Dataset Information

Awareness of the Signs, Symptoms, and Risk Factors of Cancer and the Barriers to Seeking Help in the UK: Comparison of Survey Data Collected Online and Face-to-Face.

ABSTRACT: BACKGROUND:Cancer is the second leading cause of death globally, causing an estimated 9.6 million deaths in 2018. Low cancer symptom awareness has been associated with poor cancer survival for all cancers combined. The Cancer Awareness Measure (CAM) is a validated, face-to-face survey used since 2008 to measure the UK public's awareness of the symptoms and risk factors of cancer as well as the barriers to seeking help. OBJECTIVE:The aim of this study is to explore whether online data collection can produce a representative sample of the UK population, compare awareness of cancer signs and risk factors and the barriers to seeking help between data collected online and face-to-face, and examine the relationships between awareness and demographic variables. METHODS:Differences in awareness of cancer signs, symptoms, and risk factors among samples were explored while adjusting for demographic differences (age, gender, ethnicity, educational level, marital status, and country of residence) to distinguish the effect of data collection method. Multivariate logistic regression models were used to calculate adjusted odds ratios for recall and recognition of signs and symptoms, risk factors, and barriers to seeking help. RESULTS:A total of 4075 participants completed the CAM, 20% (n=819) via face-to-face interviews and 80% online (n=3256; agency A: n=1190; agency B: n=2066). Comparisons of data collected using face-to-face interviews and online surveys revealed minor differences between samples. Both methods provided representative samples of the UK population with slight differences in awareness of signs, symptoms, and risk factors and frequency of help-seeking barriers reported. CONCLUSIONS:These findings support a move to online data collection for the CAM. The flexibility afforded will enable the CAM to explore a wider range of issues related to the prevention, early diagnosis, and treatment of cancer.

SUBMITTER: Connor K

PROVIDER: S-EPMC6996748 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Awareness of the Signs, Symptoms, and Risk Factors of Cancer and the Barriers to Seeking Help in the UK: Comparison of Survey Data Collected Online and Face-to-Face.

Connor Katie K Hudson Briony B Power Emily E

JMIR cancer 20200117 1

<h4>Background</h4>Cancer is the second leading cause of death globally, causing an estimated 9.6 million deaths in 2018. Low cancer symptom awareness has been associated with poor cancer survival for all cancers combined. The Cancer Awareness Measure (CAM) is a validated, face-to-face survey used since 2008 to measure the UK public's awareness of the symptoms and risk factors of cancer as well as the barriers to seeking help.<h4>Objective</h4>The aim of this study is to explore whether online d ...[more]

PMID: 31951219

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Project description:AIM:To develop a questionnaire to measure quantitatively barriers and facilitators to women's disclosure of perinatal mental health problems in UK primary care. To pilot and evaluate the questionnaire for content validity and internal consistency. BACKGROUND:Around 15% of women develop a mental illness in the perinatal period, such as depression, anxiety or post-traumatic stress disorder. In the United Kingdom, 90% of these women will be cared for in primary care, yet currently in as many as 50% of cases, no discussion of this issue takes place. One reason for this is that women experience barriers to disclosing symptoms of perinatal mental illness in primary care. These have previously been explored qualitatively, but no tool currently exists with which to measure these barriers quantitatively. METHODS:Questionnaire items, drawn from qualitative literature and accounts of women's experiences, were identified, refined iteratively and arranged in themes. The questionnaire was piloted using cognitive debriefing interviews to establish content validity. Women completed a refined version online. Responses were analysed using descriptive statistics. Internal consistency of subscales was calculated using Cronbach's alpha. FINDINGS:Cognitive debriefing interviews with five women showed the majority of questionnaire items were relevant, appropriate and easy to understand. The final questionnaire was completed by 71 women, and the majority of subscales had good internal consistency. The barrier scoring most highly was fear and stigma, followed by willingness to seek help and logistics of attending an appointment. Family/partner support and general practitioners' (GPs) reaction were the lowest scoring barriers. Factors facilitating disclosure were GPs being empathetic and non-judgemental and listening during discussions. In the future, this questionnaire can be used to examine which barriers are most important for particular groups of women. This may enable the development of strategies to improve acknowledgement and discussion, and prevent under-recognition and under-treatment, of perinatal mental health problems in primary care.

