Integrating Palliative Care and Heart Failure: the PalliatHeartSynthesis realist synthesis.

Background: Cardiovascular disease is the most common cause of death worldwide, highlighting the need for studies to determine options for palliative care within the management of patients with heart failure. Although there are promising examples of integrated palliative care and heart failure interventions, there is heterogeneity in terms of countries, healthcare settings, multidisciplinary team delivery, modes of delivery and intervention components. Hence, this review is vital to identify what works, for whom and in what circumstances when integrating palliative care and heart failure. Objectives: To (1) develop a programme theory of why, for whom and in what contexts desired outcomes occur; and (2) use the programme theory to co-produce with stakeholders key implications to inform best practice and future research. Design: A realist review of the literature underpinned by the Realist and Meta-narrative Evidence Syntheses: Evolving Standards quality and reporting standards. Data sources: Searches of bibliographic databases were conducted in November 2021 using the following databases: EMBASE, MEDLINE, PsycInfo, AMED, HMIC and CINAHL. Further relevant documents were identified via alerts and the stakeholder group. Review methods: Realist review is a theory-orientated and explanatory approach to the synthesis of evidence. A realist synthesis was used to synthesise the evidence as successful implementation of integrated palliative care and heart failure depends on the context and people involved. The realist synthesis followed Pawson's five iterative stages: (1) locating existing theories; (2) searching for evidence; (3) document selection; (4) extracting and organising data; and (5) synthesising the evidence and drawing conclusions. We recruited an international stakeholder group (n = 32), including National Health Service management, healthcare professionals involved in the delivery of palliative care and heart failure, policy and community groups, plus members of the public and patients, to advise and give us feedback throughout the project, along with Health Education England to disseminate findings. Results: In total, 1768 documents were identified, of which 1076 met the inclusion criteria. This was narrowed down to 130 included documents based on the programme theory and discussions with stakeholders. Our realist analysis developed and refined 6 overarching context-mechanism-outcome configurations and 30 sub context-mechanism-outcome configurations. The realist synthesis of the literature and stakeholder feedback helped uncover key intervention strategies most likely to support integration of palliative care into heart failure management. These included protected time for evidence-based palliative care education and choice of educational setting (e.g. online, face to face or hybrid), and the importance of increased awareness of the benefits of palliative care as key intervention strategies, the emotive and intellectual need for integrating palliative care and heart failure via credible champions, seeing direct patient benefit, and prioritising palliative care and heart failure guidelines in practice. The implications of our findings are further outlined in the capability, opportunity, motivation, behaviour model. Limitations: The realist approach to analysis means that findings are based on our interpretation of the data. Future work: Future work should use the implications to initiate and optimise palliative care in heart failure management. Conclusion: Ongoing refinement of the programme theory at each stakeholder meeting allowed us to co-produce implications. These implications outline the required steps to ensure the core components and determinants of behaviour are in place so that all key players have the capacity, opportunity and motivation to integrate palliative care into heart failure management. Study registration: This study is registered as PROSPERO CRD42021240185. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR131800) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 34. See the NIHR Funding and Awards website for further award information.

People with heart failure can frequently become unwell with poor quality of life despite advanced medical therapies. Palliative care can do much to alleviate suffering for people with heart failure as it focuses on adding to patient care by treating the whole person ­ their physical, psychosocial and spiritual needs, which improves quality of life for both the patient and their loved ones. However, poor integration of palliative care into the management of heart failure is an ongoing problem. To understand why this is, we have undertaken a particular method of literature review called realist synthesis that looks at all types of literature to identify what works, for whom and in what circumstances. We have worked closely with our stakeholder group (including healthcare providers and patients who have heart failure and their carers) to advise and give us feedback throughout this review. We found the following: A review of education for health and social care professionals is needed to make sure that palliative care for patients with non-cancer conditions such as heart failure is adequately covered. Education is also needed for patients and those who care for them to help them understand what palliative care is (holistic care delivered alongside active heart failure management based on patient need) and what it is not (only for cancer patients and end-of-life care). All health and social care staff should work closely together when managing patients with heart failure to learn from each other. Policy, practice and service user champions must be identified and supported to share the benefits of integrated care. Visible guidelines should prioritise integrated palliative care and heart failure so they become part of everyday practice.

The lived experience of renal cachexia: An interpretive phenomenological analysis.

