“What about me?”: lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition

ABSTRACT

Background

There is a lack of knowledge regarding siblings’ experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings’ perspectives are often expressed through their parents and not by siblings themselves.

Method

This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3–29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen’s lifeexistentials.

Results

One overall theme, “What about me?”, illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one’s own.

Conclusion

The study revealed that siblings’ own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings’ needs.

KEYWORDS:

• Attention
• child
• life-limiting condition
• life-threatening condition
• lived experience
• paediatric palliative care
• sibling

Introduction

Globally, siblings of approximately 21 million children (age 0–18 years) with life-threatening or life-limiting (LT/LL) conditions are living with their ill brother or sister (Connor et al., 2016). In Norway, siblings of an estimated 8,000 children (Fraser et al., 2021) live in such a situation. Approximately 20% of these young patients live with cancer, 40% with congenital genetic conditions, and 40% with neuromuscular diseases (Ministry of Health and Care Services, 2017). The World Health Organization (WHO) recommends that children with LT/LL conditions should be offered paediatric palliative care (PPC), a framework that includes active and total care for the child’s physical, emotional, social, and spiritual needs, which involves giving support to the whole family (World Health Organization, 2016). The UK charity Together for Short Lives (TfSL) has defined care pathways for children and adolescents (hereafter children) living with LT/LL conditions. These pathways provide frameworks for specific stages of illness, from perinatal care and time of diagnosis or recognition of a LL/LT condition, through the stage of ongoing care and transition to end-of-life care (Together for Short Lives, 2013). PPC includes providing support for siblings, and according to Norwegian law, siblings of severely ill children have their own legal rights to receive support (Norwegian Directorate of Health, 2017).

Previous studies have found that siblings are psychosocially at risk and should be provided with appropriate supportive services (Alderfer et al., 2010; Barlow & Ellard, 2006; Gerhardt et al., 2015; Long et al., 2018). Alderfer’s systematic review of siblings of children with cancer showed that while quantitative studies report no significant differences between siblings and comparison groups in terms of depression, anxiety, or problem behaviours, qualitative studies reveal negative emotional reactions, absence of positive emotions, impaired quality of life, and illness-related post-traumatic stress symptoms (Alderfer et al., 2010). Studies have found that siblings experience both positive and negative outcomes when living with an ill sibling (Dinkelbach et al., 2023). Positive effects include increased maturity (Alderfer et al., 2010), compassion, and autonomy (Long et al., 2018), increased empathy and resilience, improved family relationships (D’Urso et al., 2017), and the feeling of belonging to a special and happy family (Kreicbergs et al., 2022). Negative consequences include higher levels of emotional and behavioural difficulties (Fullerton et al., 2017); feelings of fear, worry, sadness, anger, guilt, and helplessness (Alderfer et al., 2010); uncertainty, family disruptions, limited parental support, school problems, altered friendships, and unmet needs (Long et al., 2018); and impairment of health-related quality of life (Dinkelbach et al., 2023). In addition, siblings may experience disrupted routines, increased responsibility (D’Urso et al., 2017), and concerns about their siblings’ impending death (Gaab et al., 2014), and they may position themselves as adults within the family, diminishing their own needs (Brennan et al., 2013).

There is an extensive body of research literature about siblings of children with cancer (Brennan et al., 2013; Gaab et al., 2014; Tay et al., 2022), but only a few studies have reported on siblings of children with other LT/LL conditions (Knecht et al., 2015; Kreicbergs et al., 2022; Tay et al., 2022; Wolfe et al., 2018). Further, many studies have investigated bereaved siblings’ experiences (Eaton Russell et al., 2018; Eilegård et al., 2013) rather than the experiences of siblings living with the ill child. Although there have been some studies on siblings’ experiences in recent years (Deavin et al., 2018; Eaton Russell et al., 2018; Knecht et al., 2015; Kreicbergs et al., 2022), little is known from the children’s own perspectives about being the sibling of a child with a LT/LL condition. Most studies in the PPC field are proxy reports in which siblings’ opinions are expressed through their parents and not by the siblings themselves (Houtzager et al., 2005; Wilkins & Woodgate, 2005; Winger et al., 2020). Further, the experiences of siblings below the age of seven or eight are rarely investigated (Alderfer et al., 2010). To address the knowledge gaps in previous research, this study aims to explore siblings’ own experiences of living with a sister or brother with an LT/LL condition, including non-cancer conditions. Moreover, as the study seeks to understand and delve deeper into the lived experiences of siblings, the study addresses the research question from a hermeneutic phenomenological approach which is suitable when exploring and understanding the lived experience of a phenomenon. The question asked is: What is it like to live with a sister or brother who has an LT/LL condition?

