Exploring the experience of the disclosure of a dementia diagnosis from a clinician,patient and carer perspective: a systematic review and Meta-ethnographic synthesis

Abstract

Objectives: The objective of this review was to identify, appraise and synthesise qualitative research that explores the experience of the disclosure of a dementia diagnosis from the perspectives of clinicians, patients and carers.

Method: A systematic search of four databases, grey literature and reference lists identified 13 studies, which met the required criteria to be included in the review. All were appraised using a quality appraisal tool. Data were extracted and synthesised using a meta-ethnographic approach.

Results: Five key themes were developed from an interpretation of the results: the clinician’s approach; how to tell people the diagnosis is dementia; the importance of the clinician offering hope; level of understanding; and who should attend the disclosure meeting. The process can be improved through a compassionate clinician offering hope, answers to patient and carer questions, and written and/or visual information to support understanding of the diagnosis. These features could be included in guidance to clinicians. There was a large amount of variance in the quality of the studies. Future qualitative research could focus on clinician compassion, giving hope, the management of dynamics within sessions, supporting information and follow-up sessions.

Conclusion: Clinical practice can be informed by a body of literature but there is much work to be done to develop evidence-based detailed guidance for improving the dementia diagnosis experience for all parties, and supporting clinicians to manage inherent tensions in this process. Further research is required on this topic to addresses the shortcomings highlighted in this review.     

Reducing loneliness amongst older people: a systematic search and narrative review

Objective: To investigate the effectiveness of recent social therapeutic interventions to reduce loneliness in older people. Method: To examine this matter, a literature review, using seven databases, was undertaken using search terms relating to the themes of ageing, loneliness and social support. A total of 17 relevant studies relating to loneliness interventions were analysed. Results: Three studies reporting on new technologies and one on a group work intervention identified significant reductions in loneliness.Conclusion: Further research into interventions using new technologies to reduce loneliness in older people is recommended.     

Invitation to a dialogue between researchers and clinicians about evidence-based behavioral medicine

Background: Evidence-based behavioral medicine (EBBM) aims to improve the process through which best scientific research evidence can be obtained and translated into best clinical decisions regarding behavioral treatments to improve health.Purpose: The objective was to examine some legitimate concerns raised by both clinicians and researchers about the evidence-based movement.Methods: This article begins with a discussion of clinicians’ fears that EBBM devalues clinical judgment and the therapist-patient relationship, will be used to restrict practice, is unnecessary, and is based on research that is irrelevant to clinical decision making. Next we consider researchers’ worries that EBBM neglects evidence not based on randomized controlled trials and ignores causal mechanisms.Results: We find that these fears, although understandable, largely reflect misinterpretations of the evidence-based movement. Further, it is suggested that behavioral medicine is in a unique position to enhance the evidence-based movement by encouraging increased attention to treatment mechanisms and to knowledge translation.Conclusions: Clinicians, researchers, and, importantly, the public will benefit from the evidence-based movement by having a health care system that is built on solid grounds of evidence in determining which treatments should constitute the standard of care. A full partnership between clinicians and researchers is called for to generate the practical, rigorous evidence base needed to take behavioral health treatments to the next level of scientific support and implementation. This article was supported by the National Institutes of Health Office of Behavioral and Social Science Research contract NLM 00-158/LTN.     

Conceptualising the social networks of vulnerable children and young people: a systematic review and narrative synthesis

Purpose

The relationship between social networks and health and wellbeing is increasingly demonstrated in vulnerable adult populations. This relationship for vulnerable children and young people has not hitherto been systematically reviewed. This narrative synthesis aims to consolidate research to provide a foundational basis for future health-related social network research and interventions for children and young people.

Methods

This mixed methods systematic review synthesises research investigating whole, egocentric social networks of 32 vulnerable child groups with a mean age below 18. There were no setting, language or date restrictions. The quality was assessed using the Mixed Methods Appraisal Tool. Of 6360 search results, 49 were included for narrative synthesis.

