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Fulltext Experiences and needs of the caregivers of stroke survivors in Malaysia-A phenomenological exploration

Sidek NN, Kamalakannan S, Tengku Ismail TA, Musa KI, Ibrahim KA, Abdul Aziz Z, et al.

Front Neurol, 2022;13:996620.
PMID: 36212650 DOI: 10.3389/fneur.2022.996620

INTRODUCTION: Informal caregivers play a crucial role in supporting the activities of daily living, rehabilitation, and the road to recovery for stroke survivors. However, these informal caregivers are often reported as experiencing neglect and lack of recognition despite their primary contribution to stroke recovery. This study investigated the experiences of the caregivers of stroke survivors and access to stroke care in Malaysia.
METHOD: This qualitative study with a phenomenological approach utilized in-depth interviews, including ten primary caregivers, one formal caregiver, and stroke healthcare providers as the participants. The interviews were done until the data saturation was achieved, and the data was analyzed using thematic analysis.
RESULT: Three primary themes and 14 subthemes were identified from the interviews. The role of primary caregivers of stroke survivors had tremendous physical, mental and social impact on the caregivers. Caregivers had two primary needs. The need for information about comprehensive stroke care at home and the need for psychological support to themselves. The key internal driver for providing care was identified to be the motivation level of the stroke survivor and the external driver was identified to be the societal support with access to comprehensive stroke care.
CONCLUSION: The role of informal caregivers becomes critical for continuum of stroke care. As caregivers take up the roles and responsibilities of those who contribute to stroke rehabilitation single-handedly soon after hospital discharge. Results of this study highlights the needs for providing systematic support to caregivers for engaging them in effective stroke care, particularly in the community. Stroke service providers, policy makers and program planners must be sensitized to empower caregivers of stroke survivors in effectively supporting stroke survivor in their family on the road of recovery.
A mixed-methods study on the implementation of a mobile health application (mHealth app) for stroke caregivers in Malaysia: healthcare providers' perspective

Sidek NN, Tengku Ismail TA, Kamalakannan S, Chen XW, Romli MH, Mat Said MZ, et al.

Front Neurol, 2023;14:1222260.
PMID: 37905189 DOI: 10.3389/fneur.2023.1222260

INTRODUCTION: Recognizing the burden experienced by caregivers of stroke survivors, an intervention using mobile health applications (mHealth apps) has been proposed to support and empower stroke caregivers. This study aimed to assess the acceptability and expectations of healthcare providers, who play a vital role as gatekeepers in the healthcare system, to ensure the effectiveness and sustainability of the intervention.
METHODS: This was a concurrent mixed-method study design, with healthcare providers involved in stroke care management in the northeast regions of Malaysia as study participants. The qualitative component of the study was conducted using a phenomenological approach that involved in-depth interviews to explore the acceptability and expectations of healthcare providers regarding the adoption of mHealth apps in the context of stroke caregiving. The study was complemented by quantitative data collected through an online survey using an adjusted version of the technology acceptance model tool.
RESULTS: In total, 239 participants from diverse backgrounds and professions were enrolled in the study, with 12 in the qualitative component and 227 in the quantitative component. The findings from the quantitative survey showed that over 80% of the participants expressed their intention to use mHealth apps. The qualitative component generated two themes related to the acceptability and expectations of mHealth apps, which were integrated with the quantitative findings. Additionally, in-depth interviews revealed a new theme, namely the key features of mHealth, with three sub-themes: availability of services for caregivers, provision of knowledge skills, and supporting caregivers in managing stroke patients.
CONCLUSION: Healthcare providers demonstrated excellent acceptability of this mHealth intervention as part of caregiving assistance, particularly with the inclusion of essential key features. However, future investigations are necessary to establish the feasibility of integrating the mHealth app into the healthcare system and to ensure its long-term sustainability.
Fulltext Protocol for a qualitative study exploring the perception of need, importance and acceptability of a digital diabetes prevention intervention for women with gestational diabetes mellitus during and after pregnancy in Malaysia (Explore-MYGODDESS)

Sobri NHM, Ismail IZ, Hassan F, Papachristou Nadal I, Forbes A, Ching SM, et al.

