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OBJECTIVE: To identify outcomes relevant to women with lived experience of pre-eclampsia. DESIGN: Qualitative interview study. SETTING: A national study conducted in the United Kingdom. SAMPLE: Purposive sample of women with lived experience of pre-eclampsia. METHODS: Thematic analysis of qualitative interview transcripts. RESULTS: Thirty women with lived experience of pre-eclampsia were interviewed. Thematic analysis identified 71 different treatment outcomes. Fifty-nine of these had been previously reported by pre-eclampsia trials. Outcomes related to maternal and neonatal morbidity, commonly reported by pre-eclampsia trials, were frequently discussed by women with lived experience of pre-eclampsia. Twelve outcomes had not been previously reported by pre-eclampsia trials. When compared with published research, it was evident that the outlook of women with lived experience of pre-eclampsia was broader. They considered pre-eclampsia in relation to the 'whole' person and attached special significance to outcomes relating to emotional wellbeing and the future health, development and wellbeing of their offspring. CONCLUSIONS: Selecting, collecting and reporting outcomes relevant to women with pre-eclampsia should ensure that future pre-eclampsia research has the necessary reach and relevance to inform clinical practice. Future core outcome set development studies should use qualitative research methods to ensure that the long list of potential core outcomes holds relevance to patients. TWEETABLE ABSTRACT: What do women want? A national study identifies key treatment outcomes for women with pre-eclampsia. Next step: @coreoutcomes for #preeclampsia @NIHR_DC.

© 2019 Royal College of Obstetricians and Gynaecologists Objective: To quantify the effect of different methodological decisions on the identification of potential core outcomes to inform the development of recommendations for future core coutcome set developers. Design: Mixed methods study. Setting: A core outcome set for pre-eclampsia was used as an exemplar. Sample: A long list of potential core outcomes was developed by undertaking a systematic review of pre-eclampsia trials and performing a thematic analysis of in-depth patient interviews. Methods: Specific methods used to generate long lists of potential core outcomes were evaluated. Results: Different methodological decisions had a substantial impact on the identification of potential core outcomes. Extracting outcomes from published pre-eclampsia trials was an effective way of identifying 48 maternal, eight fetal, 25 neonatal outcomes, and eight patient-reported outcomes. Limiting the extraction of outcomes to primary outcomes or outcomes commonly reported in pre-eclampsia trials reduced the number and diversity of potential core outcomes identified. Thematic analysis of in-depth patient interviews ensured an additional five patient reported outcomes and six outcomes related to future child health were identified. Conclusions: Future core outcome set developers should use quantitative and qualitative methods when developing a long list of potential core outcomes. Tweetable abstract: @OfficialNIHR research published in @BJOGtweets informs new recommendations for future @coreoutcomes developers.

Objectives To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms. Design Cross-country comparison of Denmark, England, and Sweden with qualitative analysis of in-depth interview accounts of the pre-diagnostic process in lung or bowel cancer. Participants 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in the six months before interview. Setting Participants recruited through primary and secondary care, social media, and word-of-mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants’ homes. Results Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries participants described difficulty deciding if and when to consult, highlighting concerns about access to GP appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) Situations where the participant left the primary care consultation with a plan of action about what should happen next. (2) Participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden. Conclusion We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance, and the inefficiency and distress of multiple consultations could be reduced.

