12 Loss, grief and bereavement

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Contents

• Objectives
• Introduction to loss, grief, mourning and bereavement
• The grief process
• Supporting families in their grief and bereavement
• Children and grief
• Supporting children after death
• Memory making
• Case studies

Objectives

When you have completed this chapter, you should be able to:

1. Understand the meaning of loss, grief, mourning and bereavement.
2. Be aware of the stages of grief and the tasks of mourning.
3. Appreciate the difference between the ways adults and children experience grief.
4. Understand how children experience grief at different ages.
5. Describe ways to help children grieve at different ages.
6. Understand anticipatory grief and how to manage it.
7. Understand complicated and delayed grief and how to manage them.
8. Appreciate the importance of memory work.
9. Describe ways to support families through grief, loss and bereavement.

Introduction to loss, grief, mourning and bereavement

The death of a child can be described as one of life’s most devastating experiences, affecting parents, siblings and a wider circle of relatives and friends. The death of a child is never easy, but the circumstances of a child’s death can affect how the family respond to their grief.

It is important to understand the differences between loss, grief, mourning and bereavement and other grief terms such as anticipatory, complicated and delayed grief.

12-1 What is loss?

Loss means that you no longer have something. In children’s palliative care, feelings of loss may occur:

• At the time of diagnoses of a disease
• When treatment fails
• At the time of a child’s death.

There are primary (initial) losses and secondary (later) losses:

• Primary losses are experienced at the time of diagnosis when the bad news is first received, such as the possible death of your child and the devastation that would cause.
• Secondary losses are the losses you experience as the reality of the situation hits and as the disease progresses. Examples of these kinds of losses include the loss of hopes for your child’s future or watching them lose the ability to walk or talk.

Loss is linked to change. Change in the present, or possible future change, often leads to a sense of loss.

Loss could include losing a child’s good health or future hopes for your child.

12-2 What is grief?

Grief is what the person experiences as a result of a loss. It is what a person thinks, feels and experiences in response to a loss, particularly in relation to the death of a loved one.

Grief is the person’s response to a death or loss.

12-3 What is mourning?

Mourning is the outward expression of one’s grief and what other people observe when someone is grieving. Depression, confusion and losing interest in some aspects of life can occur when a person is mourning. People mourn when they cry, talk or write about the death.

Mourning is the behaviour that people observe when someone is grieving.

12-4 What is bereavement?

Bereavement is the period of time after a deep loss. It can also refer to the emotional state a person experiences during the period of grief and mourning after a loss such as death.

Bereavement is a period of time during which the person is grieving and mourning a loss.

12-5 What is anticipatory grief?

Anticipatory grief refers to a feeling of grief occurring before an impending loss. Children can also experience anticipatory grief when they feel their death or the death of a loved one is near.

Anticipatory grief can occur at any time before the impending death of a person.

12-6 What is complicated grief?

Complicated grief is the increase of grief to the level where the person is overwhelmed, resorts to uncharacteristic behaviour or remains in the state of grief without progression of the usual mourning process.

Complicated grief is overwhelming grief or grief that does not progress through the mourning process.

12-7 What is delayed grief?

Delayed grief is grief that is temporarily ‘shelved’ or denied until something triggers a need to focus on it. Due to the fact that the grieving did not take place at the time or shortly after the death or diagnosis, the extent of the delayed feelings might be frightening and the causes of these feelings might not be immediately recognised because they occur sometime after the loss.

The grief process

12-8 What is the normal grief process?

Loss, death and grief are part of the human life cycle and affect us all. The way we grieve is an individual matter and is influenced by many factors. It is, therefore, important to remember that people will grieve in many different ways. There is no right or wrong or a specific timeframe in which a person should grieve because this will be influenced by the circumstances surrounding the loss or death.

12-9 What are the normal reactions a person may experience or display after a loss and while grieving?

A broad range of feelings, thoughts and behaviours can be experienced by the person who is grieving. Even though children will grieve differently to adults, they will still experience many of the same reactions and responses as adults.

The grieving person may experience any or all of the following:

• Physical symptoms such as a dry mouth, dizziness, loss of energy, loss of appetite, loss of sexual desire or ongoing nausea
• Feelings such as sadness, anger, despair, guilt, anxiety, tiredness, loneliness or numbness
• Behavioural responses and reactions such as crying, sighing, forgetfulness, irritability, withdrawn or mood swings.

It is important to understand the wide range of reactions and responses that are experienced as part of the normal grieving process.

12-10 Do you start to only experience grief and loss at the time of death?

No. These responses are experienced throughout the course of the illness and will extend into the period following the death. You may experience loss at many different times during the illness, for example, at the loss of someone’s wellbeing, and this causes you to grieve and exhibit signs of bereavement and mourning before their death.

