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Background: Globally, the demand for hospice care continues to grow resulting in substantial resource burden. Whilst some countries are able to rely on fixed government contributions, statutory funding for palliative care in the United Kingdom is unequally distributed. These unstable funding streams and increased demand means that hospices need to evidence their value. Objective: This study explored the experiences of patients and family-caregivers to determine what they valued most from accessing hospice services in Wales. Methods: In this large multi-site qualitative study, 94 semi-structured interviews and 2 focus groups were conducted with hospice patients (n = 45), family-caregivers (n = 18), hospice staff (n = 31) and volunteers (n = 10). The audio recordings were transcribed verbatim and analysed using Framework analysis. Results: Seven themes described patient and family-caregiver experiences and what they valued most: relationships with staff and volunteers, greater support networks which reduced social isolation and loneliness, provision of information and advice which improved patient autonomy, symptom management and subsequent reduction in psychological distress, improvements in patient functionality, mobility and overall physical health and respite relief which promoted improved relationships. Conclusion: This is the largest study to explore what patients and family-caregivers value from hospice care. Findings indicate that hospice care provides a truly needs-led and strengths-based service to those who are nearing and at the end-of-life, which is highly valued by patients and family members. [ABSTRACT FROM AUTHOR]

Context: Too many people living with chronic kidney disease are opting for and starting on hospital‐based dialysis compared to a home‐based kidney replacement therapy. Dialysis services are becoming financially unsustainable. Objective: This study aimed to assess the efficacy of coproductive research in chronic kidney disease service improvement to achieve greater sustainability. Design: A 2‐year coproductive service improvement study was conducted with multiple stakeholders with the specific intention of maximizing engagement with the national health kidney services, patients and public. Setting and Participants: A national health kidney service (3 health boards, 18 dialysis units), patients and families (n = 50), multidisciplinary teams including doctors, nurses, psychologists, social workers, and so forth (n = 68), kidney charities, independent dialysis service providers and wider social services were part of this study. Findings: Coproductive research identified underutilized resources (e.g., patients on home dialysis and social services) and their potential, highlighted unmet social care needs for patients and families and informed service redesign. Education packages were reimagined to support the home dialysis agenda including opportunities for wider service input. The impacts of one size fits all approaches to dialysis on specialist workforce skills were made clearer and also professional, patient and public perceptions of key sustainability policies. Discussion and Conclusions: Patient and key stakeholders mapped out new ways to link services to create more sustainable models of kidney health and social care. Maintaining principles of knowledge coproduction could help achieve financial sustainability and move towards more prudent adult chronic kidney disease services. Patient or Public Contribution: Involved in developing research questions, study design, management and conduct, interpretation of evidence and dissemination. [ABSTRACT FROM AUTHOR]

Background: Co‐production of research into public health services has yet to demonstrate tangible benefits. Few studies have reported the impact of co‐production on research outcomes. The previous studies of organ donation have identified challenges in engaging with public organizations responsible, gaining ethical approval for sensitive studies with the recently bereaved and difficulty in recruiting bereaved family members who were approached about organ donation. Objective: To address these challenges, we designed the first large co‐productive observational study to evaluate implementation of a new system of organ donation in Wales. This paper outlines the co‐productive strategies that were designed to overcome known methodological challenges and reports what impact they had on resolving these challenges. Design: Two‐year co‐produced study with multiple stakeholders with the specific intention of maximizing engagement with the National Health Service arm in Wales responsible for organ donation, and recruitment of bereaved family members whose perspectives are essential but commonly absent from studies. Setting and participants: NHS Blood and Transplant, Welsh Government and multiple patient and public representatives who served as co‐productive partners with the research team. Results: Co‐productive strategies enabled a smooth passage through four different ethics processes within the 10‐week time frame, family member recruitment targets to be surpassed, sharing of routinely collected data on 100% of potential organ donor cases and development of further research capacity and capability in a critically under researched area. Discussion and conclusion: Although expensive and time consuming, co‐production was effective and added value to research processes and study outcomes. [ABSTRACT FROM AUTHOR]

