Acceptability of Bibliotherapy for Patients With Cancer: A Qualitative, Descriptive Study

Various interventions to treat distress and improve quality of life for patients with cancer have been extensively researched and are highly effective (Carlson, Waller, Groff, Giese-Davis, & Bultz, 2011). The interventions offered typically involve psychoeducation, cognitive behavioral training (group or individual), group supportive therapy, and individual therapy (Carlson et al., 2011). However, a significant proportion of patients with cancer who report psychological distress do not take advantage of available psychosocial care (Krebber et al., 2012). Barriers to receiving adequate psychosocial care include a lack of adequate screening for anxiety and depression in oncology settings, reluctance by patients to be referred, absence of trained mental health professionals to complete assessments and deliver interventions, stigma associated with receiving mental health services, inconvenient locations, and traditional models of psychosocial care delivery that do not meet current patient demands (Carlson, Waller, & Mitchell, 2012; Hutchison, Steginga, & Dunn, 2006; Krebber et al., 2012; Leykin et al., 2011).

To address some of the obstacles faced by those attempting to access psychosocial care, self-help approaches with little or no therapist input are being researched. Self-help interventions that use treatment books are referred to as bibliotherapy (Bilich, Deane, Phipps, Barisic, & Gould, 2008). Advances in technology have made books readily available on the Internet; as such, the term bibliotherapy is increasingly being used to include Internet-based reading materials, as well as books. A substantial amount of research exists on the effectiveness of bibliotherapy for various mental health conditions, such as mild to moderate depression and anxiety. Meta-analyses and a systematic review have confirmed the usefulness of bibliotherapy in this context (Cuijpers, 1997; Fanner & Urquhart, 2008; Gregory, Schwer Canning, Lee, & Wise, 2004; Marrs, 1995). However, such research is scarce in the psycho-oncology domain.

Semple, Dunwoody, Sullivan, and Kernohan (2006) surveyed patients with head and neck cancer (N = 14) about their preferred mode of cognitive behavioral intervention. One-to-one therapy (43%, n = 6) and bibliotherapy (36%, n = 5) were the preferred options, whereas computer-administered (14%, n = 2) and group-format interventions (7%, n = 1) were the least popular (Semple et al., 2006). Similar findings were reported when preferences were evaluated during a psychoeducational coping intervention for people with head and neck cancer (Allison et al., 2004). The latter study used a prospective, nonrandomized design, and patients (N = 59) were offered an intervention program in one of three formats. Thirty-three patients requested individual therapy, 23 preferred the material to use at home without a therapist, and 3 chose a group format. These preliminary findings suggest that a subgroup of patients with cancer is interested in accessing bibliotherapy; consequently, further examining the evaluation and implementation of bibliotherapy for this population is important.

The goal of the current study was to determine the acceptability of a self-help workbook for patients with cancer. Acceptability refers to “determining how well an intervention will be received by the target population and the extent to which the intervention might meet the needs of the target population” (Ayala & Elder, 2011, p. S69). Specifically, this study sought feedback on whether Mastering the Art of Coping in Good Times and Bad (Edgar, 2010) is an acceptable self-help workbook to support patients in their coping with cancer.

Research Approach

This qualitative, descriptive study is part of a longitudinal, mixed-methods, randomized, controlled trial. Approval was obtained from the research ethics boards of the two tertiary care teaching hospitals in Montreal, Quebec, Canada, from which participants were recruited. Consenting, eligible participants completed a sociodemographic questionnaire and baseline measures, and they were then randomized to the control arm (i.e., usual care) or one of the treatment groups (i.e., receive the workbook alone or receive the workbook plus a telephone interview). The current study focuses on participants who were randomized to the treatment group that received the NUCARE (NUrsing, CAncer, and REsearch) workbook and who participated in a recorded 30-minute telephone interview six weeks after enrollment. To assess acceptability, a semistructured interview guide with open-ended questions was used. This particular interview type was chosen because it grants the interviewer flexibility to follow up with relevant questions and probes to gather richer descriptions. Participants were asked their opinions about the workbook, and questions included the following:

•  What was most helpful about the workbook?

•  What would you recommend we do to improve the workbook?

•  Would you recommend the workbook to other patients with cancer?

Participants

Patients were eligible to participate if they were aged older than 18 years, had been diagnosed with cancer, and were able to read English. Patients were excluded if they indicated at the time of recruitment that they were participating, or intended to participate, in a workshop offered at one of the participating hospitals that covered the material in the workbook. Eighteen participants were interviewed about their experience with the workbook intervention.

