"I wanna live and not think about the future" what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study.

BACKGROUND: Little is known about how people with multiple sclerosis (MS) and their families comprehend advance care planning (ACP) and its relevance in their lives. AIM: To explore under what situations, with whom, how, and why do people with MS and their families engage in ACP. METHODS: We conducted a qualitative study comprising interviews with people living with MS and their families followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families. Twenty-seven people with MS and 17 family members were interviewed between June 2019 and March 2020. Interviews and the ethical discussion group were audio-recorded and transcribed verbatim. Data were analysed using the framework approach. RESULTS: Participants' narratives focused on three major themes: (i) planning for an uncertain future; (ii) perceived obstacles to engaging in ACP that included uncertainty concerning MS disease progression, negative previous experiences of ACP discussions and prioritising symptom management over future planning; (iii) Preferences for engagement in ACP included a trusting relationship with a health professional and that information then be shared across services. Health professionals' accounts from the ethical discussion group departed from viewing ACP as a formal document to that of an ongoing process of seeking preferences and values. They voiced similar concerns to people with MS about uncertainty and when to initiate ACP-related discussions. Some shared concerns of their lack of confidence when having these discussions. CONCLUSION: These findings support the need for a whole system strategic approach where information about the potential benefits of ACP in all its forms can be shared with people with MS. Moreover, they highlight the need for health professionals to be skilled and trained in engaging in ACP discussions and where information is contemporaneously and seamlessly shared across services.

Primary care use by men with symptoms of possible prostate cancer: A multi-method study with an ethnically diverse sample in London.

OBJECTIVE: The objective of this study is to investigate primary care use by men with recent onset of lower urinary tract symptoms (LUTS) to identify differences in presentation and investigation that may explain ethnic inequality in prostate cancer outcomes. METHODS: This is a multi-method study of men presenting LUTS to primary care. Two hundred seventy-four men completed a self-administered questionnaire, and 23 participated in face-to-face interviews. Regression analyses investigated ethnic differences in (a) the period between symptom onset and first primary care presentation (patient interval) and (b) the interval between first primary care presentation and investigation with prostate-specific antigen (PSA) and digital rectal examination (DRE). Interview data were analysed using thematic analysis. RESULTS: Half (144, 53%) reported a solitary first symptom, although multiple first symptoms were also common, particularly in Asian and Black men. There was no difference between ethnicities in patient interval or time from presentation to investigation. However, Asian men were offered less PSA testing (odds ratio 0.39; 95% confidence interval 0.17-0.92; p = 0.03). Qualitative data revealed ethnic differences in general practitioners' offer of DRE and PSA testing and highlighted limitations in doctor-patient communication and safety netting. CONCLUSION: Our study showed only small differences in primary care experiences, insufficient to explain ethnic inequalities in prostate cancer outcomes.

Missed opportunities for diagnosing brain tumours in primary care: a qualitative study of patient experiences.

BACKGROUND: Brain tumours are uncommon, and have extremely poor outcomes. Patients and GPs may find it difficult to recognise early symptoms because they are often non-specific and more likely due to other conditions. AIM: To explore patients' experiences of symptom appraisal, help seeking, and routes to diagnosis. DESIGN AND SETTING: Qualitative study set in the East and North West of England. METHOD: In-depth interviews with adult patients recently diagnosed with a primary brain tumour and their family members were analysed thematically, using the Model of Pathways to Treatment as a conceptual framework. RESULTS: Interviews were carried out with 39 patients. Few participants (n = 7; 18%) presented as an emergency without having had a previous GP consultation; most had had one (n = 15; 38%), two (n = 9; 23%), or more (n = 8; 21%) GP consultations. Participants experienced multiple subtle 'changes' rather than 'symptoms', often noticed by others rather than the patient, which frequently led to loss of interest or less ability to engage with daily living activities. The most common changes were in cognition (speaking, writing, comprehension, memory, concentration, and multitasking), sleep, and other 'head feelings' such as dizziness. Not all patients experienced a seizure, and few seizures were experienced 'out of the blue'. Quality of communication in GP consultations played a key role in patients' subsequent symptom appraisal and the timing of their decision to re-consult. CONCLUSION: Multiple subtle changes and frequent GP visits often precede brain tumour diagnosis, giving possible diagnostic opportunities for GPs. Refined community symptom awareness and GP guidance could enable more direct pathways to diagnosis, and potentially improve patient experiences and outcomes.

