From identifying patient safety risks to reporting patient complaints: A grounded theory study on patients' hospital experiences.

AIM: To explore how patients with hospital experience construct patient safety, from the identification of a patient safety risk to the decision to file a complaint. BACKGROUND: Patients play an important role in the prevention of adverse events in hospitals, but the ability of patients to act and influence their own safety is still challenged by multiple factors. Understanding how patients perceive risk and act to prevent harm may shed light on how to enhance patients' opportunities to participate in patient safety. DESIGN: The research design of this study is qualitative and exploratory. METHODS: Twelve participants who had experienced Swedish hospital care were interviewed between June 2022 and July 2023. The method of analysis was constructivist grounded theory, focusing on social processes. The COREQ checklist for qualitative research was followed. RESULTS: Four categories were constructed: (1) defining the boundary between one's own capacity and that of the hospital, (2) acting to minimize the impact on one's safety, (3) finding oneself in the hands of healthcare professionals and (4) exploring the boundaries between normality and abnormality of the situation. This process was captured in the core category of navigating the path of least suffering. This illustrated how the participants constructed meaning about patient safety risks and showed that they prevented multiple adverse events. CONCLUSIONS: Provided that participants were able to act independently, they avoided a multitude of adverse events. When they were dependent on healthcare professionals, their safety became more vulnerable. Failure to respond to the participants' concerns could lead to long-term suffering. RELEVANCE TO CLINICAL PRACTICE: By responding immediately to patients' concerns about their safety, healthcare professionals can help prevent avoidable suffering and exhaustive searching for someone in the healthcare system who will take their needs seriously. PATIENT CONTRIBUTION: A member check was performed with the help of one of the participants who read the findings to confirm familiarity.

Patient participation-18 months of patient and staff perspectives in kidney care: A mixed methods study addressing the effects of facilitating staff person-centredness.

RATIONALE: Patient participation should encapsulate the individual's resources and needs, though such standards remain rationed for people living with a long-term health concern like kidney failure. AIMS: To illustrate what patient participation signified to patients and staff in kidney care, and whether an agreed or disagreed conceptualisation occurred over time, evaluating the influence of two study-specific interventions to facilitate more person-centred participation. METHOD: By convergent mixed methods design across 9 units in Sweden, we repeated the following data collection at 3 time points over 18 months: semistructured interviews with patients and staff (n = 72), and structured reviews for accounts of participation in patient records (n = 240). Data were subjected to content analysis and descriptive statistics, respectively. The outcomes were appraised for changes over time besides the interventions to enhance attention to patients' participation: a clinical tool and guidance distributed to management, and additional local support, respectively. RESULTS: Both patients and staff described patient participation as a comprehension of the disease and its management in everyday life. Yet, patients accentuated participation as one's experiences being recognised, and mutual knowledge exchange. Instead, staff emphasised the patients managing their treatment. The health records primarily represented what staff do to support their notion of patient participation. No influence of the interventions was noted, but what signified patient participation was maintained over time. CONCLUSION: Both patients and staff stress the importance of patient participation, although they focus on different elements. Further person-centred conduct warrants a shared conceptualisation and strategies addressing and scaffolding patients' preferences and means.

Exploring differences in patient participation in simulated emergency cases in co-located and distributed rural emergency teams - an observational study with a randomized cross-over design.

BACKGROUND: In northern rural Sweden, telemedicine is used to improve access to healthcare and to provide patient-centered care. In emergency care during on-call hours, video-conference systems are used to connect the physicians to the rest of the team - creating 'distributed teams'. Patient participation is a core competency for healthcare professionals. Knowledge about how distributed teamwork affects patient participation is missing. The aim was to investigate if and how teamwork affecting patient participation, as well as clinicians' perceptions regarding shared decision-making differ between co-located and distributed emergency teams. METHODS: In an observational study with a randomized cross-over design, healthcare professionals (n = 51) participated in authentic teams (n = 17) in two scripted simulated emergency scenarios with a standardized patient: one as a co-located team and the other as a distributed team. Team performances were filmed and observed by independent raters using the PIC-ET tool to rate patient participation behavior. The participants individually filled out the Dyadic OPTION questionnaire after the respective scenarios to measure perceptions of shared decision-making. Scores in both instruments were translated to percentage of a maximum score. The observational data between the two settings were compared using linear mixed-effects regression models and the self-reported questionnaire data were compared using one-way ANOVA. Neither the participants nor the observers were blinded to the allocations. RESULTS: A significant difference in observer rated overall patient participation behavior was found, mean 51.1 (± 11.5) % for the co-located teams vs 44.7 (± 8.6) % for the distributed teams (p = 0.02). In the PIC-ET tool category 'Sharing power', the scores decreased from 14.4 (± 12.4) % in the co-located teams to 2 (± 4.4) % in the distributed teams (p = 0.001). Co-located teams scored in mean 60.5% (± 14.4) when self-assessing shared decision-making, vs 55.8% (± 15.1) in the distributed teams (p = 0.03). CONCLUSIONS: Team behavior enabling patient participation was found decreased in distributed teams, especially regarding sharing power with the patient. This finding was also mirrored in the self-assessments of the healthcare professionals. This study highlights the risk of an increased power asymmetry between patients and distributed emergency teams and can serve as a basis for further research, education, and quality improvement.

