Community-based Volunteer-led Support for Family Caregivers Caring for a Relative or Friend with Palliative and/or End-of-Life Care Needs at Home
Study Code / Acronym
Co-CareAward Number
RP-DG-1212-10013Award Type
Programme Development GrantsProgramme
Programme Grants for Applied ResearchStatus / Stage
CompletedDates
7 November 2014 -8 May 2016
Duration (calculated)
01 years 06 monthsFunder(s)
NIHRFunding Amount
£90,691.00Funder/Grant study page
NIHRContracted Centre
University Hospital Southampton NHS Foundation TrustContracted Centre Webpage
Principal Investigator
Professor Jessica CornerWHO Catergories
Models across the continuum of careTools and methodologies for interventions
Disease Type
Dementia (Unspecified)CPEC Review Info
| Reference ID | 197 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Study Code / Acronym | Co-Care |
|---|---|
| Award Number | RP-DG-1212-10013 |
| Status / Stage | Completed |
| Start Date | 20141107 |
| End Date | 20160508 |
| Duration (calculated) | 01 years 06 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | University Hospital Southampton NHS Foundation Trust |
| Contracted Centre Webpage | |
| Funding Amount | £90,691.00 |
Abstract
The proposed programme development work plan consists of four interconnected research projects, spread over 18 months, some of which will be conducted in parallel. The main aim of the development phase of the programme is to work with and learn from the experiences and expertise of key stakeholders to establish a critical mass of evidence to underpin decisions about the proposed model of support, its evaluation, and implementation. We will use this phase to extend channels of communication and dialogue with research partners, including clinical trials specialists, implementation scientists and participants. Project 1 To complete a review of a critical mass of existing empirical evidence on the effectiveness of strategies to support family caregivers providing palliative and/or end-of-life care for a relative or friend in the community. Relatively little empirical evidence on the potential role of volunteers in supporting family caregivers providing palliative and end-of-life care exists in the published literature. To develop necessary innovations in practice, we must evaluate evidence from analogous fields for transferrable elements. While systematic reviews (e.g. Candy et al, 2011) have effectively assessed existing evidence from randomised controlled trials of supportive interventions (delivered by either health or social care professionals) for family caregivers who provide palliative and/or end of life care in the home. However, detailed information about the exact nature of the intervention and method of delivery is lacking both from the systematic review and the published research articles. Published reports of both health care professional- and volunteer-led approaches provide few if any details of processes of implementation or the experience of stakeholders. In Project 1 we will conduct an initial scoping review of relevant literature. This will be followed, as part of the future Programme Grant research plan, by a more extensive review of empirical evidence in which we will establish direct contact with corresponding authors of RCTs included in Candy et al s (2011) systematic review for the Cochrane Collaboration, and with leading academic in this field to develop an on-going critical dialogue. The majority, if not all, relevant studies were conducted outside the UK. A critical dialogue, therefore, will be conducted by electronic means (e.g. email, Skype, blog posts, or Facebook), following the methods described by Kralik et al (2005). We will also re-run search strategies described in recent systematic reviews of support provided for family caregivers providing palliative and/or end-of-life care both by health care professionals and lay volunteers. Outputs: Project 1 will provide the foundations for a comprehensive review of existing empirical evidence on the effectiveness of strategies to support family caregivers providing palliative and/or end-of-life care for a relative or friend in the community. This will form part of a portfolio of resources to be included in the participatory dialogue with stakeholders in Project 3. Project 2 Aim: To conduct a nationwide survey of current community-based, volunteer-led initiatives to support family caregivers providing palliative and/or end-of-life care in the home. Little is currently known about the number and range of these initiatives in the UK, although informal sources of information indicate there are a great range and variety in existence. This project will bring together information about current community initiatives for family caregivers in palliative and end-of-life care in a single database. Method: We will use the national database of palliative care services maintained by Help the Hospices (permission granted) to contact palliative care providers nationwide, and request information on known relevant local community-based, volunteer-led initiatives. This survey will include items on cultur
Aims
To conduct a nationwide survey of current community-based, volunteer-led initiatives to support family caregivers providing palliative and/or end-of-life care in the home.