6 Psychosocial care and support

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Contents

• Objectives
• Assessing a child’s psychosocial needs
• The right to continuing education
• The role of the community in children’s palliative care
• The role of the family in children’s palliative care
• The need to support the siblings
• Principles of relating with the child and the family
• Assessing a child’s psychosocial needs
• Case studies

Objectives

When you have completed this chapter you should be able to:

1. Assess the child’s psychosocial needs.
2. Recognise the importance of play in sick children.
3. Recognise the right of children to continue their education where possible.
4. Understand the role of community in children’s palliative care.
5. Understand the importance of the family in children’s palliative care.
6. Know how to provide psychosocial care and support to the family.
7. Understand the need to support siblings.
8. Apply the principles to develop a helping relationship with the child and family.

Assessing a child’s psychosocial needs

6-1 What is psychosocial care and support?

Psychosocial care and support is concerned with the psychological, social, emotional and spiritual wellbeing of the patient and their family members. The care and support involves encouraging patients and family members to express their feelings about the disease and their present circumstances while providing ways to improve their psychological and emotional wellbeing. To provide appropriate psychosocial care and support, children need to be considered within the context of their family and community.

Psychosocial care and support is concerned with the psychological, social, emotional and spiritual wellbeing of the patient and their family members.

Note

Psychological care and support includes issues relating to self-esteem, adaptation to and acceptance of the illness and its consequences, communication, social functioning and relationships.

6-2 What are the psychosocial needs of children with a life-limiting or life-threatening illness?

The effects of a life-threatening or life-limiting illness are likely to affect all aspects of the child’s social and emotional development. Psychosocial needs are unique to each child and change over time. When assessing their psychosocial needs, it is helpful to keep in mind the progression and impact of the disease, the child’s age and maturity, and other factors such as personality type, resilience and cognitive ability as well as the quality of the child’s personal relationships.

Note

Erik Erikson’s 8 Stages of Psychosocial Development and Jean Piaget’s Theory of Cognitive Development are very helpful in understanding the impact that illness will have at different ages and are useful in helping understand children’s responses to and understanding of illness, death and dying.

6-3 Do children of different age groups have different psychosocial characteristics?

Yes, according to Erik Erikson’s theory, people pass through 5 of 8 psychosocial stages in their lifetime and during each stage there are critical issues which need to be resolved and involve the person’s relationship with others. The 5 stages children pass through are infancy, early childhood, preschool, school age and adolescence.

6-4 What are the psychosocial characteristics of infants?

Very young infants are entirely dependent on their parents or caregivers, especially the mother, to provide for their needs and are learning to trust or mistrust adults. They are focused on what is physically happening to them in the present and don’t consider the future. They are likely to experience anxiety and fear when confronted with unfamiliar adults such as doctors and nurses, in unfamiliar environments. This is made worse when they undergo painful procedures. Comforting the sick child with a lot of close physical contact, preferably from a known and trusted adult, and a predictable routine will help them to feel less anxious and more secure.

The infant’s strongest emotional need is to feel safe and secure and to trust the adults who care for them.

6-5 What are the psychosocial characteristics of young children aged 18 months to 3 years?

Toddlers have a desire to explore their world. Their main goal is to gain a sense of independence and they will often insist on doing things themselves. Denying them their independence and curbing their curiosity can lead to feelings of shame and self-doubt. Separation anxiety is common for children of this age so the sick child of this age should be with the adults they know and trust, be given choices and allowed to continue doing things for themselves whenever this is possible.

Toddlers have a strong desire to be independent and to do things for themselves.

6-6 What are some of the psychosocial characteristics of children aged 3 to 6 years?

Common characteristics of pre-school children are:

• The development of courage and independence are central to the pre-school child’s psychosocial development.
• They are learning to initiate activities, which may include risky behaviours.
• They are discovering how to gain control over their world through their social interactions and play.
• They are concrete thinkers so the use of metaphors in explaining their illness or what happens when people die should be avoided.
• They display ‘magical thinking’ which may lead them to believe their illness is a result of their thoughts or actions so need to be reassured that this is not the case.
• Positive interactions and achieving goals will help them develop a sense of self-confidence and responsibility.
• It is crucial for these children to be given opportunities to play, including those with a life-limiting diagnosis.

