other s ide of the co in and have the c l i e n t decide whether the a b i l i t y to have an e r e c t i o n , to be potent, i s e s sent ia l to h i s happiness. Looking at a l ternate ways to enjoy oneself sexual ly i s of utmost importance; the a b i l i t y to have sexual intercourse should not be the focus, however, i t must be discussed. I f the c l i e n t i s involved i n a r e l a t i o n s h i p i t i s advisable to have h i s partner come for a v i s i t to discuss the impl icat ions of the treatment. The a b i l i t y to have an erec t ion s u f f i c i e n t for sexual intercourse may not be part of the par tners ' 89 agenda. Open and honest communication between the counse l lor , the c l i e n t , h i s partner , and the medical s p e c i a l i s t s w i l l help to resolve t h i s common but often ignored complicat ion of diabetes . While on the top ic of impotence i t i s important to note an a d d i t i o n a l quest ion, for i n t e r e s t , was asked of the p a r t i c i p a n t s during the v a l i d a t i o n of the themes. They were asked, "What i s more important, or , which would you be w i l l i n g to give up? The a b i l i t y to have an erec t ion (even i f your partner was not w i l l i n g to have in tercourse ) , or , the opportunity to have intercourse? The p a r t i c i p a n t s stated i t was most important to be able to have an erec t ion even i f intercourse was never poss ib le ever again. I t appears from t h e i r response that there i s a loss to the ego i f one i s impotent. The a b i l i t y to have an erec t ion appears to p lay a major r o l e i n the i d e n t i t y of males, thus, i t i s not an issue that should be dea l t with l i g h t l y , or jok ing ly . Counsel lor t r a i n i n g i n s t i t u t e s and u n i v e r s i t i e s are always looking at ways to re s truc ture and strengthen t h e i r programs. Thus, one recommendation i s to ensure t ra inees , i n theory and p r a c t i c e , deal with 90 issues r e l a t e d to adjustment to d i s a b i l i t y . I t i s e s s e n t i a l for our health care systems to involve counse l lors i n the management of d i s a b i l i t y and disease of pa t i en t s . I f counsel lors are aware of pat ients concerns, and t h e i r own values and biases , i t w i l l al low for the "mind" aspect of the body-mind dualism to be more comprehensively addressed. As a r e s u l t , doctors (and other medical s taff) w i l l be able to r e l y on the counse l l ing profess ion to provide a much needed serv ice that would hopeful ly decrease t h e i r workload and hea l th care expenses. I t i s be l ieved t h i s symbiotic r e l a t i o n s h i p might r e s u l t i n i n d i v i d u a l s with diabetes taking a more proact ive approach i n t h e i r care soon a f ter diagnoses. A consequence of t h i s behaviour i s f e l t to be a decrease i n the number, or a slowing down of the onset, of d iabe t i c complicat ions . Th i s approach could be adapted to other populations wi th in the medical model. Summary The purpose of t h i s study was to explore the experience of men l i v i n g with diabetes . This study 91 goes beyond present research i n t h i s area by exp lor ing t h i s experience through the eyes, minds, and bodies of those men who have diabetes . I t allowed the p a r t i c i p a n t s to t e l l t h e i r story and i d e n t i f y the s i g n i f i c a n t and meaningful aspects of t h e i r experience. Important themes that were i d e n t i f i e d have provided us with a better understanding of what i t i s l i k e to have d iabetes . I t i s hoped t h i s ins ight w i l l provide hope for men with diabetes and w i l l r e s u l t i n the development of new programs and services i n the treatment and care of diabetes . Thus, i n he lp ing others improve the q u a l i t y of t h e i r l i v e s , both s ides of the dualism, "a sound mind and a sound body", w i l l be addressed. This journey i n adjustment to d i s a b i l i t y can be symbolized by a h o t - a i r bal loon and basket with two ba l loons . One bal loon represents the psycho log ica l s ide (mind) and the other represents the p h y s i c a l s ide (body). 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G u i r g u i s , W. R. (1992). Impotence i n diabetes: Facts and f i c t i o n s . Diabet ic Medicine. 9(3), 287-289. Handron, D. S. & Legget t -Fraz ier , N. K. (1994) . U t i l i z i n g content analys i s of counse l l ing sessions to i d e n t i f y psychosocial s tressors among pat i ent s with type II diabetes . The Diabetes Educator. 