Indigenous data governance approaches applied in research using routinely collected health data: a scoping review.

Globally, there is a growing acknowledgment of Indigenous Peoples' rights to control data related to their communities. This is seen in the development of Indigenous Data Governance standards. As health data collection increases, it's crucial to apply these standards in research involving Indigenous communities. Our study, therefore, aims to systematically review research using routinely collected health data of Indigenous Peoples, understanding the Indigenous Data Governance approaches and the associated advantages and challenges. We searched electronic databases for studies from 2013 to 2022, resulting in 85 selected articles. Of these, 65 (77%) involved Indigenous Peoples in the research, and 60 (71%) were authored by Indigenous individuals or organisations. While most studies (93%) provided ethical approval details, only 18 (21%) described Indigenous guiding principles, 35 (41%) reported on data sovereignty, and 28 (33%) addressed consent. This highlights the increasing focus on Indigenous Data Governance in utilising health data. Leveraging existing data sources in line with Indigenous data governance principles is vital for better understanding Indigenous health outcomes.

Detecting user experience issues from mHealth apps that support stroke caregiver needs: an analysis of user reviews.

Background: Existing research has demonstrated the potential of mHealth apps in improving the caregiving outcomes of stroke. Since most of the apps were published in commercially available app stores without explaining their design and evaluation processes, it is necessary to identify the user experience issues to promote long-term adherence and usage. Objective: The purpose of this study was to utilize published user reviews of commercially available apps to determine the user experience issues to guide future app development in stroke caregiving. Methods: User reviews were extracted from the previously identified 46 apps that support stroke caregiving needs using a python-scraper. The reviews were pre-processed and filtered using python scripts to consider English reviews that described issues faced by the user. The final corpus was categorized based on TF-IDF vectorization and k-means clustering technique, and the issues extracted from the various topics were classified based on the seven dimensions of user experience to highlight factors that may affect the usage of the app. Results: A total of 117,364 were extracted from the two app stores. After filtration, 13,368 reviews were included and classified based on the user experience dimensions. Findings highlight critical issues that affect the usability, usefulness, desirability, findability, accessibility, credibility, and value of the app that contribute to decreased satisfaction and increased frustration. Conclusion: The study identified several user experience issues due to the inability of the app developers to understand the needs of the user. Further, the study describes the inclusion of a participatory design approach to promote an improved understanding of user needs; therefore, limiting any issues and ensuring continued use.

Design and development of a smartphone app for hypertension management: An intervention mapping approach.

Background: Several research studies have demonstrated the potential of mobile health apps in supporting health management. However, the design and development process of these apps are rarely presented. Objective: We present the design and development of a smartphone-based lifestyle app integrating a wearable device for hypertension management. Methods: We used an intervention mapping approach for the development of theory- and evidence-based intervention in hypertension management. This consisted of six fundamental steps: needs assessment, matrices, theoretical methods and practical strategies, program design, adoption and implementation plan, and evaluation plan. To design the contents of the intervention, we performed a literature review to determine the preferences of people with hypertension (Step 1) and necessary objectives toward the promotion of self-management behaviors (Step 2). Based on these findings, we implemented theoretical and practical strategies in consultation with stakeholders and researchers (Steps 3), which was used to identify the functionality and develop an mHealth app (Step 4). The adoption (Step 5) and evaluation (Step 6) of the mHealth app will be conducted in a future study. Results: Through the needs analysis, we identified that people with hypertension preferred having education, medication or treatment adherence, lifestyle modification, alcohol and smoking cessation and blood pressure monitoring support. We utilized MoSCoW analysis to consider four key elements, i.e., education, medication or treatment adherence, lifestyle modification and blood pressure support based on past experiences, and its potential benefits in hypertension management. Theoretical models such as (i) the information, motivation, and behavior skills model, and (ii) the patient health engagement model was implemented in the intervention development to ensure positive engagement and health behavior. Our app provides health education to people with hypertension related to their condition, while utilizing wearable devices to promote lifestyle modification and blood pressure management. The app also contains a clinician portal with rules and medication lists titrated by the clinician to ensure treatment adherence, with regular push notifications to prompt behavioral change. In addition, the app data can be reviewed by patients and clinicians as needed. Conclusions: This is the first study describing the design and development of an app that integrates a wearable blood pressure device and provides lifestyle support and hypertension management. Our theory-driven intervention for hypertension management is founded on the critical needs of people with hypertension to ensure treatment adherence and supports medication review and titration by clinicians. The intervention will be clinically evaluated in future studies to determine its effectiveness and usability.

