Abstract
Objective:
To identify factors to consider for developing and implementing a community-based exercise (CBE) program for people living with HIV (PLWH).
Methods:
We conducted a qualitative descriptive study using semi-structured interviews with PLWH, rehabilitation professionals, and recreation providers from Canada and the United Kingdom. We asked participants to describe their experience with exercise, facilitators, and barriers to accessing and participating in exercise, and factors to consider in developing a CBE program for PLWH. Interviews were analyzed using content analytical techniques.
Results:
We developed a Framework of CBE in the Context of HIV that describes (1) exercise experiences of PLWH (nature of exercise, motivators for initiating or sustaining exercise, perceived benefits, and barriers and facilitators to exercise) and (2) 11 factors to consider in developing and implementing a CBE program for PLWH.
Conclusion:
Recommendations for the development and implementation of an accessible and feasible CBE program may enhance exercise participation among PLWH.
Introduction
With the advent of combination antiretroviral therapy (ART), an increasing number of people living with HIV (PLWH) are living longer and aging with HIV. 1 -4 As PLWH live longer to rates of normal life expectancy, HIV increasingly is considered a chronic illness. 5 Despite the improvements in survival, PLWH are experiencing a range of physical, mental, cognitive, and social health-related challenges of HIV, associated comorbidities, and aging. 6 -8 Hence, there is an increasing role for rehabilitation interventions to address the health challenges (or disability) experienced by adults living with HIV. 9
Exercise is one rehabilitation intervention and self-management strategy that can reduce disability experienced among PLWH. Systematic review evidence suggests that aerobic and resistance exercise can improve cardiovascular fitness, body composition, strength, and quality of life in adults living with HIV. 10,11 However, few PLWH meet the guidelines for physical activity, with the rate of physical inactivity reaching 73% among this target population. 12,13
Community-based exercise (CBE) programs may enhance exercise participation among PLWH. Community-based exercise programs involve a group of individuals with similar health conditions performing structured exercise under the supervision of a physiotherapist or a fitness instructor, with the goal of promoting and continuing exercise in the community. 14,15 Community-based exercise programs may incorporate social group interaction or self-management strategies to help individuals with chronic conditions independently manage their health-related challenges. 14 -18
Community-based exercise programs have been developed and evaluated for people with chronic neurological conditions, such as multiple sclerosis and stroke. 14,15,17 However, it is unclear whether evidence on the safety and efficacy of CBE programs for these chronic conditions is generalizable to adults living with HIV who may experience unique challenges related to stigma, disclosure, and body image which can influence ART adherence. 19 -21 HIV-specific CBE programs have been established in the United Kingdom in the hospital-based setting. 22,23 Nevertheless, it is unclear how such programs may translate into the broader HIV community. A better understanding of the perspectives of exercise and the factors that may contribute to the development of an accessible, safe, and feasible CBE program tailored to the needs of PLWH in the community is needed.
Our aim was to describe considerations for developing and implementing a CBE program for PLWH in Canada from the perspective of PLWH, rehabilitation professionals, and recreation providers. Specific objectives were to: (1) describe the exercise experiences of PLWH, (2) identify facilitators and barriers to accessing and participating in exercise including CBE, and (3) describe the factors to consider in developing and implementing a CBE program for PLWH.
Methods
We conducted a qualitative descriptive study using in-depth interviews with stakeholders involved in the participation or delivery of CBE programs. 24 We recruited adults (18 years or older) living with HIV from community health centers and HIV community organizations in Canada via recruitment posters and snowball sampling. We recruited rehabilitation professionals and recreation providers with experience leading CBE programs for PLWH or other chronic conditions from Canada and the United Kingdom. We received written informed consent from all participants. This study was approved by the University of Toronto HIV Research Ethics Board (Ethics Committee Reference #29545).
We conducted semi-structured interviews face-to-face, via telephone, and Skype. We used an interview guide comprised of questions related to the experiences with exercise and factors to consider in developing and implementing a CBE program. We also asked adults living with HIV their age, gender, whether they self-identified as an exerciser, and whether they were currently accessing a CBE program. We defined “exerciser” as an individual who participates in moderate- or vigorous-intensity aerobic physical activity for at least 150 minutes each week. 12 We defined “CBE program” as structured exercise performed in a group and led by a health care or fitness professional. 14,18 All interviews were audio-recorded, transcribed verbatim, and reviewed for accuracy.
We analyzed the data using group content analytical techniques. 25,26 We coded transcripts line-by-line and clustered codes into broader categories (or themes). Two researchers coded each transcript independently, then collaboratively determined the codes and developed a participant summary for each interview. We developed a coding scheme consisting of themes that represented categories of codes. We refined the coding scheme at 4 stages throughout the analytical process and then organized the data into a Framework of CBE in the Context of HIV.
