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Purpose The aim of this study was to investigate the criterion validity and reliability of the Oral Symptom Assessment Scale (OSAS) in patients with advanced cancer receiving specialist palliative care. Methods To examine criterion validity, participants completed the OSAS, EORTC QLQ-C30 and EORTC QLQ-OH15. Twenty-four hours later participants repeated the OSAS to investigate test-retest reliability. Results 54 participants were recruited (median age 70; range : 35–93 years). 51 complete datasets were obtained. Cohen’s kappa test was used to evaluate the agreement for the presence / absence of symptoms on the OSAS on the first and second days (test-retest reliability). This analysis showed values of moderate and higher for agreement for all symptoms. All kappa values were statistically significant. The test-retest reliability for symptom severity, frequency and distress was assessed using Intraclass Correlation Coefficient. Spearman’s rank correlation coefficients were used to evaluate agreement between similar questions on the OSAS from day one and the EORTC QLQ-OH15 also on day one to examine criterion validity. Conclusion This study supports the validity of the OSAS, and provides evidence for the reliability of this novel oral symptom assessment tool, in patients with advanced cancer. Further research is needed to corroborate the findings of this study. Trial registration CancerTrials.gov registry registration no. : PM202166

Objective Research has shown that complicated grief has the potential to adversely affect bereaved individuals, and in this context, understanding how mental health professionals engage with it in practice is of relevance. Gaining an understanding of professionals’ knowledge, attitudes, skills and training in relation to complicated grief could provide insights that will inform their training and professional development. The aim of this study was to consider professionals’ engagement with complicated grief, as represented by self-reported knowledge, attitudes, skills and training. Methods The study used a three-phase mixed methods design (systematic review, qualitative interviews, and a quantitative survey) with empirical data being collected from psychologists, psychiatrists and counselor/psychotherapists. Results Analysis yielded 15 integrated findings across the three phases, which were grouped into two clusters: the first highlighted tension between professionals’ reported confidence and competence and the second explored the parameters and contribution of research and training in this area. Conclusion Professionals’ perception of their competence to work with complicated grief seems overstated and research and professional practice are not aligned. Practice implications These findings are positioned to inform empirically supported training that addresses identified deficits in professionals’ knowledge, attitudes and skills. It is important therefore that training is reflective of the needs of different professional groups.

Background: The provision of unscheduled healthcare for children with intellectual disability is less researched than that focused on hospital settings or for adult ser-vices. The aim of the scoping review was to map the evidence base in this area and identify areas for future study. Method: A five-stage scoping review framework was adopted. CINAHL, PubMed ,SCOPUS, PsycINFO, Embase, ProQuest Dissertation & Theses and Google Scholar were searched. Studies published in English after 1/1/2000 were considered eligible for inclusion. Results: A total of 3158 titles and abstracts were screened, 137 full-text articles were reviewed, and 25 papers met the inclusion criteria. Descriptive themes focused on inequities, needs and experiences of families', poor GP training, and limitations of existing evidence. Conclusion: Describing trends in healthcare utilisation by this population is valuable for monitoring quality of healthcare, however, addressing observed inequities will require approaches that recognise specific issues within the health system that result in inequities

Objectives: The aim of the present study was to explore how adults who self-harm experience family relationships. Methods: A phenomenological design was employed to examine the dynamic relationship between self-harm and family systems. Semi-structured interviews were conducted with six female adults who attend a community mental health service and engage in self-harm. Transcripts were analysed using Interpretative Phenomenological Analysis (IPA). Results: Four superordinate themes emerged from the data and two subordinate themes emerged within each superordinate theme: family interactive patterns (subordinate themes: enmeshed patterns and culture of ‘getting on with it’), searching for meaning (subordinate themes: expressing emotional turmoil and engrained worthlessness), relating to others (subordinate themes: guilt and feeling misunderstood) and journey towards life without self-harm (subordinate themes: acceptance and family support). Conclusions: Findings emphasise the role of family systems in understanding self-harm in adults. The study highlights the need for family-based interventions for family members who support adults that self-harm.

Introduction A diagnosis of chronic illness posed a serious threat to people during the recent COVID-19 pandemic. People with chronic illnesses were faced with increased mortality and reduced access to healthcare. Self-care is the process of maintaining health and managing a chronic illness. Nurses working in specialist services provide healthcare education to people with chronic illnesses. Access to these nurses was decreased during periods of the COVID-19 virus escalation due to the reconfiguration of services and redeployment of nurses. The purpose of the research was to learn from the experiences of people with a chronic illnesses in self-care behaviors and accessing altered healthcare services to inform future practices. Design A population survey design. Methods A mixed methods survey was designed, combining validated questionnaires and scales with open-ended questions. A convenience sample was utilized via using social media platforms. Data analysis included descriptive and inferential statistics. Content analysis was used to analyze open-ended responses. Results There were 147 responses, with approximately half reporting no changes in face-to-face healthcare contact, 41% reporting decreased contacts and 12% increased contacts. Non-face-to-face contacts were reduced by almost 9%, did not change by almost 60%, while 33% indicated an increase. Participants reported mixed perceptions in contact with healthcare providers during restrictions. In the Patient Assessment of Chronic Illness Care and the Self-Care of Chronic Illness scales, participants scored statistically lower scores than in previous studies. Participants indicated that public health restrictions negatively impacted their confidence, created challenges with re-engaging and that access to care was more difficult. Conclusion This research highlights the importance of providing continued support to people with chronic illness irrespective of other challenges to healthcare services. A structured approach to virtual self-care education is required. Clinical relevance This research concluded that the experience of access to one healthcare professional as opposed to diverse multidisciplinary input was similar for a number of chronic illnesses groups of people during the COVID-19 pandemic. There was an altered dynamic of virtual contacts with healthcare providers and a lack of confidence interpreting what monitoring was required by people with a chronic illnesses due to a lack of preparedness for virtual healthcare delivery. Funding Agencies|IReL

