Title: 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 (Co-Care).
Funder: Department of Health (England)

Abstract: Development Grant work plan 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 Aim: 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. Method: 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 cultural variations in end-of-life care and will address diversity within local populations. We will use a variety of channels of communication (e.g. postal, web-based, electronic), including invitations to participate in Help the Hospices publications, to maximise response rates. The main purpose of the survey will be to record the type of volunteer services provided, the organisational structure and method of delivery, training undertaken, number of caregiver participants, and any evaluation data. This will provide a basis for identifying examples of innovative and creative practice and act as a catalyst for the refinement and further expansion of community-based services. Outputs: Project 2 will provide direct evidence from existing community-based initiatives for family caregivers in palliative and end-of-life care to inform the development of the proposed model of support for family caregivers and implementation pathway. This will form part an additional resource for the participatory dialogue with stakeholders in Project 3. It will provide a channel of communication to extend invitations to a wider sample of community groups and hospice and residential care providers to participate in more detailed ethnographic investigation (including semi-structured interviews and non-participant observation) of their work with caregivers as part of Work stream 2, and establish deeper channels of communication with potential participants in the continuing programme of research. Project 3 Aim: To collect a critical mass of evidence drawing on experience and expertise of family caregivers, care recipients, service providers, volunteer groups and third sector organisations through linked focus groups and workshops to underpin decisions about the proposed complex model of support, to be fed into a consensus conference and qualitative elicitation study in the future research programme (Work stream 2). Methods: We will conduct a series of approximately 5 focus groups and linked workshops with family caregivers, care recipients, service users, service providers, volunteer groups and third sector organisations. Focus groups and workshops will take a participatory action research approach, in which, using resources generated in Projects 1 & 2, normalisation process theory and concepts of coherence (i.e. ‘Does this make sense), and cognitive participation (i.e. ‘Do I want to engage with this’) will be introduced as an option for facilitating decision-making about an agreed model of support for family caregivers to be taken forward to a consensus conference as part of Work stream 2. Caregivers (aged > 18 years) who are the main source of unpaid care for a family member or friend who is either a) included on the GP’s supportive care register or b) under the care of community palliative care services will be invited to participate, together with their family member or friend, in dedicated focus groups. These will focus on the range and nature of support needs, positive and negative experiences of support received, and perceptions of the effectiveness of different models of support (using a pre-prepared typology based on reviews of existing evidence). Discussion will also focus on the quality of channels of communication between family caregivers, care recipients and sources of formal, informal and voluntary support. Other categories of participants will be invited to participate in their own dedicated focus groups. Focus groups will be linked to workshops, which will address questions of design and mapping, and deliver final proposals for a consensus conference on a model of support in the future research programme. Outputs: Project 3 will provide evidence from the experience and expertise of family caregivers, care recipients, service providers, volunteer groups and third sector organisations to underpin the development of the proposed model of support. Focus groups and workshops will deliver final proposals and an initial basis for developing partnerships and mapping and understanding channels of communication with carers at high risk of health inequalities in the community, to be carried forward in the consensus conference and elicitation study in Work stream 2 as it unfolds in the future research programme. Project 4 Aim: To establish collaborations with national and international experts on implementation science and methods of evaluation, inform the process of research design, and build capacity for implementation research locally, nationally, and internationally. Method: Following a systematic search of implementation science journals of relevant theoretical and empirical papers, we will establish direct contact with a corresponding authors to develop a critical dialogue on priorities and practices, to be conducted by electronic means (e.g. email, Skype, blog posts, or Facebook) (see Kralik et al, 2005). We will use mentorship agreement with Senior Trials Managers from the University of Southampton Clinical Trials Unit to establish methods of management of trial process/data in feasibility study and randomised controlled trial. Outputs: Project 4 will help to ensure that the process of research design in the future programme of research will be conducted in accordance with best practice in implementation science, and will help to build capacity in this specialised area of health service research. It will also provide an important source of expertise and critique for delivering key practical and methodological findings in the future dissemination strategy.


Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE