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ORIGINAL ARTICLES: SUPPORTIVE CARE

Feasibility and acceptability of active book clubs in cancer survivors – an explorative investigation

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Pages 471-478 | Received 09 Aug 2016, Accepted 21 Dec 2016, Published online: 17 Jan 2017

Abstract

Background: While the increasing number of people surviving cancer is promising, the long-term health effects warrant broad, innovative interventions. We investigated the feasibility and acceptability of a 24-week intervention called ‘Active Book Club’ comprising audio book listening, pedometer walking and supervised book club meetings.

Material and methods: An exploratory and descriptive design was applied. Qualitative data included baseline and post-intervention focus group interviews as well as post-intervention individual interviews. The study also included data on retention, attendance, and adherence. Seventeen self-referred cancer survivors with various oncological and sociodemographic backgrounds were included.

Results: Eight (47%) participants completed the entire intervention. Their median attendance at the book club meetings was eight [interquartile range (IQR) 6–9] of nine possible, and they reached the walking step goal in a median of 11 (IQR 7–12) of the first 12 weeks, and seven (IQR 1–10) of the last 12 weeks. The qualitative analysis revealed five themes including: Motivation and expectations (i.e. reasons for enrollment), Attentive listening (i.e. experiences of the audio book format), Affected by the story (i.e. experiences of the content of the books), Group involvement (i.e. experiences of the book club meetings) and Walking regularly (i.e. experiences of the walking program). Overall, findings revealed that while audio books may bring new meaning to physical activity and serve as a relief from own concerns, certain stories may affect some individuals negatively. The substantial dropout rate, however, suggested that modification is necessary and that patient involvement in choice of literature may be critical to enhance acceptability.

Conclusion: The ‘Active Book Club’ represents a novel psychosocial intervention potentially supporting physical activity adoption and mental health in cancer survivors. However, several issues related to feasibility and acceptability including choice of literature genre, format and supervision of book club meetings need to be considered before larger scale clinical trials are initiated.

Due to a growing and ageing population, substantial advances in the detection of cancer and improved treatments, the number of cancer survivors is increasing worldwide. Currently, two-thirds of adults diagnosed with cancer are expected to survive for more than five years from the time of diagnosis [Citation1]. Consequently, there is an increasing focus on survivorship care.

It is well documented that a cancer diagnosis can give rise to considerable psychological distress [Citation2]. As such the prevalence of serious psychological distress is found to be 5.6% in long-term survivors (>5 year) of adult-onset cancer, this is significantly higher than the prevalence of 3% in people without a cancer diagnosis [Citation3]. Psychological distress is found to have a negative impact on medical compliance and may negatively influence health behavior [Citation4]. Studies on the effect of low-intensity psychosocial interventions, including self-help groups, emphasize the value of ready access to non-invasive and inexpensive treatment while simultaneously avoiding the potential stigma of specialist referral [Citation5,Citation6]. Moreover, research indicates that interventions based on theories and techniques derived from stories, story reading and/or storytelling may reduce depressive symptoms in individuals with a diagnosis of depression [Citation7]. Accordingly, narrative-based interventions may promote coping in cancer care [Citation8] and encourage maintenance of exercise behavior in cancer survivors [Citation9,Citation10].

Reading or listening to stories, however, typically involves sedentary behavior, which is in opposition to existing physical activity guidelines for cancer survivors, which recommend avoidance of physical inactivity [Citation11]. As a result, cancer survivors are encouraged to match the guidelines for healthy individuals, that is, at least 150 minutes of physical activity at moderate intensity per week [Citation11], but a large proportion of cancer survivors fail to adhere to the guidelines [Citation12]. Several barriers to physical activity in cancer survivors have been reported, and studies document that a majority of cancer survivors prefer low-to-moderate intensity home-based activities that can be performed individually [Citation13].

As such, there is an increasing demand for multimodal interventions that simultaneously can contribute to increased mental health and promote regular physical activity among cancer survivors. In the current study we coupled existing knowledge on the non-stigmatizing potential of a reading group and the beneficial effects of storytelling, reading literary fiction and physical activity to develop an innovative intervention designed to improve mental health and promote physical activity in cancer survivors. Thus, the aim of this study was to explore the feasibility and acceptability of an intervention consisting of listening to audio books, pedometer walking and book club meetings.