Background: Wales introduced a soft opt-out organ donation system on 1st December 2015 with the aim of improving consent rates. In the first 18 months consent rates improved but the difference could not solely be attributed to the soft opt-out system when compared with similar improvements in consent rates in other UK nations.Methods: We conducted an 18 month post-intervention qualitative process evaluation involving 88 family members of 60/211 potential organ donor cases, and 19 professionals. Views and experiences of Specialist Nurses in Organ Donation who implemented the new system and family members who were involved in decision making were collected to see how their respective behaviours impacted on implementation. Data collection included interviews, focus groups and qualitative questionnaire data.Results: Implementation was considered a success by Specialist Nurses in Organ Donation. The bespoke retraining programme and responsive approach to addressing initial implementation issues were identified as examples of best practice. Specialist Nurses in Organ Donation were valued by family members. Six implementation issues had an impact on consent rates - the media campaign had gaps, the system was more complex, challenges in changing professional behaviours, inability to obtain the required standard of evidence from family members to overturn a donation decision, increased complexity of consent processes, and additional health systems issues.Conclusion: This is the first comprehensive process evaluation of implementing a soft opt-out system of organ donation. Specific elements of good implementation practice (such as investment in the retraining programme and the responsiveness of Specialist Nurses in Organ Donation and managers to feedback) were identified. The key message is that despite retraining, nursing practice did not radically change overnight to accommodate the new soft opt-out system. Policy makers and health service managers should not assume that nurses simply need more time to implement the soft-out as intended. Additional responsive modification of processes, ongoing training and support is required to help with implementation as originally intended. Scotland, England and the Netherlands are introducing soft opt-out systems. There is an opportunity to learn from initial implementation in Wales, by acknowledging gaps, good practice and opportunities to further improve processes and nursing practices. [ABSTRACT FROM AUTHOR]

In an attempt to improve organ donation rates, some countries are considering moving from "opt‐in" systems where citizens must express their willingness to be an organ donor, to "opt‐out" systems where consent is presumed unless individuals have expressed their wishes otherwise, by, for example, joining an "opt‐out" register. In Wales—a part of the United Kingdom—the devolved government recently legislated for an "opt‐out" system. For the change to be effective, a public awareness campaign was critical to the policy's success. Using quantitative and qualitative content analysis, we explored media coverage of the change to better understand the relationship between the state, policy actors, media and the public when such policy changes take place. Our findings illustrate how a state communication campaign can effectively set the media agenda within which we saw a degree of interdependency created with the state using the media to promote policy, and the media relying on the state for credible information. Yet we also found that the media is not uncritical and observed how it uses its autonomy to influence policy setting. Over the period of study, we found that a change in tone and view towards deemed consent organ donation has taken place in the media. However, while this may influence or reflect public attitudes, it is yet to be seen whether the media campaign translates into behavioural change that will result in increases in organ donations. [ABSTRACT FROM AUTHOR]

Aim To gain a better understanding of how children aged 6-18 years who use wheelchairs and their families conceptualized physical exercise and keeping fit. Background Disabled children with reduced mobility are commonly overweight and unfit. Nurse-led health screening programmes in schools commonly exclude disabled children if they cannot use standard weighing scales or stand against height measuring sticks. Design Qualitative interview study at two time points over 6 months with children who use wheelchairs and their families. Methods Framework analysis using the theory of planned behaviour. Findings Mainly physically active participants were recruited (24 children and 23 parents) 2013-2014. Despite engaging in high levels of physical exercise, children were assessed as fit but had elevated body fat and did not realize how fit they were or that they were slightly overweight and nor did their parents. Children enjoyed the social benefits of exercise. Unlike their parents, children confused the purpose and outcomes of physical exercise with therapy (e.g. physiotherapy) and incorrectly understood the effects of physical exercise on body function and strength, preventing stiffness, increasing stamina and reducing fatigue. A new model was developed to show children's misconceptions. Conclusions Proactive parents can overcome barriers to enable their children to benefit from physical exercise. Professionals need to increase communication clarity to improve children's understanding of therapy compared with physical exercise outcomes. Inclusion of children who use wheelchairs in health education policy; routine health screening; physical education classes and teacher training requires improvement. Body composition measurement is recommended, for which nurses will need training. [ABSTRACT FROM AUTHOR]