Protocol for a hybrid effectiveness-implementation clinical trial evaluating video-assisted electronic consent vs standard consent for patients initiating and continuing haemodialysis in Australia (eConsent HD).

INTRODUCTION: Communicating complex information about haemodialysis (HD) and ensuring it is well understood remains a challenge for clinicians. Informed consent is a high-impact checkpoint in augmenting patients' decision awareness and engagement prior to HD. The aims of this study are to (1) develop a digital information interface to better equip patients in the decision-making process to undergo HD; (2) evaluate the effectiveness of the co-designed digital information interface to improve patient outcomes; and (3) evaluate an implementation strategy. METHODS AND ANALYSIS: First, a co-design process involving consumers and clinicians to develop audio-visual content for an innovative digital platform. Next a two-armed, open-label, multicentre, randomised controlled trial will compare the digital interface to the current informed consent practice among adult HD patients (n=244). Participants will be randomly assigned to either the intervention or control group. Intervention group: Participants will be coached to an online platform that delivers a simple-to-understand animation and knowledge test questions prior to signing an electronic consent form. CONTROL GROUP: Participants will be consented conventionally by a clinician and sign a paper consent form. Primary outcome is decision regret, with secondary outcomes including patient-reported experience, comprehension, anxiety, satisfaction, adherence to renal care, dialysis withdrawal, consent time and qualitative feedback. Implementation of eConsent for HD will be evaluated concurrently using the Consolidation Framework for Implementation Research (CFIR) methodology. ANALYSIS: For the randomised controlled trial, data will be analysed using intention-to-treat statistical methods. Descriptive statistics and CFIR-based analyses will inform implementation evaluation. ETHICS AND DISSEMINATION: Human Research Ethics approval has been secured (Metro North Health Human Research Ethics Committee B, HREC/2022/MNHB/86890), and Dissemination will occur through partnerships with stakeholder and consumer groups, scientific meetings, publications and social media releases. TRIAL REGISTRATION NUMBER: Australian and New Zealand Clinical Trials Registry (ACTRN12622001354774).

Exploring barriers and solutions to consumer involvement in health service research using a nominal group technique.

BACKGROUND: Consumer involvement in health research is when patients, their families and caregivers work with researchers on research projects. Despite the growing expectation for health services to facilitate the involvement of consumers in research, the practical integration of this approach is an ongoing process, with limited research conducted into how Australian health services can support this practice. This study explored consumer perspectives on the barriers and solutions to enabling consumer involvement in research within an Australian tertiary hospital and health service, and staff perspectives on the solutions to facilitating consumer involvement. A prior survey had identified barriers to consumer involvement from the staff perspective. The broad aim was to inform the development of a framework to help promote consumer involvement in research within the health service. METHODS: A Nominal Group Technique (NGT) was utilised with groups comprised of health service consumers and staff. Three health consumers were co-researchers in the full life-cycle of this study and are included as authors. RESULTS: Ten consumers and 14 staff participated across three sessions ranging from one to three hours. For consumers, barriers to their involvement were grouped into seven domains: (1) lack of connection with researchers/research projects, (2) low research literacy, (3) structural barriers, (4) lack of acknowledgement, (5) implementation challenges, (6) inadequate information provision, and (7) representation concerns. Solutions to enabling involvement were grouped into five domains: (1) support to connect with researchers/research projects, (2) adequate information provision, (3) incentive for involvement, (4) acknowledgement, and (5) balanced representation. Staff ideas for solutions were grouped into five domains: (1) support to connect with consumers, (2) support to involve consumers, (3) access to funds to remunerate consumers, (4) more time to involve consumers, and (5) staff training. CONCLUSION: Through an NGT methodology, this study delivered a nuanced comprehension of perspectives on involving consumers in research from both health service consumers and staff. These findings serve as a foundation for identifying strategies that foster enhanced and refined relationships between consumers and researchers, advancing the collaborative landscape in health research. The findings from this project offer valuable strategies for researchers to better engage consumers in research and for consumer groups to enhance their involvement. Additionally, these insights could be used by other health services to advocate for essential resources.

