Siblings of children diagnosed with cancer: being faced with a moral dilemma

ABSTRACT

In this study, we explore how siblings of children diagnosed with cancer describe the implications of cancer experience in interaction with other young people. Seven focus groups were performed with 30 siblings, 14–23 years at the time of study. Data were analysed using inductive thematic analysis. We applied the theoretical framework of ecological system theory and sociological perspective of childhood. Two themes were identified: family relations and maintaining normality. Family relations covered experiences of loneliness, neglect and changed family relationships. Siblings described being faced with a moral dilemma, where, on the one hand, it was difficult to handle the clash of being aware of their parents’ struggle and the severity of the illness; and on the other hand, refraining from claiming attention and support, resulting in experiencing loneliness and unmet needs. Maintaining normality involved descriptions of a strive for ‘normality,’ where the brother’s/sister’s cancer didn’t dominate. The results show how a sister’s/brother’s cancer disrupts the family system and the relations between microsystems, including school and friends. Young siblings should be recognized as independent agents, who have rights to be listened to. The health care system should create possibilities for siblings to express their own needs and provide appropriate support.

KEYWORDS:

• Childhood cancer
• psycho-oncology
• psychosocial
• siblings
• support

Introduction

The birth of a brother or sister is the start of what for many people their longest individual relationship, a relationship that can be characterized by anything from love and friendship to hostility and rivalry (Dunn, 2007). A serious illness of one sibling can change the other sibling’s life (Deavin et al., 2018; Long et al., 2015; Rostila et al., 2017). For example, siblings have been found to experience a range of strong feelings in relation to their brother/sister’s cancer diagnosis, including feelings of loss, fear, helplessness, insecurity, loneliness, marginalization, anger and guilt (Alderfer et al., 2010; Nolbris et al., 2014; Patterson et al., 2004; Silvén Hagström & Toft, 2019; Wilkins & Woodgate, 2005; Woodgate, 2006; Yang et al., 2016). Research over the last decade shows that siblings of paediatric cancer patients are a vulnerable group with an increased risk of somatic, social and psychological problems (Long, Lehmann, et al., 2018; Weiner & Woodley, 2018). Moreover, findings of previous studies show that siblings of children with cancer frequently report unmet needs related to psychosocial support, cancer-related information and treatment involvement (Lövgren et al., 2016; O’Shea et al., 2012; Patterson et al., 2004; Steele et al., 201; Tasker & Stonebridge, 2016; Toft et al., 2019).

Although a number of studies have focused on the psychosocial impact on young siblings of children with cancer, there is still a need for studies in the field (Long, Pariseau, et al., 2018). Specifically, there is a need for research grounded ‘in theoretical models, improving research design and methodology’ (Alderfer et al., 2010). Trauma theory, a trauma-informed approach to families, in this situation is an important and also a well-used approach (Alderfer et al., 2010; Cutuli et al., 2019). Still, however, we have limited evidence on effective ways of improving siblings’ adjustment and psychological well-being (Guan et al., 2021). Indeed, the situation of siblings is complex and, to inform practice, there is a need to investigate it from different theoretical perspectives (Alderfer et al., 2010). In this study, we applied an integrative theoretical framework using an ecological system theory (Bronfenbrenner, 1979) and a sociological perspective of childhood (Qvortrup et al., 2009), with the purpose to get a broader understanding of the siblings’ situation when a brother/sister is diagnosed with cancer in childhood. The family is the most important context for a growing child. It influences the child and correspondingly the child influences the family. To view family as a system is a frequently used theoretical approach in the public mental health research, as it captures the interrelated aspect of the family (Eriksson et al., 2018; Parrish, 2014). But the importance of acknowledging a child as an individual has also been stressed during the last decades. This is expressed in the United Nations Convention of the Right of the Child (UNCRC, 1989) stating that it is the right of the child to play an active part in decisions concerning them. The combination of these two theoretical perspectives makes it possible to discuss the results in a holistic and interactive way.

The aim of this study was to extend the knowledge about the challenges faced by the young siblings of children diagnosed with cancer. The research question was as follows: Expressed in their own voice, how do siblings describe the implications of the cancer experience in interaction with other young people who had similar experiences?

Theoretical framework

Ecological system theory

The ecological system theory was developed by Urie Bronfenbrenner (Bronfenbrenner, 1979). As a development psychologist, he stressed the importance of seeing the development of a child in a social context. Using concepts from the general system theory (Von Bertalanffy, 1956), Bronfenbrenner developed a structure for human life. The theory describes human life as interrelated systems on different levels that interact and affect each other. Brofenbrenner labelled the different layers in the system as microsystem, mesosystem, exosystem and macrosystem.

