Linda Birt

Member Checking A Tool to Enhance Trustworthiness or Merely a Nod to Validation

The trustworthiness of results is the bedrock of high quality qualitative research. Member checking, also known as participant or respondent validation, is a technique for exploring the credibility of results. Data or results are returned to participants to check for accuracy and resonance with their experiences. Member checking is often mentioned as one in a list of validation techniques. This simplistic reporting might not acknowledge the value of using the method, nor its juxtaposition with the interpretative stance of qualitative research. In this commentary, we critique how member checking has been used in published research, before describing and evaluating an innovative in-depth member checking technique, Synthesized Member Checking. The method was used in a study with patients diagnosed with melanoma. Synthesized Member Checking addresses the co-constructed nature of knowledge by providing participants with the opportunity to engage with, and add to, interview and interpreted data, several months after their semi-structured interview.

Responding to symptoms suggestive of lung cancer: a qualitative interview study

Background Late diagnosis of lung cancer can impact on survival rates. Patients delay seeking help for a number of reasons. This study explored symptom appraisal and help-seeking decisions among patients referred to specialist respiratory services with symptoms suggestive of lung cancer. Methods In-depth qualitative interviews with patients as soon as possible after referral, ideally before diagnosis and mainly within 10 weeks, explored factors impacting on their pathways prior to referral. Framework analysis, underpinned by the Model of Pathways to Treatment, was used to explore the data with particular focus on patients’ beliefs and experiences, disease factors and healthcare professional influences. Results 35 patients were interviewed (aged 41–88 years, 15 women, 17 with lung cancer). All described similar presenting symptoms and triggers to seek help. Appraisal of symptoms was influenced by whether they had a lung comorbidity; seriousness of symptoms was interpreted within the context of previous illness experiences. Help-seeking was triggered when: symptoms failed to respond as expected; there was an increased awareness of symptoms of lung cancer; the public nature of a cough meant others were able to endorse help-seeking. Almost half visited the general practitioner (GP) two or more times before referral; during this period they reinterpreted initial symptoms and appraised new symptoms. The meaning given to symptoms changed over time and many became increasingly concerned they may have lung cancer. The GP played a role in ensuring timely further help-seeking but often there was little guidance on how to monitor symptoms or when to reconsult. Conclusions Patients diagnosed with and without lung cancer had similar symptom pathways. Findings provide guidance for lung cancer awareness campaigns on the importance of social networks in endorsing patient help-seeking. The importance of appropriate advice, monitoring and safety-netting procedures by GPs for people presenting with symptoms suggestive of lung cancer is also highlighted.

‘This isn't what mine looked like’: a qualitative study of symptom appraisal and help seeking in people recently diagnosed with melanoma

Objective To explore symptom appraisal and help-seeking decisions among patients recently diagnosed with melanomas, and to compare experiences of people with ‘thinner’ (<1 mm) and ‘thicker’ (>2 mm) melanomas, as thickness at diagnosis is an important prognostic feature. Methods In-depth interviews with patients within 10 weeks of melanoma diagnosis explored the factors impacting on their pathways to diagnosis. Framework analysis, underpinned by the Model of Pathways to Treatment, was used to explore the data with particular focus on patients’ beliefs and experiences, disease factors, and healthcare professional (HCP) influences. Results 63 patients were interviewed (29–93 years, 31 women, 30 thicker melanomas). All described their skin changes using rich lay vocabulary. Many included unassuming features such as ‘just a little spot’ as well as common features of changes in size, colour and shape. There appeared to be subtly different patterns of symptoms: descriptions of vertical growth, bleeding, oozing and itch were features of thicker melanomas irrespective of pathological type. Appraisal was influenced by explanations such as normal life changes, prior beliefs and whether skin changes matched known melanoma descriptions. Most decisions to seek help were triggered by common factors such as advice from family and friends. 11 patients reported previous reassurance about their skin changes by a HCP, with little guidance on monitoring change or when it would be appropriate to re-consult. Conclusions Patients diagnosed with both thinner and thicker melanomas often did not initially recognise or interpret their skin changes as warning signs or prompts to seek timely medical attention. The findings provide guidance for melanoma awareness campaigns on more appropriate images, helpful descriptive language and the need to stress the often apparently innocuous nature of potentially serious skin changes. The importance of appropriate advice, monitoring and safety-netting procedures by HCPs for people presenting with skin changes is also highlighted.

