ILLNESS IDENTITY IN ADULTS WITH TYPE 2 DIABETES: ILLNESS IDENTITY QUESTIONAIRE SCALE VALIDATION AND RELATIONSHIP WITH PSYCHOLOGICAL AND DIABETES RELATED FUN C TIONING by KAILE M. ROSS B.A., University of Notre Dame, 2007 M.A., University of Colorado Denver, 2015 A dissertation submitted to the Faculty of the Graduate School of the University of Colorado in partial fulfillment of the requirements for the degree of Doctor of Philosophy Clinical Health Psychology Program 2018
ii Â© 2018 KAILE M. ROSS ALL RIGHTS RESERVED
iii This thesis for the Doctor of Philosophy degree by Kaile M. Ross h as been approved for the Clinical Health Psychology Program by Jonathan Shaffer , Chair Kevin S. Masters, Advisor Shandra Brown Levey Barbara Walker Date: July 28 , 2018
iv Ross, Kaile M. (PhD, Clinical Health Psychology Program) Illness Identity in Adults with Type 2 Diabetes: Illness Identity Questionnaire Scale Validation and Relationship with Psychological and Diabetes related Functioning Thesis directed by Professor Kevin S. Masters ABSTRACT Introduction: Diabetes is a major public health concern affecting approximately 8% of the U . S . population. Management of type 2 diabetes is complex and m any patients struggle with treatment adherence Research literature suggest s that illness related identity may affect the patients psychological functioning and engage ment in disease self care behaviors. The Illness Identity Questi onnaire (IIQ) was developed to assess illness identity, but it has not yet been validated in adults with type 2 diabetes. The current study was to assess the psychometric valid ity of the IIQ in adults with type 2 diabetes and to determine how the IIQ relates to psychological and diabetes specific outcomes . Methods: A confirmatory factor analysis (CFA) was conducted with a nationwide sample of adult s , recruited online , with type 2 diabete s (N = 282) to assess structural validity of the scale . Structural equation modeling was used to determine how the IIQ dimensions are related to both psychological and diabetes related functioning. Additionally, a sample of primary care patient s (N = 61) w ere recruited to determine how the IIQ relates to psychological and diabetes specific outcomes in primary care patients . Results: The CFA indicated a clear four factor structure of the IIQ , consistent with prior literature . Additionally , the IIQ dimensions that represent better identity integration (i.e. , Acceptance and Enrichment) were generally associated with better psychological well being and
v better diabetes specific functioning . D imensions that represent poor identity integration (i.e. , Rejec tion and Engulfment) were generally associated with poor er psychological well being and poor er diabetes specific functioning. The f inding were consistent between the n ational survey sample and the primary care sample. Conclusions: The IIQ may be a useful to ol for understanding illness related identity in adults with type 2 diabetes and for understanding the role identity may play in an psychological wellbeing and disease self care . These findings indicate that integrating diabetes ntity may be an important yet overlooked aspe ct of adjusting to and managing type 2 diabetes. The form and content of this abstract are approved. I recommend its publication. Approved: Kevin S. Masters
vi DEDICATION This thesis is dedicated to my son , Oscar . Your bea utiful spirit brings joy, wonder, meaning, and perspective to my every day. I am so grateful that you came into th is world, forever changing my identity to that of a mother . Thank you for being with me through this dissertation journey .
vii ACKNOW LEDGEMENTS I would like to acknowledge the support of individuals, who have helped me during my dissertation process. To my friends and classmates, Lacey Clement, Tattiana Romo, Jo Vogeli, Megan McGugan, Jennalee Wooldridge, Jessica Kenny, and Stephanie Ho oker, thank you for lending emotional support throughout this journey. To my mentor and supervisor, Shandra Brown Levey, thank you for always encouraging me and being a strong female role model. To my PhD advisor, Kevin Masters, thank you for being a guidi ng force throughout my graduate career and always being an advocate for my success. To folks at the Eugene S. Farley, Jr. Health Policy Center at the University of Colorado, thank you for always celebrating my academic and personal achievements with me and providing support throughout the last few years of graduate training . To my husband, siblings, parents, and in laws thank you fo r your love, support, and encouragement through my whole graduate career. Lastly, thank you to the individuals who participat ed in this project and completed the research questionnaire! This project was reviewed and approved by the Colorado Multiple Institutional Review Board.
viii TABLE OF CONTENTS CHAPTER I. Identity Theory ................................ ................................ ................................ ........ 2 Identity in Chronic Illness ................................ ................................ ........................ 3 Identity and Treatment Adherence ................................ ................................ ........... 4 Identity and Health Behaviors ................................ ................................ ................ 5 I llness Identity Questionnaire ................................ ................................ ................. 5 Purpose of Present Study ................................ ................................ ......................... 6 H ypotheses and Specific Aims ................................ ................................ ................ 7 II. METHOD ................................ ................................ ................................ .............. 9 Participants ................................ ................................ ................................ ............. 9 Study Design ................................ ................................ ................................ ........ 11 Demographic and Medical Information ................................ ................................ 11 Measures ................................ ................................ ................................ ............... 12 Statistical Analyses ................................ ................................ ............................... 14 III . RESULTS ................................ ................................ ................................ ............. 19 National Survey Sample ................................ ................................ ....................... 19 Primary Care Sample ................................ ................................ ............................ 26 IV. DISCUSSION ................................ ................................ ................................ ....... 30 Aim 1: Factorial Validity and R eliability of the IIQ ................................ .............. 30 Aim 2: Associations with Demographic and Clinical C haracteristics .................. 32 Aim 3: Associ ations with Psychological and Diabetes specific F unctioning ....... 34
ix Aim 4: Assessment of Associations with Functioning in Primary Care S ample .. 35 Clinical Implications ................................ ................................ .............................. 36 Limitations and Suggestions for Future R esearch ................................ ................. 38 Conclusions ................................ ................................ ................................ ........... 38 REFERENCES ................................ ................................ ................................ ................. 40 APPENDIX ................................ ................................ ................................ ....................... 45
x LIST OF TABLES TABLE 1. Participant c haracteristics ................................ ................................ ..................... 20 2. Means and standard deviations for the IIQ and outcome m easures ...................... 2 1 3. Factor loading for IIQ i tems ................................ ................................ ................. 2 2 4. Pearson c o rrelations between IIQ dimensions and continuous characteristics ..... 2 3 5 . Primary care patient c haracteristics ................................ ................................ ...... 28 6. Linear regression results of IIQ dimensions p redict ing outcome v ariables .......... 29
xi LIST OF FIGURES FIGURE 1. Factor s tructure of the IIQ ................................ ................................ .................... 1 5 2. SEM linking IIQ d imensions to psychosocial and d i abetes related o utcomes .... 2 6
xii LIST OF ABBREVIATIONS ACT Acceptance and Commitment Therapy ANOVA Analysis of Variance BMI Body Mass Index CFA Confirmatory Factor Analyses CFI Comparative Fit Index DDS Diabetes Distress Scale HbA1c Hemoglobin A1c IIQ Illness Identity Questionnaire PHQ Patient Health Questionnaire RMSEA Root Mean Square Error of Approximation SCQ Self administered Comorbities Questionnaire SDSCA Diabetes Self Care Activities SEM Structural Equation Modeling SRMR Standardized Root Mean Square SWLS Satisfaction with Life Scale WHO World Health Organization
1 CHAPTER I BACKGROUND Diabetes is one of the major causes of early illness and death worldwide and it was the seventh leading cause of death in the United States (U.S.) in 2010 (Centers for Disease Control and Prevention, 2014). Type 2 diabetes affects approximately 8 percent of the U.S. population, with as many as 25 to 40 percent of those with diabetes undiagnosed (American Diabetes Association, 2016; Cowie et al., 2009) . Type 2 diabetes is an incurable , c hronic disease which may caus e complications such as high blood pressure, heart disease, stroke, limb amputatio n, retinopathy, and neuropathy as well as decreased quality of life associated with diabetes related complication s (Wexler et al., 2006). T ype 2 diabetes can be well managed and its consequences possibly avoided or delayed with diet, physical activity, medication and regular screening and treatment for complications ( WHO, 2017 ) . Patients with diabetes, who do well with disease self management compared to those who do not, often demonstrate better clinical outcomes (Lorig & Holman, 2003). Yet, many p atients with diabetes report difficulties following prescribed diabetes treatment recommendations . One study found self reported rat es (which are likely an overestimate of objective rates) of diabetes treatment adherence at 78% for medication, 64% for self monitoring blood glucose, 37% for diet, and 35% for exercise (Peyrot et al., 2005) . It is critical to address p oor treatment adhere nce because it predicts higher rates of depression, worse physical health, increased hospitalization and increased mortality (Krousel Wood & Frohlich, 2010; Osterberg & Blaschke, 2005) . When trying to understand adherence or non adherence to diabetes medi cal recommendations, it is important to take the perspective of the patient. For many individuals,
