Social cognitive predictors of rehabilitation outcomes in individuals with parkinson's disease

Physical therapy (PT) and secondary prevention programs (SPPs) are often prescribed as treatment for Parkinson's disease (PD). As there are presently no cures for PD, understanding key factors that contribute to rehabilitation engagement and patientcentered outcomes remains an important task. Guided by Social Cognitive Theory (SCT), the purpose of this dissertation was to examine the relevance of specific social cognitive variables in better understanding and predicting salient rehabilitation behaviors and patient-centered outcomes among individuals with PD. In study 1, semi-structured interviews were conducted with 10 PD patients attending an SPP in order to examine the characteristics of caring (a personal factor), as well as the potential implications of caring for the quality of their SPP experience and relevant outcomes. Inductive content analysis revealed four themes related to the characteristics of caring (showing interest, creating a supportive atmosphere, benevolence, and paying attention) and two themes related to implications of caring (rehabilitation attendance and rehabilitation effort). Findings from study 1 indicate that practitioners should strive to create caring climates within clinics by cultivating the aforementioned characteristics of caring. Building on study 1, the second study quantitatively examined potential relationships between caring, adherence (behavior), and a salient personal factor commonly assessed in PT/SPP settings, namely, quality of life. Study 2 also examined whether adherence mediated the caring climate/quality of life relationship. Surprisingly, no significant relationships or mediation iv was evident. Reasons for the nonsignificant relationships are explored in greater detail in the discussion section of study 2. Finally, the aim of study 3 was to further explore the value of SCT in explaining salient rehabilitation behaviors by exploring relationships between caring (environmental factor), tripartite efficacy (personal factor), and adherence (behavioral factor). Findings from study 3 included significant correlations between caring and adherence, adherence and tripartite efficacy, as well as tripartite efficacy and adherence. Although a multiple mediation analysis yielded nonsignificant results, further analysis using RISE as the sole mediator of the caring climate/adherence relationship resulted in a significant mediation model. Study 3 findings bolster qualitative results from study 1, indicating the positive benefits of a caring climate. In particular, practitioners should seek to create caring climates in order to promote increased perceptions of RISE and rehabilitation adherence. The concluding chapter offers theoretical and practical implications for all three studies.

SOCIAL COGNITIVE PREDICTORS OF REHABILITATION OUTCOMES IN INDIVIDUALS WITH PARKINSON’S DISEASE by Lindsey Greviskes A dissertation submitted to the faculty of The University of Utah in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Exercise and Sport Science Department of Health, Kinesiology, and Recreation The University of Utah August 2018 Copyright © Lindsey Greviskes 2018 All Rights Reserved The University of Utah Graduate School STATEMENT OF DISSERTATION APPROVAL The dissertation of Lindsey Greviskes has been approved by the following supervisory committee members: Leslie Podlog , Chair 4/5/2018 Maria Newton , Member 4/5/2018 Ryan Burns , Member 4/5/2018 Leland Dibble , Member 4/5/2018 Wanda Pillow , Member and by the Department/College/School of Mark Williams Date Approved Date Approved Date Approved Date Approved Date Approved , Chair/Dean of Health, Kinesiology, and Recreation and by David B. Kieda, Dean of The Graduate School. ABSTRACT Physical therapy (PT) and secondary prevention programs (SPPs) are often prescribed as treatment for Parkinson’s disease (PD). As there are presently no cures for PD, understanding key factors that contribute to rehabilitation engagement and patientcentered outcomes remains an important task. Guided by Social Cognitive Theory (SCT), the purpose of this dissertation was to examine the relevance of specific social cognitive variables in better understanding and predicting salient rehabilitation behaviors and patient-centered outcomes among individuals with PD. In study 1, semi-structured interviews were conducted with 10 PD patients attending an SPP in order to examine the characteristics of caring (a personal factor), as well as the potential implications of caring for the quality of their SPP experience and relevant outcomes. Inductive content analysis revealed four themes related to the characteristics of caring (showing interest, creating a supportive atmosphere, benevolence, and paying attention) and two themes related to implications of caring (rehabilitation attendance and rehabilitation effort). Findings from study 1 indicate that practitioners should strive to create caring climates within clinics by cultivating the aforementioned characteristics of caring. Building on study 1, the second study quantitatively examined potential relationships between caring, adherence (behavior), and a salient personal factor commonly assessed in PT/SPP settings, namely, quality of life. Study 2 also examined whether adherence mediated the caring climate/quality of life relationship. Surprisingly, no significant relationships or mediation was evident. Reasons for the nonsignificant relationships are explored in greater detail in the discussion section of study 2. Finally, the aim of study 3 was to further explore the value of SCT in explaining salient rehabilitation behaviors by exploring relationships between caring (environmental factor), tripartite efficacy (personal factor), and adherence (behavioral factor). Findings from study 3 included significant correlations between caring and adherence, adherence and tripartite efficacy, as well as tripartite efficacy and adherence. Although a multiple mediation analysis yielded nonsignificant results, further analysis using RISE as the sole mediator of the caring climate/adherence relationship resulted in a significant mediation model. Study 3 findings bolster qualitative results from study 1, indicating the positive benefits of a caring climate. In particular, practitioners should seek to create caring climates in order to promote increased perceptions of RISE and rehabilitation adherence. The concluding chapter offers theoretical and practical implications for all three studies. iv TABLE OF CONTENTS ABSTRACT ………………………………………………………………………......... iii LIST OF FIGURES ………………………………………………………………......... vii LIST OF TABLES …………………………………………………………………..... viii ACKNOWLEDGMENTS…………………………………………………………......... ix Chapters 1.INTRODUCTION ……………………………………………………………….......... 1 Overview of Important Literature .......................................................................... 1 Parkinson’s Disease .................................................................................. 1 Physical Therapy and Secondary Prevention Programs for Individuals With PD .................................................................................................... 3 Social Cognitive Theory ........................................................................... 4 Caring ........................................................................................................ 6 Tripartite Efficacy ................................................................................... 10 Caring, Tripartite Efficacy, Adherence, and Quality of Life ................... 13 General Research Aims........................................................................................ 14 References ........................................................................................................... 17 2. STUDY 1: CARING INTERACTIONS IN SECONDARY PREVENTION PROGRAMS: A QUALITATIVE INQUIRY OF INDIVIDUALS WITH PARKINSON’S DISEASE ............................................................................................. 22 3. STUDY 2: CARING CLIMATE, ADHERENCE, AND QUALITY OF LIFE AMONG INDIVIDUALS WITH PARKINSON’S DISEASE: A MEDIATION ANALYSIS ....................................................................................................................23 Introduction .......................................................................................................... 23 Method ................................................................................................................. 28 Participants................................................................................................ 28 Procedures ................................................................................................. 29 Measures ................................................................................................... 31 Analyses .................................................................................................... 34 Results .................................................................................................................. 35 Discussion ............................................................................................................ 37 References ............................................................................................................ 42 4. STUDY 3: CARING, TRIPARTITE EFFICACY, AND ADHERENCE TO REHABILITATION PROGRAMS AMONG INDIVIDUALS WITH PARKINSON'S DISEASE: A MULTIPLE MEDIATION ANALYSIS .................................................. 46 Introduction .......................................................................................................... 46 Method ................................................................................................................. 51 Participants............................................................................................... 51 Procedures ................................................................................................ 52 Measures .................................................................................................. 54 Analyses ................................................................................................... 57 Results .................................................................................................................. 59 Discussion ............................................................................................................ 62 References ............................................................................................................ 67 5.CONCLUSION ............................................................................................................ 71 Summary .............................................................................................................. 72 Study 1 ..................................................................................................... 72 Study 2 ..................................................................................................... 72 Study 3 ..................................................................................................... 73 Implications.......................................................................................................... 75 Future Directions ................................................................................................. 78 References ............................................................................................................ 81 Appendices A. CONSENT FORMS.................................................................................................... 83 B. DEMOGRAPHIC SURVEY ...................................................................................... 88 C. CARING CLIMATE SCALE ..................................................................................... 91 D. ADHERENCE MEASURE ....................................................................................... 93 E. PARKINSON’S DISEASE QUESTIONNAIRE ........................................................ 95 F. TRIPARTITE EFFICACY ITEMS ............................................................................. 99 vi LIST OF FIGURES 1.1 Reciprocal Determinism .............................................................................................. 5 4.1 Multiple Mediation Model ......................................................................................... 58 4.2 Relationship Between Caring, Tripartite Efficacy, and Adherence............................ 60 4.3 Relationship Between Caring, RISE, and Adherence................................................. 61 LIST OF TABLES 3.1. Demographic Data …………………………………………………………….........29 3.2. Descriptive Statistics ………………………………………………………….........36 3.3. Correlations Between Caring, Adherence, and Quality of Life ………………........36 3.4. Mediation Model PDQ Subscale Effects ……………………………………...........38 4.1. Demographic Data …………………………………………………….....................53 4.2. Correlation Matrix …………………………………………………….....................60 ACKNOWLEDGMENTS Throughout the course of my graduate studies and specifically throughout my work on this dissertation, there were several individuals who were particularly influential. I would like to specifically acknowledge several of those individuals for their support, guidance, and contributions to this dissertation. First, I would like to offer my appreciation to my committee members. The guidance and wisdom offered by my committee was beyond compare. My committee chair and advisor, Dr. Les Podlog, deserves special recognition for his substantial role in my academic and professional development. I would also like to acknowledge my peers, Morgan Hall and Chris Hammer. Both Morgan and Chris provided support and assistance during our doctoral studies and were great friends who brought positivity and humor to the arduous process of completing a dissertation. Finally, I would like to thank my family. My parents and siblings have been my steadfast support system from day one and continue to provide me with encouragement and inspiration. My husband, Nate, has provided me with more support than I could ever imagine on this journey. His sacrifice and patience throughout the process has made this possible. CHAPTER 1 INTRODUCTION Individuals with Parkinson’s disease (PD) are often prescribed physical therapy (PT) exercise programs or secondary prevention programs (SPPs) as part of their treatment regimen (Frazzitta, Maestri, Uccellini, Bertotti, & Abelli, 2009; Tomlinson et al., 2012). The advanced age at which most individuals are diagnosed with PD, coupled with the progressive nature of the symptoms, make adherence to SPPs and PT programs particularly challenging (Ellis et al., 2013). Research has demonstrated numerous benefits resulting from consistent PT/SPP participation, such as increased functional ability, mobility, decreased episodes of freezing, and postural improvements (Frazzitta, et al., 2009; Tomlinson, et al., 2012). To achieve such outcomes, it is essential to develop strategies to promote adherence to PT and SPPs. Overview of Important Literature Parkinson’s Disease Parkinson’s disease is characterized by progressive degeneration of nerve cells that results in impairments in movement and cognition. Physical symptoms include (but are not limited to) rigidity, impaired posture, impaired balance, bradykinesia (slow 2 movements), and resting tremors (Mardsen, 1996). Cognitively, individuals with PD may suffer depression, anxiety, and memory insufficiencies (Mardsen, 1996). Although there is currently no cure for PD, several accepted, but costly, treatments are available that can help to slow the progression of the disease and aid in symptom management. In 2010, the prevalence of individuals diagnosed with Parkinson’s disease (PD) in the United States was estimated at 630,000 (Kowal, Dall, Chakrabarti, Storm, & Jain, 2013). Cost burden for the United States for treatment of patients with PD exceeds $14 million and continues to rise (Kowal et al., 2013). Healthcare advancements and generational shifts (i.e., baby boomers) have led researchers to predict longer life expectancies and increased prevalence of chronic diseases, such as PD (Wirdefeldt, Adami, Cole, Trichopoulos, & Mandel, 2011). Wirdefeldt and colleagues predict that by the year 2030, world-wide prevalence rates of PD will be between 8.7 to 9.3 million. Consequently, developing cost-effective, efficient strategies to manage PD is critical. There is no cure for PD, so treatment modalities are aimed at slowing the progression of disability and improving quality of life (Mardsen, 1996). Researchers specializing in PD have described quality of life in terms of proficiency in the following areas: mobility, activities of daily living, well-being, stigma about disease/disability, social support, cognitions, communication, and bodily discomfort (Bushnell & Martin, 1999; Jenkinson, Fitzpatrick, Peto, Greenhall, & Hyman, 1997; Peto et al., 1995). While quality of life addresses many different domains of health and daily living, physical symptoms are often the first to manifest in PD (Mardsen, 1996). 