Personalised Exercise-Rehabilitation FOR people with Multiple long-term conditions (PERFORM): protocol for a randomised feasibility trial.

INTRODUCTION: Personalised Exercise-Rehabilitation FOR people with Multiple long-term conditions (PERFORM) is a research programme that seeks to develop and evaluate a comprehensive exercise-based rehabilitation intervention designed for people with multimorbidity, the presence of multiple long-term conditions (MLTCs). This paper describes the protocol for a randomised trial to assess the feasibility and acceptability of the PERFORM intervention, study design and processes. METHODS AND ANALYSIS: A multicentre, parallel two-group randomised trial with individual 2:1 allocation to the PERFORM exercise-based intervention plus usual care (intervention) or usual care alone (control). The primary outcome of this feasibility trial will be to assess whether prespecified progression criteria (recruitment, retention, intervention adherence) are met to progress to the full randomised trial. The trial will be conducted across three UK sites and 60 people with MLTCs, defined as two or more LTCs, with at least one having evidence of the beneficial effect of exercise. The PERFORM intervention comprises an 8-week (twice a week for 6 weeks and once a week for 2 weeks) supervised rehabilitation programme of personalised exercise training and self-management education delivered by trained healthcare professionals followed by two maintenance sessions. Trial participants will be recruited over a 4.5-month period, and outcomes assessed at baseline (prerandomisation) and 3 months postrandomisation and include health-related quality of life, psychological well-being, symptom burden, frailty, exercise capacity, physical activity, sleep, cognition and serious adverse events. A mixed-methods process evaluation will assess acceptability, feasibility and fidelity of intervention delivery and feasibility of trial processes. An economic evaluation will assess the feasibility of data collection and estimate the costs of the PERFORM intervention. ETHICS AND DISSEMINATION: The trial has been given favourable opinion by the West Midlands, Edgbaston Research Ethics Service (Ref: 23/WM/0057). Participants will be asked to give full, written consent to take part by trained researchers. Findings will be disseminated via journals, presentations and targeted communications to clinicians, commissioners, service users and patients and the public. TRIAL REGISTRATION NUMBER: ISRCTN68786622. PROTOCOL VERSION: 2.0 (16 May 2023).

The identification and management of depression in UK Kidney Care: Results from the Mood Maps Study.

BACKGROUND: Depression is common in people with chronic kidney disease, yet little is known about how depression is identified and managed as part of routine kidney care. OBJECTIVES: The primary objective was to survey all UK adult kidney centres to understand how depression is identified and managed. A secondary objective was to broadly describe the variability in psychosocial care. DESIGN: Online survey. METHODS: The survey comprised of three sections: (1) general kidney care, (2) psychological provision and (3) social work provision. RESULTS: 48/68 (71%) of centres responded to the general survey with 20 and 13 responses from psychological and social work module respectively. Only 31.4% reported having both in centre psychological and social work practitioners. Three centres reported no access to psychosocial provision. Of the 25 centres who reported on pathways, 36.0% reported having internal pathways for the identification and management of depression. Within services with psychological provision, screening for depression varied across modality/group (e.g., 7.1% in mild/moderate chronic kidney disease vs. 62.5% in kidney donors). Cognitive Behavioural Therapy and Acceptance and Commitment Therapy were the most common interventions offered. Most psychosocial services were aware of the National Institute for Health and Care Excellence guidelines for managing depression in long-term conditions (n = 18, 94.7%) yet few fully utilised (n = 6, 33.3%). Limited workforce capacity was evident. CONCLUSIONS: There is considerable variability in approaches taken to identify and treat depression across UK kidney services, with few services having specific pathways designed to detect and manage depression. Workforce capacity remains a significant issue.

Approaches to the identification and management of depression in people living with chronic kidney disease: A scoping review of 860 papers.

