The Delphi of ORACLE: An Expert Consensus Survey for the Development of the Observational Risk Assessment of Contractures (Longitudinal Evaluation).

OBJECTIVE: Despite rising prevalence rates, no standard tool is available to identify individuals at risk of developing contractures. This study aimed to gain expert consensus on items for the development of the Observational Risk Assessment Tool for Contractures: Longitudinal Evaluation (ORACLE) for care home residents. DESIGN: A two-round, online modified Delphi study. PARTICIPANTS: Panellists were qualified healthcare professionals with a background in physiotherapy, occupational therapy, nursing, and rehabilitation medicine. MAIN OUTCOME MEASURES: In the first round, the experts were asked to rate the predesigned list of items on a Likert scale while in the second round, consensus was sought in the areas of disagreement identified in the previous round. RESULTS: The two rounds of the Delphi survey included 30 and 25 panellists, respectively. The average clinical and academic experience of the panellists was 22.2 years and 10.5 years, respectively. The panel demonstrated a high level of consensus regarding the clinical factors (10 out of 15 items); preventive care approaches (9 out of 10 items), and contextual factors (12 out of 13 items) ranging from 70% to 100%. CONCLUSION: This Delphi study determined expert consensus on items to be included in a contracture risk assessment tool (ORACLE). The items were related to factors associated with joint contractures, appropriate preventive care interventions, and potentially relevant contextual factors associated with care home settings. The promise of a risk assessment tool that includes these items has the capacity to reduce the risk of contracture development or progression and to trigger timely and appropriate referrals to help prevent further loss of function and independence.

Common health assets protocol: a mixed-methods, realist evaluation and economic appraisal of how community-led organisations (CLOs) impact on the health and well-being of people living in deprived areas.

INTRODUCTION: This research investigates how community-led organisations' (CLOs') use of assets-based approaches improves health and well-being, and how that might be different in different contexts. Assets-based approaches involve 'doing with' rather than 'doing to' and bring people in communities together to achieve positive change using their own knowledge, skills and experience. Some studies have shown that such approaches can have a positive effect on health and well-being. However, research is limited, and we know little about which approaches lead to which outcomes and how different contexts might affect success. METHODS AND ANALYSIS: Using a realist approach, we will work with 15 CLOs based in disadvantaged communities in England, Scotland and Northern Ireland. A realist synthesis of review papers, and a policy analysis in different contexts, precedes qualitative interviews and workshops with stakeholders, to find out how CLOs' programmes work and identify existing data. We will explore participants' experiences through: a Q methodology study; participatory photography workshops; qualitative interviews and measure outcomes using a longitudinal survey, with 225 CLO participants, to assess impact for people who connect with the CLOs. An economic analysis will estimate costs and benefits to participants, for different contexts and mechanisms. A 'Lived Experience Panel' of people connected with our CLOs as participants or volunteers, will ensure the appropriateness of the research, interpretation and reporting of findings. ETHICS AND DISSEMINATION: This project, research tools and consent processes have been approved by the Glasgow Caledonian University School of Health and Life Sciences Ethics Committee, and affirmed by Ethics Committees at Bournemouth University, Queen's University Belfast and the University of East London. Common Health Assets does not involve any National Health Service sites, staff or patients.Findings will be presented through social media, project website, blogs, policy briefings, journal articles, conferences and visually in short digital stories, and photographic exhibitions.

Factors associated with joint contractures in adults: a systematic review with narrative synthesis.

