3.3 Bereaved Children and Young People: Guidance

Loss and bereavement are an inevitable part of our lifecycle. During childhood and adolescence some children will experience the death of someone they know. By the age of 16, it is estimated that 4.7% or around 1 in 20 young people will have experienced the death of one or both of their parents. Most will be supported by family and friends, so that their grief takes place within a nurturing framework; promoting healthy development into adult life.

Some children have particular needs which arise as a result of bereavement. For example, some children may enter the ‘Looked After’ system because they have lost a parent; some are bullied because of their bereavement; and some families may face financial difficulty and may experience housing or other problems as a consequence of such a loss. In these cases, a coordinated multi-agency response is required to deal sensitively and effectively with each particular situation.

Lessons from Serious Case Reviews in Buckinghamshire have highlighted the need for us all to take the bereavement of young people seriously and consider, in particular, the additional risks that grief can introduce to those already in vulnerable circumstances. This finding mirrors research that found those who experience multiple bereavements, or bereavement alongside other difficulties, are statistically ‘at risk’ of experiencing negative outcomes in areas such as education, depression, self-esteem and risk-taking behaviour later in life.

This guidance is to help staff recognise and respond appropriately when a young person is grieving.

The more ongoing proactive support that is given across a whole community, the more likely children, young people and their community will show good resilience to the impact of events involving loss and bereavement, and will not require longer-term additional specialist support. Appropriate support is therefore best provided proactively in anticipation of events, and also as immediate and longer-term response to events.

Some guidance on responding to bereavement is provided below. A list of national organisations that can provide support is also provided at appendix A.

Early assessment of needs 

Where bereavement for a child or young person is known or anticipated:

• Is the child receiving, or is likely to receive, sufficient emotional support from close family and friends who will be available before, during and after the death?
• Does the child knows about the anticipated death and understand the implication of death?

If the answer is yes to the above questions:

• offer continuation of existing services, which includes a sensitive response from your own organisation to the known or approaching loss, and signposting to other available bereavement advice and services for both child/young person and family if required
• where appropriate, and with the family’s agreement, alert other key services involved with the child
• the child/young person, parents, siblings and other significant relationships should be provided with contact details for local bereavement services. If needed, offer to initiate contact on their behalf
• the needs of the child and family should be checked from time to time, as early coping skills in response to the unexpected death might not be sustained in the longer term.

If the answer is no, consider the options outlined in below.

Complex needs (including Looked After Children)

1. A child/young person will have additional or more complex needs in the following circumstances:

• multiple bereavements/losses
• young carer
• looked After Child (in public care)
• mental health issues
• pregnancy
• disability/special needs
• homeless and/or hard to reach
• self-harming behaviour
• parents/carers with mental health, domestic abuse, substance misuse, self-harming/suicide issues
• parental illness.

       2. Where the needs are more complex, as listed above, or in situations where the family are unable (perhaps due to their own grief) or unavailable (due to physical absence), advice can be sought from the CAMHS Single Point of Access (01865 901325).

Violent or other traumatic death

In addition to the complex needs listed, some deaths are likely to present much deeper trauma for the child and family, e.g. murder, multiple family deaths from accidents, deaths witnessed by child/young child, major incidents.

In such cases, specialist trauma and bereavement services should be sought via Oxford Health NHS Foundation Trust by contacting the CAMHS Single Point of Access (01865 901325)

Adults can play a vital role in preparing themselves and the young people they work with in the following ways:

• Developing staff and parents/carers confidence, knowledge and skills through training and providing information.
• Developing children and young peoples’ understanding of death and loss, including strategies to support themselves and each other, and vocabulary to express and discuss feelings. This can be done through existing school and children’s centre curricula or play activity approaches.
• Developing peer support groups.

Children and young people of all ages who have experienced a death indicate that they prefer to be supported by known adults and older peers rather than someone who is unfamiliar. Professionals can be effective by working together with the child’s parents, carers, school staff, etc to help them support the child rather than directly with the child themselves. However, it can sometimes be helpful for children to talk to someone out of the family who is not affected by the sadness.