BACKGROUND: Depression is prevalent across the spectrum of Chronic Kidney Disease and associated with poorer outcomes. There is limited evidence regarding the most effective interventions and care pathways for depression in Chronic Kidney Disease. OBJECTIVES: To investigate how depression is identified and managed in adults with Chronic Kidney Disease. DESIGN: Scoping review. METHODS: Systematic search of eight databases with pre-defined inclusion criteria. Data relevant to the identification and/or management of depression in adults with Chronic Kidney Disease were extracted. RESULTS: Of 2147 articles identified, 860 were included. Depression was most identified using self-report screening tools (n = 716 studies, 85.3%), with versions of the Beck Depression Inventory (n = 283, 33.7%) being the most common. A total of 123 studies included data on the management of depression, with nonpharmacological interventions being more frequently studied (n = 55, 45%). Cognitive Behavioural Therapy (n = 15) was the most common nonpharmacological intervention, which was found to have a significant effect on depressive symptoms compared to controls (n = 10). However, how such approaches could be implemented as part of routine care was not clear. There was limited evidence for antidepressants use in people with Chronic Kidney Disease albeit in a limited number of studies. CONCLUSIONS: Depression is commonly identified using validated screening tools albeit differences exist in reporting practices. Evidence regarding the management of depression is mixed and requires better-quality trials of both pharmacological and nonpharmacological approaches. Understanding which clinical care pathways are used and their evidence, may help facilitate the development of kidney care specific guidelines for the identification and management of depression.

Impact of COVID-19 on patient experience of kidney care: a rapid review.

INTRODUCTION: In March 2020, a pandemic state was declared due to SARS-COV-2 (COVID-19). Patients with kidney disease, especially those on replacement therapies, proved more susceptible to severe infection. This rapid literature review aims to help understand how the pandemic impacted patient experience of kidney care. METHODS: It was conducted in accordance with Cochrane Rapid Review interim guidance. Search terms, 'coronavirus', 'kidney care', and 'patient-reported experience' and terms with similar semantic meaning, identified 1,117 articles in Medline, Scopus, and Worldwide Science. Seventeen were included in the narrative synthesis. RESULTS: The findings were summarised into three themes: remote consultation and telemedicine (n = 9); psychosocial impact (n = 2); and patient satisfaction and patient-reported experience (n = 6). Patients were mostly satisfied with remote consultations, describing them as convenient and allowing avoidance of hospital visits. Anxieties included missing potentially important clinical findings due to lack of physical examination, poor digital literacy, and technical difficulties. Psychosocial impact differed between treatment modalities-transplant recipients expressing feelings of instability and dread of having to return to dialysis, and generally, were less satisfied, citing reduced ability to work and difficulty accessing medications. Those on home dialysis treatments tended to feel safer. Findings focused on aspects of patient experience of kidney care during the pandemic rather than a holistic view. CONCLUSIONS: There was little direct evaluation of modality differences and limited consideration of health inequalities in care experiences. A fuller understanding of these issues would guide policy agendas to support patient experience during future public health crises.

Impact of the COVID-19 pandemic on services for patients with chronic kidney disease: findings of a national survey of UK kidney centres.

BACKGROUND: Services for patients with kidney disease underwent radical adaptations in response to the COVID-19 pandemic. We undertook an online national survey of UK kidney centres to understand the nature, range, and degree of variation in these changes and to explore factors contributing to differing practice. METHODS: The survey was designed by a multidisciplinary team of kidney professionals, service users and researchers. It enquired about centre services and staffing, including psychosocial provision, and changes to these in response to the COVID-19 pandemic. Links to the survey were sent to all 68 UK kidney centres and remained active from December 2021 to April 2022, and a revised version to nurses in late 2022 for additional data. Quantitative data were analysed descriptively. Content analysis on free-text responses identified common themes. RESULTS: Analysable responses were received from 41 out of the 68 UK centres (60%), with partial data from an additional 7 (11%). Adaptations were system-wide and affected all aspects of service provision. Some changes were almost universal such as virtual consultations for outpatient appointments, with significant variation in others. Outpatient activity varied from fully maintained to suspended. Many centres reduced peritoneal dialysis access provision but in some this was increased. Centres considered that changes to transplant surgical services and for patients with advanced CKD approaching end-stage kidney disease had the greatest impact on patients. Few centres implemented adjustments aimed at vulnerable and underrepresented groups, including the frail elderly, people with language and communication needs, and those with mental health needs. Communication issues were attributed to rapid evolution of the pandemic, changing planning guidance and lack of resources. Staffing shortages, involving all staff groups particularly nurses, mainly due to COVID-19 infection and redeployment, were compounded by deficiencies in staffing establishments and high vacancy levels. Centres cited three main lessons influencing future service delivery, the need for service redesign, improvements in communication, and better support for staff. CONCLUSION: Kidney centre responses to the pandemic involved adaptations across the whole service. Though some changes were almost universal, there was wide variation in other areas. Exploring the role of centre characteristics may help planning for potential future severe service disruptions.

