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21/16 – Improving support for adult and/or older carers commissioning brief

Contents

Commissioning brief for 21/16 Improving support for adult and/or older carers 
Closing date: 1pm, 5 August 2021 (two stage – Stage 1 to Stage 2)

Scope

The Health Services and Delivery Research (HS&DR) Programme wishes to fund high quality, theory-led work on effective approaches to supporting carers. New research of all kinds is needed, but specific priorities have been identified by carers, voluntary groups and others. Some examples of priorities identified include overviews of what works to reduce social isolation for carers, evaluations of models of ‘centres’ to support carers, and better ways of identifying and assessing carer support needs, particularly older individuals, and those in marginalised communities.

The HS&DR Programme issued a call for new research on support interventions for carers in 2019, having identified little high-quality primary research in an earlier HS&DR review of evidence. One study was funded from the call NIHR129645, and focused on support for young carers. There continues to be gaps in the HS&DR portfolio on adult/older carers research in specific priority areas.

Since the last call, the National Institute for Health and Care Excellence (NICE) guideline 150, “Supporting adult carers” has made several recommendations for further research to support adult carers.

The Carers Action Plan 2018-2020 reinforced the government’s commitment to supporting carers and included “effective identification” of older carers and carers of people with dementia. The Next steps on the NHS Five Year Forward View emphasised the need for new ways to identify and support carers, especially the ‘most vulnerable groups’ such as carers aged over 85 years and carers with their own health needs. The call is timely with an increasing policy drive to support carers and will be critical to the underpinning evidence base.

For the purposes of this call, a carer is anyone aged over 18 years, living in any setting, who provides unpaid care, help, or support to a person with care needs for a few hours, days, or weeks who may be ill, older or a disabled family member, friend, or partner (reference: Carers UK policy briefing, "Facts about carers". Carers UK 2019, London). Care provided by carers is widely viewed as personal hands on care, but carers provide care in a much wider sense of the term. This can include remote emotional support, managing appointments, dealing with medications and these are within the scope of the brief. Research addressing the health inequalities of carers themselves, for example on the needs of those least likely to access current services due to geographical, socio-economic, literacy or cultural barriers is of particular interest in this call.

Unpaid carers may need help and support to enable them to carry on their caring role. The support must promote carers’ wellbeing and prevent any physical and mental health deterioration. A break from caring responsibility should be well planned, meaningful, and positive for the carer as well as the person cared for. Replacement care, sometimes known as respite care, is any care arrangement designed to give rest or relief to unpaid carers. There are two main types of replacement care; care at home and care away from home. Examples of replacement care at home may involve a personal assistant, support worker or paid carer visiting the home. Examples of replacement care away from home include day centres, peer support for carers, and befriending for those cared for, short holidays for carers such as provided by Revitalise, or charities such as After Umbrage providing free, short breaks for carers looking after or recently bereaved of someone they cared for with a life-limiting condition.

Areas of interest

The HS&DR Programme would like to fund high quality research, focused on evaluating the organisation of support services including how contextual factors influence delivery and implementation, together with an appropriate cost analysis of the different approaches and what interventions/support services work for which groups of carers the best and under what circumstances. Any proposal meeting that brief will be considered, but some specific priority areas have been identified. Note that the focus of this call is addressing the needs of adult and older carers. This aligns with the NICE guideline 150, “Support for adult carers” and a recent prioritisation project run by the Health and Care Research Wales in association with the James Lind Alliance, that also identified several evidence gaps for carers of older people and made several research recommendations, some of which are included below. The HS&DR Programme would like to invite research that covers one or more of these areas.

Identification and assessment of carer needs 

  • Effective approaches to facilitate identification of adult and/or older carers, not yet known to health and social care services and who may not identify themselves as `carers’.
  • Testing tools to identify the support needs of carers and testing their implementation with services funders and commissioners.
  • Knowledge mobilisation of these tailored assessment tools and support interventions into practice particularly supporting partnerships between academic researchers, policy makers, commissioners, and practitioners.
  • Acceptability and effectiveness of different ways to assessing carers’ needs such as whole family centred approaches. 
  • Identifying specific support needs for the following carer groups:
    • carers with health conditions
    • carers who are caring for those with high intensity needs
    • carers who are caring for more than one person
    • carers who are combining caring with employment
    • sandwich carers
    • bereaved carers

Access to services

  • Variation in the provision of support services and uptake, including barriers to accessing carers’ support services, particularly from marginalised communities and groups.
  • Acceptability of services or care models for these group and the individuals they look after.