Family-centred care (FCC) has been established as a best practice model for child disability services internationally. However, further empirical support is required to explore the operationalization and efficacy of FCC, in the absence of a universal practice model. This review aimed to identify the key processes and outcomes of FCC in early intervention (EI) settings and the factors that impact FCC. A systemic review was conducted exploring the processes and outcomes of FCC delivered to children predominantly aged 0-6 years with disabilities/suspected disabilities and families as part of EI or early services. The search procedure was informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (Moher et al., 2009). Narrative analysis of data was guided by Braun and Clarke (2006, 2014). Data were presented as per the standards for reporting qualitative research (SRQR; O'Brien et al., 2014). Forty-two studies were included. The majority (90.5%) outlined the processes of FCC, with 59.5% of studies detailing outcomes. Processes were largely reported as qualitative data and/or subscales of the Measure of Processes of Care (MPOC; King et al., 1995), which were subsequently collated. Findings indicated eight key operational processes and corresponding outcomes. Variables that hinder or facilitate FCC included family/professional characteristics, family/service resources, and parent attitudes, engagement and agency. FCC was largely conceptualized as the application of services to children and their families. Critical perspectives on FCC are discussed. It is hoped this research will contribute to the development of a framework of FCC in EI to inform services provided to young children with complex needs and their families and future research.

Deinstitutionalisation has increased the likelihood of adults with intellectual disabilities residing in neighbourhoods either in staff-supported accommodation or in their family home. However, it raises the question of whether national policies on disability have translated into practice actions by service providers that result in positive social inclusion outcomes for individuals. This study examined the practice initiatives supporting social inclusion in neighbourhoods in specialist state-funded service providers for adults with intellectual disabilities. Using a mixed methods design, CEOs/service leaders of 40 organisations completed an online survey. Follow-up interviews were completed with a randomised sample. Shifting towards new service models and strategic links with mainstream organisations were most often mentioned as furthering social inclusion goals. A wide range of service initiatives were reported, with positive outcomes alongside a range of challenges. Service providers play an important role in providing individualised supports that foster local engagement. However, the service context is complex and service leaders have reported many challenges that may impede progress on social inclusion.

Background: Blogging can help to maximise the impact of one’s work in academia and beyond by making research findings accessible for multiple knowledge users, such as healthcare professionals and the public, as well as other researchers. As part of the knowledge exchange and dissemination activities of the Model for Dementia Palliative Care Project, this study explored stakeholders’ views of blogs as a means to translate research findings.Methods: A web-based survey was developed, piloted, and revised. It was distributed electronically via key dementia and palliative care organisations websites, newsletters, social media platforms, and within the staff mailing lists of five Universities in Ireland. Data were analysed using descriptive statistics and content analysis.Results: Complete responses were received from 128 participants. The majority of respondents were healthcare researchers (n=53), followed by healthcare providers (n=46). The preferred methods of reviewing research findings were scientific papers, websites and news articles. Respondents read healthcare blogs “sometimes” (39.1%), with Conclusions: Despite respondents choosing a scientific paper as their preferred method to consume research findings, many indicated an openness to reading blogs on their area of interest. Creating concise, relevant, and credible blogs, and suitably promoting them, could increase the impact and reach of healthcare research, such as in the emerging field of dementia palliative care, and thus promote translation of research findings into practice.

BackgroundDecision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood.ObjectivesTo identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care.MethodsA systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text.ResultsAfter full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other’s preferences for care. Patients’ advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers.ConclusionsPatients and family caregivers in palliative care can accommodate each other’s preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.

Older people with dementia have multiple palliative care needs, with pain, agitation, dyspnoea, aspiration and pressure ulcers being common and persistent in advanced dementia. Anticipating the person’s possible symptoms requires knowledge of the whole person, including the type of dementia, which is problematic when the dementia type is often not documented. A palliative care approach to dementia should look at symptoms across the four pillars of palliative care, but in reality, we tend to over-focus on physical and psychological symptoms, while spiritual and emotional needs can be overlooked, especially around the time of diagnosis, where such needs may be significant. Advance care planning (ACP) is a central tenet of good dementia palliative care, as the person may lose their ability to communicate and make complex decisions over time. Despite this, care planning is often approached too late, and with the person’s family rather than with the person; much of the literature on ACP in dementia is based on proxy decision-making for people in residential care. Thus, we need a paradigm shift in how we approach dementia, beginning with timely diagnosis that includes the dementia type, and with services able to assess and meet emotional and spiritual needs especially around the time of diagnosis, and with timely ACP as an integral part of our overall approach.