Material and methods

Design

The study applied an exploratory and descriptive design including qualitative interviews and data on retention, attendance and adherence.

Sampling and recruitment

Criteria for inclusion in the study were ≥18 years of age, cancer survivor, completion of primary treatment (chemotherapy, radiation therapy, and/or surgery) and the willingness and ability to travel to the study site. We aimed at recruiting 15 participants with the primary goal to assess feasibility (i.e. practicality) and acceptability (i.e. relevance and tolerability) of the intervention. Participants were recruited through advertising on websites such as those of the Danish Cancer Society, patient advocacy groups and Facebook. Interested participants were encouraged to contact the investigators by phone or e-mail and were then provided written and verbal information about the study. Interested and eligible participants were invited to a personal meeting at the study site to receive further information on the study, provide informed consent and for final enrollment into the study.

Intervention: Active Book Club (ABC)

The ABC intervention comprised listening to a fiction audio book while following a home-based progressive walking program over 24 weeks. The audio book was subsequently discussed in a supervised book club group (details follow). During the 24-week intervention period participants were lent an iPod nano 7th generation (©Apple Inc.) that included audio books and a pedometer. Participants were encouraged to listen to their audio books while walking.

Audio books

In cooperation with an expert in Danish modern literature (Nanna Mogensen, MA; anchorwoman of a National Broadcasting book review program) a range of audio books was selected in advance. The selection consisted of 10 modern books of fiction by Danish authors, including novels and collections of poems and short stories. Recurring themes included identity, personal choices, how to create and live a good life, and interpersonal relationships. At each book club meeting the participants jointly selected the book from the pre-determined list that they would listen to prior to their next meeting.

Walking program

At the first individual meeting with the investigators each participant was introduced to a home-based walking program covering the entire intervention period that comprised continuous progression of the intensity and frequency of the walking (see Supplementary Table 1 for a detailed presentation of the walking program). The participants were encouraged to reduce sitting time and increase their physical activity level until they walked at least five times a week at 3–4000 steps per walk which is considered equivalent to 30 minutes of physical activity of moderate intensity [Citation14] and thus in line with current international recommendations [Citation11].

Table 1. Baseline characteristics of all participants divided into dropouts and completers.

Book club meetings

Three book club groups were conducted, each group consisting of 5–6 participants of varying ages, types of cancer diagnosis and gender. The book club meetings took place every three weeks over 24 weeks. The meetings were supervised by NMH, who acted as the facilitator. Each group meeting lasted approximately 1½ hours and adhered to the following structure:

  1. Startup (5–10 minutes): Participants greeted each other and socialized. The facilitator collected the walking log books from the participants.

  2. Introduction (5–10 minutes): The facilitator introduced the audio book and the author by presenting reviews, video clips, author portraits and/or interviews with the author of the book being discussed.

  3. Discussion of the book (60–70 minutes): Participants were encouraged to lead the discussion but the facilitator had a list of pre-prepared questions and themes developed by the above-mentioned expert. The facilitator made sure everyone had a chance to speak.

  4. Ending (5–10 minutes): The facilitator presented the selection of books and the participants chose the book they wanted to listen to prior to the next meeting.

Data collection methods

To explore the participants’ views on acceptability and feasibility of the ABC intervention, focus group interviews, and individual interviews were conducted. The questions were based around the participants’ motivation and expectations for participation in the intervention (baseline focus group interviews), and their experiences with the intervention (post-intervention focus group and individual interviews). In addition, attendance and adherence (weekly step count) were recorded prospectively and information on sociodemographics, physical activity behavior, and mental health was collected at baseline by means of standardized questionnaires.

Focus group interviews

Semi-structured focus group interviews were conducted at the first and the last meeting in each book club group (baseline and post-intervention; i.e. in total five interviews each consisting of 3–5 participants). The interviews were incorporated as part of the meetings and were conducted by JM (moderator) and NMH (observer). While the first interview focused on the participants’ motivation for participation, including their individual expectations and their attitudes and experiences with reading fiction, listening to audio books and physical activity, the second interview served as an evaluation of the participants’ experiences with the intervention.