Methods

Design

The study has an inductive qualitative design, using a hermeneutic phenomenological approach from van Manen’s phenomenology of practice (van Manen, 1997, 2016). A phenomenological approach aims to understand a particular phenomenon by exploring lived experience (van Manen, 2016). Hermeneutic phenomenology is a descriptive (phenomenological) methodology as well as an interpretive (hermeneutic) methodology (van Manen, 1997). The approach is suitable for this study, as it may allow deeper insights into siblings’ own experiences of living with a brother or sister who is seriously ill. The four life existentials described by van Manen—lived body, lived time, lived space, and lived relations—have been used as guidelines in the research process (van Manen, 1997). Further, the philosophy of PPC serves as the frame of reference for the study (World Health Organization, 2016). In this article the consolidated criteria for reporting qualitative research (COREQ) was followed (Tong et al., 2007).

Recruitment and participants

The study is part of an overall study of the experiences of siblings, parents, and children of those with LT/LL conditions. This paper focuses solely on siblings’ experiences. Families with siblings were recruited from three hospitals in the southeastern health region of Norway and through three user organizations represented in the research network Children in Palliative Care (CHIP, 2023). Contact persons working at the hospitals recruited families by directly approaching parents and asking if they wished to participate. User organizations informed their member families about the study in meetings, in a closed Facebook group, and on a webpage. Interested families gave their consent to be contacted by the first author (TBK), who phoned the parents and provided information about the study. One family made contact directly, and one family declined participation after receiving more information.

All interviews were arranged to take place in each family’s home at a time that suited them. Siblings and their families were recruited regardless of the ill child’s LT/LL diagnosis, cognitive limitations, language, or ethnicity. Families with a child in the stage of ongoing care were included. Further, siblings over three years of age were invited to participate. The rationale for including children as young as three years old was that despite young children’s limited language skills, they are capable of expressing their views when they are supported by the context (Montreuil & Carnevale, 2018), and the child experiences a trustful relation in the research situation (Husby et al., 2018). Thirteen siblings from different parts of Norway were recruited from September 2021 to March 2022. Four other siblings in the families were not included because of their young age. Two of the participating siblings were in their twenties, and the remaining were under the age of 15, including two siblings under the age of 7. Four pairs of siblings participated in the study, and all but one of the participants were older than the ill child. Two siblings had divorced parents and lived part-time with the ill child, and two adult siblings lived independently. No siblings with minority backgrounds participated.

The conditions of the ill children were cancer and genetic disorders (Table I). The ill children’s conditions were grouped according to the four care pathways defined by TfSL (Together for Short Lives, 2013). Children in care pathway 1 were diagnosed at the ages of two and three, and two had suffered relapses. Of the children in care pathways 3 and 4, two were diagnosed at birth, two at the age of 2 as they developed normally until this age, and two children were diagnosed at 7 and 12 but had been ill since birth. The children in care pathways 3 and 4 also had complex needs related to reduced motor abilities, reduced oral speech, and reduced cognition, and most of them needed continuous auditing. None of the participants or their families were previously known to the researchers.

Table I. Demographic variables of siblings (N = 13).

Characteristics	n
Sibling gender  Female  Male Sibling age (years)	6 7 3.11–29 (median 10)
Ill child age (years) Ill child LL/LT category^a  Category 1  Category 2  Category 3  Category 4	3–17 (median 5) 3 0 5 1
Parents’ age  Mothers  Fathers Parents’ education level  Upper secondary school  Bachelor’s degree  Graduate studies	27–53 (median 38) 32–58 (median 40) 9 4 5

^aThe four care pathways of LL/LT conditions: 1. Life-threatening conditions for which curative treatment may be feasible but can fail, 2. Conditions for which premature death is inevitable, 3. Progressive conditions without curative treatment options, 4. Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death (Together for Short Lives, 2018).

