Bereavement

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    Bereavement

    The death of a child is a devastating loss particularly in times where most childhood illness can be prevented or cured. It profoundly affects all those involved&.parents, siblings, grandparents, extended family, friends and others involved in caring for the child. As a community we rarely experience the death of a child which makes it all the more difficult when we do. There is a sense that the natural order of things has been upset.

    Parental grief

    Grief is 'the cluster of thoughts, emotions, behaviours and experiences that are related to a loss.'®1
    It is a normal human experience although the grief experienced by bereaved parents is more likely to be severe, prolonged and complicated than the grief experienced by other groups. ®2,3 From the time of their child's diagnosis, parents experience a range of losses: loss of the well child, loss of a lifestyle, loss of hopes for the child and so on. Parents talk of losing their future when their child dies. They may also begin to grieve in anticipation of the death of the child. This is important because recognition of 'anticipatory grief' and appropriate support is required during the illness as well as in bereavement.

    The death of a child is not something parents 'get over'. Instead, the loss is integrated into the ongoing fabric of their lives. The impact of a child's death on a parent is influenced by their personal history including their relationship with the child, their previous grief experiences, the social supports available, any pre-existing psychopathology, personality factors and coping skills.

    When a child dies, parents can feel overwhelmed by feelings of anger, sadness, guilt, hopelessness, frustration and fear for their remaining children. The range of so-called normal or uncomplicated grief reactions is broad. Some families experience and openly express intense anguish. For others, adaptation requires avoidance and suppression of emotion and this can be hard for others to understand. It is important not to be quick to judge expressions of grief as abnormal. Each person grieves in their own way and in their own time. Some people grieve openly, others privately and alone. As long as it harms neither the parents themselves nor others, there is no right or wrong way to grieve.

    Progress through phases of grief is not straightforward or unidirectional. The intensity of grief can vary over time and many families report an increase in the third year following bereavement. ®3 Even when parents have resumed many of their normal daily activities, a chance reminder of the child who died may plunge them back into sadness again. Sometimes the emotion precedes the awareness of the reminder. A tune the child sang, or a favourite toy in another's hands may cause renewed pangs of grief. The parent may be unconscious of the actual trigger at first and may find the sudden emotion startling. Parents may also be reminded of what they have lost as they watch others move through life's milestones (eg. starting kindergarten and school, birthdays, weddings). They describe grieving anew at these times.

    Many parents feel they never really recover from the loss of a child. They may adjust to it, they may be able to resume their everyday activities, and may even derive some pleasure from life but they feel they remain vulnerable. They are not the same people they were before. For some parents, the new identity is a stronger one they feel nothing can affect them so profoundly again. Researchers in this area have recently turned their attention to the positive aspects of grief including the development of greater empathy and compassion. ®4

    Fathers and mothers experience grief differently. In general, mothers tend to want to talk about their feelings more often than fathers do. Preferred sources of support may also differ. There is conflicting information about the effect of grief on marital relationships. Some couples find their bond strengthened. Others move in different directions and eventually separate.

    One of the most difficult aspects for parents is the impact the child's death has on friendships. Many find that friends are unsure of what to say or how best to support them&friendships often break down at a time they are needed most.

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    Supporting bereaved parents

    Most bereaved parents will turn to family, friends and their local communities for support and will not necessarily need the input of health professionals. Where parents seek added support however, this may be provided in a number of ways:

    • Emotional support in the form of consolation and caring
    • Informational support in the form of advice and guidance
    • Practical support (eg. assistance with funeral arrangements)
      ®5

    Support may be provided formally or informally through counselling, support groups, or the provision of literature. Professionals who have known the family and the child who has died, can assist them to;

    • accept the reality of the loss
    • work through the pain of grief
    • adjust to the environment in which the deceased is missing ®6
    • renegotiate the relationship with the child such that it continues albeit in a different way. 'Letting go' of the relationship with the deceased is not a requirement. Bereaved individuals are now understood to maintain bonds with the dead person by remembering them, talking about them and sometimes talking to them.®7

    Health professionals can provide support to bereaved parents by

    • maintaining a presence if that is the family's wish
    • providing comfort
    • acknowledging what has happened
    • acknowledging the emotions they are experiencing
    • normalising these emotions
    • listening to parent's stories sympathetically and non-judgementally

    It is important to state that families will differ in their preferred means of support. Some will just want to be left alone. Others might want to share their feelings quite openly. In some cases no one individual or health discipline can meet all the family's needs in terms of providing bereavement support.

