Perceptions of death and loss in adolescents experiencing non-terminal maternal cancer: A qualitative secondary data analysis

Perceptions of death and loss in adolescents experiencing non-terminal maternal cancer: A qualitative secondary data analysis | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Perceptions of death and loss in adolescents experiencing non-terminal maternal cancer: A qualitative secondary data analysis Leonor Rodriguez, Chloe Fyfe, Ashley Wright This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6441123/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract A diagnosis of parental cancer, even not terminal, can have a significant and adverse impact on adolescent mental health. Research comparing youth experiencing parental cancer with those experiencing parental death identified that while adolescents experiencing parental cancer showed lower levels of posttraumatic stress disorder, but both groups exhibited similar levels of depression and anxiety. In this study we explored the perceptions and experiences of death and loss in adolescents dealing with nonterminal maternal cancer. A qualitative secondary thematic analysis was carried out with 15 interviews of adolescents between 14 and 20 years of age, both males and females. Their mothers had been diagnosed with cancer between 10 and 29 months previous to the interview. The analysis yielded 4 overarching themes. Life would never be the same describes how cancer was associated with death and adolescents’ perceptions were challenged. The emotional challenges of maternal diagnosis details changes in adolescents’ thoughts and emotions, introducing fear and uncertainty which was challenging. The Systemic change in adolescents’ lives narrates the loss of family dynamics, priorities, roles and responsibilities. The symbolic loss of maternal cancer, shows how nonterminal cancer led to significant loss in adolescent sense of control, privacy and education. Maternal cancer affected adolescents lives and relationships in such a way that life was changed forever as a result. Maternal cancer has a profound effect on loss and grief in adolescents, even though cancer was nonterminal. Therefore, these experiences must be validated and appropriate supports provided. Adolescent death loss parental cancer Figures Figure 1 Figure 2 Highlights Adolescents experience the loss of family dynamics, priorities, roles and responsibilities. The symbolic loss of maternal cancer, shows how nonterminal cancer led to significant loss in adolescent sense of control, privacy and education. Maternal non-terminal cancer affected adolescents lives in a way that life was changed forever. Adolescents experience significant loss even if maternal cancer is non-terminal. Supports are therefore fundamental. Introduction It has been estimated that between 14 and 25% of cancer patients have a child or adolescent under the age of 25 years (Inhestern et al., 2021). A diagnosis of parental cancer, even not terminal, can have a significant and adverse impact on adolescent mental health, development and the parent-child relationship (Inhestern et al., 2021, Walczak et al., 2018). Potentially leading to experiencing higher levels of anxiety, depression and suicidal ideation compared to their peers (Kim et al., 2022; Hauken et al., 2018). Howell et al. (2016) compared youth experiencing parental cancer with those experiencing parental death and identified that while adolescents experiencing parental cancer showed lower levels of posttraumatic stress disorder, but both groups exhibited similar levels of depression and anxiety. The study also identified that parental reinforcement and supportive caregiver communication where inversely associated with posttraumatic stress disorder. Evidence, however is mixed on this topic as some studies have also reported positive outcomes such as increased prosocial behaviour, better social ability and post-traumatic growth (Sieh, et al., 2010; Su & Ryan-Wenger, 2007). This study will provide more in-depth evidence to consider if perceptions of death and loss may have a differential impact on the experience adolescents have following a diagnosis of maternal cancer. Previous research by Jessop et al. (2022) for example have found that fear experienced by adolescents may be due to pre-existing beliefs about illnesses such as cancer, associations of cancer with death, or due to receiving a lack of age-appropriate and suitable information about their parents' illness during the diagnosis and initial treatment phase. The definition of adolescence is also varied, particularly when determining the specific age boundaries that encompass this group, which can be a challenge for search to enable the comparison of findings across this age group. UNICEF (2022) defined adolescence between 10 and 19 years of age, as a “ transition period between childhood and adulthood with significant growth and development ” and have also acknowledged that the needs and vulnerabilities of adolescents are distinct and different from those of children, which often means these remain unaddressed (UNICEF, 2022). Patton et al. (2016) provides a more comprehensive definition of adolescence between 10 and 24 years, considering other developmental tasks as key experiences of this developmental stage such as the development of adult roles and responsibilities (e.g., development of relationships, identity formation and employment). Specifically for adolescents, parental cancer can have a contradicting effect on this group’s developmental needs for separation from their families (Visser et al., 2004) and identity development, while still having a need for security and stability (Rodriguez et al, 2018; Rodriguez, 2020; Morris et al., 2016; Finch & Gibson, 2009) and a stable connection with a parental figure (Davey et al., 2005). At the time of maternal illness, parental figures may not be able to meet adolescent’s complex needs (Rodriguez, 2020) due to the illness demands and treatment. There is often a lack of clarity as well about the definition of terminology such as grief, loss and bereavement (Duncan, 2020 & McLaughlin et al., 2019). These are interrelated, yet distinct terms which are recognised in contexts where death does not occur (Shear et al., 2013; Martins et al., 2024). While adolescents who experience a non-terminal cancer diagnosis in a parent do not go through bereavement, the diagnosis still incites grief, loss and fear of parental death (Almulla & Lewis, 2020). Bereavement is associated with sadness and loss following death, whereas loss consists of being deprived of something or someone that is perceived as necessary, significant or loved (Murray, 2003). Grief is a mental, emotional and behavioural response to loss (Martins et al., 2024). Loss can be associated to death but could involve loss of purpose and meaning (Murray, 2023). The impact of loss depends on several factors such as age, personality emotional needs, value systems and social circumstances (Abi-Hashem, 1999). Loss can be linked to many different contexts such as the loss of a cherished place, a romantic relationship, a house, a pet, a mental faculty, a health condition, retiring from a job, loss of social status, among many other (Abi-Hashem, 1999). When there is a meaningful attachment, there will be a deep sense of loss (Abi-Hashem, 1999). Research has identified that child and adolescent grief is different to adult grief. Grief is not a linear process which may involve periods of regression or interruption, as well as periods of rekindling in different ways at different stages in child and adolescent development (Revet et al., 2020). This can lead to a heightened risk of experiencing psychological disorders and functional impairment (Boelen et al., 2019; Duncan, 2020). Children’s bereavement is determined by many factors such as social supports, attachment, social upbring, cognitive abilities and previous experiences (Bowly 1980; Santos et al., 2021). The experiences of loss associated with parental cancer have been less researched and therefore poorly understood. While our understanding of grief has advanced from an individual process to a complex response within interpersonal, social, and cultural contexts (Guldin & Leget , 2024; Silverman et al., 2021), studies on disenfranchised grief, ambiguous loss and non-death losses challenge typical definitions of grief (Guldin & Leget , 2024; Doka, 2023). Therefore, it is a considerable limitation to our understanding of grief when research is primarily centred on the death of a loved one as we fail to recognise the universality of experiencing loss and many forms of grief are not observed or are neglected. This is relevant to the current paper exploring experiences of loss in adolescents associated with parental non- terminal cancer. Grief theories There are several theories of grief which have provided systematic ways of understanding and explaining grief. A classical and widely used model is the Kubler- Ross Stage Model of Grief, which is popular and frequently accepted (Alvis, Stoebe & Schut, 2021). The model has been widely criticised as well, as people who do not follow these stages chronologically, may feel they are not grieving in the correct way (Alvis, Stoebe & Schut, 2021) and that there is a “correct” or “typical” way to grieve. Despite the criticism, the stage type qualities of the model made it appropriate for underpinning a deductive thematic analysis. The Kubler- Ross Stage Model of Grief consists of different stages that occur consecutively, moving from the stage into the next, however not in a linear way. The five stages are: denial, anger, bargaining, depression and acceptance. (1) Denial is the first stage of grief and is a natural response that may help buffer the immediate shock of the situation and help process the loss at their own pace. Feelings of numbness can give them time to consider the changes they’re going through (Silva, 2024). Denial and shock make survival possible by pacing feelings and allowing people to deal with how much they can handle at a given time (Kubler Ross & Kessler, 1969). (2) Anger is described as a necessary stage in the healing process. Feeling the anger can help it dissipate and lead to healing, instead of supressing it. (3) Bargaining can happen before and/or after death. It includes wondering “what if” or “if only”, trying to do anything to stop feeling the loss and the person remains in the past. (4) Depression occurs in the present and is a normal and appropriate response to deep feelings of bereavement. (5) Acceptance does not equal to feeling ok or all right with the loss of a loved one. It means accepting that the person is physically gone and is not coming back. This is the new and permanent reality, which means the past cannot remain intact and requires readjustments. Very relevant to the loss and grief in adolescents experiencing parental non terminal cancer, Kubler Ross’ model was adapted and applied to understand experience of loss no related with death. Stroebe et al. (2017) described the same five emotional states as denial (i.e., rejecting the new reality or loss), anger (i.e., frustration towards self or others about the loss), bargaining (i.e., believing that loss may be resolved in exchange for something else), depression (i.e., intense sadness, fatigue and withdrawal following the loss), and acceptance (i.e., acknowledging and making peace with the loss). This model received the same criticism as the model does not propose that all five stages must be experienced or experienced in order for grief to be fulfilled, however, the model has been criticised for its apparent oversimplification of the grieving process and insinuation that loss can and should be overcome (Stroebe et al., 2017). Limited research has explored the specific psychosocial and coping needs of adolescents dealing with nonterminal parental cancer and it is unclear how their understanding and unique experiences of death and loss may influence these factors (Mroz et al., 2024). Despite facing increased vulnerability to developing psychological and emotional difficulties, research suggests that adolescents’ needs may be missed by healthcare professional due to reduced visibility in clinical settings. This may be due, in part, to parents wishing to protect them from potentially distressing hospital experiences (Alexander et al., 2023). Identifying themes of perceptions and experiences within this population may highlight potential risk and protective factors, enabling more effective intervention to be provided at an earlier stage. Further research is therefore necessary in order to better understand this topic, inform clinical practice, and support the design and development of effective resources and treatments for adolescents dealing with nonterminal parental cancer (Soby et al., 2023). The aim of this study is, therefore, to explore the perceptions and experiences of death and loss in adolescents dealing with nonterminal maternal cancer. Materials and methods The study is a qualitative secondary data analysis on 15 adolescent interview transcripts that are part of a larger study: “Understanding adolescent adjustment to maternal cancer: A study of personal experiences and Psychosocial factors that promote adjustment” (Rodriguez, 2016). The original study and this secondary data analysis were approved twice by the original author’s institutional Research Ethics Committee and also the secondary data analysis was submitted to the author’s current institution. Adolescents in the original study completed online or in person interviews that were then transcribed, anonymised and analysed. Participants were Irish between 14 and 20 years of age, both males and females. Their mothers were diagnosed from cancer between 10 and 29 months previous to their interview. The sociodemographic characteristics of participants are included in Table 1. Informed consent was obtained from all participants prior to the interview. Table 1 Participant demographics Interview number Pseudonym Interview format Gender Age Time since diagnosis (months) Interview length (minutes) 1 Shiloh Face to face Female 17 18 31:08 2 Ryan Face to face Male 18 23 24:37 3 Connor Face to face Male 16 10 18:05 4 Evan Telephone Male 18 12 13:32 5 Ella Face to face Female 18 24 47:16 6 Naomi Face to face Female 17 14 29:24 7 Ethan Face to face Male 15 18 19:35 8 Derek Face to face Male 14 10 13:03 9 Sophia Face to face Female 16 10 29:00 10 Claire Telephone Female 16 24 19:47 11 Barbra Face to face Female 20 25 34:21 12 Caroline Face to face Female 19 14 56:18 13 Elaine Face to face Female 17 11 22:36 14 Fiona Skype Female 17 24 40:53 15 Anne Face to face Female 17 29 28:30 Secondary data analysis is suitable when data previously collected can be used to answer a different research question to the one it was originally collected for, such as experiences of grief and loss associated with parental non-terminal cancer (Coyer and Gallo, 2005; Largan and Morris, 2019). Although secondary data analysis is limited to the span of questions posed during the original data collection, this approach facilitates the repurposing of existing data, thereby maximizing its utility, avoiding needless duplication of data collection, and enhancing research efficiency (Wickham, 2019). A deductive secondary data analysis was conducted on the interview transcripts using NVivo 12 software. Specifically, thematic analysis was conducted. This method was deemed suitable as it is used to identify, analyse, and report patterns in data and reveal core consistencies and meanings which can be used for interpretation (Braun & Clarke, 2006). Thematic Analysis consists of six stages that were followed in this analysis (Figure 1). Familiarizing yourself with the data. Repeatedly reading adolescent interviews to identify meanings and patterns related to the theme of adolescent age and development. Generating initial codes. Coding was driven by the research objective, which was to identify the perceptions of death and loss in adolescents experiencing non-terminal maternal cancer. Searching for themes. Initial codes were sorted into potential themes. The relationship between codes was evaluated to determine how these could be grouped. Reviewing themes. This phase involved a refinement and further validation of the themes, ensuring that codes identified fit appropriately with themes identified. Naming the themes. An overarching theme was selected, as it reflected the themes identified in adolescent interviews that were focused on grief and loss. Subthemes were also identified and named. Producing the report. An argument was built around findings on the perception of grief and loss of adolescent who experience non terminal parental cancer. Transcripts were reviewed separately by both researchers using NVivo 14 software to encourage familiarity with the data and generate initial codes. Initial codes were then combined and compared to establish intercoder reliability and consistency (Braun & Clarke, 2006; O’Connor & Joffe, 2020). Once appropriate coding was agreed, codes were categorised to determine potential major and minor themes which were then reviewed and refined, allowing for definitions and names to be generated. Final themes were explored for further analysis and reported. Results Theme 1: Cancer and death: Life would never be the same. Maternal cancer is a significant change in adolescent’s lives, to the extent that they lost the perception of their lives as they knew it before. Adolescents were not expecting cancer to come to their lives and had limited experience of the illness and misconceptions about it before this time. Therefore, making sense of cancer was a shared and challenging experience that changed their everyday lives. Adolescents recalled how they found out about their mother’s diagnosis, reflecting on their initial understanding of cancer as the threat it posed to their mother’s survival. “ I wanted to hear all of the details [...] like is this operable? you know, what is her chance of surviving going to be? ” (Caroline). 1.1. Getting to know cancer One of the changes brought about to adolescent’s lives was the need to learn about cancer. Some adolescents had previous experiences with cancer before maternal diagnosis, however they did not understand it or had to learn about it before in the same level of detail: “I didn't know as much detail about it until it came to my house" (Anne). Cancer also introduced feelings of anxiety and uncertainty in adolescents regarding their mother’s prognosis and how confident they felt about the illness and the future: I was kind of like ‘was she better now?’ because she had the chemo and the radiation but no ... like I realized that she was still sick […] my head was all over the place and I didn’t really understand why she had to have the surgery (Anne). 1.2. Facing perceptions and conflicting misconceptions A cancer maternal diagnosis questioned adolescent’s beliefs and was conflicting and difficult as adolescents generally had a negative perception of cancer previously " I didn't think there was enough positive, like enough people who have had it and gotten past it. I didn't think that was highlighted enough " (Shiloh). Many were faced with a wider misconception that death is an inevitable outcome of cancer, sharing that “ people see cancer like a terminal illness ” (Shiloh). “ When I hear that word …cancer I just think ‘dead’ ” (Anne). This belief was echoed in some adolescents’ recollections of learning about their mother’s cancer while others linked this association to past encounters with cancer: " a girl in my class had it and she died [...] I think we were 11 " (Claire). “ Whenever I thought about cancer before or ever imagined my mum... I just thought it was just the end of the world, and it would just be like the end ” (Naomi). Although these experiences did not always lead to a terminal prognosis, the notion of having cancer at a young age conflicted with adolescents’ views that life-threatening illness typically occurs in older people. “ My granddad is old so it wasn’t like a big thing […] but mum was only...she was 45 or something when she got her cancer which is young enough ” (Barbara). Maternal cancer also questioned adolescents’ perception of the nature of life and its fragility. Adolescents recalled taking for granted that their mother would always be present in their lives, believing they were “ invincibl e” before their diagnosis (Shiloh). Cancer brought new perspectives about the fragile nature of life, notably that “ something like cancer can happen at any time and just take your loved ones away from you ” (Caroline). Some reflected on the possibility that this could return in the future, creating doubt about their mother’s likelihood of long-term survival. “ You rarely hear people fighting it twice, it usually comes back and it is game over […] She is old, she is 63 now, so that...I know in my heart that that would be it” (Ella). Theme 2: The emotional challenges of maternal diagnosis A significant challenge introduced by maternal cancer to adolescents was a variety of emotions that were new and challenging to cope with. This theme is focused on adolescents’ experiences of how they navigated maternal cancer, highlighting variation in the cognitive and emotional responses experienced amongst the group. Most recalled disbelief and shock and, for some, this led to a realisation that no one is immune from experiencing cancer “ I used to always say ‘obviously that won’t happen to me’ but when you get older you realize it can” (Naomi). 2.1 Changed thoughts and emotions Maternal cancer changed adolescents’ thoughts and emotions, testing their coping skills in new ways. Adolescents reflected on the coping strategies they found most useful to help manage the uncertainty and distress of maternal cancer such as avoiding negative thinking and talking to others about what they were experiencing. Some had family and friends to talk to, others described recurring to professionals, which provided them with an opportunity to share and make sense of the experience. This, however was not the case for all of them. Some adolescents lacked a reflective space and shared they had to “ stay strong ” and “ cope ” for the sake of their mother (Caroline). Some even questioned if they were worthy of this support: “I called my mum once and she gave me the number of a counsellor but I didn’t call him […] I really didn’t feel like I deserved help ” (Ella). Loss was experienced in relation to their capacity to manage their thoughts and emotions. Some adolescents internalised their fears, describing a loss of control over worries and catastrophic thinking about their mother’s health: “you could be constantly worrying and […] over analysing ” (Shiloh). Avoidance was also used as a coping mechanism for their grief with some participants not wanting to speak about what happened at all. “I didn’t want to talk about for so long because once I said it out loud it was really, it was real, and I just didn’t want that to be the case at all ” (Shiloh). Thoughts and emotions could also be intrusive, further supporting adolescents’ perceived lack of control over their emotions: “Every now and again you just kind of have these moments where you are just sitting there and it just hits you all of a sudden as bad as it did when you first found out” (Shiloh). Participants spoke about struggling to cope with their mother’s diagnosis and feeling unable to accept when she had gone into recovery. “ I am never going to feel that it just went away because it’s just consistently at the back of my mind all the time ” (Shiloh). “ I think they said there is still something there but is completely benign. Even that makes like an alarm go off in my head … ‘it’s going to go wrong it’s going to go wrong’ . (Ella). Navigating the experience of maternal cancer was tough for many of the adolescents and sometimes resulted in anger and frustration building. One adolescent spoke of having “ bad days, emotionally ” and becoming “ annoyed at very silly things ”, suggesting that these could trigger conflict in the family (Anne). This led them to “ distance ” themselves in their bedroom when this happened, while others sheltered in their room due to the negative effect that maternal cancer had on their mood, describing periods of depression. “I just felt like everything was going wrong and this is not how it is supposed to be […] that everything was going to shit basically. I just sat in my room and cried for about three days and didn’t want to move, didn’t wash, didn’t really eat much ...” (Ella). 2.2 Experiencing and living with fear Another loss of adolescent lives as they knew it before maternal diagnosis was having and coping with new fears. After processing the initial shock of the diagnosis, some were worried about aspects of treatment such as surgery “ in case anything went wrong ” suggesting that the fear of physically losing their mother remained regardless of their nonterminal prognosis (Derek). The emotional toll that illness had on their mother was also touched upon, with one adolescent describing how helpless they felt in response to their mother’s poor emotional and physical health: “ It seemed like she was really suffering […] I felt very helpless, like there was nothing I could do ” (Caroline). Most felt they were able to work through negative emotions and develop a sense of acceptance. This helped them feel more positive about their mother’s diagnosis and, for one adolescent, challenged their initial fear that maternal cancer would have a catastrophic end. “It was less scary once it was so close, because whenever I thought about cancer before or ever imagined my mum or […] anyone close to me having it... I just thought it was just the end of the world and it would just be like the end ... but when I got to know more about it […] I was more accepting of it and I understood it more so I realized she was going to get better” (Naomi). Maternal cancer also changed adolescents’ thoughts and experiences long term. Adolescents feared they could get the illness themselves and became hypervigilant about their own health and bodies. One adolescent spoke about being on “ high alert ” for cancerous ailments, recalling how this hypervigilance impacted their ability to cope. “ If I feel a lump anywhere I am like ‘Oh my God, it’s cancer, mum! Take me to the doctor ’” (Barbara). Theme 3: Systemic change in adolescents’’ lives This theme described change and loss in different areas of adolescents lives for example change in family dynamics, their priorities and everyday lives and responsibilities. Most adolescents focused on the extent to which roles within their household changed while their mother received medical treatment away from the family home. This enabled adolescents to learn about empathy and value everything their mother did for them before getting ill, which they did not value as much before: "It’s only when they are sick that you realize how much they actually do for you and now is your turn to step into their shoes, if you like, and do as much as you can for them " (Anne). 3.1 Understanding the impact of cancer on family dynamics Maternal cancer changed adolescents’ normal lives and routines and they experienced this a loss. Some adolescents relied on extended family members to support with everyday tasks such as cooking and cleaning if their parents were busy at the hospital. However, their mother’s absence was still felt. “It was a different routine, it felt different like specially when my mum was in hospital […] it was more quiet ” (Derek). Change was also experience in adolescents’ relationship with their mothers. For some, this relationship had improved in the aftermath of the diagnosis: “we were talking to each other every day […] it really brought us closer together" (Barbara). However, cancer could negatively impact their relationship too. One adolescent described how supporting their mother led to parentification, in which they were tasked with prioritising their mother’s needs, leaving little space for them to receive maternal support. “I felt like I was the one kind of caring for her, I was the one making her feel better” (Caroline). 3.2 Perceived priorities and responsibilities Not all adolescents experienced drastic changes in their lives or adopted caregiver duties while their mother was ill; some adolescents felt that life generally “ stayed the same ” and while they had always helped out with chores, no additional expectations were placed upon them (Naomi). Those who did take on more responsibilities explained how maternal cancer prompted them to reconsider their values. “ I just kind of ‘right, set my priorities now’. I was studying for like Christmas exams I said I didn’t matter so much. I tried to look after mum " (Ryan). This, however, was also a loss of what was important to them and forced them into changing these priorities. Loss associated to this extra helping role was perceived differentially for adolescents. Many were willing to help with everyday tasks such as cleaning or cooking for their mother’s sake: “ I just wanted to do anything I could to relieve some of the distress my mum was going through ” (Shiloh). However, for others, taking on additional responsibilities was perceived as a loss as it was not a choice but an obligation. “ When she was in hospital my dad would be with her, so she depended on me to mind my little brother a good bit ” (Elaine). Theme 4: Symbolic losses of maternal cancer This theme is focused in describing further experiences of loss associated with loss, even though maternal cancer was not terminal, adolescents did experience loss in several areas of their life. Adolescents tried to do the usual things they would usually do, such as spend time with friends, but this was not experienced in the same way as before: " I still went to school, I still did my homework, I still had lunch with my friends […] it was still normal like ... then at the back of my mind mum is still sick ” (Anne). 