Navigating family life in the face of parental cancer: a qualitative study

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J. Schellekens, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8396001/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 22 Apr, 2026 Read the published version in Supportive Care in Cancer → Version 1 posted 9 You are reading this latest preprint version Abstract Purpose Parental cancer can significantly impact family dynamics, particularly for adolescents and young adults (AYAs), who face the developmental task of balancing autonomy and connectedness. As cancer incidence rises globally, more AYAs are confronted with the challenges of parental illness. While most research focuses on individual psychological outcomes, less is known about how families function as a unit under such stress. This study aimed to gain deeper insight into family functioning, with a specific focus on autonomy, connectedness, and communication, in the face of parental cancer. Methods We conducted an exploratory qualitative study using thematic analysis. Semi-structured in-depth interviews were conducted with 8 families (13 parents, 14 AYAs) in which one parent had been diagnosed with cancer. The interview design included separate interviews with parent(s), child(ren), and a joint family interview. Results Thematic analysis yielded three main themes: Children’s struggle between personal space and family life , barriers and opportunities in family communication , and redefining connectedness . These themes illustrate how families attempt to balance autonomy and connectedness, and the role of communication in this. Conclusion Families facing parental cancer develop different ways to balance autonomy and connectedness. In some families, strong emotional attunement naturally supported this balance, even in the absence of open communication. Others struggled more with these dynamics. Practical strategies such as maintaining meaningful activities, doing activities that foster open communication, humor, and involving children in the medical process can support family resilience. When emotional attunement does not arise naturally, family-based interventions may help strengthen these processes. Psychosocial family functioning parental cancer autonomy connectedness communication Introduction Family dynamics change when a parent is diagnosed with cancer, affecting not only the patient, but also their partner and children. Vissers et al. [ 1 ] report in their literature review that children whose parent is diagnosed with cancer often exhibit behavioral problems, internalizing problems, and disturbed physical and cognitive functioning. Much of this research has focused on younger children, while far less is known about adolescents and young adults (AYAs). These psychosocial outcomes are influenced by family functioning (i.e., the quality of communication, cohesion, and conflict within the family), as worse family functioning is associated with more psychosocial problems for AYAs [ 2 , 3 ]. As global cancer incidence rises due to aging and population growth, more AYAs face parental cancer [ 4 ]. Lifetime prevalence estimates indicate that between 1.6% and 8.4% of AYAs have a parent with a history of cancer, underscoring the increasing relevance of this issue [ 5 ]. Parental cancer during the AYA years can be particularly challenging due to the dynamic nature of this life stage for children, characterized by significant cognitive, social and emotional development resulting in a growing autonomy over one’s own life [ 2 ]. Specifically, the AYA tries to establish an individual identity, form intimate relationships outside one’s family, pursue a career and gain financial independence [ 6 ]. In this phase, balancing growing autonomy and family connectedness is essential for a healthy identity formation [ 7 ]. However, a parental cancer diagnosis could impede this process of balancing autonomy and connectedness, as role shifts, caregiving responsibilities and emotional strains may undermine autonomy and connectedness [ 8 , 9 ]. Family resilience plays a crucial role in navigating the challenges that come with a cancer diagnosis and is defined as ‘the capacity of the family, as a functional system, to withstand and rebound from stressful life challenges – emerging strengthened and more resourceful’ [ 10 ]. The family resilience framework highlights strengths under stress, in response to crisis or with prolonged adversity. It includes three key processes for family resilience: 1. family belief systems, including making meaning of adversity; 2. organizational patterns, including connectedness and autonomy; 3. communication, including open emotional expression. This study focuses on connectedness, communication, and autonomy. Connectedness involves mutual support, collaboration, and commitment among family members, while also respecting AYAs autonomy, including their individual needs, differences, and boundaries. Communication refers to family members sharing their emotions, making sense of painful experiences, and preventing isolation. Communication is also a key factor of family connectedness, with lower levels of adolescent-parent communication being linked to reduced family cohesion in the context of adolescents with cancer [ 11 ]. While most of the research has focused on the individual impact of cancer on the patient, spouse and child, one area that has received little attention is the impact of parental cancer on the family dynamics. In-depth insight into a family’s strengths and abilities is essential for preventing mental health problems and supporting families dealing with cancer. The main aim of the present study was to gain a deeper understanding of family functioning, and in particular autonomy, connectedness and the role of communication, in families with AYAs in the age of 15–29 facing parental cancer. Qualitative research can help identify the adaptive strategies of families with parental cancer. Method Study population Families were eligible if at least one parent had a cancer diagnosis and had at least one child aged 15–29 at time of participation. Participation required both the ill parent (current or past diagnosis) and at least one child from the same family. Participants also needed to be able to speak and read Dutch. Procedures Recruitment took place from December 2023 to November 2024 via social media and healthcare professionals at the Helen Dowling Institute (HDI), a mental healthcare center for psycho-oncology. Interested families received an information letter and informed consent by mail. After signed consent, participants completed a short socio-demographic and clinical questionnaire, after which interviews were scheduled, consisting of separate parent(s)-only, child(ren)-only and joint family interviews. These semi-structured interviews were conducted by the first author (GZ), two HDI therapists, or a research assistant. Where possible, interviews with parent(s) and child(ren) were held before the family interview. Interviews took place at participants' homes (n = 2) or online (n = 19) and lasted 33–99 minutes. The interview schedule was based on Walsh’s family resilience framework [ 10 ] and developed with input from family therapists from HDI, see Table 1 for the interview guide. Following a brief introduction to the interview, participants were asked questions about autonomy, connectedness, and communication. Each interview concluded with a question to share advice for other families. Joint family interviews built on themes from individual sessions, capturing real-time family dynamics. This study was approved by Tilburg University’s ethics review board under reference number RP1049. Table 1 Guide for semi-structured interviews Topic Parent interview AYA interview Family interview Opening How did you feel when you heard the diagnosis? How did you discuss this within the family? How did you feel when you heard your parent was ill? What does your family look like? Autonomy Are your children able to live their own life? What helps? What limits? Has this changed? What would help for more balance? Do you recognize that it can be difficult to do your own things when your parent is ill? Do you feel you have the freedom to do so? What limits you? Has this changed? What would be a good balance? What would help? Do you recognize that it can be difficult to live your own life when your parent is ill? What does it mean to you to feel free? How do you ensure this? What limits you? Has this changed since the illness? What would be a good balance? Connectedness What is the relationship like with your child(ren)? When do you feel connected? Has this changed since the illness? What the relationship like with your parents and siblings? When do you feel connected? What helps you feel connected? Has this changed since the illness? What helps you feel “together” as a family? What could help even more? Communication What is communication like within your family? Has this changed since the illness? Are there things you do not discuss? What helps to be open? What could help? Same as parent interview Is your family one that easily or hardly discusses things? Has this changed since the illness? Are there things you do not discuss? What helps to be open? What could help? Closing Is there anything else you’d like to discuss that we haven’t already discussed? Do you have any advice for other families? Same as parent interview Same as parent interview Data analysis Interviews were recorded and transcribed verbatim for analysis by author GZ and a research assistant. The interviews were subsequently analyzed in ATLAS.ti (Version 24) using inductive thematic analysis following the phases outlined by Braun and Clarke [ 12 ]. Within the topics of autonomy, communication, and connectedness, coding was inductive. The first six interviews were independently coded by GZ and HB, with discrepancies discussed until consensus was reached. Codes were then reviewed with ML and MS and adjusted accordingly. This led to a