7 Cultural understanding and spiritual care
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- Assessing culture
- Spirituality and spiritual care
- Assessing spirituality
- Planning and providing spiritual care for children
- Case studies
When you have completed this chapter you should be able to:
- Understand the meaning and importance of culture.
- Understand the importance of cultural competence.
- Understand the difference between spirituality and religion.
- Describe ways that children may express their spirituality.
- Assess spiritual care.
- Plan a programme of spiritual care for children.
7-1 What is culture?
Culture may be defined as those shared beliefs, values, customs, practices and patterns of social behaviour, and understanding of important life issues that define a particular group or community. A shared culture may also include common language, religion, dress, art and music. We are born into a culture but may have experiences of many other different cultures throughout childhood and adolescence.
Culture is the shared beliefs and patterns of behaviour and understanding of a particular group of people.
- There is also what is known as a ‘culture of childhood’ that is linked to and interacts with but is separate from that of the adult. As children grow, they will gradually leave this and enter the culture of adulthood.
7-2 Is culture important to children?
Yes. Children are body, mind and spirit within cultural groups. The group culture may influence the way they understand their illness, express themselves and make decisions.
7-3 How does culture shape and influence a child’s beliefs?
Culture shapes life experiences and these in turn influence childhood development and how children respond to their illness. The individual beliefs during childhood and adolescence are shaped by their own culture.
Culture shapes childhood development and how children respond to their illness.
7-4 How can culture influence how illness is experienced?
Cultural norms may prevent open discussion between sick children and their parents, for example, a ‘culture of silence’ may prevail. The child’s life may have a different symbolic value in different cultures. Expressions of pain and suffering, and acceptance of medications and treatments may differ from those found acceptable by the healthcare provider. Some cultural influences may prevent the expression of pain and suffering.
7-5 Can culture influence grief and death?
Cultural and religious beliefs may affect the way the family wishes to care for the body after death and influence the family’s expression of grief; these may include belief in life after death, in fate (an outside force determines what happens to you) or karma (your previous actions determine what happens to you).
7-6 What do we mean by cultural sensitivity?
Healthcare workers must be respectful and sensitive to the influence of culture on the response of the child and family to illness, death and bereavement.
To be culturally sensitive is to be respectful and aware of the influence of different cultural norms and beliefs.
7-7 What is cultural competence?
Different cultures may require different responses. In order to be able to respond to the culture of childhood and adolescence with understanding of their language (e.g. play, non-verbal behaviour), means of communication (e.g. social media); beliefs (e.g. imaginary friends) and their understanding of their role in the family it is essential to respect, accept and learn the important values, norms and beliefs in the child’s culture.
Cultural competence is the respect and acceptance of differences in values, norms and beliefs of other peoples’ culture.
7-8 Why do we need cultural sensitivity and cultural competence?
In palliative care we interact with people of many different cultures and therefore we require cultural sensitivity and cultural competence to interact effectively and understand their different values and beliefs. There is also a culture of both childhood and adolescence which may influence the way patients of different ages understand, communicate and react to their illness. Cultural competence and cultural sensitivity includes respect for each culture and an awareness of actual and potential cultural factors that may influence interactions, decisions and expressions.
In order to interact with people it is important to understand different cultures and accept that children and adolescents may have their own culture and beliefs.
7-9 Are there any misunderstandings about culture and religion?
Yes, misunderstandings (misconceptions) occur when healthcare providers assume that a patient or family’s culture will determine their religious beliefs or how they practice their religion. For example, not all Indian people are Hindus or Muslims and not all Buddhists are Asian. Many Hindus, Muslims and Buddhists live in Western countries.
7-10 Is there a framework that can be used to address culturally sensitive issues?
Yes, use a framework that includes the following three areas:
- Beliefs and values
- Daily practices
- Community involvement.
These are helpful for communicating and exploring information about the child and family’s culture, religion or spirituality.
7-11 How would you assess the family’s culture and beliefs?
An assessment can be done by asking questions of the family and the child such as:
- What is your home language?
- What nationality, tribe or cultural group do you feel you belong to?
- Are there any cultural rituals that would be important for you during the child’s illness?
- Are there any cultural rituals you would like to be followed when your child is dying and when your child dies? (This does not have to be asked immediately.)
- What should we not do or say?
- How should we handle the body when the child is dying or has died?
- What funeral rituals are important to you?
7-12 How would you provide culturally sensitive care to a child and the family?
The basis of cultural care is respect and acceptance when there are cultural differences. With older children, their cultural identity and care may also be related to their gender experience, such as being transgender, or their sexual orientation, such as being gay. If you are unsure, ask the family members about their cultural group and read up on their culture if you do not know about it. It is important to support cultural practices that are not harmful. However, ensure the child is protected if a cultural ritual or belief appears to be harmful.