    Health professionals need to recognise the significance they may have in a family's life. Many children are treated over long periods of time and the hospital may become something of a second home. Health professionals also care for families during the intense highs and lows of serious illness and may even be present at the time the child dies. The significance of this cannot be overstated. These relationships cannot be abruptly ended and many (but not all) families will want ongoing contact with people they feel truly understand what they have experienced. ®8 A follow-up appointment with the child's paediatrician should always be offered to discuss the child's illness and treatment, the results of any outstanding investigations including post-mortem examinations and how the family is coping. This is an opportunity to address ongoing concerns, normalise feelings associated with grief, provide advice on how to support siblings and offer information on potential sources of support for the family should they require it. Parents almost universally find these meetings helpful although it may be difficult for them to return to the hospital. ®9 They may therefore need a number of opportunities to respond to invitations to attend. Clinicians who write to families and then follow up with a telephone call appear to have greater success in achieving a meeting with families. Some paediatricians may feel they are intruding on a family by telephoning but most parents will appreciate this gesture of ongoing support. A social worker may be very helpful in facilitating this process.

    The ideal timing of such a follow-up visit is unknown. However, many bereaved parents state that it is after the time of the funeral (6 weeks to 3 months after the death) when the loss is felt more severely. Many of the practical tasks required up to that point will have been completed and family and friends have returned to their own lives, leaving the bereaved parent to feel abandoned. By this time, family and friends often give implicit and explicit messages to the parent to 'snap out of it'.

    The issue of whether or not to acknowledge the anniversary of the child's death may cause staff concern. In general, families appreciate some sort of contact at this time. As described above, doctors, nurses and social workers have cared for the family at a time of great significance and families will generally appreciate knowing they are in the thoughts of those staff members.

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    Bereavement risk assessment

    An assessment of adjustment can be made by discussing the parent's ability to fulfill role responsibilities at work and at home, the quality of their interpersonal relationships and their level of psychological distress (see table below). Identifying difficulties and linking parents to appropriate resources may be critical in helping parents obtain the support they need.

    Bereavement Risk Assessment
    The assessment of bereavement risk presupposes that some individuals will display a grief reaction that does not fit a 'normal' or expected pattern or level of intensity. Factors that influence complicated bereavement are:
    • stage of the life cycle particularly when:
      the bereaved parent is an adolescent and family support is perceived as inadequate.
      the surviving parent of a deceased child is a single mother/father as a result of divorce or being widowed.
    • a history of previous losses, particularly if unresolved. Losses may include:
      loss of a pregnancy
      loss of a job
      divorce
    • the presence of concurrent or additional stressors such as:
      family tension
      compromised financial status
      dissatisfaction with caregiving
      reliance on alcohol and psychotropic medications, pre-bereavement
    • physical and mental illness particularly:
      current/past history of mental health problems that have required psychiatric/psychological support
      family history of psychiatric disorders
    • high pre-death distress
    • inability or restriction in use of coping strategies such as:
      maintenance of physical self-care
      identification of prominent themes of grief
      attributing meaning to the loss
      differentiation between letting go of grief and forgetting the bereaved
      accessing available support
    • isolated, alienated individuals
    • low levels of internal control beliefs, such as:
      feeling as if he/she has no control over life
    • the availability of social support particularly if:
      people in the immediate environment are, or are perceived to be, unsupportive
      support from family and friends immediately prior to death was good and following death it subsided
    • the bereaved lack a confidant with whom to share feelings, concerns, doubts, dreams and nightmares
    • the bereaved is dissatisfied with the help available during their child's illness
      ®10

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    This is not an exhaustive list and attempts only to identify some of the risk factors that predispose bereaved parents to psychological distress and in turn complicated bereavement outcomes. Further support may need to be accessed if some of these risk factors have been identified. Thus, it is important for health professionals to know what local bereavement services are available (see Resources).

