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Protocol for a scoping review on information needs and information-seeking behaviour of people with dementia and their non-professional caregivers.

ABSTRACT: BACKGROUND:Dementia is a debilitating disease that can lead to major changes in a patient's behaviour and function. It is important to educate both patients with dementia and their non-professional caregivers about the disease. Yet, currently available sources do not seem to be effective for patients and caregivers, who report a need for more information and guidance. A systematic identification of the patients' and caregivers' needs for information and information-seeking behaviour is needed to create information resources that are relevant and beneficial to the target population. OBJECTIVES:This is a protocol for a scoping review aimed at gathering knowledge on the information needs and information-seeking behaviour of patients with dementia and their non-professional caregivers. Our aim was also to provide recommendations for development of future dementia information resources. METHODS:The study will commence in November 2018. Both quantitative and qualitative studies on the information needs of patients with dementia or caregivers will be examined using Arksey and O'Malley's methodological framework for scoping studies. A comprehensive literature search will be conducted in electronic databases and grey literature sources. We will also screen reference lists of included studies and related systematic reviews for additional eligible studies. Two authors will perform screening of citations for eligibility and independently extract data from the included studies in parallel. Any discrepancies will be resolved through discussion. The findings will be presented through a narrative synthesis and reported in line with PreferredReporting Items for Systematic Reviews and Meta-Analyses reporting guidelines. ETHICS AND DISSEMINATION:In this review, all included data will originate from published literature. Ethics approval is therefore not a requirement. We will present our findings at relevant conferences and will submit them for publication in peer-reviewed journals.

SUBMITTER: Au ST

PROVIDER: S-EPMC7008419 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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Protocol for a scoping review on information needs and information-seeking behaviour of people with dementia and their non-professional caregivers.

Au Shu Ting ST Soong Aijia A Kyaw Bhone Myint BM Tudor Car Lorainne L

BMJ open 20191203 12

<h4>Background</h4>Dementia is a debilitating disease that can lead to major changes in a patient's behaviour and function. It is important to educate both patients with dementia and their non-professional caregivers about the disease. Yet, currently available sources do not seem to be effective for patients and caregivers, who report a need for more information and guidance. A systematic identification of the patients' and caregivers' needs for information and information-seeking behaviour is n ...[more]

PMID: 31801743

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Project description:BACKGROUND:People with dementia often require full-time caregivers especially in the later stages of their condition. People with dementia and caregivers' access to reliable information on dementia is essential as it may have an important impact on patient care and quality of life. This study aims to provide an overview of the information needs and information seeking behaviour of people with dementia and their non-professional caregivers. METHODS:We conducted a scoping review of the literature and searched four electronic databases for eligible studies published up to August 2018. Two reviewers independently screened studies and extracted data. Information needs were classified according to emerging themes in the literature, and information seeking behaviour was categorized using Wilson's model of information behaviour. RESULTS:Twenty studies with a total of 4140 participants, were included in this review. Reported information needs focused on: (i) disease; (ii) patient care provision; (iii) healthcare services; and (iv) caregiver self-care. The most commonly reported information need was on healthcare service-related information. Characteristics found to influence information needs were the severity of dementia as well as patient and caregiver status. People with dementia and non-professional caregivers mainly displayed active searching, information seeking behaviour and preferred using electronic sources to obtain health information. CONCLUSION:Current dementia information sources available in English are extensive in the information they offer, but more emphasis needs to be placed on healthcare service-related information. All studies originated from high income countries and focused on information needs of non-professional caregivers only. The only variables found to be associated to information needs were severity of dementia condition as well as patient/caregiver status. The information needs identified in this review can be used to inform development and design of future dementia resources for people with dementia and their non-professional caregivers.