2 diabetes is not diagnosed until people are 40, 50, or 60 years of age ( American Diabetes Association, 2016 ) . Diagnosed individuals have likely established decades long habits related to diet, physical activity (or inactivity), and medical check ups. A diagnosis of diabetes may induce expectancy, threat of painful and disabling complications, and the need for major changes in lifestyle to comply with medical recommendations (Rollins, 1992) . Additionally, individual s may have perceived themselves as relatively healthy prior to the diagnosis, but aft er the diagnosis may have to change their self perception to one of having a chronic illness or being a All these changes may be very difficult for a person to adjust to; however, given the critical importance of self care for individuals with type 2 diabetes, it is important to understand the psychological factors that promote engagement in these behaviors . Identity Theory One potentially important psychological theoretical framework that has been la rgely neglected in the diabetes self care literature is identity theory ( Stet s & Burke, 2000 ; Stryker & Burke, 2000 ). Identity is suggested to be a key component of motivation and behavior ( Rise, Sheeran, & Hukkelberg, 2010 ) . According to identity theory , identity consists of characteristics and self relevant meanings people ascribe to themselves in order to categorize themselves in they act in accordance with their sel f identity ( Stets & Burke, 2000 ). For example, some individuals may find that having a diagnosis of diabetes is not consis tent with their self view ; therefore, these individuals are not likely to categorize themselves (i.e. rejecting the diagnosis and the required self care behaviors). Whereas, other individuals may simply accept that diabetes is a
3 part of who they are and accept that they need to do things differ ently in order to maintain their health. It is likely that these two groups o f individuals will vary significantly in their ability to adhere to a diabetes self care regimen. Identity may be a particularly important constru ct to target for improving diabetes self care because it is a fluid rather than fixed co nstruct . Due to its f luid nature, identity may be responsive to interventions . Identi t y theory postulates that identity ( or identity formation) reflects a series of ongoing processes between the individual and the social environment responsible for the adoption of values and r oles . Identity in Chronic Illness S ome work has been done to examine identity in the context of chronic illness ; however, t he majority of the research examining identity in the context of chronic illness has be en qualitative. Various qu alitative studies describe the identity shift that patients experience after being diagnosed with a chronic illness such as fibromyalgia (Rodham, Rance, & Blake, 2010), heart failure ( Welstand, Carson, & Rutherford, 2009 ), asthma (Adams, Pill, & Jones, 1997), and rheumatoi d arthritis (Lempp, Scott, & Kingsley, 2006) . One such study conducted semi structured interviews with patients (N=21) with moderate to severe heart failure , finding that patients develop an identity as a patient with heart failure (Stull et al., 1999). Furthermore, the authors found evidence for 5 distinct phases of the illness identity development process: a crisis adjustment to life with the condition, and th eir decision to get on with life. Another qualitative study by Thornhill et al. (2008) discovered that many patients had difficulty coming to terms with their chronic illness diagnosis, particularly as they viewed themselves as previously healthy. Some pat ients made a distinction between their view of their identity and their circumstances
4 , I just believe my circumstances have change d (Thornhill et al., 2008 p. 164). T he qualitative literature has documented that exp eriencing a change in identity post diagnosis is a widespread phenomenon; however , not all patients undergo identity change . Although some patients may eventually come to accept their diagnosis as part of their identity (Stull et al., 1999), others may not integrate the diagnosis into their identity (Thornhill et al., 2008). As mentioned previously, this difference in post diagnosis identity may play a significant role in a prescribed medical regimen. Identit y and Treatment Adherence A few qualitative studies have explicitly explored the potential connection between identity and treatment adherence. One such study by Scotto (2005) investigated the connection between identity and adherence in patients with heart failure via semi structured interviews. The author found that adherence came about only after the patients accepted their diagnosis and had a subsequent change in their identity. Another qualitative study examined patients with asthma (N=30) and foun d that patients could be categoriz ed into two identity groups the asthma asthma (Adams, Pill, & Jones, 1997). This study found that these groups differed drastically in pattern of preventive medication use , with the deniers being non adherent. The authors explained medication was synonymo 1997 p . 194) . I n other words, to be treatment adherent , o ne would have to accept having a chronic condition as part of oneself . D enial of the disease may be conceptualized as the opposite One study specifically examined denial of disease in 160 patients with type 2 di abetes in Mexico (Garay Sevilla, Malacara, Guitierrez Roa, &
5 Gonzalez, 1999) . The authors found that not only was disease denial present in patient s with type 2 diabetes, it also increased with time during the first 5 years of having a diabetes diagnosis . Additionally, the authors found that illness denial was associated with poor metabolic control (as measured by HbA 1c ), but was not associated with knowledge of diabetes, social support , or perceived stress. Identity and Health Behaviors Whereas the identity in chronic illness literature has primarily been qualitative, there has been significant quantitative work examining the link between identity and health behaviors. The relationship between exercise identity and exercise behavior has been studied and an association between exercise identity and self reported minutes of weekly exercise, number of weeks of exercise participation, perceived exertion during exer cise, muscular enduranc e, percentage of body fat, and fitness levels has been established (A nderson & Cychosz, 1995; And erson, Cychosz, & Franke, 1998). Similarly, other studies have explored the identity. A study in adults (N = 101) found that self reported hea lthy eater id entity predicted subsequent (2 weeks later) self report of higher fruit and vegetable intake and lower intake of foods with poor nutritional value when controlling for nutritional knowledge (Strachan & Brawley, 2009 ) . Given the evidence linking identity to engagement in physical activity and healthy eating, two behaviors recommended for diabetes self care, examining the relationship between identity and diabetes self care behaviors is a logical next step for furthering the science of diabetes self care. Illness Identity Questionnaire One study h as begun to look a t how identity relates to diabetes self care and quality of life. Oris and colleagues (2016) developed a questionnaire , the Illness Identity Questionnaire (IIQ), to assess illness identity in adolescents and young adults with type 1 diabetes . They set out
6 to develop a scale that would assess both successful integration and lack of integration of the -acceptance (i.e. accepting diabetes as part of oneself) and enrichment (i.e . diabetes has had some positive effect s on oneself, similar to the concept of post traumatic growth or benefit finding ). Lack of integration was also measured by two domains rejection (i.e. degree to which the diabetes is seen as unacceptable or a threa t to the self) and engulfment ( i.e., feeling that diabetes is In a sample of 574 adolescents and young adults (14 25 years of age) with type 1 diabetes, the authors found that various aspects of identity were sig nificantly related to diabetes management and psychological functioning. Rejection was related to worse treatment adherence and higher HbA1c. Engulfment was related to greater depression, lower quality of life, and more diabetes related problems. Acceptanc e and enrichment were related to less depression and greater quality of life and acceptance was related to better treatment adherence (Oris et al., 2016 ; see the Appendix for scale items ) . Similar relationships between illness identity dimensions and psychological and diabetes related functioning may be see n in adults with type 2 diabetes. However, the IIQ has yet to be administered to adults with type 2 diabetes and thus evidence for the validity of the scale needs to be assessed in patients with type 2 diabetes in order to further understand the role that identity plays in facilitating or hampering engagement in diabetes related self care behaviors. Purpose of the Present S tudy The primary purpose of the current study was to examine the psychometric properties of the IIQ in a broad, U.S. based sample of individuals with type 2 diabetes. Aims 1 3 and hypotheses 1 3 relate to this primary purpose . The secondary purpose of the current study was to
7 examine how the four IIQ dimensions are related to other psychol ogical and diabetes related measurements in a sample of primary care patients. Aim 4 and hypothesis 4 related to this secondary purpose. Hypotheses and Specific A ims The following are the specific aims and hypotheses of the current study. Aim 1. Ass ess the factorial validity and reliability of the IIQ in a U.S. based , nationwide sample of adults with type 2 diabetes. Hypothesis 1. A fou r factor model of A cceptance, E nrichment, R ejection, and E ngulfment will provide adequate fit for the IIQ and good internal consistency 0 .80) within the four dimensions/subscales . Aim 2. Explore how IIQ dimension scores may be associated with or vary by demographic (e.g., sex, age, ethnicity) and clinical parameters (e.g., diabetes duration, diabetes management/ medication regimen, and self reported health ). Hypothesis 2 . IIQ scores will not differ significantly by demographic or clinical characteristics . Aim 3. Investigate associations between dimensions of the IIQ and psychological (depression symptoms and life satisfaction ) and diabetes speci fic factors (diabetes distress and diabetes self care ) to assess for IIQ criterion validity . Hypothesis 3. Associations between dimensions of the IIQ and psychological and diabetes specific factor s will provide support for criterion validly of the scale for adult s with type 2 diabetes. Speci fically, the IIQ dimensions of A cceptance and E nrichment will be associated with greater psychological functioning ( i.e. less depression and better life satisfaction ) and better diabetes related functionin g (i.e. less diabetes distress and greater diabetes self care ) .