'It was nothing that you would think was anything': Qualitative analysis of appraisal and help seeking preceding brain cancer diagnosis.

BACKGROUND: The patient's interpretation of the events and decisions leading up to consultation with a healthcare professional for symptoms of brain cancer is under researched. The aim of this study was to document responses to noticing the changes preceding a diagnosis of brain cancer and living with them, focusing on appraisal of changes and the decision to seek (and re-seek) help, with attention to the psychological processes underpinning the appraisal and help-seeking intervals. METHOD: In this qualitative study set in Eastern and NW England, in-depth interviews with adult patients recently diagnosed with primary brain cancer and their family members were analysed thematically, using the Model of Pathways to Treatment as a conceptual framework. RESULTS: 39 adult patients were interviewed. Regarding the appraisal interval, cognitive heuristics were found to underpin explanations of changes/symptoms. The subtlety and normality of changes often suggested nothing serious was wrong. Common explanations included stress or being busy at work, or age and these did not seem to warrant a visit to a doctor. Explanations and the decision to seek help were made within the social context, with friends, family and work colleagues contributing to appraisal and help-seeking decisions. Regarding the help-seeking interval, barriers to seeking help reflected components of Social Cognitive Theory, and included having other priorities, outcome expectations (e.g. 'feeling silly', not sure much can be done about it, not wanting to waste doctors' time) and accessibility of a preferred healthcare professional. CONCLUSION: Application of psychological theory facilitated understanding of the influences on cognition and behaviour. The study highlights implications for theory, awareness campaigns and potential opportunities promoting more timely help-seeking.

Six key topics informal carers of patients with breathlessness in advanced disease want to learn about and why: MRC phase I study to inform an educational intervention.

INTRODUCTION: Breathlessness is a common symptom of advanced disease placing a huge burden on patients, health systems and informal carers (families and friends providing daily help and support). It causes distress and isolation. Carers provide complex personal, practical and emotional support yet often feel ill-prepared to care. They lack knowledge and confidence in their caring role. The need to educate carers and families about breathlessness is established, yet we lack robustly developed carer-targeted educational interventions to meet their needs. METHODS: We conducted a qualitative interview study with twenty five purposively-sampled patient-carer dyads living with breathlessness in advanced disease (half living with advanced cancer and half with advanced chronic obstructive pulmonary disease (COPD). We sought to identify carers' educational needs (including what they wanted to learn about) and explore differences by diagnostic group in order to inform an educational intervention for carers of patients with breathlessness in advanced disease. RESULTS: There was a strong desire among carers for an educational intervention on breathlessness. Six key topics emerged as salient for them: 1) understanding breathlessness, 2) managing anxiety, panic and breathlessness, 3) managing infections, 4) keeping active, 5) living positively and 6) knowing what to expect in the future. A cross-cutting theme was relationship management: there were tensions within dyads resulting from mismatched expectations related to most topics. Carers felt that knowledge-gains would not only help them to support the patient better, but also help them to manage their own frustrations, anxieties, and quality of life. Different drivers for education need were identified by diagnostic group, possibly related to differences in caring role duration and resulting impacts. CONCLUSION: Meeting the educational needs of carers requires robustly developed and evaluated interventions. This study provides the evidence-base for the content of an educational intervention for carers of patients with breathlessness in advanced disease.

Clinicians' Views of Educational Interventions for Carers of Patients With Breathlessness Due to Advanced Disease: Findings From an Online Survey.