Background: Chronic kidney disease is common, affecting up to 13 % of the global population, and is predicted to become the fifth leading cause of 'life years lost' by 2040. Individuals with end-stage kidney disease commonly develop complications such as protein-energy wasting and cachexia which further worsens their prognosis. The syndrome of 'renal cachexia' is poorly understood, under-diagnosed and even if recognised has limited treatment options. Objective: To explore the lived experience of renal cachexia for individuals with end-stage kidney disease and the interrelated experiences of their carers. Design: This interpretive phenomenological study was designed to facilitate an in-depth exploration of how patients and carers experience of renal cachexia. To improve and document the quality, transparency, and consistency of patient and public involvement in this study the Guidance for Reporting Involvement of Patients and the Public-Short Format was followed. Setting: The study was conducted across two nephrology directorates, within two healthcare trusts in the United Kingdom. Participants: Seven participants who met the inclusion criteria were recruited for this study, four patients (three female, one male) and three carers (two male, one female). Methods: We employed a purposive sampling strategy. Data collection was conducted between July 2022 and December 2023. Interviews were semi-structured, audio-recorded, transcribed verbatim and analysed in six steps by two researchers using interpretive phenomenological analysis. Ethical approval was approved by the Office for Research Ethics Committees Northern Ireland (Reference: 22/NI/0107). Results: Analysis generated six group experiential themes: the lived experience of appetite loss, functional decline and temporal coping, weight loss a visual metaphor of concern, social withdrawal and vulnerability, the emotional toll of eating challenges and psychological strain amidst a lack of information about cachexia. Conclusion: This is the first qualitative study exploring the lived experience of renal cachexia for patients and carers. Our study highlights that psycho-social and educational support is urgently needed. Additionally, healthcare professionals need better information provision to help them to recognise and respond to the needs of this population. Further research is required to develop models of holistic support which could help patients and carers cope with the impact of renal cachexia and optimally manage this syndrome within the family unit. Registration: N/A.

Developing and testing a community based, online vs. face-to-face peer led intervention to improve mental well-being in Cambodian adults with physical disabilities.

Background: Despite growing international attention, there remains an urgent need to develop mental health services within low and middle income countries. The Khmer Rouge period in Cambodia saw the destruction of all health services infrastructure in the 1970s. Consequently, Cambodia has struggled to rebuild both its economy and healthcare system, with the number of qualified mental health clinicians remaining disproportionately low. Resultantly, there is a pressing need to develop low-cost community based alternatives of mental healthcare. Methods: Using a mixed methods design, researchers developed an 8-week peer-led intervention, known as a Friendship Group, for adults with physical disabilities using both face-to-face and online delivery methods. The Wilcoxon Signed-Rank test was used to assess changes in pre-post survey scores and qualitative data was collected in form of five focus groups post intervention. Results: 41 participants were allocated across four Friendship groups - two were online and two face-to-face. Attrition rate was 22% post-intervention (n = 32). ITT analyses showed a statistically significant decrease in psychological distress scores [Z = -3.808, p < .001] from pre [Mdn = 20, IQR = 16.5-25.5] to post [Mdn = 16, IQR = 14-18.5] intervention. A Wilcoxon signed-ranks test also showed a statistically significant decrease in PTSD scores [Z = -2.239, p < .025] from pre [Mdn = 4, IQR = 3-5] to post [Mdn = 3, IQR = 2.75-4] intervention. There was also a statistically significant decrease in worry scores [Z = -3.904, p < .001] from pre [Mdn = 5, IQR = 3.5-6.5] to post [Mdn = 3, IQR = 3-4] intervention. There were no significant group differences between the face to face and online groups. A number of interconnected themes emerged from focus group data (n = 5), these included the mental health benefits of Friendship Groups as conceptualised through knowledge acquisition, skill development and peer support. Conclusions: The Friendship group intervention delivered in both online and face-to-face formats appears feasible and acceptable within the Cambodian context. Initial data revealed positive findings in terms of reduction in psychological distress, worry and PTSD symptoms as well increased feeling as calm.

Integrated palliative care in oncology: a protocol for a realist synthesis.

