Investing in Happiness: Children with rare diseases
Research type
Research Study
Full title
Investing in Happiness:Using creative research methods to explore happiness, fulfilment and resilience in children with rare diseases, and their families.
IRAS ID
173358
Contact name
Kate Oulton
Contact email
Duration of Study in the UK
1 years, 1 months, 31 days
Research summary
This is a pilot study to explore happiness, fulfilment and resilience in a group of 10 children with rare diseases (aged 7-11 years) and their families. Creative research methods will be used during participatory workshops and one to one interviews to explore the concept of happiness in their lives, and how this can be captured, enhanced and drawn upon as a possible coping strategy. Children will be asked to identify and capture happy moments in their day to day lives using a number of creative means such as photography, words, drawings and/or collecting momentoes. The first workshop will prepare children for this activity and during the second workshop they will be asked to share some of their favourite moments with other children. Focus groups with parents will explore how they build their own resilience and support their child in building resilience. Data from these interviews, workshops and focus groups will be used to develop an understanding of the meaning of happiness, fulfilment and resilience for children with rare diseases. An evaluation form distributed to parents and children at the end of the study will elicit feedback on their experience of taking part in the project, exploring the feasibility and acceptability of these methods for children and families. The eventual aim is that the study outputs will include digital and creative materials which will be made available to inform, support and empower other children with rare diseases and their families, and resources for professionals who work with children with rare disease as well as learn more about this approach that can be used with other children who have frequent hospitalisations.
REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
15/YH/0088
Date of REC Opinion
25 Feb 2015
REC opinion
Favourable Opinion