Research into JHD services – have your say
Dr Oliver Quarrell, a doctor from Sheffield Children’s NHS Foundation Trust, is looking for patients and families living with Juvenile Huntington’s disease (JHD), to give their views on two new potential service models.
The service models are a culmination of research in to the effectiveness of services for young people with JHD, also known as JOHD (Juvenile Onset Huntington’s disease).
The research, which included interviews with families, found that there was potential to improve the support provided to young people with JHD and their family carers. Many families that were interviewed said their experiences of formal support services were not very good, leading to a negative impact on the families.
Dr Quarrell said:
“This study aimed to find out the views of patients, carers and professionals on the services available. What do young people need? What do they value? Are there better ways of delivering services and providing care? We believe the information we’ve gathered has the potential to support future improvements.”
Based on their research findings, Dr Quarrell and his team have put together two new potential support models and would like your views on the two options.
Have your say
Please take a look at the videos below and add your answers to the form via the link below.
Option 1
Option 2
Please fill in your answers on the form here.
We’ve worked closely with Dr Quarrell and his team on the research project, which has been funded by the National Institute for Health Research (NIHR).
Dr Oliver Quarrell, a doctor from Sheffield Children’s NHS Foundation Trust, is looking for patients and families living with Juvenile Huntington’s disease (JHD), to give their views on two new potential service models.
The service models are a culmination of research in to the effectiveness of services for young people with JHD, also known as JOHD (Juvenile Onset Huntington’s disease).
The research, which included interviews with families, found that there was potential to improve the support provided to young people with JHD and their family carers. Many families that were interviewed said their experiences of formal support services were not very good, leading to a negative impact on the families.
Dr Quarrell said:
“This study aimed to find out the views of patients, carers and professionals on the services available. What do young people need? What do they value? Are there better ways of delivering services and providing care? We believe the information we’ve gathered has the potential to support future improvements.”
Based on their research findings, Dr Quarrell and his team have put together two new potential support models and would like your views on the two options.
Have your say
Please take a look at the videos below and add your answers to the form via the link below.
Option 1
Option 2
Please fill in your answers on the form here.
We’ve worked closely with Dr Quarrell and his team on the research project, which has been funded by the National Institute for Health Research (NIHR).