Prior to beginning work on this discussion forum, read the instructor guidance, the qualitative section of Chapter 7 and all of Chapter 9 in the Creswell and Creswell text, the articl

Westas et al. BMC Psychiatry (2022) 22:294 https://doi.org/10.1186/s12888-022-03939-7

RESEARCH

The experience of participating in an internet-based cognitive behavioral therapy program among patients with cardiovascular disease and depression: a qualitative interview study Mats Westas1*, Ghassan Mourad1, Gerhard Andersson2,3, Margit Neher4, Johan Lundgren1 and Peter Johansson1

Abstract

Background: Depression in conjunction with cardiovascular disease (CVD) is associated with worsening in CVD, higher mortality, and poorer quality of life. Despite the poor outcomes there is a treatment gap of depression in CVD patients. Recently we found that an Internet-based cognitive behavioral therapy (iCBT) tailored for CVD patients led to reduced symptoms of depression. However, we still have little knowledge about CVD patients’ experiences of work- ing with iCBT. The aim of this study was therefore to explore CVD patients’ experiences of engaging in a tailored iCBT program.

Methods: A qualitative interview study using inductive thematic analysis. Data was obtained from 20 patients with CVD and depressive symptoms who had participated in a randomized controlled trial (RCT) evaluating the impact of a nine-week iCBT program on depression.

Results: Three main themes emerged: (1) Taking control of the disease, (2) Not just a walk in the park, and (3) Feel- ing a personal engagement with the iCBT program. The first theme included comments that the tailored program gave the patients a feeling of being active in the treatment process and helped them achieve changes in thoughts and behaviors necessary to take control of their CVD. The second theme showed that patients also experienced the program as demanding and emotionally challenging. However, it was viewed as helpful to challenge negative think- ing about living with CVD and to change depressive thoughts. In the third theme patients reported that the structure inherent in the program, in the form of organizing their own health and the scheduled feedback from the therapist created a feeling of being seen as an individual. The feeling of being acknowledged as a person also made it easier to continuously work with the changes necessary to improve their health.

Conclusions: Engaging in an iCBT program tailored for patients with CVD and depression was by the patients perceived as helpful in the treatment of depression. They experienced positive changes in emotions, thoughts, and behaviors which a result of learning to take control of their CVD, being confirmed and getting support. The patients

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Open Access

*Correspondence: [email protected] 1 Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden Full list of author information is available at the end of the article

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Background Studies suggest that among patients with cardiovascu- lar disease 20–40% have depressive symptoms, which is significantly higher than the rate of depression in the general population [1, 2]. Depression in patients with CVD is associated with several negative effects, such as lower health-related quality of life [1], increased risk of morbidity and all-cause mortality [3, 4]. Thus, depression is a common and serious problem in patients with car- diovascular disease. This has also been highlighted by the European Society of Cardiology Guidelines [5] and the American Heart Association [6], .both of whom suggest that it is important to detect and treat depression in CVD patients.

There are, however, several challenges in the treat- ment of depression in cardiovascular disease. One chal- lenge is that the effects of pharmacological treatment are generally small [1] and can also increase the risk of interactions with other medications and side effects [7]. One alternative to pharmacological treatment is psy- chological interventions such as cognitive behavioral therapy (CBT). Although a recognized method in the treatment of depression in cardiovascular patients [8, 9], CBT brings another challenge. Traditional face-to-face CBT suffers from limited access to psychotherapists and the high cost of the treatment [10]. A possible solution could be internet-based CBT (iCBT) which, compared to face-to-face CBT, has been found to be equally effective and also a cost-efficient treatment option for depression in other populations [11, 12]. iCBT can be delivered in an unguided or guided format with feedback on weekly homework assignments. Most research suggests that the guided format is more effective and less associated with dropout [13]. Moreover, iCBT can be delivered to patients in their home by healthcare providers with only brief introductory training in CBT, allowing more patients to have access to the treatment [14].

