“Invisible, you are letting go of a lot, and you would do it again”: a qualitative interview study of the existential thoughts, feelings, and agency of healthy siblings with a sister or brother in palliative care in Denmark

Abstract

Background

Having a sibling is one of the most significant relationships in life. Living with a life-threateningly ill sister or brother receiving palliative care affects the healthy siblings’ life in several ways. Healthy siblings often feel overlooked and neglected and withhold their thoughts, emotions, and fears to shield their parents or themselves, which may cause emotions of fear, anger, anxiety, and depression. Research is limited concerning existential dimensions of life in healthy siblings living with a sister or brother with a life-threatening condition, especially when it comes to research anchored in the healthy siblings’ experiences and voices.

Methods

In this phenomenological interview study, we explored how the healthy siblings express their existential thoughts, feelings, and agency. We conducted nine qualitative interviews with a total of six healthy siblings aged 10 to 21 years from September 2022 to April 2023. The interviews were audio recorded, transcribed verbatim, and analyzed using Max van Manen’s phenomenological approach. The findings were discussed using philosopher Axel Honneth’s theory, The Struggle for Recognition, as a structural framework.

Findings

We found that living with a sister or brother receiving palliative care entails a life with living costs and consequences that influence everyday life, requiring their healthy siblings to adapt and thereby affecting their developmental opportunities. The healthy siblings seem to be at risk of not receiving sufficient recognition, which may impact their self-confidence, self-respect, and self-worth. Free spaces serve as a way to divert from worries and difficulties, and as a space for achieving recognition for being oneself. Aligned care and communication are crucial for healthy siblings, as is experiencing a caring safety net.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12904-025-01858-4.

Background

Having a sibling is one of the most significant relationships in an individual’s life path [1]. Sibling relationships are among the longest-lasting relationships in most people’s lives, and unlike friends and partners, siblings are connected for life, making this relationship highly significant. Having and being a sibling is a fundamental aspect of life for most children and young people [2]. Around 90% of children and young people in Denmark have siblings [3]. Siblings play a crucial role in children’s development of personality, social development, and self-perception. Therefore, sibling relationships are important for the roles and reaction patterns that children develop and exhibit in adult life [4].

It is estimated that as many as 125,000 children and young adults under the age of 28 have a sister, a brother, or a parent who becomes seriously ill every year in Denmark [5]. When a child becomes seriously ill, the whole family is affected [1, 5, 6]. Parents must balance domestic tasks and pay attention to other children in the family while worrying and caring for the ill child. This often results in healthy siblings feeling overlooked and neglected, and withholding their thoughts, emotions, and fears to shield their parents or themselves, which may cause emotions of fear, anger, anxiety, and depression in the siblings [1, 7–9].

For cancer patients, studies have reported general principles for helping healthy siblings throughout all phases of the siblings’ illness and treatment [10]. These principles can be applied to other serious and life-threatening diseases.

Being confronted with the impending death and loss of a sister or brother and the constrictions a life-limiting condition entails forces their healthy siblings to relate to several ultimate, existential concerns and to struggle existential tensions following the confrontation with death and, for example, questions about justice and injustice [11, 12]. Growing up with a seriously ill sister or brother affects the healthy siblings into adulthood, and bereavement after losing a sister or brother may be long-lasting [8, 13, 14]. Healthy siblings may experience lower self-esteem, reduced personal maturity, and sleep problems [8]. A Danish survey concerning children, based on their parents’ responses, demonstrated that healthy siblings experience mental distress in relation to their sister’s or brother’s illness. 16% of these children exhibit symptoms of anxiety and depression. In the same survey, 60% of parents stated that the healthy child demonstrates an unnatural sense of responsibility towards the family. Half of the children in the survey hide their feelings from their parents, and almost one in four children isolate themselves socially. Finally, the children seemed to experience a deeper emotional impact from a sibling’s illness compared to that of a parent [15].

Children with life-limiting and life-threatening diseases are living longer nowadays, and more children are cured due to improved treatments [9]. Paradoxically, this entails that their healthy siblings and families are living with illnesses and experiencing their impact for a longer period, which tends to increase the risk of negative consequences [16]. Palliative care for children and youth targets children and families when a child is suffering from life-threatening, though sometimes curable, diseases. Children may receive palliative care due to cancer, hematological diseases, and likewise because of, for example, life-limiting neurological disorders, which may persist for many years [1, 9]. A significant part of palliative care for children, youths, and their families is to be aware of and address existential suffering and whether illness and impending death cause existential concerns in the sick child, the healthy siblings, or the rest of the family [9, 17].

Research about healthy siblings living with a sister or brother with a life-threatening condition is limited, especially when it comes to research anchored in the healthy siblings’ experiences and voices. Most of the scientific literature derives from the perspective of the parents [14, 15]. A newer review indicates that research concerning healthy siblings tends to focus on family functioning, social well-being, psychosocial well-being, and coping, respectively. Research on healthy siblings’ experiences is dated and primarily focuses on children with a sibling suffering from cancer [1]. Thus, the knowledge from this study is highly relevant to healthcare professionals as healthy siblings are often overlooked in healthcare settings [1, 7–9, 15, 18]. It is also of public importance, as the healthy sibling may furthermore be struggling in school, within their families, and in their everyday lives [19]. There may be significant differences between the parents’ and healthy siblings’ experiences regarding the siblings’ quality of life [1, 20]. This study focuses on elucidating the voices of healthy siblings by exploring their expressed thoughts, feelings, and actions to gain an in-depth knowledge of their life circumstances when living with a sister or brother in palliative care. This specific perspective is sparsely elicited within healthcare research [1, 14]. We apply an existential research perspective to attain a deeper understanding of the healthy siblings’ existential agency—how they interact meaningfully, relationally, and intentionally in relation to their life circumstances, which involve both their individual thoughts and emotions, as well as concerns about their surroundings.