Consumer involvement in health research is when patients, their families, and caregivers work with researchers on research projects. While there is a growing expectation for health services to promote the involvement of consumers in health service research, it is still a work in progress, especially in Australia, where there hasn't been much research done on this topic. This study looked at what consumers and staff at an Australian hospital thought would hinder or help consumers to become involved in health research. The study used a method called the Nominal Group Technique (NGT), where groups of staff and consumers met for sessions ranging from one to three hours to share and prioritise their ideas. Consumers thought that barriers to their involvement included difficulty connecting with researchers or projects, not knowing much about research, and personal barriers to involvement (such as lack of childcare). They believed that better connection with researchers, information, incentives for involvement, and ensuring everyone's voices are heard were possible solutions. Staff also had ideas for solutions, like providing support to connect with consumers and more time for research activities. Overall, this study describes what consumers and staff think about working together on research. These findings can help develop strategies for building relationships between consumers and researchers, advancing collaborative efforts in health research.

Incorporating postmenopausal women's perspectives into osteoporosis clinical guidelines: A systematic review.

OBJECTIVE: To assess the inclusion of individuals' perspectives in the development of osteoporosis GPGs for primary fracture prevention in postmenopausal women. STUDY DESIGN AND SETTING: We performed a comprehensive systematic search across guideline databases and CPGs developing organizations websites. Using the AGREE II tool, we assessed the quality of the guidelines, with particular emphasis on the inclusion of patients, or representatives in the development process. We also examined if women's perspectives were considered at the recommendations level and explored the potential association between the inclusion of patients' values and preferences with the quality of the CPGs. RESULTS: We retrieved a total of 491 eligible CPGs, of which 33 were finally included. The majority of the CPGs were developed by scientific societies (63.6%), primarily from Europe (39.4%) and North America (30.3%). One in every four (24.2%) guidelines explicitly included individuals' perspectives in their development, and one in ten (12.1%) included research evidence about this aspect to support their recommendations. The domains with the lowest mean scores in the quality assessment were applicability (42.4%), rigour of development (44.7%), and stakeholder involvement (45.7%), and 61% were recommended for use according to our assessment. Guidelines of higher quality were more likely to include women's perspective in their development (mean difference 39.31, p=0.003). CONCLUSION: The incorporation of women's perspectives into the process of developing guidelines for primary fracture prevention in osteoporosis remains inadequate. Our findings serve as a call for guideline developers to improve this situation, and for users, and policymakers to be aware of these limitations, when using or implementing guidelines in this field.

Bedside handovers in mental health care: An explorative review.

INTRODUCTION: Involving mental healthcare patients in nursing handover practices seems a promising method for increasing patient participation, empowerment, and shared decision-making but is hardly found in practice. METHOD: An explorative review on bedside handovers in mental health care was conducted. Searched databases included CINHAHL, Web of Science, PubMed, and Embase. The search strategy yielded 3126 articles. Nine articles met the inclusion criteria and were included in this review. RESULTS: Pre- and post-implementation perspectives were described, as well as strategies for implementation. After the implementation of bedside handover, nurses and patients experienced more time spent together and a greater sense of involvement with the care plans could be noticed. DISCUSSION: Being involved in bedside handovers facilitates active participation and open dialogue between nurses and patients. This accelerates the opportunities for patients to take part in shared decision-making and feel recognised as experts in their illness experience. More research on possible differences in effectiveness across different patient diagnoses is recommended. CONCLUSION: Involving patients in mental health care in handover practices seems a promising method but limited research has been done to explore the meaning it has to mental healthcare nurses and patients.

The Medicines Optimisation Innovation Centre: a dedicated centre driving innovation in medicines optimisation-impact and sustainability.

