A digital psycho-educative program addressing women's fear of cancer recurrence: A qualitative thematic analysis of informants' own written texts

Abstract

Aims:

Going through treatment for gynecological cancer leads to significant changes in a woman’s life. In addition to physical ailments such as abrupt menopause, fatigue, pain and lymphedema, many live with fear of cancer recurrence. The aim of this study is to explore how women treated for gynecological cancer describe their fear and how a digital psychoeducative program can help them manage it. Methods: The findings are based on the notes written by 53 women in a digital psychoeducative program called Gynea. Thematic analysis was used to analyze the written texts. The COREQ checklist was followed. Results: Six themes emerged through thematic analysis. The first four themes were related to the women’s descriptions of fear: Distrust of the body, Being alert to bodily changes, Existential fear for the future and Unmanageable fear. The last two themes related to the women’s descriptions of how the Gynea program benefited them: Knowledge provides insight and understanding and Support and strategies improve control and everyday life. The results indicate that the digital program has the potential to help women manage their fears after treatment. Activities to foster insight and understanding, factual information about which recurrence-related symptoms to watch out for, and exercises for managing overwhelming fear were found to be helpful in the rehabilitation process. Conclusions: The digital intervention holds promise in a future that is moving toward increased digital follow-up. Registered nurses have a central role in this rehabilitation process, both in terms of follow-up related to the individual patient and in the development of future digital psychoeducational programs. Giving appropriate information, knowledge, tasks and exercises, the period after cancer can be less dominated by fear and anxiety for women who have been treated for gynecological cancer. Trial Registration: The Gynea project is registered as a clinical trial, ID: NCT 04414436.

Introduction

Survival has become a major focus of cancer research in recent years, with a shift from diagnosis and treatment to the inclusion of survival as an ongoing process. Women who have experienced various forms of gynecological cancer struggle with major changes and challenges, such as menopause symptoms, lymphedema, pain, sexual health issues and fear of cancer recurrence. ¹ Emerging literature demonstrates that fear of cancer recurrence is a major challenge for cancer survivors in general,^2–6 and gynecological cancer survivors in particular.^7–11 A review by Simard et al. ⁴ showed that, even though survivors reported low to moderate levels of fear of cancer recurrence, they considered it one of their greatest concerns, and it was the most frequently mentioned unmet need. The review indicated that the fear of cancer recurrence remained consistent throughout the survivorship journey. Factors such as younger age, the presence and severity of physical symptoms, psychological distress and lower quality of life were linked to heightened fear of recurrence. ⁴ Additionally, fear of recurrence has been connected to depression, diminished quality of life, impaired functioning and excessive use of health services. ³

For gynecological cancer survivors, the fear of cancer recurrence appears to their greatest concern and the most frequently reported unmet long-term need. ¹⁰ A review by Ozga et al. ⁹ they revealed that fear of cancer recurrence was a significant concern for both older and younger women, regardless of whether they were in the early or advanced stages of the ovarian cancer disease. Additionally, this fear was particularly prevalent around the time of cancer follow-up examinations, with many women reporting that they did not receive sufficient support for their concerns about recurrence. ⁹ Qualitative studies on women who have experienced gynecological cancer have shown that fear of cancer recurrence is a dominant and persistent symptom across all gynecological cancer diagnoses and FIGO stages.^1,12,13 A recently published study ¹³ that included in-depth interviews with women found that the period leading up to the first follow-up at the hospital, 3 months after treatment, was described as particularly challenging by the participants. This was true regardless of whether they had a good prognosis or advanced disease with a high risk of recurrence. The difficulty of this period has been highlighted in several other studies. ¹ The profound fear that the cancer might return or that the treatment had failed was especially demanding and dominated the thoughts of many women.