12-11 Who is likely to grieve in the family?

The child’s illness and death will have an effect on the larger family group including the parents, the siblings, the grandparents, and the other extended family and friends. They will all be likely to experience grief in some way or another, depending on the relationship they have with the child.

The sick child may also experience strong feelings of grief as they think about their own impending death and the losses they have experienced due to their illness.

12-12 Who else may grieve the death of a child?

Healthcare providers and team members who have provided care for the child, particularly if they have done so over a long period of time, are also likely to experience feelings of loss and grief. The child’s school teachers, classmates and close friends will also grieve and may need to be supported through counselling.

12-13 What factors may have an influence on the normal grief process?

Many factors can influence how family members grieve. It is important to be aware of these, as a combination of these factors could make complicated grief more likely. Some factors that may affect the nature, intensity and duration of the normal grief process include:

• The relationship a grieving person had with the person who died.
• The cause of death. For example, the grieving process may differ depending on whether the person died suddenly or was ill for a long time.
• The grieving person’s age and gender.
• The life history of the person who is grieving, including past experiences with loss.
• The grieving person’s personality and coping style.
• The support available from friends and family.
• The grieving person’s cultural and religious or spiritual beliefs.

12-14 What are models of grief?

Models of grief are helpful in understanding different reactions which may be present during the journey through grief. However, models do not fit all people at all times. People live in different cultural contexts and have their own diverse belief systems. Models of grief can be used to deepen our understanding of what people may experience.

Common models or stages of grief include Elisabeth Kübler-Ross’ five stages of grief and William Worden’s four basic tasks of mourning.

12-15 What are Elisabeth Kübler-Ross’ five stages of grief?

In 1969 a Swiss psychiatrist, Elisabeth Kübler-Ross, identified five stages of grief. While helpful as a guide, it is important to note that not everyone experiences all five stages and they do not necessarily follow the given order. Some people can experience all five stages in one day and often swing between the stages. It is also important to remember that people go through these stages at every point of the illness and not only at the time of death. These five stages of grief are:

1. Denial and initial shock: Often the first reaction to a loss is a feeling of disbelief and numbness which can be expressed through phrases such as, ‘It cannot be happening to me.’ Denial and shock can help us cope, pace our feelings of grief and make survival possible.
2. Anger: Experiencing anger is normal, although the grieving person may be shocked by these feelings. The anger could be aimed at friends, family members, the doctors, the sick person, the dead person and at God. What is important to realise is that underneath anger is emotional pain.
3. Bargaining and guilt: People experiencing this stage will do anything if only their loved one is spared. They may attempt to enter into a deal with God to save their loved one or to postpone the inevitable. At this time, feelings of guilt are normal. The ‘if only’ thoughts experienced may cause a person to find fault in themselves and what they believe they may have done differently.
4. Sadness and depression: These emotions may involve withdrawal, loss of interest in activities, apathy, tearfulness and lack of concentration.
5. Resolution and acceptance: In time, the person learns to accept the loss and finds a way to rebuild their lives without their loved one.

Elisabeth Kübler Ross’ five stages of grief include denial, anger, bargaining, sadness and acceptance.

Note

It is important when using this model of grief that people are not labelled in terms of the stage or phase of grief they are experiencing e.g. ‘he is in the denial stage.’

Note

Dr Elisabeth Kübler-Ross was born in Switzerland in 1926 and moved to the USA in 1958 where she trained as a psychiatrist. In 1969 she wrote her ground-breaking book ‘On Death and Dying’ in which she proposed the five stages of grief. She wrote a total of 25 books on dying and related topics, received many honorary degrees and died in 2004.

12-16 What are William Worden’s four tasks of mourning?

William Worden is an American psychologist whose theory describes four tasks of mourning. These being:

1. To accept the reality of the loss: Although the bereaved person knows intellectually that their loved one has a life-limiting or life-threatening condition, that they are losing functioning or that they have died, they may still experience a sense of disbelief. Integrating the reality of the diagnosis, the losses along the way, or the death means ‘taking it in’ with their whole being.
2. To process the pain of grief: It is normal and appropriate to experience pain during bereavement. The pain can be physical, psychological, emotional, social and spiritual. It is important to acknowledge and work through this pain as avoidance will likely lead to problems at a future time.
3. To adjust to the world without the deceased: There are three adjustments to be made, namely external adjustments, internal adjustments and spiritual adjustments. In other words, how the death affects your everyday function, how it affects your sense of self and how it affects your beliefs, values and assumptions about the world.
4. To find an enduring connection with the deceased while starting a new life: The bereaved person creates a balance between remembering the person who died and finding a way to continue to live a meaningful life without them.

