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The role of social media in gathering data: An example from parents of children with the chronic condition Juvenile Idiopathic Arthritis (JIA)

2014 Conference

Abstract:

Key Issue
It is widely recognised that it is important to involve consumers in shaping research priorities and care. Based on consumer led research with parents of children with Juvenile Idiopathic Arthritis (JIA) we show that a variety of methods are needed to obtain a wide collective voice. For example, the role of Facebook, other social media can be useful for reaching parents.

Methods
A single item questionnaire was mailed to three charities and posted as a question on Facebook and a Study database. Respondents were asked to list their top three concerns about their child’s condition and care.

200 responses were obtained listing 600 concerns from which 8 themes emerged. These were Medication, Prognosis, Physical impact, Pain, Uveitis, Psychological impact, Social and educational impact, Transition to adult services and Access to care.

Discussion points
We have two central messages.

  • The first of these is the importance of obtaining a wide collective view from families in order to inform the provision of care and help shape research priorities.
  • Secondly we want to share our experience of the benefits of using social media as an effective and instant means of reaching and involving parents.

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Authors

Douglas ~ Sharon

Co-founder, Scottish Network for Arthritis in Children (SNAC). Sharon is trustee and secretary of SNAC, chairperson of the British Society of Paediatric and Adolescent Rheumatology (BSPAR) Parent Group and member of the BSPAR Executive board. She also provides a consumer perspective on the National Institute for Health Research (NIHR) Medicines for Children Arthritis Research UK Clinical Studies Group.

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Venter ~ Katharine

Katharine Venter is a parent of a child with Juvenile Idiopathic Arthritis (JIA) and has been working as a consumer representative on the National Institute for Health Research (NIHR) Medicines for Children Arthritis Research UK Clinical Study Group and other charitable roles following the diagnosis of her child's JIA.

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