Individual interviews

After the last book club meeting each participant (n = 8) took part in a semi-structured individual interview focused on learning about the individual's experience of participating in the intervention, including the combination of audio books and physical activity into an intervention. The interviews were conducted by two independent interviewers (LKE and SGN) who had never met the participants before the interviews. Depending on the preference of the participant, the interviews were conducted either by phone or in person at the study site. The mean length of the individual interviews was 41 minutes (range 32–61 minutes).

Self-report questionnaires and step count

The participants filled out self-administered standardized questionnaires at baseline to assess components of mental health and physical activity behavior. Assessment of mental health included anxiety and depression (by means of the Hospital Anxiety and Depression Scale [Citation15] and the Center for Epidemiological Studies Depression Scale [Citation16]), and sleep quality (by means of the Pittsburgh Sleep Quality Index [Citation17]). Assessment of physical activity behavior included measurement of baseline physical activity level (by means of the Saltin-Grimby Physical Activity Level Scale [Citation18]), and continuous measurement of weekly walking (number of steps and number of walks per week) by means of a pedometer (iPod nano 7th generation, ©Apple Inc.) recorded by the participant in a logbook. In addition, information on sociodemographics and health variables (i.e. age, education, and cancer diagnosis) was collected by means of baseline questionnaires.

Analysis

All interviews were recorded and transcribed verbatim. The analysis and interpretation followed the standards of qualitative content analysis [Citation19] with the support of ©QSR International Pty Ltd. (QRS NVivo). The transcribed responses were reviewed based on a comprehensive understanding of the overall research question. Meaning units were identified, condensed, grouped, and interpreted in relation to the study aim. Codes were identified inductively, named, and grouped into subthemes; and new associations were sought. The analysis process was repeated back and forth between the original transcription and the themes, i.e. decontextualization and recontextualization. The transcriptions were reviewed and discussed throughout the analysis process between the coauthors for comparison and validation. Data from the focus group interviews and the individual interviews were analyzed simultaneously to allow for within method triangulation and the convergence of data. Furthermore, retention rate, median attendance at the book club meetings, and adherence to the walking program was calculated.

Ethics

The study was approved by the Danish Ethics Research Committee of the Capital Region (H-2-2014-040) and the Danish Data Protection Agency (2014-41-3019). The study was carried out in full compliance with the Helsinki Declaration, and written informed consent was obtained from all participants. If participants had to resume cancer treatment after showing interest or after inclusion in the study they were not excluded but were offered continued participation to the extent they desired (n = 2).

Results

Recruitment and participants

Participants were recruited through advertising on websites such as those of the Danish Cancer Society, patient advocacy groups and Facebook. Forty people showed initial interest in the study and contacted the investigators for further information. Of those, 17 were included in the study after being provided with further written and/or verbal information (17/40 = 43%). The main reason for non-participation was a lack of time and/or energy (10/23 = 43%) ().

Figure 1. Flow of participants through the study.

Figure 1. Flow of participants through the study.

presents the baseline characteristics. Participants were distributed over several different cancer diagnoses, the majority of participants were female (71%) and their median age was 58 years (range 37–76). While nine (53%) of the participants reported reading literary fiction at least weekly at the time of inclusion, only three participants (18%) reported engaging in moderate intensity physical activity at least three hours per week.

Retention rate, attendance, and adherence

Of the 17 participants included, eight completed the entire intervention, leaving a dropout rate of 53% (n = 9). Eight of the participants dropped out during the first half of the intervention, while one participant dropped out after three months. The reasons for dropout were dislike of the intervention, specifically the literature selection (n = 3); lack of time and energy (n = 2); disease progression (n = 1); and concentration problems (n = 1). Two participants dropped out without reason ().

Median attendance at the book club meetings comprising the eight participants who completed the intervention was eight meetings of nine possible (IQR 6–9) (data not shown). The main reasons for non-attendance were holidays, illness, and work. Counting the total recommended number of weekly steps (i.e. not taking into account the number of walks), the results show that participants reached the step goal in a median of 11 (IQR 7–12) of the first 12 weeks and in seven weeks (IQR 1–10) of the last 12 weeks (details on the participants weekly steps and walks during the intervention period are presented in Supplementary Table 1).

