Dataset Information

Overcoming barriers to the adoption of locating technologies in dementia care: a multi-stakeholder focus group study.

ABSTRACT:

Background

Locating technologies are a subtype of assistive technology that aim to support persons with dementia by helping manage spatial orientation impairments and provide aid to care partners by intervening when necessary. Although a variety of locating devices are commercially available, their adoption has remained low in the past years. Several studies have explored barriers to the adoption of assistive technologies from the perspective of professional stakeholders, but in-depth explorations for locating technologies are sparse. Additionally, the inputs of business professionals are lacking. The aim of this study was to expand knowledge on barriers to the adoption of locating technologies from a multi-stakeholder professional perspective, and to explore strategies to optimize adoption.

Methods

In total, 22 professionals working in business (n = 7), healthcare (n = 6) and research (n = 9) fields related to gerontology and gerontechnology participated in our focus group study. Perceptions on the value of using locating technologies for dementia care, barriers to their adoption, as well as salient services and information dissemination strategies were explored. After verbatim transcription, transcripts were analysed following an inductive data-driven content analysis approach in MAXQDA.

Results

Six key adoption barriers centering on: (1) awareness-, (2) technological-, (3) product characteristic- and (4) capital investment-based limitations, (5) unclear benefits, as well as (6) ethical concerns emerged. The interplay between barriers was high. Five core themes on services and information dissemination strategies centering on: (1) digital autonomy support, (2) emergency support, (3) information dissemination actors, (4) product acquisition, and (5) product advertising were extracted.

Conclusions

Our study with interdisciplinary stakeholders expands knowledge on barriers to the adoption of locating technologies for dementia care, and reinforces recommendations that an interdisciplinary strategy is needed to optimize adoption. Also, our findings show that focusing on services to increase digital autonomy and on information dissemination strategies has been largely overlooked and may be particularly effective.

SUBMITTER: Freiesleben SD

PROVIDER: S-EPMC8218472 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundPersons living with dementia require increasing levels of care, and the care model has evolved. The Centers for Medicare and Medicaid Services is transitioning long-term care services from institutional care to home- or community-based services, including reimbursement for nonclinical services. Although home care companies are positioned to handle this transition, they need innovative solutions to address the special challenges posed by caring for persons living with dementia. To live at home longer, these persons require support from formal caregivers (FCGs; ie, paid professionals), who often lack knowledge of their personal histories and have high turnover, or informal caregivers (eg, family or friends), who may have difficulty coping with behavioral and psychological symptoms of dementia. The Generation Connect platform was developed to support these individuals and their formal and informal caregivers. In preliminary studies, the platform improved mood and influenced caregiver satisfaction. To enhance platform effectiveness, Generation Connect received a grant from the National Institutes of Health Small Business Innovation Research to improve clinical outcomes, reduce health care costs, and lower out-of-pocket costs for persons living with dementia who receive care through home care agencies.ObjectiveThis study aims to evaluate information elicited from a series of stakeholder focus groups to understand existing processes, needs, barriers, and goals for the use of the Generation Connect platform by home care agencies and formal and informal caregivers.MethodsA series of focus groups were conducted with home care agency corporate leadership, home care agency franchise owners, home care agency FCGs, and informal caregivers of persons living with dementia. The qualitative approach allowed for unrestricted idea generation that best informed the platform development to enable home care providers to differentiate their dementia care services, involve informal caregivers, improve FCG well-being, and extend the ability of persons living with dementia to age in place. Using the Technology-Enabled Caregiving in the Home framework, an inductive and iterative content analysis was conducted to identify thematic categories from the transcripts.ResultsOverall, 39 participants participated across the 6 stakeholder focus groups. The following five overarching themes were identified: technology related; care services; data, documentation, and outcomes; cost, finance, and resources; and resources for caregivers. Within each theme, the most frequent subthemes were identified. Exemplar stakeholder group statements provided support for each of the identified themes.ConclusionsThe focus group results will inform the further development of the Generation Connect platform to reduce the burden of caregiving for persons living with dementia, evaluate changes in cognition, preserve functional independence, and promote caregiver engagement between these individuals. The next step is to evaluate the effectiveness of the revised platform in the National Institutes of Health Small Business Innovation Research phase 2 clinical trial to assess the efficacy of its evidence-based interventions and market viability.

