The results of our research are presented in accordance with the research questions, which relate to communication, changes due to the parent’s cancer and thoughts on professional psychosocial support offers. Tables 2 and 3 present an overview of the themes and subthemes related to communication and changes.
Participant characteristics
A total of 17 individuals, comprising 11 females (65%) and 6 males (35%), participated in the study. The average interview duration was 35 min (range: 15–70 min). At the time of the interview, the age of the participants ranged from 15 to 35 years. The mean age of patients at their parents’ initial diagnosis was 15 years (SD 3.3 years). Two participants had experienced the loss of a parent at a younger age than 16, and three had lost their parent before they turned 20. In two cases, siblings participated in the interviews. This resulted in a total of 17 former adolescents from 15 different families being interviewed. The most prevalent diagnoses were breast cancer (29%), followed by leukaemia (18%) and skin, pancreatic, and colon cancer (each 12%). Table 4 provides an overview of the sample’s sociodemographic characteristics.
Communication
With regard to communication about parental illness, the study participants mentioned different structural aspects, such as how often they communicated and who they communicated with, as well as content-related aspects, such as medical information, changes in family life and worries. In retrospect, the majority of participants felt that they had been adequately informed about their parents’ diagnosis during adolescence. However, some expressed the sentiment that crucial information had been withheld from them, and they suspected that their parents had wanted to spare them. In the vast majority of families, parents take the initiative to inform their children about the cancer diagnosis themselves.
I understood that she was ill and that it could be dangerous, but I never knew the smaller things. (…) I just did not know some things and I do not know if I truly wanted to know them, but in retrospect, I was missing a lot of information. (I03, female, parent died of cancer)
In many cases, conversations about cancer within the family occurred around the time of a doctor’s appointment or treatment. In families where communication was limited, the interviewees indicated that their parents either withheld information or were reluctant to discuss their illness. In addition, sometimes the young people themselves did not dare to start a conversation because they felt insecure or did not want to burden their parents.
Parents, other family members and friends were frequently identified as individuals with whom the interviewees discussed their parents’ cancer diagnosis, whereas teachers, psychologists and other healthcare professionals were mentioned less frequently. The most common topics discussed among family members in relation to cancer were diagnosis, prognosis and treatment. Topics such as personal emotions, family dynamics or the prospect of bereavement have rarely been addressed in this context.
I would say it was mostly when something was coming up, so that we were always prepared (…) and so that we could understand why the person was not doing so well and that we could look after each other. However, otherwise, I would say there was not so much talk about whether it was a burden on us or not. (I13, female, parent survived cancer).
Cancer impact on the family
The reported changes that cancer brought to the family were very diverse and related to various factors, such as the family’s financial situation, the well-being of the parents, and above all, the family’s dynamics. One of the changes in the family that the interviewees experienced due to the parental cancer disease was the presence of other caregivers, e.g., grandparents, taking care tasks from the parents. Further changes were reported, including financial insecurities and difficulties in planning ahead, as well as extended periods of absence from the ill parent due to hospitalisation. The majority of the observed changes were associated with alterations in family dynamics. The interviewees described significant role shifts at the parental level, as well as behavioural changes in themselves. These included considerations such as avoiding burdening or infecting the sick parent with a virus and taking on more household chores than usual.
I brought food and kind of, yes, got blankets when she wanted a blanket or straightened the pillows (…). I kind of helped her when she wanted to go to the toilet. That kind of thing. In addition, just, yes, helped around the house, hanging out the washing, doing the dishes and stuff like that. (I05, female, parent died of cancer)
The participants reported a range of physical and psychological changes, including mood swings and weight loss, in both parents, particularly in the affected parent. The alterations in familial interactions were described in a heterogeneous manner. A number of participants reported that there had been a decrease in the number of arguments within the family unit and that the family had been committed to preserving harmonious relationships. In other families, a greater number of conflicts were observed, and the interviewees attributed this to puberty or changes in personality in the parent due to the side effects of the cancer or treatment. Often, positive changes that cancer brought to the family unit were mentioned, including a stronger sense of cohesion and an increase in joint activities such as taking walks together or family vacations.
And then, very quickly, we drew closer together, that was like, us against cancer. Therefore, unnecessary conflicts were avoided right away. (I01, female, parent died of cancer)
Cancer impact on the adolescents
The interviewees reported a variety of changes at an individual level, such as changes in communication behaviour with family members or friends, emotional changes and influences on lifestyle, school and future decisions. Experiences with school were found to be heterogeneous. For some interviewees, school was a source of support and welcomed distraction. In contrast, others talked about difficulties concerning school, especially problems with concentration.