BACKGROUND: Financial worries may add to the stress experienced by patients and their families, but they are often not discussed with health professionals. People with lung cancer usually have to give up work, and many are terminally ill. AIM: To explore the financial concerns, perceptions and experiences of claiming benefits of people with lung cancer. DESIGN OF STUDY: Qualitative study using narrative interviews. SETTING: United Kingdom. METHOD: Interviews with a maximum variation sample of 45 people with lung cancer, recruited through general practitioners, consultants, nurses and support groups. RESULTS: Some people did not know that they could claim financial benefits, others found claim forms complicated, or were unaware that they had no legal right for important allowances to be backdated. Some people had to 'struggle' to obtain much needed benefits to which they were entitled. Patients below retirement age said that they would prefer to be working, and many were shocked by how hard it was to obtain the information needed to make claims. There was some evidence that even those who are seriously ill, and life-time tax payers, feel stigma in claiming financial help. Nurses, doctors and other patients sometimes offered valuable guidance, but many patients did not receive timely advice. The special social security rules (and DS1500 report form), which might have allowed them to claim benefits more rapidly than usual and at a higher rate, were not always understood. CONCLUSION: Many reasons were found as to why people with lung cancer have difficulty getting the benefits that they are entitled to. Hospital and primary care staff who handle the issue sensitively and help set claims in motion provide a valuable service that should be replicated throughout the National Health Service.

This article looks at how patients with pancreatic cancer use the Internet, and considers its potential negative effects for people with a life threatening illness. We designed a qualitative study using semi-structured interviews collected by maximum variation sampling. Respondents were recruited from all over the UK in 2009/10. We interviewed 32 people with pancreatic cancer and eight relatives/carers of people who had recently died of pancreatic cancer. In contrast to a similar study we undertook in 2004, we found that the people interviewed in 2009/10 talked about using the Internet for health information as if it were a routine and unremarkable part of life. Patients gave few examples of harm from using the Internet, or of damage caused to their relationships with health professionals. We also found that patients and family carers were using a strategy to handle alarming information found online, with patients asking partners and family to filter what they found. In conclusion, concerns about serious negative effects of using the Internet for health information may be ill-founded, even when the Internet is used by patients with serious life threatening illness. Clinicians may worry that people will find unwanted or contradictory information, but it is probably counter-productive to try to steer people away from the web. Similarly, policy makers have focused on regulating the factual content of information on the web, but we found that it was the consequences of stumbling on factually correct, yet unwelcome, information that concerned the patients and their families in this study. Good practice guidelines and quality markers for health information may need to pay more attention to website design and user routing as well as factual content. © 2012 Policy Studies Organization.

Background Colorectal cancer is the third most common cancer in the UK. Patients with colorectal cancer spend most of their time in the community, but the role of primary care in their management and follow-up is unclear. Aim To explore colorectal cancer patients9 experiences of psychosocial problems and their management in primary and specialist care. Design and setting Longitudinal qualitative study of participants recruited from three hospitals in the west of Scotland and interviewed in their own homes. Method In-depth interviews with 24 participants with a new diagnosis of colorectal cancer, and then follow-up interviews 12 months later. Results Participants9 needs following a diagnosis for colorectal cancer included physical, psychological, and social issues. GPs played a key role in diagnosis, after which they were less involved. Participants valued GPs making unsolicited contact and offering support. Participants described being well supported by clinical nurse specialists who are expert in the illness, and who provide continuity of care and psychological support. A year after diagnosis, when there was less contact with GPs and clinical nurse specialists, participants still faced challenges associated with the ongoing impact of colorectal cancer Conclusion While some patients enjoyed straightforward recoveries from surgery, others experienced longer-term implications from their disease and treatment, particularly bowel-function issues, fatigue, anxiety, and sexual problems. The potential for primary care to contribute more to the ongoing care of colorectal cancer patients was identified.