Results

The majority of pertinent research originates from the USA; the most frequently investigated vulnerabilities were minority ethnic status, homelessness and the presence of special educational needs. Research aims and methodologies varied significantly between studies. Key findings included (i) vulnerable (excluding minority ethnic) children and young people have impoverished networks (ii) access to networks is a protective factor against negative outcomes (iii) social ties, primarily immediate family, provide access to personal resources and (iv) network ties are to a degree substitutable.

Conclusions

Networks are associated with wellbeing and vulnerable children and young people commonly have impoverished networks, excluding cases where vulnerability classification relates to minority ethnic status. Network embeddedness is associated with positive outcomes, particularly for homeless children. Family are typically primary providers of support, but ties are substitutable when networks are restricted. Egocentric social network research is currently limited for vulnerable child populations. Further research could inform interventions that harness networks to improve health, wellbeing and functional outcomes for these child groups.

     

Posterior cortical atrophy of a suspected non-Alzheimer type: a case report

Objective: A case of Posterior Cortical Atrophy syndrome of a suspected non-Alzheimer disease pathology type is presented to illustrate prospective diagnosis and course. Method: A 54-year-old woman with vague memory complaints underwent serial neuropsychological assessment, MRI, PET, and CSF screening; data are reviewed. Results: While early diagnosis was confounded by multiple factors, classic visuospatial symptoms were later demonstrated using routine neuropsychological methods. Serial MRI, PET, and CSF screening argued strongly for an alternative underlying pathology to AD. At age 59, her condition had progressed to dementia. Conclusions: Findings underscore the need for further research on suspected non-amyloid-based pathologies.     

Mindfulness in severe and persistent mental illness: a systematic review

Abstract

Objective: This systematic review summarises the current state of research on mindfulness in SPMI, given the pressing need to provide alternative, scalable and cost-effective treatment modalities for patients with severe and persistent mental illness (SPMI).

Methods: Articles included mindfulness-based interventions for SPMI. Excluded articles included qualitative studies, acceptance and compassion therapies, case reports and reviews. Studies were identified by searching the databases Medline, Embase and PsycINFO.

Results: Six randomised controlled trials, seven prospective studies and one retrospective study were identified. Clinical improvements were observed on psychotic symptoms, and on improvements of depression symptoms, cognition, mindfulness, psycho-social and vocational factors.

Conclusions: Findings suggest that mindfulness is feasible for individuals with SPMI, and displays potential benefits in outcomes aside from psychotic symptoms. The effects of mindfulness in psychotic symptoms needs further investigation in larger definitive studies using methodological rigor and thorough assessments of other psychiatric populations who are also representative of SPMI.     

Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice

ABSTRACT

Background: Because the pattern of illnesses changes in an aging population and many people manage to live well with chronic diseases, a group of health care professionals recently proposed reformulating the static WHO definition of health towards a dynamic one based on the ability to physically, mentally and socially adapt and self-manage. This paper is the result of a collaborative action of the INTERDEM Social Health Taskforce to operationalize this new health concept for people with dementia, more specifically the social domain, and to formulate directions for research and practice to promote social health in dementia.

Method: Based on the expertise of the Social Health Taskforce members (N = 54) three groups were formed that worked on operationalizing the three social health dimensions described by Huber et al.: (1) capacity to fulfil potential and obligations; (2) ability to manage life with some degree of independence; (3) participation in social activities. For each dimension also influencing factors, effective interventions and knowledge gaps were inventoried. After a consensus meeting, the operationalizations of the dimensions were reviewed by the European Working Group of People with Dementia (EWGPWD).

Results: The social health dimensions could be well operationalized for people with dementia and are assessed as very relevant according to the Social Health Taskforce and EWGPWD. Personal (e.g. sense of coherence, competencies), disease-related (e.g. severity of cognitive impairments, comorbidity), social (support from network, stigma) and environmental factors (e.g. enabling design, accessibility) that can influence the person with dementia's social health and many interventions promoting social health were identified.

Conclusion: A consensus-based operationalization of social health in dementia is proposed, and factors that can influence, and interventions that improve, social health in dementia identified. Recommendations are made for research and practice.     