Results
Eleven participants, including 7 (64%) adults living with HIV, 2 (18%) rehabilitation professionals, and 2 (18%) recreation providers, participated in the study. Of the 7 adults with HIV, all were men and 4 were 50 years or older. Six (86%) identified themselves as exercisers and 2 (29%) were currently accessing a CBE program. One rehabilitation professional developed a CBE program for people with neurological conditions in Canada and the other coordinated a hospital-based HIV exercise program in the United Kingdom. Recreation provider participants led exercise programs in Canada and the United Kingdom.
Framework of CBE in the Context of HIV
The Framework of CBE in the Context of HIV consists of 2 components (Figure 1). The first component describes the overarching exercise experiences of PLWH and includes: (1) the nature of current exercise among PLWH, (2) motivators to initiate or sustain exercise, (3) perceived benefits of exercise, and (4) facilitators and barriers to accessing and participating in exercise including CBE. The second component describes factors to consider in developing and implementing a CBE program for PLWH.

Framework of CBE in the context of HIV. CBE indicates community-based exercise; PLWH, people living with HIV.
Overarching exercise experiences of adults living with HIV
(1) Nature of current exercise among PLWH
Six of the 7 participants living with HIV self-identified as current exercisers, which ranged from “recently started exercising” to “always enjoyed sports and exercise so this has just been a continuation for 40 years or longer in my life.” Frequency of exercise varied, with the majority of participants exercising at least 3 to 6 days a week including a combination of aerobic exercise (eg, cycling, swimming, and running) and resistance training (eg, resistance machines and free weights). Five of the 7 participants living with HIV, including 1 participant who did not self-identify as an exerciser, reported walking as a form of activity: The only thing I do is a lot of walking but only in the summer. You won’t get me out in the winter…Probably walk 10 blocks a day…Sometimes an hour, sometimes a couple of hours, sometimes half an hour. [PLWH; INT-11] I have an instructor telling and reminding me to breathe. So I prefer [the group class] over the machines. The machines you could cheat easily yourself…I like the instructors. [PLWH; INT-7] (2) Motivators to initiate or sustain exercise
Common motivators included enjoyment with exercise: “It’s not like I’m doing this because my doctor told me…it’s just that I like it,” as well as the social benefits: “The longer you’re with a group, you get to start to know the same people…so I have a group of Y friends here.”
Four participants living with HIV were motivated to exercise because of recommendations from their healthcare providers: “My doctor, HIV specialist, and dietitian asked me to do exercise.” Another motivator was combating the side effects of HIV medications: “People with HIV/AIDS take so many medications that they produce these side effects where you accumulate fat all in your body. And exercise helps with these side effects.”
Participants living with HIV also reported exercising for secondary prevention of comorbidities: “Since the heart attack, I like to see the exercise as beneficial. I only need to see my cardiologist once per year and she’s been pleased with the results.” (3) Perceived benefits of exercise
Most participants reported experiencing benefits from exercise that spanned physical, mental, cognitive, and social domains.
All participants reported physical benefits of exercise such as body structure and function (eg, improved cardiovascular fitness, body composition) and activity (eg, improved walking). Consequences of HIV and associated medications such as “recurrent chest infection” and “reduced appetite” were reportedly attenuated by exercise. One recreation provider noted improvements in clinical laboratory values: Lots of people said their LDL cholesterol dropped…their CD4 count has improved. For people having problems with bone density, they had their DEXA scores improved…So we see a lot of physical reasons why exercise has worked. [Recreation provider; INT-2] Most people who had a problem with their body image as a result of losing weight feel more confident with their body image and consequently they start to participate more in life and feel better about the way life is. [Rehabilitation professional; INT-5] My HIV yoga group, we’ll go have a potluck or at Christmas time we’ll do an event. We go for lunch at community centers sometimes. So there’s that social aspect that comes into play. [PLWH; INT-1] It’s the motivation in the group. They [people with HIV] form attachments within that group…I think it’s way too hard for people with disability to continue to exercise on their own…They’ve already got so many impairments…So these groups are critical to maintain health and well-being. [Recreation provider; INT-8] I’ve heard people say that coming to the community center is such a big plus for them. They’re not coming to the hospital, they’re not coming to the outpatient physio department…they see babies, they see toddler classes, they see macho guys…They feel like they’re in a normalized environment and that’s huge! [Recreation provider; INT-8] (4) Facilitators and barriers to accessing and participating in exercise including CBE
Some facilitators and barriers to accessing and participating in CBE were intrinsic in nature. Most participants living with HIV reported lacking knowledge of how to perform or progress exercises safely and correctly as a barrier: There are lots of people out there who have never entered a gym in their life, probably never exercise regularly. And to start a regimen exercising, I’ve got friends who won’t know what to do…So it’s difficult for some people. [PLWH; INT-3]
Experiencing negative life events were also barriers to exercise. One participant living with HIV stopped exercising due to incarceration: “I got bad news that I would go to jail and I was like, why bother, so I just stopped altogether.” Parenting or employment responsibilities resulted in a lack of time to exercise.