coding framework where codes consisted of 1) the main topic, 2) family member, and 3) an inductive summary. Additional topics (coping, emotions, and tips) emerged during coding. The remaining interviews were coded by GZ. Themes were generated stepwise with all authors, discussing the codes and their underlying quotes, merging similar codes, refining and defining the finalized themes and subthemes. Results Sample characteristics A total of 21 interviews were conducted with 8 families: 7 with parent(s), 7 with child(ren), and 7 with the whole family, see Table 3 for the family-level clinical characteristics. Notably, in family G only a joint interview was held, whereas in family B only separate interviews were conducted. Data collection ended upon thematic saturation. The sample consisted of families where at least one parent had been diagnosed with cancer, most commonly breast cancer (55.6%). The time since diagnosis ranged from 27 months to 11 years. The majority of ill parents were women (75%). For full sociodemographic and clinical characteristics of the 27 participants, see Table 2. Table 3 Clinical Characteristics of the 8 Families Family Patient Parents interviewed Parental living situation Children interviewed Child age(s)* Time since diagnosis in months Treatment intent A Father 2 Married/living together 2/2 21,18 29 Non curative B Mother 2 Married/living together 2/2 23,20 130 Non curative C Both (father died) 1 Widowed 1/2 26 (29) 53 Curative D Mother 1 Divorced 1/3 19 (17 + 21) 29 Curative E Both 2 Married/living together 2/3 29, 26 (31) 168 (mother), 151(father) Curative (both) F Mother 1 Single 1/3 21 (11 + 18) 44 Curative G Mother 2 Married/living together 2/4 20, 17 (7 + 12) 84 Non curative H Mother 2 Married/living together 1/2 17 (14) 27 Curative Thematic analysis The thematic analysis yielded three main themes: (1) Children’s struggle between personal space and family life, (2) barriers and opportunities in family communication, and (3) redefining connectedness. Several sub-themes emerged from the data. These (sub-)themes describe the challenges of families with parental cancer, who deal with balancing facing the disease and maintaining a sense of normality as a family. The themes and their subthemes are outlined in the sections below. Theme 1: Children’s struggle between personal space and family life Children described a continuous struggle between their need for personal space and their sense of responsibility towards their family. Looking for normalcy outside the home Some children consciously seek an environment outside the family, such as engaging in sports activities, to momentarily step away from the illness at home. Stepping away from the role of "the child of a parent with cancer" can bring a sense of relief, allowing them to participate in activities that restore a feeling of normalcy. ‘ I had a gap year after high school and I liked being completely out there for a while and I also liked getting to know a whole new group of people there with whom you are not always that kid with the two parents with cancer. ’ – Family E, child, 26 Feeling guilty about living their own life For children, taking their own space often comes with feelings of guilt, especially when they spend time away from home. For example, they feel the need to check in daily with their sick parent. Parents’ reaction could further increase these feelings of guilt and pressure them to spend more time at home: “Sometimes I find it difficult, like when I go to have dinner at my best friend’s house in the evening. For example, they’ll say something like, ‘Oh, off to [your friend] again? Must be nice.’ Comments like that get to me because they amplify the guilt I already feel. It makes me feel ten times worse. I still go, but I leave with a heavy heart. So, I’m still trying to find the right balance in that.” – Family B, child, 20 Feeling responsible for family duties Many children feel an increased sense of responsibility within the household. Especially in single-parent families where the absence of another adult increases the pressure to help. This can mean taking over household chores, caring for siblings, or supporting the sick parent emotionally. “I don't have many memories from the period after my mom’s diagnosis, because I shifted into a role of providing as much support as possible. I took on a lot of household responsibilities so that my father wouldn't have to do too much, and I also tried to shield my younger sister from it, so she could have a relatively normal childhood. I didn’t want to take the joy away from her.” - Family B, child, 23 Consciously choosing family time While many children struggle between being present and seeking space, some choose to spend more time with their ill parent. A poor prognosis increases their awareness of limited time, prompting them to stay closer to home. One child reflects on this dilemma: “Sometimes we all have dinner, talk and laugh together. And then I think: I won’t have that once I move out. And what if I move out, and six months later she passes away? Won’t I regret missing out on those moments?” – Family B, child, 23 Theme 2: barriers and opportunities in family communication Communication within families was often limited, especially when it came to expressing emotions. This theme explores both the barriers that hinder open dialogue as well as moments when emotional connection was possible. Non-verbal communication Families do not always need words to understand each other. Participants described how, upon hearing the diagnosis, they cried together and embraced one another. Family members are also often able to sense each other’s emotions without speaking. They pick up on non-verbal cues such as facial expressions, which can signal that something is wrong and trigger a sense of concern or alertness. “I clearly remember my mom picking me up from school, and even just seeing her face from the bus, I already knew something was wrong. I had no idea what, but I could tell.” – Family E, child, 29 Limited communication in survival mode During diagnosis, treatment, or disease progression, families entered a “survival mode”: “I think we were all in a kind of survival mode, just trying to get through this period. You don’t reflect, you just keep going: surgeries, appointments, treatments. You push forward.” – Family D, sick mother, divorced, 3 children In this mode, there was little space for reflection or communication. Parents focused on the bare minimum of keeping things going, while children faced their usual challenges at school and in social life, now layered with the additional strain of changing family dynamics. Not wanting to burden others with feelings Participants shared little of their own worries and emotions related to the cancer with family members. Children tended to keep their feelings to themselves, believing their parents’ suffering was more severe and their own struggles less important. “I can’t remember a time when, while she was sick, you would say something like, "I feel terrible too" or anything like that. Not that it wasn’t possible, but you just don’t do that easily. After all, she’s the one who’s ill, and that’s obviously much worse.” – Family F, child, 21 This norm made it harder for parents to understand how their children were truly feeling. At the same time, parents did not set an example of openness either, as they avoided sharing their own concerns in an attempt to shield their children and preserve a sense of normalcy. Being active together supports communication Spontaneous moments, like driving, walking, or biking together, make it easier for family members to talk, as conversations arise naturally and feel less heavy. “I remember that I usually brought things up while cycling. I just found it easier. On the bike, you must look ahead, so you don’t have to make eye contact. If we had been sitting face-to-face, it might have felt a bit awkward.” – Family A, child, 18 Parents described how they actively create moments of connectedness, for example by going on holiday with a child or having lunch or sports together, making an effort to spend one-on-one time with their child to keep it easy for conversation to occur. Focus on practicalities of emotionally charged issues Emotional topics were often difficult to discuss, while practical matters were addressed more easily. Families coordinated hospital visits, shared updates, or arranged household responsibilities together. “As long as we communicated clearly, everything was fine. My sister and I used a group chat to set a schedule for household tasks. It was all very practical, not really about emotions. But it brought calm and let everyone focus on their own activities.’ – Family D, child, 19 Some families also talked about funeral wishes such as burial or cremation, music choices, or the handling of ashes, although these conversations often focused more on logistics than on the emotional meaning behind them. Theme 3: Redefining connectedness Since the illness, families noted an increased sense of connectedness. The presence of cancer required new strategies for maintaining this bond. Families developed various ways to foster connectedness. The medical process as a shared family experience Children differed in the extent to which they were involved in the parent's illness. Some parents actively included their children in the medical process, for example, by taking them to medical appointments or involving them in choosing a grave. “My daughter came with me when I went to pick out a wig. Those were intense moments, but sharing them together helped us stay connected.” – Family F, sick mother, single, 3 children On the other hand, some parents chose not to involve their children in the medical process to avoid burdening them with the weight of caregiving. In addition, some children preferred to distance themselves from their parents’ medical process. Recognizing and responding to each other’s needs When family members are able to sense and respond to each other’s needs, it can strengthen their sense of connectedness. This alignment doesn’t always require words. Being emotionally aligned can offer comfort and support during difficult times, strengthening the connection between parent and child. “I think that sometimes the feeling of connection came more from experiencing intense moments together. For example, there was a day when my mother wasn’t feeling well because of the chemo, and we spent the whole day lying down and listening to music together. Those are memories that have really stayed with me and created a sense of connection, but in a completely different way than, for example, doing sports together for fun.” – Family E, child, 26 Family members were sometimes unaware of each other's needs. They may miss signals or hesitate to act, unsure of how to be there for one another, which can lead to moments of distance or silence. “At one point, I was lying upstairs while the three of them were here (downstairs) together. I think it was the first or second day (since chemotherapy had started - GZ). They were sitting here together, enjoying each other’s company, but at the same time, they didn’t dare to leave. But they also didn’t dare to come upstairs to ask, “Mom, how are you doing?” because they assumed I was asleep.” – Family D, sick mother, divorced, 3 children Continuing to enjoy quality time together despite limitations Engaging in enjoyable activities helped families maintain cohesion. Despite cancer-related limitations, parents found new ways to spend quality time, preserving a sense of connection. “I regularly go to Ajax (Dutch football club) with the boys, so we were watching football instead of playing football like we did before. Well, it’s not exactly a big adventure. But you do have a moment together as a family.” – Family E, ill father, 3 children Humor as a family coping For family members, dealing with cancer and stressful situations is challenging. Humor can be a way to make situations less stressful and serious, while still acknowledging the presence of cancer. “I'm very happy that we have that humor with each other, that we can really laugh at things, even though those things were sometimes very miserable. That takes the sting out of it for a while.” – Family F, sick mother, single, 3 children Discussion The present study explored how families with AYAs balanced autonomy and connectedness during parental cancer, and the role of communication in this. Some children consciously choose to spend time with their family, seeing it as an autonomic choice. They could search for normalcy outside the house, while others struggled with the balance of feeling responsible for the family and feeling guilty living their own life. Children’s struggles with autonomy were less present in families with strong connectedness. Sharing the medical process as a family contributed to this sense of connectedness. One important factor in fostering connectedness was emotional attunement. When family members sensed each other well, the lack of open communication about illness-related difficulties was not problematic. In families lacking this emotional attunement, the lack of open communication resulted in a greater distance and more misunderstandings between the child and the parent. Being active together (e.g. cycling together) could then facilitate emotional conversations. In Walsh’s framework, family processes are understood as dynamic and synergistic, amplifying each other [ 10 ]. In the present study, we observe a similar process between autonomy, connectedness and communication. Some families reported a strong balance between autonomy and connectedness. Children felt closely connected to their family while simultaneously experiencing autonomy in making their own choices. Despite limited explicit communication, they were attuned to one another and experienced connectedness through implicit understanding. In well-functioning families, we see that autonomy, connectedness, and communication all reinforce each other positively. In contrast, there were families in which limited communication coincided with uncertainty about each other’s needs and avoidance of emotionally charged conversations. This resulted in a reduced sense of connectedness. Because children were not open about their own needs, they could experience feelings of guilt when they needed space for themselves. This complicated the balance between autonomy and connectedness. Previous research also found that children struggle with this balance, describing that young carers alternate between wanting to care and wanting to escape [ 13 ]. Looking for normalcy outside their own home is essential for the wellbeing of adolescents and young adults, though some struggle with feelings of guilt when choosing their own life over that of the family. When this balance between connectedness and autonomy is disrupted, the lack of connectedness, communication and autonomy also amplifies, creating a negative vicious circle. The amplifying patterns described above are also seen in couples coping with cancer, where protective buffering (withholding personal concerns to avoid burdening the other) is associated with decreased relationship functioning [ 14 ], while open communication supports stronger relationships [ 15 ]. Limitations & strengths Nearly 70% of participants were highly educated, limiting generalizability. For future research, more diverse samples should be included. Moreover, children’s ages were recorded at the time of interview, not during illness, meaning the cancer trajectory could have occurred years earlier, potentially affecting recall and reflecting a different developmental stage. Nevertheless, the joint family interview captured shared reflections and real-time dynamics, while the individual interviews allowed parents and children to share their perspectives without influence from other(s). Together, these provide a valuable source of information. Future research could build upon this study by using in-the-moment approaches such as experience sampling to capture interaction patterns within families. Practical implications Our findings suggest several ways professionals can support families living with parental cancer. In hospital settings, nurses can play a preventive role by considering the needs of the entire family, not only the patient, and by actively involving children when they wish to participate, for example by providing medical information in age-appropriate ways. Professionals should also help families in strengthening existing emotional bonds, help foster mutual understanding and emotional attunement. When emotional attunement is lacking and family members appear unable to understand each other, referral to a systemic therapist may be required. In addition, these insights offer practical guidance for families themselves, such as maintaining meaningful activities, doing activities that foster open communication, using humor, and involving children in the medical process to support family resilience. Conclusion This study investigated how families need to find new ways to navigate the balance between autonomy and connectedness, and communication when confronted with parental cancer. In some families, strong emotional attunement appeared to make navigating autonomy and connectedness naturally. Even though open communication was limited, this did not appear problematic. Other families struggled more with these dynamics. Practical implications include continuing meaningful family activities - adapted to the limitations of illness, doing activities that foster open communication, using humor, and involving children in the medical process. When emotional attunement does not arise naturally, supportive interventions such as family therapy may help strengthen this. Declarations Acknowledgements We would like to sincerely thank all participants for sharing their experiences with us during their cancer journey. We thank Beatrijs Lens for initiating this research line on families, the therapists of the Helen Dowling Institute for their assistance in the recruitment of participants and Hanneke Beenackers, Margreth Baks, Mahmoed Chamany Zadeh, Anouk Brekhof and Anke Geerts for conducting the interviews. Author contributions ML designed the study. GZ organized data collection, carried out the thematic analysis and drafted the first version of the manuscript. HB was actively involved in analysis and revising the manuscript. MS and ML helped to revise the manuscript. All authors agreed with the final analysis and interpretation. Funding The study is funded by Rotary op Seyst, a fundraising organization that made this research possible. Ethics approval and consent to participate All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committees of the Ethical Review Board of Tilburg School of Social and Behavioral Sciences, the Netherlands (RP1049), and the principles of the revised Declaration of Helsinki. Informed consent was obtained from all individual participants included in the study. Participants signed informed consent regarding publishing their data. Competing interests The authors declare no competing interests. Data availability The datasets generated and/or analyzed in the current study are not available publicly as eligible patients were informed before start of the interviews that their data would be stored securely and confidentially. References Visser A, Huizinga GA, van der Graaf WTA, Hoekstra HJ, Hoekstra-Weebers JEHM. The impact of parental cancer on children and the family: a review of the literature. 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Supplementary Files Table2.docx Cite Share Download PDF Status: Published Journal Publication published 22 Apr, 2026 Read the published version in Supportive Care in Cancer → Version 1 posted Editorial decision: Revision requested 19 Feb, 2026 Reviews received at journal 19 Feb, 2026 Reviews received at journal 15 Feb, 2026 Reviewers agreed at journal 13 Feb, 2026 Reviewers agreed at journal 21 Jan, 2026 Reviewers invited by journal 20 Jan, 2026 Editor assigned by journal 20 Jan, 2026 Submission checks completed at journal 07 Jan, 2026 First submitted to journal 18 Dec, 2025 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. 