Purpose

The purpose of this study was to qualitatively explore the existential agency and experience of being a young person living with a sister or brother receiving palliative care.

Preconceptions

We approach the topic from a humanistic, interpretative, health scientific perspective, acknowledging the significance and necessity of applying theoretical perspectives from both the human sciences and the social sciences to explore the present health scientific matter. Therefore, we draw from understandings within the scientific disciplines of philosophy, psychology, medicine, and sociology. Although the concept of palliative care and the existential aspects of life are acknowledged worldwide, we recognize that demographic, social, cultural, and religious differences may be decisive for the transferability of the findings. We are all clinicians with experience from clinical practice, and our clinical practices are embedded in Scandinavian and Western culture, and Danish society is considered one of the most secular societies in the world.

Methods

We conducted nine qualitative, semi-structured research interviews with six healthy siblings who were either living with or had lived with a sister or brother receiving specialized palliative care. In this study, we define existential agency as how they try to interact meaningfully, relationally, and intentionally in their lives. This interaction includes both their inner thoughts and emotions, as well as their social surroundings, life circumstances, and perceived demands from society. The concept of existential agency evolved through an emphasis on psychological underpinnings and empirical insights gleaned from the research interviews, which initiated the delineation of the concept. The theoretical foundation of existential agency stems from a combination of existential philosophy [21, 22], psychology [23, 24], and critical psychology [25, 26].

The healthy siblings were between 10 and 21 years old and were interviewed once or twice. In agreement with the palliative care team, all participants were to be offered a follow-up interview after the initial interview. This was fulfilled in all cases except one, where it was not possible to reestablish contact after the initial interview. We performed a phenomenological analysis inspired by Max van Manen and his interpretative, descriptive phenomenology, as this methodological approach is deemed appropriate for providing descriptions of the meaning of lived experiences through textual expressions of their essence [27]. Van Manen’s phenomenology is rooted in the field of pedagogy, in which pedagogy can be understood as activities such as teaching, parenting, or generally living with children, and that scientific knowledge should serve these activities [27]. The findings were discussed with Axel Honneth’s The Struggle for Recognition as a theoretical framework, in which Honneth argues that humans are driven by an inherent striving towards three types of recognition: love, respect, and social esteem. These forms of recognition are crucial to how humans maintain a positive relationship with themselves and to developing their identity [28].

Context, collaborations, and contact

We collaborated closely with a local palliative care team for children and youths to reach out to healthy siblings eligible to participate in the study. Initially, practical and ethical considerations were discussed with two contact persons from the palliative care team. Subsequently, the rest of the palliative care team was introduced to the study during an oral session, where clear instructions were provided regarding the inclusion and exclusion criteria, as well as the study in general.

The initial information about the study was provided to the families by the palliative care team’s chaplain, who was well-acquainted with the ill child, the family, and the healthy sibling. The parents then consented to be contacted by the first author via telephone for further information about participation and to establish a personal connection. These phone calls typically lasted about 30 to 60 min, and an initial visit at home prior to the interview was scheduled. During either these initial visits or subsequent phone calls, the healthy sibling consented to participate, too. Isabella, who was 21 years old at the time of the interview, provided consent on her own behalf.

The interviews were then scheduled according to the healthy siblings’ preferences in terms of time and place. All healthy siblings contacted for an interview accepted participation. Written information about the study and a description of the legal foundation were emailed to the parents and reviewed jointly on the day of the interview. The healthy siblings and parents were informed about confidentiality and the opportunity to receive psychological assistance if needed, as the last author is a clinical psychologist experienced in grief and crisis processes. Furthermore, the healthy siblings were assured that the first author would assist them if anything came up during the interview that they wanted their parents to know about. Finally, they were guaranteed that their participation would not influence the care or treatment of their sibling by the palliative care team.

Inclusion and exclusion criteria

To participate in the study, the healthy siblings had to be fluent in Danish, as it was pivotal that the researcher felt confident in understanding what they were expressing and vice versa. Siblings were excluded if they had a distorted perception of reality, severe cognitive challenges, or were suicidal, or if the palliative care team did not believe them to be eligible for an interview based on their professional assessments and knowledge of the family. The healthy siblings did not need to be biologically related to the ill sister or brother, but they had to experience a sibling relationship. This could, for example, involve siblings who are brought together as a result of their respective parents’ relationships. This study thus includes and acknowledges familial bonds beyond biological connections. There were no established age criteria due to the uncertainty of whether it was feasible to recruit participants, which emphasizes the palliative care team’s skills and knowledge of the families, as the siblings’ age alone could not exclusively indicate whether a child should participate. Inclusion ceased when the team was unable to recruit additional participants.

The study is based on nine semi-structured, qualitative research interviews with six healthy siblings aged 10 to 21 years. Geographically, they lived widely spread across Southern Denmark. All the healthy siblings had either lost or were living with a younger sister or brother in palliative care, and were all biologically related to their ill sister or brother. The names of the healthy siblings were pseudonymized during the transcribing process. The participants’ demographics are illustrated in Table 1.

