Lived experiences and caring needs in young adults diagnosed with cancer

Aims and Objectives: To explore the lived experience of young adults diagnosed with cancer and to increase our understanding of how to help them with their caring needs. Background: Being diagnosed with cancer is normally related with an existential crisis. This indicates that the individual cannot avoid thoughts of death, loneliness, guilt, and meaninglessness. In person ‐ centered care, the caretaker should have a holistic view of the person. Professionals must meet the patient´s different needs to strengthen health and well ‐ being for the diagnosed. This approach encourages the traditionally passive patient to become an active consumer who works in partnership with the healthcare provider. Design: For this study, a content analysis of narratives was conducted, targeting age groups of 20 – 29 to take part of young adults' experiences. Methods: Qualitative analysis of narratives and followed checklist (e.g., COREQ). Results: During the analyzing phase, two main themes emerged: Interactions with Professionals and Cancer Voyager. In the results, both positive and negative feelings regarding encounters and support received from and last but not least switching to patient ‐ centered care, we can offer effective and evidence ‐ based care tailored for this population. has


| INTRODUCTION
Each year in Sweden, about 800 people between the ages of 15 and 29 are diagnosed with cancer. Worldwide, this is a large and important healthcare consumer group with unique long-term support needs. 1 The immense progress in cancer treatments over the past 2 decades has increased the population of young cancer survivors, 2 with a corresponding increase in demands on healthcare organizations and society. 3 Living with a life-threatening disease at a young age can have a significant impact on the existential dimensions of life.
Between ages 15 and 29, psychological development is closely related to the growing adolescent body. Adolescence involves a transition from searching for one's identity to finding out who one truly is or wishes to be. 4 This critical transition can affect psychological fundamentals, impacting normal young adult development. 5,6 The Internet and social media are now part of everyday life and the use of blogs is commonplace. Previous research has highlighted the role of blogs as a form of self-therapy, 7

and the Young Cancer (Platform)
provides encouragement and information about blogs for young people with cancer.

| BACKGROUND
Adolescent and young adult oncology (for those aged 15-39 years) is a relatively new field of clinical practice and research. The number of new young adults diagnosed with cancer each year is an estimated one million worldwide. About 82% of these will be cancer survivors who are at risk of late treatment-related complications; cardiotoxicity, second primary cancers, cognitive shortfalls, fertility issues, changes in sex life, and psychological issues. 8,9 These complications may result in poor health, stigmatization, and fewer opportunities to become established in the labor market. 10 According to Sand and Strang, 11 cancer diagnosis is commonly associated with an existential crisis, where the individual has persistent thoughts of death, loneliness, guilt, and meaninglessness.
Often referred to as border situations, these important life events can have both positive and negative consequences for the individual.
With every individual, however, the affected person must adjust their approach to life, altering them in ways that are both intense and indefinable. [11][12][13] In the long run, border situations can support personal growth by prompting a re-evaluation of the meaning of one's life. [11][12][13][14] These existential challenges are driven by the human search for meaning and purpose. Young adults with cancer are likely to experience the suffering caused by helplessness and an inability to affect the course of the illness. 15 The concept of suffering relates to experiences of pain and the darker existential focus often associated with disease. 16 According to Eriksson,17 difficulties in the search for fellowship with others, including family members, friends, or people who share the same experiences, may also cause suffering.
To help to alleviate suffering, the healthcare provider must respect and acknowledge the patient's dignity 17 by taking into account the uniqueness of each individual's understanding and experience of their disease. 15 In person-centered care, the caretaker must adopt a holistic view of the patient to ensure that their needs are met in strengthening health and well-being. This approach encourages the traditionally passive patient to become an active consumer, working in partnership with the healthcare provider 18 ; in other words, person-centered care is grounded in the patient's own life story. To meet the individual's unique needs, staff must address the physical, psychosocial, and relational dimensions of care within the healthcare environment. 19 The presence of a nurse during treatment is a key factor in facilitating the partnership approach that patients need. 20,21 This issue has not yet been investigated in the population of young adults diagnosed with cancer, because there is, as of yet, no adequate ethical and practical platform for a person-centered approach. 22 In this study, researchers use the phenomenological term lived experience. Lived experience is used to describe a phenomenon that exists in a person's everyday life. 23 To describe this phenomenon researchers, have to use an insider´s view, which means that the data is built from a self-referent perspective. To understand this perspective, researchers have to take details of participants' lived experiences in a specified time period in their lives. 24 Lived experience is considered a favorable method in describing the connection between everyday experiences told by a selected group of participants at a specific time in their lives, with the aim to address issues such as existential, physical, and psychological experiences. 25