7-13 How do you manage harmful cultural practices?
Certain cultural practices may seem potentially harmful e.g. some traditional medicine practices. Culturally sensitive and open discussion with the parents or guardians may be challenging, but must be initiated. Lawfully the safety and best interest of the child overrules traditional practices and this responsibility may not be ignored. There is also a legal duty to report harmful cultural practices.
Healthcare workers have a duty to prevent or report cultural practices that may harm a child patient.
7-14 What is the aim of traditional African beliefs?
The aim of traditional African beliefs is to restore wholeness and peace between the sick child, God, the ancestors and the living. It includes the family, the community and its basic beliefs and values.
7-15 Can traditional African beliefs influence understanding and treatment of an illness?
Yes, traditional African cultural and religious beliefs can influence the understanding of illness and the response to recommended treatment and decisions taken by the child and family. Many believe that the ancestors play an important role in both the cause and healing of disease.
Traditional African beliefs can influence the understanding and treatment of an illness.
Spirituality and spiritual care
7-16 What is spirituality?
Spirituality involves the way people express meaning and purpose in their lives:
- Spirituality is central to holistic family-centred healthcare.
- It is about meaning, the purpose of life and connection with the world around us and something greater than ourselves.
- It involves the use of symbols, rituals, art, music traditions and reflections to help children incorporate illness into their life experience.
- It allows them to explore further questions and brings them into new relationships with others.
- It also provides opportunities for children to experience those parts of their lives that go beyond sickness or suffering.
Spirituality is about meaning, purpose and connectedness with the world around us, and the significant or sacred.
7-17 What is religion?
Religion is an organised set of beliefs, practices and stories belonging to a specific group of people. There is a difference between spirituality and religion although a child may express their spirituality through religious actions.
Religion is an organised set of beliefs, practices and stories belonging to a specific group of people.
7-18 Why do we need to include spiritual care as part of palliative care for children?
The World Health Organization (WHO), in their definition of palliative care for children, includes care of the spirit as an essential element alongside care of the body and mind. Spiritual care provides opportunities for children to discover new strength through prayer, mindfulness (awareness) and meditation to cope with the difficulties of serious illness.
7-19 How can we understand spiritual care?
Spiritual care of children is based on respect for the uniqueness of each child, accepting their beliefs, values and forms of spiritual expression without judgement and responding in ways they can understand. It is important to understand the following:
- There are stages in spiritual development in children and each stage has different characteristics and may require a different care response.
- Children may superficially appear to hold the same spiritual beliefs as their parents, but each child’s spirituality and belief system is unique.
- Children are often more comfortable with spiritual issues than adults.
- Children often find it easier than adults to believe in a higher being.
- Family members, including siblings and grandparents, feel spiritual pain and should be assessed for spiritual support.
Children are spiritual beings and spirituality is an integral part of each child.
7-20 What spiritual concerns may children have?
Although understood differently at various developmental stages and expressed differently in many cultural and religious ways, the spiritual needs of children are universal. Some of the common spiritual concerns children may have include:
- The lack of unconditional love
- Lack of forgiveness
- Being given no hope
- No safety and security being provided by their loved ones
- Importance of knowing that their lives have made a difference
- Loneliness and separation
- Loss of wholeness and the ability to do what they want to do.
7-21 Do children experience spiritual suffering?
Yes. Children experience spiritual suffering or pain that may be displayed as behaviour change such as withdrawal, anger, fear, questioning and ‘magical thinking’. Religious beliefs, rituals and support may assist the child to cope with their suffering or to find meaning in their suffering.
Children experience spiritual pain and suffering that must be addressed.
7-22 What questions in older children may indicate spiritual suffering?
Older children may ask existential questions such as:
- Why is this happening to me?
- What is the purpose or meaning of my life?
- Why do I have to suffer or die?
7-23 What is a spiritual assessment of a child?
Spirituality is expressed in a unique way by each child. A spiritual assessment is developmentally defined and involves an understanding of the child’s approaches to understanding life. A spiritual assessment focuses on:
- Understanding the meaning and purpose of the child’s life to the child and the family
- Understanding the things that are important to the individual child
- The child’s hopes and dreams for the future, whether realistic or not
- Transcendent relationships (relationships with a higher being)
- The role of prayer and rituals
- Their beliefs regarding death.
A spiritual assessment involves exploring what has meaning and purpose in a child’s life.
7-24 What is important when conducting a spiritual assessment with a child?
A spiritual assessment may need to be done over time. The best spiritual assessments are those that allow the child to tell their stories, either verbally or through art, music and play.
