Psychosocial
issues in paediatric palliative care
There is more to palliative care than symptom management. The
broader impact of illness, death and grief on children and their
families also needs to be considered and addressed. More
importantly, physical, emotional and spiritual needs cannot be
addressed in isolation as each affects the other. For example, a
child's pain can heighten parental anxiety and family distress may
adversely affect pain control. A multidisciplinary approach to
palliative care is required and there is therefore the potential
for a large number of individuals and services to become involved
in the care of the child. Children may also move between care
settings further adding to the complexity of care. Careful
attention to coordination is important to avoid overwhelming the
family. There is also the risk that families may receive inadequate
support as some members of staff mistakenly assume that others have
taken responsibility for a particular task. Where a large number of
services are involved, appointing a 'key worker' or case manager
may be helpful. This person may be a general practitioner,
paediatrician, nurse or allied health worker.
The sick child
Providing emotional and psychological support for the sick child
is as essential as providing relief of physical symptoms. Parents
may have many questions about the child's understanding of their
condition and how to be most supportive in allaying the child's
fears. Health care workers can support the parents' efforts by
providing information on how children understand illness and death
at various stages of development. See Development
and Death Concepts
Communicating
with children about death and dying
'A child can live through anything so long as he or she is
told
the truth and is allowed to share with loved ones the natural
feelings people have when they are suffering'
(Herbert, 1997) ﾮ1
Parents may instinctively want to protect their children from
"bad news". However, children very often know a great deal about
their illness and prognosis even when families and staff have gone
to great lengths to conceal such information. ﾮ2,3 Children may not
reveal what they know for fear of upsetting their parents, who then
falsely assume their child knows very little. Children are very
sensitive to discrepancies between verbal and non-verbal
information. They readily sense distress in those around them and
may feel anxious and isolated as a result. ﾮ3,4 They may also
generate fantasies to explain unusual behaviour in their parents
(eg. " I have been bad", "Mummy and Daddy don't love me anymore").
These notions may be more frightening than death and dying to a
young child.
Children very often ask staff questions about their illness and
prognosis. When confronted by a difficult question, staff may be
uncertain as to how best respond. Questions often come
unexpectedly, when the staff member is especially busy or
distracted. Children generally know the answer to the question
before they ask it. In this way the child who asks 'Am I dying?',
may already know the answer. What they seek is a person who can be
trusted to speak honestly with them. Responding with a question
such as 'What makes you ask me that?' or 'What is it that makes you
think you are going to die?' may elicit information on which to
base a response. The real question may be something completely
different. As already noted, children are also very sensitive to
discrepancies between verbal and non-verbal expression. A
reassuring answer accompanied by body language indicating fear or
avoidance, will heighten a child's suspicions and may cause them to
lose trust in that particular health professional.
What Parents Need to Know
Explaining to parents that children often ask questions about
their illness and prognosis provides a key opportunity for them to
consider how they might deal with these themselves. Staff can help
parents prepare for the sort of questions that might arise and
provide guidance based on experiences with other families. Although
parental wishes regarding the information that is given to their
child should be respected wherever possible, difficult situations
may arise where the child actively seeks information but the
parents insist that the truth be concealed. In these circumstances,
staff may need to provide parents with information and guidance to
help.
Planning in advance is helpful and a team approach, with parents
forming part of the team, essential. Parents bring particular
knowledge of their child as a unique individual. Staff bring
knowledge of the literature in this area and experience with other
families in similar circumstances.
Families need to know
that:
- children are generally more aware of their prognosis than those
around them believe.
- the fact that a child does not ask questions or speak about
their illness does not mean they are oblivious or indifferent.
Children very often protect their parents by feigning ignorance.
This is known as 'mutual pretence'. ﾮ2
- the anxiety generated by misinformation is potentially more
harmful than any arising from the truth. Children may have all
sorts of worries and fantasies, many of which an adult might not
expect. What will happen to the cat? Will my school friends forget
me? Will somebody be with me? Are mummy and daddy breaking up? Are
mummy and daddy cross with me? Did I get sick because I was bad?
Will it hurt? To a young child, abandonment and withdrawal of their
parent's love may be more frightening than the notion of death
because they have not yet acquired a full understanding of death.
An environment of honesty provides the child with opportunities to
share these worries. They need to feel they can trust those around
them.
- a dying child may be better able to cope with news of their
impending death than their parents. Children often know more about
their prognosis than others expect. There may be a sense of relief
that they no longer have to deal with this knowledge alone and are
free to ask questions and make plans.
- they are important role models. Children look to their parents
for cues regarding the appropriate way of reacting to a given
situation. While courage and calm will help reassure a child, it is
also reasonable for parents to show their sadness. It is helpful
for children to understand why their parents are upset so they do
not make incorrect assumptions. They may believe they have done
something to upset their parents, that their parents don't love
them anymore or that the family is breaking up. An honest
explanation may be reassuring.
In extreme cases where parents still insist that information is
withheld but the child is clearly distressed by this approach, the
health professional's duty is to the child. Advocacy for the child
is one of the health professional's major roles. It should be made
clear to the parents that if the child actively seeks information,
this will be explored and, if necessary, appropriate, truthful and
developmentally sensitive information given.
While, in general, honesty is the best approach, it is important
to recognise that not all children benefit from detailed
information and not all parents feel able to communicate openly
with their child. The best interests of the child are what is
important. Cultural factors also require careful consideration.
Similarly, health professionals should beware of confusing their
own needs with those of the child. Individuals may feel compelled
to 'tell all' even when the child's best interests are not served
by this intervention.
How to support the sick child
Below are some ideas to enable staff to facilitate more
effective communication and emotional support when engaging with
the sick child and/or for staff to encourage families to do.
- Listen
- Ask the child how they would like to be supported
- Find out exactly what it is the child wants to
know. Children who ask, "Am I dying?" may actually be
concerned about who will be with them, whether they will be in
pain, who will look after their pet and so on
- Let the child set the pace
- Allow the child to make choices where
possible
- Explain things in simple language appropriate
to the child's developmental level and cognitive ability
- Wherever possible answer questions
honestly
- Answer the question that is being asked. Try not to
burden the child with too much information or information they do
not want. Children may only want small amounts of
information at a time
- Children may find it easier to talk while drawing or doing some
other activity. They may also find it helpful to talk in an
abstract way eg. about a character in a story or during play with
dolls
- Artwork, play, story writing, music and other creative
activities may provide an outlet for emotion
- Normalise feelings of fear, anger and
sadness
- Try not to dismiss a child's beliefs unless they are
potentially damaging
- Model and encourage expression of emotion.
Children need to know they can express their feelings without
alienating those around them.
- Provide physical contact and comfort.
- Maintain routine to the greatest extent
possible.
- Involve the child's friends in visits. If this
is not possible, encourage letters, photos, email, videos etc.
Discourage social isolation but allow time for privacy
- Recruit the child's school teacher to help - this may be
helpful even where children are not able to attend school
ﾮ1
Supporting parents
Paediatric palliative care is as concerned with supporting the
parents and family as it is about caring for the child. However, it
is essential that the support provided be tailored to the
individual needs of the family at any given time. Each family
brings a unique composite of life experiences, social supports,
communication patterns, cultural beliefs, coping skills and other
factors to their experience of the child's illness. Failure to
respect this makes it impossible to provide individualised
care.
Communicating
difficult information to parents
The way in which difficult information is communicated is
important and sets the stage for the working relationship between
professionals and family. Health professionals need to be aware of
how their own feelings of anxiety, sadness and impotence may
influence this process.
What do families want?
Most parents desire a realistic appraisal of their child's
condition delivered empathically and with a sense of hope.
Realistic hope can be offered in terms of ongoing support from the
team, attention to symptoms and help to maximise the child's
quality of life. In situations where the family is pursuing
curative treatment, hope can be maintained by 'hoping for the best
but preparing for the worst'. While honest information is generally
appreciated, families do not need 'burdening with the badness of
the situation.' (Sister Diane Moore SJ, RCH, Melbourne)
Who should be present?
- Both parents if appropriate
- Other support person/s if the family wish
- Consultant in charge of the case
- A member of nursing or allied health staff known to the
family*
*More than two staff members may be
overwhelming.
