The association of cognitive coping style with patient preferences in a patient-led follow-up study among colorectal cancer survivors.

INTRODUCTION: Amidst the rising number of cancer survivors and personnel shortages, optimisation of follow-up strategies is imperative, especially since intensive follow-up does not lead to survival benefits. Understanding patient preferences and identifying the associated patient profiles is crucial. Coping style may be a key determinant in achieving this. Our study aims to evaluate preferences, identify coping styles and their associated factors, and explore the association between coping style and patients' preferences in colorectal cancer (CRC) follow-up. METHODS: In a prospective multicentre implementation study, patients completed the Threatening Medical Situations Inventory (TMSI) to determine their coping style. Simultaneously patients choose their follow-up preferences for the CRC trajectory regarding frequency of tumour marker determination, location of blood sampling, and manner of contact. RESULTS: A total of 188 patients completed the TMSI questionnaire after inclusion. A more intensive follow-up was preferred by 71.5% of patients. Of all patients, 52.0% had a coping style classified as 'blunting' and 34.0% as 'monitoring'. Variables such as a younger age, female gender, higher educational level, and lower ASA scores were associated with having higher monitoring scores. However, there were no significant associations between follow-up preferences and patients' coping styles. CONCLUSION: This study suggests that none of the provided options in a patient-led follow-up are unsuitable for patients who underwent curative surgery for primary CRC, based on coping style determined at baseline. Low-intensity surveillance after curative resection of CRC may, therefore, be suitable for a wide range of patients independent of coping styles.

Barriers and facilitators to integrated cancer care between primary and secondary care: a scoping review.

PURPOSE: This scoping review identifies and characterises reported barriers and facilitators to providing integrated cancer care reported in the international literature, and develops recommendations for clinical practice. METHODS: This scoping review included literature published between 2009 and 2022 and describes the delivery of integrated cancer care between primary and secondary care sectors. Searches were conducted of an online database Ovid Medline and grey literature. RESULTS: The review included thirty-two papers. Barriers and facilitators to integrated cancer care were identified in three core areas: (1) at an individual user level around patient-healthcare professional interactions, (2) at an organisational level, and (3) at a healthcare system level. The review findings identified a need for further training for primary care professionals on cancer care, clarity in the delineation of primary care and oncologist roles (i.e. who does what), effective communication and engagement between primary and secondary care, and the provision of protocols and guidelines for follow-up care in cancer. CONCLUSIONS: Information sharing and communication between primary and secondary care must improve to meet the increasing demand for support for people living with and beyond cancer. Delivering integrated pathways between primary and secondary care will yield improvements in patient outcomes and health economic costs.

An online evidence-based dictionary of common adverse events of antidepressants: a new tool to empower patients and clinicians in their shared decision-making process.

BACKGROUND: Adverse events (AEs) are commonly reported in clinical studies using the Medical Dictionary for Regulatory Activities (MedDRA), an international standard for drug safety monitoring. However, the technical language of MedDRA makes it challenging for patients and clinicians to share understanding and therefore to make shared decisions about medical interventions. In this project, people with lived experience of depression and antidepressant treatment worked with clinicians and researchers to co-design an online dictionary of AEs associated with antidepressants, taking into account its ease of use and applicability to real-world settings. METHODS: Through a pre-defined literature search, we identified MedDRA-coded AEs from randomised controlled trials of antidepressants used in the treatment of depression. In collaboration with the McPin Foundation, four co-design workshops with a lived experience advisory panel (LEAP) and one independent focus group (FG) were conducted to produce user-friendly translations of AE terms. Guiding principles for translation were co-designed with McPin/LEAP members and defined before the finalisation of Clinical Codes (CCs, or non-technical terms to represent specific AE concepts). FG results were thematically analysed using the Framework Method. RESULTS: Starting from 522 trials identified by the search, 736 MedDRA-coded AE terms were translated into 187 CCs, which balanced key factors identified as important to the LEAP and FG (namely, breadth, specificity, generalisability, patient-understandability and acceptability). Work with the LEAP showed that a user-friendly language of AEs should aim to mitigate stigma, acknowledge the multiple levels of comprehension in 'lay' language and balance the need for semantic accuracy with user-friendliness. Guided by these principles, an online dictionary of AEs was co-designed and made freely available ( https://thesymptomglossary.com ). The digital tool was perceived by the LEAP and FG as a resource which could feasibly improve antidepressant treatment by facilitating the accurate, meaningful expression of preferences about potential harms through a shared decision-making process. CONCLUSIONS: This dictionary was developed in English around AEs from antidepressants in depression but it can be adapted to different languages and cultural contexts, and can also become a model for other interventions and disorders (i.e., antipsychotics in schizophrenia). Co-designed digital resources may improve the patient experience by helping to deliver personalised information on potential benefits and harms in an evidence-based, preference-sensitive way.

