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Oral health and quality of life in older adults Guest, Jean Lynn 1995

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O R A L H E A L T H A N D Q U A L I T Y OF LIFE IN OLDER A D U L T S by J E A N L Y N N GUEST B H E , The University of British Columbia, 1980  A THESIS SUBMITTED IN PARTIAL F U L F I L L M E N T OF THE REQUIREMENTS FOR THE D E G R E E OF  MASTERS OF SCIENCE in THE F A C U L T Y OF G R A D U A T E STUDIES (Department of Clinical Dental Sciences, Faculty of Dentistry)  We accept this thesis as conforming to the required standard  THE UNIVERSITY OF BRITISH C O L U M B I A October 1995 © Jean Lynn Guest, 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 copying  agree that permission for extensive  of this thesis for scholarly purposes may be granted  department  or  by his or  her  representatives.  It  is  by the head of my  understood  that  copying or  publication of this thesis for financial gain shall not be allowed without my written permission.  Department of C l u n e a l  DeYrfrgJ  The University of British Columbia Vancouver, Canada  Date  DE-6 (2/88)  dohUv  t o , I^S  Science^  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 copying  agree that permission for extensive  of this thesis for scholarly purposes may be granted  department  or  by his or  her  representatives.  It  is  by the head of my  understood  that  copying or  publication of this thesis for financial gain shall not be allowed without my written permission.  Department of Ciimccil Ue*rTgJ Science^ The University of British Columbia Vancouver, Canada  Date  DE-6 (2/88)  dhhUs  to,  11  ABSTRACT  Previous studies have shown a link between oral health and quality of life in older adults. To further explore this relation the question was asked: How do older adults describe the connection between their oral health and their quality of life? The purpose was to explore the link between oral health and quality of life with a group of older adults. The research utilized a case study method. Thirteen independent living elders, ranging in age from 65 to 80 years, participated in tape-recorded interviews. The interviews were structured and followed an interview guide. Participants were asked to describe, in their own terms, their past and present dental experiences, their oral health, and any impacts oral health had on eating, speaking, socializing and general health. They were also asked for their interpretation of the term quality of life and to describe any connection between oral health and quality of life. Findings propose a model of quality of life in the context of oral health. Findings further suggest that the relationship of oral health and quality of life is influenced by factors such as the ability to cope with existing mouth conditions and an individual's level of satisfaction with their mouth condition. Results add a new perspective that can guide future research into the relationship between oral health and quality of life.  Ill  T A B L E OF CONTENTS  Abstract  ii  Table of Contents  iii  List of Figures  v  List of Tables  vi  Acknowledgments  vii  C H A P T E R 1 -- INTRODUCTION S T A T E M E N T OF THE P R O B L E M PURPOSE OF THE STUDY RATIONALE SIGNIFICANCE OF THE STUDY R A T I O N A L E FOR A QUALITATIVE A P P R O A C H R A T I O N A L E FOR THE CASE STUDY M E T H O D C H A P T E R 2 -- R E V I E W OF THE LITERATURE Q U A L I T Y OF LIFE AS A N OUTCOME M E A S U R E IN DENTISTRY APPROACHES TO Q U A L I T Y OF LIFE M E A S U R E M E N T IN DENTISTRY Studies Utilizing Single Item Measures Studies Utilizing Multiple Item Measures Role Theory and Quality of Life Research in Dentistry Conceptual Framework for the Impact of Oral Disorders What is missing? CHAPTER 3 - - T H E METHOD PLANNING The Researcher as the Instrument The Interview Format Selecting Participants Contacting Participants THE INTERVIEWS Formal Thematic Content Analysis V A L I D A T I N G THE FINDINGS  1 1 1 1 2 3 4 6 6 7 7 7 10 11 13 14 14 14 15 16 16 16 17 18  iv C H A P T E R 4 -- FINDINGS INTRODUCTION OF PARTICIPANTS IMPACTS OF M O U T H CONDITIONS Impact on Socializing Impact on Speech Impact on Ability to Eat Impact on Appearance FACTORS INFLUENCING THE LINK B E T W E E N O R A L H E A L T H A N D Q U A L I T Y OF LIFE IN OLDER A D U L T S P E R S O N A L VIEW OF Q U A L I T Y OF LIFE Relationships with Others The Importance of Doing The Importance of Being Able The Importance of Being Happy The Importance of Autonomy Where Does Oral Health Fit? A B I L I T Y TO M A N A G E OR COPE WITH EXISTING CONDITIONS Managing or Coping with Mouth Conditions Mouth Condition Viewed as Temporary View of Impacts on Speech, Appearance and Eating Impacts Viewed as Solutions L E V E L OF SATISFACTION WITH M O U T H H E A L T H View of Existing Oral Conditions Satisfaction with Teeth and Prostheses Personal Assessment of Mouth Health Expectations Regarding Mouth Conditions Positive Comparison of Self with Others Mouth Condition Viewed as Age Related Acceptance of Existing Conditions P A R A L L E L S WITH G E N E R A L H E A L T H C H A P T E R 5 -- DISCUSSION T H E O R E T I C A L IMPLICATIONS FUTURE RESEARCH CONCLUDING REMARKS REFERENCES APPENDIX APPENDIX APPENDIX APPENDIX APPENDIX  A B C D E  19 19 25 25 25 26 27 29 31 31 32 32 33 34 34 35 35 36 37 37 39 39 39 40 41 41 42 42 43 45 45 49 51 52  Question List Interview Guide Letter of Initial Contact Letter of Consent Follow-up Letter  56 58 59 60 61  V  LIST OF FIGURES  Figure 1  The impact of oral disorders, a conceptual framework  12  Figure 2  A model of quality of life, health related quality of life, oral health related quality of life and clinical oral health status  46  Figure 3  A conceptual model of quality of life  47  Figure 4  A model describing quality of life in the context of oral health  48  VI  LIST OF T A B L E S  Tablel  Definition of key concepts  12  Table 2  Factors influencing the link between oral health and quality of life in older adults  30  Vll  ACKNOWLEDGMENTS I would like to express my appreciation to Dr. Christopher Clark and Dr. Michael MacEntee for their guidance and patience during my research and the writing of this thesis. The advice and expertise of my committee members, Professor Elaine Stolar and Dr. Malcolm Williamson, were also appreciated. I am extremely grateful to all the participants who gave so freely of their time and hospitality. Thanks are also due to my colleagues in community dental health in British Columbia, particularly those in the Fraser Valley Region. Their support and encouragement was greatly appreciated.  My greatest thanks goes to my husband Richard and the rest of my family as well as my close friends. Their love and understanding were essential for success.  1  CHAPTER 1 INTRODUCTION  STATEMENT OF THE P R O B L E M  How do older adults (those sixty-five years and older) describe the term quality of life? and given this description, Is the quality of life of older adults impacted in any way by the condition of their mouth?  PURPOSE OF THE STUDY  This study explored the link between oral health and quality of life. The primary research task was to describe oral health related quality of life in the context and framework of older adults.  RATIONALE  Ways of looking at health, that go beyond defining health merely as the absence of disease, and instead view it in terms of physical, emotional, social, spiritual, family and environmental components, have created an interest in quality of life as an outcome measure in health sciences research. Demonstrating a link between oral health and quality of life has significance to the practice of dental hygiene and dentistry. The majority of my experience is as a community or "public health" dental hygienist. It was during a discussion with the administration of an extended care facility that the term quality of life first entered my vocabulary in a meaningful way. While attempting to convince the administration of the facility to dedicate a staff member to providing daily oral care I launched into my usual description of evaluation in terms of the "traditional" outcome measures used in dentistry. These include indices of dental caries, gingival health and  2  oral hygiene. Sensing that this was not creating any enthusiasm I also added that of course quality of life would be improved. This, almost an afterthought on my part, seemingly elevated interest. Apparently, demonstrating that oral care programs impact on an individual's quality of life may stimulate support from facility administration and care staff. This lead me to a review of the literature in search of a measurement tool for oral health related quality of life. However, the review of the literature left me with questions. While the literature indicates that oral conditions impact on quality of life, I was not sure whether this conclusion was true or whether it was what Lather (1991) describes as "impositional." In other words, has the connection between oral health and quality of life been made by older adults as well as researchers? Are oral disorders cumulative across the life span such that their disabling and handicapping outcomes are maximized in the later stages of life as suggested by Locker (1992)? Is Reisine (1988) correct in her suggestion that dental conditions are life long with acute episodes? What are the appropriate dimensions for measurement of oral health related quality of life within an older population? Are the dimensions the same for all older adults? If the dimensions differ, what factors are associated with these differences?  SIGNIFICANCE OF THE STUDY  Dental researchers have written and theorized about the connection between oral health and quality of life. The underlying assumption is that because the mouth is central to functions such as eating and has a role in social interaction through its function in speaking, smiling and kissing then poor oral health affects quality of life. This study has been designed and implemented from a different perspective than those done by others. One of the key questions in this work is whether the connection between oral health and quality of life has been made by older adults as well as researchers. This viewpoint created a fundamental difference between this study and the work that generated existing models — a qualitative approach to inquiry.  R A T I O N A L E FOR A QUALITATIVE A P P R O A C H  Since quantitative methods predominate in dental research it is important to comment on the choice of qualitative methods for this research. These two approaches to research have different philosophical bases. Qualitative inquiry has it roots in phenomenology. This type of research attempts to ". . . inductively and holistically understand human experience in contextspecific settings." (Patton 1990, p. 37) This contrasts with quantitative methods which are based in logical-positivism " . . . which uses quantitative and experimental methods to test hypotheticaldeductive generalizations." (ibid,p. 37) The research published to date relative to oral health and quality of life has been quantitative, utilizing rating scales and questionnaires. It lacks clear definitions of terms and constructs. In discussing health program evaluation, Mullen and Iverson (1986) identified that quantitative methods can be wasteful and inefficient when used before the assumptions underlying program elements have been adequately delineated. They pointed out that the problem commonly occurs when quantitative methods become the routine methods of measuring a construct before the construct itself is understood in the context in which it is being measured. A qualitative approach to inquiry provides an opportunity to explore how older adults make sense of the concept researchers call quality of life. It also seeks to understand the relationship older adults see between their oral health and their quality of life. The mode of analysis in qualitative inquiry is also important to this research. The theoretical basis for the research done to date results from a deductive analytical process. To study the relationship between oral health and psychological well-being, Kiyak and her colleagues (1987) measured well-being and self-esteem. This choice was based on the assumption that oral health promotion programs, creating a sense that a person can improve their own oral health, could result in improved morale and a greater sense of control over one's life. Reisine (1989) based her choice to assess quality of life in terms of well-being, physical symptoms and social functioning on her review of medical literature. Atchison and Dolan (1990) also conducted a  4  review of the literature to identify the dimensions incorporated in the Geriatric Oral Health Assessment Index. Locker and Slade (1993) based their research on a theoretical model adapted from an existing World Health Organization Model (Locker 1988). Glaser and Strauss (1967) refer to this as theorizing from the armchair. Qualitative research utilizes inductive analysis which involves "Immersion in the details and specifics of the data to discover important categories, dimensions, and interrelationships." (Patton 1990, p. 40) This is what has been missing in research on oral health and quality of life. Put more bluntly, dental researchers can continue to conduct inquiries on oral health and its relationship to quality of life with large numbers of randomly chosen older adults, however, if the questions on the measurement tools used have no relevance to the concept of quality of life or oral health as perceived by older adults themselves then what do the results of such research mean?  