Information, involvement, self-care and support-The needs of caregivers of people with stroke: A grounded theory approach.

BACKGROUND: Globally, stroke is a leading cause of death and disability, with most care undertaken by caregivers who are generally family and friends without prior experience of care. The lack of experience or unpreparedness results in feelings of uncertainty, burnout, anxiety, burden, etc. Hence, it is necessary to identify the needs of caregivers to better support them in their caregiving journey and improve the quality of care delivered. METHODS: The study employed a grounded theory methodology that utilizes information gathered from literature reviews and social media to represent the needs and create a storyline visually. The storyline is further refined and evaluated using an online survey of 72 participants recruited through online stroke caregiving communities. RESULTS: The study identified four core categories of needs: (i) Information: sufficient information delivered in layman's terms based on the individual situation of the caregiver and survivor through oral and hands-on demonstrations, (ii) Involvement: inclusion in the decision-making processes at different stages of recovery through face-to-face communication at the hospital, (iii) Self-care: ability to engage in work and leisure activities, (iv) Support: receive support in the form of resources, services and finances from different other stakeholders. CONCLUSIONS: There is a need to create a caregiver-centered approach in stroke recovery to ensure limited obstruction to care and reduced uncertainty in stroke recovery. Moreover, through the inclusion of caregivers in stroke recovery, it may be possible to reduce the burden of care to the caregiver and ensure the satisfaction of the healthcare system throughout stroke recovery.

mHealth intervention for carers of individuals with a history of stroke: Heuristic evaluation and user perspectives.

Background: Caregiving in stroke is complex, with most carers having little to no preparation to care for individuals with a history of stroke, leading to emotional impact. Technologies such as Mobile Health can provide the carer with real-time support and prepare the carer to assume their new roles and responsibilities. Objectives: To perform a heuristic evaluation of mHealth interventions designed to support carers of individuals with a history of stroke and determine the user preferences in stroke caregiving technology to inform future researchers and developers regarding the best practices to support these individuals. Methods: Twenty adults (i.e. 10 usability experts and 10 carers) participated in an iterative user-centred design study that focused on developing and modifying the mHealth intervention (StrokeCaregiver (SeCr)) created to support stroke caregiving. The intervention was repeated in four cycles, including two cycles with five usability experts each and five carers each. Results: SeCr was iteratively improved to develop a highly usable product in multiple cycles. Participants demonstrated critical needs in personalized information support, communication with their healthcare needs, and the trust of the user, content, and developer. These critical needs are required to be met to promote long-term acceptance and adherence. Conclusions: While SeCr was developed to address the needs of carers of individuals with a history of stroke, several considerations must be made to ensure it can be used in a real-world setting. Researchers and developers can use co-design or living lab approaches to further meet the needs and expectations of the carer and enable these individuals to be better prepared for stroke caregiving.

Utilization of social media communities for caregiver information support in stroke recovery: An analysis of content and interactions.

BACKGROUND: Caregivers often use the internet to access information related to stroke care to improve preparedness, thereby reducing uncertainty and enhancing the quality of care. METHOD: Social media communities used by caregivers of people affected by stroke were identified using popular keywords searched for using Google. Communities were filtered based on their ability to provide support to caregivers. Data from the included communities were extracted and analysed to determine the content and level of interaction. RESULTS: There was a significant rise in the use of social media by caregivers of people affected by stroke. The most popular social media communities were charitable and governmental organizations with the highest user interaction-this was for topics related to stroke prevention, signs and symptoms, and caregiver self-care delivered through video-based resources. CONCLUSION: Findings show the ability of social media to support stroke caregiver needs and practices that should be considered to increase their interaction and support.

Technology-based support for stroke caregiving: A rapid review of evidence.

