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Vader et al., 2017

PERCEPTIONS OF ‘PHYSICAL ACTIVITY’ AND ‘EXERCISE’ AMONG PEOPLE LIVING WITH HIV: A QUALITATIVE STUDY Type of Publication: Research article Authorship: Kyle Vader,1 Alya Simonik,1 Denine Ellis,1 Dirouhi Kesbian,1 Priscilla Leung,1 Patrick Jachyra,2 Soo Chan Carusone,3 Kelly K O’Brien1,2,4 1 Department of Physical Therapy, University of Toronto, 500 University Avenue, Room

160, Toronto, Canada, M5G 1V7 2 Rehabilitation Sciences Institute (RSI), University of Toronto, 500 University Avenue,

Room 160, Toronto, Canada, M5G 1V7 3 Casey House, 9 Huntley Street, Toronto, Canada, M4Y 2K8 4 Institute of Health Policy, Management and Evaluation (IHPME), University of Toronto,

Health Sciences Building, 155 College Street, Suite 425, Toronto, Canada, M5T 3M6 Corresponding Author: Kelly K. O’Brien, PhD, BScPT, BSc Department of Physical Therapy University of Toronto 160-500 University Avenue Toronto, Ontario, Canada M5G 1V7 [email protected] Submitted to International Journal of Therapy and Rehabilitation

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Vader et al., 2017 ABSTRACT Background/Aims: Despite the benefits, many people living with HIV (PLWH) do not engage in regular physical activity (PA) and it is unclear how perceptions of PA and exercise influence participation. Our aim was to explore individual perceptions of PA and exercise in PLWH. Methods: We conducted a descriptive qualitative study using face-to-face semi-structured interviews. We recruited adults who self-identified as living with HIV from a specialty hospital in Toronto, Canada. Interviews were audio-recorded, transcribed verbatim, and analysed using thematic analysis. Findings: Fourteen participants with a median age of 50 years participated in the study. Four themes (and subsequent sub-themes) emerged relating to PA and exercise, including: (1) perceptions of PA and exercise (PA and exercise as a continuum of activity, viewing PA and exercise as a health-promoting behaviour, and PA and exercise ‘should’ be a greater priority); (2) benefits (restores physical function, improves mental health, and prevents isolation); (3) risks (physical injury, pain, and fear of ‘over-doing it’); and (4) recommendations for engagement (education, graded activity, and an individualized approach). Conclusions: Findings suggest healthcare providers should consider exploring perceptions of PA and exercise with PLWH to ensure PA interventions are individualized to meet their diverse health and well-being needs. Keywords: physical activity; exercise; HIV; rehabilitation; qualitative research

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Vader et al., 2017 INTRODUCTION The introduction of combination antiretroviral therapy (cART) has greatly improved life expectancy for people living with HIV (PLWH) (Deeks et al, 2013; Teeraananchai et al, 2016). In geographic regions where effective cART is available and accessible, HIV is now considered a chronic and episodic health condition (Deeks et al, 2013; O’Brien et al, 2008). The combination of aging, multi-morbidity, chronic HIV infection, and long-term cART use compounded with decreased physical fitness can create unique health-related challenges for PLWH, known as disability (Hasse et al, 2011; Hearps et al, 2016; Dillon et al, 2013; Schuelter-Trevisol et al, 2012). Disability among PLWH can be conceptualized as physical, cognitive, mental, and emotional symptoms and impairments, difficulties with day-to-day activity, challenges to social inclusion, and uncertainty or worrying about future health that can fluctuate over the course of HIV (O’Brien et al, 2008; O’Brien et al, 2009). As a result, HIV care has largely shifted to a chronic disease approach where self-management rehabilitation strategies, such as physical activity (PA), are important to promote health and overall well-being among PLWH (Swendeman et al, 2009; Jaggers et al, 2016; Merlin et al, 2015). Rehabilitation strategies can help address the complex multi-dimensional nature of disability experienced by PLWH (Worthington et al, 2005; Nixon et al, 2011; O’Brien et al, 2014). Casperson et al (1985) define PA as “any bodily movement produced by skeletal muscles that results in energy expenditure” whereas exercise is a subset of PA that is “planned, structured, and repetitive and performed with the intention to improve or