Various forms of follow-up interventions after cancer, and for fear of cancer recurrence in particular, have been offered.^3,14–16 A systematic review and meta-analysis of 23 controlled trials of psychological interventions for fear of cancer recurrence ³ revealed a small but robust effect at postintervention that was largely maintained at follow-up. Another systematic review of psychological interventions for breast cancer survivors ¹⁶ showed that psychological interventions were effective in reducing the fear of cancer recurrence, especially mindfulness and acceptance therapy. A review of mind–body interventions for fear of cancer recurrence ¹⁴ suggested that these interventions may be useful for reducing this fear. In a meta-analysis comparing the effectiveness of digital and face-to-face interventions in reducing fear of cancer recurrence, ¹⁷ digital interventions were found to be comparable to face-to-face interventions. In this field of rehabilitation, registered nurses have an important role not only in terms of providing information and support to the individual patient, but also in the development of psychoeducational interventions that can be included in rehabilitation follow-ups. ¹⁸ The aforementioned review also highlights that living well with cancer has become increasingly important as survival rates for many cancer types rise. Consequently, the expertise of registered nurses can significantly enhance the quality of rehabilitation for cancer patients. ¹⁸

In summary, fear of cancer recurrence is a dominant challenge for many women after treatment for gynecological cancer. When active treatment is over, patients are discharged to a changed everyday life and an emptiness that is described both as feeling ignorant and helpless as well as terribly demanding. Although various forms of psychological interventions appear to be effective in reducing this fear, few qualitative studies have explored how women express this fear and how digital programs can be useful in managing it.

The present study aimed to explore how women who have experienced gynecological cancer describe their fear of cancer recurrence and how a digital psychoeducational program can help them manage this fear.

Methods

The present study has a qualitative research design that explores what fear of cancer recurrence looks like for women after treatment for gynecological cancer, as well as how they describe the impact a digital intervention can have on their fear. This study is part of a larger randomized controlled waiting list trial that aims to test the feasibility and acceptability of the internet-delivered psychoeducational intervention Gynea.

Study context

The e-program Gynea was developed by an interdisciplinary professional and research group consisting of a nurse, a web designer, a gynecologist, a psychologist, a supervisor, an artist and five end users who had previously been patients. The development process was inspired by and in accordance with the UK Medical Research Council’s framework for developing complex interventions, ¹⁹ aiming to support women's psychosocial needs in the follow-up period after gynecological cancer treatment. ²⁰ The full developmental procedure for the intervention is described in studies by Sekse et al. ²⁰ and Flobak et al.. ²¹ The intervention consisted of a structured 6-week program presented to participants over a 6-week period, with one module each week. More detailed information about the intervention is provided in Sekse et al. ²⁰ and Breistig et al.. ²²

In one of the six modules fear of cancer recurrence was thematized, where both the useful and the less helpful fears were addressed. The module provided insight and knowledge about useful fears that encourage women to prioritize self-care, be alert, and monitor the body for signals and symptoms of recurrence. According to each participant's specific gynecological cancer diagnosis, the content of the program provided specific symptoms that they should be watch for. Unhelpful fears – those that survivors could not do anything about and could be overwhelming – were also described. Concrete and practical advice, strategies and exercises to address these fears, such as creating distance from thoughts and setting aside time for worries, were offered. Throughout the module, there were also some questions with open boxes for answers and reflections related to how each woman experienced fear and how it affected her everyday life. The questions in the open boxes included “What worrying thoughts do you have?” and “How do the worrying thoughts affect you and the people around you?” At the end of the module, users were asked, “What did you find most important and useful in this module?”

Recruitement and sample

Participants were recruited to the Gynea study by open invitation, as further described in Breistig et al.. ²² The inclusion criteria were: (a) completed treatment for gynecological cancer in the past 6 weeks to 2 years; (b) aged >18 years; (c) able to read and speak Norwegian; and (d) internet access. The exclusion criteria were: (a) participants with known cancer recurrence; (b) current or historical severe mental health disorders; (c) insufficient cognitive or Norwegian language skills; and (d) no intent to participate in curative treatment. Eligible and interested participants were sent to a digital site using BankID and two-factor authentication. Information about the study was provided both verbally and in writing (digital), and the informants gave informed consent before enrolment in the digital program.

In total, 70 patients were recruited to the digital program between May 2020 and September 2022. They had all undergone various forms of treatment for gynaecological cancer, ranging from 6 weeks to 15 months. When it came to the module fear of cancer recurrence, 53 out of 70 women had written text in the open boxes in the relevant module, comprising the data for the present study. In December 2023, data collection was carried out by the second investigator (MA), by downloading all the text that the women had written in text boxes when working with this specific module. The text was collected into a separate word document.