AIM: This rapid review examines the technology-based interventions for caregivers of stroke proposed in the literature while also identifying the acceptance, effectiveness and satisfaction of the implemented approaches. BACKGROUND: The increasing burden of supporting stroke survivors has resulted in caregivers searching for innovative solutions, such as technology-based interventions, to provide better care. Hence, its potential to support caregivers throughout the disease trajectory needs to be assessed. EVALUATION: Five electronic databases were systematically searched for articles related to stroke caregiving technologies based on well-defined inclusion and exclusion criteria. KEY ISSUE(S): Fifteen articles met the inclusion criteria that focused on supporting caregivers through functionalities such as education, therapy and support, remote consultations, health assessments and logs and reminders using different devices. The majority of interventions demonstrated positive conclusions for caregiving impact, acceptance, effectiveness and satisfaction. CONCLUSION: Findings highlight the influences of technology in improving stroke caregiving and the need to include user-centred design principles to create a meaningful, actionable and feasible system for caregivers. IMPLICATIONS FOR NURSING MANAGEMENT: Technology can educate and support stroke caregivers, thereby minimizing uncertainty and ensuring better care for the survivor.

Caregiver Engagement in Stroke Care: Opportunities and Challenges in Australia and Denmark.

Globally, there is a rise in incident cases of stroke, particularly in low- and middle-income countries, due to obesity-related and lifestyle risk factors, including health issues such as high cholesterol, diabetes and hypertension. Since the early 20th century, stroke mortality has declined due to proper management of the risk factors and improved treatment practices. However, despite the decline in mortality, there is an increase in the levels of disability that requires long-term support. In countries such as Australia and Denmark, where most care is provided within the community; family members, generally spouses, assume the role of caregiver, with little to no preparation that affects the quality of care provided to the person living with stroke. While past research has highlighted aspects to improve caregiver preparedness of stroke and its impact on care; health planning, recovery, and public health policies rarely consider these factors, reducing engagement and increasing uncertainty. Hence, there is a need to focus on improving strategies during recovery to promote caregiver engagement. In this study, we, therefore, try to understand the needs of the caregiver in stroke that limit engagement, and processes employed in countries such as Australia and Denmark to provide care for the person with stroke. Based on our understanding of these factors, we highlight the potential opportunities and challenges to promote caregiving engagement in these countries.

Understanding the Methodological Issues and Solutions in the Research Design of Stroke Caregiving Technology.

The rise in the number of cases of stroke has resulted in a significant burden on the healthcare system. As a result, the majority of care for the person living with stroke occurs within the community, resulting in caregivers being a central and challenged agent in care. To better support caregivers during the recovery trajectory poststroke, we investigated the role of health technologies to promote education and offer various kinds of support. However, the introduction of any new technology comes with challenges due to the growing need for more user-centric systems. The integration of user-centric systems in stroke caregiving has the potential to ensure long-term acceptance, success, and engagement with the technology, thereby ensuring better care for the person living with stroke. We first briefly characterize the affordances of available technologies for stroke caregiving. We then discuss key methodological issues related to the acceptance to such technologies. Finally, we suggest user-centered design strategies for mitigating such challenges.

mHealth applications to support caregiver needs and engagement during stroke recovery: A content review.

Caregiving in stroke results in severe physical, psychological, and social impacts on the caregiver. Over the past few years, researchers have explored the use of mHealth technologies to support healthcare-related activities due to their ability to provide real-time care at any given place or time. The purpose of this content review is to investigate mHealth apps in supporting stroke caregiving engagement based on three aspects: motivation, value, and satisfaction. We searched app stores and repositories for apps related to stroke caregiving published up to September 2020. Extracted apps were reviewed and filtered using inclusion criteria, and then downloaded onto compatible devices to determine eligibility. Results were compared with evidence-based frameworks to identify the ability of these apps in engaging and supporting the caregiver. Forty-seven apps were included in this review that enabled caregivers to support their needs, such as adjustment to new roles and relationships, involvement in care and caring for oneself using several different functionalities. These functionalities include information resources, risk assessment, remote monitoring, data sharing, reminders and so on. However, no single app was identified that focuses on all aspects of stroke caregiving. We also identified several challenges faced by users through their reviews and the factors associated with value and satisfaction. Our findings can add to the knowledge of existing mHealth technologies and their functionalities to support stroke caregiving needs, and the importance of considering user engagement in the design. They can be used by developers and researchers looking to design better mHealth apps for stroke caregiving.