PURPOSE: The primary objective of the review was to collate the available evidence on factors associated with joint contractures in adults. METHODS: A systematic literature search was conducted on MEDLINE, CINAHL, AMED, and EMBASE. Studies that involved participants aged ≥18 and assessed joint contracture as a primary or secondary outcome were included. Two independent reviewers screened studies against the eligibility criteria, performed data extraction, and assessed the quality of evidence. A narrative synthesis by domain and sub-domain was undertaken. The protocol was registered on PROSPERO: CRD42019145079. RESULTS: Forty-seven studies were included in the review. Identified factors were broadly classified into three major domains: sociodemographic factors, physical factors, and proxies for bed confinement. Sociodemographic factors were not associated with joint contractures. Functional ability, pain, muscle weakness, physical mobility, and bed confinement provided the most consistent evidence of association with joint contractures. The evidence regarding the relationship between spasticity and joint contractures remains unclear. Other factors might be important, but there was insufficient evidence to make inferences. CONCLUSIONS: The review identified and collated evidence on factors associated with joint contractures, which can be utilised to develop effective prevention and management strategies. Implications for rehabilitationClinical interventions based on the timely identification of risks related to joint contractures in vulnerable adults have the potential to prevent or ameliorate their development or progression.Quality and consistency of care for vulnerable adults would be enhanced by developing effective joint contracture prevention and rehabilitation strategies based on the evidence presented in this review.As many vulnerable adults are located in the community or non-acute care settings, strategies should target these loci of care.Structured risk assessments that can support non-physiotherapy staff working in these loci of care to identify risks related to joint contractures would provide an important resource for risk management.

Understanding advance care planning in care homes throughout the COVID-19 pandemic: A critical realist review and synthesis.

BACKGROUND: The COVID-19 pandemic has disrupted advance care planning discussions in care homes, particularly discussions involving relatives and surrogate decision makers. There is a need to collate and examine current evidence to assess the extent of the problem. AIM: To examine the processes and experiences involved in advance care planning in care homes throughout the COVID-19 pandemic. DESIGN: A critical realist review and synthesis. DATA SOURCES: MEDLINE, psycINFO, SCOPUS and CINAHL were searched between December 2019 and May 2022. RESULTS: Eleven studies were included. Communication difficulties associated with remote technologies meant that care home staff's concerns about engaging effectively with relatives further exacerbated the emotional toll of dealing with high death rates in circumstances where staff shortages stretched the capacity of those remaining to provide timely advance care planning discussions. The threat of the pandemic tended to encourage earlier and more frequent advance care planning discussions, though this tendency was partially countervailed by the difficulties that some residents and relatives had in engaging with remote communication modes. There was evidence that education and training in advance care planning increased staff's confidence and readiness to engage in care planning during pandemic conditions. CONCLUSION: Results highlight part of the new context facing staff, relatives and residents in care homes, thus providing valuable insight for future intervention development required to maintain and improve the effectiveness of advance care planning in care homes during and beyond the pandemic.

Developing an Evidence and Theory Based Multimodal Integrative Intervention for the Management of Renal Cachexia: A Theory of Change.

In this study, we aimed to develop a theoretical framework for a multimodal, integrative, exercise, anti-inflammatory and dietary counselling (MMIEAD) intervention for patients with renal cachexia with reference to how this addresses the underlying causal pathways for renal cachexia, the outcomes anticipated, and how these will be evaluated. We used a Theory of Change (ToC) approach to guide six steps. Step 1 included inputs from a workshop to obtain key stakeholder views on the potential development of a multimodal intervention for renal cachexia. Step 2 included the findings of a mixed-methods study with Health Care Practitioners (HCPs) caring for individuals with End Stage Kidney Disease (ESKD) and cachexia. Step 3 included the results from our systematic literature review on multimodal interventions for cachexia management. In step 4, we used the body of our research team's cachexia research and wider relevant research to gather evidence on the specific components of the multimodal intervention with reference to how this addresses the underlying causal pathways for renal cachexia. In steps 5 and 6 we developed and refined the ToC map in consultation with the core research team and key stakeholders which illustrates how the intervention components of MMIEAD interact to achieve the intended long-term outcomes and anticipated impact. The results of this study provide a theoretical framework for the forthcoming MMIEAD intervention for those with renal cachexia and in subsequent phases will be used to determine whether this intervention is effective. To the best of our knowledge no other multimodal intervention trials for cachexia management have reported a ToC. Therefore, this research may provide a useful framework and contribute to the ongoing development of interventions for cachexia management.

Exploring the lived experience of renal cachexia for individuals with end-stage renal disease and the interrelated experience of their carers: Study protocol.

