Supporting Family Carers to People Living With Symptoms of Dementia at Home up to the End of Life: a Retrospective Qualitative Study Using Principles of Grounded Theory
试验速览
- 阶段
- 不适用
- 入组人数
- 30
- 试验地点
- 1
- 主要终点
- To conduct interviews with family carers
研究概览
简要总结
This is a qualitative study that will seek to gain further understanding of the support needs of family carers to people living with symptoms of dementia up to the end of life.
Family carers are friends, family members or neighbours who provide informal unpaid care to someone with symptoms of dementia. The experience of providing this care may result in family carers developing unmet needs that impact adversely on their total wellbeing. This research is potentially beneficial because little is known about the specific physical, psychological, spiritual and social needs family carers to people dying with dementia may develop.
It is a priority of the UK government and the NHS to better support family carers. The government published guidelines calling on healthcare professionals to assess and address carer needs, but the evidence base for family carers to people with symptoms of dementia is limited. Findings from this study could guide healthcare professionals when they conduct clinical assessments of carer needs.
Each participant to this study will be invited to attend a semi-structured interview at a venue of their choice where they will talk about their experiences of providing care. Participants must have provided informal, unpaid care to a friend, neighbour or family member with symptoms of dementia at home, including within the last twelve months of that person's life. This is a retrospective study so only former family carers will be eligible to participate. Participants must also be over the age of eighteen, be able to communicate in English and have capacity to give informed consent.
This research study is being funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) as part of their Research Capacity in Dementia Care Pilot Programme, which is exploring issues relating to dementia care provision.
详细描述
This study will seek to explore the experiences of former family carers who supported someone living with symptoms of dementia at home up to their death.
The principal research objective will be to identify the support needs common to this group of family carers. The study will explore the main factors that bring about these needs and it will aim to determine whether a carer's needs change as the health of the person receiving care deteriorates towards the end of life. The study will also seek to learn more about the types of assistance family carers receive from health and social care professionals, family members, friends, neighbours and the voluntary sector.
The principal research objective can be of value because it offers family carers an opportunity to share their personal stories, insights and experiences. Providing this information can increase awareness of the carers' role and indicate why a family carer's total health and wellbeing can decline whilst providing informal support to someone living with symptoms of dementia, especially as the care recipient nears death.
The findings from this study should enable healthcare professionals to conduct more informed assessments of carer capacity and wellbeing. The information collected in this study may also identity interventions that carers felt successfully enhanced their wellbeing and reduced their needs, particularly at the time when the person they cared for approached the end of life.
This study will also consider the effectiveness of the Carer Support Needs Assessment Tool (CSNAT) intervention when used by home-based family carers supporting someone living with symptoms of dementia.
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Retrospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Participants may be of any gender, ethnicity or socio-economic grouping.
- •Participants must be eighteen years of age or over.
- •Participants must have provided informal, unpaid care or support to a family member, friend or neighbour with dementia during the last twelve months of the life of the person with dementia.
- •This care may have been given on a permanent or intermittent basis.
- •The person with dementia must have died not less than six months and not more than five years prior to the date of the interview.
- •Participants must be able to communicate in English.
- •Participants must have capacity to provide informed consent.
- •Participants must live, or be able to attend an interview, in North West England, West Yorkshire, The West Midlands or North Wales.
排除标准
- •Individuals will be excluded from participating if:
- •They did not give any form of informal unpaid care or support to a person with dementia in the twelve months before that person's death.
- •The person they cared for died less than six months or more than five years before the date of the interview.
- •They are under eighteen years of age.
- •They cannot communicate clearly in English.
- •They are unable or unwilling to provide informed consent.
- •They do not live, or are unable to attend an interview, in North West England, West Yorkshire, the West Midlands or North Wales.
- •The exclusion criteria extend to anyone considered ineligible to approach based on clinical team (Admiral nursing service) concerns about the individual's ability to take part in an interview.
结局指标
主要结局
To conduct interviews with family carers
时间窗: before 31st December, 2018
collecting interview data from up to thirty family carers
次要结局
未报告次要终点
研究者
Sara Yearsley
PhD research assistant
University of Manchester