    Grief is a normal response to loss. It is not an illness. Medication will not resolve or cure it. Medications have a very limited role in the management of uncomplicated grief. Antidepressants are inappropriate unless clinical depression is truly present. Passionate sadness and depression are very different responses and, although bereaved people frequently describe themselves as 'depressed', they are unlikely to be suffering from a chemically treatable condition. ®11 Support and counselling are usually more appropriate. (for more information Contact Us). There is a group however, in which grief is complicated by the development of clinical depression. Persistent, marked disturbances of sleep, appetite, and social function may indicate depression. Parents in this group should be urged to see their general practitioner. A more urgent referral to a psychiatrist should be made in circumstances where the individual is expressing suicidal ideation or intent.

    There is no short cut to the resolution of grief. Most health care professionals experience feelings of helplessness in the face of such intense emotional pain and need to be reminded that it is of therapeutic value to provide a safe place for bereaved people to express thoughts and feelings without fear of judgement.

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    Sibling grief

    Siblings almost universally experience distress but many feel unable to share this for fear of burdening their already fragile parents. One of the many factors which influence sibling grief is developmental level and the impact this has on the child's understanding of illness and death.

    Development and concepts of death

    Most children learn to recognise when something is dead before they reach 3 years of age. However, at this early age, death, separation and sleep are almost synonymous in the child's mind. As children develop and experience life, their concept of death becomes more mature. Six sub-concepts are acquired during this process (average age of attainment in brackets):

    Separation (age 5) dead people do not co-exist with the living
    Causality (age 6) death is caused by something, be it trauma, disease, or old age
    Irreversibilit(age 6) a dead person can not 'come alive' again
    Cessation of bodily functions (age 6)  
    Universalit(age 7) all living things will die
    Insensitivity(age 8) the dead can not feel fear or pain


    There are important consequences of an incomplete understanding of death. Children younger than five years old may not appreciate that the deceased will not return. This belief will have been affirmed by stories such as Snow White, Sleeping Beauty and exposure to irrepressible characters like the Wile E Coyote. A young child may also believe that they have brought about the death of another through their wishes or behaviour. This reflects their tendency to think 'magically' and their inability to understand causality in death. Slightly older children who understand irreversibility and causality may not grasp the idea that bodily functions cease after a person dies. They may then worry that the buried person will be hungry or cold. Perhaps more significantly, children who understand that a dead person does not need to eat or breathe, may not necessarily appreciate that the person can not feel pain or fear. They may have fantasies of the person trapped in a casket in the ground and feeling afraid. Children who do not understand universality may view death as punishment for wrong doing.

    Every child is different and his/her understanding of death will depend as much on past life experiences and cognitive ability as on age. Children who have experienced the death of a grandparent, a fellow patient or even a pet will have a more mature concept of death than others of the same age or developmental level. It is also important to note that children often regress developmentally at times of illness or stress. For this reason, it is essential that assumptions are not made on the basis of age. Each child should be assessed individually as to their level of understanding before explanations are given.

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    Implications for preschoolers

    Children in this age group may ask many questions in their quest to understand what is happening. They may also ask the same question many times over. They have an almost matter-of-fact curiosity about death which adults may find confronting or even worrying. They do not yet understand that death is:

    • Irreversible 'When is my sister coming back?'
    • Caused by illness, trauma and age children may have thought bad thoughts or said hurtful things to the deceased prior to death eg. In a fight with a sibling, 'I hate you, I hope you die'.
    • Associated with loss of function 'What will my sister eat/breathe?'

    Explanations need to address concerns that arise as a consequence of an incomplete concept of death. eg;
    'Your sister, Amy, died because she was very, very sick. We won't be able to see her any more. Nothing you did or said caused Amy to die. Amy doesn't need to eat or breathe and she cannot feel sore or scared. Mummy and Daddy are very sad that Amy has died but they are not sick and will be here to take care of you'.

    Preschool children may not sustain sadness for long periods. They may also appear indifferent. Young children often incorporate themes of death and dying into play. Parents need to understand that play is the child's way of making sense of their world, so it is normal for recent life experiences to be played out with toys or friends.