To conduct a spiritual assessment, it is important to:
- Create a safe environment where they feel free to ask questions and express themselves:
- This may be called a ‘sacred space’ which can be anywhere the child feels safe to express their spiritual concerns
- Prompts such as ‘Tell me about a time you were brave’ or ‘Tell me more about what you think heaven looks like’ invite the child to tell more about what is important to him or her and invite the caretaker into the conversation.
- Build a relationship of trust so that they feel safe expressing their feelings and asking and answering spiritual questions.
7-25 Are there any assessment tools that can be used to assess spirituality and religion?
Yes, an assessment tool called B-E-L-I-E-F is a helpful tool to initiate a discussion with the child and family about their religious and spiritual beliefs.
7-26 What are the components that make up the B-E-L-I-E-F tool?
The components are the following:
- B - Belief system – ‘What religion or spiritual beliefs, if any, do members of your family have?’
- E - Ethics (values) – ‘What standards or values for life does your family think are important?’
- L - Lifestyle – ‘What spiritual habits or activities does your family commit to because of spiritual beliefs e.g. any sacred times you keep or any special diet you may follow?’
- I - Involvement with a spiritual community – ‘How connected to a faith community are you? Would you like us to make contact with them?’
- E - Education – ‘Are you receiving any form of religious education e.g. do you go to Sunday school?’
- F - Future events – ‘Are there any important religious ceremonies for which to prepare your child or that you are getting ready for e.g. a baptism or confirmation?’
7-27 How can you assess spirituality in younger, non-verbal or developmentally delayed children?
For younger children, non-verbal children or developmentally delayed children with serious illnesses there are at present no universally validated tools. Assessment of the young child is based on observing and listening to their answers to questions. These may include finding out the following:
- What and who is important in the life of this child and makes them content or happy?
- Are they self-aware? Can they tell you about themselves? For example, use a mirror with a small child and watch their reaction.
- How do they interact with others? Do they respond with pleasure, play, participate or withdraw?
- How do they respond to nature such as animals, flowers, trees, sand, sea, water and wind?
- Are they aware of something or someone greater than themselves? (This may be impossible to assess in non-verbal and small children.)
- Certain words they use may guide you for example:
- I’m going on a journey
- What does it mean to die?
Young, non-verbal or developmentally delayed children may be assessed by observation and listening to their answers to specific questions.
7-28 How can you assess spirituality in an older child or adolescent?
Using a validated spiritual tool like FICA can assist in assessing older children’s and adolescent’s spirituality.
7-29 What does FICA stand for?
FICA stands for:
- F – Faith (belief)
- ‘Do you consider yourself spiritual or religious?’ or ‘Is spirituality something important to you?’ or ‘Do you have spiritual beliefs that help you cope with stress and difficult times?’
- If the patient responds ‘No,’ the healthcare provider might ask, ‘What gives your life meaning?’ Sometimes patients respond with answers such as family, career or nature.
- The question of meaning should also be asked, even if people answer yes to spirituality.
- I – Importance
- ‘What importance does your spirituality have in your life? Has your spirituality influenced how you take care of yourself and your health? Does your spirituality influence you in your healthcare decision making?’ (e.g. advance directives and treatment)
- C – Community
- ‘Are you part of a spiritual community?’ Communities such as churches, temples, and mosques, or a group of like-minded friends, family, or yoga class can serve as strong support systems for some patients. You can explore further and ask ‘Is this of support to you and how? Is there a group of people you really love or who are important to you?’
- A – Address in care
- ‘How would you like me, your healthcare provider, to address these spiritual issues in your healthcare?’
- Newer models of FICA include diagnosis of spiritual distress. Therefore A also refers to the ‘Assessment and Plan’ of a patient’s spiritual distress or issues within a treatment or care plan.
Spiritual assessment of older children and adolescents may be done using the validated FICA tool.
Planning and providing spiritual care for children
7-30 What should be considered when planning spiritual care?
The following needs to be considered:
- Where you feel you can respond to their comments or questions, do so with gentleness and honesty.
- Make use of specially trained spiritual care professionals when their spiritual needs are more complex.
- Ensure that the care team has access to a chaplain or spiritual care professional.
- The child’s own religious leader, where relevant, would ideally be involved in planning spiritual care for the child and family.
- Ensure each team member receives basic training in spiritual assessment and care.
- Encourage activities that ensure they feel connected to others and to nature.
- Where relevant encourage religious rituals the child finds comforting, such as singing or praying.
7-31 How can we provide spiritual care for children who have the ability to understand and communicate?
To provide spiritual care to a child who can understand and communicate you would:
- Create a safe environment for them to express themselves. This may be termed a ‘sacred space’.