Item does not contain fulltext OBJECTIVE: to describe men's and women's experiences of deciding whether to tell people in their social network, including their children, about their pregnancy loss following a termination for fetal abnormality. DESIGN: secondary analysis of qualitative narrative interview data informed by a critical realist approach. SETTING: respondents were recruited throughout the United Kingdom and interviewed at home between 2004 and 2005. PARTICIPANTS: twenty-eight women and nine men who had ended a pregnancy diagnosed with a fetal abnormality and who talked about disclosing or not disclosing the termination to others. FINDINGS: few respondents reported having any advice or information about whether or how to disclose their termination. None said they completely concealed their decision from adults in their social network; most said they disclosed selectively, telling close friends and family they had terminated and acquaintances they had miscarried. Most respondents reported telling their young children that the baby had died but did not reveal that they had chosen to end the pregnancy. A minority had not told their existing offspring about the pregnancy loss. Common reasons given for (partially) concealing a termination were: guilt over the decision; to avoid being judged; and to protect other people's feelings. Common reasons for disclosure were: others knew of the pregnancy; needing time off work; needing practical help and/or emotional support during diagnosis and termination; and wanting recognition of their loss. Positive consequences of disclosure were said to be getting more support and less criticism than expected; negative consequences included not getting the anticipated support and empathy; and encountering disapproval. Some respondents felt that concealing their pregnancy loss from their children had resulted in their confusion over the cause of their parents' distress. Some men said they found it hard to access emotional support from their social networks because of expectations about how men 'should' deal with emotions. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: midwives have to make difficult judgements about what, how and when to provide information when trying to support and advise parents who have ended a pregnancy due to fetal abnormality. Further education and training in this area could be of benefit. Midwives could signpost parents to existing sources of advice around disclosure, taking into account parents' individual preferences, help parents to consider the potential implications of disclosure and concealment and different ways of disclosing. They could also recommend alternative sources of emotional support, bearing in mind that men in particular may find it harder to access support from their social networks.

OBJECTIVE: Initial analysis of an interview study with patients about their experiences of lymphoma identified a strong emergent theme suggesting people were surprised to receive good care in the UK National Health Service. This qualitative analysis helps illuminate the disparity between public perceptions of NHS care and individual experiences. PARTICIPANTS AND SETTING: Forty-one women and men with lymphoma were interviewed at home by an academic social scientist; nine who had had all their treatment before 1997 were excluded from this analysis. DESIGN: Initial qualitative thematic analysis used constant comparison and axial coding. Using narrative analytic methods, we explored how the accounts of positive experiences were structured and framed as well as what was said. RESULTS: Every person we interviewed described positive experiences of the NHS. These included the skills and humanity of the specialist staff involved in their care, the team work, the organization of care and communication and information. However, these positive experiences were often framed as personal good fortune rather than an indication that a high standard might be expected of NHS cancer care. Participants' accounts also suggest a discrepancy through the use of framing devices that imply that less professional, kind and caring treatment might be expected. CONCLUSION: People may be able to maintain the apparently contradictory opinions that the NHS is not very good, even if their own experience of care is excellent, if they construct their own experience as 'lucky'. Health professionals could help by reassuring patients with a more positive, realistic expectation of specialist care.

This thesis maps the growth of the use of internet technologies in randomised controlled trials in health care and public health, and explores the methodological and ethical issues that arise from their use from the perspective of researchers and participants. Online clinical trials are growing in number, and claim to offer benefits for researchers and participants, providing solutions to some of the inherent problems associated with traditional trials. However, little is known about how many internet-based trials have been conducted, what methodological research has been undertaken, or what impact the new technologies might have on researcher or participant experience. The thesis followed a step-by-step approach, using information science, research synthesis, and qualitative methods. The creation of a database of internet-based clinical trials established that they have grown rapidly in number, use internet technologies primarily to deliver an intervention, predominantly in behavioural, mental health, or life-style public health settings. A two-stage systematic review, comprising a descriptive map and a qualitative synthesis, established what is known about the methods, conduct or participant experience in internet-based trials. A qualitative primary study was then carried out, based on the findings of the review, to further explore the views, attitudes and experiences of researchers, participants and the public, into the motivations, benefits or barriers to taking part in internet-based clinical trials. Themes emerging from the research suggest complex interactions between design and technology, particularly in the area of participant characteristics and choice; convenience versus intrusion; impact of time and place; the pace of change and impact of societal changes in the use of technology. A range of ethical considerations emerged, including the nature of informed consent, ethical approval, and the need for a systematic approach to patient and public involvement. Recommendations are made to help inform and improve research practice in the digital age.