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Vader et al., 2017 maintain one or more components of physical fitness.” Systematic review evidence indicates that moderate-to-vigorous aerobic and progressive resistance exercise is a safe and effective strategy to improve cardiorespiratory fitness, strength, body composition, and quality of life for PLWH who are medically stable and taking cART (O’Brien et al, 2016; O’Brien et al, 2017). Despite the growing body of evidence that regular PA is an effective health-promoting behaviour for PLWH, few PLWH engage in regular PA (Schuelter-Trevisol et al, 2012; Basta et al, 2008). A recent meta-analysis by Vancampfort et al (2016) found that the majority of PLWH did not meet recommended PA guidelines. Further, another systematic review by Vancampfort and colleagues found low cardiorespiratory fitness levels among PLWH in comparison to other vulnerable groups, suggesting that many PLWH are not engaging in regular PA (Vancampfort et al, 2016).



Although the efficacy of PA interventions has been explored in PLWH, to our knowledge, perceptions of PA and exercise have not been explored using a qualitative approach (O’Brien et al, 2016; O’Brien et al, 2017). Rehm and Konkle-Parker (2016) conducted a cross-sectional study to determine PA levels and perceived benefits and barriers to exercise in a group of women living with HIV in the Southern United States and found that physical exertion was the most commonly reported barrier while enhanced physical performance was the most frequently reported benefit of PA. Although Rehm and KonkleParker (2016) measured levels of PA and perceived barriers/facilitators to PA using subjective and objective measures, they did not explore individual perspectives of PA and

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Vader et al., 2017 exercise in PLWH. Exploring individual perceptions and experiences of PA and exercise may provide valuable insight into why there is poor engagement in PA among PLWH. Study findings may also have the potential to assist healthcare providers who prescribe and encourage PA interventions to PLWH. To better understand exercise engagement in PLWH, we used a qualitative approach to create a framework to describe the interplay of factors (complex and episodic nature of HIV and multi-morbidity, social supports, perceptions and beliefs, past experience with exercise, and accessibility) and their influence on readiness to exercise (Simonik et al, 2016). Results of this work have been published elsewhere (Simonik et al, 2016). Although readiness to exercise among PLWH and the factors that influence readiness were explored, individual perceptions of and attitudes towards PA and exercise were not described. Given the dearth of research in this area, our aim in this paper was to specifically explore perceptions of ‘PA’ and ‘exercise’ and how they may influence engagement in PA or exercise among PLWH. METHODS Study Design We conducted a descriptive qualitative study employing in-depth face-to-face semistructured interviews (Sandelowski, 2010). In this paper, we specifically focused on

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Vader et al., 2017 exploring perceptions of PA and exercise as part of a broader qualitative study we conducted exploring readiness to exercise among PLWH (Simonik et al, 2016). Recruitment We recruited adults (18 years or older) who self-reported living with HIV and two or more additional health-related conditions in collaboration with Casey House, a speciality hospital in Toronto, Canada (Stewart et al, 2012). Participants were recruited using flyers and brochures posted at Casey House, as well as through in person distribution by staff and research team members on-site. Ethical Considerations The study was approved by the HIV/AIDS Research Ethics Board at the University of Toronto in Toronto, Canada. Written informed consent was obtained from each participant at the time of interview by a member of the research team. Confidentiality and anonymity of participant information was maintained throughout the research process. Data collection Interview Guide We created an interview guide to explore perceptions of PA and exercise among PLWH (Simonik et al, 2016). We specifically asked about perceptions of PA versus exercise,

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Vader et al., 2017 perceived risks and benefits, and recommendations to promote engagement in PA and exercise among PLWH. Interviews were conducted at the specialty hospital by pairs of the research team from January to May 2015. One team member interviewed and the other took field notes. Interviews were audio-recorded and transcribed verbatim. Transcripts were checked for accuracy by the interviewer. Demographic Questionnaire We administered a self-reported demographic questionnaire with items including age, gender, year of HIV diagnosis, self-reported concurrent health conditions, and self-reported exercise history according to the Transtheoretical Model (TTM) (Marcus and Simkin, 1994). In the demographic questionnaire, participants were asked to identify which statement best represented their exercise history based on the TTM: (1) I currently do not exercise and I do not intend to start in the next 6 months; (2) I currently do not exercise, but I am thinking about starting to in the next 6 months; (3) I currently exercise some, but not regularly; (4) I currently exercise regularly, but I have only begun doing so in the last 6 months; (5) I currently exercise regularly, and have done so for longer than 6 months; and (6) I have exercised regularly in the past, but I am not doing so currently (Marcus and Simkin, 1994). Data analysis We analyzed interview transcripts using thematic analysis as outlined by Braun & Clarke (2006) which included (1) familiarization with the data, (2) generating initial codes, (3)