8 Conversely, the IIQ dimensions of R ejection and E ngulfment will be associated with worse psychological and diabetes related functioning. A im 4. In the sample of primary care patients with type 2 diabetes, investigate associations between dimensions of the IIQ and psychological (depression symptoms and life satisfaction ) and diabetes related measurements (diabetes distress, diabetes self care , and HbA1c). Hypothesis 4. In a primary care population, associations between dimensions of the IIQ and psychological and diabetes related measurements will demonstrate that greater A cceptance and E nrichment will be related to better psychological functio n and healthier diabetes related measurements, whereas greater E ngulfment and R ejection will be related to poorer psychological function and poor er diabetes related functioning.
9 CHAPTER II METHOD Participants For this study, two separate samples of participants were recruited. National survey sample. For the primary analyses and IIQ validation, a sample of participants were recruited through an online survey service, Qualtrics. For this recruitment, the goal w as to recruit a U.S. based , nationwide sample of i ndividuals (N = 27 with type 2 diabetes. To be e ligible for participat ion , individuals had to : 1) have a diagnosis of type 2 diabetes, 2 ) be 18 89 years of a ge, 3 ) not be currently pregnant , and 3 ) have no significant cognitive impairments . Participants needed to be able to read and understand English. Qualtrics contacted individuals in their pool of individuals who have agreed to be contacted regarding parti cipation in survey completion and research. These individuals were contacted via email to determine if they were eligible to participate and to determine if they were interested in completing the survey online. Individuals were paid between $ 2 5 per survey completion . Two quality checks were built into the online survey in order to promote quality r esponses from survey participants . The first quality check was based on median time for survey completio n; this was calculated from the completion time of the first 30 respondents. Individuals, whose total time for survey completion was less than 1/3 of the median response time, were ineligible for inclusion in the final study dataset as these individuals likely rushed through the survey and provided poor quality responses. The second quality check was a quality check question built into the last set of survey questions. Individuals were prompted to select a
10 par ticular question response for quality assurance purposes . I ndividuals, who failed to provide the correct response were ineligible for inclusion in the final data set. The protocol for recruitment of survey respondents via Qualtrics was reviewed by the Co lorado Multiple Institutions Review Board . The board determined that the project met c riteria for exempt status and therefore did not require approval. Primary Care Sample. A second sample of participants was recruited from an urban , academic affiliated pr imary care practice in Denver , Colorado . To be e ligible for participation, patients needed to : 1) be 18 years of age or older, 2) have an electronic medical record documented diagnosis of type 2 diabetes, 3) have had a visit at the primary care practice wi thin the prior year , and 4) have no cognitive impairments, such as dementia. Participants needed to be able to read and understand English. The primary care sample was recruited by a variety of methods. The primary recruitment approach involved prescreenin g of patients for study eligibility via the electronic medical record . The principle investigator for the study, who was also a health coach at the primary care practice, then contacted eligible patients by phone to assess interest in participating. Patien ts, who declined to participate were thanked for their time and no longer contacted regarding the study . Patients, who expressed an interest or who did not answer the phone (these patients were left a voicemail about the study) , were either mailed or email ed the research survey based on patient prefer ence and availability of access to email . Mailed surveys included a pre addressed, pre waiting room so that pati ents could complete the survey and turn it into the front desk staff if they were interested in participating. Lastly, clinic providers were informed about the study. Copies of the research survey were made available to the providers so that they co uld giv e
11 eligible patients the opportunity to complete the survey during their clinic visit or at home (and return the survey when completed) . All surveys that were completed in paper format were entered into the study database by two separate research personnel and the data were compared for consistency . I nconsistencies in data entry were cross checked with the original surveys for determining the accurate entry. P articipants were entered into a random drawing to win a gift card ($25 $100) to a local grocery st Th e study protocol for the primary care sample was reviewed and approved by the Colorado Multiple Institutions Review Board. Study Design The design of the study for both the online national survey sample and the pr imary care sample was observational and cross sectional. Participants complete d a one time, self report questionnaire. For the primary care sample, the principle investigator additionally extracted medical record . Th is project was supported by personal funds . Demographic and Medical Information Demographic information was collected via self report for all p articipants . Participants were asked to provide the following demographic information: age, date of birth, gender, race, ethnicity, marital status, sexual orientation, education, and household income. Participants were also asked to provide the following medical information: number of years since diabetes diagnosis, diabetes medication or management (i.e., indi cating all that apply -insulin injections and/or oral medication , oral medication, or other ), medical co morbidities , and family history of diabetes. The co morbidi ties scale utilized was the Self Administered Comorbidities Questionnaire (SCQ) ( Sangha, Stucki, Liang, Fossel, & Katz, 2003 ) .
12 For the primary care participants, t he following medical information was extracted from 1c lab results, diabetes medication regimen, body mass index (BMI) , and blood pressure. The most recent value was extracted for this information within a 6 month range (pre or post survey completion). Measures The following measures comprised the study questionnaire , which all participant s were asked to complete: the IIQ, the Diabetes Distress Scale, the revised Summary of Diabetes Self Care Activities, the Patient Health Questionnaire, and the Satisfaction with Life Scale. See Appendix A for the full measures. Illness i dentity . The IIQ is a recently developed 27 item measure that assesses four illness identity dimension s relative to diabetes : acceptance, enrichment, rejection, and engulfment (Oris et al., 2016 ; see Appendix A ). A confirmatory factor analysis of the IIQ was conducted with a sample of 575 adolescent s and young adults (14 24 years of age) with type 1 diabetes, which confirmed the 4 factor structure of the IIQ. The four dimensions demonstrated good reliability . 0.90 for en richment. The following is a sample item from each of the four illness identity M M B ecause of my Participants are asked to indicate how much they agree with each statement on a 5 point Likert type scale ranging from 1 (strongly disagree) to 5 (strongly agree).
13 Diabetes distress . The D iabetes Distress Scale (DDS) is a 17 item scale designed to assess diabetes related distress (Polonsky et a l ., 2005) . T his scale demonstrates good internal consistency ( = 0.93) in the literature and demonstrated good in ternal consistency in both a nation al survey sample ( = 0.94 ) and a primary care sample ( = 0.86 ) . The following is an example item on the DDS . Participants were asked to rate the degree to which each item is currently problematic for them on a 6 point Likert type scale, from 1 (no problem) to 6 (serious problem ). Item scores were averaged to a total score between 1 and 6, thus higher values indicate d greater distress. The DDS can be used as an overall measure of distres s or it can be divided into four specific distress subscales (i.e. Emotional Burden, Physician related Distress, Regimen related Distress, and Interpersonal Distress). For the purposes of this study, the total DDS score was used in order to provide an over all measure of distress and to be consistent with the Oris et al. (2016) study which used a similar overall measure of distress. Diabetes self care . The revised Summary of Diabetes Self Care Activities Measure (SDSCA) is a standard self report scale to as sess diabetes self management (Toobert, Hampson, & Glasgow, 2000) . Ten items assess the frequencies of specific self management activities during the previ ous week . Respondents mark the numbers of days (0 7) on which the indicated behaviors were performed. did you test your The ten item s are averaged to create a total score ranging from 0 to 7 with higher scores suggesting better self management . The SDSCA demonstrated acceptable reliability for both the online survey sample ( = 0.76) and the primary care sample ( = 0 . 65) .
14 Depression symptoms. The 8 item Patient Health Questionnaire ( PHQ 8 ) was used to assess symptoms of depression (Kroenke, Spitzer, & Williams, 2001). The PHQ 8 is the same scale as the PHQ 9 except the item assessing suicid al ideation is dropped. In a primary care sample, the PHQ 9 has strong internal consistency ( = 0.89) and strong test retest reliability (0.84; administered 48 hours apart). Respondents are asked how often during the last 2 weeks (nearly ev ery day). The PHQ 8 total scor e can range from 0 to 24 , with higher scores indicating greater severity of depression symptoms. The PHQ 8 demonstrated strong internal consistency for both the national survey sample ( = 0.91 ) and the primary care sample ( = 0.86 ). Life satisfaction . The Satisfaction With Life Scale (SWLS) was used to assess general satisfaction and quality of life (Diener, Emmons, Larsen, & Griffin, 1985). This 5 item scale has demonstrated good internal consistency (i.e. of 0.85) and is correlate d highly with other measures of subjective well being (Pavot & Diener, 1993) . Participants respond to point Likert type response scale ranging from 1 (strongly disagree) to 5 (strongl y agree). The SWLS demonstrated strong internal consistency for both the national survey sample ( = 0.92 ) and the primary care sample ( = 0.93 ). Statistical Analysis Prior to conduct ing the main analyses, all data w ere cleaned and descriptive statistics analyzed using IBM SPSS version 2 4 software ( IBM Corporation, 2015) . Means, standard deviations, and ranges of all variables were examined to understand the distribution of the individual measures. C ontinuous variables were checked for normal distribution s .
