Project description:ObjectivesTo search the literature systematically in order to map and identify gaps in research investigating patient and family member psychoeducation needs regarding post-stroke cognition.DesignScoping review conducted in line with Joanna Briggs Institute (JBI) recommendations and PRISMA-ScR checklist.MethodsMEDLINE, PsycINFO, Embase, CINAHL and Scopus were searched on 25 August 2023 for peer-reviewed studies conducted in a high-income country, describing cognition-related psychoeducation needs in stroke survivors and/or family members aged ≥18 years (≥50% of the study population). Two reviewers independently screened titles, abstracts and then full-text articles. One reviewer extracted pre-defined study characteristics and findings. These data were verified by a second reviewer. Synthesis involved descriptive statistics and thematic analysis.ResultsSearches identified 8115 articles, of which 30 were included. Articles were published between 1996 and 2023. Studies were conducted in Australia (n=7), USA (n=6), UK (n=5), Canada (n=3), New Zealand (n=3), Ireland (n=2), Netherlands (n=2), South Korea (n=1) and Sweden (n=1). Most studies (n=21) used an exclusively qualitative approach but six combined qualitative and quantitative methods. The post-stroke period under investigation varied, including the acute/subacute stage (n=10) and the chronic stage (n=3), though many articles did not state the timepoint explicitly. Research was conducted with stroke survivors only (n=7), family members only (n=12) and both stroke survivors and family members (n=11). Qualitative analysis suggested participants wanted psychoeducation about cognitive impairment, including recovery expectations, treatment/therapy options and signposting to services/resources available. Hopeful information was important. Factors potentially impacting cognition-related psychoeducation needs were identified as time since stroke and family member relationship. Most articles focused on aphasia with very few studies considering other cognitive domains (eg, memory, attention, executive function).ConclusionsThe need for psychoeducation regarding cognition is well evidenced throughout the post-stroke care continuum, though most research has focused on language impairments. Further research investigating other cognitive impairments (eg, impairments in memory, attention and executive function) is required.

Project description:BackgroundGaps in discharge planning are experienced by 41% of hospital patients in Australia. There is an established body of knowledge regarding the features of the discharge process that need to be improved to avoid subsequent hospital readmission and enhance the discharge experience. However, many of these studies have focused solely on factors related to unplanned hospital readmissions and there has been limited success in operationalising improvements to the discharge process. The aim of this study was to explore and describe the factors that influence the decision to discharge adult medical patients from hospital, from patient, carer and staff perspectives.MethodsA qualitative descriptive study was conducted in one acute medical ward in Melbourne, Australia. The study data were collected by observations of clinical practice and semi-structured interviews with patients, carers and staff. Participants were: i) English-speaking adults identified for discharge home, ii) patient carers, and iii) staff involved in the discharge process. Observation data were analysed using content analysis and interviews data were analysed using thematic analysis.ResultsTwenty-one discharges were observed, and 65 participants were interviewed: 21 patients, two carers, and 42 staff. Most patients (76%) were identified as being ready for discharge during morning medical rounds, and 90% of discharge decisions were made collaboratively by the medical team and the patient. Carers were observed to be notified in 15 discharges by the patient (n = 8), doctors (n = 4), or nursing staff (n = 3). Five themes were constructed from thematic analysis of interviews: Readiness for Home, Fragmented Collaboration, Health Literacy, Unrealistic Expectations, and Care beyond Discharge. A collaborative team and supportive carers were considered to enhance risk assessment and discharge planning, however fragmented communication between clinicians, and between clinicians and patients/carers was a barrier to discharge decision-making.ConclusionsOur study highlights the need for a more coordinated approach to discharge decision-making that optimises communication with patients and carers and multidisciplinary workflows and reduces fragmentation. The importance of patient-centred care and a personalised approach to care are well established. However, there is a need to design systems to customise the entirety of the patient journey, including the approach to discharge decision making.