Renal cachexia is an important consideration in the person-centred care that is needed in end-stage renal disease (ESRD). However, given that clinical guidelines relating to renal cachexia are largely absent, this is an unmet care need. To inform guidelines and future renal service planning, there is an urgency to understand individuals' experiences of renal cachexia and the interrelated experiences of the carers in their lives. We report here the protocol for an interpretative phenomenological study which will explore this lived experience. A purposive sampling strategy will recruit individuals living with ESRD who have cachexia and their carers. A maximum of 30 participants (15 per group) dependent on saturation will be recruited across two nephrology directorates, within two healthcare trusts in the United Kingdom. Individuals with renal cachexia undergoing haemodialysis will be recruited via clinical gatekeepers and their carers will subsequently be invited to participate in the study. Participants will be offered the opportunity to have a face-to-face, virtual or telephone interview. Interviews will be audio-recorded, transcribed verbatim and analysed using interpretative phenomenological analysis. NVivo, will be used for data management. Ethical approval for this study was granted by the Office for Research Ethics Committees Northern Ireland (REC Reference: 22/NI/0107). Scientific evidence tends to focus on measurable psychological, social and quality of life outcomes but there is limited research providing in-depth meaning and understanding of the views of individuals with renal disease who are experiencing renal cachexia. This information is urgently needed to better prepare healthcare providers and in turn support individuals with ESRD and their carers. This study will help healthcare providers understand what challenges individuals with ESRD, and their carers face in relation to cachexia and aims to inform future clinical practice guidelines and develop supportive interventions which recognise and respond to the needs of this population.

Impact of the COVID-19 pandemic on end of life care delivery in care homes: A mixed method systematic review.

BACKGROUND: Current evidence suggests that COVID-19 is having a negative impact on the delivery of end of life care in care homes around the world. There is a need to collate current evidence to provide a comprehensive overview to assess extent of the problem. AIM: To describe and evaluate the impact of the COVID-19 pandemic on end of life care delivery in care homes. DESIGN: Systematic review and narrative synthesis of studies reporting qualitative and quantitative data. DATA SOURCES: The databases MEDLINE, psycINFO, SCOPUS and CINAHL were searched between December 2019 and March 2021. RESULTS: Nine studies were included. For care home staff, challenges included significant increases in responsibility and exposure to death, both of which have taken an emotional toll. Results indicate that staff tended not to be offered adequate emotional support or afforded the time to grieve. For those receiving end of life care, results indicate that the end of life care that they tended to receive, especially in the form of advance planning, was disrupted by the pandemic. CONCLUSION: The effect of the pandemic has been to exacerbate existing problems in the provision of end of life care in care homes for both service providers and users, making that which was previously opaque starkly visible. Future research is needed to explore the effects of the pandemic and its management on those receiving end of life care in care homes and their significant others.

A critical realist evaluation of advance care planning in care homes.

AIMS: To evaluate care planning in advance of end-of-life care in care homes. DESIGN: A qualitative study. METHODS: Qualitative data were collected from January 2018-July 2019 (using focus groups and semi-structured interviews) from three care homes in the South West of England. The data were analysed using thematic analysis followed by Critical Realist Evaluation. RESULTS: Participants comprised of registered nurses (N = 4), care assistants (N = 8), bereaved relatives (N = 7), and domiciliary staff (N = 3). Although the importance of advance care planning was well recognized, the emotional labour of frequently engaging in discussions about death and dying was highlighted as a problem by some care home staff. It was evident that in some cases care home staff's unmet emotional needs led them to rushing and avoiding discussions about death and dying with residents and relatives. A sparsity of mechanisms to support care home staff's emotional needs was noted across all three care homes. Furthermore, a lack of training and knowledge appeared to inhibit care home staff's ability to engage in meaningful care planning conversations with specific groups of residents such as those living with dementia. The lack of training was principally evident amongst non-registered care home staff and those with non-formal caring roles such as housekeeping. CONCLUSION: There is a need for more focused education to support registered and non-registered care home staff to effectively engage in sensitive discussions about death and dying with residents. Furthermore, greater emotional support is necessary to help build workforce resilience and sustain change. IMPACT: Knowledge generated from this study can be used to inform the design and development of future advance care planning interventions capable of supporting the delivery of high-quality end-of-life care in care homes.