Alongside calls in the literature for research skills development for undergraduates, University College Dublin’s College of Social Sciences and Law (CoSSL) has identified a need for research skills education for its new Bachelor of Social Sciences programme. In collaboration, academics and the library have created a new course, the Social Sciences Research Accelerator, designed to provide foundational learning of research skills for students transitioning to conduct research projects in their final year. Preliminary testing of the course, which included a small user-testing group of undergraduates who engaged with course activities and then completed a survey evaluation, has been positive. This paper details the partnership between academics and library staff toward a common scholarship goal, including the creation of learning materials, early testing of content, and future work. University College Dublin College of Social Sciences and Law 2020-12-15 JG: external coverpage removed from PDF

PurposeThe Model for Dementia Palliative Care Project will develop a service-delivery model for community-based dementia palliative care. Many countries provide dementia palliative care services, albeit with considerable variability within these. However, little is known about what service providers consider to be the most important components of a dementia palliative care model. This study aimed to address this knowledge gap.Design/methodology/approachAn exploratory design using a survey method was used as an initial phase of the wider project. A web-based survey was developed, piloted (n = 5), revised, and distributed within five healthcare jurisdictions: the Republic of Ireland, Northern Ireland, England, Scotland, and Wales. The target population was health and social care professionals, policymakers, and academics interested in dementia and palliative care. Content analysis of open-ended questions identified common themes; descriptive statistics were applied to the closed-ended questions.FindingsOverall, N = 112 complete surveys were received. Key care principles incorporated the philosophies of palliative care and dementia care; many described “holistic” and “person-centred care” as the core. Important individual service components were the support for carers, advanced care planning, information, education and training, activities for “meaningful living”, comprehensive disease management, coordinated case management, and linking with community health services and social activities. Barriers included poor availability and organisation of healthcare services, stigma, misconceptions around dementia prognosis, insufficiently advanced care planning, and dementia-related challenges to care. Facilitators included education, carer support, and therapeutic relationships.Originality/valueThis study, as part of the larger project, will directly inform the development of a novel service delivery Model of Dementia Palliative Care for Ireland. The results can also inform service planning and design in other countries.

Background: Due to increasing evidence of efficacy in treating mental health disorders, psilocybin may become a legal medicinal drug. This study tested the validity of Carhart-Harris & Nutt (2017) model of extra-pharmacological (EP) factors and examined whether such factors should be taken into account in any psychological suitability test for medicinally prescribed psilocybin. Method: 219 participants (101 self-identified females, 109 males, 7 non-binary people and 2 who preferred not to say), with an age range of 18 to 68, completed three online measures of ‘personality’; ‘set, setting and intention’, and the ‘Attitudes Towards Psilocybin’ (ATP) scale. The sample was equally divided between those who had used psychedelics (52.1%) and those who had no previous psychedelic use (47.5%). A series of stepwise linear regressions were run to examine of extra-pharmcological factor predictors of ATP. Results: The ATP scale was tested in terms of its reliability, construct validity, determinant validity and was deemed an appropriate measure. A model consisting of Set, Openness to Experience and Extraversion significantly predicted ATP scores. Conclusion: These findings supported the EP model and suggest that a suitability test may be a useful tool when determining whether a prescription of psilocybin is an appropriate course of treatment.

Aim To explore the mobilization of nurses/midwives in a designated hospital group in Ireland during a global pandemic. Background The recent global pandemic has resulted in the large-scale worldwide mobilization of registered nurses and midwives working in the acute care sector. There is a dearth of literature reporting the mobilization of this professional workforce. Method Mixed-methods design using an electronic survey and facilitated discussion across one Irish hospital group. Results Eight of 11 hospitals responded to the survey. There was a 2% vacancy rate prior to the pandemic. Mobilization included reconfiguration of clinical areas and redeployment of 9% of the nursing/midwifery workforce within 2 weeks of the pandemic. A total of 11% (n = 343) of nurses/midwives were redeployed in 3 months. Nurses/midwives required re-skilling in infection prevention control, enhancement of critical care skills and documentation. Conclusions Three key areas were identified to enable the nursing workforce readiness. These are referred to as the three 'R's': Reconfiguration of specific resources, Redeployment of nurses to dedicated specialist areas and Re-skilling of nurses to safely care for the patients during the pandemic. Implications for nursing management A centralized approach to reconfiguration of clinical areas. Redeployment is enabled by closing non-essential departments. Hands-on re-skilling and reorientating staff are essential.

