Overview of support for families of a child with a life-limiting illness

Caring for a child with a life-limiting illness is associated with immense grief and suffering, and is one of the most difficult situations families can face. Parents may feel a sense of failure at not being able to protect their child from illness, suffering and death. Those caring for a child who is debilitated for a long period may experience chronic sorrow and an increasing burden of care. Even when parents have a thorough understanding of their child’s condition 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.

Grandparents may be a significant support, but they can also be greatly affected as they experience sadness and grief for both their child and grandchild, and other family members.

Parents of children with a genetic condition often experience anger and guilt, and feel anxious about the risk to their other children. Genetic conditions can also have a significant emotional impact on younger siblings—not only do they face their sister or brother’s illness and deterioration, but they may face the illness themselves in futureMcAllister, 2007.

It can be difficult for parents to share their thoughts and feelings with those around them, or when they do, others may not fully understand or validate their experience. They may feel reassured to know other families have experienced similar difficulties.

Families often have fears and concerns about what will happen as their child’s condition deteriorates and death approaches. While healthcare professionals may feel a sense of failure when a child’s illness is no longer curable, they can help to alleviate the child and family’s suffering and reassure them that support is available.

Healthcare professionals can help families maintain hope. Even parents who appear to accept that their child is dying may privately hold on to the hope that a miracle will occur or that the healthcare professionals have ‘got it wrong’. Despite expectations of a poor outcome, there can be considerable prognostic uncertainty and some children live for longer than expected. It is important to respect and facilitate the family’s hopes by using a ‘hope for the best, prepare for the worst’ approach. As the child’s condition deteriorates, parents’ hopes may change; for example, hope for a cure evolves into hope for a pain-free and dignified death. In the perinatal setting, parents may modify their hopes from having a healthy infant, to having time to spend with the infant or holding a live infantLathrop, 2011Wool, 2013.

Despite the sadness and challenges associated with childhood life-limiting illness, many children and parents strive to live life fully; for example, by attending school, going on holidays together and engaging in hobbies and other activities. There is often a great sense of love and meaning when family life is focused on the care of the affected child and their siblings, and this can provide some counterbalance to witnessing the decline and death of the child.