Stroke rehabilitation evidence and comorbidity: a systematic scoping review of randomized controlled trials

Background: Most strokes occur in the context of other medical diagnoses. Currently, stroke rehabilitation evidence reviews have not synthesized or presented evidence with a focus on comorbidities and correspondingly may not align with current patient population. The purpose of this review was to determine the extent and nature of randomized controlled trial stroke rehabilitation evidence that included patients with multimorbidity.

Methods: A systematic scoping review was conducted. Electronic databases were searched using a combination of terms related to “stroke” and “rehabilitation.” Selection criteria captured inpatient rehabilitation studies. Methods were modified to account for the amount of literature, classified by study design, and randomized controlled trials (RCTs) were abstracted.

Results: The database search yielded 10771 unique articles. Screening resulted in 428 included RCTs. Three studies explicitly included patients with a comorbid condition. Fifteen percent of articles did not specify additional conditions that were excluded. Impaired cognition was the most commonly excluded condition. Approximately 37% of articles excluded patients who had experienced a previous stroke. Twenty-four percent excluded patients one or more Charlson Index condition, and 83% excluded patients with at least one other medical condition.

Conclusions: This review represents a first attempt to map literature on stroke rehabilitation related to co/multimorbidity and identify gaps in existing research. Existing evidence on stroke rehabilitation often excluded individuals with comorbidities. This is problematic as the evidence that is used to generate clinical guidelines may not match the patient typically seen in practice. The use of alternate research methods are therefore needed for studying the care of individuals with stroke and multimorbidity.     

Childhood adversity and immune and inflammatory biomarkers associated with cardiovascular risk in youth: a systematic review

BackgroundResearch suggests that adverse experiences in childhood affect the development of cardiovascular disease (CVD), and immune and inflammation dysregulation has been postulated to play role. However, it is unclear whether the effects of social adversity on immune-related biomarkers are evident in early life, and if these biomarkers may provide an early risk marker for targeting prevention and intervention. The purpose of this review is to evaluate research on the relationship between adversity and CVD-relevant immune biomarkers in youth, assess the consistency of the findings, and consider what additional research is needed.MethodsPubMed and PsycINFO searches were conducted through September 2011. Studies were selected using criteria related to the childhood exposure, biomarker outcome, age range, and sample selection. Twenty articles were identified, examining associations between childhood adversity and immune biomarkers (assessed during childhood) that are potential risk markers for CVD later in life.ResultsAlthough childhood adversity was not consistently related to youth levels of inflammatory and other immune markers relevant to CVD, a trend toward positive findings was observed. No detectable patterns were evident based on measure of adversity, biomarker, study design, or sample size.ConclusionsOverall, our findings suggest this avenue of research is worth continued investigation. We offer recommendations for future research related to (1) study design and sample, (2) definition and measurement of adversity, (3) statistical analysis, and (4) outcomes that will help distinguish whether there are immunologic alterations related to adversity and subsequent CVD risk that can be reliably detected in childhood.     

Food activities and identity maintenance in old age: a systematic review and meta-synthesis

Objectives: Services provided to older people should be developed based on active ageing policies. Nutrition is one aspect of active ageing, but little is known about how food activities contribute to psychological well-being in later life. This is a systematic review of qualitative and quantitative research that answers the question ‘What is known about the relationship between food activities and the maintenance of identities in old age?’.

Methods: We followed the preferred reporting items for systematic reviews and meta-analyses guidelines and used quality assessment parameters to complete a systematic review and narrative synthesis. Academic Search Premier, MEDLINE, CINAHL Plus, and PsycINFO databases were searched.

Results: We initially identified 8016 articles, of which 167 full-text articles were screened for inclusion. Twenty-two articles were included in the review. There was moderate evidence from nine qualitative and two quantitative studies, of variable quality, that food activities contribute to the maintenance of women's gendered identities, the ethnic identities of men and women, and community identities. There was moderate evidence from 10 qualitative studies, of variable quality, that a change in food choice and deteriorating health changed food activity participation. These changes threatened identities. Most studies included both younger adults and older adults.

Conclusion: In later life, there are many life experiences leading to change. Further research is needed to develop understanding of how identity and mental well-being are maintained, despite changes in everyday activities like cooking and eating. This may enable health care professionals to meet psychological needs alongside biological needs during nutritional interventions.     