Data analysis

Qualitative research design and the thematic analysis of Braun and Clarke ²³ were used to understand and interpret the meaning of the text data where the research questions guided the process. This reflexive thematic analysis is a flexible method that can be adapted to different types of data and research questions. It allowed us to delve deeply into the text and identify patterns and themes. Both authors read all the texts several times, which Braun and Clarke ²³ called data familiarization. During this phase, we generated initial codes representing the thematic elements emerging from the text. We conducted multiple readings of the women's texts, reflecting on the individual words and expressions, aiming to understand their experiences of fear of cancer recurrence and how they were helped by the digital program. We then searched the texts for meaning units that represented the themes. These preliminary thematic insights were read and discussed in line with the emphasis by Braun and Clarke ²³ on refining themes to ensure coherence with the data. Gradually, we engaged in open discussions about emerging themes. A series of provisional themes was identified. Through several iterations, different approaches to organizing the material were evaluated. Consequently, the text was reread, revised and condensed before six themes were finally established.

The last author (MA) extracted the data from the women's responses into the digital program, stored on the hospital's research server, whereas the first author (RJTS) became increasingly involved throughout the analysis process. Both authors were involved in reviewing and discussing the themes. At the end of the study, the last author (MA) provided feedback on the final themes.

Ethical considerations

We used the consolidated criteria for reporting qualitative research (COREQ) to support the research process and to ensure the study's rigour and transparency. ²⁴ The study was approved by the Norwegian Research Ethical Committee in 2019 (reference number 44602). The participants received oral and written information and provided written consent before any study-related activities began. To ensure security, the participants had to log on using BankID (two-factor authentication) and the web solution was assessed and approved through a risk and vulnerability procedure at the University of Bergen. The data were stored on the hospital's research server. All transcripts from the program were anonymized with regard to personal information and names. Informed consent was collected from all participants, ensuring they were fully aware of the study's purpose, procedures and their right to withdraw at any time without consequence. The authors were both responsible for the analysis and quotes from subjects were used throughout the findings to allow their voices to emerge.

The second investigator (MA) extracted the data from the women's responses into the digital program, stored on the hospital's research server, whereas the first investigator (RJTS) became increasingly involved throughout the analysis process. Both investigators were involved in reviewing and discussing the themes. At the end of the study, the second investigator (MA) provided feedback on the final themes.

Results

With the research question guiding the process and through thematic analysis of the women's written descriptions of their fear of recurrence and use of a psycho-educative intervention, six themes were identified. Four themes dealt with the women's descriptions of cancer recurrence as: Distrust of the body, Being alert to bodily changes, Existential anxiety about the future and Unmanageable fear and anxiety. The two last themes dealt with how the digital program helped them manage their fear, as; Knowledge provides insight and understanding and Coping strategies when fear takes over.

Distrust of the body

Considering their unexpected experiences with cancer, in which the women had received little or no bodily signals that something was wrong before they were diagnosed, they feared that the cancer would return and potentially turn their lives upside down again. The women feared that the treatment they had received had not been sufficient, and that the cancer had not really gone. They also expressed a lack of confidence in their ability to detect any changes indicating a relapse and a fear of not recognizing symptoms. For many of the women, when the cancer had first occurred, their bodies had not given them any form of warning that something was wrong in the form of symptoms. One woman, Anna, wrote, “I felt healthy when it was discovered that I had cervical cancer! How am I supposed to notice if something is wrong again?” Some women described feeling as if their bodies had betrayed them by carrying a secret without telling them. The possibility of a relapse somewhere else in the body was also a concern that worried the women and contributed to their fear.

The women's written material revealed that they were also afraid that the healthcare system would not detect a relapse in their gynecological follow-ups. One woman said that the doctor had told her that the cancer could come back, but she did not know where:

I have had my ovaries and uterus removed, so where will it come back? And what changes should I notice? And what if another cancer comes that I am not checked for during the follow-up! (Tina)

Fears were also related to the rapid progression of cancer, as some had experienced the disease progressing between two follow-ups:

In my case, the cancer developed quickly, from nothing on the cell sample to cancer in one year. I worry a lot that it will be too late to do anything, and that I will die because they don’t discover it in time. (Illiana)

Low confidence in both their own monitoring and the follow-ups created fear and anxiety among the women. One of the women wrote, “I will probably never get over the fear of relapse … it sits deep inside me forever” (Hanna).