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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-8396001","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":577848727,"identity":"e676e41a-5f84-42d5-b2ac-a0700a71b0e4","order_by":0,"name":"Gerdien van der Zwaag","email":"data:image/png;base64,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","orcid":"","institution":"Helen Dowling Instituut","correspondingAuthor":true,"prefix":"","firstName":"Gerdien","middleName":"van der","lastName":"Zwaag","suffix":""},{"id":577848731,"identity":"5e62299c-fb1c-46f6-8238-353f546877a3","order_by":1,"name":"H.J Bragt- de Jong","email":"","orcid":"","institution":"Tilburg University","correspondingAuthor":false,"prefix":"","firstName":"H.J","middleName":"Bragt-","lastName":"de Jong","suffix":""},{"id":577848749,"identity":"32db4b5e-b385-4492-bdfa-7d3465a6bb8c","order_by":2,"name":"Melanie P. J. Schellekens","email":"","orcid":"","institution":"Tilburg University","correspondingAuthor":false,"prefix":"","firstName":"Melanie","middleName":"P. J.","lastName":"Schellekens","suffix":""},{"id":577848753,"identity":"acd952b7-3537-4b73-ad89-238e088b28b5","order_by":3,"name":"Marije L. van der Lee","email":"","orcid":"","institution":"Helen Dowling Instituut","correspondingAuthor":false,"prefix":"","firstName":"Marije","middleName":"L. van der","lastName":"Lee","suffix":""}],"badges":[],"createdAt":"2025-12-18 13:38:12","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-8396001/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8396001/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1007/s00520-026-10670-6","type":"published","date":"2026-04-22T15:58:57+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":100887564,"identity":"21d56352-e2d2-4fdb-80e3-70565ed4b10b","added_by":"auto","created_at":"2026-01-22 12:32:00","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":61554,"visible":true,"origin":"","legend":"","description":"","filename":"Navigatingfamilylifewithparentalcancer.docx","url":"https://assets-eu.researchsquare.com/files/rs-8396001/v1/a5c22436a31ee44d2743d864.docx"},{"id":100887563,"identity":"00b4e0f6-2d67-4009-9e03-77d8ea399ffb","added_by":"auto","created_at":"2026-01-22 12:31:59","extension":"json","order_by":1,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":6786,"visible":true,"origin":"","legend":"","description":"","filename":"b3220ab3831d4ac0bbfda9ba4939c267.json","url":"https://assets-eu.researchsquare.com/files/rs-8396001/v1/950173f36cf66bfa68b83c6f.json"},{"id":100887565,"identity":"22d67541-42b7-4bae-941c-10e8bb18dc85","added_by":"auto","created_at":"2026-01-22 12:32:00","extension":"xml","order_by":2,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":78356,"visible":true,"origin":"","legend":"","description":"","filename":"b3220ab3831d4ac0bbfda9ba4939c2671enriched.xml","url":"https://assets-eu.researchsquare.com/files/rs-8396001/v1/5e09ebd89a98fcf1974b4f62.xml"},{"id":100887561,"identity":"2f379d4a-42e5-4e99-95fb-5e8921a42c4e","added_by":"auto","created_at":"2026-01-22 12:31:59","extension":"xml","order_by":3,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":74729,"visible":true,"origin":"","legend":"","description":"","filename":"b3220ab3831d4ac0bbfda9ba4939c2671structuring.xml","url":"https://assets-eu.researchsquare.com/files/rs-8396001/v1/bfdf89930f4348070b4627ed.xml"},{"id":101202969,"identity":"f12b67c7-d455-4402-b541-0c1b7056a58e","added_by":"auto","created_at":"2026-01-27 09:38:19","extension":"html","order_by":4,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":87917,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-8396001/v1/1e23984e9d955dc18af160b2.html"},{"id":107928364,"identity":"24ef4a62-3523-41df-955d-7e2e3aa7d184","added_by":"auto","created_at":"2026-04-27 16:10:15","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":275208,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8396001/v1/07beac33-e5ec-4f1f-9fcf-e2754ebe3858.pdf"},{"id":100887559,"identity":"51d735d4-67a2-4a37-894a-57c5ebd84e13","added_by":"auto","created_at":"2026-01-22 12:31:59","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":16303,"visible":true,"origin":"","legend":"","description":"","filename":"Table2.docx","url":"https://assets-eu.researchsquare.com/files/rs-8396001/v1/ec7dbae13bfe7b485010b0c2.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Navigating family life in the face of parental cancer: a qualitative study","fulltext":[{"header":"Introduction","content":"\u003cp\u003eFamily dynamics change when a parent is diagnosed with cancer, affecting not only the patient, but also their partner and children. Vissers et al. [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e] report in their literature review that children whose parent is diagnosed with cancer often exhibit behavioral problems, internalizing problems, and disturbed physical and cognitive functioning. Much of this research has focused on younger children, while far less is known about adolescents and young adults (AYAs). These psychosocial outcomes are influenced by family functioning (i.e., the quality of communication, cohesion, and conflict within the family), as worse family functioning is associated with more psychosocial problems for AYAs [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. As global cancer incidence rises due to aging and population growth, more AYAs face parental cancer [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Lifetime prevalence estimates indicate that between 1.6% and 8.4% of AYAs have a parent with a history of cancer, underscoring the increasing relevance of this issue [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eParental cancer during the AYA years can be particularly challenging due to the dynamic nature of this life stage for children, characterized by significant cognitive, social and emotional development resulting in a growing autonomy over one\u0026rsquo;s own life [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. Specifically, the AYA tries to establish an individual identity, form intimate relationships outside one\u0026rsquo;s family, pursue a career and gain financial independence [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. In this phase, balancing growing autonomy and family connectedness is essential for a healthy identity formation [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. However, a parental cancer diagnosis could impede this process of balancing autonomy and connectedness, as role shifts, caregiving responsibilities and emotional strains may undermine autonomy and connectedness [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eFamily resilience plays a crucial role in navigating the challenges that come with a cancer diagnosis and is defined as \u0026lsquo;the capacity of the family, as a functional system, to withstand and rebound from stressful life challenges \u0026ndash; emerging strengthened and more resourceful\u0026rsquo; [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. The family resilience framework highlights strengths under stress, in response to crisis or with prolonged adversity. It includes three key processes for family resilience: 1. family belief systems, including making meaning of adversity; 2. organizational patterns, including connectedness and autonomy; 3. communication, including open emotional expression. This study focuses on connectedness, communication, and autonomy. Connectedness involves mutual support, collaboration, and commitment among family members, while also respecting AYAs autonomy, including their individual needs, differences, and boundaries. Communication refers to family members sharing their emotions, making sense of painful experiences, and preventing isolation. Communication is also a key factor of family connectedness, with lower levels of adolescent-parent communication being linked to reduced family cohesion in the context of adolescents with cancer [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eWhile most of the research has focused on the individual impact of cancer on the patient, spouse and child, one area that has received little attention is the impact of parental cancer on the family dynamics. In-depth insight into a family\u0026rsquo;s strengths and abilities is essential for preventing mental health problems and supporting families dealing with cancer. The main aim of the present study was to gain a deeper understanding of family functioning, and in particular autonomy, connectedness and the role of communication, in families with AYAs in the age of 15\u0026ndash;29 facing parental cancer. Qualitative research can help identify the adaptive strategies of families with parental cancer.\u003c/p\u003e"},{"header":"Method","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy population\u003c/h2\u003e \u003cp\u003e Families were eligible if at least one parent had a cancer diagnosis and had at least one child aged 15\u0026ndash;29 at time of participation. Participation required both the ill parent (current or past diagnosis) and at least one child from the same family. Participants also needed to be able to speak and read Dutch.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eProcedures\u003c/h3\u003e\n\u003cp\u003eRecruitment took place from December 2023 to November 2024 via social media and healthcare professionals at the Helen Dowling Institute (HDI), a mental healthcare center for psycho-oncology. Interested families received an information letter and informed consent by mail. After signed consent, participants completed a short socio-demographic and clinical questionnaire, after which interviews were scheduled, consisting of separate parent(s)-only, child(ren)-only and joint family interviews. These semi-structured interviews were conducted by the first author (GZ), two HDI therapists, or a research assistant. Where possible, interviews with parent(s) and child(ren) were held before the family interview. Interviews took place at participants' homes (n\u0026thinsp;=\u0026thinsp;2) or online (n\u0026thinsp;=\u0026thinsp;19) and lasted 33\u0026ndash;99 minutes.