Third party disability of family members of adults with dysphagia.

Background: Third-party disability (TPD) has been studied in multiple patients including those with aphasia and hearing loss. Only one study has been done in relation to caregivers of adults with dysphagia. Third-party disability has been analysed using the International Classification of Function and Disability (ICF) framework. This study, therefore, used the ICF model to explore TPD of caregivers of adults with dysphagia for the context of Johannesburg in South Africa. Objectives: To describe how caregivers experience TPD when caring for adults with a dysphagia in Johannesburg. Methods: Data were collected from five primary adult caregivers, who were all family members, from government clinics in Johannesburg. This article reports the findings from the interviews that were analysed thematically using a top-down analysis approach. Results: Caregivers experienced challenges related to TPD mostly related to difficulties of being able to do activities of daily living for themselves, their household chores and attending social engagements. The use of body structure and function from the ICF model was not overtly applicable to the caregiver population. A new visual representation has been suggested to highlight the key themes to augment the social and psychological changes as seen on the ICF framework and demonstrated the specific interaction that these factors had on one another. Conclusion: Third-party disability is present in caregivers of patients with dysphagia. Healthcare workers need to be aware of the impact that this can have when preparing home management strategies. This newly devised representation can assist in creating a locally relevant patient-centred care approach but requires future input. Contribution: This article has provided greater insight into TPD in caregivers of adult patients with dysphagia in an urban African context. It has led to new information that can be used as an adjunct to the ICF model when understanding this phenomenon.

Cancer Experience of Care Improvement Collaboratives in the National Health Service in England

NHS England started the work described in this article with the ambition of using insight and feedback from the adult National Cancer Patient Experience Survey to grow coproduced service improvements leading to improved patient centred quality outcomes in experience for cancer patients. Based on the Institute for Healthcare Improvement’s Breakthrough Collaborative Series, the approach of the Cancer Experience of Care Improvement Collaboratives (CIC) in the English healthcare system was developed, initially with 19 NHS provider organisation teams in 2019 as a face-to-face model, then developing into two collaboratives with an additional 15 NHS provider organisation teams in Cohort 2 and 8 teams in Rare & Less Common Cancers in a virtual framework. Each cohort has reported improvements in patient experience, staff experience and team working, but more fundamentally, have been able to describe a cultural shift in the way they work, together with people, leaving a lasting impact and legacy of this work. Key learning has been recognised with the increasing emphasis on involving people with relevant lived experience as partners and colleagues in the collaborative, alongside flexibility, responsiveness and adaptability as key to enabling project teams to continue where COVID-19 pressures allowed to participate. © The Author(s), 2022.

Quality improvement project to improve the standardisation and efficiency of occupational therapy initial contact and assessment within a mental health inpatient service.

Timely contact and assessment between occupational therapists (OTs) and patients are vital to understanding their needs and creating person-centred interventions. Any delays in completing contact and assessment will likely impact patients' experience and outcomes. The aim of this study was to ensure that 90% of all patients in a male and female ward received OT initial contact within two working days of admission by the end of June 2020.With the teams working in collaboration, the first change idea of increasing the initial contact in two working days was introduced and the impact assessed on two of the five wards. The Plan-Do-Study-Act cycles used for this test of change included: Standardising the initial contact, informal training for the audit tool created to measure the admission process, increasing efficiency for documenting OT contact, updated exclusion/inclusion criteria for OT initial contact, refining documentation for contact and assessment, and the impact of COVID-19 on initial contact and admission processes.Our test of change resulted in an increase in the average initial contact from 12.5% to 71.24%. Following this success, we spread the project to the three remaining wards. Feedback from OTs using the tools we introduced ensured that we made tools as user-friendly as possible. Likewise, teams who achieved particularly high compliance noted the importance of dedicating time to conduct initial contact.Our team embarked on a quality improvement project that aimed to set a standard and increase compliance for achieving this standard. Alongside this, we developed an appropriate and pragmatic measure to track our progress. While we did not achieve 90%, we observed substantial improvements made across the participating service. Using the findings from the project, we have spread this approach to other wards and believe that it could easily be transferrable as a discreet package to other mental health settings.