Effectiveness of the methadone programme in the treatment of patients on a mephedrone binge and dependent on heroin: a retrospective study, 2010–19

Abstract

Objectives: The purpose of this research was to investigate the effectiveness of the methadone programme in a group of patients taking mephedrone with heroin.

Methods: The research involved 230 people who took part in the methadone programme between 2010 and 2019: 101 people on a mephedrone binge and taking heroin and 129 people addicted to heroin.

Results: Number of re-hospitalisations was higher in a group of patients on a mephedrone binge taking heroin in comparison to heroin dependent patients (91.9 vs 79.8%, p?<?0.01). The interaction of the hepatitis C virus (HCV) infection with the dose of methadone taken explains 67.6% of the variance in the frequency of hospitalisation of the patients on a mephedrone binge (p?<?0.001), and in the case of the dose of methadone alone – only 12% (p?<?0.001). Regression analysis indicated that statistically significant majority of the subjects (p?<?0.001) who received the optimal dose of methadone, namely 100–110?ml, were hospitalised once.

Conclusions: The interaction of the methadone dose with HCV infection plays a very important role in the frequency of hospitalisation of patients taking mephedrone with heroin on a regular basis.

• KEY POINTS

• The number of hospitalisations was higher in a group of patients on a mephedrone binge taking heroin in comparison to heroin dependent patients

• The interaction of the sex of the subjects and HCV infection with the dose of methadone taken explains 80.3 and 67.6% of variance in the frequency of hospitalisations, respectively

• The most optimal dose of methadone in the group of people taking mephedrone with heroin ranges between 100 and 110?ml

     

Research on the alliance: Knowledge in search of a theory

Objectives: The aim of this review paper is to summarize the challenges facing research on the alliance now and going forward. The review begins with a brief overview of the development of the concept of the alliance in historical context. Method: A summary of what has been accomplished both within the psychotherapy research community and in other professions is presented. Current challenges facing this line of research are identified, including the existence of a wide range of operational definitions that results in a diffusion of the identity of the alliance concept. It is argued that the current situation generates risks to incremental growth in several lines of research. Conclusions: A case is made that a lack of clarity regarding how several variables within the broader category of therapeutic relationships fit together, overlap, or complement each other is also potentially problematic. Efforts to resolve the lack of a consensual definition are reviewed, and in conclusion, it is argued that a resumption of a conversation about the relationship in the helping context in general, and the alliance in particular, should be resumed.     

Identifying a subset of fear-evoking pictures from the IAPS on the basis of dimensional and categorical ratings for a German sample

Background and objectivesThe International Affective Picture System (IAPS) is a set of colour photographs depicting a wide range of subject matters. The pictures, which are widely used in research on emotions, are commonly described in terms of the dimensions of valence, arousal and dominance. Little is known, however, about discrete emotions that the pictures evoke. Our aim was to collect dimensional and categorical ratings from a German sample for a subset of IAPS pictures and to identify a set of fear-evoking pictures.Methods191 participants (95 female, 96 male, mean age 23.6 years) rated 298 IAPS pictures regarding valence, arousal and the evoked emotion.Results64 fear-evoking pictures were identified. Sex differences for categorical and dimensional ratings were found for a considerable number of pictures, as well as differences from the US norms.ConclusionsThese differences underscore the necessity of using country-specific and sex-specific norms when selecting stimuli. A detailed table with categorical and dimensional ratings for each picture is provided.     

Associations between characteristics of stroke survivors and caregiver depressive symptoms: a critical review

Background: Poststroke depression is common in stroke survivors. Evidence suggests that caregivers of stroke survivors also experience depression, at rates similar to survivors (30–40%). While much research has focused on developing better understanding of poststroke depression in stroke survivors, stroke caregiver depression has received less attention. Available research suggests that characteristics of the survivor such as age, gender, relation to caregiver, mental health, and physical or cognitive deficits correlate with and may be contributing factors for caregiver depression. Knowledge of risk factors for stroke caregiver depression could translate to better screening, management, and prevention, but further investigation is needed.

Objectives: To examine the existing literature and synthesize evidence surrounding survivor characteristics and their association with poststroke depressive symptoms in caregivers.

