Introduction
Every year thousands of children experience bereavement. When a sibling dies, adults are understandably so engrossed in their own grief that children’s grief may be unnoticed. However, the way in which children are supported when sad things happen, may have a profound effect on how they are able to adapt to the death and is also likely to impact on the strategies they develop for coping with subsequent loss (Brown, 2013, Slaughter and Griffiths, 2007). Sibling grief is an individual journey. Each child is unique, and they will respond in the way that is right for them.
Children’s Understanding of Death
Early Years
From as early as six months old, a baby may respond to the absence of a primary carer by showing irritability and changes in their feeding, sleeping or crying patterns. This is sometimes called separation anxiety (Muriel et al, 2012). In the early years, children begin to develop strategies to help them deal with the world around them (Kenyon, 2001).
They may attempt to make dangerous or threatening situations seem safer, so, in games about monsters or ‘scary’ people, the ‘bad’ character is dealt with by removing them e.g., shouting ‘Bang! Bang! You are dead’ (Brown, 2013). Few children will understand the permanence of death and they may believe that dead means being asleep. They think in literal terms, so euphemisms and metaphors such as ‘lost’ or ‘gone away’ may be confusing (Andirkopoulou, 2004).
If children ask questions, these are usually to gain more facts. It is unusual for children to ask more than one question at a time. However, children may need to ask the same questions over and over again in order to make sense of situations (Slaughter and Griffiths, 2007).
By the time most children are seven years old they begin to understand death as having a cause, as being permanent and as being something that can happen to anyone, including themselves. Therefore, they may show signs of fear, although some children as young as seven may demonstrate a denial of their feelings and appear to be unaffected by a sad event.
“Hannah, who was a bit more cautious, gave him a little kiss. It was a heartbreaking time.”
(SOFT UK parent)
Generally, children will expect adults to be sad when a sibling dies. Where families are members of faith communities, children’s understanding of what happens after death will reflect the teachings and beliefs of the community (Brown et al, 2008; Kubler-Ross, 1969). As a result of her concern about how to explain death to children, Kubler-Ross (1969) developed a model for explaining the physical and spiritual process of death. The model describes the physical body as a cocoon that envelopes a butterfly waiting to emerge, which is the child’s spirit. At the moment of death, the cocoon opens and releases the butterfly, which represents the sibling. The cocoon is buried or cremated, and the butterfly continues its existence elsewhere.
Middle Years
Gradually, a young person’s understanding of the finality of death becomes more mature, although in the early stages, abstract concepts may still not be fully grasped. Young adolescents are likely to ask questions about funeral arrangements or cremation or burial practices, and they have often formed their own opinions about what happens at death and beyond. It is not unusual for children to ‘idealize’ a person who has died (Brown, 2018).
Nicola, aged nine, belonged to a Christian family. When her brother died, she told her grandma, ‘Don’t be sad granny, Sam has gone to heaven. It’s a lovely place’.
Adolescence
Young adulthood involves independence and psychological, physical and social changes. The death of a family member may result in guilt-feelings or self-reproach, or it may be perceived as a stigma or something to be ashamed of. Many young men suppress their emotions and denial of death is common. Some youngsters will seek out dangerous experiences in an attempt to gain control over death (Brown and White, 2008).
Children’s Awareness of the Process of Dying
Children are very perceptive to the emotional responses of adults. No amount of silence or secrecy can hide the fact that something is wrong. Overheard conversations, glimpses of adults in tears and changed routines can make children fearful. By giving your child(ren) concrete information, fantasies and confusion can be avoided. Often adults hold back from telling children the truth because the task is such a difficult one. Whether a child should be told of the seriousness of their sibling’s illness is open to debate (Kubler-Ross, 1969). Generally, it is believed parents’ wishes should be respected regarding how much information should be given to siblings. Brown (2018) believes:
Parents are important as role models in determining a child’s response to the sibling’s illness and inevitable death;
Where parents are able to break the news calmly, the child will cope better;
Many children are resilient to stress and they may cope better than their parents;
Children need to know the truth.