3 Physical Therapy and Secondary Prevention Programs for Individuals With PD Physical therapy or enrollment in an SPP is an important component of treatment for those with PD in order to combat the debilitating physical effects of the progressive disease (Tomlinson et al., 2012). The goal of such SPP/PT programs is to slow disability progression, increase individuals’ quality of life, maximize functional ability, and minimize secondary complications (Frazzitta, Maestri, Uccellini, Bertotti, Abelli, 2009; Munneke et al., 2010; Tomlinson et al., 2013). Patients may participate in a variety of activities during their SPP and PT programs, but most practitioners focus on gait, balance, reaching, and grasping exercises (Frazzitta, Maestri, Uccellini, Bertotti, Abelli, 2009; Munneke et al., 2010; Tomlinson et al., 2012). Tomlinson and colleagues’ (2012) conducted a systematic review of PT/SPP program efficacy for patients with PD. The review revealed improved scores in gait-related measures, mobility, and overall function (i.e., gait velocity, 2- and 6-minute walk test, step length, sit to stand, etc.) in individuals with PD who participated in PT/SPP programs. While SPP/PT program participation has been linked to positive patient-centered outcomes such as decreased levels of disability, increased mobility, and increased functionality (Frazzitta et al., 2009; Tomlinson et al., 2012), adherence to these programs is often low (Ellis et al., 2013). Forkan and colleagues (2006) found that individuals with chronic diseases that affected their balance and motor control (i.e., PD), listed eight barriers to participating in PT/SPP exercise programs. Barriers included no interest, poor health, weather, depression, weakness, fear of falling, shortness of breath, and low outcomes expectations. Additionally, Mardsen (1996) has shown that patients with PD 4 often suffer psychosocial effects not common in other chronic diseases that use exercise programs for treatment. For example, depression and anxiety often accompany PD due to the progressive nature and degeneration of brain and nerve cells (Mardsen, 1996). These psychosocial issues can be additional barriers that cause patients to miss PT/SPP sessions as well as decreasing confidence and increasing fear of falling. While some of the aforementioned barriers such as the weather cannot be controlled, others such as confidence, fear of falling, outcome expectations, depression, anxiety, and lack of interest in movement and rehabilitation are amenable to change and may be influenced by a health practitioner. Social Cognitive Theory In order to more closely examine factors influencing rehabilitation adherence and patient-centered outcomes (e.g., quality of life), it is instructive to examine relevant theoretical frameworks. One prominent framework that has been used to examine psychosocial variables influencing health behaviors is Social Cognitive Theory (SCT). Within SCT, Bandura posits that personal factors such as self-efficacy, personality, and personal experiences, as well as environmental factors, for instance the physical and social environment, and behaviors interact in a reciprocal fashion, what he termed reciprocal determinism (Bandura, 1986, 1998, 2004). All three components of reciprocal determinism have the ability to influence one another in a bidirectional fashion (see Figure 1.1). For example, in PT, a patient with low self-efficacy, a personal factor, may not initiate or fully engage in PT exercises (behavior). Furthermore, in the above example, because the individual failed to engage in rehabilitation exercises (behavior), 5 Behavior (Adherence) Environmental Factor (Caring Climate) Personal Factor (Tripartite Efficacy) Figure 1.1 Reciprocal Determinism she may lack the physical strength or endurance needed to spend time outside her home, and may therefore experience reduced contact with and social support from family and friends (environmental factor). The lack of social support may subsequently result in a decrease in efficacy (personal factor) because she does not feel supported by family and friends to pursue her rehabilitation goals, starting the cycle over again. While Bandura (1986, 1998, 2004) suggests that relationships between factors may exist in a cyclical nature, as in the example above, he also posits bidirectional relationships between variables. For example, just as engagement in PT exercises (behavior) may positively impact perceptions of self-efficacy (personal factor), so to greater efficacy perceptions may facilitate greater adherence (behavior). The reciprocal nature of behavioral and personal factors holds true for all three variables articulated in the model (i.e., behavior is influenced by environmental factors and environmental factors are influenced by behavior). Recent research has highlighted two factors that fit within SCT that seem relevant to salient rehabilitation behaviors and outcomes, namely, a caring rehabilitation 6 climate and tripartite efficacy (Greenfield, 2006; Greenfield et al., 2008; Jackson, Dimmock, Taylor, & Hagger, 2012). Further examination is needed to determine specific implications of caring and tripartite efficacy on salient rehabilitation behaviors and outcomes, such as adherence and quality of life. Caring Although the notion of “care” is not a novel concept in the healthcare setting, the definition of “care” is somewhat ambiguous. Noddings (1984) originally conceptualized caring as it pertained to student and learning outcomes. Noddings argued that it was important for children to feel cared for and learn to care if they were to fully engage in educational activities. Noddings (1984), along with other researchers, described caring as a moral orientation that influences decision making (Greenfield, Anderson, Cox, & Tanner, 2008). In a rehabilitation setting, Greenfield and colleagues found that when practitioners were more caring oriented, they were more attentive to other’s needs and feelings, which aided in program design and implementation decision making from a patient-centered perspective. Greenfield and colleagues’ (2008) findings are reminiscent of Noddings’ concepts of engrossment (complete, undivided attention) and motivational displacement (placing another’s goals and needs before one’s own), which she suggested were central to the notion of caring (1984). Importantly, Noddings argued that motivational displacement “involves stepping out of one’s own personal frame of reference and into the other’s” (1984, p. 24) in order to fully empathize and care for that individual. The concept of caring that Noddings described has been further developed over 7 the last few decades. Researchers across various settings have conceptualized caring in different ways, many using Nodding’s (1984) description as a starting point. In a clinical healthcare setting, Gabard and Martin (2003) described caring in terms of providing services for patients, being careful, or exercising due care. While healthcare researchers have yet to offer a consistent definition of caring, physical activity researchers have described caring in terms of creating a caring climate. Newton and colleagues (2007) described a caring climate as “the extent to which individuals perceive a particular setting to be interpersonally inviting, safe, supportive and capable of providing the experience of being valued and respected” (Newton et al., 2007, p. 290). Consistent with this definition, Gootman and Eccles (2002) have suggested that programs ̶ including physical activity programs ̶ with a positive developmental structure should include supportive relationships that are characterized by warmth, closeness, caring, support, guidance, good communication, secure attachment, and responsiveness. Finally, in a rehabilitation setting, caring has been defined as, “… the concern, empathy, and consideration for the needs and values of others” (American Physical Therapy Association, 2014). While the previous definition/description is standardized for PT practice, there is no widely accepted definition in terms of research, perhaps due to the lack of empirical research on care in the rehabilitation setting (Gabard & Martin, 2003). In terms of empirical inquiry on caring, prior to the current dissertation, only three studies had been conducted in a PT/SPP setting, all of which are qualitative in nature. Greenfield found three major themes in interviews with five expert physical therapists including ethics of caring, risks and conflicts of caring, and learning to care (Greenfield, 2006). Physical therapists believed caring was a moral orientation that guided their 8 decision making in their practice. The practitioners also noted that they valued caring, but it was often hard to demonstrate due to the cost cutting, profit-minded nature of the healthcare field. In a subsequent qualitative study, Greenfield and colleagues interviewed seven novice physical therapists who articulated some additional barriers to caring. The novice physical therapists noted dealing with “difficult patients,” the culture of the workplace, and time constraints as additional barriers to caring in PT (Greenfield et al., 2008). The novice practitioners reiterated what was previously asserted by expert physical therapists, in particular, that caring was more than just a construct, but also a core value. Finally, Greenfield and colleagues (2010) ascertained the perspective of nine individuals enrolled in PT. The researchers found the theme of “mindful caring,” which encompassed personally valuing the patient, helping to empower them, engaging in open communication, and providing exceptional service. Although different definitions and descriptions of caring have been offered, studies outside the rehabilitation setting have shown that caring has implications for healing, well-being, and adherence (Luck, 1997; Newton et al., 2007). For example, feeling cared for by a general care provider was associated with increased well-being, greater self-care, autonomy, independence, and hope among 15 individuals hospitalized with spinal cord injuries (Lucke, 1997). In physical activity and nursing contexts, caring has been shown to increase adherence and participation in exercise programs and prescribed treatments, respectively (Brown & Fry, 2013; Brown, Fry, & Little, 2013; Newton et al., 2007; Watson, 1979, 2005, 2006). Specifically, children enrolled in physical activity programs that were caring-based (i.e., the students feel safe, supported, and respected) reported greater feelings of care, which in turn, predicted greater 9 attendance, participation, and retention levels (Newton et al., 2007). Hellison (2003) and Ennis (1999) also reported that the relationship between caring and attendance/participation was important, as they suggested that caring was instrumental in engaging students in physical education programs. Given previous research findings on caring outcomes, it seems reasonable to suggest that a caring climate may have similar benefits for those undergoing PT/SPP treatment for Parkinson’s disease. The average age of onset for PD is approximately 60 years old (Mardsen, 1996). Older individuals tend to value the interpersonal “bedside manner” of healthcare more so than their younger counterparts (Greene, Adelman, Friedmann, & Charon, 1994). Additionally, given the degenerative nature of PD and accompanying psychosocial issues, such as depression, anxiety, and memory loss (Mardsen, 1996), individuals with PD may find a caring climate particularly inviting in a clinical setting. As previously discussed, quality of life is a focus in PD treatment. Quality of life addresses several areas of health and daily living, including psychological and social facets of life. While adherence to physical therapy and/or secondary prevention programs remains the cornerstone of efforts to offset the disability progression among those with PD, caring rehabilitation climates may also mitigate the psychosocial components of disease progression. In particular, caring climates may help address the social and emotional needs of individuals with PD by fostering supportive, attentive, and meaningful interpersonal interactions between patients and practitioners. To date, scant attention has been paid to the physical, psychological, or social implications of being cared for in a rehabilitation context – the focus of the doctoral project (study 1) described in this dissertation. 10 Beyond environmental factors, personal factors are also posited to impact individual behaviors within SCT. According to Bandura (1986, 1998, 2004), a fundamental personal factor influencing individual behaviors, such as rehabilitation adherence is self-efficacy. Consistent evidence in the PT PT/SPP realm points to the importance of self-efficacy in enhancing adherence to rehabilitation programs (Carlson et al., 2001; Hellstrom et al., 2003; Moon & Backer, 2000). Unfortunately, individuals with PD often have low efficacy beliefs regarding their ability to undertake PT/SPP exercises, given perceived barriers such as fear of falling, physical weakness, and concerns about failing health. More recently, the concept of self-efficacy has been expanded in order to describe the relational aspects of efficacy. The three forms, termed tripartite efficacy (Lent & Lopez, 2002), are described in greater detail below. Additionally, empirical work examining relevant outcomes of tripartite efficacy is discussed. Tripartite Efficacy Originally conceptualized by Lent and Lopez in 2002, the notion of tripartite efficacy consists of three forms of efficacy beliefs. First, self-efficacy has been defined as the belief in one’s capabilities in order to accomplish a specific task or set of tasks (Bandura, 1986, 1998, 2004). In a physical therapy setting, an individual may feel confident in their ability to complete their PT program successfully. Second, otherefficacy has been defined as the level of confidence an individual has in a significant other’s ability to complete a task or set of tasks (Lent & Lopez, 2002). For example, a patient may feel confident that his or her physical therapist can successfully design and implement a PT program. Lastly, relation-inferred self-efficacy (RISE) refers to an 11 individual’s estimation of a significant other’s level of confidence in the individual’s ability to perform certain behaviors (Lent & Lopez, 2002). In a physical therapy example, the patient’s belief that one’s practitioner held positive beliefs about his/her capabilities with regard to rehabilitation would indicate high levels of RISE. To date, much of the research on tripartite efficacy has been within educational and athletic contexts, examining coach-athlete relationships, teacher-student relationships, and peer-peer relationships (Jackson, Grove, & Beauchamp, 2010; Jackson, Knapp, & Beauchamp, 2008; Jackson, Whipp, Chua, Pengelley, & Beauchamp, 2012). A variety of positive outcomes, such as increased commitment, motivation, effort and relationship satisfaction, have been reported from an increase in tripartite efficacy beliefs in previous research in nonrehabilitation settings (Jackson et al., 2008; Jackson et al., 2010; Jackson et. al. 2012a). For example, Jackson and colleagues (2012a) reported that physical education students with elevated tripartite efficacy beliefs showed increases in effort and enjoyment in physical education courses and had increased levels of leisure time physical activity. Additionally, in a study involving coach-athlete dyads, Jackson and colleagues (2008) found that elevated levels of self-efficacy were related to improved motivation/effort, improved individual performance, and improved affect, whereas elevated levels of RISE led to enhanced relationship satisfaction and relationship persistence. While several positive outcomes have been reported in nonrehabilitation settings, only one study examining tripartite efficacy has been conducted in a rehabilitation context. While the notion of tripartite efficacy is a novel concept in the field of rehabilitation, numerous studies have found self-efficacy to predict a range of adaptive 12 outcomes in physical therapy (Carlson, Norman, Feltz, Franklin, Johnson, & Locke, 2001; Hellstrom, Lindmark, Wahlberg, & Fugl-Meyer, 2003; Moon & Backer, 2000). For example, Moon and Backer (2000) found that self-efficacy was the sole predictor of increased repetitions of leg exercises and longer ambulatory distances during physical therapy after major joint surgery. Additionally, Hellstrom and colleagues (2003) examined self-efficacy along with physical function and perceived health status. Participants that held higher self-efficacy beliefs about their balance during physical therapy showed improved physical function and perceived their health more positively than their lower efficacy counterparts. In terms of adherence to PT/SPP programs, Carlson and colleagues (2000) found that patients involved in a cardiac rehabilitation exercise program had greater adherence to the program when they felt more efficacious. Despite evidence pointing to the value of self-efficacy in facilitating rehabilitation adherence and functional outcomes (e.g., holding a positive outlook about one’s health), the virtual absence of work on tripartite efficacy in rehabilitation contexts highlights the need for research in this area. Given the relational nature of tripartite efficacy, the interactive nature of the PT/SPP setting (i.e., multiple interactions between patients, practitioners, support staff, administrators over an episode of care), and the intuitive appeal of linkages between tripartite efficacy and rehabilitation behaviors (e.g., adherence) and outcomes (e.g., quality of life), examination of tripartite efficacy in a rehabilitation setting seems warranted. To date, only one study that the researcher is aware of has addressed the tripartite model in a rehabilitation setting. Jackson, Dimmock, Taylor, and Hagger (2012) examined relationships between efficacy beliefs, patient satisfaction, relationship quality, 13 and engagement among orthopedic rehabilitation patients enrolled in one on-one clinic exercise programs. First, as posited by Lent and Lopez (2002), the tripartite efficacy constructs (self-efficacy, other efficacy, and RISE) were positively correlated with one another. Additionally, the researchers found a direct positive relationship between tripartite efficacy scores and relationship quality, as well as a positive indirect relationship with engagement (i.e., motivation, persistence). Furthermore, Jackson and colleagues discovered that when both the patient and practitioner held positive efficacy beliefs about themselves (self-efficacy), each other (other efficacy), and they believed that the other person was highly confident in their ability (RISE), both were more likely to view the relationship in a more positive manner. Although these initial findings regarding the influence of tripartite efficacy are encouraging, further examination is needed to elucidate the potential role of tripartite efficacy in enhancing rehabilitation adherence. Given the acknowledged importance of adherence to rehabilitation outcomes (Frazzitta et al., 2009; Munneke et al., 2010; Tomlinson et al., 2012), a better understanding of personal and environmental factors that promote its occurrence is of clear importance. Caring, Tripartite Efficacy, Adherence, and Quality of Life PT/SPP adherence has been shown to predict increases in functionality, mobility, and balance, important aspects of quality of life (Tomlinson et al., 2012). Additionally, quality of life is not only a physical measure of health, but includes psychosocial aspects of health as well, meaning caring may influence quality of life. Based on the aforementioned findings with regard to caring and adherence in fields outside of the 14 rehabilitation setting, it also seems reasonable to suggest that caring may be an environmental factor that influences PT/SPP adherence. Previous research has also shown tripartite efficacy to be a potential factor influencing adherence (Jackson et al., 2012b). Given low levels of self-efficacy experienced by patients with PD (Nilsson et al., 2010), coupled with the intuitive connection between caring and efficacy behaviors discussed above, it follows that feeling cared for may increase feelings of efficacy and in turn promote adherence. General Research Aims Overall, the aims of the present doctoral research program were to examine the influence of social cognitive variables on salient, patient-centered behaviors and outcomes, such as adherence to rehabilitation programs (PT and SPPs) and quality of life for patients with Parkinson’s disease. Given preliminary work acknowledging the role of caring and tripartite efficacy in a rehabilitation context, the aim of this doctoral dissertation was to build on previous work by examining three main questions of interest. Specifically, this dissertation qualitatively examined the nature and implications of the environmental factor of caring, relationships between caring, adherence, and quality of life, and finally, the relationships between caring, tripartite efficacy (a personal factor), and adherence. Study 1 The primary aims of study 1 were to gain a better understanding of the nature of caring in a SPP setting from the perspective of individuals with PD. Specifically, in order 15 to gain a more in depth understanding of caring, I sought to examine caring interactions beyond the physical therapist/patient, to include the entire rehabilitation team. The second purpose was to discover what implications, if any, caring might have for relevant patient-centered behaviors, such as adherence to, or effort during SPPs. Given the qualitative nature of the study, no a priori hypotheses were advanced. The implications of caring discovered from this study served as a foundation for the aims of the subsequent two studies. Study 2 The aim of study 2 was threefold. The first aim was to examine whether caring – an environmental factor – was predictive of PT/SPP adherence (behavior). The second aim was to investigate whether adherence (behavior) was predictive of quality of life (personal factor). The third aim was to examine whether adherence mediated the caring climate/quality of life relationship (environmental factor/personal factor). Based on previous research showing a connection between caring and adherence (Greviskes et al., in press) and adherence and quality of life (Baatile et al., 2000), it was hypothesized that caring would be directly related to adherence. Second, it was predicted that adherence would be directly related to quality of life. Third, it was hypothesized that adherence would mediate the relationship between caring and a composite quality of life score. Fourth, based on the multidimensional nature of quality of life and past research by Baatile and colleagues (2000) indicating adherence was more strongly related to some quality of life dimensions than others, I hypothesized that the indirect (mediating) effect of adherence would show significance for mobility, activities of daily living, cognitions, 16 emotional well-being, and bodily discomfort subscales, but not for stigma, social support, or communication subscales. Stigma, social support, and communication are likely unrelated to rehabilitation adherence due to the cognitive nature of these subscales. Conversely, the remaining quality of life subscales may be affected by physical changes that often occur following participation in PT/SPPs. Lastly, I hypothesized that adherence would be a significant mediator for the cognitive and emotional well-being components of QOL (i.e., cognitive and well-being subscales) as previous research has shown a connection between exercise participation and improved mood/ and well-being indicators (Fox, 1999; Penedo & Dahn, 2005; Tucker & Maxwell, 1992). Study 3 Building on the previous studies, the aim of the third study was threefold. First, I sought to examine relationships between a caring climate and the three forms of efficacy within the tripartite model. The second study aim was to examine the relationship between the three forms of efficacy within the tripartite model and adherence to PT/SPP exercises. The third and final objective was to determine if tripartite efficacy mediated the relationship between caring and adherence. Several hypotheses were advanced: 1) A caring climate would have a direct positive relationship with adherence; 2) A caring climate would have a direct positive relationship with SE, OE, and RISE (tripartite efficacy); 3) SE, OE, and RISE (tripartite efficacy) would each have a direct positive relationship with adherence; 4) SE, OE, and RISE would mediate the relationship between caring and adherence. A multiple mediation analysis using the Preacher and Hayes bootstrapping macro was used to examine the questions of interest. 