Being alert to bodily changes

The women's written text showed that they were monitoring their physical symptoms to detect any possible recurrence of the disease. This was important to them but also difficult because they constantly felt bodily changes and were unsure whether these symptoms could mean the cancer was back, as one woman wrote, “I constantly feel new things with my body and wonder if it could be something new coming” (Hanna). Feeling changes and ailments and not knowing the cause of them maintained the women's fear that something was wrong.

I have had a lot of pain in my stomach that bothers me in everyday life, and that triggers the fear that something might be wrong. What if this pain is a warning for … It feels difficult not to get an answer as to why [I have this pain]. (Anca)

Being alert and paying attention to what their bodies were “telling them” while they tried not to let worry and anxiety take up too much space was a demanding exercise:

The problem is that you must not become paranoid and think that everything is cancer, but at the same time, you have to be aware and notice if there are changes that could be cancer. That balancing act is difficult. (Mille)

Worries and fear of cancer recurrence made the women tired. When they were tired, they felt more vulnerable and even more susceptible to worrying thoughts and anxiety. The physical ailments, both those that were permanent and those that came and went, reminded the women of the cancer and contributed to keeping the fear alive.

Existential anxiety about the future

The women's fears were also related to their very existence. In their writings, they expressed their fear of dying and of having to leave life and their loved ones. The fear of not being able to take care of their family or close others was threatening and overwhelming. As one woman wrote, “I’m not so afraid of relapse for my own sake, but for my children and spouse. I see how anxious they are for me” (Illiana).

Among other things, the women were worried about how their families would manage without them, and all the things they would have to figure out and take care of if she died:

I worry about how my daughters and my husband will be if I pass away in the near future … in addition to the fact that I may not experience the joy of having grandchildren … I have prepared an email to my daughters. (Tutta)

For those who did not have children or a partner, this lack of family became deeply existential in the face of becoming ill and undergoing treatment. One of the younger women who would never be able to have children because of her cancer treatment described the difficulties of accepting this, in addition to the challenges of finding a partner when she had not even been formally declared cancer-free:

Since I can no longer have children, I am worried that I will not feel that I have a worthy and meaningful life. I talk a lot with my friends, especially those who don’t want children themselves. Then I feel safer. I realize that the worry is about the fear of being alone. (Camilla)

The existential pain contributed to many women's uncertainty about life and the future.

I am kind of waiting for reality to hit, so that I will have a recurrence. I also struggle with guilt that I do not appreciate each day more because tomorrow I might suddenly be sick again. I am afraid of experiencing that terrible feeling that comes like a bolt from the blue, as it did when I was told that I was sick again. I somehow do not dare to start living because I am constantly waiting for negative news. (Mona)

Unmanageable fear

A fear that could become all-encompassing and overshadowing in everyday life was also described in the women's notes. The appointment for follow-up at the outpatient clinic was a trigger for fear that could become so strong that it became uncontrollable and turned into anxiety. Thus, the days or weeks before follow-up became an extra difficult time:

The fear of relapse is great. It becomes extreme when it is time for a new follow-up. I feel like I am waiting for a death sentence, even though I know that it is wrong to think like that. (Gina)

This time before follow-up appointments were significant in most of the women’s lives. The follow-ups represented an ambivalence; on the one hand, the examination helped to reassure them by ensuring that there was no spread and relapse, and, on the other hand, it made it difficult to move forward in life, as it was a constant reminder of the possibility of a deadly relapse.

The fear could manifest at any time. Many felt vulnerable, especially when their thoughts were not occupied, when their thoughts were wandering or moving, and in the evening, when they went to bed. For some participants, sleep had become a challenge. One of the women wrote, “I can wake up at night with anxiety attacks” (Anna). The need for information about their situation led many women to search the internet, but this could lead to increased fear:

Googling my type of cancer made my anxiety reaction ten times worse. Reading about the survival rate made me more certain that I was going to die, and I became very hung up on the statistics. Now I have learned that no statistics can predict how I will fare. (Helen)

One of the women summarized what most of them expressed as follows: “I am afraid of relapse and of being told that nothing can be done. I get tired of these thoughts, and sometimes I also get anxious – then, my situation feels totally unsustainable” (Kaia).