Table 1.

Participants’ demographics, place of interview, total duration of the interview(s), number of interviews, and interview year

Name	Age in years	Gender	Relation to the sibling in PC	Sibling dead or still alive	Place of interview	Duration of interview(s) in total	Number of interviews	Interview year
Arthur	10	Male	Older brother	Dead	Home	59 min.	1	2022
Isabella	21	Female	Older sister	Dead	Home	166 min.	2	2023
Nanna	10	Female	Older sister	Alive	Home and outside	104 min.	2	2022
Maya	10	Female	Older sister	Alive	Home	91 min.	2	2022
Alba and Nora	13 and 10	Females	Older sisters	Alive	Home while drawing	126 min.	2	2022

Interviews

The first author conducted all nine interviews. The healthy siblings were allowed to decide the location of the interview themselves, and the interviews were conducted either in the healthy sibling’s home or, in one case, part of the interview was conducted while going for a walk. Two participants chose to be interviewed together. For all participants, except Isabella, aged 21, it was the case that the parents were present in the house but not during the interview(s). All interviews were audio recorded and transcribed verbatim by a student assistant. The interviews were conducted from September 2022 to April 2023. The interviewer used two different semi-structured interview guides: one for the first interview, which included an exercise, and another for the follow-up interviews [29–31]. The interview guide was developed for the present study and was also applied in a modified version for a similar, still unpublished, study we conducted on young relatives with a family member in hospice care. The interview guide was inspired by aspects of existential psychology and therapy and designed to capture the existential language and agency of healthy siblings without overly influencing the interviews [11]. The same interview guide was employed for all interviews, regardless of the participant’s age. Subsequently, the dialogue and probing questions were tailored to the age of the child or young person, as well as their level of abstraction. The interview questions were formulated as open-ended questions addressing elements and individuals of significant importance in the healthy siblings’ lives. Other questions explored their thoughts and experiences concerning care and communication. Prior to the present study, the interview guide had been tested on children aged 6–11 years in several focus groups in elementary schools, as well as in three focus groups with young people aged 15–16 years. The interview guides can be found in the supplementary material for the paper. The interviews lasted between 59 and 166 min in total if the healthy sibling was interviewed twice, with a mean of 58 min (Table 1). The interviews were initiated by inviting the healthy sibling to talk about when they first found out that their sister or brother was life-threateningly ill. Subsequently, the interviews were guided by questions regarding elements and persons of significant importance in their lives, thoughts, and experiences concerning care, support, and communication, and about whether they had considerations of a transcendent/spiritual/religious nature, and needs related to these. At the end of the interviews, they were presented with an exercise with cards featuring words like “death,” “soul,” “illness,” and “meaning”. They were encouraged to pick cards and describe what they thought each word meant and any associated thoughts, experiences, and feelings. Inspired by existential therapy, this method aims to elucidate the existential thoughts and concerns of the participants without influencing the wording of these too much [32–34].

Analysis

We performed a phenomenological analysis inspired by Max Van Manen’s phenomenology due to its applicability to provide descriptions of the meaning of the healthy siblings’ lived experiences through textual expressions of their essence. This approach was deemed appropriate for exploring and describing how healthy siblings act with existential agency while living with a sister or brother receiving palliative care [27]. Initially, the transcripts were read and re-read to become familiar with the data and to grasp the essence of the healthy siblings’ lived experiences. Subsequently, the transcripts were divided into units of meaning whenever the essence of the lived experience seemed to shift. This process elucidated structures that sharpened the essence of the healthy siblings’ lived experiences, and by reflecting, we intended to grasp the essence of these structures and elucidate the essence of the healthy siblings’ lived experiences. Through these analytical procedures, we established a connection with the healthy siblings’ lived experiences. These procedures were applied to all the transcripts, respectively. In the next step, themes were generated across the data set through an interpretative, hermeneutical process and interaction with the data. The themes were generated from the various thematic essences of experiences, giving meaning to or highlighting significances that illustrate the siblings’ lived experiences. The significance was evaluated by reflecting on whether the description of the healthy siblings’ lived experiences would remain unchanged without the theme or would lose essential meaning if the theme were omitted. The analytical process involved re-reading, re-writing, and re-reflecting to ensure the themes did justice to the healthy siblings’ experiences and provided a fair textual communication. The analysis was performed using NVivo version 14 (Lumivero, Denver, CO, USA).

Findings

The generated themes are presented in Table 2 and subsequently elaborated, anchored in the voices of the children through quotes.

Table 2.

Main themes with respectively three and two sub-themes from interviews with healthy siblings

Theme	Subthemes
1. Being	1.1 Living costs and consequences
	1.2 Difference and perceived normality
	1.3 Free spaces
2. Care and communication	2.1 Being available and listening – a caring safety net
	2.2 Aligned care and communication

Being

The theme of being and its three embedded subthemes illustrate how healthy siblings experience and navigate their life circumstances. These themes underscore the existential agency of the healthy siblings.

Living costs and consequences

Living with a sister or brother in palliative care entails personal costs and consequences in terms of sacrificing their own needs for the sake of their ill sister or brother. They have to pay attention to their sister or brother by, for example, staying home more often, enduring cancellations—especially during COVID-19—and quickly adapting in case of emergency hospital admissions. Isabella explains:

I have let go, or I have had to give up, a normal childhood because I was used to being at the hospital a big part of my childhood (Isabella, aged 21, lines 181–182).