17 Theoretically, the studies in this dissertation add to the current PD rehabilitation literature in several ways. First, study 1 is the first study to examine outcomes of caring in a rehabilitation context. While the qualitative nature of study 1 precludes generalization to a larger population, the quantitative methodology used in studies 2 and 3 allows for findings to be further generalized. Secondly, the hypothesized relationships between caring and adherence, caring and tripartite efficacy, and tripartite efficacy and adherence are framed in SCT and as such, findings from the studies may contribute to the growing literature base on SCT by examining SCT tenets in a novel context (rehabilitation) with a novel population (PD patients). Lastly, there are several studies outlined in the literature examining self-efficacy and adherence to rehabilitation (Carlson et al., 2001; Hellstrom et al., 2003; Moon & Backer 2000), however since there is only one study examining tripartite efficacy in rehabilitation (Jackson et al., 2012b), study 3 may provide additional support for the relationship between tripartite efficacy beliefs and adherence. In addition to theoretical advances, the current study has potential practical implications regarding adherence promotion and subsequent patient-centered outcomes. Given problems with adherence rates discussed previously, exploring pivotal factors influencing rehabilitation adherence can help direct intervention efforts aimed at improving mobility and quality of life among patients with PD. References American Physical Therapy Association Code of Ethics. Available at: http//www.apta.org/ PT_Practice/core_ethics (accessed September 2014). Bandura, A. (1986). Social foundations of thought and action: A social cognitive theory. Englewood Cliffs, NJ: Prentice-Hall, Inc. 18 Bandura, A. (1998). Health promotion from the perspective of social cognitive theory. Psychology and Health, 13(4), 623-649. Bandura, A. (2004). Health promotion by social cognitive means. Health Education & Behavior, 31(2), 143-164. Bandura, A. (2006). Guide for constructing self-efficacy scales. Self-efficacy Beliefs of Adolescents, 5, 307-337. Brown, T. C., & Fry, M. D. (2013). 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Barriers to exercise in people with Parkinson disease. Physical Therapy, 93(5), 628-636. Ennis, C. D. (1999). Creating a culturally relevant curriculum for disengaged girls. Sport, Education and Society, 4(1), 31-49. Forkan, R., Pumper, B., Smyth, N., Wirkkala, H., Ciol, M. A., & Shumway-Cook, A. (2006). Exercise adherence following physical therapy intervention in older adults with impaired balance. Physical Therapy, 86(3), 401-410. Frazzitta, G., Maestri, R., Uccellini, D., Bertotti, G., & Abelli, P. (2009). Rehabilitation treatment of gait in patients with Parkinson's disease with freezing: A comparison between two physical therapy protocols using visual and auditory cues with or without treadmill training. Movement Disorders, 24(8), 1139-1143. Fry, M. D., Guivernau, M., Kim, M. S., Newton, M., Gano–Overway, L. A., & Magyar, T. M. (2012). Youth perceptions of a caring climate, emotional regulation, and psychological well-being. Sport, Exercise, and Performance Psychology, 1(1), 44. 19 Gabard, D., & Martin, W.M. (2003). Physical therapy ethics. Philadelphia, PA: FA Davis Co. Gano-Overway, L. A. (2013). Exploring the connections between caring and social behaviors in physical education. Research Quarterly for Exercise and Sport, 84(1), 104-114. Gano-Overway, L. A., Newton, M., Magyar, T. M., Fry, M. D., Kim, M. S., & Guivernau, M. R. (2009). Influence of caring youth sport contexts on efficacyrelated beliefs and social behaviors. Developmental Psychology, 45(2), 329. Gootman, J. A., & Eccles, J. (Eds.). (2002). Community programs to promote youth development. Washington DC: National Academies Press. Greenfield, B. H. (2006) The meaning of caring in five experienced physical therapists. Physiotherapy Theory and Practice, 22(4), 175-187. Greenfield, B.H., Anderson, A., Cox, B., & Tanner, M.C. (2008) Meaning of caring to 7 novice physical therapists during their first year of clinical practice. Physical Therapy, 88(10), 1154-1166. Greenfield, B., Keough, E., Linn, S., Little, D., & Portela, C. (2010). The meaning of caring from the perspectives of patients undergoing physical therapy: A pilot study. Journal of Allied Health, 39(2), 43-47. Greviskes, L.E., Podlog, L., Newton, M., Dibble, L., Pillow, W., Burns, R., Hall, M., & Hammer, C. (2018). Caring interactions in secondary prevention programs: A qualitative inquiry of individuals with Parkinson’s Disease. Journal of Geriatric Physical Therapy, Published Online Ahead of Print. Hellison, D. (2003). Teaching personal and social responsibility in physical education. In C. Silverman & C.D. Ennis (Eds.), Student learning in physical education: Applying research to enhance instruction (pp. 241-254). Champaign, IL: Human Kinetics. Hellstrom, K., Lindmark, B., Wahlberg, B., & Fugl-Meyer, A. R. (2003). Self-efficacy in relation to impairments and activities of daily living disability in elderly patients with stroke: A prospective investigation. Journal of Rehabilitation Medicine, 35(5), 202-207. Jackson, B., Dimmock, J. A., Taylor, I. M., & Hagger, M. S. (2012a). The tripartite efficacy framework in client–therapist rehabilitation interactions: Implications for relationship quality and client engagement. Rehabilitation Psychology, 57(4), 308. Jackson, B., Grove, J. R., & Beauchamp, M. R. (2010). Relational efficacy beliefs and relationship quality within coach-athlete dyads. Journal of Social and Personal 20 Relationships, 27(8), 1035-1050. Jackson, B., Knapp, P., & Beauchamp, M. R. (2008). Origins and consequences of tripartite efficacy beliefs within elite athlete dyads. Journal of Sport & Exercise Psychology, 30(5), 512. Jackson, B., Whipp, P. R., Chua, K. P., Pengelley, R., & Beauchamp, M. R. (2012b). Assessment of tripartite efficacy beliefs within school-based physical education: Instrument development and reliability and validity evidence. Psychology of Sport and Exercise, 13(2), 108-117. Jenkinson, C., Fitzpatrick, R. A. Y., Peto, V. I. V., Greenhall, R., & Hyman, N. (1997). The Parkinson's Disease Questionnaire (PDQ-39): Development and validation of a Parkinson's disease summary index score. Age and Ageing, 26(5), 353-357. Lent, R. W., & Lopez, F. G. (2002). Cognitive ties that bind: A tripartite view of efficacy beliefs in growth-promoting relationships. Journal of Social and Clinical Psychology, 21(3), 256. Lucke, K. T. (1997). Knowledge acquisition and decision-making: Spinal cord injured individuals perceptions of caring during rehabilitation. SCI Nursing: A Publication of the American Association of Spinal Cord Injury Nurses, 14(3), 8795. Milne, M., Hall, C., & Forwell, L. (2005). Self-efficacy, imagery use, and adherence to rehabilitation by injured athletes. Journal of Sport Rehabilitation, 14(2), 150-167. Moon, L. B., & Backer, J. (2000). Relationships among self-efficacy, outcome expectancy, and postoperative behaviors in total joint replacement patients. Orthopedic Nursing, 19(2), 77-85. Munneke, M., Nijkrake, M. J., Keus, S. H., Kwakkel, G., Berendse, H. W., Roos, R. A., ... ParkinsonNet Trial Study Group. (2010). Efficacy of community-based physiotherapy networks for patients with Parkinson's disease: A clusterrandomised trial. The Lancet Neurology, 9(1), 46-54. Newton, M., Magyar, M., Kim, M. S., Watson, D., Gano-Overway, L., Fry, M., & Guivernau, M. (2007). Psychometric properties of the caring climate scale in a physical activity setting. Revista de Psicologia del Deporte, 16(1), 0067-84. Newton, M., Watson, D. L., Gano-Overway, L., Fry, M., Kim, M. S., & Magyar, M. (2007). The role of a caring-based intervention in a physical activity setting. The Urban Review, 39(3), 281-299. Nilsson, M. H., Drake, A. M., & Hagell, P. (2010). Assessment of fall-related selfefficacy and activity avoidance in people with Parkinson's disease. BMC 21 Geriatrics, 10(1), 1. Noddings, N. (1984). Caring: A feminine approach to ethics and moral education. Berkeley: University of California Press. Peto, V., Jenkinson, C., Fitzpatrick, R., & Greenhall, R. (1995). The development and validation of a short measure of functioning and well being for individuals with Parkinson's disease. Quality of Life Research, 4(3), 241-248. Tomlinson, C. L., Patel, S., Meek, C., Herd, C. P., Clarke, C. E., Stowe, R., ... Ives, N. (2012). Physiotherapy versus placebo or no intervention in Parkinson's disease. The Cochrane Library, 8. doi: 10.1002/14651858.CD002817.pub3. Watson, J. (1979). The philosophy and science of caring. Boston, MA: Little Brown. Watson, J. (2005). Caring science as sacred science. Philadelphia, PA: FA Davis Company. Watson, J. (2006). Caring theory as an ethical guide to administrative and clinical practices. Nursing Administration Quarterly, 30(1), 48-55. CHAPTER 2 STUDY 1: CARING INTERACTIONS IN SECONDARY PREVENTION PROGRAMS: A QUALITATIVE INQUIRY OF INDIVIDUALS WITH PARKINSON’S DISEASE Greviskes LE, Podlog L, Newton M, Dibble LE, Burns RD, Pillow W, Hall MS, Hammer C. Caring Interactions in Secondary Prevention Programs: A Qualitative Inquiry of Individuals with Parkinson's Disease. Journal of Geriatric Physical Therapy. 2018 Feb. doi: 10.1519/JPT.0000000000000151 CHAPTER 3 STUDY 2: CARING CLIMATE, ADHERENCE, AND QUALITY OF LIFE AMONG INDIVIDUALS WITH PARKINSON’S DISEASE: A MEDIATION ANALYSIS Introduction Approximately 315 per 100,000 individuals are currently diagnosed with Parkinson’s disease (PD) worldwide (Pringsheim, Jette, Frolkis, & Steeves, 2014), a figure that is projected to grow exponentially within the next decade (Wirdefeldt, Adami, Cole, Trichopoulos, & Mandel, 2011). With no cure, rising healthcare costs, and the average life expectancy increasing, finding cost-effective methods to improve the quality of life for patients with PD is imperative (Wirdefeldt et al., 2011). Quality of life relates to a number of areas, including mobility, activities of daily living, well-being, stigma associated with disease/disability, social support, cognitions, communication, and bodily discomfort (Bushnell & Martin, 1999; Jenkinson, Fitzpatrick, Peto, Greenhall, & Hyman, 1997; Peto, Jenkinson, Fitzpatrick, & Greenhall, 1995). One form of treatment aimed at improving quality of life and disability prevention is the use of physical therapy (PT) or secondary prevention programs (SPPs [exercise programs aimed at preventing disability and complications from disease]) (Frazzitta, Maestri, Uccellini, Bertotti, & Abelli, 2009; Munneke et al., 2010; Tomlinson et al., 2012). Participation in PT and SPPs has been shown to improve gait-related measures, 24 mobility, and motor control in patients with PD (see Tomlinson et al., 2012 for a review). For example, participants involved in PT and SPPs improved gait velocity on both the 2and 6-minute walk test and increased their average step length (Tomlinson et al., 2012). Furthermore, Baatile, Langbein, Weaver, Maloney, and Jost, (2000) found that individuals with PD who participated in an 8-week exercise program experienced increases in their overall quality of life scores with the greatest improvements observed on activities of daily living, mobility, cognition, and bodily discomfort (Baatile et al., 2000). Despite the evident benefits of PT/SPP programs, adherence rates are notoriously low (Ellis et al., 2013). Various barriers to rehabilitation adherence have been identified, with low outcome expectations, lack of time, and fear of falling recognized as the three most impactful barriers (Ellis, et al., 2013; Forkan, Pumper, Smyth, Wirkkala, Ciol, & Shumway-Cook, 2006). To better promote increased PT/SPP adherence and enhanced quality of life, it is instructive to examine relevant theories of behavior change. One prominent theory used to examine health behavior change is Social Cognitive Theory (SCT). Within SCT, Bandura (2004) suggests that an individual’s behavior influences and is influenced by personal factors and the social environment, all three of which influence one another in a reciprocal fashion (i.e., reciprocal determinism; Bandura, 2004). Behaviors refer to the nature, frequency, and intensity of actions taken by an individual, while personal factors include personality and cognitions. Additionally, the social environment pertains to environmental stimuli, the physical environment, and reinforcement contingencies. Of relevance to the present study is Bandura’s contention that environmental factors influence behaviors, which in turn, impact the person. As 25 described in detail below, the current study examines the contention that specific facets of the rehabilitation environment ̶ namely a caring climate ̶ influence adherence behaviors to PT/SPPs, which subsequently impact individuals with PD’s quality of life. The notion of caring has recently garnered attention in the PT literature. Caring has been identified by the American Physical Therapy Association (APTA) as a core value in PT practice. It is defined by the APTA as “… the concern, empathy, and consideration for the needs and values of others” (American Physical Therapy Association, 2014). Though caring has been identified as a core value relevant for clinical practice, scant empirical work has been conducted on the topic. Of the limited research to date, several qualitative studies have revealed a number of insights on the topic (Greenfield, 2006; Greenfield et al., 2008; Greenfield et al., 2010; Greviskes et al., 2018). In Greenfield and colleagues’ qualitative work, physical therapists concurred that caring was important for patients and that an ethic of care should ideally guide their decision making in practice (Greenfield, 2006; Greenfield et al., 2008). Additionally, Greviskes and colleagues (in press) revealed a number of implications associated with the receipt of caring, such as self-reported increases in rehabilitation attendance and effort. Participants commented that they worked harder because they knew the staff cared about them and their progress. Participants also detailed the importance of caring in terms of their attendance, stating that feeling cared for made them more motivated to “show up” to sessions. The aforementioned findings provide initial qualitative support for the link between caring environments and rehabilitation behaviors. Further quantitative research is needed, however, to elucidate the potential implications of caring for relevant behaviors such as PT/SPP adherence and patient-centered outcomes, such as quality of 26 life. In considering possible outcomes of caring rehabilitation environments, examination of research outside the PT/SPP context may be informative given the dearth of research on caring outcomes in rehabilitation settings. For instance, investigations conducted by Newton and colleagues revealed a number of positive implications of caring climates for physically active individuals (Newton, Magyar, Kim, Watson, GanoOverway, Fry, & Guivernau, 2007). Newton et al. (2007) defined the caring climate as “the extent to which individuals perceive a particular setting to be interpersonally inviting, safe, supportive and capable of providing the experience of being valued and respected” (p. 290). Several studies revealed that a caring climate was associated with increased self-efficacy, positive mental well-being, attendance, and engagement in youth physical activity and sport programs (Fry, Guivernau, Kim, Newton, Gano–Overway, & Magyar, 2012; Gano-Overway, Newton, Magyar, Fry, Kim, & Guivernau, 2009; Newton, et al., 2007). Additionally, in an exercise class setting, Brown and Fry (2009) discovered significant relationships between perceptions of a caring climate and increased effort, enjoyment, perceived competence, and commitment to future exercise, as well as lower levels of tension and social physique anxiety. Given the adaptive implications of a caring climate in physical activity settings, it is reasonable to suggest that a caring climate may also facilitate greater adherence and quality of life for Parkinson’s patients attending PT and SPPs. Considering the relative absence of research on caring in rehabilitation settings as well as evidence outside the PT/SPP setting highlighting the positive benefits of caring climates, additional research in this area is warranted. Furthermore, given the vital role 27 of adherence in enhancing patient-centered outcomes for those with PD, examination of adherence antecedents – including caring – is important to consider. Finally, as there is presently no cure for PD, the need for a better understanding of the potential impact of caring rehabilitation climates in improving the quality of life for individuals diagnosed with PD is evident. Grounded in SCT, the aim of the current study was threefold. The first aim was to examine whether caring – an environmental factor – was predictive of PT/SPP adherence (behavior). The second aim was to investigate whether adherence (behavior) was predictive of quality of life (personal factor). The third aim was to examine whether adherence mediated the caring climate/quality of life relationship (environmental factor/personal factor). Hypotheses Based on previous research showing a connection between caring and adherence (Greviskes et al., 2018) and adherence and quality of life (Baatile et al., 2000), it was hypothesized that caring would be directly related to adherence. Second, it was predicted that adherence would be directly related to quality of life. Third, it was hypothesized that adherence would mediate the relationship between caring and a composite quality of life score. Fourth, based on the multidimensional nature of quality of life and past research by Baatile and colleagues (2000) indicating adherence was more strongly related to some quality of life dimensions than others, we hypothesized