Achieving consensus on psychosocial and physical rehabilitation management for people living with kidney disease.

Background: People living with chronic kidney disease (CKD) need to be able to live well with their condition. The provision of psychosocial interventions (psychological, psychiatric and social care) and physical rehabilitation management is variable across England, as well as the rest of the UK. There is a need for clear recommendations for standards of psychosocial and physical rehabilitation care for people living with CKD, and guidance for the commissioning and measurement of these services. The National Health Service (NHS) England Renal Services Transformation Programme (RSTP) supported a programme of work and modified Delphi process to address the management of psychosocial and physical rehabilitation care as part of a larger body of work to formulate a comprehensive commissioning toolkit for renal care services across England. We sought to achieve expert consensus regarding the psychosocial and physical rehabilitation management of people living with CKD in England and the rest of the UK. Methods: A Delphi consensus method was used to gather and refine expert opinions of senior members of the kidney multi-disciplinary team (MDT) and other key stakeholders in the UK. An agreement was sought on 16 statements reflecting aspects of psychosocial and physical rehabilitation management for people living with CKD. Results: Twenty-six expert practitioners and other key stakeholders, including lived experience representatives, participated in the process. The consensus (>80% affirmative votes) amongst the respondents for all 16 statements was high. Nine recommendation statements were discussed and refined further to be included in the final iteration of the 'Systems' section of the NHS England RSTP commissioning toolkit. These priority recommendations reflect pragmatic solutions that can be implemented in renal care and include recommendations for a holistic wellbeing assessment for all people living with CKD who are approaching dialysis, or who are at listing for kidney transplantation, which includes the use of validated measurement tools to assess the need for further intervention in psychosocial and physical rehabilitation management. It is recommended that the scores from these measurement tools be included in the NHS England Renal Data Dashboard. There was also a recommendation for referral as appropriate to NHS Talking Therapies, psychology, counselling or psychotherapy, social work or liaison psychiatry for those with identified psychosocial needs. The use of digital resources was recommended to be used in addition to face-to-face care to provide physical rehabilitation, and all healthcare professionals should be educated to recognize psychosocial and physical rehabilitation needs and refer/sign-post people with CKD to appropriate services. Conclusion: There was high consensus amongst senior members of the kidney MDT and other key stakeholders, including those with lived experience, in the UK on all aspects of the psychosocial and physical rehabilitation management of people living with CKD. The results of this process will be used by NHS England to inform the 'Systems' section of the commissioning toolkit and data dashboard and to inform the National Standards of Care for people living with CKD.

Examining the Role of the Health Belief Model Framework in Achieving Diversity and Equity in Organ Donation Among South Asians in the United Kingdom.

Organ donation continues to be low among ethnic minorities in the United Kingdom (UK), especially within the South Asian community, with a disproportionate number of patients of South Asian ethnicity awaiting organ transplants. In 2020/21, Minority Ethnic (ME) patients comprised almost a third of the national transplant waiting list, highlighting the continued imbalance between the need for transplants in South Asian communities and the availability of suitable organs. Median waiting times for transplants show that, generally, white patients wait less time than ME patients; Only 39.5% of ME families consented to proceed with deceased organ donation when approached compared to 69% of white families. How to increase awareness among the South Asian community on the scarcity of organ donors continues to be a growing challenge facing the healthcare system in the UK and globally. This article reflects on the education strategy implemented using the Health Belief Model. It provides a detailed framework with which to consider the rationale that led to a specific behaviour, in this case organ donation among the three major ethnicities (i.e., Indian, Pakistani, Bangladeshi) within the South Asian community as part of a single study.