.Furthermore, studies report that patients with chronic somatic diseases who work in generic iCBT programs have difficulties to identify themselves when defining problems and in goal settings [15, 16]. In another iCBT study, CVD patients expressed that an improvement of the program was to include the possibility to ask medi- cal questions [17]. Thus, to maximize the potential health benefits of iCBT in patients with chronic somatic dis- eases, suggestions have therefore been made that these

programs should be adapted to the specific chronic somatic condition [15, 16, 18], such as CVD in our study.

Our research team recently published a randomized controlled (RCT) trial in which an iCBT program was tested in patients with CVD and depression. The pro- gram was tailored for this patient group and guided by nurses with brief introductory training in CBT and in col- laboration with a clinical psychologist. One of the nurses was a specialist psychological nurse (JL) [19]. The results showed that the iCBT program had significant and mod- erate effects on depression. This demonstrates that it is possible to treat depression in patients with CVD using tailored and guided iCBT. However, the study did not provide any in-depth information regarding depressed cardiovascular patients’ experiences of taking part in the tailored and guided iCBT program.

A central aspect of CBT is changing the patterns of emotions, thoughts, and behaviors in order to decrease the symptoms of depression [20]. It is therefore impor- tant to understand how the iCBT program influenced emotions, thoughts, and behaviors in patients with car- diovascular disease. To our knowledge there are only two studies exploring patients with CVD and their experiences of participating in guided iCBT [17, 21]. In a qualitative study [21], heart failure patients reported that information about heart failure and depression was a helpful way to learn about self-care and strategies and to cope with their own health. In another study, based on both qualitative and quantitative data, patients with a recent myocardial infarction reported both positive and negative experiences of participating in an RCT. For example, some patients valued the content of the pro- gram and the therapist contact while others did not [17]. However, these two studies focused more on the experi- ence of participation and the structure of the iCBT pro- gram and did not specifically explore the how engaging in an iCBT program influenced to changes in emotions, thoughts, and behaviors.

Method Design We used a qualitative semi-structured interview study design when interviewing patients who had participated in an iCBT intervention. One-to-one interviews with open-ended questions were conducted and subsequently analyzed using inductive thematic analysis [22].

considered working with the iCBT program as demanding and emotionally challenging, but necessary to achieve changes in emotions, thoughts, and behaviors.

Keywords: Internet-based CBT, Cardiovascular disease, Depression, Qualitative research, Thematic analysis, Patient experiences

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The intervention The nine-week iCBT program tailored for CVD patients (heart failure, atrial fibrillation, and coronary artery disease) consisted of 7 modules with weekly work and assignments according to the treatment steps in CBT including goal setting, disease-oriented psychoeduca- tion, problem solving and behavioral activation. The pre- sent iCBT program was developed from a previous iCBT program targeting depression in patients with heart fail- ure [23, 24]. Each of the 7 modules consists of text, fig- ures, videos and homework assignments adopted to fit the context of CVD. At the end of each week, patients received feedback on the completed homework assign- ment by a nurse therapist, who had received a short course in CBT. The nurse therapists had also experience in cardiac care and were able to answer CVD-related questions. Using nurse therapist with experience in car- diac care has been shown to be effective in a recent study [25]. The feedback was personalized and focused on con- firmation, encouragement and reflection and were only provided through written messages using a secure mes- sage function within the study platform [26]. No face-to- face contact was made with the patients during the trial and the patients were connected to the same therapist throughout the treatment. If the weekly assignment was not completed, patients received a total of three remind- ers during a consecutive period of 2 weeks. A total of 60% completed all 7 modules and 82% completed more than half of the modules. The mean time for feedback by the nurse therapist was 13 min/patients and week. The nurse therapist had the opportunity to consult a psychologist throughout the treatment period. A brief overview of the treatment and the 7 modules in the iCBT program is illustrated in Additional file 1. Full details of the program are published elsewhere [19].