Data collection

All interviews were conducted from October 2021 to April 2022 by the first author, who had extensive training in talking with children of different ages. A pilot interview with a family with three siblings (ages 5, 10, and 12) of a child with an LL condition (not included in the material) provided essential reflections on how to approach the phenomenon with siblings of different ages. The study interviews were conducted in the siblings’ homes and lasted an average of 40 minutes (range: 15 to 68 minutes). As the studies on parents’ and ill children’s experiences were conducted on the same day, the first author spent 4–7 hours in each family’s home. In cooperation with the parents, each child’s interview was planned based on their age and individual needs. According to the parents, children had various understandings of the ill child’s increased risk of death; therefore, the family’s words for the ill child’s condition, such as “angry cells in the blood” instead of “cancer,” were used. The researcher played or talked with the sibling ahead of the interview so that they would feel safe enough to speak freely (Kirk, 2007; Kortesluoma et al., 2003; Montreuil & Carnevale, 2018). Siblings were asked to bring a photo or object representing their experience of living with an ill child in a modified form of photo elicitation (Shaw, 2021). One sibling brought pictures, some spontaneously showed things in the house (e.g., the ill child’s medical closet and a drawing of the ill brother at the hospital), and others preferred only talking (Murray, 2005). All siblings chose to speak without their parents present, although in two cases, the parents sat in another part of the room. One sibling had the mother as an interpreter during some parts of the interview because of limited oral speech abilities. One sibling gave additional information in a four-minute recorded conversation with his mother that was included in the material. All findings are uniquely siblings’ perspectives, as this was the study’s primary goal.

Siblings were told that the topic of the conversation was, “What is it like to be the sibling of an ill child?” After that, they were asked to talk about their siblings. They were asked whether there was anything nice about being the brother or sister of an ill child and whether there were any difficulties related to it. The interviewer asked follow-up questions, prompting the siblings to narrate specific situations or events, and sought to uphold an open attitude towards what was being communicated during the interview. Interviews were digitally recorded, transcribed, and de-identified, and all siblings were given fictitious names. Only the main author knew the participants’ identities. Field notes from environmental observations were not included in the analysis but supported understanding of the meaning in the siblings’ lived experiences.

Analysis

A thematic analysis using van Manen’s approach was conducted by the first author in collaboration with the co-authors. The analysis followed a process in which the relationship between “parts and the whole” was discussed continuously. The first part of the analysis involved a naïve reading of the transcribed interviews. Reflections about the material were written down before beginning the next step. In all interviews, each of van Manen’s life existentials—lived body, lived time, lived space, and lived relation (van Manen, 1997)—were marked in separate colours to support reflection on the material. Two authors, AW and CC, colour-marked two interviews for calibration with the first author. Further, material marked as lived experience was read with van Manen’s detailed line-by-line approach, focusing on the research question, “What is it like to live with a sister or brother with an LT/LL condition?”.

Each line was rewritten into second-person language and then into meaning phrases expressed in a language close to the siblings’ language (Table II). Meaning phrases with similar meanings were grouped into subthemes. The subthemes were revised and refined several times during discussions of their inherent meaning. We sought to find the essential structure of the findings as well as the nuanced aspects. Subthemes with similar meanings were grouped into themes, and agreement upon the themes among the researchers was obtained after thorough discussions and reflections until no new themes added substantial meaning to the material. Further, reflections and revisions continued during discussions of headlines and the written content in the themes and subthemes. Descriptions of the pictures and objects the siblings showed in the interview were not analysed specifically but were included as a part of the interview text. Finally, an overall understanding resulted in one overall theme. A vital part of the analysis process was undertaken by writing and rewriting. Preliminary findings were discussed with experienced researchers and practitioners within the field of PPC as a way of “testing” the authors’ preunderstanding and gaining a deeper understanding of the meaning of the material. Finally, the interviews were reread to ensure that the findings represented the siblings’ voices. Some words were replaced with words closer to the siblings’ words, and quotes were chosen to illustrate the findings.

Table II. Examples of the Analysis process.

Life Existential	Quote	Second Person	Meaning Phrase	Subtheme	Theme
LIVED TIME	“It was so uncertain how Stian was doing. You never knew when you got the call if he had died.” (age 29)	Stian’s brother experienced the situation as uncertain, and he never knew when he would get the message that Stian had died.	Living with an ill sibling is having a constant fear of being told your sibling has died.	Living in an unpredictable situation	Living with heavy strains
LIVED RELATION	“Liam gets more attention than me. He can lie in Mummy’s bed when he wants to. That is the dumb part.” (age 8)	Liam’s sister felt that it was dumb that her ill brother got more attention than her.	Living with an ill sibling is experienced as getting less attention than your ill sibling.	Lack of attention	Feeling disregarded
LIVED BODY LIVED SPACE	“I get tired of my sister being ill. Then I like to relax here in my room.” (age 12)	The brother experienced that he got tired of his sister being ill, and then he liked to relax in his own room.	Living with an ill sibling is needing respite in a place of one’s own.	Needing time and place for respite	Having needs of one’s own