Bio-impedance spectroscopy added to a fluid management protocol does not improve preservation of residual kidney function in incident hemodialysis patients in a randomized controlled trial.

Avoiding excessive dialysis-associated volume depletion may help preserve residual kidney function (RKF). To establish whether knowledge of the estimated normally hydrated weight from bioimpedance measurements (BI-NHW) when setting the post-hemodialysis target weight (TW) might mitigate rate of loss of RKF, we undertook an open label, randomized controlled trial in incident patients receiving HD, with clinicians and patients blinded to bioimpedance readings in controls. A total of 439 patients with over 500 ml urine/day or residual GFR exceeding 3 ml/min/1.73m2 were recruited from 34 United Kingdom centers and randomized 1:1, stratified by center. Fluid assessments were made for up to 24 months using a standardized proforma in both groups, supplemented by availability of BI-NHW in the intervention group. Primary outcome was time to anuria, analyzed using competing-risk survival models adjusted for baseline characteristics, by intention to treat. Secondary outcomes included rate of RKF decline (mean urea and creatinine clearance), blood pressure and patient-reported outcomes. There were no group differences in cause-specific hazard rates of anuria (0.751; 95% confidence interval (0.459, 1.229)) or sub-distribution hazard rates (0.742 (0.453, 1.215)). RKF decline was markedly slower than anticipated, pooled linear rates in year 1: -0.178 (-0.196, -0.159)), year 2: -0.061 (-0.086, -0.036)) ml/min/1.73m2/month. Blood pressure and patient-reported outcomes did not differ by group. The mean difference agreement between TW and BI-NHW was similar for both groups, Bioimpedance: -0.04 kg; Control: -0.25 kg. Thus, use of a standardized clinical protocol for fluid assessment when setting TW is associated with excellent preservation of RKF. Hence, bioimpedance measurements are not necessary to achieve this.

Outcomes and care priorities for older people living with frailty and advanced chronic kidney disease: a multi-professional scoping review.

The growing older population with advanced chronic kidney disease (ACKD stages 4-5) poses a challenge for healthcare worldwide. The high prevalence of frailty and associated adverse health outcomes highlights concerns for management and interventions specific to this population. The aim was to objectively review the evidence relating to older people (≥65 years) living with frailty and ACKD. More specifically how frailty is identified, what interventions have been studied and what outcomes have been reported including outcomes important to patients, families and carers. A scoping review was undertaken following the PRISMA-Scr guidelines. Nine databases were searched and a review team of five people followed a process using defined inclusion and exclusion criteria. Data were then analysed to answer the specific questions of the review. The World Health Organization's International Classification of Functioning Disability and Health was used to map outcomes across the domains. A total of 90 studies were included. The most reported frailty measure was the frailty phenotype. The most reported outcomes were mortality, hospitalisation and healthcare utilisation. Health-related quality of life was the most common patient-reported outcome measure. There were few intervention studies and limited evidence of patient and carer perspectives. This scoping review highlights important areas for further research in older people living with frailty and ACKD. This includes a 'gold standard' measure for identifying frailty, interventions and improvements in outcome measures that matter to patients (including studies that focus on carers and carer burden) and priority setting for future research.

Exploring the role of the UK renal social worker: The nexus between health and social care for renal patients.