Support should include:
Helping your child(ren) to express their fears and concerns;
Helping your child(ren) to communicate what they already know about their sibling’s illness;
Helping your child(ren) to express their own preferences and needs.
Children’s Questions about Death
Questions children ask about death generally fall into four main categories (Brown, 2018):
A need for factual information;
Children are likely to be curious about their sibling’s illness. Questions such as, ‘Why did… get ill with trisomy?’ or ‘What happens next?’ may be asked.
A need to check out emotional responses;
Often young people are very confused by the range of emotions they experience and the way the family is coping. Their questions may reflect this confusion as they ask, ‘Why is mum/ dad upset?’ or ‘Why is my head in a muddle?’
Searching for a reason for what is happening;
It is a human response to search for a reason for trisomy, and children may feel that they are in some way to blame for what is happening to their sibling. Their questions may include, ‘What did I do wrong?’ or ‘Why couldn’t the hospital make … better?’
Spiritual and religious concerns.
Lastly, children may live in families and in communities that reflect religious and cultural beliefs and practices. Some of the questions they ask are very difficult to answer such as ‘Why does God take the young ones first?’ or ‘How do we know there is enough room for…in heaven?’ (Brown, 2007)
“Scott asked Robert our vicar, ‘Would Dylan have a special job in heaven?’ He said yes which gave Scott some comfort.” (SOFT UK parent)
Questions like these may catch adults off-guard. However, children usually phrase questions in a way that lets adults know how much information they require. Therefore, it is very important to listen carefully to what your child asks and to observe their responses. Reflecting a question back, or re-phrasing it in a way which encourages the child to give more information about their underlying concerns, can be very helpful. You should:
Consider the age and developmental level of your child;
Listen carefully to what your child is asking;
Clarify any unspoken contexts in a question;
Clarify any ideas of confusion or misunderstanding;
Respond to questions in straightforward, easily-understood language, avoiding clichés, euphemisms and rehearsed answers;
Strive to give answers that dispel fantasy and encourage reality;
Make distinctions between physical and spiritual aspects of death;
Acknowledge that nobody knows all the answers. (Brown, 2018).
Factors Impacting Sibling Grief and Coping
Acorns Children’s Hospice work with bereaved siblings (2008) suggested that many of them experience intense anticipatory grief before their brother or sister die and that it is likely that they will continue to grieve for the rest of their lives. Interrelated factors contribute to sibling grief. These interrelated factors may be summarized as:
The Individual Child - age, gender, place in sibling hierarchy, personality, coping strategies and past encounters of loss and change contribute to how siblings cope. The relationship between the ill sibling and well sibling is also important (Aldridge, 2007, Slaughter and Lyons, 2003).
“My sister is different from me but very special and I love her for that”. (SOFT UK sibling)
Family Situation – the duration of the sibling’s illness, and how well siblings are included in the family situation are important factors in children coping. The culture, values and family lifestyle both before and throughout the duration of the sibling’s illness, need to be taken into account (Stokes, 2007; Brown, 2012; Davies, 2002).
“We have already planned my brother’s funeral. It will be bright with lots of colour and rock and roll because that is what he likes. We have lots of parties in our family. We want to make the most of everything whilst we can.” (Acorns Children’s Hospice sibling)
The Home Environment – The physical environment of the family home, family communication styles and parental adaptation to a situation play a large part in siblings’ experience because children are dependent on their families for the information and the support they receive (Slaughter and Griffiths, 2007).
“She passed away in the hospital, but I was not there at the time. I was fast asleep, and I was so tired, but I was forced to wake up. I was told that my sister was really not well, and that she was very bad. So, we went to the hospital to see her and it was then I was told that she had already passed away. Mum and Dad told me. Before we came to the hospital my cousins already knew but they just didn’t tell me because they were told not to. I was so upset about it.” (Acorns Children’s Hospice sibling)
Bereaved Siblings
A reflective diary kept at SOFT UK annual Family Days suggests that there are four important areas to consider in relation to bereaved siblings:
Recognising sibling grief as a normal human response;
Helping relieve the sense of isolation felt;
The importance of providing a ‘safe’ environment for siblings to talk about their experiences;
The importance of family communication.