Central to the pre-school child’s psychosocial development is learning to be courageous and to initiate activities.

6-7 What are some of the psychosocial characteristics of children aged 6 to 12 years?

Common characteristics of school-going children are:

• The school-going child starts comparing themselves with their peers and either feels pride in their accomplishments or feels inferior if they believe they don’t measure up.
• These years are critical for the development of self-confidence and if given opportunities and encouragement they will discover where their talents lie.
• They are capable of more abstract thinking and can usually understand cause and effect with regard to their illness or condition.
• Children of this age need reassurance that they are valued and should be given honest answers and accurate information about their illness, without being patronised.
• They also need time to play and time to socialise with friends.

The school-going child is strongly influenced by and concerned with the approval of their peers and is beginning to find what talents they may have.

6-8 What are some of the psychosocial characteristics of children aged 12 to 18 years?

Common characteristics of adolescents are:

• The main task of adolescents is to develop a sense of self as they may ask existential questions such as ‘Who am I?’ and ‘What do I want to do with my life?’
• Adolescents who are not afforded the freedom to express their sense of identity may develop a poor sense of self and will feel confusion about their roles and their future.
• They are able to think in abstract concepts and may think deeply and question why they have been ‘chosen’ to experience the illness.
• It is crucial that adolescents are provided with regular opportunities to express themselves through talking, writing (keeping a diary), poetry, music, movement and art.

Adolescents are developing a sense of who they are and will seek a deeper meaning to their suffering.

6-9 What psychological problems may be experienced by children who are ill?

Children living with a life-threatening or life-limiting illness are vulnerable to numerous psychological problems for various reasons which need to be assessed and managed by the team. Children who are very ill are likely to suffer from ‘total pain’ which includes physical, social, emotional and psychological pain. These may include:

• Actual separation from loved ones leading to ongoing separation anxiety
• Fears and concerns about the effects of their illness
• Deteriorating physical or cognitive abilities
• Anxiety about the possibility of their own death
• Feelings of shame and stigma related to their illness
• Poor communication with family members due to denial or mutual protection
• Shame about changes in their appearance or disfigurement
• Fear of rejection by friends and peers
• Low self-esteem and a poor self-image due to the effects of the illness
• Anxiety, depression, post-traumatic stress and adjustment disorders.

Children who are very ill are likely to suffer from ‘total pain’ which includes physical, social, emotional and psychological pain.

Note

Dame Cicely Saunders, the founder of the modern palliative care movement, referred to the concept of ‘total pain’ as the suffering that includes all of the person’s physical, psychological, social, spiritual, and practical struggles.

6-10 What social problems may be experienced by children with a life-threatening or life-limiting illness?

Common problems are:

• Children who spend long spells in hospital or away from school due to illness have limited contact with peers and friends, leading to feelings of isolation and loneliness. They may experience a sense of rejection from being excluded from normal activities such as playing with friends and attending school.
• A change in physical appearance or the development of a disability may make the child feel embarrassed and refuse to socialise and see friends.
• It is also common for relationships within the child’s immediate family to be adversely affected because the focus of parents and other adults is on the sick child, not their siblings.

Children of different ages and stages of development have unique and changing psychosocial needs that must be assessed and managed.

6-11 Why is it important for a child with a life-limiting or life-threatening illness to play?

Play is the ‘universal language’ of childhood and the time and opportunity to play is every child’s right. Play can provide a means of communication, can be used to distract children from stressful situations and is essential to the holistic development of a child. Therapeutic play and play therapy are recognised ways of responding to the emotional and mental health needs of children. Therefore, play becomes even more necessary when a child is made more vulnerable through illness or disability. Despite this, providing time and opportunities to play can be overlooked or considered to be of little importance when the focus of adult carers is on treating clinical symptoms of the illness rather than on lessening the psychological impact the illness may have on the child.

We need to ensure children with a life-limiting or life-threatening illness have many opportunities to play because:

• Play is central to the life of children and is the means by which they explore and master their world. Without opportunities to play, a child is likely to lose the desire to participate in the world around them.
• Play is a non-verbal expression of their experiences of reality and provides a safe and acceptable way for the child to release their anxieties, fears and concerns.
• Observing how children play can provide valuable insight into how well they are coping emotionally with their illness.
• Play provides opportunities to process trauma which may be associated with the reality of the child’s illness and possible death.
• Play distracts the child from the reality of their illness and its side effects, including pain.