BACKGROUND: Sub-optimal medicines use is a challenge globally, contributing to poorer health outcomes, inefficiencies and waste. The Medicines Optimisation Innovation Centre (MOIC) was established in Northern Ireland by the Department of Health (DH) in 2015 to support implementation of the Medicines Optimisation Quality Framework. AIM: To demonstrate how MOIC informs policy and provides support to commissioners to improve population health and wellbeing. SETTING: MOIC is a regional centre with multidisciplinary and multi-sector clinical expertise across Health and Social Care and patient representation. DEVELOPMENT: Core funded by DH, MOIC has a robust governance structure and oversight programme board. An annual business plan is agreed with DH. Rigorous processes have been developed for project adoption and working collaboratively with industry. IMPLEMENTATION: MOIC has established partnerships with academia, industry, healthcare and representative organisations across Europe, participating in research and development projects and testing integrated technology solutions. A hosting programme has been established and evaluation and dissemination strategies have been developed. EVALUATION: MOIC has established numerous agreements, partnered in three large EU projects and strengthened networks globally with extensive publications and conference presentations. Informing pathway redesign, sustainability and COVID response, MOIC has also assisted in the development of clinical pharmacy services and antimicrobial stewardship in Europe and Africa. Northern Ireland has been recognised as a 4-star European Active and Healthy Ageing Reference Site and the Integrated Medicines Management model as an example of best practice in Central and Eastern Europe. CONCLUSION: MOIC has demonstrated considerable success and sustainability and is applicable to health systems globally.

The perceptions and experiences of community nurses and patients towards shared decision-making in the home setting: An integrative review.

AIM: To explore patients' and community nurses' perceptions and experiences of shared decision-making in the home. DESIGN: Integrative review. DATA SOURCES: CINAHL, British Nursing Index, Psycinfo, Medline and Social Services Abstracts were searched for qualitative, quantitative and mixed methods papers published between 1 December 2001 and 31 October 2023. REVIEW METHODS: A systematic search of electronic databases was undertaken using defined inclusion criteria. The included papers were appraised for quality using the Joanna Briggs Institute critical appraisal checklist for qualitative research. Relevant data were extracted and thematically analysed. RESULTS: Fourteen papers comprising 13 research studies were included. Patients attached great importance to their right to be involved in decision-making and noted feeling valued as a unique individual. Communication and trust between the patient and nurse were perceived as fundamental. However, shared decision-making does not always occur in practice. Nurses described tension in managing patients' involvement in decision-making. CONCLUSION: The findings demonstrate that although patients and community nurses appreciate participating in shared decision-making within the home, there are obstacles to achieving a collaborative process. This is especially relevant when there are fundamentally different perspectives on the decision being made. More research is needed to gain further understanding of how shared decision-making plays out in practice and to understand the tensions that patients and nurses may experience. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: This paper argues that shared decision-making is more than the development of a relationship where the patient can express their views (though of course, this is important). Shared decision-making requires acknowledgement that the patient has the right to full information and should be empowered to choose between options. Nurses should not assume that shared decision-making in community nursing is easy to facilitate and should recognize the tensions that might exist when true patient choice is enabled. IMPACT: This paper demonstrates how the idea of shared decision-making needs to be explored in the light of everyday practice so that challenges and barriers can be overcome. In particular, the tensions that arise when patients and nurses do not share the same perspective. This paper speaks to the potential of a gap surrounding shared decision-making in theory and how it plays out in practice. REPORTING METHOD: The reporting of this review was guided by the 2020 guidelines for the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (Page et al., 2021). PATIENT OR PUBLIC CONTRIBUTION: This review was carried out as part of a wider study for which service users have been consulted.

Exploring the impact of a digital health tool on patients' interaction with community pharmacists: A pilot randomized controlled study.

BACKGROUND: The use of digital Patient- Reported Outcomes (PRO) tools has been shown to enhance the exchange of information and shared decision-making in medical encounters. However, their influence on patient-pharmacist interactions has not yet been explored. OBJECTIVES: This study aimed to examine the impact of RxTalk™, a digital PRO tool, in supporting the communication between patients and pharmacists compared to usual care. METHODS: Intervention: RxTalk™ was developed to collect information about medication adherence and beliefs, using a tablet computer. STUDY DESIGN: A pilot randomized controlled study was conducted at a community pharmacy in Wisconsin, USA. Sixty patients were randomized to either the intervention group who used RxTalk™ during medication pick-up or the control group who did not use the tool. Patients who used RxTalk™ received paper copies of their responses which were also shared with pharmacists. The consultation was audio-recorded for both groups and coded using the Active Patient Participation Coding scale. Follow-up phone interviews were conducted with both groups within one week of enrollment. RESULTS: Patient tapes were analyzed. In the unadjusted model, patients in the intervention group had a higher active participation rate (p = 0.004) and raised significantly more concerns during consultations (p < 0.001) compared to the control group. Pharmacists asked twice as many questions while counseling patients in the intervention group compared to the control group (p < 0.001). After controlling for patients' demographics and pharmacists' questions, there was a statistical difference between the two patient groups in their odds of expressing at least one concern utterance. CONCLUSION: This pilot study suggests that collecting PRO from patients with chronic illnesses and providing results to pharmacists and patients can help patients express their health and medication concerns. RxTalk™ would be useful for pharmacists who wish to improve the recognition and management of medication-related problems.

Examining the role of pre-visit anxiety on patient uncertainty and breast cancer patient-provider communication.

OBJECTIVE: Effective communication between cancer patients and providers is critical for addressing psychological distress, reducing uncertainty, and promoting patient well-being. This is particularly relevant during medical appointments that may elicit uncertainty, such as surgical consultations for newly diagnosed women with breast cancer. This study aimed to evaluate how pre-appointment anxiety and illness uncertainty affect patient-provider communication in breast cancer surgical consultations and subsequent post-appointment well-being. Breast cancer patient anxiety has been studied as an outcome of provider communication, though less is known about the extent to which preexisting anxiety or uncertainty act as antecedents to effective patient-provider communication. METHODS: This study analyzed videorecorded breast cancer surgical consultations (N = 51) and corresponding patient surveys to understand how pre-appointment anxiety influences pre-appointment patient uncertainty, patient-provider communication during the appointment, and subsequent post-appointment uncertainty. RESULTS: The proposed model achieved good fit to the data such that more pre-appointment anxiety was associated with more pre-appointment uncertainty, more pre-appointment anxiety was associated with more empathic opportunities per minute, and more empathic opportunities were associated with less post-appointment uncertainty. CONCLUSIONS: Results indicate breast cancer patients with anxiety pre-appointment are at-risk for more illness uncertainty and are more likely to explicitly provide empathic opportunities. This supports the need for added attention to empathic opportunities to not only address patients emotionally but to also assess whether a patient may be at higher risk of having preexisting anxiety.

Patient engagement in a Canadian health research funding institute: implementation and impact.

BACKGROUND: Patient engagement (PE) or involvement in research is when patient partners are integrated onto teams and initiatives (not participants in research). A number of health research funding organisations have PE frameworks or rubrics but we are unaware of them applying and reporting on their own internal PE efforts. We describe our work at the Canadian Institutes of Health Research's Institute of Musculoskeletal Health and Arthritis (CIHR IMHA) to implement, evaluate and understand the impact of its internal PE strategy. METHODS: A co-production model was used involving patient partners, a PE specialist and staff from IMHA. A logic model was co-developed to guide implementing and evaluating IMHA's PE strategy. Some of evaluating the PE strategy and understanding its impact was a collaboration between the Public and Patient Engagement Collaborative (McMaster University) and IMHA. RESULTS: IMHA convened a PE Research Ambassador (PERA) group which co-led this work with the support of a PE specialist. In doing so, PERA had a number of meetings since 2020, set its own priorities and co-produced a number of outputs (video, publications, webinars, blog and modules called the How-to Guide for PE in Research). This work to evaluate and measure impacts of IMHA's PE strategy revealed positive results, for example, on PERA members, Institute Advisory Board members and staff, as well as beyond the institute based on uptake and use of the modules. Areas for improvement are mainly related to increasing the diversity of PERA and to improving accessibility of the PE outputs (more languages and formats). CONCLUSIONS: Implementing a PE strategy within CIHR IMHA resulted in several PE activities and outputs with impacts within and beyond the institute. We provide templates and outputs related to this work that may inform the efforts of other health research funding organisations. We encourage health research funders to move beyond encouraging or requiring PE in funded projects to fully 'walk the talk' of PE by implementing and evaluating their own PE strategies.

Effects of patient-based self-assessed fatigue intervention on early postoperative ambulation following gynaecological oncology surgery: a randomised controlled non-inferiority trial.