Background: Out-of-hospital cardiac arrest (OHCA) is a major cause of premature mortality. Survival is possible when timely cardiopulmonary resuscitation and defibrillation are available in the community. GPs are well placed to provide early OHCA care and significantly increased rates of survival are achieved when GPs participate in resuscitation. A novel project alerts volunteer GP first responders to nearby OHCAs in Ireland. Objectives: To explore the reasons why GPs volunteer to be OHCA first responders and their experience of participation. Methods: A qualitative study involving in-depth, semi-structured interviews followed by thematic analysis was undertaken in 2017/18. Fourteen GPs from differing geographical areas in Ireland, who volunteered as OHCA first-responders were recruited to participate by purposive methods. Results: GP participation in OHCA voluntary first response was understood as a function of GPs relationship to the community, their ability to manage competing demands in their personal and professional lives and also specific participatory gains. GPs expressed both altruistic motivations and a sense of obligation. GPs described a complex, multifaceted role in providing OHCA first response; they derived an inherent sense of satisfaction in delivering potentially life-saving interventions but also in the provision of holistic, compassionate end-of-life care for patients and their families. Participation was not without psychosocial risk for GPs. Conclusion: GPs volunteer to provide early OHCA emergency care because of their relationship to the community. Care provided is complex and includes both resuscitation and end-of-life care.

Background Respite care has traditionally been conceptualised as a short residential break which allows families a break from caring responsibilities. In recent years, alternative respite services have been developed which promote greater social integration and normalisation for people with intellectual and other disabilities. Specific aim: The present study sought to explore the views of service managers and families on the definitions, aims, outcomes and general experiences of these programmes among a sample of adults with intellectual disabilities (ID) using a range of alternative respite services. Method Participants were managers of respite services for people with ID (n = 6) and family members (predominantly parents, n = 32) of adults receiving respite services from these organisations. All participants were provided with appropriate information on the study and gave consent. Semi-structured interviews were used to explore participants’ perspectives on alternative respite provision for adults with ID. Data were analysed using thematic analysis, with multiple analysts involved to allow for reflection on the interpretation of data. Findings Managers and families showed diversity in the conceptualisations of respite services, with themes highlighting the importance of the break for both people with ID and families, as well as a clear focus on the needs of and developmental outcomes for the person with ID. As such respite was viewed as both a model of service and an outcome for families and individuals with ID. These differing views appeared to have implications for views on who was the target beneficiary of respite. Discussion The present study reflects alternative respite as a diverse experience for people with ID, their family members and the service providers supporting them. Nevertheless, views were generally positive. Further consideration of the nature of respite services beyond the traditional conceptualisation is warranted.

Background The Model for Dementia Palliative Care Project will develop a service delivery model for community-based dementia palliative care in Ireland. This responds to palliative care now being recognised as a priority in care for people with dementia. Various dementia palliative care services exist internationally, however little is known about what the service providers would deem to be the most important aspects of service provision. The aim of this study was to identify what key stakeholders consider to be essential components of a model of dementia palliative care. Methods A web-based survey was developed, piloted (n=5), and revised. It was distributed electronically within five healthcare jurisdictions, in the Republic of Ireland, Northern Ireland, England, Scotland, and Wales. The target population was healthcare professionals, policy-makers, and academics, with an interest in dementia and palliative care. Content analysis of open ended questions was used to identify common themes within the data. Results Complete surveys were received from 112 stakeholders. The majority of respondents were female (86%). Identified key principles of care incorporated the philosophies of palliative care and good dementia care, with many describing ‘holistic’ and ‘person-centred care’ as core. Important individual components were identified, including support for carers, advanced care planning, information, education and training, activities for ‘meaningful living’, comprehensive disease management, coordinated case management, and linking in with community health services and social activities. Barriers to the model were identified at three levels: ‘(mis)understanding of dementia palliative care’, ‘application of dementia palliative care’ and ‘wider service organisation’. Conclusion Numerous components of a ‘good’ model were identified, along with possible barriers to implementation of the model. This study, as part of the larger project, will inform a model of dementia palliative care for the Irish Healthcare system with the potential to improve the experiences of people with dementia and their families.

Due to increasing evidence of efficacy in treating mental health disorders, psilocybin may become a legal medicinal drug. This study tested the validity of Carhart-Harris and Nutt’s (2017) model of extra-pharmacological (EP) factors. It examined whether such factors should be considered in any psychological suitability test for medicinally prescribed psilocybin. Two hundred nineteen participants (101 self-identified females, 109 males, seven nonbinary people, and two who preferred not to say), in an age range of 18 to 68 years, completed three online measures of personality— Set, Setting, and Intention—and the Attitudes Toward Psilocybin (ATP) scale. The sample was equally divided between those who had used psychedelics (52.1%) and those who had no previous psychedelic use (47.5%). A series of stepwise linear regressions were run to examine whether EP factors predicted ATP scores. The ATP scale was tested for reliability, construct validity, and determinant validity and was deemed an appropriate measure. A model consisting of a positive Set, Openness to Experience, and lower Extraversion significantly predicted ATP scores. These findings supported the EP model and suggested that a suitability test may be a useful tool when determining whether a prescription of psilocybin is an appropriate course of treatment.