6-12 How can you facilitate play for children with a life-threatening or life-limiting illness?

The role of play provides not only a pleasurable distraction and temporary break from painful procedures and unpleasant experiences that often accompany a life-threatening or life-limiting illness, it also allows the sick child the opportunity to escape from the real world with all its emotional trauma and physical challenges into a world of their own making. A fantasy world where they are the ‘masters of their universe’ and can decide what magical powers they possess, is a gift that only play can provide. Play is therapeutic in nature and essential for the holistic development of children. It also provides safe and acceptable ways for them to process strong feelings and release fears and concerns they may have about their illness.

To facilitate play for children who are sick it is important to:

• Become familiar with the developmental stages of children to provide the most suitable toys and games for them.
• Give children a choice of games and toys they wish to play with.
• Include specific times to play in any daily programme of care.
• Rotate toys offered to children to keep them interested in play.
• Monitor play to ensure children’s safety at all times and discard broken toys.
• Keep in mind that many interesting toys can be created from waste materials.
• Keep toys clean and regularly sterilised to prevent cross infection.
• Make time for social play with friends and peers.

Play is therapeutic in nature and essential for the holistic development of children. It also provides safe and acceptable ways for them to process strong feelings and release fears and concerns they may have about their illness.

Note

Boucher, Downing and Shemilt in the paper ‘The role of play in children’s palliative care’ published in the journal ‘Children’ in 2014 write, ‘The ability for the child to find a voice with which to express his or her innermost anxieties, fears and concerns and have these addressed makes the provision of a safe place to play, suitable toys to play with and regular play times in the presence of adults who have an understanding of play therapy and the therapeutic value of play, are vital elements in the delivery of good palliative care for children.’

The right to continuing education

6-13 Why is it important for children to continue their education?

One of the key differences between adult and children’s palliative care is the right for children to continue their education. The important role schools can play in providing psychosocial support to the child and to the family throughout the course of the illness, at the end of a child’s life and during the period of bereavement should never be underestimated. Particular attention should also be given by the school to the emotional wellbeing of siblings who may attend the school as well as to close friends of the child.

Continuing a child’s education is important because:

• Every child has a legal right to an education despite having a life-threatening or life-limiting illness.
• School attendance can play a major role in the holistic development of children and provide then with a sense of purpose and routine.
• Attending school can offer opportunities for the child to continue learning, to interact with others and provide distraction from the anxieties and worries related to their illness.
• Attending school provides the child with some sense of normality in an otherwise abnormal experience and lets them feel connected to their friends and community.
• Seeing their child continue to learn or attend school provides families with some hope and a sense of achievement.

6-14 How can you facilitate access to education for children?

Returning to school after the diagnosis of a progressive life-limiting illness or after a prolonged absence can be difficult. Many concerns may be raised by the school and the parents. It is possible that the child has experienced major losses and lifestyle changes and their appearance may have changed as a result of treatment. These changes can affect the child’s emotional health, social interactions, and school performance, and it is important that any challenges are dealt with by the school and the staff in a compassionate and sensitive manner.

Ways to help children continue their education should include:

• Close cooperation between the school, the teachers involved, the care team and the family
• Including the teacher as an integral member of the care team
• A visit by a team member to the school to help facilitate the child’s continued education and ease concerns that teachers and students may have
• Considering the need for wheelchair ramps and other safety precautions to be put in place before the child returns to school
• Infection control may be a concern that needs to be managed in a responsible manner
• Talking to teachers and school peers about the child’s illness to prepare them for any physical changes that may occur as the illness progresses
• Encouraging the school to allow the child to attend school for short periods of time and to accommodate their need to sometimes just be present without participating in work or homework activities
• When a child is unable to attend school, their education can be continued through visits by the teacher, employing a home tutor or online communication.

Making sure children continue their education when sick is their right and takes effort as well as good communication and cooperation between the school, family and care team.

The role of the community in children’s palliative care

6-15 What is a community?

A community is a social group of people who share a common environment with similar goals, beliefs, resources, preferences and needs. The community will affect the identity of individuals living within it and understanding the role played by the community as well as the roles of family members is vital in assessing the psychosocial needs of a child and providing support. Families who are not well integrated within their community will likely need greater input from the team than those who are.