This quote from Isabella illustrates her experience of sacrificing what she perceives as a normal childhood or the childhood she might have had. Isabella continues, clarifying that living with the costs and consequences of having a sibling receiving palliative care is not solely burdensome. It is a sacrifice she gladly makes to have her brother with her. She explains:

Because one thing is to say, ‘I’ll give up everything for my sibling,’ and another is to actually do it and to experience it in both body and soul. I have done that my entire life. In fact, that is the only thing I have done. And it has only made me love my brother more and more, even though the costs have sometimes been high. […] It is easy to say, but another thing to actually do it (Isabella, aged 21, lines 1018–1021, 1052–1053).

Isabella’s quote indicates that having a brother receiving palliative care appears to have reinforced her love for him. She has internalized a sense of meaningfulness in adjusting her life to accommodate him as her brother. She emphasizes that giving everything up for a sibling cannot be understood by merely thinking about it; it must be experienced. Some siblings have had to move or reorganize their home because of medical equipment, entailing an experience of their sister’s or brother’s condition dictates family life. Maya explains:

And, well, my brother is starting to get [better]. Now I can have more playdates at home, too. […] It is because he is starting to get a bit better now. […] That’s nice (Maya, aged 10, lines 869–880).

We observe how Maya enjoys the opportunity to invite playdates to her home when her brother’s condition allows her to, illustrating how her social life is contingent on her brother’s condition. Alba and Nora, aged 13 and 10, respectively, explain how living with an ill sister altered their holiday experiences.

A lot of things change for the family when you have an ill sister. […] We were able to do more. Yes, we were able to do more during holidays and things like that (Alba and Nora, lines 250–257).

Living with a life-threateningly ill sister or brother implies being confronted with death and, hereby, the fear of the impending loss of a sibling. This fear might be triggered by visualizing, for example, a sister suffering from epileptic seizures—a fear they do not always share with their parents. Maya reveals the following:

Sometimes, I am such a scam who keeps it to myself. […] And I pretend that I am okay, even though sometimes I am not quite okay. […] I think it is because sometimes I do not want to give my mom and dad more to worry about than my [brother] (Maya, aged 10, lines 477–484).

Maya’s quote indicates how she deliberately withholds her fear from her parents to avoid upsetting them. Furthermore, the quote suggests that Maya may understand that withholding her emotions might not be the most appropriate strategy for dealing with her fear. While some siblings seem to withhold their thoughts, fears, and needs for comfort, others have experienced unmet needs when seeking help from their surroundings. Isabella explains:

There were a lot of people I thought I could trust, until I lost my brother. Uh, then suddenly, there weren’t as many people I could rely on. […] The only ones who helped me were my school, which was actually a bit surprising. […] So, I was genuinely surprised that they recognized I needed something. Needed help (Isabella, aged 21, lines 804–806, 795–799).

In this quote from Isabella, we see that the help and attention she wished for came from an unexpected part, her school, while friends and family members, whom Isabella thought she could rely on, disappointed her. These statements from Maya and Isabella indicate that siblings are at risk of being left alone with their thoughts and fears and having to deal with these without adult support; a risk that may persist in the period of bereavement, as indicated by Isabella.

Difference and perceived normality

Living with a sister or brother in palliative care entails a different everyday life in various aspects. Some of the healthy siblings explicitly acknowledge this lived experience of difference. Their descriptions of living with costs, consequences, and the attitudes from their surrounding suggest an inherent understanding of difference, contrasting with their perception of normality among their friends and peers. Alba explains:

Our family is very different from theirs. I am the only one, so we are the only ones, um, in our classes who have a disabled little sister (Alba, aged 13, lines 526–527).

This comparison may lead to an internal experience of being or living differently, which furthermore entails having a different perspective on life. Isabella explains:

I think I perceive the world a bit differently than other people my age because I grew up with this brother. […] Well, you are not immortal. Um, I feel like many young people believe they are. […] And they also tend to panic more quickly when something happens in their life, whereas I think, ‘Is it just that?’ (Isabella, aged 21, lines 212–216, 224–225).

This quote from Isabella indicates that she perceives challenges and everyday problems differently than her peers, measuring the severity of life’s challenges on another scale. The altered perspective on life and its challenges may be reinforced by a different perspective on time. Arthur reflects:

Interviewer: If you had to mention three or four very important things in your life when you have an ill brother or sister, what would they be?

Arthur: To be with him. […] To have a nice time together (Arthur, aged 10, lines 101–105).

Arthur’s quote indicates that it is important to him to spend joyful times with his brother, as he is aware that their time together is limited. Several of the siblings describe experiences of feeling different since none of their friends or classmates are living with a sick brother or sister. Nora explains:

They are trying, but. […] They just have a totally normal family. […] But it would be quite nice if they could relate sometimes. […] Because then… [it would be] easier to talk to them about it (Nora, aged 10, lines 424–444).

In this quote, we see how Nora acknowledges her friends for trying to understand her life circumstances, though we glimpse a gap between Nora’s experience of her reality and her friends’ understanding of it, which may reinforce her sense of living differently and being different, which subsequently may lead to feelings of loneliness and sometimes being left to oneself.

While being among and conversing with friends may highlight experiences of difference, the healthy siblings seem to find a shared understanding when meeting and talking to other children in similar situations. Nanna explains:

It was that we could talk to each other about it. […] I think it was a little bit better with those in the group [supporting group for healthy siblings], because they have the same [experiences] as me, you know? Not like the others in my class (Nanna, aged 10, lines 1416, 752–753).