Where should the
discussion take place?
- Provide Privacy
- Provide Quiet
- Provide a comfortable environment (have tissues and water
available)
- No interruptions (ask some one to take your phone/beeper, take
the phone off the hook)
- No physical barriers between family and professionals
How should the news be
delivered?
- Empathically
- In person, face-to face
- Allow plenty of time
- Establish what the parents know or suspect eg. 'How do you
think things are going?'
- Allow the family to set the pace
- Respect silence and do not feel compelled to fill it
- Allow expression of emotion
- Avoid being evasive
- Offer to help inform other family members eg. siblings,
grandparents
- Offer to meet again soon
What information
should be given ?
- Honest accurate information devoid of technical jargon
- Try to determine what the family wish to know eg. 'Are you the
sort of person who likes to know everything or just the basic
information?'
- Simple language - there will be time later to explore
details
- The prognosis is usually best given first
- Avoid ambiguous language such as 'we might lose the battle' or
'he's passed away'. The words death or dying should be used.
Be proactive
Distressing news may render the family unreceptive to detailed
information and unable to express their needs. It is therefore
important to provide multiple opportunities for discussion and to
offer suggestions to the family. Written information may also be
helpful.
Things
families may not ask but might want to know
'What do we do at the time of death?'
'Is it premature to think about the funeral?'
'Am I awful for wanting it all over?'
'What will it be like when he dies?'
A brief outline of the expected disease course should be given
and expected symptoms mentioned. It may also be helpful for some
families to understand what can be done for these symptoms. Many
parents have not experienced the death of a relative or friend and
may be frightened at the prospect of seeing someone die.
Information about the bodily changes that accompany death may be
helpful and it is possible to be very reassuring about the process
as for most children who are managed carefully it is very peaceful.
Families may be worried about pain and distress or a final dramatic
event. However, in most cases, the terminal phase is characterised
by the progressive shut down of the various organ systems. For
further information, please refer to Terminal
Care.
Reactions
Parents are often so shocked on being told that their child is
dying, even if this is confirmation of their own suspicions, that
they can not assimilate any other information at that moment. It is
important to slow the process down, provide multiple opportunities
to speak with the family, repeat information where necessary and
provide written information. Following the initial
shock, parents may feel confused
and overwhelmed. They may be frightened that they will not be able
to cope with the child's physical care or be able to control their
emotions. They may no longer feel able to care for their child and
they may not know how to balance the needs of the sick child with
those of other members of the family.
Parents also experience feelings of uncertainty. They may have
difficulty making sense of what's happening and are unsure of what
to do first. The life of the sick child and the family, their
future together, their hopes and dreams now seem somewhat
unpredictable. Their plans can no longer be counted on.
Denial occurs occasionally. For some parents it
may be an adaptive defence and does not always need to be 'broken
down'. In fact, great caution should be exercised in confronting
denial. Where denial is impairing optimal care and family
functioning however, it may be helpful to gently challenge
inconsistencies and explore underlying concerns. Asking a question
like, 'Is there ever a time even for a few seconds where you worry
things might not turn out the way you hope?' may provide a window
of opportunity for the parent to work through the issues
confronting them. If they respond by saying they do worry that
things might not work out, the next question should be 'Can you
bear to talk about it with me now?' (Peter Maguire, Professor of
Psychiatric Oncology, Christie Hospital, Manchester - proceedings
of the 5th biennial conference of the Australian and New Zealand
Society of Palliative Medicine, Townsville 2002)
Anger may arise from fear and confusion, often
as an expression of despair. Parents feel an enormous loss of power
and control in their lives. Their sense of justice is rocked. The
struggle to understand, make sense of the situation and control
emotions can produce anger. This may be directed at staff. In
managing angry parents, it is important
- To acknowledge the anger eg. 'I can see you're very angry'
- Not to take it personally
- Not to be defensive
- To allow ventilation of the anger 'Can you tell me more about
what you're feeling?'