6-16 What is the community’s role in supporting a child with a life-threatening or life-limiting illness?

Most families will have people in the community around them who do already or could provide psychosocial support. It is necessary to assess what support is accessible to the child and family and what gaps exist.

The child and family form the centre of community support surrounded by neighbours, who in turn are surrounded by their broader community, including local charities and faith-based organisations. All of these are part of a larger social system that incorporates governmental and civil structures such as schools, clinics and hospitals. There are people within each of these circles of support that are able to assist the child and family.

Figure 6-1: The community circles of support.

The child and family are at the centre of a community that should be evaluated and involved in providing aspects of psychosocial support.

Note

Amery et al in the ‘Oxford Textbook of Children’s Palliative Care in Africa’ refer to community circles of support.

6-17 What aspects of social support should be assessed?

It is necessary to assess the following aspects of community support:

• Housing: The team need a clear idea of the child’s living conditions. Housing without electricity or running water is likely to be a problem for the sick child. In some circumstances small adjustments and changes can make a home more suitable. There may be a need to link families to governmental programmes or non-governmental organisations (NGO’s) to provide suitable improvements to the child’s housing situation.
• Transport: Challenges around transport are often the cause of treatment non-compliance. It is therefore vital to evaluate what transport challenges exist and look for ways to overcome these. Where possible, regular home visits by a team member could help to reduce this additional burden.
• Finance: Caring for a sick child can cause extreme financial hardships for some families. They may need to find money for medical treatment, transport to and from medical facilities, prescribed medicines, special medical equipment and specific dietary requirements. Some parents will go without food for themselves to pay for their child’s treatment. We must assess the financial situation of the family and assist in finding ways to overcome the challenges these present. This may be done by linking the family to government social services or NGO’s. It will also be important to help families plan for future costs that may be related to the child’s illness.
• Social support services: It is not possible for the care team to fulfil all the psychosocial needs of a child and family. It is important to know what services are available to families within communities, to build a network and a database to facilitate referral processes wherever possible.

Housing, finance, transport and available social support services need to be properly assessed and the necessary referrals made where possible to ensure the family’s most urgent needs are met.

See chapter 4 for more information on how to facilitate the referral process.

The role of the family in children’s palliative care

6-18 What is a family?

A family is a social unit living together. There are many different types of families. These include:

• Biological parents
• Step-parents
• Married or co-habiting couples (heterosexual and homosexual)
• Single parents
• Psychological and social parents such as close family friends
• Children who are in extended family care such as foster care, children’s homes and adopted children.

6-19 What is family systems theory?

Family systems theory suggests that individuals cannot be understood in isolation from one another but rather as a part of their family as the family is an emotional unit. It goes on to say that families are systems of interconnected and interdependent individuals, none of whom can be fully understood on their own.

Family systems theory explains how individuals in a family are emotionally influenced by each other.

Note

Family systems theory was introduced by an American psychiatrist, Prof. Murray Bowen, in 1974. It is a model of relationships which explains how an individual functions emotionally within the context of their family (friends or work colleagues) with each member having an influence on the other members.

6-20 What aspects of the family should be assessed?

Aspects that need to be assessed include the following:

• Type of family: There are many different types of family structures within South Africa and southern Africa, from extended families to single parent families and even families where children are the primary caregivers. The care team must understand the family dynamics and who has the right to make decisions for the child. In some cases, this may be a grandparent or even a community elder.
• Roles within the family: Due to the devastation caused by HIV/AIDS many South African children are cared for by their grandparents and sometimes by other relatives. The roles of different family members including parents, grandparents and siblings as well as the role of the child should be identified and considered.
• Family bonds and sub-groups: Family dynamics, bonds and attachments are usually present and should be identified. For example, a child may be closer to maternal grandparents or certain aunts and uncles. These bonds may be tested and may change as a result of the child’s illness.

6-21 What are the main elements to be included in a family assessment?

The main elements to be included in the family assessment include:

• The child and family’s knowledge and reaction to the disease
• Beliefs, attitudes and expectations regarding treatment and outcome
• Coping ability during previous crises
• History of depression and/or non-prescribed drug and alcohol use
• Nature and stability of residential and occupational arrangements
• Quality of relationships between family members and extended family members
• Who is aware of the diagnosis and what was their reaction?
• Socioeconomic status of the family
• Socio-cultural factors or religious beliefs that might affect treatment decisions and adaptation
• History of previous losses
• Sources of emotional and financial support and availability of medical insurance
• Health status of all family members.

