title: The evaluation of a healthcare passport to improve quality of care and communication for people living with dementia (EQuIP): a protocol paper for a qualitative, longitudinal study.
abstract: There is an urgent need for the development of simple communication tools that convey the strengths, assets, and healthcare needs of people living with dementia. A Healthcare Passport may improve communication with range of health and social support services, enhancing quality and continuity of care, and to permit a consideration of the challenges and how these might be managed effectively and compassionately. This study aims to evaluate the acceptability and use of this type of intervention for people living with dementia and their carers.
  
  
  
  This is a qualitative longitudinal study informed by a critical realist review. The participants will be individuals identified as having mild-moderate dementia and informal carers. The in-depth interviews will occur at three points over the course of 18 months as they use the passport. This will be supplemented by analysis of the content of the passports and information from health and social care providers on the daily practicalities of using the passport in a range of healthcare settings.
  
  
  
  By using a critical realist review and a qualitative, longitudinal approach, the study allows for the assessment of a complex intervention in a manner which goes beyond evaluating the basic efficacy of the passport, but looking more deeply at how it worked, for whom, and in what context. It has the potential to develop new data on how interventions improve communication across a range of service providers, while encouraging health and social care professionals to respect and encourage the development of self-management and retention of personhood throughout the progression of life-limiting illnesses.
authors: The Bamford Centre for Mental Health & Wellbeing, Ulster University, Cromore Road, Coleraine, Northern Ireland. g.leavey@ulster.ac.uk.
authors: Gerard
authors: G
authors: Leavey
authors: Royal College of Practitioners, Belfast, Northern Ireland.
authors: Aine
authors: A
authors: Abbott
authors: Northern Ireland Hospice, Belfast, Northern Ireland.
authors: Max
authors: M
authors: Watson
authors: Western Health and Social Care Trust, Derry-Londonderry, Northern Ireland.
authors: Stephen
authors: S
authors: Todd
authors: The Bamford Centre for Mental Health & Wellbeing, Ulster University, Cromore Road, Coleraine, Northern Ireland.
authors: Vivien
authors: V
authors: Coates
authors: The Bamford Centre for Mental Health & Wellbeing, Ulster University, Cromore Road, Coleraine, Northern Ireland.
authors: Sonja
authors: S
authors: McIlfactrick
authors: Queen Margaret University, Edinburgh, Scotland.
authors: Brendan
authors: B
authors: McCormack
authors: The Bamford Centre for Mental Health & Wellbeing, Ulster University, Cromore Road, Coleraine, Northern Ireland.
authors: Bethany
authors: B
authors: Waterhouse-Bradley
authors: The Bamford Centre for Mental Health & Wellbeing, Ulster University, Cromore Road, Coleraine, Northern Ireland.
authors: Emma
authors: E
authors: Curran
mesh_terms: D003142:Communication; D003266:Continuity of Patient Care / Q000458:organization & administration*; D003704:Dementia / Q000523:psychology* / Q000628:therapy; D004645:Empathy; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D015397:Program Evaluation; D036301:Qualitative Research; D058996:Quality Improvement / Q000458:organization & administration*; D011788:Quality of Life; D012107:Research Design; D012944:Social Support; D006113:United Kingdom
keywords: Dementia; Doctor patient communication; Personhood; Qualitative longitudinal research; Realist review; Self-management; Study protocol