The microsystem includes an individual and people, but also the processes in the environment where the individual has a direct contact with. The mesosystem is a system of microsystems, the relationship between microsystems. The exosystem is the system outside the mesosystem where the individual is not an active part, but where the system activities affect the individual or the individual affects the system. The macrosystem represents the social and cultural values of the microsystem, mesosystem and exosystem. These could be different in different countries as well as within countries as socioeconomic status, ethnicity, religion and subculture alters within societies.

Later in life, Bronfenbrenner added a fifth system labelled as the chronosystem, referring to time (Bronfenbrenner, 1992). The chronosystem consists of all the environmental changes that occur during the individual’s life, including life transitions and historical events.

Bronfenbrenner underscored that the ecological systems are important in the study of children, to understand children’s development. The ecological system theory could be used as a frame with the possibility to also use other theories and perspectives.

The sociology of childhood

Rights of a child, as a part of the Universal Declaration of Human rights (United Nations [UN], 1984), have been highly acknowledged during the last 40 years, also expressed by the UNCRC that was launched in 1989 (UNICEF, 1989). Parallel with that, a new perspective was developed within sociology (James & Prout, 1997). This perspective emphasizes child and childhood as culture-dependent concepts that differ between contexts, historical as well as cultural. Childhood is viewed as an important part of the life course in itself and not just a transition into adulthood. Adopting a child perspective in the context of childhood cancer is motivated by the fact that the majority of siblings are under the age of 18 years when their sister/brother receives the diagnosis.

Agency is a key concept within this perspective (James, 2011). This implies seeing the child as a subject and an agent by its own, who participates in the construction of one’s life, the lives of others and the society. Although children in vulnerable situations could be seen as victims, they are also active agents trying to get a hold on their world and what is happening to them.

Participation is another key concept and also something the UNCRC stresses, by emphasizing the right for a child to participate in decisions affecting their life. Children are seen as both vulnerable and competent, and although children need care and protection, they need the opportunity to participate in matters that concerns them.

Material and methods

Participants

This study was based on focus group interview data from 30 Swedish-speaking siblings, aged 14–23 years at the time of the study (median age was 18 years), with a sister/brother diagnosed with cancer in childhood (<18 years). A total of seven focus group discussions were performed by TT or ALN/UF. Demographic characteristics of the participants in each focus group are presented in Table 1. The majority of participants (n = 28, 93%) were under the age of 18 years at the time when the sister/brother received the cancer diagnosis (range: 3–20 years). One participant was 18 years old and one was 20 years old at the time of diagnosis.

Table 1. Demographic characteristics of the participants in the focus groups.

	Group 1 (n = 4)	Group 2 (n = 6)	Group 3 (n = 7)	Group 4 (n = 3)	Group 5 (n = 10)	Group 6 (n = 4)	Group 7 (n = 3)
Gender	3 female 1 male	3 female 3 male	3 female 4 male	3 female	2 male 8 female	3 female 1 male	3 female
Age at study	14–15 years	15–16 years	17–20 years	19–22 years	18–23 years	20–22 years	15–22 years
Age at the time of the brother’s/sister’s cancer diagnosis	6–13 years	3–14 years	9–20 years	12–14 years	6–15 years	6–15 years	12–14 years
Time since diagnosis, years	9–2 years	2–13 years	0–8	5–9	5–15	6–15	3–9
Cancer diagnosis of ill sibling	Leukaemia/lymphoma: 3 Other: 1	CNS tumours: 4 Leukaemia/lymphoma: 2	CNS tumours: 3 Leukaemia/lymphoma: 2 Other: 2	CNS tumours: 1 Other: 2	CNS tumours: 4 Leukaemia/lymphoma: 3 Other: 3	CNS tumours: 1 Leukaemia/lymphoma: 1 Other: 2	Leukaemia/lymphoma: 1 Other: 2
Bereaved participants	0	0	0	1	2	0	1

Notes: Participants in groups 6 and 7 (n = 7) also participated in group 5. One sibling participated in four focus groups (groups 4, 5, 6, 7). CNS, central nervous system.