Note

See Amery, J. Children’s Palliative Care in Africa Oxford Textbook Chapter 13 page 235.

6-22 How do you assess a family unit?

A good way to asses a family is through the use of a genogram. A genogram is a pictorial display of a person’s family relationships and medical history. It goes beyond a traditional family tree. They help us find out what the family has been through, how they have coped previously and also helps with understanding family dynamics and relationships. It is important to always put a date on the genogram, and a date next to any additional information recorded.

A genogram is a graphic illustration of the family members which helps to understand how the individuals relate to each other.

6-23 How can genograms be used to understand a family?

Through the asking of questions, genograms can be used to map out and help understand the following:

• Who is in the family, e.g. father, brother, son?
• Health status of all family members
• Child and family’s knowledge of and reaction to the illness
• Beliefs, attitudes and expectations
• Coping ability through previous crises
• History of psychological illness and drug or alcohol abuse
• Nature and stability of residential and occupational arrangements
• Quality of relationships
• Socioeconomic status
• Socio-cultural factors or religious beliefs that might affect treatment decisions
• History of previous losses
• Sources of emotional and financial support.

Where possible, a genogram should look at three or more generations. Special symbols are used in genograms to show the relationship between family members.

Note

Genograms are a commonly used tool to assess how a family is made up and functions and to understand how a life-threatening illness may affect the dynamics of the family.

Note

When creating a genogram, it is vital to include a key as a guide to the meaning of the symbols used. Some organisations may ascribe different meanings to symbols on the genogram.

Figure 6-2: The standard symbols used in drawing a genogram.

Figure 6-3: Three examples of genograms using the standard symbols.

6-24 What common problems do families face?

Families will face multiple psychosocial problems when a child is diagnosed with a life-threatening or life-limiting illness. These may include:

• Sadness, anxiety and fears about how they will cope
• Parents may feel anger, blame, guilt and regret
• Anticipatory grief for the impending death of the child
• Feelings of guilt for not being able to prevent the illness or protect the child
• Separation if a parent needs to stay in hospital with a child
• Mutual protection resulting in communication issues
• Financial strain due to treatment and transport costs
• Stigma that may be related to the illness
• Siblings taking on caretaker roles while parents care for the sick child
• Siblings feeling neglected and jealous of the sick child
• Siblings feeling ‘survivor guilt’ that they are well when their brother or sister is sick or has died.

Families of children diagnosed with a life-limiting illness will be dealing with many psychological problems.

Note

One mother described her experience of hearing of her son’s diagnosis as follows: ‘When my son was diagnosed, I felt as if all my self-esteem had disappeared. I could not see my future, and I felt like my family was a freak show for everybody to look at. All I could think about was his death and thoughts of this preoccupied everything I did.’ (InterACT. There’s No such Thing as a Silly Question. Very Special Kids in partnership with the Gandel Charitable Trust: Melbourne, Australia, 2007.)

6-25 How can the family unit be supported?

Holding regular family meetings where individual family members are encouraged to express their feelings and ask questions will help to ease concerns and provide reassurance that you have their best interests at heart. During these meetings you can ask probing questions and listen to the answers with deep intent.

There are a number of useful principles to keep in mind when supporting a family:

• Families are resilient and have many coping techniques that have assisted them through crises in the past. We need to help them identify these coping techniques and help them to remember how they assisted each other before.
• Effective communication in a time of crisis is vitally important. Our role should be to assist in this process.
• It is important to remember that families will find their own solutions in their own time. We cannot ‘force’ our beliefs, solutions or desires on to the family. We need to facilitate discussion and support their decisions.
• A critical role is acting as a mediator and assisting the family to understand each other’s feelings and concerns and assist them in finding their own way forward.
• Starting the discussion is difficult and it is important that we avoid ‘lecturing’ (e.g. hiding behind our knowledge and giving fact after fact). The family will have lots of questions so rather listen first and talk later.
• It is important to walk beside the family providing support at a difficult time.
• Try and avoid giving concrete advice. Families will often ask what we would do. It is important to refer back to them – “I’m not sure. What do you think? What do you want to happen?”

