Perceived barriers to and facilitators of being physically active during adjuvant cancer treatment

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Patient Education and Counseling xxx (2015) xxx–xxx

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Perceived barriers to and facilitators of being physically active during adjuvant cancer treatment Anna Henrikssona,* , Cecilia Arvinga , Birgitta Johanssona,b , Helena Igelströma , Karin Nordina,c a b c

Department of Public Health and Caring Sciences, Uppsala University, Box 564, 751 22 Uppsala, Sweden Department of Immunology, Genetics and Pathology, Uppsala University, Akademiska sjukhuset, Ing 78, 5 tr, 751 85 Uppsala, Sweden Department of Public Health, Sport and Nutrition, University of Agder, Postboks 422, 4604 Kristiansand, Norway

A R T I C L E I N F O

A B S T R A C T

Article history: Received 20 September 2015 Received in revised form 20 December 2015 Accepted 25 January 2016

Objective: The aim was to describe cancer patients’ perceived barriers and facilitators of physical activity during adjuvant cancer treatment. Methods: Semi-structured focus group interviews were conducted with patients with breast cancer (n = 9) and colorectal cancer (n = 1) and prostate cancer (n = 8) undergoing adjuvant cancer treatment. To capture perceived barriers and facilitators before starting treatment, individual interviews with women with breast cancer (n = 5) were also conducted. 23 patients in total, were interviewed, and the transcribed interviews were analysed with qualitative content analysis. Results: Three categories emerged: “Physical and emotional barriers”—addresses experiences of sideeffects, co-morbid conditions and emotional barriers, preventing physical activity (PA). “Perspective and attitudes”—how self-efficacy, self-image, preference, concerns, expectations, experience and new perspective regarding one’s health influencing PA. “Support and practicalities”—addresses needs of support and information and how practicalities could be a barrier to PA. Conclusions: Several barriers were side effects of oncological treatment, which can be alleviated by PA. Another barrier was concerns regarding safety of PA during treatment. Communicating benefits and safety of PA to cancer patients early as possible after diagnosis might be beneficial. Practice implications: Information about PA from health care staff should be given early after diagnosis and as a part of standard care. ã 2016 Elsevier Ireland Ltd. All rights reserved.

Keywords: Physical activity Exercise Adjuvant cancer treatment Barriers Facilitators

1. Introduction Patients with cancer experience adverse symptoms and side effects from their disease and its treatments; therefore, identifying ways to prevent or reduce side effects is important [1]. Many patients with curable disease are offered adjuvant cancer treatment (e.g. chemotherapy, to reduce risk of cancer recurrence) and are therefore at risk of experience side effects from treatment. Physical activity (PA) has been introduced as a feasible and safe therapy to help reduce common adverse effects of cancer and cancer treatments. The American College of Sports Medicine has concluded that exercise for patients receiving adjuvant cancer treatment is safe and improves physical function, quality of life, cancer-related fatigue and, overall, has the same benefits regarding improving and maintaining health as for persons who do not have

* Corresponding author. E-mail address: [email protected] (A. Henriksson).

cancer [2]. There are also some studies indicating that exercise during adjuvant chemotherapy treatment may improve treatment completions rates [3]. PA recommendations for cancer patients are aerobic exercise in 150 min of moderate intensity/week (or 75 min in high intensity/week) and resistance training 2 times/week [4]. Previous studies report that patients with cancer have positive experiences of being physically active during adjuvant treatment. One exercise program helped women with breast cancer feel better and regain control of their bodies and their lives [5]. Similarly, Maley et al. [6] found that no female cancer survivors expressed negative attitudes or uncertainty regarding PA as a way to promote wellbeing. In contrast to these findings of positive attitudes and experiences, observational data suggest that few cancer patients actually comply with PA recommendations. Rather, PA is known to decrease during adjuvant treatment [7–9]. In patients with breast cancer, estimates of compliance with American guidelines for health-enhancing PA range from 35% to 70% [10–12]. In patients with colorectal cancer adherence to PA recommendations range

http://dx.doi.org/10.1016/j.pec.2016.01.019 0738-3991/ ã 2016 Elsevier Ireland Ltd. All rights reserved.