Background: Children's palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children's hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. Methods: Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. Results: The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children's palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). Conclusions: Findings make a significant contribution to population-based needs assessment and commissioning methodology in children's palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings. [ABSTRACT FROM AUTHOR]

Background/Aim: Little is known about how individual physiotherapists assess, treat and measure outcomes for patients with patellofemoral pain syndrome (PFPS) in the clinic. Previous research has revealed no gold standard methods. This study therefore set out to explore beliefs and practices of physiotherapists working in a non-academic health community in North Wales (NW). Methods: Methodology involved a mixed-method approach. A quantitative questionnaire exploring how physiotherapists assess, treat, and measure outcomes in PFPS, was emailed to physiotherapists working in NW. Thirty responded (62.5%) and eleven were then interviewed (qualitative). Interviews were recorded, transcribed, and organised into categories. Number and frequency of the different assessments, treatments, and outcome measures were triangulated against the quantitative survey data. Findings were then synthesised. Findings: Physiotherapists are aware of the different types of presentation of PFPS; however, individual clinical practice differs. Although the questionnaire reported a large number of outcome measures, interviews reported mainly only the visual analogue pain scale and subjective functional tasks. Moreover, physiotherapists treat function, not syndromes. Home exercises aim for simplicity and function rather than complex muscle group specific exercises. Peers were reported to be the most important source of knowledge and influence on their practice. Conclusion: There is a need to develop an evidence-based assessment and outcome measurement protocol for routine clinical practice. [ABSTRACT FROM AUTHOR]