4.1 Loss of sense of control and privacy Understanding cancer and remaining informed of their mother’s treatment was helpful for some adolescents, providing some sense of control. However, adolescents were aware that there was nothing they could do to overpower their mother’s illness . “You are not in control of your parent’s cancer […] all you can do is try to look after your own wellbeing and have your parent know that you care about them and you are there for them ” (Caroline). Adolescents also lost their privacy and sometimes had no choice in who and how they wanted to share their maternal cancer experience. Some adolescents avoided telling friends and teachers about their mother’s illness for fear of being treated differently while others were unable to maintain their privacy, especially if their mother had already spoken to the local community about her illness. One adolescent reported that their “ neighbourhood knows everything ”, adding that “e ven the Vice Principal’s wife would have driven mum [for treatment] one day " (Elaine). This loss of privacy was particularly challenging for those who desired normality as a way of a coping. “ I just wanted to be left alone […] I didn’t want anyone treating me like I was a baby, I could deal with it myself" (Ethan). 4.2 The impact of maternal cancer on educational experiences Loss was significantly experience by adolescents with regards to their education and it was one of the areas most impacted by the diagnosis, therefore it was included as a subtheme of its own. All adolescents were attending school or college at the time of their mother’s diagnosis. Some felt their education was unaffected by their mother’s illness, with one adolescent crediting this to their ability to continue “normally”: "I just kind of put my head down and started working again” (Ryan). However, others struggled with this very much and experienced significant change and loss in this area. When one adolescent requested to postpone their studies was denied by their School, their attendance was impacted by their desire to be closer to home with their mother and driving her mum to treatments. " I had already been to the college and asked if I could defer and they said I wasn’t allowed […] I really wasn’t going to college, if I am honest. I just didn’t have it" (Barbara). This resulted in Barbara losing her first year of college and feeling very unsupported. Similarly, some of the adolescent’s educational experience was impaired by their coping response to maternal cancer, resulting in further loss of education for those who struggled from low mood. “ I didn’t leave my room for about three days, I wasn’t going to class so that made me feel even worse cause I was falling behind with school ” (Ella). 4.3 Life was changed forever Change and loss was significantly associated with their mothers in many aspects such as their relationship, their strength and their physical appearance. Adolescents described the impact of loss associated with their mothers’ usual looks as their hairstyle and colour: “ it was just kind of strange to see it go […] I didn’t really like seeing her with no hair” (Naomi). While many of the changes induced by treatment were temporary, some mothers required invasive procedures such as a mastectomy which resulted in permanent physical change. These experiences shaped the way they were perceived by their adolescents. “I’ve never seen her that sick before [...] I just don’t like her being so upset or defeated in any way ” (Barbara) Loss was also experienced in adolescents’ childhood and maturity. Some adolescents were as young as nine years old when they first learnt about their mother’s illness, recalling how they “ grew up very fast ” and comparing their childhood to those of their peers: “ looking after my brother […] in my school there wouldn’t have been many do that ” (Elaine). One expressed a desire to “ be a kid for longer, just to be with my parents more ” suggesting that, with the loss of their childhood, their relationship with their parents had changed (Ella). This was reinforced by another adolescent who recalled being praised by their father for their maturity: “ he was treating me like I could comprehend, as if I was an adult” (Caroline). With this shift from innocence to maturity, both the parent and adolescent perceived each other differently and experienced a loss in their roles which significantly impacted their relationship: “When she was at her very vulnerable stage I think it felt like the mother child relationships had reversed... I felt like I was the one kind of caring for her, I was the one making her feel better, she was the one crying onto my shoulder like metaphorically speaking, you know, I was the one there to make her feel better she was coming to me with concerns...and I felt that she was the vulnerable one...and it wasn’t so much that she became me, it was more that she became a young child, a very vulnerable young child...scared vulnerable child...and I just had to all of a sudden deal with this...I suppose make her not feel so scared, I had to comfort her at times....I felt like in a normal situation you’d be aware of the relationship with a person, you’d know the dynamic of it, I felt all of a sudden because everything had just been completely uprooted and reversed that my mother wasn’t really sure, she wasn’t sure of herself so she just saw me as another family member.. she didn’t see me as her daughter… I definitely feel that the lines between mother and daughter were blurred” (Caroline) Discussion The overarching aim of this study was to explore the perceptions and experiences of death and loss in adolescents dealing with nonterminal maternal cancer. Through a secondary thematic analysis, adolescents were found to consider these experiences across four main themes. Life would never be the same describes how cancer was associated with death and adolescents were challenged with their own perceptions. The emotional challenges of maternal diagnosis is the second theme which described how a cancer diagnosis changed adolescents thoughts and emotions and introduced new emotions such as fear and uncertainty which was challenging to cope with. Theme three is focused on the Systemic change in adolescents lives which describes the loss of previous family dynamics, priorities, roles and responsibilities. Theme our describes the symbolic loss of maternal cancer, even though maternal cancer was not terminal, cancer still led to significant loss in adolescents’ lives, specifically in their sense of control and their privacy as with their education. Maternal cancer affected adolescents lives and relationships in such a way that life was changed forever as a result. Adolescents in this study, similar to previous research were challenged by their own beliefs and previous experiences of cancer. Cancer was associated with death, even though a diagnosis was presented as nonterminal and this led to other emotions such as uncertainty and significant fear. This is similar to previous research by Jessop et al. (2022) fear experienced by adolescents could be due to pre-existing beliefs about cancer and death. The study identified that adolescent with experience of non-terminal parental cancer also go through profound change and loss, whether it be by postponing key life events such as higher education or through loss of daily routines. Some adolescents in this study experienced changes in family dynamics following a parental cancer diagnosis, often taking on caregiver duties for their ill parent such as caring for younger siblings or offering emotional support, while others perceive minimal change to the parental relationship, therefore loss of parental care may also present (Rodriguez et al., 2018; Rodriguez & Dolan, 2019). Adolescents in this study, as reported by previous research were also restricted in engaging in social activities and relationships due to additional responsibilities and taking on caregiving roles, therefore further impacting upon psychosocial development with limited or lost opportunities for development of social connections (Mroz et al., 2024; Pedersen & Revenson, 2005) which challenged their own developmental stage. Many of the adolescents in this study recalled experiencing multiple brief or ongoing symptoms of grief such as shock and denial, anger and frustration, low mood and helplessness, and acceptance (Kubler Ross & Kessler, 1969; Stroebe et al., 2017). This finding reinforces the notion that (1) grief is a unique experience which may present differently in each adolescent facing parental illness and (2) grief can occur in absence of a physical death. These findings therefore align better with the concepts of ambiguous loss and disenfranchised grief, highlighting potential for non-death related loss to be disregarded as unworthy of mourning and spurring the development of unresolved grief. These findings suggest that adolescents’ experiences of maternal cancer tend to align with a different model of grief. For example, Tonkin’s (1996) proposal that grief continues to exist long after loss, coming and going from time to time, while life continues to grows around it, much like the yolk of a fried egg (Tonkin, 1996). This model normalizes experiences of grief as opposed to pathologizing anticipated emotional responses to loss, suggesting that individuals can continue to successfully grow and progress through life in tandem with their experiences of loss and grief. Even though adolescents in this study did not experience maternal death, change and loss associated with maternal cancer is significant and adolescents can struggle to cope with it. Adolescent in this group experienced both adaptive and maladaptive coping mechanisms. Of the maladaptive mechanisms, some adolescents indicated that they felt unworthy of support which may suggest a sense of guilt towards their ill mother regarding their feelings or distorted views about themselves and the need to cope independently but also a limitation in seeking support early or at all. These distorted patterns of thinking may further reinforce the view that their mothers’ needs should be prioritised over their own, as illustrated within third theme of this study’s analysis. Moreover, some of the adolescents reported engagement in maladaptive strategies indicative of health anxiety, reporting increasing hypervigilance about the health of themselves of their mothers, and reassurance seeking behaviours (Rask et al., 2023). This highlights the need to provide supports for adolescents experiencing maternal illness with a focus on loss and grief, associated or not to death. Maternal cancer is a life changing experience with profound and possibly long-term consequences. While research suggests that the extent of academic and social losses may vary depending on each adolescents’ unique circumstances and coping needs, the findings of this study raise further questions about the long-term effects of psychosocial deficits (Guzzo & Gobbi; 2021) experienced by adolescents as a result of maternal cancer. Adolescents in this study reported experiences which align with symbolic loss of their identity within the maternal relationship, whether that be their childhood (as a result of cancer forcing them to mature faster) or their identity as their mother’s child as opposed to their caregiver (due to role reversal and parentification. This finding adds to a growing body of research which highlights the potentially detrimental impact of caregiving duties on adolescents’ psychosocial development and sense of identity, and establishes evidence of this notion within adolescents dealing with parental cancer (Mroz et al., 2024). Overall, this study suggests that adolescents may benefit from labelling and finding meaning in the parental cancer experience, adjusting their beliefs and expectations about their parents’ health and longevity, exploring and reconstructing their identity in light of systemic changes triggered by parental cancer, and normalising the ambivalence of these experiences (Mendenhall & Boss, 2022). They may require support from family or even from professionals to achieve this meaning making and face emotional and cognitive challenges of a parental cancer diagnosis and the level of significant change and loss experienced as a result. One strength of this study is that it provides the perspectives of adolescents themselves of death and loss associated with parental cancer. This strength overcomes a criticism often found in the literature that experiences are explored through the views of other informants (Karlsson et al., 2013). This study, however, is a secondary data analysis which means the original data was not collected with the intention of responding to the research aim, and therefore some details about the experience may be limited by the scope of the original data collected. As another limitation of the findings is that the sample of adolescents included in this study belonged to a western population, which in no way undermines the validity and genuineness of their experience, but these experiences may not reflect the experience of all adolescents, particularly those in non-western contexts (Walczak et al., 2018). References Abi-Hashem, N. (1999). Grief, loss and bereavement: An overview. Journal of Psychology and Christianity, 18 (4), 309-329. Alexander, E. S., Halkett, G. K. B., Lawrence, B. J., O'Connor, M. (2023). A Conceptual Model Depicting How Children Are Affected by Parental Cancer: A Constructivist Grounded Theory Approach. Children (Basel), 10 (9), 1-19. https://doi.org/10.3390/children10091507 Almulla, H. A. & Lewis, F. M. (2020). Losing Her: Children’s Reported Concern in the First 6 Months of Their Mother’s Breast Cancer Diagnosis. Cancer Nursing, 43 (6), 514-520. https://doi.org/10.1097/NCC.0000000000000763 Alvis K., Stroebe M. & Schut H. (2021) Stages of grief portrayed on the internet: A systematic analysis and critical appraisal. Front.Psychol, 12 : 772696. doi: 10.3389/fpsyg.2021.772696 Boelen, P. A., Eisma, M. C., de Keijser, J., & Lenferink, L. I. M. (2022). Traumatic stress, depression, and non-bereavement grief following non-fatal traffic accidents: Symptom patterns and correlates. PloS One , 17(2), e0264497. https://doi.org/10.1371/journal.pone.026449 Bowlby, J. (1980). Attachment and loss. Vol. III. Loss: Sadness and depression. Hogarth. Braun, V. & Clarke, V. (2006). Using thematic analysis in Psychology. Qualitative Research in Psychology , 3 (2), 77-101, https://doi.org/10.1191/1478088706qp063oa Coyer, S.M., Gallo, A.M., 2005. Secondary analysis of data . J. Pediatr. Health Care 19 (1), 60–63. https://doi.org/10.1016/j.pedhc.2004.10.003. Davey, M., Gulish, L., Askew, J., Godette, K., & Childs, N. (2005). Adolescents coping with mom's breast cancer: Developing family intervention programs . Journal of Marital and Family Therapy, 31(2), 247-258 Doka, K. J. (2023). Bereavement: A sociological perspective. In E. M. Steffen, E. Milman, R.A. Neimeyer (Eds.) The Handbook of Grief Therapies. (pp. 189–198). SAGE Duncan, D. A. (2020). Death and dying: A systematic review into approaches used to support bereaved children. Review of Education, 8 (2), 452-479. Finch, A., & Gibson, F. (2009). How do young people find out about their parent's cancer diagnosis: A phenomenological study. E uropean Journal of Oncology Nursing, 13(3), 213- 222. https://doi.org/10.1016/j.ejon.2009.03.010 Guldin, M. B., & Leget, C. (2024). The integrated process model of loss and grief-An interprofessional understanding. Death Studies , 48(7), 738-752. Guzzo, F. M., & Gobbi, G. (2023). Parental Death During Adolescence: A Review of the Literature. OMEGA - Journal of Death and Dying , 87 1223(4), 1207-1237. https://doi.org/10.1177/00302228211033661 Hauken, M A., Senneseth, M., Dyregrov, A. & Dyregrov, K. (2018). Anxiety and the Quality of Life of Children Living With Parental Cancer. Cancer Nursing, 41 (1), 19- 27. https://doi.org/10.1097/NCC.0000000000000467 Howell K., Barret-Becker E., Burnside A., Wamser-Nanney R., Layne C. & Kaplow J. (2016) Children facing parental cancer versus parental death: the buffering effects of positive parental and emotional expression. Journal of Child and Family Studies, 25 , 152-164. Inhestern, L., Bultmann, J. C., Johannsen, L. M., Beierlein, V., Moller, B., Romer, G., Koch, U., & Bergelt, C. (2021a). Estimates of Prevalence Rates of Cancer Patients with Children and Well-Being in Affected Children: A Systematic Review on Population Based Findings. F rontiers in psychiatry , 12, 765314. https://doi.org/10.3389/fpsyt.2021.765314 Jessop, M., Fischer, A., & Good, P. (2022). Impact of expected parental death on the health of adolescent and young adult children: A systematic review of the literature . Palliative Medicine, 36(6), 928-937. https://doi.org/10.1177/02692163221092618 Kim, K. H., Kim, M. S., Choi, S., Kim, S. M. & Park, S. M. (2022). Health behaviours and psychological burden of adolescents after parental cancer diagnosis. Scientific Reports , 12, 1-11.