Project description:BackgroundWomen's pelvic health is a globally important subject, included in international and United Kingdom health policies, emphasising the importance of improving information and access to pelvic health services. Consequences of pelvic symptoms are intimate, personal, and varied, often causing embarrassment and shame, affecting women's quality of life and wellbeing.AimTo understand the experience of seeking healthcare for stigmatised pelvic health symptoms by synthesising all types of published primary research and mapping the results to behavioural theory, to identify potential targets for intervention.MethodsSystematic search of MEDLINE, CINAHL, PsycINFO, SocINDEX, PubMED databases, CDSR and CENTRAL registers, from inception to May 2023 for all types of research capturing women's views and experiences of seeking help with stigmatised urogenital and bowel symptoms. Studies only reporting prevalence, predictors of help-seeking, non-health related help-seeking, or written in languages other than English, German, French, Spanish and Swedish were excluded. Reference checking and forward citation searching for all included studies was performed. A results-based synthesis approach was used to integrate quantitative and qualitative data. Themes were mapped to the Common-Sense model and Candidacy framework. The Mixed Methods Appraisal Tool was used for critical appraisal. Grading of Recommendations Assessment, Development and Evaluation - Confidence in Evidence from Reviews of Qualitative research for assessing certainty of review findings.Results86 studies representing over 20,000 women from 24 high income countries were included. Confidence was high that barriers to help-seeking were similar across all study types and pelvic symptoms: stigma, lack of knowledge, women's perception that clinicians dismissed their symptoms, and associated normalising and deprioritising of low bother symptoms. Supportive clinicians and increased knowledge were key facilitators.ConclusionsUsing the Common-Sense Model to explore women's help-seeking behaviour with stigmatised pelvic symptoms reveals problems with cognitive representation of symptom identity, emotional representations of embarrassment and shame, and a subjective norm that women believe their symptoms will be trivialised by clinicians. Together these barriers frustrate women's identification of their candidacy for healthcare. Addressing these issues through behavioural change interventions for women and clinicians, will help to achieve universal access to pelvic healthcare services (United Nations Sustainable Development Goal 3.7).Systematic review registrationPROSPERO CRD42021256956.

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Project description:BackgroundYoung people frequently make use of the internet as part of their day-to-day activities, and this has extended to their help-seeking behavior. Offline help-seeking is known to be impeded by a number of barriers including stigma and a preference for self-reliance. Online help-seeking may offer an additional domain where young people can seek help for mental health difficulties without being encumbered by these same barriers.ObjectiveThe objective of this systematic literature review was to examine young peoples' online help-seeking behaviors for mental health concerns. It aimed to summarize young peoples' experiences and identify benefits and limitations of online help-seeking for this age group. It also examined the theoretical perspectives that have been applied to understand online help-seeking.MethodsA systematic review of peer-reviewed research papers from the following major electronic databases was conducted: PsycINFO, Cumulative Index of Nursing and Allied Health Literature, PubMed, Cochrane Library, Association for Computing Machinery Digital Library, and Institute of Electrical and Electronics Engineers Xplore. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed. The search was conducted in August 2017. The narrative synthesis approach to reviews was used to analyze the existing evidence to answer the review questions.ResultsOverall, 28 studies were included. The most common method of data collection was through the use of surveys. Study quality was moderate to strong. Text-based query via an internet search engine was the most commonly identified help-seeking approach. Social media, government or charity websites, live chat, instant messaging, and online communities were also used. Key benefits included anonymity and privacy, immediacy, ease of access, inclusivity, the ability to connect with others and share experiences, and a greater sense of control over the help-seeking journey. Online help-seeking has the potential to meet the needs of those with a preference for self-reliance or act as a gateway to further help-seeking. Barriers to help-seeking included a lack of mental health literacy, concerns about privacy and confidentiality, and uncertainty about the trustworthiness of online resources. Until now, there has been limited development and use of theoretical models to guide research on online help-seeking.ConclusionsApproaches to improving help-seeking by young people should consider the role of the internet and online resources as an adjunct to offline help-seeking. This review identifies opportunities and challenges in this space. It highlights the limited use of theoretical frameworks to help conceptualize online help-seeking. Self-determination theory and the help-seeking model provide promising starting points for the development of online help-seeking theories. This review discusses the use of these theories to conceptualize online help-seeking and identify key motivations and tensions that may arise when young people seek help online.

Dataset Information

Awareness of the Signs, Symptoms, and Risk Factors of Cancer and the Barriers to Seeking Help in the UK: Comparison of Survey Data Collected Online and Face-to-Face.

Publications

Awareness of the Signs, Symptoms, and Risk Factors of Cancer and the Barriers to Seeking Help in the UK: Comparison of Survey Data Collected Online and Face-to-Face.

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