BACKGROUND Research indicates that adults with intellectual disabilities are living longer. However, there is limited research on how this affects health and care needs. OBJECTIVE The present study aimed to examine the health and social care needs of older adults with intellectual disabilities in Ireland using multiple informants. METHODS Data were gathered from a sample of 20 adults aged 50 years or older (Mean = 59.1, SD = 5.9, range = 50-72; 11 female). The sample included individuals with mild (n = 7), moderate (n = 10) and severe/profound (n = 3) intellectual disabilities. Additional data from keyworkers (n = 19) and family carers (n = 15) provided a more complete understanding of needs. RESULTS Results revealed some areas of agreement and difference between adults with intellectual disability and their carers regarding the social care, employment, retirement, physical and mental health needs of this population. CONCLUSIONS The findings of this study have potential implications for the provision of high-quality services for older adults with intellectual disabilities.

Modularisation has supported great flexibility in curriculum pathways. However, there has been little guidance to staff on the module credit weighting that is optimum to allow for this flexibility without compromising student engagement. Student engagement can include, for example, student's time and effort (workload), their participation, interest in the subject and their deeper learning. The UCD School of HIstory, with a standard module credit weighting of five ECTs credits, set out to move to 10 credit modules and to redesign for the enhancement of student engagement in their final year. Using a mixed-method approach, over a three year period student and staff views and experiences of the redesign were explored (n=187 module offerings). The themes identified are explored through the lens of Kahu's (2013) student engagement framework, with evidence of increased engagement of students and staff satisfaction with the design change.

This qualitative study explores the perceptions of impact associated with engaging in a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Interviews were completed with 12 parents who had participated in a three-camp cycle of the program over 12-month period, including a subgroup who had also attended a reunion camp. Interviews were also conducted with program staff. Thematic analysis generated key themes relating to the perceived impact which suggest that those engaged in this program perceived positive contributions associated with participation, including perceptions of positive impact on coping with bereavement, access to support and implications for family functioning. This study highlights the areas of impact associated with engagement in a therapeutic recreation-based bereavement intervention, and the potential contribution of wider access to these programs for families whose child has died from serious illness.

Background The self-management of osteoarthritis (OA) and low back pain (LBP) through activity and skills (SOLAS) theory-driven group-based complex intervention was developed primarily for the evaluation of its acceptability to patients and physiotherapists and the feasibility of trial procedures, to inform the potential for a definitive trial. Methods This assessor-blinded multicentre two-arm parallel cluster randomised controlled feasibility trial compared the SOLAS intervention to usual individual physiotherapy (UP; pragmatic control group). Patients with OA of the hip, knee, lumbar spine and/or chronic LBP were recruited in primary care physiotherapy clinics (i.e. clusters) in Dublin, Ireland, between September 2014 and November 2015. The primary feasibility objectives were evaluated using quantitative methods and individual telephone interviews with purposive samples of participants and physiotherapists. A range of secondary outcomes were collected at baseline, 6 weeks (behaviour change only), 2 months and 6 months to explore the preliminary effects of the intervention. Analysis was by intention-to-treat according to participants’ cluster allocation and involved descriptive analysis of the quantitative data and inductive thematic analysis of the qualitative interviews. A linear mixed model was used to contrast change over time in participant secondary outcomes between treatment arms, while adjusting for study waves and clusters. Results Fourteen clusters were recruited (7 per trial arm), each cluster participated in two waves of recruitment, with the average cluster size below the target of six participants (intervention: mean (SD) = 4.92 (1.31), range 2–7; UP: mean (SD) = 5.08 (2.43), range 1–9). One hundred twenty participants (83.3% of n = 144 expected) were recruited (intervention n = 59; UP n = 61), with follow-up data obtained from 80.8% (n = 97) at 6 weeks, 84.2% (n = 101) at 2 months and 71.7% (n = 86) at 6 months. Most participants received treatment as allocated (intervention n = 49; UP n = 54). The qualitative interviews (12 participants; 10 physiotherapists (PTs) found the intervention and trial procedures acceptable and appropriate, with minimal feasible adaptations required. Linear mixed methods showed improvements in most secondary outcomes at 2 and 6 months with small between-group effects. Conclusions While the SOLAS intervention and trial procedures were acceptable to participants and PTs, the recruitment of enough participants is the biggest obstacle to a definitive trial. Trial registration ISRCTN ISRCTN49875385. Registered on 26 March 2014.

Aims To identify the key common components of knowledge transfer and exchange in existing models to facilitate practice developments in health services research. Background There are over 60 models of knowledge transfer and exchange designed for various areas of health care. Many of them remain untested and lack guidelines for scaling-up of successful implementation of research findings and of proven models ensuring that patients have access to optimal health care, guided by current research. Design A scoping review was conducted in line with PRISMA guidelines. Key components of knowledge transfer and exchange were identified using thematic analysis and frequency counts. Data sources Six electronic databases were searched for papers published before January 2015 containing four key terms/variants: knowledge, transfer, framework, health care. Review methods Double screening, extraction and coding of the data using thematic analysis were employed to ensure rigour. As further validation stakeholders' consultation of the findings was performed to ensure accessibility. Results Of the 4,288 abstracts, 294 full-text articles were screened, with 79 articles analysed. Six key components emerged: knowledge transfer and exchange message, Stakeholders and Process components often appeared together, while from two contextual components Inner Context and the wider Social, Cultural and Economic Context, with the wider context less frequently considered. Finally, there was little consideration of the Evaluation of knowledge transfer and exchange activities. In addition, specific operational elements of each component were identified. Conclusions The six components offer the basis for knowledge transfer and exchange activities, enabling researchers to more effectively share their work. Further research exploring the potential contribution of the interactions of the components is recommended.