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Vader et al., 2017 searching for themes, (4) reviewing themes, (5) defining and naming themes, and (6) producing a report. Specifically, pairs of researchers independently coded and then jointly reviewed each transcript to ensure comprehensibility of the coding process. We used the detailed coding of the first three transcripts to create a coding scheme to analyze remaining transcripts. We refined the coding scheme as new codes emerged from the analysis of subsequent interviews. We grouped similar codes into broader themes that related to PA and exercise. We used NVivo V.10© software to assist with data management (QSR International. NVivo qualitative data analysis software. V.10; 2012). Analysis and data collection were considered complete when no new themes were emerging from the data analysis. We employed an audit trail, reflexive dialogue, and multiple group discussions of the codes and emergent themes during analysis with the entire research team to establish and maintain analytical rigor (Miles and Huberman, 2013). RESULTS Fourteen participants (n=14) took part in an interview (approximately one hour in length) between January and May 2015. The majority of participants identified as male (64%), with an undetectable viral load (71%) and a median of nine concurrent health conditions in addition to HIV. Among the sample, addiction (50%), asthma (36%), cancer (36%), eye disorder (36%), and Hepatitis C (36%) were the most commonly reported concurrent conditions. The median reported age of participants was 50 years. The most commonly self-reported exercise history was ‘I currently exercise some, but not regularly’ (43%) followed by ‘I currently exercise regularly, and have done so for longer than 6 months’

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Vader et al., 2017 (21%) and ‘I currently do not exercise, but I am thinking of starting to exercise in the next 6 months’ (14%). See Table 1 for detailed characteristics of participants. (Insert Table 1 approximately here.) Four themes emerged from the data pertaining to PA and exercise, including: (1) perceptions of PA and exercise (2) benefits; (3) risks; and (4) recommendations for engagement in the context of HIV. We describe these four themes (and subsequent subthemes) as they relate to perceptions of PA and exercise from the lived experience of PLWH. See Table 2 for an outline of themes and sub-themes. (Insert Table 2 approximately here.) Theme 1: Perceptions of PA and Exercise – “it’s a priority depending on the day” Participants described PA and exercise as a continuum of activity, PA and exercise as health promoting behaviours, and finally, that PA and exercise ‘should’ be a greater priority for themselves. PA and Exercise as a Continuum of Activity Participants described PA and exercise as two ends of a spectrum of activity where PA was seen as basic mobility, activities of daily living, and housework, while exercise was

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Vader et al., 2017 perceived as regimented activity with the intention of improving physical endurance or strength. Participants described the differences between PA and exercise: “You could be doing house chores and that’s a physical activity … Exercise – I feel like it’s more regimented, it’s like you do repetition, routine” (INT-10). One participant highlighted that although exercise can be considered PA, PA cannot always be considered exercise: “I think exercise always involves physical activity, but I don’t necessarily think the reverse … Exercise always involves physical movement, but I don’t think physical movements always involves exercise” (INT-11). Another participant described PA and exercise as two ends of a continuum of activity: “I … think of [physical activity and exercise] as … the same thing on a sliding scale … [where physical activity and exercise are at] two ends of the scale” (INT-6). Most participants recognised that although PA and exercise have many similarities, there are also differences that makes PA and exercise unique. PA and Exercise as a Health Promoting Behaviour