Project description:Background: Non-alcoholic steatohepatitis (NASH) is a chronic liver disease with severe complications and without approved therapies. Currently, there is limited data on the overall burden of the disease for patients or on patient needs and preferences. This study investigates patient preferences in relation to potential future therapies for NASH. In addition, the factors that are relevant to patients and their importance in relation to future treatment options are explored. Method: Telephone in-depth interviews (TDIs) preceded an online 30-min quantitative survey. The online survey included (1) multiple choice questions (MCQs) on NASH diagnosis and disease background. (2) An exercise to determine patients' satisfaction levels with information provided at diagnosis, and to explore symptomatology in detail. (3) Exercises to evaluate potential new products and product attributes, including a "drag and drop" ranking exercise, and an adaptive choice-based conjoint exercise (ACBC). (4) The EQ-5D-5L questionnaire and the Visual Analog Scale (VAS), which measures patients' health status. (5) Collection of socio-demographic data, and (6) Questions to measure patient satisfaction with the survey. Results: There were 166 patients included in this study from Canada [n = 36], Germany [n = 50], the UK [n = 30], and USA [n = 50]. Fifty seven percent of patients [n = 94] had had a liver biopsy for confirmation of NASH. Patients were often unable to link their symptoms to NASH or other conditions. ACBC results showed that efficacy, defined as "impact on liver status" was the single most important attribute of a potential future NASH therapy. Other attributes considered to have secondary importance included impact on weight, symptom control and the presence of side effects. The EQ-5D utility score was 0.81 and VAS = 67.2. Conclusion: "Impact on liver status" is the primary outcome sought. Patients demonstrate a general lack of understanding of their disease and appeared to be unfamiliar with longer-term consequences of NASH. It is necessary to improve patient understanding of NASH and its progressive nature, and there is a need for improving confirmatory diagnosis and monitoring.

Project description:BackgroundSystemic sclerosis is a chronic and rare connective tissue disease with multiorgan effects, including interstitial lung disease (ILD). Navigating systemic sclerosis-interstitial lung disease presents a challenge for patients due to the gaps in patient education, which can impact patient health and quality of life. This study utilized the nominal group technique to identify priority knowledge gaps among patients with systemic sclerosis-interstitial lung disease and inform future educational interventions and research.MethodsWe conducted four structured group sessions using the nominal group technique. Patients with systemic sclerosis-interstitial lung disease were presented with two questions that aimed to identify knowledge gaps. Following participant ranking, investigators performed a thematic analysis of the patients' responses to categorize the generated knowledge gaps.ResultsTwenty-one patients were interviewed and ranked the top three themes for the first question (What questions about your scleroderma-lung disease that you have keep you awake at night?), based on total points, as: (1) Understanding progression, its impacts on the body, and managing health changes (39.7%); (2) anticipating future symptoms and implementing strategies for management and coping (19.8%); and (3) employing and understanding non-pharmacological interventions and self-management strategies (17.5%). The top three themes for the second question (What information do you want about your scleroderma-lung disease that you cannot find?) ranked by total points were: (1) understanding progression, its impacts on the body, and managing health changes (41.3%); (2) navigating health system barriers (16.7%); and (3) research efforts toward treating scleroderma (10.3%).ConclusionsOur study underscores the importance of understanding the educational needs of patients with systemic sclerosis-interstitial lung disease. Patient responses emphasize the need to comprehensively address concerns about disease management, coping with impacts on social life, and navigating the healthcare system. By addressing these multifaceted concerns, we can design and implement patient-centered education to empower patients through increased support.

Project description:ObjectivesTo understand the reasons behind, and experience of, seeking and receiving emergency ambulance treatment for a 'primary care sensitive' condition.DesignA comprehensive, qualitative systematic review. Medline, Embase, PsychInfo, Cumulative Index of Nursing and Allied Health, Health Management Information Systems, Healthcare Management Information Consortium, OpenSigle, EThOS and Digital Archive of Research Theses databases were systematically searched for studies exploring patient, carer or healthcare professional interactions with ambulance services for 'primary care sensitive' problems. Studies using wholly qualitative approaches or mixed-methods studies with substantial use of qualitative techniques in both the methods and analysis sections were included. An analytical thematic synthesis was undertaken, using a line-by-line qualitative coding method and a hierarchical inductive approach.ResultsOf 1458 initial results, 33 studies met the first level (relevance) inclusion criteria, and six studies met the second level (methodology and quality) criteria. The analysis suggests that patients define situations worthy of 'emergency' ambulance use according to complex socioemotional factors, as well as experienced physical symptoms. There can be a mismatch between how patients and professionals define 'emergency' situations. Deciding to call an ambulance is a process shaped by practical considerations and a strong emotional component, which can be influenced by the views of caregivers. Sometimes the value of a contact with the ambulance service is principally in managing this emotional component. Patients often wish to hand over responsibility for decisions when experiencing a perceived emergency. Feeling empowered to take control of a situation is a highly valued aspect of ambulance care.ConclusionsWhen responding to a request for 'emergency' help for a low-acuity condition, urgent-care services need to be sensitive to how the patient's emotional and practical perception of the situation may have shaped their decision-making and the influence that carers may have had on the process. There may be novel ways to deliver some of the valued aspects of urgent care, more geared to the resource-limited environment.

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Rethinking complex needs with patient and carer perspectives

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