Modifications to the intervention

In response to the substantial dropout and to feedback from dropouts and completers, modifications to the intervention were made at the midway point. Several participants indicated that the books were too bleak, so the selection was expanded with new books chosen by the facilitator prior to each book club meeting. Furthermore, we collapsed the three book clubs into two because of the dropout. As a consequence, the initial walking program was replaced with a general encouragement to all participants to increase the frequency and intensity of walking and other physical activities.

Qualitative findings

Integrated results from the qualitative portions of the study revealed five themes and 16 subthemes. provides an overview of the themes with subthemes.

Table 2. Overview of themes and subthemes.

Motivation and expectations

The participants’ reasons for enrollment included a wish or desire to rediscover the pleasure of reading literary fiction, which most felt cognitively unable to do while undergoing treatment.

What motivated me to join in was the thought of enjoying the rewarding experience of reading books again. I'm fairly used to reading complicated things, but I suddenly found that I couldn't stay focused for very long. (Woman, 62 years, lymphoma, individual interview)

Moreover, most participants expressed a lack of interest in physical activity, which they hoped to overcome by committing themselves to a structured, low-intensity program and they anticipated experiencing an intellectually stimulating activity (i.e. listening to fiction).

I find it very difficult to get out and get the physical exercise I need. I find all sorts of distractions and excuses not to go out for a walk … I lack the motivation. (Woman, 52 years, breast cancer, baseline focus group interview)

Everyone mentioned that they felt attracted to the intervention because of the anticipation of a normal activity (i.e. book club) not related to their illness experience. They stated that they, in the past, had avoided cancer-related group therapy or activities otherwise based on sharing experiences and concerns.

I would only really come along to the sessions because they involved discussing books and not talking about our illness. (Woman, 62 years, lymphoma, individual interview)

Attentive listening

The participants explained how listening to a narrated story instead of reading a story was cognitively challenging but at the same time a mentally absorbing and meaningful experience.

When you've been a cancer patient you become aware of not doing things that aren't obviously meaningful – like cleaning or going to the gym. I don't think those things are meaningful at all. Doing exercise can seem meaningless at first but in the end you realise it’s actually very meaningful. But you have to find that out first. The audio books have been extremely meaningful to me. (Woman, 52 years, breast cancer, individual interview)

All appeared to agree that listening required practice and for some it was not until the second or third book that they felt familiar and content with the audio book format.

You can't focus on several things at once, you can only walk and listen. It's not possible to walk the dog or walk with others because then you start focusing on the wrong things. (Woman, 52 years, breast cancer, individual interview)

The telephone doesn't ring. There are no interruptions. This is concentrated and intense reading. (Woman, 62 years, lymphoma, post-intervention focus group interview)

A woman used to reading explained how the narrator supported her interpretation of the story and some explained how they were able to use their surroundings (i.e. nature/walking in the woods or around a lake) as an extra dimension to the story.

You also get an interpretation of the book through the narrator, so you're guided through the book, which is quite interesting – it's an intense experience. You absorb the story in another way because you're not staring at pages. Audio books make you see things in a different way. (Woman, 72 years, lung cancer, individual interview)

Two participants who lived in the city explained that they easily lost track of the story and were often forced to rewind and listen to the same chapters or passages over and over again.

Although encouraged to listening to the audio books while walking for exercise, some reported also listening to stories in combination with doing housework (i.e. cleaning, doing the laundry), which made them feel able to justify reading books and even gave them a sense of anticipation about being active in the house.

Sometimes when I sit down with a normal book I feel like I'm wasting time. But with audio books I don't get that feeling at all. I can get other things done while I listen, like the washing. It's great and I don't feel guilty about spending time on myself. (Woman, 72 years, lung cancer, post-intervention focus group interview)

In addition, for some, listening was experienced as a defence against concerns about the future. One woman explained how she had scheduled exactly which time of day she would listen to the story to avoid anxiety, while another woman used the book to fall asleep.