Symptom appraisal and healthcare-seeking for symptoms suggestive of colorectal cancer: a qualitative study

Objectives Timely diagnosis of colorectal cancer is important to improve survival. This study explored symptom appraisal and help-seeking among patients referred to specialist services with symptoms of colorectal cancer. Design Qualitative in-depth interview study. Setting and participants Participants were recruited on referral to gastroenterology clinics (North East and East of England); interviews were conducted soon after referral. We purposively sampled participants to ensure a range of accounts in terms of age, sex, diagnosis and geographical location. Methods Data collection and analysis were underpinned by the Model of Pathways to Treatment. Framework analysis was used to explore the data within and across cases, focusing on patient beliefs and experiences, disease factors and healthcare influences. Results 40 participants were interviewed (aged 43–87 years, 17 women, 18 diagnosed with colorectal cancer). Patients diagnosed with and without colorectal cancer had similar symptom pathways. We found a range of interacting and often competing biopsychosocial, contextual and cultural influences on the way in which people recognised, interpreted and acted on their symptoms. People attempted to ‘maintain normality’ through finding benign explanations for their symptoms. Bodily changes were appraised within the context of usual bowel patterns, comorbidities and life events, and decisions to seek help were made in relation to expectations about the course of symptoms. The ‘private nature’ of colorectal cancer symptoms could affect both their identification and discussions with others including healthcare professionals. Within the context of the National Health Service, people needed to legitimise appropriate use of healthcare services and avoid being thought of as wasting doctors’ time. Conclusions Findings provide guidance for awareness campaigns on reducing stigma around appraising and discussing bowel movements, and the importance of intermittent and non-specific symptoms. Altering perceptions about the appropriate use of health services could have a beneficial effect on time to presentation.

Concerns, perceived need and competing priorities: a qualitative exploration of decision-making and non-participation in a population-based flexible sigmoidoscopy screening programme to prevent colorectal cancer

Objective Optimising uptake of colorectal cancer (CRC) screening is important to achieve projected health outcomes. Population-based screening by flexible sigmoidoscopy (FS) was introduced in England in 2013 (NHS Bowel scope screening). Little is known about reactions to the invitation to participate in FS screening, as offered within the context of the Bowel scope programme. We aimed to investigate responses to the screening invitation to inform understanding of decision-making, particularly in relation to non-participation in screening. Design Qualitative analysis of semistructured in-depth interviews and written accounts. Participants and setting People from 31 general practices in the North East and East of England invited to attend FS screening as part of NHS Bowel scope screening programme were sent invitations to take part in the study. We purposively sampled interviewees to ensure a range of accounts in terms of beliefs, screening attendance, sex and geographical location. Results 20 screeners and 25 non-screeners were interviewed. Written responses describing reasons for, and circumstances surrounding, non-participation from a further 28 non-screeners were included in the analysis. Thematic analysis identified a range of reactions to the screening invitation, decision-making processes and barriers to participation. These include a perceived or actual lack of need; inability to attend; anxiety and fear about bowel preparation, procedures or hospital; inability or reluctance to self-administer an enema; beliefs about low susceptibility to bowel cancer or treatment and understanding of harm and benefits. The strength, rather than presence, of concerns about the test and perceived need for reassurance were important in the decision to participate for screeners and non-screeners. Decision-making occurs within the context of previous experiences and day-to-day life. Conclusions Understanding the reasons for non-participation in FS screening can help inform strategies to improve uptake and may be transferable to other screening programmes.

A qualitative exploration of the use of calendar landmarking instruments in cancer symptom research