\u003c/p\u003e \u003cp\u003eThe interview schedule was based on Walsh\u0026rsquo;s family resilience framework [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e] and developed with input from family therapists from HDI, see Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e for the interview guide. Following a brief introduction to the interview, participants were asked questions about autonomy, connectedness, and communication. Each interview concluded with a question to share advice for other families. Joint family interviews built on themes from individual sessions, capturing real-time family dynamics.\u003c/p\u003e \u003cp\u003e This study was approved by Tilburg University\u0026rsquo;s ethics review board under reference number RP1049.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eGuide for semi-structured interviews\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTopic\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eParent interview\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eAYA interview\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eFamily interview\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOpening\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHow did you feel when you heard the diagnosis?\u003c/p\u003e \u003cp\u003eHow did you discuss this within the family?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eHow did you feel when you heard your parent was ill?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eWhat does your family look like?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAutonomy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAre your children able to live their own life?\u003c/p\u003e \u003cp\u003eWhat helps?\u003c/p\u003e \u003cp\u003eWhat limits?\u003c/p\u003e \u003cp\u003eHas this changed?\u003c/p\u003e \u003cp\u003eWhat would help for more balance?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDo you recognize that it can be difficult to do your own things when your parent is ill?\u003c/p\u003e \u003cp\u003eDo you feel you have the freedom to do so?\u003c/p\u003e \u003cp\u003eWhat limits you?\u003c/p\u003e \u003cp\u003eHas this changed?\u003c/p\u003e \u003cp\u003eWhat would be a good balance?\u003c/p\u003e \u003cp\u003eWhat would help?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDo you recognize that it can be difficult to live your own life when your parent is ill?\u003c/p\u003e \u003cp\u003eWhat does it mean to you to feel free?\u003c/p\u003e \u003cp\u003eHow do you ensure this?\u003c/p\u003e \u003cp\u003eWhat limits you?\u003c/p\u003e \u003cp\u003eHas this changed since the illness?\u003c/p\u003e \u003cp\u003eWhat would be a good balance?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eConnectedness\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhat is the relationship like with your child(ren)?\u003c/p\u003e \u003cp\u003eWhen do you feel connected?\u003c/p\u003e \u003cp\u003eHas this changed since the illness?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eWhat the relationship like with your parents and siblings?\u003c/p\u003e \u003cp\u003eWhen do you feel connected?\u003c/p\u003e \u003cp\u003eWhat helps you feel connected?\u003c/p\u003e \u003cp\u003eHas this changed since the illness?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eWhat helps you feel \u0026ldquo;together\u0026rdquo; as a family?\u003c/p\u003e \u003cp\u003eWhat could help even more?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCommunication\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhat is communication like within your family?\u003c/p\u003e \u003cp\u003eHas this changed since the illness?\u003c/p\u003e \u003cp\u003eAre there things you do not discuss?\u003c/p\u003e \u003cp\u003eWhat helps to be open?\u003c/p\u003e \u003cp\u003eWhat could help?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eSame as parent interview\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eIs your family one that easily or hardly discusses things?\u003c/p\u003e \u003cp\u003eHas this changed since the illness?\u003c/p\u003e \u003cp\u003eAre there things you do not discuss?\u003c/p\u003e \u003cp\u003eWhat helps to be open?\u003c/p\u003e \u003cp\u003eWhat could help?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eClosing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIs there anything else you\u0026rsquo;d like to discuss that we haven\u0026rsquo;t already discussed?\u003c/p\u003e \u003cp\u003eDo you have any advice for other families?\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eSame as parent interview\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSame as parent interview\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eInterviews were recorded and transcribed verbatim for analysis by author GZ and a research assistant. The interviews were subsequently analyzed in ATLAS.ti (Version 24) using inductive thematic analysis following the phases outlined by Braun and Clarke [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. Within the topics of autonomy, communication, and connectedness, coding was inductive. The first six interviews were independently coded by GZ and HB, with discrepancies discussed until consensus was reached. Codes were then reviewed with ML and MS and adjusted accordingly. This led to a coding framework where codes consisted of 1) the main topic, 2) family member, and 3) an inductive summary. Additional topics (coping, emotions, and tips) emerged during coding. The remaining interviews were coded by GZ. Themes were generated stepwise with all authors, discussing the codes and their underlying quotes, merging similar codes, refining and defining the finalized themes and subthemes.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec7\"\u003e\n \u003ch2\u003eSample characteristics\u003c/h2\u003e\n \u003cp\u003eA total of 21 interviews were conducted with 8 families: 7 with parent(s), 7 with child(ren), and 7 with the whole family, see Table 3 for the family-level clinical characteristics. Notably, in family G only a joint interview was held, whereas in family B only separate interviews were conducted. Data collection ended upon thematic saturation. The sample consisted of families where at least one parent had been diagnosed with cancer, most commonly breast cancer (55.6%). The time since diagnosis ranged from 27 months to 11 years. The majority of ill parents were women (75%). For full sociodemographic and clinical characteristics of the 27 participants, see Table 2. \u0026nbsp;\u003c/p\u003e\n \u003ctable id=\"Tab3\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv\u003eTable 3 \u003cem\u003eClinical Characteristics of the 8 Families\u003c/em\u003e\u003c/div\u003e\n \u003cdiv\u003e\u003cbr\u003e\u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eFamily\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003ePatient\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eParents interviewed\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eParental living situation\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eChildren interviewed\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eChild age(s)*\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eTime since diagnosis in months\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eTreatment intent\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eFather\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMarried/living together\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2/2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e21,18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e29\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNon curative\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eB\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMother\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMarried/living together\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2/2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e23,20\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e130\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNon curative\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eC\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eBoth (father died)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWidowed\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1/2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e26 (29)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e53\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCurative\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eD\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMother\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eDivorced\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1/3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e19 (17\u0026thinsp;+\u0026thinsp;21)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e29\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCurative\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eE\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eBoth\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMarried/living together\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2/3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e29, 26 (31)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e168 (mother), 151(father)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCurative (both)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eF\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMother\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSingle\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1/3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e21 (11\u0026thinsp;+\u0026thinsp;18)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e44\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCurative\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMother\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMarried/living together\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2/4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e20, 17 (7\u0026thinsp;+\u0026thinsp;12)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e84\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNon curative\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eH\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMother\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMarried/living together\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1/2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e17 (14)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e27\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCurative\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003cp\u003eThematic analysis\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec8\"\u003e\n \u003cdiv id=\"Sec9\"\u003e\n \u003cp\u003eThe thematic analysis yielded three main themes: (1) Children\u0026rsquo;s struggle between personal space and family life, (2) barriers and opportunities in family communication, and (3) redefining connectedness. Several sub-themes emerged from the data. These (sub-)themes describe the challenges of families with parental cancer, who deal with balancing facing the disease and maintaining a sense of normality as a family. The themes and their subthemes are outlined in the sections below.\u003c/p\u003e\n \u003c/div\u003e\n\u003c/div\u003e\u003cdiv class=\"Heading\"\u003e\u003cb\u003eTheme 1: Children\u0026rsquo;s struggle between personal space and family life\u003c/b\u003e\u003c/div\u003e \u003cp\u003eChildren described a continuous struggle between their need for personal space and their sense of responsibility towards their family.\u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eLooking for normalcy outside the home\u003c/h2\u003e \u003cp\u003eSome children consciously seek an environment outside the family, such as engaging in sports activities, to momentarily step away from the illness at home. Stepping away from the role of \"the child of a parent with cancer\" can bring a sense of relief, allowing them to participate in activities that restore a feeling of normalcy.\u003c/p\u003e \u003cp\u003e\u0026lsquo;\u003cem\u003eI had a gap year after high school and I liked being completely out there for a while and I also liked getting to know a whole new group of people there with whom you are not always that kid with the two parents with cancer.\u003c/em\u003e\u0026rsquo; \u0026ndash; Family E, child, 26\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eFeeling guilty about living their own life\u003c/h2\u003e \u003cp\u003eFor children, taking their own space often comes with feelings of guilt, especially when they spend time away from home. For example, they feel the need to check in daily with their sick parent. Parents\u0026rsquo; reaction could further increase these feelings of guilt and pressure them to spend more time at home:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Sometimes I find it difficult, like when I go to have dinner at my best friend\u0026rsquo;s house in the evening. For example, they\u0026rsquo;ll say something like, \u0026lsquo;Oh, off to [your friend] again? Must be nice.\u0026rsquo; Comments like that get to me because they amplify the guilt I already feel. It makes me feel ten times worse. I still go, but I leave with a heavy heart. So, I\u0026rsquo;m still trying to find the right balance in that.\u0026rdquo; \u0026ndash;\u003c/em\u003e Family B, child, 20\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eFeeling responsible for family duties\u003c/h2\u003e \u003cp\u003eMany children feel an increased sense of responsibility within the household. Especially in single-parent families where the absence of another adult increases the pressure to help. This can mean taking over household chores, caring for siblings, or supporting the sick parent emotionally.\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I don't have many memories from the period after my mom\u0026rsquo;s diagnosis, because I shifted into a role of providing as much support as possible. I took on a lot of household responsibilities so that my father wouldn't have to do too much, and I also tried to shield my younger sister from it, so she could have a relatively normal childhood. I didn\u0026rsquo;t want to take the joy away from her.\u0026rdquo; -\u003c/em\u003e Family B, child, 23\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eConsciously choosing family time\u003c/h2\u003e \u003cp\u003eWhile many children struggle between being present and seeking space, some choose to spend more time with their ill parent. A poor prognosis increases their awareness of limited time, prompting them to stay closer to home. One child reflects on this dilemma:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Sometimes we all have dinner, talk and laugh together. And then I think: I won\u0026rsquo;t have that once I move out. And what if I move out, and six months later she passes away? Won\u0026rsquo;t I regret missing out on those moments?\u0026rdquo; \u0026ndash;\u003c/em\u003e Family B, child, 23\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eTheme 2: barriers and opportunities in family communication\u003c/h2\u003e \u003cp\u003eCommunication within families was often limited, especially when it came to expressing emotions. This theme explores both the barriers that hinder open dialogue as well as moments when emotional connection was possible.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eNon-verbal communication\u003c/h2\u003e \u003cp\u003eFamilies do not always need words to understand each other. Participants described how, upon hearing the diagnosis, they cried together and embraced one another. Family members are also often able to sense each other\u0026rsquo;s emotions without speaking. They pick up on non-verbal cues such as facial expressions, which can signal that something is wrong and trigger a sense of concern or alertness.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I clearly remember my mom picking me up from school, and even just seeing her face from the bus, I already knew something was wrong. I had no idea what, but I could tell.\u0026rdquo; \u0026ndash;\u003c/em\u003e Family E, child, 29\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eLimited communication in survival mode\u003c/h2\u003e \u003cp\u003eDuring diagnosis, treatment, or disease progression, families entered a \u0026ldquo;survival mode\u0026rdquo;:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I think we were all in a kind of survival mode, just trying to get through this period. You don\u0026rsquo;t reflect, you just keep going: surgeries, appointments, treatments. You push forward.\u0026rdquo;\u003c/em\u003e \u0026ndash; Family D, sick mother, divorced, 3 children\u003c/p\u003e \u003cp\u003eIn this mode, there was little space for reflection or communication. Parents focused on the bare minimum of keeping things going, while children faced their usual challenges at school and in social life, now layered with the additional strain of changing family dynamics.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eNot wanting to burden others with feelings\u003c/h2\u003e \u003cp\u003eParticipants shared little of their own worries and emotions related to the cancer with family members. Children tended to keep their feelings to themselves, believing their parents\u0026rsquo; suffering was more severe and their own struggles less important.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I can\u0026rsquo;t remember a time when, while she was sick, you would say something like, \"I feel terrible too\" or anything like that. Not that it wasn\u0026rsquo;t possible, but you just don\u0026rsquo;t do that easily. After all, she\u0026rsquo;s the one who\u0026rsquo;s ill, and that\u0026rsquo;s obviously much worse.\u0026rdquo;\u003c/em\u003e \u0026ndash; Family F, child, 21\u003c/p\u003e \u003cp\u003eThis norm made it harder for parents to understand how their children were truly feeling. At the same time, parents did not set an example of openness either, as they avoided sharing their own concerns in an attempt to shield their children and preserve a sense of normalcy.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003eBeing active together supports communication\u003c/h2\u003e \u003cp\u003eSpontaneous moments, like driving, walking, or biking together, make it easier for family members to talk, as conversations arise naturally and feel less heavy.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I remember that I usually brought things up while cycling. I just found it easier. On the bike, you must look ahead, so you don\u0026rsquo;t have to make eye contact. If we had been sitting face-to-face, it might have felt a bit awkward.\u0026rdquo; \u0026ndash;\u003c/em\u003e Family A, child, 18\u003c/p\u003e \u003cp\u003eParents described how they actively create moments of connectedness, for example by going on holiday with a child or having lunch or sports together, making an effort to spend one-on-one time with their child to keep it easy for conversation to occur.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eFocus on practicalities of emotionally charged issues\u003c/h2\u003e \u003cp\u003eEmotional topics were often difficult to discuss, while practical matters were addressed more easily. Families coordinated hospital visits, shared updates, or arranged household responsibilities together.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;As long as we communicated clearly, everything was fine. My sister and I used a group chat to set a schedule for household tasks. It was all very practical, not really about emotions. But it brought calm and let everyone focus on their own activities.