Including 'Work as a Treatment Goal' in the Care for Patients with Chronic Diseases : The Development of a Generic Care Model-A Descriptive Study.

BACKGROUND: The Netherlands faces 60% prevalence of chronic conditions by 2040, impacting societal participation and quality of life. Current clinical care inadequately addresses these consequences, and most hospitals do not integrate occupational health in their care. OBJECTIVES: To develop a generic person- and work-oriented medical care model (WMCM) based on real life experiences with work-oriented care and supporting the chronically ill in active societal participation. METHODS: A qualitative research project with a participative approach in one hospital (November 2019 until March 2020). In an expert meeting, a schematic representation of a work-oriented care model was developed. Subsequent discussion rounds, with professionals from different patient groups, iteratively refined the model to a WMCM. RESULTS: Consensus was reached after seven rounds of discussion, defining the model's core elements (1) a combination of biomedical and biopsychosocial approaches, (2) involvement of a clinical occupational physician in the treatment team, (3) a coordinating role for nursing specialists, and (4) incorporation of a work-oriented intervention plan (WoIP) into the treatment plan. Advocating early attention to societal participation, the model emphasises the WoIP and consensus on monitoring indicators. The final goal is a sustainable return to societal participation, considering both quality of life and work. CONCLUSION: It is feasible to develop a generic person- and work-oriented care model for patients with chronic illness within a hospital care setting. Collaboration between healthcare professionals and a specialised occupational physician, with a central role for nurses, is deemed crucial.

What Should Personalised Mental Health Support Involve? Views of Young People with Lived Experience and Professionals from Eight Countries.

Research demonstrates that young people value mental health support that is tailored to their needs and preferences, rather than a "one size fits all" offer, which is often not equitably accessible (National Children's Bureau, 2021). Understanding young people's lived experiences across different sociocultural contexts is important. The aim of this research was to conduct an international qualitative study on the views of young people with lived experience and professionals, on proposed aspects of personalised support for anxiety and/or depression. Participatory action focus groups were conducted with N = 120 young people with lived experience of anxiety and/or depression (14-24 years) and with N = 63 professionals in Brazil, India, Kenya, Pakistan, Portugal, South Africa, Turkey, and the United Kingdom. Data were analysed using the rigorous and accelerated data reduction (RADaR) technique. Overall, although some country-specific differences were found in terms of what aspects of support young people found to be most important, individual preferences were considered stronger, furthering the view that support should be personalised to the needs of the individual young person. Young people experiencing anxiety and/or depression should be able to choose for themselves which aspects of support they would prefer in their own care and support plans, with families and mental health professionals providing guidance where appropriate, rather than removing the young person from the decision-making process altogether. It should also be ensured that the aspects of personalised support can be understood by young people and professionals from different contexts, including marginalised and minoritised groups and communities.

Cancer Biomarkers in the era of precision oncology: Addressing the needs of patients and health systems.

Cancer Biomarkers are the key to unlocking the promise of precision oncology, selecting which patients will respond to a more personalised treatment while sparing non-responders the therapy-related toxicity. In this paper, we highlight the primacy of cancer biomarkers, but focus on their importance to patients and to health systems. We also highlight how cancer biomarkers represent value for money. We emphasise the need for cancer biomarkers infrastructure to be embedded into European health systems. We also highlight the need to deploy multiple biomarker testing to deliver the optimal benefit for patients and health systems and consider cancer biomarkers from the perspective of cost, value and regulation. Cancer biomarkers must also be situated in the context of the upcoming In Vitro Diagnostics Regulation, which may pose certain challenges (e.g. non-compliance of laboratory developed tests, leading to cancer biomarker shortages and increased costs) that need to be overcome. Cancer biomarkers must be embedded in the real world of oncology delivery and testing must be implemented across Europe, with the intended aim of narrowing, not widening the inequity gap for patients. Cancer patients must be placed firmly at the centre of a cancer biomarker informed precision oncology care agenda.