Participants were recruited using purposive and convenience sampling techniques. The Swedish Childhood Cancer Fund helped by disseminating information about the study and allowing the group discussions to take place at events organized by the fund. The discussions were held in three different locations: three groups at a camp exclusively for siblings (Groups 1–3), one group at the Swedish Childhood Cancer Fund’s office in Stockholm (Group 4) and three groups at a conference for young people diagnosed with cancer and their siblings arranged by the Swedish Childhood Cancer Fund (Groups 5–7). Siblings could participate in more than one group discussion, as shown in Table 1. For example, one sibling participated in four focus groups. This sibling participated in Stockholm (Group 4) and also in three groups at the conference (Groups 5–7), where she was working with and assisted in the recruitment of participants to the discussions held there. The camp/conference programme included parallel sessions/events and the possibility to participate in the focus group discussions were scheduled as part of the programme. All siblings who showed up and expressed interest in participating were invited to participate.

Focus group discussions

The study had an inductive approach with the aim of exploring the siblings’ own experiences of having a brother or sister diagnosed with cancer as expressed in interaction with other young people who had similar experiences. Focus groups were considered a reasonable method congruent with this aim based on the notion that the group interaction encourages participants to explore and clarify individual and shared beliefs, opinions and perspectives (Peterson-Sweeney, 2005). Focus groups counteract the power imbalance between an adult interviewer/moderator and a young individual, providing a supportive environment to exchange experiences (Freeman et al., 2001; Lange & Mierendorff, 2009; Peterson-Sweeney, 2005). Moreover, group discussions with peers are a familiar setting for children and young people, for example, through school experiences. Furthermore, taking part in other young people’s memories and experiences may encourage the participants to express their own opinions and trigger further reflection (Lange & Mierendorff, 2009). For these reasons, focus groups are a common qualitative research technique for understanding the experiences of siblings of children diagnosed with cancer (Alderfer et al., 2010).

Discussions were led by a moderator, who was either a social worker (TT and UF) or a licensed psychologist (ALN). Before each discussion, the participants were reminded by the moderator about the purpose of the study, that participation was voluntary, and the possibility of withdrawing at any time. In the present study, the moderator started the discussions with different questions but the discussions developed rather similarly and were experienced by the researchers as free and lively. As custom for focus groups, the participants individually answered the moderator’s questions but were encouraged to talk and interact with each other. The discussions lasted for about 40–60 min, were audio recorded and transcribed verbatim.

Analysis

We performed an inductive thematic analysis, following six phases described by Braun and Clarke (2006). Phase 1: TT read the transcripts while simultaneously listening to the audio recording to ensure the transcripts’ validity and become even more familiar with the data. In addition, EH and UF read the transcripts closely. Phase 2: TT and UF performed the initial coding by generating meaning condensations individually. The condensations were then discussed. Phase 3: TT and UF collated the codes into preliminary themes. TT and UF discussed the analysis and different interpretations thoroughly to make the process reliable. Phase 4: UF returned to the data. The focus was on ensuring coherence within the themes and check that the themes represented the data. The themes were reviewed to establish what they were about and how they corresponded to the research question. Phase 5: The final themes were refined, and each theme was defined and named. Phase 6: The last step before producing the report was applying the selected theoretical frameworks to gain a deeper understanding of the results by UF. The final themes and conclusions of the results were conducted through discussion among all authors.

Trustworthiness and transferability

The invitation to the focus groups emphasized that we welcomed all kinds of experiences of being a sibling to a child with a cancer diagnosis. If any opinion or participant dominated the discussion, the focus group leader interfered to allow for different opinions of other speakers.

Trustworthiness in the analysis was attained by several researchers independently analysing the data as well as performing the discussions. Furthermore, to ensure trustworthiness we have strived to have support for statements as well as interpretations throughout the data. That meant that the focus group leader regularly moved from parts to the whole and vice versa to validate the interpretations made.

Most of the participants were young people who voluntarily attended a camp or a conference explicitly to share their experiences with others, but also to take note of others’ experiences. There is a limitation for the transferability of the findings to other groups of siblings. Demographic characteristics of the siblings (for example, gender and age) as well as cancer diagnosis and survival of the ill child varied between participants, which supports that even if these results are not countable for all siblings of children with cancer they are likely to reflect the experiences of many other siblings in similar situations (Kvale & Brinkmann, 2009; Nolbris et al., 2014).

Ethics

Participation was voluntary and the possibility of withdrawing at any time was communicated to the participants both in writing and by the moderator before starting the focus group discussion. The written information included a description of the aim of the study, the aspects of voluntary participation, the possibility to withdraw at any time, the confidentiality of the handling and presentation of data, the participation may evoke distressing thoughts and contact information to the responsible researcher. All participants provided written informed consent. Ethical approval was obtained from the Regional Ethics Committee Uppsala, Sweden (2014/251).