Ethics

This study rests on a fundamental belief in children’s agency and competence (Montreuil & Carnevale, 2018) and children’s rights to express their opinions and be listened to, as stated in the United Nations Declaration of the Rights of the Child, Article 12 (UNICEF, 2022). The study complies with the Declaration of Helsinki (World Medical Association, 2013), the European Code of Conduct for Research Integrity (ALLEA, 2023), and the Ethical Research Involving Children (ERIC guidelines (Graham et al., 2013). Approval was obtained from the Regional Ethics Board (ref number 251284), the Norwegian Center for Research Data (ref number 289,184), and the research ethics boards at each hospital. Written informed consent was obtained electronically or by paper from the parents of siblings younger than 16 and from the siblings themselves when they were older than 16. Consent could be recalled electronically until the analysis began. The Service for Sensitive Data (TSD) was used to collect and store sensitive data. The interviews were recorded directly to the TSD server via the “Diktafon app”.

Siblings received age-adapted information (written and oral) before the interviews, and for the youngest children, a symbol board made on an iPad with the Twinkl app (Twinkl, 2023) was used to support information before and during the interview in a concrete and understandable way (Figure 1). Siblings were encouraged to say “stop” or to use a stop sign whenever they wanted, and two siblings ended the interview themselves when they felt done (Oulton et al., 2016). All the siblings received a small surprise gift for participating, given after the interview according to the ERIC guidelines (Graham et al., 2013). After the interviews, the siblings were encouraged to talk with their parents about any emotional issues. The researcher contacted the parents 1–2 weeks after the interviews, and the parents reported that none of the siblings had described negative reactions related to the interview.

Figure 1. Symbol board with information for the sibling. 1. ”Would you like to talk with me?”, 2. ”We will talk as long as you want to”, 3. ”Feel free to say ”stop” at any time”, 4. ”If you like, you can do an activity while we talk”, 5. ”What you say will be kept private”, 6. ”You can show a thing/picture to make me understand”, 7. ”I must use a tape recorder to remember what you tell me”, 8. You are the expert. There are no wrong answers.”

Preunderstanding

The authors’ preunderstanding included experiences from various professions, such as nursing, occupational therapy, and clinical medicine, as well as research-related experiences of PPC in different healthcare service organizations, multiple diagnoses, and varying phases of illness. The PPC framework served as a shared framework for the researchers. All members of the group were women and mothers.

Results

What about me?

One overall theme, “What about me?”, illustrates that the siblings of children with LT/LL conditions were dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. Three themes contributed to the overall theme: (1) Living with heavy strains, (2) Feeling disregarded, and (3) Having needs of one’s own (Figure 2).

Figure 2. Results.

Living with heavy strains

Siblings faced significant challenges and stress when their brother or sister was seriously ill due to practical matters as well as unpredictable and sometimes traumatic events.

Living an unpredictable life

Life with an ill child was unpredictable in the sense that the siblings never knew when the ill child’s condition deteriorated. The ill child’s condition could change quickly from stable to critical, and some siblings lived in constant fear and worry that something terrible would happen to their ill sibling or that their parents would have to rush them to the hospital on short notice. “It is like walking on glass, in a way. […] I am constantly waiting for that phone call. When the phone rings, I feel anxious” (sibling 2, age 29). Another part of the unpredictable life, described several times by some siblings as leading to emotional chaos, was when siblings were told that the ill child was going to pass away, and then they unexpectedly recovered and survived.

Experiencing traumatic incidents

Traumatic and frightening incidents were described as a part of life when living with a seriously ill child, such as when acute situations happened at home, if the ill child had an epileptic seizure, or when the ill child lost developmental skills that changed them. “Sometimes, when he has seizures, I get scared. It is like he gets lightning and thunder in his head. And then he lies completely still without blinking. Then I feel sad. I do not like when he has seizures” (sibling 3, age 8). Hardly ever did the younger siblings describe traumatic situations as extraordinary; they were more often described as a part of their normal life. However, traumatic incidents made siblings feel afraid, and such feelings were often related to thoughts about the ill child dying or experiencing pain during medical procedures. In acute situations, some siblings had experienced being left alone or not being cared for, as the focus was on saving the ill child.

Practical matters causing stress

Practical matters were described as increasing strain on the siblings’ everyday life. When both parents were at the hospital with the ill child, siblings might have to be alone, sometimes over long time spans, and often with extra responsibilities for housework and younger siblings. “One year, my parents were at the hospital with my brother for 260 days” (sibling 2, age 29). “When my sister got ill, we had to be a lot at the hospital and a lot at home alone” (sibling 12, age 13). When the ill child was at the hospital, siblings missed their ill brother or sister intensely, and feelings of sadness and fright often resulted. Younger siblings sometimes accompanied the family to the hospital or stayed overnight with friends or relatives. Even if some siblings found this nice, it took energy and added stress, as routines were changed and “it was not home.”

