Sage Journals: Discover world-class research

Abstract

French

Background:

It can be difficult for kidney transplant recipients (KTRs) to be physically active after their transplantation. Physical inactivity is a risk factor for cardiovascular disease, one of the leading cause of death among KTRs. To help KTRs start and maintain a physical activity routine, we developed the KEeP ACTIVe Club, a 6-month online intervention with access to a kinesiologist, a patient partner, and a private support group with an online platform (Facebook).

Objective:

The objective of this study was to capture the participants’ experiences of the KEeP ACTIVe Club.

Design:

Individual interviews.

Setting:

The Center hospitalier de l’Université de Montréal (CHUM) and the McGill University Health Center (MUHC) kidney transplant programs.

Participants:

Kidney transplant recipients who participated in the KEeP ACTIVe Club.

Methods:

Between October and December 2021, we conducted 11 individual semi-directed interviews with KTRs from 2 urban kidney transplant programs who participated in the KEeP ACTIVe Club. The interviews were digitally recorded and transcribed. Thematic analysis was conducted.

Results:

Participants’ principal motivation to participate in the KEeP ACTIVe Club was to improve their physical fitness following their transplant in a pandemic period. One of the main benefits of the KEeP ACTIVe Club was the improvement of participant’s self-confidence and the knowledge gained regarding exercises adapted to their reality as KTRs. However, the small number of participants and the schedules of classes offered were viewed as a pitfall of the current intervention. Finally, the peer mentoring and support gained by other participants were important and viewed as highly impactful aspects of the KEeP ACTIVe Club.

Limitations:

Only 11 of the 18 patients who participated in the KEeP ACTIVe Club took part in the interviews.

Conclusion:

Participants reported a positive experience with the KEeP ACTIVe Club. Peer mentoring and support gained from other participants seem to be essential aspects of the experience within the KEeP ACTIVe Club. This program is a good avenue to offer in post-transplant care to help KTRs to be more active and to connect with other patients.

Keywords

kidney transplantation physical activity individual interview qualitative methods online intervention

Introduction

Kidney transplantation is the optimal treatment for selected patients with end-stage kidney disease since it improves patients’ survival and quality of life compared with dialysis.¹ Hypertension, dyslipidemia, diabetes, and cardiovascular disease remain important burdens for kidney transplant recipients (KTRs),² and cardiovascular disease is one of the principal cause of mortality after kidney transplantation.^3-5 Physical activity has been shown to decrease cardiovascular risk after kidney transplantation.^5-7 Physical activity has also been shown to improve cardiovascular capacity, insulin sensitivity, inflammation, blood pressure, and overall quality of life.^8-10 However, KTRs show low levels of physical activity after transplantation, as physical activity and cardiovascular disease are not seen as priority following their transplant.¹¹ Numerous barriers preventing patients from engaging in regular physical activity have been identified, such as fear of causing injury to the renal transplant, fatigue, depression and anxiety, immunosuppression-related adverse effects, lack of motivation and absence of clinicians’ recommendations on physical activities, patients’ comorbidities, socio-economic factors, skeletal muscle atrophy, and weather.^12-18

Another difficult aspect of life after transplantation for KTRs is the feeling of loneliness,¹⁹ with a strong need to connect with other patients to share their experiences.²⁰ During focus groups conducted with KTRs, we showed that peer mentoring could be used as a tool to help patients to adopt a healthy lifestyle, including physical activity.²⁰ Peer mentoring involves pairing mentees with individuals who have had similar experiences to provide training, information, and emotional support.²¹ Social media platforms have been used to facilitate peer mentoring between mentors and mentees.^22,23 In different populations, social media and peer mentoring have been shown to provide a sense of support in dire times and situations, to develop meaningful relationships, as well as to improve overall mental health of participants.^24-28 Peer mentoring has also been used to promote lifestyle change in some patients’ populations and improving physical activity.²⁸

To help KTRs improve their physical activity levels, knowledge of cardiovascular disease and related risk factors, and diminish the sense of loneliness they may feel after transplantation, we developed the “Kidney Transplant Physical Activity and Social Club” or the “KEeP ACTIVe Club.” The KEeP ACTIVe Club was initially designed to be an in-person intervention; however, because of the COVID-19 pandemic, it was converted to a virtual intervention. A specific description of the Club will follow in the “Methods” section. The objective of this study was to gather participants’ experiences of taking part in the KEeP ACTIVe Club, as well as recommendations for future iterations of the Club.

Methods

Description of the Intervention

The KEeP ACTIVe Club intervention took place over a 6-month period in 2 transplant centers in Montreal. One group was intended for French-speaking KTRs and one for English-speaking KTRs. At the beginning of the intervention, participants received 1 virtual educational session on cardiovascular disease and the benefits of physical activity from the 2 investigators (T.J.F. and M.C.F.), who are, respectively, a physiotherapist (T.J.F.) with expertise in physical activity and a transplant nephrologist (M.C.F.) involved in the care of KTRs and also a qualified kinesiologist (L.M.) who is also a KTR. After this inaugural presentation, participants were invited to choose their preferred physical activity from several options: a walking program, individual home-based exercises, online virtual classes designed, and led by a qualified kinesiologist, the Refit for Life program from the World Transplant Games, exercise sessions with a private kinesiologist or physiotherapist of their choice (at their own cost), and an open option where participants could choose any other form of activity they would like to perform. They could pick one or many of those options, but, as will be reiterated later, classes with the research team’s kinesiologist and individual walks were the most popular options.

The KEeP ACTIVe Club also included online social support with a private Facebook group, which was led by a trained kidney transplant patient partner (one patient partner for the French-speaking and another for the English-speaking group). After agreeing to participate in the intervention and providing consent, participants where then added to the private Facebook group, where they could interact with other participants, the patient partner and the kinesiologist. Figure 1 presents an overview of the activities of the KEeP ACTIVe Club and Figure 2 presents a visual representation of the intervention, as reported following the TIDieR checklist.²⁹

Figure 1.