15 National survey sample . Aims 1 through 3 utilized data collected from the national online survey sample. Therefore, the below described analyses were conducted utilizing the online survey sample. Aim 1. The primary objective of the current study was to assess the validity of the factorial structure and reliability of the IIQ in a nationwide sample adult s with type 2 diabetes. The hypothesis states that a fou r factor model (see Figure 1) will provide adequate model fit for the IIQ and the four factors will demonstrate good internal consistency 0. 8 0). Figure 1 Factor structure of the IIQ A confirmatory factor analysis (CFA) was conducted to evaluate the model fit of the hypothesized four factor solution for the IIQ . CFA is a multivariate statistical technique used to verify the factor structure of a set of observed variables (i.e. in this case the observed variables are the participant responses to the IIQ items) . CFA allows the researcher to test the hypothesis that a r elationship between observed variables and their underlying latent constructs exists (Tabachnick & Fidell, 2013) . The CFA was conducted using Mplus utilizing a maximum likelihood estimation approach to allow for a robust estimation method in the event of missing
16 data or non normally distributed variables ( MuthÃ©n & MuthÃ©n , 2012) . To examine the model fit, 2 index (should be as small as possible), the root mean square error of approximation (RMSEA; should be less than 0.08), the comparative fit index (CFI ; should be greater than 0.90), and the standardized root mean square residual (SRMR; should be less than 0.09) were evaluated (Schreiber, Nora, Stage, Barlow, & King, 2006 ) . Model modification i ndices were generated in Mplus to assess for areas of high co variance within the model ( MuthÃ©n & MuthÃ©n , 2012) . The Mplus default of 10 was used for the modification index cut point. The modification indices were used to determine error correlations in the final CFA model. Internal consistency of the four factors wa s In regar ds to sample size f or CFAs , there are no strict rules for calculating power; parameter estimate (Schreiber et al., 2006). The IIQ is a 27 item scale (i.e. 27 parameters to estimate); therefore, 270 participants were needed for the CFA. To compensate for incomplete or poor quality study questionnaire completion ( determined based on poor performance on quality assessment controls ) an additiona l 12 participants were recruited by Qualtrics . Aim 2. The objective of aim 2 was to e xplore how IIQ dimension scores vary by various demographic (e.g., sex, age, ethnicity) and clinical parameters (e.g., diabetes duration, medication regimen , and co morbidities ). For continuous variables (i.e. age, diabetes duration, co morbidity score , etc.), this association was evaluated by calculating Pearson correla tion coefficients . A nalysis of variance ( ANOVA ) was used to test for mean differen ces for categorical or dichotomous variables (e.g., gender , ethnicity, race, education, income , and management/ medication type (insulin vs. non insulin medication management , vs. non medication management ) ) across the four IIQ dimensions . Given that this aim was exploratory,
17 no adjustments were made to p value significance criterion for multiple comparisons; rather, the p values were simply reported and interpreted with caution. Aim 3. The objective of aim 3 wa s to examine the criterion validity of the IIQ . Specifically, the aim wa s to i nvestigate associations between dimensions of the IIQ and psychological (depression symptoms and life satisfaction ) and diabetes specific factors ( diabetes distress and diabetes self care ). Causal modeling via structural eq uation modeling (SEM) was conducted to address this aim . SEM is a tatistical techniques that allow for assessing the relationship between one or more independent variables (continuous or discrete) and one or more dependent variables (conti nuous or discrete) (Tabachnick & Fidell, 2013, p. 681) . This analysis allowed for examining associations between dimensions of the IIQ and psychological and diabetes specific factors. Specifically, this SEM examined the association between the observed dimensions of the IIQ (acceptance, engulfment, enrichment, and rejection) and depression symptoms, life satisfaction, diabetes distress, and diabetes self care . The observed IIQ dimension scores were used in the SEM in order to be consistent with the stati stical approach used in the Oris et al. (2016) study. SEM was an appropriate approach for this ai m, particularly as this approach allow s exogenous factors and the endogenous factors to correlate amongst them selves . T he SEM approach allow s factors to be int er correlated within the model providing for more precise estimation of the relationship between variables . In terms of sample size, s imilar for SEM is 10 participants per parameter estimate (Schreiber et al., 2006). SEM, there were four exogenou s (predictor/independent) variables and four endogenous (predict ed /dependent) variables which meant that 16 paramete r estimates were generated for the model . Therefore, a sample size of 16 0 was needed to cond uct this analysis.
18 Primary care sample. The final and forth aim of this study utilized data collected from adults with type 2 diabetes at a primary care clinic. Aim 4. The objective of aim 4 wa s to investigate associations between dimensions of the IIQ a nd psychological (depression symptoms and life satisfaction ) and diabetes related m easurements (diabetes distress and diabetes self care, and HbA1c) . I ndividual linear regressions were calculated to assess the relationship between the dimensions of the IIQ and the outcomes of interest.
19 CHAPTER III RESULTS National Survey Sample Two hundred and eighty two respondents completed the survey and passed the quality assurance checks . Table 1 displays the d emographic and clinical characteristics of these participants. P articipants from the online national survey were 54 years of age on average, predominately female (65.6%), Non Hispanic (90.4%), and White (87.2%). Participants from 42 different states comple ted the survey between 8/5 /17 an d 8/10 /17. Most participants had completed at least some college (77.9%), were currently married (55.3%), were heterosexual (92.9%), and had a wide distribution of household incomes ranging from less than $10,000 to over $15 0,000 annually . In regards to health and diabetes characteristics, these participants reported having diabetes for an average of 9 years, with 28.8% taking insulin, 77% taking oral medication, and 11.7% taking no insulin/medication to treat diabetes. The m ajority of participants (87.2% ) reported having had an HbA1c measured within the past year and 66.3% reported having seen a physician at least twice within the past 6 months (i.e. consistent with the recommendation that individuals with diabetes have check ups once every 3 months). Many participants reported having immediate (59.2%) and extended (46. 4 %) family members with diabetes. Approximately 70% of participants reported their health to be good to excellent and 30% reported their health as fair to poor
20 Table 1. Participant Characteristics National Survey Sample (N = 282) Demographics N % Clinical Information N % Age (years) 54.14 ( M ) 15.21 ( SD ) Duration of diabetes (years) 9.07 (M) 7.64 (SD) Sex Diabetes Treatment Male 97 34.4 Insulin 80 28.8 Female 182 65.6 Oral medication 217 77.0 Ethnicity No insulin/medication 33 11.7 Hispanic 27 9.6 Other 7 2.5 Non Hispanic 255 90.4 Comorbidity Score 5.50 (M) 3.78 (SD) Race HbA1c within last year White 246 87.2 Yes 246 87.2 Black/African American 20 7.1 No 28 9.9 Asian/Asian American 11 3.9 Unsure 8 2.8 Native American 2 0.7 Medical visits Other 8 2.8 < 2 past 6 months 95 33.7 Education 187 66.3 < High School 1 0.4 Diabetes Family History High School or GED 61 21.6 Immediate family 167 59.2 Some College 125 44.3 Extended family 131 46.4 4 year College Degree 52 18.4 Spouse 25 8.9 Some to completed postgraduate degree 43 15.2 None 87 30.9 Income General Health <$10,000 6 2.1 Excellent 8 2.8 $10,000 to < $20,000 38 13.5 Very Good 54 19.1 $20,000 to < $30,000 32 11.3 Good 136 48.2 $30,000 to < $40,000 35 12.4 Fair 69 24.5 $40,000 to < $50,000 35 12.4 Poor 15 5.3 $50,000 to < $75,000 69 24.5 Depression Severity $75,000 to < $100,000 34 12.1 None 167 59.2 $100,000 to < $150,000 22 7.8 Mild 64 22.7 11 3.9 Moderate 27 9.6 Marital Status Moderate to severe 17 6.0 Single 61 21.6 Severe 7 2.5 Married 156 55.3 Domestic partnership 19 6.7 Separated 5 1.8 Divorced 27 9.6 Widowed 14 5.0 Sexual Orientation Heterosexual 262 92.9 Gay or Lesbian 15 5.3 Other 5 1.8 Means, standard deviations, and minimum and m aximum scores were computed for the four IIQ and outcome measures . The results are presented in table 2. Participants scored the lowest on the Engulfment dimension of the IIQ and highest on the Acceptance dimension. On
21 average, participants were moderately satisfied with their life, endorsed few depression symptoms, and enga ged in a variety self ca re behaviors 3 4 days per week . Table 2. Means and standard deviations for the IIQ and outcome measures Scale Minimum Maximum M SD IIQ Acceptance 1.00 5.00 3.70 0.68 IIQ Rejection 1.00 5.00 2.65 0.94 IIQ Enrichment 1.00 5.00 3.10 0.94 IIQ Engulfment 1.00 5.00 1.98 0.81 Life Satisfaction 1.00 7.00 4.08 1.56 Depression 0.00 24.00 5.07 5.50 Diabetes Distress 1.00 5.71 1.82 0.93 Self Care 0.00 6.70 3.60 1.49 Aim 1. The goal of aim 1 was to assess the reliability (i.e. internal consistency) and validity of the factorial structure and of the IIQ in a national sample of adults with type 2 diabetes. Internal consistency of the four domains of the IIQ was high as mea sured by Enrichment ( = 0.95), Rejection ( = 0.84), Acceptance ( = 0.82), and Engulfment ( = 0.92). These alpha levels support the hypothesis that the dimensions of the IIQ would demonstrate strong internal ( 0.80) reliability. The CFA results for the IIQ scale indicated that the hypothesi ze d four factor model (df = 318; 2 = 885.182, P = 0.000; RMSEA = 0.080; CFI = 0.887; SRMR = 0.068); however, the model fit was slightly improved when allowing for six error correlations between related item s within a single latent facto r (df = 312; 2 = 652.893, P = 0.000; RMSEA = 0.062; CFI = 0.932; SRMR = 0.065 ). In short, the CFA found support for the 4 factor structure IIQ when keeping the sub s cales consistent with how the scale was developed by Oris et al. (2016). Item loadings for the second model (i.e. with the six error correla tions) are presented in Table 3 .
