scholarly journals Adapting the eHealth Literacy Scale for Carers of People With Chronic Diseases (eHeals-Carer) in a Sample of Greek and Cypriot Carers of People With Dementia: Reliability and Validation Study (Preprint)

2018 ◽  
Author(s):  
Areti Efthymiou ◽  
Nicos Middleton ◽  
Andreas Charalambous ◽  
Evridiki Papastavrou
Keyword(s):  
Chronic Diseases ◽  
Internal Consistency ◽  
Content Validity ◽  
Karolinska Institute ◽  
Term Care ◽  
Web Based ◽  
Ehealth Literacy ◽  
People With Dementia ◽  
At Home

BACKGROUND As the population ages, many more people will be in need of long-term care. According to a recent report by Alzheimer's Disease International and the Karolinska Institute, 84% of people with dementia are cared for at home and 16% in nursing homes. Several Web-based interventions have been developed to assist the work of carers at home. Measuring the levels of electronic health (eHealth) literacy is of top priority to facilitate inclusion of this population and develop training programs to enhance eHealth literacy skills. OBJECTIVE This study aimed to adapt the eHealth Literacy Scale (eHeals) for carers of people with dementia, who speak Greek as their native language and live in Greece and Cyprus, and to test the reliability and validity of the scale for carers. METHODS The content validity of the eHealth Literacy Scale for Carers of People With Chronic Diseases (eHeals-Carer) was assessed with an expert panel (N=10). A descriptive study with face-to-face interviews among 101 primary carers of people with dementia was conducted. In addition to the eHeals-Carer to assess their perceived eHealth literacy, participants responded to a brief questionnaire regarding characteristics of internet use and provided sociodemographic data. The internal consistency of the tool and the construct validity via an exploratory factor analysis (EFA) were explored. RESULTS The Mean Item-Level Content Validity Index (CVI) and Scale-Level CVI Average was 0.93. The participants were mostly women (75.2%, 76/101), aged less than 60 years (67.3%, 68/101) with secondary education. The internal consistency was estimated at a Cronbach alpha of .83. Two factors were extracted from the EFA: information seeking questions 1 to 5 (factor 1) and evaluation questions 6 to 8 (factor 2). CONCLUSIONS eHeals-Carer is the first perceived eHealth literacy tool adapted for carers of people with dementia. The use of Web-based services available for carers could help them and improve the health care system in the long term. In Greece and Cyprus, there is a lack of services, and improving the digital skills of carers could provide them with the means to support themselves at home and improve care provision. INTERNATIONAL REGISTERED REPORT RR2-10.2196/resprot.8080

scholarly journals Adapting the eHealth Literacy Scale for Carers of People With Chronic Diseases (eHeals-Carer) in a Sample of Greek and Cypriot Carers of People With Dementia: Reliability and Validation Study

10.2196/12504 ◽  
2019 ◽  
Vol 21 (11) ◽  
pp. e12504 ◽  
Author(s):  
Areti Efthymiou ◽  
Nicos Middleton ◽  
Andreas Charalambous ◽  
Evridiki Papastavrou
Keyword(s):  
Chronic Diseases ◽  
Internal Consistency ◽  
Content Validity ◽  
Karolinska Institute ◽  
Term Care ◽  
Web Based ◽  
Ehealth Literacy ◽  
People With Dementia ◽  
At Home