Subjects The patients in the present study were recruited from a RCT evaluating the effect of iCBT on CVD patients with depression, and who were randomized to the iCBT arm (n = 72) [19]. In that study the inclusion criteria were being 18 years or older, receiving CVD treatment accord- ing to the current guidelines, having stable CVD with no hospitalization related to CVD in the past 4 weeks, and having at least mild depressive symptoms. Patients also needed to have regular access to a computer with an internet connection and a mobile phone. To the present interview study, we aimed to include patients with maxi- mal variation regarding age, gender, education, the num- ber of iCBT treatment modules performed (Additional file  1) and the type of CVD diagnosis (Table  1). Thirty- five of the seventy-two patients in the iCBT treatment

group were invited by email to participate in the study and 20 (57%) of them agreed and were interviewed. Those who did not respond to the invitation, did not give any reasons for not participating, but did not differ in char- acteristics from the interview group regarding age, gen- der, education, number of treatment modules performed, type of CVD diagnosis, or depression severity at baseline.

Data collection Interviews were conducted between 1 and 6 months after iCBT completion. Patients were interviewed by telephone between November 2017 and April 2018 and the interviews had a mean duration of 28 min (range 15–49 min). All interviews were conducted by the first author (MW), a PhD student and registered nurse spe- cializing in primary healthcare and experienced in con- ducting health assessments by telephone. At the time of the interviews MW was working part-time in a gen- eral practice health clinic. To ensure that the topics of interest would be addressed, an open-ended interview guide was created [27]. The interview guide contained questions to capture the experience of engaging in the iCBT program and was pilot tested and revised with the members of the research team before the first patient was interviewed. As an example, patients were asked

Table 1 Characteristics of the participants (n = 20)

Characteristics Frequency (n = 20) %

Gender

Male 11 55

Age

Mean year (range) 62 (34-79)

Marital Status

Living with partner 17 85

Living alone 3 15

Education

Elementary 2 10

Upper secondary/high school 7 35

University 11 55

Occupation

Working 12 60

Retired 8 40

Clinical

Heart failure 1 5

Atrial fibrillation 11 55

Coronary artery disease/ Myocardial infarction /angina

8 40

Number of performed modules

1-3 0 0

4-5 2 10

6-7 18 90

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to describe their experiences of participating in the iCBT program. The interview guide used open-ended questions to allow the patients to freely describe their experiences (Table 2). No field notes were taken during the interviews. All the data from the interviews were collected by the interviewer (MW), who had previous experience of collecting and handling interview data. All interviews were conducted in the participants´ native language. All the meaning units (quotes) in the coding schedule were translated into English for presentation.

Telephone interviews were used as they fitted the design of the present study, enabling a broad sampling among patients spread over the southeast part of Swe- den. Telephone interviews have also shown to reduce emotional distress since the patients are not influenced by the presence of the interviewer [28]. All interviews were performed with ethical considerations regard- ing qualitative interviewing [29]. The participants were informed about the interviewer’s role in the study in the invitation letter for the qualitative study. All patients did provide a written informed consent prior to taking part in the interview study. The interviewer (MW) had no previous relationship to any of the participants as a therapist or in the recruitment process for the RCT study.

Data analysis The interviews were uploaded and transcribed verba- tim. The first author (MW) checked the transcribed interviews for accuracy prior to the analysis. Thematic

analysis with an inductive and latent approach was used to explore the experience of how engagement in an iCBT program could influence possible changes in emotions, thoughts, and behaviors. The inductive approach allows to generate themes from patterns in the data and not to prove or disapprove hypotheses or to test a previous find- ing, thus we did not use themes from headlines in the iCBT program. The latent approach involves interpre- tative work and admits exploration of underlying ideas and assumptions, and conceptualizations in order to find themes with a broader meaning in the data [22].

.The analyses followed the six phases of thematic analysis described by Braun and Clark [22]. In the first phase, all transcribed data were read through to obtain an overall sense of the content and to note initial ideas. In the second phase, coding was performed to reduce the amount of data and to perform a more conceptual read- ing of the transcriptions in relation to the research ques- tion. In phase three, a search to define early themes was performed. In phase four, the themes were sorted into broader and meaningful themes by looking for recurring patterns. In phase five, the themes were then sorted into larger themes, and finally defined and named. The rela- tionships between main themes and sub-themes were established to reflect upon the research question before finally in phase six, producing an initial report.