22 Table 3 . Factor loading for IIQ items Item Factor loading * Rejection items 1. I refuse to see my diabetes as part of myself. 0.528 think about my diabetes. 0.738 3. I never talk to others about my diabetes. 0.703 4. I hate being talked to about my diabetes. 0.733 5. I just avoid thinking about my diabetes. 0.845 Acceptance items 6. My diabetes simply belongs to me as a person. 0.509 7. My diabetes is part of who I am. 0.583 8. I accept being a person with diabetes. 0.788 9. I am able to place my diabetes in my life. 0.944 10. I have a clear picture or understanding of my diabetes. 0.524 11. I have learned to accept the limitations imposed by my diabetes. 0.651 Engulfment items 12. My diabetes dominates my life. 0.795 13. My diabetes has a strong impact on how I see myself. 0.719 14. I am preoccupied with my diabetes. 0.790 15. My diabetes influences all my thoughts and feelings. 0.842 16. My diabetes completely consumes me. 0.803 17. It seems as if everything I do is influenced by my diabetes. 0.807 18. My diabetes prevents me from doing what I would really like to do. 0.701 19. My diabetes li mits me in many things that are important to me. 0.727 Enrichment items 20. Because of my diabetes, I have grown as a person. 0.826 21. Because of my diabetes, I know what I want out of life. 0.833 22. Because of my diabetes, I have become a stronger person. 0.829 23. Because of my diabetes, I realize what is really important in life. 0.914 24. Because of my diabetes, I have learned a lot about myself. 0.881 25. My diabetes has brought me closer to my friends and family. 0.729 26. Because of my diabetes, I have learned to work through problems and not just give up. 0.829 27. Because of my diabetes, I have learned to enjoy the moment more. 0.827 *All standardized factor loads were significant at the p < 0.001 level. Additionally, the CFA results provide information about the relationship between the four dimensions of the IIQ. The CFA demonstrated that the four dimensions had unique relationships with one another. Acceptance was significantly related to Rejection ( r = 0.46 , p < 0.001) a nd Enrich ment ( r = 0.27 , p < 0.001) , but only associated at a marginally significant level to Engulfment ( r = 0.12 , p = 0.071). Rejection ha d a significant nega tive association with Enrichment ( r = 0.27 , p < 0.001), but was not signif icantly associated with Engulfment. Engulfment was positively associated with Enrichment ( r = 0.18 , p = 0.003).
23 Aim 2. The objective of aim 2 was to explore how IIQ dimension scores vary by various demographic (e.g., sex, age, ethnicity) and clinical parameters (e.g., diabetes durat ion, medication regimen, and comorbidity score ). Pearson correlations were calculated to assess for associations between IIQ dimensions and continuous demographic and clinical variables (see Table 4 ). Acceptance was signific antly correlated with age and diabetes duration, such that higher acceptance was associated with older age and longer duration of diabetes. Acceptance was also significantly correlated with medical visit adherence (i.e. having had 2 or more visits with one duration of diabetes and medical visit adherence (i.e. 2 or more). Engulfment was associated with d uration of diabetes, self reported health , and comorbidity score , suc h that higher Engulfment was associated with a shorter duration of diabetes, worse self reported health , and a higher comorbidity score . Table 4 . Pearson correlations between IIQ dimensions and continuous characteristics Age Diabetes Duration Self Report Health + Comorbidity Medical Visit Adherence Acceptance .292** .205** .039 .058 .149* Rejection .308 .152* .039 .021 .152* Enrichment .085 .070 .073 .017 .116 Engulfment .107 .149* .241* .232** .068 Note: + lower scores indicate better health, * p < 0.05, ** p < 0.01, *** p < 0.001 One way ANOVA s were conducted on the additional demographic and clinical factors , including sex, ethnicity, race, education, diabetes treatment type (insulin vs. oral medications only), sexual orientation, and income to assess for differences in the IIQ dimensions (i.e. Acceptance, Rejection, Enrichment, E ngulfment). No significant differences emerged on the IIQ dimensions by income or sexual orientation. Differences on various IIQ scales were found for sex, ethnicity, race, education, and diabetes management (i.e. insulin vs. oral medication). Female survey respondents reported lower A cceptance scores than male respondents ( M = 3.61 ( SD = 0 .70) vs. M = 3.85 ( SD = 0 .60), F (1, 280) = 8.03, p = 0 .005). Differences were found for
24 ethnicity, with Hispanic respondents reporting higher scores on Rejection ( M = 2.99 ( SD = 1.16) v s. M = 2.61 ( SD = .91) , F (1, 208) = 3.92, p = .049) but also higher scores on Enrichment ( M = 3.45 ( SD = 0 .89) vs. M = 3.06 ( SD = 0. 93), F (1, 280) = 4.21, p = .041) when compared to Non Hispanics . A similar difference was found for race with C aucasian respondents reporting lower Enrichment scores than Non C aucasian respondents ( M = 3.04 ( SD = 0 .95) vs. M = 3. 45 ( SD = 0 .79), F (1, 280) = 6.80, p = 0.01). For education, Enrichment scores seemed to increase as respondents reported less education ( F (5, 276) = 2.78, p = 0 .018) . For example, individuals who had completed high school or their GED had a mean of 3.41 ( S D = 0.86) whereas individuals who completed some college ( M = 3.06 ( SD = 0.89)) or a 4 year college ( M = 3.06 ( SD = 1.09) had a lower mean . For diabetes treatment , respondents who s e diabetes was treated with insulin reported higher Enrichment scores (M = 3.40 (SD = 0 .77) vs. M = 2.99 (SD = 0 .97), F (1, 244) = 10.74, p = 0 .001) but also higher Engulfment scores (M = 2.18 (SD = 0 .98) vs. M = 1.92 (SD = 0 .73), F (1, 244) = 5.57, p = 0 .019) than respondents who se diabetes was treated with only oral medication . Aim 3. The objective of the analysis for aim 3 was to examine the criterion validity of the IIQ by evaluating the associations between dimensions of the IIQ and psychological (depression symptoms and life satisfaction ) and diabetes specific factors ( diabetes distress and diabetes self care) via SEM. The fit statistics for the model demonstrated good fit with the data ( df = 5, 2 = 506.566, P = 0.000; RMSEA = 0.000; CFI = 1.000; SRMR = 0.000). The SEM demons trated a variety of significant associations between the IIQ dimensions and psycho logical and diabetes self care measures (see Figure 2) , providing support to the hypothesis for aim 3 and indicating that the IIQ has strong criterion validity . The SEM demonstrated that Engulfment was significantly associated with greater depression, lower life satisfaction, and gre ater diabetes
25 distress but was not significantly associated with diabetes self care. Rejection was significantly associated with greater depr ession and diabetes distress and poor self care, but was not significantly associated with life satisfaction. Acceptance was significantly associating with less depression, greater life satisf action, and less diabetes distress but was not associated with d iabetes self care. Enrichment was significantly associated with less depression, greater life satisfaction, better self care, but was only marginally significant in association (i.e. p = 0.057) with less diabetes distress. The SEM also demonstrated signifi cant associations between all IIQ dimensions except for between Engulfment and Rejection and between Engulfment and Acceptance. Additionally, the SEM provided associations between all the psycho logical and diabetes related variables; all these variables si gnificantly correlated with one another at the p 0.001 level.