- Not to dismiss the complaint or try and explain the situation
logically
- To set limits 'I can see you are angry and I am willing to
speak with you about it but I can not let you damage property/
threaten me etc'
Guilt is another common reaction amongst parents of dying
children. They may feel they failed to recognise and respond
effectively to the symptoms of the child's illness. They may feel
responsible because the illness is inherited. They may experience
'survivor guilt' believing that children are not supposed to die
before their parents. They may believe that their action or
inaction somehow triggered the illness. Parents may externalise
these feelings and blame others. Staff members occasionally find
themselves unfairly blamed for a child's illness or death. This may
feel hurtful but it is important not to become defensive or allow
this to impact on the care of the child. Any inclination to label
the family as 'bad' should also be avoided.
Parent's
needs and the role of the health professional
Information: Parents may want to know what to
expect. They may also want to discuss treatment options and plans
for symptom control. Parents say that full information allows them
to make decisions and helps them plan for the remaining time they
have with their child. In general, it is best to be open and honest
as a trusting relationships between parents and health care workers
provides a solid foundation for the challenges of palliative care.
Not all families are the same however and some will not want
details. For this reason, it is best to listen to what the family
is asking. When information is being given it is also important to
check the parent's understanding. This can be as simple as asking
the parents what they understand has been said to identify any need
for further clarification. It is also helpful to regularly check
that families are not being overwhelmed with too much information
(eg. 'I know this is a lot of information for you to hear all at
once. We can talk in more detail a little bit later on if you would
prefer').
To be listened to: Parents generally want to
discuss their situation with the many health care workers involved
in their child's care. They may need to speak about their concerns,
fears, hopes, and expectations on numerous occasions to clarify and
make sense of a world gone awry. The health care worker (whether it
be a paediatrician, social worker, or nurse) needs to provide time
and opportunities for parents to share these concerns. Doctors,
nurses and social workers may feel that families expect them to be
wise and to 'fix the problem'. Staff may also expect this of
themselves. Parents would obviously wish that someone could cure
their child but they know the reality and what they seek is
support. Health professionals may feel they have nothing to offer
if they can't cure an illness or solve a difficult situation. On
the contrary, by listening to the concerns of parents, providing
guidance, affirming their skills and resources and staying with
them through it all, staff can make a major difference to how a
family copes.
Control: Parents talk of losing control of
their lives. The health care worker can assist parents to regain a
sense of control by providing them with information, including them
in discussions regarding care, allowing them to decide who is
allowed to visit and when, and so on. Making decisions for (rather
than with) a family can be deskilling and destructive. Parents need
to be viewed as competent partners in their child's care.
Emotional support: Parents with a sick child
grieve for the 'normal' child they no longer have. With this grief
comes a range of strong feelings and emotions which add to the task
of caring. Parents need acknowledgement, compassion, empathy and
non-judgemental understanding. Extended family and friends may
offer support but some parents find it more helpful to talk to
someone outside the family. All health professionals involved in
the care of the dying child and family should be able to offer some
level of support. Emotional and psychological support may be
available from a member of the primary team the family has
developed a close relationship with over the time of the child's
illness (eg. a social worker, a pastoral worker, a worker from a
palliative care service or an independent counsellor/psychologist).
(Contact us for more information.)
Spiritual support may or may not be part of a family's support
system when their child becomes sick. The child's illness may cause
parents to question their faith, renew their faith or explore new
avenues. Spirituality includes, but is not restricted to religion
or faith. Local clergy, ministers of all faiths and other spiritual
leaders are available to help during this confusing time.
Normalcy: At a time of such immense change and
disruption, families may struggle to regain a sense of normality by
participating in their usual activities and other social events. A
return to school can provide a reassuring rhythm through its
structure and routine. Health professionals can help families
achieve this by scheduling treatment and admissions around
important activities, facilitating the child's care so they can
attend school and encouraging the family to maintain routines and
activities.
Practical support: Parents need advice and
guidance from various professionals in order to learn what is
available to help them. Most parents would not know where to begin
if they have not had any previous experience. Liaison between the
hospital and community team is a helpful step.
Medical equipment may be required as part of the child's care,
either routinely or in an emergency. It is possible to have
equipment items on loan from a hospital or community agency such as
a palliative care service. Health professionals including social
workers, occupational therapists and physiotherapists may be needed
to make assessments of the child and family's needs.