| Data collection
The material was found at a national support group for cancer. When reading the narratives, the study aim was used as a guideline, and relevant words were marked in the text. The participants were not asked to participate but had agreed to share their stories on an official platform with no restrictions on data sharing. The process of the study was followed through using a checklist (e.g., consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups) (see File S1).

| Participants
The participants were eight young females (aged 20-29 years) who had been diagnosed with cancer and shared their thoughts on everyday life through blogs (in Swedish). The duration of blogging at the time of the study ranged from 6 months to 5 years. The content of the selected blogs aligned with the study aims. All participants were members of an Internet platform for young people. 29

| Data analysis
To begin, the authors read through all the material (268 pages), marking the text in different colors according to its relevance. This generated a number of small groups in different colors that could all be linked to the study's aim. When this process was complete, the data were further condensed while retaining their meaning, reducing the number of groups (see example in Table 1). This process T A B L E 1 Example of a unit of analysis  continued until sentences could not be further condensed without loss of meaning. The numerous subthemes were then assembled as a mind map, providing a helicopter view of the larger themes to which the subthemes seemed to belong. The final outcome was two themes and five sub-themes (see Table 2). To protect the identity of the participants, all data were anonymized and stored; each participant was assigned a unique number (from 1 to 8). 28 In addition to trying to protect the identity of the participant, the original quotations were translated into English, not word for word, but rather to convey the meaning of the original quote made by the participant.
The analysis followed Skott 28 procedure for interpreting text without losing track of the story's meaning, informed by the study aim to maintain relevance. Based on Skott's 28 account of how to read a text as either plot or theme, the authors adopted a thematic approach, as the stories felt more like abstract data.

| Ethical considerations
When using shared blog data for research purposes, certain ethical considerations must be respected. When an individual logs on to a blog platform to share their stories with other users, they agree that the information may be used by others. 30, 31 For the purposes of this study, all participants were asked to share their lived experiences through blogs accepted by the platform for young cancer patients.
They were informed by the platform that others could access their thoughts and feelings, and they fully accepted this, as they wanted others to learn from their life stories. Participants were free to shut their blogs down and deny access at any time during the process.
Their identities are protected here by the use of paraphrasing rather than direct quotations. 32,33 As this study was conducted as part of an advanced educational program, ethical approval is not required under Swedish law. 34,35

| RESULTS
The results are presented under two main themes, Interactions with Healthcare Personnel and Cancer Voyager, which are further illuminated by subthemes (see Table 2).

| INTERACTIONS WITH HEALTHCARE PERSONNEL
The The findings indicate that the participants felt they were not properly informed about upcoming tests and treatments, and that they were regarded as "people with cancer" rather than as individuals. Participants found that on trying to confirm the information given, the answers they received tended to differ from earlier information. In their fragile state of mind, this was seen to amplify their own worries and stress, as inconsistent information from professionals compelled young adults to search for reliable information about their condition. Another aspect of this information problem was that those who contacted them rarely had any connection with them as a patient, and they were referred to someone else when asking follow-up questions. As a result, the participants had to spend hours searching for the right person to answer questions arising from the inconsistent information they received. The participants also described their meetings with healthcare personnel as positive and an essential part of their extended treatment process. They felt that those who spoke to them treated them with respect, and that structure, planning, and execution were good.
The participants also felt that they could comprehend the information provided in these meetings; the fact that all of the relevant professionals were in the same room meant that the participants and their relatives could ask any questions they needed to.

