Helping families in times of need

words: Ann Chalmers, Child Bereavement UK

Every year in the UK, thousands of families experience child bereavement and how their grief is managed and supported, including their interactions with the professionals they encounter, has a profound effect on the family’s ability to adjust to their forever-changed life.

Child Bereavement UK supports families and educates professionals both when a baby or child of any age is dying or has died, and when children and young people up to the age of 25 are facing bereavement.

This year, Child Bereavement UK marks 25 years of helping families rebuild their lives after the devastation of child bereavement. At the heart of the charity’s work over these 25 years have been those bereaved families, the true ‘experts’ in their grief, and it is the continued learning from those families and their experiences that underpins all the charity’s work.

They have taught us how solitary grief can be and that even when others around them are grieving, they can still feel so alone and isolated. They have taught us that their grief is often invisible, with no overt long-lasting outward signs that say ‘fragile – handle with care’. And they have taught us that grief can have lifelong repercussions.

When a baby or child of any age dies or when a child is bereaved of a parent or a sibling, or someone important in their young life, there is no doubt that lives can be completely shattered. These untimely deaths of children and of parents each bring their own complexities, but the families we have the privilege to work with teach us that, with right support and guidance at the right time for them, they can be helped to pick up the shattered pieces of their life as they knew it, and to begin the long journey of rebuilding after the devastation of a child’s or parent’s death.

When a child dies

It is seldom in any parent’s expectation that their child will die before them, and these deaths are totally contrary to the natural order we expect life to follow. When a baby or child dies, at whatever age, parents often describe losing a part of themselves and their natural instinct to protect, to parent and to be concerned for their child is not extinguished by the fact of their child’s death.

Parents tell us acknowledgement is everything and that avoiding the subject feels like a denial of their child’s existence. The majority of child deaths happen at, around or within a few weeks of birth, when the child’s life has barely begun. Yet a little amount of life can never be assumed to equate to a little amount of loss and the unfulfilled hopes, dreams and ambitions for their child are a significant element of parents’ grief, at whatever stage their child dies.

Acknowledgement of the significance of their loss and having the opportunity to express their feelings without judgement are important aspects in supporting bereaved parents. Referring to their child by name is just as important after death as before.

The tasks of accepting the reality of their child’s death and adjusting to life without their child are huge. Parents are likely to revisit their grief at what would have been significant milestones in their child’s life, and each time this happens a different aspect of their loss will be brought sharply into focus, requiring further adjustment.

The death of an adult child brings its own complexities. Bereaved parents often find others expect their grief to be less than if it had been a younger child who died, and they may therefore experience a lack of acknowledgement and support and may not have the involvement they would like in the arrangements following the death. In situations where the son or daughter who died had a partner or family of their own, the parent’s grief can be seen as secondary to those family members. They may need to take on the role of parent to grandchildren or conversely may experience further loss in losing touch with their grandchildren after the death.

A sense of ‘survivor guilt’ can be very real as bereaved parents struggle to make sense of the way in which the natural order of things has been inverted.

For a couple, the death of their child is the one loss in which they will be equal partners; however, the way two people in a relationship deal with their grief can often differ and this can put a strain on a couple’s relationship. They will each have had their own unique relationship with their child and may have different ways of expressing their grief.

One partner may have a natural tendency to focus in on the loss and their emotional response, wanting to recall and share their memories and feelings and talk about their child who has died. In contrast, the other may cope by trying to return to ‘normal’ as much as possible, instinctively suppressing their emotions and looking to the future.

These different responses can lead to misunderstanding in a couple – but both are important aspects of how we grieve as individuals, moving between our need to focus on the person who has died and express our emotions and our need to find some respite from grieving and get on with living. Partners often need help with the aspect they are not naturally so good at, and our work with couples encourages them to communicate and understand each other’s perspective without judgement.

When a child is bereaved

At Child Bereavement UK, we believe that all children have the right to information, guidance and support in facing the impact of death in their young lives.

The way in which children react and make sense of a death in the family will be influenced by their stage of development, their life experience, their family’s culture and spiritual beliefs, and the support available to them. No child is too young to be affected by the death of someone close; even very young children, who may not understand what has happened, are likely to be impacted by the sadness and depth of feeling of those around them.

Children acquire an understanding of death’s permanence, its irreversibility and its universality as they develop through childhood. Adolescence, as a particular period of turbulence and transition for young people, can be an especially challenging time to experience bereavement.

As adults, our instinct is to protect children, but all too often children tell us that protection feels like exclusion. Children need age-appropriate information and explanations if they are to make sense of what has happened when someone important in their life dies; what younger children do not know, they tend to make up and their imagination can take them to a place far from reality. Children need clear and honest communication, avoiding euphemisms which, when interpreted literally, can lead to confusion. Children can overhear adult conversations and often instinctively know when something is wrong; they tell us it is the not knowing that can leave them frightened, anxious and insecure. The repeated questions of younger children are often their way of checking out the reality of what has happened, or of gaining more information over time as their level of understanding develops. What matters is that we respond to children on their timescales: if they are asking a question, then they are likely to be ready to hear the answer. If we fail to take that opportunity, it may be lost.

The more central the person was in the child’s life, the more significant the impact of their death will be. Children need opportunities to express their feelings with trusted adults in a safe environment, although they may not have the adult vocabulary of grief at their disposal and their feelings may therefore be acted out in their behaviour or play. They may also quite naturally try to protect the adults around them by not showing their feelings, which can be misinterpreted as a sign that they are largely unaffected by what has happened. Children grieve by switching in and out of feelings, often not staying with difficult feelings for very long.

As they strive to make sense of what has happened, it is not uncommon for children to feel they were in some way responsible for the death and it can therefore be important to provide overt reassurance that they were not to blame. They may need more physical comfort than usual, and familiar routines and to continue with a normal level of discipline and boundaries can be key to helping them feel safe and secure at a time when ‘normal’ family life as they have known it has been disrupted.

Children also revisit their grief and reach new levels of understanding as they mature and go through significant milestones in their life without the important person who has died. Memories are kept alive by being recounted and these can then be integrated by the child into their own life story and experience.

The premature death of a parent or sibling leaves children bereft and surviving parents struggling to manage their own grief as well as that of their children. It can be especially difficult for a grieving parent to manage their children’s grief alongside their own. One of the most effective ways to help bereaved children and young people is to support a surviving parent or parents in understanding children’s needs and responses in bereavement.

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