6 Psychosocial care and support

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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.

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.

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:

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 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:

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:

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

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 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:

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:

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.

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:

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:

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.

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.

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, 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:

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.

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:

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:

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:

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

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

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

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:

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

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:

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:

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:

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:

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.

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