NHE Magazine March/April 2017 Issue Fear Barriers to Help-Seeking in the UK
Jon Paxman, 2020health senior researcher, explains why reducing fear barriers may be essential to promoting timely help-seeking, improving health outcomes and supporting greater equity of healthcare within the NHS.
Those who work in the health service know well that not everyone agrees with the aphorism ‘knowledge is power’. Some people choose to remain ignorant about their health status in the belief that knowledge may in fact be disempowering. And yet the choice of timely or delayed response to symptoms, or indeed health check invitation, can mean the difference between good health (or the ability to live well with a condition) and permanent disability; in some cases, it can mean the difference between life and death.
Our report, published 30 January 2017, revealed that probably the most common barrier to help-seeking is failure to interpret or recognise the seriousness of symptoms. This has been noted as especially true for cancer, and for some, help-seeking avoidance in this context will be attributable to ‘worry about wasting the doctor’s time’. But another critical psychological reason for intentional information avoidance is the ‘fear of finding out’.
In the literature, fear barriers are perhaps most frequently described as ‘fear about what the doctor might find’, thus relating to diagnosis and outcomes. Such barriers include fear of learning about a serious or even terminal illness, fear of treatment, or fear of stigma or discrimination.
But fear barriers extend further. A person may fear finding out due to the processes involved: they may fear the clinical environment, or an embarrassing or painful investigation. Another fear barrier for men is that of perceived threat to masculinity – the fear of appearing weak or not in control. This has been recognised in a government-sponsored ‘fear of finding out’, or ‘FOFO’, campaign in Australia, specifically aimed at men in middle age.
Adopting the acronym, we concluded that FOFO could be usefully employed to refer to a distinct sub-set of psychological barriers to help-seeking. In such a case, the subject has knowledge of a symptom, or has been invited to a screening or general health check, but wishes to remain ignorant out of fear of (i) the clinical environment, and/or (ii) clinical investigations, and/or (iii) diagnosis. Fears within one or more of these domains may of course interact with other psychological, environmental, experiential and logistical barriers to help-seeking. To what extent this happens is currently unknown, since few studies have captured robust, quantitative data on fear barriers, let alone barrier interrelationships. But while there is still much to understand, the literature does reveal some important, general findings on fear-based information avoidance.
Firstly, concerning types of fear barrier to help seeking, a rapid review revealed some 16 different fears in total, though not all of equal significance and relevance. Some fears clearly have stronger associations with particular symptoms or potential disease. Fear barriers include:
- being physically examined
- clinical investigations
- stigma and/or discrimination
- appearing weak / not in control
- hospital environment
· Secondly, we sought to understand FOFO ‘at risk’ groups. In general, fear barriers may be more common among men, but evidence does not all point one way. Men appear endure symptoms for longer before seeking medical help, and also report higher levels of embarrassment during or in relation to medical appointments.
Investigating life-stages, FOFO appears to be a more pressing issue for those in middle age. With middle age comes higher risk of cancer, stroke, kidney disease, heart disease, type 2 diabetes and dementia. Further, 77% of men and 63% of women in middle age are overweight or obese, and diabetes rates have doubled amongst this age group in the last 20 years. People with unhealthy lifestyles, including heavy drinkers and smokers, have a greater propensity towards help-seeking delay, and fear barriers – particularly fear of being pressured to make lifestyle changes – are known to contribute to this behaviour.
Whether fear-based avoidance behaviour is higher or lower among ethnic minorities in the UK is little researched. But this could be an important line of enquiry in mental health in particular, considering ethnic minorities as a whole are less likely to receive treatment, with black adults having the lowest treatment rate of all.
Another important consideration for FOFO at-risk groups is socioeconomic status. Indeed, there is evidence that various socio-demographic factors may have direct links to both diminished health status and fear barriers. For example, low educational attainment has been associated with both poorer health status as well as fear-based delay to help-seeking. Thus a potential interrelationship of factors may see a bi-directional exacerbation of health inequalities.
In terms of fear-barrier risk by disease area, cancer appears to be the most significant and widely researched, followed by mental illness. Other conditions of relevance include myocardial infarction (heart attack), infectious diseases, diabetes and rheumatoid arthritis.
Thirdly, we looked at fear-barrier prevalence. UK data is not strong here. One US study found 31% of adults claiming to have avoided a doctor visit they had deemed necessary; one third (34%) of this group cited ‘fear of a serious illness’ as a key barrier. Patient response in one UK study indicated that fear barriers to help-seeking for the majority of cancers may cause around one third (32%) of all conscious patient delay. Of course, the prevalence of fear barriers will vary by suspected disease or condition.
FOFO is first and foremost a likely danger to the individual’s own health status. However, a person’s fear barrier may also present dangers to others. One literature review found that anywhere from 12% to 55% of people who undergo testing for HIV fail to return to learn whether they are infected. This example also shows how fear barriers are not confined to the same point of the patient journey. FOFO may manifest prior to any primary care contact, or following GP consultation and prior to hospital-based testing, or indeed following testing, with the avoidance of test results. In this respect, the influence of fear barriers on hospital outpatient non-attendance rates may be an important research area to inform primary care practitioners in their education and support of patients.
In summary, evidence already makes clear that fear barriers can present a major obstacle to disease prevention and early intervention across a range of conditions. FOFO is therefore linked to reduced health-related quality of life and, given strong association with life-threatening disease, may lead to or hasten premature death.
Regarding the public health response, we might note that many of the issues described above speak to the issue of health literacy. In its broadest definition, health literacy includes not just ‘knowledge’ and ‘capacity’ but the motivation to access, understand, appraise and apply health information. And this is important because though health literacy is strongly linked to literacy and educational attainment, it is clear that intelligent, highly literate people can lack motivation (self-discipline and self-efficacy) to make wise, healthy choices.
It has been suggested that only 40% of the UK population are highly motivated to adopt healthy lifestyles, with the rest having more negative and fatalistic attitudes towards their health. A general comparison perhaps, but evidence suggests health promoters will in time need to convey FOFO-dispelling messages to a diverse population.
Our research was initiated by the pharmaceutical company AbbVie, who asked us to investigate the health literature on fear barriers to help-seeking in preparation for the launch of its new partnership discovery programme, Live:Lab. It is our hope that AbbVie’s Live:Lab will encourage further debate and research in this important area, as much work remains to understand the complexities of FOFO and the extent to which it interacts with other barriers to deter help-seeking. Reducing fear barriers may well be essential to tackling negative attitudes, promoting timely help-seeking, improving health outcomes and ultimately supporting greater equity of healthcare within the NHS.