OBJECTIVES: To assess the impact of a patient-based self-assessed fatigue intervention aimed at promoting early postoperative ambulation. DESIGN: Prospective randomised controlled trial. SETTING: Single-centre, conducted at the Obstetrics and Gynaecology Department of the Xiangyang Central Hospital, China. PARTICIPANTS: Eligible were adult patients undergoing elective gynaecologic oncologic surgery. INTERVENTIONS: The intervention group utilised a modified Borg Rating of Perceived Experience (RPE) scale for self-assessment of fatigue levels. The control group followed fixed-activity distance guidelines postoperatively. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was the self-reported the time to first flatus postoperatively. Secondary outcomes encompassed the time to first defecation, incidence of moderate-to-severe abdominal distention, ileus, postambulation adverse events (nausea, vomiting and dizziness), patient satisfaction with early ambulation instructions, compliance with early ambulation and average hospital costs and length of stay. RESULTS: Between June 2021 and October 2022, 552 patients were enrolled. The self-assessed fatigue intervention group demonstrated non-inferior the time to first flatus compared with the fixed-activity distance assessment group (25.59±14.59 hours vs 26.10±14.19 hours, pnon-inferiority<0.001). Compliance with activity was higher in the intervention group (49.40% vs 36.02%, p<0.001), although it did not reach 50%. The intervention group also exhibited significantly higher mean hospital costs, length of stay and incidence of moderate-to-severe abdominal distention (p<0.001). CONCLUSIONS: The self-assessed fatigue intervention for early postoperative ambulation in gynaecologic oncology patients shows promise as an effective strategy; however, compliance is suboptimal. An intervention based on mandatory, yet reasonable, fixed-activity distance may represent the most viable current approach. Further research is warranted to confirm these findings. TRIAL REGISTRATION NUMBER: CTR2100046035.

Embedding the Use of Patient Multimedia Educational Resources Into Cardiac Acute Care: Prospective Observational Study.

BACKGROUND: Multimedia interventions may play an important role in improving patient care and reducing the time constraints of patient-clinician encounters. The "MyStay Cardiac" multimedia resource is an innovative program designed to be accessed by adult patients undergoing cardiac surgery. OBJECTIVE: The purpose of this study was to evaluate the uptake of the MyStay Cardiac both during and following the COVID-19 pandemic. METHODS: A prospective observational study design was used that involved the evaluation of program usage data available from the digital interface of the multimedia program. Data on usage patterns were analyzed for a 30-month period between August 2020 and January 2023. Usage patterns were compared during and following the lifting of COVID-19 pandemic restrictions. Uptake of the MyStay Cardiac was measured via the type and extent of user activity data captured by the web-based information system. RESULTS: Intensive care unit recovery information was the most accessed information, being viewed in approximately 7 of 10 usage sessions. Ward recovery (n=124/343, 36.2%), goal (n=114/343, 33.2%), and exercise (n=102/343, 29.7%) information were routinely accessed. Most sessions involved users exclusively viewing text-based information (n=210/343, 61.2%). However, in over one-third of sessions (n=132/342, 38.5%), users accessed video information. Most usage sessions occurred during the COVID-19 restriction phase of the study (August 2020-December 2021). Sessions in which video (P=.02, phi=0.124) and audio (P=.006, phi=0.161) media were accessed were significantly more likely to occur in the restriction phase compared to the postrestriction phase. CONCLUSIONS: This study found that the use of digital multimedia resources to support patient education was well received and integrated into their practice by cardiac nurses working in acute care during the COVID-19 pandemic. There was a pattern for greater usage of the MyStay Cardiac during the COVID-19 pandemic when access to the health service for nonfrontline, essential workers was limited.

Person-centred care intervention to promote self-efficacy in patients following a myocardial infarction (P2MIR): a protocol of a qualitative study for cultural adaptation within a Portuguese healthcare context.

INTRODUCTION: Cardiovascular diseases remain a leading cause of death worldwide. Recovery from myocardial infarction is challenging as the causes of symptoms span multiple aspects of health not just physical conditions. Evidence has shown a gap between the waycare is provided in the clinical setting and the person's needs and preferences. The implementation of person-centred care (PCC) interventions can promote recovery from myocardial infarction by allowing a greater understanding of the person's perception and its role on the overall recovering process. This study aims to culturally adapt an evidence-based PCC intervention to enhance self-efficacy in patients after myocardial infarction within a Portuguese healthcare context. METHODS AND ANALYSIS: The Portuguese person-centred care for myocardial infarction recovery (P2MIR) intervention is set to be developed from an evidence-based intervention, rooted in the ethics of PCC. An intervention of PCC for patients with acute coronary syndrome, which has been successfully implemented and evaluated in the Swedish healthcare context will be validated, culturally adapted and harmonised to the Portuguese healthcare context by using qualitative methods. To evaluate its acceptability, appropriateness and feasibility, a sample of stakeholders, consisting of a sample of healthcare professionals and a sample of people who suffered a myocardial infarction, will be recruited from a hospital, including both inpatient and outpatient departments. The stakeholders will be invited to semistructured focus group discussions, aiming to gather their perceptions about the P2MIR intervention, which will be previously presented to them. Data analysis will be conducted using content analysis following a deductive-inductive approach to further inform the intervention adaptation process to its final intervention in a Portuguese healthcare context. ETHICS AND DISSEMINATION: The study has been reviewed and approved by the Health Ethics' Committees of the Centro Hospitalar Lisboa Ocidental, Lisbon, Portugal (registry number 20170700050). The results will be disseminated through peer-reviewed journals and conference presentations.