Parents need the telephone numbers of key people to call
when they have questions or problems. They will need to know who to
call during business hours and who to call after
hours.
Caring for a sick child at home is intense and parents are at
risk of physical or emotional exhaustion. Many parents express a
need to have help in the house or some form of respite care.
Parents may also need time to themselves. It is important for
health care professionals to take account of the needs expressed by
parents at various points in the child's illness, and help them
access appropriate supports in a timely manner. It is the
responsibility of all health professionals to either (i) actively
locate and mobilise the supports themselves or (ii) speak to an
appropriate person in the multidisciplinary team who may be able to
assist with the organisation of supports.
Many parents experience financial difficulties when caring for a
sick child which again is beyond their control. Financial hardship
can create a lot of stress for families and needs to be addressed
early on. A member of the health care team needs to advise parents
about their entitlements as well as providing information regarding
organisations that provide funding or financial support. Advocacy
may be required.
Siblings of the sick child
Relationships within families and communication patterns are
important factors in determining how siblings react to a brother or
sister's illness. It is easier for children to adapt to having a
sick sibling in a family where it is usual to discuss matters
openly and to share feelings and emotions. How parents cope will
also have an effect on how the child manages changes in the family
circumstances.
Siblings may find themselves separated from their parents for
long periods. Even when parents are physically available they may
be distracted or unable to offer the emotional support needed by
siblings. Children may find themselves in an unfamiliar setting
with unfamiliar routines. Parents, relatives and friends may seem
anxious and upset, and the children may hear snippets of
information that sound very confusing or frightening.
Siblings demonstrate a wide range of emotional responses to
these circumstances. These will be dependent on their stage of
development, coping skills and the responses of those around them.
New demands and new routines sometimes lead to anger, frustration,
and exasperation in the well children. They have mixed feelings
about the ill child, ranging from guilt to jealousy. They may worry
that they may have caused the disease or that they may catch it. On
the other hand, they may become jealous of the attention given to
the ill child.
Physical symptoms may develop such as nausea, vomiting,
diarrhoea, constipation, headache and aching limbs. Symptoms
similar to those experienced by the sick sibling may also be
reported.
Behavioural changes may occur including unusual aggression, temper
tantrums or withdrawal from family or friends, rudeness, bullying
and demanding attention. Regression in the form of thumb-sucking,
enuresis, toileting problems or school refusal may occur. Sleeping
problems include a fear of the dark, nightmares, waking in the
night and wanting to sleep in the parents' bed. Older children and
adolescents may withdraw completely or indulge in risk-taking
behaviour.
It is important to note that some siblings will not experience
any of the above.
Sibling
needs
The needs of siblings are similar to those of the dying child. ﾮ
6
Information - parents should be encouraged to
be honest with siblings and to provide them with information at a
level appropriate to their developmental stage. This might include
facts about the illness, what treatment is being given, and what to
expect. They may need reassurance that they and their parents are
not likely to become ill and that nothing they did or said caused
the illness.ﾮ7 It may also be helpful to explain that mummy and
daddy are very sad and worried and if they are upset it is not as a
result of anything the sibling has done. Health professionals can
help by providing guidance on how to talk with siblings and
opportunities for parents to practice answering questions. They can
also offer to speak with siblings and answer their questions
directly. This will help the sibling to feel included and
important. It may also be helpful to write down the name of the
illness. Many resources are available for parents faced with the
task of talking with and supporting siblings. (for more information contact
us)Siblings may have concerns regarding their own health and if
they are reporting symptoms may benefit from the reassurance of a
thorough physical examination by their doctor.
Emotional support - Siblings may try to protect
their parents from added distress by not burdening them with their
own worries. Many are known to suffer in silence. Unexpressed
emotion may manifest as school failure, behavioural problems and
physical symptoms. Siblings may also try to excel at school to
'cheer their parents up'. Feelings of resentment, jealousy,
isolation, fear, guilt, anger and despair need to be explored,
acknowledged and normalised. Children need to feel they are being
listened to and understood. Sometimes these issues are best
explored in the third person eg. 'Some children have told me they
feel angry that their brother or sister is sick. How do you feel?'.