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from 17% to 33% [13,14] and men with prostate cancer seem to be more physically active [13], however one study following men with prostate cancer reported that only 12.5% was sufficiently active 10.8 months post curative treatment [15]. Shang et al. [16] reported a low adherence rate (32.3%) in an intervention group in a randomized controlled trial and concluded that adherence was also an issue among patients who participated in a study of exercise. The authors identified a relationship between reduced adherence to the exercise and symptoms such as fatigue and mood disturbances. Previous research has identified behavioural change techniques such as goal setting and selfmonitoring as determinants in studies that report good adherence to exercise interventions [17]. High levels of expressed acceptance and a positive attitude towards PA in contrast to a low rate of patients meeting with PA guidelines suggest that there are barriers that prevent patients with cancer from being physically active. In most studies regarding cancer patient’s experience of PA during adjuvant cancer treatment, the participants are usually interviewed as a part of the evaluation after an exercise intervention [18]. The participants in these studies have agreed to participate in an intervention and may be a selective group with high interest in exercise and their views may not be representative for patients in standard care. Therefor conducting interviews with participants during adjuvant cancer treatment only receiving standard care is of importance in

order to include a broader representation of patients (e.g. including patients with high motivation and low motivation for PA). An increased understanding of perceived barriers and facilitators is essential if health care staff are to help patients overcome perceived barriers, and create theoretical models for barriers and facilitators which can be empirically evaluated in intervention studies. The aim of this study was to explore cancer patients’ perceived and experienced barriers to and facilitators of being physically active and exercising during adjuvant cancer treatment. 2. Methods 2.1. Sample A purposeful sample of patients with curative breast, prostate or colorectal cancer receiving adjuvant cancer treatment (e.g. chemotherapy or/and radiation therapy or/and endocrine therapy) was recruited at a university hospital in Sweden during September, October and December 2013. To capture the perceived barriers to and facilitators of exercise of patients with cancer before they started treatment, five women with curative breast cancer who had not yet started treatment were also recruited in January 2014. Patients whom already finished their adjuvant treatment or could not speak or understand written Swedish did not fulfil the

Table 1 Participants’ characteristics.

Age, years mean (min–max) Type of cancer Breast Prostate Colorectal Comorbid conditions Asthma/chronic obstructive pulmonary disease Arterial filibration Hypertension Arthritis Back problems Diabetes mellitus type 1 Ongoing treatment Radiation/endocrine Chemotherapy Endocrine Level of education Primary education Secondary/high school education College/university education

Focus group interviews (women n = 10)

Focus group interviews (men n = 8)

Individual interviews (women n = 5)

59.5 (42–74)

65.5 (61–70)

56.6 (49–64)

9

5 8

1

2 2 1

1 3

3 2

1 1

1 9

3

4a 1a

5

1 2 7

1 4 3

3 2

missing: 2 2 3 3 missing: 2 8

4 4

1 3 1

4 2 2

5

81.5 (49–100)

71.5 (28–94)

84.0 (68–97)

Motivation to be physically active VAS mm median (min– 93.0 (49–100) max)

69.0 (43–91)

80.0 (49–98)

PA in the last 6 months Aerobic exercise (at least medium intensity) Not at all <150 mins/week 150 mins/week Resistance training Not at all
a

Planned treatment.

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Table 2 Examples of interview questions. Main question

Follow-up question

How is your daily life affected by the cancer and its treatment?

Effects on daily activities? Effect on PA and exercise? What barriers to and facilitators of PA are there?

How are your health and wellbeing affected by the cancer and its treatment?

Effects on physical function?