Children’s self-esteem/self-concept, a core psychological construct, has been measured in an overwhelming number of studies, and the widespread use of such measures should indicate they have well-established content validity, internal consistency and factor structures. This study, sampling a demographically representative cohort in late childhood/early adolescence in Dublin, Ireland (total n = 651), examined three major self-esteem/self-concept scales designed for late childhood/early adolescence: Piers-Harris Self-Concept Scale for Children 2 (Piers et al. 2002), Self-Description Questionnaire I (Marsh 1992) and Self-Perception Profile for Children (Harter 1985). It also examined findings in light of the salient self factors identified by participants in a linked mixed-methods study. The factor structure of Piers-Harris Self-Concept Scale was not replicated. The Self-Description Questionnaire I and Self-Perception Profile for Children were replicated only in part although in similar ways. In all three scales, a global/ appearance self evaluation factor accounted for the largest variance in factor analyses. Sport/athletic ability, school ability, school enjoyment, maths and reading ability/enjoyment, behaviour, peer popularity, and parent factors were also identified but did not always reflect existing scale structures. Notably, the factors extracted, or items present in these scales, often did not reflect young people’s priorities, such as friendship over popularity, the importance of family and extended family members, and the significance of incremental personal mastery in activities rather than assessing oneself as comparatively good at preferred activities. The findings raise questions about how self-esteem/self-concept scales are used and interpreted in research with children and young people.

In order to ensure the effective transfer of research knowledge to those who can effect positive changes in practice, models of knowledge transfer and exchange (KTE) are required. Limited evidence exists as to how palliative care researchers use existing models to support their practice and to what extent they are perceived as effective. We set out to identify factors that influence KTE planning and implementation through semistructured interviews with experienced palliative care researchers in Ireland. Issues around KTE were drawn out through thematic analysis. Nine interviews were held with investigators on eight research projects. Ten themes were identified and categorised as either barriers or facilitators to KTE. Perceived barriers included inadequate time and funding, limited institutional capacity, competing priorities, weak communication channels and negative perceptions of palliative care. Perceived facilitators included dedicated time and resources, aligned priorities, strong professional networks, multipronged approach and KTE experience. In order to improve the quality, acceptability and reach of palliative research, it is vital that researchers improve their understanding of KTE within the context of palliative care, moving beyond academic dissemination to achieve research-informed practice by overcoming barriers to KTE through facilitated action. This study provides an overview of factors that influence KTE planning and implementation among palliative care researchers.

Background The Self-management of Osteoarthritis (OA) and Low back pain (LBP) through Activity and Skills (SOLAS) theory-driven group-based complex intervention was developed primarily for the evaluation of its acceptability to patients and physiotherapists and the feasibility of trial procedures, to inform the potential for a definitive trial. Methods This assessor-blinded multicentre two-arm parallel cluster randomised controlled feasibility trial compared the SOLAS intervention to usual individual physiotherapy (UP; pragmatic control group). Patients with OA of the hip, knee, lumbar spine and/or chronic LBP were recruited in primary care physiotherapy clinics (i.e. clusters) in Dublin, Ireland between September 2014 and November 2015. The primary feasibility objectives were evaluated using quantitative methods and individual telephone interviews with purposive samples of participants and physiotherapists. A range of secondary outcomes were collected at baseline, 6 weeks (behaviour change only), 2 months and 6 months to explore the preliminary effects of the intervention. Analysis was by intention-to-treat according to participants’ cluster allocation and involved descriptive analysis of the quantitative data and inductive thematic analysis of the qualitative interviews. A linear mixed model was used to contrast change over time in participant secondary outcomes between treatment arms, while adjusting for study waves and clusters. Results 14 clusters were recruited (7 per trial arm), each cluster participated in two waves of recruitment, with the average cluster size below the target of six participants (Intervention: mean (SD) =4.92 (1.31), range 2-7; UP: mean (SD) =5.08 (2.43), range 1-9). 120 participants (83.3% of n=144 expected) were recruited (Intervention n=59; UP n=61), with follow up data obtained from 80.8% (n=97) at 6 weeks, 84.2% (n=101) at 2 months and 71.7% (n=86) at 6 months. Most participants received treatment as allocated (Intervention n=49; UP n=54). The qualitative interviews (12 participants; 10 PTs) found the Intervention and trial procedures acceptable and appropriate, with minimal feasible adaptations required. Linear mixed methods showed improvements in most secondary outcomes at 2 and 6 months with small between group effects. Conclusions While the SOLAS intervention and trial procedures were acceptable to participants and PTs, the recruitment of enough participants is the biggest obstacle to a definitive trial. Trial Registration: ISRCTN Registry, ISRCTN49875385, Registered 26 March 2014. https://doi.org/10.1186/ISRCTN49875385