Enabling sustained communication with patients for safe and effective management of oral chemotherapy: A longitudinal ethnography.

AIMS: To examine how patients received, understood, and acted on healthcare professional communication about their oral chemotherapeutic regimen throughout their treatment. DESIGN: A longitudinal ethnographic study. METHODS: Over 60 hr of observational data were recorded, in the form of field notes and audio-recordings from interactions among nine oncology doctors, six oncology nurses, eight patients, and 11 family members over a period of 6 months in outpatient departments in one hospital in Northern Ireland. Sixteen semi-structured interviews with patients and three focus groups with healthcare professionals were also carried out. This study took place from October 2013-June 2016. Data were thematically analysed. RESULTS: Three themes where identified from the data. These were initiating concordance through first communication about oral chemotherapy; which focused on initial communication during oncology consultations about oral chemotherapy, sustained communication of managing chemotherapy side effects; which was about how communication processes supported timely and effective side effect management and un-sustained communication of oral chemotherapy medication-taking practice; when patients and healthcare professionals failed to communicate effectively about chemotherapy medication-taking. CONCLUSION: The two most important factors in ensuring the optimal management of oral chemotherapeutic medicines are early recognition and appropriate response to side effects and the maintenance of safe and effective medication administration. This study found that oncology doctors and nurses engaged in sustained communication about the side effects of chemotherapy but did not focus their communication on safe administration after the first consultation. IMPACT: Based on this evidence, we recommend that healthcare professionals who provide oral chemotherapy for home administration should review their processes and procedures. Healthcare professionals need to ensure that they embed frequent communication for the duration of treatment between themselves and patients, including open discussion and advice, about side effects and medication administration.

Using a generic definition of cachexia in patients with kidney disease receiving haemodialysis: a longitudinal (pilot) study.

BACKGROUND: Research indicates that cachexia is common among persons with chronic illnesses and is associated with increased morbidity and mortality. However, there continues to be an absence of a uniformed disease-specific definition for cachexia in chronic kidney disease (CKD) patient populations. OBJECTIVE: The primary objective was to identify cachexia in patients receiving haemodialysis (HD) using a generic definition and then follow up on these patients for 12 months. METHOD: This was a longitudinal study of adult chronic HD patients attending two hospital HD units in the UK. Multiple measures relevant to cachexia, including body mass index (BMI), muscle mass [mid-upper arm muscle circumference (MUAMC)], handgrip strength (HGS), fatigue [Functional Assessment of Chronic Illness Therapy (FACIT)], appetite [Functional Assessment of Anorexia/Cachexia Therapy (FAACT)] and biomarkers [C-reactive protein (CRP), serum albumin, haemoglobin and erythropoietin resistance index (ERI)] were recorded. Baseline analysis included group differences analysed using an independent t-test, dichotomized values using the χ2 test and prevalence were reported using the Statistical Package for the Social Sciences 24 (IBM, Armonk, NY, USA). Longitudinal analysis was conducted using repeated measures analysis. RESULTS: A total of 106 patients (30 females and 76 males) were recruited with a mean age of 67.6 years [standard deviation (SD) 13.18] and dialysis vintage of 4.92 years (SD 6.12). At baseline, 17 patients were identified as cachectic, having had reported weight loss (e.g. >5% for >6 months) or BMI <20 kg/m2 and three or more clinical characteristics of cachexia. Seventy patients were available for analysis at 12 months (11 cachectic versus 59 not cachectic). FAACT and urea reduction ratio statistically distinguished cachectic patients (P = 0.001). However, measures of weight, BMI, MUAMC, HGS, CRP, ERI and FACIT tended to worsen in cachectic patients. CONCLUSION: Globally, cachexia is a severe but frequently underrecognized problem. This is the first study to apply the defined characteristics of cachexia to a representative sample of patients receiving HD. Further, more extensive studies are required to establish a phenotype of cachexia in advanced CKD.

Systematic critical realist review of interventions designed to improve end-of-life care in care homes.