Another practical strain was that even though most siblings liked spending time with their sister or brother, the relationship demanded that they adapt and take great responsibility, because the ill child needed help, was in a bad mood due to medical treatment, or had severely reduced motor, cognitive, or language skills. During periods that were extra hard for the family, several siblings reported that their parents scolded them more than the ill child, which was experienced as highly unfair. Siblings further described that other siblings in the family could be a source of support, although also a source of additional strain as they struggled with their own lives.

Feeling disregarded

Siblings often felt set aside in everyday life, as parents and others tended to focus their attention on the ill child. Out of respect for the ill child and their parents, siblings were constantly considerate. However, when siblings were given time, gifts, or attention by parents or other significant persons in the sibling’s life, this had a positive impact on their well-being.

Lack of attention

Independent of age, the siblings described feeling that they repeatedly received less attention from adults than the other children did. Their parents often focused on the care of the ill child and spent much time and energy on hospital visits or other responsibilities related to the ill child’s daily needs, leading to siblings feeling neglected and overlooked. “Sometimes I want to play with my mum and dad. To build houses. But when I have built a house and I want to show them, they are busy with my brother. It is odd that they both need to be with him and don’t want to see what I have built” (sibling 8, age 5). Younger siblings often felt it was unfair when their ill sibling received special treatment, such as new clothes, sweets, or extra iPad time. These benefits significantly impacted siblings, as this kind of attention were concrete and visible evidence of unequal attention from their parents. The demanding nature of their situation also hindered families from making plans for leisure activities or vacations, which further made siblings feel like they lost attention and time with their parents.

The lack of attention did not diminish over the years, and even after moving out of the family house, older siblings described parents being unable to attend family events or look after grandchildren, as they still had to care for the ill child. Even though siblings acknowledged that their ill sibling needed additional care, they perceived the unequal attention as unjust and painful. Some siblings described feeling anger and jealousy towards the ill child or other children who had their parents’ attention, and such feelings were described as complicated, as they were intertwined with feelings of shame and bad conscience.

Taking constant considerations

Siblings took constant consideration of the ill child and the family by setting their own needs aside and trying not to be an additional burden or problem. The considerations could entail limitations in the siblings’ own lives, such as not telling their parents about their problems, refraining from travelling out of fear that the ill child would die while they were gone, or not inviting friends home. “You do not want to make noise. You do not want to be a burden or a problem. You hardly want to ask for help with homework, because you know your family has more than enough. It is what you do the most—take considerations” (sibling 1, age 27). Further, instead of emphasizing how hard the situation was for them, the siblings acknowledged their parent’s complicated situation and that they were doing their best for the family.

Longing to be seen

Siblings described longing to be acknowledged by their parents, friends of the family, family members, other children, neighbours, acquaintances, or healthcare professionals. Often, it was just a matter of people remembering to ask how they were doing. Discrete efforts from others could significantly impact siblings feeling “seen,” rather than overlooked, such as when nurses gave sticker rewards to all the children in the family, or the teacher took minor considerations at school. “It would have made a big difference if someone just asked how you were doing. Someone who saw us. No matter who. A teacher. A friend. The parents of a friend. It would not have mattered who, I think” (sibling 2, age 29). Some practical solutions, such as an employed assistant or au pair, made a big difference for siblings, as it allowed them to be seen and receive attention from parents or other adults.

Having needs of one’s own

Siblings expressed that it helped to have someone to talk to as well as be included in updates about the ill child’s status, while they also, from time to time, wanted a time-out and a place of their own for respite.

Knowing there is someone to talk with

The importance of knowing that there was someone to turn to about everyday struggles and worries, or simply to be comforted, was expressed repeatedly by siblings. Older siblings emphasized that having someone to talk with from early on was essential to make it feel natural. Siblings often found it sufficient to talk to their parents, but it could be challenging to find time to talk when parents spent long periods of time at the hospital or were occupied with the ill child. Further, siblings felt that it was helpful to talk with a psychologist, a public health nurse, a teacher, a person from a charity organization, or a person from the municipal youth assistance service. “Sometimes, at the beginning, I used to go to the public health nurse at my school. There, I talked about it, and it helped a lot. I could draw how I felt. And then she realized what I meant. Sometimes, I wrote it on paper so she would understand how I felt. And it helped” (sibling 6, age 8). Additionally, knowing that the teacher at school knew about the situation created a sense of security, even if the teacher did not do much.