    Reactions to loss in this age group are variable but might include:

    • Apparent lack of reaction
    • Periods of distress alternating with normal play
    • Developmental regression (eg. bed wetting, clinging)
    • Sleeping problems
    • Separation anxiety
    • Withdrawal
    • Death/funeral/illness themes in play

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    Implications for school age children

    School age children gradually acquire and refine the capacity for logical thought. During these years, they develop a more complete understanding of death. At first, they see it as something that happens only to other people. From the age of six, children start to develop the death concepts of irreversibility, causality, and universality. There is considerable variability in the ages at which these concepts are acquired so it is important when speaking with children to make some individual assessment of their level of understanding. School aged children become increasingly curious about the causes of death and are interested in details and death rituals. Explanations should be tailored to the child's developmental level, cognitive ability and previous life experience.

    Possible reactions include:

    • Denial
    • Anger and aggressive oppositional behaviour
    • Guilt
    • Sadness/withdrawal
    • Disturbed sleep/appetite
    • School failure
    • Expressing a wish to die so as to be reunited with the deceased

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    Implications for adolescents

    By the beginning of adolescence, most children are aware of the reality of death. It is during this time that adolescents begin to ask theoretical and philosophical questions about life and death. Their mourning responses are similar to those of adults but they may find it easier to talk to adults outside the family than to parents. The peer group remains very important but adolescents may feel some ambivalence about confiding in peers for fear of seeming different. Many young people have not had a personal experience of death.

    Young people who experience grief do so in the setting of important life and developmental changes. Grief presents yet another crisis at a time of heightened vulnerability.

    Possible reactions include:

    • Excessive concern for others, guilt, anxiety and insecurity
    • Sleeplessness or wanting to sleep all the time
    • Withdrawal from family, spending increased time alone listening to music or watching TV
    • Wanting to be around the family more than before
    • Preoccupation with the death, wanting to talk about it all the time or angrily refusing to talk about it
    • Changed values and philosophy of life
    • Poor concentration, memory, organisation, planning skills and reduced school performance
    • Restlessness, always needing to be doing something or be with peers
    • Angry, controlling, assertive and demanding
    • More detached from life, the future or interests
    • Rebelling against all authority
    • Risk taking behaviours

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    Supporting bereaved children

    Adjusting to the loss of a loved person does not necessarily require 'letting go' of the relationship. Indeed, bereaved children (and adults) often maintain a connection to the dead person. The relationship is reconstructed over time and maintained by remembering the deceased person, keeping the belongings of the deceased and sometimes talking to the deceased.

    Children spend most of their time in the care of their parents. It is therefore important to empower parents to support siblings by equipping them with knowledge and ideas. It may also be helpful to offer parents a chance to practice responses to questions before they actually talk with the child. (Dr Gerri Frager, Medical Director of the Paediatric Palliative Care Service, IWK Grace Health Centre, Halifax, Nova Scotia, Canada: Proceedings of the 5th Biennial Conference of the Australian and New Zealand Society of Palliative Medicine. Townsville, Australia. 2002). Staff can encourage the family to:

    • Provide information in simple, developmentally appropriate language
    • Be alert to misunderstandings which may arise as a consequence of an incomplete death concept
    • Set aside special time for the child/young person
    • Openly express emotion
    • Recruit family, friends and teachers to help
    • Allow the child to play with friends and reassure them that it is OK to have fun
    • Help the child create memories eg. Stories, photos, drawings, memory books
    • Maintain normal routines and discipline as much as possible
    • Allow the child/young person opportunities to feel in control
    • Resist any temptation to 'fix their grief'
    • Encourage them to do what feels right for them
    • Be there to provide love, reassurance and routine
    • Allow the child time alone. Private 'space' is important
    • Talk about the death
    • Answer questions, no matter how explicit
    • Not be surprised if children use symbolic play, stories and art to make sense of their experience

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    Funerals

    Children generally benefit from inclusion in family grieving although they should not be forced to participate in activities if they do not wish to. Their participation in the funeral should be encouraged. It may be helpful to assign a family friend or relative to support the child if the parents are unable to do so. They should also be adequately prepared for what they might see, hear and feel.

    It may be helpful for the child to contribute to the funeral service by choosing music or creating artwork.

    Recognising complicated grief

    Risk Factors for Complicated Grief in Bereaved Children

    These may be divided into three groups:-

    Features of the loss

    • Traumatic
    • Unexpected

    Features of the child

    • History of psychiatric disorder
    • Multiple losses
    • Child less than 5 years old
    • Adolescent

    Features of the relationship

    • Ambivalent/conflicted
    • Unsupportive family
    • Death of a father (adolescent boys)
    • Death of a mother (very young children)
    • Mental illness in surviving parent

    ®12
    Children vary considerably in the way they react to loss. Most will not require counselling but the following features indicate a need for professional assessment.