To ensure the credibility, triangulation through mul- tiple channels was conducted by having more than one researcher independently analyzing the same data set and thereby considering selective perceptions and interpretive

Table 2 Samples of interview guide

CBT Cognitive Behavioral Therapy

All interviews were conducted in the participant’s native language. The interview guide is translated into English for presentation purposes

Interview guide

Introduction: You have been in contact with the health service and been treated for your heart disease. In conjunction with this, you have also been treated for depression using our online CBT program. Q1- Talk a little about your heart disease

You have been given the opportunity to participate in an online CBT program, the aim of which was to manage and reduce depression in conjunction with heart disease. Q2- What are your experiences from your participation in this program?

a What have the different treatment modules meant to you? b What have the homework tasks meant to you? c What has the therapist’s feedback meant to you? d What are or have been important in getting you to work on changes to your health?

Q3- What are or have been the advantages and disadvantages of the program being delivered online rather than through meetings in person?

a Have you felt there are any problems with the program or the treatment?

Q4- Why did you become interested in participating in this research project?

a What were your thoughts and what was important to you when you decided you wanted to participate in the project?

In the future, this or similar online programs may be introduced into the health service as part of treatment. Q5- On the basis of your experiences of online CBT, what do you believe is important?

Total number of main questions represents the overall format.

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bias [30]. The triangulation was performed in three steps. In the first step the first author and four of the co-authors (MW, GM, MN, JL, PJ) independently performed the first steps of the thematic analysis, analyzing five randomly chosen transcribed interviews. In this step, early themes were tentatively defined. The early themes were then com- pared among the authors for selective perceptions and the authors then agreed upon the initial themes. In the second step, another five transcripts were analyzed and coded by the first author and three co-authors (MW, GM, JL, PJ). The remaining 10 transcripts were analyzed by the main author (MW). The authors then compared the coding in an iterative process and the themes were reviewed. In the third and last step, all co-authors discussed, revised, defined, and named the final themes (see coding schedule Table 3). The themes and alternative explanations of the results, if they occurred, were tested during the initial and final analysis phases. During the analysis of the final interviews no new themes emerged, supporting the belief that the maximal variation in the purposive sample had been reached. With permission from the patients the telephone interviews were tape-recorded and transcribed verbatim for data analysis, which increased trustworthiness. Apart from triangulation, trustworthiness was established by transparency of the quotations and the audit trail of the analysis process.

Results Data from 20 patients, 11 men and 9 women, ranging in age from 34 to 79 years with an average age of 62 and most of the patients had a university degree n = 11 (55%). The patients had completed five to seven modules out of seven possible modules included in the 9-week iCBT program. The patients lived in both rural and urban areas, and most of the patients (n = 17) were in a relation- ship (Table 1).

Three main identified themes were (a) Taking control of the disease, (b) Not just a walk in the park, and (c) Feeling a personal engagement with the therapy program. Each of these three main themes has three corresponding sub- themes. Themes and sub-themes are presented in, Fig. 1.

Taking control of the disease This first main theme describes how the patients experi- ence taking control of their health by working in the pro- gram. The patients described how the program gave them guidance through the different modules, which made them feel they were part of the treatment process. They also felt that they could make their own decisions in their treatment based on the new knowledge they had obtained from the program about their disease. The patients expe- rienced a sense of control over the treatment due to the

perceived freedom of being able to go back and forth in the program and work at their own pace.

Be one’s own guide The patients noted that being involved in the treatment and making their own decisions in the program created a feeling of being in control. The feeling of being in control made it easier to take difficult steps forward in order to improve their health by changing their negative thinking and behavior.

“Realizing that it’s up to me how I deal with life. Per- haps you can get that out of such a program. Not believing that the healthcare service should help me with everything. I’m not a child who needs their mom and dad to help, I’m an adult and I have to take charge of my life, and it’s up to me what I make of it” participant no.14 Female.

New insights The patients reported that learning about their disease helped them gain new insights. Working with the pro- gram was helpful to gain a new understanding of how to live with CVD and depression. This also helped them perceive their situation as less stressful and made it easier for them to make decisions in the program concerning the necessary steps to change their negative emotions, thoughts, and behaviors.

“Because there’s a fear linked to this issue of the heart not behaving. But the fear disappeared, and I learnt that the heart can cope with much more than you think. And I also learnt that this little leakage I have, that’s quite normal in old age” participant no.11 Female.