Overview of the KEeP ACTIVe Club milestones.

Figure 2.

TIDieR reporting of the KEeP ACTIVe Club intervention.

In total, 18 participants (9 English and 9 French) participated to the physical activity and the Facebook private group. Both quantitative and qualitative data were gathered for evaluating the KEeP ACTIVe Club. Quantitative results will be presented separately. The KEeP ACTIVe Club was designed as a feasibility study. A position statement³⁰ about recommendations on physical activity for transplant patients, as well as previous research projects by our research team (where we showed there was a need to improve physical activity after transplantation^11,31 and to provide peer support),³² were the inspiration for the KEeP ACTIVe Club.

Qualitative Portion of the Evaluation of the KEeP ACTIVe Club

This study was an exploratory qualitative descriptive study using semi-structured interviews³³ with KTRs who participated in the KEeP ACTIVe Club, to stay close to their experiences and opinions.³¹ We used the consolidated criteria for reporting qualitative research checklist.³⁴ The McGill University Health Center (MP-37-2020-5824) and the Centre hospitalier de l’Université de Montréal (MEO-37-2020-8568, 19.328) Research Ethics Boards approved the study and all participants provided informed consent.

The recruitment and interviews were carried out between October and December 2021, just after the completion of the KEeP ACTIVe Club intervention. The 18 participants were invited to take part in the interview by email. Fifteen of them agreed to participate, but 1 declined because of health issues and 3 could not be reached to schedule the interview.

Eleven participants took part in an individual interview. Nine interviews were conducted by phone and 2 by videoconference, 6 in English, and 5 in French, by 2 members of the research team with experience in qualitative methods (F.B. and M.F.M.). The 2 interviewers had no relationships with the participants or with the KEeP ACTIVe Club. The interviews lasted around 30 (12-47) minutes and were digitally recorded and transcribed. Participants received $30 as a compensation for their participation. The interview transcripts were sent for review and approval to all participants. A member of the research team (M.F.M.) also double-checked the original audio files with the transcripts.

Topics covered during the interviews were outlined in an interview guide with open-ended questions developed by the research team and pre-tested by the 2 patient partners involved in the project. The questions addressed the following topics: (1) attitudes toward and experiences of their participation in the KEeP ACTIVe Club, (2) their perspectives of the educational session and online social networking, (3) the impact of the KEeP ACTIVe Club on their level of physical activity, and (4) their recommendations for the future versions of the KEeP ACTIVe Club. The interview guide was modified as new topics emerged from the interviews (based on the notes taken by interviewers) and from the research team’s discussions.³⁴

We used a qualitative description approach to describe transplant recipients’ experiences of the KEeP ACTIVe Club.^35,36 The goal of this approach was to stay close to the data and provide a comprehensive summary of the topic studied,³⁶ using thematic analysis,³⁷ while also allowing for new themes to emerge from the interviews.³⁸ The latest version of the NVivo (QSR International) software was used to facilitate analysis. Prior to coding the verbatim, the research team created the initial coding frame based on the interview grid to align it with the objective of this study, which was to capture the participants’ experiences and document the successes and pitfalls of the KEeP ACTIVe Club. New codes were then added to the coding frame based on the interview content. We took a deductive and an inductive approach to data analysis.³⁹ The research team met frequently to discuss the evolution of the coding frame and the advancement of data analysis. A member of the research team with expertise in qualitative methodology (M.F.M.) coded the interviews and no new codes were created after the sixth interview. The number of participants allowed for data saturation.³⁸ To assess the credibility, the rigor and the transparency of the coding process,^40,41 a research team member (A.A.) with experience in qualitative methods coded a portion of the transcripts (37%) and determined the level of intercoder reliability. Disagreements were discussed until a high level of agreement was achieved (93%).⁴² Coded quotes were then organized by theme and subtheme.

Results

Participants’ Characteristics

Eleven KTRs from 2 kidney transplant centers in Montreal (Quebec, Canada) took part in this study. Six of them took part in the English KEeP ACTIVe, whereas 5 of them were participating in the French one. There were 4 male and 7 female participants, with a mean age of 49.5 years. Ten of them underwent a single transplant and 1 participant had 2. All participants reported on history of cardiovascular disease or related risk factors, such as hypertension, diabetes, or hyperlipidemia. Five identified themselves as white, 3 as black, 2 as Middle Eastern, and 1 as Asian/South Asian. Among the 7 of the KEeP ACTIVe participants who did not take part to individual interviews, there were 6 men and 1 woman. Two of them were interested in participating but were unable to do so due to health concerns and the impossibility of scheduling the interview. Table 1 summarizes the participants’ characteristics.

Table 1.

Participants’ Characteristics.

Characteristics	N = 11
Genre
Male/female	4/7
Age (years ± SD)	49.5 ± 16.3Ranging from 28 to 70
Ethnic group
White	5
Black	3
Middle Eastern	2
Asian/South Asian	1
Employment status
Retired	4
Employed full time/part time	4
Unemployed	1
Student	2
Level of education
High school	1
Technical school or college	4
University	6
Annual family income
Less than $50 000	2
$50 001 to $100 000	4
More than $100 000	3
Prefer not to respond	2
Medical conditions (self-reported)
Hypertension	9
Diabetes	3
Hypercholesterolemia	4
Vascular disease (stroke, amputation, claudication, ischemic wound)	2
Heart disease (myocardial infarction, congestive heart failure, angina)	1
Smoking
Yes/no	1/10
Number of kidney transplants
½	10/1

Note. SD = standard deviation.

Qualitative Interviews

The themes identified during the interviews are presented in Table 2 with interview excerpts.

Table 2.