26 Figure 2 SEM linking IIQ dimensions to psychosocial and diabetes related outcomes Note: * p < 0.05, ** p < 0.01, *** p < 0.001 , numerical values on the left side of the figure are correlation coefficients and value on the right side are standardized coefficients . Primary Care S ample The d emographic and clinical characteristics of participants in the primary care sample ( N = 61) are presented in Table 5 . This sample was on average 58.84 years of age, predomin antly female (60.7%) , Non Hispanic (85.2%) , White (70.5%) , married (44.3%), and had completed at least some college (80.4%) . In term of diabetes, the participants had diabetes for an average of 13.05 year s ( SD = 12.39), with 40.9 % having insulin as part of their treatment regimen, 72.1 % having oral medications a s part of diabetes treatment , and 3.3 % having no insulin or oral medication for diabetes management. The average HbA1c was 7.76 ( SD = 1.96) , which is slightly above the recommended range for diabetes management (i.e. HbA1c of 7 or below typically indicates good
27 diabetes management). The average participant BMI was 34.57 , indicating that the sample was in the overweight to moderat ely obese range. Additionally, participant s reported multiple comorbid medical problems ( M = 8.75; SD = 4.58 ; i.e. based on comorbi di ty scores ) , an average of one trip to the emergency room in prior year, and only about half (55.7%) reported their health as good to excellent. The majority of parti cipants completed the survey online (N = 46, 75.4%) vs. completing the paper survey (N = 15, 24.6%). On the IIQ, participants scored the lowest on Engulfment ( M = 1.98, SD = 0.74), followed by Rejection ( M = 2.16, SD = 0.97), Enrichment ( M = 3.25, SD = 0.7 3), and Acceptance ( M = 3.74, SD = 0.62). Scores on the IIQ for this sample we re fairly consistent with those found in the n ational s urvey s ample.
28 Table 5 . Primary care participant characteristics Primary Care Sample (N = 61) Demographics N % Clinical Information N % Age (years) 58.84 (M) 13.22 (SD) Duration of diabetes (years) 13.05 (M) 12.39 (SD) Sex Male Female 24 27 39.3 60.7 Diabetes Treatment Insulin Oral medication 25 44 2 40.9 72.1 3.3 Ethnicity H ispanic Non Hispanic 9 52 14.8 85.2 No insulin/medication Comorbidity Score 8.75 (M) 4.58 (SD) HbA1c 7.76 ( M ) 1.96 ( SD ) Race White Black/African American Asian/Asian American Native American/ American Indian/Alaska Native Other 43 13 1 4 4 70.5 21.3 1.6 6.6 6.6 Body Mass Index (BMI) 34.57 ( M ) 7.12 ( SD ) Blood Pressure Systolic 122.85 ( M ) 11.03 ( SD ) Diastolic 72.97 ( M ) 10.44 ( SD ) # ER visits in past year 1.03 ( M ) 1.88 ( SD ) # hospitalizations in past year 0.43 ( M ) 0.85 ( SD ) Education < High School High School or GED Some College 4 year College Degree Some to complete d P ostgraduate Degree 4 8 25 9 15 6.6 13.1 41.0 14.8 24.6 Diabetes Family History Immediate family Extended family Spouse None 53 39 4 16 86.9 52.5 6.6 26.2 Income < $10,000 $10,000 to < $20,000 $20,000 to < $30,000 $30,000 to < $40,000 $40,000 to < $50,000 $50,000 to < $75,000 $75,000 to < $100,000 $100,000 to < $150,000 $150,000 7 6 8 9 0 9 7 6 3 11.5 9.8 13.1 14.8 0 14.8 11.5 9.8 4.9 General Health Excellent Very Good Good Fair Poor 1 13 20 20 7 1.6 21.3 32.8 32.8 11.5 Marital Status Single Married Domestic partnership Separated Divorced Widowed 15 27 2 3 7 7 24.6 44.3 3.3 4.9 11.5 11.5 Depression Severity None Mild Moderate Moderately Severe Severe 0 13 5 2 1 57.4 21.3 8.9 3.6 1.8 Sexual Orientation Heterosexual Gay or Lesbian Other 55 2 3 90.2 3.3 5.0 Aim 4. The objective of aim 4 was to investigate associations between each dimension of the IIQ and psychological (depression symptoms and life satisfaction ) and diabetes related measurements (diabetes distress, diabetes self care , and HbA1c) in a sample of primary care
29 patients with type 2 diabetes . U ncontrolled i ndividual linear regress ions were calculated to understand the relationship between each dimension of the I IQ and each outcome of int erest (see Table 6 ). In the linear regression results, Acceptance demonstrated a marginally significant association with diabetes distress ( = 0.243, p = 0.071), with greater A cceptance being related to lower distress. Higher R ejection was significantly associated with lower life satisfaction ( = 0.262, p = 0.051), higher diabetes distress ( = 0.261, p = 0.052), and more depression symptom s ( = 0.364, p = 0.006). Higher Enrichment was associated with better diabetes self care ( = 0.597, p = 0.000) and associated with higher HbA1c at a marginally significant level ( = 0.232, p = 0.080). Higher Engulfment was significantly associated with poor life satisfaction ( = 0.292, p = 0.029), greater diabetes distress ( = 0.366, p = 0.006), and higher HbA1c scores ( = 0.374, p = 0.004); Engulfment was also associated with more depression symptoms ( = 0.241, p = 0.073) and better diabetes self c are ( = 0.234, p = 0.085) at a marginally significant level. Table 6 . Linear regression results of IIQ dimensions predicting outcome variables Predictor Outcome Variable N Coefficients p value Unstandardized Standardized Acceptance Life Satisfaction 55 0.132 0.048 0.725 Diabetes Distress 55 0.275 0.243 0.071 Depression 55 0.981 0.124 0.364 Diabetes Self Care 54 0.117 0.061 0.656 HbA1c 57 0.393 0.121 0.367 Rejection Life Satisfaction 55 0.459 0.262 0.051 Diabetes Distress 55 0.189 0.261 0.052 Depression 55 1.847 0.364 0.006 Diabetes Self Care 54 0.209 0.176 0.199 HbA1c 57 0.230 0.106 0.429 Enrichment Life Satisfaction 55 0.035 0.015 0.913 Diabetes Distress 55 0.002 0.003 0.985 Depression 55 0.214 0.032 0.817 Diabetes Self Care 54 0.968 0.597 0.000 HbA1c 57 0.616 0.232 0.080 Engulfment Life Satisfaction 55 0.669 0.292 0.029 Diabetes Distress 55 0.346 0.366 0.006 Depression 55 1.604 0.241 0.073 Diabetes Self Care 54 0.370 0.234 0.085 HbA1c 57 0.998 0.374 0.004
30 CHAPTER IV DISCUSSION Illness identity may be a key construct for understanding how adults psychologically adjust to and manage type 2 diabetes after diagnos is . To date, illness identity has not been studied among individuals with type 2 diabetes and no measure s of illness identity have been psychometrically evaluated for use in this population. The current study address es this gap in the literature. In the current study, the IIQ, a new self report measure previously only tested in adolescents and young adults with type 1 diabetes, was assessed for structural and criterion validity in a nation wide sample of adults with type 2 diabetes. The CFA results found support for the four factor structure of the IIQ (i.e., Acceptance, Rejecti on , Enrichment, and Engulfment). As an indication of criterion validity, dimensions of the IIQ were found to be related to psychological and diabetes related functioning , not only in an online, nation wide sample of adults but also in a primary care based sam ple of adults. The validation results of the current study are similar to thos e reported in the article by Or is and colleagues (2016) which examined In brief , the resul ts of the current study demonstrate that the IIQ may be a useful measure for assessing illness identity in adults with type 2 diabetes. Furthermore , the IIQ may aid in understanding why certain adults struggle with the emotional and functional aspects o f m anaging type 2 diabetes whereas others succeed at adapting to and managing their diabetes. The findings from Aim 1: Factorial Validity and R eliability of the IIQ The psychometric a nalys i s of the IIQ (i.e. CFA, Cronbach , and correlations) demonstrated that the four illness identity dimensions are distinct but inter related constructs. All
31 items loaded well onto their proposed dimensions and internal consistency was strong for each dimens ion. The results indicate that the IIQ has strong psychometric properties when utilized in adults with type 2 diabetes. Previously, there had been no known psychometrically validate d measure of illness identity for i ndividuals with type 2 diabetes. The fin ding s from aim 1 are significant for diabetes research because the IIQ is now the first and only known psychometrically sound measure of illness identity for type 2 diabetes. Now that a measure has been established, future research can evaluate the role th at illness identity may play in type 2 diabetes management, health outcomes, and psychosocial function using this quantitative measure . Additionally, the results of aim 1 found that IIQ dimensions that were theorized to demonstrate integration of diabetes with identity (i.e., Acceptance and Enrichment ) were negatively associated , as expected, with one of the dimension s designed to measure lack of identity integration (i.e. Rejection). Yet, the other dimension that was designed to assess poor integ ration (i .e. Engulfment) was only associated at a marginally significant level with Acceptance, not significantly associated with Rejection , and positively associated with Enrichment . Oris et al. (2016) found that Engulfment and Enrichment were negatively finding suggests that E ngulfment may relate differently to the Enrichment in adults with type 2 diabetes than it does in younger individuals with type 1 diabetes. Age d ifferences between participants in the Oris et al. (2016) study and the current study (i.e. , 19 vs. 59 years of age) may help to explain differences in identity dynamics observed in the current study . O lder adult s tend to be holding co nflicting opinions in comparison to younger individuals (Williams &
32 Aaker, 2002) . When it comes to illness identity , this may mean that the older verses younger individuals with diabetes may be more comfortable acknowledging that they feel both overwhelmed by diabetes and that diabetes has enriched their life in some way . Another potential explanation may lie with the difference in disease management demands for type 1 and typ e 2 diabetes. Individuals with t ype 1 diabetes have greater demands pla ced on them for their diabetes management (e.g. administering insulin for each meal, carbohydrate counting for each meal, frequent finger sticks for testing blood glucose, testing urine for ketones, etc.) and these demands often start at a young er age (Str eisand & Monaghan, 2014) . The burden of caring for type 1 diabetes responsibilities, may lead to a level of being overwhelmed that precludes feeling enriched by betes. Regardless of the cause, the current study highlights that Enrichment and Engulfment IIQ dimensions may relate differently to one another in adolescents and young adults with type 1 diabetes than in adults with type 2 diabetes. Furthermore, the cur rent study findings demonstrate that adults who have integrated diabetes into their identity may still feel overwhelmed by their diabetes at times . Aim 2: Associations with Demographic and Clinical C haracteristics Differences in IIQ dimension scores were found by sex, ethnicity, race, education, diabetes management (i.e. insulin vs. oral medication), medical visit adherence, duration of diabetes, comorbidity scores, and self reported health. These observ ed differenc es are consistent with Identity Theory which postulates that identity is a fluid construct , the formation of which reflects an ongoing process between the individual and the social environment (Stets & Burke, 2000; Stryker & Burke, 2000). Based on this theory , illness identity may be shaped by
