Dataset Information

Cancer as the "perfect storm"? A qualitative study of public attitudes to health conditions.

ABSTRACT:

Aims

Our aim is to identify important attributes of major diseases that shape how they are perceived by the public.

Methods and results

Four focus groups among members of the public were recruited, in March and October 2016, and used semistructured discussion to explore important attributes of cancer, heart disease, stroke, dementia, mental illness, and infectious disease. Common themes were identified by using inductive thematic analysis.Five themes were identified: fear, impact on family and friends, hope, detection, and prevention. Fear of cancer includes not only fear of death but also of aggressive treatments. Loss of dignity is feared in dementia, while infectious disease raises fear of uncontrollable "plague"; in contrast, people with mental illness may themselves be seen as a potential threat. The impact of cancer and its treatment on family and friends was described as intense and all-consuming, even for those not involved directly in caring; with dementia and stroke, the family impact is taking on care, including funding, over the long term with little expectation of improvement. Hope is a major theme in cancer and stroke recovery, linked with the need to take action, often expressed in aggressive language of "fighting," but seen as futile in dementia. Detection difficulties for "silent" cancers mean that real treatment opportunities are missed; cardiovascular and infection risk, however, are seen as easy to identify and act on, whereas mental illness and dementia are seen as poorly diagnosed and with limited treatment options. Prevention awareness is high for cardiovascular disease and infection, lower for cancer, and limited for dementia and mental health.

Conclusion

Although themes overlap across diseases, the specific concerns are different and each condition has a unique profile. Quantifying the relative importance of these themes could allow their incorporation in decision-making, not only when they occur as a named disease but also in any relevant condition.

SUBMITTER: Morrell L

PROVIDER: S-EPMC6034427 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:OBJECTIVES:The aim of this study was to critically explore the views of the public about the acceptability and feasibility of proactive approaches to earlier dementia diagnosis and also identification of people at high risk of dementia. DESIGN:Qualitative study using task group methodology and thematic data analysis. SETTING:Task groups were held either at the university (n=5) or at a carers' centre (n=1). PARTICIPANTS:A convenience sample of 31 of 54 participants identified by local non-statutory agencies took part in a task group. All were aged between 40 years and 80 years, 21 were women and 10men participated. RESULTS:Despite the use of task group methodology, participants expressed limited understandings of dementia and confusion between proactive approaches. Nevertheless, they highlighted a range of potential benefits and limitations of proactive approaches and the ethical issues raised. There was a preference to embed risk assessment within routine health checks, which focused on achieving a healthier lifestyle, rather than specifically on dementia. Participants emphasised the need to ensure informed consent prior to use of proactive approaches and to provide appropriate support. They also suggested alternative approaches that could potentially facilitate the early detection of dementia or reduce risk at a population level. CONCLUSIONS:As international policy on dementia shifts towards a prevention agenda there is growing interest in identifying those at risk of developing dementia. This study provides useful insights into the acceptability of the use of such proactive approaches among the public. The introduction of proactive approaches to dementia identification raises complex practical and ethical issues, particularly in the context of low public understanding of dementia. The importance of better quality information about dementia (and the likelihood of developing dementia) and provision of psychological support for those undergoing risk assessment were highlighted.