One participant with HIV expressed how falling out of an exercise routine can result in a barrier to continuing exercise: “It takes 3 weeks to get into a habit and routine and 3 days to fall out of it.” Participants reported that having a structured exercise routine with specific exercise guidelines was a facilitator to exercise.
Other facilitators and barriers to accessing and participating in CBE were extrinsic in nature. Cost of the gym membership was a barrier to accessing a CBE program, as 1 participant living with HIV stated: “A lot of HIV-positive people are on fixed incomes. If [the program] was cheaper, it’d certainly be a lot easier to carry on a month-to-month basis.”
Most participants reported that a group-based environment enabled members to share challenges and coping strategies to overcome the social isolation associated with HIV. One participant with HIV described: It’s nice to see some of the friendly faces when you get to the facility every week, where the people in the program say, “Oh we missed you last week.” It’s nice to know that somebody noticed. Isolation can be a big problem for people with HIV. So those kinds of social interactions can be very meaningful. [PLWH; INT-7]
Collectively, the motivators and perceived benefits may interact with the facilitators and barriers to influence participation in exercise (Figure 1).
Factors to consider in CBE program development and implementation
The second component of the Framework describes participants’ recommendations (clustered into 11 factors) to consider for the development and implementation of a CBE program to meet the needs of PLWH (Figure 1). Factors included: (1) tailoring CBE to the functional abilities and goals of participants; (2) considering the program structure including exercise duration, frequency, intensity, time and type, program flexibility, referral process, and location; (3) group versus personal exercise; (4) HIV-specific versus integrated exercise with other populations; (5) adjunct interventions to exercise; (6) exercise environment; (7) instructor qualifications and knowledge of HIV; (8) program cost; (9) program promotion; (10) tracking exercise progress and goal attainment; and (11) strategies to enhance exercise adherence. A detailed overview of the recommendations for each of the factors with supporting data is provided in Table 1.
Factors to Consider in Developing and Implementing a Community-Based Exercise Program for PLWH.
Abbreviations: CBE, community-based exercise; PLWH, people living with HIV.
Discussion
To our knowledge, this is the first study to describe the experiences with exercise and CBE among PLWH and the considerations for the development of an HIV-specific CBE program. Preferences for the characteristics of CBE varied among participants. Most preferred group-based exercise due to the associated social benefits. Reported benefits of group exercise among individuals with chronic conditions included increased social support, 16 enhanced engagement in social activities, 15 and reduced isolation and stigma associated with HIV. 27 People living with HIV and rehabilitation professional participants described how social support increased adherence to exercise participation. Social support and group cohesion can positively affect adherence to exercise in healthy adults. 28,29 Although no known evidence exists on the ability of group exercise to influence exercise adherence in the context of HIV, we anticipate the same concepts could apply and may be a focus of future inquiry.
Adjunct interventions to CBE programs may include social events, mental health counseling, and nutrition education sessions. Established exercise programs for PLWH and people with other chronic conditions offer auxiliary components in a group format to promote peer support and social interaction. For example, the YMCA Positive Health Program in the United Kingdom conducts social events, nutrition workshops, and art and creative writing classes to promote social interaction. 30 In 2013, 53% of registered clients completed the Positive Health Program, with 69% reporting socializing more after completion of the program. 31 The Together in Movement and Exercise program offers an optional social gathering with refreshments after each exercise class to encourage peer support. 15 Hence, a CBE program that incorporates adjunct components to exercise may facilitate social interaction and support among PLWH.
Enhancing self-management skills to independently manage health-related challenges may improve exercise adherence in individuals with chronic conditions including PLWH. 15,16 The Kobler Rehabilitation Class, a hospital-based HIV-specific exercise program in the United Kingdom, integrates a self-management program with exercise to enhance self-efficacy among members. 22,23 Similarly, Lee et al found that exercise interventions aimed at improving self-efficacy may increase confidence of PLWH in initiating and maintaining routine exercise behavior. 16 Thus, a CBE program should incorporate a self-management component in addition to exercise to increase self-efficacy and exercise adherence among PLWH.
The cost associated with CBE programs was a barrier for participants living with HIV to access and participate in exercise. Sixty-one percent of PLWH in British Columbia reported insufficient income to afford medication, housing, transportation, or child care costs as a primary stressor. 32 Affordability should be balanced with the cost of delivering the CBE program to ensure sustainability. Community-based exercise programs have used community partnerships to enhance accessibility for participants such as a rehabilitation hospital partnering with a municipal recreation organization to deliver a CBE program for people with neurological conditions. 15 Financial assistance in the form of subsidized gym memberships offered in community health centers may also be a model for future CBE programs.