Setting

Participants were recruited via flyers and handouts posted at the psychosocial support cancer centers of two tertiary care teaching hospitals in Montreal. In addition, emails were sent to patients registered at these centers informing them of the opportunity to be involved in this study. These centers offer free access to programs for patients with cancer and their families, such as one-to-one peer counseling, self-help groups, physical activities (e.g., fitness, yoga, tai chi, walking), and creative classes.

Workbook Intervention

Mastering the Art of Coping in Good Times and Bad (Edgar, 2010) is the published workbook based on the didactic material of the NUCARE intervention program. NUCARE is a psychoeducational self-help intervention program based on the principles of cognitive behavioral therapy (Edgar, Rosberger, & Collet, 2001; Rosberger, Edgar, Collet, & Fournier, 2002). The intervention focuses on two major areas: (a) the enhancement of a sense of personal control and (b) the learning of emotional and instrumental coping responses (Edgar et al., 2001). The approach emphasizes training in seven skills: mindfulness, cognitive coping, relaxation techniques, goal setting, problem solving, communication, and social support. Participants had the workbook for six weeks before being interviewed and were advised to read about two chapters a week. The workbook consists of 174 pages and 12 chapters on the body and stress, the importance of practice in learning a new behavior, what good coping involves, the seven skills of NUCARE, a healthy lifestyle, and closing thoughts.

Methodologic Approach

The research approach chosen was qualitative description, which allows for a straight descriptive summary of the data in everyday language (Sandelowski, 2000) and is recommended for intervention development or refinement (Neergaard, Olesen, Andersen, & Sondergaard, 2009). The interviews were digitally recorded and transcribed verbatim by a trained research assistant. The primary researcher read the transcripts thoroughly to become familiar with the data (Pope, Ziebland, & Mays, 2000). Data were coded by the primary researcher using content analysis, the most common form of analysis used in qualitative description (Milne & Oberle, 2005; Sandelowski, 2000). Content analysis involves coding data into units and grouping these into main categories based on shared characteristics (Milne & Oberle, 2005). Data coding was performed using ATLAS.ti® software.

Specific techniques were employed to ensure rigor of the current study (Milne & Oberle, 2005; Whittemore, Chase, & Mandle, 2001). To enhance authenticity, a semistructured interview guide was used to encourage participants to share their opinions, and probes were employed to encourage a rich description of each participant’s narrative. To address credibility, codes were used that emerged from the data rather than being set a priori. Finally, to improve integrity, direct quotations are provided to support interpretations of the data. As such, readers are able to verify the credibility and integrity of the study as a whole.

Findings

Twenty-one patients were invited to partake in the interview. However, one interview failed to record, one participant withdrew from the study, and one participant was unable to commit to the interview time. Consequently, 18 participants completed the interviews from which the data emerged (see Table 1). Fifteen respondents were female and three were male. Participants’ were aged 18–89 years (mean = 53.4, SD = 15.4).

Two main categories were identified from the respondents’ interviews regarding the acceptability of the workbook. The first category focuses on content, whereas the other focuses on recommendations for improvement. Interviewees specified the following content as most helpful: (a) focusing on the positive, (b) mindfulness, (c) relationships, and (d) skill reinforcement. In addition, the majority of participants reported that they would recommend the workbook to others and made recommendations regarding improvements centered on making additional support available while reading the workbook.

Content

Focusing on the positive: Many respondents reported that the workbook was most helpful in teaching them how to change their thoughts, gain perspective, and think more positively. Respondent 4 said, “Some of the things that I read . . . that would have been good to know at the beginning . . . simply the way it helps you think in the positive. . . . It reminds you to be happy, to laugh.” Respondent 6 shared similar thoughts.

You don’t feel hopeless, or you don’t feel like things are way out of control. . . . You learn to cope. . . . That’s given me a new outlook on things. . . . I identify different thoughts and how I feel and sort them out and simplify them. . . . I can deal with them.

Respondent 9 described the workbook as being able to “refocus . . . attention in a more positive, productive way,” whereas respondent 13 further detailed its impact on positivity.

I’m able to change my thoughts. I do see how it affects me in a very positive way. . . . It’s like I’m able to think better . . . because I’m changing my thought processes, I’m not wallowing in the dark; I’m actually doing something to be creative, to change whatever it is that I’m going through at that moment.