that the indirect (mediating) effect of adherence would show significance for mobility, activities of daily living, cognitions, emotional well-being, and bodily discomfort subscales, but not for stigma, social support, or communication subscales. Stigma, social support, and communication 28 are likely unrelated to rehabilitation adherence due to the cognitive nature of these subscales. Conversely, the remaining quality of life subscales may be affected by physical changes that often occur following participation in PT/SPPs. Lastly, we hypothesized that adherence would be a significant mediator for the cognitive and emotional well-being components of QOL (i.e., cognitive and well-being subscales) as previous research has shown a connection between exercise participation and improved mood/ and well-being indicators (Fox, 1999; Penedo & Dahn, 2005; Tucker & Maxwell, 1992). Method Participants A total of 77 individuals participated in the current study. One participant was identified as an outlier and removed from the data set, having omitted greater than 35% of answers on the survey. Hence, the total sample was76 participants, including 44 males and 32 females with an average age of 70.8 (SD = 9.8, Range = 42). Table 3.1 includes participant demographics. Participants were recruited on a national level electronically through PD organizations and support groups, such as the American Parkinson’s Disease Association (Wisconsin Chapter), the National Parkinson Foundation, and the Michael J. Fox Foundation. Additionally, recruitment was conducted in-person at PT and SPP clinics in the metropolitan areas of Salt Lake City, Chicago, and Madison. In order to qualify for the study, patients must have a) been diagnosed by a physician with PD; b) received a score of lower than 8 on the Six-Item Cognitive Impairment Test, indicating satisfactory cognitive ability (CIT-6; Brooke & Bullock, 1999); and c) currently or previously enrolled in PT or SPP for a minimum 4-week period within the past year from 29 Table 3.1. Demographic Data Gender Race Ethnicity Male Female Caucasian Asian Hispanic/Latino Non-Hispanic/Latino Disease Rating: Doctor Given Disease Rating: Self-Assessment Rehabilitation Program Type Deep Brain Stimulation Status N 44 32 71 5 7 65 No Answer 4 Stage I 5 Stage 4 2 No Rating Given Stage I 66 51 Stage II 16 Stage III 6 Stage IV 2 No Answer 1 Physical Therapy Secondary Prevention Program Yes No 12 64 4 72 the date of study participation. The latter criteria were designed to ensure that participants spent sufficient time in PT/SPP upon which to base their responses, and had adequate ability to recall their rehabilitation experiences. There were no exclusions based on age, gender, ethnicity, or race. Procedures After receiving approval from the Institutional Review Board at a large mountain west university, participants were recruited via e-mail by the first author with the 30 assistance of various PD organizations and/or support of group administrators, or inperson at PT/SPP clinics. For online recruiting, a recruiting e-mail was sent to all participants outlining the study eligibility criteria and participation requirements. The email included a link that directed participants to the study survey. Upon clicking the web link, participants were informed that their participation was voluntary and that they could withdraw at any time without penalty. Participants were given an electronic consent document and indicated their understanding of participant rights and agreement to participate by continuing to complete the survey. The survey link then led participants to the CIT-6 in order to screen for cognitive ability. As no participants scored greater than 8 on the cognitive impairment test, none were excluded from study participation. The survey link then led participants to the following instruments: a demographic questionnaire, the Caring Climate Survey (Newton et al., 2007), a modified version of the Sport Injury Rehabilitation Adherence Scale (Brewer et al., 2000), and the Parkinson’s Disease Questionnaire (Peto et al., 1995). For in-person recruitment, participants were informed of the study and given a consent form. The participants were given the CIT-6 to screen for cognitive abilities as outlined above. Participants were then given the questionnaire battery in a private setting within the clinic or given the survey in a stamped and addressed envelope to complete at home and mail to the primary researcher. All participants, online or in person, were directed to answer the questions based on their current or most recent PT/SPP episode of care (i.e., an entire PT/SPP program). Upon completion of the surveys, participants’ involvement in the study was concluded. All responses were anonymous and confidential. Responses for the CIT-6 were not stored as they were only used for screening purposes. Responses to the questionnaires were stored 31 in a locked file cabinet and on a password-protected computer in a locked office and available only to the researchers. Measures Demographic Questionnaire A demographic questionnaire was administered to all participants. Questions addressed age, race, ethnicity, gender, age of disease onset, current stage of disease, type of program (PT vs. SPP), use of medications (prescribed or unprescribed), as well as any other treatment modalities undertaken by participants in addition to their PT regimen. Complete demographic details can be found in Table 3.1. Caring Climate Survey Newton and colleagues (2007) developed the Caring Climate Survey (CCS) to measure caring behaviors in the physical activity setting. The scale includes 13 items describing caring behaviors that participants rate on a 5-point Likert-type scale from 1 (always) to 5 (never). According to Newton and colleagues (2007), the measure requires the stem to correspond with the setting in which data collection occurs. As such, several minor word modifications were made to the survey stem and several items. Specifically, the stem indicating “On this team” was changed to “In this clinic…” Additionally, the word “leader” was changed to “rehabilitation practitioner” and “kids” was amended to “patients.” Modified versions of the CCS have been used successfully in several studies (Brown & Fry, 2013; Brown, Fry, & Little, 2013; Gano-Overway, 2013). The CCS has shown high internal consistency (α = .82 - .92) and validity (face, construct, concurrent, 32 convergent, discriminant) in several studies (Fry et al., 2012; Gano-Overway et al., 2009; Newton et al., 2007). Sample items include, “In this clinic, the rehabilitation practitioners listen to the patients” and “In this clinic, patients feel comfortable.” As indicated, participants were directed to answer questions regarding their current or most recent PT/SPP clinic experience. The current study showed a low to moderate level of internal consistency (α = .66). Sport Injury Rehabilitation Adherence Questionnaire (SIRAS) The SIRAS was developed for use in rehabilitation clinics as a practitioner-rated measure of adherence (Brewer et al., 2000). It includes three questions assessing client adherence by measuring the intensity of exercises, frequency in which clients follow practitioner directions and advice, and receptiveness to changes in the program. To respond to each question, practitioners answer on a Likert-type scale anchored at 1 and 5 to indicate minimum to maximum (intensity), never to always (frequency), and very unreceptive to very receptive (receptiveness) for each question, respectively. An overall score is formed by adding the three ratings together to obtain a score out of 15 possible points. For the current study, the SIRAS was modified to a self-report version of the questionnaire. Participants were given the same questions and rating scale; however, the subject stems were changed from: “Circle the number that best indicates the intensity with which this patient completed rehabilitation exercises” to “ Circle the number that best indicates the intensity with which you completed rehabilitation exercises”; “How frequently did this patient follow your instructions or advice?” to “How frequently did you follow your practitioner’s instructions or advice?” ; and “How receptive was this 33 patient to changes in the rehabilitation program?” to “How receptive were you to changes in the rehabilitation program?” The original version of the SIRAS has consistently been found to have satisfactory levels of construct validity (rater-agreement index values from 0.83 – 0.95) and internal consistency (α = 0.82; Brewer et al., 2000; Brewer et al., 2002; Kolt, Brewer, Pizzari, Schoo, & Garrett, 2007). The SIRAS has been suggested for use as a generic measure aimed at assessing rehabilitation adherence beyond sport injury rehabilitation settings (Kolt et al., 2007). The current study showed a moderate level of internal consistency (α = .75). Parkinson’s Disability Questionnaire (PDQ) The PDQ was developed to measure quality of life for patients with PD (Bushnell & Martin, 1999; Jenkinson et al., 1997; Peto et al., 1995). The measure includes 39 items answered on a 5-point Likert-type scale from 1 (never) to 5 (always). The PDQ measures eight dimensions of overall quality of life, including mobility, activities of daily living, well-being, stigma, social support, cognitions, communication, and bodily discomfort. Sample items from each dimension include the following: “had difficulty getting around in public places” (mobility); “had difficulty showering or bathing” (activities of daily living); “felt isolated or lonely” (well-being); “felt embarrassed in public” (stigma); “had problems with close personal relationships” (social support); “felt your memory was failing” (cognitions); “had difficulty speaking” (communication); “had painful muscle cramps of spasms” (bodily discomfort). Each dimension has a possible score of 0 to 100, with scores closer to 0 indicating a better quality of life. An overall composite (average) score can be assessed by adding together the eight dimension scores and dividing by 34 eight. Given our interest in assessing whether adherence might mediate relationships between caring and QOL – both as a composite construct and its constitutive parts – both average and subscale scores were calculated and analyzed. The PDQ has shown acceptable internal consistency (Cronbach’s α = 0.84) and construct validity (Bushnell & Martin, 1999; Peto, et al., 1995). The current study showed a high level of internal consistency (α = .96). Analyses Data were entered into SPSS and cleaned and screened for outliers and missing data during preliminary analysis. Malhalanobis distance was used to identify outliers and one case was identified as an extreme distance. Upon further inspection, the participant omitted several answers on several surveys and was removed from the sample. Data were assessed for normality, linearity, homoscedasticity, independence of errors, and multicollinearity. Several assumptions were violated (normality, linearity, and heteroscedasticity), which led researchers to choose robust statistical methods to account for such violations discussed in more detail below. Data analysis took place in several stages. First, we examined Pearson product correlations between caring and adherence, adherence and quality of life, and caring and quality of life to assess the direction and strength of association among variables. Second, we further explored relationships of interest using mediation analyses. Specifically, in order to test the mediation model proposed in this study, the Preacher and Hays (2008) bootstrapping procedure was used. This bootstrapping procedure allows researchers to estimate both direct and indirect effects in models and minimizes issues associated with multivariate nonnormality, a 35 prevalent concern when small sample sizes are used (Preacher & Hayes, 2008). The model was assessed using the default 1000 iterations and 95% Confidence Intervals (CI). For the current study, caring was the independent variable, adherence the mediator, and quality of life the dependent variable. The bootstrapping procedure assessed for various effects within the model, including 1) the indirect effect, which measures the amount of mediation within the model by measuring the relationship between the independent variable (caring) and mediator (adherence) and combining it with the measurement of the relationship between the mediator (adherence) and the dependent variable (quality of life); 2) the direct effect, which measures the relationship between the independent variable (caring) and the dependent variable (quality of life) with the addition of the mediating variable; and 3) the total effect, which measures the total relationship between the independent variable (caring) and the dependent variable (quality of life; i.e., TE = DE + IE). If the indirect effect is statistically different from 0, a mediation is confirmed. Data analysis was conducted using SPSS with the Preacher and Hayes bootstrap macro and an a priori alpha level of p < .05. Results Overall, the mean scores for the CCS were 4.6 (SD = .23), denoting high perceptions of a caring climate, the SIRAS were 12.8 (SD = 1.74), corresponding to high levels of adherence, and the PDQ-39 were 17.32 out of a possible 100 (SD = 11.31), which indicates a low level of disability due to PD. Table 3.2 includes descriptive statistics for all study variables. Table 3.3 is a correlation matrix that provides Pearson product correlation coefficients between the CCS, the SIRAS, and the PDQ-39 composite 36 Table 3.2 Descriptive Statistics CCS SIRAS N 76 75 Mean 4.6144 12.7733 Std. Deviation .22523 1.73652 PDQ Composite 75 17.3243 11.31430 PDQ Mobility 75 20.2333 17.06592 PDQ Activities of Daily Living 76 18.1469 17.98538 PDQ Emotional Wellbeing PDQ Stigma 76 20.1206 15.50669 76 7.8947 13.55423 PDQ Social Support 76 11.1842 13.71351 PDQ Cognitions 76 27.3849 14.46861 PDQ Communication 76 13.0482 13.90014 PDQ Bodily Discomfort PDQ Stigma 76 19.6272 13.79103 76 7.8947 13.55423 Table 3.3. Correlations Between Caring, Adherence, and Quality of Life a CCS SIRAS PDQ Composite CCS SIRAS 1 -.082 -.082 1 .031 -.119 PDQ Composite PDQ Mobility PDQ Activities of Daily Living PDQ Emotional Well-being PDQ Stigma .031 .135 .079 .060 -.102 -.119 -.172 -.115 -.153 -.048 1 .867** .865** .860** .716** PDQ Social Support .089 -.103 .583** PDQ Cognitions PDQ Communication -.001 -.056 -.042 -.117 .661** .703** PDQ Bodily Discomfort -.186 -.015 .693** a Values with (*) denote significance at p < .05; values with (**) denote significance at p < .01 37 and subscales. The correlation analyses yielded no significant findings with regard to the hypotheses. Given the nonsignificant correlation analysis, mediation analyses were not necessary as no relationship emerged between variables of interest. Additional correlation analyses were completed to assess if any demographic variables might have influenced the results, but no relationships were noted. However, as part of this dissertation, mediation analyses were conducted in order to follow through with a priori hypotheses. The bootstrap analysis yielded a nonstatistically significant indirect effect ([IE] IE = .74, 95% confidence interval [CI] = -.44 to 7.86, p = .564, r2 = ). Bootstrap procedures also yielded a nonstatistically significant direct effect ([DE] DE = .006), 95% CI = -12.69 to 12.70, p = .999) and a nonstatistically significant total effect ([TE] TE = .75, 95% CI = -11.86 to 13.36, p = .906). As previously mentioned, correlations with all PDQ subscales were found to be nonsignificant; however, for the purpose of this dissertation and in order to follow through with a priori hypotheses, Table 3.4 provides the results of the IE, DE, and TE with respective confidence intervals for each PDQ subscale. Discussion Building on previous qualitative research (Greviskes et al. in press), the primary aim of the current study was to quantitatively examine whether rehabilitation adherence mediated the relationship between a caring climate and quality of life among individuals with Parkinson’s disease. It was hypothesized that caring would be directly related to adherence, adherence would be directly related to quality of life, and adherence would serve as a mediator of the relationship between a caring climate and quality of life. Additionally, it was hypothesized that the indirect (mediating) effect of adherence would 38 Table 3.4. Mediation Model PDQ Subscale Effects Indirect Effect (CI 95%) .74 (.44, 7.86) Direct Effect (CI 95%) .006 (-.472, 8.44) Total Effect (CI 95%) .75 (- 11.86, 13.36) 1.514 (-882, 15.289) .767 (-.1.66, 10.69) 8.15 (-10.74, 27.03) 9.66 (-9.20, 28.53) Activities of Daily Living Emotional Well- .890 (-1.06, 7.56) Being Stigma .299 (-.6242, 3.5948) Social Support .517 (-.83, 4.39) 3.747 (-15.868, 23.36) 3.06 (-13.83, 19.945) 4.514 (-15.017, 24.046) 3.94 (-12.96, 20.848) -7.45 (-22.28, 7.39) -7.15 (-21.85, 7.56) 3.51 (-11.46, 18.47) 4.02 (-10.85, 18.90) Cognitions .235 (-.147, 4.18) -.76 (-16.70, 15.19) -.521 (-16.32, 15.28) Communication .659 (-.995, 8.278) -5.34 (-20.51, 9.83) -4.685 (19.81, 10.44) Bodily Discomfort .156 (-.896, 3.089) -11.85 (-26.80, 3.09) -11.70 (-26.49, 3.101) PDQ Composite Mobility show significance for mobility, activities of daily living, emotional well-being, cognitions, and bodily discomfort subscales, but not for stigma, social support, or communication subscales. As none of the hypothesized relationships were found to be significant, reasons for the nonsignificant findings are postulated below. It is possible the nonsignificant relationships found in the current study accurately represent participants’ perspectives. The nonsignificant findings may however also be the product of methodological issues regarding the validity of the CCS and scale ceiling effects. As there are currently no validated or standardized measures for caring formulated specifically for use within the rehabilitation context, we modified the CCS, originally developed for use in sport and physical activity settings (Newton et al., 2007). While results from qualitative studies (Greenfield, 2010; Greviskes et al., 2018) highlight similarities between characteristics of a caring rehabilitation climate and sport/physical 39 activity settings, it is possible the CCS does not fully capture the essence of caring in the former setting. Another possible explanation for the absence of any significant findings may relate to ceiling effects in the CCS and SIRAS scales. While the CCS has been used in several studies (Fry et al., 2012; Gano-Overway et al., 2009; Newton et al., 2007), ceiling effects (when a large concentration of participant scores are near the upper limit of the measurement) have been demonstrated. The current study showed similar issues with participants reporting average scores of 4.6 out of a 5 (with 5 indicating the highest degree of caring possible). Ceiling effects can be problematic because the lack of variability decreases the likelihood that the instrument accurately measured the intended domain, in this case, caring. A lack of variability leading to validity concerns makes it difficult to discern whether a relationship exists between caring and any other variable, even with robust statistical techniques. Similarly, ceiling effects observed in reported scores on the SIRAS (i.e., adherence) measure (mean of 12.8 on a 15-point scale) may have impacted results regarding relationships between caring and adherence, adherence and quality of life, and the mediating effects of adherence. Ceiling effects on the SIRAS scale are not entirely surprising, considering past studies in which scholars have suggested a tendency among participants to overinflate self-reported adherence scores. Such over-inflation may be related to the social desirability of reporting higher levels of advantageous behaviors such as adherence. Nonsignificant relationships evident between adherence and quality of life were surprising given previous literature linking