Project description:BackgroundPrevious studies have identified substantial unmet information needs in people with depression and anxiety. Sufficient information about the disorder, treatment, available services, and strategies for self-management is essential as it may influence quality of care and patients' quality of life. This scoping review aimed to provide a broad overview of information needs of people with depression and anxiety as well as the sources that they use to seek this information.MethodsWe included all primary research published in English that investigated information needs or information sources in people with depression or anxiety, with no restrictions imposed on the study design, location, setting, or participant characteristics. Six electronic databases (MEDLINE, Embase, PsycINFO, CINAHL, LISTA, Web of Science) and the grey literature (Google and Google Scholar) were searched for relevant studies published up to November 2021. Two reviewers independently screened articles and extracted data. Narrative synthesis was performed to identify key themes of information needs and information sources. Factors associated with information needs/sources such as demographic variables and symptom severity were also identified.ResultsFifty-six studies (comprising 8320 participants) were included. Information needs were categorised into seven themes, including general facts, treatment, lived experience, healthcare services, coping, financial/legal, and other information. The most frequently reported needs in both people with depression and anxiety were general facts and treatment information. Subclinical samples who self-reported depressive/anxious symptoms appeared less interested in treatment information than patients with clinical diagnoses. Information sources were summarised into five categories: health professionals, written materials, media, interpersonal interactions, and organisational resources. Health professionals and media (including the internet) were the most frequently adopted and preferred sources. Although few studies have examined factors associated with information needs and information sources, there is preliminary evidence that symptom severity and disease subtypes are related to information needs/sources, whereas findings on demographic factors were mixed.ConclusionsInformation needs appear to be high in people with depression and anxiety. Future research should examine differences between subgroups and associated factors such as the treatment course. Personalised information provision strategies are also needed to customise information according to individual needs and patient profiles.Trial registrationThe protocol of this scoping review was registered on Open Science Framework (OSF; link: https://doi.org/10.17605/OSF.IO/DF2M6 ).

Project description:BackgroundDementia is an important health and social care problem and is one of the main causes of disability in later life. The number of families affected by dementia will dramatically increase over the next five decades. Despite the implications for health and social care services in the future, the overwhelming majority of care for people with dementia takes place away from health care settings. Providing informal care for someone with dementia can be psychologically, physically and financially expensive and a range of health service interventions aimed at supporting and providing information to these carers has developed to help carers meet these demands. This review examines whether information and support interventions improve the quality of life of people caring for someone with dementia.MethodsA systematic review examining evidence from randomised controlled trials in which technology, individualised or group-based interventions built around the provision of support and/or information were evaluated.ResultsForty-four studies were included in the review. Controlling for the quality of the evidence, we found statistically significant evidence that group-based supportive interventions impact positively on psychological morbidity. However, whilst the improvement was unlikely to be due to chance, the clinical significance of this finding should be interpreted tentatively, due to the difficulties in interpreting the standardised mean difference as a measure of effect and the complex aetiology of depression. No evidence was found for the effectiveness of any other form of intervention on a range of physical and psychological health outcomes.ConclusionThere is little evidence that interventions aimed at supporting and/or providing information to carers of people with dementia are uniformly effective. There is a pressing need to ensure that supportive interventions at the development stage are accompanied by good quality randomised evaluations in which outcomes that are important to clinicians and carers are measured.

Project description:BackgroundThis paper describes both the use of and needs for informal caregivers of people with dementia, based on a questionnaire survey organized within the National Dementia Programme in the Netherlands. The National Dementia Programme is a quality collaborative of the Dutch Alzheimer's Association, the Institute of Quality of Healthcare (CBO) and the Knowledge Centre on Ageing (Vilans), instigated by the Ministry of Health, Welfare and Sport, to improve integrated care for people with dementia and their informal caregivers. The support needs of informal caregivers are important to improve caregiver well-being and delaying institutionalization of the person with dementia.MethodsIn the period April 2006 - January 2007, the National Dementia Programme questionnaire was completed by 984 informal caregivers. Descriptive statistics were used to analyze the use of and needs for additional professional support by informal caregivers. Chi-square tests were used to assess the relationships between characteristics of the caregivers (spouses, sons/daughters, sons/daughters in-law) and support needs on one hand and to assess the relationship between the living situation of the person with dementia (living at home or living in a nursing home or home for the elderly) and support needs on the other hand.ResultsAlmost all informal caregivers (92.6%) received some professional support. However, two thirds (67.4%) indicated they had one or more needs for additional professional support. Informal caregivers often need additional professional advice about what to do when their relative is frightened, angry of confused. Spouses reported different needs than sons or daughters (in-law): spouses relatively often need emotional support and sons or daughters (in-law) more often need information and coordination of dementia care.ConclusionsMost of the informal caregivers report that they need additional information and advice, e.g. about how to cope with behavioral problems of their relative, about the progression of the illness trajectory, emotional support and coordination of dementia care. Future support programmes, e.g. in the field of case management, should address the specific needs of informal caregivers.

