CYP Alliance survey: For bereaved families.

Learning from Families: Service Insights Review of Children and Young People’s (CYP) Palliative & End of Life Care in South Yorkshire 

Survey for families who have been bereaved.

The South Yorkshire Children and Young People's Alliance is inviting families to take part in a new project to help us understand what it is like to access palliative and end-of-life care for children and young people across Sheffield, Rotherham, Barnsley and Doncaster.

We understand that taking part in any kind of research following the death of a child can be deeply emotional. We are extremely grateful to bereaved families who feel able to contribute to this important learning project.

Your experiences matter. They help us understand how care felt, what made a difference, and where improvements could better support families in the future.

What is this project about?

The South Yorkshire Children and Young People's Alliance is inviting families to take part in a new project to help us understand how families experienced children and young people's palliative and end-of-life care across Sheffield, Rotherham, Barnsley and Doncaster.

This is not an evaluation of individual services, and it is not a complaints process.
It is an opportunity to help shape the future of palliative and bereavement care by sharing what mattered most to you and your child.

Who can take part?

Bereaved families whose baby, child, or young person died from 2019 onwards and who had palliative or end-of-life care involvement with:

• The Sheffield Specialist Palliative Care Team
• Hospital palliative care teams
• Community nursing teams
• Local palliative lead consultants
• Hospices (where relevant)
   

Please note: Families accessing oncology-only pathways in Sheffield through Paediatric Oncology Outreach Nurse Specialist (POONS) services will not be included in this project, as this pathway sits outside the South Yorkshire Palliative and End of Life Care model. However, oncology families living in Barnsley, Doncaster, or Rotherham will be included, as their local teams may have been directly involved in providing palliative care support.

Any bereavements from 2019 are included so we can understand how changes in the South Yorkshire model may have affected families’ experiences over the past 6 years.

How can I take part?

Complete the Bereaved Families Survey

You will be invited by a local palliative keyworker to complete a sensitive, carefully designed survey asking about:

• Your child’s care, comfort, and symptom management
• How supported your family felt
• Communication and decision-making
• Access to hospital, community, hospice, and care coordination
• Advance Care Planning and ReSPECT
• Bereavement care and follow-up support
• Place of death and whether preferences were met

Families can skip any question or stop at any time. Your participation will not affect any current or future care you receive.

A paper copy is available, please ask your key worker for this or contact: charlotte.clarke36@nhs.net

If you think you are eligible but haven't received information about the survey, please contact charlotte.clarke36@nhs.net

Share your story

As part of this project, we would like to offer families the chance to share their experiences in their own words. This storytelling option sits alongside the main survey and gives you space to tell your story in a way that feels right for you.

We know that numbers and tick boxes can’t always capture what really matters. Your story helps us understand what worked well, what could have been better, and what might need to change for other families in the future. This is not a counselling or therapy service – it’s an opportunity to share your experiences so that we can learn from them.

Your story, your way:
You can choose to share your story in whichever format feels most comfortable:

• Written story: Write about your experience in your own time and words – as much or as little as you wish.
• Creative format: Some families prefer to share a poem, letter, or artwork with a short explanation.
• Audio recording: You may record your story using your phone or another device and send it to us securely.
• Prompt guide: If you’d like a starting point, you can use prompts such as:
  •     Tell us about your child and what mattered most to them.
  •     What was your experience of care like – what helped, what didn’t?
  •     What moments stood out to you (positive or difficult)?
  •     If you could change one thing, what would it be?

Your choice and your safety
Sharing your story is completely voluntary. You are in control of what you share and can stop at any time. If you find that writing or talking about your experience feels overwhelming, please take a break or choose not to continue.

Consent and ownership
Your story belongs to you. If you choose to share it, we will ask for your consent to use it to help improve services and learning across South Yorkshire. You can decide how much or how little of your story can be shared in reports, workshops, or learning events. Nothing identifying will ever be published or shared without your permission.

How stories will be used
Stories will be reviewed alongside survey results to help us understand families’ experiences more deeply. We may include short anonymised quotes in reports or learning sessions to bring your experiences to life, but we will take great care to protect your identity and your child’s.

Thank you for considering sharing your story. Your words can make a real difference in shaping better care for children, young people, and families in the future.

If you would like to participate in the story telling option of this family insight work please contact charlotte.clarke36@nhs.net directly, or get in touch with your local paediatric palliative team who can advocate and support you to do so.