adherence and quality of life (Baatile et al., 2000; Frazzitta, et al., 2009; Munneke et al., 2010; Tomlinson et al. 2012). Not only was 40 adherence unrelated to an overall composite quality of life score, but no significant relationships emerged with any quality of life domains measured by the PDQ. The multidimensional nature of PD may have been influential with regard to the nonsignificant findings in the current study. Each case of PD is different and there is no common pathway or trajectory for the disease, which makes studying concepts, such as quality of life or disability ratings, particularly challenging. For example, while one individual may experience cognitive deficits, another may not. Similarly, while one individual may experience trouble with activities of daily living, such as brushing one’s teeth, such difficulties may be completely absent in another person. Given the highly variable nature of PD, it is, in retrospect, somewhat logical that variables such as adherence to rehabilitation might not influence quality of life among individuals experiencing an array of diverse symptoms. The cross-sectional design used in the current study may have also been influential with regard to the nonsignificant findings. Due to the unique set of symptoms and progression of the disease for each individual, measuring quality of life for many individuals at one point in time may result in inconsistent findings. For example, if an individual in the advanced stages of PD feels cared for in their rehabilitation program and has a high level of adherence, their quality of life may still be low compared to another person in the beginning stages of the disease regardless of their perceptions of caring and level of adherence. Based on these inconsistencies, studying quality of life for individuals with PD may be better suited for longitudinal study. A longitudinal study would allow for progression of disability and dysfunction to be tracked and the change or lack of change to be analyzed rather than measuring individuals’ quality of life at one given time. As 41 there is no cure for PD and slowing the progression of disability and dysfunction are primary goals of treatment, assessment of change in disability level and dysfunction over time using a longitudinal design seems like a superior method to study this population. Limitations and Future Directions In addition to limitations cited previously, several others are worthy of mention. First, the sample was quite homogeneous. Although participant demographics in the current study are consistent with those diagnosed with PD in the United States (Wright Willis, Evanoff, Criswell, & Racette, 2010), researchers may focus on gathering data from underrepresented groups in order to further generalize the findings. Secondly, as mentioned above, the CCS exhibited a ceiling effect skewed towards “feeling cared for.” Surveying a larger sample may help to increase the variance. Along these lines, researchers may seek to recruit participants that discontinued or did not adhere to rehabilitation programs in order ascertain a sample with greater variability in adherence. Third, the data were entirely self-report. As with any self-report data, there are issues of recall bias and social desirability. The use of additional measurement techniques may be valuable in obtaining more objective data. For example, using practitioner ratings of adherence or attendance records to corroborate participants self-report data may be useful in establishing accuracy and truthfulness. Lastly, researchers may wish to investigate different personal and/or environmental variables that exist within the SCT reciprocal determinism framework not discussed in the current study, for example, social support (an environmental factor) or personality (a personal factor). 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The development and validation of a short measure of functioning and well being for individuals with Parkinson's disease. Quality of Life Research, 4(3), 241-248. Preacher, K. J., & Hayes, A. F. (2008). Asymptotic and resampling strategies for assessing and comparing indirect effects in multiple mediator models. Behavior Research Methods, 40(3), 879-891. Pringsheim, T., Jette, N., Frolkis, A., & Steeves, T. D. (2014). The prevalence of 45 Parkinson's disease: A systematic review and meta-analysis. Movement Disorders, 29(13), 1583-1590. Tomlinson, C. L., Patel, S., Meek, C., Clarke, C. E., Stowe, R., Shah, L., ... Ives, N. (2012). Physiotherapy versus placebo or no intervention in Parkinson’s disease. Cochrane Database System Review, 8(8). doi: 10.1002/14651858.CD002817.pub2. Tucker, L. A., & Maxwell, K. (1992). Effects of weight training on the emotional wellbeing and body image of females: Predictors of greatest benefit. American Journal of Health Promotion, 6(5), 338-371. Wirdefeldt, K., Adami, H. O., Cole, P., Trichopoulos, D., & Mandel, J. (2011). Epidemiology and etiology of Parkinson’s disease: A review of the evidence. European Journal of Epidemiology, 26(1), 1. Willis, A. W., Evanoff, B. A., Lian, M., Criswell, S. R., & Racette, B. A. (2010). Geographic and ethnic variation in Parkinson disease: A population-based study of US Medicare beneficiaries. Neuroepidemiology, 34(3), 143-151. CHAPTER 4 STUDY 3: CARING, TRIPARTITE EFFICACY, AND ADHERENCE TO REHABILITATION PROGRAMS AMONG INDIVIDUALS WITH PARKINSON'S DISEASE: A MULTIPLE MEDIATION ANALYSISi Introduction For individuals with Parkinson’s disease (PD), physical therapy (PT) and secondary prevention programs (SPPs [exercise programs aimed at slowing the progression of disability due to disease]) are often prescribed as a treatment modality1. With rising healthcare costs and no cure available for PD, treatments such as PT and SPPs are critically important in enhancing quality of life and diminishing disability1-3. Unfortunately, adherence to PT and SPPs is particularly low for individuals with PD 4,5. Common barriers to rehabilitation adherence include (i.e., PT and SPPs) low outcome expectations, tightness in chest, lack of time, perceived health, discomfort with exercise, depression, bad weather, and fear of falling5. Given the plethora of barriers to adherence, examining relevant behavior change theories in order to promote rehabilitation adherence can be instructive. i This chapter has been prepared for submission to the Journal of Geriatric Physical Therapy 47 One theoretical framework used extensively to examine health behaviors is Social Cognitive Theory (SCT). According to Bandura7, SCT describes how learning and behavior change are influenced by the relationship between personal factors, environmental factors, and behavior. Bandura developed the notion of reciprocal determinism, suggesting that personal factors, environmental factors, and behavior influence one another in a reciprocal nature. Personal factors include personality and cognitions, such as self-efficacy, whereas environmental factors include environmental stimuli, the physical environment, and reinforcement contingencies, such as social support. Behavior refers to the nature, frequency, and intensity of actions of the individual, for example, rehabilitation adherence. With regard to the current study, the reciprocal nature of SCT highlights the influence of environmental factors (e.g., social support, patient-practitioner relationships) on personal factors (motivation, efficacy, attributions), which can subsequently impact behaviors (e.g., rehabilitation adherence). Recent evidence suggests that a caring climate, an environmental factor, and tripartite efficacy, a personal factor, may have important implications regarding the extent to which individuals adhere to physical education8-10 and rehabilitation programs1113 . With regard to a caring climate, Greviskes and colleagues found that participants self- reported a greater likelihood of attending and putting forth greater effort in their SPP sessions when they felt cared for by the program staff, that is, when program staff communicated openly, showed personal interest, displayed benevolence, and provided undivided attention12. Given the qualitative approach used in this study, quantitative evidence is needed to further support hypothesized relations between a caring climate (environmental factor) and rehabilitation adherence (behavior) among individuals with 48 PD. Consistent with SCT assumptions, further investigation is also needed to examine whether personal factors mediate the caring climate (environmental factor)-adherence (behavior) relationship. One important personal factor that has been shown to influence adherence to rehabilitation is self-efficacy. Self-efficacy (SE) is defined as one’s belief in his or her own capacity to or capability of completing a specific task or set of tasks7,14,15. SE has been linked to several important outcomes in the PT setting including increased adherence, as well as perceptions of functionality and health status16-18. Specifically, Carlson and colleagues examined patients in cardiac rehabilitation programs and found those with higher levels of SE were more likely to adhere to their prescribed programs18. Additionally, Moon and Backer revealed that patients with higher levels of SE within an orthopedic rehabilitation setting consistently completed more exercises and were more engaged (i.e., participated in longer sessions and more repetitions of exercises) during PT sessions16. Recently, scholars have articulated two other efficacy constructs – namely, other efficacy (OE) and relation inferred self-efficacy (RISE)19 – both of which have been found to have important implications in various settings including sport20,21, physical activity22, education23, and more recently, in rehabilitation contexts13. OE is defined as one’s belief in a significant other’s ability to perform specific behaviors19. In a PT context, patients who believe their physical therapist to be knowledgeable and capable of successfully facilitating their rehabilitation success would be said to have high OE. RISE is defined as one’s estimation of a significant other’s belief in his or her ability to perform specific behaviors19. For a patient in the PT setting, the belief that one’s practitioner held 49 positive beliefs about his/her ability to complete rehabilitation exercises would characterize high levels of RISE According to Lent and Lopez, the three forms of efficacy, known as tripartite efficacy, are posited to act in a reciprocal fashion similar to that of SCT19. That is, increases in one form of efficacy are posited to lead to increases in other efficacy types. For example, high perceptions of RISE (i.e., the individual thinks their practitioner believes in his/her abilities), or increases in OE (the belief that one’s practitioner is competent), are suggested to facilitate perceptions of SE19. As previously mentioned, tripartite efficacy would be considered a personal factor within SCT, and as such, may influence a key behavioral factor impacting rehabilitation outcomes − adherence to PT/SPPs. To the authors’ knowledge, only one study to date has examined tripartite efficacy within a rehabilitation setting. Jackson and colleagues examined tripartite efficacy constructs, patient satisfaction, engagement, and relationship appraisals among individuals in orthopedic rehabilitation programs13. Researchers discovered that when the three forms of efficacy were increased, patients were more satisfied with their programs and more likely to adhere to their rehabilitation program. Although such findings indicate a likely relationship between tripartite efficacy and rehabilitation adherence, further work is needed to examine the extent to which these results are generalizable to a PD population. Importantly, as mentioned above, individuals with PD have notoriously low SE in PT/SPPs given fears of falling, low outcome expectations, and other barriers to participation such as discomfort with exercise, low interest, and weakness6,24. Consequently, it is important to examine the extent to which tripartite efficacy constructs may help explain variability in rehabilitation adherence. 50 In addition to anticipated relationships between caring climates and adherence as well as tripartite efficacy and adherence, it seems likely that tripartite efficacy may mediate the relationship between a caring climate and rehabilitation adherence. Specifically, several caring behaviors identified previously, such as practitioners paying attention to patients’ exercise technique, providing exceptional service, patients feeling personal valued, and open communication, all seem logically related to potential increases in perceptions of SE, OE, and RISE. For example, the practitioner who pays special attention to a patient’s exercise technique would presumably increase the latter’s SE as the knowledge and feedback received could enhance one’s belief in successfully completing future rehabilitation exercises. Similarly, in instances where a practitioner provides exceptional service or clear and open communication, a patient may be more likely to have higher OE perceptions, since the patient views their practitioner as capable of effectively guiding her through the multitude of rehabilitation challenges and demands. Finally, if a patient feels cared for, she may also believe that her practitioner has confidence in her abilities (RISE), since busy practitioners would likely demonstrate greater investment (e.g., attentiveness, exceptional service) in patients whom they feel are capable of being successful in their rehabilitation (“why would the practitioner go ‘above and beyond’ with the level of care provided unless she believed in my abilities?”). Given that, a) SCT postulates highlighting connections between environmental, personal and behavioral factors, b) preliminary findings linking caring climates and adhernece12, c) connections between tripartite efficacy and adaptive rehabilitation outcomes13, and d) the intuitive appeal of tripartite efficacy constructs as mediators of the caring climate/rehabilitation adherence relationship, the purpose of this study was 51 threefold. First, we sought to examine relationships between a caring climate and the three forms of efficacy within the tripartite model. The second study aim was to examine the relationship between the three forms of efficacy within the tripartite model and adherence to PT/SPP exercises. The third and final objective was to determine if tripartite efficacy mediated the relationship between caring and adherence. In addition to theoretical advances, the current study has potential practical implications regarding adherence promotion and subsequent patient-centered outcomes. Knowledge of pivotal factors influencing rehabilitation adherence can help direct intervention efforts aimed at improving mobility and quality of life among patients with PD. Several hypotheses were advanced: 1) A caring climate would have a direct positive relationship with adherence. 2) A caring climate would have a direct positive relationship with SE, OE, and RISE (tripartite efficacy). 3) SE, OE, and RISE (tripartite efficacy) would each have a direct positive relationship with adherence. 4) SE, OE, and RISE would mediate the relationship between caring and adherence. Method Participants Participants for this study included a total of 77 individuals (Female = 33, Male = 44), with an average age of 69.3 (SD = 10.1, range = 44 years). For a review of demographic variables, see Table 4.1. Participants were recruited on a national level 52 Table 4.1 Demographic Data N Gender Race Ethnicity Disease Rating: Doctor Given Male 44 Female 33 Caucasian 71 Asian 5 African American 1 Hispanic/Latino 5 Non-Hispanic/Latino No Answer 4 Stage 2 2 Stage 3 2 Stage 4 1 No Rating Given No Answer Disease Rating: Self-Assessment Rehabilitation Program Type Deep Brain Stimulation Status 68 70 2 Stage I 45 Stage II 23 Stage III 4 Stage IV 4 No Answer 1 Physical Therapy 8 Secondary Prevention Program 69 Yes 4 No 73 53 electronically through PD organizations and support groups, such as the American Parkinson's Disease Association, American Parkinson's Disease Association – Wisconsin Chapter, the National Parkinson Foundation, and the Michael J. Fox Foundation. Additionally, recruitment was conducted in-person at physical therapy clinics in the greater Salt Lake City, Madison, and Chicago metropolitan areas. In order to qualify for the study, patients must have a) been diagnosed by a physician with PD; b) received a score of less than 8 on the Six-Item Cognitive Impairment test (CIT-6), indicating satisfactory cognitive ability25; and c) been currently or previously enrolled in PT or an SPP for a minimum 4-week period within the past year from the date of study participation. The latter criteria were implemented to ensure that participants had spent sufficient time in PT/SPP upon which to base their responses, and had adequate ability to recall their rehabilitation experiences. There were no exclusions based on age, gender, ethnicity or race. Procedures After receiving approval from the Institutional Review Board at a large mountain west university, participants were recruited via e-mail by the primary researcher with the assistance of a PD organization and/or support group administrator, or in person at PT/SPP clinics. For online recruiting, a recruiting e-mail was sent to all participants outlining the study eligibility criteria and participation requirements. The e-mail included a link that directed participants to the study survey. Upon clicking the web link, participants were informed that their participation was voluntary and they could withdraw at any time without penalty. Participants were given an electronic consent document, 54 whereby continued participation in the survey indicated consent for study participation. The link then led participants to the CIT-6, a screening test for cognitive ability. Participants scoring higher than 8 (indicating insufficient cognitive ability) would have been excluded from participation; however, there were no individuals excluded based on cognitive ability. The survey link continued to the following instruments: a demographic questionnaire, the Caring Climate Survey26, the Tripartite Efficacy Items13, and a modified version of the Sport Injury Rehabilitation Adherence Scale27. For in-person recruitment, participants were informed of the study and given a consent form. The participants were given the CIT-6 to screen for cognitive abilities as outlined above. Those meeting the inclusion criteria were given the questionnaire battery, highlighted previously, in a private setting within the clinic or given a survey along with an addressed/stamped envelope to complete at home and mail to the primary researcher. All participants, online or in person, were directed to answer the questions based on their current or most recent PT/SPP episode of care. Upon completion of the surveys, participants’ involvement in the study was concluded. All responses were anonymous and confidential. Measures Demographic Questionnaire A demographic questionnaire was administered to all participants. Questions addressed age, race, ethnicity, gender, age of disease onset, current stage of disease, type of program (PT vs. SPP), use of medications (prescribed or unprescribed), as well as any other treatment modalities undertaken by participants in addition to their PT regimen. 