Support interventions

  • Effectiveness and cost analysis of support interventions (including social prescribing and carer passport schemes) for adult and/or older carers, including those with special needs such as caring for disabled adult child/ren or sandwich carers. Please note a wider HS&DR funding opportunity is currently open inviting research at scale to evaluate social prescribing initiatives. 
  • Impact of interventions on carers’ health and social outcomes (including measures such as social connections or economic stability) and those of the care recipient (where appropriate), and on health and social care service utilisation.
  • Overview (realist review) of what support interventions work best for what kinds of carers in what circumstances.
  • Effective approaches to training and supporting carers to help reduce caring-related incidents and improving sustainability of the care provided.

Organisation and delivery of support services for carers

  • Approaches to how carer support services are organised and commissioned by local government and third sector organisations.
  • Approaches to how support services are organised and delivered to meet the specific needs of different types of carers of different cultures and backgrounds – including evaluation and cost-effectiveness of models of centres (day centres, meeting hubs), networks.
  • Acceptability and effectiveness of support and respite care models aimed at carer wellbeing. 

There may be some specific research areas arising from the COVID-19 pandemic, such as the impact on carers and carer support of lockdown, especially for shielding populations, although applicants should consider how findings will be relevant for the longer term. We do not anticipate receiving research that is exclusively COVID-19 related as NIHR has separate calls on Recovery and Learning from COVID-19 and Long COVID-19.

Applicants need to demonstrate that proposed work is complementary to the existing evidence base and does not overlap with prior or ongoing research. Applicants should be aware of reviews in these areas, which point to gaps for further primary research.

Applicants should provide a clear justification as to why the research proposed is needed, such as, what gap in existing knowledge will be filled, and what difference will be made to carers and service providers.

All research funded under this call must consider addressing the needs of all adult and older carers who should be benefitting from this research. This means applicants will have to show inclusivity in how and where the study is to be conducted. Findings will need to be sufficiently granular as to be applicable to different ethnic minority groups. Applicants will also need to show they are going to locate the research geographically in areas where findings will be most needed or impactful.

Identified research need

Existing evidence on support for carers is cross-sectional and concerned with packages of support with potentially wide variation in terms of included service models and interventions, and typically only offers a snapshot of a point in time. Therefore, appropriate longitudinal designs, where feasible, to evaluate the outcomes of interventions in terms of changes to carer quality of life, social connectedness/interactions and wellbeing, and ability to stay in employment in the medium and long-term is required, as well as impact on the recipient of care and the wider health and social care system. Longitudinal studies would need to include a plan for producing outputs through the research process

Evidence on the role and contribution of carers is highly fragmented and exists in the form of a wide range of research articles, projects, reports, data sets, conference proceedings and digital resources produced by different organisations and sectors. Access to useable information is important to enable health and social care commissioners and providers meet the needs of adult and older carers, facilitating choice, and improving their quality of life. Research focussed on coherently synthesising existing evidence and realist synthesis for adult and/or older carers and what support interventions work under what circumstances for this group is needed.

Further information on the background to this call and relevant studies identified is provided in the supporting information document.

General guidance

The NIHR Health Services and Delivery Research Programme supports applied research with the aim of improving health and social care services across the UK and is open to any methodology, or combination of methods, which is appropriate to answer the proposed research question(s), and this must be fully explained and justified. In order to enhance the success of a proposal a clear theory of change and pathway to impact with links into the NHS and social care is required. It is useful to consider in your study design how outcomes could be scaled up to maximise impact and value for money across the NHS and social care; the focus is on applied research with tangible impact on systems that improve the quality, accessibility and organisation of health and social care services. This also includes stakeholder engagement and the development of processes, tools, and guidelines to strengthen workforce capacity.

Research proposals should be co-produced with national organisations and professional bodies, health and social care service professionals, and service users. Links with health and social care planners, commissioners and professional bodies is encouraged to facilitate the impact and scaling up of research findings to benefit the wider health and social care system. Applicants may wish to consult the NIHR INVOLVE guidance on co-producing research.

The COVID-19 outbreak is having a significant impact across health and social care. As this research may be conducted during the COVID-19 response and recovery stage, the research should consider how the impact of COVID-19 response and recovery may affect your ability to conduct your research. Mitigating steps need to be set out to reassure as to the deliverability and feasibility of the proposed work.

The NIHR is committed to actively and openly supporting and promoting equality, diversity and inclusion (EDI). All NIHR applications need to demonstrate they have met the requirements of the Equality Act (2010) by embedding EDI throughout the research proposal, ensuring there is no discrimination across the following domains; age; disability; race, including colour, nationality, ethnic or national origin; religion or belief; sex; sexual orientation; gender reassignment; being married or in a civil partnership; being pregnant or on maternity leave. Applicants are expected to pay attention to populations in locations with greatest need, socioeconomic disadvantage, which have disproportionately less access to health and social care services and are of an under researched area.