Themes Addressed During the Qualitative Interviews.

Themes and interview excerpts	n = 11
● Motivations to participate in the KEeP ACTIVe Club and expected impacts on their physical and psychological well-being ● “[My doctor] was always asking me you know if I was active, I said no, I don’t feel like it, I’m tired and blablabla, and [my doctor] said to me well there is an active, there’s the club, would you be interested in participating? I said well, ok, I will give it a try.” (Participant No. 1, male) ● “Especially at the beginning, you need that push a little bit to get moving ‘cause you are, you are still healing, and you are still, your body is adjusting to a new life really if you think about it.” (Participant No. 4, female) ● “During COVID, [. . .] I put some weight on because I hadn’t been able to go to the gym.” (Participant No. 5, male) ● “I felt very, very sedentary, even though I noticed that after my five years of dialysis and my second transplant, I don’t have exactly the same mobility as before in my legs; I don’t have the same ease of movement as before.” (Participant No. 7, female) ● “I had set myself a goal that, within six months, I would be able to get on my bike.” (Participant No. 9, female)“With the medications we have, everyone tends to gain weight and all that, so it helps to move around and not gain too much weight.” (Participant No. 10, female) ● “I figured there might be exercises for transplant recipients. You know, something that’s less demanding but can still help us get our physical lives back on track.” (Participant No. 11, male)	8
Experiences and perspectives about the KEeP ACTIVe Club Benefits of the physical activities offered by the KEeP ACTIVe Club ● “The group really helped me discover the old physical skills you know I had.” (Participant No. 1, male) ● “I saw this on my body. I can say that I had a lot of pain and it all disappeared.” (Participant No. 2, female) ● “I got more strength and even my husband found a difference. I was able to carry furniture with him, which I wasn’t able before.” (Participant No. 3, female) ● “Like in the gyms you know it’s a bit different, it was more adapted to our needs, you know? So, for me it was that, that motivation you know and the positive way. That was the most important, that motivation to keep active too.” (Participant No. 4, female) ● “I spoke to [the kinesiologist] a few times and, you know, [the kinesiologist] never pressured me to join the group. [. . .] And so, I think that that’s something that was really helpful, was that even though I didn’t go every time or I didn’t follow, [the kinesiologist] still reached out to me to see how I was doing in my fitness journey.” (Participant No. 6, male) ● “With the exercises on the Internet, they’re very, very general and there are certain movements that, well, after my first transplant, I was prohibited from doing [. . .]. There’s like a progression, but at the same time, it shows what we can do and what doesn’t put the kidney in danger.”(Participant No. 7, female) ● “When I had a question, I could send a text and they responded right away, right away. So it was really good, you know.” (Participant No. 8, female) ● “I quite liked it, it felt good.” (Participant No. 10, female)	11
Pitfalls of the physical activities offered by the KEeP ACTIVe Club ● “The schedule was a problem, it just didn’t work for me at all.” (Participant No. 9, female) ● “It didn’t help that we weren’t able to meet in person either.” (Participant No. 3, female) ● “I just felt that the missing part was, I thought at the beginning it was going to be a group, but in reality, it was more individualized.” (Participant No. 3, female)	9
Recommendations for a future version of the KEeP ACTIVe Club ● Organize in-person activities ● “You know in person it’s always, you know it’s always better.” (Participant No. 1, male) ● “I wish to see these people that I was with them 6 months face to face. Maybe in the future.” (Participant No. 2, female) ● “I wish we could of meet, met some of the people in person, you know, and go for like walks and things like that during Covid, but it was harder.” (Participant No. 6, male) ● “It would be great if this could be held in person.” (Participant No. 8, female) ● “ Obviously, in person would be, well, if it’s accessible, not too, there’s still a distance to go, but it’s always more motivating in person.” (Participant No. 9, female)	9
Organize different clubs based on the age of participants ● “I think what would be good is for, to increase intensity eventually.” (Participant No. 4, female) ● “Different levels might help people who are looking to get back on track or just want something a little more intensive.” (Participant No. 11, male)	6
Offer more sessions in the schedule ● “I would have like it to be, to be, to be like twice a week.” (Participant No. 1, male) ● “But if we could have more sessions, that would be great actually, more, more than just two days a week.” (Participant No. 4, female)	2
Addition of complementary information sessions to the training sessions ● “I would like another person to be able to talk to that person as well. Someone, someone with mostly, and you know, who would actually work in mental health.” (Participant No. 1, male) ● “It would be nice also I guess if there were sessions on, on nutrition or different things, more.” (Participant No. 3, female)	3
Impact of peer mentoring within the KEeP ACTIVe ClubA strong desire to participate in organized activities with other kidney transplant recipients ● “I said maybe they will, they will ask me things that I don’t know about. It’s I don’t know what, but I said why not? Why not? Let me face them, let me face myself, let me know better things about my situation, about how others live or what they do. ” (Participant No. 2, female) ● “To be part of a group that is in my situation, who can understand my needs, my, you know? And my limitations, and it just, and also this group we did actually got us like a little community going, you know?” (Participant No. 4, female) ● “I think it is critical, I mean we can meet, I mean no offense, doctors or nurses or whoever, but having someone with years of experience living with it, is, was, is so important.” (Participant No. 4, female) ● “In the sharing I hear another patient say that they just found out that they had a bit of rejection and they were going through treatments, and that was super helpful because the doctors had told me also that I had some and I was going to go through a year of IVIG (intravenous immunoglobulin) treatments and things like that, and I was like ok, well. When they initially told me, I felt so much guilt, I felt so much like I didn’t take care of my kidney well, and to know that, and I felt super alone, and I think that knowing that others have had rejection, was super helpful just to relieve that guilt from, for me at least.” (Participant No. 6, male)	5
Benefits of peer mentoring activities within the KEeP ACTIVe Club ● “But that group, that group were all, you know transplant recipients, even before I open my mouth, they really understood, you know? Because all of them went through it to actually some of the things I went through, you know?” (Participant No. 1, male) ● “This is the 1st time I meet other people who have kidney transplants, and it was a good opportunity to talk to the others and to know people that they have, or that they have kidney transplant like me.” (Participant No. 2, female) ● “We would talk at the end of the sessions sometimes as a group, and we would discuss a lot of things actually depending on the day. Especially with the pandemic, there were a lot of issues about the vaccine and all that, and we were all discussing.” (Participant No. 4, female) ● “The mental, without the mental, there is no physical, so that is the thing that is good about the Keep Active Club, is the, you know, the support.” (Participant No. 4, female) ● “ When I had a question, I could send a text and they responded right away, right away. So it was really good, you know.” (Participant No. 8, female) ● “Being together, that always motivates more than when we’re alone.” (Participant No. 10, female)	11
Perspectives on mentorship through the private Facebook group ● “I did some posting, but mainly it’s when, it’s when somebody is doing something like an exercise because the person always shares some, some of the pictures of where they have been, of where they are gone to just to walk, and I would encourage them and say you know congratulation and stuff like that.” (Participant No. 1, male) ● “A lot of times, I used to often and look at what they are doing, so to put some maybe notes and that’s it.” (Participant No. 2, female) ● “I was just getting spam, emails, turned off notifications, so it was, it’s just not good experience and I dislike the platform honestly.” (Participant No. 5, male) ● “In the Facebook group, you had to, they created organizations and meetings for the next sessions but [. . .] in my case, my Facebook group, every day I didn’t receive any notifications.” (Participant No. 11, female) ● “I think it might be, it might be important to extend it to others who don’t have access to Facebook or you know just the actual Internet. I don’t know how, but I think because there are many, many, many, many other people that might not have access to it and who might, who would need that as well.” (Participant No. 1, male) ● “It was good to know, before I used to feel that I’m outside these things, now I know what they are doing and if, I think that if I want to share something, I have only to call them or to tell them that I want to share, and it will be ok. Now I feel that I’m in it.” (Participant No. 2, female) ● “Super beneficial. I cannot, you know, seeing how older or transplant patients who have lots of experience and who pay attention to their fitness.” (Participant No. 6, male) ● “Given that we had to register on the Facebook page, we can be directly in contact with them to ask them advice about what we can do and everything.” (Participant No. 11, female)	11

Motivations to participate in the KEeP ACTIVe Club and expected impacts on their physical and psychological well-being

Participants viewed the KEeP ACTIVe Club as a motivator for engaging in regular physical activity. They mentioned that they were interested in training programs adapted for KTRs since the exercise programs found on the Internet or fitness classes in the gym involved movements not necessarily recommended for KTRs. Another important reason to participate in the KEeP ACTIVe Club was to keep their transplant healthy. They felt that their transplant was an immeasurable gift and that they had a responsibility to take care of the kidney. Also, many participants mentioned how the kidney transplantation and the COVID-19 pandemic had negatively impacted their health and physical activity routine and that this was a strong motivator to participate in the Club.

Experiences and perspectives about the KEeP ACTIVe Club

Benefits of the physical activities offered by the KEeP ACTIVe Club

As previously mentioned, participants could choose between 6 different options of physical activity during the 6-month intervention. They also had the opportunity to attend exercise sessions led by a kinesiologist who was also a KTR. Participants enjoyed the diversity of activities proposed by the KEeP ACTIVe Club. That being said, the exercise sessions led by the kinesiologist were the option preferred by the great majority of participants, since it was possible to adapt the sessions to their capacities and they felt reassured by the presence of a kinesiologist who could understand the reality of being a transplant patient. This allowed participants to gain confidence in their capacity to exercise and to increase the intensity of their physical activity over time. The training sessions consisted of aerobic, stretching, strengthening and balance exercises. The exercise sessions allowed some more recent transplant recipients to gain or regain physical strength after their transplant. One participant said, “After a couple of sessions, I was already on my own, I mean I was walking again” (Participant No. 1, male). Some of them also mentioned that their loved ones noticed their improved physical capacities. Finally, there was a realization for others of their ability to integrate physical activity in their daily lives, resulting in an overall desire and motivation to continue to be more physically active.

Pitfalls of the KEeP ACTIVe Club

It is also important to note that, despite the benefits of having a kinesiologist who was also a KTR and was keen to adapt exercises for participants, some of the participants missed group interaction. They would have liked more in-person meetings. Moreover, the small number of participants did not allow the development of classes adapted to different ages or physical capacity. Also, for participants who were working, some of the exercise session calendar was not adapted to their own schedules. Finally, some participants did not like that the sessions were conducted virtually and that they could not interact in person with the kinesiologist and the other participants.

Recommendations for a future version of the KEeP ACTIVe Club

Following this last point, one of the major recommendations brought fourth was to organize the future KEeP ACTIVe Club in person, which was impossible during the COVID-19 pandemic. A participant noted that in-person activities were always more inspiring and motivating. Meeting in person would have also allowed some of them to do activities together, such as a go for walks and engage in other programs offered as part of the KEeP ACTIVe Club. It was also suggested to organize different sub-groups based on the age of participants (for senior participants, for young adults, etc.). It was also emphasized that in a future version of the Club, there should be more sessions included in the schedule to hopefully accommodate different schedules. Finally, some participants suggested that sessions on healthy diet and on the psychological challenges related to the transplantation and coping strategies be added to the Club along with the training sessions.

Impact of peer mentoring within the KEeP ACTIVe Club

A strong desire to participate in organized activities with other KTRs

As transplant recipients, participants were highly keen to be part of a club where they could meet other KTRs. This desire to connect was particularly important in the context of the pandemic. One of them would say that they “wanted to be a part of something” (Participant No. 2, female) and learn about “how others live or what they do” (Participant No. 2, female). Improving their level of physical activity and connecting with others was viewed as one component of their post-transplant healing journey. As one participant mentioned, “After the person receives the kidney transplant, psychologically the person is not the same person, you know? You cannot give people pills and expect the person [. . .] just to be fine on his own” (Participant No. 1, male).

Benefits of the peer mentoring activities within the KEeP ACTIVe Club

Peer mentoring was viewed as a motivating factor to engage in physical activity. One participant said that peer mentoring “helps each other through not just [. . .], being active, but in general” (Participant No. 4, female). Participants really appreciated that the other participants as well as the kinesiologist could understand the limitations experienced by some patients and their realities. Peer mentoring was also viewed as a means to break the feeling of loneliness. Some participants mentioned that their relatives did not really understand the reality of living with a kidney transplant, but it was great to share their experiences with others that could understand. Also, the KEeP ACTIVe Club was for some participants the first opportunity, except for the transplant clinic waiting room, to meet other KTRs and one participant said, “that group, that circle was kind of a group therapy” (Participant No. 1, male).

Perspectives on the peer mentoring through the private Facebook group

Along with their physical classes and programs, the participants had access to a private Facebook group where they could share their own journey and interact with other participants, the kinesiologist and the patient partner. Participants expressed mixed feelings about the Facebook group and used it differently. For some of them, Facebook was an easy way to communicate with others, while others found “Facebook very intrusive” (Participant No. 5, male). Some of them were particularly active within the Facebook group and mentioned that the notifications from other participants were helpful. Some of them used the Facebook group to connect with the other KEeP ACTIVe Club participants. Others regretted that “not everybody really participated” (Participant No. 4, female) and it impacted negatively on the support they felt they received from the Club.

The Facebook group was viewed as a good way to mentor other patients. One participant mentioned, “the people in the group that were posting were mostly benefiting and building camaraderie from it” (Participant No. 5, male). Also, the Facebook group was a way to share a common reality and normalize their experiences. Although some participants expressed reservations about the Facebook group, it was viewed as an important part of future versions of the KEeP ACTIVe Club since it allowed participants to share their experiences with others. However, it was deemed important for participants to feel free to choose whether they want to share posts on the Facebook group.

Discussion

Current guidelines for solid organ transplant recipients state that structured exercise programs, or physical activities can be unsupervised and offered at home or in private fitness centers. However, specific recommendations on the amount of types of physical activity are not clear. In addition, transplant physicians provide vague or no recommendations for physical activity for KTRs.^18,30,43-45 The KEeP ACTIVe Club tried to address this gap. One key strength of the KEeP ACTIVe Club was the presence of the kinesiologist who was also a KTR and could understand the complex realities of the transplant journey. The KEeP ACTIVe Club also improved patients’ self-efficacy feeling⁴⁶ for being more physically active.

One of the major benefits of the KEeP ACTIVe Club was the support of other KTRs and the ability to connect with others who share the same realities. This was also viewed as a way to break isolation, which was particularly salient during the lockdowns associated with the COVID-19 pandemic. A recent qualitative study conducted with solid organ transplant recipients also showed that a digital health application aiming at improving physical activity should allow participants to share information and provide support and mentorship.⁴⁷ The peer support from other transplant recipients who could understand the realities of post-transplant life was identified as a need in other studies in different settings, and focusing on adopting healthy behaviors and increasing physical activity.^20,48 A recent qualitative study with transplant recipients has identified the peer support network as a facilitator to self-management after kidney transplantation.⁴⁹ The benefits of peer support for kidney transplant patients have already been documented, not only for improving physical activity.^20,50 Peer support and mentoring should probably be included in the post-transplant care to help patient self-management, including physical activity.

In our study, Facebook was chosen since it continues to be the most popular social media platform, with 77% of the Canadian population estimated to be active on Facebook in 2022.⁵¹ Facebook is also widely used for searching health information, learning from others and tracking progress.⁵² Social media could be a source of empowerment for patients, allowing them to regain a sense of control over their care and disease.⁵² Although social media has been widely used in recent years to develop physical activity interventions, it has been rarely used in kidney transplantation.^53,54 Social media interventions in kidney transplantation are mostly designed to increase awareness, provide information, and help patients to reach living kidney donors.^55-58 Participants in our study had mixed feelings regarding the use of this social media platform. However, this could have been influenced by the role played by the patient partner whose role was to moderate and lead the discussion in each group. Within the group where the patient partner was posting regularly about her physical activities and encouraging other participants, participants really appreciated the interaction and the social networking on the Facebook group.

Some recommendations can be made based on our results to improve future versions of the KEeP ACTIVe Club or any other intervention aiming at increasing physical activity among KTRs. First, it appears important to offer different, varied, and frequent exercise sessions that are adapted to the working schedules of participants. Second, participants did not have the same physical capacities, which made it very challenging to develop exercise sessions adapted to all the participants. Grouping patients with similar characteristics in terms of age and physical capacities could be another avenue to explore in the future. Patients also mentioned the need to include education about healthy lifestyle (including diet, mental health, sleep, etc.) in the intervention. Eventually, the pandemic forced us to hold online training sessions only. Although many people mentioned wanting to have in-person sessions, distance from the hospital and other comorbidities can make travel difficult for many KTRs.^47,59 Hybrid sessions that combine outdoor activities, such as walking, with online sessions could help alleviate these issues.