inclusion criteria. Patients were excluded if they had cognitive or severe psychiatric disorders. During the recruitment, 102 patients were identified as eligible. Patients declined to participate most commonly because of long travel distances to the university. Of the patients approached, 32 agreed to participate. Of these 32, 9 were not able to participate in the interviews because the times for the interviews did not suit or because of illness at the time of their interview (mainly infections). Five focus group interviews were conducted with 10 women and 8 men (with separate groups for men and women). Five women were interviewed individually as it was not feasible to gather a focus group before the participants started their treatment because of the short interval between recruitment and starting treatment. In total, 23 participants were interviewed. Participant recruitment continued until no new information seemed to emerge from the interviews. 2.2. Procedure Patients received verbal and written information about the study from a research assistant. Patients who agreed to participate were contacted to schedule an interview. Before the interviews were conducted, all participants signed a written consent form. All interviews were held at the university and were recorded using a digital audio recorder. The focus groups lasted for approximately one hour. CA conducted four of the focus groups and all of the individual interviews. All focus groups and individual interviews were conducted in Swedish. AH was present and took notes during all of the focus groups. Two nursing students interviewed one of the focus groups as a part of their joint student thesis. Prior to the interview, the nursing students received special tuition from CA regarding interviewing focus groups. 2.3. Data collection Information on diagnosis and planned treatment was obtained from hospital records. Information on age, sex and education was obtained from self-reported forms. The participants also answered a questionnaire regarding their levels of PA in the previous six months, their motivation for being physically active during adjuvant treatment and their perceived ability to be physically

Experience of pain? What barriers to and facilitators of PA are there?

active during adjuvant treatment. Motivation and perceived ability were measured using a 100 mm visual analogue scale (VAS). Medical and demographic data are presented in Table 1. The interview guide contained open-ended questions about how daily life, the disease and its treatments affected daily activities and the patients’ ability to be physically active and exercise. The focus of the questions was on PA and exercise (Table 2). The interview guide was pilot tested on the first focus group. The participants’ answers covered the research question and they understood the questions asked; therefore, no adjustments were made in the interview guide and the interview guide was used in all focus groups and individual interviews. 2.4. Data analysis The interviews were transcribed verbatim and analysed according to Graneheim and Lundman’s guidelines for qualitative content analysis [19]. The analysis of the transcribed text was done in multiple steps. First, the text was read through several times, this was done to become familiar with it and get a sense of its whole. The text was then divided into content areas. Content areas are defined as a part of a text, which covers a specific and explicit topic. In this study, the content areas that corresponded to the study’s aim, i.e. PA and exercise, were identified, and meaning units were extracted and condensed from them. The condensed meaning units were coded to enable easy identification while developing categories (Table 3). The categories were developed during several group discussions between the authors. Through these, consensus regarding the categories and theme was reached between the authors. The analysis was carried out using a low level of interpretation and focused mainly on the manifest content. The group of authors consists of three nurses, a physiotherapist and a psychologist, and the group’s expertise includes experience of cancer care, behavioural medicine and exercise medicine. Within the research group, previous experience and knowledge regarding the qualitative research method is comprehensive and the authors are experienced in conducting interview studies. 3. Results In the analysis of the transcriptions, we found three categories and a total of 12 subcategories.

Table 3 Examples of condensed meaning units and coding. Meaning unit

Condensed meaning unit

Considering side effects – never exercise at a specific time “Well, then, I can also start thinking, why have I got it, why have things Why have I got it, can I change turned out this way, what’s happened, can I change something?” something “While I think that if you are going to exercise and work full time . . . Exercise and working full there’s just not enough time.” time – not enough time “Considering the side effects and the problems I experienced, I could never exercise at a specific time during that period.”

Code

Subcategory

Category

Side effects prevent planning of exercise

The side effects from treatment

Can I change something Full time job

Teachable moments

Physical and emotional barriers Perspectives and attitudes Support and practicalities