Holistic care of patients with diabetic foot ulcers during the COVID-19 era: integration of Henderson's Need Theory.

The COVID-19 pandemic has inhibited the practice of diabetic foot ulcer care, particularly in the community. Comprehensive theory-based nursing care is needed to prevent further complications. Unfortunately, a study combining theory with nursing care in diabetic foot ulcer care has not been explored. When caring for patients with diabetic foot ulcers, who are also at increased risk of severe complications from COVID-19, it is important to take a holistic view of the patient and consider all of their needs and the factors affecting them. Henderson's Need Theory and the 14 basic needs contained within it was chosen to be integrated in the care of patients with diabetic foot ulcers during the pandemic, with the hope that the findings will help nurses to optimise care in both hospital-based and community practice.

The lived experience by patients and family members of extracorporeal membrane oxygenation: A qualitative study.

OBJECTIVE: To examine the lived experience of extracorporeal membrane oxygenation (ECMO) by patients and their families, and their relationship with intensive care clinicians. RESEARCH METHODOLOGY: Semi-structured interviews were conducted with six patients who had received ECMO and with four of their family members. The data were analysed narratively using a constant comparative method. SETTING: Patients were treated at a major acute care hospital in British Columbia between 2014 and 2021. ECMO was used either as a bridge to recovery or to organ transplant. Four had family members bedside throughout, while two had virtual visits due to COVID-19 infection control measures. FINDINGS: ECMO was experienced through a triad of relationships between the patient, key family members and key clinicians. The strength, directionality and focus of these relationships shifted during therapy and realigned once ECMO was removed. The largest shift involved family members. Post-ECMO, patients relied almost entirely on spouses, adult children and clinical team members to reconstruct their experience. The connection between families and clinical team members was limited and changed little. CONCLUSIONS: The lived experience of ECMO was complex in ways yet to be comprehensively reported in the literature. This technology had particular impact on family members when ECMO was used as a bridge to transplant and where run times extended to multiple weeks. COVID-19 infection control restrictions further complicated how this technology was experienced. Findings from this study highlight the importance of intensive care nurses recognising the critical role family members play as witnesses whose experiences later allow patients to make sense of their journey post-discharge.

Barriers and facilitators to the use of personal information documents in health and social care settings for people living with dementia: A thematic synthesis and mapping to the COM-B framework.

INTRODUCTION: People living with dementia experience communication difficulties. Personal information documents, or healthcare passports, enable communication of information essential for the care of a person with dementia. Despite the potential for providing person-centred care, personal information documents are not ubiquitously used. The Capability Opportunity Motivation-Behaviour (COM-B) model can be used to understand factors determining individuals' behaviours. OBJECTIVES: This study aimed to identify the barriers to and facilitators of the use of healthcare passports for people living with dementia through a systematic review methodology. METHODS: A systematic search of six electronic databases was undertaken. Grey literature was searched using three databases. All study types reporting barriers to or facilitators of the use of personal information documents in the care of adults living with dementia in high-income countries were included. Study quality was assessed using the NICE Quality Appraisal Checklist. Thematic synthesis was used to develop descriptive themes, which were subsequently mapped to the COM-B framework. RESULTS: Nineteen papers were included. Themes included training, awareness, embedding the process in norms and appreciating the value of the personal information documents. A broad range of barriers and facilitators was identified within each COM-B domain. CONCLUSION: This framework provides a starting point for evidence-informed initiatives to improve the use of personal information documents in the care of people with dementia. PATIENT AND PUBLIC CONTRIBUTION: This is a review of studies and did not involve patients or the public. Review results will guide evaluation of a local personal information document, which will be designed with input from the Dementia Champions Network (includes carers and other stakeholders).

Evaluating patient-reported outcome measures in Peru: a cross-sectional study of satisfaction and net promoter score using the 2016 EnSuSalud survey.