R A T I O N A L E FOR THE CASE STUDY M E T H O D  Yin (1994) identifies the case study method as useful to investigate a contemporary phenomenon in its real-life context. The case study method is chosen " . . . because you deliberately wanted to cover contextual issues." (ibid.,p. 13) The case study method is also identified as applicable to ". . . explain the causal links in real-life interventions that are too complex for survey or experimental strategies." (ibid., p. 15) Quality of life is not an intervention; however, it is a complex phenomenon and the case study method was chosen to explore its complexities. Yin (1994) also describes the case study method as useful in refocussing research and oral health related quality of life research could benefit from such a reconceptualization. Prior to attempting to quantify a concept, researchers need to have a clearer understanding of the entity they are trying to measure (MacEntee et. al. 1995). A multiple-case study design was chosen for this research. Each case in a multiple-case design can be considered as a whole within itself. Yin (1994) states that including multiple cases in the design can be considered similar to conducting multiple experiments, thus following a replication logic. He considers multiple case  5  designs more robust than single case designs since each case may produce similar results (literal replication) or contrasting results for predictable reasons (theoretical replication).  6  CHAPTER 2 REVIEW OF THE L I T E R A T U R E  Q U A L I T Y OF LIFE AS A N O U T C O M E M E A S U R E IN D E N T I S T R Y  Cohen and Jago (1976) identified the need to determine the social impact of oral diseases and to expand beyond the traditional methods for measurement of oral health status. These traditional methods typically utilize indices of oral disease and dental treatment needs such as those for caries and periodontal disease. Others echo the need for measurement in dentistry beyond clinical indices and the term "quality of life" appears in their work. Sheiham and Croog (1981) indicated the need to refine measures in order to evaluate changes and effects produced by oral health status in such areas as quality of life, social relationships, personality, the work setting, the family and the community. Nikias (1985) wrote about the need to determine the psychological costs of oral disease including pain, esthetics, speech, taste, "and other elements of quality of life." Thines et al. (1987) wrote of the need to demonstrate that good oral status impacts positively on an individual's quality of life. Ettinger (1987) also called for the need for dentistry to establish the relationship between oral health and quality of life. He stressed the need for dentistry to look beyond the clinical indices and develop measures of social function and selfesteem to "show that oral health does improve the quality of an individual's life." Reisine (1988, p. 12) stated: "Quality of life indicators may be especially relevant to dentistry because of (a) the importance of facial appearance in self-image and self-esteem; (b) the nature of dental conditions as life long with acute episodes; (c) the effects of dental conditions as being not totally disabling with more subtle impacts on well-being and psychological functioning . . ." (1988, p.12).  In their literature review, Hollister and Weintraub (1993) identified four areas in which dental status may affect quality of life.' These were eating, self-esteem, esthetics and pain.  7  APPROACHES TO Q U A L I T Y OF LIFE M E A S U R E M E N T IN D E N T I S T R Y  Studies Utilizing Single Item Measures Heyink and Schaub (1986) studied the relationship between denture problems and quality of life for subjects over fifty-five years of age and living independently. To assess "general quality of life" subjects answered, on an undefined eleven point scale, the question: "Taking all things together, how are you these days?" They found denture quality weakly correlated with general quality of life and concluded that the impact of denture problems on quality of life is small. It is not clear from the report how they developed the quality of life measure and I question whether a single global question answered in such a limited fashion would be able to distinguish effects due only to oral conditions. Others, outside of dentistry, have used single item scales and indicate that although they cannot provide the same amount of information as a longer scale, they can be useful when time, funds or researcher skills preclude the use of a multiple-item measures (Cunny and Perri 1991).  Studies Utilizing Multiple Item Measures Other researchers have used measurement tools with multiple questions. These studies also utilized more than one such tool. One presumes this design is constructed to capture different dimensions of quality of life. Kiyak and Mulligan (1987) studied the relationship between oral health and psychosocial well-being of seniors living in nursing homes and also those living independently in the community. They conducted oral health promotion programs "to enhance not only oral health status but also psychological well-being and quality of life." Measurement of psychological wellbeing utilized the Philadelphia Geriatric Center Moral Scale described by Lawton (1975). Selfesteem was measured with a scale originally developed by Coopersmith (1967). They concluded that oral health interventions utilizing self-monitoring techniques had significant effects on psychological well-being. However, they did not describe the relationship between well-being and  8  quality of life. I am left wondering whether they use the terms synonymously or whether wellbeing is a dimension of a larger entity — quality of life. In a study of the impact of dental conditions on quality of life, Reisine (1989) and her colleagues are clearer in indicating that well-being is considered a dimension of quality of life. Other dimensions of quality of life measured in this study were functional capacity (consisting of social, physical, emotional and intellectual functioning); perceptions of well-being (including life satisfaction and health status); and physical symptoms relating to the disease under study. The research recruited 152 subjects from private dental practices who met inclusion criteria for temporomandibular joint (TMJ) problems, periodontal problems and denture problems. The Gill Well-Being Scale (Gill 1984), Spielberger State and Trait Anxiety Scale (Spielberger et al. 1980) and the Corah Dental Anxiety Scale (Corah 1969) measured well-being. They measured physical symptoms with the Kiyak Oral Functioning Scale (Kiyak et al. 1984), McGill Pain Questionnaire (Melzack 1975) and the West Haven Multidimensional Pain Inventory—WHYMPI (Kern et al. 1985). The Sickness Impact Profile-SIP (Bergner et al. 1976 and Pollard et al. 1976) assessed social function. The results indicated that dental conditions can impact on quality of life, as measured. For example, TMJ patients reported effects in all areas. They scored highest on the state and trait anxiety scale, 81 percent reported moderate or severe pain. T M J patients also reported the most dysfunction on the SIP. Problems with social interaction were reported by 81 percent, 50 percent reported a problem with rest and sleep, 56 percent reported dysfunction in leisure activities, 54 percent a problem with intellectual functioning, 48 percent a problem with home tasks, 37 percent a problem affecting work and 35 percent problems in speech and communication. Denture patients also reported problems with social interaction (34 percent), leisure activities (26 percent), home tasks (25 percent), speech and communication (22 percent), rest and sleep (22 percent), intellectual functioning (17 percent) and work (9 percent). Periodontal patients reported the least impact in all areas. However, it is not clear why the researchers chose these particular constructs and measurement tools for the population under study. The report also indicates the use of an incomplete version of the SIP. The standard scale  9  consists of twelve subscales and this study used only those for rest and sleep, intellectual functioning, social interaction, home tasks, leisure activity, work and communication. The report does not include reasons for eliminating subscales such as those for nutrition and interaction with family members. Adaptations were also made to the Kiyak scale, McGill Pain Questionnaire and the \ V H Y M P I . What such adaptations may do to validity and reliability is not addressed. Karuza et al. (1992) studied the relationship between oral health and well-being in fiftyeight non-demented residents of a "skilled" nursing facility. They hypothesized that better oral status is positively related to well-being. They stated that "well-being is defined multidimensionally and is measured by previously validated scales of health status and psychosocial well-being." These included Bradburn's Affect Balance Scale (McDowell and Newell 1987), Rosenberg's Self-Esteem Scale (Goldsmith 1986) and the Index of Sickness by Shanas (Shanas 1984). Nursing staff were also asked to assess residents' well-being. Oral status was measured in terms of tissue anomalies, oral function, degree of xerostomia, oral problem selfreport, hygiene of natural teeth and dentures and coronal and root caries. Neither dentate status or use of dental prostheses were correlated with well-being. Oral function and xerostomia (after eliminating patients on anti-depressant medication) were particularly strong correlates with wellbeing. Of interest was the finding that a higher number of caries and poorer levels of oral hygiene were positively related to well-being. The authors hypothesized that this may reflect the responses of patients who are still active in the daily care of their mouths. While the oral conditions are not ideal for these patients, they function at a higher level than individuals for whom staff provide total care. Karuza et.al. also caution that because of the correlational nature of the study: "It is not clear whether well-being is directly affected by oral status; if better adjusted people take better care of their mouths; or if mediating variables are involved." (1992, p . I l l )  10  Role Theory and Quality of Life Research in Dentistry Reisine (1981) identified role theory as a useful conceptual model for developing measures of the social impact of oral disease. The basic premise of this theory is that an individual may be prevented from fulfilling their normal societal roles by adopting sick role behaviour as a result of an illness or medical condition, in this case an oral condition. Examples of oral problems given are pulpitis, trauma, acute necrotizing ulcerative gingivitis, canker sores and cancer. Reisine suggested that future research was necessary to explore life areas that could be impacted by oral conditions. One such area, she proposed, was quality of life. Other life areas proposed were work performance, family life and leisure activities. She described life domains that could be impacted by oral conditions based on a "conceptual model of life quality that attempts to define life domains on the basis of role situations and values." (ibid., p. 748) Self image was one such domain, with how one perceives self as a key factor in life quality. Malocclusions are given as examples of oral conditions that could have a detrimental effect on self-image. Time to do things was another domain. Reisine theorized that time spent in treatment decreases the amount of time available for family and leisure activities and thus quality of life suffers. Money and availability of discretionary funds were a third life domain identified as a key element of quality of life. The cost of treatment for oral conditions may decrease the amount of such monies available. Reisine's later work does not develop this theoretical model. The 1989 study, discussed earlier, does not refer to role theory as the basis for selection of quality of life measurement tools. Rather, she refers to ". . . the emerging consensus in the literature is that the assessment of quality of life in chronic disease states should include measurements of well-being, physical symptoms and social functioning and that the selection of measures should be guided by the nature of the condition under study." (Reisine 1989, p. 7)  11  Conceptual Framework for the Impact of Oral Disorders In 1988 Locker identified limitations of sick role theory as a base for developing oral health measures. He states that the theory does not provide an adequate conceptual basis for the development of measures capable of capturing the potential broad range of impacts of oral health. He identifies that role theory implies a societal level of analysis (is the individual able to be a productive member of society?) and makes a case for measures based on an individual level of analysis. Such analysis, in Locker's opinion, will have the potential to identify more subtle outcomes of oral conditions. He gives low self-esteem as an example of an impact with personal consequences but few societal ramifications. I think one could argue the point, however, that an individual with low self-esteem may not be a fully integrated, productive member of society. In any event, Locker's model was first proposed in 1988 and appeared in a more complex form in 1992. The model is adapted from the World Health Organization and is based on what he states is a broader concept of health, a concept that includes functional capacity, disability, pain and suffering and cognitive and emotional states (Locker, 1988).  