BackgroundWhile the evidence-base concerning the economic impact of cancer for patients and their families/carers has grown in recent years, there is little known about how emotional responses to cancer influence this economic impact. We investigated the economic costs of cancer in the context of patients’ emotions and how these both shaped the patient and family burden.MethodsHealth professionals from six hospitals invited patients diagnosed with colorectal cancer (ICD10 C18-C20) within the previous year to take part in the study. Semi-structured face-to-face interviews were conducted with patients and, where available, a family member. Interviews covered medical and non-medical costs incurred as a result of cancer and the impact of these on the lives of the patient and their family. Interviews were audio-recorded. Recordings were transcribed verbatim and these data were analysed qualitatively using thematic content analysis.ResultsTwenty-two patients with colorectal cancer (17 colon and 5 rectal; 14 women and 8 men) were interviewed; 6 were accompanied by a family member. Important cancer-related financial outlays included: travel and parking associated with hospital appointments; costs of procedures; increased household bills; and new clothing. Cancer impacted on employed individuals’ ability to work and depressed their income. The opportunity cost of informal care for carers/family members, especially immediately post-diagnosis, was a strong theme. All patients spoke of the emotional burden of colorectal cancer and described how this burden could lead to further costs for themselves and their families by limiting work and hindering their ability to efficiently manage their expenses. Some patients also spoke of how economic and emotional burdens could interact with each other. Support from employers, family/carers and the state/health services and patients’ own attitudes influenced this inter-relationship.ConclusionsThe economic impact of colorectal cancer on patients and their families is complex. This study suggests that the economic costs and the emotional impact of cancer are often related and can exacerbate each other, but that various factors can meditate this inter-relationship.
Objective To explore emotional responses, and predictors of negative reactions, among women undergoing human papillomavirus (HPV) tests in routine clinical practice.Design Exploratory qualitative interview study.Setting A large busy colposcopy clinic in a Dublin hospital.Sample Twenty-seven women who had had an HPV DNA test in the previous 6 months following one or more low-grade cytology tests or treatment for cervical intraepithelial neoplasia (CIN).Methods In-depth semi-structured interviews were conducted. Interview transcripts were analysed using a thematic approach (Framework Analysis).Main outcome measures Women's emotional responses and predictors of negative emotional reactions.Results For most women, having a test for high-risk HPV types generated little negative or positive emotional impact. Adverse emotional responses related to HPV infection rather than testing. Factors that influenced whether women experienced negative emotional responses were: concerns over abnormal cytology or diagnosis of CIN; HPV knowledge; awareness of HPV being sexually transmitted; awareness of HPV prevalence; and HPV information needs. Women's concerns about abnormal cytology/ CIN dominated all other issues.Conclusions These qualitative data suggest that in the context of follow up of abnormal cytology or treatment for CIN, the emotional impact of HPV testing may be modest: women's primary concerns at this time relate to abnormal cytology/CIN.
ObjectivesTesting for human papillomavirus (HPV) infection has recently been introduced into cervical screening programmes. We investigated (1) barriers to accessing and absorbing information and (2) factors that influence information needs among women undergoing HPV tests.MethodsIn-depth interviews were conducted with 27 women who had HPV tests performed in a colposcopy clinic as part of follow-up of low-grade abnormal cytology or post-treatment for cervical intraepithelial neoplasia (CIN). Interviews were transcribed verbatim, coded and analysed using Framework Analysis, to identify main themes and sub-themes.ResultsAmong these women, barriers to accessing and absorbing HPV information were: being overwhelmed with information; context of the HPV test; colposcopy clinic experience(s); women's perceptions of medical professionals’ behaviours and attitudes, and information available on the Internet. Factors influencing women's HPV information needs were: concerns surrounding abnormal cytology or diagnosis of CIN; amount of information provided about HPV; awareness HPV is sexually transmitted; previous negative health care experience(s); and the HPV test in relation to other life events. The timing of delivery of HPV information was key to women absorbing or remembering the information given; it was important that information was given in stages rather than altogether.ConclusionsIn women undergoing HPV testing during follow-up, the amount and timing of delivery of HPV information requires careful consideration. Significant barriers exist to accessing and absorbing HPV information which, unless addressed, could have serious implications in terms of women's comprehension of HPV tests. Given the expanding use of HPV testing within cervical screening, further research on HPV-related information issues is needed.
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