55 Caring Climate Survey Newton and colleagues developed the Caring Climate Survey (CCS) to measure caring behaviors in the physical activity setting26. The scale includes 13 items describing caring behaviors that participants rate on a 5-point Likert-type scale from 1 (always) to 5 (never). Consistent with Newton and colleagues’ suggestion that the CCS be modified to suit the context in question26, several minor word modifications were made to the survey stem and items. Specifically, the stem used was “In this clinic…” Additionally, in the items the word “leader” was changed to “rehabilitation practitioner” and “kids” was amended to “patients.” Modified versions of the CCS have been used successfully in several studies28-30, and the CCS has shown high internal consistency (α = .82 - .92) and validity (face, construct, concurrent, convergent, discriminant) in previous work8-10, 31. Sample items include, “In this clinic, the rehabilitation practitioners listen to the patients” and “In this clinic, patients feel comfortable.” Patients were directed to answer questions regarding their current or most recent PT/SPP clinic experience. The Cronbach’s alpha for the current study was a = .91, indicating strong internal consistency. Tripartite Efficacy Measures In the absence of standardized tripartite efficacy measures, items developed by Jackson and colleagues in previously published rehabilitation research were used in the current investigation13. The three efficacy scales demonstrated high internal consistency (α SE= .93; α OE = .93; α RISE = .92) and content validity as rated by experts in the work by Jackson et al. (2012). In Jackson et al.13 as well as the current study, the SE and RISE items included the same eight items; however, the stem was changed to reflect the 56 appropriate form of efficacy. The SE stem was “Please honestly rate your confidence in your ability to...” Example items include, “use correct technique for all exercises” and “reach your program goals.” The RISE stem was slightly amended to, “Please honestly rate your perception of your practitioner’s confidence in your ability to…” Eight additional items were used to rate OE. The stem for OE was, “Please honestly rate your confidence in your practitioner’s ability to...” Example items include, “help you overcome any barriers you face in your program” and “develop an effective program for you and make effective adjustments when needed.” All items were answered using an 11-point scale ranging from 0 (not at all confident) to 10 (complete confidence). Responses for each scale were averaged. For all items, participants were directed to think back to their most recent episode of care and reflect upon the healthcare practitioner (physical therapist, PT assistant, exercise specialist, PT student, exercise class leader) they worked with most often. The Cronbach’s alphas for the current study for SE, OE, and RISE showed a high level of internal consistency at a = .84, a = .94, and a = .94 respectively. Sport Injury Rehabilitation Adherence Questionnaire (SIRAS) The SIRAS was developed for use in rehabilitation clinics as a practitioner rated measure of adherence27. It includes three questions assessing client adherence by measuring the intensity of exercises, frequency in which clients follow practitioner directions and advice, and receptiveness to changes in the program. To respond to each question, practitioners answer on a Likert-type scale anchored at 1 and 5 to indicate minimum to maximum (intensity), never to always (frequency), and very unreceptive to 57 very receptive (receptiveness) for each question, respectively. An overall score is formed by adding the three ratings together to obtain a score out of 15 possible points. For the current study, the SIRAS was modified to a self-report version of the questionnaire. Participants were given the same questions and rating scale; however, the subject stems were changed from “Circle the number that best indicates the intensity with which this patient completed rehabilitation exercises” to “ Circle the number that best indicates the intensity with which you completed rehabilitation exercises,” “How frequently did this patient follow your instructions or advice?” to “How frequently did you follow your practitioner’s instructions or advice?” , and “How receptive was this patient to changes in the rehabilitation program?” to “How receptive were you to changes in the rehabilitation program?” The original version of the SIRAS has consistently demonstrated satisfactory levels of construct validity (rater-agreement index values from 0.83 – 0.95) and internal consistency (α = 0.82)27,32,33. The current study showed a moderate level of internal consistency (a = .73). Analyses Data were entered into SPSS, cleaned, and screened for outliers and missing data during preliminary analysis. Mahalanobis distance was used to identify outliers, two of which were identified following review of the raw data and subsequently removed from the data set. Data were assessed for normality, linearity, homoscedasticity, independence of errors, and multicollinearity. As multiple assumptions were violated (normality, linearity, homoscedasticity), robust statistical methods, discussed below, were adopted to help mitigate the effects of such violations. First, to address hypotheses 1-3, researchers 58 examined the Pearson product correlations between caring and tripartite efficacy (SE, OE, RISE), tripartite efficacy variables and adherence, and finally, caring and adherence. In order to further explore relationships between variables, a multiple meditation analysis was used to assess hypothesis 4. Specifically, in the multiple mediation model, caring was the independent variable and adherence was the dependent variable. Self-efficacy, other efficacy, and RISE served as mediators between the independent and dependent variable (see Figure 1). In order to assess the multiple mediation model in this study, the bootstrapping procedure outlined by Preacher and Hayes was utilized34. This bootstrapping procedure allows researchers to estimate direct and indirect effects in models with multiple proposed mediators and limits problems that may arise due to multivariate nonnormality, an issue often present in research with multiple mediators and small sample sizes34. The model was assessed using the default 1000 iterations and 95% Confidence Intervals (CI). The bootstrapping procedure assessed the significance of various paths within the model. The following coefficients were reported: 1) the total effect c path, which measured the total relationship between the independent variable (caring) and the dependent variable (adherence) without the influence of any mediators; 2) three separate a path coefficients, which measured relationships between the independent variable (caring) and each mediating variable (SE, OE, and RISE); 3) three separate b path coefficients, measuring the relationship between the mediating variables (SE, OE, and RISE) and the dependent variable (adherence); and finally, 4) the direct effect c path, measuring the relationship between the independent variable (caring) and the dependent variable (adherence) with the addition of the mediating variables (see Figure 4.1). To confirm mediation, there must be significance between caring and 59 adherence (total effect) and the effect must remain significant with the addition of SE, OE, and RISE as mediators (direct effect). Data analysis was conducted using SPSS with the Preacher and Hayes bootstrap macro. An a priori alpha level of p < .05 was used in the current study. To confirm mediation, there must be significance between caring and adherence (total effect) and the effect must remain significant with the addition of SE, OE, and RISE as mediators (direct effect). Data analysis was conducted using SPSS with the Preacher and Hayes bootstrap macro. An a priori alpha level of p < .05 was used in the current study. Results Overall, participants had mean scores of 4.6 (SD = .39) on the CCS, indicating high perceptions of caring. Similarly, mean scores of 8.3 (SD = .81) on SE, 8.9 (SD = 1.0) on OE, and 8.8 (SD = .88) on RISE, were indicative of high perceptions of tripartite 60 efficacy. Self-reported adherence levels (SIRAS scores) were also elevated with a mean score of 12.8 (SD = 1.8). Table 4.2 provides Pearson product correlation coefficients between the CCS, SE, OE, RISE, and the SIRAS scales. Consistent with the first hypothesis, a caring climate (CCS) had a moderate positive relationship with selfreported adherence (SIRAS). Moreover, in line with hypothesis two, a caring climate also demonstrated moderate positive relationships with SE, OE, and RISE (p < .05). Finally, as predicted in the third hypothesis, SE, OE, and RISE all displayed a moderate positive relationship with self-reported adherence (p < .05). Although no specific hypotheses were forwarded regarding relationships among tripartite efficacy variables, it was evident that SE, OE, and RISE were all moderately positively correlated (p < .05). Given significant relationships between variables of interest, a multiple mediation analysis was conducted. Figure 4.2 shows relationships between a caring climate, adherence, and the mediating effects of SE, OE, and RISE. The mediation analyses revealed that some, but not all paths were significant. The a paths between CCS and SE (F [1, 75] = 26.90, p < .05, R2 = .30; b = 1.13, t [75] = 5.19, p < .05),CCS and OE (F [1, 75] = 39.2, p < .01, R2 = .46; b = 1.78, t [75] = 6.26, p < .05), and CCS and RISE were all statistically significant Table 4.2 Correlation Matrix SIRAS CCS Self-Efficacy .428*** .310*** CCS Self-Efficacy Other-Efficacy a All values significant at p < .001.*** .548*** OtherEfficacy .409*** .680*** .585*** RISE .421*** .556*** .514*** .808*** 61 Figure 4.2. Relationship between caring, tripartite efficacy, and adherence. (* denotes p < . 05; ** denotes p < .01). (F [1, 75] = 20.27, p <.05, R2 = .31; b = 1.25, t [75] = 4.50, p < .05). The b paths were not significant for any of the efficacy variables (F [4, 72] = 2.89, p < .05, R2 = .23; SE, b = .073, t [72] = .197, p = .845; OE, b = .009, t [72] = .019, p = .985; RISE, b = .350, t [72] = 1.51, p = .135), indicating the tripartite efficacy constructs were not predictive of adherence. Based on the nonsignificant b path, the c path (direct effect) was also not significant (b = 1.26 t [72] = 1.55, p = .126). However, the total effect c path was significant (F [1, 75] = 9.13, p < .05, R2 = .18; b = 2.01, t [75] = 3.02, p < . 05), suggesting caring directly predicted adherence without the influence of tripartite efficacy. Given significant relationships between all of the hypothesized variables, the lack of mediation findings was somewhat unexpected. Upon further examination of the correlations and beta coefficients, it was evident that the mediated variable RISE approached significance. Given the small sample size and the potential suppressing effects of SE and OE on RISE, a mediation analysis was conducted with RISE as the sole 62 mediator. This analysis yielded a significant mediation model (see Figure 4.3 for coefficients), suggesting that caring positively influences RISE, which in turn increases adherence. The a path from caring to RISE was statistically significant (F [1, 75] = 33.49, p < .05, R2 = .31; b = 1.25, t [75] = 5.79, p < .05), the b path from RISE to adherence was statistically significant (F [1, 75] = 11.14, p < .05, R2 = .23; b = .56, t [75] = 2.16, p < .05), the direct effect c path (F [1, 75] = 11.14, p < .05, R2 = .23; b = 1.25 , t [75] = 2.29, p < .05), and finally, the total effect c path was significant (F [1, 75] = 9.13, p < .05, R2 = .18; b = 2.01, t (75) = 3.02, p < . 05). Overall, 23% of the variance in adherence was accounted for by caring and RISE. Discussion The aims of the current study were to examine relationships between a caring climate and tripartite efficacy, associations between tripartite efficacy and adherence to PT/SPP exercises, and lastly, to determine if tripartite efficacy mediated the caring climate/rehabilitation adherence relationship. Although the implications of a caring Figure 4.3. Relationship between caring, RISE, and adherence. * denotes p < .05, ** 63 climate have received initial attention in qualitative research12, until the present study, researchers had yet to quantitatively examine the impact of caring with respect to salient personal and behavioral variables, namely, tripartite efficacy and rehabilitation adherence. Results supported the first hypothesis that a caring climate would have a direct positive relationship with adherence. Both correlational analysis and mediation findings (i.e., total effect) revealed significant positive relationships between caring and adherence, a finding lending additional support to preliminary qualitative findings11,12, highlighting the value of caring in rehabilitation environments. These findings also support theoretical assumptions regarding the benefits of a caring climate8,9,10, and suggest the importance of training practitioners in the “art and science” of fostering caring climates. It was also hypothesized that a caring climate would have positive relationships with SE, OE, and RISE (tripartite efficacy), assumptions receiving statistical support. The fact that caring was positively associated with all three forms of efficacy suggests that caring environments may enable individuals to feel more efficacious in their personal rehabilitation capabilities, in their practitioners’ ability, and in their practitioner’s belief in themselves (the patient). Although the cross-sectional nature of the current study does not allow for conclusions regarding time-order sequences of variables, findings from the current investigation indicate the possibility that caring climates may be an important precursor in the development of tripartite efficacy beliefs. Previous research in a sport context highlighted several antecedent variables (verbal persuasion, verbal and nonverbal support for the athlete, affective state of the coach)20,21, which appear conceptually 64 similar to caring variables identified by Greviskes et al.12. In particular, verbal persuasion, as well as verbal and nonverbal support behaviors, seem consistent with aspects of caring such as open communication, showing personal interest, and providing undivided attention. Moreover, coach attempts to understand athletes’ perspectives and the display of positive affective states may be viewed as akin to the caring behavior of benevolence. Conceptual similarities between elements of a caring rehabilitation environment and antecedents of tripartite efficacy, coupled with findings from the current study, support the contention that caring climates have beneficial implications in rehabilitation settings. Further research examining relationships between caring climates and tripartite efficacy among individuals suffering various chronic diseases (e.g., PD, multiple sclerosis, Huntington’s disease) therefore warrants further attention. The third hypothesis was that SE, OE, and RISE (tripartite efficacy) would each have a direct positive relationship with adherence. Correlation analysis supported this contention. The current study not only provides further empirical evidence of the selfefficacy/adherence relationship established16-18, but supports initial research indicating a relationship between tripartite variables and greater adherence13. Interestingly, of the tripartite efficacy variables associated with adherence, RISE demonstrated the strongest relationship with adherence. This novel finding suggests that estimations of others (e.g., physical therapists) beliefs about one’s personal capabilities may play an influential role in fostering essential behaviors such as adherence. Further research examining strategies for building relation inferred self-efficacy in rehabilitation settings is warranted. Lastly, it was hypothesized that SE, OE, and RISE would mediate the relationship between caring and adherence. Analysis of the data failed to support this assertion, a 65 finding somewhat surprising given positive correlations previously discussed as well as substantial evidence linking, the self-efficacy component with adherence to rehabilitation programs16-18. Several possibilities may explain the nonsignificant mediation findings. While all of the correlations were significant between the variables in the proposed model, the coefficients for the b paths linking tripartite efficacy to adherence, as well as the direct effect of caring on adherence, were not significant. In the current study, the lack of significance within the mediation model may have been related to suppression effects in which the predictor variables were too closely related. Based on the exploratory analyses, it seems that SE and OE suppressed the effects of RISE on adherence. Consistent with previous research by Jackson and colleagues13 in which increased perceptions of RISE were linked with increased engagement (i.e., adherence), findings from the current study indicated that RISE mediated the caring climate rehabilitation adherence relationship. This finding further supports the correlational finding highlighting the salience of RISE in influencing critical rehabilitation behaviors. Limitations and Future Directions Despite important findings regarding the potential benefits of a caring climate and tripartite efficacy for rehabilitation adherence, several limitations are evident in the current study. First, the sample was relatively small, which often leads to low power and the potential for nonsignificant findings. Additionally, the data were entirely self-report and as with any self-report data, there are often issues of recall bias and social desirability. Specifically, within rehabilitation literature, inflated accounts of adherence have been reported. With a mean score of 12.8 out of 15 on the SIRAS, this certainly 66 could have been the case for the current study. Similar to the SIRAS, the CCS often encounters issues with social desirability and bias in responses. The CCS has been reported to exhibit ceiling effects (when a large concentration of the participant scores are near the upper limit of the measurement) skewed towards "feeling cared for". In the current study, the mean score for the CCS was 4.6 of out 5, indicating a lack of variability. Researchers in the current study chose to use robust statistical methods (Preacher and Hayes bootstrapping) in order to combat this issue; however, researchers may choose to examine individuals who experienced a lack of care (e.g., those who failed to complete prescribed rehabilitation regimens), in an effort to increase sample variability. Conclusions The significant correlations found between caring and adherence, caring and tripartite efficacy, as well as tripartite efficacy and adherence provide researchers and practitioners novel information with regard to increasing efficacy and adherence to rehabilitation for those with PD. From a practical standpoint, the findings from the current study provide evidence for developing education programming aimed at instructing novice practitioners to create a caring climate in order to maximize adherence and efficacy. Based on the characteristics of caring reported by Greviskes and colleagues12 and Greenfield and colleagues13, practitioners should show they personally value patients, help patients to feel empowered, openly communicate with patients, provide exceptional service, show interest in patients’ lives beyond rehabilitation, create a supportive atmosphere, display benevolence, and pay attention to exercise technique. 67 Practitioners should also bear in mind that individuals with PD often have low perceptions of efficacy. Given preliminary relationships between caring and tripartite efficacy found in the current study, practitioners who create caring climates may also positively impact efficacy beliefs among individuals with PD. References 1. Tomlinson CL, Patel S, Meek C, et al. Physiotherapy versus placebo or no intervention in Parkinson's disease. Cochrane DB Syst Rev. 2012; 10(9). doi: 10.1002/14651858.CD002817 2. Frazzitta G, Maestri R, Uccellini D, Bertotti G, Abelli P. Rehabilitation treatment of gait in patients with Parkinson's disease with freezing: A comparison between two physical therapy protocols using visual and auditory cues with or without treadmill training. Mov Disord. 2009; 24(8): 1139-1143. 3. Munneke M, Nijkrake MJ, Keus SH, et al. Efficacy of community-based physiotherapy networks for patients with Parkinson's disease: A clusterrandomised trial. Lancet Neurol. 