33 demographic, clinical, and individual factors as these factors are likely to influence how individuals perceive their illness and what it means to be a person with diabetes. Specifically , a im 2 found that f emale pa rticipants reported lower Acceptance than male negatively correlated with Rejection and positively correlated with Engulfment, indicating that individuals are at risk fo r different types of poor illness integration based on how long they have had diabetes . Notable differences were also found by ethnicity, race, and education . Hispanic participants reported higher Rejection , yet also reported higher Enrichment. Additionall y, Non Caucasians and participants with less education reported higher Enrichment scores. The aim 2 results suggest that ther e may be a strong cultural and socioeconomic component to illness integration, wherein minority participants and individuals with fewer years of education are more likely to endorse that they have benefited from the ir diagnosis in some way (e.g. , brought them closer to family, helped them understand what is important in life) . Literature examining benefit finding , a concept similar t o Enrichment, in patients with cancer has demonstrated similar results among minority and low socioeconomic status patients ( Kinsinger et al., 2006 ; Tomich & Helgeson, 2004 ). Work by Kinsinger et al. (2006) reported higher levels of benefit finding in non Caucasian men with prostate cancer. The authors noted that ethnic that components of ethnicity, such as re ligiosity and familialism, may accoun t for greater benefit finding in minority populations (Kinsinger et al., 2006, p 959) . Similarly, a s tudy by Tomich & Helgeson (2004) found that minority women with breast cancer reported higher levels of benefit finding in comparison to non minority wome n. The authors theorize that because minority women
34 Whatever the cause for greater Enrichment, this may be an impo rtant area for future study particularly because Hispanic and African American populations are disproportionately affected by type 2 diabetes (Spanakis & Hill Golden, 2013). Aim 2 also found that diabetes treatment type was related to illness integration. Participants, whose diabetes was being treated with insulin vs. only oral medications , reported higher Enrichment scores bu t also higher Engulfment scores . Given that this same pattern emerged for Hispanic participants and give n that Engulfment and Enrich ment dimensions were associated in the CFA and SEM , it is likely that Engulfment and Enrichm ent are not diametrically opposed constructs, but rather aspects of illness identity that an individual can experience in varying degrees. Additionally , individuals who feel overwhelmed by their diabetes may receive more support from family, friends, and h ealthcare providers a nd feel enriched in that regard. P revious research is consistent with this theory demonstrating that individuals with more severe chronic illn ess are more likely to report seeking emotional support as a coping strategy (Kossakowska & Zielazny, 2013). Aim 3: Assoc iations with Psychological and Diabetes specific F unctioning The four dimensions of the IIQ each demonstrated unique relationships with psychological and diabetes specific functioning. This finding is critica l for assessing the criterion validity of the IIQ. Criterion validity examines whether a test/measure can inf orm how a person is likely to perform on other important measures and outcomes . The IIQ demonstrated criterion validity because the SEM found that each dimension of the measure was significantly associated with measures of psychological and diabe tes specif ic functioning. Said another way, the results of the SEM demonstrated that the four IIQ dimensions may be able to provide important information about how a person is functioning from a psychological and diabetes specific
35 perspective. For example , if an ind ividual is high on Acceptance and Enrichment, it is likely that he/she is doing well emotionally as well as from a diabetes management standpoint. If an individual is high on Rejection and Engulfment, it is likely that he/she is doing poorly from an emotio nal and diabetes management standpoint . Aim 3 results are consistent with the prior work by Or is et al. (2016) as well as consistent psychological and diabetes spec ific outcomes . These finding provide a startin g point for future research exploring how illness identity may affect the experience and management of type 2 diabetes. The current study is the first known research study to quantitatively examine illness iden tity in type 2 diabetes. T he field of type 2 diabetes illness identity research is ripe for scientific inquiry and criterion validity results should be encouraging for researchers who wish to explo re the role of illness identity in diabetes. Aim 4: Assessm ent of Associations with Functioning in Primary Care S ample When the IIQ was used to assess psychological and diabetes specific functioning in a primary care sample similar results were found to those demonstrated in the national, online survey sample. In general, aim 4 found that higher Acceptance and Enrichment were linked to positive outcomes and higher Rejection and Engulfment related to poorer outcomes in primary care patients with type 2 diabetes . Assessing illness identity in medical patients with diabetes may provide important insight into how patients are doing from a chronic illness perspect ive. For example, scoring high on the Rejection dimension was associated with having greater diabetes distress, depression, symptoms, and poor life satisfact ion for the primary care patient. Knowing Rejection score may be an indicator to the medical team that the patient is not doing well overall and may need further evaluation to determine how best to support the patient .
36 One unusual finding fr om aim 4 was that Engulfment and Enrichment were related to diabetes self care behaviors and HbA1c. H owever, the findings were counterintuitive because Engulfment and Enrichment were associated with not only high er (i.e. , better) reported self care behavio rs but also higher HbA1c ( i.e., poorer diabetes control). The self care scale used for this study did not include questions about medication adherence; therefore, it is possible that despite greater frequency of self care behaviors such as exercise and con suming a health y diet, these patients may have been non adherent to their medication regimen leading to worse HbA1c values . It is also important to consider that the self care measure was based on self report rather than objective measurement. Overall, how ever, t he results of the IIQ in a primary care sample, further highlight the importance of examining how patients are scoring on all four dimensions of the IIQ in order to understand how they are likely to be fairing emotionally and in managing their diabe tes. Clinical Implications The current study may have important implications for type 2 diabetes care. T he degree and manner to which individuals integrate diabetes into their sense of identity may have impact how they are functioning from both a psychological and diabetes management standpoint. This was demonstrated in the results from both the online survey respondents and the primary care participants. Individuals who are not able to integrate diabetes into their identity (i.e. high er scores on Reject ion and Engulfment) are more likely to feel emotionally overwhelmed, which may impact their ability to engage in effective diabetes self care and put them at higher risk of long term diabetes complications . Clinical interventions may wis h to identif y and treat individuals, who are high on the Rejection or Engulfment dimensions of the IIQ to mitigate this risk .
37 An Acceptance and Commitment Therapy (ACT) approach may be particularly appropriate for intervening with i ndividuals with poor il lness integration, because the ACT approach focus es on acceptance of seemingly negative aspects of the self while continuing to (Hayes, Strosahl, & Wilson, 2012) . One small (N=81) but promis in g randomized controlled trial utilized an ACT approach and demonstrated positive diabetes related outcomes (Gregg, Callaghan, Hayes, & Glenn Lawson, 2007). In the study , participants with type 2 diabetes were randomized to attend a one day diabetes educati on workshop that either did or did not have an added ACT component that focused on diabetes related distressing thoughts. The results of the study found that 3 months after the workshop, participants in the group with the added ACT component reported using ACT co ping strategies and better diabetes self care , and were more likely to have an HbA1c in the target range when compared to the non ACT group. The results of the current study also highlight the importance of utilizing a multi disciplinary team when caring for patients with type 2 diabetes. Patients, who struggl e to manage their diabetes, may need treatment support from their physician , educational support from a nurse or diabetes educator , and illness integration support from a behavioral health clinician. Behavioral health clinicians training in both cognitive and health behavior interventions make them particularly well suited to using psychological interventions to help guide patients toward integration of diabetes into their identities. Addit ionally, behavioral health clinicians can plan a critical role in providing psychological insight to the rest of the medical team regarding illness identity and how it may be influencing a particular patient ability to adhere to treatment recommendations .