Wanting to know what is going on

Updates on the status of the ill child, including day-to-day information about their condition and treatment, were experienced as comforting. “I really like knowing what is going on. I want them to tell me if something happens to Vera when she is going for an MRI or something like that. Sometimes they tell me, sometimes they do not. Because they forget it” (sibling 13, age 10). Siblings described being more afraid, uncertain, and occupied with thoughts of the ill child if they did not know what was going on. When other people knew more than the sibling about how the ill child was doing, or when people other than the parents were the first to tell them that the ill child could die, siblings felt hurt and left out.

Needing time and place for respite

Siblings appreciated moments and activities that offered a break from illness and healthcare. Moments of break could be small and ordinary things, such as filling their minds with something else, doing something outside the family, or simply retiring to a private space. “I get tired of my sister being ill. Then I like to relax here in my room” (sibling 9, age 12). Even though the siblings preferred the ill child to stay at home, it was sometimes described as a relieving break when the ill sibling went to the hospital, offering siblings time on their own or with one parent. When parents were divorced and lived in separate locations, this could constitute one way for siblings to find a break with room for their own needs and less focus on illness.

Discussion

This study explored siblings’ experiences of living with a sister or brother with an LT/LL condition. As the study included siblings aged 3 to 29, the findings showed that siblings may share many of the same experiences, regardless of age. Siblings experienced living in demanding situations that resulted in practical and emotional strain in daily life. These findings are consistent with previous studies that have shown the extra responsibilities and burdens that siblings bear when living with a seriously ill brother or sister (Boyden et al., 2021; Chin et al., 2018; Coombes et al., 2022; Eaton Russell et al., 2018; Løkkeberg et al., 2020; Tay et al., 2022; Wawrzynski et al., 2022; White et al., 2017).

One prominent and urgent experience reported by the siblings was feeling disregarded and deprived of attention from parents and significant others. Lack of attention was expressed repeatedly by siblings of all ages and highlights that this issue must be addressed when supporting siblings in PPC. Loss of attention has been reported in other studies (Haukeland et al., 2015; Hovén et al., 2023) and can be caused by physical separation and emotional unavailability from parents (Björk et al., 2011), making siblings feel set aside, lonely, and overlooked by their families (Erker et al., 2018; Kobayashi et al., 2015; Mooney-Doyle et al., 2018; Tay et al., 2022; Verberne et al., 2017). Additionally, siblings may feel neglected by peers, teachers, extended family, and friends, as all attention is on the ill child (Long et al., 2018; Winger et al., 2020). Although some studies report improved relations with their parents and others outside the family (D’Urso et al., 2017; Eilertsen et al., 2018), “family time” is often overshadowed by worry, stress, or a focus on the ill child’s care (Eaton Russell et al., 2018).

Van Manen described the parent—child relationship as a special lived relationship that provides a fundamental sense of support and security for the child, which ultimately helps the child develop into a mature and independent person (van Manen, 1997). From this perspective, a lack of parental attention may have serious consequences for siblings living with a severely ill sister or brother. Studies have found that the parent—sibling relationship is a significant factor in identifying children at risk of mental health issues (Fredriksen et al., 2023) and that there is a strong correlation between the parent—sibling relationship and the sibling’s health-related quality of life (Kobayashi et al., 2015). Parental attention deprivation is not due to unwillingness from parents to care for their other children but a lack of capacity due to the demanding care responsibilities of their ill child (Bronsema et al., 2022; Gill et al., 2021; Lazzarin et al., 2018). Parents struggle to balance the care of the ill child with the other children’s needs and may have to prioritize the ill child’s physical and emotional needs, as they are often seen as more important and urgent than the needs of the siblings (Verberne et al., 2017). Concerning the relationship between siblings and the ill child, our study revealed that though siblings appreciated spending time with the ill child they also described the strain in the relationship due to challenging emotions and additional responsibilities. This aligns with findings in Tays review (Tay et al., 2022). However, the overall finding related to family relations in this study was the overshadowing feeling of lack of attention from their parents as a result of the ill child’s illness.