INTRODUCTION: Patients living with progressive chronic kidney disease may face a variety of ongoing physical, emotional, financial and/or social challenges along the disease pathway. In most UK renal units, psychosocial support has traditionally been provided by a renal social worker. However, in recent years, the numbers of renal social workers have been declining. The specialised role is poorly understood and there is no UK research about the profession. To inform future research and guide workforce planning, this study presents the first-ever exploration of the UK renal social worker role. It aimed to map the profession's activities and reasons for involvement in patient care, as well as providing an initial evaluation of that involvement on patient wellbeing. METHODS AND ANALYSIS: This mixed-method study recruited adult renal social workers (n = 14), who completed diaries over a 4-month period, participated in a focus group, and provided secondary data (caseload data and audit files where available) to give insight into their role. The evaluation of social work involvement on patient wellbeing used a pre-post intervention design. It measured distress, anxiety and depression levels as captured by the Distress Thermometer and Emotional Thermometers. A total of 161 patients completed the pre-involvement questionnaire, and 87 (55%) returned the post-involvement questionnaire. RESULTS AND CONCLUSION: The renal social worker role is creative, broad and fluid, with variations in roles linked to differences in employment and funding arrangements, configurations of the wider multidisciplinary renal team, level of standardisation of psychosocial care, availability of community services, and staff-to-patient ratios. Renal social work is different from statutory social work, and renal social workers are generally able to offer continuous rather than episodic care and support patients that would not meet strict local authority eligibility criteria. The findings showed that this support leads to significantly reduced distress and anxiety.

Cultural influences on physical activity and exercise beliefs in patients with chronic kidney disease: 'The Culture-CKD Study'-a qualitative study.

OBJECTIVES: This study used a mixed-method approach to explore cultural and ethnic influences on the perception of, and decision to engage with or not to engage with, physical activity and exercise therapy in patients with chronic kidney disease (CKD). DESIGN: Qualitative research was conducted through the use of semistructured interviews and focus groups. Self-reported physical activity levels were measured using the General Practice Physical Activity Questionnaire (GPPAQ), and self-efficacy for exercise with Bandura's Self-Efficacy for Exercise Scale. SETTING: This study was conducted in a non-clinical setting of a single National Health Service Hospital Trust between April 2018 and July 2019. PARTICIPANTS: Participants >18 years of age with a diagnosis of CKD, from black African, black Caribbean, South Asian or white ethnicity were eligible for the study. 84 patients with a diagnosis of CKD (stages 2-5), aged 25-79 (mean age 57) were recruited. Semistructured interviews (n=20) and six single-sex, ethnic-specific focus group discussions were undertaken (n=36). OUTCOMES: Primary outcome was to explore the perceptions, attitudes and values about exercise and physical activity in different ethnic groups through qualitative interviews, analysed using an inductive thematic analysis approach. Questionnaires were analysed using Pearson correlation to determine if there was a significant relationship between the self-efficacy and GPPAQ levels. RESULTS: Qualitative analysis provided four primary themes: I am who I am, Change of identity, Influences to physical activity and exercise and Support and education. Quantitative analysis using Pearson correlation revealed a significant correlation between GPPAQ levels of activity and self-efficacy to regulate exercise behaviour (r=-0.40, p=0.001). CONCLUSION: Understanding the cultural, attitudes and beliefs of individuals with CKD from a variety of ethnic backgrounds is complex. Understanding of patients' experiences, thoughts and beliefs may be of relevance to clinicians when designing CKD exercise services. TRIAL REGISTRATION NUMBER: NCT03709212; Pre-results.

Examining the influence of health on employment and work ability of Saudi haemodialysis patients: A mixed-methods study.

AIMS: To explore the employment, work productivity, activity impairment, and sustainability of work of Saudi patients with chronic kidney disease (CKD) on haemodialysis (HD). BACKGROUND: Failure to address CKD-related challenges may cause HD patients to lose their job, create a lack of compassion from co-workers and receive discrimination hindering progress in their profession. DESIGN: This is a cross-sectional explanatory sequential mixed-methods study. METHODS: A convenience sample of 130 CKD patients was surveyed in the quantitative phase using the 'Short-Form Health Survey' and 'Work Productivity and Activity Impairment Questionnaire.' For the qualitative phase, face-to-face, semi-structured interviews took place with 16 CKD patients. Data were collected in 2017. RESULTS: The respondents reported poor physical and mental health. Both employed and unemployed respondents reported moderate levels of work productivity. Better physical health was related to an increased likelihood of being employed. Physical health was negatively correlated with presenteeism, whereas mental health was negatively associated with activity impairment. Five key themes emerged from the qualitative data: work retention, sustaining employment, suitability of work, losing the work and unemployment. CONCLUSIONS: Physical condition, personal distinctiveness, cultural and traditional aspects, and employment policies and approaches affect the employment status of CKD patients on HD.