It may be helpful to go through the following information with adults or older peers who may need to help a bereaved child – to help raise their confidence that they have the skills to do this:

• Each child and young person can have a unique response to grief, depending upon their individual circumstances, their stage of development and the emotional and practical resources that are available to help them. It is important that children and young people are allowed to grieve and reflect upon their loss in their own way that will enable them to make sense of it. Care should be taken to respect, and be aware of, the beliefs and cultural background of the child and family. Where there are potential conflicts between the beliefs of the child and the professional supporting the child, these need to be discussed and addressed in supervision so as to fully support the child or young person effectively.
• Raise the subject yourself, e.g. ‘I am so sorry to hear about… how are you feeling?’. It can be much better than saying nothing, while also recognising that sometimes a child might need to be silent for a while.
• Spend time with the child and listen to what they have to say.
• Give the child immediate and accurate information.
• Help the child to find appropriate ways to express their feelings. Children need acceptable ways to express anger and other feelings, e.g. physical exercise, shouting, noisy play, punch bag, drawing, keeping a journal of thoughts and feelings.
• Children often think they are to blame for a person’s death, for example because they have misbehaved or thought about them negatively. Explain that something else caused the death and it was not their fault.
• Take the child’s ideas into account when planning what to do. Involve them in funeral arrangements wherever appropriate.
• Give time for proper understanding, to help them to process the information and its implications.
• Reassure the child that whatever they are feeling is okay. People have many different reactions to death and all are normal and natural.
• Try to keep continuity with routines and avoid any unnecessary separations.
• Don’t tell children or young people to be brave or to be the ‘man/lady of the house’. This will put unnecessary pressure on them and worry them with unrealistic responsibilities.
• Don’t make assumptions about the importance of the loss/bereavement to the child, e.g. the death of a pet can be significant.
• Ensure the child has access to personal items, now or in for the future.
• Emphasise the importance of continuity of support.

There are some reactions which start to cause concern, for example because they continue for some time and appear to be increasing rather than diminishing. These need to be acted upon and the help of specialist services may need to be considered. Professionals should follow the usual procedures where they have a safeguarding concern (see What to do if you have a Concern about a Child in Buckinghamshire).

The following (non-exhaustive) list of warning signs should be taken together with an assessment of what else is happening in the child’s life:

• avoidance of friends and family
• always tired and/or ill
• school problems/difficulties
• self-destructive behaviour
• desire to die
• persistent feelings of worthlessness and guilt
• continual denial of the reality of the death/loss
• experiencing prolonged low mood, depression and/or anxiety
• aggressive behaviour
• Increased reliance on alcohol/drugs
• eating disturbances.

A number of factors are known to make young people’s bereavement more difficult. These include having an ambivalent relationship with the person who has died and having little support available.

Following a traumatic bereavement such as suicide or murder, young people can develop a variety of traumatic stress reactions which may inhibit their grief.

There is increasing evidence that bereavement in circumstances that are already disadvantaged, can increase young people’s vulnerability to mental and emotional health difficulties, self-harm and risky health behaviours.

Vulnerable young people are over-represented among children in care (Looked After Children). The Child Bereavement Network (CBN) in a UK study cited drug and alcohol misuse and other risk-taking behaviour, poor general health, severe emotional and mental health problems, domestic violence and involvement in crime, as contributing factors to higher mortality rates – and greater proportions of sudden and traumatic deaths among the birth families and friends of Looked After Children. Some of these factors are similar to those that could have led to a child or young person becoming looked after in the first place.

In addition, some children and young people come into care because of the death of a parent and absence of other family members to look after them. This highlights the importance of planning for the care of children and young people who experience the death of a lone parent/carer.