    • Persistent aggression, oppositional behaviour or conduct disorder
    • Persistent failure to acknowledge the death
    • Obvious and persistent deterioration in school performance
    • Feelings of worthlessness
    • Anhedonia-withdrawal from and lack of interest in friends and activities they previously enjoyed
    • Frequent nightmares or disturbed sleep
    • Troublesome and persistent physical symptoms
    • Loss of weight
    • Prolonged negative thinking about the future
    • Suicidal ideation/behaviour
      ® 13,14

    The Victorian Paediatric Palliative Care Program is able to provide advice regarding counselling services and support groups available to siblings. (see Contact us)

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    A grandparent's grief

    The grief grandparents experience is unique. Grandparents experience a 'double grief' when a child dies. Not only does the death mean they lose a grandchild, they also witness the pain and suffering of their own child. ®15. This can be difficult to accept because as a parent they expect and want to be able to take away their own child's pain. They generally experience feelings of helplessness and hopelessness when this cannot be achieved.

    When a child dies, grandparents may feel a range of emotions but like other members of their family, they hurt and suffer. With so much attention on the grieving parents however, they may find themselves forgotten. It is helpful to acknowledge the intensity and the range of reactions they experience. They too need understanding and information. Grandparents often share a special bond with their grandchild. They may experience the loss of their dreams and hopes for their grandchild's future.

    Grief involves a range of emotions such as sadness, regret or anger. Grandparents may feel regret that they did not spend a lot of time with their grandchild. They may feel guilt that their grandchild died before them. Grandparents may also be concurrently experiencing changes relating to their stage of life such as retirement, ill health, and death of friends and family. These may compound the grief experience when a grandchild dies.

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    A school's grief

    The following is adapted from 'A Practical Guide to Paediatric Oncology Palliative Care', Royal Children's Hospital, Brisbane.

    After the family, the school community may contain the people most affected by the death of a child friends, fellow students, teachers, administrative staff. Parents form part of a wider school community. It may well be the first bereavement experience for the child's peers, their parents and teachers. Close attachments are formed between children and their teachers, so that the death of a child may be a personal as well as a professional loss.

    In a school, there will be a range of grief responses. It is anticipated that both staff and students will be vulnerable to stress and may express themselves differently. For the student, the closer they were to the child the more profound will be the consequences. Teachers may notice a change in the other student's behaviour, thought processes, concentration and academic performance. A greater level of support, monitoring and care may be warranted even for those students who may not be expressing their grief in an obvious way.

    People who may be at increased risk are:

    • those who have already experienced significant loss in their lives
    • those who have a close relationship with the child who has died or the siblings
    • those who have similar health problems themselves or in their family

    The school is located in an ideal position to provide opportunities for students to be supported as well as difficulties identified and addressed.

    A number of interventions can be made to ensure the well being of students and staff. The child's parents should always be consulted before any information is released so that their privacy and the best interests of any siblings are considered and respected.

    • Informing staff and students of the child's death is a priority. Anxiety and misinformation are fuelled by uncertainty and delay.
    • Senior staff need to acknowledge the sadness of what has happened, perhaps by way of assemblies, class announcements and letters home.
    • Staff and children need the opportunity to talk about what has happened, to ask questions, and to express their feelings. This is best done in familiar small groups, though it may also be appropriate to set aside a time where people can come and talk together. Students can also be given opportunities to write farewell letters or tributes, and to create artwork as an expression of thoughts and feelings.
    • A sense of routine provides reassurance to staff and students who have experienced trauma. It is therefore important that the school continues to function as a supportive and stable part of the staff and student's environment.
    • Staff will need their own support. Staff meetings provide an opportunity to provide information, monitor the reactions of the children and discuss feelings. In some cases, it may be helpful to hold a special meeting facilitated by someone with expertise in this area. Senior staff are usually required to manage the immediate crisis and may experience a 'delayed reaction'.
    • There are a number of ways in which the school can maintain contact with the family. This may be through friends or formal rituals. Some families welcome the participation of the school in the funeral for example, and may wish to be involved in school memorial services. The child may also have expressed wishes regarding the involvement of their school friends.
    • The school may find it helpful to participate in the Seasons Loss and Grief program (see Resources).