The short-term impact of non-removable offloading devices on quality of life in people with recurrent diabetic foot ulcers.

OBJECTIVE: Recurrent diabetic foot ulcers (DFUs) are associated with poor health-related quality of life and reduced mobility. Current guidelines recommend application of non-removable offloading devices (NROLDs) as they may improve the healing of DFUs, but there is a lack of information on the wider effects of wearing these devices. Few studies have examined the impact of NROLDs on holistic wellbeing or physical activity. We aimed to investigate the short-term impact of NROLDs on physical activity and DFU-related quality of life (DFU-QoL) in a small sample of community-dwelling people with recurrent DFUs. METHOD: We measured DFU-QoL and physical activity (GPAQ) in people with DFUs, recruited from a single clinic before NROLD application, and at three and six weeks after device fitting. Participants were aged from 39-81 years (mean 58.4±10.1 years) with an equal number of male and female participants. RESULTS: The study cohort comprised 18 participants, of whom 14 (78%) completed six-week questionnaires. Although there was some interim decline observed within individual domains of the DFU-QoL (financial: mean difference (MD) 16.2 (95% confidence interval (CI) 2.1, 30.2); p=0.03); non-compliance: MD 12.5 (95% CI-0.2, 25.2); p=0.05), no differences were observed over six weeks. Levels of physical activity declined over time, with over half (56%) of participants classified as having low levels of physical activity at baseline, rising to two-thirds (67%) at follow-up. CONCLUSION: Future studies should explore the longer-term holistic impact of NROLDs and develop more personalised approaches to care at the point of prescription, during and post-device use.

Healthy Ageing: A Decision-Support Algorithm for the Patient-Specific Assignment of ICT Devices and Services.

In response to rapid population ageing, digital technology represents the greatest resource in supporting the implementation of active and healthy ageing principles at clinical and service levels. However, digital information platforms that deliver coordinated health and social care services for older people to cover their needs comprehensively and adequately are still not widespread. The present work is part of a project that focuses on creating a new personalised healthcare and social assistance model to enhance older people's quality of life. This model aims to prevent acute events to favour the elderly staying healthy in their own home while reducing hospitalisations. In this context, the prompt identification of criticalities and vulnerabilities through ICT devices and services is crucial. According to the human-centred care vision, this paper proposes a decision-support algorithm for the automatic and patient-specific assignment of tailored sets of devices and local services based on adults' health and social needs. This decision-support tool, which uses a tree-like model, contains conditional control statements. Using sequences of binary divisions drives the assignation of products and services to each user. Based on many predictive factors of frailty, the algorithm aims to be efficient and time-effective. This goal is achieved by adequately combining specific features, thresholds, and constraints related to the ICT devices and patients' characteristics. The validation was carried out on 50 participants. To test the algorithm, its output was compared to clinicians' decisions during the multidimensional evaluation. The algorithm reported a high sensitivity (96% for fall monitoring and 93% for cardiac tracking) and a lower specificity (60% for fall monitoring and 27% for cardiac monitoring). Results highlight the preventive and protective behaviour of the algorithm.

Art of connectedness: Value-creating care for older persons provided with toileting assistance and containment strategies-A critical interpretive synthesis.

AIMS AND OBJECTIVES: The aim was to conduct a synthesis of the literature on value-creating care for older persons with incontinence provided with toileting assistance and containment strategies, from the perspectives of older persons and healthcare professionals. BACKGROUND: Incontinence is a health problem for many persons worldwide and the problem will increase as the global population ages. It can have a profound impact on a person's wellbeing, and assistance with toileting and containment strategies is common in home care settings and nursing homes. DESIGN: The design was a literature review with an iterative, reflexive and critical approach. METHODS: A critical interpretive synthesis was conducted. Ten papers published between 2011 and 2019 were analysed. The PRISMA -ScR Checklist was used in this review. RESULTS: Based on the findings, the conceptual construct 'The art of connectedness' was developed, built on co-created care, personalised care and reflective care between the older person and healthcare professionals. Co-created care is based on establishing a relationship, building trust and respecting preferences. Personalised care consists of meeting the person's needs, promoting comfort and maintaining self-determination. Reflective care entails showing empathy, upholding the person's dignity and developing professional competence. CONCLUSIONS: Value-creating care consists conceptually of a connectedness that starts with co-creating the care together with the older person in a close relationship. Assistance is given and received based on the older person's individual needs and is highly valued by the older person as it helps them maintain self-determination. Reflective care is of importance for healthcare professionals. RELEVANCE FOR PRACTICE: The findings are hoped to enhance healthcare professionals' understanding of how to improve the clinical encounter in nursing when providing assistance. They may also stimulate critical reflection among healthcare professionals on how to improve assistance to meet the older person's values.