BACKGROUND: Patient-reported measures attempt to quantify the value health services provide to users. Satisfaction is a common summative measure, but often has limited utility in identifying poor quality care. We compared satisfaction and the net promoter score (NPS), which was developed to help businesses quantify consumer sentiment, in a nationally representative survey in Peru. We aimed to compare NPS and satisfaction as individual ratings of care, assess the relationship of patient-reported experience ratings to these outcome measures and consider the utility of these measures as indicators of facility performance based on reliability within facilities and capacity to discriminate between facilities. METHODS: We analysed the 2016 National Survey on User Satisfaction of Health Services, a cross-sectional outpatient exit survey. We assessed ratings by patient characteristics and compared the distributions of satisfaction and NPS categories. We tested the association of patient-reported experience measures with each outcome using multilevel ordinal logistic regression. We used intraclass correlation (ICC) from these models to predict minimum sample for reliable assessment and compared patient-reported experience measures in facilities with average satisfaction but below or above average NPS. RESULTS: 13 434 individuals rated services at 184 facilities. Satisfaction (74% satisfied) and NPS (17% reported at least 9 out of 10) were largely concordant within individuals but weakly correlated (0.37). Ratings varied by individual factors such as age and visit purpose. Most domains of patient-reported experience were associated with both outcomes. Adjusted ICC was higher for NPS (0.26 vs 0.11), requiring a minimum of 7 (vs 20) respondents for adequate reliability. Within the 70% of facilities classified as average based on satisfaction, NPS-based classification revealed systematic differences in patient-reported experience measures. CONCLUSION: While satisfaction and NPS were broadly similar at an individual level, this evidence suggests NPS may be useful for benchmarking facility performance as part of national efforts in Peru and throughout Latin America to identify deficits in health service quality.

Influences on nurses' engagement in antimicrobial stewardship behaviours: a multi-country survey using the Theoretical Domains Framework.

BACKGROUND: Antimicrobial resistance (AMR) is affected significantly by inappropriate antibiotic use, and is one of the greatest threats to human health. Antimicrobial stewardship (AMS) is a programme of actions promoting responsible use of antimicrobials, and is essential for limiting AMR. Nurses have an important role to play in this context. AIM: To investigate the determinants of nurse AMS behaviours and the impact of past training. METHODS: A cross-sectional multi-country survey design with mixed methods was employed. Participants were 262 nurses {223 female; mean age 44.45 [standard deviation (SD) 10.77] years} of 10 nationalities, with individual survey links sent via professional networks in five countries, alongside Twitter. Nine AMS behaviours and 14 behavioural determinants were assessed quantitatively using the Theoretical Domains Framework (TDF), and mapped to the Capability, Opportunity, Motivation - Behaviour (COM-B) model. Analysis identified differences between nurses with and without AMS training. The influence of coronavirus disease 2019 (COVID-19) on AMS behaviour was investigated qualitatively using free-text data. FINDINGS: Nurses performed all nine AMS behaviours, which were significantly higher [t (238) -4.14, P<0.001] among those who had received AMS training [mean 53.15 (SD 7.40)] compared with those who had not received AMS training [mean 48.30 (SD 10.75)]. Nurses who had received AMS training scored significantly higher in all of the TDF domains. The TDF was able to explain 27% of the variance in behaviour, with 'Skills' and 'Behavioural regulation' (e.g. ability to self-monitor and plan) shown to be the most predictive of AMS actions. Both of these domains are situated in the 'Capability' construct of the COM-B model, which can be enhanced with the intervention strategies of education and training. An increase in AMS behaviours was reported since the COVID-19 pandemic, regardless of previous training. Six core themes were linked to AMS: (1) infection prevention and control; (2) antimicrobials and antimicrobial resistance; (3) diagnosis of infection and use of antibiotics; (4) antimicrobial prescribing practice; (5) person-centred care; and (6) interprofessional collaborative practice. CONCLUSION: Nurse training has a significant beneficial effect on AMS behaviour and its determinants. Nurses who had received AMS training scored higher in all TDF determinants of behaviour compared with those who had not received AMS training, resulting in higher capability, opportunity and motivation to perform AMS behaviour. AMS education and training should be offered to nurses to enhance these factors. Future research should consider the optimal level of training to optimize AMS behaviour, with a focus on developing skills and behavioural regulation.

