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

'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.the brain tumour charit

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

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.This study was supported by a research grant from Dimbleby Cancer Care. RM is supported by the Cambridge NIHR Biomedical Research Unit

Key elements carers educational interventions

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.Macmillan Cancer Support for Post-Doctoral Fellowship funding for MF and the review consumables. CP’s work was part-funded by NIHR CLAHRC East of England. FMW’s work was undertaken during her NIHR Clinical Lectureship then NIHR Clinician Scientist award.This is the author accepted manuscript. It is currently embargoed pending publication

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

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

Evaluating a major innovation in hospital design: workforce implications and impact on patient and staff experiences of all single room hospital accommodation

BackgroundNew hospital design includes more single room accommodation but there is scant and ambiguous evidence relating to the impact on patient safety and staff and patient experiences.ObjectivesTo explore the impact of the move to a newly built acute hospital with all single rooms on care delivery, working practices, staff and patient experience, safety outcomes and costs.Design(1) Mixed-methods study to inform a pre-/post-‘move’ comparison within a single hospital, (2) quasi-experimental study in two control hospitals and (3) analysis of capital and operational costs associated with single rooms.SettingFour nested case study wards [postnatal, acute admissions unit (AAU), general surgery and older people’s] within a new hospital with all single rooms. Matched wards in two control hospitals formed the comparator group.Data sourcesTwenty-one stakeholder interviews; 250 hours of observation, 24 staff interviews, 32 patient interviews, staff survey (n?=?55) and staff pedometer data (n?=?56) in the four case study wards; routinely collected data at ward level in the control hospitals (e.g. infection rates) and costs associated with hospital design (e.g. cleaning and staffing) in the new hospital.Results(1) There was no significant change to the proportion of time spent by nursing staff on different activities. Staff perceived improvements (patient comfort and confidentiality), but thought the new accommodation worse for visibility and surveillance, teamwork, monitoring, safeguarding and remaining close to patients. Giving sufficient time and attention to each patient, locating other staff and discussing care with colleagues proved difficult. Two-thirds of patients expressed a clear preference for single rooms, with the benefits of comfort and control outweighing any disadvantages. Some patients experienced care as task-driven and functional, and interaction with other patients was absent, leading to a sense of isolation. Staff walking distances increased significantly after the move. (2) A temporary increase in falls and medication errors within the AAU was likely to be associated with the need to adjust work patterns rather than associated with single rooms, although staff perceived the loss of panoptic surveillance as the key to increases in falls. Because of the fall in infection rates nationally and the low incidence at our study site and comparator hospitals, it is difficult to conclude from our data that it is the ‘single room’ factor that prevents infection. (3) Building an all single room hospital can cost 5% more but the difference is marginal over time. Housekeeping and cleaning costs are higher.ConclusionsThe nature of tasks undertaken by nurses did not change, but staff needed to adapt their working practices significantly and felt ill prepared for the 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. There was no strong evidence that single rooms had any impact on patient safety but housekeeping and cleaning costs are higher. In terms of future work, patient experience and preferences in hospitals with different proportions of single rooms/designs need to be explored with a larger patient sample. The long-term impact of single room working on the nature of teamwork and informal learning and on clinical/care outcomes should also be explored.FundingThe National Institute for Health Research Health Services and Delivery Research programme