Designing an mHealth application for informal carers concerning the management of behavioural and psychological symptoms of dementia: a need analysis survey.

BACKGROUND: Informal 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. AIMS: To explore the needs to design an mHealth application for informal carers of people with dementia concerning the management of BPSD. METHOD: An 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. RESULTS: Informal 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. CONCLUSION: Informal 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.

Informal carers' information needs in managing behavioural and psychological symptoms of people with dementia and related mHealth applications: a systematic integrative review to inform the design of an mHealth application.

OBJECTIVE: To 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. DESIGN: This 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. RESULTS: This 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. CONCLUSION: Informal 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 NUMBER: CRD42021238540.

Information needs and mHealth applications for carers of people with dementia in managing behavioural and psychological symptoms of care recipients: an integrative review protocol.

INTRODUCTION: This integrative review aims to synthesise, appraise and analyse the evidence on informal carers' information needs, features and functions of available mHealth applications, and informal carers' usability and engagement with mHealth applications for managing behavioural and psychological symptoms of dementia (BPSD). METHODS AND ANALYSIS: This integrative review will include quantitative, qualitative and mixed-methods studies and follow the 'Preferred Reporting for Systematic Reviews and Meta-Analyses 2020' guidelines. Peer-reviewed articles published in English from 2000 to 2021 will be included from Cochrane Library, CINHAL, Embase, MEDLINE, ProQuest and PsycINFO. Five broader concept categories will be included: 'dementia', 'behavioural and psychological symptoms', 'informal carers', '(information need' OR 'mHealth application)'. In title and abstract review, first, the researchers will independently screen 10% of sources for consensus, and one reviewer will screen the rest. In full-text review, two reviewers will conduct the screening process and assess the relevancy of the full-text articles using a two-point scale (high-low) and the methodological quality of included articles using the Mixed Methods Appraisal Tool. Narrative synthesis will be employed to synthesise themes. The findings may identify the need for planning interventions for carers of people with dementia concerning the management of BPSD. ETHICS AND DISSEMINATION: Ethics approval not required. This review will be published in a peer-review journal and be presented at national and international conferences. PROSPERO REGISTRATION NUMBER: CRD42021238540.