12  Figure 1  The impact of oral disorders, a conceptual framework (Locker, 1992) This figure should be studied with Table 1, which gives definitions of key concepts  Impairment  \/  \1/  Functional limitation  Pain Intervening \ — variables  •si/  Disability Disadvantage Deprivation  Definition of key concepts  Table 1 Impairment:  Anatomical loss, structural abnormality or disturbance in biochemical or physiological processes which arises as a result of disease or injury or is present at birth  Functional limitation:  Restrictions in the functions customarily expected of the body or its component organs or systems  Pain and discomfort:  Self reported pain and discomfort, physical and psychological symptoms and other not directly observable feeling states or manifestations which impinge on the individual or others.  Disability:  Any limitation in or lack of ability to perform the activities of daily living.  Handicap:  The disadvantage and deprivation experienced by people with impairments, functional limitations, pain and discomfort or disabilities because they cannot or do not conform to the expectations of the groups to which they belong.  Adapted from:  World Health Organization (1980) and Locker (1988).  This conceptual model became the basis for the development of the Oral Health Impact Profile (Locker and Slade 1993). The Oral Health Impact Profile (OHIP) consists of forty-nine statements grouped into seven subscales, based on the model: functional limitation, physical pain, psychological discomfort, physical disability, psychological disability, social disability and handicap. Locker and Slade (ibid.) state that "Given the broad scope of the measure and the nature of the problems addressed, the OHIP is akin to an index of quality of life." (p. 831) A clear conceptualization of quality of life is not given. Do the subscales of the OHIP represent the dimensions of quality of life? Locker and Slade utilized the OHIP in two Ontario studies of older  13  adults and their report states that analysis " . . . clearly demonstrates that substantial proportions of this population experienced problems associated with oral conditions [italics mine] on a relatively frequent basis." (p. 837) What is not clear is whether the older adults connected this with an impact on their quality of life in the context of their daily lives. The reference period for the OHIP is the year previous to completion of the questionnaire. This would seem to be a limiting factor in describing the nature of the impact of oral conditions. Pilot interviews I conducted prior to reading Locker and Slade's results revealed that dental experiences varied between different points in a person's life. One of the women who participated in a pilot interview had chemotherapy ten years previous to our conversation. An OHIP questionnaire would not identify the oral health impacts she experienced during her chemotherapy. These could be significant in her overall view of the effect of oral health in her life.  What is missing ? The work reviewed thus far lacks clear definitions of terms and constructs. Descriptions of the models of quality of life utilized and reasons for measuring particular dimensions within a population group are lacking. For instance, why did Kiyak and Mulligan measure morale and selfesteem while Karuza and colleagues chose to measure affect balance and self-esteem (utilizing a different scale)? Before studies with respect to oral health related quality of life continue researchers need to clarify their conceptualization of quality of life.  14  CHAPTER 3 THE M E T H O D  PLANNING  The Researcher as the Instrument Qualitative research does not utilize questionnaires and surveys with predefined categories. I was actively involved with the participants in this research through interviews. This is often a criticism of qualitative studies, one that can be particularly expected in a field where quantitative methods are the norm, since it makes it difficult to assess reliability and brings validity into question. Hammersley and Atkinson (1983) identify that it is impossible to eliminate the effects of the researcher because the researcher is a part of the social world they wish to study. This is what is called the reflexive nature of qualitative research and they stress the importance of reflecting on the effects of this participation rather than trying to eliminate it. It is important to reflect on preconceptions at the beginning of the study and to continue to.reflect on assumptions and feelings throughout the research process. My underlying assumptions at the beginning of the research were based on dental hygiene training materials, and a few published reports supporting the view that oral conditions do impact on quality of life. Subsequently, I began to question whether this is in fact true, and it is the final arrow in the sequence below that I wished to explore:  Loss of teeth or other oral problem  \  Loss of function such as the ability to chew some foods  \  Perceived change in quality of life  Further reading in medical and sociology literature led me to see quality of life as multidimensional. For example, Bergner (1989) suggested that the dimensions of quality of life include symptoms, functional status, role activities, social functioning, emotional status, cognition, sleep and rest, energy, vitality, health perceptions and general life satisfaction.  15  Zhan ( 1992) theorized that life satisfaction, self-concept, health and function and socio-economic factors are the essential dimensions. Fitzpatrick and colleagues (1992) described physical function, emotional function, social function, role performance, pain and other symptoms as dimensions included in many quality of life measures. In social gerontology, Hughes (1990) described the constituent elements of quality of life as individual characteristics of old people, involving physical, environmental, social and economic factors, personal autonomy and subjective satisfaction. I was interested in which of these many possible dimensions, if any, would be described by older adults.  The Interview Format An interview guide was used for each interview. The interview was open-ended and the interview guide was used as " . . . a list of questions or issues that are to be explored in the course of the interview." (Patton 1990, p. 283) Three pilot interviews [APPENDIX A] were conducted to seek an understanding of the concept of quality of life well enough so that meaningful questions could be constructed. The final guide [APPENDIX B] reflected a clearer focus and clarity in the questions because of the experience gained during the pilot interviews. The most significant change was to sequence questioning about oral health experiences prior to asking about quality of life. Personal dental experiences were easier for participants to talk about than was the more abstract concept of quality of life. The switch seemed to put people more at ease and allowed them to talk more readily at the beginning of the interview. The mouth-related context of the interview became clearer to the participants. In keeping with the flexible nature of the research method, the questions were not necessarily asked in the order they appeared on the interview guide. The guide provided a focus for the session but allowed for the conversational style described by Patton {ibid.).  16  Selecting Participants My initial interest in exploring oral health and quality of life stems from my work in continuing care facilities. As discussed in the rationale, I needed a better understanding of just what is meant by the concept "quality of life." I decided the best place to start my exploration was with alert older adults who were willing and able to talk with me. I started with the assumption that the meaning of quality of life differed as life changed. I interviewed men and women of various ages to reflect a range in levels of health and activity. Furthermore, individuals with natural teeth or dentures were interviewed to allow problems with eating and speech to be explored.  Contacting Participants I received a letter from the coordinator of a seniors' centre permitting me to distribute initial contact letters to members [APPENDIX C]. The staff at the centre helped to identify members who would be most likely to talk with me and these potential participants were given contact letters. When I received the signed portion of the contact letter, I telephoned the respondents and arranged a convenient time and place for the interviews. Nine participants were interviewed. I also contacted seniors who had received extensive dental treatment in their lives. These seniors were recruited through the help of friends and colleagues. Four additional participants were contacted in this way, for a total of 13 participants.  THE INTERVIEWS  The interviews took place in a variety of locations at the participant's convenience. A letter of consent was signed prior to the interview [APPENDIX D]. All interviews were tape recorded and transcribed verbatim by the researcher.  17  Formal Thematic Content Analysis Cross-case analysis was chosen as the strategy for analysis of the interviews (Patton 1990) and was summarized across cases, utilizing individual cases in the analysis (Yin 1994) as outlined below. Each step in the process moved the analysis to a higher level of abstraction and classified the data into a scheme consisting of categories (and the properties or dimensions describing them) and themes. Categories describe the data while themes are more interpretive (Merriam 1988).  1.  Coding the data in the margins of the transcripts. This was the first level of abstraction and involved rewriting incidents or facts as concepts (Corbin 1986).  2.  Notes were made in the right margins of the transcripts of thoughts or ideas that occurred regarding tentative categories or themes.  3.  To sort through and organize the data for each case, and to ensure that the analysis remained linked to the research goals and questions (Merriam 1988), the codes were grouped around the research questions: the quality of life concept, the impacts of the mouth on speech, eating, appearance and socialization, and the relationship between oral health and quality of life.  4.  To proceed to a higher level of abstraction the codes were analyzed and regrouped within the clusters. This process generated categories and the properties describing them. I began to ask questions of the data as suggested by Corbin (1986). I realized that another underlying assumption I held was that the participants would readily connect oral health and quality of life, but when this connection did not appear in the data I searched for  18  "recurring regularities" as recommended by Patton (1990). As the categories emerged, they were written on the top of a piece of paper with sample statements from each case below them and I worked back and forth between the transcripts and the category sheets to verify the accuracy of the categories, to expand on their properties and dimensions, and to ensure the plausibility of the emerging categories (Merriam 1988).  5.  I constructed a chart (Merriam 1988) to organize the data under the headings: Properties and Dimensions; Categories; and Themes. A useful question at this point was suggested by Kressin et.al. (1995) and considered the factors that might move oral health into or out of importance to an individual's quality of life. Charting the emerging categories and their properties and dimensions with this question in mind continued the evolution of the categories and lead to the development of themes (Table 2).  V A L I D A T I N G THE FINDINGS  Yin (1994) describes a review of the research report by participants as a method of validating research results. I provided a draft copy of Chapters Four and Five to five participants. I chose these key informants based on their expression of interest in reviewing the thesis and provided each of the five with a draft of the findings and discussion along with a letter [APPENDIX E]. This process did validate the findings in that none of the reviewers made any suggestions for major corrections to the content of the findings or the discussion. I received both verbal and written comments on the high quality of the work. The review was also useful in detecting grammatical errors. However, I did not share the findings with all participants, which may detract somewhat from the study. I was reluctant to ask participants to review the large amounts of material from the cross-case analysis when they had not expressed a desire to do so. I considered this to be a large imposition on people who had already offered me time and hospitality.  