The CBN study described children and young people’s feelings, such as aggression, being withdrawn, self-harming, suicide, eating disorders, incontinence, vomiting clinginess, poor memory and, in some cases, symptoms of post-traumatic stress disorder.

Children in care experience a variety of separations and losses in their lives. These losses can make the impact of the death of someone close to them more acute.

Problems with contact can mean that a child doesn’t have time to prepare for a death, even when others are expecting it.

In addition to the issues faced by children who are Looked After, a secure setting can bring additional challenges that affect their experience and ability to access support for bereavement, including:

• loss of liberty and freedom
• relationships (with boyfriends/girlfriends, friends, family and pets)
• privacy
• choice (not seeing family and friends when they want, not being able to eat what and when they want)
• interaction within the community
• social life.

Many of these losses thwart the coping strategies and emotional reliance that children and young people might otherwise use to get comfort and reassurance at times of great stress, such as when someone close dies.

Children and young people in secure accommodation are likely to be placed some way from home, making it more difficult for them to be involved in any family remembrances and funeral arrangements.

“My Gran died five months ago. I was not allowed to go to the funeral even though it meant so much to me to say goodbye… I should have been allowed to go to the funeral. I will never get my chance to say goodbye now, and I am really angry about that”.
Young woman in a medium secure psychiatric unit. CBN study.

Following a traumatic experience, such as witnessing an accident, or even the murder of one parent by another, children and young people may develop a variety of stress reactions. These can include intrusive thoughts about what has happened, flashbacks, separation difficulties, problems concentrating, difficulties in talking with parents, carers and friends, and heightened fears and anxiety about safety. Studies suggest that children and young people who are bereaved through the murder or suicide of a parent are at greater risk of depression and post-traumatic stress disorder.

Asylum-seeking young people are also likely to have experienced multiple losses, including separation from family and often the death of someone close to them, which they may also have witnessed.

Language and cultural difference can make it difficult for young people to talk about their fear and anxieties that they may feel in their new and often uncertain circumstances. It is not uncommon for these young people to experience symptoms of post-traumatic stress disorder.

In some cultures, mental health difficulties are understood and dealt with differently, so some young people may not be interested in a referral for counselling or other support. This does not mean that their bereavement needs should not be assessed in the same way, but the response should be even more sensitive to their background and understanding, which may differ from Western perspectives.

The emotional and practical needs of asylum-seeking young people may be overwhelmed by the need to get used to their new life. Great care should be taken to ensure that bereavement, amongst all these other stresses, is identified and given sufficient attention.

For children and young people with learning disabilities there may be additional considerations related to the disability itself and the attitudes of others towards their disability. This has been described as the ‘double taboo’ of death and disability (M Oswin, Am I Allowed to Cry? Study of Bereavement Amongst People Who Have Learning Difficulties, 1991). People with learning disabilities are often protected from the true impact of death, by well-meaning carers who want to minimise their distress.

Over-protective attitudes may not help bereaved children/young people to accommodate their grief, e.g. if they are not encouraged to say goodbye to their loved one, not invited to attend the funeral, or in some cases not even told about the death when it occurs.

Like all children and young people, those with learning difficulties do not need protection from the feelings and emotions associated with grief, but support and help to express them, and reassurance that these sometimes powerful and overwhelming emotions are normal and necessary.

Bereavement affects people in different ways, and familiar carers might offer a strong sense of social support, while also having a pivotal role in anticipating identifying and acknowledging individual response and the need for additional specialist input. Support at this time is crucial, both to bereaved people and those responsible for their care. Service providers need to be mindful of the importance of support at such times, and that such support may be needed in the short and long term.

By identifying, acknowledging and addressing such challenges in an open, honest and sensitive way, carers can help the child/young person with a learning disability to confront and deal with the sadness and other associated feelings following the death of a loved one.

When death and bereavement is dealt with in a supportive, sensitive and consistent way, all children/young people may learn to develop personal coping strategies and learn to cope with future losses in a more constructive manner. Meaningful support is crucial to this process.