Methods: Medline, PsychInfo, and CINAHL databases were searched with variations of keywords: “stroke,” “caregiver” and “depression.” Studies analyzing associations between at least one stroke survivor characteristic and caregiver depressive symptoms were included.

Results: Seventeen studies met eligibility criteria. They analyzed a wide range of survivor characteristics. Many survivor characteristics lacked convincing evidence of an association with caregiver depressive symptoms. However, a trend emerged supporting an association between survivor depressive symptoms and caregiver depressive symptoms.

Conclusions: Health-care providers should be aware that depressive symptoms in one member of a stroke survivor-caregiver dyad may indicate risk for depressive symptoms in the other. Screening both individuals may lead to earlier detection and provide information to guide interventions. Knowing risk factors for stroke caregiver depression may improve prevention/management, but further investigation is needed.     

Global research on cognitive behavioural therapy for schizophrenia from 2000 to 2019: a bibliometric analysis via CiteSpace

BackgroundCognitive behavioural therapy (CBT) is considered to be an effective treatment for schizophrenia. In recent years, researchers have published clinical research results on CBT for schizophrenia. However, there is currently a lack of bibliometric analysis on CBT for schizophrenia.AimsTo understand the current situation and research trends of CBT for schizophrenia, and to provide valuable information for researchers in this field.MethodsLiterature was retrieved from the Web of Science Core Collection database. CiteSpace was used to visually analyse the current status of research on CBT for schizophrenia, as well as trends and points of general interest on this topic.ResultsA total of 1151 papers were retrieved. The annual number of publications has increased 417.65% from 2000 to 2019. Schizophrenia Research was the most active journal. McGorry enjoys considerable influence. The University of London is deemed to be the most active research institution. England and the USA retain the highest scientific productivity in this field. China and Norway might make more contributions to this field in the future. The most important research topics are randomised controlled trials of CBT for schizophrenia, meta-analysis, scale selection and research on the improvement of quality of life. Results from the following keywords ‘psychoeducation’, ‘insomnia’, ‘individual’, ‘mental illness’, ‘major depressive disorder’, ‘efficacy’, ‘internalised stigma’ and ‘remediation’ indicated new research frontiers in this field.ConclusionsThe field of CBT for schizophrenia is progressing and has great potential. The level and quality of research in this field is high. The proposal of research hotspots and frontiers serves as a direction for researchers in this field. Researchers around the world should strengthen their cooperation and communication to promote further development of this field.     

Social support and psychological adjustment among latinas with arthritis: a test of a theoretical model

Background: Among people coping with chronic illness, tangible social support sometimes has unintended negative consequences on the recipient’s psychological health. Identity processes may help explain these effects. Individuals derive selfworth and a sense of competence by enacting social roles that are central to the self-concept.Purpose: This study tested a model drawing from some of these theoretical propositions. The central hypothesis was that tangible support in fulfilling a highly valued role undermines self-esteem and a sense of self-efficacy, which, inturn, affect psychological adjustment.Methods: Structured interviews were conductedwith 98 Latina women with arthritis who rated the homemaker identity as being of central importance to the self-concept.Results: A path analysis indicatedthat, contrary to predictions, tangible housework support was related to less psychological distress. Emotional support predicted greater psychological well-being. These relationships were not mediated by self-esteem or self-efficacy. Qualitative data revealed that half of the sample expressed either ambivalent or negative feelings about receiving housework support.Conclusions: Results may reflect social and cultural norms concerning the types of support that are helpful and appropriate from specific support providers. Future research should consider the cultural meaning and normative context of the support transaction. This study contributes to scarce literatures on the mechanisms that mediate the relationship between social support and adjustment, as well as illness and psychosocial adaptation among Latina women with chronic illness. This research was based on aportion of AnaF. Abraído-Lanza’s dissertation, which was conducted at the City University of New York (CUNY) and supported primarily by a Dissertation Grant from the Minority Fellowship Program of the American Psychological Association, a grant from the Spring Foundation for Contemporary Research on Women, and a CUNY President’s Dissertation Year Award from the MAGNET program. Support for preparing this article was provided by Grant AR46858 from the National Institute of Arthritis and Musculoskeletal and Skin Diseases. Special thanks to Robert J. Lanza, Esq., and to Tracey A. Revenson, Ph.D., who provided invaluable support and feedback on this work. Thanks also to Peter Messeri, Ph.D. for advice concerning statistical power; to Allan Gibofsky, M.D. for facilitating access to the research site; and especially to the research participants who made this study possible.     