| https://doi.org/10.1038/s41598-022-25256-5 Kubler Ross, E. & Kessler D. (1969) On grief and grieving. New York: Sricbner. Largan, C., Morris, T., 2019. Qualitative Secondary Research A Step-by-step Guide . SAGE, London. Martins, H., Romeiro, J., Casaleiro, T., Vieira, M., & Caldeira, S. (2024). Insights on spirituality and bereavement: A systematic review of qualitative studies. Journal of Clinical Nursing, 33 (5), 1593-1603. McLaughlin, C., Lytje, M., & Holliday, C. (2019). Consequences of childhood bereavement in the context of the British school system. Faculty of Education, University of Cambridge. Mendenhall, T.J., Boss, P. (2022). Ambiguous Loss: Contemporary Applications and Theoretical Extensions. In: Adamsons, K., Few-Demo, A.L., Proulx, C., Roy, K. (eds) Sourcebook of Family Theories and Methodologies. Springer, Cham. https://doi.org/10.1007/978-3-030-92002-9_37 Morris, J. N., Martini, A., & Preen, D. (2016). The well-being of children impacted by a parent with cancer: an integrative review. Supportive Care in Cancer , 24, 3235-3251. Mroz, E. L., Kastrinos, A., Bacharz, K., Fisher, C. L. & Applebaum, A. J. (2024). “A little bit different now”: Impacts of caregiving for parent with cancer on psychosocial development in emerging and young adulthood. Death Studies , 1-12. https://doi.org/10.1080/07481187.2024.2309488 Murray, J. (2023). Grief and Loss. In N. Beel, C. Chinchen, T. Machin & C. du Plessis (Eds.), Common Client Issues in Counselling: An Australian Perspective. University of Southern Queensland. https://usq.pressbooks.pub/counselling/chapter/grief-and-loss/ O’Connor, C. & and Joffe, H. (2020). Intercoder Reliability in Qualitative Research: Debates and Practical Guidelines. International Journal of Qualitative Methods , 19, 1- 13. https://doi.org/10.1177/1609406919899220 Patton, G. C., Sawyer, S. M., Santelli, J. S., Ross, D. A., Afifi, R., Allen, N. B., Arora, M., Azzopardi, P., Baldwin, W., Bonell, C., Kakuma, R., Kennedy, E., Mahon, J., McGovern, T., Mokdad, A. H., Patel, V., Petroni, S., Reavley, N., Taiwo, K., Waldfogel, J., Wickremarathne, D., Barroso, C., Bhutta, Z., Fatusi, A. O., Mattoo, A., Diers, J., Fang, J., Ferguson, J., Ssewamala, F., Viner, R. M. (2016). Our future: a Lancet commission on adolescent health and wellbeing. Lancet. 387 (10036), 2423- 278. https://doi.org/10.1016/S0140-6736(16)00579-1 Pedersen, S., & Revenson, T. A. (2005). Parental illness, family functioning, and adolescent well-being: a family ecology framework to guide research . Journal of Family Psychology, 19(3), 404-409. https://doi.org/10.1037/0893-3200.19.3.404 Revet, A., Bui, E., Benvegnu, G., Suc, A., Mesquida, L., & Raynaud, J. P. (2020). Bereavement and reactions of grief among children and adolescents: Present data and perspectives. L'encephale, 46(5), 356-363. Rodriguez, L. (2016). Understanding adolescent adjustment to maternal cancer: a study of personal experiences and psychosocial factors that promote adjustment. Unpublished doctoral dissertation, A Doctorate thesis submitted for the Degree of PhD to the National University of Ireland Galway, Galway. https://aran.library.nuigalway.ie/handle/10379/5534 Rodriguez L., Groarke A., Dolan P. & MacNeela P. (2018) Adolescent adjustment to maternal cancer: an interpretative phenomenological analysis (IPA). Qualitative Research Journal , 18(4), 345-358. https://doi.org/10.1108/QRJ-D-17-00034 Rodriguez, L., & Dolan, P. (2019). “It’s your turn to step into their shoes” The role of empathy in adolescents experiencing maternal cancer. Qualitative Research Journal, 19 (3), 213-224. https://doi.org/10.1108/QRJ-D-18-00045 Rodríguez, L. (2020). An exploration of resilience in adolescents facing maternal cancer. Cancer Reports , 3(2), e1208. Santos, S., Sá, T., Aguiar, I., Cardoso, I., Correia, Z., & Correia, T. (2021). Case report: Parental loss and childhood grief during COVID-19 pandemic. Frontiers in Psychiatry, 12. https://doi.org/10.3389/fpsyt.2021.626940 Shear, M. K., Ghesquiere, A., & Glickman, K. (2013). Bereavement and complicated grief. Current Psychiatry Reports , 15(11), 406-413 Sieh, D. S., Meijer, A. M., Oort, F. J., Visser-Meily, J. M. A., & Van der Leij, D. A. V. (2010). Problem behavior in children of chronically ill parents: a meta-analysis. Clinical Child and Family Psychology Review, 13 , 384-397. Silva, S. (2024). The Five Stages of Grief: Understanding the Mourning Process. Silverman, G. S., Baroiller, A., & Hemer, S. R. (2021). Culture and grief: Ethnographic perspectives on ritual, relationships and remembering. Death Studies , 45(1), 1–8. https://doi.org/10.1080/07481187.2020.1851885 Soby, A. K.. H., Moos, C. M., Andersen, A. H., Ravn, S. L., Andersen, C. M. & Roessler, K. K. (2023). Adolescents’ needs for information and psychosocial support during their mother’s breast cancer trajectory: A systematic review. Psycho-Oncology , 32 (8), 1163-1172. https://doi.org/10.1002/pon.6172 Stroebe, M., Schut, H., & Boerner, K. (2017). Cautioning health-care professionals: Bereaved persons are misguided through the stages of grief. OMEGA - Journal of Death and Dying, 74(4), 455–473. https://doi.org/10.1177/0030222817691870 Su, Y. H., & Ryan-Wenger, N. A. (2007). Children's adjustment to parental cancer: a theoretical model development. Cancer Nursing, 30(5), 362-381. Tonkin, L. (1996). Growing around grief—another way of looking at grief and recovery. Bereavement Care, 15 (1), 10–10. https://doi.org/10.1080/02682629608657376 UNICEF (2022). UNICEF –Adolescents. (Online) Available at: https://data.unicef.org/topic/adolescents/overview/ Visser, A., Huizinga, G. A., van der Graaf, W. T., Hoekstra, H. J., & Hoekstra-Weebers, J. E. (2004). The impact of parental cancer on children and the family: a review of the literature. Cancer Treatment Reviews, 30(8), 683-694. Walczak, A., McDonald, F., Patterson, P., Dobinson, K., & Allison, K. (2018). How does parental cancer affect adolescent and young adult offspring? A systematic review. International Journal of Nursing Studies , 77, 54–80. https://doi.org/10.1016/j.ijnurstu.2017.08.017 Wickham R. (2019) Secondary analysis research. Journal of the Advanced Practitioner in Oncology, 1 (10), 395-400. https://doi.org/10.6004/jadpro.2019.10.4.7 Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6441123","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":575164382,"identity":"5886caf1-7973-48d6-8c12-57b0eceb1d10","order_by":0,"name":"Leonor Rodriguez","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABAklEQVRIiWNgGAWjYBACPgQzgeEAiOJnYDAA8yVwaGHD0CLZQIoWMDA4QEgLe/OxBx/3MOTzs+c+PPi1zcbe+HjzBoYfNQyJMxtwaOE5lm444xmD5cye5waHZdvSmM3OHCtg7DnGkDgbly0SOWbSPEC3GNxIYzgs2XaYzexGjgEDbwND4jxcWuTfoGj5z2M8/40B4198WiR4EFoOfmw7IGEgwWPADLIFp8N40tIkZwAVSvY8YzjMcC7ZQOJMWsFhmWMSxri8z89++JjEhwM2Bvzsacwff5TZ2fO3H9748E2NjeyMAzisgQBIHDDzQLkHcMcKGmD8QZy6UTAKRsEoGGEAAOtQU+6UaBO0AAAAAElFTkSuQmCC","orcid":"","institution":"University of Edinburgh","correspondingAuthor":true,"prefix":"","firstName":"Leonor","middleName":"","lastName":"Rodriguez","suffix":""},{"id":575164383,"identity":"016a9108-cb5a-4654-8bf9-925601271145","order_by":1,"name":"Chloe Fyfe","email":"","orcid":"","institution":"University of Edinburgh","correspondingAuthor":false,"prefix":"","firstName":"Chloe","middleName":"","lastName":"Fyfe","suffix":""},{"id":575164384,"identity":"ff783f0a-29b7-4bc3-ba17-f89eae68c477","order_by":2,"name":"Ashley Wright","email":"","orcid":"","institution":"University of Edinburgh","correspondingAuthor":false,"prefix":"","firstName":"Ashley","middleName":"","lastName":"Wright","suffix":""}],"badges":[],"createdAt":"2025-04-13 21:08:14","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6441123/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6441123/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":100510417,"identity":"ce7c2dd1-85fe-4466-b542-8c2bfe102703","added_by":"auto","created_at":"2026-01-18 12:04:46","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":79624,"visible":true,"origin":"","legend":"\u003cp\u003eBraun and Clarke’s (2006) six phases of reflexive thematic analysis\u003c/p\u003e","description":"","filename":"1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-6441123/v1/baf129d87b3f5bcf3e047652.jpg"},{"id":100510418,"identity":"21d5208c-fd9c-4d0e-af55-68c61cf0f86a","added_by":"auto","created_at":"2026-01-18 12:04:47","extension":"jpg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":162935,"visible":true,"origin":"","legend":"\u003cp\u003eThemes (major) and subthemes (minor) identified in the analysis\u003c/p\u003e","description":"","filename":"2.jpg","url":"https://assets-eu.researchsquare.com/files/rs-6441123/v1/523a52b50c273313c5fbccb1.jpg"},{"id":100815030,"identity":"dac6906e-d661-4e92-a443-92ee40a29b1f","added_by":"auto","created_at":"2026-01-21 16:25:17","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":745886,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6441123/v1/86fd15b3-d417-4398-8655-12b570b1b717.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003ePerceptions of death and loss in adolescents experiencing non-terminal maternal cancer: A qualitative secondary data analysis\u003c/p\u003e","fulltext":[{"header":"Highlights","content":"\u003col\u003e\n \u003cli\u003eAdolescents experience the loss of family dynamics, priorities, roles and responsibilities.\u003c/li\u003e\n \u003cli\u003e\u0026nbsp;The symbolic loss of maternal cancer, shows how nonterminal cancer led to significant loss in adolescent sense of control, privacy and education.\u003c/li\u003e\n \u003cli\u003e\u0026nbsp;Maternal non-terminal cancer affected adolescents lives in a way that life was changed forever.\u003c/li\u003e\n \u003cli\u003eAdolescents experience significant loss even if maternal cancer is non-terminal. Supports are therefore fundamental.\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Introduction","content":"\u003cp\u003eIt has been estimated that between 14 and 25% of cancer patients have a child or adolescent under the age of 25 years (Inhestern et al., 2021). A diagnosis of parental cancer, even not terminal, can have a significant and adverse impact on adolescent mental health, development and the parent-child relationship (Inhestern\u0026nbsp;et al., 2021, Walczak et al., 2018). \u0026nbsp; Potentially leading to experiencing higher levels of anxiety, depression and suicidal ideation compared to their peers (Kim et al., 2022; Hauken et al., 2018). \u0026nbsp;Howell et al. (2016) compared youth experiencing parental cancer with those experiencing parental death and identified that while adolescents experiencing parental cancer showed lower levels of posttraumatic stress disorder, but both groups exhibited similar levels of depression and anxiety. The study also identified that parental reinforcement and supportive caregiver communication where inversely associated with posttraumatic stress disorder.\u003c/p\u003e\n\u003cp\u003eEvidence, however is mixed on this topic as some studies have also reported positive outcomes such as increased prosocial behaviour, better social ability and post-traumatic growth (Sieh, et al., 2010; Su \u0026amp; Ryan-Wenger, 2007). \u0026nbsp;This study will provide more in-depth evidence to consider if perceptions of death and loss may have a differential impact on the experience adolescents have following a diagnosis of maternal cancer. Previous research by Jessop et al. (2022) for example have found that fear experienced by adolescents may be due to pre-existing beliefs about illnesses such as cancer, associations of cancer with death, or due to receiving a lack of age-appropriate and suitable information about their parents' illness during the diagnosis and initial treatment phase.\u003c/p\u003e\n\u003cp\u003eThe definition of adolescence is also varied, particularly when determining the specific age boundaries that encompass this group, which can be a challenge for search to enable the comparison of findings across this age group. UNICEF (2022) defined adolescence between 10 and 19 years of age, as a “\u003cem\u003etransition period between childhood and adulthood with significant growth and development\u003c/em\u003e” and have also acknowledged that the needs and vulnerabilities of adolescents are distinct and different from those of children, which often means these remain unaddressed (UNICEF, 2022). \u0026nbsp; Patton et al. (2016) provides a more comprehensive definition of adolescence between 10 and 24 years, considering other developmental tasks as key experiences of this developmental stage such as the development of adult roles and responsibilities (e.g., development of relationships, identity formation and employment).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSpecifically for adolescents, parental cancer can have a contradicting effect on this group’s developmental needs for separation from their families (Visser et al., 2004) and identity development, while still having a need for security and stability (Rodriguez et al, 2018; Rodriguez, 2020; Morris et al., 2016; Finch \u0026amp; Gibson, 2009) and a stable connection with a parental figure (Davey et al., 2005). At the time of maternal illness, parental figures may not be able to meet adolescent’s complex needs (Rodriguez, 2020) due to the illness demands and treatment.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThere is often a lack of clarity as well about the definition of terminology such as grief, loss and bereavement (Duncan, 2020 \u0026amp; McLaughlin et al., 2019).