Children with learning difficulties may find the concept of death and its permanence particularly difficult to grasp and will benefit from simple, practical examples to illustrate the difference between dead and living things.

However, visiting a graveyard can be especially confusing for children with learning difficulties due to the lack of visual evidence as to exactly where the dead body has gone.

Children with learning difficulties may have less vocabulary and tend to express their feelings even more through behaviour rather than words.

In working with bereaved children/young people, opportunities for helping to capture memories that are meaningful for them should always be considered. For Looked After Children, obtaining a thorough ‘life story’ for the child will be a priority piece of work within the care plan itself, but all children/young people can benefit from someone helping them to capture objects or moments in their history.

Cultural and religious customs, particularly around death, should be taken into consideration. Workers should seek advice where needed and take care not to impose their own customs.

Where death is anticipated, the child can be helped to identify and communicate things they may want to say to, or do with, the person they are going to lose. This may include having some pictures taken together and/or a film; writing them a letter or poem; giving each other a lock of hair. In conversations or other communications, the child might want to think about any questions they want answered.

If the death was unexpected, staff may need to give consideration to who else in the family or community might be able to supply the child with relevant information and objects.

Thought should be given to whether it is appropriate and helpful for a child to be given the opportunity to see the deceased person before burial or cremation. This is an area where there can be well meaning, but considerable debate, particularly among family members. The child/young person’s wishes should be sought and communicated to those making arrangements. Like adults, some children may want to remember the lost person as they were, whereas others will find that seeing the deceased person assists them in accepting the reality of their loss.

The child could be asked whether they wish to have a relevant piece of jewellery, clothing, lock of hair etc following the death.

Regarding attendance at funerals, staff should respect the wishes of the family concerned, but keep in focus the support and involvement that the child or young person might need. This might mean speaking on behalf of the child/ young person when they wish to be involved in attending, or making arrangements for, the funeral.

If they are attending the funeral, the child might benefit from being accompanied by a member of staff, particularly if the family are absorbed by their own grief. Such arrangements will need to be discussed sensitively with those arranging the funeral.

Talking to a child or family about the death of someone close may be hard for staff to do. Supporting a child experiencing loss or bereavement can be exhausting and possibly bring back painful memories. Staff should talk to other team members and their line manager if they need support.

If a staff member has suffered a recent bereavement themselves, it is advisable for them and for the bereaved child/young person that they discuss the appropriateness of this piece of work with their line manager. If they are already working with the child/young person, a sudden retreat might of course reinforce their feelings of loss. Support from someone to work alongside them for certain tasks might prove a better solution.

Employers have a duty of care to their staff. The provision of training can enable staff to operate in this highly sensitive area and ensure quality of care for those who are bereaved. The provision of support for staff who may be adversely effected by their exposure to traumatic deaths, and to grief which may be emotionally draining, will be essential to enable them to continue to function effectively.

Staff members may carry their own grief and bereavements, which may influence how they react to any related circumstance. It is essential therefore that support/supervision takes into account the past experience of the individual and recognises the need for self-awareness and reflection on their history. Support/supervision should take this into account and help staff to recognise the need for self-awareness and reflection.

Training and guidance for staff should include identified core elements:

• emphasis on the normality of grief
• considering three stages of care: before death (where this can be anticipated); around the time of death; and following the death
• communication skills, including the management of distress.
• recognition of risk factors
• self-awareness and reflection.

High-risk cases should be identified and prioritised for regular support/supervision.

Support for staff should be provided by creating a culture of ‘checking out’ that staff are coping. Where possible, sensitivity should be shown to staff by not exposing them to very stressful deaths within work too soon following a personal bereavement.

A supportive culture needs to be created within each organisation to facilitate staff coping with bereavement especially in traumatic situation.

Internal provision of support by the organisation is encouraged, but staff should also have the opportunity to access employee counselling services where necessary, or preferred.

A resource list of where to access support should be available for managers and staff.