What are the needs of parents who have a child in in paediatric palliative care?

An article written by Dr Piyumi Senanayake and Dr John Oldroyd, Australian Catholic University

What we set out to do

The goal of paediatric palliative care is to improve the quality of life of children with life-limiting or life-threatening disease and their families through a holistic care approach. A key element of this care are the parents of the sick child. But what are the needs of parents whose children are in palliative care?

What we did

We recently conducted a systematic review to answer this. [1] We searched several library data bases for scientific papers that had tried to answer this question.

What we found

We found that there were 5 main areas of unmet parental needs:

1. The delivery and coordination of the palliative care Parents were frustrated with the lack of continuity of care. Parents wanted themselves and their child to have a greater involvement in the decision-making process. They wanted a gradual introduction to advanced care planning. They also needed adequate time to adjust to the child’s prognosis and more flexibility in the planning process, with the ability to revoke earlier decisions if needed.
2. Emotional, psychological and spiritual support Parents said they had a need for adult mental health services as part of the palliative care plan. They said that informal care and support networks would be helpful. Parents said that they often felt isolated and found it difficult to talk to their friends and family about the struggles of caring for a child in palliative care. Parents particularly wanted emotional support from healthcare providers who they wanted to be sensitive and sympathetic to them.
3. End-Of-Life Care and Bereavement Support As parents faced the devastation of the end of their child’s life, they needed support to prepare for the dying process and having a dignified death for their child. This included guidance on how to talk to their sick child about death, as well as their other, healthy children. Parents raised the need for more options in end-of-life decision-making, in addition to existing practices such as withdrawing treatment or palliative sedation. Many parents said they needed help after death of their child (bereavement).  
4. Practical and Daily Living Support Many parents needed guidance from care providers with daily living activities of their child. The burden of continuous caring for their child meant there was little time to care for themselves resulting in sleep deprivation, fatigue and exhaustion. Parents also requested financial help due to lost income.
5. Communication and Information Parents wanted better communication from diagnosis to bereavement. Parents wished for honest communication from healthcare providers, regardless of the prognosis. Parents said they wanted detailed explanations and accurate information on their child’s condition, prognosis, treatment plans, future treatment options.

What are the implications of this?

There is a need for integrated and flexible care models. Parents’ frustration with lack of continuity of care suggests that current systems are too siloed. This implies a need for integrated care pathways, where multidisciplinary teams work cohesively across admissions.

There is a need for parent mental health and psychosocial support. Parents’ isolation and emotional distress implies that psychological and spiritual support must be embedded in palliative care plans.

There is a need for expanded end-of-life and bereavement services for parents. Parents want guidance on talking about death and exploring all end-of-life options, including controversial ones like active life-ending. This implies ethical frameworks and clear communication protocols are needed. It also suggests that bereavement care should be extended beyond the child’s death, including grief counselling.

There is a need to address caregiver burden and financial strain in parents. Physical exhaustion and financial hardship imply that palliative care must include respite care services for parents and financial counselling to help manage income loss.

Good communication is a fundamental parent need. Parents called for honest, detailed information at all stages. This implies the need for structured communication protocols (e.g. regular family meetings) as well as accessible written information and other resources for educational purposes and advance care planning. More broadly, healthcare providers must communicate empathetically. Peer-support networks to reduce parent’s isolation would be beneficial. Poor quality communication undermines trust in decision-making.

1. Senanayake P, Oldroyd J. The unmet needs of parents in pediatric palliative care: A qualitative systematic review. J Palliat Med. 2025.
    

Authors

Dr Piyumi Senanayake

Physician & completed this systematic review as part of her Master of Public Health

Australian Catholic University, Melbourne

Dr John Oldroyd

Senior Lecturer in Public Health, School of Behavioural and Health Sciences

Australian Catholic University, Melbourne