The feasibility trials required the development of six new websites. As with the rest of the iPEx programme, we examined three exemplar conditions: asthma, smoking and caring for someone with multiple sclerosis (MS). Each project was informed by a literature and field review and by the appointment of a specialist advisory panel comprising researchers, clinicians, lay persons, representatives from the voluntary sector and other stakeholders. We used established qualitative research methods to explore the experiences, information and support needs of people in each of the three exemplar groups. The research methods were based on those used in projects already conducted by the Oxford Health Experiences Research Group. The comparator (facts and figures) sites incorporated NHS Choices information. We developed multimedia websites featuring experiential information (intervention) or facts and figures information (comparator) for three exemplar health issues, using guidelines, developed in this programme, for how best to present experiential information online.
The researchers (all then based at the University of Oxford), who collected the narrative interviews are Laura Griffith (smoking cessation), Susan Kirkpatrick (asthma) and Nicolas Hughes (carers of people with MS). The development of the three experience-based websites was overseen by Ruth Sanders. Ruth also developed the three comparator websites which had the same ‘look and feel’ as the intervention sites. These multi-media sites, presented information from health professionals as facts and figures with no experiential information from patients.
The websites were developed by Adam Barnett under the leadership of Graham Shaw and more recently Luís Carrasqueiro (DIPEx, Oxford).
Academic input was provided by Sue Ziebland, Louise Locock, and John Powell.
Informal caregiving continues to be a crucial part of health and social care provision in the developed world. In the paper below we draw on data from a qualitative research study which examined the experiences of family members and friends of people with multiple sclerosis to explore how they interpret the label ‘carer’.