BackgroundLate diagnosis is considered to be a major factor contributing to poorer cancer survival rates in the UK. Interventions have focussed on the promotion of earlier diagnosis in patients with potential cancer symptoms. However, to assess the effectiveness of these interventions, the time from symptom onset to presentation needs to be reliably and accurately measured. This qualitative study explored the use of calendar landmarking instruments in cancer symptom research.MethodsWe performed a secondary analysis of transcripts of interviews using the calendar landmarking instrument, undertaken with patients who had either been diagnosed with cancer (n = 40, IRCO study, Western Australia), or who had symptoms suggestive of cancer (n = 38, SYMPTOM study, North East and Eastern England). We used constant comparison methods to identify use of the calendar landmarking instruments and the impact of their application.ResultsThe calendar landmarking instrument appeared to help many patients, either by acting as a prompt or helping to refine recall of events. A combination of personal (e.g. birthday) and national (e.g. Christmas) landmarks seemed to be the most effective. Calendar landmarking instruments appeared more useful where the time period between onset of symptoms and date of first consultation was less than three months. The interviewee’s age, gender and cancer type did not appear to influence whether or not the instrument facilitated recall, and there were no instances where the use of the instrument resulted in the disclosure of a new first symptom. Symptoms of similar chronic conditions could create difficulties when applying the instrument; it was difficult for these participants to characterise and disentangle their symptoms which prompted their decisions to seek help. Some participants tended to prefer to use their own, already personalised, diaries to assist in their recall of events.ConclusionsThis study is the first to describe the potential role of calendar landmarking instruments to support research interviews which explore symptoms and events along the cancer diagnostic pathway. The major challenge remains as to whether they actually improve accuracy of recall.

Patient drawings of their melanoma: A novel approach to understanding symptom perception and appraisal prior to health care

Objective: This pilot study investigated the use of patient drawings to explore patient experiences of symptoms of melanoma prior to health care use. Design: Patients (n = 63) with melanoma were interviewed within 10 weeks of diagnosis. Participants were asked to draw what their melanoma had looked like when they first noticed it, and to make additional drawings to depict changes as it developed. Main outcome measure: The size and features of the drawings were compared between participants and with clinical data (thickness of the melanoma; histological diameter; clinical photographs). Results: Eighty-four percent of participants were able to produce at least one drawing. This facilitated discussion of their lesion and recall of events on the pathway to diagnosis. Common features of the drawings related to the view, presence of shading, inclusion of sections and the shape and border of the lesion. There was potential for disparity between the details in awareness resources and the perceptions of patients. The drawings resembled the clinical photographs and the size of the drawings was positively associated with the histological diameter, but did not differ according to tumour thickness. Conclusion: Asking patients to make drawings of their melanoma appears to be an acceptable, inclusive, feasible and insightful methodological tool.

Understanding symptom appraisal and help-seeking in people with symptoms suggestive of pancreatic cancer: a qualitative study

Objective Pancreatic cancer has poor survival rates due to non-specific symptoms leading to later diagnosis. Understanding how patients interpret their symptoms could inform approaches to earlier diagnosis. This study sought to explore symptom appraisal and help-seeking among patients referred to secondary care for symptoms suggestive of pancreatic cancer. Design Qualitative analysis of semistructured in-depth interviews. Data were analysed iteratively and thematically, informed by the Model of Pathways to Treatment. Participants and setting Pancreatic cancer occurs rarely in younger adults, therefore patients aged ≥40 years were recruited from nine hospitals after being referred to hospital with symptoms suggestive of pancreatic cancer; all were participants in a cohort study. Interviews were conducted soon after referral, and where possible, before diagnosis. Results Twenty-six interviews were conducted (cancer n=13 (pancreas n=9, other intra-abdominal n=4), non-cancer conditions n=13; age range 48–84 years; 14 women). Time from first symptoms to first presentation to healthcare ranged from 1 day to 270 days, median 21 days. We identified three main themes. Initial symptom appraisal usually began with intermittent, non-specific symptoms such as tiredness or appetite changes, attributed to diet and lifestyle, existing gastrointestinal conditions or side effects of medication. Responses to initial symptom appraisal included changes in meal type or frequency, or self-medication. Symptom changes such as alterations in appetite and enjoyment of food or weight loss usually prompted further appraisal. Triggers to seek help included a change or worsening of symptoms, particularly pain, which was often a ‘tipping point’. Help-seeking was often encouraged by others. We found no differences in symptom appraisal and help-seeking between people diagnosed with cancer and those with other conditions. Conclusions Greater public and healthcare professional awareness of the combinations of subtle and intermittent symptoms, and their evolving nature, is needed to prompt timelier help-seeking and investigation among people with symptoms of pancreatic cancer.

Understanding symptom appraisal and help-seeking in people with symptoms suspicious of pancreatic cancer: a qualitative interview study

Special Issue: Abstracts of the Cancer and Primary Care Research International (Ca-PRI) Network 8th Annual Meeting, 20-22 May 2015, Denmark