Our study further found that siblings took great consideration of their parents and the ill child in their daily lives, prioritizing their needs before their own. Instead of describing what they experienced as difficult themselves, siblings often referred to their parents’ demanding and challenging situations. Other studies have also reported that siblings tend to prioritize others’ needs over their own in daily life (Haukeland et al., 2015; Hovén et al., 2023; Wawrzynski et al., 2022) and that when they are asked about their experiences, they often refer to their ill siblings or parents instead of describing their own experiences (Brennan et al., 2013; Eilegård et al., 2013; Fredriksen et al., 2023; Kobayashi et al., 2015). Some siblings may silence themselves and appear to be coping well when they are not (Brennan et al., 2013), which is a worrisome finding, as siblings who are struggling may not get the help they need from parents, healthcare professionals, or other significant adults.

Our study contributes deeper insight into how siblings can be supported with attention. Even small amounts of attention from parents and other significant people may allow siblings to feel acknowledged and supported. Professionals from different parts of the health and social care system are uniquely positioned to support siblings in daily life. Healthcare providers, such as nurses, physiotherapists, physicians, occupational therapists, or public health nurses doing home visits or providing care at the hospital, can give siblings attention simply by asking how they are doing, remembering their names, asking if they want to show their room, or including them in caring for the ill child. Acknowledging that being a sibling is challenging by merely saying so can be helpful in itself, as it acknowledges that the whole family, including siblings, are in a tough situation. Parents can also balance the bias of attention in minor efforts in everyday life, by including siblings in the “extra” attention the ill child might get in the form of gifts, sweets, or rewards.

It is important to note that people other than healthcare providers can play an important role in supporting siblings. Our study demonstrates that having a teacher who is aware of the situation benefits siblings just through their presence. This finding is supported by Kobayashi’s study, which showed a strong correlation between siblings’ emotional functioning and teachers’ support (Kobayashi et al., 2015). Another finding of our study indicate that practical arrangements in the home, such as an assistant or an au pair, can help siblings receive more attention from their parents. Such services are often provided with parents and the ill child in mind, but siblings may also benefit from this kind of help (L. M. Jenhaug, 2014; L. Jenhaug & Askheim, 2018). Previous studies have shown that it can be difficult to have this kind of help granted (L. M. Jenhaug, 2014; L. Jenhaug & Askheim, 2018; Rallison & Raffin-Bouchal, 2013), and therefore, this understanding holds importance for social systems that grant such services.

Our results further showed that siblings wanted to know that they had someone to talk with, be informed about the ill child’s illness status, and have moments of rest. The importance of talking with someone is consistent with other studies reporting that communication between parents and siblings is one of the most critical factors in siblings adapting to life with an ill child (Jaaniste et al., 2020; Marklund et al., 2018), and leading to siblings feeling less alone (Eaton Russell et al., 2018; Lövgren et al., 2020). Siblings may struggle to speak about their feelings (Jaaniste et al., 2022) or avoiding initiating conversations to protect their parents from feeling sad or uncomfortable (Eaton Russell et al., 2018). In D’Urso et al. (2017) study, all siblings reported that it was helpful once they had been able to talk and recommended it to other siblings (D’Urso et al., 2017). The siblings in our study expressed the need for someone to talk with from an early stage of their sister’s or brother’s illness trajectory.

Although most siblings in the study found it sufficient to talk with their parents, parents may need help understanding that siblings need to talk and could benefit from improved knowledge of how to do this. Some interventions may be helpful to improve parent—sibling communication, such as the family talk intervention (Ivéus et al., 2022; Lövgren et al., 2022) or SIBS (Haukeland et al., 2020). Our study shows that it may be difficult for siblings to talk with their parents when they are at the hospital. This aligns with the findings of Shudy’s et al. (2006) study, which showed that the availability of parent—sibling communication may be problematic due to parents being busy and distracted. The family may need to find alternative ways of communicating, such as phone or video solutions. Further, parents may need assistance in finding a person outside the family who can be available to talk with the sibling early in the process and over time. This person could be a grandparent or a close family friend. Such a person can be identified by mapping the social network of the family. Siblings in our study pointed out that it was helpful to talk to a public health nurse at school, a finding also highlighted in Vatnes study (Vatne et al., 2021). Public health nurses can be stable and reliable adults who are available at school, where siblings spend a lot of their time. However, a Norwegian study shows that 67% of public health nursing leaders report that the services in their municipality had no system to identify siblings or to provide them with routine care (Bergvoll et al., 2023). In the future, it is important to raise awareness about the importance of identifying and giving routine care for siblings, by fostering a coordinated effort among hospitals, health services in the municipality and public health nurses at schools.