Peripheral somatosensory stimulation and postural recovery after stroke – a systematic review

Purpose It is hypothesized that peripheral somatosensory stimulation (PSS) can promote postural recovery after stroke by increasing afferent input and postural contribution of the paretic leg. Therefore, this systematic review aims to investigate which PSS approaches are documented and investigated on effectiveness.

Methods Five databases (PubMed, Web of Science, PEDro, Cochrane Library Trials, RehabData) have been searched on clinical studies in stroke rehabilitation, investigating PSS, which is defined as a non-motor and focal stimulation to the paretic leg aiming an increase in somatosensory input.

Results Twenty studies present different PSS approaches (mainly electrical and vibration stimulation) and following results: (I) There is an immediate effect after a single session of PSS on postural stability. In contrast, (II) repetitive sessions of isolated PSS led to highly inconsistent results. Finally, (III) PSS as an adjuvant to exercises did promote long-term postural recovery.

Conclusion PSS is found to be effective immediately and on a long-term as an adjuvant therapy only in improving postural stability in a chronic stroke population. However, if PSS enhances paretic leg postural contribution remains unclear. Future research is warranted considering promising results and high prevalence of postural instability impacting daily life of stroke survivors.     

Issues in research on aging and suicide

Objective: Late-life suicide is a complex clinical and public health problem.

Method: In this article, some of the key complexities inherent in studying late-life suicide are discussed in the service of promoting high-quality late-life suicide prevention science.

Results: We discuss the following research issues: the relatively greater lethality of suicidal behavior in later life (compared to younger ages); the lack of data on whether thoughts of death in later life are indicators of suicide risk; the fact that older adults do not tend to seek specialty mental health care, necessitating moving research into primary care clinics and the community; the lack of theory-based research in late-life suicide; the unclear role of cognitive impairment; and the promise of taking a ‘patient centered’ and ‘participatory research’ approach to late-life suicide research efforts.

Conclusion: We believe that these perspectives are too often not capitalized upon in research on suicide prevention with older adults and that voice of the older person could contribute much to our understanding of why older adults think about and act on suicidal thoughts, as well as the most acceptable ways to reach and intervene with those at risk.     

Vaccines and myasthenia gravis: a comprehensive review and retrospective study of SARS-CoV-2 vaccination in a large cohort of myasthenic patients

Introduction

Myasthenia gravis (MG) is an autoimmune disease, for which the risk of exacerbation after vaccines is debated. The aim of this study is to review the available literature concerning safety and efficacy of vaccines in MG. In addition, we also conducted a retrospective research of MG exacerbations and new onset MG after anti-SARS-CoV-2 vaccination in a large cohort of patients.

Methods

A study of the available literature regarding vaccines and MG was carried out through research in the online database “Pubmed”. We also retrospectively collected data from 80 MG patients, who were followed at the Treviso Hospital and completed an anti-SARS-CoV-2 vaccination cycle. For each patient, we recorded MG exacerbations between first and second doses and within a window period of 1 day – 6 weeks after the second dose.

Results

We found 26 relevant articles about influenza, SARS-CoV-2 and other vaccines. No clear associations between most vaccines and MG exacerbations were found. Moreover, cases of new onset post-vaccine MG are mostly anecdotal, except for Japanese encephalitis virus vaccine. Concerning our cohort, 4/80 (5%) MG patients experienced an exacerbation within the post-vaccine window period. In addition, we report a case of new onset post-vaccine MG.

Discussion

Inactivated and subunit vaccines are safe and effective in MG. Although some of them, such as anti-SARS-CoV-2 vaccine, might uncommonly cause MG exacerbations, data from our review suggest that benefits still outweigh by far the potential risks, thus they should be recommended to these patients. Nevertheless, large prospective studies are needed for further investigations.