Dataset Information

Barriers to using eHealth/mHealth platforms and perceived beneficial eHealth/mHealth platform features among informal carers of persons living with dementia: a qualitative study.

ABSTRACT:

Background

New technologies have brought about a new age of technology-enabled aids that can equip informal carers with the relevant resources for better care. These include but are not limited to facilitating access to healthcare providers, knowledge of caring for persons living with dementia, and sources of support for carers' well-being. This qualitative study explores barriers to using eHealth/mHealth platforms and perceived beneficial eHealth/mHealth platform features among informal carers of persons living with dementia.

Methods

An exploratory qualitative study design was employed. Semi-structured interviews were conducted among 29 informal carers of persons living with dementia in Singapore recruited via convenience and snowball sampling. The interviews were audio-recorded and transcribed verbatim. Thematic analysis was used to analyse the data.

Results

The participants in this study identified several barriers to using eHealth/mHealth platforms, including personal preference, apprehension, poor user experience and lack of skills. On the other hand, knowledge of dementia, caring for persons living with dementia and self-care, a list of resources, social support, location monitoring and alert systems, and the ability to manage appointments and transactions were valuable features for eHealth/mHealth platforms.

Conclusions

Despite the underutilisation of eHealth/mHealth platforms, carers expressed a keen interest in using them if they are functional and capable of reducing their care burden. The findings from this study can contribute to developing content and features for eHealth/mHealth interventions aimed at lightening carers' burden in their day-to-day caring routine.

SUBMITTER: Samari E

PROVIDER: S-EPMC10771641 | biostudies-literature | 2024 Jan

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Barriers to using eHealth/mHealth platforms and perceived beneficial eHealth/mHealth platform features among informal carers of persons living with dementia: a qualitative study.

Samari Ellaisha E Yuan Qi Q Zhang YunJue Y Jeyagurunathan Anitha A Subramaniam Mythily M

BMC geriatrics 20240106 1

<h4>Background</h4>New technologies have brought about a new age of technology-enabled aids that can equip informal carers with the relevant resources for better care. These include but are not limited to facilitating access to healthcare providers, knowledge of caring for persons living with dementia, and sources of support for carers' well-being. This qualitative study explores barriers to using eHealth/mHealth platforms and perceived beneficial eHealth/mHealth platform features among informal ...[more]

PMID: 38184551

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Project description:BackgroundThe prevalence of dementia is increasing, and there are many associated problems that family members face as informal carers, including emotional, physical, and financial difficulties. There are benefits for a person with dementia to live at home for as long as possible, and therefore, supporting their informal carers is crucial. The growing interest in supporting carers through internet-based interventions is evidenced by the volume of systematic reviews on this topic. It is now appropriate to systematically examine this body of work and provide an overview of the literature.ObjectiveThis umbrella review aimed to identify the most effective internet-based intervention content and delivery method to support those caring for someone with dementia living in the community.MethodsPsycINFO, Web of Science, CINAHL, MEDLINE, Cochrane Library, and PubMed were searched for systematic reviews examining the effectiveness of web-based interventions for informal carers of people with dementia. A total of 3 reviewers extracted data and evaluated the quality of the papers. To ascertain the extent to which the systematic reviews reported on the same evidence, the proportion of overlap between their included studies was calculated. Qualitative research findings were extracted and reported.ResultsA total of 21 papers were included in the study. The quality of the review papers was mainly rated as low to moderate, and 10% (2/21) of papers were of high quality. The findings suggest that multicomponent interventions were the most effective in supporting carers. These included combinations of cognitive behavioral therapy and relaxation strategies, educational resources, and online support groups. Interventions that were delivered on the web but included sessions with a personal element, such as telephone contact, showed the best results. When comparing the studies reviewed in all the review papers, a moderate overlap was noted. However, when comparing individual reviews with each other, they showed a high overlap of the included studies.ConclusionsMixed delivery methods and intervention content showed the most effective results in supporting those caring for people with dementia. However, many papers do not separate the results for differing intervention contents or delivery; this needs to be considered when drawing conclusions. There was an overlap among the studies included in the reviews. This suggests a lack of current research on the effectiveness of web-based interventions for people caring for a person with dementia. There was also a lack of consistency in the outcome measures across all papers. Future studies can involve updating research on the effectiveness of these interventions while distinguishing between different intervention types, thus creating guidelines for the use of standardized measures to enable comparisons of intervention effects and improve the scientific quality of the overall research.Trial registrationPROSPERO CRD42021241559; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=241559.