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Vader et al., 2017 Participants described beliefs that PA and exercise are behaviours that can promote health and overall well-being. One participant stated that PA was an integral part of daily life: “If you don’t move, you don’t live. That’s my philosophy really. You gotta move. I never –I never realized that till I was in bed for a year. You know, I didn’t get up, I couldn’t get up” (INT-11). Participants also gave evidence as to why they perceived PA and exercise as a health promoting behaviour: “When I was on a regular routine for exercising, my body did feel stronger and healthier, my mind seemed to be clearer, I could think easier, I was getting happier” (INT-7). Overall, participants viewed PA and exercise as a positive health promoting behaviour, even if they did not engage in PA and exercise on a regular or routine basis. PA and Exercise ‘Should’ be a Greater Priority Participants acknowledged they ‘should’ be engaging in more PA and exercise than they were at present. This perception was described by one participant and his prioritization of PA and exercise:

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Vader et al., 2017 “[Exercise is] a medium priority just due to physical restrictions and health causes and I think it’s [an] important thing to recognize in people, especially long-term survivors that there’s multiple things going on and priorities. There’s different priorities being placed around and … exercise is there” (INT-1). Another participant acknowledged the uncertainty that comes along with living with HIV and how this impacted his ability to prioritize participating in PA and exercise: “Exercise would fit into like two to three days a week. It’s not an every day thing. […] It’s a priority depending on the day” (INT-8). Further, another participant shared that exercise should be a priority in order to maintain her health: “I think … [exercise] … should be important - I think it should. It’s important to me yes. Cause I wanna stay healthy” (INT-14). Although many were not engaging in PA or exercise on a routine basis, most participants viewed both PA and exercise as health promoting behaviours that ‘should’ be a greater priority in their day-to-day life. Theme 2: Benefits – “exercise is an extremely important tool with people with HIV”

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Vader et al., 2017 PLWH shared that engaging in routine PA and exercise had various benefits for overall health and well-being, particularly for those living with HIV. These benefits included restoring physical function, improving mental health, and preventing isolation. Restores Physical Function PA and exercise were seen by participants as a strategy that helped to maintain or restore their physical function after a health crisis or illness. One participant described that exercise was an important strategy that helped to regain physical strength: “After I was diagnosed I started getting sicker and weaker and so I started thinking that perhaps if I start exercising that it’ll help strengthen my body again, that’s why I started to exercise, that’s what motivated me” (INT-7). Another participant shared PA was an essential part of his daily routine that helped to maintain his overall level of mobility: “If I hadn't moved myself and gotten myself physically active I probably, my legs probably would not be the way they are today and I'd probably be in a wheelchair today” (INT-3). Both PA and exercise were seen by participants as a self-management strategy to maintain physical strength and overall level of physical mobility.

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Vader et al., 2017 Improves Mental Health Exercise was also viewed as a strategy to improve mental health, particularly for those who are also living with depression and other mental health diagnoses: “I think exercise is an extremely important tool with people with HIV, whether newly diagnosed or they’re having health crises [or] depression” (INT-1). Another participant shared that PA and exercise helped his emotional health: “I thought […] at the time that I started [to exercise that] it would really help with […] other parts of my life. Not just physically but like also emotionally. It became kind of a little spiritual” (INT-8). PA and exercise were seen by participants as strategies to improve their mental health and emotional well-being. Prevents Isolation PA and exercise was also seen as a strategy to take people out of isolation, while also providing socialization. One participant highlighted that he saw group-based exercise as a strategy to prevent isolation:

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Vader et al., 2017 “[Exercise] provides socialization and helps prevent isolation” (INT-1). Another participant highlighted he used PA and exercise as a strategy to take himself out of isolation: “There were a whole host of things that were kind of not feeling right – mentally, physically, emotionally. I was also isolated a little bit. So I mean I just tried to use exercise – I did use exercise to kind of as a baseline to kind of help […] It also took me out of isolation and it took me – like to be blunt, it took me out of unhealthy behaviours” (INT-8). PA and exercise were seen by many participants as a strategy to prevent isolation for some PLWH, particularly when PA and exercise were done outside of the home or in a groupbased setting. Theme 3: Risks – “I could damage myself by going too fast” Exercise was perceived as a more risky behaviour than PA as it was associated with a higher intensity of activity among PLWH. Risks such as physical injury, pain, and a fear of ‘over-doing it’ were brought up by many participants, particularly for higher intensity PA and exercise.