The demand for high-quality end-of-life care is rising. Frequently evidenced concerns about the provision of end-of-life in care homes relate to inter-disciplinary communication and engagement in advance care planning. A number of interventions employing different mechanisms have been designed to address these issues. Therefore, the aim of this systematic critical realist review was to describe and explain the effectiveness of interventions designed to improve end-of-life care in care homes. Electronic searches were conducted in ScienceDirect, MEDLINE, PubMed, PsychINFO, and CINAHL from January 2000 to August 2018. Forty one studies were included in the review. While most of the evidence identified in this review was not strong, there was evidence to suggest that education and inter-professional collaboration can be effective intervention mechanisms for improving end-of-life care in care homes. High staff turnover was a significant contextual mechanism impacting on the sustainability of interventions. In terms of human agency, it is important to note a consistent finding related to the dedication and enthusiasm of care home staff who deliver end-of-life care.

Estimating the Prevalence of Muscle Wasting, Weakness, and Sarcopenia in Hemodialysis Patients.

OBJECTIVES: Haemodialysis (HD) patients suffer from nutritional problems, which include muscle wasting, weakness, and cachexia, and are associated with poor clinical outcomes. The European Working Group for Sarcopenia in Older People (EWGSOP) and Foundations for the National Institute of Health (FNIH) have developed criteria for the assessment of sarcopenia, including the use of non-invasive techniques such as bioelectrical impedance assessment (BIA), anthropometry, and hand grip strength (HGS) dynamometry. This study investigated the prevalence of muscle wasting, weakness, and sarcopenia using the EWGSOP and FNIH criteria. METHODS: BIA was performed in 24 females (f) and 63 males (m) in the post-dialysis period. Total skeletal muscle mass and appendicular skeletal muscle mass were estimated and index values (i.e., muscle mass divided by height2 [kg/m2]) were calculated (Total Skeletal Muscle Index (TSMI) and Appendicular Skeletal Muscle Index (ASMI)). Mid-arm circumference and triceps skin-fold thickness were measured and mid-upper arm muscle circumference (MUAMC) calculated. HGS was measured using a standard protocol and Jamar dynamometer. Suggested cut-points for low muscle mass and grip strength were utilized using the EWGSOP and FNIH criteria with prevalence estimated, including sarcopenia. RESULTS: The prevalence varied depending on methodology: low TSMI (moderate and severe sarcopenia combined) was 55% for whole group: 21% (f) and 68% (m). Low ASMI was 32% for whole group: 25% (f) and 35% (m). Low MUAMC was 25% for whole group: 0% (f) and 30% (m). ASMI highly correlated with Body Mass Index (r = 0.78, P < .001) and MUAMC (r = 0.68, P < .001). Muscle weakness was high regardless of cut-points used (50-71% (f); 60-79% (m)). CONCLUSIONS: Internationally, this is the first study comparing measures of muscle mass (TSMM and ASMM by BIA and MUAMC) and muscle strength (HGS) using this specific methodology in a hemodialysis population. Future work is required to confirm findings.

Why nurses should be Marxists.

The argument that nurses should be Marxists is made by looking at the primary areas of nursing activity in turn, giving an example of how capitalist economic relations negatively impact upon that activity, and providing a Marxist explanation of the reasons why it has that impact. In relation to the nursing activity of health promotion, it is argued that capitalism's generation of social inequality undermines the health of the population. In relation to curative activities, the focus is on how capitalism's reckless pursuit of profit has subverted the sustainability of bactericidal interventions. The argument in relation to comforting and assistive care is that the ownership and control of health services by capitalist corporations undermines therapeutic relationships. Finally, in relation to supportive care, it is contended that capitalism's requirement for a disciplined workforce can compromise healthcare professionals' support of employees. It is concluded that if nurses aspire to have some control over their activities, then it is a good idea for them to avail of Marxism's capacity to identify the socio-economic mechanisms by which capitalism affects nursing care.

Investigating the psychological impact of active surveillance or active treatment in newly diagnosed favorable-risk prostate cancer patients: A 9-month longitudinal study.