Designing the careful and kind clinic: an evidence-based approach.

BACKGROUND: There is evidence that creating a 'healthy workplace' can be of profound importance for clinicians, team members and patients. Yet there have been few papers that have proposed mechanisms to take decades of research and translate this into a practical list of options for leaders and managers to take into account when structuring a clinic based on care and kindness to achieve optimal health. EVIDENCE: We bring together 20 years of scholarship linking care of the caregivers with outcomes for caregivers and patients. The data are used to support both structures and cultures that will result in satisfied and thriving healthcare team members, as well as satisfied and healthy patients. RESULTS: The clinic based on care of the caregivers will be structured to address key aspects of worklife that are known to cause either satisfaction or burnout. Aspects of care, such as time pressure, chaotic environments and worker control of their workplace, will be taken into account in clinical design; organisational culture will be supportive and cohesive, emphasising quality, values and communication. Experiences based on gender and race will be measured and continuously improved; and performance will be evaluated in a new, human-centred manner. OUTCOMES: The careful and kind clinic will be a remarkable place to work; in contrast to industrialised healthcare, this will be an environment where health can indeed be optimised, for both workers and patients.

Redesigning care to support earlier discharge from a neonatal intensive care unit: a design thinking informed pilot.

BACKGROUND: Preterm infants may remain in neonatal intensive care units (NICUs) to receive proper nutrition via nasogastric tube feedings. However, prolonged NICU stays can have negative effects for the patient, the family and the health system. AIM: To demonstrate how a patient-centred, design thinking informed approach supported the development of a pilot programme to enable earlier discharge of preterm babies. METHOD: We report on our design thinking-empathy building approach to programme design, initial outcomes and considerations for ongoing study. RESULTS: Through the use of design thinking methods, we identified unique needs, preferences and concerns that guided the development of our novel early discharge programme. We found that stable, preterm infants unable to feed by mouth and requiring nasogastric tubes can be cared for at home with remote patient monitoring and telehealth support. In addition, novel feeding strategies can help address parental preferences without compromising infant growth. CONCLUSION: A patient-centred, design thinking informed approach supported the development of a pilot programme to enable earlier discharge of preterm babies. The programme resulted in a reduced length of stay, thereby increasing NICU bed capacity and limiting hospital turn-aways.

Shared decision-making in Canada: Update on integration of evidence in health decisions and patient-centred care government mandates.

In Canada, government mandates for patient-centred care (PCC) vary across the 10 provinces and three territories. Although basic medical and hospital services are provided for all, health care options for patients also depend on having private insurance. Thus, the current design of the Canadian healthcare system has several implications for PCC and shared decision-making (SDM). Since 2007, this is our fourth update on SDM in Canada. The aim of this paper is to provide an update on the current state of SDM and patient and public involvement in Canada. Overall, we still observed the difficulty of implementing any sort of national strategy partly because of the decentralized nature of the healthcare system. Second, national professional education programs are complicated by licensure and scope of practice variations across jurisdictions. Third, there are variations in the availability of different options covered by universal healthcare. Canada has experienced some favorable development as PCC is now explicitly articulated in the policies of most provinces and territories and there are increased efforts to give patients more access to their electronic health records. However, patient and public engagement (PPE) reform in health programs and governance remains an exception, and continuing centralization of governance structures may reduce their responsiveness to patient priorities. In a 2018 survey, 47.2% of respondents reported that they were not told by their health professional that they had a choice about treatment. Nonetheless, decision aids and decision coaching are increasingly available for health-related decisions and the Ottawa Hospital Research Institute's decision aid inventory has ensured continued leadership in this area. Diverse jurisdictions are starting to embed decision aids into care pathways, with some decision aids being included in clinical practice guidelines. The COVID-19 pandemic may have had a negative impact on SDM by removing decision choices due to emergency public health mandates, but stimulated new research and decision aids. Canada continues to assign health research funding to SDM and PCC, and a program dedicated to patient-oriented research is central to this effort. Guides and frameworks are increasingly available for planning and evaluating PPE. Finally, various initiatives are attempting to involve and empower Indigenous peoples through PPE and SDM.