Alternatively, art or play can be used to gently encourage
expression eg. drawings or play with puppets or dolls. Staff should
be careful not to read too much into the content of play and
artwork however. It may be helpful for the sibling to know that
other children in their situation have felt the same way. Support
groups may be very beneficial for some children. (for more information contact
us)
It is helpful if parents are able to dedicate special time to be
with their well children. Some parents may need permission to do
this as they feel guilty if they leave the sick child's side.
Families who are able to care for their child at home find they
have more opportunity to attend to the needs of siblings. Where
parents are physically or psychologically unavailable to siblings,
an adult with whom the child has a trusting relationship, can
provide some level of support.
Routine - Whilst difficult to maintain at a
time of such upheaval, familiar routines are important for a
child's sense of security. This includes going to school,
continuing with extracurricular activities and maintaining contact
with their own peer group. Siblings may need to know that it is OK
to have fun.
Contact with the sick child - Regular visits to
the sick child in hospital allow siblings to see what is happening
for themselves ie. their brother or sister is very sick, the
doctors and nurses are helping them feel better. It is important
however that they are adequately prepared for what they might see
eg. 'John is very sleepy. He might not be able to talk to you but
he will know you are there. He has medicine running into his body
through a tube in his arm&this doesn't hurt. etc'. In the rare
circumstance where siblings cannot visit, regular updates, videos
and photos can be helpful. Siblings can feel included by sending
drawings, favourite toys, photos and videos to their brother or
sister.
Inclusion in the care of the sick child
-Siblings may benefit from the opportunity to be included in the
care of the sick child and in the family's experience. Children can
help by taking a drink to the child, changing the channel on the
TV, reading a story, playing games, taking the cat in to visit,
etc. Staff involved in caring for the family may also find
opportunities to include siblings, even in a hospital setting.
School - It is helpful if the sibling's school
teachers are kept informed of the sick child's condition. Schools
can also help by identifying one person to whom the sibling can go
if they need help.
Community Care
Most children who need palliative care will be looked after in,
and by, their local community. It makes sense then to foster links
with community supports early in the child's illness so they are
well established and in a position to respond as the child's care
needs increase. Resources available to families include:
- General practitioner who will often know the child and
family
- Community-based paediatrician
- Palliative care services
- Royal District Nursing Service
- Respite support
- Counselling
- Religious groups
- Local council services
- Family and friends
- Community agencies (which may offer family support and
financial assistance)
Since children will often move between hospital and community
settings, it is important there is a collaborative approach to care
and communication flows easily in both directions.
School
The following is adapted from 'A Practical Guide to Paediatric
Oncology Palliative Care', Royal Children's Hospital, Brisbane
1999. Please see the Acknowledgements section for further
information on this publication.
Teachers, school friends, and parents represent a significant
part of the child and family's community. A school can contribute
to the support of the family by maintaining :
- important relationships (eg. peer friendships for the dying
child; child-adult relationships)
- normality and routine for the child and siblings
- the parents' social network
- specific support regarding particular needs
Many families will feel able to liaise directly with the school,
sharing information, setting goals and problem solving. Other
families may prefer the doctor, nurse or social worker to be
involved in these processes. Many paediatric centres and units also
have liaison staff to assist with issue related to school. With the
permission of parents, the classroom teacher may benefit from
support from health professionals with regard to understanding the
child's condition, treatment, and physical needs while at school.
Some school staff may feel very anxious about having a sick child
at the school but with appropriate support and planning this can
generally be achieved. Hospital staff and liaison teachers are
available to meet with school staff to develop a plan of care.
While most schools are very supportive of children wishing to
remain at school, health professionals may need to advocate for
children in this area.
Examples
of specific things that schools can do are:
- enabling the sick child to visit the school or attend classes
for a period of time.
- ensuring that students maintain contact with the sick child
through home visits, letters, cards, photographs, videos and
emails.
- establishing a key contact person in the school who is
responsible for maintaining contact with the child's family.
- having a clear plan for getting messages to siblings quickly so
they feel confident they can be contacted when needed.
