Review: delays in help seeking for cancer symptoms related to recognition and interpretation of symptoms and fear of consultation and were affected by gender and sanctioning of help seeking
Q What are patients’ experiences of recognising symptoms of cancer and seeking help?
Medline, EMBASE/Excerpta Medica, PubMed, BIDS, International Bibliography of the Social Sciences, PsycINFO, Science Citation Index, and Social Sciences Citation Index; hand searches of key journals; and reference lists of identified studies.
STUDY SELECTION AND ASSESSMENT
English language papers published in peer reviewed journals from 1985 to July 2004 that reported the findings of qualitative research (qualitative data collection and text based or interpretive analysis) on the help seeking experiences of adult patients with cancer, from first onset of symptoms to first medical consultation. Exclusion criteria were studies of screening services and public knowledge of cancer symptoms. Meta-ethnography was used to synthesise the research. 2 researchers systematically read the papers and recorded key concepts and contextual details. Concepts were explored by reciprocal translation (identification of convergent or divergent cases across studies). Second order constructs (interpretations by the authors of the individual studies) and third order constructs (new interpretations beyond those offered in individual studies) were identified.
32 original papers were included in the analysis (data on ⩾775 patients and carers, of which ⩾712 were patients with >20 types of cancers). The synthesis identified 2 second order constructs (recognition and interpretation of symptoms and fear) and 2 third order constructs (patient gender and sanctioning). Recognition and interpretation of symptoms. Factors that delayed attribution of symptoms to illness included vague or mild symptoms associated with common ailments (eg, menopause, stress, or indigestion); absence of pain or lump; belief that symptoms would go away; intermittent symptoms; lack of awareness of cancer symptoms or risk; or previous benign diagnosis for symptoms. Factors that facilitated attribution of symptoms to illness included specific, well known symptoms (eg, lump); symptoms that worsened or did not go away; new symptoms (eg, pain); severe symptoms (eg, seizure); symptoms affecting everyday life; knowledge of cancer symptoms and awareness of risk; and discussion of symptoms with family and friends. Fear. After patients recognised symptoms, fear was often a barrier to help seeking. Fear of embarrassment related to being seen as a time waster or neurotic; family perceptions that symptoms were psychosomatic; symptoms in sensitive or sexual areas; and men’s perception that help seeking was “unmasculine.” Fear of cancer related to perceptions of cancer as a fatal incurable disease with serious and painful symptoms; previous negative experiences of cancer; fear of unpleasant treatment; loss of sexuality after treatment; and shame arising from beliefs that cancer was associated with uncleanliness. Patient gender affected help seeking in several ways. Men saw help seeking as “unmasculine” and did not want to appear neurotic. They felt that help seeking was easier for women because they had more contact with health services. Women more often cited family and work as priorities competing with their own health. Sanctioning affected help seeking in several ways. Help seeking sanctioned directly or indirectly by family forced contact with health professionals. Patients legitimised help seeking by ignoring symptoms until they interfered with life (specifically work) or reached a crisis point. Patients also used healthcare consultations for other health problems as opportunities to bring up symptoms, as well as knowledge from textbooks or the media.
Patients with different types of cancer had similar initial help seeking experiences. Delays in help seeking related to recognition and interpretation of symptoms and fear of consultation. Patient gender and sanctioning of help seeking also affected help seeking.
- A Fuchsia Howard, RN, MSN
Qualitative synthesis techniques aim to achieve greater understanding and a level of theoretical and conceptual development beyond that possible in a single empirical study.1 The synthesis of 32 studies of men and women with various types of cancer and from diverse international settings enabled Smith et al to compare findings across individual studies and consider similarities and differences based on cancer type, sex, and country. As a result, the authors provide a timely account of current knowledge about cancer symptom recognition and interpretation gleaned from qualitative research.
The synthesis provides important insights into the complex process of recognising cancer symptoms as abnormal, attributing symptoms to cancer, assessing the seriousness of the condition, and seeking medical assessment. Based on the identification of factors that delay and trigger the attribution of cancer symptoms to illness, healthcare practitioners can enhance the effectiveness of health education by incorporating and building on this knowledge. By highlighting that recognition and interpretation of cancer symptoms are not always sufficient triggers to seek medical attention, the authors extend our understanding of how cancer symptom recognition and interpretation are influenced by fears of consultation related to embarrassment and cancer itself; this is consistent with cancer related stigma reported in other studies.2 Addressing cancer related stigma requires public education to dispel myths about cancer, extreme sensitivity in clinical practice, and identification of ways of promoting and delivering cancer screening that decrease patients’ anxieties. The findings also suggest that healthcare practitioners should consider their patient’s gender identity as well as who sanctions health seeking behaviour, and provide appropriate and tailored information and services in innovative ways.
For correspondence: Dr L K Smith, Department of Health Sciences, University of Leicester, Leicester, UK.
Source of funding: no external funding.