Background: In May 2020, England implemented soft 'opt-out' or 'deemed consent' for deceased donation with the intention of raising consent rates. However, this coincided with the COVID-19 pandemic, making it difficult to assess the early impact of the law change. Wales and Scotland changed their organ donation legislation to implement soft opt-out systems in 2015 and 2021 respectively. This study provides a descriptive analysis of changes in consent and transplant rates for deceased organ donation in England, Scotland and Wales., Methods: Logistic regression and descriptive trend analysis were employed to assess the probability of a patient who died in critical care becoming a donor, and to report consent rates using data, respectively, from the Intensive Care National Audit and Research Centre (ICNARC) in England from 1 April 2014 to 30 September 2021, and from the Potential Donor Audit for England, Scotland and Wales from April 2010 to June 2023., Results: The number of eligible donors in April-June 2020 were 56.5%, 59.3% and 57.6% lower in England, Scotland and Wales relative to April-June 2019 (pre-pandemic). By April-June 2023, the number of eligible donors had recovered to 87.4%, 64.2% and 110.3%, respectively, of their levels in 2019. The consent rate in England, Scotland and Wales reduced from 68.3%, 63.0% and 63.6% in April-June 2019 to 63.2%, 60.5% and 56.3% in April-June 2023., Conclusions: While the UK organ donation system shows signs of recovery from the COVID-19 pandemic, the number of eligible potential donors and consent rates remain below their pre-pandemic levels., Competing Interests: NO authors have competing interests., (Copyright: © 2024 O'Neill et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Objectives: To identify the factors that determine treatment choices following pre-dialysis education., Design: Retrospective cohort study using data linkage with univariate and multivariate analyses using linked data., Setting: Secondary care National Health Service Wales healthcare system., Participants: All people in Wales over 18 years diagnosed with established kidney disease, who received pre-dialysis education between 1 January 2016 and 12 December 2018., Main Outcome Measures: Patient choice of dialysis modality and any kidney replacement therapy started., Results: Mean age was 67 years; n=1207 (60%) were male, n=878 (53%) had ≥3 comorbidities, n=805 (66%) had mobility problems, n=700 (57%) had pain symptoms, n=641 (52%) had anxiety or were depressed, n=1052 (61.6%) lived less than 30 min from their treatment centre, n=619 (50%) were on a spectrum of frail to extremely vulnerable. n=424 (25%) chose home dialysis, n=552 (32%) chose hospital-based dialysis, n=109 (6%) chose transplantation, n=231 (14%) chose maximum conservative management and n=391 (23%) were 'undecided'. Main reasons for not choosing home dialysis were lack of motivation/low confidence in capacity to self-administer treatment, lack of home support and unsuitable housing. Patients who choose home dialysis were younger, had lower comorbidities, lower frailty and higher quality of life scores. Multivariate analysis found that age and frailty were predictors of choice, but we did not find any other demographic associations. Of patients who initially chose home dialysis, only n=150 (54%) started on home dialysis., Conclusion: There is room for improvement in current pre-dialysis treatment pathways. Many patients remain undecided about dialysis choice, and others who may have chosen home dialysis are still likely to start on unit haemodialysis., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Aim: To report a protocol for a qualitative study to better understand the key factors that influence decision making about pregnancy from women's perspectives and to use these data to develop a theoretical model for shared decision-making tools for the multiple stakeholders., Design: Mixed-method design using online surveys (with validated components) and purposively sampled follow-up semi structured interviews., Methods: Funded from September 2020 for 12 months. Online surveys of adult women (aged 18-50) identified via all Wales kidney database (n ≥ 500), additional recruitment through multidisciplinary healthcare professionals, relevant third sector organizations and social media. Follow-up in-depth qualitative interviews with n = 30 women. Linear regression models to identify associations between shared decision-making preferences and clinical and psychosocial variables. Qualitative interviews will use a visual timeline task to empower women in taking control over their narratives. Qualitative data will be fully transcribed and analysed thematically, based around a chronological and theoretical (theoretical domains framework) structure that maps out key challenges and opportunities for improved decision support in the care pathway. Visual timelines will be used during stakeholder consultation activities, to enable us to co-create a map of current support, gaps in provision, and opportunities for interventions. Quantitative data will be analysed descriptively to characterize our cohort. We will assemble a multidisciplinary shared decision-making intervention development group and provide ongoing stakeholder consultation activities with patient and public representatives., Discussion: Outcomes will support new learning into; the ways women's knowledge of kidney disease may affect family planning and pregnancy, their needs in terms of psychological and social support, and how they weigh up the pros and cons of starting a family., Impact: Evidence will inform the design of new shared decision-making tools to better support women with the complex and often emotional decisions about having children while living with kidney disease., (© 2021 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Objective: To estimate the effectiveness of standardised self-management kits for children with type 1 diabetes., Design: Pragmatic trial with randomisation ratio of two intervention: one control. Qualitative process evaluation., Setting: 11 diabetes clinics in England and Wales., Participants: Between February 2010 and August 2011, we validly randomised 308 children aged 6-18 years; 201 received the intervention., Intervention: We designed kits to empower children to achieve glycaemic control, notably by recording blood glucose and titrating insulin. The comparator was usual treatment. OUTCOME MEASURES AT 3 AND 6 MONTHS: Primary: Diabetes Pediatric Quality of Life Inventory (PedsQL). Secondary: HbA1c; General PedsQL; EQ-5D; healthcare resource use., Results: Of the five Diabetes PedsQL dimensions, Worry showed adjusted scores significantly favouring self-management kits at 3 months (mean child-reported difference =+5.87; Standard error[SE]=2.19; 95% confidence interval [CI]) from +1.57 to +10.18; p=0.008); but Treatment Adherence significantly favoured controls at 6 months (mean child-reported difference=-4.68; SE=1.74; 95%CI from -8.10 to -1.25; p=0.008). Intervention children reported significantly worse changes between 3 and 6 months on four of the five Diabetes PedsQL dimensions and on the total score (mean difference=-3.20; SE=1.33; 95% CI from -5.73 to -0.67; p=0.020). There was no evidence of change in HbA1c; only 18% of participants in each group achieved recommended levels at 6 months. No serious adverse reactions attributable to the intervention or its absence were reported.Use of kits was poor. Few children or parents associated blood glucose readings with better glycaemic control. The kits, costing £185, alienated many children and parents., Conclusions: Standardised kits showed no evidence of benefit, inhibited diabetes self-management and increased worry. Future research should study relationships between children and professionals, and seek new methods of helping children and parents to manage diabetes., Trial Registration Number: ISRCTN17551624., Competing Interests: Competing interests: Professor JWG has received payments from Pfizer, Bayer and Ipsen for lectures, development of educational presentations and travel/accommodation to attend scientific meetings and advisory board meetings. His employer (Cardiff University) has also received funding from Novo Nordisk to support the development of patient-support materials used in the Development and Evaluation of a Psychosocial Intervention for Children and Teenagers Experiencing Diabetes (DEPICTED) research study., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