Environmental support and practical issues

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3.1. Physical and emotional barriers The participants described how the side effects of treatment, co-morbid conditions and emotional distress constituted barriers to PA and exercise. 3.1.1. The side effects of treatment The participants had, in various ways, experienced side effects from cancer treatment that affected their ability to be physically active and exercise during treatment. As an example, participants treated with intravenous chemotherapy experienced extreme fatigue in the days and sometimes weeks after rendering them almost completely inactive during this part of the treatment cycle. (P1)“I was completely knocked out and fatigued, I couldn’t . . . get out of bed, I just . . . one week I just slept and stayed in bed.” For men with prostate cancer, their most common side effects, i.e. symptoms of bladder and bowel, were caused by radiation treatment. These side effects made it difficult to plan activities and the men felt reluctant to leave home and partake in activities in public without knowing where the nearest toilet was. This caused isolation and inactivity. (P2) “Considering the side effects and the problems I experienced, I could never exercise at a specific time during that period.” Men undergoing adjuvant endocrine treatment also experienced a decrease in muscle strength, which was most noticeable during exercise. Other examples of side effects that hampered PA were infections, pain, sore and abraded feet and reduced aerobic fitness. 3.1.2. Co-morbidity Examples of the co-morbid conditions that participants had and which they felt affected their ability to be physically active were unstable diabetes mellitus, atrial fibrillation and orthopaedic conditions such as osteoarthritis. 3.1.3. Emotional distress Participants described feelings of listlessness and difficulty keeping their spirits up when at home waiting for their treatment to be over. When experiencing these feelings, they found it difficult to get things done and stay active. (P3) “I think it’s easy to sink into some kind of, not apathy, but you feel kind of small . . . and you do nothing even though you really should.” 3.2. Perspectives and attitudes Perspective and attitudes is a category that contains five subcategories regarding self-efficacy and self-image, exercise preference, concerns and expectations about PA, experience of PA and teachable moments, which includes gaining a new perspective regarding one’s health. 3.2.1. Self-efficacy and self-image Some participants did not believe they could exercise more intensively than walking. Others said that they did not like exercising or perceived themselves as a person who does not exercise. (P5) “[Exercising] I’m allergic to it. My kids are the kind who do it every day but I’ve never been a sporty type, it has never appealed to me at all” Similarly, feeling awkward about being seen in a changing room with no hair or with a scar could make patients feel reluctant to go to a training facility. Experiencing one’s body ageing was perceived

as a barrier to exercise, and going to a gym was viewed as something reserved for the younger population. 3.2.2. Preference of exercise Some said they would prefer to exercise with others in the same situation as themselves, and that it would help them feel more motivated.Someexpressedapreferenceforexercisingalone.Thetype of preferred exercise was also important to the participants, it could determine if a person partook in an exercise intervention or not. (P 6) “And you have to do something you enjoy; it must be fun. And you must feel comfortable doing it, rather than someone telling you that you have to work out, which you hate, nothing good can come of that.” 3.2.3. Concerns and expectations about PA Concerns about side effects from treatment were common, especially before starting treatment or if about to change treatment. Fears mostly regarded not knowing what side effects participants would experience and how they would be affected. Participants who received intravenous chemotherapy were afraid of feeling nauseous or faint if they exercised. These concerns made them reluctant to engage in any study or physical exercise program before they knew what impact the treatment would have on them. (P3) “But surely you are prevented, I also think when it’s unclear, how the heck would it affect me . . . you hear about all the side effects” Participants expressed their positive expectations of PA; for instance, exercise could be used as a way to increase one’s strength, lose weight, help alleviate co-morbid conditions and promote physical and mental health. (P3) “Then there’s this other thing . . . exercise is almost like medicine, because that’s what it becomes. You need to have a strong body to cope with your next treatment, so it’s much better to start the next course of treatment, with a bit more power than if you just had just laid on the sofa, watching reruns.” 3.2.4. Experience of PA Some of the participants had positive experiences of PA, which increased their motivation, and some had negative experiences that posed barriers. (P8) “No, I haven’t done any exercise. Gym class at school was the only time and it felt good when that finished. So there’s been nothing since then.” 3.2.5. Teachable moments For some participants, being in treatment was a time when they reflected on why they had cancer and they started to think about whether they could change their lifestyle. (P10) “Well, then, I can also start thinking, why have I got it, why have things turned out this way, what’s happened, can I change something?” The participants expressed interest in trying new things and also establishing new priorities in their lives, focusing on themselves and their health. (P12) “I see this as a matter of priority . . . if you do this maybe you should prioritise and I feel now that . . . somehow I need to deal with this.” 3.3. Support and practicalities The participants spoke of various types of support for being physically active; from overprotective and inhibiting support, a

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lack of support in their surrounding environment and support from health care personnel. They also described their own strategies for being physically active. 3.3.1. Inhibiting care Participants described how family and friends could be overprotective and over caring to the point that it inhibited their PA behaviour. They were getting too much consideration, even for small daily tasks, which rendered them inactive. Similarly, family members expressed concern that more rigorous PA like gardening would have a negative impact on their health; therefore, the participants avoided these kinds of activities. (P3) “Being considered ill when you actually theoretically are not, that’s what makes physical activity a little more difficult. You receive unnecessary consideration; instead you should have someone who pushes you . . . ” 3.3.2. Environmental support and practical issues A lack of support in their surrounding environment, such as not having access to training facilities close to home or work, or finding it difficult to get to and from the gym, was a barrier to exercise. Practical issues regarding not knowing what clothes to wear when exercising, or not having time to exercise because of working full time were also mentioned. (P13) “While I think that if you are going to exercise and work full time . . . there’s just not enough time.” Wearing a peripherally inserted central catheter (PICC), a type of intravenous access, prevented patients from swimming and, as a consequence, was an obstacle to some of the participants’ regular PA during adjuvant treatment, as swimming is not allowed while a PICC is in place. 3.3.3. Motivational support The participants expressed a high level of confidence in the information provided by health care professionals and they felt that receiving information regarding the benefits of PA could increase their motivation to be active during treatment. (P14) “However, the doctor I met before I started treatment said resting wouldn’t make me better from the fatigue I might get, and so I should try to stay active. So that’s what I’ve done from the beginning. It’s very good.” In contrast to this, some participants said that they were not given any information and that they would have liked to receive information about what is safe to do during adjuvant treatment. They believed that if they had had more information about what they could expect, it might have reduced their anxiety and helped them to be more active at the beginning of their treatment. (P3) “I could have used someone who explained a bit more, because I thought everyone became very nauseous, and it – this is how it turned out . . . ” The participants expressed a wish to receive professional help to be active. This would help their motivation and make PA feel safer. Also, participating in an exercise program could help them create routines and prioritise exercise; participating in an exercise study was seen as an opportunity to start a more active life. 3.3.4. Strategies Despite experiencing barriers, the participants described how they developed strategies to do some PA. These were goal setting, strategies to maintain energy levels throughout the day, doing things that they enjoyed and making the most of the periods when they felt at their best.

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(P16) “And then you come back . . . Now is my best week and next week is the next treatment, so right now I’m taking the opportunity to go to zumba and walk the dog and do everything I’ve got time for so that I can get through next week.” 4. Discussion and conclusion 4.1. Discussion The results revealed that several factors influence patients’ ability to be physically active and exercise during treatment, most of these are barriers, some are facilitators. Common barriers mentioned were side effects from treatment and previous comorbid conditions, which is a similar result seen in other interview studies conducted with breast cancer patients after exercise interventions [20,21]. Several barriers addressed by participants can be alleviated by PA [2,22,23]. This implies that interventions aimed at reducing side effects from treatment should be started as soon as possible after diagnosis. Furthermore, the participants experienced good and bad periods related to side effects during treatment. This should be considered when helping patients plan their PA. The health care staff can also make things easier for patients by considering practical issues. For instance, when choosing what type of intravenous access to use, the patient’s preferred PA could be considered. As well as considering what type of PA patients like, other preferences such as exercising alone or with other patients may be important, for instance, a cross-sectional study found that 37% of prostate cancer patients preferred to do aerobic exercise alone, 24% in a group and 23% with family or friends, implicating a need for individually tailored programs [24]. Some patients may feel reluctant to go to a training facility because of their selfconsciousness related to scars or the side effects of treatment. Offering these patients somewhere to exercise in a relaxed atmosphere with other patients in the same situation as them might help overcome this barrier [18]. Other practical aspects like patients wishing to work during treatment, or not having access to training facilities should be considered when helping patients to plan exercise. Even though undergoing treatment is a challenging time, findings from this study suggest that patients with cancer may be susceptible to lifestyle interventions during this period, and that taking advantage of ‘teachable moments’ is important. Therefore, early exercise interventions, even before starting treatment, may be feasible for most patients with cancer [25]. The results imply that information about the benefits and safety of PA for patients with cancer is imperative for motivating and facilitating PA during adjuvant treatment. A lack of information regarding PA during treatment may cause patients to feel unsure about what they are allowed and able to do. Inhibiting care from friends and family may also be prevented by providing adequate information. Patients should be informed of current recommendations regarding PA and that exercise is a vital and feasible component in the management of their health-related quality of life [23]. Nyrop et al. [26] investigated the frequency of PA communication between the care provider (oncologist or nurse) and patients with breast-, colon- and prostate-cancer, and found that it were low (35%). Previous research show that if colorectal cancer patients could recall being given advice regarding PA they would be more likely to meet with self reported PA activity guidelines (25% in the given advice group vs. 20% in the non-advice group) [27]. Moreover, recent research suggests that information about PA during cancer treatment is optimised if a motivational aspect is included [28].