Knowledge that provides insight and understanding

In the module on fear of cancer recurrence, the women could read about both useful fears that encouraged them to be vigilant about their own bodies and health and unhelpful fears that could become overwhelming and all-encompassing. This normalization of the fear of recurrence after cancer, described as a common and natural reaction to cancer, was useful in itself for most of the participants. The insight helped them to understand themselves in new ways:

The information in this program has helped me to understand the aftereffects of cancer treatment and thus also my own experiences. By understanding my own situation, it is also easier to accept the situation. (Lina)

Many reported that the digital content in the program helped them to understand what had happened to them after going through illness and treatment. Knowledge and insight helped the women see themselves and their situations in new ways, which in turn helped them face their fears and see them as a natural reaction to what they had been through. One of the women's notes shows how she tried to deal with this new insight by distinguishing between “just a thought or feeling” and the truth that something was wrong:

I try to think that these are just thoughts and that I shouldn’t spend so much time on them because they don’t bring anything good; it doesn’t help me to give these thoughts space. (Olla)

The new knowledge and insights also helped the women begin moving toward acceptance:

The module has been helpful for me to acknowledge the feelings I have regarding the fear of recurrence, without letting them take up too much space – and this helps me to look forward! (Illiana)

The module contained information about specific symptoms that could be signs of recurrence, depending on the type of gynecological cancer the women had had. This provided insight into what bodily changes each woman should be looking for, which was described as a great help:

I found the specific list of symptoms very useful for me. It helps me in everyday life to cope when anxious thoughts and physical discomfort arise. (Sina)

and:

Very good to get concrete advice on what to look for. That I don’t have to be afraid every time it hurts here and there. (Kriss)

The content of the program also encouraged the women to write down their thoughts about what was difficult and what they were worried about, both in that moment and for the future. Several found it helpful to clarify and put into words what was difficult:

It's nice to put words to the fear as well as it is nice to know that I’m not alone! (Mina)

Knowing their reactions and feelings were natural and normal given the situation was important in itself, and seemed to help them process their cancer experiences.

Support and strategies that improve control and everyday life

The fear of cancer recurrence module also addressed what individuals could do when fear became too overwhelming and all-encompassing in their lives. Reading about and practicing different coping strategies, such as modifying their thinking patterns, limiting worrying thoughts, and distinguishing between feelings and reality, were some of the strategies included.

I have taken the advice to set aside 15 minutes every day to let my thoughts come, instead of letting my thoughts and worries wander freely, especially at bedtime when I have gone to bed – because it has led to insomnia. The new strategy works very well, and falling asleep has improved. (Sina)

Another woman wrote that she had introduced 10 min of worry time every day, at the same time each day. Her worries were numerous and intense, and, in this way, she tried to channel her worrying thoughts to a specific time of day so that they wouldn’t take over and control her and her time:

I have introduced setting aside time for worrying once a day and let it be the time to check my body – especially my legs and stomach! (Mille)

Many of the women expressed in writing that the various exercises for dealing with worrying thoughts and the focus on self-care in the modules were helpful. One practice for dealing with unhelpful worries, or the “train of thought”, involved taking control of this train and allowing themselves to worry within a limited and predetermined time frame:

I have found the good advice useful in getting rid of the train of thoughts about relapse, which I didn’t even realize I had. Now I put my thoughts on a train of thoughts when they come up. This means I spend a lot less time on negative, destructive thoughts about what might happen. (Kriss)

Another exercise that several of the women referred to was distinguishing between reality and emotion. Here, the exercise involved seeing the worry as “just a thought” and recognizing worrying thoughts as something natural given the situation.

The module's coverage of both natural fear and fear that can become all-consuming and controlling in one's life was both new and useful for the women:

The fact that there is both useful and useless fear, and that it is accepted that this is how it is, and how we can experience it, was new and helpful for me. It was so good to get a list of what I should actually be aware of in terms of physical symptoms and ailments … and it was good to have advice and strategies for dealing with worries that are not as useful … and that they are just thoughts and nothing more. And that I have a choice whether to get on the train of thoughts, and if I don’t, I can get off after a while. That there may be a need to allow myself to be worried, but that I should try to set aside time for it and then let it go. To accept that it is normal to have useless worries, but at the same time get strategies for dealing with it. (Mille)

and:

Fear of cancer recurrence is the module I have worked on the most. All the advice and exercises were very useful to me. Particularly useful was the information about what to be aware of when it comes to bodily ailments, as well as exercises to accept the fear or put it on pause. (Maiken)

Knowledge and insight, as well as various strategies for dealing with fears of cancer recurrence, seemed to be helpful for the women who followed the Gynea program.