Worden’s four tasks of mourning are accepting the reality of the loss, processing the emotional pain of grief, adjusting to life without the loved one, and finding a way to remember them.

Note

Professor William Worden is an American psychologist who wrote the book ‘Grief Counselling and Grief Therapy: A Handbook for the Mental Health Practitioner’ in 1982.

12-17 Is the grief process always experienced as moving from one stage or task to the next in sequence?

No. These stages and tasks are common within the grieving process but are not always experienced as moving neatly from one stage or task to the next. To believe this puts an expectation on the time that a person should take to grieve and that they will then be ready to move on once they have worked through each stage or task.

The grief process does not always move in order from one stage or task to the next.

12-18 Is grief always experienced in the same way and in a specified timeframe?

No. Parents often describe the grief process after the loss of a child like being on a rollercoaster or in a whirlpool. A range of different emotions are experienced, from great anger, deep sadness and depression to feelings of relief, then back to feeling angry or sad again. Grief has also been described as ‘chaotic, messy and complicated’.

There is also no time limit on grief as individuals experience grief differently. Many parents will experience grief at the death of their child for a lifetime, but in time learn to accept the loss and find a sense of peace and healing. Telling a grieving person that ‘it is time to move on’ or to ‘get over it’ is unhelpful.

Grief is experienced differently by each individual and there is no time limit as to how long a person should grieve.

Supporting families in their grief and bereavement

12-19 How do we support families before the death of the child?

When a child becomes gravely ill, the natural order of the family changes and the lives of all the family members are changed forever. This is a time where the family and the sick child have little control over what happens to them and few choices.

Giving them choices and some control in an uncontrollable situation empowers them and assists them in making good decisions for themselves.

A family can be helped by doing the following:

• Involve them in any planning to prevent them becoming passive and fearful.
• Do everything you can to give the child and the family choices and some control.
• Talk through what might happen in detail (best- and worst-case scenarios).
• For each scenario, explain and agree on exactly what the plan is.

It is important to give families choices and involve them in planning to help empower them at a time when they have very little control.

12-20 How do parents experience the loss of a child?

The loss of a child is one of the worst experiences a parent can endure. It is not possible to anticipate how parents will be affected by the loss of their child and they will require special attention and support during this time.

12-21 How do we support families at the time of a child’s death?

The parents will always remember the moment of their child’s death including how they were supported at the time of death and immediately after. Even if the family are prepared for the death, they will be in shock when it happens, so we can begin by meeting their practical needs:

• Help to ease anxiety by explaining what they are going to see. Many people have not seen someone die or a dead body. Gently prepare them for what to expect.
• Acknowledge that their child has died and express sympathy simply and with sincerity. Don’t be afraid to show emotion or that you are also affected by the death.
• Allow them time with their child after the death to say their goodbyes or carry out any traditional or cultural rituals. If the child dies in a general ward, offer the family a private room, if available, as they may want time with each other and with their child who has just died.
• Offer opportunities for memory making such as footprints, hand prints or impressions, photographs and cutting off locks of hair. These can be a meaningful way for some families to say goodbye.
• Tell them you are there to answer any questions they have and explain what they can expect to happen next.
• Help them connect with those who will best support them. Offer your assistance in calling anyone they need. Determine how they will be getting home from the hospital.
• Call the funeral home when they are ready to leave or offer to call one if they have not chosen one at this time.
• Give a family member a contact number in case they feel the need to ask questions or get further information at a later stage. Many families are so overwhelmed that it isn’t until hours later or the next day that their questions begin to surface. Let them know how they can reach someone once they’ve left the hospital.
• Be careful not to judge or make assumptions. Some families may weep, some may laugh and joke, some may show no emotion at all. Some may lay in bed with the person, some may not even want to enter the room. Give them the time, space, and understanding they need to grieve in the way that works for them.

12-22 How can we support parents through their bereavement?

Parents who are grieving need to be able to:

• Tell their story
• Give themselves permission to grieve
• Get support from within their community and from the healthcare providers who supported them through their child’s illness and death.

Ways in which parents can be supported include:

• Accept that the family will have a broad range of grief reactions, therefore avoid becoming judgemental or withdrawing. These reactions may include anger, blame, humour or an inability to grieve.
• Informal types of bereavement support such as sympathy cards, letters, emails, phone calls and attendance at funerals and memorial services are deeply appreciated by parents when provided by healthcare providers who have cared for their child during their illness.
• Family memory and family rituals are important tools when helping parents grieve and prepare for loss. Often at the height of the child’s illness, good family memories are replaced with memories of hospitals, time apart for the rest of the family and memories of fear. Help parents recall their family memories such as bedtime stories, dinner time rituals or family jokes.
• Parents should be offered follow-up appointments with paediatricians, bereavement teams or family doctors as these appointments allow parents further opportunities to discuss their child’s death as well as providing emotional support.
• Provide information in multiple formats (e.g. written, audio-visual, public meeting, broader media programmes or internet based) about the bereavement process including gender differences, expected problems, needs of siblings and extended family and available services in and around their community.
• Support groups can play a vital role in supporting grieving families both before the child’s death and afterwards. Knowing that they are not alone and knowing what to expect assists parents in processing their grief.