19  CHAPTER 4 FINDINGS  INTRODUCTION OF THE PARTICIPANTS  Thirteen people participated in the research; seven women and six men. The average age of the women was 71 years (range 65 to 80) and of the men was 67 years (range 65 to 70). They worked in a variety of fields before their retirement, including nursing, social work, psychiatry, education, theology, trades, sales, engineering and the armed forces. All participants lived independently and had some type of leisure activity or hobby, including walking, writing, working with computers, volunteering, going to the theatre, playing cards, baby-sitting grandchildren, gardening, crafts, traveling, reading, acting in drama groups, playing the piano, playing snooker, dancing, slo-pitch baseball, volleyball, golf and lawn bowling. Although it was not a specific question, some participants did describe a variety of medical problems during the interviews. These included four people with heart conditions, three with back problems, three with hypertension, two with ear problems, two with arthritis and individuals with sinus problems, migraine headaches, anxiety and allergies. Two participants were edentate with complete dentures whereas the others were dentate. Five of the dentate participants have removable partial dentures and one a complete upper denture. Ten of the participants visit a dentist or denturist regularly. Gathering a detailed dental history of each person was not an objective of the study. However, I did ask each person to describe their past dental experiences and answers to this question provide a dental history from the participants' points of view. Hilda Hilda is eighty years old. Her father was a dentist and she describes herself as having soft teeth as a child. She lost a number of teeth throughout her childhood and more during her pregnancies. She has an upper removable partial denture. Her front teeth began to separate when she was in her seventies and she had orthodontic treatment to close the spaces. A prosthodontist  20  made her a partial denture designed to keep the spaces closed. She visits a periodontist three or four times each year. She experienced cancer of the tongue ten years ago. The tumor was treated surgically first. A subsequent recurrence was treated with large doses of Vitamin A. She goes for regular monitoring and currently has no problems. Hilda expressed satisfaction with all the dentists she visits. She describes herself as "quite satisfied with my teeth." Fern Fern is sixty-five years of age.  She is proud of a bridge placed forty-one years ago to  replace a double tooth. She is quite sure she will eventually have dentures and expressed concern about how they will fit. Fern had two molars break during preparations for crowns and had to have the teeth extracted. She has not replaced these teeth and described her face as "sunken in." She was upset after the second tooth broke. "I changed dentists because I was so furious, I didn't know who to blame . . . I just sort of gave up . . . I didn't like his attitude anyway." Fern feels her teeth broke due to the effects of carbon monoxide. Her furnace was emitting high levels of carbon monoxide three years ago and required repair. She also experienced gum problems at that time and visited a periodontist for treatment. Fern had the furnace repaired and she had been all right for the last year and one half. Murray Murray is sixty-seven years old. He described poor dental care in his younger years. He told me that in the past he did not take care of his teeth. During his first visit with his present dentist, Murray found out that all his teeth were quite loose and one required immediate extraction. The dentist told him he would lose his teeth unless he started taking better care of them. He appreciated the dentist telling him that and has taken good care of his teeth for the last seven years. He feels his gums are in much better shape now. He would like all elderly people to know that keeping their teeth requires work on their part as well as on the part of the dentist. Murray has crowns on his front teeth as the result of an accident. He describes himself as quite happy, particularly with his dentist. He describes his current dentist and previous dentist as "two people that would never try to put anything over on you."  21  Joyce Joyce is also sixty-seven years of age. She describes her past dental experiences as "hideous." She had buck teeth as a child. She thought her profile was gross and said, "You know what that can do to a kid." Joyce experienced terrible pain each time she had a filling placed. She uses the word "butcher" to describe her dentist. When extraction of an abscessed tooth brought relief she never had a filling done again. She let the tooth go until it required extraction. Eventually she had all of her teeth extracted and she has complete dentures. She stated, "I was never so happy in my life as to be rid of my teeth." Joyce is "not enamored with the dental profession." She expressed annoyance that her dentist wanted to put braces on her children's teeth rather than pull them. She had five children and could not afford the braces then. Joyce has severe arthritis and said, "I don't have problems with the dentures but there's some days when my jaw hurts so much that I can hardly wait to get home and take them out." At the close of the interview she said, "I'm not unhappy with them . . . they don't fit well. They never will. But I'm still far better off with these than I ever was with my own teeth." Gwen Gwen is seventy-six. She started receiving dental care at the age of nine, through the public health dental scheme in England. She has visited the dentist regularly through the years. At one time she had her "eye teeth" extracted to relieve migraine headaches but the extractions did not give her relief. She has bridgework and a removable partial denture. Her teeth are cleaned frequently by her dentist. She mentioned that the medications she takes make it difficult for her to keep her gums in good condition. Gwen is looking forward to receiving a dental plan soon through the employer from which she retired. She complained of a dry mouth and commented that her mouth "tastes like a sewer all the time." When'asked to describe the condition of her mouth, she replied, "at seventy-six I don't think I have anything to grumble about."  22  Mary Mary is seventy four and told me she received irregular dental care as a child due to a lack of money. She had her "eye teeth" removed in her teens to relieve a crowding problem. She played basketball and grass hockey and told me that before she had the teeth extracted she suffered from cut lips when hit in the mouth during a game. Extracting the teeth created space, allowing the rest of her teeth to move and eliminated the problem. Mary has not had too much trouble with her teeth and she currently visits the dentist once each year. She does not have dental appliances of any kind. Her teeth were solid and good when she was young and she does not recall ever having a toothache. Lydia Lydia is seventy-two. Like other participants she also had irregular dental visits when she was young. She went to the dentist when she had a toothache. She had crossed upper front teeth and constantly had to have the filling between them replaced. She also feels that pregnancies were hard on her teeth. When she had a young family and not much money the dentist advised her that there was no use spending more money on her teeth since they were so poor. Consequently, she had them all extracted and complete dentures placed. She was happy with the dentures since she now had straight teeth. She also commented that it had always been painful when the filling between her front teeth fell out. She supposed that air got in and bothered the nerve. In any event, she had to visit the dentist right away to have the filling replaced. She was happy with her dentures, but in 1985 thought she should get a new set. The dentist she visited recommended a mandibular augmentation, which she had done. Lydia expressed some concern that the graft may be failing and she experiences some numbness in her lower lip and chin. I asked Lydia to describe the condition of her mouth and she replied, "I think it's healthy and I guess that's all I can expect. I have no other complications from it." Mike Mike is sixty-nine and has not had much work done on his teeth. He "had" to visit the dentist when he was a child at school in Ireland. He also "had" to have his teeth fixed when he  23  entered the air force. He has visited the dentist three times since, the last time being five years ago. The teeth he has are natural teeth. Mike smokes and describes his teeth as black and dark. He told me he would visit the dentist if his teeth bothered him. BiU Bill is seventy and described his teeth as "reasonable." He still has most of his natural teeth and the dentists he has visited have told him his teeth are hard. He told me he has had a few cavities in his lifetime and some extractions. Bill has an upper removable partial denture. He has always had a dentist and thinks this is important. He is currently experiencing a problem with his bite. He described how the lower front teeth are scraping against the upper teeth causing them to "thin." He is having difficulty determining the cause. He thinks the fact that he favored one side for chewing, following a painful root canal, could be one reason. He has also had adjustments made to his partial denture in an attempt to correct the problem. He also thought he might be grinding his teeth at night so his dentist made him a night guard. He described the condition as not getting any worse, although there is some sensitivity. He likened the feeling to how "the soles of your feet can feel the ground better [when the soles of shoes wear thin]." During the interview he said, "of course I'm seventy so I guess I'm in pretty fair shape compared to some people that I know that have a complete set of false teeth . . . so I feel I'm more or less doing satisfactory." Tom Tom is sixty-six years of age. He grew up in Australia and recalls dental people visiting his school. He received compliments on his good teeth during those visits. He had good teeth into his twenties. Then he had a family of four children and no dental scheme and the resulting lack of money meant he had his teeth pulled rather than filled. He described himself as having "quite a few gaps", but the teeth remaining are his. He has a removable partial denture but finds it a nuisance and "a foreign body in my mouth that I haven't given myself a chance to get used to." He visits the dentist regularly and considers he teeth better than average for his age.  24  Joe Joe, who is sixty-eight, recalled fracturing his front teeth at the age of eleven in an accident involving a sling shot and a rock. The teeth were "capped" a few years later when he entered the army. He described these teeth as continuing to deteriorate and he eventually lost them in an accident during a rifle experiment. Things "spread from there" until he presently has four remaining lower natural teeth. Joe has a complete upper denture and a lower removable partial denture, and he assesses his mouth as fine. He does not visit the dentist regularly. He has his teeth cleaned "now and then." He expressed pleasure with "the excellent job" done by the denturist who made his denture. The four remaining teeth "seem okay" and he would like to hold on to them if he could. Gerry Gerry is sixty-five. He grew up in a small town where the local dentist had an alcohol problem. Gerry only visited him "when [he was] in desperate straits." He described himself as never having a great fondness for dentists. He did not go to the dentist unless he absolutely had to. That is, until eighteen years ago when he met a dentist he quite liked. When he told her he did not believe in dentists she invited him to visit her office. He did, and has been going ever since. He goes every six months and describes it as "great fun . . . we keep up with each other's stories." Gerry has a bridge and a couple of missing teeth. He describes his teeth as "pretty good." Marilyn Marilyn is sixty-six. She told me that dental care in her younger years is not what it is now and this resulted in extraction of some of her teeth. She lost enough upper teeth that she has a removable partial denture. She describes herself as a "dental cripple" and accepts the fact that her mouth is "as good as it is going to be." She likes all the specialists she has visited— prosthodontist, periodontist and endodontist. She described one half of the teeth in her mouth as having posts. Marilyn considers herself fortunate "because I think that what's in my mouth is the best that could possibly be put there."  25  IMPACTS OF M O U T H CONDITIONS  In some cases discussion about the impacts listed below was generated by direct questions about effects on socializing, speech, eating and appearance. Other participants described the impacts while relating their past dental experiences.  Impact on Socializing Three participants discussed effects that their mouth has on social activities. Lydia did not go for coffee with her friends while waiting for the surgery for her mandibular augmentation to heal, until the point that she could wear a denture. Joyce described the lasting effect of her "buck teeth" on her desire to socialize with other people when she said: "Well that hangs on even today. I don't mind going out and I don't mind joining in but for just so long. Then I get the feeling that they're laughing at me. You know, it just keeps coming back." Gerry talked about the effect of toothaches on his desire to socialize in his younger years. He does not experience toothaches anymore, so no longer considers this a problem.  