Identifying Information Needs of Patients With IgA Nephropathy Using an Innovative Social Media-stepped Analytical Approach.

INTRODUCTION: The number of people with kidney disease using social media to search for medical information and peer support is increasing. IgA nephropathy (IgAN) predominantly affects young adults, demographically the biggest users of social media. This article presents an innovative analysis of social media interactions to identify unmet education and information needs of patients with IgAN. METHODS: Following ethical approval for the study, the IgAN Support UK Facebook group (https://www.facebook.com/groups/915274415226674) granted us permission to anonymously collect and analyze 1959 posts and comments from 498 group users. An initial patient focus group and quantitative word-frequency analysis created an initial categorization matrix that was iteratively refined after serial analyses of the social media database to generate a final categorization matrix of needs. We evaluated narrative data relating to each identified category to define patient narratives relating to each area. RESULTS: A large number of information gaps and unanswered questions were identified relating to the following: diet, symptoms, diagnosis, treatment, and patient comorbidities. Patient-clinician communication and the presentation of information were also drawn out as cross-cutting issues. These themes differed significantly from those identified from the traditional patient focus group, highlighting the value of this novel method for interrogating social media data to understand unmet patient needs. CONCLUSION: Social media data are untapped and valuable resources that can be used to better understand patient information gaps, leading to the generation of targeted materials to address unmet educational needs. This innovative approach could be replicated across other health conditions.

Outcomes and care priorities for older people living with frailty and advanced chronic kidney disease: a multiprofessional scoping review protocol.

INTRODUCTION: Reported outcomes for older people with advanced chronic kidney disease (CKD) often focus on survival and mortality and little attention is paid to symptom burden and health-related quality of life. Recognising frailty and providing interventions that may improve outcomes have been studied in the general population with a growing research interest within CKD. METHODS AND ANALYSIS: A scoping review will be undertaken following a recommended process to understand relevant research and priorities for older people living with frailty and advanced CKD. Databases will be searched and following a systematic process by a core team, a final list of included studies will be analysed. Focus groups will then be conducted with older people with advanced CKD to incorporate stakeholder views. ETHICS AND DISSEMINATION: Our scoping review will use robust methodology to identify relevant literature focused on outcomes and care priorities for older people with advanced CKD. Ethical approval will be sought to conduct the focus groups. The result of this review will be disseminated through patient networks and national conferences. The interdisciplinary team collaborating plan to continue work in this area to improve the care and management of older people with advanced CKD.

Examining patient distress and unmet need for support across UK renal units with varying models of psychosocial care delivery: a cross-sectional survey study.

OBJECTIVE: To examine in-centre haemodialysis patients' emotional distress and need for support across UK renal units with varying models of psychosocial service provision. DESIGN: The study used a cross-sectional survey design. Logistic regression analysis was used to examine patient distress, as captured by the Distress Thermometer, and need for support, across different renal units. SETTING: Seven renal units across England, Wales and Scotland. The units were purposively selected so that varying workforce models of renal psychosocial services were represented. PARTICIPANTS: In total, 752 patients were on dialysis in the participating centres on the days of data collection. All adult patients, who could understand English, and with capacity (as determined by the nurse in charge), were eligible to participate in the study. The questionnaire was completed by 509 patients, resulting in an overall response rate of 67.7%. OUTCOME MEASURES: The prevalence of distress and patient-reported need for support. RESULTS: The results showed that 48.9% (95% CI 44.5 to 53.4) of respondents experienced distress. A significant association between distress and models of renal psychosocial service provision was found (χ2(6)=15.05, p=0.019). Multivariable logistic regression showed that patients in units with higher total psychosocial staffing ratios (OR 0.65 (95% CI 0.47 to 0.89); p=0.008) and specifically higher social work ratios (OR 0.49 (95% CI 0.33 to 0.74); p=0.001) were less likely to experience distress, even after controlling for demographic variables. In addition, a higher patient-reported unmet need for support was found in units where psychosocial staffing numbers are low or non-existent (χ2(6)=37.80, p<0.001). CONCLUSIONS: The novel findings emphasise a need for increased incorporation of dedicated renal psychosocial staff into the renal care pathway. Importantly, these members of staff should be able to offer support for psychological as well as practical and social care-related issues.