12-23 How do we recognise complicated grief in parents?

Complicated grief in parents refers to bereavement accompanied by extreme symptoms of separation distress and trauma. To consider that someone is experiencing complicated grief these symptoms must have lasted at least six months and led to significant functional impairment.

They need to experience extreme levels of separation and traumatic distress symptoms which include:

• Unable to stop thinking about their dead child
• Longing for their dead child, to the detriment of other immediate family members
• Searching for or ‘seeing or hearing’ their dead child
• Excessive loneliness since the death in that they isolate themselves from any contact with the outside world
• Lack of purpose
• Difficulty believing or acknowledging the death
• Feelings of numbness
• Detachment or lack of emotional responsiveness
• Difficulty believing or acknowledging the death
• Feeling that life is empty or meaningless
• Feeling that part of oneself has died
• A shattered or broken view of the world
• Thoughts of harmful behaviours such as suicide
• Excessive irritability and bitterness.

Immediately refer the parent who displays symptoms of complicated grief to a qualified professional for further support and guidance.

12-24 How can siblings be supported through their grief and bereavement?

Siblings have unique relationships with one another and how they grieve will also be unique. Siblings need their own time to grieve and need to feel safe to express how they are feeling. It is important to remember that children grieve differently to adults. For example, fear stemming from misunderstandings (misconceptions) could lead the siblings to believe that they too may have or get this illness and may die, which would cause them great anxiety.

Children’s reaction to the death of a sibling may be influenced by their age, their development stage, their personality as well as the family, cultural and religious influences in their lives.

Parents must be encouraged to speak in an open, honest and age appropriate way with their children to help them cope better with their loss. Siblings should be offered opportunities to participate in planning of the memorial service and included in decision making when and where appropriate. Speak to them about their ideas of ways they would like to remember their sibling.

Involvement of schools for ongoing support is vital and if there are any indications that the sibling may be experiencing complicated grief, they need to be referred for professional bereavement support.

Siblings of the dying or dead child must be helped through their grief and bereavement.

Children and grief

12-25 How do children understand death?

An understanding of death includes the knowledge and acceptance that:

• Death is universal – it affects everyone.
• Death is inevitable – we are all mortal and will die one day.
• Death is irreversible – there is no possibility of continued physical existence after death.

Children are not able to fully understand these three concepts when they are very young but develop a greater understanding of death as they get older and mature.

Very young children do not understand that everyone will die one day and that there is no physical existence after death.

12-26 How do children experience grief?

Children, like adults, experience grief, whether it is linked to the loss of a loved one or linked to their own diagnosis and probable death and what that means to them.

Children grieve differently to adults. Children’s understanding of health, illness, death and dying go through stages according to their age. The stage of a child’s understanding will also depend on their own previous experiences with death and grief.

The majority of children who experience loss will have three concerns, namely:

• Did I cause the death?
• Will I die?
• Who will care for me?

Children need to be reassured that they were not responsible for the death.

Children grieve differently at different ages and do not grieve the same way as adults.

12-27 What grief behaviours do children show?

The sick child and the siblings may struggle with strong feelings of grief. Children experiencing grief can exhibit many different behaviours. These are normal expressions of grief and are not dysfunctional, unless they persist.

Grief behaviours in children include:

• Regression: The child may start to behave in a manner that is below their developmental stage. For example, a child that could previously dress themselves now needs help from an adult.
• Change in behaviour: The child’s normal behaviour changes. For example, a child that was previously reserved and quiet becomes very extroverted, loud and disruptive. Sometimes a loud child will become quiet and reserved.
• Underachieving or overachieving: The child who was previously excelling at school may start underachieving and a child who previously did not do well becomes focused on excelling.
• Suppression of emotions: The child may not express their feelings or emotions and it may seem that they do not miss their dead loved one.
• Premature sexual relationships: The child who has experienced a loss is more vulnerable to becoming involved in sexual relationships from a young age.

It is important to recognise that these behaviours are often exhibited due to a need for attention but also because of a fear of the unknown and a fear of death.

Behaviour changes are common in children who are grieving.

12-28 How can children be supported through grief?