2010; 9(1): 46-54. 4. Ellis T, Boudreau JK, DeAngelis TR, et al. Barriers to exercise in people with Parkinson disease. Phys Ther. 2013; 93(5): 628-636. 5. Greene MG, Adelman RD, Friedmann E, Charon R. Older patient satisfaction with communication during an initial medical encounter. Soc Sci Med. 1994; 38(9):1279-88. 6. Forkan R, Pumper B, Smyth N, Wirkkala H, Ciol MA, Shumway-Cook A. Exercise adherence following physical therapy intervention in older adults with impaired balance. Phys Ther. 2006; 86(3):401-10. 7. Bandura A. Health promotion by social cognitive means. 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Enhancing patient-practitioner relationships within physical therapy for individuals with Parkinson’s disease: A focus on caring. J Geriatr Phys Ther. 2018; Published Online Ahead of Print. 13. Jackson, B, Dimmock, JA, Taylor, IM, & Hagger, MS. The tripartite efficacy framework in client–therapist rehabilitation interactions: Implications for relationship quality and client engagement. Rehabil Psychol, 2012; 57(4), 308319. 14. Bandura, A. Social foundations of thought and action: A social cognitive theory. Englewood Cliffs, NJ: Prentice-Hall, Inc.; 1986. 15. Bandura, A. (1998). Health promotion from the perspective of social cognitive theory. Psychol Health, 13(4), 623-649. 16. Moon LB, Backer J. Relationships among self-efficacy, outcome expectancy, and postoperative behaviors in total joint replacement patients. Orthop Nurs. 2000; 19(2):77-86. 17. Hellstrom K, Lindmark B, Wahlberg B, Fugl-Meyer AR. Self-efficacy in relation to impairments and activities of daily living disability in elderly patients with stroke: A prospective investigation. J Rehabil Med. 2003; 35(5):202-7. 18. Carlson JJ, Norman GJ, Feltz DL, Franklin BA, Johnson JA, Locke SK. Selfefficacy, psychosocial factors, and exercise behavior in traditional versus modified cardiac rehabilitation. J Cardiopulm Rehabil Prev. 2001; 21(6):363-73. 19. Lent RW, Lopez FG. Cognitive ties that bind: A tripartite view of efficacy beliefs in growth-promoting relationships. J Soc Clin Psychol. 2002; 21(3):256-86. 20. Jackson B, Knapp P, Beauchamp MR. Origins and consequences of tripartite efficacy beliefs within elite athlete dyads. J Sport Exerc Psychol. 2008; 30(5):51240. 21. Jackson B, Grove JR, Beauchamp MR. Relational efficacy beliefs and relationship quality within coach-athlete dyads. J Soc Pers Relat. 2010; 27(8):1035-50. 69 22. Jackson B, Myers ND, Taylor IM, Beauchamp MR. 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Brewer BW, Van Raalte JL, Petitpas AJ, Sklar JH, Pohlman MH, Krushell RJ, Ditmar TD, Daly JM, Weinstock J. Preliminary psychometric evaluation of a measure of adherence to clinic-based sport injury rehabilitation. Phys Ther Sport. 2000; 1(3):68-74. 28. Brown TC, Fry MD. Relationship of exercise participants’ perceptions of the caring climate to their motivational responses in college aerobic classes. Women Health. 2013:843-57. 29. Brown TC, Fry MD, Little TD. The psychometric properties of the perceived motivational climate in exercise questionnaire. Meas Phys Educ Exerc Sci. 2013; 17(1):22-39. 30. Gano-Overway LA. Exploring the connections between caring and social behaviors in physical education. Res Q Exerc Sport. 2013; 84(1):104-14. 31. Fry MD, Guivernau M, Kim MS, Newton M, Gano–Overway LA, Magyar TM. Youth perceptions of a caring climate, emotional regulation, and psychological well-being. Sport Exerc Perform Psychol. 2012; 1(1):44. 32. Brewer BW, Avondoglio JB, Cornelius AE, Van Raalte JL, Brickner JC, Petitpas AJ, Kolt GS, Pizzari T, Schoo AM, Emery K, Hatten SJ. Construct validity and interrater agreement of the Sport Injury Rehabilitation Adherence Scale. J Sport Rehabil. 2002; 11(3):170-8. 33. Kolt GS, Brewer BW, Pizzari T, Schoo AM, Garrett N. The Sport Injury 70 Rehabilitation Adherence Scale: A reliable scale for use in clinical physiotherapy. Physiother. 2007; 93(1):17-22. 34. Preacher KJ, Hayes AF. Asymptotic and resampling strategies for assessing and comparing indirect effects in multiple mediator models. Behav Res Methods. 2008; 40(3):879-91. CHAPTER 5 CONCLUSION The aim of this dissertation was to explore the relevance of social cognitive variables in understanding the quality of PD patients’ rehabilitation experiences and salient behavioral and patient-centered outcomes, namely adherence and quality of life. The aim of the first qualitative study was to discern the characteristics of caring as well as potential outcomes of caring within rehabilitation settings. Building on findings from study 1, studies 2 and 3 were formulated to further explore variables articulated within SCT. Specifically, study 2 examined relationships between caring and adherence, caring and quality of life, adherence, and quality of life, while study 3 examined relationships between caring, tripartite efficacy, and adherence. Study 2 used a quantitative methodology to assess relationships between caring, adherence, and quality of life, and whether adherence mediated the caring climate/quality of life relationship. Study 3 further explored SCT variables, specifically the influence of caring on tripartite efficacy and rehabilitation adherence. Once again, a mediation analysis was conducted to examine the potential mediating influence of tripartite efficacy variables on relations between caring and adherence. This chapter discusses the findings of each study as well as the implications of the overall dissertation. 72 Summary Study 1 Study 1 examined the nature of caring in a rehabilitation setting, as well as the potential consequences or implications of caring for individuals with PD. A qualitative methodology was used for study 1 in order to gather the perspectives of participants currently enrolled in a secondary prevention program. A total of 10 participants were interviewed about experiences in their program and interactions with practitioners. Participants indicated that they felt cared for when practitioners showed interest in clients beyond rehabilitation, created a supportive atmosphere, displayed benevolence, and paid attention to exercise technique. Participants also reported that feeling cared for helped them to put forth more effort in their rehabilitation sessions as well as increase their attendance. Although this was the first study to examine outcomes of caring in a rehabilitation setting, the findings were consistent with caring research in the physical activity realm (Fry et al., 2012 Gano-Overway et al., 2009; Newton et al., 2007a). The characteristics of caring were also similar to the definition of caring that has been used in physical activity settings (Newton et al., 2007a), which informed the measurement choice of the CCS (Newton et al., 2007b) in the subsequent dissertation studies. Study 2 Building on study 1 findings suggesting a potential link between caring and increased effort and attendance (i.e., adherence), the second study was conducted to further examine relationships between caring and rehabilitation adherence and to explore implications of these variables for quality of life among individuals with PD. An 73 additional aim was to examine whether adherence mediated the relationship between a caring rehabilitation climate and quality of life outcomes. It was hypothesized that caring would be related to quality of life and adherence, and that adherence would demonstrate positive relationships with quality of life. Additionally, it was hypothesized that adherence would mediate the relationship between caring and quality of life. A total of 76 participants were given self-report instruments to assess caring, adherence, and quality of life. Unfortunately, the hypothesized relationships did not show significance. All correlations between variables were nonsignificant. Given a priori hypotheses with respect to mediation, a mediation analysis was conducted despite the inevitable nonsignificant findings. The results were surprising given findings from study 1 and prior research linking adherence with quality of life (Frazzitta, Maestri, Uccellini, Bertotti, & Abelli, 2009; Munneke et al., 2010; Tomlinson et al., 2012). As discussed above, methodological considerations such as ceiling effects in the measurements, the multidimensional nature of PD, and a homogeneous sample may have contributed to the nonsignificant results. Further research with larger samples that include individuals who feel less than cared for and those who have dropped out of rehabilitation may be necessary to increase the variance of the sample in order to fully understand the nature of the relationship between caring, adherence, and quality of life. Study 3 The third study examined the relationship between caring, tripartite efficacy, and adherence. The aim of the third study was to examine the mediating relationship between caring (an environmental factor), efficacy (a personal factor), and adherence (a behavior). 74 Based on SCT tenets, it was hypothesized that caring would be related to tripartite efficacy, caring would be related to adherence, tripartite efficacy would be related to adherence, and finally, tripartite efficacy would mediate the relationship between caring and adherence. A total of 77 participants completed questionnaires that assessed perceptions of caring, efficacy, and adherence. While all correlations between variables for the hypothesized relationships were significant, the mediation model was not. Within the model, caring predicted all three forms of efficacy, as well as adherence independent of the mediators, but the efficacy constructs failed to predict adherence. The latter finding was surprising, especially considering past literature linking self-efficacy to increased adherence in rehabilitation settings (Carlson et al., 2001; Hellstrom et al., 2003; Moon & Backer, 2000). It is important to note that although tripartite efficacy constructs failed to mediate the caring climate/adherence relationship, significant positive associations between the three efficacy constructs and adherence suggest the potential importance of fostering tripartite efficacy in augmenting rehabilitation adherence. It is also worth noting that follow-up evaluation of the correlations and beta coefficients revealed that self-efficacy and other efficacy may have suppressed the effects of RISE. When entered as a sole mediator, RISE significantly mediated the relationship between caring and rehabilitation adherence. This finding highlights the value of caring climates in promoting an individual’s belief that significant others (e.g., a PT) are confident in one’s rehabilitation capabilities, the latter of which may be particularly germane in fostering rehabilitation adherence. Collectively, findings from study 3, suggest the importance of caring climates in fostering all three efficacy constructs as well as the value of caring in promoting rehabilitation adherence. 75 Implications As there is currently no cure for PD, rehabilitation programs are a central component of treatment programs that seek to mitigate disease progression, maintain physical function, and promote quality of life. Given notoriously low rates of adherence to rehabilitation programs and the declines in function and quality of life that typically accompany PD progression, I chose to examine social cognitive factors that had the potential to influence adherence rates and maintain quality of life. While there were several significant findings supporting the proposed hypotheses, there were also some nonsignificant findings. Taken as a whole, results from three studies included in this dissertation were somewhat inconsistent. Nonetheless, several practical implications. The findings from study 1 suggest practitioners should strive to create a caring climate within rehabilitation clinics in order to improve attendance and effort (i.e., adherence) in respective rehabilitation programs. Additionally, the qualitative information from study 1 provides practitioners with a set of characteristics indicative of a caring climate in a rehabilitation setting. Practitioners should strive to demonstrate interest in their patients, to create a supportive atmosphere, display benevolence, and pay attention to exercise technique. Simple behaviors, such as welcoming the patient into the clinic to create a supportive atmosphere, are cost-effective and efficient methods to promoting adherence. Additional suggestions for the creation of a caring climate include 1) remembering information such as names, family information, and other personal details; 2) smile at patients and say ‘hello’ to patients as they enter the clinic; 3) be available to answer patient questions; 4) display kindness and warmth; 5) provide one on one attention; and 6) correct exercise technique. These strategies may provide the basis 76 for education programs for novice practitioners, PT support staff, or students aiming to foster a caring climate within rehabilitation settings. As indicated, doing so may be crucial in promoting adherence and subsequently combatting the progression of disability. Surprisingly, the findings from study 2 conflict with the findings from studies 1 and 3 with regard to caring and adherence. Study 2, which aimed to provide quantitative support for the relationship, did not find a significant relationship between caring and adherence. The correlation between caring and adherence was not significant and therefore the relationships within the mediation model were not significant as well. These nonsignificant findings suggest that no relationships of any kind were evident between caring and adherence. Such findings also suggest that practitioners may wish to seek out additional methods for enhancing adherence levels and quality of life. Such qualifications aside, it is important to note that study 2 was the first quantitative study examining outcomes of caring in a rehabilitation context, and as such, these preliminary results require further investigation. Although study 2 did not provide quantitative support for the relationship between caring, adherence, and quality of life, study 3 not only linked caring and adherence, but provided evidence of links between caring, tripartite efficacy, and adherence. First, there was an association between caring and all three forms of efficacy within the tripartite model. These novel findings provide insight for practitioners in creating programs and training novice practitioners. If caring behaviors can be used to increase the already low levels of efficacy experienced by individuals with PD, there may be a variety of positive effects that can be gleaned from the creation of a caring climate. 77 Study 3 also found an association between self-efficacy, other efficacy, relation inferred self-efficacy, and adherence. The path assessing this relationship within the mediation model was not significant, but the correlations were significant, suggesting of the existence of some relationship between tripartite efficacy and adherence. In order to promote self-efficacy, practitioners should target the four sources of efficacy identified by Bandura (1977), past performance accomplishments, verbal persuasion, vicarious experiences, and physiological readiness. For example, a practitioner may draw attention to previous rehabilitation sessions in which the patient was successful or discuss a previous patient’s success within a similar program. The association between other efficacy and adherence in study 3 is a novel finding that suggests practitioners should strive to make their patients feel confident in their (the practitioner) abilities as a practitioner. In order to increase perceptions of other efficacy, practitioners should display confidence in their decisions; stay up to date on current knowledge and rehabilitation techniques; provide knowledge, resources, and information to their patients regarding program techniques and exercises; and be attentive to questions asked by the patient. Finally, study 3 revealed an association between RISE and adherence and as indicated previously, RISE mediated the caring climate/adherence relationship. In order to address the critical behavior of adherence, practitioners should aim to make their patients feel as if they (the practitioner) believe in his/her (the patient’s) capabilities in rehabilitation. Many of the same techniques used for increasing self-efficacy can be used to increase RISE, but if the patients do not perceive feelings of efficacy from their practitioner, the effects of self-efficacy building techniques may be undermined. Past 78 research in nonrehabilitation contexts (Jackson, Knapp, & Beauchamp, 2008) suggest that displaying confident body language to ‘the other’ in the relationship, as well as using language that portrays confidence in ‘the other,’ are effective techniques for increasing RISE. Additionally, when an individual had a more positive affective state, such as showing happiness, it was beneficial in terms of increasing the other individuals RISE (Jackson et al., 2008). Finally, it seems that practitioners can use caring behaviors in order to increase perceptions of RISE. As discussed above, study 1 suggests that practitioners would do well to show interest in patients beyond rehabilitation, create a supportive atmosphere, display benevolence, and pay attention to patient’s exercise technique. Given conflicting evidence provided by this dissertation as a whole, the exact nature of the relationships outlined in this dissertation are somewhat unclear and warrant further examination. However, based on the findings from studies 1 and 3, along with support from previous literature, it is likely that caring and RISE both have a positive influence on adherence. Practitioners should focus on the creation of a caring climate in clinics and exercise programs in order to increase efficacy perceptions as well as levels of adherence. Future Directions The line of research developed in this dissertation provides ample opportunity for expansion and future study. Specifically, the inconsistent findings between studies with regard to caring and adherence demonstrate the need for further research in order to support the relationship found in studies 1 and 3. There were several methodological 79 issues discussed with regard to study 2 that can be used to inform future research. For example, measuring quality of life may be better suited for longitudinal investigation in which change in quality of life can be assessed, a possibility unfeasible with the crosssectional design used in the current studies. Also, specifically targeting individuals who felt less than cared for or those who have dropped out of physical therapy may help increase the variance within the samples. Lastly, using additional measures, such as attendance records and practitioner ratings to corroborate the self-reported adherence levels, may be helpful with regard to social desirability. Beyond changes that can be made to enhance the replication of the current studies, the findings from this dissertation provide groundwork for a plethora of follow-up studies. First, researchers may examine caring and tripartite efficacy using a variety of qualitative and quantitative methods. Although the characteristics of caring found in study 1 seemed to correspond with Newton and colleagues’ definition of a caring climate, it may be beneficial to construct a specific caring climate scale for use in a rehabilitation setting. The development of a rehabilitation caring climate scale may include further qualitative inquiry to determine additional caring behaviors within rehabilitation contexts as well as quantitative assessment of possible items. Additionally, it may be beneficial to examine tripartite efficacy using a mixed methodology. A mixed method approach would allow researchers to parse out the intricacies of tripartite efficacy in a rehabilitation setting in the form of identifying specific behaviors that make patients feel selfefficacious, efficacious in their practitioner, and