- Listen deeply with all your senses:
- Listen to their words such as ‘sad’, ‘lonely’, ‘afraid’ or ‘guilty’, and explore why they use these words
- Listen to and explore their use of searching phrases like ‘why me?’ or ‘If only I could…’
- Listen to and explore the meaning beneath words such as ‘going on a journey’, ‘going home’ or ‘I wish for…’
- Listen to their dreams and what they mean to the child
- Never assume you know what they mean, ask the child.
- You may need to use questions to prompt them to express themselves such as:
- Who or what helps you when you feel afraid or uncertain?
- What gives you the most pleasure in life?
- What is important to you?
- What do you hope for?
- Can I help you?
- They may express spiritual concerns through words such as:
- Include the child and parents in developing a spiritual care plan.
Allow the child to show you what they need for spiritual care and plan accordingly, involving the child and parents where possible.
7-32 How can we provide spiritual care for non-verbal, very young or disabled children?
To provide spiritual care to a non-verbal, very young or disabled child you should:
- Through observation, assess what makes the child feel happy, comfortable and ensure they receive this.
- Use comforting physical contact like gentle holding or soft massage.
- Communicate through words and music even when they cannot respond.
- Ensure the child is not isolated or left on their own.
- Take the child out into nature and let them interact with animals and the surroundings.
Spiritual care for children who are very young, non-verbal or very disabled consists of a comforting presence and activities that promote connectedness with others and with nature.
7-33 Do children know when they are dying?
Yes. Children often know that they are dying and some may tell you in words but they may be afraid to speak of dying to protect their family. It is therefore essential to respond to the child and not ignore them when they express knowledge of their dying.
7-34 How do children express that they know that they are dying?
Children may show this knowledge through art, stories and child-led activities which may include the following:
- Wanting to visit their favourite places
- Wanting to see and say goodbye to people and animals
- Drawings that show they are going to Heaven
- Drawings or stories of a journey
- Play that includes their dying, death or funeral
- Identifying with a special star in the sky.
Children often know they are dying and the care team must respond to the child’s words, expression or art with empathy and honesty.
7-35 Who should provide spiritual support when the child is dying?
Parents or guardians and members of the care team should be informed that the child is dying and a plan should be drawn up to collectively support the child’s wishes or fears. If professional support is needed to address fears of dying, involve an experienced chaplain, spiritual support person or child psychologist.
Case study 1
Stembile was an orphan and seriously ill with heart failure and HIV in a children’s hospice. He was 3-years-old and had very little vocabulary so expressed himself with his eyes, facial expressions and use of his arms together with the few words he could speak.
Two days before he died, he clearly showed the staff that he wanted to visit his favourite places, named his favourite people and went outside to look up at the stars. He pointed to one and said ‘Stembi’s star’.
1. How did Stembile show he understood he was dying?
Through asking to visit and spend time with his favourite people and places. Wanting to have his name on a star in the sky suggests that he feels he is going to heaven. He wanted to complete tasks important to him.
2. What do you think gave Stembile meaning in his life?
Stembile could identify the people and places that had meaning in his short life. Through his actions he showed that he understood that his life was coming to an end and wanted to reach out to people and places (nature) he loved and name a star (the sacred).
3. What skills would the staff have needed to respond to Stembile’s spiritual needs?
Empathy, understanding of a child’s way of communicating, and being open to accepting the mystery of a young child knowing he was dying and had tasks to complete.
Case study 2
Godfrey was 12-years-old and seriously, but not terminally, ill with respiratory failure. His little friend Stembile had died and he was very sad. A week after Stembile’s death he told the hospice nurse that he knew he would die soon.
That day he drew a picture with the house he loved in his favourite colour red and with two empty swings in the garden. The main picture was full of trees and flowers and in bright colours and there was a warm yellow sun in the sky.
Above everything he drew an aeroplane, a helicopter and a rocket all in grey pencil and small in relation to the other parts of the picture.
1. How did Godfrey express his feelings of loss?
Through his art and use of words. The drawing of empty swings in the garden.
2. How did Godfrey use colour to express what had meaning in his life?
Things he loved were in bright colours.
3. How did Godfrey use a demonstration of a journey to show his awareness of approaching death?
Drawings of different vehicles in pencil (that could be erased) possibly showed his uncertainty.
4. How would you approach Godfrey when he spoke of his approaching death?
- Listen carefully to his words
- Ask him why he said he was dying
- Look for the emotion beneath the words and ask yourself if there is fear or acceptance
- Ask him how he feels and ask how you can help
- Touch and hug him
- Stay with him.
If you feel unable to cope, refer to someone with more expertise such as a spiritual support person or psychologist.
5. How would you approach Godfrey when he showed you the picture he drew?
Don’t make assumptions:
- Ask Godfrey to explain to you the different elements of the picture.
- Discuss the different items he drew.
- Ask about his use of colour.
- Ask how he was feeling when he drew the picture and how it makes him feel to look at the picture now.