Results

The participants described the experience of being a sibling to a child with cancer as traumatic, using expressions as ‘everything turned upside down,’ ‘a bomb’ ‘nothing is the same  …  there is a before and after,’ which is in line with an earlier research using a trauma-informed approach. In this study, we instead explored the siblings’ experiences focusing on their expressed thoughts, feelings understood within a framework of eco-systemic theory and a childhood sociological perspective. The results are presented in the following two themes: family relations and maintaining normality, each with four subthemes, see Table 2.

Table 2. Presentation of themes and sub-themes.

Theme	Sub-theme
Family relations	Finding yourself in the margin
	Closer or further apart to the family
	Altered sibling relationship
	A moral dilemma
Maintaining normality	Keep a distance to the cancer
	School as a free zone or an arena for stigma
	What is a good friend?
	Ambivalent to information

Family relations

This theme includes descriptions of feeling lonely and being neglected, and that the relationships of the family, including the sister/brother with cancer, had changed. Moreover, siblings described how they had been faced with a moral dilemma, where it had become difficult to handle the situation’s gravity on the one hand and the loneliness they experienced and the unfulfilled needs on the other.

Finding yourself in the margin

The cancer and its treatment changed the siblings’ daily lives in several ways. Many described feelings of loneliness and neglect. At times, the risk of an infection in the ill sister/brother prevented them from meeting friends, which added to the feelings of loneliness. Furthermore, siblings described a feeling of being left alone to cope with their feelings.

It doesn’t matter how old you are, I mean younger or older than the sister/brother who is ill, it’s the jealousy, the loneliness and at the same time you have your own feelings, anxiety, anger, sadness that no one cares about. No one asks.

One sibling, of preschool age when his brother was ill, expressed that he could back then not understand why the brother got all the attention, and even wished that he himself could get cancer. The experience of neglected needs and never having the parents’ full attention evoked emotional reactions. Several siblings expressed an understanding that increased familial responsibilities were necessary in a situation like this. For example, one sibling explained that it was not a problem for him to, for example, stay home from school with his ill brother if the parents had to work or if the brother got a favour: ‘No, to me it was because of the cancer that he got all the attention. To me it’s crystal clear.’

Closer or further apart to the family

The illness influenced the relationships in the family, but the nature of this influence differed. Along with the cancer experience, some siblings experienced an increased distance to the family as a whole, while others experienced an increased family cohesion. ‘I feel I’ve actually got closer to my family.’

Some, particularly the older siblings, described how they actually avoided the family, by not visiting the sister/brother at the hospital or by seldom being at home. However, the participants describe that the relationship was changing over time. Some of those who had chosen to distance themselves were now in a process of getting close to their family again. They described it as a new, adult relationship with their parents and that they, as a family, had finally started to talk about what they had been through.

Altered sibling relationship

As a part of changing family relations, the relationship between the siblings had also changed. The implications of this changed relationship differed between the participants, partly because the current health- and treatment status of the sister/brother varied. Those who had a sibling still in active cancer treatment generally pictured the cancer as a temporary event: when the treatment was completed, things between them would go back to normal. But some of the siblings for whom a longer time had passed since their sister/brother had been ill expressed that the situation had become even worse when the sister/brother was free of cancer. Life did not return to what it used to be due to, e.g. residual health problems, and the relationship with the sister/brother they had before the diagnosis did not return. ‘What you got back was a different brother.’ Personalities, relationships and behaviours had changed. Participants even expressed a feeling of missing the bickering.

Me and my sister we like fought all the time [before the cancer], it was a fight over everything. … no, it wasn’t possible to fight with her again, she had tubes everywhere, infusion stands / … / I’ve lost so much of my relationship with her.

A moral dilemma

In the discussions about loneliness, the emphasis was on familial relationships. An experience, that was new to the siblings, was seeing their parents severely distressed, and the participants found this difficult to handle. In particular, it was painful and stressful to hear parents express their worries about the illness possibly being fatal. Siblings described how they had to grow up when their brother/sister had received the diagnosis. The parents were occupied with caring for the sick brother/sister. A common experience was that the parents disappeared – often both physically and mentally. ‘Everything was turned upside down. From having a family; mum, dad, a sister, to a situation with no one there. You must not be seen, you’re supposed to be perfect.’

Siblings acknowledged that their parents were in a stressful situation, and how the parents had acted was seldom criticized. Being well-aware of their parents’ struggle and of the severity of the illness, siblings felt they had to refrain from claiming care and attention for themselves. The clash between an understanding of the situation’s gravity on the one hand and the loneliness and unfulfilled needs on the other elicited feelings of shame and guilt, and this clash was expressed as a moral dilemma.