Grieving children need to know that there is someone who is prepared to take the time to listen and be there for them. They need to feel safe in order to express how they are feeling. Be prepared to repeat conversations, as children take time to process information. Be patient, open, honest and consistent with your responses. Reassure them that grief is normal and that it’s okay to be upset about what has happened.

Ways that can promote healthy coping for children can include the following:

• Be available. Provide a safe space for talking about feelings without any distractions or interruptions.
• Talk about the person who has died and remember to use their name in conversations.
• Maintain routines and provide a sense of safety.
• Do not try to soften the reality of the situation by avoiding the topic or using other words for death such as ‘passed on’ or ‘late’ that the child might not understand. Avoidance can prevent the child from confronting their own grief and dealing with it.
• Provide opportunities for expression. Children respond well to creative outlets and the following can encourage them to process and express their grief:
  • Drawing and painting
  • Reading and storytelling
  • Writing poetry or letters to the person who has died
  • Craft activities, such as making a memory box or a collection of photos (collage)
  • Music and dance.
• Warn parents that young children’s play and interests may revolve around death and dying and this can be a natural way for children to process their distress and gain an understanding of what has happened.
• Encourage the continuation of friendships with peers and use of social networks that can provide support and advice.
• Be aware of signs of distress, for example, self-blame or talk of self-harm.

12-29 What are the characteristics of grief in infants?

Infants up to the age of two years may show the following characteristics:

• A sense that something is missing, even if they cannot express it in words.
• They miss all aspects of the person such as their touch, the feel of their body, sound of their voice, their facial expressions, their smell and the activities that they experienced together.
• They often suffer separation anxiety.
• They may regress, be irritable, clingy and withdrawn.

12-30 How can you help infants grieve?

The following may be helpful:

• Maintain as much of their normal routine as possible
• Create stability
• Hold them when they are sad or upset
• If they are withdrawn, try to gently engage with them using interactive games like ‘peek-a-boo’ or singing their favourite songs.

12-31 What are the characteristics of grief in young children aged 2 to 6 years?

Children between the ages of 2 and 6 years may show the following characteristics:

• They may not initially respond on hearing that someone has died. They do not understand that death is final and may believe that the dead person will return.
• They may only get upset at the moments when they feel the absence most acutely but not at other times.
• They may suffer separation anxiety.
• They may regress, be irritable, become clingy or become withdrawn.
• They may experience sleeping problems.
• Their body language may reflect their feelings. For example, they may curl up into a fetal position.

Young children do not understand that death is final and that the loved one will not be coming back.

12-32 How can you help young children of 2 to 6 years to grieve?

The following may be helpful:

• Create stability and a feeling of safety.
• Hold them when they are sad or upset.
• Try and engage with them if they are withdrawn.
• Allow and encourage active play and communication.
• Provide verbal feedback on what you are seeing to help them verbalise how they feel.
• They may have ‘magical thinking’. For example, ‘I was mean to Joseph so he died, he might come back if I am good.’
• Give honest and clear answers and offer simple explanations for illnesses and death. If possible, relate the death to something in the child’s experience such as the death of a pet or explain that when people die, they can’t be seen anymore but they can be remembered by looking at pictures.

12-33 What are the characteristics of grief in children of 7 to 12 years?

Children between the ages of 7 and 12 years may show the following characteristics:

• They may grasp the concept of death as final and irreversible but may still believe that it could not happen to them.
• They may be curious about what has happened to the person who died.
• They may have trouble with abstract concepts such as an afterlife.
• They may start to show aggressive tendencies, risky or impulsive behaviour.
• They may express fears about their own future.

12-34 How can you help older children of 7 to 12 years grieve?

The following may be helpful:

• Provide clear and honest information. Use simple explanations about causes of death and use drawings or pictures to assist in the explanations.
• Learn what the child thinks and already knows before making assumptions of what they might need to know.
• Ensure that there is a stable routine.
• Ensure that you always have a clear plan for getting back together when you part e.g. ‘I will be here at home waiting when you get back from school.’
• Be supportive if children become clingy.
• Respond lovingly if the child seeks affection.
• Encourage the child to share unpleasant and confusing feelings they have.
• Stimulate withdrawn children with interactive games such as drawing together or mutual story-telling.

12-35 What are the characteristics of grief in adolescents of 13 to 18 years?

Adolescents between the ages of 13 and 18 years, experience grief similar to adults and may show the following characteristics:

• The development of abstract thinking
• They may show philosophical thinking about the meaning of life and death
• Their grief may manifest as withdrawn, depressive behaviours
• They may contemplate their own beliefs in a life after death
• They often experience powerful emotions and may be surprised by the intensity of these emotions
• A key stage of teenage development is moving towards independence from caregivers, therefore they are more likely to turn to their peers and friendships as their main source of support and connection when they grieve.