Freedom The patients experienced a feeling of freedom regarding the program. Having the possibility to influence the date and time to work with the program was perceived as flex- ible, but above all it contributed to a feeling that the pro- gram was constantly present during the whole treatment period and did not take breaks between the individual treatment sessions. The experienced freedom motivated the patients to continuously work with the treatment to achieve changes and take control of their own health.

“One advantage… In other words, in a physical meet- ing there is… It’s perhaps that you have a physical meeting today, and then you meet again in two weeks. The advantage here was that you worked with the program during this time” participant no.10 Male.

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Table 3 Coding schedule

Meaning unit Code Category Theme

“Realizing that it’s up to me how I deal with life. Perhaps you can get that out of such a program. Not believing that the healthcare service should help me with everything. I’m not a child who needs their mom and dad to help, I’m an adult and I have to take charge of my life, and it’s up to me what I make of it.” “I really… that I made the effort to do those things that I wanted to do… that I know, that I knew before that it was good, but that I didn’t do it anyway for various reasons” “Really see yourself from outside, and how you feel and so on. You’re open in some way, and, like, want an improvement”

Being driven to change Working towards change Interest in their health Internal motivation External motivation

Being one’s own guide Taking control of the disease

“You had that realization, and that you sometimes plan afterwards not to take on too many things and so one thing at a time” “Should it be like this? Shouldn’t there be more demands? And so, I gradually came to understand that that was the point” ” Because there’s a fear linked to this issue of the heart not behaving. But the fear disap- peared, and I learnt that the heart can cope with much more than you think”

Changed thinking New knowledge as part of improving health Using the program to help control the disease

New insights

“So, the realization I had that it was OK to change my strategy, to change my personal strategy.” “I also felt in some way that what I was try- ing to convey, that came out in the e-mail. I got feedback on what I wanted” “I wrote based on how I felt. Yes, now there was, like, no time limit” “The advantage here was that you worked with the program during this time” “And there are painful things that affect me deeply, so in any case I sit there in peace and quiet, and I can go away if I can’t continue”

Experienced freedom working in the program Flexibility in program motivates

Freedom

“Yes, it’s more… cognitive behavioral therapy is more work, but it also produces results” “Sometimes maybe you felt that, shit, perhaps I haven’t done as much as I should have with this homework this week” “I have what they call procrastination behavior, and that meant that I felt I was always slightly behind. And that I then got reminders, and it was good that I got reminders, because I needed that kick, as it were”

Experiences requirements in the pro- gram as difficult The program is perceived as demanding Requires your own work effort

Demanding work Not just a walk in the park

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Not just a walk in the park In this second main theme, the patients describe the work in the program as demanding and emotionally challenging but necessary to achieve a change in their negative emotions, thoughts, and behaviors. Not all the patients participating in the program were satisfied with

the program and some of the content was experienced as demanding and difficult.

Demanding work The program was in some parts perceived as demanding and the patients had to work harder than they expected.

Table 3 (continued)

Meaning unit Code Category Theme

“You try to repress things sometimes, unfortunately. Yes, it’s both good and bad, but eventually it re-emerges then, but no, I think what’s worth most is that you have to, err… think about it and above all look forward. That’s what has helped most, that there’s a change for the better in every- thing, both physically and mentally. That’s what I think has been sensible.” “Yes, then I cried and had… because there were questions that I just felt, ow, now you’re pushing with all your might, and then I started crying. That was sensitive” “There was a lot of these, that you were forced to reflect on things that you didn’t have. That you’d buried a bit” “Too often, perhaps, people feel so excluded and lonely with those worries they have in connection with these things”

Uncertainty Anxiety associated with heart disease Feeling betrayed

Evoking emotions

“I perceived it almost as if perhaps it wasn’t designed for a… someone who works, like, and has a lot of different types of activities” “It meant that these final modules, where you had to weigh up your various activities over the days, for example, they became a little hard to deal with, I would say. I gave up a little bit there. It became a bit complex to sit down and do it”

Wrong perspective on the disease Uncertainty about th

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