| Alienating versus supporting encounters
For the participants who were struggling to cope with the side effects of their treatment, having to deal with caregivers who seemed stressed, disinterested, ignorant, or oblivious to patient care was experienced as diminishing, hurtful, and weakening. Thoughts such as The participants cited lived experiences of caregivers' disinterest in the person behind cancer and ignorance of their real needs as their reason for not questioning the care they received. They failed to take an interest in the many treatments they had to endure, even when the execution of that treatment differed from what had previously been agreed upon. They expressed feelings of just wanting to get off the "cancer train" and to deal with the consequences later. All of the participants felt numb in relation to their care and providers and felt they never wanted to set foot in a hospital again once their treatment was complete. They had developed negative feelings about hospitals and care, including panic, worry, nausea, and anxiety attacks. These feelings persisted after they had finished treatment and resurfaced whenever they got a letter or phone call related to the hospital.
No more blood pressure control, no EKG, no measurements of my pulse or saturation. I am left all alone to ask 'am I worse or better?' They left me alone, with death hanging around my neck. All that I feared to feel in order to survive this is like dark shadows around my head. Did I really survive? Am I still alive? Or is this all just a sick joke and will everything be taken from me again? (Blog 7) In encounters they described as supportive, the participants felt that their questions were answered; professionals took their time and were interested and present. These caregivers were described as kind, very patient, and not afraid to show their own emotions. The participants characterized these professionals as a great source of support in helping them to deal with negative feelings, alleviating their worry and anxiety. This support during their treatment gave them increased hope for the future, restoring their energy for undergoing treatment and helping them to feel happier despite the severity of the disease. Feeling respected and included as "the person behind cancer" was described as a motivating factor, enabling them to endure with hope. These caregivers were seen as allies whose expert knowledge provided a light in the darkness. These caregivers gave the participants the confidence to ask questions and to seek help when life felt difficult because it felt that someone was sharing their burden I was transferred to this very primitive oncology ward that looked more like a nursing home than a hospital.

| Physical and mental changes due to cancer treatment
The experience of pain, both physical and psychological, was an essential feature of treatment as described by the participants.
While various individual side effects were experienced as shameful -incontinence and loss of bowel control, having to ask for help with showering, and going to the bathroom-physical pain was generally considered the hardest to endure. Other physical changes such as loss of hair, muscle tone, and body parts were also hard to adapt to. Sharing feelings about death, dying, and being sick with others who had come through the same situation also gave them the willpower to push through tough treatments in the hope of being well in the future.

