The Childhood Cancer Foundation - Candlelighters Canada
This bereavement model was conceived by Christine Wandzura, a bereaved Parent, Kelly
Stacey, a paediatric oncology nurse, and Jill Downey, a hospice counsellor who works
primarily with children, teens and their families. It was designed by building a model so
that it illustrated how the major players interacted with and impacted one another.
The model was further crafted from Christine’s own experience of losing a son to a
malignant brain tumour in 1991. Since it was to be a North American model, the
author has included those elements which would most likely be encountered by any North
American family and indeed as you may conclude, it could be the experience of any family
world wide going through the loss of a child. The author has attempted to illustrate those
circumstances, which may be exclusively North American, or those elements, which are
primarily seen in these cultures.
North America: Canada, the United States and Mexico are a melting
pot of many people, cultures and traditions. When describing a North American
experience one is really describing many countries, rolled into one which makes up the
unique fabric of the people living in North America.
A little boy had gone to the store, but was late in returning home.
His mother asked, "Where were you?"
He said, "I found a little boy whose bicycle was broken, and I stopped to help
him."
"But what do you know about fixing bicycles?" his mother asked.
"Nothing," the little boy replied, "I sat down and cried with him."
Rabbi Harold Kushner (1985)
1. The deceased child
The dead child - the reason for the grief and hence the state of bereavement. A child in
the family dies, as the result of cancer and no person in the family is ever the
same. The child is represented by the smallest circle in the centre of the model to
illustrate the focus of the bereavement. At the start of the cancer experience, most
of the attention may be focused on the child's disease, then the palliation period and
finally the death. How the child faired during their treatment - the amount of
suffering, length of curative focused treatment, length of palliation period and where the
child died will all affect the bereavement experience as will any earlier opportunities
for exploration of anticipatory grief.
2. The parents
This is the group that has suffered the unthinkable - the loss of a child. The most
unnatural thing for a North American family is to grieve the loss of a child. With
one of the lowest infant mortality rates in the world, cancer still remains the greatest
disease threat to a child's life. How the parents go through bereavement will depend
on a number of factors, which include: the relationship they had with the deceased child,
marital status and the relationship between the parents (e.g. divorced, separated,
widowed) if there are surviving children, the relationship between the parents and the
bereaved siblings, the cancer experience itself, their socio-economic status and how they
accessed outside sources (the Other Players) for support.
3. The bereaved siblings
Who is to know of these children's pain unless we have walked in their shoes? Their
place in the world has been turned upside-down. This experience will redefine their
place in the family and in their world. They have not only lost a brother or sister, they
will likely witness their parents going through difficult times and with this may be
confusion and another sense of loss. Death of a sibling is likewise a very unlikely
occurrence in most North American families. Siblings too will be influenced by a
number of factors: age, cognitive and emotional development and hence their comprehension
of death, past experiences with death, other family member's reactions to the death,
family and social structure following the death, how long their sibling was sick and their
relationship with their deceased sibling.
4. The shared experience of parents and surviving siblings
These are the experiences that may direct the family's healthy grieving. Families
grieve together and separately - the inner circle signifies how the family lived together
before the death of the child and hence may influence how they deal with the loss of the
child/sibling. Factors that will influence this will be: birth order, how each
member was allowed to grieve and the relationship between the parents and the surviving
sibling as well the openness of communication experienced (e.g. fear of hurting or causing
pain to the other party).
5. The extended family: aunts, uncles, cousins, and
grandparents
The extended family includes the formal/legal relationships like aunts, uncles,
cousins and grandparents. It may also include stepfamilies and other significant
members who are considered family. They may have played an important role in the
family's life and are also grieving the loss of this child. The size of their role
will grow and shrink with the individual family.
6. The family circle
This signifies the whole family. It can grow and shrink to fit the individual North
American family and its physical make-up. The Family Circle is represented by a non-solid
line: the services accessed by the immediate family may also influence the outcome of the
grief and the spaces in the circle illustrate how and if the families avail themselves to
the services and sources of support available to most North American families.
Families will fall into three categories here; those who did not need a lot of
inner-family or outside support and therefore did not use it; those families who needed a
lot of support from other family members and outside services and received it and those
who needed it and did not access it - these three families will fare very
differently.
7. The other players
These are the players who may not directly affect the immediate family and are recognised
but not given space inside the main family circle. They may be sources of support
and caring, or may be simply other forces, which will ultimately have an affect on the
bereavement stages of the family.