We recognize our study’s limitations. The COVID-19 pandemic modified our intervention and the conduct of the study, preventing face-to-face activities, and limiting the amount of contact participants could have with each other. Only 11 of the 18 patients who participated in the KEeP ACTIVe Club took part in the interviews. Another limitation is that those who took part in an interview were mostly women; in other words, those who declined the interviews were mostly men. Some studies have reported some sex differences between physical activity behaviors.^60,61 Therefore, it is possible that we did not capture the perspectives of men on the impact of KEeP ACTIVe Club and that patients who declined the individual interviews had different views and recommendations for a future version of the KEeP ACTIVe Club. That being said, we were able to reach patients who had reported numerous cardiovascular risk factors, and who therefore had different needs and overall physical capacities.

Conclusion

In conclusion, our qualitative study shows that an intervention designed to increase physical activity and provide social support with a patient partner is highly valued among KTRs. Although the training sessions did not meet all the participants’ expectations, the KEeP ACTIVe Club allowed participants to gain self-efficacy in their ability to be physically active. More importantly, the Club allowed them to meet other KTRs at different stages of their post-transplant journey and to discuss their realities as transplant patients. Participants had mixed feelings about the use of a private Facebook group to foster social support and interactions. In the future, it would be important to explore other social media platforms that could allow patients to interact safely with each other. Future and larger studies looking at the impact of an improved KEeP ACTIVe Club are needed to better document the long-term impact of this intervention on the cardiovascular health of KTRs and the impact of peer mentoring on sustaining physical activity.

Footnotes

Ethics Approval and Consent to Participate

The Centre hospitalier de l’Université de Montréal and the McGill University Health Centre research ethic boards approved the study. All the participants provided informed consent.

Consent for Publication

All the authors consented for publication.

Availability of Data and Materials

The data are available from the corresponding author upon reasonable request.

Author Contributions

M-FM participated in the conduct of the research and the data analysis, and in the writing of the manuscript. TJ-F participated in the research design, in the conduct of the research and the data analysis, and in the writing of the manuscript. AA participated in the data analysis and in the writing of the manuscript. FB participated in the conduct of the research and the data analysis, and in the writing of the manuscript. JB-G participated in the conduct of the research and in the writing of the manuscript. MC participated in the research design and in the writing of the manuscript. EI participated in the conduct of the research and in the writing of the manuscript. LM participated in the conduct of the research and in the writing of the manuscript. CMT participated in the conduct of the research and the data analysis, and in the writing of the manuscript. RS-P participated in the research design and in the writing of the manuscript. M-CF participated in the research design, in the conduct of the research and the data analysis, and in the writing of the manuscript.

Declaration of Conflicting Interest

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Marie-Françoise Malo, Aliya Affdal, Fabián Ballesteros, Catherine M. Tansey, Ruth Sapir-Pichhadze, and Marie-Chantal Fortin have no conflicts of interests to declare.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research project was funded by the CDTRP Research Innovation Grant. RS-P, M-CF, and TJ-F are Fonds de recherche du Québec—Santé research scholars. RS-P, TJ-F, and M-CF are Canadian Donation and Transplantation Research Program investigators. They also want to thank all the participants who took time to participate in this study.

ORCID iDs

Ruth Sapir-Pichhadze

Marie-Chantal Fortin

References

Wolfe

Ashby

Milford

, et al. Comparison of mortality in all patients on dialysis, patients on dialysis awaiting transplantation, and recipients of a first cadaveric transplant. N Engl J Med. 1999;341(23):1725-1730. doi:10.1056/nejm199912023412303.

Jardine

Gaston

Fellstrom

Holdaas

. Prevention of cardiovascular disease in adult recipients of kidney transplants. Lancet. 2011;378(9800):1419-1427. doi:10.1016/s0140-6736(11)61334-2.

Wyld

MLR

De La Mata

Masson

O’Lone

Kelly

Webster

. Cardiac mortality in kidney transplant patients: a population-based cohort study 1988-2013 in Australia and New Zealand. Transplantation. 2021;105(2):413-422. doi:10.1097/tp.0000000000003224.

Awan

Niu

Pan

, et al. Trends in the causes of death among kidney transplant recipients in the United States (1996-2014). Am J Nephrol. 2018;48(6):472-481. doi:10.1159/000495081.

Hart

Weir

Kasiske

. Cardiovascular risk assessment in kidney transplantation. Kidney Int. 2015;87(3):527-534. doi:10.1038/ki.2014.335.

Ponticelli

Favi

. Physical inactivity: a modifiable risk factor for morbidity and mortality in kidney transplantation. J Pers Med. 2021;11(9):927. doi:10.3390/jpm11090927.

Kang

Garber

Eaton

Risica

Bostom

. Physical activity and cardiovascular risk among kidney transplant patients. Med Sci Sports Exerc. 2019;51(6):1154-1161. doi:10.1249/mss.0000000000001886.

MacKinnon

Wilkinson

Clarke

, et al. The association of physical function and physical activity with all-cause mortality and adverse clinical outcomes in nondialysis chronic kidney disease: a systematic review. Ther Adv Chronic Dis. 2018;9(11):209-226. doi:10.1177/2040622318785575.

Neale

Smith

. Cardiovascular risk factors following renal transplant. World J Transplant. 2015;5(4):183-195. doi:10.5500/wjt.v5.i4.183.

10.

Janaudis-Ferreira

Tansey

Mathur

, et al. The effects of exercise training in adult solid organ transplant recipients: a systematic review and meta-analysis. Transpl Int. 2021;34(5):801-824. doi:10.1111/tri.13848.

11.

Ballesteros

Allard

Durand

Cardinal

Lalonde

Fortin

. Kidney transplant recipients’ perspectives on cardiovascular disease and related risk factors after transplantation: a qualitative study. Transplant Direct. 2017;3(6):e162. doi:10.1097/TXD.0000000000000679.

12.

van Adrichem

van

Zande

Dekker

Verschuuren

Dijkstra

van der Schans

. Perceived barriers to and facilitators of physical activity in recipients of solid organ transplantation, a qualitative study. PLoS ONE. 2016;11(9):e0162725. doi:10.1371/journal.pone.0162725.