\u0026nbsp;These are interrelated, yet distinct terms which are recognised in contexts where death does not occur\u0026nbsp;(Shear et al., 2013; Martins et al., 2024). While adolescents who experience a non-terminal cancer diagnosis in a parent do not go through bereavement, the diagnosis still incites grief, loss and fear of parental death (Almulla \u0026amp; Lewis, 2020). Bereavement is associated with sadness and loss following death, whereas loss consists of being deprived of something or someone that is perceived as necessary, significant or loved (Murray, 2003). Grief is a mental, emotional and behavioural response to loss (Martins et al., 2024). Loss can be associated to death but could involve loss of purpose and meaning (Murray, 2023). The impact of loss depends on several factors such as age, personality emotional needs, value systems and social circumstances (Abi-Hashem, 1999). Loss can be linked to many different contexts such as the loss of a cherished place, a romantic relationship, a house, a pet, a mental faculty, a health condition, retiring from a job, loss of social status, among many other (Abi-Hashem, 1999). When there is a meaningful attachment, there will be a deep sense of loss (Abi-Hashem, 1999).\u003c/p\u003e\n\u003cp\u003eResearch has identified that child and adolescent grief is different to adult grief. Grief is not a linear process which may involve periods of regression or interruption, as well as periods of rekindling in different ways at different stages in child and adolescent development (Revet et al., 2020). This can lead to a heightened risk of experiencing psychological disorders and functional impairment (Boelen et al., 2019; Duncan, 2020). Children’s bereavement is determined by many factors such as social supports, attachment, social upbring, cognitive abilities and previous experiences (Bowly 1980; Santos et al., 2021). The experiences of loss associated with parental cancer have been less researched and therefore poorly understood.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWhile our understanding of grief has advanced from an individual process to a complex response within interpersonal, social, and cultural contexts (Guldin \u0026amp; Leget , 2024; Silverman et al., 2021), studies on disenfranchised grief, ambiguous loss and non-death losses challenge typical definitions of grief (Guldin \u0026amp; Leget , 2024; Doka, 2023). Therefore, it is a considerable limitation to our understanding of grief when research is primarily centred on the death of a loved one as we fail to recognise the universality of experiencing loss and many forms of grief are not observed or are neglected. This is relevant to the current paper exploring experiences of loss in adolescents associated with parental non- terminal cancer.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eGrief theories\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThere are several theories of grief which have provided systematic ways of understanding and explaining grief. A classical and widely used model is the Kubler- Ross Stage Model of Grief, which is popular and frequently accepted (Alvis, Stoebe \u0026amp; Schut, 2021). \u0026nbsp;The model has been widely criticised as well, as people who do not follow these stages chronologically, may feel they are not grieving in the correct way (Alvis, Stoebe \u0026amp; Schut, 2021) and that there is a “correct” or “typical” way to grieve. Despite the criticism, the stage type qualities of the model made it appropriate for underpinning a deductive thematic analysis.\u003c/p\u003e\n\u003cp\u003eThe Kubler- Ross Stage Model of Grief consists of different stages that occur consecutively, moving from the stage into the next, however not in a linear way. \u0026nbsp;The five stages are: denial, anger, bargaining, depression and acceptance. (1) Denial is the first stage of grief and is a natural response that may help buffer the immediate shock of the situation and help process the loss at their own pace. Feelings of numbness can give them time to consider the changes they’re going through (Silva, 2024). Denial and shock make survival possible by pacing feelings and allowing people to deal with how much they can handle at a given time (Kubler Ross \u0026amp; Kessler, 1969). \u0026nbsp;(2) Anger is described as a necessary stage in the healing process. Feeling the anger can help it dissipate and lead to healing, instead of supressing it. (3) Bargaining can happen before and/or after death. It includes wondering “what if” or “if only”, trying to do anything to stop feeling the loss and the person remains in the past. \u0026nbsp;(4) Depression occurs in the present and is a normal and appropriate response to deep feelings of bereavement. \u0026nbsp;(5) Acceptance does not equal to feeling ok or all right with the loss of a loved one. It means accepting that the person is physically gone and is not coming back. This is the new and permanent reality, which means the past cannot remain intact and requires readjustments.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eVery relevant to the loss and grief in adolescents experiencing parental non terminal cancer, Kubler Ross’ model was adapted and applied to understand experience of loss no related with death. Stroebe et al. (2017) described the same five emotional states as denial (i.e., rejecting the new reality or loss), anger (i.e., frustration towards self or others about the loss), bargaining (i.e., believing that loss may be resolved in exchange for something else), depression (i.e., intense sadness, fatigue and withdrawal following the loss), and acceptance (i.e., acknowledging and making peace with the loss). \u0026nbsp;This model received the same criticism as the model does not propose that all five stages must be experienced or experienced in order for grief to be fulfilled, however, the model has been criticised for its apparent oversimplification of the grieving process and insinuation that loss can and should be overcome (Stroebe et al., 2017).\u003c/p\u003e\n\u003cp\u003eLimited research has explored the specific psychosocial and coping needs of adolescents dealing with nonterminal parental cancer and it is unclear how their understanding and unique experiences of death and loss may influence these factors (Mroz et al., 2024). Despite facing increased vulnerability to developing psychological and emotional difficulties, research suggests that adolescents’ needs may be missed by healthcare professional due to reduced visibility in clinical settings. This may be due, in part, to parents wishing to protect them from potentially distressing hospital experiences (Alexander et al., 2023). Identifying themes of perceptions and experiences within this population may highlight potential risk and protective factors, enabling more effective intervention to be provided at an earlier stage. Further research is therefore necessary in order to better understand this topic, inform clinical practice, and support the design and development of effective resources and treatments for adolescents dealing with nonterminal parental cancer (Soby et al., 2023). The aim of this study is, therefore, to explore the perceptions and experiences of death and loss in adolescents dealing with nonterminal maternal cancer.\u0026nbsp;\u003c/p\u003e"},{"header":"Materials and methods","content":"\u003cp\u003eThe study is a qualitative secondary data analysis on 15 adolescent interview transcripts that are part of a larger study:\u0026nbsp;\u0026ldquo;Understanding adolescent adjustment to maternal cancer: A study of personal experiences and Psychosocial factors that promote adjustment\u0026rdquo; (Rodriguez, 2016). The original study and this secondary data analysis were approved twice by the original author\u0026rsquo;s institutional Research Ethics Committee and also the secondary data analysis was submitted to the author\u0026rsquo;s current institution.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAdolescents in the original study completed online or in person interviews that were then transcribed, anonymised and analysed. Participants were Irish between 14 and 20 years of age, both males and females. Their mothers were diagnosed from cancer between 10 and 29 months previous to their interview. The sociodemographic characteristics of participants are included in Table 1. Informed consent was obtained from all participants prior to the interview.\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"99%\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"7\"\u003e\n \u003cp\u003e\u003cstrong\u003eTable 1\u003cbr\u003e\u003c/strong\u003e\u003cem\u003eParticipant demographics\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003eInterview\u003cbr\u003e\u0026nbsp;number\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003ePseudonym\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003eInterview\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eformat\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003eGender\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003eAge\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e\u003cstrong\u003eTime since diagnosis (months)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e\u003cstrong\u003eInterview length\u003cbr\u003e\u0026nbsp;(minutes)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eShiloh\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFace to face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e31:08\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eRyan\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFace to face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e23\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e24:37\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eConnor\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFace to face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e16\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e18:05\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eEvan\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eTelephone\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e13:32\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eElla\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFace to face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e24\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e47:16\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eNaomi\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFace to face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e29:24\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eEthan\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFace to face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e19:35\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eDerek\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFace to face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e13:03\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e9\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eSophia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFace to face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e16\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e29:00\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eClaire\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eTelephone\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e16\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e24\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e19:47\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e11\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eBarbra\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFace to face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e20\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e25\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e34:21\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eCaroline\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFace to face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e19\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e56:18\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eElaine\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFace to face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e11\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e22:36\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFiona\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eSkype\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e24\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e40:53\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eAnne\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFace to face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd\u003e\n \u003cp\u003e29\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\"\u003e\n \u003cp\u003e28:30\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003ctd\u003e\u003cbr\u003e\u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eSecondary data analysis is suitable when data previously collected can be used to answer a different research question to the one it was originally collected for, such as experiences of grief and loss associated with parental non-terminal cancer (Coyer and Gallo, 2005; Largan and Morris, 2019). \u0026nbsp;Although secondary data analysis is limited to the span of questions posed during the original data collection, this approach facilitates the repurposing of existing data, thereby maximizing its utility, avoiding needless duplication of data collection, and enhancing research efficiency (Wickham, 2019).\u003c/p\u003e\n\u003cp\u003eA deductive secondary data analysis was conducted on the interview transcripts using NVivo 12 software. Specifically, thematic analysis was conducted. This method was deemed suitable as it is used to identify, analyse, and report patterns in data and reveal core consistencies and meanings which can be used for interpretation (Braun \u0026amp; Clarke, 2006).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThematic Analysis consists of six stages that were followed in this analysis (Figure 1).\u0026nbsp;\u003c/p\u003e\n\u003col\u003e\n \u003cli\u003eFamiliarizing yourself with the data. Repeatedly reading adolescent interviews to identify meanings and patterns related to the theme of adolescent age and development.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eGenerating initial codes. Coding was driven by the research objective, which was to identify the perceptions of death and loss in adolescents experiencing non-terminal maternal cancer.\u003c/li\u003e\n \u003cli\u003eSearching for themes. Initial codes were sorted into potential themes. The relationship between codes was evaluated to determine how these could be grouped.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eReviewing themes. This phase involved a refinement and further validation of the themes, ensuring that codes identified fit appropriately with themes identified.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eNaming the themes. An overarching theme was selected, as it reflected the themes identified in adolescent interviews that were focused on grief and loss. Subthemes were also identified and named.