Impact on Speech Five participants described impacts of their mouth on speech. Lydia found she did not "talk right" during the healing period following her surgery. Gwen told me that after she had a bridge placed her ability to perform in amateur theatre was affected. " . . . I did find after, I forget what it was I had done I think it was this bridge, that I can't say Gilbert and Sullivan. You know, the rapid stuff. No, I can't do that anymore." Marilyn and Tom both found that their removable partial dentures affected their speech. Marilyn noticed that she seemed "to be a bit sibilant for a while" when she first received her partial. She  26  still notices the effect once in a while. Tom is not able to wear his partial denture all day and told me: " . . . it seems to interfere with my speech. It makes me lisp. So it's been my habit, when I think of it, to put it in at breakfast and take it out right afterwards."  Hilda found she lisped following surgery for cancer of the tongue and described her experience: "I did have some trouble with words with S's in them you know . . . But gradually that went away. I don't seem to lisp anymore."  Impact on the Ability to Eat Eleven of the participants talked about how their mouth affects eating. This included the importance of teeth in eating and impacts of the mouth on choice of foods and methods of food preparation. Five people expressed the importance of teeth in eating particular foods. Mary and Murray both have natural teeth and identified their importance in eating steak. Tom finds his partial denture important in eating hard foods such as toast. Mike, who has natural teeth, and Joe, who has a complete upper denture and lower partial denture, told me they "can eat anything." Three people have altered their selection of food due to the condition of their teeth or mouth. Fern is careful with raw foods and does not eat carrots or nuts. She told me: "Well, yes now that I don't have these two [molars], I'm not chewing on that side. I have to be very careful with raw food, vegetables and things . . . I try to remember to chew on that side . . . I don't know whether it makes any difference if you're chewing more on one side than the other. . . It's just that I don't chew well on the front. I don't chew on carrots. I don't bite on them. Just for security. As a precaution." Marilyn cannot chew corn off the cob, does not bite into an apple anymore, and like Fern, avoids biting anything hard with her incisors. Joyce, who has arthritis, finds she does not chew food well because of jaw pain. She chooses soft foods and has difficulty with foods such as celery and lettuce.  27  Three participants mentioned preparing their food differently as a result of a mouth condition. Since her surgery Lydia has cut foods such as apples before eating them. She peels and slices them. She ate only mashed foods immediately following surgery. Marilyn, who has a removable partial denture, does not remove the peel but slices apples into wedges before eating. She finds eating corn off the cob the biggest problem so removes the kernels from the cob with a paring knife. Hilda ate "baby food" for a while following surgery to remove the malignancy from her tongue. Joyce finds arthritis can make it painful to chew. Marilyn experiences discomfort when eating berries because the seeds get under her partial and Bill has some sensitivity when eating flaked cereal. Tom finds that the loss of some of his teeth causes him to take longer when eating a meal.  Impact on Appearance Conversations about appearance were more difficult to analyze in that some impacts were directly experienced by the participants while others were impacts they noticed in others. Lydia told me her dentures improved her appearance compared to her natural teeth, which were crossed in front. Her "pointy chin" was a factor in her decision to proceed with a mandibular augmentation. She was also conscious of her appearance during surgery and hid her lack of teeth from others. She talked about going curling during the healing process: " . . . I did curl because everybody understood that I was having this surgery. But I never went down until the game started . . . I never went for coffee because I went right home . . . with curling . . . you could get tucked into your sweater. . . . I hated anybody seeing me without the dentures . . . " Fern described how the loss of two molars has caused her face to be "sunken" on one side thus creating a "cosmetic problem." I have already mentioned how Joyce described her "buck teeth" giving her a "gross" appearance as a child. She was "glad to be rid of her teeth" but was conscious of her appearance prior to insertion of the dentures and "didn't open my mouth too wide." If she needs to remove her denture now, to relieve pain in her jaw, she does not go out  28  and "if somebody comes to the door I have to dive for them." Bill saw himself on television and noticed a space created by a missing tooth. He described what he saw by saying: " . . . you never really see yourself, but I was on T V one time and I happened to notice it. . . you're sort of trying to present a good front and all of a sudden you're picky . . . " Murray had his teeth bleached to improve his appearance when playing piano in public. Marilyn related how she did not smile much when she broke a front tooth on a piece of hard bacon. Bill described some people as having "bad looking teeth and a lot of discoloration." Tom also described looking at others and told me: "I do happen to notice. I look at people and see if they have dentures or not and an awful lot of them have. . . . I notice bad teeth quickly. If people have got their own and they're not in good order, I spot those. People with good teeth, my next question is: Are they their teeth?" Participants had varying views of the effect of dentures on appearance. Lydia and Joyce, for instance, told me their dentures improved their appearance; Marilyn said that her appearance improved with the construction of her partial denture. Gwen has natural teeth and described them as "a rotten lot of teeth to look at." She is envious of friends with dentures because they have "beautiful looking teeth." When talking about a friend who has dentures she said: " . . . every one is completely artificial but they're lovely teeth. She looks very nice. I think it improves your appearance. Really." Hilda has seen both good looking and bad looking dentures. She said: "Some dentures look so natural that they're nicer than your own teeth, but there's some dentures . . . I know a man who has complete upper denture and his teeth look rather pasty and there seem to be far too many of them. You know, when he smiles you see a whole mouthful of teeth and I don't think I would be happy with that."  29  FACTORS INFLUENCING THE LINK B E T W E E N O R A L H E A L T H A N D Q U A L I T Y OF LIFE IN OLDER ADULTS  How these impacts are viewed by the participants, that is, relative to their whole life situation, is important to my conceptualization of the factors influencing the link between oral health and quality of life. Table Two presents a diagrammatic representation of the major findings of this study. The findings are key to answering the two major research questions: How do older adults describe the term "quality of life" and, given this description, is the quality of life of older adults impacted in any way by the condition of their mouth? The findings represented in the table are elaborated upon in the text that follows.  30  Table 2 Factors Influencing the Link Between Oral Health and Quality of Life in Older Adults DIMENSIONS family friends spouse activities hobbies interests ability to adapt physical health outlook on life attitude financial comfort enjoyment happiness contentment satisfaction independence choice  • • •  • • •  CATEGORIES  THEMES  Relationships with others  Importance of doing PERSONAL VIEW OF QUALITY OF LIFE Importance of being able  Importance of being happy  Importance of autonomy  mouth condition viewed as temporary view of impacts on speech, appearance and eating impacts viewed as solutions  Managing or coping with mouth conditions  satisfaction with teeth satisfaction with prostheses personal assessment of mouth health  View of existing oral conditions  positive comparison of self with others mouth condition viewed as age related acceptance of existing conditions  Expectations regarding mouth conditions  A B I L I T Y T O M A N A G E OR COPE WITH E X I S T I N G M O U T H CONDITIONS  L E V E L OF S A T I S F A C T I O N WITH M O U T H H E A L T H  31  PERSONAL VIEW OF Q U A L I T Y OF LIFE  Some participants identified the personal nature of an individual's description of quality of life. " . . . I've been trying to frame an answer because it's difficult. Because the answer will be subjective anyway and it's a relative term. You know, if you ask somebody from Rwanda, what' a good quality of life they might be happy to get a glass of milk everyday . . . " (Tom) " . . . working with somebody in poverty . . . we ask questions about the quality of their life. And then of course that becomes a judgmental thing too. They might be quite satisfied with the quality of their life." (Gerry) Although all of the participants described quality of life in different ways there were some common threads to their descriptions. These "threads" are the dimensions of the categories described below:  Relationships with Others Eight of the participants mentioned the importance of having other people in their lives. Some talked about family, others about friends and some about both. Conversations included comments such as: " . . . if you have a partner that makes a lot of difference. But I am so fortunate I have so many good friends. They are a real boon." (Gwen) "You know if you have good social relationships and friends and so on, then you can have a good quality of life." (Lydia) Bill described how he and his wife like "to do things together" and also mentioned his children and his siblings.  32  The Importance of Doing The idea of "doing things" figured prominently in many of the conversations. Eleven of the participants made reference to this category. Some mentioned specific activities or interests they are involved with, and these have been listed previously in the introduction to participants. Others spoke in more general terms. "Quality of life is being able, from whatever point of view, to do the things that you enjoy." (Marilyn) "Well I don't think in terms of riches but I think in terms of being able to do at least a few of the things that you wanted to do . . ." (Joyce) "Being able to do all the things I figure that I'm very fortunate to be able to do." (Mary)  The Importance of Being Able As is evidenced by the preceding section, ability also emerged as a category. There are a number of dimensions to this category, any of which may affect an individual's activity or interest level. Nine of the participants talked about physical health. For example: "I'm not feeble or anything like that. I can do anything. I can walk. Mind you, as I say there's hills and stuff like that. It will take me a little while getting up them but eventually I'll make it." (Mike) "If you don't feel good you can't do anything. At least I can't... I feel that so many of my days are wasted because I get up and feel pretty good and a couple of hours later all I want to do is sit down and stare at the wall." (Joyce) "I'm very lucky. I play the piano. I have absolutely no arthritis anywhere." (Murray) An individual's outlook on life and their attitude and desire to be active are also dimensions of this category. Five participants talked about attitude and desire to be active. After describing how fortunate she feels to be able to do all the things she wants, Mary went on to say: "And you have to want to do them. Lots of people sit home and never venture out. Never."  33 Hilda said: "Well I think you know, good quality of life depends greatly on your state of health doesn't it? Also on your mood . . . if you're sick and handicapped, but even handicapped people can do well, a lot depends, I suppose, on your state of mind. And it also depends on what interests and hobbies you have. I mean if you never crack a book and you're not very interested in TV and you're not terribly interested in other people, it's pretty dull isn't it." Her comments also describe the importance of physical health as well as the activity and interest dimensions of the category "The Importance of Doing." Four participants mentioned financial comfort as a dimension of being able to do things. Tom mentioned economics along with physical health: "Well I think quality of life is determined by economic factors and physiological factors. If you're fit and healthy and you've got a good income, a satisfactory income, then you've got a satisfactory quality of life." Others said: "There's lots of things I like to do that I can't afford to do." (Mike) "Quality of life is being able from whatever point of view, to do the things that you enjoy. Whether financial, opportunity . . . " (Marilyn)  The Importance of Being Happy In the previous quote Marilyn used the word "enjoy." Others also used this term in the context of quality of life. Mary said she preferred the term "enjoyment of life" to quality of life and described quality of life as "the things that keep you happy. The things that you enjoy doing." Bill also talked about quality of life as an individual's ability to enjoy life. Finances were included in his discussion as a factor that could affect an individual's ability to enjoy life. Bill and Gerry spoke about their "satisfaction" with life and Gwen about the importance of "contentment."  