Free spaces

Several healthy siblings describe how they appreciate being in contexts or relationships where they can be themselves and have a moment free from being preoccupied with their sister’s or brother’s illness. Nanna articulates her concept of free spaces as follows:

Well, I dance, so I like dancing. […] Where you have a little something… a little something just for me, so you are not always at home and must. Yes. […] Sometimes I just like being in my room, playing with dolls, drawing, and [playing with] Barbie dolls and. […] I just think, there is such a lovely calmness (Nanna, aged 10, lines 226–228, 287–294).

For Nanna, dancing and playing represent an opportunity to let go of concerns, surrender to play, and provide her with a time slot where things are on her terms. Besides diverting from worries and concerns, free spaces may serve as an opportunity to be in focus and to be recognized. Nora said:

It is just great when you succeed at something in handball. When you do something right or you get acknowledged (Nora, aged 10, lines 492–494).

Finally, free spaces appear to be significant on a psychological and social level for Isabella.

Well, nobody at work actually knows about my situation. Um. So at work, I can be—well, I don’t have to pay attention to anything. Nobody can judge me. Um. Basically, it allows me to be… to be Isabella, and a totally normal young adult (Isabella, aged 21, 645–649).

By deliberately withholding her brother’s illness from her colleagues, Isabella provides herself with a free space and an opportunity to be perceived as exactly Isabella. This representation of free spaces is reciprocal, as the healthy sibling may experience a resemblance to their peers on the one hand and be perceived as such on the other. In this way, interacting with the surroundings may represent both a source of relief and an opportunity to feel and be perceived as their peers, and free spaces may reinforce the experience of difference, which appears to add further complexity to the siblings’ existence.

Care and communication

The theme of care and communication addresses the healthy siblings’ experiences concerning care and communication when interacting with their surroundings.

Being available and listening – a caring safety net

Living with a brother or sister in palliative care implies a certain amount of uncertainty and influences the siblings’ being in life in various ways. This is also the case when it comes to support and communication when facing their surroundings. Isabella explains.

Well, to be there for you. To listen to you, um, and when you are sad, um, just to talk about things and to understand the situation I have been in. Whereas others might have recognized that I am in a difficult situation, but they didn’t really know what to say or what to do about it. […] I also noticed that many adults, um, didn’t know what to do, and actually pulled away a lot (Isabella, aged 21, lines 701–708, 769–770).

This quote from Isabella reflects her desire for the adults in her immediate surroundings to step up by listening, thereby demonstrating their availability and support. Furthermore, Isabella’s quote implies an experience of being let down due to adults’ retreat. The experience of someone being available appears to be at least as important as more concrete caring efforts and may be interpreted as having a caring and emotional safety net. To be listened to in a present and authentic manner appears to be the most significant quality embedded in this caring safety net. Maya explains how she finds adults in her surroundings rewarding and less helpful to talk to about her life circumstances and her brother’s illness.

When they [the adults] listen to you. […] When you are talking, and then they just start talking and interrupt you, and things like that (Maya, aged 10, lines 154–161).

Maya seems capable of distinguishing genuine listening, where adults attentively listen and inquire about her experiences, from instances where adults are less present and interrupt, thereby ceasing to listen. Furthermore, our study emphasizes the significance of approaching the healthy siblings in a kind and gentle manner. Arthur explains:

Interviewer: What do we [as adults] do when we are not good at talking with you?

Arthur: Um, to be scrappy (Arthur, 10 years old, lines 236–237).

Arthur goes on to explain that his need for the adults in his environment to be attentive and non-dismissive was reinforced throughout his brother’s illness and passing. He emphasizes that dismissiveness, or the act of disregarding or minimizing his feelings and experiences, was particularly harmful during such a vulnerable time. Arthur felt that having supportive and attentive adults was crucial, as their acknowledgment and validation of his emotions helped him navigate the complex and painful experience of his brother’s illness and eventual passing. If the adults succeed in meeting the siblings in a kind and gentle manner, it influences the siblings’ experience of care and support. Nanna explains:

She is good at… sometimes, when I have a little too much on my mind, she is good at making it better. […] She says, ‘Well, we’ll work this out, and things like that’ (Nanna, aged 10, 418–423).

In this quote from Nanna, we see how a specific adult makes her feel better by letting Nanna know that she is not left alone with her thoughts and concerns, and thereby provides Nanna with a caring safety net.

Aligned care and communication

The task of providing aligned care and communication demands that adults in the healthy siblings’ surroundings are sensitive and attentive in their interpretation of the healthy siblings and their current situation. Maya explains:

They [adults] should be able to…to look closely at children, so they could see if they were okay and so on. […] Maybe, like, ask the parents about things at home. If something has happened at home (Maya, aged 10, lines 524–525).

Maya’s quote indicates that she would prefer, for example, teachers to ask her parents about her sister’s condition sometimes. This may indicate a need to avoid talking about or being reminded of having a sick sister or brother. Nanna says:

I think that it is also good sometimes. But then the emotions come when they ask so much about it and stuff like that (Nanna, ages 10, lines 1079–1080).

Nanna’s quote indicates that, as a healthy sibling, you might not always be aware of your state of mind or emotions before initiating a conversation. Coming in touch with one’s emotions may be nice and relieving one day, but it may reinforce worries and sadness on another day. In the following quote, Arthur is replying to a question about when adults in his surroundings are good at helping. Arthur says:

It varies. […] Sometimes more than others (Arthur, ages 10, lines 189–193).