Psychometric assessment of the Chinese adaptation of the patient participation scale targeting inpatients: a validation research.

Objective: The objective of this research was to introduce, translate, and verify the Patient Participation Scale (PPS) within a Chinese context. Methods: We applied a combination of internal consistency testing, item analysis, exploratory factor analysis, and confirmatory factor analysis. The research involved 453 individuals, comprising both outpatients and inpatients, across three Jinzhou Medical University-affiliated hospitals in China. Additionally, a subgroup of 50 patients underwent a retest after a 2-week interval to assess reliability. Results: The adapted Chinese edition of the PPS included 21 items. Exploratory factor analysis identified four distinct factors, accounting for 66.199% of the total variance. Confirmatory factor analysis supported a suitable four-factor structure ( χ / d f : 2.045, RMSEA: 0.048, GFI: 0.935, AGFI: 0.914, TLI: 0.958, CFI: 0.965, and PGFI: 0.712). The factor loadings corresponded to each item exceeded 0.6, the average variance extracted (AVE) exceeded 0.5, and the composite reliability (CR) exceeded 0.7. The correlation coefficients stayed below the square root of the AVE, demonstrated relatively favourable convergent and discriminant validity.The Chinese PPS edition demonstrated high internal consistency (Cronbach's alpha: 0.919), with dimensional Cronbach's alpha ranged from 0.732 to 0.918. Split-half as well as retest reliabilities were recorded at 0.737 and 0.864, respectively. The content validity index for the Chinese PPS edition stood at 0.974. Conclusion: The Chinese edition of the PPS emerges as a valid and reliable tool for assessing patient engagement in their own treatment as well as care, applicable in both inpatient as well as outpatient settings.

Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study.

Background: People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis. Objectives: (1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources. Design and methods: Work package 1 rapid scoping reviews - three reviews focused on the health and social care needs of older people with learning disabilities and 'behaviours that challenge others', and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice - analysis of published service standards to assess excellence criteria, by mapping services, interviews (n = 30), survey (n = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living (n = 4); residential/nursing home (n = 2); day activities (n = 1), Shared Lives (n = 2). Fieldwork (20 days per model), interviews (n = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 - co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 - three stakeholder workshops co-produced service recommendations. Findings: The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and 'behaviours that challenge others'. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. 'Planning Ahead' cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers' forum, a film, a podcast and academic papers. Conclusions: There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. 'Behaviours that challenge others' was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design. Limitations: The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families' plans, and therefore change, may be frustrated by insufficient service resources. Future work: Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die 'in place'; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the 'Planning Ahead' cards. Trial registration: This trial is registered as ISRCTN74264887. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.

People with learning disabilities are living longer, but most live with their families, who are also getting older. This is because there are not enough suitable places for people with learning disabilities to live, and family carers worry that the person will not get the right support and have a good life. Our research aimed to improve support for people with learning disabilities and their family carers to plan ahead for a good life. We focused on people who are labelled with 'behaviours that challenge others'. We read what has been written about this area. We looked for and found examples of excellent support for older people with learning disabilities. Researchers and people with learning disabilities and family carers spent time hanging out with people where they live or spend their days to see what support they get. Then we had three meetings with everyone involved and discussed our research findings with people with learning disabilities, family carers, and professionals. We found that people can be supported to live good lives as they grow older. This can be living alone or with people they choose, and it means having staff they like and who like them and being supported to be active. However, we found that ageing of people with learning disabilities is often ignored, and some people were not living good lives. We also found that the label of 'behaviours that challenge others' is unhelpful. We worked with people with learning disabilities and family carers to make a set of cards with pictures and questions to help people plan ahead for a good life. We produced resources and made recommendations to create a new plan for older people with learning disabilities to support people to lead good lives. This is very important because there is a lack of attention to and support for people with learning disabilities as they age.

Patient participation in surgical wound care in acute care settings: An integrative review.