34  The Importance of Autonomy Linked with ability and enjoyment is the key word used by several participants and evident in the previous quotes from the transcripts—want. Doing and enjoying the things that an individual wants to do involves independence and choice. Gwen is concerned about her husband falling on the ice while he is curling, but it is an activity he enjoys and she will not ask him to quit: "I would never say don't do that. I thought about it a lot, but no way." Hilda does not like to go to her daughter's home at the lake anymore because: " . . . well when I go there I can't climb up on the rocks at the back of the establishment to pick blueberries the way I used to and I'm not as keen on swimming now as I used to be because I can get down the ladder but I can't get back up again you see? An in and out of the boat I need someone to give me a hand. So I just don't like being a nuisance . . . Other people don't mind but I'm too independent I guess. I don't want too much assistance."  Where does oral health fit? Even though the participants were aware of the dental context of the research none of them mentioned oral health in their descriptions of quality of life. When asked the direct question about the connection between the condition of their mouth and life quality they all had some difficulty describing a link between the two. Seven participants responded to my direct question by saying they did not make such an association. These responses are illustrated by: "Not tome. . ." (Murray) " . . . I don't think that would have anything to do. with my teeth." (Mike) " . . . my dentures or dental care doesn't have too much to do with quality of life. No." (Fern) "Oh no. I don't make any connection with my teeth at all." (Marilyn) Six participants described a connection, but with some hesitancy. Joe said: " . . . well the connection is, I suppose, that my teeth aren't bothering me."  35-  Other comments included: " I suppose, in a way. Because when it gets sore and when it gets too tense I just have to give up and go [take out her dentures]." (Joyce) " . . . I don't . . . well I guess, sure it has a bearing because I can eat." (Lydia) "I guess so . . .There's probably all kinds of problems you could have that would affect it yea. But I've been lucky." (Bill) Due to my assumption that participants would make a connection between their oral health and quality of life I was quite panicked at this stage, of analysis, thinking that the research had not produced any meaningful findings. Then, as discussed in Chapter Three, I asked myself why the participants were having difficulty describing oral health as part of quality of life and what factors might move oral health into or out of importance in a person's life. When I read the transcripts with these questions in mind the following themes emerged, and are listed in Figure Two.  A B I L I T Y TO M A N A G E OR COPE WITH EXISTING M O U T H CONDITIONS  Managing or Coping with Mouth Conditions As participants talked about their dental experiences, past and present, they talked about impacts their mouth had, or continues to have, on socializing, speech, the ability to eat and appearance. These have already been described in a previous section. The conversations reveal a very different picture than the one created by Locker's suggestion that: " . . . oral disorders are cumulative across the life span so that the disabling and handicapping outcomes of oral conditions are likely to be maximized among people in the later stages of life." (1992) To me, perhaps unfairly, this suggestion evokes a picture of people experiencing a steady decline in oral health through their life and reaching their later years faced with pain, tooth loss and difficulties with eating and speech. It is also implied that they have less attractive teeth than when  36  they were younger. The worry associated with the effect this has ort their lives, includes a decreased desire to socialize with others. However, this does not describe the participants in the present research. This is not to say that they have perfect oral health. In our conversations they talked about how they have experienced, or continue to experience, what could be called by a dental professional a less than ideal mouth condition. How the participants view these conditions are categories of the theme I have labeled "Managing or Coping with Existing Mouth Conditions."  Mouth Condition Viewed as Temporary Lydia described the effects her mandibular augmentation had on socializing, speech and eating. The effects were temporary and only experienced after her surgery. She spoke of an end point to her problems while talking about the period immediately following surgery: "I hated that from August until next March . . . you could sort of see the end." I have already described the impact Hilda's cancer surgery had on speech and eating. This would also seem to be a particular episode when she experienced difficulty and she suffers no chronic ill effects. In fact, she did not recall the surgery when I asked about any difficulties experienced with eating due to her teeth. My question regarding the ability to speak prompted this reply: " . . . The only time I ever had any trouble with that was when I had a small carcinoma of the tongue . . . for quite awhile, well immediately post-op, I felt as though I had a tennis ball in my mouth . . . I had difficulty swallowing . . . I ate baby food for awhile but that wasn't too much . . . I discovered the baby lamb was really quite nice. . . . I went back to see [her doctor]. First of all every two weeks and then once a month after that and everything was fine. . . I did have trouble with words with S's in them but gradually that went away. I don't seem to lisp anymore." Gerry recalled how he had toothaches when he was a young man, and disliked visiting the dentist, and these affected his desire to socialize with others. Toothaches are part of the past now that he has a dentist he likes, consequently his teeth no longer affect his social life in a negative way. The type of experiences just described are considered as particular episodes that have been dealt with. Other conditions are chronic and individuals continue to cope with the residual effects. Another  37  dimension of this category is how a person views the impacts, longer term, of mouth conditions on their life.  View of impacts on speech, appearance and eating I struggle with a tendency to focus on the effects of mouth conditions as negative. For example, I have described how Marilyn removes the peel from apples and finds it difficult to eat corn directly off the cob. As a dental hygienist I view these as negative impacts caused by the condition of her teeth. Marilyn placed such inconveniences in the perspective of her life when she said: "It's not quite as hot that way. Some of these things I miss. It's not quite the same. But if that's all I have to gripe about, it isn't much. And that really is about the only thing I can think of." Fern described the cosmetic problem caused by the loss of two molars. When I asked whether the condition of her mouth has any affect on socializing with others she told me: ". . . No. No. I mean you [have] better things to worry about. Better things to worry about. It's not the top of my priority list." Tom talked about his partial denture as a "nuisance of a thing." When I tried to pursue that perhaps something could be done to create a better fitting more comfortable appliance that he would not need to remove after eating, he said: "Oh I think the fits quite good. There's no ulceration." The participants' views of the impacts their mouth has on their lives are not as negative as I thought they would be. Impacts Viewed As Solutions How do participants cope with mouth conditions? They told me that they avoid foods that give them difficulty such as steak and apples; change how foods are prepared such as removing corn from the cob, peeling apples or cooking foods to soften them. Gwen talked about a "bad taste in her mouth." I thought this might be a factor affecting socializing since she said it  38  creates concern about bad breath. But, she told me she relies on her friends to tell her if there is a problem and uses breath mints and mouthwash. As a dental hygienist I view the need to use mints and mouthwash as an impact. Gwen uses these as methods of coping with a chronic condition. Other participants also described their solutions to less than an ideal oral status. While telling me about some sensitivity he experiences when eating flaked cereal, Bill said: "I guess you learn to adjust by switching to the other side [of your mouth]." As mentioned, Tom finds his partial denture a nuisance. It interferes with his speech but is useful in eating. He told me: "It's been my habit, when I think of it, to put it in at breakfast and then take it out afterwards." The people I interviewed view the impacts of the condition of their mouth differently than myself, as a dental hygienist. Their mouth is not at the top of their priority list although I would like them to place it at least close to the top. What I view as impacts they view as solutions to problems and ways of managing or coping with the state of their mouth. This viewpoint, held by older adults that I interviewed, creates factors that could decrease the importance of oral health to an individual's quality of life. My hypothesis is that a problem a person feels they have found a solution for or a condition they feel they are managing or coping with is not likely to be of great importance relative to quality of life. A question arising from this becomes: Will oral health become important to quality of life if an individual no longer views himself or herself as coping or managing well with problems caused by the condition of their mouth? This seems to be suggested by Joyce's comment about the connection between her mouth and quality of life: "I suppose in a way. Because when [her jaw] gets sore and when it gets too tense I just have to give up and go [remove her denture].  39  L E V E L OF SATISFACTION WITH M O U T H H E A L T H  The participants view of the health of their mouth and their expectations regarding the level of health that can be achieved are also significant factors in the connection between oral health and quality of life.  View of Existing Oral Conditions The dimensions of this category include an individual's personal assessment of mouth health and satisfaction with teeth and/or prostheses.  Satisfaction with Teeth and Prostheses Individuals who were quite definite in telling me that they did not make a connection between the health of their mouth and life quality were also satisfied with their teeth or prostheses. To finish a quotation from Murray, given earlier, when replying to my direct question about the connection between the condition of his mouth and quality of life: "Not to me because I have no problems with my mouth." During our conversation Murray told me he was quite happy with his dentist and the condition of his mouth. Mike, who has been to the dentist approximately five times in his life described his teeth as: "Not giving me any trouble." He has "no troubles whatsoever . . . can [eat] anything I want." Mary did not make a connection between oral health and quality of life, but saw the potential for a connection if her mouth was not in good shape: " . . . I hadn't thought about it because they're working fine. If they weren't then I would be."  40  This comment reflects a viewpoint that oral health could detract from an individual's quality of life if there was something wrong. A mouth condition viewed as a problem could elevate the importance of oral health to quality of life. I was not particularly surprised by these comments since Murray, Mike and Mary have natural teeth. I held the assumption that individuals with dentures would have a poorer level of function, particularly with respect to eating, and would be more likely to make a link between oral health and quality of life. However, Joe, who has a complete upper denture and lower partial also described himself as not having any trouble and able to eat anything. Recall that Joe supposed the connection between the health of his mouth and his quality of life was " . . . that my teeth aren't bothering me." It would seem that there is potential for Joe's mouth condition to adversely affect his quality of life if its health or level of function changes. Marilyn, who has a partial denture and did not make any connection between quality of life and her teeth at all, told me: "I'm fortunate because what's in my mouth is the best that could be put there." If Marilyn's fortune changed this could create a connection between her teeth and quality of life. However, the question remains as to how much her condition would need to deteriorate before she viewed her mouth differently than she does now. Marilyn's comments are closely tied with another dimension of this category—an individual's personal assessment of the health of their mouth.  