Perspectives of people with Parkinson's disease and family carers about disease management in community settings: A cross-country qualitative study.

AIM: To explore perceptions of people with Parkinson's disease and family carers about the use and impact of health and social care services, community and voluntary sector resources for the management of Parkinson's disease. BACKGROUND: Resources from outside the formal health care system and collaborations between different levels and sectors could address the unmet needs of people with Parkinson's disease and their family carers and improve the management of Parkinson's disease in the community setting. DESIGN: A qualitative exploratory study was carried out in Denmark, Norway, Spain and the United Kingdom and was reported using the COREQ. METHODS: Individual semi-structured interviews were conducted with people with Parkinson's disease and family carers between May and August 2020. Interviews were digitally recorded, transcribed verbatim and analysed using thematic analysis. A meta-ethnographic approach was used to analyse and synthesise cross-national findings. RESULTS: Forty-seven people with Parkinson's disease and 39 family carers participated in the four countries. Four themes and eight sub-themes emerged: (1) Personalised care for needs throughout the Parkinson's disease journey; (2) Accessibility of different types of support systems (including initiatives to support emotional well-being, physical rehabilitation, information on the healthcare services, voluntary associations and community groups); (3) Multiagency collaborations, a more comprehensive approach; (4) Acknowledgment of people with Parkinson's and family carers own role in Parkinson's disease management. CONCLUSIONS: An integrated and person-and-community-centred approach, which includes the participation of the health, social, voluntary and community sectors, is desired by people with Parkinson's disease and their family carers to improve the management of Parkinson's in the community setting. These findings could contribute to the creation of more sustainable care systems at the European level that would better respond to individual and changing needs in people with Parkinson's disease and their family carers, and in other long-term conditions. PATIENT OR PUBLIC CONTRIBUTION: The Patient and Public Involvement groups contributed to the design of the study, the interview guides and validation of findings. RELEVANCE TO CLINICAL PRACTICE: This study will inform the management of Parkinson's disease at the community level and the use of resources not only directly linked to the health system. Taking into account all the actors that provide care and support to people with Parkinson' disease and family carers facilitates the creation of strategies that better respond to individual needs. Nurses and other health and social care professionals in the community and specialist levels of care should collaborate to develop multisectoral strategies that promote personalised and integrated care throughout the Parkinson's journey.

Implementing personalised care planning for older people with frailty: a process evaluation of the PROSPER feasibility trial.

BACKGROUND: Personalised Care Planning (PCP) is a collaborative approach used in the management of chronic conditions. Core components of PCP are shared decision making to achieve joint goal setting and action planning by the clinician and patient. We undertook a process evaluation within the PROSPER feasibility trial to understand how best to implement PCP for older people with frailty in the community. METHODS: The trial was set in two localities in England. We observed training sessions and intervention delivery at three time points during the 12-week intervention period. We interviewed delivery teams before, during and after the intervention period, as well as primary care staff. We interviewed older people who had received, declined or withdrawn from PCP. We explored training of staff delivering PCP, structures, mechanisms and resources needed for delivery, and influences on uptake. We undertook a framework approach to data analysis. FINDINGS: We observed thirteen training sessions and interviewed seven delivery staff, five primary care staff, and twenty older people, including seven who had declined or withdrawn from the intervention. Delivery teams successfully acquired skills and knowledge, but felt underprepared for working with people with lower levels of frailty. Timing of training was critical and 'top-ups' were needed. Engagement with primary care staff was tenuous. Older people with lower frailty were unclear of the intervention purpose and benefits, goal setting and action planning. CONCLUSIONS: PCP has the potential to address the individualised needs of older people with frailty. However, training requires careful tailoring and is ideally on-going. Considerable efforts are required to integrate statutory and voluntary stakeholders, understanding the expectations and contributions of each agency from the outset. In addition, older people with frailty need time and support to adjust to new ways of thinking about their own health now and in the future so they can participate in shared decision making. These key factors will be essential when developing models of care for delivering PCP to support older people with frailty to sustain their independence and quality of life. TRIAL REGISTRATION: ISRCTN 12,363,970 - 08/11/2018.

