title: Effective public involvement in the HoST-D Programme for dementia home care support: From proposal and design to methods of data collection (innovative practice).
abstract: Public involvement is an important element in health and social care research. However, it is little evaluated in research. This paper discusses the utility and impact of public involvement of carers and people with dementia in a five-year programme on effective home support in dementia, from proposal and design to methods of data collection, and provides a useful guide for future research on how to effectively involve the public. The Home SupporT in Dementia (HoST-D) Programme comprises two elements of public involvement, a small reference group and a virtual lay advisory group. Involving carers and people with dementia is based on the six key values of involvement - respect, support, transparency, responsiveness, fairness of opportunity, and accountability. Carers and people with dementia gave opinions on study information, methods of data collection, an economic model, case vignettes, and a memory aid booklet, which were all taken into account. Public involvement has provided benefits to the programme whilst being considerate of the time constraints and geographical locations of members.
authors.affiliation: School of Health Sciences, University of East Anglia, UK; Division of Neuroscience and Experimental Psychology, University of Manchester, UK.
authors.forename: Clarissa
authors.initials: C
authors.lastname: Giebel
authors.affiliation: Personal Social Services Research Unit, The University of Manchester, UK.
authors.forename: Brenda
authors.initials: B
authors.lastname: Roe
authors.affiliation: Family Carer.
authors.forename: Anthony
authors.initials: A
authors.lastname: Hodgson
authors.affiliation: Family Carer.
authors.forename: David
authors.initials: D
authors.lastname: Britt
authors.affiliation: Personal Social Services Research Unit, The University of Manchester, UK.
authors.forename: Paul
authors.initials: P
authors.lastname: Clarkson
mesh_terms: D017028:Caregivers / Q000523:psychology*; D003625:Data Collection / Q000379:methods; D003704:Dementia / Q000523:psychology / Q000628:therapy*; D006699:Home Care Services; D006801:Humans; D010358:Patient Participation; D012107:Research Design; D012944:Social Support
keywords: carers; dementia; home support; intervention; patient and public involvement; service users