OBJECTIVE: This study aimed to explore the psychological impact of favorable-risk prostate cancer (PCa) and associated treatment (active surveillance [AS] or active treatment [AT]), comparing prevalence and temporal variability of generalized anxiety, PCa-specific anxiety, and depression symptoms. METHODS: PCa patients were recruited at diagnosis prior to treatment decision-making and completed questionnaires assessing anxiety (State-Trait Anxiety Inventory short form [STAI-6] and Memorial Anxiety Scale for Prostate Cancer [MAX-PC]) and depression symptoms (Centre for Epidemiologic Studies Depression Scale [CES-D]) at four timepoints for 9 months. Non-cancer controls were recruited via university staff lists and community groups. Results were analyzed using analysis of variance. RESULTS: Fifty-four PCa (AS n = 11, AT n = 43) and 53 non-cancer participants were recruited. The main effect of time or treatment group were not statistically significant for CES-D scores (P > .05). The main effect of treatment on STAI-6 scores was significant (F2,73 = 4.678, .012) with AS patients reporting highest STAI-6 scores (T1 M = 36.56; T2 M = 36.89, T3 M = 38.46; T4 M = 38.89). There was a significant main effect for time since diagnosis on MAX-PC (F3,123 = 3.68, .01); AS patient scored higher than AT at all timepoints (T1 M = 10.33 vs 10.78; T2 M = 11.11 vs 11.30; T3 M = 13.44 vs 10.55; T4 M = 11.33 vs 8.88); however, both groups declined overall with time. CONCLUSIONS: Men undergoing AS had significantly higher anxiety symptoms than AT and non-cancer participants, contradicting previous literature. This may be due to perceived inactivity of AS relative to traditional narratives of cancer treatment. Participant experiences appear to be less favorable relative to other international centers. Recommendations for future research and clinical practice include the need to improve diagnosis and treatment information provision particularly for lower risk patients.

Palliative care for people with non-malignant respiratory disease and their carers: a review of the current evidence.

BACKGROUND: Internationally, non-malignant respiratory disease is on the increase. However, although palliative care is recommended as an appropriate healthcare option for this client group, evidence suggests that these patients and their carers do not receive the same standards of palliative care as patients with a malignant lung condition. AIM: The aim of this review was to provide a critical overview of the current evidence base in relation to the palliative service provision for people with non-malignant respiratory disease and their carers. METHODS: A review of the literature was conducted in July 2015 and updated in October 2017 and focused on the palliative care service provision for patients with interstitial lung disease, chronic obstructive pulmonary disease and bronchiectasis. RESULTS: In total, 71 empirical studies were included in the review and grouped into two main themes: patient and carer's bio-psychosocial symptom needs and management, and palliative care service provision for patients with non-malignant respiratory disease and their carers. CONCLUSION: The majority of palliative research focuses on patients with a diagnosis of chronic obstructive pulmonary disease. A deeper insight is required into the palliative service provision experienced by those with other forms of non-malignant respiratory disease such as bronchiectasis and interstitial lung disease.

From telling to sharing to silence: A longitudinal ethnography of professional-patient communication about oral chemotherapy for colorectal cancer.

BACKGROUND: Healthcare professionals are encouraged to promote concordance, a shared agreement about prescription and administration of medications, in their communication with patients. However, there is a paucity of research regarding the impact of communication about self-administered oral chemotherapy. The aim of this study was to examine the changing dynamics of communication through the patient journey from diagnosis of colorectal cancer to posttreatment of chemotherapy. METHODS: Over 60 hours of observational data were digitally recorded from interactions between 15 healthcare professionals, eight patients with colorectal cancer prescribed capecitabine, and 11 family members over a 6-month period in outpatient departments within one hospital in the United Kingdom. Sixteen semi-structured interviews were conducted with patients during and after their treatment. Three focus groups were carried out with healthcare professionals. These data were analysed using thematic analysis. RESULTS: The patient journey followed a path of four distinct phases: autocracy, physiological concordance, holistic concordance, and silence. Initially, communication was medicalised with patients occupying a passive role. As patients continued their journey, they took a more active role in their treatment discussion by leading consultations and sharing their priorities of care. At the end of treatment, patients felt isolated and unsupported when they were discharged from their oncology team. CONCLUSIONS: Communication about oral chemotherapy is not a static process; it evolves to take account of changing clinical requirements and growing patient confidence in dealing with their cancer. Different stages in the treatment journey indicate the need for different approaches to communication.