13.

Janaudis-Ferreira

Mathur

Konidis

Tansey

Beaurepaire

. Outcomes in randomized controlled trials of exercise interventions in solid organ transplant. World J Transplant. 2016;6(4):774-789. doi:10.5500/wjt.v6.i4.774.

14.

Stanfill

Bloodworth

Cashion

. Lessons learned: experiences of gaining weight by kidney transplant recipients. Prog Transplant. 2012;22(1):71-78. doi:10.7182/pit2012986.

15.

Gordon

Prohaska

Gallant

Siminoff

. Self-care strategies and barriers among kidney transplant recipients: a qualitative study. Chronic Illn. 2009;5(2):75-91. doi:10.1177/1742395309103558.

16.

Zelle

Corpeleijn

Klaassen

Schutte

Navis

Bakker

. Fear of movement and low self-efficacy are important barriers in physical activity after renal transplantation. PLoS ONE. 2016;11(2):e0147609. doi:10.1371/journal.pone.0147609.

17.

Gustaw

Schoo

Barbalinardo

, et al. Physical activity in solid organ transplant recipients: Participation, predictors, barriers, and facilitators. Clin Transplant. 2017;31(4): 1–9. doi:10.1111/ctr.12929.

18.

Takahashi

Bostom

. Physical activity in kidney transplant recipients: a review. Am J Kidney Dis. 2018;72(3):433-443. doi:10.1053/j.ajkd.2017.12.005.

19.

Shi

Mansour

. “Kidney Brothers”: the case for peer support in kidney transplant. Kidney360. 2022;3(7):1275-1276. doi:10.34067/kid.0003032022.

20.

Pomey

Gallego

Affdal

Fortin

. Peer mentoring as an avenue to explore in kidney transplantation: kidney transplant recipients’ perspectives on peer mentoring. Transplant Direct. 2021;7(3):e672.

21.

Beauchamp

Scarlett

Ruissen

, et al. Peer mentoring of adults with spinal cord injury: a transformational leadership perspective. Disabil Rehabil. 2016;38(19):1884-1894.

22.

Allman-Farinelli

Nour

. Exploring the role of social support and social media for lifestyle interventions to prevent weight gain with young adults: focus group findings. J Hum Nutr Diet. 2021;34(1):178-187. doi:10.1111/jhn.12774.

23.

Muhammad

Allan

Ali

Bonacina

Adams

. The renal patient support group: supporting patients with chronic kidney disease through social media. J Ren Care. 2014;40(3):216-218. doi:10.1111/jorc.12076.

24.

Theurer

Stone

Suto

Timonen

Brown

Mortenson

. The impact of peer mentoring on loneliness, depression, and social engagement in long-term care. J Appl Gerontol. 2021;40(9):1144-1152. doi:10.1177/0733464820910939.

25.

Rastegar Kazerooni

Amini

Tabari

Moosavi

Peer mentoring for medical students during the COVID-19 pandemic via a social media platform. Med Educ. 2020;54(8):762-763. doi:10.1111/medu.14206.

26.

Anthony

Young

Ghent

, et al. Exploring the potential for online peer support mentorship: perspectives of pediatric solid organ transplant patients. Pediatr Transplant. 2021;25(5):e13900. doi:10.1111/petr.13900.

27.

Jerson

D’Urso

Arnon

, et al. Adolescent transplant recipients as peer mentors: a program to improve self-management and health-related quality of life. Pediatr Transplant. 2013;17(7):612-620. doi:10.1111/petr.12127.

28.

Smith

Petosa

. A structured peer-mentoring method for physical activity behavior change among adolescents. J Sch Nurs. 2016;32(5):315-323. doi:10.1177/1059840516644955.

29.

Hoffmann

Glasziou

Boutron

, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ. 2014;348:g1687. doi:10.1136/bmj.g1687.

30.

Janaudis-Ferreira

Mathur

Deliva

, et al. Exercise for solid organ transplant candidates and recipients: a joint position statement of the Canadian Society of Transplantation and CAN-RESTORE. Transplantation. 2019;103(9):e220-e238. doi:10.1097/tp.0000000000002806.

31.

Bednarczyk

Tansey

Fontaine

, et al. Community-based exercise program for solid organ transplant recipients: views of exercise professionals and patients. McGill J Med. 2021;19(1): 1–12.

32.

Pomey

Gallego

Affdal

Fortin

. Peer mentoring as an avenue to explore in kidney transplantation: kidney transplant recipients’ perspectives on peer mentoring. Transplant Direct. 2021;7(3):e672. doi:10.1097/txd.0000000000001130.

33.

Hunter

McCallum

Howes

. Defining Exploratory-Descriptive Qualitative (EDQ) research and considering its application to healthcare. J Nurs Health Care. 2019;4(1): 1–7.

34.

Tong

Sainsbury

Craig

. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-357. doi:10.1093/intqhc/mzm042.

35.

Sandelowski

. What’s in a name? qualitative description revisited. Res Nurs Health. 2010;33(1):77-84. doi:10.1002/nur.20362.

36.

Sandelowski

. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334-340. doi:10.1002/1098-240x(200008)23:4<334::aid-nur9>3.0.co;2-g.

37.

Vaismoradi

Turunen

Bondas

. Content analysis and thematic analysis: implications for conducting a qualitative descriptive study. Nurs Health Sci. 2013;15(3):398-405. doi:10.1111/nhs.12048.

38.

Green

Thorogood

. Qualitative Methods for Health Research. 4th ed. Washington, DC: Sage; 2018:420.

39.

Crabtree

Miller

. A template approach to text analysis: developing and using codebooks. In: Crabtree

Miller

, eds. Doing Qualitative Research. Newburry Park, CA: Sage; 1992:93-109.

40.