Discussion

The findings of the present study highlight a significant fear of cancer recurrence. The women reported major bodily changes and challenges following illness and treatment, and a lack of information and understanding of these changes led to even greater fear and anxiety. The content of the e-program gave the women new insights and understanding, providing them with an overview of specific symptoms to be vigilant for and coping strategies for the fear. This content seemed to support the women's return to themselves and normalize the unrest they felt due to their situation. Furthermore, the content served as a catalyst to begin processing their cancer experiences, including their fear of recurrence, which was a path toward acceptance.

The women's notes revealed that most were neither informed nor forewarned about the physical changes resulting from the cancer diagnosis and its treatment. They described psychological reactions to these unexpected changes in alignment with findings from other studies. A lack of information and insight can lead patients to associate bodily changes with cancer recurrence or failed cancer treatment, resulting in increased fear.^1,25 Other substudies within this research reported that some women were hospitalized and referred to psychiatric health services due to this heightened fear and anxiety, which they did not understand. ¹³ In a randomized controlled trial by Olesen et al., ²⁵ fear of cancer recurrence was partly explained by patients’ lack of knowledge about alarm symptoms and what to monitor after treatment. The study showed that information and understanding were crucial for regaining control over their own lives, as was also revealed in our study. Studies of long-term survivors of gynecological cancer have reported that fear can be strongly present in women's lives even 5 or 6 years after the end of treatment, even though they are cured of the disease.^12,26 Women may live in constant fear of cancer recurrence and anxiety, and believe that they have to live with this unease for the rest of their lives, preventing them from living a more carefree life.^12,26

The women's written descriptions revealed that cancer diagnosis and treatment arouse an existential fear that includes a fear of life being shorter than expected. Research has shown that fear of cancer recurrence is a major concern for patients, including young adult cancer survivors, those with favorable prognosis, and those who have been cancer-free for a long time.^2,6,27 Even though the prognosis for cancer survival is steadily improving, studies have shown that cancer is associated with fear of death across different cancers and levels of severity. Kvaale et al. ²⁸ revealed that, in online communications about being diagnosed with and living with cancer, writers defined the cancer diagnosis as a defining moment in their lives. They described cancer as a crisis that was followed by unpredictability, doubt, grief and loss, fitting the term “existential uncertainty”. Writing and sharing their stories and connecting with others were ways of dealing with this uncertainty. ²⁸ This was also described in our findings, where the women expressed in writing the fear of leaving their loved ones without sharing these concerns with them, as they wanted to protect those close to them. Writing down their thoughts in a digital program to shield partners or close others seemed to be beneficial.

Merleau-Ponty ²⁹ argued that writing can give life to experiences that have been repressed or overlooked, thus achieving a new dimension of personal insight, and that “to name an object is to bring it to existence”. In this way, he showed that language, spoken or written, becomes an opening to knowledge and insight. Through the content of Gynea, the informants were helped to put their experiences into words, which helped them gain insight and understanding. When themes that were previously unknown were thematized, their understanding improved, and their fear seemed to diminish or become more controlled. The unknown became known, which in turn became natural and normal, seen in light of a holistic understanding of illness and treatment.

Moreover, the present study shows that the digital program seems to be successful in providing helpful information and follow-up to women treated for gynecological cancer. Our study shows that gaining a greater understanding of the effects of illness and treatment is not only about obtaining information about the illness but also about processing and integrating cancer experiences into everyday life. The findings revealed that the women had to understand themselves and the changes in their lives. This resonates with other studies that have described participants demanding more information not only about changes after the diagnosis and treatment of gynecological cancer, but also about the consequences of this on their lives.^1,13,30,31 Cancer survivors need to process and integrate their illness and treatment, as well as any changes that have occurred, to be able to adjust and move forward.

Gaining knowledge and understanding did not help the women return to who they were but enabled them to begin moving toward acceptance and integration of a new normal after cancer. ¹³ Arnold Beisser (1925–1991), a physician and promising tennis player who was paralyzed from the neck down by polio, stated in one of his most famous articles, “Change happens when you become who you are, not when you try to be who you are not”. ³² For the women in our study, this meant finding a way to deal with life as it was, not attempting to return to life as it had been before cancer. Accepting themselves with these changes was not necessarily about accepting loss. Rather, it was about being able to embrace themselves as they were and see the possibilities that life offered after cancer and treatment.