\u003c/li\u003e\n \u003cli\u003e\u0026nbsp;Producing the report. An argument was built around findings on the perception of grief and loss of adolescent who experience non terminal parental cancer.\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eTranscripts were reviewed separately by both researchers using NVivo 14 software to encourage familiarity with the data and generate initial codes. Initial codes were then combined and compared to establish intercoder reliability and consistency (Braun \u0026amp; Clarke, 2006; O\u0026rsquo;Connor \u0026amp; Joffe, 2020). Once appropriate coding was agreed, codes were categorised to determine potential major and minor themes which were then reviewed and refined, allowing for definitions and names to be generated. Final themes were explored for further analysis and reported.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eTheme 1: Cancer and death: Life would never be the same.\u003c/p\u003e\n\u003cp\u003eMaternal cancer is a significant change in adolescent’s lives, to the extent that they lost the perception of their lives as they knew it before. \u0026nbsp;Adolescents were not expecting cancer to come to their lives \u0026nbsp;and had limited experience of the illness and misconceptions about it before this time. \u0026nbsp;Therefore, making sense of cancer was a shared and challenging experience that changed their everyday lives. Adolescents recalled how they found out about their mother’s diagnosis, reflecting on their initial understanding of cancer as the threat it posed to their mother’s survival. “\u003cem\u003eI wanted to hear all of the details [...] like is this operable? you know, what is her chance of surviving going to be?\u003c/em\u003e” (Caroline).\u003c/p\u003e\n\u003cp\u003e1.1.\u0026nbsp;Getting to know cancer\u003c/p\u003e\n\u003cp\u003eOne of the changes brought about to adolescent’s lives was the need to learn about cancer. Some adolescents had previous experiences with cancer before maternal diagnosis, however they did not understand it or had to learn about it before in the same level of detail: \u003cem\u003e“I didn't know as much detail about it until it came to my house\"\u003c/em\u003e (Anne).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eCancer also introduced feelings of anxiety and uncertainty in adolescents regarding their mother’s prognosis and how confident they felt about the illness and the future:\u003c/p\u003e\n\u003cp\u003eI was kind of like ‘was she better now?’ because she had the chemo and the radiation but no ... like I realized that she was still sick […] my head was all over the place and I didn’t really understand why she had to have the surgery (Anne).\u003c/p\u003e\n\u003cp\u003e1.2.\u0026nbsp; Facing perceptions and conflicting misconceptions\u003c/p\u003e\n\u003cp\u003eA cancer maternal diagnosis questioned adolescent’s beliefs and was conflicting and difficult as adolescents generally had a negative perception of cancer previously \"\u003cem\u003eI didn't think there was enough positive, like enough people who have had it and gotten past it. I didn't think that was highlighted enough\u003c/em\u003e\" (Shiloh). Many were faced with a wider misconception that death is an inevitable outcome of cancer, sharing that “\u003cem\u003epeople see cancer like a terminal illness\u003c/em\u003e” (Shiloh). \u0026nbsp;“\u003cem\u003eWhen I hear that word …cancer I just think ‘dead’\u003c/em\u003e” (Anne).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis belief was echoed in some adolescents’ recollections of learning about their mother’s cancer while others linked this association to past encounters with cancer: \"\u003cem\u003ea girl in my class had it and she died [...] I think we were 11\u003c/em\u003e\" (Claire). “\u003cem\u003eWhenever I thought about cancer before or ever imagined my mum... I just thought it was just the end of the world, and it would just be like the end\u003c/em\u003e” (Naomi).\u003c/p\u003e\n\u003cp\u003eAlthough these experiences did not always lead to a terminal prognosis, the notion of having cancer at a young age conflicted with adolescents’ views that life-threatening illness typically occurs in older people. “\u003cem\u003eMy granddad is old so it wasn’t like a big thing […] but mum was only...she was 45 or something when she got her cancer which is young enough\u003c/em\u003e” (Barbara).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMaternal cancer also questioned adolescents’ perception of the nature of life and its fragility. Adolescents recalled taking for granted that their mother would always be present in their lives, believing they were “\u003cem\u003einvincibl\u003c/em\u003ee” before their diagnosis (Shiloh). Cancer brought new perspectives about the fragile nature of life, notably that “\u003cem\u003esomething like cancer can happen at any time and just take your loved ones away from you\u003c/em\u003e” (Caroline). Some reflected on the possibility that this could return in the future, creating doubt about their mother’s likelihood of long-term survival. “\u003cem\u003eYou rarely hear people fighting it twice, it usually comes back and it is game over […] She is old, she is 63 now, so that...I know in my heart that that would be it”\u003c/em\u003e (Ella).\u003c/p\u003e\n\u003cp\u003eTheme 2: The emotional challenges of maternal diagnosis\u003c/p\u003e\n\u003cp\u003eA significant challenge introduced by maternal cancer to adolescents was a variety of emotions that were new and challenging to cope with. This theme is focused on adolescents’ experiences of how they navigated maternal cancer, highlighting variation in the cognitive and emotional responses experienced amongst the group. Most recalled disbelief and shock and, for some, this led to a realisation that no one is immune from experiencing cancer “\u003cem\u003eI used to always say ‘obviously that won’t happen to me’ but when you get older you realize it can”\u003c/em\u003e (Naomi). \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e2.1 Changed thoughts and emotions\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMaternal cancer changed adolescents’ thoughts and emotions, testing their coping skills in new ways. Adolescents reflected on the coping strategies they found most useful to help manage the uncertainty and distress of maternal cancer such as avoiding negative thinking and talking to others about what they were experiencing. Some had family and friends to talk to, others described recurring to professionals, which provided them with an opportunity to share and make sense of the experience. This, however was not the case for all of them. Some adolescents lacked a reflective space and shared they had to “\u003cem\u003estay strong\u003c/em\u003e” and “\u003cem\u003ecope\u003c/em\u003e” for the sake of their mother (Caroline). Some even questioned if they were worthy of this support: “I \u003cem\u003ecalled my mum once and she gave me the number of a counsellor but I didn’t call him […] I really didn’t feel like I deserved help\u003c/em\u003e” (Ella).\u003c/p\u003e\n\u003cp\u003eLoss was experienced in relation to their capacity to manage their thoughts and emotions. Some adolescents internalised their fears, describing a loss of control over worries and catastrophic thinking about their mother’s health: \u003cem\u003e“you could be constantly worrying and […] over analysing\u003c/em\u003e” (Shiloh). Avoidance was also used as a coping mechanism for their grief with some participants not wanting to speak about what happened at all. \u003cem\u003e“I didn’t want to talk about for so long because once I said it out loud it was really, it was real, and I just didn’t want that to be the case at all\u003c/em\u003e” (Shiloh).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThoughts and emotions could also be intrusive, further supporting adolescents’ perceived lack of control over their emotions: \u003cem\u003e“Every now and again you just kind of have these moments where you are just sitting there and it just hits you all of a sudden as bad as it did when you first found out”\u003c/em\u003e (Shiloh).\u003c/p\u003e\n\u003cp\u003eParticipants spoke about struggling to cope with their mother’s diagnosis and feeling unable to accept when she had gone into recovery. “\u003cem\u003eI am never going to feel that it just went away because it’s just consistently at the back of my mind all the time\u003c/em\u003e” (Shiloh). “\u003cem\u003eI think they said there is still something there but is completely benign. Even that makes like an alarm go off in my head … ‘it’s going to go wrong it’s going to go wrong’\u003c/em\u003e. (Ella).\u003c/p\u003e\n\u003cp\u003eNavigating the experience of maternal cancer was tough for many of the adolescents and sometimes resulted in anger and frustration building. One adolescent spoke of having “\u003cem\u003ebad days, emotionally\u003c/em\u003e” and becoming “\u003cem\u003eannoyed at very silly things\u003c/em\u003e”, suggesting that these could trigger conflict in the family (Anne). This led them to “\u003cem\u003edistance\u003c/em\u003e” themselves in their bedroom when this happened, while others sheltered in their room due to the negative effect that maternal cancer had on their mood, describing periods of depression.\u003c/p\u003e\n\u003cp\u003e“I just felt like everything was going wrong and this is not how it is supposed to be […] that everything was going to shit basically. I just sat in my room and cried for about three days and didn’t want to move, didn’t wash, didn’t really eat much ...” (Ella).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e2.2 Experiencing and living with fear\u003c/p\u003e\n\u003cp\u003eAnother loss of adolescent lives as they knew it before maternal diagnosis was having and coping with new fears. After processing the initial shock of the diagnosis, some were worried about aspects of treatment such as surgery “\u003cem\u003ein case anything went wrong\u003c/em\u003e” suggesting that the fear of physically losing their mother remained regardless of their nonterminal prognosis (Derek). The emotional toll that illness had on their mother was also touched upon, with one adolescent describing how helpless they felt in response to their mother’s poor emotional and physical health: “\u003cem\u003eIt seemed like she was really suffering […] I felt very helpless, like there was nothing I could do\u003c/em\u003e” (Caroline).\u003c/p\u003e\n\u003cp\u003eMost felt they were able to work through negative emotions and develop a sense of acceptance. This helped them feel more positive about their mother’s diagnosis and, for one adolescent, challenged their initial fear that maternal cancer would have a catastrophic end.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e“It was less scary once it was so close, because whenever I thought about cancer before or ever imagined my mum or […] anyone close to me having it... I just thought it was just the end of the world and it would just be like the end ... but when I got to know more about it […] I was more accepting of it and I understood it more so I realized she was going to get better” (Naomi).\u003c/p\u003e\n\u003cp\u003eMaternal cancer also changed adolescents’ thoughts and experiences long term. Adolescents feared they could get the illness themselves and became hypervigilant about their own health and bodies. \u0026nbsp;One adolescent spoke about being on “\u003cem\u003ehigh alert\u003c/em\u003e” for cancerous ailments, recalling how this hypervigilance impacted their ability to cope. “\u003cem\u003eIf I feel a lump anywhere I am like ‘Oh my God, it’s cancer, mum! Take me to the doctor\u003c/em\u003e’” (Barbara).\u003c/p\u003e\n\u003cp\u003eTheme 3: Systemic change in adolescents’’ lives\u003c/p\u003e\n\u003cp\u003eThis theme described change and loss in different areas of adolescents lives for example change in family dynamics, their priorities and everyday lives and responsibilities. Most adolescents focused on the extent\u0026nbsp;to which roles within their household changed while their mother received medical treatment away from the family home. This enabled adolescents to learn about empathy and value everything their mother did for them before getting ill, which they did not value as much before: \u003cem\u003e\"It’s only when they are sick that you realize how much they actually do for you and now is your turn to step into their shoes, if you like, and do as much as you can for them\u003c/em\u003e\" (Anne).\u003c/p\u003e\n\u003cp\u003e3.1\u0026nbsp;Understanding the impact of cancer on family dynamics\u003c/p\u003e\n\u003cp\u003eMaternal cancer changed adolescents’ normal lives and routines and they experienced this a loss. Some adolescents relied on extended family members to support with everyday tasks such as cooking and cleaning if their parents were busy at the hospital. However, their mother’s absence was still felt. \u003cem\u003e“It was a different routine, it felt different like specially when my mum was in hospital […] it was more quiet\u003c/em\u003e” (Derek).\u003c/p\u003e\n\u003cp\u003eChange was also experience in adolescents’ relationship with their mothers. For some, this relationship had improved in the aftermath of the diagnosis: “we were talking to each other every day […] it really brought us closer together\" (Barbara). However, cancer could negatively impact their relationship too. One adolescent described how supporting their mother led to parentification, in which they were tasked with prioritising their mother’s needs, leaving little space for them to receive maternal support. “I felt like I was the one kind of caring for her, I was the one making her feel better” (Caroline).\u003c/p\u003e\n\u003cp\u003e3.2 Perceived priorities and responsibilities\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eNot all adolescents experienced drastic changes in their lives or adopted caregiver duties while their mother was ill; some adolescents felt that life generally “\u003cem\u003estayed the same\u003c/em\u003e” and while they had always helped out with chores, no additional expectations were placed upon them (Naomi). Those who did take on more responsibilities explained how maternal cancer prompted them to reconsider their values. “\u003cem\u003eI just kind of ‘right, set my priorities now’. I was studying for like Christmas exams I said I didn’t matter so much. I tried to look after mum\u003c/em\u003e\" (Ryan). This, however, was also a loss of what was important to them and forced them into changing these priorities.\u003c/p\u003e\n\u003cp\u003eLoss associated to this extra helping role was perceived differentially for adolescents. Many were willing to help with everyday tasks such as cleaning or cooking for their mother’s sake: “\u003cem\u003eI just wanted to do anything I could to relieve some of the distress my mum was going through\u003c/em\u003e” (Shiloh). However, for others, taking on additional responsibilities was perceived as a loss as it was not a choice but an obligation. “\u003cem\u003eWhen she was in hospital my dad would be with her, so she depended on me to mind my little brother a good bit\u003c/em\u003e” (Elaine).