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Caring for young children of palliative patients

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Caring for young children of palliative patients

In palliative care, we not only provide care and comfort to patients, but give support to patients’ families too, not forgetting the young children.

Alice (name has been changed) is in her 40s and has been diagnosed with breast cancer. She is under the care of Assisi Hospice’s Home Care service. Her youngest daughter, Brenda (name has been changed) is six years old. Alice and her husband did not speak to their daughter about her condition as they felt that she was too young to understand. However, Assisi Hospice’s medical social worker Ms Ooi Yinn Shan noticed that Brenda was in distress.

She said, “When our Home Care nurse and I visited the family, Brenda came to us and asked, ‘Is she in pain? Is she dying?’ I also noticed her tearing.”

Alice’s husband was initially reluctant for Yinn Shan to reach out to Brenda. He thought his daughter was too young to experience any distress or grief. After highlighting the impact of psycho-emotional pain on Brenda, Yinn Shan convinced Alice’s husband to allow her to reach out to Brenda. Yinn Shan started play therapy with Brenda, using selected play materials like balls and dolls. This facilitated the development of a safe relationship for Brenda to fully express and explore her feelings, thoughts, experiences and behaviour through play.

Yinn Shan shared, “All children need help and support to manage strong emotions, especially children dealing with challenges like a family member who is sick, a death in the family or other traumatic events. Children develop their ability to identify and name emotions through plenty of practice. Recognising and naming emotions help children understand their feelings and lay the groundwork for managing emotions. It is easier for children to practise through play when they are relaxed before their emotions get too intense.”

Throughout the four sessions with Brenda, Yinn Shan found that Brenda was interested in art and referred Brenda to Assisi Hospice’s art therapist, Ms Vivian Wong, for further intervention. Vivian facilitated a session where Alice and Brenda worked on an artwork together. Brenda chose to paint a box in her favourite colour — pink — and decorated it with gems and beads. Alice showed her love for her daughter by working alongside and using similar materials, finally adding a sticker with the word “Sweetheart”. Alice shared that she was glad for the session as it had been a long time since she shared a fun activity with Brenda.

Pink box with gems and beads made by Alice and Brenda

The process of creating art together provided space for Alice to preserve her role as a doting mother to Brenda and allowed Brenda to receive a gift and the attention she needed. Brenda’s father was more receptive to art therapy sessions for her after observing the process and exchanges that took place. This paved the way for further assessment of needs and formulation of appropriate interventions to support Brenda.

Insight from a medical social worker and art therapist

Yinn Shan and Vivian share their experiences and challenges working with young children of palliative patients.

What are the common challenges when working with young children of patients?

Yinn Shan: Most people assume that young children are too young to know what is happening, so adults tend to assume that avoiding the topic is beneficial for the child. However, children are observant and can see and sense the changes around them. For young children, losing their parents is painful, and early engagement can allow them to process their emotions and have a good closure.

Vivian: Children’s grief may be under- addressed as adults around them base their assessment of how the children are coping on what they observe instead of trying to understand how they truly feel. Parents may send the children away to a friend or relative’s house to “protect” them from seeing their loved one being critically ill or dying. Children who are losing someone who is their attachment figure may experience anxiety at the prospect of losing their sense of security and safety.

What are the common issues that these children may face?

Yinn Shan: They may face adjustment difficulty with changes in their daily routine, family environment, and grieving family members. Preschool children understand the concept of death and will experience loss, abandonment, and insecurity if a significant person is missing. They may also have issues processing grief and other emotions as they struggle to express their feelings in words.

Vivian: As young children do not respond to grief the same way adults do, or lack the emotional language to articulate how they truly feel, adults often can’t understand the impact of serious illness or death of a loved one on them. Younger children who do not understand the concept of illness and death may see these events as reversible or believe that they are a result of their negative thoughts or behaviour. Therapeutic interventions should cater to the child’s needs based on factors such as developmental age, maturity, attachment to the patient and relationship with surviving caregivers.

How does counselling and art therapy help?

Yinn Shan: Play therapy is one of the more effective counselling methodologies for engaging young children. It provides a psychological buffer between children and their problems, so that they feel safe. Play provides children with an outlet for self-expression, increasing knowledge of self and relieving stress by establishing successful strategies for addressing concerns and coping.

Vivian: Art therapy helps a child to articulate aspects of experiences or difficulties that need attention. Sensory materials such as clay is a versatile medium which allows for different complex feelings to be expressed in a safe way, facilitating the discharge of energy and pent-up emotions through movements such as pounding, squeezing, pinching and ripping, but also has a calming effect when the art process involves rolling, moulding and smoothening. Creating a piece of tangible artwork together brings loved ones together and strengthens connections between them.

Photo: Assisi Hospice, FREEPIK

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