BMJ Open, 2021 08 26;11(8):e044878.
PMID: 34446477 DOI: 10.1136/bmjopen-2020-044878

INTRODUCTION: Women who develop gestational diabetes mellitus (GDM) have an increased risk of developing type 2 diabetes, and to reduce this risk the women have to adopt healthy behaviour changes. Although previous studies have explored the challenges and facilitators to initiate behaviour change among women with GDM, there is limited data from Malaysian women. Thus, this study will explore the factors affecting the uptake of healthy behaviour changes and the use of digital technology among women and their healthcare providers (HCPs) to support healthy behaviour changes in women with GDM.
METHODS AND ANALYSIS: The study will be modelled according to the Capability, Opportunity, Motivation and Behaviour and Behaviour Change Wheel techniques, and use the DoTTI framework to identify needs, solutions and testing of a preliminary mobile app, respectively. In phase 1 (design and development), a focus group discussion (FGDs) of 5-8 individuals will be conducted with an estimated 60 women with GDM and 40 HCPs (doctors, dietitians and nurses). Synthesised data from the FGDs will then be combined with content from an expert committee to inform the development of the mobile app. In phase 2 (testing of early iterations), a preview of the mobile app will undergo alpha testing among the team members and the app developers, and beta testing among 30 women with GDM or with a history of GDM, and 15 HCPs using semi-structured interviews. The outcome will enable us to optimise an intervention using the mobile app as a diabetes prevention intervention which will then be evaluated in a randomised controlled trial.
ETHICS AND DISSEMINATION: The project has been approved by the Malaysia Research Ethics Committee. Informed consent will be obtained from all participants. Outcomes will be presented at both local and international conferences and submitted for publications in peer-reviewed journals.
Fulltext A Mobile Phone App for the Prevention of Type 2 Diabetes in Malaysian Women With Gestational Diabetes Mellitus: Protocol for a Feasibility Randomized Controlled Trial

Benton M, Iman I, Goldsmith K, Forbes A, Ching SM, Papachristou Nadal I, et al.

JMIR Res Protoc, 2022 Sep 08;11(9):e37288.
PMID: 36074545 DOI: 10.2196/37288

BACKGROUND: Over 50% of women with a history of gestational diabetes mellitus (GDM) will develop type 2 diabetes (T2D) in later life. Asian women experience a disproportionate risk of both GDM and T2D compared to women from other ethnic backgrounds. Lifestyle interventions and behavior change can delay or even prevent the onset of T2D. We have developed a digitalized diabetes prevention intervention for the prevention of T2D in Malaysian women with GDM.
OBJECTIVE: The protocol describes a randomized controlled trial (RCT) to test the feasibility of undertaking a definitive trial of a diabetes prevention intervention, including a smartphone app and group support. Secondary aims are to summarize anthropometric, biomedical, psychological, and lifestyle outcomes overall and by allocation group, and to undertake a process evaluation.
METHODS: This is a two-arm parallel feasibility RCT. A total of 60 Malaysian women with GDM will be randomized in the antenatal period to receive the intervention or standard care until 12 months post partum. The intervention is a diabetes prevention intervention delivered via a smartphone app developed based on the Information-Motivation-Behavioral Skills model of behavior change and group support using motivational interviewing. The intervention provides women with tailored information and support to encourage weight loss through adapted dietary intake and physical activity. Women in the control arm will receive standard care. The Malaysian Ministry of Health's Medical Research and Ethics Committee has approved the trial (NMRR-21-1667-60212).
RESULTS: Recruitment and enrollment began in February 2022. Future outcomes will be published in peer-reviewed health-related research journals and presented at national, regional, or state professional meetings and conferences. This publication is based on protocol version 2, January 19, 2022.
CONCLUSIONS: To our knowledge, this will be the first study in Malaysia that aims to determine the feasibility of a digital intervention in T2D prevention among women with GDM. Findings from this feasibility study will inform the design of a full-scale RCT in the future.
TRIAL REGISTRATION: ClinicalTrials.gov NCT05204706; https://clinicaltrials.gov/ct2/show/NCT05204706.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/37288.