Arthur’s response might hold two possible meanings: that some adults are better at helping him than others, and that adults succeed in helping to varying degrees. Adults’ ability to differentiate their attention and themselves appears to be decisive for the provision of aligned care and communication. In this way, we observe that healthy siblings are not only sensitive to how adults approach them, but the reciprocal nature of this sensitivity is also evident, as they desire adults to be attentive when interacting with them.

During an interview, Maya emphasized the importance of sincerely listening to her thoughts and feelings as a unique individual rather than solely as her brother’s sister. Maya says:

They ask how you are feeling, and not just like how your brother is. […] Sometimes I just think it is nice not to talk about it, but instead, they just talk to me. And it doesn’t have to be about my brother, or a sister, or sibling (Maya, ages 10, lines 176–177, 940–942).

Nanna and Maya’s quotes indicate that adults in their surroundings tend to approach them as siblings or relatives and, to a lesser degree, as unique individuals. In this way, caring for and communicating with healthy siblings might risk overlooking them as unique individuals and perceiving them only as siblings or relatives rather than as themselves.

Discussion

The purpose of this study was to qualitatively explore the existential agency and experience of being a young person living with a sister or brother receiving palliative care. A specific focus was on elucidating the voices of healthy siblings by exploring their expressed thoughts, feelings, and how they navigate their life circumstances. It was also considered how adults in their surroundings may support and care for these young people. We found that living with a sister or brother in palliative care entails living costs and consequences, as the healthy siblings and the entire family must adjust to the ill child’s condition. The siblings seem to be at risk of being left alone with their thoughts and feelings, either because they withhold their emotions or due to adults’ neglect and withdrawal. Consequently, the healthy siblings are forced to navigate significant existential tensions alone. We found that the siblings experience living a different life or having a different view on life compared to their friends and peers. They may feel different from their peers due to an experience of not being fully understood, emphasizing the significance of having free spaces—contexts or relationships in which they are given the opportunity to act and interact as themselves. Additionally, we found that the healthy siblings prefer to be met with care and communication in an aligned manner. By asking and listening in an authentic and present manner, adults close to the healthy siblings can demonstrate their availability and thereby provide a caring safety net.

These findings correspond with those of previous studies, stating that the whole family is affected when a child becomes seriously ill [1, 5, 6]. Healthy siblings often withhold their thoughts and fears to shield their parents, who are already overwhelmed by the need to balance domestic tasks and the responsibilities of worrying about and caring for the sick child [1, 7–9]. In a Danish survey, parents reported that the healthy child felt an unnatural sense of responsibility towards the family, hiding their emotions and often isolating socially [15]. This also seems to be the case in this study, where the healthy siblings explain how they withhold their feelings for the sake of their parents and family, and how they feel different from their surroundings and friends. Furthermore, the findings of this study support the notion that being confronted with the impending death and loss of a sister or brother, as well as the life-limiting conditions this entails, forces the healthy siblings to confront existential concerns and struggle with existential tensions [11, 12]. Additionally, the healthy siblings seemed to be forced to navigate significant existential tensions alone, without adult support.

This study adds to the existing body of knowledge by focusing on the voices of the healthy siblings and exploring their existential agency. It presents an in-depth understanding of how the healthy siblings interact meaningfully, relationally, and intentionally with their life circumstances. This includes managing their thoughts and feelings as well as navigating the needs and demands of their surroundings. To gain a deeper understanding of the siblings’ existential agency, the findings are discussed in relation to philosopher Axel Honneth’s theory of The Struggle for Recognition.

The struggle for recognition

In his work, The Struggle for Recognition, Axel Honneth [22] addresses how humans are constantly seeking recognition. According to Honneth, recognition requires interpersonal connections with other individuals, groups, or societies. He presents three spheres in which recognition is significant for the development of an individual’s identity and self-relation.

The first sphere, love or the private sphere, is crucial for the development of fundamental self-confidence and must be experienced in interpersonal relationships with mutual emotional support within a few close relationships with family and friends. Recognition in the second sphere, the legal sphere, addresses the recognition of the individual’s legal rights, thereby acknowledging them as an equal member of society. Being recognized as an individual entitled to universal goods fosters self-respect and the opportunity to realize one’s autonomy. In the third sphere, the sphere of solidarity, recognition occurs when an individual identifies as a member of a group, community, or society and is acknowledged for their unique abilities, qualities, actions, achievements, or way of life by the community or society. Recognition in the sphere of solidarity enhances an individual’s self-worth (self-esteem) as a member of a supportive society [35, 36].

Deprived recognition and self-confidence

According to Honneth, recognition in the sphere of love is fundamental for the ability to self-confidently step out and participate in the world [28, 35]. All participating siblings have loving and caring parents, but our findings indicate that the healthy siblings sometimes withhold and suppress their thoughts and fears to shield their parents. In this way, the healthy siblings might be at risk of depriving themselves of the significant emotional support that, according to Honneth, is essential for the development of their ability to maintain fundamental self-confidence and a positive relationship with themselves [35]. Furthermore, the healthy siblings might experience a lack of recognition in the private sphere as their sister’s or brother’s illness demands them to adapt and live with costs and consequences imposed by circumstances beyond their control. Lastly, the parents are, understandably, preoccupied with the sick child, which might result in less attention and recognition for the healthy sibling(s). In this way, the healthy siblings seem to be at risk of growing up with a less positive relationship with themselves, potentially affecting their participation in the world [35], which might reinforce their experience of living a different life. This difference seems to be further enhanced by their friends not fully understanding them and their life circumstances.