\u003c/p\u003e\n\u003cp\u003eTheme 4: Symbolic losses of maternal cancer\u003c/p\u003e\n\u003cp\u003eThis theme is focused in describing further experiences of loss associated with loss, even though maternal cancer was not terminal, adolescents did experience loss in several areas of their life.\u003c/p\u003e\n\u003cp\u003eAdolescents tried to do the usual things they would usually do, such as spend time with friends, but this was not experienced in the same way as before:\u0026nbsp;\"\u003cem\u003eI still went to school, I still did my homework, I still had lunch with my friends […] it was still normal like ... then at the back of my mind mum is still sick\u003c/em\u003e” (Anne).\u003c/p\u003e\n\u003cp\u003e4.1 Loss of sense of control and privacy\u003c/p\u003e\n\u003cp\u003eUnderstanding cancer and remaining informed of their mother’s treatment was helpful for some adolescents, providing some sense of control. However, adolescents were aware that there was nothing they could do to overpower their mother’s illness\u003cem\u003e. “You are not in control of your parent’s cancer […] all you can do is try to look after your own wellbeing and have your parent know that you care about them and you are there for them\u003c/em\u003e” (Caroline).\u003c/p\u003e\n\u003cp\u003eAdolescents also lost their privacy and sometimes had no choice in who and how they wanted to share their maternal cancer experience.\u0026nbsp;Some adolescents avoided telling friends and teachers about their mother’s illness for fear of being treated differently while others were unable to maintain their privacy, especially if their mother had already spoken to the local community about her illness. One adolescent reported that their “\u003cem\u003eneighbourhood knows everything\u003c/em\u003e”, adding that “e\u003cem\u003even the Vice Principal’s wife would have driven mum [for treatment] one day\u003c/em\u003e\" (Elaine). This loss of privacy was particularly challenging for those who desired normality as a way of a coping. “\u003cem\u003eI just wanted to be left alone […] I didn’t want anyone treating me like I was a baby, I could deal with it myself\"\u003c/em\u003e (Ethan).\u003c/p\u003e\n\u003cp\u003e4.2\u0026nbsp;The impact of maternal cancer on educational experiences\u003c/p\u003e\n\u003cp\u003eLoss was significantly experience by adolescents with regards to their education and it was one of the areas most impacted by the diagnosis, therefore it was included as a subtheme of its own. All adolescents were attending school or college at the time of their mother’s diagnosis. Some felt their education was unaffected by their mother’s illness, with one adolescent crediting this to their ability to continue \u003cem\u003e“normally”: \"I just kind of put my head down and started working again”\u003c/em\u003e (Ryan). However, others struggled with this very much and experienced significant change and loss in this area.\u003c/p\u003e\n\u003cp\u003eWhen one adolescent requested to postpone their studies was denied by their School, their attendance was impacted by their desire to be closer to home with their mother and driving her mum to treatments. \"\u003cem\u003eI had already been to the college and asked if I could defer and they said I wasn’t allowed […] I really wasn’t going to college, if I am honest. I just didn’t have it\"\u003c/em\u003e (Barbara). This resulted in Barbara losing her first year of college and feeling very unsupported.\u003c/p\u003e\n\u003cp\u003eSimilarly, some of the adolescent’s educational experience was impaired by their coping response to maternal cancer, resulting in further loss of education for those who struggled from low mood. “\u003cem\u003eI didn’t leave my room for about three days, I wasn’t going to class so that made me feel even worse cause I was falling behind with school\u003c/em\u003e” (Ella). \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e4.3 Life was changed forever\u003c/p\u003e\n\u003cp\u003eChange and loss was significantly associated with their mothers in many aspects such as their relationship, their strength and their physical appearance. Adolescents described the impact of loss associated with their mothers’ usual looks as their hairstyle and colour: “\u003cem\u003eit was just kind of strange to see it go […] I didn’t really like seeing her with no hair”\u003c/em\u003e (Naomi). While many of the changes induced by treatment were temporary, some mothers required invasive procedures such as a mastectomy which resulted in permanent physical change. These experiences shaped the way they were perceived by their adolescents. \u003cem\u003e“I’ve never seen her that sick before [...] I just don’t like her being so upset or defeated in any way\u003c/em\u003e” (Barbara)\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eLoss was also experienced in adolescents’ childhood and maturity. Some adolescents were as young as nine years old when they first learnt about their mother’s illness, recalling how they “\u003cem\u003egrew up very fast\u003c/em\u003e” and comparing their childhood to those of their peers: “\u003cem\u003elooking after my brother […] in my school there wouldn’t have been many do that\u003c/em\u003e” (Elaine). One expressed a desire to “\u003cem\u003ebe a kid for longer, just to be with my parents more\u003c/em\u003e” suggesting that, with the loss of their childhood, their relationship with their parents had changed (Ella). This was reinforced by another adolescent who recalled being praised by their father for their maturity: “\u003cem\u003ehe was treating me like I could comprehend, as if I was an adult”\u003c/em\u003e (Caroline).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWith this shift from innocence to maturity, both the parent and adolescent perceived each other differently and experienced a loss in their roles which significantly impacted their relationship:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e“When she was at her very vulnerable stage I think it felt like the mother child relationships had reversed... I felt like I was the one kind of caring for her, I was the one making her feel better, she was the one crying onto my shoulder like metaphorically speaking, you know, I was the one there to make her feel better she was coming to me with concerns...and I felt that she was the vulnerable one...and it wasn’t so much that she became me, it was more that she became a young child, a very vulnerable young child...scared vulnerable child...and I just had to all of a sudden deal with this...I suppose make her not feel so scared, I had to comfort her at times....I felt like in a normal situation you’d be aware of the relationship with a person, you’d know the dynamic of it, I felt all of a sudden because everything had just been completely uprooted and reversed that my mother wasn’t really sure, she wasn’t sure of herself so she just saw me as another family member.. she didn’t see me as her daughter… I definitely feel that the lines between mother and daughter were blurred” (Caroline)\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe overarching aim of this study was to explore the perceptions and experiences of death and loss in adolescents dealing with nonterminal maternal cancer. Through a secondary thematic analysis, adolescents were found to consider these experiences across four main themes. \u0026nbsp;\u003cem\u003eLife would never be the same\u003c/em\u003e describes how cancer was associated with death and adolescents were challenged with their own perceptions. \u003cem\u003eThe emotional challenges of maternal diagnosis\u003c/em\u003e is the second theme which described how a cancer diagnosis changed adolescents thoughts and emotions and introduced new emotions such as fear and uncertainty which was challenging to cope with. Theme three is focused on the \u003cem\u003eSystemic change in adolescents lives which\u003c/em\u003e describes the loss of previous family dynamics, priorities, roles and responsibilities. Theme our describes the symbolic loss of maternal cancer, even though maternal cancer was not terminal, cancer still led to significant loss in adolescents’ lives, specifically in their sense of control and their privacy as with their education. Maternal cancer affected adolescents lives and relationships in such a way that life was changed forever as a result.\u003c/p\u003e\n\u003cp\u003eAdolescents in this study, similar to previous research were challenged by their own beliefs and previous experiences of cancer. Cancer was associated with death, even though a diagnosis was presented as nonterminal and this led to other emotions such as uncertainty and significant fear. This is similar to previous research by Jessop et al. (2022) fear experienced by adolescents could be due to pre-existing beliefs about cancer and death.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe study identified that adolescent with experience of non-terminal parental cancer also go \u0026nbsp;through profound change and loss, whether it be by postponing key life events such as higher education or through loss of daily routines. Some adolescents in this study experienced changes in family dynamics following a parental cancer diagnosis, often taking on caregiver duties for their ill parent such as caring for younger siblings or offering emotional support, while others perceive minimal change to the parental relationship, therefore loss of parental care may also present (Rodriguez et al., 2018; Rodriguez \u0026amp; Dolan, 2019). Adolescents in this study, as reported by previous research were also restricted in engaging in social activities and relationships due to additional responsibilities and taking on caregiving roles, therefore further impacting upon psychosocial development with limited or lost opportunities for development of social connections (Mroz et al., 2024; Pedersen \u0026amp; Revenson, 2005) which challenged their own developmental stage.\u003c/p\u003e\n\u003cp\u003eMany of the adolescents in this study recalled experiencing multiple brief or ongoing symptoms of grief such as shock and denial, anger and frustration, low mood and helplessness, and acceptance (Kubler Ross \u0026amp; Kessler, 1969; Stroebe et al., 2017). This finding reinforces the notion that (1) grief is a unique experience which may present differently in each adolescent facing parental illness and (2) grief can occur in absence of a physical death. These findings therefore align better with the concepts of ambiguous loss and disenfranchised grief, highlighting potential for non-death related loss to be disregarded as unworthy of mourning and spurring the development of unresolved grief. These findings suggest that adolescents’ experiences of maternal cancer tend to align with a different model of grief. For example, Tonkin’s (1996) proposal that grief continues to exist long after loss, coming and going from time to time, while life continues to grows around it, much like the yolk of a fried egg (Tonkin, 1996). This model normalizes experiences of grief as opposed to pathologizing anticipated emotional responses to loss, suggesting that individuals can continue to successfully grow and progress through life in tandem with their experiences of loss and grief.\u003c/p\u003e\n\u003cp\u003eEven though adolescents in this study did not experience maternal death, change and loss associated with maternal cancer is significant and adolescents can struggle to cope with it. Adolescent in this group experienced both adaptive and maladaptive coping mechanisms. Of the maladaptive mechanisms, some adolescents indicated that they felt unworthy of support which may suggest a sense of guilt towards their ill mother regarding their feelings or distorted views about themselves and the need to cope independently but also a limitation in seeking support early or at all. These distorted patterns of thinking may further reinforce the view that their mothers’ needs should be prioritised over their own, as illustrated within third theme of this study’s analysis. Moreover, some of the adolescents reported engagement in maladaptive strategies indicative of health anxiety, reporting increasing hypervigilance about the health of themselves of their mothers, and reassurance seeking behaviours (Rask et al., 2023). This highlights the need to provide supports for adolescents experiencing maternal illness with a focus on loss and grief, associated or not to death. Maternal cancer is a life changing experience with profound and possibly long-term consequences.\u003c/p\u003e\n\u003cp\u003eWhile research suggests that the extent of academic and social losses may vary depending on each adolescents’ unique circumstances and coping needs, the findings of this study raise further questions about the long-term effects of psychosocial deficits (Guzzo \u0026amp; Gobbi; 2021) experienced by adolescents as a result of maternal cancer. Adolescents in this study reported experiences which align with symbolic loss of their identity within the maternal relationship, whether that be their childhood (as a result of cancer forcing them to mature faster) or their identity as their mother’s child as opposed to their caregiver (due to role reversal and parentification. This finding adds to a growing body of research which highlights the potentially detrimental impact of caregiving duties on adolescents’ psychosocial development and sense of identity, and establishes evidence of this notion within adolescents dealing with parental cancer (Mroz et al., 2024).\u003c/p\u003e\n\u003cp\u003eOverall, this study suggests that adolescents may benefit from labelling and finding meaning in the parental cancer experience, adjusting their beliefs and expectations about their parents’ health and longevity, exploring and reconstructing their identity in light of systemic changes triggered by parental cancer, and normalising the ambivalence of these experiences (Mendenhall \u0026amp; Boss, 2022). They may require support from family or even from professionals to achieve this meaning making and face emotional and cognitive challenges of a parental cancer diagnosis and the level of significant change and loss experienced as a result.\u003c/p\u003e\n\u003cp\u003eOne strength of this study is that it provides the perspectives of adolescents themselves of death and loss associated with parental cancer. This strength overcomes a criticism often found in the literature that experiences are explored through the views of other informants (Karlsson et al., 2013). \u0026nbsp;This study, however, is a secondary data analysis which means the original data was not collected with the intention of responding to the research aim, and therefore some details about the experience may be limited by the scope of the original data collected. As another limitation of the findings is that the sample of adolescents included in this study belonged to a western population, which in no way undermines the validity and genuineness of their experience, but these experiences may not reflect the experience of all adolescents, particularly those in non-western contexts (Walczak et al., 2018).