Learning from parents’ experiences of palliative care for their child
Research type
Research Study
Full title
What does ‘good’ palliative care look like for children and young people? A qualitative study of parent experiences and perspectives.
IRAS ID
296767
Contact name
Johanna Taylor
Contact email
Sponsor organisation
University of York
Duration of Study in the UK
1 years, 2 months, 30 days
Research summary
Summary of Research
Around 4500 infants and children die in England and Wales every year, and the number of children and young people with conditions that will shorten their life (life-limiting conditions) is rising. In children, more than 300 conditions are life-limiting, including Duchenne muscular dystrophy and cancer.
Palliative care is an important element of the care that these children need, and focuses on improving quality of life for children and their families throughout a child’s life and death. In England, palliative care is mainly provided by NHS and children’s hospice services, but this varies across the country. This means that children, even with similar healthcare needs, may have quite different experiences of palliative care.
In 2016, guidelines for children’s palliative care in England were published to ensure all children receive the care they need, including care provided by doctors with training in children’s palliative care, nursing care that enables children to stay at home at the end of their life and better planning for what happens when they die.
However, there is little evidence about what good experiences of palliative care for children are and how the guideline recommendations may feature in these. This study aims to explore this, by listening to parents’ accounts of the palliative care their child and family receive and examining these accounts to understand what good palliative care is. We hope to include the parents of roughly 30 children and young people (age 0-18) who are either receiving palliative care or who have died.
The study is being carried out by an experienced research team at the University of York, who are working closely with a parent advisory group who will provide input throughout the study.
The study will provide important evidence to inform future policy and service developments in children’s palliative care.Summary of Results
We recruited from organisations in several regions of England to ensure that regional variations in care provision can be explored, and included areas that are diverse in terms of their geography, ethnicity and socio-economic status. All eligible parents were invited to participate.
There were twenty prospective parents who met the inclusion criteria. However, three parents chose not to continue with the study. Therefore, fourteen mothers and three fathers were recruited, representing 16 families. One was a joint interview with a mother and father. The remainder were individual interviews (mothers: n=13; fathers: n=2). Seven were bereaved parents, who were bereaved between 12 and 24 months (median = 19 months).
Parents were recruited via 4 children’s hospices, 1 hospital, and through social media, in England. Nine interviews were conducted via video call (one as a dual interview), and 6 via telephone. Mean interview length was 77 minutes (range: 35-180 mins).
Parents were recruited October 2021 – March 2022.
This study explored how the NICE quality standards featured in parental experiences of palliative care for children and sought to understand their perspectives on what good palliative care looked like. Findings indicated that parents described considerable inequalities in access to, and provision of, palliative care, particularly 24/7 care, which was dependent on age and postcode. We found that parents often rely on charity funding for resources and support. Particularly for those where their child had lived longer than anticipated, parents wanted, but were not able, to focus on being a parent, without the additional struggles of fighting for access, budgets, and resources.
The importance of introducing palliative care to children and their families in a timely and positive manner was stressed. Parents highlighted a need to develop better communication between services to ensure continuity, and to better educate health professionals who were not directly involved in their child’s care, on the meaning of palliative care. It was clear parents believed it is essential that palliative care encompasses the family as a whole, in particular focusing on emotional support for siblings.
Conclusion
There are considerable variations in parents’ experiences of palliative care for their child. Findings demonstrate parents valued integrated, responsive, flexible palliative care, which encompassed the whole family. This has implications for informing evidence-based practice and clinical guidelines for palliative care for children and young people.REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
21/WM/0152
Date of REC Opinion
30 Jun 2021
REC opinion
Favourable Opinion