Securing a caring safety net

Children and young people have no statutory rights as relatives in the Danish One word: healthcare system, unlike young relatives in Norway and Sweden [16]. Neither do siblings have a formalized right to information about their sister’s or brother’s health conditions [37]. Danish politicians have formally agreed to strengthen the care and support for children and youth who are relatives by systematizing the identification of young relatives and upgrading the competencies of healthcare professionals [18, 38]. According to Honneth, an individual’s self-respect is at risk of being damaged or destroyed if either their legal or moral rights as right-holders are ignored [35]. By morally ignoring siblings as equally entitled to universal goods, such as awareness, care, and support, their opportunity to realize their autonomy is restricted, and likewise their self-respect. The participating families described how they had to reach out for help, support, and increased awareness around the siblings’ life circumstances, and they felt limited by bureaucracy when seeking help.

The participating siblings appear to value the experience of having a caring safety net, entailing someone being available, thus, it might be argued that securing this caring safety net in a formalized way may be beneficial in terms of recognizing their life circumstances. This study does not point to statutory rights in terms of care, information, or inclusion, but raises the question of whether formalized rights might serve as recognition of siblings’ existential struggle and thereby positively influence their self-respect.

Free spaces as supportive for self-confidence, self-respect, and self-worth

Our findings indicate that the healthy siblings become aware of their differences when engaging with their surroundings, society, and what they perceive as normality. This awareness of living a different life might be reinforced when adults and the surroundings, in general, fail to meet the healthy siblings in an aligned manner. This alignment might be interpreted as recognition of their unique life circumstances. If adults do not meet the siblings in an aligned manner, there seems to be a risk of the healthy siblings feeling neglected and let down by adults, which may result in a sense of distance and detachment from both adults and their surroundings in general. This lack of recognition in the sphere of solidarity may affect their self-worth, according to Honneth [35]. We found that the siblings are forced to adapt to several living costs and the consequences of having a sister or brother in palliative care. This may conflict with their experience of cohesion with others in mutually positive communities and confine the healthy siblings from fellowships and from gaining recognition for their unique contributions and qualities. In this way, the external perspective on themselves and their families as different may be reinforced when encountering society and amplify their inner experience of difference. This underscores the significance of healthy siblings meeting and communicating with other children and young people living with similar circumstances. Participating in, for example, support groups for healthy siblings may provide recognition for their personal and unique experiences, knowledge, and perspectives, and offer an opportunity to be part of a supportive community where they can mirror and recognize themselves in others. As described in the findings section, the healthy siblings’ free spaces seem to serve as a way of diverting from worries and difficulties. However, these free spaces might also be interpreted as spaces for achieving recognition. When Nanna is dancing, she receives her parents’ undivided attention and recognition. Similarly, Nora gains recognition for both her sporting abilities and as an equal member of the team when she plays handball. In this way, the free spaces might be interpreted as particularly important relationships, activities, or moments that support the healthy siblings’ self-confidence, self-respect, and self-worth, thereby enhancing their ability to navigate, act, and participate in life.

The struggle for recognition follows an idea about the good life. The three spheres must be lived through to achieve fundamental self-confidence, self-respect, and self-worth (self-esteem). If the individual does not achieve recognition, they are at risk of losing a positive relationship with themselves, which will affect personal development and identity. The three forms of recognition are, therefore, mutual prerequisites for an integrated society and the individual’s interaction within it [35, 36]. Our findings indicate that the healthy siblings are at risk of receiving insufficient recognition in all of Honneth’s three spheres. This is crucial, as their development and positive relationship with themselves, as well as their societal perspective, might be threatened.

Methodological considerations and limitations

To our best understanding, this study aligns with van Manen’s perception of phenomenology, as the findings are anchored in the voices of the healthy siblings themselves [27]. This approach elicits our abiding interest in and intention towards describing how healthy siblings express their existential thoughts, feelings, and agency. By applying Axel Honneth’s theory, The Struggle for Recognition [28], we have specified and concretized the spheres in which the healthy siblings are at risk and the potential consequences. The study combines retrospective and prospective data from the healthy siblings. Despite the focus of the study being on the time preceding death and living alongside life-threatening illness, it may be assumed that the healthy siblings’ responses are influenced by whether they have lost their ill sibling or not. It seems plausible to assume that the burdensome costs and consequences are more acutely felt by the healthy siblings still living with an ill sister or brother, whereas positive associations perhaps weigh more heavily in the bereaved siblings. This study only briefly touches upon the positive impact living with a life-threateningly ill sister or brother may have on their healthy sibling’s perception of their life circumstances. Additionally, this study does not specify the healthy siblings’ caring needs, nor does it provide recommendations for how healthcare professionals should communicate with healthy siblings. In this way, the study challenges a tendency in healthcare settings to focus on identifying needs and then fulfilling them. Furthermore, the study did not differentiate between the ages of the healthy siblings or whether they had siblings other than the ill sister or brother, which may have influenced the findings. Age and growing up with siblings tend to affect children’s ability to verbalize and reflect on various topics in life. Although the data indicated that the age of the child impacts cognitive and verbal abilities, the children were all articulate and reflective beyond their age. Finally, the inclusion process may have limited potential interviewee candidates from participating, for example, if the family or a healthy sibling did not consult the palliative care team’s chaplain during the illness trajectory. This implies that the healthy siblings, both currently and previously, have demonstrated openness to discuss existential and/or spiritual dimensions of life with the palliative care team’s chaplain. This may have influenced the findings of this study, potentially overestimating the significance and influence of these factors. Furthermore, it is plausible that the healthy siblings may have developed their cognitive and verbal abilities to articulate thoughts and emotions concerning existential and/or spiritual matters through conversations with the palliative care team chaplain or other members of the palliative care team. In this regard, it is important to note that the chaplain’s role is not solely confined to religious-oriented services and consultations but also encompasses supportive conversation. Nevertheless, this implies that there may be perspectives and ways of navigating living with a life-threateningly ill sibling that are not expressed nor revealed in this study. Perspectives addressing, for example, shame, anger, or resignation could have nuanced the theme concerning living costs and consequences, the conclusion of the study, and finally, the implications of the derived knowledge concerning care and communication.