12-36 How can you help adolescents grieve?

The following may be helpful:

• Be prepared and willing to engage in long and difficult conversations.
• Be prepared to say, ‘I don’t know’.
• Accept and explain the strong emotions they may experience.
• Provide stability without restricting or over-protecting them.
• Give them freedom to spend time with their peers.

Offer a secure and caring presence to anyone who is grieving.

12-37 How do we recognise anticipatory grief in children?

Anticipatory grief is exhibited in different ways. Children may:

• Project fears onto others, for example, that other loved ones might die too
• Become very anxious
• Display separation anxiety
• Worry about what will happen to their loved ones when they die
• Become withdrawn, quiet and increasingly irritable
• Express their ideas and fears through play or art.

12-38 How do we manage anticipatory grief in children?

Useful ways of managing anticipatory grief in children include:

• Encourage the child to communicate how they feel.
• Communicate with them about what might happen leading up to, during and after death. Give them options and choices where possible.
• Never retract a child’s choice unless you absolutely have to. The more control children feel they have, the less fearful they will be.
• Encourage children and families to be open and honest with each other.
• Give permission to the child to show their emotions, to not know what to say and to value just being together for comfort and support.

Death and disease may be taboo or too emotionally painful for some families to discuss. Some family members avoid conversations or clam up and say nothing. This leads to the child being isolated when they are most in need of support.

12-39 What are the risks for complicated grief in children?

Children may be at risk for complicated grief due to several features related to the loss:

• Features of the loss: was it sudden, violent or prolonged?
• Features of the child: have there been multiple losses or have there been previous emotional or behavioural problems?
• Features of the relationship: was the relationship difficult, unsupported or with attachment issues?

12-40 What are the signs and symptoms of complicated grief in children?

Important signs and symptoms of complicated grief are:

• An extended period of depression (longer than 2 months) in which the child loses interest in daily activities and events
• Inability to sleep
• Loss of appetite
• Prolonged fear of being alone
• Regression to more immature behaviour
• Withdrawal from friends
• Excessive imitation of the person who has died or avoids reminders of the deceased
• Sharp drop in school performance or refusal to attend school
• Anger leading to destructive behaviour where the child may pose a threat to themselves or others
• Signs of post-traumatic stress disorder such as flashbacks and nightmares
• Withdrawn and displays emotional numbness
• Repeated statements of wanting to join the deceased
• Suicidal thoughts.

12-41 What should you do when you recognise a child is experiencing complicated grief?

It is important to look out for prolonged signs of complicated grief and refer the child to a psychologist or suitably trained professional.

Be aware of signs of complicated grief and ensure the child receives help from a qualified professional.

Supporting children after death

12-42 Should children participate in grief rituals?

Yes. It is very important that children be allowed to participate in grief rituals. Participation assists in developing good coping skills as well as uncomplicated grief patterns.

Children should not be excluded from grief rituals as it helps them process their grief.

12-43 Should children be allowed to view the dead person’s body?

Viewing the dead body can be helpful but needs to be the child’s choice. They may change their minds several times, so keep the option open. It may help the bereaved child to say goodbye, to accept the reality and finality of death and to be less scared.

It is important that they are given clear and detailed information about what will happen. Where the body will be and what it might look like. Choices and control are important, for example, how and when they enter the room and who they would like to have with them at the time.

12-44 Should children attend funerals?

As with viewing the body, children should be allowed to attend the funeral when this is appropriate. It will be important to:

• Make sure the child understands that they are welcome at the funeral.
• Ensure that they attend with someone who will be able to support them.
• Provide clear and detailed information about what will happen at the funeral.
• Explain that the body of the person who has died is being buried or cremated.
• Explain that the deceased can no longer feel anything and is not scared.
• Explain that there might be a ‘party’ after the funeral and to not be surprised or upset by that.
• Prepare them for some of the weird or silly things adults may say to them.
• Create opportunities for them to be involved in the service.

Children should be allowed to attend a funeral if they wish to.

12-45 What other ways can we assist children to cope after the death of a loved one?

If children do not want to participate in the rituals such as viewing the body or attending the funeral it is important to give them the opportunity for an alternative goodbye.

Examples could include:

• A memorial at home with specially chosen songs, music, drawings and familiar objects that belonged to the deceased
• Visiting a place with special memories and talking about these memories
• Creating a special place of their own choosing where they can remember the deceased
• Memorial candles at family events symbolising absent friends and family
• Starting a memory box or other form of memory work.

Memory making

12-46 What is memory work?

A child who is dying wants to know that they will always be remembered and not forgotten by their family.

Memory work is a physical way to allow families to share and hold onto memories of the person who has died. Revisiting this memory work can help children integrate the loss into their growing and changing lives over time.