INTRODUCTION: Emerging evidence suggests improved quality of life, reduced symptom burden and lower health services costs when integrated palliative care and cancer care are implemented. Integrated palliative care aims to achieve care continuity by integrating organisational, administrative and clinical services involved in patient care networks. However, integrated palliative care for cancer is not common practice. This project, therefore, aims to understand how integrated palliative care and cancer care works in different healthcare settings (inpatient/outpatient), and for which groups of people (at what stage of the cancer journey), so we can develop guidance for optimal delivery. METHODS AND ANALYSIS: We will conduct a realist synthesis to develop a programme theory of how integrated palliative care in cancer works, for whom and in what contexts to achieve improved symptom management and quality of life for patients and their families.This realist synthesis will follow the five stages outlined by Pawson: (1) locating existing theories, (2) searching for evidence, (3) article selection, (4) extracting and organising data and (5) synthesising the evidence and drawing conclusions. We will work closely with our expert stakeholder group, which includes health and social care professionals providing palliative care and oncology; management and policy groups and members of the public and patients. We will adhere to RAMESES quality standards for undertaking a realist synthesis. ETHICS AND DISSEMINATION: Ethics approval for this project is not required.The realist synthesis will develop a programme theory that provides clarity on the optimal delivery of palliative care for adults with cancer. We will use the programme theory to coproduce guidance and user-friendly outputs, working with stakeholders to inform delivery of best practice. Findings will inform further research in integrated palliative care and cancer. Stakeholder engagement will assist in the dissemination of our findings. PROSPERO REGISTRATION NUMBER: CRD42023389791.

Allied health professional support for children and young adults living in and leaving care: A systematic scoping review.

BACKGROUND: Children and young people living in and leaving care are known to have experienced significant childhood adversity and trauma resulting in potentially deleterious impact on their health and well-being across the life course. Studies point to the complex needs of this population who may benefit from allied health professional (AHP)-related support with limited studies located. This review sought to address this gap by systematically scoping empirical literature focused on the provision of AHP support to this cohort of children and young adults to assist an understanding of the service needs for this vulnerable population. METHODS: This scoping review followed Arskey and O'Malley's five steps framework (2005) to identify and review relevant literature. A focus on identifying the evidence, challenges and gaps in research relating to AHP support for children and young people living in and leaving care was initially agreed, followed by a systematic search using a combination of three key concepts to identify relevant studies in five AHP disciplinary areas to identify best evidence in the past decade (2011-2021). Study inclusion criteria were based on empirical studies of children and young people living in care (0-17 years) and leaving care (18-25 years). A data extraction table was formulated as a means of charting the data, aligned with the scope and objectives of this review. Finally, data were subsequently collated, synthesised and reported based on key thematic areas emerging from included studies regarding AHP support to children and young people living in and leaving care. RESULTS: A total of 13 studies met the review inclusion criteria. Included studies reported specifically on speech and language therapist (SLT; n = 5), occupational therapist (OT; n = 3) and arts-based therapies (n = 5). No studies were identified with regard to the use of physiotherapy and dietetics with this population. Results indicated that children and young people living in and leaving care have high rates of speech, language, communication and sensory needs. More rigorous screening, assessment and early intervention were identified as essential for this vulnerable group. Increased multidisciplinary collaboration and OT support for young adults in preparation for transition to independent living was identified as an urgent requirement. Included studies indicate promising results in relation to access to arts-based therapies with particular reference to identity formation for children and young people living in and leaving care. CONCLUSIONS: Although evidence of effectiveness remains limited, AHP service provision (specifically speech and language therapy, occupational therapy and arts-based therapies) has the potential to contribute positively to addressing the complex and interacting needs of this vulnerable population. As a result, it is recommended that AHP service provision is integrated into the collaborative, multidisciplinary care available to children living in and leaving care. More extensive, higher quality research related to the benefits of AHP provision for this population of children and young people is essential to provide a more robust evidence base across the various professional disciplines that constitute allied health provision.

Integrating palliative care and heart failure: a systematic realist synthesis (PalliatHeartSynthesis).