You can’t ask someone for attention because you’re feeling bad / … / or something is going wrong. You have to deal with everything yourself. Even with things you can’t deal with. It’s like / … / if I say something about it, I’ll draw the attention to myself.

Only in one group it was mentioned that ‘someone ought to tell the parents that siblings also need care and attention.’

Maintaining normality

This theme includes descriptions of a strive for normality where the brother’s/sister’s cancer didn’t dominate and school was considered as an important social context. School could serve as a free zone where a normal life could be upheld, but as also a context where siblings could encounter stigmatization. This theme also comprises descriptions of what constitutes a good friend and the need of support from close friends can vary much, as well as descriptions of how they had conflicting needs and responses to the information provided.

Keep a distance to the cancer

As mentioned above, the cancer diagnosis broke down the world when the siblings knew it. To maintain their old world, the world as they knew it, they strived for normality. This demanded them to keep a distance to the cancer event and its implications to maintain normality as far as possible. A recurrent description was that their world was split into two: a free zone of normality and a world where cancer dominated. Several siblings used ‘bubble’ as a metaphor for living in parallel worlds. Siblings moved back and forth between these worlds.

It could be someone who phones, something to do with that cancer again, you open the bubble and so you go out and live in that world for a time and then the bubble opens and you go and then you forget everything.

At times the two worlds collided, and siblings reacted with irritation or anxiety. However, for some of the siblings the only world that existed was the one they had constructed where there were no room for the cancer. Avoiding visits to the sister/brother at the hospital or by seldom being at home when the brother or sister was present were the strategies used by some of the siblings. To move out from home was mentioned among the older siblings as a strategy to maintain a new normality. Others described that a lack of a connection between the parallel worlds had negative consequences. When nobody in the free zone knew about the illness, and thus nothing about the feelings and thoughts of the sibling, it added to feelings of loneliness.

In general, the siblings described this split into two worlds as a functional way of coping with the stressful situation, and a possibility of maintaining normality. The ongoing, familiar matters of friends and school strengthened the feeling of normality. However, this split in parallel worlds could be delaying the reactions, which when they finally came were strong: ‘ … still I believe it was quite good just then but as time passed it wasn’t so good, when it did begin to let slip a lot came all at once.’

School as a free zone or an arena for stigma

School – portrayed as a central social context for the siblings – was described as a refuge where normal life could be upheld, but also a context where stigmatization could take place. However, the stability of normal life at school was easily shattered. Siblings described that while at school they wanted to avoid thinking about the illness but questions from peers reminded them and endangered the free zone. Some siblings guarded this free zone at school by not informing teachers and peers about their sister’s/brother’s illness:

No, but I think that, because they know about it they as it were start to treat you a little differently, it’s mostly because of that / … / like perhaps feel sorry for you or something like that, I would rather not, I want to be as I am, as it was before.

When siblings chose not to inform the school about the illness of the sister/brother, the teachers could not understand the siblings’ reactions, including concentration problems, anxiety, frequent absence and impaired performance. Therefore, some siblings, particularly the younger ones, expressed the importance of informing school. For them it was important that the teachers knew about their absence, concentration problems and emotional reactions: ‘But so Mum has always been very clear about informing / … /’cos she knows I find it hard to concentrate in any case, and then it’s … yes, I wasn’t taking part in the lessons even though like I sat there.’ One sibling even had a positive experience of giving a talk in school about the disease: ‘It was like scary, but felt good afterwards … you feel like they need to know and then it’s better to tell them yourself.’

Whether or not to inform the school about their sister’s/brother’s was not always a choice. A rumour can easily spread and instead of experiencing school as a free zone, some siblings felt that they were seen merely as ‘the person with a sister/brother with cancer.’ This was particularly a problem for the siblings whose ill sister/brother went to the same school. More than one sibling had changed schools for reasons associated with the cancer that could be interpreted as the children in question felt stigmatized by the way their schoolmates behaved.

What is a good friend?

Siblings described that close friends offered a space of normality, where the cancer was not important. Still, normality was hard to retain, even in relation to the siblings’ personal social world. The participants described mixed experiences from telling close friends about the cancer. Many siblings certainly appreciated the support friends could provide. However, what was considered as support differed between the participants. A good friend could be someone who distracted thoughts about cancer:

They can get you to think about other things for a while … so that you don’t only think about the sick one, which makes you feel bad. But it doesn’t always work, though it still means you can get away from it for a time.