Memory work can provide an opportunity for the dying child to leave behind memories as well as create a way for families to remember the person who died.

12-47 What memory making activities can dying children be encouraged to do?

Before a child dies, they can be encouraged to create memories or create keepsakes as a way for the family to hold onto their memory. These activities can include the following:

• Writing a ‘children’s’ will: Many children who are dying feel that they will not leave a legacy because they are too young. By enabling them to write a will the child has the chance to decide who gets their special things. It also provides an opportunity to discuss their funeral and what they would like to happen at the funeral.
• Making a memory box or book. This contains photos, videos, written stories, important documents as well as special items such as a lock of hair or letters.
• Telling their story either by writing it down, drawing pictures or telling it to someone who can write it down. Journaling or keeping a diary are other ways of telling their story.
• Taking hand and footprints by either drawing around the hand or foot or by painting their hands or feet and imprinting these onto a piece of paper.

A memory box or memory book is a very useful way of keeping items or pictures that help one remember a person who died.

12-48 What memory making activities can assist the family share and hold onto memories of the person who died?

Activities that can assist the family include the following:

• Taking hand or footprints: Providing a family with an opportunity to get an ink print of their child’s hands or feet can create meaningful keepsakes.
• Cutting off a lock of a child’s hair to have as a keepsake.
• Encouraging the family to take photographs with a stillborn baby or a baby that is not expected to live for long.
• Making memory boxes or books.
• Drawing a family tree or making a family record can help a child see where they and the child who died fit into the family.
• Telling the story. Encourage children to write or tell their story so that they can remember clearly what happened. This may allow caregivers to identify and correct any misunderstanding or wrong ideas that a child may have about the event.
• Writing a song or a poem dedicated to the person who has died.

12-49 What impact can the death of a child have on you as healthcare provider?

The death of a child can have an emotional, physical, spiritual, behavioural and cognitive impact on the healthcare provider. There often may be feelings of failure when the child dies – feelings that they have failed because they could not save the child’s life or failed in their social role as adults to protect the child from harm and feel they have betrayed the parents who trusted them with the most valuable being in their life.

It is important that healthcare providers examine and understand their personal feelings about death and dying to be effective in providing ongoing support to the family, as well as prevent burnout and a probable risk of developing compassion fatigue.

12-50 How can you deal with your own grief as a healthcare provider?

The following suggestions may assist in dealing with your own grief:

• Organisational strategies include:

  • Finding outlets for sharing emotional expressions such as debriefing sessions, retreats, professional counselling and pastoral care
  • Allowing time and opportunities for grieving such as dedicated meditation areas, memory boards or books and remembrance ceremonies
  • Educating yourself on grief theories, compassion fatigue, end-of-life care and communication.

• Personal strategies include:

  • Recognising feelings of grief and loss and allowing yourself time to grieve
  • Using available resources and mechanisms for coping with grief through sharing feelings and venting emotions with coworkers, friends and family members
  • Finding activities that bring comfort and refreshment such as painting or listening to music
  • Identifying ways to renew personal strength and wellbeing, for example, spirituality, yoga or relaxation
  • Maintaining physical health by eating healthily and exercising
  • Maintaining an appropriate work-life balance
  • Building positive relationships in both your personal and professional life
  • Seeking professional help when needed.

As a healthcare provider it is important to use both organisational and personal strategies to cope with your own grief.

Note

Refer to chapter 4 for more information on self-care, compassion fatigue and burnout.

Case study 1

Leroy and Shirley’s daughter, Bianca, died of leukaemia two months ago at the age of 6. Shirley is still very upset, crying most of the day and does not sleep well at night. Hannah, who is 13-months-old, has become increasingly irritable and clingy, and John, who is 4-years-old, keeps asking if Bianca will be back to play with him. During the grief counselling session, Shirley says that she still cannot believe that this has happened, and that she just wants to wake up from this nightmare. She admits that she thinks Hannah is being naughty and she does not know how to handle her clinginess. She also says she doesn’t know how to answer John’s question so keeps telling him that Bianca has gone away and won’t be coming back.

1. What types of losses have Leroy and Shirley experienced?

They have experienced the primary loss (death) of their daughter and with this loss they will have experienced many secondary losses. For example, the loss of a future with her, the loss of the dreams and hopes they may have had for her, the loss of seeing her go to school and the loss of her being the eldest child.

2. Who is likely to grieve in this family?

Leroy, Shirley, John, Hannah, the grandparents and the extended family and friends are all likely to grieve.

3. Who else may be grieving?

The other people who may grieve, although not family, might be those who had built a relationship with Bianca and the family, i.e. the healthcare providers who cared for her, her school teacher and classmates.