BACKGROUND: Surgical site infections can significantly impact postoperative recovery. Patient participation, which involves patients actively engaging in wound care, has been linked to improved healing and reduced wound complications. However, there is limited synthesis of the literature that explores the patient's role and participation in the context of surgical wound care. OBJECTIVE: To explore patients' perceptions of how they participate in surgical wound care, within 30 days post-operation. DESIGN: An integrative review guided by Whittemore and Knafl's methodology. This review was registered with PROSPERO (CRD42022363669). DATA SOURCES: Searches were conducted in Medline (Ovid), CINAHL (Complete), and EMBASE (Elsevier) databases in October 2023, supplemented by forward and backward citation searching. REVIEW METHODS: Based on a priori eligibility criteria, two authors independently screened articles to select relevant studies. The quality of the included research articles was critically appraised using the Mixed Methods Appraisal Tool. A descriptive and thematic synthesis was used to synthesise the findings. RESULTS: Of the 4701 records screened for titles and abstracts, 25 studies using qualitative, quantitative, and mixed-methods designs were included. Three key themes were identified. In theme 1, 'I am healing: how my wound shapes me and my journey,' physical symptoms, psychological factors and previous experiences significantly influenced patients' engagement in wound care. Theme 2, 'Taking charge of my healing: my active engagement in wound care' described how patient participation in surgical wound care goes beyond clinical procedures and can include the use of technology and holistic self-care. Finally, theme 3, 'Navigating the path to recovery: How others shape my experience' showed that effective communication is crucial for promoting participation, yet issues like inadequate information can leave patients unprepared for wound management. CONCLUSIONS: This review highlights opportunities to personalise and prioritise a patient-oriented approach to surgical wound care. Clinicians and educators should adopt an individualised approach by tailoring patient participation based on patient factors (i.e. physical symptoms) and adopt patient-centred communication approaches. Researchers should focus on exploring approaches to self-care and technology, as these approaches may enhance patient participation in wound care.

Moving from Principle to Practice: A Researcher's Guide to Co-Leading Engaged Research with Community Partners and Patients with Lived Experience to Reduce Maternal Mortality and Morbidity for Maternal Sepsis.

OBJECTIVES: Maternal mortality and morbidity disproportionately affect birthing people from racialized populations. Unfortunately, researchers can often compound these poor outcomes through a lack of authentic community engagement in research beyond the role of the research subject, leading to ineffective strategies for improving care and increasing equity. This article details the real-life strategies utilized to develop a community-engaged research project of a phased federally funded grant employing community engagement principles of co-leadership and co-creation. It also includes reflections from the researchers and advisory board on promising practices and lessons learned for equitably engaging patients and community partners in research. METHODS: This article details the application of principles of community-engaged research in a federally funded phased research project focused on understanding disparities in maternal sepsis to develop better clinical and community interventions. Specifically, it discusses early steps in the research partnership to create a sustainable partnership with a Community Leadership Board guided by the principles of transparency, respect, compensation, and increasing research justice. RESULTS: Based on the authors' experience, recommendations are provided for funders, researchers, and institutions to improve the quality and outcomes of communityengaged research. This work adds to community-based participatory and community-engaged research literature by providing concrete and practical steps for equitably engaging in research partnerships with a variety of collaborators. CONCLUSIONS: In conclusion, integrated patient and community co-leadership enhances research by providing insight, access to communities for education and dissemination of information, and identifying critical areas needing change. This report may help others address fundamental principles in this journey.

Collaborating with cancer patients and informal caregivers in a European study on quality of life: protocol to embed patient and public involvement within the EUonQoL project.

BACKGROUND: Patient and public involvement (PPI) has become an essential part of health research. There is a need for genuine involvement in order to ensure that research is relevant to patients. This can then improve the quality, relevance, and impact of health research, while at the same time reducing wasted research and in doing so bringing science and society closer together. Despite the increasing attention for this involvement, it is not yet common practice to report on proposed activities. An article reporting planned PPI could provide guidance and inspiration for the wider academic community in future activities. Therefore, this current article aims to describe the way in which PPI principles are incorporated in the research project called "Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe (EUonQoL)." This project aims to develop a new set of questionnaires to enable cancer patients to assess their quality of life, entitled the EUonQoL-Kit. METHODS: The first step is to recruit cancer patients and their informal caregivers as co-researchers in order to train them to collaborate with the researchers. Based on their skills and preferences, they are then assigned to several of the project's work packages. Their individual roles, tasks, and responsibilities regarding the work packages, to which they have been assigned, are evaluated and adapted when necessary. The impact of their involvement is evaluated by both the researchers and co-researchers. DISCUSSION: PPI is a complex and dynamic process. As such, the overall structure of the research may be defined while at the same time leaving room for certain aspects to be filled in later. Our research is, we believe, relevant as co-researcher involvement in such a large European project as EUonQoL is a new development.