Yet, a friend could also be someone to share the cancer experience with. Several of the siblings concluded that friends were important – but only if they had an experience of traumatic events by themselves, otherwise they were unable to understand the sibling’s situation: ‘but one’s friends, you can see they try to care, that is really try and feel sorry, but you know they’ll never understand, so after a while you put on an empty shell.’ Others expressed that it was sufficient that friends listened, they did not have to understand: ‘All you need is that they listen / … / perhaps they don’t have to understand, just listen, so you can talk about it and then get an insight oneself, when one talks.’ Others chose not to tell even close friends about the sibling’s disease, saying that they liked not to be reminded at all.

Ambivalent to information

The need of having access to as well as wanting to have knowledge about the cancer disease varied among the siblings. Some of them both wanted and had an access to medical information, and had been very engaged in their sister’s/brother’s illness and treatment right from the beginning. Others had avoided contact with the medical care, as knowledge also provoked the necessity to keep a distance to the cancer. Accordingly, the siblings considered the information to be both helpful and/either distressing. A few siblings had been offered to talk with the treating doctor, but had declined out of fear of what would be said: ‘No, then, I … first I was invited to talk with a doctor but then felt very frightened ‘cos I didn’t want to  …  I was afraid of getting to know something I didn’t want to know.’

Other siblings expressed that they had wanted to get more knowledge about the illness and its treatment than had actually been the case. Then again, one sibling, whose sister had died from her disease, was content with a doctor’s advice not to search for information on the internet. With hindsight, she indicated that she had not wanted to know that the illness was incurable:

When sis had died they said no one had survived this, so I asked why they hadn’t said that from the start. Would you have wanted to know that when you learnt that your sister had cancer, that it couldn’t be cured. We believed in any case that perhaps it would work. So it’s unnecessary information that one doesn’t always need to tell.

Discussion

By creating a space for young people to talk to each other in a group, we intended to open up for young people’s own perspectives on what it is like to have a sibling with cancer when you are a child yourself. Our results draw attention to siblings’ experiences of how a sister’s/brother’s cancer diagnosis affects family dynamics, with siblings experiencing an altered role as well as altered relationships in the family. The need for participation and to be recognized as independent agents was evident. Still, the siblings experienced to be marginalized, that they were left alone to cope with their feelings. The results furthermore show that young siblings of children with cancer need and struggle to maintain and/or return to a sense of normality through these difficult times. Splitting the world into two parallel worlds, where one was a free zone of normality, was described as one way to handle this.

In the participants’ narration of their reactions to the sibling’s cancer diagnosis, it is easy to recognize what Janoff-Bulman labelled as ‘shuttered assumptions’ (Januff-Bulman, 1992). Being a child themselves, the strong feelings the siblings experienced were too much for them to fully embrace. To maintain a ‘normal life’ it was important to distance themselves and not be completely absorbed by the implications of the sibling’s cancer. A common way to do was to create an alternate world where there was no room for the ill sibling’s condition. For some participants that world co-existed with the world including the cancer, whereas others seemed to more or less completely shut out the fact that the brother/sister had a diagnosis of cancer. The latter was described as an active struggle to shut oneself out from the family. Although that might be interpreted as a destructive behaviour, it could also be seen as an agency, an attempt to manage the situation in, at the time, the best possible way (James, 2011). The strategy to distance oneself from one’s family, the ill sibling and the context of medical care, thereby avoiding contact with the illness and its implications, might be effective for the time being. Previous results on siblings of individuals with eating disorders have indeed found avoidance to be both common and effective (Maon et al., 2020). Then again, as the participants in the study all attended either a camp or a conference focusing on cancer in childhood, as well as volunteered to participate in the focus group discussion, it is likely that they at the time of the focus group discussion were in a process of integrating the experience into their life (Januff-Bulman, 1992). This might be important since, in adult populations, avoidance has been put forth as central for the development and maintenance of psychiatric symptoms in general (Salters-Pedneault et al., 2004), implying that avoidance might not be adaptive in the long-term.

The results show that childhood cancer can be understood as an event that disrupts the family system, where the family is forced to adapt to radical new circumstances. New roles and organizations are required as the family for periods are apart, due to, for example, hospital visits. The relationship between the siblings is an important mesosystem within the microsystem (Bronfenbrenner, 1979), which transformed in response to the cancer diagnosis. According to the theory, systems are always thriving to seek balance in the system (Von Bertalanffy, 1956). The findings point at the shifting balance in the sibling relationship, for example, that mischief and fun were no longer possible and in some cases, the sibling became the care taker of the other (Bronfenbrenner, 1979). As reflected by the results, the illness and treatment could also entail the experience that the ill sister/brother gets a new personality. The relationship between the siblings thus needed to be transformed, and for some of the participants the change was something that they appreciated or at least accepted, whereas for others it was experienced as just a loss. As described by the participants, not just the physical relations are influenced, but also the emotional closeness. The siblings expressed that their needs were put aside and that new roles were put on them, making them feel a need to grow up. Moreover, the results show that it is not only the family system as a whole that is disrupted, but the entire system including the relations between the different systems (Bronfenbrenner, 1992), including school and friends. According to Bronfenbrenner, it is the mesosystem, i.e. the relations between microsystems, that ought to be in focus when a child is in a difficult situation as the role of dysfunction often originates from disharmony between microsystems (Garbarino, 1982).