| Ongoing fear
During treatment, having to accept that their life was on hold cre- about what they might be without cancer, and how they would readjust to an ordinary life. Fear of relapse and how they would deal with it was common at this stage, as well as concern that doctors might not give straight answers in this regard. Thoughts about dying, which were always present, also intensified toward the end of treatment, and the participants described these as negative and depressing. Those feelings were expressed in terms of an increased need to control their health, examining bumps on their body. Normal colds and fever were no longer taking lightly and had to be checked by a doctor as soon as possible. To be able to resume a normal life, the participants said they had to learn how to live with thoughts of death and dying as a difficult but necessary part of moving forward.
This was harder for some, who reported that such thoughts undermined their will to live, requiring them to struggle each day to live a normal life. To that end, the participants developed survival strategies such as living one day at a time, blocking negative thoughts through mental training, and appreciating the life they were about to regain.
One The participants' negative feelings related mainly to lack of trust and information that was inadequate, incorrect, or difficult to understand, all of which undermined trust in the professionals. These findings align with evidence from an earlier qualitative study in Norway in which 20 young cancer survivors were interviewed about their preparedness for a return to everyday life after cancer treatment. The informants reported that they were unprepared and experienced a discrepancy between their expectations and reality, especially regarding the holistic impact of late effects. As in the present study, their return to everyday life was hindered by a lack of understanding among their networks and the professionals responsible for follow-ups. 3 This made the transition much harder than expected, leaving them isolated and feeling neither healthy nor ill, confirming Muntlin Athlin et al. 37 According to Carlsson et al., 38 making it possible for nurses to take part in a reflective group with coworkers made it easier for them to handle ethical issues that might arise during work. Also, they could establish that after 5 years, the participants still had positive effects from being part of the group. None of the participants could remember anything negative about taking part in the reflective group and most of them acknowledged that the experience had developed the way they carried out their work. 38 Our findings confirm the importance of a person-centered approach to ensure that the participants automatically become part of the team and take responsibility for themselves, and that different professionals do not tell them different things. 18 This is completely in line with Sweden's national cancer strategy, which remains to be fully implemented. It appears likely that young people themselves will be the ones to effect change through their active involvement in society, including online platforms. This is the promise of e-Health at its best; it is unfortunate that those of us who work in healthcare have not yet been able to achieve this consistently.
Regarding the theme of Cancer Voyager, participants described how life was interrupted in a way that caused suffering, and how unjust it seemed that their future plans had been disrupted. The findings also highlight the sense of powerlessness when the cancer diagnosis became real. According to Yalom, 13 all humans face the same dread: the wound of death. The only possible way of dying without regrets is to realize one's personal potential and live life to the fullest. Instead, participants reported a sense of being in limbo, forced to take on a responsibility that they did not feel ready for.
Along with the ongoing physical and mental pain, this heavy burden of responsibility caused them to feel vulnerable, prompting existential questions and fear in relation to infertility and the future. In the same context, Odh et al. 15  detected a concern about their body and sexual health. Scarring influences one's subjective sense of attractiveness, and this group of cancer survivors had a poorer body image and sense of sexual health than a healthy control group. It also became clear that young people appreciate questions about their mood and existential issues, which will require greater knowledge and courage among healthcare professionals in the future.
The present findings also confirm that participants were afraid they would be unable to bear biological children in the future. This causes grief for those rendered infertile by their cancer and changes their future plans, leading to great existential suffering. According to Carter et al., 42 some women felt that their future made no sense if they could not have biological children, leading to depression, anxiety, and sadness. 42,43 To alleviate the experience of grief and to help cancer patients to rebuild their quality of life, it is important to ensure access to social support during the course of the disease. 44 Nurses should listen to patient concerns about fertility problems associated with cancer diagnosis and should encourage conversation about this issue. In addressing the patient's sense of loneliness in this context, supportive information and guidance is crucial; the nurse should listen to the patient's experiences and should be able to answer questions to provide psychosocial support. 45 To support young adults with cancer, the nurse must be able to capture their individual existential experiences. 46 According to Muntlin Athlin et al., 37 what the patient undergoing cancer treatment and rehabilitation really needs is some way of recovering their selfsufficiency and dignity. They found that patients ranked their relationships with physiotherapists and physicians higher than those with nurses because the former groups empowered them to cope in an acceptable way. Muntlin Athlin et al. 37 called for more research in this area, emphasizing that a tailored personal relationship, effective communication, and trust building through direct contact with a nurse should be central to cancer treatment and care. The present results confirm that individuals affected by cancer at a young age found their situation unfair and difficult to cope with because most people of their age had a healthy lifestyle. As illustrated in the subtheme, ongoing fear, constant fear of relapse, and death create feelings of uncertainty that affect the patient's whole existence.
Mortality, which was not previously a concern, became a reality only when they received their diagnosis. Odh et al. 15 also reported that a cancer diagnosis raises this issue for young adults, causing feelings of anxiety, fear, and uncertainty about the future. Axelsson et al. 47 argued that patients may find it hard to burden relatives with existential thoughts, which therefore remain unvoiced. Ramondetta et al. 46 noted that nurses can play an important role in providing supportive care by encouraging patients to talk about these issues.
Participants in the present study felt that none of their relatives could understand what they were forced to go through, and this led to feelings of loneliness. Deckx et al. 48 found that the loneliness experienced by cancer patients can be alleviated by social support from others who have had the same experience. Young Cancer (an online platform for young people in Sweden) introduced the concept of "cancerous hangover" to describe the physical, psychological, and social aftermath of a cancer diagnosis. The objective is to stimulate hope for the future by ensuring that no cancer patient will have to fight alone, even after treatment. 29 Similarly, Eriksson 17 discussed the phenomenon of the "life suffering" that sickness creates, and how this can cripple the patient psychologically for life. According to Eriksson, life suffering can be prevented if it is acknowledged at an early stage by encouraging patients to talk about feelings that make no sense to them but account for their suffering. As described here, such thoughts might include feeling scared after being pronounced healthy or not feeling healthy even though one's cancer is gone.
Sweden is currently in the process of switching to personcentered care and e-Health support and apps are in development.
Although healthcare provisions for cancer rehabilitation are governed by national guidelines and policy, 1,49 only two out of three cancer patients are currently offered a contact nurse, 50 and this is a crucial issue in providing further support for this group. While nursing research confirms the importance of a holistic perspective, there are major financial concerns in maintaining the level of experienced nurses. This is an acute problem in Sweden, where many professionals will retire in the coming decade, and it may prove difficult to recruit and retain new nurses.
As Chenail 51 noted, blogs are an attractive setting for qualitative research because data are easy to access and collect-that is, researchers can use blogs both as a source of data and as a means of obtaining information or sharing progress with others. In particular, blogs are useful because of their often personal nature. Interviews with the bloggers to get their opinion and to be able to ask following questions, would have been preferable. Since this study is based on a set frame from a nursing program's final essay, this was not possible to achieve. The authors' review of the findings showed that the results of this study were enough to go forward with the article. This is confirmed by the present findings, many of which are novel and conflict with expectations. To ensure the study's validity, it was discussed and viewed by a number of objective third parties. The study was conducted over a longer time span to ensure the quality of the data, remaining as open and rigorous as possible throughout in relation to the informants' narratives to further assure that validity. 52