Background As the population ages, many more people will be in need of long-term care. According to a recent report by Alzheimer's Disease International and the Karolinska Institute, 84% of people with dementia are cared for at home and 16% in nursing homes. Several Web-based interventions have been developed to assist the work of carers at home. Measuring the levels of electronic health (eHealth) literacy is of top priority to facilitate inclusion of this population and develop training programs to enhance eHealth literacy skills. Objective This study aimed to adapt the eHealth Literacy Scale (eHeals) for carers of people with dementia, who speak Greek as their native language and live in Greece and Cyprus, and to test the reliability and validity of the scale for carers. Methods The content validity of the eHealth Literacy Scale for Carers of People With Chronic Diseases (eHeals-Carer) was assessed with an expert panel (N=10). A descriptive study with face-to-face interviews among 101 primary carers of people with dementia was conducted. In addition to the eHeals-Carer to assess their perceived eHealth literacy, participants responded to a brief questionnaire regarding characteristics of internet use and provided sociodemographic data. The internal consistency of the tool and the construct validity via an exploratory factor analysis (EFA) were explored. Results The Mean Item-Level Content Validity Index (CVI) and Scale-Level CVI Average was 0.93. The participants were mostly women (75.2%, 76/101), aged less than 60 years (67.3%, 68/101) with secondary education. The internal consistency was estimated at a Cronbach alpha of .83. Two factors were extracted from the EFA: information seeking questions 1 to 5 (factor 1) and evaluation questions 6 to 8 (factor 2). Conclusions eHeals-Carer is the first perceived eHealth literacy tool adapted for carers of people with dementia. The use of Web-based services available for carers could help them and improve the health care system in the long term. In Greece and Cyprus, there is a lack of services, and improving the digital skills of carers could provide them with the means to support themselves at home and improve care provision. International Registered Report Identifier (IRRID) RR2-10.2196/resprot.8080

scholarly journals An individualised, non-pharmacological treatment strategy associated with an improvement in neuropsychiatric symptoms in a man with dementia living at home

2019 ◽  
Vol 12 (5) ◽  
pp. e229048 ◽  
Author(s):  
Mark McLean Carter ◽  
Angelina Wei ◽  
Xinlei Li
Keyword(s):  
Neuropsychiatric Symptoms ◽  
Emergency Department Visits ◽  
Pharmacological Interventions ◽  
First Line ◽  
Term Care ◽  
People With Dementia ◽  
Care Facilities ◽  
At Home

More than 90% of people with dementia experience neuropsychiatric symptoms which are often distressing and can result in early institutionalisation, diminished quality of life, increased frequency of emergency department visits along with stress and ill-health in caregivers. Non-pharmacological interventions are recommended as first-line treatment for neuropsychiatric symptoms, instead of medications such as atypical antipsychotics which have significant side effects. Most systematic reviews of non-pharmacological interventions for neuropsychiatric symptoms of dementia focus on patients in long-term care facilities and there are a limited number of research studies assessing the use of non-pharmacological interventions for patient’s living at home. In this case report, we discuss an elderly man with dementia whose cognitive symptoms were accompanied by significant neuropsychiatric symptoms of suspicion, delusions, agitation and aggression. We describe how a programme of individualised, non-pharmacological interventions was associated with an improvement in neuropsychiatric symptoms within 3 months.

scholarly journals 553 - A promising Dutch initiative for highly intelligent seniors affected by dementia: a qualitative evaluation of Studiegroepen day time activities in long term care

2021 ◽  
Vol 33 (S1) ◽  
pp. 94-94
Author(s):  
Ruslan Leontjevas ◽  
Monique Luyendijk ◽  
Rico Kremer ◽  
Debby L. Gerritsen
Keyword(s):  
Long Term Care ◽  
Informal Caregivers ◽  
Barriers And Facilitators ◽  
Structured Interviews ◽  
Term Care ◽  
Highly Educated ◽  
Positive Effects ◽  
People With Dementia ◽  
At Home