I fall asleep more easily and I also feel more confident about going to bed, as I'm not so afraid any more of lying there with thoughts spinning around my head. (Woman, 52 years, breast cancer, individual interview)

Affected by the story

The participants all had strong opinions about the selection of books. Some felt that the content of the stories and poems was too bleak and described how this was related to their cancer experience, which had provoked a certain self-awareness or sensitivity towards stories related to dark sides of life, and how they had made a conscious choice to protect themselves from such stories. A woman in her 40s who dropped out after one meeting because she disapproved of the book selection explained how the books, in her opinion, did not ‘let the sun in’ and failed to allow the imagination free rein or were not captivating enough.

If I were to summarise my criticism (of the books, ed.), it would be that when you have a serious cancer diagnosis and you have to fight for survival you have to try very hard to find positive things in life – you have to cling to hope. So it can be a bit difficult to cope with books involving numerous suicides or characters who are sick of life, where everything is negative. (Woman, 44 years, breast cancer, individual dropout interview)

However, three women viewed the same books as intriguing and stimulating, describing how the books had helped them to rediscover their enjoyment of literary fiction and how they saw the books as a momentary escape from their own concerns and reality regardless of the cruelty or sadness in some of the books.

I have rediscovered the joy of literature again. The joy of entering a world created by others. It’s come back. (Woman, 62 years, lymphoma, individual interview)

A really good book is one that creates images that leave their mark. (Man, 76 years, prostate cancer, individual interview)

All of the participants agreed that a greater variety of literary genres or the ability to choose on their own would have been preferable to a pre-selected list.

Group involvement

Some participants dropped out or did not show up for the group meetings because they said they were too busy. However, when asked post-intervention whether the book club just as well could have been an online book club, the participants answered with a definite ‘no’. They described how sitting face-to-face and getting to know one another by discussing the books was both rewarding and necessary.

I feel that talking about what you’ve read together with others is very rewarding and I was completely surprised. You get a whole lot of new angles on what you’ve read. (Woman, 52 years, uterine cancer, individual interview)

Some stated that being prepared for book club meetings motivated them to read and that discussing the books opened new perspectives.

I thought meeting and talking about them (the books, ed.) was good and it also made you feel obliged to read them too. (Woman, 62 years, breast cancer, individual interview)

Most expressed feeling a sense of gratefulness about having met new people and some said that their new acquaintances enhanced their respect for other people’s opinions and struggles.

We would never have had the discussions if we hadn't sat down with one another. We’ve used the illness as part of the experience we have in our life, just as other people have other experiences. The illness matters, but it’s not the all-important thing. We don't wallow in it and we are all very different people. (Woman, 62 years, lymphoma, post-intervention focus group interview)

Walking regularly

Everyone described adopting regular walking as extremely self-rewarding and as an activity that had given them a sense of self-pride and mental energy.

I think there's a mental side to getting out; I could really feel myself relaxing my shoulders and breathing and I thought, ‘You're doing something good for yourself’. (Woman, 52 years, uterine cancer, individual interview)

The pedometer was described as a strong motivator for all participants, irrespective of the books.

Getting out, moving and stretching your legs and getting fresh air and a change of scene also does a lot of good. (Man, 76 years, prostate cancer, individual interview)

Some said that striving to meet the goals of the walking program (i.e. 3–4000 steps a minimum of five times per week) helped structure their daily lives in a way that contributed to reducing their sense of confusion and – for some – also their guilty conscience about not exercising enough. For those participants who listened to the books while walking in the countryside, regular walking was described as a unique experience connecting the mind with the body.

It does something positive for your brain and for your legs too. (Woman, 62 years, lymphoma, post-intervention focus group interview)

One woman described how she sometimes would keep walking to get further into the story/book.

I've got into the habit of going for walks and I look forward to them. Getting outside has helped me – You shake off some of your worries when you walk outside. (Woman, 72 years, lung cancer, post-intervention focus group interview)

Discussion

To the best of our knowledge, this is the first study in the medical literature to introduce and evaluate the potential of audio books for promoting mental health and physical activity. The findings indicate that while the ABC intervention constituted an escape from one’s own concerns and provided new perspectives on life for some, it had the opposite impact on other participants. Both types of experience confirm theory suggesting that when people read a fictional narrative, they may become fully immersed into the story, which presents an alternative narrative world distant from the real world [Citation20]. This equally supports the need, in future interventions, to involve participants in the choice of literature, including discussion of the decision to focus on one genre. Based on the results of this study, carefully and collectively deciding on the tone and theme of the club, and which time is best for everyone to meet, is imperative to create a sense of shared ownership, boost attendance and avoid dropout. In this regard, it was especially interesting to observe how one participant experienced listening to narrated fictional stories at night as a means to manage feelings of anxiety and sleep latency. However, whether reading in combination with walking could in fact enable better sleep quality in cancer survivors, merits further research.

