In this section
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.
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
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.
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:
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;
Health professionals can provide support to bereaved parents
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.
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.
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
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.
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.
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):
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.
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:
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
Reactions to loss in this age group are variable but
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
Possible reactions include:
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
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.
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:
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
It may be helpful for the child to contribute to the funeral
service by choosing music or creating artwork.
Recognising complicated grief
These may be divided into three groups:-
Features of the loss
Features of the child
Features of the relationship
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.
The Victorian Paediatric Palliative Care Program is able to
provide advice regarding counselling services and support groups
available to siblings. (see
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.
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:
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
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.
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
Phone: (03) 9650 3000
Website: National Association
For Loss & Grief Victoria (NALAG VIC)
Australian Centre for Grief and BereavementThis 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
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
Phone: (03) 9804 6222
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
Website: SIDS and Kids
Online (Australia)SIDS and Kids,
Hope Bereavement Care, Geelong 5226 7269
SIDS and Kids, Grampians 5320 4169
SANDS - Stillbirth and Neonatal Death
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
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:
6/ Worden JW. Grief Counselling and Grief Therapy. Springer. New
7/ Klass D, Silverman PR, Nickman SL. Continuing Bonds: New
Understandings of Grief. Taylor and Francis. Bristol UK.
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;
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
12/ McKissock D. The Grief of our Children. ABC Books. Sydney.
13/ Kroen WC. Helping Children Cope with the Loss of a Loved One.
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.