OBJECTIVES: (1) Develop a programme theory of why, for whom and in what contexts integrated palliative care (PC) and heart failure (HF) services work/do not work; (2) use the programme theory to co-produce with stakeholders, intervention strategies to inform best practice and future research. METHODS: A systematic review of all published articles and grey literature using a realist logic of analysis. The search strategy combined terms significant to the review questions: HF, PC and end of life. Documents were included if they were in English and provided data relevant to integration of PC and HF services. Searches were conducted in November 2021 in EMBASE, MEDLINE, PsycINFO, AMED, HMIC and CINAHL. Further relevant documents were identified via monthly alerts (up until April 2023) and the project stakeholder group (patient/carers, content experts and multidisciplinary practitioners). RESULTS: 130 documents were included (86 research, 22 literature reviews, 22 grey literature). The programme theory identified intervention strategies most likely to support integration of PC and HF services. These included protected time for evidence-based PC and HF education from undergraduate/postgraduate level and continuing professional practice; choice of educational setting (eg, online, face-to-face or hybrid); increased awareness and seeing benefits of PC for HF management; conveying the emotive and intellectual need for integrating PC and HF via credible champions; and prioritising PC and HF guidelines in practice. CONCLUSIONS: The review findings outline the required steps to take to increase the likelihood that all key players have the capacity, opportunity and motivation to integrate PC into HF management. PROSPERO REGISTRATION NUMBER: CRD42021240185.

Media consumption and mental health during COVID-19 lockdown: a UK cross-sectional study across England, Wales, Scotland and Northern Ireland.

Aim: As individuals adjust to new 'norms' and ways of living during the COVID-19 lockdown, there is a continuing need for up-to-date information and guidance. Evidence suggests that frequent media exposure is related to a higher prevalence of mental health problems, especially anxiety and depression. The aim of this study was to determine whether COVID-19 related media consumption is associated with changes in mental health outcomes. Methods: This paper presents baseline data from the COVID-19 Psychological Wellbeing Study. The cross-sectional study data was collected using an online survey following the Generalised Anxiety Disorder scale (GAD-7) and the Patient Health Questionnaire (PHQ-9), with some other basic information collected. Logistic regression analysis was used to examine the influence of socio-demographic and media specific factors on anxiety and depression. Results: The study suggested that media usage is statistically significantly associated with anxiety and depression on the GAD-7 and PHQ-9 scales with excessive media exposure related to higher anxiety and depression scores. Conclusion: This study indicated that higher media consumption was associated with higher levels of anxiety and depression. Worldwide it should be acknowledged that excessive media consumption, particularly social media relating to COVID-19, can have an effect on mental health. However, as this was a cross-sectional study we cannot infer any directionality as we cannot infer cause and effect; therefore, future research involving longitudinal data collection and analyses of variables over time is warranted.

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.

'Getting involved in research': a co-created, co-delivered and co-analysed course for those with lived experience of health and social care services.

BACKGROUND: 'Getting Involved in Research' was co-created and delivered by a multi-organisational group to provide an accessible introduction to research for those with lived experience of health and social care services. METHOD: The evaluation of participants' perceptions adopted an exploratory mixed method research design and aimed to gather data to provide an in-depth understanding of the participants' experience of 'Getting Involved in Research' through the co-researchers' analysis of qualitative data using Participatory Theme Elicitation (PTE). PTE was used with the qualitative data to promote co-analysis by the course development group; analyses from an independent academic was also used to further validate the method of PTE. RESULTS: Thirty-five participants in total participated in 'Getting Involved in Research'. Age ranges varied from 19 to 73 years old. Participants were predominately female (n = 24), five males participated (n = 5) and there was one participant who identified as non-binary (n = 1). Six core themes were identified using the PTE approach: (1) A Meaningful Participatory Approach (2) Increasing the Confidence of Participants (3) Interactive Online Format (4) An Ambient Learning Environment (5) A Desire for Future Courses (6) A Balance of Course Content and Discussion. Participants in 'Getting Involved in Research' reported that the content of the training was applicable, relevant, fostered awareness of research methods and anticipated that it would support their involvement in research. CONCLUSION: 'Getting Involved in Research' has contributed innovatively to the evidence base for how to engage with and motivate those who have experience of health and social care to become actively involved in research. This study demonstrates that 'Getting Involved in Research' may be helpful to train those with lived experience and their care partners however, further research following up on the application of the course learning would be required to ascertain effectiveness. FUTURE DIRECTIONS: Future research should explore methods to apply research skills in practice to further develop participants' confidence in using the skills gained through 'Getting Involved in Research'.