4. Will Shirley and Leroy’s grief be experienced in the same way and will they be able to move on quickly?

No. Shirley and Leroy will grieve differently, as no two people experience grief in the same way. However, as parents losing a child their grief process may feel like a whirlpool of emotions that come and go. Their grief process may be influenced by several factors such as the role they each played in Bianca’s life. Leroy and Shirley will not ‘move on’ quickly. Parents who experience the loss of a child may grieve for a lifetime but in time they should learn to accept the loss and find peace and healing.

5. Why is Hannah behaving as she is and what advice can you give Shirley to help her through this stage of her grief?

The clinginess and irritability that Hannah is displaying are normal characteristics that infants display while grieving. Reassure Shirley that Hannah’s clinginess and irritability are signs that she is grieving.

The advice you can give her may include:

• For her and Leroy to maintain as much of Hannah’s normal routine as possible to create a sense of stability and normalcy
• To hold and comfort her when she is irritable, sad, upset and clingy
• To use comforting words and engage in interactive play with her like singing her favourite songs
• To continue to talk about Bianca, using her name and tell her that they all are sad and that they miss her too. (Remember infants don’t understand that death is permanent.)

6. What could Shirley be encouraged to do and say when John asks when Bianca is coming back.

Children John’s age do not always understand that death is final and that the dead person will not return. By telling John that Bianca has gone away she may be reaffirming the idea in his mind that Bianca may return. Shirley needs to be honest and use simple language and words when talking to John, avoiding words like ‘gone away’ but rather using the words ‘died’ and ‘dead’. She can relate the death to an aspect of his experience such as the death of a pet or explain that when people die, that they can’t be seen anymore but that they can be remembered by looking at pictures.

7. Do you think Shirley is experiencing complicated grief?

No, she is not experiencing complicated grief. Normal grief can be expressed in a number of ways. Her being sad, crying all day and not sleeping well are the normal reactions a person who is grieving would display in the first few months after the death of their child.

8. What memory making activities could Shirley and Leroy be encouraged to do with John and Hannah?

The following are ways that the family could create memories and help John and Hannah integrate the loss of Bianca into their lives:

• Talking and sharing stories and memories about Bianca, using her name and looking at pictures of her and them together as a family
• Making a memory book or box of special items like her favourite books and toys, photographs and pictures she had drawn
• Drawing a simple family tree or making a family record to help John see where she and him fit into the family order
• Writing a special poem or song about her that they can all sing together.

Case study 2

Sean and Rebecca are expecting their third baby. The two older siblings, both girls aged 4 and 6 years of age, are very excited for the birth of their little brother. The pregnancy has gone smoothly and there have been no concerns. Soon after delivery it is discovered that their infant, George, has Trisomy 18 (a serious chromosomal condition that results in many physical abnormalities). The family have been prepared that it is unlikely that George will live for very long.

1. What kind of grief would Sean and Rebecca start experiencing at the time of diagnosis?

At this point and as long as George is alive, Sean and Rebecca will experience anticipatory grief.

2. How could you support the family at the time of George’s death?

Remembering that the family will always remember what happened at the time of their child’s death, the family should be treated with great compassion and given as much support as possible:

• Acknowledge their loss with sincerity and reassure them that you are there to support them and to answer any questions they have. Prepare them for what might happen over the next period of time.
• Provide a private space for the family and allow them to have as much time as they need to spend with their baby.
• Encourage them to create memories. This could include taking a lock of hair from the baby, making hand or footprints and taking photographs with the baby.
• At the right time, offer practical support, such as asking who you could contact on their behalf, calling the funeral home and ensuring that they are able to get home safely from the hospital.
• Refer them to someone who will be able to give them more medical information about Trisomy 18 and the risk of any other children being affected by the same condition.

3. Should the siblings be allowed to view George’s body when he dies?

Yes, the siblings should be allowed to see the baby once he has died but this should not be forced on them. They should be given the choice and their decisions respected.

4. Should the siblings be allowed to be part of the grief rituals?

Yes, it is very beneficial for children to take part in grief rituals. Their participation will assist them in coming to terms with the loss of baby George.

5. What other rituals can the siblings participate in if they do not attend the funeral?

The siblings could participate in a smaller memorial service within the home where they get to choose the songs they wish to sing and can be encouraged to draw pictures and speak about their memories and feelings for their dead brother. They could be taken to visit any places which will have significance to them and their memories of their brother.

6. What grief behaviours may the siblings show after the death of George?

Due to their young age, grief behaviours of the two girls may include:

• Showing little response as they do not properly understand death
• Being upset at times and then seem to forget about the loss
• Separation anxiety
• Regression
• Being irritable, clingy or withdrawn
• Problems with sleeping.