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Learning modules

Activity 2: The family’s experience of their child’s life-limiting illness

Caring for a child with a life-limiting illness is associated with immense grief, shock, fear, suffering, helplessness and denial[1, 2] It is one of the most difficult situations families/carers may experience.[3] How people respond to the news of a diagnosis or recognition of an illness or condition will be unique to them and healthcare professionals need to be able to support them through this time. Parents may feel a sense of failure at not being able to protect their child from illness, suffering and reduced life-expectancy. When caring for a child who is debilitated for a long period parents may experience chronic sorrow and an increasing burden of care. Even when they have a thorough understanding of their child's illness and prognosis, and have been preparing for the death of their child for a long time, they can still feel numbness, shock and disbelief when the child dies. [1]

Parents can experience a wide range of concerns including:[1, 2, 3]

  • fear, anxiety and stress associated with observing their child’s distress and the loss of their child
  • financial burden associated with medical management, equipment and transport costs, as well as absences from employment
  • a decline in parental physical health due to stress and increased workload associated with medical management responsibilities, relationships and lack of time for themselves.

Siblings of children with life-limiting illnesses can also be affected. The sibling’s experiences can include: [1, 2, 3, 4]

  • increased responsibilities
  • stress from upheaval of family routine and dynamics
  • feelings of anxiety through concern for sibling who is unwell as well as separation from parents
  • feelings of guilt about thoughts they may have towards their sister or brother
  • feelings of embarrassment about being seen in public with their unwell or disabled sibling.

Grief and bereavement

The death of a child is one of the most stressful situations a family can face. For parents, feelings of grief and loss can start well before the child has died. [1, 2, 3] Responses to the death of a child will vary. Some parents and siblings can experience grief that continues long after the death of a child. For many, this is a normal response to a significant loss and the continuing bonds that parents have with their child even after the child’s death.[1, 3] Other individuals can experience a more complicated grief. For some, this complicated grief will require additional professional supports.[5, 6]

Grief and loss is often experienced also by grandparents, friends, community and health professionals involved in the child’s care. Grandparents can experience grief both from the loss of their grandchild and from seeing their own child experience loss.[5]

Thinking points


REFERENCES

1. Therapeutic Guidelines Ltd, Support for families and carers in palliative care. 2019: Melbourne.

2. Palliative Care Australia. Paediatric Palliative Care. 2019  [cited 2019 April 1]; Available from: https://palliativecare.org.au/health-professionals-resources/diagnosis.

3. Therapeutic Guidelines Ltd, Principles of paediatric palliative care. 2019: Melbourne.

4. Newton, A.S., et al., Providing support to siblings of hospitalised children. Journal of Paediatrics and Child Health, 2010. 46(3): p. 72-75.

5. Rosenberg, A.R., et al., Systematic review of psychosocial morbidities among bereaved parents of children with cancer. Pediatric Blood & Cancer, 2012. 58(4): p. 503-512.

6. Therapeutic Guidelines Ltd, Loss, grief and bereavement. 2019: Melbourne.