Excelsia Study V 2.0

• Research type

  Research Study

• Full title

  ‘Exploring the lived experiences of children, young people and their families accessing hospital treatment in the context of a potentially life-changing condition: A qualitative case study of a clinical apheresis community.

• IRAS ID

  254951

• Contact name

  Julie Guest

• Contact email

  j.guest2@newcastle.ac.uk

• Sponsor organisation

  Newcastle University

• Duration of Study in the UK

  3 years, 0 months, 4 days

• Research summary

  This study will be undertaken in two Children and Young Peoples Haematology, Oncology and Stem Cell Transplant Primary Treatment centres in the North and North West of England. The collection of data will last for a period of 2 years. Children young people and their families, (Parents, carers, siblings and family members) who have had stem cell collection or manipulation procedures (Apheresis procedures)will be invited to be included within this study.
  Complex treatments with cell collection or manipulation are increasingly included within treatment pathways. These treatment options are more complex and invasive with increased hospital admission and potentially increased burden on the family in the role as carers when at home. These treatments may lead to increased physical emotional developmental and financial impacts on the child young person and family.

  Little is understood of the emotional and developmental impact of these experiences of invasive treatments; a focus on care may overlook emphasis on life-quality.
  Semi-structured interviews will be used to explore the experiences of children, young people and their families,(Parents, Carers, Siblings).
  Understanding the real world experiences of children and their families, will enable future supportive interventions to be developed. The findings from this study will be shaped by the voices of the children, young people and their families.

  • Increased knowledge of the needs of this specialist group.
  • Improved patient care to minimize the impact of treatment on development.
  • Developing practice guided by insight into the group’s lived experiences.
  • The opportunity for age appropriate intervention development and improvement in this specialist care pathway.

• REC name

  North East - Newcastle & North Tyneside 2 Research Ethics Committee

• REC reference

  19/NE/0058

• Date of REC Opinion

  17 Jul 2019

• REC opinion

  Further Information Favourable Opinion