The episodic nature of HIV may result in unpredictable fluctuations in health outcomes, further influencing access and participation in CBE for adults living with HIV. 33,34 Although the majority of participants did not consider their experience with HIV as episodic, they described variable fatigue and mental health issues that impacted their ability to exercise. Episodic disability may make it difficult for PLWH to establish and maintain an exercise routine due to periods of absence or decreased physical capacity. Establishing a flexible program structure and training health care or fitness professionals to accommodate the episodic nature of PLWH are important factors to consider for an HIV-specific CBE program. 35
Recommendations varied on the HIV-specific versus integrated nature of CBE programs. HIV-specific CBE programs in the United Kingdom are designed to facilitate exercise for PLWH with low levels of function. An HIV-specific program may therefore be ideal to address the needs of adults with HIV who have higher levels of disability. 22,23 However, these programs should not be advertised as HIV specific to align with the desire of participants who do not want to disclose their HIV status or participate in a class labeled as HIV specific. Given the issues of HIV-related stigma, ensuring confidentiality and diminishing unwanted HIV disclosure are important to consider in a CBE program. 19,27 Participants who felt there was no need for an HIV-specific program felt that PLWH could exercise with the general population. Thus, the potential benefits and consequences of an HIV-specific program should be weighed in the context of meeting the specific needs of adults living with HIV while considering the unique issues of stigma, disclosure, and the episodic nature of HIV.
Recommendations for a CBE Program for PLWH
Based on our findings, we offer the following recommendations for the development and implementation of an accessible, safe, and feasible CBE program for PLWH: (1) Exercise should be offered in a group format to promote social interaction among PLWH, while exercise prescription should be tailored to meet the specific functional abilities and needs of the individual; (2) A CBE program should focus on exercise but may be supplemented with adjunct self-management and/or social support sessions to enhance self-efficacy in PLWH; (3) A CBE program for PLWH may be integrated with other chronic illness or general populations while acknowledging the confidentiality surrounding HIV disclosure and stigma; (4) A CBE program should have a flexible structure to accommodate the unique needs of PLWH and implement training for health care or fitness instructors on the episodic nature of HIV; and (5) A CBE program should be affordable to maximize accessibility for PLWH such as collaborating with community health organizations to facilitate funding initiatives for a CBE program. These recommendations provide a foundation for health providers, community-based organizations, and recreational fitness facilities to consider to enhance access and participation in CBE for adults with HIV.
Our study is not without limitations. The study was conducted in urban settings in Canada and the United Kingdom, which may not capture the specific considerations for PLWH in rural or developing regions. Second, all participants with HIV were men; hence, it is unclear what specific considerations may exist for women. Finally, the majority of participants self-identified as exercisers, thus results may not reflect those who do not exercise regularly. When exploring CBE in the context of self-management, it is important to consider the readiness of PLWH to engage in exercise and how this may be influenced by the complex and episodic nature of HIV and multimorbidity. 35
This study aimed to gain an understanding of the diversity in perspectives from users of CBE programs (PLWH) and those administering CBE interventions (rehabilitation professional and recreation providers). Our aim was not to achieve saturation or compare perspectives within each stakeholder group but rather to obtain a rich description of insights and recommendations from key representatives in the HIV and CBE field. This study serves as a critical foundation from which to inform future research surrounding the development, implementation, and evaluation of CBE programs for PLWH. The factors to consider and subsequent recommendations for developing and implementing a CBE program in the HIV community will continue to evolve with future research in order to facilitate engagement and ongoing participation in accessible, safe, and feasible CBE programs for PLWH.
Conclusion
The Framework of CBE in the Context of HIV describes (1) the overarching exercise experiences of PLWH from the perspectives of PLWH, rehabilitation professionals, and recreation providers and (2) factors to consider in developing and implementing an accessible, safe, and feasible CBE program for PLWH. Considerations should be taken with CBE design and implementation to address the unique needs of PLWH as well as HIV-related issues including stigma, disclosure, and the episodic nature of HIV. Recommendations from this work may be used by health providers and community-based organizations to help enhance accessibility and participation in CBE for PLWH.
This research was completed in partial fulfillment of the requirements for an MScPT degree at the University of Toronto.
Footnotes
Acknowledgments
The authors acknowledge Nkem Iku (Research Coordinator at the University of Toronto) for her assistance with participant recruitment.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by a Connaught New Researcher Award (University of Toronto). Kelly K. O’Brien and Nancy M. Salbach are supported by a Canadian Institutes of Health Research (CIHR) New Investigator Award.
