ArticlesPatients' help-seeking experiences and delay in cancer presentation: a qualitative synthesis
Introduction
The shortening of delays in diagnosis has been an important part of a national strategy by the UK government to reduce cancer morbidity and mortality.1, 2 Many initiatives have focused on the reduction of organisational delays, which take place between a patient's first presentation of possible symptoms to doctors and the subsequent diagnosis and treatment. Yet the gap between patients noticing symptoms and seeking medical assessment3 also contributes to overall delay. Systematic reviews of delay in cancer diagnosis4, 5 have provided valuable evidence of the length of these periods and have helped to quantify patients' awareness of cancer symptoms and risk factors for delay, emphasising the failure to recognise the severity of symptoms as a particular problem.5 To reduce this delay of presentation, mechanisms underlying these risk factors need to be established. Qualitative research has been recognised as a legitimate way to obtain knowledge that might not be accessible by other methods6, 7 and to provide extensive data on how people interpret and act on their symptoms, but it is often criticised as being contextually specific and having little generalisability. Integration of findings from qualitative studies about cancer experiences has been suggested to develop effective health-care interventions.8 We undertook a qualitative synthesis of international research on cancer patients' experiences of help-seeking and explored why patients delay in presenting to a health professional by comparing published data for patients with different types of cancer.
Section snippets
Identification of published work
To find qualitative research is difficult;9, 10, 11 qualitative research is not indexed as well as quantitative research (eg, qualitative is not a MEDLINE MeSH term), is widely distributed, and is often catalogued in databases that are not well-known to medical researchers.11 We used a combination of strategies: extensive searches of electronic medical, sociological, and psychological databases (MEDLINE, EMBASE, PubMed, BIDS, IBSS, PsycINFO, SCI, SSCI) using explicit criteria; hand searching of
Results
We identified 32 original papers that met our inclusion criteria15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46 based on focus groups, interviews, and oral testimonies with patients and carers providing data for more than 775 individuals, of whom at least 712 were patients with more than 20 different types of cancer (table). 23 papers focused on one type of cancer, most commonly breast (11), testicular (four), and
Discussion
Our analysis showed that of the studies we identified, patients with different types of cancer and from different countries had similar help-seeking experiences. Main themes in delay in presentation were recognition and interpretation of symptoms, and fear of consultation (with respect to embarrassment and to the idea of cancer itself). The patient's gender and the sanctioning of help-seeking also affected help-seeking.
This synthesis of qualitative research allows the integration of findings
Glossary
- Qualitative research
- A range of approaches within the interpretive paradigm (eg, ethnography, case study research). Qualitative methods include in-depth interviews, observation, focus group interviews, and analysis of documents. The interpretive paradigm seeks to understand meanings and experience from the perspective of the people being studied.
- Qualitative synthesis
- The analysis and reinterpretation of research evidence from multiple interpretive studies, which unlike traditional or systematic
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