Musculoskeletal care - at the confluence of data science, sensors, engineering, and computation.

Data has always been integral to modern medicine in almost all aspects of patient care and the recent proliferation of data has opened up innumerable opportunities for all the stakeholders in trying to improve the quality of care and health outcomes including quality of life and rehabilitation. Greater usage and adoption of digital technologies have led to the convergence of health data in different forms - clinical, self-reported, electronic health records social media, etc. The application and utilization of patient data set continue to get broadened each day with greater availability and access. These are empowering newer cutting-edge solutions such as connected care and artificial intelligence, 3D printing and real-life mimicking prosthetics. The availability of data at micro and macro levels has the potential to act as a catalyst for personalized care based on behavioral, cultural, genetic, and psychological needs for patients with musculoskeletal disorders. Realistic algorithms coupled with biomarkers which can identify relevant interventions and alert the care providers regarding any deterioration. Although in the nascent stage currently, 3D printing, exoskeletons, and virtual rehabilitation hold tremendous potential of cost-effective, precise interventions for the patients.

Moving with technological advancements: blood glucose monitoring from a district nurse's perspective.

Capillary blood glucose monitoring is a standard safety protocol before administering insulin. Over the past 12 months, there has been a notable increase in patients under the district nursing service using a flash glucose sensor (FGS), which is a portable technological device inserted into the skin via a stamp-like mechanism. The device sits in the interstitial fluid under the skin; the device can be scanned using a sensor to obtain glucose readings, which can eliminate the need for capillary finger pricking. From experience, some people opt for this device, considering the pain and inconvenience associated with capillary finger pricking. Despite some patients already utilising FGS, some community teams may still have to take a capillary finger prick before insulin administration, depending on local trust policy. Interestingly, while looking into the reasons for this, one discovered some contradictory concerns over the safety of FGS due to a difference in time lag, where interstitial fluid readings differ from blood glucose readings. However, new national guidelines reflect the push towards this technological innovation that could revolutionise patient care in glucose monitoring and diabetes management.

Real World Practice Deviation from Nationwide Guidelines in Patients with Intermittent Claudication.

OBJECTIVE: Patients with intermittent claudication (IC) are initially treated with supervised exercise therapy (SET), as advised by national and international guidelines. Dutch health insurance companies and the Dutch National Health Care Institute suggested an 87% compliance rate with these guidelines in the Netherlands in 2017 and judged this to be undesirably low. The aim of this study was to evaluate compliance with IC guidelines and to elaborate on the reasons for deviating from them (practice variation) in a large teaching hospital. METHODS: A retrospective single centre cohort study was conducted at a large teaching hospital in the Netherlands. In total, 420 patients with newly diagnosed IC between 1 January 2017 and 31 December 2018 were analysed. Data included risk profiles and prescribed therapies. RESULTS: For all 420 included patients, the compliance rate with the guidelines for SET was 80.5%. The rate of adequately motivated and defensible practice variation was 15.7%; the rate of unjustified practice variation was 3.8%. Meaningful care was seen in 96.2% of cases. CONCLUSION: Deviation from IC guidelines was found in 19.5% of patients. Almost three quarters of this deviation can be explained by the decision to provide personalised, meaningful care.

Patient-reported outcome measures in oncology: a qualitative study of the healthcare professional's perspective.