\u003c/p\u003e"},{"header":"References","content":"\u003cp\u003eAbi-Hashem, N. (1999). Grief, loss and bereavement: An overview. \u003cem\u003eJournal of Psychology and Christianity, 18\u003c/em\u003e(4), 309-329.\u003c/p\u003e\n\u003cp\u003eAlexander, E. S., Halkett, G. K. B., Lawrence, B. J., O'Connor, M. (2023). A Conceptual Model Depicting How Children Are Affected by Parental Cancer: A Constructivist Grounded Theory Approach. Children (Basel), 10 (9), 1-19. https://doi.org/10.3390/children10091507 \u003c/p\u003e\n\u003cp\u003eAlmulla, H. A. \u0026amp; Lewis, F. M. (2020). Losing Her: Children’s Reported Concern in the First 6 Months of Their Mother’s Breast Cancer Diagnosis. \u003cem\u003eCancer Nursing,\u003c/em\u003e 43 (6), 514-520. https://doi.org/10.1097/NCC.0000000000000763\u003c/p\u003e\n\u003cp\u003eAlvis K., Stroebe M. \u0026amp; Schut H. (2021) Stages of grief portrayed on the internet: A systematic analysis and critical appraisal. \u003cem\u003eFront.Psychol, 12\u003c/em\u003e: 772696. doi: 10.3389/fpsyg.2021.772696\u003c/p\u003e\n\u003cp\u003eBoelen, P. A., Eisma, M. C., de Keijser, J., \u0026amp; Lenferink, L. I. M. (2022). Traumatic stress, depression, and non-bereavement grief following non-fatal traffic accidents: Symptom patterns and correlates. \u003cem\u003ePloS One\u003c/em\u003e, 17(2), e0264497. https://doi.org/10.1371/journal.pone.026449\u003c/p\u003e\n\u003cp\u003eBowlby, J. (1980). Attachment and loss. Vol. III. Loss: Sadness and depression. Hogarth.\u003c/p\u003e\n\u003cp\u003eBraun, V. \u0026amp; Clarke, V. (2006). Using thematic analysis in Psychology. \u003cem\u003eQualitative Research in Psychology\u003c/em\u003e, 3 (2), 77-101, https://doi.org/10.1191/1478088706qp063oa\u003c/p\u003e\n\u003cp\u003eCoyer, S.M., Gallo, A.M., 2005. Secondary analysis of data\u003cem\u003e. J. Pediatr. Health Care 19\u003c/em\u003e (1), 60–63. https://doi.org/10.1016/j.pedhc.2004.10.003.\u003c/p\u003e\n\u003cp\u003eDavey, M., Gulish, L., Askew, J., Godette, K., \u0026amp; Childs, N. (2005). Adolescents coping with mom's breast cancer: Developing family intervention programs\u003cem\u003e. Journal of Marital and Family Therapy,\u003c/em\u003e 31(2), 247-258\u003c/p\u003e\n\u003cp\u003eDoka, K. J. (2023). Bereavement: A sociological perspective. In E. M. Steffen, E. Milman, R.A. Neimeyer (Eds.) The Handbook of Grief Therapies. (pp. 189–198). SAGE\u003c/p\u003e\n\u003cp\u003eDuncan, D. A. (2020). Death and dying: A systematic review into approaches used to support bereaved children. \u003cem\u003eReview of Education, 8\u003c/em\u003e(2), 452-479.\u003c/p\u003e\n\u003cp\u003eFinch, A., \u0026amp; Gibson, F. (2009). How do young people find out about their parent's cancer diagnosis: A phenomenological study. E\u003cem\u003european Journal of Oncology Nursing, \u003c/em\u003e13(3), 213- 222. https://doi.org/10.1016/j.ejon.2009.03.010\u003c/p\u003e\n\u003cp\u003eGuldin, M. B., \u0026amp; Leget, C. (2024). The integrated process model of loss and grief-An interprofessional understanding.\u003cem\u003e Death Studies\u003c/em\u003e, 48(7), 738-752.\u003c/p\u003e\n\u003cp\u003eGuzzo, F. M., \u0026amp; Gobbi, G. (2023). Parental Death During Adolescence: A Review of the Literature. OMEGA - \u003cem\u003eJournal of Death and Dying\u003c/em\u003e, 87 1223(4), 1207-1237. https://doi.org/10.1177/00302228211033661 \u003c/p\u003e\n\u003cp\u003eHauken, M A., Senneseth, M., Dyregrov, A. \u0026amp; Dyregrov, K. (2018). Anxiety and the Quality of Life of Children Living With Parental Cancer. \u003cem\u003eCancer Nursing,\u003c/em\u003e 41 (1), 19- 27. https://doi.org/10.1097/NCC.0000000000000467\u003c/p\u003e\n\u003cp\u003eHowell K., Barret-Becker E., Burnside A., Wamser-Nanney R., Layne C. \u0026amp; Kaplow J. (2016) Children facing parental cancer versus parental death: the buffering effects of positive parental and emotional expression. \u003cem\u003eJournal of Child and Family Studies, 25\u003c/em\u003e, 152-164. \u003c/p\u003e\n\u003cp\u003eInhestern, L., Bultmann, J. C., Johannsen, L. M., Beierlein, V., Moller, B., Romer, G., Koch, U., \u0026amp; Bergelt, C. (2021a). Estimates of Prevalence Rates of Cancer Patients with Children and Well-Being in Affected Children: A Systematic Review on Population Based Findings. F\u003cem\u003erontiers in psychiatry\u003c/em\u003e, 12, 765314. https://doi.org/10.3389/fpsyt.2021.765314\u003c/p\u003e\n\u003cp\u003eJessop, M., Fischer, A., \u0026amp; Good, P. (2022). Impact of expected parental death on the health of adolescent and young adult children: A systematic review of the literature\u003cem\u003e. Palliative Medicine,\u003c/em\u003e 36(6), 928-937. https://doi.org/10.1177/02692163221092618\u003c/p\u003e\n\u003cp\u003eKim, K. H., Kim, M. S., Choi, S., Kim, S. M. \u0026amp; Park, S. M. (2022). Health behaviours and psychological burden of adolescents after parental cancer diagnosis. \u003cem\u003eScientific Reports\u003c/em\u003e, 12, 1-11.| https://doi.org/10.1038/s41598-022-25256-5\u003c/p\u003e\n\u003cp\u003eKubler Ross, E. \u0026amp; Kessler D. (1969) On grief and grieving. New York: Sricbner.\u003c/p\u003e\n\u003cp\u003eLargan, C., Morris, T., 2019. \u003cem\u003eQualitative Secondary Research A Step-by-step Guide\u003c/em\u003e. SAGE, London.\u003c/p\u003e\n\u003cp\u003eMartins, H., Romeiro, J., Casaleiro, T., Vieira, M., \u0026amp; Caldeira, S. (2024). Insights on spirituality and bereavement: A systematic review of qualitative studies. \u003cem\u003eJournal of Clinical Nursing,\u003c/em\u003e 33 (5), 1593-1603.\u003c/p\u003e\n\u003cp\u003eMcLaughlin, C., Lytje, M., \u0026amp; Holliday, C. (2019). Consequences of childhood bereavement in the context of the British school system. Faculty of Education, University of Cambridge.\u003c/p\u003e\n\u003cp\u003eMendenhall, T.J., Boss, P. (2022). Ambiguous Loss: Contemporary Applications and Theoretical Extensions. In: Adamsons, K., Few-Demo, A.L., Proulx, C., Roy, K. (eds) Sourcebook of Family Theories and Methodologies. Springer, Cham. https://doi.org/10.1007/978-3-030-92002-9_37\u003c/p\u003e\n\u003cp\u003eMorris, J. N., Martini, A., \u0026amp; Preen, D. (2016). The well-being of children impacted by a parent with cancer: an integrative review. \u003cem\u003eSupportive Care in Cancer\u003c/em\u003e, 24, 3235-3251.\u003c/p\u003e\n\u003cp\u003eMroz, E. L., Kastrinos, A., Bacharz, K., Fisher, C. L. \u0026amp; Applebaum, A. J. (2024). “A little bit different now”: Impacts of caregiving for parent with cancer on psychosocial development in emerging and young adulthood. \u003cem\u003eDeath Studies\u003c/em\u003e, 1-12. https://doi.org/10.1080/07481187.2024.2309488\u003c/p\u003e\n\u003cp\u003eMurray, J. (2023). Grief and Loss. In N. Beel, C. Chinchen, T. Machin \u0026amp; C. du Plessis (Eds.), Common Client Issues in Counselling: An Australian Perspective. University of Southern Queensland. https://usq.pressbooks.pub/counselling/chapter/grief-and-loss/\u003c/p\u003e\n\u003cp\u003eO’Connor, C. \u0026amp; and Joffe, H. (2020). Intercoder Reliability in Qualitative Research: Debates and Practical Guidelines. \u003cem\u003eInternational Journal of Qualitative Methods\u003c/em\u003e, 19, 1- 13. https://doi.org/10.1177/1609406919899220\u003c/p\u003e\n\u003cp\u003ePatton, G. C., Sawyer, S. M., Santelli, J. S., Ross, D. A., Afifi, R., Allen, N. B., Arora, M., Azzopardi, P., Baldwin, W., Bonell, C., Kakuma, R., Kennedy, E., Mahon, J., McGovern, T., Mokdad, A. H., Patel, V., Petroni, S., Reavley, N., Taiwo, K., Waldfogel, J., Wickremarathne, D., Barroso, C., Bhutta, Z., Fatusi, A. O., Mattoo, A., Diers, J., Fang, J., Ferguson, J., Ssewamala, F., Viner, R. M. (2016). Our future: a Lancet commission on adolescent health and wellbeing. Lancet. 387 (10036), 2423- 278. https://doi.org/10.1016/S0140-6736(16)00579-1\u003c/p\u003e\n\u003cp\u003ePedersen, S., \u0026amp; Revenson, T. A. (2005). Parental illness, family functioning, and adolescent well-being: a family ecology framework to guide research\u003cem\u003e. Journal of Family Psychology,\u003c/em\u003e 19(3), 404-409. https://doi.org/10.1037/0893-3200.19.3.404\u003c/p\u003e\n\u003cp\u003eRevet, A., Bui, E., Benvegnu, G., Suc, A., Mesquida, L., \u0026amp; Raynaud, J. P. (2020). Bereavement and reactions of grief among children and adolescents: Present data and perspectives. L'encephale, 46(5), 356-363.\u003c/p\u003e\n\u003cp\u003eRodriguez, L. (2016). Understanding adolescent adjustment to maternal cancer: a study of personal experiences and psychosocial factors that promote adjustment. Unpublished doctoral dissertation, A Doctorate thesis submitted for the Degree of PhD to the National University of Ireland Galway, Galway. https://aran.library.nuigalway.ie/handle/10379/5534\u003c/p\u003e\n\u003cp\u003eRodriguez L., Groarke A., Dolan P. \u0026amp; MacNeela P. (2018) Adolescent adjustment to maternal cancer: an interpretative phenomenological analysis (IPA).\u003cem\u003e Qualitative Research Journal\u003c/em\u003e, 18(4), 345-358. https://doi.org/10.1108/QRJ-D-17-00034\u003c/p\u003e\n\u003cp\u003eRodriguez, L., \u0026amp; Dolan, P. (2019). “It’s your turn to step into their shoes” The role of empathy in adolescents experiencing maternal cancer. \u003cem\u003eQualitative Research Journal,\u003c/em\u003e 19 (3), 213-224. https://doi.org/10.1108/QRJ-D-18-00045 \u003c/p\u003e\n\u003cp\u003eRodríguez, L. (2020). An exploration of resilience in adolescents facing maternal cancer.\u003cem\u003e Cancer Reports\u003c/em\u003e, 3(2), e1208.\u003c/p\u003e\n\u003cp\u003eSantos, S., Sá, T., Aguiar, I., Cardoso, I., Correia, Z., \u0026amp; Correia, T. (2021). Case report: Parental loss and childhood grief during COVID-19 pandemic. Frontiers in Psychiatry, 12. https://doi.org/10.3389/fpsyt.2021.626940 \u003c/p\u003e\n\u003cp\u003eShear, M. K., Ghesquiere, A., \u0026amp; Glickman, K. (2013). Bereavement and complicated grief. \u003cem\u003eCurrent Psychiatry Reports\u003c/em\u003e, 15(11), 406-413\u003c/p\u003e\n\u003cp\u003eSieh, D. S., Meijer, A. M., Oort, F. J., Visser-Meily, J. M. A., \u0026amp; Van der Leij, D. A. V. (2010). Problem behavior in children of chronically ill parents: a meta-analysis. \u003cem\u003eClinical Child and Family Psychology Review, 13\u003c/em\u003e, 384-397.\u003c/p\u003e\n\u003cp\u003eSilva, S. (2024). The Five Stages of Grief: Understanding the Mourning Process.\u003c/p\u003e\n\u003cp\u003eSilverman, G. S., Baroiller, A., \u0026amp; Hemer, S. R. (2021). Culture and grief: Ethnographic perspectives on ritual, relationships and remembering. \u003cem\u003eDeath Studies\u003c/em\u003e, 45(1), 1–8. https://doi.org/10.1080/07481187.2020.1851885\u003c/p\u003e\n\u003cp\u003eSoby, A. K.. H., Moos, C. M., Andersen, A. H., Ravn, S. L., Andersen, C. M. \u0026amp; Roessler, K. K. (2023). Adolescents’ needs for information and psychosocial support during their mother’s breast cancer trajectory: A systematic review. \u003cem\u003ePsycho-Oncology\u003c/em\u003e, 32 (8), 1163-1172. https://doi.org/10.1002/pon.6172\u003c/p\u003e\n\u003cp\u003eStroebe, M., Schut, H., \u0026amp; Boerner, K. (2017). Cautioning health-care professionals: Bereaved persons are misguided through the stages of grief. OMEGA - Journal of Death and Dying, 74(4), 455–473. https://doi.org/10.1177/0030222817691870\u003c/p\u003e\n\u003cp\u003eSu, Y. H., \u0026amp; Ryan-Wenger, N. A. (2007). Children's adjustment to parental cancer: a theoretical model development. Cancer Nursing, 30(5), 362-381.\u003c/p\u003e\n\u003cp\u003eTonkin, L. (1996). Growing around grief—another way of looking at grief and recovery. Bereavement Care, 15 (1), 10–10. https://doi.org/10.1080/02682629608657376\u003c/p\u003e\n\u003cp\u003eUNICEF (2022). UNICEF –Adolescents. (Online) Available at: https://data.unicef.org/topic/adolescents/overview/\u003c/p\u003e\n\u003cp\u003eVisser, A., Huizinga, G. A., van der Graaf, W. T., Hoekstra, H. J., \u0026amp; Hoekstra-Weebers, J. E. (2004). The impact of parental cancer on children and the family: a review of the literature. \u003cem\u003eCancer Treatment Reviews,\u003c/em\u003e 30(8), 683-694.\u003c/p\u003e\n\u003cp\u003eWalczak, A., McDonald, F., Patterson, P., Dobinson, K., \u0026amp; Allison, K. (2018). How does parental cancer affect adolescent and young adult offspring? A systematic review. \u003cem\u003eInternational Journal of Nursing Studies\u003c/em\u003e, 77, 54–80. https://doi.org/10.1016/j.ijnurstu.2017.08.017\u003c/p\u003e\n\u003cp\u003eWickham R. (2019) Secondary analysis research. \u003cem\u003eJournal of the Advanced Practitioner in Oncology, 1\u003c/em\u003e(10), 395-400. https://doi.org/10.6004/jadpro.2019.10.4.7\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Adolescent, death, loss, parental cancer","lastPublishedDoi":"10.21203/rs.3.rs-6441123/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6441123/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"A diagnosis of parental cancer, even not terminal, can have a significant and adverse impact on adolescent mental health. Research comparing youth experiencing parental cancer with those experiencing parental death identified that while adolescents experiencing parental cancer showed lower levels of posttraumatic stress disorder, but both groups exhibited similar levels of depression and anxiety. In this study we explored the perceptions and experiences of death and loss in adolescents dealing with nonterminal maternal cancer. A qualitative secondary thematic analysis was carried out with 15 interviews of adolescents between 14 and 20 years of age, both males and females. Their mothers had been diagnosed with cancer between 10 and 29 months previous to the interview. The analysis yielded 4 overarching themes. Life would never be the same describes how cancer was associated with death and adolescents’ perceptions were challenged. The emotional challenges of maternal diagnosis details changes in adolescents’ thoughts and emotions, introducing fear and uncertainty which was challenging. The Systemic change in adolescents’ lives narrates the loss of family dynamics, priorities, roles and responsibilities. The symbolic loss of maternal cancer, shows how nonterminal cancer led to significant loss in adolescent sense of control, privacy and education. Maternal cancer affected adolescents lives and relationships in such a way that life was changed forever as a result. Maternal cancer has a profound effect on loss and grief in adolescents, even though cancer was nonterminal. Therefore, these experiences must be validated and appropriate supports provided.","manuscriptTitle":"Perceptions of death and loss in adolescents experiencing non-terminal maternal cancer: A qualitative secondary data analysis","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-01-18 12:04:42","doi":"10.21203/rs.3.rs-6441123/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"ac08fe4c-b350-466d-8d1d-31ffe6419fd4","owner":[],"postedDate":"January 18th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-01-21T16:24:39+00:00","versionOfRecord":[],"versionCreatedAt":"2026-01-18 12:04:42","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6441123","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6441123","identity":"rs-6441123","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}