The relationship between the sibling and the parents was also affected. A weakened relationship to the parents is common when a brother/sister is diagnosed with cancer (Weiner & Woodley, 2018). In our study, the siblings expressed that they miss their former relationship with the parents, but also the care and attention. The new situation had also implied a need to change their roles in a way that can be related to pseudo-parenting (Havill et al., 2019), that is, a role reversal where the child is forced to assume the role of an adult. The findings show that it is not just during hospital stays the siblings had to take care of themselves, but that they lacked support with homework and everyday life in general. The results furthermore show that siblings regularly take care of their sick brother/sister with cancer. There were participants who stayed home from school to take care of the ill sibling while the parents worked and who seemed to think of this as natural. Moreover, the feeling of dejection was evident among siblings and could be interpreted as a result of what we labelled as a moral dilemma (Statman, 1995), i.e. situations ‘where agents seem to be under an obligation both to do, and to refrain from doing, a specific act’ (Statman, 1995). On the one hand, the sibling wants to claim the right of care and support from the parents. On the other hand, the sibling is aware that they ought to put their needs aside and support the parents and the ill brother/sister. So, the siblings acknowledged the difficulties that their parents were faced with including the need to focus on the ill child, but still recognized that they as well had a need for them. To interpret this clash as a dilemma imply to acknowledge this as something which affects the siblings emotionally, creating a feeling of indecisiveness and helplessness (Statman, 1995). Feelings of being unimportant and forgotten in the family were also expressed by the siblings and can be understood in terms of grief (Nolbris et al., 2014), a phenomenon described in studies on families with a child with cancer (Woodgate, 2006; Yang et al., 2016) and other chronic illness or disabilities (Sharpe & Rossiter, 2002). Our impression is that the participants in our study did not believe that things could have been much different, for example, that they or their parents could have handled the situation differently. Moreover, feelings of guilt were mentioned as a reflection by those participants who had feelings of envy towards the ill sibling. Guilt over being well while the sibling suffers has been described in other studies (Nolbris et al., 2014), and might contribute to the siblings’ lack of demand for attention and care.

Having access to cancer-related information could be seen as a basic condition for participation and a base for agency (James, 2011; Long et al., 2015; O’Shea et al., 2012). Still, participation is more than having information (Hart, 1997). As pointed out by others, it is important to acknowledge the different appraisals and implications of the illness among the family members, and a quest for family-centred care is often expressed (Van Schoors et al., 2019). Still, as already been pointed out, the child might become invisible when there is a family focus (Coyne et al., 2016). We do not know whether the young people in this study have been taken part in family meetings, but none of the participants mentioned such meetings. Other studies have shown that even if the intention is to involve all the family members in family interventions, a lack of child focus is often experienced (Eklund et al., 2020). This raises the question that whether it is possible to have both a family and child focus (Coyne et al., 2016). Furthermore, some siblings in our study didn’t want any information as they felt they couldn’t handle it, and the act of rejecting could be interpreted as a form of effective action by some siblings (Hultman et al., 2017). It is important to acknowledge that rejection of information is not the same as not having access to information. Nevertheless, to involve the sibling in a dialogue about what, when and how to deliver information is encouraged.

School was highlighted as an another important social context and microsystem for the siblings. For some, school was a refuge and for others a strain. The difficulties some of the siblings had faced in school gave the impression that they had become stigmatized, for a few to the extent that they had to change school. Moreover, the results show different preferences with regard to being open or not about the sibling’s cancer diagnosis at school. This points to the importance of having a dialogue with the sibling over the situation at school including how the sibling would prefer to handle it and provide support as appropriate. To see participation as a dialogue that fits well with an eco-systemic thinking (Garbarino, 1982), which stresses the constant interaction between human beings (or within human systems).

