22/21 Interventions to support the health of unpaid carers

What are the impacts of interventions on the health of unpaid carers in the UK?

Unpaid carers play a vital part in ensuring that individuals in need of care continue to experience a good quality of life. The Public Health England report ‘Caring as a social determinant of health’ (2021) highlighted the need for funding robust evaluations of promising interventions for carers of older people, with clearly established pathways to impact on appropriate outcomes. It is estimated that three in five adults UK will become an unpaid carer at some point in their lives, and that more individuals will experience giving more than one caring episode.

The negative portrayal of unpaid care has generally been the focus which has shaped research and relevant social policy. Nonetheless, there are also many positive and beneficial dimensions of care provision. It can be a fulfilling experience, enrich relationships and caregiving is strongly associated with increased self-efficacy and sense of worth for the carer. Unpaid carers also contribute substantial economic value to society as a whole. In fact, Carers UK estimates that carers save the economy £132 billion per year. Providing unpaid care is nevertheless profoundly challenging. The care provided by unpaid carers is often physically and emotionally demanding, with consequences for the carer’s own health and wellbeing, as well as the caregiver’s financial wellbeing. It is therefore crucial that all is done to ensure unpaid carers are acknowledged and supported.

The number of so-called ‘sandwich carers’ (people who care for an older or disabled loved one at the same time as they have young children) is also growing. Women are primarily the ones more likely to face the pressure of multiple responsibility of providing care for young and old, in addition to employment. Research suggests that ‘sandwich carers’ are more likely to report symptoms of mental ill-health, feel less satisfied with life, and struggling financially compared with the general population.

Caregiving is dyadic, meaning caregivers and care-recipients influence each other. The start of an individual’s journey into the caregiving role is mainly due to the care-recipient experiencing an adverse event. This may be a sudden event, due to an illness or accident, or gradual, for example caring for an ageing parent (or partner) with increasing disability. The health outcomes of carer and the care-recipient are inter-linked, and the wellbeing of carers is associated with their caregiving capacity. Research into the effectiveness of interventions to support carers have and by large neglected to consider the whole family/dependent approach, as well as the different stages of the caregiver’s journey.

The Public Health Research (PHR) Programme wishes to commission research on the health impact of interventions which affects adult unpaid carers (also known as informal carers or family carers), these affects could be positive or negative. We are predominantly interested in interventions that are likely to have impact on populations at scale, addressing health inequalities and the underlying wider determinants of health.

We recognise that this call is broad and invite researchers to be targeted in their research area. Suggested research areas of interest could include (but are not limited to):

  • Evaluations of the effectiveness, the cost-effectiveness and the acceptability of the whole family approach to carer support
  • Evaluations of interventions aimed at particular caring groups, such as sandwich carers, older carers (particularly high intensity spousal/partner carers), parents of disabled children, young carers and carers of older people
  • Exploring the differential impacts of interventions by ethnic origin/gender, due to the differing expectations of the caregiving role
  • Evaluations of interventions directed at former carers. This may include carers who have recently stopped providing care or adults who provided care as children
  • Evaluations of interventions considering the diverse nature of care provision (for example non-English-speaking carers, new to care provision, high-intensity care, long-term carers and former carers). This could also include consideration of the accumulative impact of caring and ‘serial carers’ (i.e. carers changing from care-recipient to care-recipient), as well as barriers to accessing help and support for carers
  • Research into the health and social benefits of volunteering for carers, specifically those occupying lower socio-economic class positions
  • Evaluations of schemes which allow carers to, for example, work alongside caring responsibilities, return to work, undertake employment or training, or give carers a break from their caring role
  • Evaluation of carer passport schemes, including the consequence of many unpaid carers not self-identifying
  • Evaluation of interventions that increase the level of choice of becoming an unpaid carer
  • Evaluation of digital interventions aimed at supporting carers, particularly interventions aimed at training and building capacity
  • Evaluations of interventions where the primary focus of the intervention is not necessarily directed at unpaid carers, but the outcome might impact on their wellbeing (positively and negatively). This could include, for example, changes to benefits.

A range of study designs and outcome measures can be used. Researchers will need to clearly describe and justify their choice of target population group, as well as rationalise the most suitable methodological approach. Primary outcomes must be health related. Outcome measures of interest may include subjective wellbeing, physical health, quality of life, depression, anxiety, sleeping problems, loneliness and life satisfaction. Also of interest are benefits to the wider community. Researchers are encouraged to consider other outcome measures including the broader determinants of the inequalities of health, which should be specified and justified. Researchers will also need to specify key outcomes and how these will be measured in the short, medium and long term. Understanding the value of public health interventions – whether the outcomes justify their use of resources – is integral to the PHR programme, where resources relating to different economic sectors and budgets are potentially relevant. The main outcomes for economic evaluation are expected to include health (including health-related quality of life) and the impact on health inequalities as a minimum, with consideration of broader outcomes welcomed. Different approaches to economic evaluation are encouraged as long as they assess the value and distributive impact of interventions. Applications that do not include an economic component should provide appropriate justification.

Researchers are strongly encouraged to ensure that service users or people with lived experience from the target audience are involved in the design and planning of the intervention and/or as potential costed members of the research team. Researchers should demonstrate the relevance of their proposed research to decision-makers and they might do this through involving them as a costed member of the research team. Researchers are encouraged to explain how they will share their findings with policy makers, public health officers, special interest groups, charities, community audiences and other relevant stakeholders. Researchers are expected to be aware of other studies in this area and ensure their proposed research is complementary.

For further information on submitting an application to the PHR Programme, please refer to the PHR supporting information for applicants submitting stage 1 and stage 2 applications.


The Public Health Research Programme (PHR) is accepting Stage 1 applications to their commissioned workstream for this topic.

In order to apply you will need to carefully review the:

This commissioned call is being supported by Public Health Research Applications and Design Advice (PHRADA), which is provided by the NIHR Research Design Service (RDS) across England. If you would like to request support for this call, please contact PHRADA by email phrada@nihr.ac.uk.

Timescales

Proposals received by 1pm on 16 August 2022, and deemed within remit, will be assessed for their importance to public health by the Prioritisation Committee (PC) in September 2022.

Shortlisted Stage 1 proposals from this round will be considered by the Funding Committee (FC) in October 2022, and assessed for scientific quality, feasibility and value for money. Applicants will be informed of the FC’s decisions in late October 2022, and successful applicants will be invited to submit a Stage 2 application. Applicants have eight weeks to complete and submit a Stage 2 application for it to be considered at the February 2023 Funding Committee.

Please note: If a very high response is received, some stage 1 applications may not be taken forward for further assessment if they are deemed to be non-competitive and/or it may be necessary to defer some stage 1 applications until a later date. ‘Non-Competitive’ means that a proposal is not of a sufficiently high standard to be taken forward for further assessment in comparison with other proposals received and funded by the PHR Programme because it has little or no realistic prospect of funding. This may be because of scientific quality, cost, scale/duration, or the makeup of the project team.

All primary research projects are expected to establish a programme appointed Study/Trial Steering Committee and it is important that you read the TSC/SSC Guidance before completing your application. Costs incurred by this committee should be included in the budget as appropriate.

Visit funding web page
(https://www.nihr.ac.uk/funding/2221-interventions-to-support-the-health-of-unpaid-carers/30126)

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