BACKGROUND: Periodontal (gum) disease and dental caries (tooth decay) are the most common causes of tooth loss; dental plaque plays a major role in the development of these diseases. Effective oral hygiene involves removing dental plaque, for example, by regular toothbrushing. People with intellectual disabilities (ID) can have poor oral hygiene and oral health outcomes.OBJECTIVES: To assess the effects (benefits and harms) of oral hygiene interventions, specifically the mechanical removal of plaque, for people with intellectual disabilities (ID).SEARCH METHODS: Cochrane Oral Health's Information Specialist searched the following databases to 4 February 2019: Cochrane Oral Health's Trials Register, the Cochrane Central Register of Controlled Trials (CENTRAL; Cochrane Register of Studies), MEDLINE Ovid, Embase Ovid and PsycINFO Ovid. ClinicalTrials.gov and the World Health Organization International Clinical Trials Registry Platform were searched for ongoing trials. The Embase search was restricted by date due to the Cochrane Centralised Search Project, which makes available clinical trials indexed in Embase through CENTRAL. We handsearched specialist conference abstracts from the International Association of Disability and Oral Health (2006 to 2016).SELECTION CRITERIA: We included randomised controlled trials (RCTs) and some types of non-randomised studies (NRS) (non-RCTs, controlled before-after studies, interrupted time series studies and repeated measures studies) that evaluated oral hygiene interventions targeted at people with ID or their carers, or both. We used the definition of ID in the International Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD-10). We defined oral hygiene as the mechanical removal of plaque. We excluded studies that evaluated chemical removal of plaque, or mechanical and chemical removal of plaque combined.DATA COLLECTION AND ANALYSIS: At least two review authors independently screened search records, identified relevant studies, extracted data, assessed risk of bias and judged the certainty of the evidence according to GRADE criteria. We contacted study authors for additional information if required. We reported RCTs and NRSs separately.MAIN RESULTS: We included 19 RCTs and 15 NRSs involving 1795 adults and children with ID and 354 carers. Interventions evaluated were: special manual toothbrushes, electric toothbrushes, oral hygiene training, scheduled dental visits plus supervised toothbrushing, discussion of clinical photographs showing plaque, varied frequency of toothbrushing, plaque-disclosing agents and individualised care plans. We categorised results as short (six weeks or less), medium (between six weeks and 12 months) and long term (more than 12 months).Most studies were small; all were at overall high or unclear risk of bias. None of the studies reported quality of life or dental caries. We present below the evidence available from RCTs (or NRS if the comparison had no RCTs) for gingival health (inflammation and plaque) and adverse effects, as well as knowledge and behaviour outcomes for the training studies.Very low-certainty evidence suggested a special manual toothbrush (the Superbrush) reduced gingival inflammation (GI), and possibly plaque, more than a conventional toothbrush in the medium term (GI: mean difference (MD) -12.40, 95% CI -24.31 to -0.49; plaque: MD -0.44, 95% CI -0.93 to 0.05; 1 RCT, 18 participants); brushing was carried out by the carers. In the short term, neither toothbrush showed superiority (GI: MD -0.10, 95% CI -0.77 to 0.57; plaque: MD 0.20, 95% CI -0.45 to 0.85; 1 RCT, 25 participants; low- to very low-certainty evidence).Moderate- and low-certainty evidence found no difference between electric and manual toothbrushes for reducing GI or plaque, respectively, in the medium term (GI: MD 0.02, 95% CI -0.06 to 0.09; plaque: standardised mean difference 0.29, 95% CI -0.07 to 0.65; 2 RCTs, 120 participants). Short-term findings were inconsistent (4 RCTs; low- to very low-certainty evidence).Low-certainty evidence suggested training carers in oral hygiene care had no detectable effect on levels of GI or plaque in the medium term (GI: MD -0.09, 95% CI -0.63 to 0.45; plaque: MD -0.07, 95% CI -0.26 to 0.13; 2 RCTs, 99 participants). Low-certainty evidence suggested oral hygiene knowledge of carers was better in the medium term after training (MD 0.69, 95% CI 0.31 to 1.06; 2 RCTs, 189 participants); this was not found in the short term, and results for changes in behaviour, attitude and self-efficacy were mixed.One RCT (10 participants) found that training people with ID in oral hygiene care reduced plaque but not GI in the short term (GI: MD -0.28, 95% CI -0.90 to 0.34; plaque: MD -0.47, 95% CI -0.92 to -0.02; very low-certainty evidence).One RCT (304 participants) found that scheduled dental recall visits (at 1-, 3- or 6-month intervals) plus supervised daily toothbrushing were more likely than usual care to reduce GI (pocketing but not bleeding) and plaque in the long term (low-certainty evidence).One RCT (29 participants) found that motivating people with ID about oral hygiene by discussing photographs of their teeth with plaque highlighted by a plaque-disclosing agent, did not reduce plaque in the medium term (very low-certainty evidence).One RCT (80 participants) found daily toothbrushing by dental students was more effective for reducing plaque in people with ID than once- or twice-weekly toothbrushing in the short term (low-certainty evidence).A benefit to gingival health was found by one NRS that evaluated toothpaste with a plaque-disclosing agent and one that evaluated individualised oral care plans (very low-certainty evidence).Most studies did not report adverse effects; of those that did, only one study considered them as a formal outcome. Some studies reported participant difficulties using the electric or special manual toothbrushes.AUTHORS' CONCLUSIONS: Although some oral hygiene interventions for people with ID show benefits, the clinical importance of these benefits is unclear. The evidence is mainly low or very low certainty. Moderate-certainty evidence was available for only one finding: electric and manual toothbrushes were similarly effective for reducing gingival inflammation in people with ID in the medium term. Larger, higher-quality RCTs are recommended to endorse or refute the findings of this review. In the meantime, oral hygiene care and advice should be based on professional expertise and the needs and preferences of the individual with ID and their carers.

