Communicating health decisions: an analysis of messages posted to online prostate cancer forums

Background  Experiential websites such as message forums and blogs allow Prostate Cancer (PCa) patients to communicate their health decisions to peers. The issues surrounding this form of indirect involvement in public health are little understood. Objective  This paper explores the types of decision-making processes that people are exposed to on PCa online message boards. The kinds of treatment choices patients are making and the reports of their decision-making processes to peers through an online environment are examined in the context of the Heuristic Systematic Model. Method  Messages about treatment decision making were collected from four PCa websites. In total, 137 messages were selected from blogs and online forums and their decision-making processes coded. Results  Men looking online for information about treatment options for PCa are exposed to a range of decision-making processes. Just under half (49.6%) of the messages reported non-systematic decision processes, with deferral to the doctor and proof of cancer removal being the most common. For systematic processing (36.5%), messages most commonly considered treatment outcomes and side-effects. Processes did not vary between the blogs and online forums. Discussion and conclusion  Compared to previous studies far fewer messages reported non-systematic decision processes and only a small number of messages reflected lay beliefs or misbeliefs about PCa treatment. Implications for men and their clinicians of seeking health information online are discussed

How do people with asthma use Internet sites containing patient experiences?

Objective: To understand how people engage with websites containing patient authored accounts of health and illness. To examine how people with asthma navigate their way through this information and make use of the patient experiences they find. Methods: Twenty-nine patients with diagnoses ranging from mild to severe asthma were shown a range of websites, some containing patient experiences, and selected two sites to explore further. They discussed their choices in a series of focus groups and interviews. Results: Participants were influenced initially by the design quality of the sites and were subsequently drawn to websites containing patient experiences but only when contributions were from similar people offering ‘relevant stories’. The experiences reminded participants of the serious nature of the disease, provided new insights into the condition and an opportunity to reflect upon the role of the disease in their lives. Conclusion: For people with asthma websites containing other patients’ personal experiences can serve as a useful information resource, refresh their knowledge and ensure their health behaviours are appropriate and up-to-date. Practice Implications: Health professionals should consider referring asthma patients to appropriate websites whilst being aware that online experiences are most engaging when they resonate with the participants own situation

Living with COVID-19 in the community during the first wave of the pandemic: Lessons from patients for healthcare providers and policy makers

This qualitative descriptive study explores patients’ experiences of living with COVID-19, in the community, during the early stages of the pandemic. Between October 2020 and April 2021, fifteen semi-structured, video-recorded interviews were conducted, via Zoom, with participants in five Canadian provinces. Participants self-identified as having had a confirmed or suspected case of COVID-19. The constant comparative method was used to produce a thematic analysis of findings. Key findings include 1) PCR tests were not widely available in Canada, during the first wave, so many participants lacked a confirmed diagnosis and, subsequently, encountered challenges accessing specialist medical care; 2) Rapidly changing protocols around testing also impacted return to work as employers’ requirements were sometimes misaligned with public health guidelines; 3) Participants often found public health measures to be illogical, inconsistent, or sub-optimally implemented, and frequently perceived them as politically motivated rather than evidence-based; 4) some individuals with persistent symptoms had difficulty gaining acknowledgement and support for what is now more widely acknowledged to be long-COVID; and 5) The view that healthcare providers need a more nuanced approach to patients who lack a confirmed diagnosis or present with hard-to-explain symptoms was widely shared. There is the need for greater responsiveness to the lived experiences of patients with COVID-19, especially those with persistent symptoms, in developing clinical pathways and social supports. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

Living in a paradox--women's experiences of body and life-world after meningioma surgery

Aims.  The aims of the study were to describe how persons who have undergone benign meningioma surgery experience their body and life-world and to illuminate the meaning of the illness, operation and recovery. Background.  Meningioma, which is often benign, is the most commonly diagnosed brain tumour. Studies have shown that persons with meningioma tend to be more psychologically affected than persons with other brain tumours. To our knowledge, no previous studies have focused on the life-world or body experience of these persons. Method.  Narrative interviews with seven women conducted over a 6-month period (2008–2009) were analyzed using a phenomenological hermeneutical method. Findings.  Four themes were identified: In between double threats: the tumour and operation: the participants seemed to perceive a paradox in the sense that the tumour was both benign and threatening and the surgery both curing and risky; the wound as an open gate: the wound is visibly healed, but perceived as unhealed; the suffering body overflows life: the participants were prevented from regaining their body, feeling fragile and oversensitive to impressions; and the need to be embraced by attention: taking the participants’ needs seriously facilitated understanding of the diagnosis. Conclusion.  The participants in this study described emotional distress when recovering from meningioma surgery. It is essential for nurses to be aware of the various meanings people ascribe to events that disrupt their lives and the transition process in connection with meningioma treatment