The State of the Evidence about the Family and Community Nurse: A Systematic Review.

INTRODUCTION: The increase in chronic degenerative diseases poses many challenges to the efficacy and sustainability of healthcare systems, establishing the family and community nurse (FCN) who delivers primary care as a strategic role. FCNs, indeed, can embrace the complexity of the current healthcare demand, sustain the ageing of the population, and focus on illness prevention and health promotion, ensuring a continuous and coordinated integration between hospitals and primary care ser. The literature on FCNs is rich but diverse. This study aimed to critically summarise the literature about the FCN, providing an overall view of the recent evidence. METHODS: A state-of-art systematic review was performed on PubMed, CINAHL, and Scopus, employing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement and checklist to guide the search and reporting. RESULTS: Five interpretative themes emerged from the 90 included articles: clinical practice, core competencies, outcomes, Organisational and educational models, and advanced training program. CONCLUSIONS: FCNs can make a major contribution to a population's health, playing a key role in understanding and responding to patients' needs. Even if the investment in prevention does not guarantee immediate required strategies and foresight on the part of decisionmakers, it is imperative to invest more political, institutional, and economic resources to support and ensure the FCNs' competencies and their professional autonomy.

Less Is More: A Narrative Review of Deciding When Surgical Intervention Should Be Withheld.

Decision-making in surgery is one of the great unspoken challenges, an important but markedly challenging skill that takes a lifetime to master. The choice not to operate generally proves a significantly harder conclusion than opting for intervention. Our paper explores the influences which affect a clinician's decision to operate or not. The challenging situation where patient and clinician disagree on proposed management is also explored. Implications on management are discussed, with constructive communication techniques offered, including the recent COVID-19 pandemic.

Needs assessment for health service design for people with back pain in a hospital setting: A qualitative study.

BACKGROUND: There is a need for effective health service solutions to provide greater structure and support for implementing evidence-based practice in back pain care. Patient involvement in developing these solutions is crucial to increase relevance, acceptability and uptake. OBJECTIVES: To determine patients' perceived needs and barriers to best-practice back pain care, and potential solutions to better address care needs. The study is the third in a series of needs assessment studies feeding into the 'idea generation' for service design in a large teaching hospital in a culturally and linguistically diverse community in metropolitan Sydney, Australia. DESIGN: We conducted a combination of focus groups and in-depth interviews using an interpretive description approach. We used inductive thematic analysis to identify the main themes. SETTING AND PARTICIPANTS: We purposively sampled patients with diverse characteristics from the neurosurgery and physiotherapy outpatient clinics, in particular those whose primary language was English, Arabic, Persian or Mandarin. Non-English audio recordings were translated and transcribed by bilingual researchers. RESULTS: There were 24 participants (focus groups = 9; individual interviews = 15) when data saturation was reached. The analysis identified three key themes with several subthemes around what service designers needed to understand in helping people with back pain in this setting: (1) This is who I am; (2) It's not working for me; and (3) What I think I need. DISCUSSION AND CONCLUSION: This study highlights that perceived unmet needs of patients are underpinned by unhelpful beliefs about the causes of and solutions for back pain, misaligned care expectations, unclear expectations of the hospital role and fragmentations in the health system. To design and implement a service that can deliver better back pain care, several solutions need to be integrated around: developing new resources that challenge unhelpful beliefs and set realistic expectations; improving access to education and self-management resources; focusing on individualized care; using a collaborative multidisciplinary approach within the hospital; and better connecting with and directing primary health care services. PATIENT OR PUBLIC CONTRIBUTION: A consumer representative of the Western Sydney Local Health District provided input during study conceptualisation and is duly recognized in the Acknowledgements section.