Personal Assessment of Mouth Health Lydia has some lingering impacts of her mandibular augmentation. She has some numbness in her chin that causes her to sometimes "miss her mouth" while she is eating. She also talked about concerns regarding how much longer the graft will last, that is, concern as to whether the procedure will eventually fail. Yet she has been quoted as saying there are not many foods she cannot cope with and when I asked how she would describe the condition of her mouth she said, "I think it's healthy." She saw oral health as contributing to quality of life when she said,  41  " . . . sure it has a bearing because I can eat." She may have to peel and slice some foods but she views her mouth as healthy and she can eat. Bill who also saw the connection between oral health and quality of life in terms of a lack of problems. He described some concern about his bite and what he called "chipping " of his front teeth but when he described his mouth said: "I've had I guess, reasonable teeth . . . I've still got most of them . . . I feel as if I'm more or less doing satisfactory. I'm not worried about anything." Gerry and Tom did not make strong connections between oral health and quality of life. Gerry thinks his teeth "must be pretty good" and Tom feels "I'm fairly well off with my teeth at the moment." Once again, changes in these assessments could create a link between the health of their mouth and their quality of life.  Expectations Regarding Mouth Conditions Linked with participants' views of their existing oral conditions are their expectations regarding the health or function of their mouth. When participants gave me an assessment of the condition of their mouth they often made comments reflecting the dimensions of this category: positive comparison of self with others; a view of their mouth condition as related to age and acceptance of a condition even though it,may not be ideal to a dental professional.  Positive Comparison of Self With Others When telling me about some sensitivity caused by gum recession Bill said: " . . . of course I'm seventy so I guess I'm in pretty fair shape compared to some people that have a complete set of false teeth." Others also consider their mouth condition favorably compared with their peers: "At sixty-seven years of age [his age] you know an awful lot people haven't got their own teeth." (Murray) "I'm sixty-six and I reckon I've probably got a better set of teeth than average." (Tom)  42  Mouth Condition Viewed as Age Related Hilda, who has natural teeth, and I were having a conversation about the difficulties some people with dentures have when eating salad. She remarked that she has been told that she would be difficult to fit for a lower denture. She then said: "My life expectancy isn't all that great so I don't imagine I'm going to lose all my lower teeth in the meantime." Gwen said: " . . . I forget what it was I had done, I think it was this bridge, that I can't say Gilbert and Sullivan. You know, the rapid stuff. No, I can't do that anymore. But there again, what do we expect at this age?" When I asked Gwen to describe the condition of her mouth she said, "At seventy-six I don't think I have anything to grumble about." Mike had a comment in a similar vein when I asked whether he experienced any difficulty with talking related to his mouth or had any concerns about the appearance of his teeth, which he had described as black and dark: " . . . well when you get to be my age, you're not really fussy about them. You're only to have them for another. . . you know, you're not going to be around much longer. So I don't let it bother me at all."  Acceptance of Existing Conditions Whether or not an individual thinks that their mouth could be in better condition than it is could also influence whether or not they link oral health and quality of life. This is closely related to satisfaction. The people I talked with were accepting of their present state of oral health as evidenced by the following quotes. If this level of acceptance changed this could be a factor in moving oral health into the realm of quality of life.  43  When I probed Fern as to whether the loss of teeth had affected her quality of life she told me: "It isn't something that I dwell on, it's something that I accept, and . . . I don't sit around moaning about it. Never had time." When I asked whether the loss of teeth had affected her appearance she replied: "Just this receding cheek here . . . yes it has . . . I think I'll live with that." Joyce has complete dentures and described impacts on eating and appearance. She commented toward the end of our conversation: "But I'm not unhappy with [the dentures]. They don't fit well. They never will. But I'm still far better off with these than I ever was with my own teeth." Marilyn was talking about food getting under her partial denture when she added: "I can understand why [the dentist] doesn't want to tighten anymore. And that's the way it is, and that's okay."  P A R A L L E L S WITH G E N E R A L H E A L T H  The themes identified as relating to oral health and it's connection with quality of life were also discussed by some participants in relation to their general health. Hilda described how she is coping with a back problem that reduces her level of activity: "I feel I have a good quality of life you know. I feel I'm living very comfortably and my health is reasonably good. I have a little trouble walking any great distance because my back aches. But I'm seriously considering getting one of those . . . like a shopping cart. . . I need my own personal collapsible supermarket shopping cart and then I could walk. I could be more active. . . " Back problems have also led to an adjustment in Fern's activities: "Well I've got a few back problems now but it's not going to stop me particularly. It's not going to keep me home. I have to wear a brace now . . . As Iwas saying with gardening and things like I was doing before, outside activities, you just try and find a another substitute for it."  44  When Hilda and Fern no longer consider themselves as coping with these conditions will their assessment of their quality of life change? Gwen described her quality of life as very good but mentioned how age has affected her activities: " . . . you have to realize that you can't do the things you want to do. I have to do things very very slowly and if I get rushed at all I start to shake. But these are age related."  45  CHAPTER 5 DISCUSSION  THEORETICAL IMPLICATIONS  The literature on this topic (Chapter Two) identifies the lack of clear conceptualizations of quality of life in oral health related quality of life research. Locker's conceptual framework of the impact of oral disorders (Figure 1) is the most thoughtful work in this respect published to date (1992). He discusses the nature of the intervening variables in his model by identifying "social and personal resources, the social and cultural context within which an individual lives and aspects of the physical environment" (ibid,p. 111) as possible variables influencing the relationships between the key concepts depicted in the model. The themes emerging from the research presented in my thesis, an older adults' view of quality of life along with individual levels of satisfaction with oral health and ability to cope with existing mouth conditions, could be considered as some of the intervening variables in Locker's framework. However, the link between Locker's framework and quality of life is not clear. This lack of clarity is suggested in some of the early work done to develop suitable measures for each construct of the framework. In a report of this work, Locker wrote: " . . . the oldest age group had relatively poorer oral health than the youngest age group when judged in terms of clinical and functional indicators and they were more likely to report one or more social or psychological impacts. However, they were less likely to worry about their oral health and no more likely to be dissatisfied. Age related expectations and attitudes regarding the quality of life may explain this discrepancy and should be explored further." (1988, p. 123)  46  A model depicting quality of life and oral health related quality of life (Figure 2), was proposed at a conference of the American Association for Dental Research during presentation of a paper on oral health status and quality of life (Kressin et.al. 1995).  Figure 2 A Model of Quality of Life. Health Related Quality of Life. Oral Health Related Quality of Life and Clinical Oral Health Status (Kressin et.al.. 19951  The paper described a study of individuals, with a mean age of sixty-two years, in which measurement of oral health status included: the clinical indicators of number of teeth, dentition and denture status, coronal caries, restored tooth surfaces, periodontal pocket depth and tooth mobility; as well as participant assessments of the impact of dry mouth, tender or bleeding gums and oral pain on daily functioning. These impacts were defined as oral health related quality of life and included impacts on work, hobbies, social activities, conversations, eating and swallowing. The study concluded that some measures of oral health status have more impact on  47  or relevance to a patient's assessment of the impact of oral health on their quality of life than others (ibid). The other components of the model, health related quality of life and quality of life were not described. The model in Figure 2 presents health as a large component of quality of life and oral health as a component of overall health. The concept of health upon which the model is based is not described, but certainly physical health and oral health did not emerge as prominently in my research as the model suggests. In social gerontology, Hughes has proposed a conceptual model of quality of life (Figure 3).  Figure 3 A Conceptual Model of Quality of Life (Hughes, 1990)  PERSONAL AUTONOMY choice, decision making, control, privacy  CULTURAL FACTORS age, gender, class, race religion  EXPRESSED SATISFACTION life satisfaction, affect balance, psychological well-being, positive selfimage, consumer views  QUALITY OF LIFE  SOCIAL INTEGRATION social contacts, family contacts, social roles, citizenship  PURPOSEFUL ACTIVITY activities of daily living, recreation, work, interests  PHYSICAL AND MENTAL WELL-BEING physical health, handicap, functional abilities, dependency  SOCIO-ECONOMIC STATUS income, former occupation, material status, housing, standard of living, nutrition  QUALITY OF ENVIRONMENT wannth, comfort, security, personal space, decor, amenities, routine and rules  48  Hughes states that the model: " . . . illustrates the view that quality of life is comprised of a range of constituent elements, each of which is a sub-system of related factors, and all of which are related directly or indirectly to one another through the network." (1990, p. 54)  Along with queries regarding the impacts of the mouth on eating, speech and socializing, the research I am reporting also explored the concept of quality of life and therefore allows for a proposed model describing quality of life in the context of oral health. The fact that the findings are generated from the comments of older adults themselves gives the model credibility.  Figure 4 A Model Describing Quality of Life in the Context of Oral Health  Importance of Being Able - physical health - outlook on life  Relationships with Others - family - friends - spouse  - attitude  Importance of Being Happy - enjoyment - happiness  financial comfort  - contentment - satisfaction PERSONAL VIEW OF Q U A L I T Y OF, LIFE  Importance of Doing - activities  Importance of Autonomy  - hobbies  -indpendence - choice  - interests - ability to adapt  49  My findings (Figure 4) support the concept of quality of life as proposed by Hughes (Figure 3). Hughes' model includes purposeful activity and physical and mental well-being, the participants in my research talked about the "Importance of Doing" and "The Importance of Being Able." Social integration, as utilized by Hughes, is similar to "Relationships with Others" as discussed by the participants in my research. Autonomy figures in both models, and while Hughes uses expressed satisfaction, the people I talked with spoke of the "Importance of Being Happy." My research indicates that the Hughes model of quality of life fits into a discussion of quality of life in the context of oral health. The socio-economic status, quality of environment and cultural factors in her model require further exploration.  