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Vader et al., 2017 Physical Injury Physical injury was described as a risk associated with exercise. One participant shared that she felt she could cause damage to herself if she did too much PA or exercise: “If it strains me, then that might mean […] a future damage. Like I could damage myself by going too fast and it’s like you don’t do anything and then one day you do a thousand activities and you’re so […] sore like, the next day.” (INT-2). Another participant described the risk of physical injury when engaging in resistance exercise: “I got a gym, like a home gym. A fitness gym. It is sitting in my living room […] but I think it’s a little bit too much for me. Even like the lowest weight or whatever. I don’t want to hurt myself” (INT-8). Ultimately, participants acknowledged that they thought of the risk of physical injury when considering engaging in PA or exercise. Pain In addition to physical injury and strain, some participants shared that they perceived residual pain from engaging in PA or exercise as a risk. One participant described that she

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Vader et al., 2017 was living with pain and expressed that she did not want to engage in structured PA or exercise as this may increase her pain: “I [have] enough soreness, enough problems that I don’t need to add more, like, by doing strenuous exercise you know, I don’t need to do that” (INT-2). Moreover, the possibility of residual pain, particularly among participants who were living with chronic pain, was perceived as a risk of vigorous PA and exercise among PLWH. Fear of ‘Over-Doing It’ When describing engaging in structural PA or exercise, some participants stated that they feared permanent injury if they participated in PA or exercise. One participant who had mobility challenges reported a fear of falling, particularly when she engaged in PA or exercise: “Am I going to fall? Am I going to permanently injure myself?” (INT-11). Some participants shared that they found resistance exercise, such as using free weights or other strengthening equipment, more intimidating and had a greater degree of risk than cardiovascular PA or exercise:

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Vader et al., 2017 “When I start exercising it tends to be a lot of cardio […] not a lot of resistance training. Because I’m afraid of that. I’ve never done that before […] I really wish I knew- I could do some like strength types of exercises and be a little more confident without thinking I’m going to hurt myself” (INT-8). Ultimately, participants described these risks served as barriers to engaging in routine PA and exercise. Theme 4: Recommendations for Engagement – “start small, that way I won’t get discouraged” Despite the perceived risks of engaging, participants offered advice for promoting engagement in PA and exercise in the context of HIV. Recommendations for engagement included education, graded activity, and the importance of using an individualized approach. Education Education on the role of PA and exercise as a self-management strategy was described as an important first step to promote engagement among PLWH. One participant highlighted the importance of receiving proper education prior to engaging in PA or exercise:

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Vader et al., 2017 “It’s important to get people informed about how important exercise is. And be shown the benefits of it. Whether it’s a little bit or a lot. They need to be informed about a lot of it, and […] informed about it, that it is achievable that they have if they are put or given the opportunity to get a proper attitude at looking at exercise through education” (INT-1). Education was emphasised as a strategy to promote engagement, particularly when healthcare providers are trying to initiate engagement in PA and exercise in PLWH. Graded Activity A graded and gradual approach to PA and exercise was suggested by many as a strategy to promote engagement among PLWH. One participant shared that it is important to begin activity slowly to prevent discouragement: "Start small, that way I don’t get discouraged. That’s how I started last time, last time I was on a good regime. I just started off with 10 push-ups, said let’s do 10, see how that feels, and then the next day I would add a couple more, then I would add a couple more. So I wasn’t getting myself overwhelmed or disappointed because I can’t reach a higher goal. Keeping the goals realistic was important” (INT-7). This concept was highlighted by another participant who shared that it was important to ‘start small’ when starting to become physically active:

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Vader et al., 2017 “I’d say start small […] walking, biking, hiking, swimming, stuff like that” (INT-13). Using a graded approach to PA and exercise was a common thread described by many participants. Individualized Approach When describing approaches to promote PA among PLWH, every participant emphasized the importance of taking an individualized approach that considered their unique challenges and other concurrent conditions to ensure the activity was safe. Participants described different types of PA and exercise that would be most attainable and realistic to promote long-term engagement. For some, PA in the water was described as a more fun and appealing type of activity: “The water - stuff in the water’s fun. It’s easier […] I find it’s a little easier to move your legs and stuff in the water than it is outside the water” (INT-4). Another participant felt that gentle stretching was more appropriate for their current level of physical abilities: “For me, personally, I believe it would be gentle stretching, to loosen up those um, stiff muscles, atrophy, whatever just stretch them out. Just to ease into it slowly, um, get

