Crossing The Line

• Research type

  Research Study

• Full title

  Crossing the Line: Providing personal care in the context of families affected by dementia.

• IRAS ID

  322588

• Contact name

  Shirley Evans

• Contact email

  shirley.evans@worc.ac.uk

• Sponsor organisation

  University of Worcester

• Duration of Study in the UK

  1 years, 6 months, 0 days

• Research summary

  Consultations with family carers supporting people with dementia show that the issue of personal care is very important to them, but is often a tipping point for the person living with dementia to move into a care home. Adapting to the change in role that providing personal care brings is worsened by lack of skills, know-how, shame and embarrassment, and the person with dementia may be increasingly unaware about their needs or the impact on their family. This leads to high levels of distress, causing physical and emotional harm both to the person and their family carer.
  Past research shows little is known about personal care in the context of dementia and family care. This study will help us hear the often-hidden voice of family carers on this important topic and understand the issues better, so we can develop materials to help families better cope with the challenges.
  Study participants will be identified through our research team’s networks. We will undertake an online/postal UK-wide survey of family carers to learn about their views and experiences of providing personal care and the challenges it brings, and what they think would help. We would then explore topics identified in the survey during interviews with family carers to help us unpick the most relevant issues.

  We would use the survey and interview results to identify ways to better help carers, including advice and guidance materials for family carers, resources for health and care professionals and staff, or a combination. Follow-up events with families and professionals will develop a set of pilot training materials that will be tested and evaluated with family carers, and then expanded post-study. Our study findings and resources will be widely available and free in several accessible formats including online and paper-based resources such as booklets, training materials and videos.

• REC name

  North West - Liverpool Central Research Ethics Committee

• REC reference

  23/NW/0098

• Date of REC Opinion

  28 Apr 2023

• REC opinion

  Further Information Favourable Opinion