BACKGROUND: In the last decades, the number of cancer survivors has increased significantly due to improved treatment and better detection of recurrence. This increased survival redirects the scope from survival towards optimising functional outcomes and improving health-related quality of life (HRQol). Functional and HRQoL outcomes can be assessed with patient-reported outcome measures (PROMs). However, the use of PROMs in daily oncological care is not common. This qualitative study investigates the barriers and facilitators of PROM use in an oncological setting, from the perspective of the healthcare professionals (HCPs). METHODS: Individual semi-structured interviews were conducted among Dutch oncological HCPs. Barriers and facilitators of PROM implementation were identified on various levels of the healthcare system (i.e. level of the patient, individual professional, medical team, and healthcare organisation). Interviews were audio recorded and transcribed verbatim. Transcripts were manually analysed by two independent reviewers using a thematic approach. Identified barriers and facilitators were categorised into Grol and Wensing's framework for changing healthcare practice. RESULTS: Nineteen oncological HCPs working in academic and non-academic hospitals were interviewed. Barriers for PROM implementation were lack of good IT support, lack of knowledge on how to use PROMs, lack of time to complete and interpret PROMs, and a high administrative burden. PROM implementation can be facilitated by providing clear guidance regarding PROM interpretation, evidence that PROMs can save time, and stimulating multidisciplinary teamwork. CONCLUSION: From a HCP point of view, adequately functioning IT technology, sufficient knowledge on PROMs, and dedicated time during the consultation are essential for successful implementation of PROMs in oncological care. Additional local context-specific factors need to be thoroughly addressed.

Follow-up after breast cancer: Variations, best practices, and opportunities for improvement according to health care professionals.

OBJECTIVE: Follow-up after breast cancer can be divided into surveillance and aftercare. It remains unclear how follow-up can ideally be organised from the perspective of health care professionals (HCPs). The aim of this study was to gain insight in the organisation of follow-up in seven Dutch teaching hospitals and to identify best practices and opportunities for improvement of breast cancer (all stages) follow-up as proposed by HCPs. METHODS: Semi-structured in-depth group interviews were performed, one in each of the participating hospitals, with in total 16 HCPs and 2 patient advocates. To describe the organisation of follow-up, transcripts were analysed using a deductive approach. Best practices and opportunities were derived using an inductive approach. RESULTS: Variation was found in the organisation of aftercare, especially in timing, frequency, and disciplines of involved HCPs. Less variation was observed for surveillance, which was guided by the national guideline. Best practices focused on case management and adequate collaboration between HCPs of different disciplines. Mentioned opportunities were improving the structured monitoring of patients' needs and a comprehensive guideline for organisation and content of aftercare. CONCLUSIONS: Variation in follow-up existed between hospitals. Shared decision-making (SDM) about surveillance is desirable to ensure that surveillance matches the patient needs, preferences, and personal risk for recurrences.

A novel care guide for personalised palliative care - a national initiative for improved quality of care.

BACKGROUND: Even when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliative care needs. A care guide can act as a compass for best practice and support the care of patients throughout their palliative trajectory. Such a guide should both meet the needs of health care professionals and patients and families, facilitating discussion around end-of-life decision-making and enabling them to plan for the remaining time in life. The aim of this article is to describe the development and pilot testing of a novel Swedish palliative care guide. METHODS: The Swedish Palliative Care Guide (S-PCG) was developed according to the Medical Research Council framework and based on national and international guidelines for good palliative care. An interdisciplinary national advisory committee of over 90 health care professionals together with patient, family and public representatives were engaged in the process. The feasibility was tested in three pilot studies in different care settings. RESULTS: After extensive multi-unit and interprofessional testing and evaluation, the S-PCG contains three parts that can be used independently to identify, assess, address, follow up, and document the individual symptoms and care-needs throughout the whole palliative care trajectory. The S-PCG can provide a comprehensive overview and shared understanding of the patients' needs and possibilities for ensuring optimal quality of life, the family included. CONCLUSIONS: Based on broad professional cooperation, patients and family participation and clinical testing, the S-PCG provides unique interprofessional guidance for assessment and holistic care of patients with palliative care needs, promotes support to the family, and when properly used supports high-quality personalised palliative care throughout the palliative trajectory. Future steps for the S-PCG, entails scientific evaluation of the clinical impact and effect of S-PCG in different care settings - including implementation, patient and family outcomes, and experiences of patient, family and personnel.

Taking into account patient preferences in personalised care: Blending types of nursing knowledge in evidence-based practice.