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Participants expressed a need for professional support to help them be active during this period, saying that this would help their motivation and make PA feel safer. However, there is not, as yet, any consensus regarding what this support should include for providing the best support, especially for long-term maintenance of PA [29]. According to previous research, the most salient modifiable predictors are readiness and intention to change, selfefficacy for PA and perceived behavioural control [17,30–33]. These are important aspects in behavioural medicine support targeting physical activity behaviour. Using behaviour change techniques comprising both motivational and self-regulatory components and functional behaviour analysis could help to reduce barriers such as low self-efficacy and also help patients challenge pre-existing negative misgivings regarding PA. Kampshoff et al. [33] identified exercise history as a determinant of exercise adherence and maintenance in cancer patients. Even though exercise history is a non-modifiable factor, it is an important aspect to enquire about, since previous experience of PA and exercise could affect a person’s self-efficacy. This highlights the need to explore previous exercise experience in order to identify negative experiences and low self-efficacy. Husebø et al. [34] suggest that supporting patients’ self-efficacy towards changing health behaviour and considering the impact of treatment-related side effects may reduce perceived barriers to PA in women with breast cancer. Even though the results suggest providing patients with more information regarding PA and exercise and enhancing support for a successful implementation, more research is needed concerning both exercise principles and effective behavioral change techniques [18]. Also more research is needed regarding increasing the frequency of PA communication between health care personnel and patients [26] and investigating the optimal mode of information delivery [27].

be alleviated by PA. To be physically active, before the onset of side effects from treatment may be beneficial, and therefore, consistent information from health care staff regarding the benefits and safety of PA, might help reduce concerns regarding the safety of exercising during treatment. This information should be given early after diagnosis and as a part of standard care; however more research is needed to find efficient ways to improve the frequency of PA communication between health-care staff and patients. To help cancer patients overcome barriers such as low motivation and low self-efficacy to exercise during adjuvant treatment, professional support, including behavioural medicine support, may be effective and should be evaluated.

4.1.1. Method discussion A disadvantage of conducting focus group interviews is that participants may feel reluctant to address intimate concerns and, therefore, important information about such barriers may be lost. It was not feasible to convene focus groups when interviewing patients before they started adjuvant treatment; instead, individual interviews were conducted with these participants. This may have affected the participants since any benefits from group interactions were lost in individual interviews. However, the information supplied by patients before starting treatment was considered important and, thus, mixed interview methods were used. After conducting five focus groups and five additional individual interviews, no new relevant information seemed to emerge. Recruiting patients with colorectal cancer was difficult, and this, for two reasons. Firstly, there were few who received adjuvant treatment, and secondly, few among the eligible patients were willing to participate. Thus, only one person with colorectal cancer participated in this study. This limits the transferability of the results to patients with colorectal cancer since more information and experiences specific for these patients might have emerged had there been more participants. Apart from the abovementioned considerations, the study sample consisted of patients of various ages, socioeconomic statuses and a mixture of patients meeting and not meeting the guidelines for recommended PA. Hopefully, this distribution increases the transferability to a wide range of patients.

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4.2. Conclusion and practice implications In this study, several of the barriers to PA were side effects from oncological treatment, which, according to previous research, can

Ethical approval This study was approved by the Regional Ethical Review Board in Uppsala, Sweden (registration number: 2013/248). Conflict of interest All authors declare that they have no conflict of interest. Acknowledgments The Phys-Can feasibility study was funded by the Swedish Cancer Society and the Swedish Research Council. A special thank you to Viktor Knaust and Viktor Frykman for transcribing the interviews and conducting one of the focus group interviews and, above all, many thanks to the participants for giving their time and sharing their experiences, thus, making this research possible. References

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Please cite this article in press as: A. Henriksson, et al., Perceived barriers to and facilitators of being physically active during adjuvant cancer treatment, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.01.019