1. Recognising sibling grief is a normal human response to loss
Most siblings experience and demonstrate many grief responses, but they do not necessarily express emotions in neatly ordered stages. Factors overlap and interplay to create a complex array of circumstances. All siblings will respond differently. Young children are often unable to sustain their emotions for long periods of time, needing to return to “normal” activities. Sometimes where a brother or sister’s illness has lasted a long time, anticipatory grief reactions may seem to escalate (Aldridge, 2007). If a brother or sister has already died, siblings may continue to think about them.
Boys and girls learn gender roles from a very early age and adult carers serve as models in behaviour. Often boys reflect the contemporary Western view of males as independent, assertive, dominant and competitive, compared with girls who have a tendency to be slightly more passive, sensitive and supportive in their social relationships.
Sadness and Depression
Distinguishing between young people’s sadness and depression is important. Children are generally able to talk or write about their situations and they may say that they long for the equilibrium of life to be restored to how it was before their brother or sister’s illness was diagnosed (Brown, 2018).
“We both wish we could come back to how it was. Unfortunately, that will never happen.” (Acorns Children’s Hospice sibling)
Children’s sadness may be accompanied by feelings of abandonment and low self-esteem. Younger children seem to feel left out of family events and often they receive less information about their brother or sister’s illness because they are considered too young to be included. Conversely, older siblings are sometimes given more responsibility than they can comfortably manage. Sometimes young people are able to name their feelings.
Young people who have grown up with a sibling with Trisomy are often painfully aware of the huge difference that practical help, or lack of it, makes to the whole family. They are often sad about the disadvantages without understanding the bureaucratic and administrative infrastructure that can get in the way of their needs being met. There are occasions where this sadness is manifested in somatic complaints or through disruptive or competitive behaviour at home or at school.
Problems at School
Many siblings speak about their situation and how it makes them feel different from their peer group. Sometimes they fall foul of sick jokes that are played on them, often relating to their ill brother or sister. School-related difficulties seem to be an indication of stress that some children experience. These difficulties range from concentration problems to a drop in academic performance. Teachers describe children as “sad”, “depressed”, “lonely”, “attention seeking”, “nervous” and “worried” (Brown, 2018).
However, problems do not always occur, and some older siblings still attain high grades in examinations although sometimes this appears to be because they impose very high expectations on themselves to spare their parents further distress and disappointment. In some cases, brothers and sisters speak of the difficulties they encounter trying to manage their behaviour or to form meaningful relationships with their peer group. There is clear evidence that some siblings are bullied because their contemporaries consider them to be “odd” or “different” (Brown, 2007).
“I have been bullied. The difference with me is, because I have a sister with severe disabilities, other people see this as a weakness and exploit it”. (SOFT UK sibling)
Behavioural Changes
Some children show greater changes in their behaviour than others. Younger siblings may respond by behaving badly. Parents may find this particularly challenging because their own emotional resources are often already stretched to the limit. It is extremely important to set consistent boundaries and to reward positive behaviour as well as encouraging ways for the safe expression of anger. Sometimes siblings’ feelings may be so overwhelming that they do not know how to cope and there is some evidence of risk-taking behaviour in older children (Stikkelbroek et al, 2016). Younger children can find it difficult to describe how they feel and their peers may find it hard to understand them. Thus, there will be occasions where siblings become isolated from their peer group (Brown, 2018).
Crying
Tears are a normal expression of sadness and it is thought that crying is an important way of grieving (Stokes, 2007). However, some children do not seem to feel the need to cry. Others hold back because they do not want to upset people or they are embarrassed that tears might be construed as weakness. Sometimes whether they cry or not seems to relate to how emotions are expressed within their family (Brown, 1999).