A critical role when supporting families is to act as a mediator and to assist them to find their own way forward.

6-26 Why is it important to give a family choices and control?

This is a time where the family and the child have little control over what happens and little choice. Giving them choice and control in an uncontrollable situation empowers them and assists them in making good decisions for themselves. A family can be helped by the following:

• Try to do everything you can to give the child and the family choice and control.
• Talk through in detail what might happen (best and worst case).
• For each scenario, explain and agree on exactly what the plan is.
• Try to involve them in any plans so that they do not become passive and fearful.

It is important to give families choice and control to help them make good decisions.

The need to support the siblings

6-27 Why do we need to support siblings?

There are a number of reasons why siblings need support:

• Siblings of sick and dying children are often ‘forgotten’ and therefore face emotional difficulties during this time as the family throws all its time, energy and resources into the sick child. Fear stemming from misunderstandings (misconceptions) could lead the siblings into believing that they too may have this illness or could get it and this causes great anxiety. It is important that we assist the family in discussing these misunderstandings.
• Siblings may also feel responsible for their sibling’s illness. Often in anger siblings say things to each other like ‘I wish you were never born’. This sometimes comes back to haunt the well sibling as they feel they brought this on. This ‘magical thinking’ needs to be addressed.
• Siblings of sick and dying children may exhibit signs of irritability, anxiety, social withdrawal and start underachieving academically. These are psychological reactions to the situation, and they need to be supported through this. It is important that they know that these feelings are acceptable and that they have a right to feel them.

It is important not to forget the siblings, as they also need support and understanding.

6-28 How can we help parents support siblings?

It is important that we help parents recognise the struggles that the well siblings are going through and assist them in bringing some form of ‘normality’ back to their lives.

We need to encourage them to treat children equally, at the same time considering the special needs of the dying child. Parents need to spend time alone with the well siblings and when they are in hospital with the sick child they need to keep in contact with the siblings.

Principles of relating with the child and the family

6-29 How do you develop a helping relationship with your patient and their family members?

Felix Biestiek, a Jesuit priest and social work professor, developed seven principles for developing a helping relationship in 1961. These are:

• Individualisation: This is the recognition that each patient and their family are unique individuals. Therefore, they need to be treated as such, and not just as a typical member of a category or group.
• Purposeful expression of feelings: This is the recognition of the patient and family’s need to express all feelings. Our responsibility is to listen purposefully without personal bias. To deny a patient or family the opportunity to express feelings is a refusal to deal with the total person.
• Controlled emotional involvement: This refers to our sensitivity to the patient and the family’s feelings. It is an understanding of meaning and a purposeful, appropriate verbal or non-verbal response. We are ‘involved’ emotionally and we need to respond to feelings with controlled, appropriate emotions.
• Acceptance: This perceives and deals with the patient and the family as they really are. This includes their strengths and weaknesses, their positive and negative feelings, their constructive and destructive attitudes and behaviours. Throughout this we maintain and communicate a sense of dignity and personal worth. This does not mean approval.
• Non-judgemental attitude: This is based on the belief that social work does not include assigning guilt or innocence. If the patient or family fears blame and judgement, they will not talk about themselves.
• Client self-determination: This refers to the recognition of the right and the need of the patient and their family to have freedom in making their own choices and decisions. It is not our responsibility to persuade, manipulate or control the patient or family to make decisions to conform to our preferences.
• Confidentiality: This is ensuring that you do not disclose information concerning the patient and their family, which is told to you by them, or is received from other sources. It is essential that if information is disclosed that needs to be shared with the treating team or you are legally obliged to disclose, you inform the patient and/or family of this before doing so.

Case study 1

Yasmin is a 6-year-old girl with cancer. She has a gastrostomy tube and is receiving palliative care at home with the support of regional hospital staff and a local children’s palliative care NGO. Family members include her mother and father, an 11-year-old older sister, Samira, and a 5-month-old brother, Viraj. Her father is an electrician who works night shifts at a local factory and her mother stays at home and is still breastfeeding the baby. She does not drive so uses public transport or relies on her husband to transport her and Yasmin to hospital appointments during the day. The family is part of a supportive community but, apart from her father’s unmarried younger brother, Dev, their extended family members live in a different province.