In this study, we have interpreted the sibling’s situation as marginalized. Some of the siblings who wanted to participate fully in what was happening in their family and the ill sibling, experienced that it was not possible and not their right to know. For others, staying away from the ill sibling was a strategy to keep the illness at a distance, but it also meant feeling lonely and a lack of belonging in the family. In Sweden, there is a legal obligation for the health care to inform and support under-aged children if a parent has a serious illness (Hälso- och sjukvårdslagen, 1982). Unfortunately, there is no similar obligations when a sibling is ill, which is likely to be motivated by that task being assigned to the parents. Our results confirm what has been shown in previous studies (Kobayashi et al., 2015; Long et al., 2015; Yang et al., 2016) that parents of a seriously ill child have difficulties in focusing on all their children. Here, the health care system plays an important role to create possibilities for the siblings to express their own needs, not just worries about the ill brother/sister. Supported by the results of others (White et al., 2017), our clinical experiences are that, unfortunately, a lot of the information and support given to siblings focus on cancer treatment and worries and thoughts about the sick child. However, of late, activities and support focusing on the siblings’ own needs have been recognized by an NGO organization camp attented by some of our respondents. Further development of such activities as well as systematized and tailored sibling-support are encouraged.

On a macro-level, the sibling does not get any legal recognition as being next of kin to the ill child in Sweden. This could be seen as contradictory to the children’s rights as formulated by the UNCRC (UNICEF, 1989). The fifth system defined by Bronfenbrenner, the chronosystem, concerned the importance of time (Bronfenbrenner, 1979). The chronosystem certainly has relevance to our study as children’s right and the importance of both a child perspective (external, adult perspective on the child in a certatin situation) and a child's perspective (child’s own experiences and perceptions of the situation) have been inceasingly acknowledged during the last decades. The UNCRC provides a solid foundation for children’s participation in matters that concern them. Sweden, as most countries, has adopted the UNCRC and this was fully incorporated into legislation in 2020. Still, as reflected by our results, when it comes to having a seriously ill sibling, children are not recognized as independent subject actor/stakeholders.

Some study limitations should be noted. First, participants were recruited at peer-support events for siblings of children with cancer. The participants had thus themselves chosen to partake in settings where they meet others with similar experiences. It is possible that young siblings not attending such events do not experience the need to share experiences and might also experience challenges and support needs not covered in our findings. Furthermore, the interest and wishes of the participants very much guided the group discussions. Consequently, some specific topics were not discussed in depth, including whether the siblings experienced hindrance in relation to leisure activities and school while taking care of the ill brother/sister. Another limitation relates to the fact that some siblings participated in more than one group discussion. One risk is that the siblings who have already participated in a group discussion take a dominating role in the subsequent discussions, which might lead to the results being too influenced by their experiences. On the contrary, a positive note of participating in more than one group, is that this might provide the sibling a chance to process and reflect on his/her experiences in more depth. Although methodologically challenging, we agreed to allow all siblings who showed up and expressed interest in participating to participate. We found it ethically reasonable to have an open mind and to not decline siblings who showed up with the intention to participate. Of note, in the analysis, the authors (TT and UF) who worked close to the data could not identify by listening to the discussions or reading the transcripts who among the participants had participated in an earlier group discussion. Moreover, the number of participants differed between the groups (ranging from 3 to 10 participants). We aimed for four to seven participants per group, a somewhat smaller number than when conducting a research on an adult population. To aim for a smaller group was found apt as we were recruiting children and young adults (Peterson-Sweeney, 2005). Although the number of participants differed between the groups, we found the discussions in all groups to be free and lively and that all participants were active, also in the groups with a larger number of participants.

Conclusions

Using a system theory integrated with a childhood sociological perspective as an analytical tool, the results of this study highlight the interaction between the structure and the individual. The siblings described being faced with a moral dilemma, where it has become difficult to handle the situation’s gravity on the one hand and the loneliness experienced and unfulfilled needs on the other. The need for better psychosocial support to families and, in particular, to the siblings on how to cope with this dilemma is evident. The health care has a central role in providing appropriate supportive services. To meet the support needs of siblings, it is important that school as a central social context for the siblings is considered. The results underscore the importance of acknowledging children’s rights when a sibling has a serious illness and those young siblings should be included on their own terms, on their own means aligned with the children’s rights as formulated by the UNCRC. Moreover, the health care ought to be more aware of those young siblings of children diagnosed with cancer as care takers. This issue needs to be explored further in forthcoming studies. Another focus for research ought to be into what extent the siblings think that the health care professionals have tried to include them on their own means and not just as siblings to a sick child.

Acknowledgements

We thank all the participants for their valuable contributions to the study and the Swedish Childhood Cancer Fund for their help in recruiting participants for our study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by The Swedish Childhood Cancer Fund [grant numbers PR2013-0003, PR2014-0004].