Systematic techniques for assisting recruitment to trials (START): study protocol for embedded, randomized controlled trials

BACKGROUND: Randomized controlled trials play a central role in evidence-based practice, but recruitment of participants, and retention of them once in the trial, is challenging. Moreover, there is a dearth of evidence that research teams can use to inform the development of their recruitment and retention strategies. As with other healthcare initiatives, the fairest test of the effectiveness of a recruitment strategy is a trial comparing alternatives, which for recruitment would mean embedding a recruitment trial within an ongoing host trial. Systematic reviews indicate that such studies are rare. Embedded trials are largely delivered in an ad hoc way, with interventions almost always developed in isolation and tested in the context of a single host trial, limiting their ability to contribute to a body of evidence with regard to a single recruitment intervention and to researchers working in different contexts. METHODS/DESIGN: The Systematic Techniques for Assisting Recruitment to Trials (START) program is funded by the United Kingdom Medical Research Council (MRC) Methodology Research Programme to support the routine adoption of embedded trials to test standardized recruitment interventions across ongoing host trials. To achieve this aim, the program involves three interrelated work packages: (1) methodology - to develop guidelines for the design, analysis and reporting of embedded recruitment studies; (2) interventions - to develop effective and useful recruitment interventions; and (3) implementation - to recruit host trials and test interventions through embedded studies. DISCUSSION: Successful completion of the START program will provide a model for a platform for the wider trials community to use to evaluate recruitment interventions or, potentially, other types of intervention linked to trial conduct. It will also increase the evidence base for two types of recruitment intervention. TRIAL REGISTRATION: The START protocol covers the methodology for embedded trials. Each embedded trial is registered separately or as a substudy of the host trial

Information gaps for patients requiring craniotomy for benign brain lesion: a qualitative study

Doctor–patient communication in the setting of a life-threatening illness poses considerable challenges. This study aimed to determine the information needs of a subset of neurosurgical patients. Qualitative case study methodology was used. Twenty-five semi-structured interviews were conducted with ambulatory adult patients who had undergone surgery for a benign brain tumor, arteriovenous malformation, or unruptured aneurysm. Interviews were digitally audio recorded and transcribed, and the data subjected to thematic analysis. Six overarching themes emerged from the data: (1) the amount of information patients want varies; (2) the type of information needed is not limited to information about treatment options and risks; (3) patients engage in independent information seeking for a variety of reasons; (4) patients consider compassion from their surgeon as important; (5) direct communication with the surgeon post-operatively is very important; and (6) patients’ information needs are greatest post-operatively. Many patients felt that the amount and quality of information they received was not sufficient, particularly regarding post-operative recovery and long-term life issues, leading many to do their own research. The findings from this study emphasize the need for improved communication with patients so they can participate meaningfully in choices about their treatment, give a truly informed consent, and effectively participate in their own recovery

Bowel cancer screening in England: a qualitative study of GPs' attitudes and information needs

BACKGROUND: The National Health Service Bowel Cancer Screening Programme is to be introduced in England during 2006. General Practitioners are a potentially important point of contact for participants throughout the screening process. The aims of the study were to examine GPs' attitudes and information needs with regard to bowel cancer screening, with a view to developing an information pack for primary care teams that will be circulated prior to the introduction of the programme. METHODS: 32 GPs participated in semi-structured telephone interviews. 18 of these had participated in the English Bowel Screening Pilot, and 14 had not. Interviews covered attitudes towards the introduction of the Bowel Cancer Screening Programme, expected or actual increases in workload, confidence in promoting informed choice, and preferences for receiving information about the programme. RESULTS: GPs in the study were generally positive about the introduction of the Bowel Cancer Screening Programme. A number of concerns were identified by GPs who had not taken part in the pilot programme, particularly relating to patient welfare, patient participation, and increased workload. GPs who had taken part in the pilot reported holding similar concerns prior to their involvement. However, in many cases these concerns were not confirmed through GPs experiences with the pilot. A number of specific information needs were identified by GPs to enable them to provide a supportive role to participants in the programme. CONCLUSION: The study has found considerable GP support for the introduction of the new Bowel Cancer Screening Programme. Nonetheless, GPs hold some significant reservations regarding the programme. It is important that the information needs of GPs and other members of the primary care team are addressed prior to the roll-out of the programme so they are equipped to promote informed choice and provide support to patients who consult them with queries regarding screening