1. Does Yasmin need psychosocial support?

Yes, as Yasmin has a life-limiting illness and is receiving palliative care, she will have many psychosocial needs. It is possible that these needs are met by her family members, however, it is the task of the care team to determine what these are, which ones (if any) are not being met and how they can meet them.

2. As a 6-year-old, what psychosocial needs would we need to evaluate and help Yasmin with?

Yasmin would have a strong need to be independent. It would be important to find ways for her to gain a sense of independence or control because for most things she will be dependent on adults and have little control over what happens to her. She would also need to play and to socialise with other children, which could prove difficult. It would be necessary to evaluate Yasmin’s thoughts about her illness and ensure she does not have misconceptions as a result of ‘magical thinking’.

3. Why would it be helpful to use a genogram to assess this family?

Through the asking of probing questions a genogram will help you understand who is in Yasmin’s family and the quality of the relationships they have with one another. It would alert the team to psychosocial issues that need to be addressed, the socioeconomic status of the family, a history of any previous losses and possible sources of emotional and financial support.

4. What problems do you think this family could be facing at present?

It is possible that the family are anxious and fearful of what the future holds for Yasmin and for them. Yasmin’s parents may feel helpless and guilty for not being able to protect their daughter from the illness and they could be experiencing some anticipatory grief. The family may be experiencing financial strain as a result of Yasmin’s illness. They may not be communicating with honesty with Yasmin about her illness which could result in a ‘conspiracy of silence’ where they are protecting her and she is protecting them from the truth. The older sister would also have psychosocial issues that are going unmet. The mother’s distress could also affect her relationship with her baby.

5. How could you support this family?

It would be important to hold regular family meetings to find out how each member is coping. Learn where their greatest psychosocial needs lie through questions and allowing individuals the opportunity to express their concerns. Listen deeply to what you are told and act as a mediator where communication problems exist. Refrain from giving concrete advice, instead help the family to find their own solutions. Let the family know that you will be willing and available to support them.

Case study 2

Yasmin is desperate to start grade 1 along with her friends from pre-school and cried inconsolably when she saw her friend in her new school uniform. Yasmin’s mother wants her to go to school as well but is not sure how this can be achieved, given her diagnosis and medical needs. She cannot accompany Yasmin because of the baby at home and the family don’t have sufficient funds to pay for someone else to go to school with Yasmin. Yasmin’s older sister Samira attends the same school. She is very close and protective towards her sister and has promised to ‘look after her’ during break times.

1. Why is it important for Yasmin to have opportunities to play?

Play can provide Yasmin with a way to express her fears and release any anxieties she may have as a result of her illness. It will also allow her to be distracted from the realities of her illness.

2. How could the team help Yasmin to have time to play and socialise with her friends?

The team could talk to Yasmin’s parents about the importance of playing and encourage them to make time in her daily routine to just play and to socialise with her friends. Speak to Yasmin about which toys or games she prefers to play with and make these available to her. Make sure that her toys are kept clean, that they are safe and unbroken and that different toys are offered to her each day to keep her engaged.

3. Would it be possible for Yasmin to attend school?

Yes, it is possible, but this could only be achieved through close cooperation and collaboration between the school, the teachers involved, the care team and the family. It would be necessary to assess the risks of Yasmin’s school attendance and to manage these as well as possible.

4. How could the team help the school accommodate Yasmin’s desire to attend school?

It would be important to include Yasmin’s teacher as an integral member of the care team. Arrange a visit by a team member to the school to explain Yasmin’s condition and to ease concerns that teachers and students may have. Infection control will be a concern and the school would need advice on how best to manage this. It may be possible for a team member to talk to the teachers and the children in Yasmin’s class about her illness and what may happen as it progresses.

5. What psychosocial needs may Yasmin’s older sister have?

As an 11-year-old Samira will find peer approval very important. She needs opportunities to develop her self-confidence by finding out where her talents and strengths lie. She may ask deep questions about her sister’s health and could worry that she may also get sick. She also needs time to play and to socialise with her own friends.

6. What support could we encourage Samira’s parents to give her?

Through honest communication Samira should be encouraged to express her feelings and her thoughts. Her parents can be encouraged to find a way to make her life as normal as possible and to treat her as fairly as possible despite the more demanding needs of her sister. It would be important to find ways for her to spend time alone with her parents and to ensure that they keep in contact with her should they need to be away from home.