Project description:BACKGROUND:People with dementia (PwD) vary in the degree of awareness they show about their situation, both generally concerning the diagnosis and more specifically around certain aspects or objects of awareness such as awareness of memory impairment, altered daily activities or social functioning. The extent of awareness or lack of awareness has consequences for well-being of PwD and carers, impacting on rates of hospital admission, institutionalization, mood, adjustment to diagnosis, outcomes from intervention and carer burden. An accurate estimation of a person's awareness could therefore be useful in a clinical setting to support PwD and their carers in making appropriate choices for health and care decisions, and could facilitate safe management by health care professionals, e.g. in an acute care setting. There is a range of different approaches to measuring awareness reported in the dementia research literature, with varying estimates of the frequency of lack of awareness, reflecting different methodologies and populations. The majority of the methods have been developed for research purposes and may not be suitable for clinical use. There are no recent scoping or systematic reviews of the available methods. METHOD:We will conduct a scoping review of published studies that have assessed awareness in people with dementia of all types, and all degrees of severity. The systematic search will include the electronic databases PubMed, Embase, PsycInfo, CINAHL, Web of Science and Cochrane Library, using search terms for dementia ("dement*" or "Alzheimer*" or "Pick's disease") and "awareness", "unawareness", "anosognosia", "insight", "denial", "metacognit*" or "discrepanc*" identified from pilot searches. Findings will be mapped and described according to the method used, the setting and diagnosis and the object of awareness studied if specified. Validated measures will be identified. DISCUSSION:This scoping review will provide an overview of the methods used to measure awareness in people with dementia, allowing comparison of the methods along with identification of validated measures. The methods or components will be appraised for potential clinical use, and gaps in research will be highlighted.

Project description:IntroductionAgeing in place, supported by formal home and community services and informal caregivers, is the most used long-term care option for people with dementia (PwD). Informal caregivers are inundated by their caregiving responsibilities and resultantly suffer consequences. Despite the multitude of clinical effectiveness studies on interventions that support informal caregivers, there is a paucity of information regarding their implementation process. This scoping review aims to identify the implementation strategies, implementation outcomes, and barriers and facilitators that impede or support the dissemination and uptake of interventions that support informal caregivers of PwD at home.Methods and analysisThis protocol is guided by the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) Protocols, and the scoping review will follow the systematic steps of the PRISMA-Extension for Scoping Reviews guideline. The search strategy will include publications produced from inception to 8 March 2021 and will be conducted in the search engines Embase, Medline (Ovid), Web of Science and Cochrane Central Register of Controlled Trials (Wiley), followed by a three-stage approach. First, title and abstracts will be screened by two independent reviewers. Second, full-text articles will also be screened by both reviewers and, in case of disagreement, by a third reviewer. The first two stages are based on a set of inclusion and exclusion criteria. Reference lists of the final included studies will also be checked for relevant articles. Data from the final included studies will be extracted and synthesised using the Expert Recommendations for Implementing Change compilation and Proctor's implementation outcomes to ensure homogenous and standardised reporting of implementation information.Ethics and disseminationThe review findings will be published in a peer-reviewed journal and disseminated at geriatric and implementation conferences to inform researchers, health service planners and practice professionals with an overview of the existing literature to guide them in the effective implementation of caregiver-focused interventions in dementia support.

Project description:BackgroundPeople with dementia are most at risk of experiencing serious health related suffering, if they do not have a palliative care approach introduced early enough in the illness. It can be challenging for nurses to assess experienced needs of people, who are thought no longer able to self-report such as people with dementia. Assessment help to understand the care the patient and their family need promptly. It is unknown how nurses recognise holistic palliative care needs in people with dementia during routine care.MethodsScoping review where EMBASE, MEDLINE, CINAHL, PsycInfo databases, and references were searched with an advanced search strategy, which was built on three concepts (nurses, dementia, and nursing assessment) using corresponding Medical Subject Headings. Data were charted in a piloted extraction form, based on the assessment domains within the nursing process followed by summarise and synthesise results narratively.Results37 out of 2,028 qualitative and quantitative articles published between 2000 and 2021, and relating to 2600 + nurses, were identified. Pain was sole focus of assessment in 29 articles, leaving 8 articles to describe assessment of additional needs (e.g., discomfort). Nurses working in a nursing home assess pain and other needs by observing the persons with dementia behaviour during routine care. Nurses in the acute care setting are more likely to assess symptoms with standard assessment tools at admission and evaluate symptoms by observational methods. Across settings, about one third of pain assessments are supported by person-centred pain assessment tools. Assessments were mostly triggered when the person with dementia vocalised discomfort or a change in usual behaviour was observed. Nurses rely on family members and colleagues to gain more information about needs experienced by people with dementia.ConclusionThere is a scarcity of evidence about techniques and methods used by nurses to assess needs other than pain experienced by people with dementia. A holistic, person-centred screening tool to aid real-time observations at the bedside and used in conversations with health care professionals and families/friends, may improve need recognition other than pain, to ensure holistic needs could then be addressed timely to improve care in people with dementia.

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Protocol for a scoping review on information needs and information-seeking behaviour of people with dementia and their non-professional caregivers.

Publications

Protocol for a scoping review on information needs and information-seeking behaviour of people with dementia and their non-professional caregivers.

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