Involving patients in research broadens a researcher’s field of influence and may generate novel ideas. Preclinical research is integral to the progression of innovative healthcare. These are not patient-facing disciplines and implementing meaningful public and patient involvement (PPI) can be a challenge. A discussion forum and thematic analysis identified key challenges of implementing public and patient involvement for preclinical researchers. In response we developed a “PPI Ready” planning canvas. For contemporaneous evaluation of public and patient involvement, a psychometric questionnaire and an open source tool for its evaluation were developed. The questionnaire measures information, procedural and quality assessment. Combined with the open source evaluation tool, researchers are notified if public and patient involvement is unsatisfactory in any of these areas. The tool is easy to use and adapts a psychometric test into a format familiar to preclinical scientists. Designed to be used iteratively across a research project, it provides a simple reporting grade to document satisfaction trend over the research lifecycle.

Involving patients in research broadens a researchers field of influence and may generate novel ideas. Basic and preclinical research is integral to the progression of innovative healthcare. These are not patient-facing disciplines and implementing meaningful patient and public involvement (PPI) can be a challenge. A discussion forum and thematic analysis identified key challenges of implementing PPI for preclinical researchers. In response we developed a strategic planning tool, called PPI Ready Researcher Planning Canvas. For contemporaneous evaluation of PPI, a psychometric questionnaire and an open source tool for its evaluation were developed. The questionnaire measures information, procedural and quality assessment. Combined with the open source evaluation tool, researchers are notified if PPI is unsatisfactory in any of these areas. The tool is easy to use and adapts a psychometric test into a format familiar to preclinical scientists. Designed to be used iteratively across a research project, it provides a simple reporting grade to document satisfaction trend over the research lifecycle.

BACKGROUND By adaptation of the face-to-face physiotherapist-training program previously used in the Self-management of Osteoarthritis and Low back pain through Activity and Skills (SOLAS) feasibility trial, an asynchronous, interactive, Web-based, e-learning training program (E-SOLAS) underpinned by behavior and learning theories was developed. OBJECTIVE This study investigated the effect of the E-SOLAS training program on relevant outcomes of effective training and implementation. METHODS Thirteen physiotherapists from across Ireland were trained via E-SOLAS by using mixed methods, and seven physiotherapists progressed to implementation of the 6-week group-based SOLAS intervention. The effectiveness of E-SOLAS was evaluated using the Kirkpatrick model at the levels of reaction (physiotherapist engagement and satisfaction with E-SOLAS training methods and content), learning (pre- to posttraining changes in physiotherapists’ confidence and knowledge in delivering SOLAS content and self-determination theory-based communication strategies, administered via a SurveyMonkey questionnaire), and behavior (fidelity to delivery of SOLAS content using physiotherapist-completed weekly checklists). During implementation, five physiotherapists audio recorded delivery of one class, and the communication between physiotherapists and clients was assessed using the Health Care Climate Questionnaire (HCCQ), the Controlling Coach Behaviour Scale (CCBS), and an intervention-specific measure (ISM; 7-point Likert scale). A range of implementation outcomes were evaluated during training and delivery (ie, acceptability, appropriateness, feasibility, fidelity, and sustainability of E-SOLAS) using a posttraining feedback questionnaire and individual semistructured telephone interviews. RESULTS With regard to their reaction, physiotherapists (n=13) were very satisfied with E-SOLAS posttraining (median 5.0; interquartile range 1.0; min-max 4.0-5.0) and completed training within 3-4 weeks. With regard to learning, there were significant increases in physiotherapists’ confidence and knowledge in delivery of all SOLAS intervention components (P.05). In terms of behavior, physiotherapists delivered SOLAS in a needs supportive manner (HCCQ: median 5.2, interquartile range 1.3, min-max 3.7-5.8; CCBS: median 6.6, interquartile range 1.0, min-max 5.6-7.0; ISM: median 4.5, interquartile range 1.2, min-max 2.8-4.8). Fidelity scores were high for SOLAS content delivery (total %mean fidelity score 93.5%; SD 4.9%). The posttraining questionnaire and postdelivery qualitative interviews showed that physiotherapists found E-SOLAS acceptable, appropriate, feasible, and sustainable within primary care services to support the implementation of the SOLAS intervention. CONCLUSIONS This study provides preliminary evidence of the effectiveness, acceptability, and feasibility of an e-learning program to train physiotherapists to deliver a group-based self-management complex intervention in primary care settings, which is equivalent to face-to-face training outcomes and would support inclusion of physiotherapists in a definitive trial of SOLAS.