Project description:IntroductionInclusion of informal carers in transitional care is challenging because of fast throughput and service fragmentation. This study aimed to understand informal carers' needs during the care transitions of older adults from inpatient care to the community.MethodsA qualitative exploratory design was used with mixed-methods data collection. Seventeen semi-structured telephone interviews were conducted with family carers; one focus group was conducted by videoconference with two family carers and three community-based advocacy and aged care providers; and eight semi-structured telephone interviews were undertaken with healthcare practitioners from rehabilitation services. Data were thematically analysed.FindingsAll carers described the main social challenge that they needed to address in transitional care as 'Needing to sustain family'. Carers reported their social needs across five solutions: 'Partnering with carers', 'Advocating for discharge', 'Accessing streamlined multidisciplinary care', 'Knowing how to care' and 'Accessing follow-up care in the community'. Focus group participants endorsed the findings from the carer interviews and added the theme 'Putting responsibility back onto carers'. All healthcare practitioners described the main social challenge that they needed to address as 'Needing to engage carers'. They reported their social solutions in three themes: 'Communicating with carers', 'Planning with carers' and 'Educating carers'.DiscussionFindings highlight the importance of reconstructing the meaning of transitional care and relevant outcomes to be inclusive of carers' experiences and their focus on sustaining family. Transitional care that includes carers should commence at the time of hospital admission of the older adult.ConclusionsFuture sustainable and high-quality health services for older adults will require transitional care that includes carers and older adults and efficient use of inpatient and community care resources. Healthcare professionals will require education and skills in the provision of transitional care that includes carers. To meet carers' support needs, models of transitional care inclusive of carers and older adults should be developed, implemented and evaluated.Public contributionThis study was conducted with the guidance of a Carer Advisory Group comprising informal carers with experience of care transitions of older adults they support and community-based organizations providing care and advocacy support to informal carers.

Project description:BackgroundInformal carers face difficulties and challenges when dealing with the behavioural and psychological symptoms of dementia (BPSD) of their family members or friends residing at home. Mobile health (mHealth) applications are promising for educating and supporting carers. However, needs analysis studies have not been conducted in Sri Lanka to develop mHealth applications for informal carers of people with dementia.AimsTo explore the needs to design an mHealth application for informal carers of people with dementia concerning the management of BPSD.MethodAn exploratory cross-sectional survey was conducted among a convenience sample (N = 203) of informal carers as a part of developing an mHealth application. Family members, relatives, or friends who lived with people with dementia and provided care on an unpaid basis for more than three months were included. The questionnaire included sociodemographic data, carer-rated prevalence and severity of BPSD, and informal carers' knowledge of dementia, carer burden, information-seeking sources, availability of smartphones, mHealth information seeking and perception of mHealth information seeking related to managing BPSD. Descriptive analysis and inferential tests were performed.ResultsInformal carers of people with dementia were predominantly female (70.4%), and 64% showed low knowledge of dementia. Of the participants, 35% reported a high carer burden, 53.7% reported a low burden, and only 11.3% reported no carer burden. Most of their care recipients (97%) had at least one BPSD. The prevalence and severity of BPSD were significantly and positively correlated with the carer burden. The participants' main source of information was health professionals. Most of them owned smartphones (63.5%), but none used mHealth applications for dementia-related information seeking. Approximately half of the respondents were ready to spend time (52.7%) and money (46.8%) on mHealth information seeking. Perceived mHealth usefulness was significantly associated with dementia knowledge, smartphone ownership, and readiness to spend time and money on mHealth information seeking.ConclusionInformal carers of people with dementia were affected by BPSD in their care recipients. This study explored carers' educational needs concerning dementia, BPSD, and carer burden. Informal carers could adapt mHealth for dementia-related information seeking. Their unmet needs in managing BPSD should be explored.

Project description:ObjectiveTo review and synthesise the evidence on informal carers' information needs in managing behavioural and psychological symptoms of dementia (BPSD) of their care recipients and related mobile health (mHealth) applications to inform the design of an mHealth application.DesignThis is a systematic integrative review guided by Whittemore and Knafl's five-stages framework. Six databases were searched: Cochrane, CINAHL, Embase, MEDLINE, ProQuest and PsycINFO. The key concepts included 'dementia', 'behavioural and psychological symptoms', 'informal carers' and ('information need' or 'mHealth application'). Peer-reviewed full-text articles published in English from 2000 to 2022 were included. The methodological rigour of studies was analysed using the Mixed Methods Appraisal Tool V.2018. Preferred Reporting Items for Systematic Reviews and Meta-Analyses-2020 reporting guidelines were followed.ResultsThis review included 34 studies, including quantitative (n=13), qualitative (n=17) and mixed-method (n=4) studies. Four major themes emerged from the reported studies: the need for addressing information needs on managing BPSD, the role of support systems in managing BPSD, self-care for carers and the role of mHealth applications in providing education and support for carers. In managing BPSD, carers seek knowledge about dementia and BPSD, the roles of the carers and misconceptions about BPSD. One study reported an mHealth application to monitor the behavioural issues of people with dementia.ConclusionInformal carers of people with dementia face a number of challenges when providing care for BPSD of their care recipients. The lack of knowledge on managing BPSD is a significant challenge. Support systems such as professional, social, residential, legal and eHealth have a significant role in managing the BPSD of people with dementia in the community. mHealth interventions are sparse to support BPSD management. These findings can be used in designing an mHealth application that addresses needs related to managing BPSD of informal carers of people with dementia.Prospero registration numberCRD42021238540.

Dataset Information

Barriers to using eHealth/mHealth platforms and perceived beneficial eHealth/mHealth platform features among informal carers of persons living with dementia: a qualitative study.

Background

Methods

Results

Conclusions

Publications

Barriers to using eHealth/mHealth platforms and perceived beneficial eHealth/mHealth platform features among informal carers of persons living with dementia: a qualitative study.

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