Nuriye Kupeli

A confirmatory factor analysis and validation of the forms of self-criticism/reassurance scale

OBJECTIVE Several studies have used the Forms of Self-Criticism/Reassurance Scale (FSCRS; Gilbert, Clarke, Hempel, Miles, & Irons, 2004) when exploring the role of emotion regulation in psychopathology. However, psychometric evaluation of the FSCRS is limited. The present study sought to confirm the factor structure of the FSCRS based on theoretical and empirical grounds in a large sample of the general population. METHOD The FSCRS was completed by a large sample of men and women (N= 1,570) as part of an online survey. The data were randomly split in order to perform both independent exploratory (EFA) and confirmatory factor analyses (CFA). One-, two- and three-factor solutions were examined. RESULTS A three-factor model of reassured-self (RS) and the two types of self-criticism, inadequate-self (IS), and hated-self (HS), proved to be the best-fitting measurement model in this sample (χ(2) = 800.3, df= 148, p < .001; CFI [comparative fit index]= .966, TLI [Tucker Lewis index]= .961, RMSEA [root mean square error of the approximation]= .074). Although very similar to the original questionnaire, there were some differences in terms of the items that were retained. Validity was confirmed with the shortened FSCRS showing the same associations with mood and sex as the original version of the FSCRS. CONCLUSION A three-factor model (RS, IS and HS) provided the best-fitting structure and confirmed the separation of different types of self-criticism. Future research should explore the degree to which these separable aspects of self-criticism are theoretically and clinically meaningful and to identify the role of self-reassurance in ameliorating their effects.

How accurate is the ‘Surprise Question’ at identifying patients at the end of life? A systematic review and meta-analysis

BackgroundClinicians are inaccurate at predicting survival. The ‘Surprise Question’ (SQ) is a screening tool that aims to identify people nearing the end of life. Potentially, its routine use could help identify patients who might benefit from palliative care services. The objective was to assess the accuracy of the SQ by time scale, clinician, and speciality.MethodsSearches were completed on Medline, Embase, CINAHL, AMED, Science Citation Index, Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, Open Grey literature (all from inception to November 2016). Studies were included if they reported the SQ and were written in English. Quality was assessed using the Newcastle–Ottawa Scale.ResultsA total of 26 papers were included in the review, of which 22 reported a complete data set. There were 25,718 predictions of survival made in response to the SQ. The c-statistic of the SQ ranged from 0.512 to 0.822. In the meta-analysis, the pooled accuracy level was 74.8% (95% CI 68.6–80.5). There was a negligible difference in timescale of the SQ. Doctors appeared to be more accurate than nurses at recognising people in the last year of life (c-statistic = 0.735 vs. 0.688), and the SQ seemed more accurate in an oncology setting 76.1% (95% CI 69.7–86.3).ConclusionsThere was a wide degree of accuracy, from poor to reasonable, reported across studies using the SQ. Further work investigating how the SQ could be used alongside other prognostic tools to increase the identification of people who would benefit from palliative care is warranted.Trial registrationPROSPERO CRD42016046564.

Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach

Background: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. Aim: To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.

Context, mechanisms and outcomes in end of life care for people with advanced dementia.

BackgroundThe majority of people with dementia in the UK die in care homes. The quality of end of life care in these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from the perspective of health and social care providers.MethodThe design of the study was qualitative which involved purposive sampling of health care professionals to undertake interactive interviews within a realist framework. Interviews were completed between September 2012 and October 2013 and were thematically analysed and then conceptualised according to context, mechanisms and outcomes. The settings were private care homes and services provided by the National Health Service including memory clinics, mental health and commissioning services in London, United Kingdom. The participants included 14 health and social care professionals including health care assistants, care home managers, commissioners for older adults’ services and nursing staff.ResultsGood palliative care for people with advanced dementia is underpinned by the prioritisation of psychosocial and spiritual care, developing relationships with family carers, addressing physical needs including symptom management and continuous, integrated care provided by a multidisciplinary team. Contextual factors that detract from good end of life care included: an emphasis on financial efficiency over person-centred care; a complex health and social care system, societal and family attitudes towards staff; staff training and experience, governance and bureaucratisation; complexity of dementia; advance care planning and staff characteristics. Mechanisms that influence the quality of end of life care include: level of health care professionals’ confidence, family uncertainty about end of life care, resources for improving end of life care and supporting families, and uncertainty about whether dementia specific palliative care is required.ConclusionsContextual factors regarding the care home environment may be obdurate and tend to negatively impact on the quality of end of life dementia care. Local level mechanisms may be more amenable to improvement. However, systemic changes to the care home environment are necessary to promote consistent, equitable and sustainable high quality end of life dementia care across the UK care home sector.

A protocol for an exploratory phase I mixed-methods study of enhanced integrated care for care home residents with advanced dementia: the Compassion Intervention.

Introduction In the UK approximately 700 000 people are living with, and a third of people aged over 65 will die with, dementia. People with dementia may receive poor quality care towards the end of life. We applied a realist approach and used mixed methods to develop a complex intervention to improve care for people with advanced dementia and their family carers. Consensus on intervention content was achieved using the RAND UCLA appropriateness method and mapped to sociological theories of process and impact. Core components are: (1) facilitation of integrated care, (2) education, training and support, (3) investment from commissioners and care providers. We present the protocol for an exploratory phase I study to implement components 1 and 2 in order to understand how the intervention operates in practice and to assess feasibility and acceptability. Methods and analysis An ‘Interdisciplinary Care Leader (ICL)’ will work within two care homes, alongside staff and associated professionals to facilitate service integration, encourage structured needs assessment, develop the use of personal and advance care plans and support staff training. We will use qualitative and quantitative methods to collect data for a range of outcome and process measures to detect effects on individual residents, family carers, care home staff, the intervention team, the interdisciplinary team and wider systems. Analysis will include descriptive statistics summarising process and care home level data, individual demographic and clinical characteristics and data on symptom burden, clinical events and quality of care. Qualitative data will be explored using thematic analysis. Findings will inform a future phase II trial. Ethics and dissemination Ethical approval was granted (REC reference 14/LO/0370). We shall publish findings at conferences, in peer-reviewed journals, on the Marie Curie Cancer Care website and prepare reports for dissemination by organisations involved with end-of-life care and dementia.