Mindfulness: Interviewees responded positively to the recommendation to be more mindful to cope better with stress. Respondent 6 said to “be mindful of the little things” and “not to take everything for granted and . . . enjoy doing things that you do every day and kind of focus on it, and be aware of what you do.” Respondent 8 echoed these thoughts: “It takes a moment of your day to . . . pay attention to what’s happening around you. . . . It helped me . . . to be honest, [and it was] more relaxing than the breathing exercises.” Likewise, respondent 10 referred to mindfulness as “very, very helpful,” saying, “I think it’s just easy to use at times of stress, you know, just to focus on something else and get your mind off of whatever it is stressing you.” Respondent 16 said simply, “Before, everything was rushed. Now, I slow down.”

Relationships: Two subcategories emerged from the analysis regarding the importance of relationships: (a) that the workbook encouraged respondents to seek new relationships and enhance current relationships and (b) that the workbook addressed the importance of setting boundaries in relationships. In terms of the former subcategory, respondent 11 said, “But I realized the moment that I read that in the workbook, the moment I decided I was going to forgive that person, I felt better myself. So, it was such a relief.” Respondent 13, also referring to the first subcategory, shared a newfound appreciation for various relationships.

I realized much more that I took intimate friendships and family for granted . . . whereas now, I realize how important those relationships are and how much of a difference they really make. . . . I’ve learned to really appreciate that. . . . A huge part of coping successfully is having love and close relationships with other people . . . made me more aware.

Referring to the second subcategory, respondent 8 noted the following:

I’m not the type of person, usually, to say, “I want to do this” or, “I don’t want to do this” [in relationships] . . . but . . . after reading the book, I kind of felt like, “Oh . . . maybe I should start doing that” . . . so I did.

Respondent 16 detailed the difficulty inherent in setting boundaries: “I would like to help everybody. I cannot do that anymore. . . . In the book, they say you have to say ‘no’ sometimes. . . . I never said ‘no.’ It’s very, very hard to say ‘no.’”

Skill reinforcement: Respondents noted that, although some of the coping skills were not novel, reading the workbook still had a positive impact on them because it reinforced the coping skills they already had, as respondent 1 described: “I really am lucky because I know this stuff, and so I really am not a depressed person at all. So, I was thinking in that way, good, thank goodness . . . I am [not depressed].” Respondent 3 detailed the benefits of reading the workbook.

I’ve always considered myself to have good coping skills, and I was really impressed, although most of the stuff I already knew. But just the way it’s laid out and some of the exercises and practice suggestions; they really, really enforced it a whole lot better.

These thoughts were shared by respondent 4, who explained that the workbook “confirmed some of the things that I already . . . think and do and act like, but . . . we always need to be reassured,” as well as by respondent 13.

I didn’t realize . . . I already had a lot of the tools in me in terms of coping mechanism. I did always look for a silver lining, so I just knew “Oh, OK, I could do that again” . . . “OK, yeah, I’ve done that before, I could do that again.” I was also working on my strengths, so it was nice.

Respondent 14 noted, too, that the workbook “confirms all the good things I already read, and it made me feel good reading it. It confirmed that I should keep going in that direction. . . . I need to maintain.”

Recommendations

Recommendations to others: Two subcategories were discovered: (a) recommendations to others and (b) recommendations to improve the intervention. Regarding the former subcategory, all participants, except for one who had not read the entire workbook yet, indicated they would recommend the workbook to other patients with cancer. Respondent 3 noted, “It was a great book. . . . I wish I hadn’t written all over this because I’d love to pass it on.” Similarly, respondent 6 said, of sharing the workbook with other patients with cancer, “I would tell them that it helped me, changed some of my thought processes, and it helped me for the better and I would recommend they read it.” Respondent 12 said reading the workbook could only be beneficial.

Even if they feel well, it’s a very good idea to read it, try to manage their stuff with the book because, even if it helps only 10%, it helps and it’s positive. So, maybe what they read now will not apply right away. If they do it in six months or in a year, it cannot be negative. So, it’s only a good thing.

Respondent 13 said, “We all need skills on coping,” adding that the workbook “is a really great gift for oneself,” whereas respondent 15 suggested to other patients with cancer “to read the book . . . try to do what they say in the book . . . and, after, go see somebody who would be able to help them professionally.” In addition, respondent 17 called the workbook “a big help for some, for myself and other people, to use it as guide to help cope with life, with family with the idea of being ill” and an aid for “looking to the future and not worrying all the time,” as well as “coping with worry.”

Three participants recommended that the workbook be offered to everyone, not only patients with cancer. Respondent 5 said the workbook is “terrific”: “You have to read it even if you don’t have cancer.” Likewise, respondent 10 said, “I would highly recommend it. . . . I think it’s really a general coping thing for people. . . . In everyday life, I think it would really help people out,” whereas respondent 12 noted, “It’s very good, not just for sick people but for a lot of people.”