Midwife-moderated social media groups as a validated information source for women during pregnancy.

BACKGROUND: Widespread use of the internet has fundamentally altered the way people access health information and communicate with health providers. Pregnant women are a group who are particularly highly motivated to seek out information online. However, where mothers actually obtain their information, who they trust to supply it, and whether or not it actually fulfils their needs is often unclear. This paper examines the experiences of women accessing advice and information on pregnancy and childbirth through a dedicated social-media platform, mediated by qualified midwives. The study formed part of a larger research project that focussed on professionally moderated online learning in maternity care, and the role of online communities. This paper reports on aspects of midwife mediated information provision in the context of these online communities. METHODS: Two secret (i.e. private / invitation only) Facebook groups were created. Both groups were moderated by 2 qualified midwives. One group had 17 mothers and the other 14 mothers. Both groups ran for 35 weeks. DATA AND ANALYSIS: The data included the written and spoken words of group participants and midwife-moderators in i) face-to-face (n = 4) and online (n = 4) post-intervention focus groups; ii) one-to-one interviews with group participants and midwife moderators (n = 24); iii) the complete corpus of text-based interaction across both groups; iv) a sub-set of private message sessions (n = 24) between individual participants and midwife-moderators. Thematic analysis was applied to the combined dataset. FINDINGS: Participants found engagement with midwives and other pregnant women via a social media group convenient and accessible. The groups provided a safe space for the sharing and validation of maternity relevant information. Members trusted their midwife-moderators to ensure information was reliable. For many members, the group became the primary source of pregnancy related information. CONCLUSION: Midwife-mediated social media groups offer a highly effective way of providing individualised information provision and social support for pregnant woman. Access to a group can also significantly impact on perceptions of relational continuity.

A Co-Designed Social Media Intervention to Satisfy Information Needs and Improve Outcomes of Patients With Chronic Kidney Disease: Longitudinal Study.

BACKGROUND: The number of people living with a long-term condition is increasing worldwide. Social media offers opportunities for patients to exchange information and experiences with others with the same condition, potentially leading to better self-management and improved patient outcomes, at minimal costs to health service providers. OBJECTIVE: This paper describes how an online network with a range of social media platforms was created, with the help of a group of patients with chronic kidney disease and specialist professionals. The project considered whether information needs and health-related and social outcomes were met. METHODS: We performed a longitudinal in-depth evaluation of the creation of the moderated network, observation of the use of the platforms, self-efficacy surveys (at baseline and 6 months), and semistructured interviews (at baseline and 6 months). RESULTS: A total of 15 patients and professionals participated in the co-design of the network (hub), which was initially launched with 50 patients. Several platforms were needed to engage patients at different levels and encourage generation of information, with the support of moderators. In addition, 14 separate patients participated in the evaluation. Satisfaction of information needs through social engagement improved self-efficacy (n=13) with better self-care and management of illness. Social outcomes included seeking employment and an increase in social capital. CONCLUSIONS: An online network (hub) with several social media platforms helped patients with chronic kidney disease manage their condition. Careful co-designing with users resulted in a sustainable network with wider applicability across health and social care.

An Evidence-based Approach to Measuring Affective Domain Development.