20(6), 515-520. Hi ldebrandt , G (1993). Impotence: Resuming sexual in tercourse . A b i l i t i e s , (3), 86-7. Jacobson, A. M . , Hauser, S. T . , Wert l ieb , D . , Wolfsdorf, J . , Orleans, J . , & Viegra , M. (1986). Psycholog ica l adjustment of c h i l d r e n with recent ly diagnosed diabetes m e l l i t u s . Diabetes Care, 9, 323-329. Jacobson, A. M . , & Le ibov ich , J . B. (1984). Psycholog ica l issues i n diabetes m e l l i t u s . Psychosomatics. 25(1), 7-15. Krauss, D. J . , Lantinga, L . J . , & K e l l y , C. M. (1990). In t r e a t i n g impotence, urology and sex therapy are complementary. Urology. 3_6(5) , 467-470. 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Springhouse, PA: Springhouse Corporat ion. Raymond, M. (1992). The human side of diabetes: Beyond doctors , d i e t s , and drugs. Chicago: Noble Press . Rodin, G . , & Voshart, K. (1986). Depression i n the medical ly i l l : An overview. American Journal of Psych ia try . 143, 696-704. R o l l i n s , M. (1992). Denial? (Not me!). Diabetes Forecast . (7), 67-8. Seligman, M. ( E d . ) . (1982). Group psychotherapy and group counse l l ing with spec ia l populat ions . Balt imore, MD: Univers i ty Park Press . Smith, B. C. (1982). Sexual counse l l ing of d i a b e t i c impotence. Pat ient Counsel l ing and Health Educat ion. 4(1), 10-13. 96 Tierney , L . M . , J r . , McPhee, S. J . , & Papadakis, M. A. ( E d s . ) . (1995). Current medical diagnosis and treatment (34th e d . ) . Norwalk, CT: Appleton and Lange. T r o t z e r , J . P. (1989). The counsel lor and the group: Integrat ing theory, t r a i n i n g , and p r a c t i c e (2nd e d . ) . Indianapol i s : Accelerated Development. T s a l i k i a n , E . (1990). Insulin-dependent (type I) diabetes m e l l i t u s : Medical overview. In C. S. Holmes ( E d . ) . Neuropsychological and behavioral aspects of diabetes (pp. 3-11). New York: Spr inger -Ver lag . V a l l e , R. S. & King, M. (1978). E x i s t e n t i a l -phenomological a l t ernat ives for psychology. New York: Oxford Univers i ty Press . Welch, G . , Smith, R. B. W., & Walkey, F . H. (1992). Sty les of psychologica l adjustment i n d iabetes . Journal of C l i n i c a l Psychology. 4j3 (5) , 648-656. Whitehead, E . D. (1988). Diabetes-re lated impotence: Put t ing new knowledge to waste. G e r i a t r i c s , 43.(2) , 114, 116, 120. Wi lk inson , D. G. (1981). P s y c h i a t r i c aspects of diabetes m e l l i t u s . B r i t i s h Journal of Psych ia try . 138. 1-9. Wi lk inson, G. (1987). The inf luence of p s y c h i a t r i c , psycholog ica l and s o c i a l factors on the c o n t r o l of insulin-dependent diabetes m e l l i t u s . Journal of Psychosomatic Research. 31(3), 277-286. Wing, R . , Epste in , L . , & Nowalk, M. (1986). Behavioral s e l f - r e g u l a t i o n i n the treatment of pat ients with diabetes m e l l i t u s . Psychological B u l l e t i n . 99, 78-89. Young, C. W. & Wlodarczyk, D. (1986). Counse l l ing the impotent man with diabetes . Medical Aspects of Human Sexual i ty . 20, 79-84. Z i l b e r g e l d , B. (1992). The new male s exua l i ty . New York: Bantam Books. 98 Any questions of the p a r t i c i p a n t w i l l be answered i n regards to the procedures of the research. Results of the research w i l l be ava i lab le to p a r t i c i p a n t s i f requested. As p a r t i c i p a t i o n i s voluntary, a p a r t i c i p a n t can withdraw at any time. Withdrawal from t h i s projec t w i l l not a f f ec t subsequent medical care. Any questions about the procedures can be asked of the inves t igators at any t ime. I consent to p a r t i c i p a t e i n t h i s study. I a l so acknowledge rece ip t of a copy of t h i s consent form. Signature of P a r t i c i p a n t Date Name Phone Address Signature of Researcher Page 2 of 2 APPENDIX B Participant Information Age: M a r i t a l Status: Number of Ch i ldren: Year of Onset of diabetes: Type of Diabetes (I or II) Current Occupation: __ Former Occupation: Leve l of Education: 100 APPENDIX C Interview Format Introduct ion Thank-you for volunteering to p a r t i c i p a t e i n t h i s study. As you know my name i s Ron Kee. This study i s a requirement for a masters program i n the Department of Counse l l ing Psychology at the Un ivers i ty of B r i t i s h Columbia. Drs. Marv Westwood and Norm Amundson of the Counse l l ing Psychology Department and Dr. Hugh T i l d e s l e y of the Facul ty of Medicine and St . Pau l ' s H o s p i t a l are my superv isors . We are t r y i n g to better understand the experience of men with diabetes . We would l i k e to hear about the onset and diagnosis of the diabetes. We would l i k e to t a l k about the adjustments you have had to make i n your l i