38 Limitations and Suggestions for Future R esearch The primary limitation of the current study is that all measures (except for data extracted from the medical record for the primary care sample) were self report. Although, self report was the most appro priate approach for assessing the psychometric validity of the IIQ, in the future alternative approach es may be considered such as use of a secondary reporter (i.e. spouse or family member), and objective measures for self care behaviors (i.e. acceleromete r and electronic pill box). An additional limitation is the lack of longitudinal data. In future research, i t will be important to determine test retest reliability of the IIQ as well as to determine the relationship that the IIQ dimensions have with psych ological and diabetes specific functioning over time. Longitudinal data analysis will also allow for analytic examination of the directionality of the relationship between IIQ dimensions and psychological and diabetes specific functioning. Additionally, fu ture research should further explore the relationship between the Enrichment and Engulfment dimensions. Participant interviews and qualitative methodology may be a particularly useful approach for further exploring this connection in individuals with type 2 diabetes. Conclusions The IIQ may be a useful measure for assessing four different ways in w hich diabetes may be integrated into identity for adults with type 2 diabetes. Not only is the IIQ psychometric ally supported , it may also be a useful tool for providing insight into how an individual may be functioning from a psychological and diabetes specific perspective. This study found that the dimensions that reflect better identity integration (i.e. Acceptance and Enrichment) are generally associ ated with better psychological well being and better diabetes specific functioning ; whereas, dimensions that reflect poor identity integration (i.e. Rejection and Engulfment) are generally
39 associ ated with poor psychological well being and poor diabetes specific funct ioning. These findings indicate that understudied aspect of adjusting to and managing type 2 diabetes.
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45 APPENDIX QUESTIONNAIRE ITEMS Demographic and Clinical Questions Date of Birth Month: _____ Date: _____ Y ear: _______ Sex Please indicate your sex? 1. Male 2. Female 3. Other Gender How would you describe yourself? 1. Male 2. Female 3. Trans Male/Trans Man 4. Trans Female/Trans Woman 5. Genderqueer/Gender Non Conforming 6. Different Identity Marital Status What is your current marital status? 1. Single 2. Married 3. Domestic partnership (shared residence, but not married) 4. Separated 5. Divorced 6. Widowed 7. Other, specify _______________________________ Education What is the highest level of school you have completed or the highest degree you have received? 1. High school incomplete or less 2. towards college credit) 3. 4. 5. Some postgraduate or professional schooling, no postgraduate degree 6.
46 Ethnicity Are you of Hispanic, Latino, or Spanish origin, such as Mexican, Puerto Rican or Cuban? 1. Yes 2. No Race Which of the following describes your race? [You can select as many as apply] 1. White 2. Black of African American 3. Asian or Asian American 4. Native American /American Indian/Alaska Native 5. Native Hawaiian/Other Pacific Islanders 6. Some other race, specify:___________ Income Last year, what was your total family income from all sources, before taxes? 1. Less than $10,000 2. $10,000 to less than $20,000 3. $20,000 to less than $30,000 4. $30,000 to less than $40,000 5. $40,000 to less than $50,000 6. $50,000 to less than $75,000 7. $75,000 to less than $100,000 8. $100,000 to less than $150,000 9. $150,000 or more Self Reported Healt h In general, how would you rate yo ur overall health? 1. E xcellent 2. V ery good 3. G ood 4. F air 5. P oor Medical Visit Adherence In the past 12 months, how many times did you visit a doctor or physician? Do not include visits while in the hospital or the hospital emergenc y department.__________ visits Diabetes Duration At what age were you diagnosed with diabetes (or high blood sugar)? ____ Family History of Diabetes Does anyone else in your family have type 2 diabetes? Check all that apply. 1. No 2. Yes, my grandparent(s) 3. Yes, my parent(s)
47 4. Yes, my aunt(s)/uncle(s) 5. Yes, my sibling(s) 6. Yes, my cousin(s) 7. Yes, my spouse 8. Other Self Administered Comorbidities Questionnaire (SCQ) Instructions: The following is a list of common problems. Please indicate if you currently have the problem, if you receive trea tment for it, and if it limits your activities. Do you have the problem? Do you receive treatment for it? Does it limit your activities? Problem No Yes No Yes No Yes Heart disease High blood pressure Lung disease Diabetes Ulcer or stomach disease Anemia or other blood disease Cancer Depression Osteoarthritis, or degenerative arthritis Back pain Rheumatoid arthritis Other medical problem: _____________ Diabetes Self Management Which of the following medications for your diabetes has your doctor prescribed? Please check all that apply. a. An insulin shot 1 or 2 times a day. b. An insulin shot 3 or more times a day. c. Diabetes pills to control my blood sugar level. d. Ot her (specify): e. I have not been prescribed either insulin or pills for my diabetes.
48 Illne ss Identity Questionnaire (IIQ) For each statement, indicate how much you agree 1 (strongly disagree) to 5 (strongly agree) 1. I refuse to see my diabetes as part of myself. 3. I never talk to others about my diabetes. 4. I hate being talked to about my diabetes. 5. I just avoid thinking about my diabetes. 6. My diabetes simply belong s to me as a person. 7. My diabetes is part of who I am. 8. I accept being a person with diabetes. 9. I am able to place my diabetes in my life. 10. I have a clear picture or understanding of my diabetes. 11. I have learned to accept the limitations impose d by my diabetes. 12. My diabetes dominates my life. 13. My diabetes has a strong impact on how I see myself. 14. I am preoccupied with my diabetes. 15. My diabetes influences all my thoughts and feelings. 16. My diabetes completely consumes me. 17. It seems as if everything I do is influenced by my diabetes. 18. My diabetes prevents me from doing what I would really like to do. 19. My diabetes limits me in many things that are important to me. 20. Because of my diabetes, I have grown as a person. 21. B ecause of my diabetes, I know what I want out of life. 22. Because of my diabetes, I have become a stronger person. 23. Be cause of my diabetes, I realize what is really important in life. 24. Because of my diabetes, I have learned a lot about myself. 25. M y diabetes has brought me closer to my family and friends. 26. Because of my diabetes, I have learned to work through problems and not just give up. 27. Because of my diabetes, I have learned to enjoy the mo ment more.
49 Diabetes Distress Scale (DDS) Diabetes Self Care Activities Measure (SDSCA): The questions below ask you about your diabetes self care activities during the past 7 days. If you were sick during the past 7 days, please think back to the last 7 days that you were not sick. If you are un able to complete the questions on your own, please ask for assistance. Please check only one box for each question. Diet Number of Days 1. How many of the last SEVEN DAYS have you followed your eating plan? 0 1 2 3 4 5 6 7 2. On how many of the last seven days did you eat five or more servings of fruits and vegetables? 0 1 2 3 4 5 6 7
50 3. On how many of the last seven days did you eat high fat foods such as red meat or full fat dairy products? 0 1 2 3 4 5 6 7 4 . On how many of the last seven days have you followed a healthful eating plan? 0 1 2 3 4 5 6 7 Exercise Number of Days 1. On how many of the last seven days did you participate in at least 30 minutes of physical activity? 0 1 2 3 4 5 6 7 2. On how many of the last seven days did you participate in a specific exercise session (such as such swimming, walking, biking) other than what you do around the house or as part of your work? 0 1 2 3 4 5 6 7 Blood Sugar Testing Number of Days 1. On how many of the last seven days did you test your blood sugar? 0 1 2 3 4 5 6 7 2. On how many of the last seven days did you test your blood sugar the number of times recommended by your health care provider? 0 1 2 3 4 5 6 7 Foot Care Number of Days 1. On how many of the last seven days did you check your feet? 0 1 2 3 4 5 6 7 2. On how many of the last seven days did you inspect the inside of your shoes? 0 1 2 3 4 5 6 7 The Patient Health Questionnaire (PHQ 8) Over the past 2 weeks, how often have you been bother by any of the following problems? Not At all Several Days More Than Half the Days Nearly Every Day 1. Little interest of pleasure in doing things 0 1 2 3 1. Feeling down, depressed or hopeless 0 1 2 3 3. Trouble falling asleep, staying asleep, or sleeping too much 0 1 2 3 4. Feeling tired or having little energy 0 1 2 3 5. Poor appetite or overeating 0 1 2 3 6. Feeling bad about yourself failure or have let yourself or your family down 0 1 2 3 7. Trouble concentrating on things, such as reading the newspaper or watching television 0 1 2 3
51 8. Moving or speaking so slowly that other people noticed. Or, the opposite being so fidgety or restless than you have been moving around a lot more than usual 0 1 2 3 Satisfaction With Life Scale (SWLS): Below are five statement with which you may agree or disagree. Using the 1 7 scale below, indicate your agreement with each item ((1) strongly disagree, (2) disagree, (3) slightly disagree, (4) neither agree nor disagree, (5) slightly agree, (6) agree, (7) strongly agree). Response from 1 to 7 1. In most ways my life is close to my ideal. ______ 2. The condition of my life are excellent. ______ 3. I am satisfied with my life. ______ 4. So far I have gotten the important things I want in life. ______ 5. If I could live my life over, I would change almost nothing. ______