CONTEXT: Carers' needs in advanced disease, and specifically in relation to breathlessness, are well evidenced. Publications on educational interventions for carers of patients with advanced disease that focus on symptoms are scarce and absent for breathlessness. OBJECTIVES: To establish current education provided by clinicians for carers of patients with breathlessness in advanced disease, views about educating carers about breathlessness, and relevant outcomes for a future randomized controlled trial of an educational intervention for carers. METHODS: An online survey was completed by 365 clinicians: medical, nursing, and allied health professionals from primary care, hospital, and hospice. Descriptive statistics summarized respondent characteristics and survey responses, and the Chi-squared test was applied. Content analysis of free-text comments was conducted. RESULTS: Most clinicians reported educating carers by educating patients at clinical contacts with patients. Carer involvement was largely an 'add-on'; an active carer education strategy, where all carers were invited to attend, was not currently apparent. Clinicians endorsed the importance of educating carers about breathlessness through increasing carer confidence and/or control, helping patients' better self-manage breathlessness and potentially reducing admissions. Joint education with patients, giving practical advice, and strategies for helping patients were advised. To inform a future trial, clinicians identified improvement in patient outcomes, particularly patient quality of life as very important in enhancing clinician adoption of an educational intervention for carers. CONCLUSION: This survey revealed an appetite among clinicians for an educational intervention for carers of patients with breathlessness in advanced disease and provided important insights to underpin a future Phase II randomized controlled trial.

What Are the Key Elements of Educational Interventions for Lay Carers of Patients With Advanced Disease? A Systematic Literature Search and Narrative Review of Structural Components, Processes and Modes of Delivery.

CONTEXT: Educating carers about symptom management may help meet patient and carer needs in relation to distressing symptoms in advanced disease. Reviews of the effectiveness of carer interventions exist, but few have focused on educational interventions and none on the key elements that comprise them but which could inform evidence-based design. OBJECTIVES: To identify the key elements (structural components, processes, and delivery modes) of educational interventions for carers of patients with advanced disease. METHODS: We systematically searched seven databases, applied inclusion and exclusion criteria, conducted quality appraisal, extracted data, and performed a narrative analysis. RESULTS: We included 62 articles related to 49 interventions. Two main delivery modes were identified: personnel-delivered interventions and stand-alone resources. Personnel-delivered interventions targeted individuals or groups, the former conducted at single or multiple time points, and the latter delivered as series. Just more than half targeted carers rather than patient-carer dyads. Most were developed for cancer; few focused purely on symptom management. Stand-alone resources were rare. Methods to evaluate interventions ranged from postintervention evaluations to fully powered randomized controlled trials but of variable quality. CONCLUSION: Published evaluations of educational interventions for carers in advanced disease are limited, particularly for non-cancer conditions. Key elements for consideration in developing such interventions were identified; however, lack of reporting of reasons for nonparticipation or dropout from interventions limits understanding of the contribution of these elements to interventions' effectiveness. When developing personnel-delivered interventions for carers in advanced disease, consideration of the disease (and, therefore, caring) trajectory, intervention accessibility (timing, location, and transport), and respite provision may be helpful.

One size fits all? Mixed methods evaluation of the impact of 100% single-room accommodation on staff and patient experience, safety and costs.

BACKGROUND AND OBJECTIVES: There is little strong evidence relating to the impact of single-room accommodation on healthcare quality and safety. We explore the impact of all single rooms on staff and patient experience; safety outcomes; and costs. METHODS: Mixed methods pre/post 'move' comparison within four nested case study wards in a single acute hospital with 100% single rooms; quasi-experimental before-and-after study with two control hospitals; analysis of capital and operational costs associated with single rooms. RESULTS: Two-thirds of patients expressed a preference for single rooms with comfort and control outweighing any disadvantages (sense of isolation) felt by some. Patients appreciated privacy, confidentiality and flexibility for visitors afforded by single rooms. Staff perceived improvements (patient comfort and confidentiality), but single rooms were worse for visibility, surveillance, teamwork, monitoring and keeping patients safe. Staff walking distances increased significantly post move. A temporary increase of falls and medication errors in one ward was likely to be associated with the need to adjust work patterns rather than associated with single rooms per se. We found no evidence that single rooms reduced infection rates. Building an all single-room hospital can cost 5% more with higher housekeeping and cleaning costs but the difference is marginal over time. CONCLUSIONS: Staff needed to adapt their working practices significantly and felt unprepared for new ways of working with potentially significant implications for the nature of teamwork in the longer term. Staff preference remained for a mix of single rooms and bays. Patients preferred single rooms.