f e . We would a lso l i k e to discuss your concerns about the compl icat ion of impotence. With t h i s information you provide us with we hope to improve services for men with diabetes . The interview w i l l l a s t for approximately one hour. As was noted on the consent form I w i l l be audio- taping your s tory . This w i l l allow me to l i s t e n to you without interupt ions or asking you to repeat yourse l f while I wri te down what you have s a i d . The recording w i l l then be t ranscr ibed , or wri t ten out, so that a l l i d e n t i f y i n g information, such as your name w i l l be removed. Again, a l l information w i l l be held i n confidence, and w i l l only be used for research purposes. Before we begin, do you have any questions or concerns that you would l i k e me to answer? (pause) —Cassette recorder turned on— 1. To begin, perhaps you could t e l l me a l i t t l e b i t about yourse l f and the diabetes. How long have you had diabetes , and what has been the biggest adjustment for you? 2. In r e l a t i o n s h i p to my f i r s t quest ion, can you t e l l me what diabetes means to you? 101 3 . M o v i n g a l o n g , I w o n d e r i f y o u c a n s h a r e w i t h me w h a t y o u h a v e d o n e t o c o p e w i t h y o u d i a b e t e s . 4. C a n y o u t e l l me o f a n y s p e c i f i c t i m e s o r e v e n t s i n y o u r l i f e when y o u f e e l y o u r d i a b e t e s a n d r e l a t e d c o m p l i c a t i o n s w e r e s t a b l e ? 5. C o n v e r s e l y , c a n y o u . t e l l me o f a s p e c i f i c t i m e i n y o u r l i f e when y o u r d i a b e t e s was o u t o f c o n t r o l ? 6 . D u r i n g t h e s e t i m e s what d i d y o u do f o r y o u r s e l f ? How d i d y o u f e e l ? ( t a k e e a c h e v e n t s e p a r a t e l y ) 7. T h e s e i n c i d e n t s when y o u r d i a b e t e s was o u t o f c o n t r o l w h a t d i d y o u n e e d o r r e q u i r e f r o m o t h e r s ? ( d o c t o r s ? n u r s e s ? f a m i l i e s ? f r i e n d s ? ) 8 . What a r e some o f t h e l i m i t a t i o n s o r n e g a t i v e e f f e c t s o f h a v i n g d i a b e t e s ? 9 . What i s y o u r b i g g e s t f e a r a b o u t t h e f u t u r e i n h a v i n g d i a b e t e s , i f a n y ? 10. Some men who h a v e d i a b e t e s a r e c o n c e r n e d a b o u t t h e p r e s e n t o r f u t u r e c o m p l i c a t i o n o f i m p o t e n c e . I w o n d e r i f y o u c o u l d t e l l me a b o u t how y o u f e e l / t h i n k a b o u t t h i s c o m p l i c a t i o n ? 11. I w a n t t o a s k y o u a few q u e s t i o n s a b o u t t h e r e l a t i o n s h i p s y o u h a v e w i t h o t h e r s ( t o make t h i n g s e a s i e r I w i l l show y o u t h e q u e s t i o n n a i r e - p l e a s e r e s p o n d i n r e l a t i o n t o t h e f r e q u e n c y / v e r y s e l d o m > v e r y o f t e n ) . A) T h e d o c t o r s . . . . t a k e my f e e l i n g s i n t o a c c o u n t . B) T h e m e d i c a l p r o f e s s i o n . . . . t r e a t me l i k e a n u m b e r . H) T h e d o c t o r s . . . . d o n ' t l i s t e n t o w h a t I h a v e t o s a y . L ) My f r i e n d s / f a m i l y . . . . n o t i c e how I am f e e l i n g . P) My f r i e n d s / f a m i l y . . . . b e l i e v e i n me. 102 (NOTE: A l l , or none, of these questions w i l l be used with each p a r t i c i p a n t depending on what t h e i r responses were to former questions.) 12. I f you were to be a p a r t i c i p a n t i n a support group for men with diabetes (some who are impotent and others who are concerned with t h i s complication) what would you l i k e to see happen i n t h i s group? (A fol low up interview of approximately 15 to 2 0 minutes w i l l be conducted with in three weeks of the interv iew. A summary of the t r a n s c r i p t w i l l be read and given to the p a r t i c i p a n t . They w i l l be asked for t h e i r comments and whether they would l i k e to make any changes to the summary.) 1. Do you f e e l t h i s summary accurately captures your experience of l i v i n g with diabetes? 2. Are there any thoughts or fee l ings that you would l i k e to add to your story? 3. Is there anything writ ten that you f e e l i s inaccurate , that you would l i k e to have removed or changed? 4. Was the interview method conducive to t e l l i n g your s tory i n the way you wished to t e l l i t ? Do you f e e l that the questions were appropriate or d i d they r e s t r i c t you i n any way with regard to t e l l i n g your story? What fur ther questions might have been appropriate for me to ask? 

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