Re: The need to “carer proof” healthcare decisions
We commend Al-Janabi et al  on their timely publication highlighting the considerable importance of the patient-carer dyad in determining the effectiveness and efficiency of interventions. We whole heartedly support the authors statement that “There is both a moral and a practical imperative to consider carers in healthcare decisions given the vital role they have in supporting the health system.” The Care Act (2014)  sets out principles for including caregivers discharge planning and gives legal entitlements for social care providers to assess needs and provide a plan of care but the impact of the act has yet to be evaluated.
Although clinical guidelines frequently recommend involving caregivers in care decisions, there is limited guidance for how this may be done. The Royal College of General Practitioners provide an education resource for health practitioners working in primary care. Having a caregiver present (where there is one) however, in either primary or secondary care consultations is not enough. Rather, active involvement includes caregivers being given an opportunity to ask questions and to have their needs identified and managed too. While this is a challenge in the time limited world of the current UK health care system, the consequence in an aging population of not doing this adequately, is that the caregiver’s health deteriorates and they require hospital admission, leading to not one but two patients as the cared for person needs support too.
We are currently applying the model proposed by Al-Janabi et al, that patient interventions should be developed to include caregivers and an evaluation of the impact of the intervention on caregivers. We have developed a facilitated home-based self-management programme (REACH-HF) for people living with heart failure and their caregiver that is now being formally tested as part of a National Institute of Health Research funded study, under the Programme Grants for Applied Research scheme.[4, 5] The intervention includes specific resources and intervention components for supporting caregivers in a) providing self-management support b) taking care of their own health. It has been developed to include patients and caregivers in the design of the intervention through a patient and public involvement group and by conducting our own research to identify caregiver needs.
Designing the REACH-HF intervention and conducting caregiver research has been challenging. We found that many individuals (such as partners) who support the health needs of people with heart failure do not see themselves as ‘caregivers’, and some perceived there was stigmatisation about the role, making it difficult to identify a broad range of caregivers to inform the development of the intervention. While we found many caregivers coped well, there were individuals who appeared on the surface to be coping, but when asked, were clearly not coping well and we saw clear evidence of mental distress. This group of caregivers were of particular concern as they had often bottled up the stress of being a caregiver and had not accessed any informal social support networks or formal health and social care support networks. Therefore, one key consideration for interventions is to identify un-acknowledged stress and assist caregivers to use their support systems.
Again, we congratulate the authors on highlighting this important issue and we would encourage researcher funders to prioritise the importance of further research in this field to meet the needs of caregivers as they work with health and social care providers to support people living with complex chronic health conditions.
Wingham J,1,2 Frost J,3 Greaves, CJ,3 Jolly K, 4 Taylor RS,3 Dalal HM,2 Britten N, 3 Edgeler C5
Corresponding author Jennifer Wingham, Senior Clinical Researcher,
1BIU, Knowledge Spa, Royal Cornwall Hospitals NHS Trust, Truro, TR1 3HD UK email@example.com
2 University of Exeter Medical school, Primary Care Research Group, Exeter, UK
3 Institute of Health Research, University of Exeter Medical School, Exeter, UK
4 University of Birmingham, Birmingham UK
5 REACH-HF Patient and Public Involvement Group, Caregiver, Truro, UK
1. Al-Janabi, H, Nicholls J, Oyebode J. The need to “carer proof” healthcare decisions. BMJ, 2016. 352.
2. Chapter 23. The Care Act. 2014, The stationery Office: UK.
3. Royal College of General Practitioners. Involving and supporting carers and families: an educational framework and learning resource for GPs and primary care teams. 2014, Royal College of General Practitioners: London.
4. REACH-HF. Rehabilitation Enablement in Chronic Heart Failure. 2014; Available from: http://www.rcht.nhs.uk/RoyalCornwallHospitalsTrust/WorkingWithUs/Teachin....
5. Taylor, R.S, et al., Clinical effectiveness and cost-effectiveness of the Rehabilitation Enablement in Chronic Heart Failure (REACH-HF) facilitated self-care rehabilitation intervention in heart failure patients and caregivers: rationale and protocol for a multicentre randomised controlled trial. BMJ Open, 2015. 5(12).
6. Wingham J, et al. Needs of caregivers in heart failure management: A qualitative study. Chronic Illness, 2015. 11(4): p. 304-319.
Competing interests: No competing interests