Siblings require careful attention. Quite apart from the
distress they experience in relation to their brother or sister's
illness and the worry they may have for the family generally, they
often describe feeling "different" from their peers. School friends
may not know how to react and they may be afraid of "catching" the
disease. Consequently, the sibling of a dying child is at risk of
social isolation. Teachers and other members of the school
community are ideally positioned to watch for such reactions and to
intervene where necessary. Other behaviour changes will also need
to be noted and addressed where necessary. The school may be able
to provide opportunities for the sibling to talk with a counsellor
about their concerns. The Seasons Loss and Grief Program in
Melbourne is able to offer educational/peer support programs to
school children (see Resources in Bereavement Section).
In a school there will be a range of reactions and responses
regarding the illness of a student. It is important for schools to
identify those people who may be at risk of stronger reactions and
therefore may require further support. These might include close
friends of the child, students with pre-existing psychological, or
emotional problems, children with chronic illnesses or children who
are bereaved themselves. The health care professional may be able
to assist the school to understand palliative care issues and grief
processes and how to use this knowledge in their interactions with
the sick child, siblings, other students and staff. School based
intervention when a child dies is discussed in the Bereavement
Section.
Religious and
cultural considerations
Cultural and religious beliefs influence how a family react to
illness and death as well as the rituals they perform at the time
of death and in bereavement. Those responsible for caring for
children and their families at such a time need to understand and
respect cultural and religious needs. It is important that
assumptions are not made on the grounds of ethnicity or religion
because a wide range of beliefs may be encountered within any given
group. The most effective way of understanding an individual
family's needs is to ask them. Provision of material in different
languages, consideration of gender when conveying information, and
provision of an interpreter may assist. ﾮ 8 More importantly,
acknowledging one's limited knowledge of a particular culture and
its customs and seeking to learn more about it is a significant
step in bridging the gap. Palliative Care Australia has produced
'Multicultural Palliative Care Guidelines' which serve as a useful
guide to some of the issues that may be encountered.
It may be helpful to;
- Seek specific information directly from the family or a
representative of the same cultural or religious group
- Ask about how the child and family deal with communicating
about different issues(eg. sickness, hospital, death and
dying).
- Consider gender - in some societies and with some conditions,
information conveyed by a man to a woman or vice versa would be
considered highly improper.
- Find out who the health care professional should be addressing
when conveying information about a child's condition.
- Consider the importance of the extended family and kinship
networks.
- Understand that the provision of written material is of limited
value in circumstances where families are unable to read written
language.
- Understand that the provision of an interpreter does not
entirely solve the problem. The social strata in many ethnic
communities are very strongly adhered to and if the health
professional provides an interpreter from a different situation to
that of the family it may be perceived as an insult.
- Acknowledge the importance or influence of religious beliefs or
a religious community in the response to progressive, terminal
disease.
- Gain some understanding of the depth of the family's beliefs,
rituals, customs and values. This will impact on how the health
professional provides support to the child and family.
- Determine who the family relies on for emotional and practical
support. ﾮ8
Acknowledgements
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
Palliative Care Australia disseminates information to the
community on matters relating to palliative care.
Phone: (02) 6232 4433
Website: www.pallcare.org.au
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
The School can provide formal and informal psychosocial support
to the sick child, siblings and family.
The Hospital can make referrals for the child and family to see
a social worker, mental health worker and/or chaplain for further
psychosocial support - whether this is be counselling, information,
or the organisation of practical supports in the community.
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
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parents.The Australian Council for Educational Research. Melbourne
1997.
2/ Bluebond-Langner M. The Private Worlds of Dying Children.
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3/ Waechter EH. Children's awareness of fatal illness. Am j nurs
1971; 71: 1168-72.
4/ Clunies-Ross C, Lansdown R. Concepts of death, illness and
isolation found in children with leukaemia. Child: health care dev
1988; 14: 373-386.
5/ Royal Children's Hospital,Brisbane. A Practical Guide to
Paediatric Oncology Palliative Care. Royal Children's Hospital,
Brisbane.1999.
6/ Goldman A. Care of the dying child. Oxford University Press.
London. 1994.
7/ Cook P. Supporting sick children and their families. Harcourt
Publishers. London. 1999.
8/ Taylor A, Box M. Multicultural Palliative Care Guidelines.
Palliative Care Australia. 1999.