Loneliness
Research into brothers and sisters’ relationships characterises siblings as attachment figures, playmates, protectors and antagonists (Davies 2002). Through shared experience siblings have the potential for giving each other tremendous emotional support and companionship. Being part of a family where there is a child born with Trisomy can be lonely. For siblings who have already enjoyed shared times with their brother or sister but are now unable to do this because the illness has progressed, the feelings of loneliness are enormous. Siblings may be protective of their ill brother or sister and of their parents. They speak of not wanting to burden them with their own worries. Sometimes they find it exceedingly hard to engage in enjoyable activities, perhaps believing that they do not have a right to enjoy themselves.
Guilt
Although young people do not generally refer to feeling guilty this does not mean that feelings are absent. It is important to affirm that past thoughts or behaviour were not responsible for their brother or sister’s condition, or their death.
Often older siblings develop a sense of responsibility for the well-being of the adults in their family in an attempt to alleviate their parents’ pain and sadness. They may feel a heightened sense of responsibility for younger, well brothers or sisters. Hopes for the early death of a sibling are not unusual although generally this is because brothers and sisters do not want the sick sibling to experience any more pain or suffering. If they do talk about guilt, the feelings they have are very difficult for them to handle. Sometimes emotions are so intense there is a tendency for them to blame other people for how they feel.
Psycho-somatic responses
Physical aches and pains and broken sleep are commonly experienced. Very occasionally the pains are similar to those felt by their sick siblings. Feeling overtired is also common.
“I started having headaches regularly, especially when I had to go to school”. (SOFT sibling)
“I can remember feeling a heaviness which crept through me and I kind of existed as if I were treading through treacle. My whole body ached from the weight of the burden I carried.” (SOFT UK sibling)
Low self-esteem
Siblings may feel that their ill brother or sister is their parents’ favourite child and therefore whatever they do falls short of their parents’ expectation. Some siblings may try to be good all of the time, constantly endeavouring to do more, trying to prove that they are worthy of love and affection (Together for Short Lives, 2013).
The sense of isolation felt by siblings
Having a child with complex health issues can turn family life upside down. Parents may become overwhelmed with their grief and exhausted through trying to care for their other well children. Siblings may feel suffocated by the constant flurry of activity in their homes and the intensity of the emotion that surrounds them (Together for Short Lives, 2012).
“Sometimes I was jealous of him as he had people coming to see him all the time”. (SOFT UK sibling)
Siblings may feel they do not know what to do. Sometimes they want to be involved in helping to look after their sick sibling, but they do not feel they have the skills needed. If they do try, their efforts do not always seem to be appreciated. As a result, they feel on the edge of what is happening and that they are no longer an important part of the family unit (Brown, 2018).
“I would love my Mum and Dad to spend more time with me, but they are always so busy”. (SOFT UK sibling)
Fathers are described by siblings as becoming involved in their work, withdrawn and becoming very, very tired. Some siblings are aware that the relationship between their parents is strained and perceive this as being the result of each individual parent coping in a way that conflicts with the others. Meeting others in similar situations is enormously helpful and the common ground of the experience is more significant than differences in gender and age.
Often the relationship between the sick sibling and the well brother or sister is intensified. Some sick siblings may be the well sibling’s closest friend. For younger children who have not formed friendships with their peer group, the anticipated loss of their brother or sister means they will lose the only friend they have. Memories of past shared times may be centred on these close shared experiences. The loss of intimacy experienced may be irreconcilable (Portnoy and Stubbs, 2012).
Creating a safe environment for siblings
Being argumentative, attention seeking, disobedient and moody may occur at varying levels of intensity. Sometimes these feelings can overwhelm young people. As they struggle to cope, they become angry because they are unable to contain their feelings of loss and frustration. Many young people have a sense that other catastrophes might strike at any time and sometimes this includes fear of early death for themselves. Sometimes sibling changed behaviour results in a breakdown of relationships with adult care givers and their peer group. Occasionally young people withdraw from the situation altogether and absent themselves from school or their family.