While the initial motivation for including a walking program in the intervention was to avoid promotion of sedentary behavior, the findings indicate that combining the use of audio books with physical activity, may contribute to increased physical activity and the perception of physical activity as a meaningful and appreciated pastime. Moreover, according to participants who completed the intervention, moving around while listening to a book made doing an otherwise sedentary activity (i.e. reading) legitimate. The potential motivating impact of the audio books on physical activity behavior cannot be isolated from the potentially independent effect of pedometers, which are known to promote physical activity in cancer survivors [Citation21]. Huberty et al. [Citation22] evaluated the use of books as a platform for discussion and group support to help women adopt regular physical activity and found that their intervention contributed to increased self-worth and physical activity. Unlike the current study, however, the books were not delivered in an audio format and they comprised both fiction and non-fiction, mainly related to physical activity. Further research is needed to evaluate the potential of audio book listening in the adoption of regular physical activity in cancer survivors.

A notable finding in this study relates to the participants’ descriptions of their motivation for enrollment (i.e. the non-cancer agenda), which confirms that ABC may be unique in representing a low-intensity psychosocial intervention not affected by the potential stigma and expert dependency that may be linked to conventional mental health treatment. Similar experiences have been reported by Holland and colleagues [Citation23] at the Memorial Sloan-Kettering Cancer Center. In 2012, Holland initiated a Vintage Readers Book Club to prevent isolation in older cancer survivors. This book club was successful, partly due to the participants’ lack of comfort in talking about themselves in a therapeutic situation. According to Dr. Holland conversations about books allowed a discussion of the individual’s concerns about dying and ageing but in a non-stigmatized context. More studies are needed to conclude whether book clubs can prevent social isolation and psychological distress in various cancer populations.

Methodological considerations

Even as a study designed to test the feasibility and acceptability of the ABC intervention, this study is limited by the included participants all being well educated indicating that the intervention might be especially feasible in and attractive to high-functioning individuals. Clearly, more research is needed to evaluate the feasibility and acceptability of the audio book format and reading club participation in populations with lower socioeconomic status not previously familiar with fiction reading. One of the strengths of this feasibility and acceptability study is the use of data and researcher triangulation. Although saturation may not have been reached in all areas, the combination of data from focus group interviews and individual interviews increased the internal validity. Only one individual interview was conducted with a participant who dropped out of the study, preventing a more thorough and structured exploration of the reasons why people dropped out. Additional interviews could have helped achieve data saturation and offered further valuable input concerning the evaluation and further development or modification of the ABC intervention.

Moreover, there are some limitations to the use of untested pedometers and the data they produce. The iPod nano 7th generation (©Apple Inc.) offered convenient ready-to-use and user friendly access to audio books and a pedometer but the validity and reliability of the built-in pedometer warrant being tested prior to use in a future trial. It is also a limitation that the participants only wore the pedometers during targeted walks. Besides allowing for comparison across studies, wearing the pedometer during all waking hours would have offered a more accurate picture of actual physical activity level and changes herein.

Conclusions

While preliminary, the results of study suggest that listening to literary fiction may be perceived as a meaningful activity that potentially can promote mental health and physical activity in cancer survivors. Certain stories, however, may affect some individuals negatively, which is why allowing participants to choose the type of literature (story content) they wish to read is critical to enhancing acceptability. To conclude, ABC represents a novel psychosocial intervention potentially supporting physical activity adoption and mental health in cancer survivors. As this study shows, however, several issues regarding feasibility and acceptability, including choice of fictional literature, format and supervision of book club meetings need to be considered before larger scale clinical trials are initiated.

Supplemental material

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Acknowledgments

We wish to thank all the participants in this study for their participation and valuable input. We would also like to acknowledge Nanna Mogensen for her expert advice on literature.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This study was funded by the Danish Cancer Society [grant number R82-A5353-13-S15].

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