I graduated that summer, and it was not a bad final grade, and I studied relatively normally for it and that was also a bit of a hold and provided stability. (I08, male, parent died of cancer)
The most frequently reported individual changes related to emotions and mental health. The foremost concerns were the potential for individuals to develop cancer, the possibility of cancer recurrence, the risk of parental death, and the concern for parental infection with the SARS-CoV-2 virus. Many participants reported feelings of sadness and distress and attempted to suppress negative thoughts and emotions related to cancer. In contrast, the interviewees also reported positive changes in their personal development, including increased strength and responsibility and a heightened sense of gratitude.
I wasn’t quite aware of how serious it actually was, and then I had moments where I kind of broke down and realised the severity, but then those feelings and thoughts also disappeared again. (I03, female, parent died of cancer)
Positive lifestyle changes, such as maintaining a healthy diet and hygiene or regular attendance at cancer screenings, were also mentioned. Hobbies, especially sports, are often referred to as resources. It appeared that meeting friends was important for them to take their minds off their parents’ cancer and enjoy themselves. However, some interviewees also mentioned that they spent more time at home with their parents and minimised their contact to lower the risk of COVID-19 infection. Some young adults also reported that their parents’ cancer diagnosis had an impact on their educational path, for example, by pausing university studies to move back home or choosing a university nearby.
Professional psychosocial support
Participant’s needs and wishes regarding psychosocial support encompass content-related preferences and practical considerations, such as the location or setting of the service and the individual providing the support. Approximately half of the participants had not received any professional psychosocial support during adolescence when their parents had cancer. Four participants were offered a psychosocial counselling programme for families, with individual appointments scheduled. Additionally, four participants received outpatient psychotherapy. However, three of them sought psychosocial support only a few years after their family had dealt with the disease. In response to the question regarding the type of support that is now considered helpful, the majority of participants cited peer-group sessions or settings that allow for personalised choices. The participants expressed a preference for a setting that facilitates the selection or combination of family sessions, individual sessions, and group sessions, with these sessions being facilitated by a psychologist, a physician, a neutral/external person (not a family member or friend), or a teacher. The location preferences of the subjects in this study varied between a neutral place, a hospital or counselling site, or a school. The present study revealed that face-to-face meetings were considered more favourable than online meetings. Only one of the participants replied that he would not want professional psychosocial support at all.
I think what would have helped me would have been to talk to people of my age. Some kind of offer, because you just did not talk about it with your friends because (…) you never had the feeling that they could understand what was going on. (I11, female, parent died of cancer)
The range of topics for which the participants expressed a desire for support included information about cancer and treatment, as well as the potential changes that cancer might bring to families. Other areas of concern included emotions, coping strategies and the possible death of the parent. However, the most significant theme was the opportunity to share their experiences with others. In terms of the group setting, the majority of interviewees expressed a preference for active elements, such as joint activities or creative components, to enhance the atmosphere. Furthermore, some participants expressed a desire for guidance on internet content, books or brochures. A lack of information about available services and the difficulty involved in accessing them were identified as key obstacles to utilising support services. It is the opinion of the participants that the most effective methods of informing adolescents about support offers and encouraging them to engage are postings, flyers, a direct approach through healthcare personnel and, most importantly, parents as gatekeepers. The interviewees also stated that support offers should ideally be initiated at the time of the initial diagnosis and should continue throughout the disease process on a regular but voluntary basis.
The participants of the study also specified their wishes for support, with a particular focus on the roles of parents and the school. The expressed desires included greater involvement from teachers and the utilisation of professional support by parents themselves.
Advice for adolescents with a parent with cancer
When asked to offer advice to young people who have recently been affected, respondents provided a wide range of recommendations relating to how to deal with the situation individually or ideas on how to communicate and deal with parents. It is important to take time to process the situation, talk to others about it, especially about how you feel, ask questions, seek support if you feel like it, do not hide your worries and express your needs, spend time with your parents and keep in touch, try to find something positive in this situation, and most importantly, encourage your parents to seek psychosocial support themselves.
Talk to someone who has an open ear. If you’re in a very bad state, do not be afraid to get professional help and, above all, advise the parents to support themselves, because I think the worst thing for a child is to know that the parents are not well. (I14, male, parent survived cancer)