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Vader et al., 2017 things flowing, you know regular breathing, blood flow, and where I have the dizziness, you know, not taking it too hard” (INT-9). Conversely, one participant shared that function and activity based PA was more appealing as compared to formalized and structured exercise: “And an activity like let’s say going strawberry picking like you’re bending, picking, standing up. That’s just the same as doing exercise […] Sometimes people don’t think that something fun is exercise, they think exercise has to be horrible and strenuous and not so much fun” (INT-12). Overall, the views of PA and exercise from the perspective of PLWH provide a potential foundation to approach PA and exercise prescription and intervention in the context of HIV. DISCUSSION To our knowledge, this is one of the first qualitative studies to explore individual perceptions of PA and exercise in a sample of PLWH. Four themes (and subsequent subthemes) emerged from our data related to PA and exercise, which included: (1) perceptions of PA and exercise (PA and exercise as a continuum of activity, PA and exercise as a health promoting behaviour, and PA and exercise ‘should’ be a greater priority); (2) benefits (restores physical function, improves mental health, and prevents isolation); (3) risks

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Vader et al., 2017 (physical injury, pain, and fear of ‘over-doing it’); and (4) recommendations for engagement (education, graded activity, and an individualized approach). Taken together, our results provide a potential foundation for healthcare providers to approach PA and exercise prescription among PLWH. We found that the most commonly self-reported exercise history was ‘I currently exercise some, but not regularly’ in our sample, which is consistent with other work that has found variable levels of PA and exercise among PLWH (Schuelter-Trevisol et al, 2012; Vancampfort et al, 2016). Participants highlighted the importance of healthcare providers taking an individualized approach when prescribing PA and exercise that takes into account their sometimes unpredictable and fluctuating levels of health and physical function, which is consistent with Solomon et al (2014) who described the role of uncertainty in an aging HIV population. Our results are consistent with other work that similarly described motivators and perceived physical, mental, cognitive, and social benefits of engaging in community based exercise among PLWH (Li et al, 2017). Results suggest healthcare providers may benefit from individually exploring their patients’ perspectives of PA and exercise in order to meet their diverse health and wellbeing needs. This is important to consider as we found that perspectives of PA and exercise were diverse in our sample, and as health advocates, healthcare providers can be valuable sources of health information for patients (Weidinger et al, 2008; Reis et al, 2016). As highlighted by Shah et al (2016), PA counselling and patient education are integral components when prescribing and promoting PA and exercise among PLWH.

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Vader et al., 2017 We found that PLWH perceived benefits of PA and exercise as improving physical function, mental health, and preventing isolation. Our results are similar to results by Rehm and Konkle-Parker (2016) who described improved physical performance as the most commonly perceived benefit of PA by PLWH. Our results are also comparable to evidence exploring these concepts in other chronic illnesses, whereby Learnmonth and Motl (2015) found that people living with multiple sclerosis perceived maintaining physical function and increased social participation as benefits of engaging in PA and exercise interventions. Our results may provide merit to promoting group-based exercise programming among PLWH as a method to promote socialization (Brown et al, 2016). In terms of risks of PA and exercise, we found that physical injury, pain, and fear of ‘over-doing it’ were common perceptions. Our results are analogous to a qualitative study by Evans et al (2016) who found that risks of exercise among people with osteoarthritis included fear of over-doing it and causing physical harm. Healthcare providers should be aware of the perceived risks and importance of education to promote safe engagement in PA among PLWH. As PA and exercise can be effective self-management strategies for PLWH, healthcare providers should consider strategies to promote participation (O’Brien et al, 2016; O’Brien et al, 2017). We found that PLWH described the importance of education, graded activity, and an individualized approach as strategies to promote engagement. O’Dwyer et al (2016) similarly found that an individualized approach was perceived as an important step to promote engagement in PA interventions among people with ankylosing spondylitis. Similar recommendations, such as ensuring PA promotion is clear, simple, and realistic,