What are the barriers to care integration for those at the advanced stages of dementia living in care homes in the UK? Health care professional perspective.

People with advanced dementia are frequently bed-bound, doubly incontinent and able to speak only a few words. Many reside in care homes and may often have complex needs requiring efficient and timely response by knowledgeable and compassionate staff. The aim of this study is to improve our understanding of health care professionals’ attitudes and knowledge of the barriers to integrated care for people with advanced dementia. In-depth, interactive interviews conducted with 14 health care professionals including commissioners, care home managers, nurses and health care assistants in the UK. Barriers to care for people with advanced dementia are influenced by governmental and societal factors which contribute to challenging environments in care homes, poor morale amongst care staff and a fragmentation of health and social care at the end of life. Quality of care for people with dementia as they approach death may be improved by developing collaborative networks to foster improved relationships between health and social care services.

Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life:

Background: Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care. Aims: To describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia. Design: 9-month prospective cohort study. Setting and participants: Greater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes. Main outcome measures: At study entry and monthly: prescriptions, Charlson Comorbidity Index, pressure sore risk/severity (Waterlow Scale/Stirling Scale, respectively), acute medical events, pain (Pain Assessment in Advanced Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), quality of life (Quality of Life in Late-Stage Dementia Scale), resource use (Resource Utilization in Dementia Questionnaire and Client Services Receipt Inventory), presence/type of advance care plans, interventions, mortality, place of death and comfort (Symptom Management at End of Life in Dementia Scale). Results: Of 159 potential participants, 85 were recruited (62% alive at end of follow-up). Pain (11% at rest, 61% on movement) and significant agitation (54%) were common and persistent. Aspiration, dyspnoea, septicaemia and pneumonia were more frequent in those who died. In total, 76% had ‘do not resuscitate’ statements, less than 40% advance care plans. Most received primary care visits, there was little input from geriatrics or mental health but contact with emergency paramedics was common. Conclusion: People with advanced dementia lived with distressing symptoms. Service provision was not tailored to their needs. Longitudinal multidisciplinary input could optimise symptom control and quality of life.

An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes

BackgroundMost people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice.MethodsAn ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals.ResultsFour major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end–of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions.ConclusionsThe Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.

Affect systems, changes in body mass index, disordered eating and stress: an 18-month longitudinal study in women

ABSTRACT Background: Evidence suggests that stress plays a role in changes in body weight and disordered eating. The present study examined the effect of mood, affect systems (attachment and social rank) and affect regulatory processes (self-criticism, self-reassurance) on the stress process and how this impacts on changes in weight and disordered eating. Methods: A large sample of women participated in a community-based prospective, longitudinal online study in which measures of body mass index (BMI), disordered eating, perceived stress, attachment, social rank, mood and self-criticism/reassurance were measured at 6-monthly intervals over an 18-month period. Results: Latent Growth Curve Modelling showed that BMI increased over 18 months while stress and disordered eating decreased and that these changes were predicted by high baseline levels of these constructs. Independently of this, however, increases in stress predicted a reduction in BMI which was, itself, predicted by baseline levels of self-hatred and unfavourable social comparison. Conclusions: This study adds support to the evidence that stress is important in weight change. In addition, this is the first study to show in a longitudinal design, that social rank and self-criticism (as opposed to self-reassurance) at times of difficulty predict increases in stress and, thus, suggests a role for these constructs in weight regulation.

Implementing the compassion intervention, a model for integrated care for people with advanced dementia towards the end of life in nursing homes: a naturalistic feasibility study

Background Many people with dementia die in nursing homes, but quality of care may be suboptimal. We developed the theory-driven ‘Compassion Intervention’ to enhance end-of-life care in advanced dementia. Objectives To (1) understand how the Intervention operated in nursing homes in different health economies; (2) collect preliminary outcome data and costs of an interdisciplinary care leader (ICL) to facilitate the Intervention; (3) check the Intervention caused no harm. Design A naturalistic feasibility study of Intervention implementation for 6 months. Settings Two nursing homes in northern London, UK. Participants Thirty residents with advanced dementia were assessed of whom nine were recruited for data collection; four of these residents’ family members were interviewed. Twenty-eight nursing home and external healthcare professionals participated in interviews at 7 (n=19), 11 (n=19) and 15 months (n=10). Intervention An ICL led two core Intervention components: (1) integrated, interdisciplinary assessment and care; (2) education and support for paid and family carers. Data collected Process and outcome data were collected. Symptoms were recorded monthly for recruited residents. Semistructured interviews were conducted at 7, 11 and 15 months with nursing home staff and external healthcare professionals and at 7 months with family carers. ICL hours were costed using Department of Health and Health Education England tariffs. Results Contextual differences were identified between sites: nursing home 2 had lower involvement with external healthcare services. Core components were implemented at both sites but multidisciplinary meetings were only established in nursing home 1. The Intervention prompted improvements in advance care planning, pain management and person-centred care; we observed no harm. Six-month ICL costs were £18 255. Conclusions Implementation was feasible to differing degrees across sites, dependent on context. Our data inform future testing to identify the Intervention’s effectiveness in improving end-of-life care in advanced dementia. Trial registration ClinicalTrials.gov:NCT02840318: Results