The strategies that children use to manage their emotions are strongly influenced by the way in which adults interact with them (Lapwood and Goldman, 2012). Where parents encourage siblings to express their feelings, they tend to feel safer and to experience an element of comfort in their grief. Conversely, if well siblings perceive that it is unacceptable to express their emotions, they stifle their feelings. Where parents are able to communicate to their children how much they love and care for them, children generally respond positively (Portnoy and Stubbs, 2012). Young people refer to being isolated and feeling that they are the only one:
“So, left out all the time. Mum doesn’t let me help. So much paperwork”. (Acorns Children’s Hospice sibling)
Many children with Trisomy need medical equipment, mobility aids and nutritional and continence supplies. Well siblings often accept the practicalities of living with a family member with complex needs, but these still impose difficulties and limitations in respect to every-day living. They also influence the way in which they view the appearance and homeliness of where they live. Home is no longer a private place for many young people, and this affects them and the way they live. Furthermore, they may feel that their own personal space and activities are always under scrutiny (Together for Short Lives, 2013).
“There were always a lot of people coming into our house to help my parents look after Sarah, sometimes I felt my room was the only place that I could get some privacy”. (SOFT UK sibling)
The Impact of Bereavement (Lived Experiences)
In 2018 a small-scale research study was undertaken to explore the experiences of bereaved SOFT adult brothers and sisters. This was the first study of its kind in the United Kingdom which enabled young adult siblings to share their previously untold stories. A common theme in siblings’ accounts was the journey from the sibling’s diagnosis to their death which involved anticipatory grief. Narratives included reference to the experience as akin to enduring turbulent weather, like an unremitting storm.
“After my mum was told that she was carrying a damaged baby she decided to continue with the pregnancy even though we knew that he would probably not survive his birth. I remember wondering why she had made the decision she had. Waiting was unbearable, simply unbearable – we felt as if we had been shipwrecked in a storm.”
Affected siblings were often likened to a hero or heroine and they were commonly described as possessing a likeable personality and demonstrating outstanding resilience and bravery. Two sibling accounts suggested that their brother or their sister had been elevated by their parents in ways which meant that bereaved siblings were unable to attain the same levels of perfection.
All the siblings recalled how the diagnosis of their brother’s or their sister’s brief life and death had affected family cohesion and relationships. Of significance are memories which tell how mothers and fathers coped and how grandparents often took on child-minding roles because parents struggled to cope with everyday routine tasks.
“The day she was born my grandma moved into our house and she just took over doing everything. I can remember my mum was so bereft that she couldn’t even load the washing machine. I also remember how my grandma appeared to become a little old lady overnight”.
Interviewees who were very young when their sibling died, were unanimous in remembering the confusion they felt when they were either told or discovered about the baby’s death. Stories contained detailed accounts, etched in their memory.
“My mum took me to buy a present for my sister. I chose a little fluffy lamb and we tied a pink ribbon around its neck. I can still remember going to a place with a huge wooden door and my dad picking me up so that I could put the lamb in the crib. I wanted her to play with the lamb, but she didn’t move. We waited for ages, but she wouldn’t (I now know that she couldn’t) wake up. I was angry because I would have liked the toy, but we had to leave it for a baby who didn’t want to play. To this day I cannot recall being told that my sister had died.”
“I was really looking forward to being a big brother. My mum came home from hospital without the baby and I think my dad told us that the baby had gone to heaven. Then my uncle came and changed the nursery back into my bedroom. I was glad about that, but I wondered why the baby had escaped to heaven. I was only four years old.”
Five of the participants described how their family had struggled to adapt to the diagnosis and death of their sibling. Narratives contained language such as ‘fought to cope’, ‘battled on’, ‘grappled with living’. Secondary losses following the death of their sibling such as moving home and breakdown of parental relationships appeared to exacerbate distress. However, having secure attachments to adults in the family was deemed to be important. In families where there were other siblings this was also described as helpful especially in opportunities to play and enjoy social activities.