increased perceptions of RISE. Researchers may use qualitative interviews or focus groups of patients and practitioners to ask about specific behaviors that increase perceptions of efficacy (self-, other, and 80 RISE) in rehabilitation. Furthermore, researchers may choose to compare identified behaviors to the items from the scales constructed by Jackson and colleagues (2012) to measure tripartite efficacy in order to validate the items for use in a rehabilitation setting. Second, the population of individuals with PD face unique challenges with regard to their disease as well as within rehabilitation. Several other neurodegenerative diseases, such as multiple sclerosis and Huntington’s disease, face similar challenges due to the progressive nature of neurodegenerative diseases. Perhaps expanding the current line of research to include various neurodegenerative diseases may allow for a larger population to draw a sample from, as well as additional experiences with regard to caring, tripartite efficacy, adherence, and quality of life. Another population that may provide additional information regarding adherence and quality of life for individuals with PD is the practitioners that work within such rehabilitation programs. Ascertaining the practitioner perspective may be particularly important with regard to tripartite efficacy due to the dyadic nature of the tripartite model. Researchers may choose to compare responses of patients and practitioners to determine if patients are accurately perceiving practitioner’s efforts at increasing efficacy levels. Lastly, because adherence and quality of life are quite complex, it seems likely that there may be other factors that influence both constructs. While the current studies were focused on what practitioners might do (i.e., create a caring climate and increasing efficacy), it is possible that adherence levels and quality of life were influenced by a variety of factors external to the patient-practitioner relationship. For example, it is possible that the care from other individuals within a patient’s social network, such as a spouse, family member, or friend, may also influence an individual’s adherence and 81 subsequent quality of life. Also, due to the unpredictable nature of PD, simple changes, such as the time of day participants respond to surveys, whether or not the participant recently engaged in a rehabilitation session, or whether participants took their medication, may all influence responses with regard to adherence and quality of life. Using SCT as a framework, researchers should consider the multitude of variables that may account for changes in adherence as well as quality of life. References Carlson, J. J., Norman, G. J., Feltz, D. L., Franklin, B. A., Johnson, J. A., & Locke, S. K. (2001). Self-efficacy, psychosocial factors, and exercise behavior in traditional versus modified cardiac rehabilitation. Journal of Cardiopulmonary Rehabilitation and Prevention, 21(6), 363-373. Frazzitta, G., Maestri, R., Uccellini, D., Bertotti, G., & Abelli, P. (2009). Rehabilitation treatment of gait in patients with Parkinson's disease with freezing: A comparison between two physical therapy protocols using visual and auditory cues with or without treadmill training. Movement Disorders, 24(8), 1139-1143. Fry, M. D., Guivernau, M., Kim, M. S., Newton, M., Gano–Overway, L. A., & Magyar, T. M. (2012). Youth perceptions of a caring climate, emotional regulation, and psychological well-being. Sport, Exercise, and Performance Psychology, 1(1), 44. Gano-Overway, L. A., Newton, M., Magyar, T. M., Fry, M. D., Kim, M. S., & Guivernau, M. R. (2009). Influence of caring youth sport contexts on efficacyrelated beliefs and social behaviors. Developmental Psychology, 45(2), 329. Hellstrom, K., Lindmark, B., Wahlberg, B., & Fugl-Meyer, A. R. (2003). Self-efficacy in relation to impairments and activities of daily living disability in elderly patients with stroke: A prospective investigation. Journal of Rehabilitation Medicine, 35(5), 202-207. Jackson, B., Dimmock, J. A., Taylor, I. M., & Hagger, M. S. (2012a). The tripartite efficacy framework in client–therapist rehabilitation interactions: Implications for relationship quality and client engagement. Rehabilitation Psychology, 57(4), 308. Jackson, B., Knapp, P., & Beauchamp, M. R. (2008). Origins and consequences of tripartite efficacy beliefs within elite athlete dyads. Journal of Sport and Exercise Psychology, 30(5), 512-540. 82 Moon, L. B., & Backer, J. (2000). Relationships among self-efficacy, outcome expectancy, and postoperative behaviors in total joint replacement patients. Orthopedic Nursing, 19(2), 77-85. Munneke, M., Nijkrake, M. J., Keus, S. H., Kwakkel, G., Berendse, H. W., Roos, R. A., ... ParkinsonNet Trial Study Group. (2010). Efficacy of community-based physiotherapy networks for patients with Parkinson's disease: A clusterrandomised trial. The Lancet Neurology, 9(1), 46-54. Newton, M., Watson, D. L., Gano-Overway, L., Fry, M., Kim, M. S., & Magyar, M. (2007). The role of a caring-based intervention in a physical activity setting. The Urban Review, 39(3), 281-299. Newton, M., Magyar, M., Kim, M. S., Watson, D., Gano-Overway, L., Fry, M., & Guivernau, M. (2007). Psychometric properties of the caring climate scale in a physical activity setting. Revista de Psicologia del Deporte, 16(1), 0067-84. Nilsson, M. H., Drake, A. M., & Hagell, P. (2010). Assessment of fall-related selfefficacy and activity avoidance in people with Parkinson's disease. BMC Geriatrics, 10(1), 1. Tomlinson, C. L., Patel, S., Meek, C., Herd, C. P., Clarke, C. E., Stowe, R., ... Ives, N. (2012). Physiotherapy versus placebo or no intervention in Parkinson's disease. The Cochrane Library, 8. doi: 10.1002/14651858.CD002817.pub3. APPENDIX A CONSENT FORMS 84 Consent Form Study 2 BACKGROUND You are being asked to take part in a research study. Before you decide it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully. Ask us if there is anything that is not clear or if you would like more information. Take time to decide whether you want to volunteer to take part in this study. The purpose of the study is to explore caring and adherence to physical therapy within a physical therapy context. Specifically, the researchers are interested in the notion of caring and how it might affect adherence to physical therapy and subsequent outcomes, such as quality of life. STUDY PROCEDURE As part of this study, you are asked to complete a 20 to 40 minute survey. Questions will be asked about your experiences in physical therapy, your relationship with your physical therapist, your adherence to your physical therapy program, and your current Parkinson’s symptoms. RISKS There are no foreseeable risks associated with this study. Unforeseeable risk is anticipated to be no greater than that of daily living, but in the event of any pain or discomfort (physical or emotional) associated with the study, contact the researcher immediately (contact information provided below). BENEFITS We hope the information we get from this study may help develop a greater understanding of how enhancing the patient-practitioner relationship in physical therapy may improve the physical therapy process. This knowledge will be used to provide physical therapy professionals information on how to improve their practice and hopefully your experience as a patient. CONFIDENTIALITY Your data will be kept confidential. No names will be collected with the data, but data and records will be stored in a locked filing cabinet or on a password protected computer located in the researcher’s work space. Only the researcher and members of the study team will have access to this information. PERSON TO CONTACT If you have questions, complaints or concerns about this study, you can contact Lindsey Greviskes at [phone] or [e-mail]. If you feel you have been harmed as a result of participation, please also call Lindsey Greviskes at the number above or the faculty advisor Dr. Les Podlog at [phone] who may be reached from 9am-5pm (MST) Monday-Friday. Institutional Review Board: Contact the Institutional Review Board (IRB) if you have questions regarding your rights as a research participant. Also, contact the IRB if you have questions, complaints or concerns which you do not feel you can discuss with the 85 investigator. The University of Utah IRB may be reached by phone at [phone] or by e-mail at [e-mail]. Research Participant Advocate: You may also contact the Research Participant Advocate (RPA) by phone at [phone] or by email at [e-mail]. VOLUNTARY PARTICIPATION It is up to you to decide whether to take part in this study. Refusal to participate or the decision to withdraw from this research will involve no penalty or loss of benefits to which you are otherwise entitled. This will not affect your relationship with the investigator. COSTS AND COMPENSATION TO PARTICIPANTS There are no costs/compensation for participants in this study. CONSENT By signing this consent form, I confirm I have read the information in this consent form and have had the opportunity to ask questions. I will be given a signed copy of this consent form. I voluntarily agree to take part in this study. ___________________________________ Printed Name of Participant ___________________________________ Signature of Participant ______________________ Date 86 Consent Form Study 3 BACKGROUND You are being asked to take part in a research study. Before you decide it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully. Ask us if there is anything that is not clear or if you would like more information. Take time to decide whether you want to volunteer to take part in this study. The purpose of the study is to explore caring, efficacy and adherence to physical therapy within a physical therapy context. Specifically, the researchers are interested in the notion of caring and several forms of efficacy (confidence) and how they might affect adherence to physical therapy. STUDY PROCEDURE As part of this study, you are asked to complete a 20 to 40 minute survey. Questions will be asked about your experiences in physical therapy, your relationship with your physical therapist, your adherence to your physical therapy program. RISKS There are no foreseeable risks associated with this study. Unforeseeable risk is anticipated to be no greater than that of daily living, but in the event of any pain or discomfort (physical or emotional) associated with the study, contact the researcher immediately (contact information provided below). BENEFITS We hope the information we get from this study may help develop a greater understanding of how enhancing the patient-practitioner relationship in physical therapy may improve the physical therapy process. This knowledge will be used to provide physical therapy professionals information on how to improve their practice and hopefully your experience as a patient. CONFIDENTIALITY Your data will be kept confidential. No names will be collected with the data, but data and records will be stored in a locked filing cabinet or on a password protected computer located in the researcher’s work space. Only the researcher and members of the study team will have access to this information. PERSON TO CONTACT If you have questions, complaints or concerns about this study, you can contact Lindsey Greviskes at [phone] or [e-mail]. If you feel you have been harmed as a result of participation, please also call Lindsey Greviskes at the number above or the faculty advisor Dr. Les Podlog at [phone] who may be reached from 9am-5pm (MST) Monday-Friday. Institutional Review Board: Contact the Institutional Review Board (IRB) if you have questions regarding your rights as a research participant. Also, contact the IRB if you have questions, complaints or concerns which you do not feel you can discuss with the 87 investigator. The University of Utah IRB may be reached by phone at [phone] or by e-mail at [e-mail]. Research Participant Advocate: You may also contact the Research Participant Advocate (RPA) by phone at [phone] or by email at [e-mail]. VOLUNTARY PARTICIPATION It is up to you to decide whether to take part in this study. Refusal to participate or the decision to withdraw from this research will involve no penalty or loss of benefits to which you are otherwise entitled. This will not affect your relationship with the investigator. COSTS AND COMPENSATION TO PARTICIPANTS There are no costs/compensation for participants in this study. CONSENT By signing this consent form, I confirm I have read the information in this consent form and have had the opportunity to ask questions. I will be given a signed copy of this consent form. I voluntarily agree to take part in this study. ___________________________________ Printed Name of Participant ___________________________________ Signature of Participant ______________________ Date APPENDIX B DEMOGRAPHIC SURVEY 89 Demographic Questionnaire 1. Age: _______ years 2. Gender: Male Female Other: ____________ 3. Race: Caucasian Asian African American Native American Pacific Islander 4. Ethnicity Hispanic/Latino Not Hispanic/Latino 5. Age of Disease Onset: _______ years 6. Were you taking medication for your Parkinson’s disease during your current or most recent physical therapy program? Yes No 7. During your current or most recent physical therapy program were you undergoing deep brain stimulation? Yes 90 No 8. What stage would you rate your Parkinson’s disease? Stage I Stage II Stage III Stage IV Stage V APPENDIX C CARING CLIMATE SCALE 92 Caring Climate Scale Agree 1 2 3 4 5 2) In this clinic, the practitioners try to help the patients. 1 2 3 4 5 3) In this clinic, patients feel safe. 1 2 3 4 5 4) In this clinic, patients feel welcome every day. 1 2 3 4 5 5) In this clinic, the practitioners listen to patients. 1 2 3 4 5 6) In this clinic, practitioners want to get to know all patients. 7) In this clinic, practitioners respect patients. 1 2 3 4 5 1 2 3 4 5 8) In this clinic, the practitioners accept patients for who they are. 9) In this clinic, patients feel comfortable. 10) In this clinic, patients feel that they are treated fairly. 1 2 3 4 5 1 1 2 2 3 3 4 4 5 5 11) In this clinic, everyone likes patients for who they are. 1 2 3 4 5 12) In this clinic, patients are treated with respect. 13) In this clinic, the practitioners are kind to the patients. 1 1 2 2 3 3 4 4 5 5 Newton, M., Magyar, M., Kim, M. S., Watson, D., Gano-Overway, L., Fry, M., & Guivernau, M. (2007). Psychometric properties of the caring climate scale in a physical activity setting. Revista de Psicologia del Deporte, 16(1), 0067-84. Strongly Agree Not Sure 1) In this clinic, the practitioners care about the patients. Strongly Disagree Disagree Directions: As you read each of the following statements, think about what your clinic and physical therapy practitioners are typically like. Please circle the number on the 5-point scale listed below that best describes how you truly feel. There are no right or wrong answers. We just really want to know how you feel. APPENDIX D ADHERENCE MEASURE 94 Adherence Measure Directions: Please answer each question honestly. Think about your current or most recent physical therapy program. 1) How often do/did you have physical therapy scheduled? ________ times/week 2) How often do/did you attend physical therapy? _________ times/week 3) How long does/did your physical therapist want you to spend on your exercises? _________ minutes 4) How long do you actually spend on your exercises when you do them? __________ minutes 5) What percentage of the time do you believe that you perform your rehabilitation exercises correctly? __________ % 6) If you are not currently enrolled in a physical therapy program did you complete the program? (circle one) Yes No I am currently enrolled APPENDIX E PARKINSON’S DISEASE QUESTIONNAIRE 96 PDQ-39 QUESTIONNAIRE Please complete the following Please tick one box for each question Due to having Parkinson’s disease, how often during the last month have you.... 1 Had difficulty doing the leisure activities which you would like to do? 2 Had difficulty looking after your home, e.g. DIY, housework, cooking? 3 Had difficulty carrying bags of shopping? 4 Had problems walking half a mile? 5 Had problems walking 100 yards? 6 Had problems getting around the house as easily as you would like? 7 Had difficulty getting around in public? 8 Needed someone else to accompany you when you went out? 9 Felt frightened or worried about falling over in public? 10 Been confined to the house more than you would like? 11 Had difficulty washing yourself? 12 Had difficulty dressing yourself? 13 Had problems doing up your shoe laces? Never Occasionally Sometimes Often Always or cannot do at all Please check that you have ticked one box for each question before going on to the next page Page 3 of 12 Questionnaires for patient completion 97 Due to having Parkinson’s disease, how often during the last month have you.... 14 Had problems writing clearly? 15 Had difficulty cutting up your food? 16 Had difficulty holding a drink without spilling it? 17 Felt depressed? 18 Felt isolated and lonely? 19 Felt weepy or tearful? 20 Felt angry or bitter? 21 Felt anxious? 22 Felt worried about your future? 23 Felt you had to conceal your Parkinson's from people? 24 Avoided situations which involve eating or drinking in public? 25 Felt embarrassed in public due to having Parkinson's disease? 26 Felt worried by other people's reaction to you? 27 Had problems with your close personal relationships? 28 Lacked support in the ways you need from your spouse or partner? Please tick one box for each question Never Occasionally Sometimes Often Always or cannot do at all If you do not have a spouse or partner tick here 29 Lacked support in the ways you need from your family or close friends? Please check that you have ticked one box for each question before going on to the next page Page 4 of 12 Questionnaires for patient completion 98 Due to having Parkinson’s disease, how often during the last month have you.... 30 Unexpectedly fallen asleep during the day? 31 Had problems with your concentration, e.g. when reading or watching TV? 32 Felt your memory was bad? 33 Had distressing dreams or hallucinations? 34 Had difficulty with your speech? 35 Felt unable to communicate with people properly? 36 Felt ignored by people? 37 Had painful muscle cramps or spasms? 38 Had aches and pains in your joints or body? 39 Felt unpleasantly hot or cold? Please tick one box for each question Never Occasionally Sometimes Often Always Please check that you have ticked one box for each question before going on to the next page Thank you for completing the PDQ 39 questionnaire Page 5 of 12 Questionnaires for patient completion APPENDIX F TRIPARTITE EFFICACY ITEMS 100 Tripartite Efficacy Items Client-related items 1. Schedule your time so that you can attend all your exercise sessions 2. Use the correct technique for all exercises 3. Remain motivated during difficult periods in your program 4. Communicate effectively toward your therapist at all times 5. Maintain a positive outlook during stressful periods in your program 6. Reach your goals for your program 7. Overcome barriers that you face in your program 8. Carry out your therapist’s instructions at all times Therapist-related items 1. Keep you highly motivated you throughout your program 2. Develop an effective program for you and make effective adjustments when needed 3. Help you to adhere to your program at all times 4. Provide you with expert advice about your program whenever you need it 5. Help you overcome any barriers you face in your program 6. Devise effective goals that meet your individual needs 7. Provide emotional support to you at all times 8. Communicate effectively toward you at all times Jackson, B., Dimmock, J. A., Taylor, I. M., & Hagger, M. S. (2012). The tripartite efficacy framework in client–therapist rehabilitation interactions: Implications for relationship quality and client engagement. Rehabilitation psychology, 57(4), 308.