Palliative care strategy - lived experiences and public views: research studies - key findings summary

8. Experiences of children, young people, parents and families

• Palliative care for children was valued most when it was co-led and co-planned with trusted staff; integrated with other children’s services, responsive and flexible; encompassed the whole family; and enabled parents to parent as well as to care for their child throughout their life.
• Misunderstandings around what is meant by ‘palliative care’ and about the illness journeys of babies, children and young people with serious health conditions meant that children and parents missed out on referral for care and support. Barriers included uncertainty about what paediatric specialist palliative care offers, concerns about a new team, association with care around dying, and difficulty knowing when to introduce palliative care.
• Families valued being empowered and supported practically and emotionally but lack of a key professional to help coordinate care could mean families often took on this responsibility. Where teams and services worked well together, people described good support over time and appreciate holistic hospice care.
• Good management of symptoms like pain or seizures meant that children were comfortable and able to take part in childhood activities; maintaining social contacts and getting to school were important but difficulties with eating, drinking, tiredness, and changes in appearance impacted normal life. Parents needed practical support to maintain normality for the family.
• Transitions to adult health and care services for young people and families were multi-dimensional and complicated with educational, social, and developmental impacts as well as additional challenges when young people moved out of home.
• Care planning discussions were emotionally difficult and tended to happen around the time of referral for palliative care. Parents and carers with parental responsibility preferred conversations with staff who focused on life, family values, hopes, fears, goals, and the day to day impact of caring for their child and family. Flexible plans were better than definitive decisions about treatment and care when the child may be dying with opportunities to explore the meaning of potential interventions and outcomes.
• Parents emphasised the importance of involving trusted health and care professionals and incorporating parental expertise to guide future care planning.
• The best place of care for a dying child was influenced by what each environment could offer the family. Parents needed reliable access to 24 hour care when at home.
• Timing of death was still a shock and parents experienced multiple losses in bereavement when their child had been cared for by a large team they knew well.
• Parents reported good bereavement care when early support enabled them to make lasting memories of their child and offered psychological support for the whole family.