O’Brien

Harris

Beckman

Reed

Cook

. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245-1251. doi:10.1097/acm.0000000000000388.

41.

O’Connor

Joffe

. Intercoder reliability in qualitative research: debates and practical guidelines. Int J Qual Methods. 2020;19:1609406919899220. doi:10.1177/1609406919899220.

42.

Miles

Huberman

. Qualitative Data Analysis: A Source Book of New Methods. Première ed. Beverly Hills, CA: Sage; 1984:263.

43.

Gordon

Prohaska

Gallant

, et al. Longitudinal analysis of physical activity, fluid intake, and graft function among kidney transplant recipients. Transpl Int. 2009;22(10):990-998. doi:10.1111/j.1432-2277.2009.00917.x.

44.

Gibson

Gupta

Greene

Lee

Mount

Sullivan

. Feasibility and acceptability of a televideo physical activity and nutrition program for recent kidney transplant recipients. Pilot Feasibility Stud. 2020;6:126. doi:10.1186/s40814-020-00672-4.

45.

Pang

Lingham

Zhao

, et al. Physician practice patterns and barriers to counselling on physical activity in solid organ transplant recipients. Ann Transplant. 2018;23:345-359. doi:10.12659/aot.908629.

46.

Bandura

. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977;84(2):191-215. doi:10.1037//0033-295x.84.2.191.

47.

Mathur

Janaudis-Ferreira

Hemphill

, et al. User-centered design features for digital health applications to support physical activity behaviors in solid organ transplant recipients: a qualitative study. Clin Transplant. 2021;35(12):e14472. doi:10.1111/ctr.14472.

48.

D’Ambrosio

Toulouse

Bélanger-Marceau

, et al. Characteristics and motivation of solid organ transplant recipients attending the canadian transplant games. Transplant Proc. 2021;53(2):581-589. doi:10.1016/j.transproceed.2020.06.041.

49.

Memory

Wilkinson

Smith

Lightfoot

. A qualitative exploration of the facilitators and barriers to self-management in kidney transplant recipients. J Nephrol. 2022;35(7):1863-1872. doi:10.1007/s40620-022-01325-w.

50.

Taylor

Gutteridge

Willis

. Peer support for CKD patients and carers: overcoming barriers and facilitating access. Health Expect. 2016;19(3):617-630. doi:10.1111/hex.12348.

51.

Statista. Number of Facebook users in Canada from 2018 to 2027. https://www.statista.com/statistics/282364/number-of-facebook-users-in-canada/. Accessed April 19, 2023.

52.

Househ

Borycki

Kushniruk

. Empowering patients through social media: the benefits and challenges. Health Informatics J. 2014;20(1):50-58. doi:10.1177/1460458213476969.

53.

Lee

Ryu

. Usability of a new digital walking program for older adults: a pilot study. BMC Geriatr. 2023;23(1):193. doi:10.1186/s12877-023-03739-y.

54.

Rote

Klos

Brondino

Harley

Swartz

. The efficacy of a walking intervention using social media to increase physical activity: a randomized trial. J Phys Act Health. 2015;12(suppl 1):S18-S25. doi:10.1123/jpah.2014-0279.

55.

DuBray

Shawar

Rega

, et al. Impact of social media on self-referral patterns for living kidney donation. Kidney360. 2020;1(12):1419-1425. doi:10.34067/kid.0003212020.

56.

Henderson

. Social media in the identification of living kidney donors: platforms, tools, and strategies. Curr Transplant Rep. 2018;5(1):19-26.

57.

Henderson

Adler

Van Pilsum Rasmussen

, et al. How should social media be used in transplantation? a survey of the American Society of Transplant Surgeons. Transplantation. 2019;103(3):573-580. doi:10.1097/tp.0000000000002243.

58.

Kumar

King

Muzaale

, et al. A smartphone app for increasing live organ donation. Am J Transplant. 2016;16(12):3548-3553. doi:10.1111/ajt.13961.

59.

Castle

Greenwood

Chilcot

Greenwood

. Usability and experience testing to refine an online intervention to prevent weight gain in new kidney transplant recipients. Br J Health Psychol. 2021;26(1):232-255. doi:10.1111/bjhp.12471.

60.

Gomez

Burr

DiBello

Farris

. Understanding sex differences in physical activity behavior: the role of anxiety sensitivity. Ment Health Phys Act. 2021;20:100392. doi:10.1016/j.mhpa.2021.100392.

61.

Craft

Carroll

Lustyk

. Gender differences in exercise habits and quality of life reports: assessing the moderating effects of reasons for exercise. Int J Lib Arts Soc Sci. 2014;2(5):65-76.

KEeP ACTIVe Club Study: Kidney Transplant Recipients’ Experiences of a Physical Activity and Social Interaction Virtual Group

Abstract

Background:

Objective:

Design:

Setting:

Participants:

Methods:

Results:

Limitations:

Conclusion:

Keywords

Introduction

Methods

Description of the Intervention

Qualitative Portion of the Evaluation of the KEeP ACTIVe Club

Results

Participants’ Characteristics

Qualitative Interviews

Motivations to participate in the KEeP ACTIVe Club and expected impacts on their physical and psychological well-being

Experiences and perspectives about the KEeP ACTIVe Club

Benefits of the physical activities offered by the KEeP ACTIVe Club

Pitfalls of the KEeP ACTIVe Club

Recommendations for a future version of the KEeP ACTIVe Club

Impact of peer mentoring within the KEeP ACTIVe Club

A strong desire to participate in organized activities with other KTRs

Benefits of the peer mentoring activities within the KEeP ACTIVe Club

Perspectives on the peer mentoring through the private Facebook group

Discussion

Conclusion

Footnotes

Ethics Approval and Consent to Participate

Consent for Publication

Availability of Data and Materials

Author Contributions

Declaration of Conflicting Interest

Funding

ORCID iDs

References