\u0026rsquo; \u0026ndash;\u003c/em\u003e Family D, child, 19\u003c/p\u003e \u003cp\u003eSome families also talked about funeral wishes such as burial or cremation, music choices, or the handling of ashes, although these conversations often focused more on logistics than on the emotional meaning behind them.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003eTheme 3: Redefining connectedness\u003c/h2\u003e \u003cp\u003eSince the illness, families noted an increased sense of connectedness. The presence of cancer required new strategies for maintaining this bond. Families developed various ways to foster connectedness.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003eThe medical process as a shared family experience\u003c/h2\u003e \u003cp\u003eChildren differed in the extent to which they were involved in the parent's illness. Some parents actively included their children in the medical process, for example, by taking them to medical appointments or involving them in choosing a grave.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;My daughter came with me when I went to pick out a wig. Those were intense moments, but sharing them together helped us stay connected.\u0026rdquo; \u0026ndash;\u003c/em\u003e Family F, sick mother, single, 3 children\u003c/p\u003e \u003cp\u003e On the other hand, some parents chose not to involve their children in the medical process to avoid burdening them with the weight of caregiving. In addition, some children preferred to distance themselves from their parents\u0026rsquo; medical process.\u003c/p\u003e \u003cdiv id=\"Sec23\" class=\"Section3\"\u003e \u003ch2\u003eRecognizing and responding to each other\u0026rsquo;s needs\u003c/h2\u003e \u003cp\u003eWhen family members are able to sense and respond to each other\u0026rsquo;s needs, it can strengthen their sense of connectedness. This alignment doesn\u0026rsquo;t always require words. Being emotionally aligned can offer comfort and support during difficult times, strengthening the connection between parent and child.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I think that sometimes the feeling of connection came more from experiencing intense moments together. For example, there was a day when my mother wasn\u0026rsquo;t feeling well because of the chemo, and we spent the whole day lying down and listening to music together. Those are memories that have really stayed with me and created a sense of connection, but in a completely different way than, for example, doing sports together for fun.\u0026rdquo;\u003c/em\u003e \u0026ndash; Family E, child, 26\u003c/p\u003e \u003cp\u003eFamily members were sometimes unaware of each other's needs. They may miss signals or hesitate to act, unsure of how to be there for one another, which can lead to moments of distance or silence.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;At one point, I was lying upstairs while the three of them were here (downstairs) together. I think it was the first or second day (since chemotherapy had started - GZ). They were sitting here together, enjoying each other\u0026rsquo;s company, but at the same time, they didn\u0026rsquo;t dare to leave. But they also didn\u0026rsquo;t dare to come upstairs to ask, \u0026ldquo;Mom, how are you doing?\u0026rdquo; because they assumed I was asleep.\u0026rdquo; \u0026ndash;\u003c/em\u003e Family D, sick mother, divorced, 3 children\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec24\" class=\"Section2\"\u003e \u003ch2\u003eContinuing to enjoy quality time together despite limitations\u003c/h2\u003e \u003cp\u003eEngaging in enjoyable activities helped families maintain cohesion. Despite cancer-related limitations, parents found new ways to spend quality time, preserving a sense of connection.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I regularly go to Ajax\u003c/em\u003e (Dutch football club) \u003cem\u003ewith the boys, so we were watching football instead of playing football like we did before. Well, it\u0026rsquo;s not exactly a big adventure. But you do have a moment together as a family.\u0026rdquo; \u0026ndash;\u003c/em\u003e Family E, ill father, 3 children\u003c/p\u003e \u003cdiv id=\"Sec25\" class=\"Section3\"\u003e \u003ch2\u003eHumor as a family coping\u003c/h2\u003e \u003cp\u003eFor family members, dealing with cancer and stressful situations is challenging. Humor can be a way to make situations less stressful and serious, while still acknowledging the presence of cancer.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I'm very happy that we have that humor with each other, that we can really laugh at things, even though those things were sometimes very miserable. That takes the sting out of it for a while.\u0026rdquo; \u0026ndash;\u003c/em\u003e Family F, sick mother, single, 3 children\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe present study explored how families with AYAs balanced autonomy and connectedness during parental cancer, and the role of communication in this. Some children consciously choose to spend time with their family, seeing it as an autonomic choice. They could search for normalcy outside the house, while others struggled with the balance of feeling responsible for the family and feeling guilty living their own life. Children\u0026rsquo;s struggles with autonomy were less present in families with strong connectedness. Sharing the medical process as a family contributed to this sense of connectedness. One important factor in fostering connectedness was emotional attunement. When family members sensed each other well, the lack of open communication about illness-related difficulties was not problematic. In families lacking this emotional attunement, the lack of open communication resulted in a greater distance and more misunderstandings between the child and the parent. Being active together (e.g. cycling together) could then facilitate emotional conversations.\u003c/p\u003e \u003cp\u003eIn Walsh\u0026rsquo;s framework, family processes are understood as dynamic and synergistic, amplifying each other [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. In the present study, we observe a similar process between autonomy, connectedness and communication. Some families reported a strong balance between autonomy and connectedness. Children felt closely connected to their family while simultaneously experiencing autonomy in making their own choices. Despite limited explicit communication, they were attuned to one another and experienced connectedness through implicit understanding. In well-functioning families, we see that autonomy, connectedness, and communication all reinforce each other positively.\u003c/p\u003e \u003cp\u003eIn contrast, there were families in which limited communication coincided with uncertainty about each other\u0026rsquo;s needs and avoidance of emotionally charged conversations. This resulted in a reduced sense of connectedness. Because children were not open about their own needs, they could experience feelings of guilt when they needed space for themselves. This complicated the balance between autonomy and connectedness. Previous research also found that children struggle with this balance, describing that young carers alternate between wanting to care and wanting to escape [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Looking for normalcy outside their own home is essential for the wellbeing of adolescents and young adults, though some struggle with feelings of guilt when choosing their own life over that of the family. When this balance between connectedness and autonomy is disrupted, the lack of connectedness, communication and autonomy also amplifies, creating a negative vicious circle.\u003c/p\u003e \u003cp\u003eThe amplifying patterns described above are also seen in couples coping with cancer, where protective buffering (withholding personal concerns to avoid burdening the other) is associated with decreased relationship functioning [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e], while open communication supports stronger relationships [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e].\u003c/p\u003e \u003cdiv id=\"Sec27\" class=\"Section2\"\u003e \u003ch2\u003eLimitations \u0026amp; strengths\u003c/h2\u003e \u003cp\u003eNearly 70% of participants were highly educated, limiting generalizability. For future research, more diverse samples should be included. Moreover, children\u0026rsquo;s ages were recorded at the time of interview, not during illness, meaning the cancer trajectory could have occurred years earlier, potentially affecting recall and reflecting a different developmental stage. Nevertheless, the joint family interview captured shared reflections and real-time dynamics, while the individual interviews allowed parents and children to share their perspectives without influence from other(s). Together, these provide a valuable source of information. Future research could build upon this study by using in-the-moment approaches such as experience sampling to capture interaction patterns within families.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec28\" class=\"Section2\"\u003e \u003ch2\u003ePractical implications\u003c/h2\u003e \u003cp\u003eOur findings suggest several ways professionals can support families living with parental cancer. In hospital settings, nurses can play a preventive role by considering the needs of the entire family, not only the patient, and by actively involving children when they wish to participate, for example by providing medical information in age-appropriate ways. Professionals should also help families in strengthening existing emotional bonds, help foster mutual understanding and emotional attunement. When emotional attunement is lacking and family members appear unable to understand each other, referral to a systemic therapist may be required. In addition, these insights offer practical guidance for families themselves, such as maintaining meaningful activities, doing activities that foster open communication, using humor, and involving children in the medical process to support family resilience.