BACKGROUND: Educational taxonomies are utilised within nursing programmes to design curriculum, develop learning objectives, and measure attainments including the assessment of values, behaviours, and attitudes. Current measurement of the affective domain is limited, relying on quantitative tools, often immediately before and after learning activities. PURPOSE: This paper examines the reliability of a qualitative framework to assess the long-term impact of learning activities known to stimulate affective domain development. METHOD: Epstein's (1977) qualitative framework was applied to the self-reported responses of twelve international nurses (20-24 months post nurse registration) who had engaged in learning activities during their pre-registration programme that were considered to be enrichment (international placement, interprofessional learning, simulation and blended learning). RESULTS: Epstein's framework was used to measure the degree of affective domain development from the self-reported responses of the students. The degree of modification in affective domain development was assessed as dentification level (assuming a different attitude or behaviour) for four nurses and internalisation stage for eight nurses (embracing new values and attitudes). CONCLUSION: Epstein's framework is a reliable tool that can capture the short and long-term modification in affective domain development of nurses after they have experienced transformational learning activities. Key elements that move a nurse from identification to internalisation level are the motivating reason for undertaking the activity and reflection on the learning.

Maintaining Harmony: How Religion and Culture are Interwoven in Managing Daily Diabetes Self-Care.

The lingering culture among Javanese people cannot be separated from religion, influencing how they perceive any factors that might play a role in managing any health condition. This present study aimed in exploring the perceptions and experiences of religion and culture in performing daily self-care among Javanese Muslim with type 2 diabetes. A qualitative study with thematic content analysis method utilizing in-depth semi-structured interviews was undertaken to explore the perceptions and experiences of Javanese Muslim with diabetes managing their daily self-care activity. Convenient samples of 24 participants were selected to gain a richer understanding of self-care activity. The study identified one main theme of 'maintaining harmony' with comprised of two sub-themes: 'surrender and accept', and 'keep trying and leave the rest to Allah, a concept of tawakkal'. The first sub-theme consists of categories of: nerimo ing pandum, or accepting with sincerity, and tepo seliro, or being tolerance with others. The second sub-theme consists of three categories: being independent, social ties, and embracing Allah. The study also reveals the importance of Pengajian and Persadia as social resources in enhancing the capability to better self-care the condition. Thus, it also reveals the need to further develop diabetes education programmes in collaboration with religious leaders and health professionals to promote self-care to complement religious practice: Tawakkal or 'Keep trying and leave the rest to Allah'.

Mapping the UK renal psychosocial workforce: the first comprehensive workforce survey.

BACKGROUND: Emerging evidence of psychosocial problems in CKD patients has led to an acceptance that a focus on the emotional wellbeing of the patient should be included in the provision of comprehensive CKD care. It is unclear if an increased attention for psychosocial needs in guidelines and policy documents has led to a rise in psychosocial staffing levels or change in composition of staff since the last workforce mapping in 2002. This paper offers a critical analysis and in-depth discussion of findings and their implications, in addition to providing an international perspective and exposing gaps in current knowledge. METHODS: Data on psychosocial staffing levels was taken from a survey based on the Scottish Renal Association's (SRA) staffing survey that was sent to all units in England, Wales and Northern-Ireland in 2016. In addition, data from a psychosocial staffing survey designed by and distributed via psychosocial professional groups was used. This data was then completed with Freedom of Information (FOI) requests and collated to describe the current renal psychosocial workforce in all 84 UK renal units. This was compared to results from the last renal workforce mapping in 2002. RESULTS: The results from this mapping show great variability in models of service provision, significant exceeding of benchmarks for staffing levels, and a change in staffing patterns over the past 15 years. Adult psychology services have increased in number, but provision remains low due to increased patient numbers, whereas adult social work and paediatric services have decreased. CONCLUSION: A lack in the provision of renal psychosocial services has been identified, together with the absence of a general service provision model. These findings provide a valuable benchmark for units, a context from which to review and monitor provision alongside patient need. Along with recommendations, this paper forms a foundation for future research and workforce planning. Research into best practice models of service provision and the psychosocial needs of CKD patients lies at the heart of the answers to many identified questions.