Recommendations to improve the intervention: Respondents had various suggestions on how to improve the self-help workbook. For instance, two respondents recommended that the content be available as an audiobook. However, most suggestions were related to having access to additional support, such as a coach or therapist, while reading the workbook. Respondent 3 said, “It would be helpful to discuss some things that maybe you weren’t sure about exactly . . . just to have a little bit of feedback,” and respondent 9 suggested “a directory . . . with different organizations,” saying, “If you’re having trouble, maybe call this organization, or try these different tasks.” In addition, respondent 13 said speaking to a therapist “helps me very much,” whereas respondent 14 added that inviting “you to contact a psychologist to help you . . . was a good idea.”

Discussion

The goal of the current study was to obtain feedback regarding the acceptability of the NUCARE self-help workbook for patients with cancer. The majority of the sample were Caucasian women diagnosed with breast cancer. Individuals of all ages (range = 18–72 years) and patients currently in treatment with more advanced cancers expressed interest in the self-help workbook.

Seventeen of 18 respondents reported that they would recommend Mastering the Art of Coping in Good Times and Bad to other patients with cancer. Respondents noted that, although some of the coping skills were not novel, reading the workbook still had a positive impact because it reinforced the coping skills they already had. In addition, respondents reported that the workbook was helpful because it addressed ways to think more positively, the skill of mindfulness, and the importance of relationships. These skills have been associated with positive psychological well-being in patients with cancer (Dukes Holland & Holahan, 2003; Piet, Würtzen, & Zachariae, 2012; Shennan, Payne, & Fenlon, 2011).

Although previous research has not explored patients’ reactions to and perceptions of the self-help NUCARE intervention at a qualitative level, drawing parallels with the quantitative studies previously conducted is possible. The NUCARE intervention, when offered in individual and group formats, has been shown to be effective in teaching adaptive coping strategies, alleviating distress, and enhancing psychological adjustment (Allison et el., 2004; Edgar et al., 2001; Edgar, Rosberger, & Nowlis, 1992; Rosberger et al., 2002; Vilela et al., 2006). These findings corroborate the aforementioned results, which highlight the acceptability and usefulness of the content of this workbook for this population.

Limitations

Although the current study goes beyond previous work, it is not without its limitations. The convenience sampling approach employed in this study can be considered biased because only patients interested in participating in a self-help intervention were recruited. Given that participants were recruited from two cancer care centers in the same large city, findings may not be transferrable to or be representative of all patients with cancer. Also, the majority of participants had some college-level education or higher. Individuals with lower levels of education may be less interested in engaging in a bibliotherapy intervention.

Implications for Practice

Psychosocial oncology services continue to be understaffed and underfunded to adequately respond to patient needs for professional psychosocial support. Overburdened primary care staff often tend to neglect psychosocial issues (Carlson & Bultz, 2003, 2004) and are not trained to provide specialized psychosocial services. Consequently, many patients do not have access to adequate psychosocial support (Carlson & Bultz, 2003, 2004). Bibliotherapy is not only cost effective and easy to administer, but also may be an acceptable form of treatment for some patients. Offering evidence-based bibliotherapy has the potential to reduce the current strain on resources and enhance psychosocial services offered.

Conclusion

The current findings are promising and provide information to guide future research. For instance, future research may include the following: a replication of the results with a larger and more diverse sample to establish the optimal recipient group, examination of whether a book offered with some additional support by a professional or a trained oncology volunteer would be significantly more helpful than a book alone, examination of the acceptability of an audiobook, examination of the efficacy of bibliotherapy for patients, research into the implementation of bibliotherapy in current psychosocial departments, and eventual development and evaluation of a stepped care model of service for patients with cancer.

The workbook Mastering the Art of Coping in Good Times and Bad may be an acceptable means of helping patients with cancer manage their stress. Because patients are expressing an interest in obtaining a book to help them cope, further investigations of bibliotherapy are warranted for this population.

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About the Author(s)

Roberts is a PhD graduate of the Department of Educational and Counselling Psychology at McGill University; Lee is a nurse scientist in the Psychosocial Oncology Program at the McGill University Health Centre; and Ananng is a research assistant and Körner is an associate professor, both in the Department of Educational and Counselling Psychology at McGill University, all in Montreal, Quebec, Canada. This research was funded by a grant from the Canadian Institutes of Health Research and a Psychosocial Oncology Research Training Doctoral Fellowship. Roberts can be reached at nicole.roberts@mail.mcgill.ca, with copy to editor at ONFEditor@ons.org. Submitted June 2015. Accepted for publication October 28, 2015.