The aim of this study was to gather information to help us understand the experience of participants' undertaking a research course called 'Getting Involved in Research'. A group of individuals including those with lived experience of health and social care services, academics, community and voluntary sector workers and a representative from the Department of Health in Northern Ireland worked together to develop a course to encourage and support people to engage with research. The 'Getting Involved in Research', course was designed to provide an understandable introduction to research for those people with lived experience of health and social care. We did this because research in health and social care sector should involve the patients and public who it is intended to help. The evaluation of the course had two distinct phases; we asked course participants to complete a survey before and after the course (pre- and post-course survey) and also asked them to complete a journal reflecting on their experiences after each lecture. This paper gives an overview of the profile of course participants and their responses to the survey questions. The survey answers were analysed using an approach to analysing information which encourages involvement from people with a range of experience of research methods, (known as Participatory Theme Elicitation). Thirty-five participants in total participated in 'Getting Involved in Research'. Age ranges varied from 19 to 73 years old. Participants were predominately female (n = 24), five males participated (n = 5) and there was one participant who identified as non-binary (n = 1). Participants in 'Getting Involved in Research' reported that the content of the course was relevant, encouraged awareness of research methods and encourage their future involvement in research.

Immersive 360° videos in health and social care education: a scoping review.

BACKGROUND: Research on the pedagogical use of immersive 360° videos is a rapidly expanding area within health and social care education. Despite this interest, there is a paucity of empirical data on its application. METHOD: A scoping review methodology framework was used to search for relevant articles published between 1970 and July 2021. Six databases were used to identify studies using immersive 360° videos for training and education purposes within health and social care: PubMed, Ovid Medline, Psych Info, Psych Articles, Cochrane Database and Embase. Research questions included: Is there any evidence that immersive 360° videos increase learning outcomes and motivation to learn in health and social care education? What are the key pedagogical concepts and theories that inform this area of research? What are the limitations of using immersive 360° videos within health and social education? The four dimensions contained within Keller's ARCS model (attention, relevance, confidence and satisfaction) frame the results section. RESULTS: Fourteen studies met our inclusion criteria. Learning outcomes confirm that immersive 360° videos as a pedagogical tool: increases attention, has relevance in skill enhancement, confidence in usability and user satisfaction. In particular, immersive 360° videos has a positive effect on the user's emotional response to the learning climate, which has a significant effect on users' motivation to learn. There was a notable lack of pedagogical theory within the studies retrieved and a general lack of clarity on learning outcomes. CONCLUSION: Studies examining the effectiveness of such interventions remains weak due to smaller sample sizes, lack of randomised control trials, and a gap in reporting intervention qualities and outcomes. Nevertheless, 360° immersive video is a viable alternative to VR and regular video, it is cost-effective, and although more robust research is necessary, learning outcomes are promising. FUTURE DIRECTIONS: Future research would do well to focus on interactivity and application of pedagogical theory within immersive 360° videos experiences. We argue that more and higher quality research studies, beyond the scope of medical education, are needed to explore the acceptability and effective implementation of this technology.

Psychological and social interventions for mental health issues and disorders in Southeast Asia: a systematic review.

BACKGROUND: Mental health issues and disorders are major public health challenges, particularly in low- and middle-income countries in Southeast Asia, where chronic shortages in mental health services and human resources exist. The development of effective and accessible mental health systems in Southeast Asia will require evidence based psychological and social interventions. This systematic review provides a narrative synthesis of the evidence on the effectiveness of such interventions for mental health issues and disorders in Southeast Asia. METHODS: A comprehensive literature search of 7 electronic databases (PsycINFO, Medline (Ovid), Cochrane library, EMBASE, SCOPUS, APA PsycArticles, and Social Care Online) was undertaken. RESULTS: Thirty two studies employing RCT designs to evaluate the effectiveness of a range of psychological and social mental health interventions on a number of different mental health outcomes were included in this review. The disparate intervention programmes reviewed were categorised as: lay delivered, yoga, aerobic and/or meditation based, cognitive behavioural therapy oriented, eye movement desensitization and reprocessing based (EMDR), health worker delivered, and hybrid programmes. The majority of the studies included in this review were of low to moderate quality due to the variability in the quality of the study design. The highest quality, and most promising evidence came from the evaluations of lay delivered interventions. This evidence demonstrates the feasibility and potential sustainability of implementing such interventions in resource constrained contexts. CONCLUSIONS: The review findings indicate that a disparate array of mental health interventions can be implemented effectively in a range of Southeast Asian mental health and health settings. There is a clear need for significantly more research however, through higher quality and larger scale RCTs before it will be known more definitively, if these interventions are effective, and for whom they are most effective in different Southeast Asian contexts.