| CONCLUSION
Along with the ongoing physical and mental pain, this heavy burden of responsibility caused this young group of people to feel vulnerable, prompting existential questions and fear in relation to infertility and the future. Also, participants expressed that healthcare personnel seemed unwilling to talk about existential matters with them, leaving them with anxiety and sadness. They ranked their relationships with physiotherapists and physicians higher than those with nurses because the former groups empowered them to cope in an acceptable way. Participants in the present study felt that none of their relatives could understand what they were forced to go through, and this led to feelings of loneliness. They found it nearly impossible to share existential thoughts with relatives, which left their concerns unvoiced. Earlier studies in this context found that the loneliness experienced by cancer patients can be alleviated by social support from others who have had the same experience.

| Implications for nursing practice
For this group of young people with cancer, it is essential to offer tailored, personal relationships, effective communication, and trust building through direct contact with a nurse. There is a need in nursing education to address existential matters, to make nursing students ready to be approached by such questions in their professional work. Also, we believe that the experienced nurse must be given means to feel confident to handle questions about existential matters. The nurse has to have the courage to meet and challenge the vulnerability in this group of cancer patients. This can only be possible if the nurse has the opportunity of regular, critical reflection with a supervisor. Collaboration in teams and with support groups will make nursing care more comprehensive in the future. Being presented with the possibility of a regular group session both within the same profession but also with other professions can be positive for the participants in the group sessions. Getting advice and support, not only from coworkers, but also from other professionals were found to enhance the experience of clinical supervision according to Hyrkäs et al. 53 Developing e-Health with digital tools is desirable for a successful transition to person-centered care. More effective evidence-based care can be tailored for this population, allowing the patient to take responsibility for their own knowledge, needs, and support. With this understanding, healthcare personnel will be able assist young adults with cancer in their care and treatment to make their journey less difficult.

DATA AVAILABILITY STATEMENT
Data are openly available in a public repository that issues datasets with DOIs.