FUTURE R E S E A R C H  The research presented here suggests that the ability to cope with existing mouth conditions and the level of satisfaction with the mouth will determine whether or not older adults include oral health in a sub-system impacting on their quality of life. This research also suggests that any relationship between oral health and quality of life is not static. An individual experiencing an acute dental episode may be more likely to include oral health in a consideration of quality of life than an individual without a dental complaint, as evidenced by the contrast in the following quotes from participants regarding the connection between their oral health and the quality of their lives: " . . . I hadn't thought about it because they're working fine. If they weren't then I would be." (Mary) "I suppose in a way. Because when [her jaw] gets sore and when it gets too tense I just have to give up and go [remove her denture]. . . . get out of sight and take my teeth out. . . . I don't go out or if somebody comes to the door I have to dive for them." (Joyce)  50  Mary's comments illustrate a person who recognizes the potential for her oral health to affect her quality of life but is satisfied with the present condition of her mouth. Joyce's comments illustrate the potential for oral health to affect relationships with others and ability to be as active as desired. Future research with individuals experiencing an acute dental episode such as an abscessed tooth or mandibular augmentation, as described by Lydia, is required to explore these ideas more completely. The way in which the relationship between oral health and quality of life is conceptualized by researchers is very important to future work in this area. Figure 2 closely resembles my own view at the beginning of this research. I was looking for a direct relationship between oral health and quality of life, and structured my questions accordingly. I asked participants about the relationship they saw between oral health and quality of life (APPENDIX A). I tried to explore oral health as a category of quality of life. This would place oral health at a level equivalent to the categories that emerged from the research, that is, the "Importance of Doing", the "Importance of Being Able", the "Importance of Autonomy", "Relationships with Others" and the "Importance of Being Happy." However, rather than emerging as a category of quality of life, oral health emerged as a potential dimension of the categories of quality of life. This may be a subtle distinction but it has an important impact on future lines of questioning. This research suggests that the question is not whether an individual has difficulty chewing, trouble pronouncing words or suffers from a toothache or a dry mouth but, rather, whether the condition of a person's mouth affects relationships with others and desire and ability to be active and to enjoy life. Exploring positive and negative responses to these questions will clarify questions for an instrument to measure the relationship between oral health and quality of life. Research conducted from this perspective could discover more variables mediating the relationship between oral health and quality of life, beyond the two that emerged in my research. This research was limited to independently living, well, Caucasian older adults, so as suggested by the Hughes model (1990) and in the literature, further research needs to include those who are less well and less active (Flanagan 1982; Pearlman and Uhlmann 1991) and who  51  come from other cultures (Bergner 1989; Fitzpatrick et.al. 1992; Zhan 1992) and other socioeconomic groups (Flanagan 1982; Pearlman and Uhlmann 1991; Schlettwein-Gsell 1992; Zhan 1992; Meeberg 1993). Research with different age groups is also required to investigate the nature of the categories of quality of life throughout a person's life (Schlettwein-Gsell 1992). Are the categories different for younger people than older people? Perhaps employment and financial comfort might figure more prominently in younger age groups. The relationship of oral health to the categories of quality of life in different age groups also requires study. In Chapter One I expressed my interest in establishing oral care programs in care facilities. Future research is needed to explore how facility administrators, nurses, physicians and care aides conceptualize quality of life and the relationship between oral health and quality of life. An understanding of their viewpoint could be a key to success in establishing oral care as an integral part of daily resident care.  CONCLUDING R E M A R K S  Researchers interested in studying oral health and its relationship to quality of life need to consider their approach to the concept. The findings of this research suggest that: 1.  Quality of life, as described by older adults, is composed of categories such as the Importance of Doing, the Importance of Being Able, the Importance of Autonomy, the Importance of Being Happy and Relationships with others.  2.  Oral health is not viewed by older adults on the same level as the categories described above. Rather, oral health has the potential to be considered as a dimension of some or all of the categories that make up quality of life.  3.  Whether or not oral health is considered a dimension of quality of life by older adults is influenced by their ability to cope with the conditions existing in their mouths or their level of satisfaction with their mouth conditions.  52 REFERENCES  Atchison, K.A., Dolan, T.A. (1990) Development of the geriatric oral health assessment index. Journal of Dental Education. 11:680-686. Bergner, M . (1989) Quality of life, health status and clinical research. Medical Care 27:S148157. Bergner, M , Bobbitt, R.A., Pollard, W.E., Martin, D.P., Gilson, B.S., Morris, J.R. (1976) The sickness impact profile: validation of a health status measure. Medical Care 14:57-67. Cohen, L . K . , Jago, J.D. (1976) Toward the formulation of sociodental indictors. 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Gerodontics 3:100-102. Yin, R.K. (1994) Case study research: Design and methods (2nd edition) Newbury Park, CA: Sage. Zhan, L . (1992) Quality of life: conceptual and measurement issues. Journal of Advanced Nursing 17:795-800.  56 APPENDIX A  QUESTION LIST Quality of Life I am interested in the phrase "Quality of Life". Thinking about your life how might you use that phrase? How would you describe your quality of life? How have you heard other people use the phrase? How have you heard other people describe their quality of life? Health as part of quality of life In reading a lot about quality of life I have come across some ideas for what might be considered part of quality of life. Because of my health care background, health is one of the areas that I find interesting. How would you describe your overall health right now? Can you give me an example of how health has affected your quality of life? Have you seen how health as affected the quality of life of anyone that you know? Is there another term or phrase to describe the effect of health on your life? (If necessary—for example some people say their health affects their well-being, have you heard this or would you say that?) Mouth and teeth as part of quality of life Because of my dental background I am particularly interested in your mouth and teeth. What connection do you make between your mouth and teeth and what we have been talking about? How would you describe the health of your mouth right now? How about in the past? Has the health of your mouth changed over the years? Once again, I have been reading about how some people relate their mouth to quality of life. I would like to go through some of the things that I have read and get your opinion or ask if you have had similar experiences. Some people say that pain from their teeth or mouth affects quality of life. Have you experienced mouth pain? Would you say that it affected your quality of life? Is their another way you would describe the effect of the experience? Would you say this experience could affect the quality of a person's life?  57  Some people say that the condition of their mouth has changed their meals both in what they can eat and how they need to prepare it. Have you had this experience? Would you say this affected your quality of life? How would you describe the effect of the experience? Would you say this experience could affect the quality of a person's life? Some people report that the condition of their mouth causes them to take a long time to eat and this keeps them from eating with others? Have you had this experience? Would you say this affected your quality of life? How would you describe the effect of the experience? Would you say this experience could affect the quality of a person's life? Some people report discomfort from a very dry mouth. Have you had this experience? Would you say this affected your quality of life? How would you describe the effect of the experience? Would you say this experience could affect the quality of a person's life? Some people say that their teeth or dentures cause difficulties with things like talking and singing. Would you say this experience could affect the quality of a person's life? Have you experienced this? Is there a question that I did not ask that you think 1 should have? What questions would you like to ask me? What issues do you think I should pay the most attention to? Thoughts not included in questions How do your surroundings play a part in your quality of life? What kind of activities fill your day? Are they important in your quality of life? What part does income and standard of living play in your quality of life? How about the ability to make choices and decisions? Can you describe your recent contact with people—did you go out or talk to anyone on the phone yesterday? How important are other people to your quality of life?  58 APPENDIX B  I N T E R V I E W G U I D E (April 1994) My first questions are simply some background information. Have you always lived in Vancouver? What kind of work did you do? What hobbies do you have? May I ask when you were born? Can you tell me about your past dental experiences? How would you describe the condition of your teeth and mouth? Why? Some people have told me that their mouth has affected their ability to eat. Have you experienced this? Some people have told me that their mouth has affected their appearance. Have you experienced this? Others have told me that their mouth has affected their ability to talk. Have you experienced this? Some have also told me that their mouth has affected their desire to socialize with others. Have you experienced this? Can you describe any ways that the health of your teeth and/or mouth has affected your overall health? When you hear the phrase "quality of life" what do you think of? What does that phrase mean to you? Is the phrase quality of life one that you use? If not, what would you use in its place? How would you describe your quality of life? Why? Has your quality of life changed over the years? How? Go back over things mentioned in the interview at this point and ask —What about has that affected your quality of life do you think? Do you have any questions you would like to ask me? Are there any questions you think I should have asked?  59 APPENDIX C  Dear (Recreation Centre Name) Member: I am a dental hygienist at the Simon Fraser Health Unit. I am currently working toward my Masters degree in Dental Science at the University of British Columbia. M y research is aimed at exploring the relationship between dental health and quality of life in older adults. I would appreciate it if you would consider participating in my research project. Your involvement would consist of an interview approximately one hour in length. During the interview I would like to ask you questions regarding your opinion about the health of your mouth. I am also very interested in your opinion about the phrase "quality of life." All of the information you share will be strictly confidential. The interview can be arranged at a time and place convenient for you. If you are interested in participating in the project or have any questions please complete the bottom of this letter and return it to (Centre Coordinator). If you have any questions please feel free to contact me at 465-8747. I am looking forward to calling you to arrange a date for an interview. Thank you.  Sincerely,  Lynn Guest, Dental Hygienist  Yes, I am interested in participating in a research project exploring the relationship between dental health and quality of life. Name: Telephone  60 APPENDIX D  TITLE:  The relationship between oral health and quality of life in older adults.  INVESTIGATOR:  J. Lynn Guest Dip DH, BHE  TELEPHONE:  465-8747  I have been informed that this is a study being conducted as part of a research project leading to publication of a graduate thesis in Dental Science at the University of British Columbia (U.B.C.). It consists of a detailed interview that will last one hour and take place at my convenience. I have been advised that the interview will be taped so that the investigator can analyze the discussion accurately from a typed transcript. I will have an opportunity to review and clarify the transcript and to assist the investigator in the interpretation. The purpose of the study is to explore the relationship between the mouth and quality of life in older adults. I will be asked questions regarding my opinion about the condition of my mouth and the quality of my life. Information gathered in the study will be kept in the strictest confidence at the University of British Columbia, and the results will not identify me directly. I have been told that I can refuse to participate in the study or any part of it without jeopardy to my future dental care. All the information I requested has been supplied to my satisfaction, and I know that I can contact the investigator or her graduate supervisor (Dr. D.C. Clark at 822-4324) for further information if I wish. I acknowledge a copy of this consent form. Signed: Date.  61 APPENDIX E  Dear Hello! Thank you for agreeing to review the Findings and Discussion sections of my paper. When you read the documents kindly consider the following questions:  Is the vignette portraying your dental experience accurate? (The pseudonym I chose for you was .)  Is there anything you would like to add? Is there anything you would like deleted?  Have I utilized quotes attributed to you appropriately?  Do you think my analysis and conclusions are fair? If not, how would you change them?  I have enclosed an envelope in which you may return your written comments to me. If you prefer, you may telephone me at the number listed below. If I do not receive anything from you by I will presume you are satisfied. Thank you again for your support in this research. Sincerely,  Lynn Guest (465-8747)  

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