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Vader et al., 2017 have also been found when promoting PA among older adults (Stevens et al, 2014). Our results align and build on the work by Li et al (2017) who identified key factors to consider in developing and implementing community exercise programming for PLWH; and provided recommendations such as including self-management strategies and ensuring PA interventions are flexible to accommodate for the potential episodic nature of HIV (Li et al, 2017). Our findings suggest that some PLWH may find engaging in less formalized types of PA and exercise more realistic for long-term engagement. Emerging evidence in the context of HIV suggests that less formalized PA may yield comparable benefits to structured exercise for certain health outcomes (Mangona et al, 2015). Mangona et al (2015) conducted a randomized trial and found similar benefits to cardiorespiratory fitness for women living with HIV who engaged in 12 weeks of formal exercise (cycling and muscular endurance exercises) versus less formalized and playful PA such as dancing, skipping, and games. Despite the many strengths and contributions of our study, it is not without limitations. This study was conducted in a specialty HIV hospital in Toronto, Canada and it is unclear whether findings are transferable to the experiences of PLWH in rural populations. Further, although this study explored in-depth perceptions of PA and exercise, it is unclear how perceptions of these concepts may directly impact an individual’s likelihood to engage in PA or exercise. Additionally, there may be other perceptions of PA and exercise in PLWH that were not captured in our sample or analysis. Finally, while our study was specific to a small sample of PLWH, our findings may be applicable to individuals living with other

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Vader et al., 2017 chronic health conditions such as cardiovascular disease, chronic fatigue syndrome, diabetes, osteoarthritis, and multiple sclerosis where PA and exercise can serve as effective self-management strategies to promote health and overall quality of life (Pedersen and Saltin, 2015; Hoffman et al, 2016). CONCLUSIONS We described four themes related to perceptions of PA and exercise in the context of HIV, which included: (1) perceptions of PA and exercise; (2) benefits; (3) risks; and (4) recommendations for engagement in PA and exercise among PLWH. Our results serve as a potential point of departure when considering PA and exercise prescription in PLWH. Findings suggest that healthcare providers should consider exploring in-depth perceptions of PA and exercise with PLWH to ensure PA interventions are individualized to meet their diverse health and well-being needs. Future research should explore whether additional perceptions of PA and exercise influence engagement in PA with the ultimate goal of improving health, well-being, and quality of life for PLWH. ACKNOWLEDGEMENTS This research was completed in partial fulfillment of the requirements for an MScPT degree at the University of Toronto. This work was supported by a Connaught New Researcher Award at the University of Toronto. KKO is supported by a New Investigator Award from the Canadian Institutes of Health Research (CIHR).

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Vader et al., 2017 The authors would like to express their appreciation to those who gave their time to participate in this study as well as Casey House for scheduling and providing the space to conduct this research. The authors also thank Ayesha Nayar (University of Toronto) for her assistance in this study. CONFLICT OF INTEREST We have no conflicts of interest to declare. KEY POINTS •

Although physical activity (PA) and exercise are safe and effective self-management strategies to promote health and quality of life in the context of HIV, few people living with HIV (PLWH) regularly engage in PA or exercise.



PLWH perceived PA and exercise as a positive health promoting behaviour that ‘should’ be a greater priority in their daily routine.



PLWH stated benefits of PA and exercise such as restoring physical function, improving mood, and preventing isolation while risks included physical injury, pain, and fear of ‘over-doing it.’



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Vader et al., 2017 •

Recommendations for engagement in PA and exercise in PLWH included education, graded activity, and an individualized approach.



Results provide a potential foundation for PA and exercise prescription among PLWH and more broadly may be of interest to healthcare professionals who prescribe PA and exercise to people living with other chronic and episodic health conditions.

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Vader et al., 2017 Deeks SG, Lewin SR, Havlir DV (2013) The end of AIDS: HIV infection as a chronic disease. The Lancet 382(9903): 1525-1533. Dillon DG, Gurdasani D, Riha J, et al (2013) Association of HIV and ART with cardiometabolic traits in sub-Saharan Africa: a systematic review and meta-analysis. Int J Epidemiol 42(6): 1754-1771. Evans G, Adams J, Donovan-Hall M (2016) An exploration of the facilitators and barriers for people with osteoarthritis to engage in exercise. Int J Ther Rehabil 23(4): 182-188. Hasse B, Ledergerber B, Furrer H, et al (2011) Morbidity and aging in HIV-infected persons: the Swiss HIV cohort study. Clin Infect Dis 53(11): 1130-1139. Hearps A, Schafer K, High K, Landay A (2016) HIV and aging: parallels and synergistic mechanisms leading to premature disease and functional decline. In: Sierra F, Rohanski R (eds) Advances in Geroscience. Springer International Publishing: 509-550. Hoffman TC, Maher CG, Briffa T, et al (2016) Prescribing exercise interventions for people with chronic conditions. CMAJ 188(7): 510-518. Jaggers JR, Sneed JM, Lobelo RF, et al (2016) Results of a nine month home-based physical activity intervention for people living with HIV. Int J Clin Trials 3(3): 106-119.