Background:Long term care organisations in the Netherlands organize day time activities for people with dementia who receive care at home to prevent burden of informal caregivers. Clients with dementia that are characterised as highly educated and/or highly intelligent often refuse to participate in such activities. Boredom, a lack of association with and unwillingness to mix with other participants are often reported. In 2006, the spiritual counselling department of long term care organisation Respect, The Hague, started with Studiegroepen (pronounced ‘studee-groo-pen’, study groups). This initiative provides adjusted leisure activities and group conversations about present-day topics and shared life experiences.Existential philosophical themes form the basis for discussions. Although Studiegroepen seems very successful and there are long waiting lists, the program is barely studied and is unknown in other organisations.Aims:(1) to explore the opinions of the participants, their informal caregivers (mainly partners), and spiritual counsellors about Studiegroepen and the way the program meets the participants needs for autonomy, competence and relatedness (Self Determination Theory); (2) for the development of implementation material for other organisations, the aim was to reveal specific components of the program and to explore their barriers and facilitators.Results:A thematic analysis in Atlas.ti of semi-structured interviews with 15 clients, eight informal caregivers and four spiritual counsellors revealed extremely positive evaluations. There were strong indications that the program meets clients’ needs for autonomy, competence and relatedness. A striking example of a positive evaluation was a cancellation of relocation of a client-partner couple due to the lack of Studiegroepen in that city. Results suggest positive effects on mood, and quality of life. Several informal caregivers perceived a delay in dementia progression. The research revealed specific program components and barriers and facilitators to implement them.Conclusions:Studiegroepen is a very positively evaluated initiative for highly educated and/or highly intelligent long time care clients with dementia living at home. This initiative should be systematically studied and described, while implementation material needs to be developed. This may help to introduce the program in other organisations and to further explore effects on outcomes in participants, and in informal caregivers.

Validity Testing and cultural adaptation of the eHealth Literacy Questionnaire (eHLQ) among people with chronic disease in Taiwan: A mixed-methods study (Preprint)

2021 ◽  
Author(s):  
Yu-Chi Chen ◽  
Christina Cheng ◽  
Richard H Osborne ◽  
Lars Kayser ◽  
Chieh-Yu Liu ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
Chronic Diseases ◽  
Internal Consistency ◽  
Cultural Adaptation ◽  
Content Validity ◽  
Digital Health ◽  
Test Theory ◽  
Measurement Properties ◽  
Validity Testing ◽  
Ehealth Literacy

BACKGROUND Advancements in digital technologies seek to promote health and access to services. However, people lacking abilities and confidence to use technology are likely to be left behind, leading to health disparities. In providing digital health services, health care providers need to be aware of users diverse electronic health (eHealth) literacy to address particular needs and ensure equitable uptake and use of digital services. To understand such needs, an instrument that captures user’s knowledge, skills, trust, motivation and experiences in relation to technology is required. The eHealth Literacy Questionnaire (eHLQ) is a multi-dimensional tool with 7 scales covering diverse dimensions of eHealth literacy. The tool was simultaneously developed in English and Danish using a grounded and validity-driven approach and was shown to have strong psychometric properties. OBJECTIVE This study aimed to translate and culturally adapt the eHLQ for application among Chinese-speaking people with chronic diseases in Taiwan, and then undertake a rigorous set of validity testing procedures. METHODS The cross-cultural adaptation of the eHLQ included translation and evaluation of the translations. The measurement properties were assessed using classical test theory and Item Response Theory (IRT) approaches. Content validity, known groups validity and internal consistency were explored, as well as item characteristic curves (ICCs), item discrimination and item location/difficulty. RESULTS The adapted version was reviewed and a recommended forward translation was confirmed through consensus meetings. The tool exhibited good content validity. A total of 420 people with one or more chronic diseases participated in a validity testing survey. The eHLQ showed good internal consistency (Cronbach’s α .75 ~.95). For known groups validity, all 7 eHLQ scales showed strong expected associations with education. Unidimensionality and local independence assumptions were met, except for Scale 2. IRT analysis showed that all items demonstrated good discrimination and a good range of difficulty, except for 2 items in Scale 7. CONCLUSIONS Using a rigorous process, the eHLQ was translated from English into a culturally appropriate tool for use in the Chinese language. Validity testing provided evidence of satisfactory to strong psychometric properties of the eHLQ. The 7 scales are likely to be useful research tools for evaluating digital health interventions and for informing the development of health technology products and interventions that equitably suit diverse users’ needs. CLINICALTRIAL Inapplicable This study was not a clinical trial.

scholarly journals at home” for people with dementia in care environments.