Introduction: Kidney disease is common, affecting up to 1 in 10 of the adult population, and the numbers are expected to rise over the next decade. There are three main treatments that are available to patients with kidney disease: transplantation, dialysis and supportive care without dialysis. Dialysis can occur in a dialysis unit or in a person's home, but unit-based dialysis remains the most common initial treatment for patients in Wales. This is a cause for concern as most studies suggest that it is associated with the lowest quality of life and the highest mortality, and is a more expensive treatment option.This study aims to identify the factors that lead to patients choosing unit-based haemodialysis rather than home-based dialysis with a view to informing future changes in patient education and service commissioning in Wales. A secondary aim is to determine if the co-production of research leads to more sustainable services., Methods and Analysis: This mixed-method study taking place between October 2018 and September 2020 will use a sequential explanatory design whereby the descriptive quantitative cross-sectional analysis of linked health and administrative data sets inform qualitative data collection from patients, carers and health and care professionals. Qualitative findings will be used to interpret or explain quantitative descriptive results. Additional strands to the study include a review of materials and education provided to patients and an economic review of treatment modalities., Ethics and Dissemination: The study will be conducted in accordance with the principles expressed in the Declaration of Helsinki. It has full approval from Health and Care Research Wales Research Ethics Committee #5. As a co-productive study involving patients, clinicians, third sector partners and academics, findings from this study will be shared on a continual basis. Study results will be published in peer-reviewed journals and presented at national and international conferences., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: To determine the short-term impact of a soft opt-out organ donation system on consent rates and donor numbers., Design: Before and after observational study using bespoke routinely collected data., Setting: National Health Service Blood and Transplant., Participants: 205 potential organ donor cases in Wales., Interventions: The Act and implementation strategy., Primary and Secondary Outcomes: Consent rates at 18 months post implementation compared with 3 previous years, and organ donor numbers 21 months before and after implementation. Changes in organ donor register activity post implementation for 18 months., Results: The consent rate for all modes of consent was 61.0% (125/205), showing a recovery from the dip to 45.8% in 2014/2015. 22.4% (46/205) were deemed consented donors: consent rate 60.8% (28/46). Compared with the 3 years before the switch there was a significant difference in Welsh consent rates (χ 2 p value=0.009). Over the same time period, rest of the UK consent rates also significantly increased from 58.6% (5256/8969) to 63.1% (2913/4614) (χ 2 p value<0.0001), therefore the Wales increase cannot be attributed to the Welsh legislation change. Deceased donors did not increase: 101 compared with 104. Organ donation registration increased from 34% to 38% with 6% registering to opt-out., Conclusion: This is the first rigorous initial evaluation with bespoke data collected on all cases. The longer-term impact on consent rates and donor numbers is unclear. Concerns about a potential backlash and mass opting out were not realised. The move to a soft opt-out system has not resulted in a step change in organ donation behaviour, but can be seen as the first step of a longer journey. Policymakers should not assume that soft opt-out systems by themselves simply need more time to have a meaningful effect. Ongoing interventions to further enhance implementation and the public's understanding of organ donation are needed to reach the 2020 target of 80% consent rates. Further longitudinal monitoring is required., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Health policymakers in many countries are looking at ways of increasing health care coverage by scaling up the deployment of community health workers. In this commentary, we describe the rationale for the UK to learn from Brazil's scaled-up Community Health Worker primary care strategy, starting with a pilot project in North Wales.