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Vader et al., 2017 Learmonth YC, Motl RW (2016) Physical activity and exercise training in multiple sclerosis: a review and content analysis of qualitative research identifying perceived determinants and consequences. Disabil Rehabil 38(13): 1227-1242. Li A, McCabe T, Silverstein E, et al (2017) Community-based exercise in the context of HIV: factors to consider when developing and implementing community-based exercise programs for people living with HIV. J Int Assoc Provid AIDS Care 16(3):267-275. Mangona L, Daca T, Tchonga F, et al (2015) Suppl 1: M5: Effect of different types of exercise in HIV+ Mozambican women using antiretroviral therapy. Open AIDS J 9: 89-95. Marcus BH, Simkin LR (1994) The transtheoretical model: applications to exercise behavior. Med Sci Sports Exerc 26(11): 1400-1404. Merlin JS, Walcott M, Kerns R, Bair MJ, Burgio KL, Turan JM (2015) Pain self-management in HIV-infected individuals with chronic pain: a qualitative study. Pain Med 16(4): 706-714. Miles MB, Huberman AM, Saldana J (2013) Qualitative data analysis: an expanded sourcebook (3rd ed). Sage, California: 275-322. Nixon S, Forman L, Hanass-Hancock J, et al (2011) Rehabilitation: A crucial component in the future of HIV care and support. South Afr J HIV Med 12(2): 12-14.

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Vader et al., 2017 Table 1. Participant Characteristics (n=14) Characteristic

Number of participants

Gender Man Woman



Median age in years (IQR) Median year of HIV diagnosis (IQR)

9 5 50 (46,53) 1991 (1988,1998)

Currently taking anti-retroviral therapy

14

HIV viral load Undetectable Detectable Unknown

10 2 2

Self-reported number of concurrent health conditions (in addition to HIV) 2-5 conditions 6-10 conditions 11-15 conditions 16 or more conditions Median number of concurrent health conditions (IQR)

3 5 3 3 9 (6,12)

Most commonly reported concurrent health conditions Addiction Asthma Cancer Eye disorder Hepatitis C Mental health conditions Joint pain Muscle pain Hypertension Peripheral neuropathy Arrhythmia Frailty Hepatitis B Neurocognitive decline

7 5 5 5 5 4 4 4 3 2 2 2 2 2

Highest education level achieved Master’s degree College degree

1 2

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Vader et al., 2017 Some college credits completed Bachelor’s degree Less than high school Not reported

7 2 1 1

Ethnicity Caucasian Aboriginal/first nation French Canadian Black Italian Not identified Self-reported exercise history: I currently do not exercise and I do not intend to start exercise in the next 6 months. I currently do not exercise, but I am thinking of starting to exercise in the next 6 months. I currently exercise some, but not regularly. I currently exercise regularly, but have only done so in within the past 6 months. I currently exercise regularly, and have done so for longer than 6 months. I have exercised regularly in the past, but I am not doing so currently. Unknown

5 2 1 1 1 4



0 2 6 1 3 1 1

IQR=interquartile range Submitted to International Journal of Therapy and Rehabilitation

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Vader et al., 2017 Table 2. Summary of Themes and Sub-themes of Physical Activity and Exercise among People Living with HIV Theme Sub-theme Perceptions of Physical • Physical Activity and Exercise as a Continuum of Activity Activity and Exercise • Physical Activity and Exercise as a Health Promoting Behaviour •

Physical Activity and Exercise ‘Should’ be a Greater Priority

Benefits

Risks

Recommendations for Engagement in Physical Activity and Exercise among People Living with HIV



Restores Physical Function



Improves Mental Health



Prevents Isolation



Physical Injury



Pain



Fear of ‘Over-Doing It’



Education



Graded Activity



Individualized Approach



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