By applying Honneth’s theory of recognition, this paper indicates and argues for the significance of receiving recognition through interpersonal connections in the development of an individual’s identity and self-relation. It might be argued that solely discussing the findings within the framework of Honneth’s theory lacks attention to intersectionality and other significant factors besides recognition, which are crucial for healthy siblings’ opportunities to navigate life, their personal development, and their self-relation. We hereby acknowledge the limitations of our findings when drawing from abstract and general assumptions about the significance of recognition, given that we solely refer to empirical data at the individual level.

There may be a risk that we have tended to approach the topic from a health scientific point of view, thereby emphasizing elements of significance that researchers from other scientific disciplines might have paid less attention to, and vice versa. Nevertheless, we have different backgrounds in health sciences, and we have strived to address the paper’s topic not merely from a health scientific perspective but from the perspective of existential agency, acknowledging the necessity and value of other scientific disciplines. Furthermore, all authors have read and re-read the manuscript and the selected quotations substantiating the analyses and findings, thereby triangulating the findings of the paper. We believe that we may have minimized the risk of bias by the close collaboration with the palliative care team for children and youths in terms of the selection of participants.

Suggestions for future research

Future research may explore how living with a sister or brother in palliative care might positively influence their healthy siblings’ perspectives on life, investigate how the emotional gap between healthy siblings and their friends can potentially be reduced, as well as how to support their friends’ best intentions to understand. Furthermore, we believe that future studies would benefit from distinguishing between the participants’ ages and the number of siblings, since these factors or an age-segregated analysis may have enriched the findings of the present study.

Conclusion

In both healthcare settings and on a societal level, our approach to encountering healthy siblings seems significant to their experience of care and for their existential wellbeing. This study indicates that omitting to recognize or even overlooking healthy siblings and their existential struggle to manage their life circumstances may impact their self-image and personal development. We have argued that caring for healthy siblings’ existential concerns is about acknowledging their life circumstances and their management of these. This highlights the importance of human skills in clinical practice and the need for knowledge and awareness about healthy siblings’ circumstances, widely in society. By emphasizing that knowledge and awareness about healthy siblings’ thoughts, feelings, and life circumstances are significant in terms of caring for them, we recognize that not every condition, pain, or worry can be fixed. Inspired by van Manen’s phenomenology [27], we argue that both healthcare professionals and society, in general, should focus on asking meaningful questions instead of solely intending to solve problems when it comes to caring for healthy siblings with a sister or brother in palliative care.

Authors’ contributions

SSV and DTV conceptualized and designed the study. SSV conducted the data collection, analyzed the data, and wrote the manuscript. DTV, DEJ, and JS revised the manuscript. All authors read and approved the final version of the manuscript and have agreed to be personally accountable for their respective contributions.

Funding

Open access funding provided by University of Southern Denmark. A warm gratitude to Ole Kirk’s Fund and Samfonden.

Data availability

The qualitative interview data generated and analyzed in the current study are not publicly available and cannot be shared due to the data protection regulations of the Danish Data Protection Agency. Access to data is strictly limited to the researchers who have obtained permission for data processing. This permission was given to The Research Unit of General Practice, Department of Public Health, University of Southern Denmark.

Declarations

Ethics approval and consent to participate

The study complies with the Declaration of Helsinki II’s ethical principles for research involving humans [39]. According to the Danish Act of Committees, health scientific interview studies do not require reporting to or approval by the Scientific Ethics Committee [40]. The study was registered retrospectively to SDU Research & Innovation Organisation (SDU RIO) and granted permission to commence the processing of the personal data with notification number 11,500, in accordance with the Data Protection Act §10 [41], on October 5. All written materials concerning information about the study, the legal status of the participants, and the processing and storage of data were reviewed and approved by the lawyers at SDU RIO before being distributed. The participants and their parents received both oral and written information about the purpose of the study, and they all gave their oral consent to participate and for the interviews to be audio recorded digitally. The participants were informed of the opportunity to withdraw their consent to participate, which entails that the researchers would not collect new data on the participant but were still allowed to use the data already possessed [41]. None of the participants withdrew their consent.

Consent for publication

Consent for participation and publication was obtained from all participants and, if necessary, their parents, in accordance with The Data Protection Act §10 [41] and The General Data Protection Regulation art. 6, stk. 1, litra e [42].

Competing interests

The authors declare no competing interests.