Bereavement had threatened family identity for all the participants. Two of the siblings had struggled, having anticipated life with a new baby in their family only to be shattered by their sibling’s death. In one case, a sibling had looked forward to being a ‘big brother’ and the stillbirth of the baby had caused him to contemplate ‘whether I was still considered to be a brother (even though my baby brother died) or, whether I was now destined to be an only child’. It is also important to note six of the siblings remarked how distressing it was if people who were unaware of the family’s circumstances asked about how many brothers or sisters they had. One sibling noted that ‘there are words for bereaved spouses but not for a bereaved brother.’ His narrative suggests that he may view his grief as unacknowledged or, ‘disenfranchised.’
“At the time of my wedding my elder sister was away travelling, and I distinctly remember my aunt saying that it was a shame my sister couldn’t share our happiness. I remember wondering which sister she meant, or even if she knew about our ‘lost’ baby.”
The impact of the experience on siblings’ life philosophy
Nine of the participants included reference to how the experience of having a brother or a sister who had died had impacted on their philosophy of life. Three female siblings and one male sibling spoke at length about how the experience had impacted on their thoughts about parenthood. These young adults viewed prospective parenthood with apprehension and those who had children of their own, spoke about added anxiety.
“I think being a sibling has made it difficult for me as I associate having kids with a lot of stress and that’s put me off if I’m honest. I can’t imagine combining my life with a child’s life because I’ve only experienced a child taking over my parent’s life.”
“I worry that I might have an affected baby. But if this happened, I would go ahead with the pregnancy because I think I could cope.”
‘My professional pathway has been influenced in part by who I have become since I have become a bereaved sibling.”
Despite experiencing their own grief and witnessing parental distress, the siblings were unequivocal in their view that having hope for the future had helped them develop what they described as ‘stubborn determination to look towards a future’ and ‘hope that my sister’s death would count for something.’
Where siblings had expected that their brother or their sister would die of their diagnosed life-limiting condition, their stories suggest that because they were afforded time to adjust to the inevitability of the situation, this was helpful in how they adapted to their grief. In some cases, grief-stricken parents had unintentionally failed to recognise their children’s grief and thus their loss was disenfranchised.
However, far from losing a sense of meaning and purpose in their lives, and without adult support or counselling intervention, the siblings had succeeded in working through the emotional pain of their loss. They had adjusted emotionally and cognitively, incorporating the experience and their changed place in their family hierarchy into their present and future lives. Furthermore, rather than severance of the relationship they had once enjoyed with their sibling, brothers and sisters had found ways of maintaining a continuing bond. In two cases, a sibling had continued a dialogue with their brother in the privacy of their bedroom which they had not revealed until they told their stories. Some siblings, who had found out about their brother or sister through discovering a birth certificate or picture, covertly used creative play in an endeavour to restore a sense of equilibrium in their lives.
Key Points
A child’s understanding of death may depend as much on past experience of loss and change as it does on their chronological age.
The way in which children are helped when sad things happen may have a profound effect on how they are able to adapt to loss and change throughout their lives.
Children who know they are having information withheld from them may feel alone, deceived and vulnerable.
Parents are important role models in affirming their child’s response to the sibling’s illness.
Siblings are likely to be anxious and they may communicate this verbally, through play, writing, drawing and the expressive arts.
Sibling grief needs to be considered in the context of the whole family’s grief.
Older children may develop a sense of responsibility for the well-being of adults in the family and for younger siblings.
Preparing siblings for the death of their brother or sister may be beneficial in helping them to adjust to the reality of the situation.
Being able to talk to other children in the same situation as themselves may decrease the sense of isolation experienced by siblings.
Being the sibling of a life-limited or life-threatened brother or sister does not necessarily result in unresolved grief.