Palliative care

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Psychosocial support

Psychosocial issues in paediatric palliative care
The sick child
Supporting parents
Siblings of the sick child
- Sibling needs
Community based intervention
School
- Examples of specific things that schools can do are:
Religious and cultural considerations
Resources
References

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

References

1/ Herbert, M. Supporting bereaved and dying children and their parents.The Australian Council for Educational Research. Melbourne 1997.
2/ Bluebond-Langner M. The Private Worlds of Dying Children. Princeton University Press. Princeton 1978
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.

Last Updated 03-Feb-2009. Authorised by: Jenny Hynson. Enquiries: Carol Quayle.