Finally, the illness trajectory of children with LT/LL may be long lasting, and siblings need support not only during the initial phase but also throughout the entire course of illness, which could last for many years. Despite a recent study indicating that adult siblings of long‐term survivors of childhood cancer have no impairment in psychosocial functioning compared to references (Joosten et al., 2023), adult siblings of children with other LT/LL conditions, such as genetic and neurological with no curative treatment options may perceive lasting impacts on the family due to the ill child’s condition. As shown in our study, the impact of living with a child with a LT/LL condition may last over generations when parents are unavailable not only for the sibling but also grandchildren. Therefore, it is vital to acknowledge, inform and empower adult siblings to comprehend and cope with the situation effectively over time.

Strengths and limitations

Different steps were taken to enhance the trustworthiness throughout the study (Connelly, 2016; Lincoln, 1985). As the study aimed to elicit siblings’ own experiences of living with an ill sibling, it strengthened the credibility that the siblings’ descriptions were supported by pictures and objects they were encouraged to bring or spontaneously show in their house, as it facilitated the memory and advanced the researcher’s understanding of matters affecting them. Further, the context of being in the siblings’ homes offered a safe space for talking, which was especially important for the younger siblings. The researcher was well experienced in talking with children of different ages and facilitated the situation so that each child could express themselves in the best way. One limitation of credibility may be that siblings were only invited for one interview. Possibly, they could have shared more experiences if given the opportunity for a second interview. Although the age range of the siblings varied greatly, spanning a large developmental scale, this was more likely a strength than a limitation for the credibility, as descriptions from the older and younger siblings supported each other and gave a richer yet coherent picture of the siblings’ experiences. The hermeneutic phenomenological method proved well suited for eliciting also the younger siblings’ lived experiences, as lived experiences are concrete and pre reflected everyday experiences. However, to enhance the credibility, the analyses required special attention to avoid overweighing data from the oldest siblings due to their longer and richer descriptions. Data was collected as part of a larger study and thus data collection was ended after a pre-decided number of participating families rather than as a result of data saturation. To reach full saturation of a phenomenon can be considered impossible (van Manen, 1997). At the same time the first reading of data demonstrated both richness and common experiences with clear consistency.

To enhance the dependability and confirmability, the authors elaborated on their preunderstanding in repeated meetings throughout the research process. The first and last authors also had a meeting to discuss their preunderstanding ahead of the data collection. Three of the authors read all interviews, and two of the authors read half of the interviews, which permitted all authors to constantly ask critical questions about the analysis and the written material. To further heighten dependability and confirmability, preliminary findings were discussed with experienced researchers and practitioners within the field of PPC. Quotations from siblings were written in the text to show further that the findings are grounded in the data. Regarding transferability, the extent to which findings are useful to persons in other settings (Connelly, 2016), we gave descriptions of the context, participants, and analysis so that readers can decide whether the findings are applicable to their setting. The findings were limited to the experiences of siblings of children with cancer and genetic conditions, and there may also be differences between these two conditions that did not emerge in this study. Additionally, no siblings with a minority background participated. Further research into these limitations may be valuable for understanding more of siblings’ situations.

Conclusion

The study contributes insights into siblings’ first-hand experiences of living with a brother or sister with a life-threatening or life-limiting condition as a life filled with heavy strains and lack of attention. Siblings’ own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, such as school teachers, on how to meet siblings’ needs. Further, it highlights the need for social support systems to consider the needs of the whole family when a child suffers from an LT/LL condition.

Acknowledgments

We are very grateful to the siblings who generously shared their experiences in this study. We thank the user organizations and hospitals for their efforts in recruiting participants.

Disclosure statement

No potential conflict of interest was reported by the authors.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

OsloMet funded the study.

Notes on contributors

Trine Brun Kittelsen

Trine Brun Kittelsen, OTR, MSc is a PhD candidate at OsloMet. She has 20 years of experience as a paediatric occupational therapist in habilitation and municipal health services.

Charlotte Castor

Charlotte Castor, PhD, is an associate senior lecturer at Lunds University. She has 25 years of clinical nursing experience and is a researcher within home care service for ill children and PPC.

Anja Lee

Anja Lee, PhD, MD, has been a paediatrician for many years and is currently leading the first Norwegian PPC team, which was established in 2019.

Lisbeth Gravdal Kvarme

Lisbeth Gravdal Kvarme, PhD, is a professor of public health nursing at OsloMet. She has clinical experience in a hospital for severely ill children.

Anette Winger

Anette Winger, PhD, is a professor in palliative care for children and adolescents at OsloMet. She is an experienced paediatric nurse, educator, and researcher in paediatric palliative care. AW is the leader of the CHIP research network.