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    Acknowledgement

    The authors would like to acknowledge the kind assistance of Jane Sullivan, Senior Social Worker at the Royal Children's Hospital, Melbourne in reviewing the manuscript.

    Resources

    The Victorian Paediatric Palliative Care Program is able to provide advice regarding the services available in the child's community.
    Phone: (03) 9345 5374
    (03) 9345 4814

    NALAG (National Association for Loss and Grief) provides information and referral to grief services, self-help and support groups and maintains a database of available counsellors
    Phone: (03) 9650 3000
    Website: National Association For Loss & Grief Victoria (NALAG VIC)

    Australian Centre for Grief and Bereavement
    This centre provides a referral service and counselling service for those eight years and older, support groups and information about grief and bereavement. The centre runs a program called Kids Grieve 2.
    Phone: (03) 9265 2100
    Website: www.grief.org.au

    Very Special Kids (VSK)
    Counselling, support and referral services are provided to families, including siblings, of children who have died following illness. This includes support groups for children and adolescents.
    Phone: (03) 9804 6222
    Website: www.vsk.org.au

    SIDS and Kids
    A service for all those affected by the sudden and unexpected death of a child six years and under.
    Phone: (03) 9822 9611
    Email: melbourne@sidsandkids.org
    Website: SIDS and Kids Online (Australia)
    SIDS and Kids, Victoria)

    Hope Bereavement Care, Geelong 5226 7269

    SIDS and Kids, Grampians 5320 4169

    SANDS - Stillbirth and Neonatal Death Support

    Phone: 98990218

    Compassionate Friends

    Parent support groups and family resources

    Phone: 9888 4944

    Freecall: 1800 641 091

    Mercy Western Outreach Grief

    Counselling and group programs

    Phone: 9364 9838

    Seasons Loss and Grief Program
    This peer support program is directed at children and teenagers aged 5 18. Many schools have staff trained in the Seasons program and this can then be run at the child's school.
    Phone: (03) 9662 2033

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    References

    1/ Royal Children's Hospital, Brisbane. A Practical Guide to Paediatric Oncology Palliative Care. Brisbane 1999.
    2/ Middleton W, Raphael B, Burnett P, Martinek N. A longitudinal study comparing bereavement phenomena in recently bereaved spouses, adult children and parents. Australian and New Zealand J Psychiatr 1998; 32: 235-241.
    3/ Rando T. An investigation of grief and adaptation in parents whose children have died from cancer. Journal of Paediatric Psychology 1983; 8: 3-12.
    4/ Kellehear A. Grief and loss: past, present and future. Med J Aust 2001; 177: 176-77
    5/ Laakso H, Paunonen-Ilmonen M. Mother's experience of social support following the death of a child. J Clin Nurs 2002; 11: 176-185
    6/ Worden JW. Grief Counselling and Grief Therapy. Springer. New York.1991.
    7/ Klass D, Silverman PR, Nickman SL. Continuing Bonds: New Understandings of Grief. Taylor and Francis. Bristol UK. 1996.
    8/ Ashby MA, Kosky RJ, Laver HT, et al. An enquiry into death and dying at the Adelaide Children's Hospital: a useful model? Med J Aust 1991; 154: 165-170.
    9/ Jankovich M, Masera G, Uderzo C, et al. Meetings with parents after the death of their child from leukemia. Paed Haem Onc 1989; 6: 155-160.
    10/ Aranda S, Milne D. Guidelines for the assessment of complicated bereavement risk in family members of people receiving palliative care. Centre for Palliative Care Victoria. 2000.
    11/ McKissock M, McKissock D. Coping with Grief. ABC Books. Sydney 1995
    12/ McKissock D. The Grief of our Children. ABC Books. Sydney. 1998.
    13/ Kroen WC. Helping Children Cope with the Loss of a Loved One. Minneapolis.1996.
    14/ Herbert M. Supporting Bereaved children and Their Parents. Australian Council for Educational Research. Melbourne. 1997.
    15/ Bateman, V. Always Your Child. SIDS Australia. ACT. 2000.

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