Fear of cancer recurrence also encompasses the existential aspect of being human and, in the Gynea program, the women had the opportunity to understand their lives on a deeper level – not as defined by a medical disorder but as part of human existence after being affected by cancer. We argue that this existential approach to recovery and rehabilitation is a necessary path for cancer patients in particular and for all human beings in general, as also align with other studies. ³³ However, existential concerns can remain hidden in encounters with health personnel and may even be ignored. ³⁴ It is necessary for healthcare professionals and for registered nurses to include the existential aspect in their personalized care and follow-up to care for patients who struggle with fear of recurrence. If healthcare professionals could include existential concerns as part of being human and experiencing serious illness, it would be easier to understand individuals’ concerns and meet their needs in treatment and follow-up.^34,35 In this way, the fear of recurrence can be better understood and integrated into patients’ lives, which will give the patient a better foothold for the future.

The present study highlights women's increased fear of cancer recurrence and how a digital program can provide support and coping strategies to live better with this fear. Against this background, our study and other studies highlight the need for better information and closer follow-up from dedicated health professionals, and registered nurses in particular, from the early stages of the disease and throughout the treatment and rehabilitation process.^1,13,26

A review by Justesen et al. ¹⁸ highlighted the pivotal role nurses play in cancer follow- up and survivorship care. The review also noted that patients felt comfortable with registered nurses, viewing them as trusted partners during rehabilitation. Participants emphasized the sense of security they experienced when registered nurses managed the planning and facilitation of the rehabilitation process. Moreover, digital supportive cancer care is used and has been reported to be beneficial for cancer patients, ³⁶ as also shown in a substudy of this larger study. ²²

Methodological considerations

Many women in this study discovered the Gynea project while searching online for relevant cancer information, demonstrating their digital health literacy. Additionally, the participants had high levels of education, which means we cannot ascertain the impact a rehabilitation program might have on older women, those with less education, or women from different cultural or ethnic backgrounds than Norwegian. Our findings did not identify challenges related to digital health literacy or technological difficulties, likely because the study participants belonged to the demographic group with the highest self-reported digital health literacy in Norway.

Participants were recruited to the Gynea project mainly through open invitations on social media. This recruitment strategy may have introduced selection bias because women who were interested in information and rehabilitation chose to participate in the program. Consequently, this group may not fully represent the broader population of women who have completed treatment for gynecological cancer.

Data were collected through the women's written responses in the program, where they had the opportunity to write freely about the topic through open-ended questions. Some wrote extensively, others less so, and a few provided minimal substantive text. We know little about the women who wrote little or nothing, which may be a limitation. Another limitation is that all respondents completed the program, so we do not know the experiences of those who did not complete it.

The use of the analysis by Braun and Clarke's ²³ and ongoing discussions between the two authors throughout the analysis process in the present study helped to reduce a one-sided understanding of the data. Using direct quotes from the women's texts increased transparency and ensures that the findings reflect the informants’ experiences, thereby strengthening the validity of the study.

Implications and conclusion

Based on women's own written accounts, the present study shows that the fear of cancer recurrence and increased existential anxiety after diagnosis and treatment for gynecological cancer can be significant after the end of treatment. This fear manifests itself in various ways, including distrust of the women's own bodies, caution regarding bodily changes and an overwhelming fear of the future and the unknown. In addition, the study shows that the digital intervention improved the women's knowledge, and gave them insight, understanding and different coping strategies. Thus, the findings suggest that a digital psychoeducational program such as Gynea has the potential to support women in dealing with the fears they experience and offer tools for better rehabilitation.

Digital treatment and follow-up are rapidly developing and will increasingly be integrated into the future healthcare services in the Nordic countries, where registered nurses should play an important role. They should play a leading role both in preparing patients for a changed everyday life by providing information and support, and in developing and testing various interventions, including digital ones. The present study shows precisely this, such that registered nurses can be leaders in creating digital rehabilitation program based on women's experiences with cancer and provide support and coping strategies so that women can have the best possible changed everyday life after treatment.