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study investigated how families need to find new ways to navigate the balance between autonomy and connectedness, and communication when confronted with parental cancer.\u003c/p\u003e \u003cp\u003eIn some families, strong emotional attunement appeared to make navigating autonomy and connectedness naturally. Even though open communication was limited, this did not appear problematic. Other families struggled more with these dynamics. Practical implications include continuing meaningful family activities - adapted to the limitations of illness, doing activities that foster open communication, using humor, and involving children in the medical process. When emotional attunement does not arise naturally, supportive interventions such as family therapy may help strengthen this.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe would like to sincerely thank all participants for sharing their experiences with us during their cancer journey. We thank Beatrijs Lens for initiating this research line on families, the therapists of the Helen Dowling Institute for their assistance in the recruitment of participants and Hanneke Beenackers, Margreth Baks, Mahmoed Chamany Zadeh, Anouk Brekhof and Anke Geerts for conducting the interviews.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eML designed the study. GZ organized data collection, carried out the thematic analysis and drafted the first version of the manuscript. HB was actively involved in analysis and revising the manuscript. MS and ML helped to revise the manuscript. All authors agreed with the final analysis and interpretation.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study is funded by Rotary op Seyst, a fundraising organization that made this research possible.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committees of the Ethical Review Board of Tilburg School of Social and Behavioral Sciences, the Netherlands (RP1049), and\u0026nbsp;the principles of the revised Declaration of Helsinki. Informed consent was obtained from all individual participants included in the study. Participants signed informed consent regarding publishing their data.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData availability\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets generated and/or analyzed in the current study are not available publicly as eligible patients were informed before start of the interviews that their data would be stored securely and confidentially.\u003cbr\u003e\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eVisser A, Huizinga GA, van der Graaf WTA, Hoekstra HJ, Hoekstra-Weebers JEHM. The impact of parental cancer on children and the family: a review of the literature. 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European Journal of Developmental Psychology. 2016;13:313\u0026thinsp;\u0026ndash;\u0026thinsp;24. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1080/17405629.2016.1154035\u003c/span\u003e\u003cspan address=\"10.1080/17405629.2016.1154035\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePhillips-Salimi CR, Robb SL, Monahan PO, Dossey A, Haase JE. Perceptions of communication, family adaptability and cohesion: a comparison of adolescents newly diagnosed with cancer and their parents. International Journal of Adolescent Medicine and Health. De Gruyter; 2014;26:19\u0026ndash;26. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1515/ijamh-2012-0105\u003c/span\u003e\u003cspan address=\"10.1515/ijamh-2012-0105\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBraun V, Clarke V. Thematic Analysis: A Practical Guide. SAGE Publications Ltd; 2021;1\u0026ndash;100.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMcDougall E, O\u0026rsquo;Connor M, Howell J. \u0026ldquo;Something that happens at home and stays at home\u0026rdquo;: An exploration of the lived experience of young carers in Western Australia. Health \u0026amp; Social Care in the Community. 2018;26:572\u0026ndash;80. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1111/hsc.12547\u003c/span\u003e\u003cspan address=\"10.1111/hsc.12547\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLanger SL, Brown JD, Syrjala KL. Intrapersonal and interpersonal consequences of protective buffering among cancer patients and caregivers. Cancer. 2009;115:4311\u0026ndash;25. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1002/cncr.24586\u003c/span\u003e\u003cspan address=\"10.1002/cncr.24586\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDewan M, Gorman J, Hayes-Lattin B, Lyons K. Open Communication and Physical Intimacy in Young and Midlife Couples Surviving Cancer Beyond the First Year of Diagnosis. ONF. 2021;48:669\u0026ndash;79. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1188/21.ONF.669-679\u003c/span\u003e\u003cspan address=\"10.1188/21.ONF.669-679\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Table 2","content":"\u003cp\u003eTable 2 is available in the Supplementary Files section.\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"supportive-care-in-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jscc","sideBox":"Learn more about [Supportive Care in Cancer](https://www.springer.com/journal/520)","snPcode":"520","submissionUrl":"https://submission.nature.com/new-submission/520/3","title":"Supportive Care in Cancer","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Psychosocial, family functioning, parental cancer, autonomy, connectedness, communication","lastPublishedDoi":"10.21203/rs.3.rs-8396001/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8396001/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003ePurpose\u003c/h2\u003e \u003cp\u003eParental cancer can significantly impact family dynamics, particularly for adolescents and young adults (AYAs), who face the developmental task of balancing autonomy and connectedness. As cancer incidence rises globally, more AYAs are confronted with the challenges of parental illness. While most research focuses on individual psychological outcomes, less is known about how families function as a unit under such stress. This study aimed to gain deeper insight into family functioning, with a specific focus on autonomy, connectedness, and communication, in the face of parental cancer.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eWe conducted an exploratory qualitative study using thematic analysis. Semi-structured in-depth interviews were conducted with 8 families (13 parents, 14 AYAs) in which one parent had been diagnosed with cancer. The interview design included separate interviews with parent(s), child(ren), and a joint family interview.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThematic analysis yielded three main themes: \u003cem\u003eChildren\u0026rsquo;s struggle between personal space and family life\u003c/em\u003e, \u003cem\u003ebarriers and opportunities in family communication\u003c/em\u003e, and \u003cem\u003eredefining connectedness\u003c/em\u003e. These themes illustrate how families attempt to balance autonomy and connectedness, and the role of communication in this.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eFamilies facing parental cancer develop different ways to balance autonomy and connectedness. In some families, strong emotional attunement naturally supported this balance, even in the absence of open communication. Others struggled more with these dynamics. Practical strategies such as maintaining meaningful activities, doing activities that foster open communication, humor, and involving children in the medical process can support family resilience. When emotional attunement does not arise naturally, family-based interventions may help strengthen these processes.\u003c/p\u003e","manuscriptTitle":"Navigating family life in the face of parental cancer: a qualitative study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-01-22 12:31:54","doi":"10.21203/rs.3.rs-8396001/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-02-19T17:35:30+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-02-19T05:47:41+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-02-15T21:49:02+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"97931527613434192729547027212437143693","date":"2026-02-13T21:27:48+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"209938404086364847915303694942154241327","date":"2026-01-21T05:00:37+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-01-21T00:05:26+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-01-21T00:03:13+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-01-07T11:06:05+00:00","index":"","fulltext":""},{"type":"submitted","content":"Supportive Care in Cancer","date":"2025-12-18T13:20:03+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"supportive-care-in-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jscc","sideBox":"Learn more about [Supportive Care in Cancer](https://www.springer.com/journal/520)","snPcode":"520","submissionUrl":"https://submission.nature.com/new-submission/520/3","title":"Supportive Care in Cancer","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"45a67cd0-fa22-4d4d-91d9-2d128e2e17f9","owner":[],"postedDate":"January 22nd, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2026-04-27T16:08:10+00:00","versionOfRecord":{"articleIdentity":"rs-8396001","link":"https://doi.org/10.1007/s00520-026-10670-6","journal":{"identity":"supportive-care-in-cancer","isVorOnly":false,"title":"Supportive Care in Cancer"},"publishedOn":"2026-04-22 15:58:57","publishedOnDateReadable":"April 22nd, 2026"},"versionCreatedAt":"2026-01-22 12:31:54","video":"","vorDoi":"10.1007/s00520-026-10670-6","vorDoiUrl":"https://doi.org/10.1007/s00520-026-10670-6","workflowStages":[]},"version":"v1","identity":"rs-8396001","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8396001","identity":"rs-8396001","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}