Health Care: this group includes the hospital staff, nurses, doctors, dietary, child life
therapists or pedagogues and physical therapists. They have had influence on the family
throughout the child's illness and will have played an important role during the
diagnosis, treatment and perhaps the palliation period of the dying child.
Friendship will have been made here and there may be a strong link because this group will
know the deceased child and likely the family members very well because they worked so
closely with them for extended periods of time.
Friends: this group will include the friends of the deceased child, the bereaved siblings
and the parents. They will influence the family throughout the illness by being the
unrelated or non- family members who give support, love and guidance through a very trying
period. Sometimes the friends are the only source of support a family has because
the extended family members live too far away. This group can be large or small and
can also have other connections such as similar religious/spiritual affiliations,
co-workers or neighbours. They are a very significant group as often they are the
only ones that are there when unconditional listening and guidance is needed.
Peers: this group is other parents sharing in the cancer experience (children with cancer
and/or their children - may include members of the parents group or bereavement
group). Sometimes they too are travelling down the same road as the bereaved
family. They can be parents whose children are still surviving and are able to lend
support because they knew the child before he/she died. They too may or may not
still be going through the rigors of therapy or may be themselves bereaved. They met
at clinic during treatment, at parent support group meetings, during other activities like
children's cancer camps or family camps, and in some cases at anticipatory grief sessions
as offered at hospice facilities.
School: this group includes the deceased child's and the bereaved child's schoolmates and
teachers. They may have played an important role during the deceased child's
treatment and palliation period. School may be the place where the bereaved siblings
must return after the child dies and they must try to reintegrate back into the normal
flow - a big challenge for a bereaved sibling. How the siblings are invited to
interact with this group will influence their outcome.
Work: this group primarily includes the parent's employer. This group, ideally, will
have been supportive of the parents during the treatment and palliation stages.
Although there may be some resentment because of many missed hours and days of work, this
group tends to be supportive during the initial stages and then after prolonged grieving
tends to lose patients and wonders - when is the parent going to "get over it",
as the employer would like productive work.
Colleagues: this group includes professional co-workers, other staff, or peers of the
parents. They may be considered as friends (and therefore closer to the inner
circle) or they may simply be those who interact with the family in an acquaintance type
relationship.
Camp: this group may be comprised of fellow campers or families, depending on the type of
camp attended by the dying child, sibling or family. Generally it will be made up of
like-minded individuals who have all been there and understand. This may include
children who are
still undergoing therapy, long-term survivors, bereaved siblings or the entire family.
Social Work: this group is part of the health care team but will have played a role in the
families life through helping to access the services needed to assist them on their
journey. Social workers may be called on during the palliation period or in the months
following the death of the child to ensure that the family is coping as expected.
Psychology: this group is also part of the health care team or may be contracted as a
private practitioner or from within the hospital. The family or other health care
providers may have decided when to call in this service as psychologists are usually
accessed when there are greater psychosocial needs then normal. It is because of
this reason that the close bonds formed with this group will have an obvious influence on
the family's outcome.
Hospice: this group is part of the mental health care team and is contacted by either the
family or recommended by the central health care team. The services provided by this
group may include anticipatory grief counselling for all family members (including the
dying child) and other programs such as children and teen sessions during which the
participants can explore their grief reactions, be with peers and discover they are not
alone.
8. The spirituality
It is that which colours and makes unique every family's experience. This is the family's
or individual's religion or beliefs. This is the major single factor, which I
believe will shape and influence how the family will fare in the bereavement
experience. To the First Nations family (the North American Indian) it will be a
very different belief system as compared to a black protestant family in the Southern
United States, or the Jewish family is Central Canada. The many religions that make
up North America such as Jewish, Christian, Muslim, Buddhist and Hindu and the
accompanying traditions will colour the way in which the family will deal with the loss.
Conclusion
All societies will have different standards with which they will measure appropriate
behaviour during the bereavement period. Whether or not members of a family are observed
to understand death or are grieving in a healthy manner, is based on the interpretation of
the individuals in any given society. Culture too will exert a significant influence
on the way a loss is perceived and experienced by the family. Often times, it will
be their value base of religion, spirituality and their support network that will
influence how they will grief this devastating loss and their eventual healthy
recovery. Finally, how they accessed available services to help them cope will also
influence how they will emerge from the darkest period in a family's life.
Contact: Christine Wandzura (email: wandzura@cancercamp.ab.ca)