AIMS AND OBJECTIVES: To explore how excellent nurses in hospitals take into account patient preferences in nursing decision-making in the evidence-based practice towards personalised care. BACKGROUND: In evidence-based practice, nursing decision-making is based on scientific evidence, evidence of best practice and individual patient preferences. Little is known about how nurses in hospitals take into account patient preferences in nursing decision-making. DESIGN: Qualitative grounded theory. METHODS: Data collection entailed 27 semi-structured interviews with nurses designated by their colleagues as excellent caregivers, followed by 57 hours of participant observation. Data analysis was conducted using three-level coding with constant comparison and theoretical sampling. The COREQ checklist for qualitative research was followed. RESULTS: A main finding was that participants used three implicit tools to discover patient preferences: establishing a connection, using antennae and asking empathic questions, thus instantly reassuring patients from the very first contact. Their starting point in care was the patient's perception of quality of life wherein they shifted towards their patient's perspective: "Teach me to provide the best care for you in this situation." During the observations, it was confirmed that the excellent nurses behaved as they had described before. CONCLUSION: Excellent nurses actively turn towards patients' expectations and experienced quality of life by carefully blending individual sensitive and situation specific patient preferences with scientific evidence and evidence of best practice. In doing so, they are able to balancing more equally patient preferences in to the equation called evidence-based practice, thus leading to wise decision-making in personalised nursing care. RELEVANCE TO CLINICAL PRACTICE: Patient preferences become a fully fledged part of nursing decision-making in EBP when in education and practice, the implicit knowledge of excellent nurses about how to take into account patient preferences to provide personalised care is more valued and taught.

Doing time in an Australian ICU; the experience and environment from the perspective of patients and family members.

BACKGROUND: The intensive care environment and experiences during admission can negatively impact patient and family outcomes and can complicate recovery both in hospital and after discharge. While their perspectives based on intimate experiences of the environment could help inform design improvements, patients and their families are typically not involved in design processes. Rather than designing the environment around the needs of the patients, emphasis has traditionally been placed on clinical and economic efficiencies. OBJECTIVE: The main objective was to inform design of an optimised intensive care bedspace by developing an understanding of how patients and their families experience the intensive care environment and its impact on recovery. METHODS: A qualitative descriptive study was conducted with data collected in interviews with 17 intensive care patients and seven family members at a large cardiothoracic specialist hospital, analysed using a framework approach. RESULTS: Participants described the intensive care as a noisy, bright, confronting and scary environment that prevented sleep and was suboptimal for recovery. Bedspaces were described as small and cluttered, with limited access to natural light or cognitive stimulation. The limited ability to personalise the environment and maintain connections with family and the outside world was considered especially problematic. CONCLUSIONS: Intensive care patients described features of the current environment they considered problematic and potentially hindering their recovery. The perspective of patients and their families can be utilised by researchers and developers to improve the design and function of the intensive care environment. This can potentially improve patient outcomes and help deliver more personalised and effective care to this vulnerable patient population and their families.

The intensive care unit environment from the perspective of medical, allied health and nursing clinicians: A qualitative study to inform design of the 'ideal' bedspace.

BACKGROUND: While the impact of the intensive care environment on patients' experiences and outcomes has been extensively studied, relatively little research has examined the impact on clinicians and their provision of care in the intensive care unit (ICU). Understanding staff experience and views about the environment is needed to optimise the ICU environment, patient outcomes and staff wellbeing. OBJECTIVE: The objective of this study was to inform design of an optimised intensive care bedspace by describing clinicians' views about the current environment, including experience, impact on performance of clinical duties, and experience and outcomes of patients and family members. METHODS: A pragmatic, qualitative descriptive study was conducted, with data collected in focus groups and interviews with 30 intensive care clinicians at a large cardiothoracic specialist hospital and analysed using the framework approach. RESULTS: Participants acknowledged that the busy and noisy ICU provided a suboptimal healing environment for patients, was confronting for visiting families and exposed clinicians to risk of psychological injury. The bedspace, described as small and cluttered, hindered provision of clinical care of various kinds and contributed to an increased risk of staff physical injuries. Participants noted that the bland, sterile environment, devoid of natural light and views of the outside world, negatively affected both staff and patients' mood and motivation. Aware of the potential benefits of natural light, cognitive stimulation and visually appealing environments for patients and families, clinicians were frustrated by their inability to personalise the bedspace. Some participants, while acknowledging the importance of family contact for patients, were concerned about the impact of visitors on care delivery, particularly within already crowded bedspaces, suggesting restrictions on visiting. CONCLUSIONS: Intensive care clinicians perceive that the current intensive care environment is suboptimal for patients, their families and staff and may contribute to suboptimal patient outcomes. The intensive care bedspaces need to be redesigned to ensure they are built around the needs of the people using them. Optimisation is dependent on engaging all stakeholders in future design processes.