The ARC’s Children’s Palliative care Outcome Scale (C-POS) research project aims to develop a set of outcome measures specifically for children, young people and their families affected by life-limiting and life-threatening conditions. Based in the ARC's palliative and end of life care theme, the study team work alongside three bereaved parents on the C-POS steering group. They are central to ensuring that parents’ voices are integrated into decisions at all stages of the study.

This year, July 3rd marked National Bereaved Parents Day, which aims to raise awareness, show bereaved parents they are not alone, and remember all of the children gone too soon. To recognise this, we asked our patient and public involvement (PPI) members about their experiences of joining the C-POS study, and what being a part of research meant to them.

Jane, C-POS project PPI member

I joined the C-POS study as a PPI member, being a healthcare professional and a bereaved mother with over 8 years’ experience as a children’s hospice service user. Whilst mostly positive, I strongly believed that the events I have both lived and observed would be best served not by putting them to the back of my mind, but by sharing with those who are seeking to alleviate the emotional upheaval that a child and their family will transverse as part of the palliative care journey.

This motivation is not all selfless; being able to assist with C-POS means that I am able to make the death of my son Callum mean something, by letting others know (in Spaghetti Western terms!), The Good, The Bad, and The Ugly.

The people who underpin the C-POS research study are dedicated, knowledgeable and empathic, so discussing emotional, personal events isn’t the painful event it could be

Jane, C-POS project PPI member

Their acknowledgement that the child and family are an equal part of palliative care education, planning and delivery – feeding the information they glean from that involvement into future provision gives comfort and the feeling that in the future, a painful yet unavoidable event for some, might be just a little less painful. I strongly believe that Callum had a ‘good’ death, and that as a family, it was the best it could be – and I would love to see that for anyone else that has to follow this path.

Lydia, C-POS project PPI member

I first heard about C-POS and the plans to overhaul end of life care for children whilst I was part of the Royal Marsden’s meeting group to discuss paediatric palliative care. My son Fabian was diagnosed with Acute Lymphoblastic Leukaemia (ALL) in 2006. After standard treatment and two bone marrow transplants (the latter on the CarT cell gene therapy trial), we lost him in November 2014. We had been told in February that year that we needed to go home and enjoy what time we had left together. Fabian was 12.

I joined the Marsden group because I was interested to see if parent input could bring positive developments to help the team deliver support and care at this devastating time.

It is much more difficult to accept that your child will not get better and you will have to say goodbye, than to hear the original diagnosis. Therefore, most families don’t believe it and carry on hoping - because without hope comes despair, and you can’t get through this without hope.

Fabian’s brother once asked the end-of-life care nurse, Maggie, if she had ever seen any miracles. “Only small ones,” Maggie replied.

In a similar way to why I joined the Marsden group, I joined C-POS group in the hope that as parents we may be able to convey insight into how we could help ease the circumstances and support the plight of families. The researchers have done a great job and it has been a very positive experience being a part of the group. I hadn’t expected it to stir up memories as much as it did, but I knew we would need to be brave. Reading some of the stories and replies children gave about wanting to plan for the future was especially moving. It confirmed the need to maintain normality and to not lose hope.

We all hope for ways we can minimise emotional and physical suffering for the child and their family and find ways that support the individuality of each family, considering all aspects - emotional, physical, social and spiritual

Lydia, C-POS project PPI member

Though it can be a bit daunting working together with such distinguished medical professionals, as parent participants we have felt valued and are grateful that our experiences have contributed positively. It is a privilege to be a part of the C-POS team.

Angela, C-POS project PPI member

The Daniella Logun Foundation (DLF) provides emotional, practical and spiritual wellbeing support to children diagnosed with cancer and their families/primary carers within Hillingdon and the surrounding areas. Born out of the sad loss of our daughter Daniella Logun, we are active in providing a service that enables families to have a positive palliative care journey and an improved experience for children sadly at end-of-life.

As members of Together for Short Lives, we are grateful for the opportunity to contribute to the development of the C-POS research project as well as ongoing discussions into improving the care-quality standards for children receiving palliative care for life-limiting or life-threatening conditions.

Through PPI, we can provide ongoing patient-insight based on our lived experience caring for our daughter Dannie and support the development of a tool measuring symptoms and concerns of children with life-limiting and life-threatening conditions.

This brilliant piece of research aims to capture outcomes across the full dimensions of care - physical, psycho-social, social/practical and spiritual/existential outcomes because ideal children and young people (CYP) patient-reported outcomes measures do not currently exist.

This innovative research also:  

  • Focuses on the measurement of the holistic wellbeing priorities of the children and young people (0-17yrs) and their families during the child's care
  • Enables these families to prioritise and express their outcomes of care with their healthcare professionals
  • Enables the clinicians to conduct more through assessment and monitoring   
  • Ensures commissioning of services remains patient-centred and CYP outcomes-based

We believe in the significant contribution that PPI brings to the innovation of the children's palliative care service.  Our lived experience of palliative care whilst caring for Dannie, lends us firsthand insight into the current gaps within this service; and sharing Dannie's story offers our unique perspective on the importance of wellbeing outcomes to a child and their family during the child's care - outcomes which may be ordinarily difficult for the family to express during care. 

We are proud to contribute our quota to ongoing research and service improvement in this area and keen to offer what we have learned from Dannie's story, and the direct accounts of our service user families, to help improve future research and the quality of care within children's palliative care

Angela, C-POS project PPI member and founder of Daniella Logun Foundation

Find out more

C-POS is funded by the European Research Council’s Horizon 2020 programme [Grant ID: 772635] and supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) South London at King’s College Hospital NHS Foundation Trust.

The aim of C-POS is to develop and validate a person-centred outcome measure for children, young people and their families affected by life-limiting and life-threatening conditions. To find out more about C-POS and follow the progress of the study, you can follow on Twitter @CYP_CSI or visit the website www.kcl.ac.uk/research/c-pos

This blog was written as part of activities funded by the UKRI Participatory Research Fund.