2021 ◽  
Vol 14 (27) ◽  
pp. 133-142
Author(s):  
Jing Chen ◽  
Silvia Maria Gramegna ◽  
Alessandro Biamonti
Keyword(s):  
Built Environment ◽  
Future Research ◽  
Design Strategies ◽  
Term Care ◽  
Research Through Design ◽  
People With Dementia ◽  
Scientific Epistemology ◽  
Feeling At Home ◽  
At Home

This review summarises the challenges of applying evidence that built environment factors contribute to people with dementia feeling at home in long-term care institutions. Eighteen reviewed publications are classified into research-focused and practice-focused study. Research-focused studies from scientific epistemology focus on physical environment aspects that influence residents feeling at home in the care institution. Design-focused studies develop specific design strategies based on evidence from research-focused studies. However, there are limitations in transforming research evidence into design practice due to a mismatched knowledge foundation. Future research should consider standing on design epistemology to gain new insights which reflect built environment contributions to the sense of home for people with dementia living in care institutions by Research through Design approach.

Nursing staff needs in providing palliative care for people with dementia at home or in long-term care facilities: A scoping review

2019 ◽  
Vol 96 ◽  
pp. 143-152 ◽  
Author(s):  
Sascha R. Bolt ◽  
Jenny T. van der Steen ◽  
Jos M.G.A. Schols ◽  
Sandra M.G. Zwakhalen ◽  
Sabine Pieters ◽  
...  
Keyword(s):  
Palliative Care ◽  
Nursing Staff ◽  
Scoping Review ◽  
Long Term Care ◽  
Term Care ◽  
People With Dementia ◽  
Care Facilities ◽  
At Home

scholarly journals Confirmatory analysis of a health state classification system for people living with dementia: a qualitative approach

2019 ◽  
Vol 24 (4) ◽  
pp. 256-265 ◽  
Author(s):  
Alyssa Welch ◽  
Nguyen Kim-Huong ◽  
John Quinn ◽  
Caroline Gregory ◽  
Wendy Moyle ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Alzheimer’S Disease ◽  
Focus Groups ◽  
Content Validity ◽  
Long Term Care ◽  
Community Members ◽  
Term Care ◽  
People With Dementia

Objectives This paper aims to confirm the content validity of the domains identified during the development of the Alzheimer’s disease – five dimensions (AD-5D) algorithm for the quality of life – Alzheimer’s disease (QOL-AD) and to identify the rationale for stated quality of life preferences. Methods Focus groups were conducted to elicit the priorities for quality of life in dementia from three perspectives: the person with dementia; family caregivers; and the community. Participants were recruited through industry research partners (long-term care providers) based on knowledge of their experience with dementia. Three focus groups were conducted – one each in Brisbane, Sydney and Adelaide, Australia – between November 2016 and February 2017. Each focus group included participants providing a different perspective on dementia – people with dementia ( n = 3), caregivers ( n = 9) and general community members or relatives of residents of a long-term care facility ( n = 10), although some groups contained one participant with a different perspective. The focus groups were used to validate the AD-5D domains and examine quality of life preferences across the three perspectives. Thematic analysis was used to identify the priorities underlying preference selection. Results All activities affecting the quality of life for people with dementia could be mapped to one of the five AD-5D domains: memory, mood, physical health, living situation and ability to do things for fun. The domains considered most important for quality of life differed between people with dementia, their caregivers and members of the community, with memory the least important domain for all three groups. The rationale for priorities also varied between groups. Conclusions This study confirmed the content validity of the selection of the AD-5D domains and identified multiple differences in the reasons behind stated priorities for quality of life for people with dementia, their caregivers and community members.

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