Project description:BackgroundConventional clinical trials are essential for generating high-quality evidence by measuring the efficacy of interventions in rigorously controlled clinical environments. However, their execution can be expensive and time-consuming. In addition, clinical trials face several logistical challenges regarding the identification, recruitment, and retention of participants; consistent data collection during trials; and adequate patient follow-up. This might lead to inefficient resource utilization. In order to partially address the current problems with conventional clinical trials, there exists the need for innovations. One such innovation is the virtual clinical trial (VCT). VCTs allow for the collection and integration of diverse data from multiple information sources, such as electronic health records, clinical and demographic data, patient-reported outcomes, anthropometric and activity measurements, and data collected by digital biomarkers or (small) samples that participants can collect themselves. Although VCTs have the potential to provide substantial value to clinical research and patients because they can lower clinical trial costs, increase the volume of data collected from patients' daily environment, and reduce the burden of patient participation, so far VCT adoption is not commonplace.ObjectiveThis paper aims to better understand the barriers and facilitators to VCT adoption by determining the factors that influence individuals' considerations regarding VCTs from the perspective of various stakeholders.MethodsBased on online semistructured interviews, a qualitative study was conducted with pharmaceutical companies, food and health organizations, and an applied research organization in Europe. Data were thematically analyzed using Rogers' diffusion of innovation theory.ResultsA total of 16 individuals with interest and experience in VCTs were interviewed, including persons from pharmaceutical companies (n=6), food and health organizations (n=4), and a research organization (n=6). Key barriers included a potentially low degree of acceptance by regulatory authorities, technical issues (standardization, validation, and data storage), compliance and adherence, and lack of knowledge or comprehension regarding the opportunities VCTs have to offer. Involvement of regulators in development processes, stakeholder exposure to the results of pilot studies, and clear and simple instructions and assistance for patients were considered key facilitators.ConclusionsCollaboration among all stakeholders in VCT development is crucial to increase knowledge and awareness. Organizations should invest in accurate data collection technologies, and compliance of patients in VCTs needs to be ensured. Multicriteria decision analysis can help determine if a VCT is a preferred option by stakeholders. The findings of this study can be a good starting point to accelerate the development and widespread implementation of VCTs.

Project description:ObjectivesThe purpose of this study was to partner with stakeholders to identify gaps in care for persons living with dementia and their family caregivers and from this list, identify priorities for dementia care research.MethodsUsing a community-engaged research approach, a Stakeholder Advisory Council (SAC) consisting of diverse membership including persons living with dementia and family caregivers was convened. Through our work with the SAC, along with input from the wider network through a symposium, webinars, and an online learning community, gaps in dementia care and a list of topics for dementia care research was generated. This list was reduced to 46 topics for dementia care research and sent to stakeholders (persons living with dementia, family caregivers, and health/social care professionals in dementia care) to be prioritized by rating each of the 46 topics as "Not so important," "Important," or "Very important." Priorities for dementia care were summarized by frequencies and proportions.ResultsA total of 186 participants completed the survey from August through October 2020, including 23 (12.4%) persons living with dementia, 101 (54.3%) family caregivers, and 62 (33.3%) health/social care professionals. Consistent across stakeholder groups was the focus on research on how best to support families following a diagnosis of dementia. Among persons living with dementia, research focused on support for continuing to live in their own homes was ranked as the highest priority, rated by 91.3% as "Very Important". High priority research areas for family caregivers included interventions to slow cognitive decline (76.3%) as well as non-pharmacological approaches to manage behavioral symptoms (74.7%). The highest priority research topics for health/social care professionals were focused on the diagnosis including benefits of an early diagnosis (71.4%), how best to deliver the diagnosis (70.9%), and supports needed following a diagnosis (78.6%).ConclusionsThis project draws on the strengths of its multi-stakeholder perspective to support patient-centered outcomes research. Findings are intended to inform those who conduct research and those who fund research about which research topics stakeholders believe are most important and thus have greatest potential to improve the quality of life among people living with dementia and their families.

Project description:Media guidelines on safe suicide-related reporting are within the suicide prevention armamentarium. However, implementation issues beleaguer real-world practice. This study evaluated the perspectives of the Malaysian media community, persons with lived experience of suicidal behavior (PLE), and mental health professionals (MHP) on suicide-related reporting in terms of the impact, strategies, challenges, and the implementation of guidelines on safe reporting. Three focus group discussions of purposively sampled Malaysian media practitioners (n = 8), PLE (n = 6), and MHP (n = 7) were audio-recorded, transcribed, coded and thematically analyzed. Inclusion criteria were: English fluency, no clinical depression or suicidal ideation (current), no recent previous suicide attempts or suicide bereavement. Three major themes emerged: (1) Unsafe Reporting; (2) Impact; and (3) Safe Reporting. Most described current reporting as unsafe by being potentially triggering to media users and may contribute to contagion effect. Positive impacts identified included raised awareness toward suicide and its prevention. Unsafe reporting was attributed to inadequate awareness, knowledge, and guidance, lack of empathy and accountability, job-related factors, popularity-seeking, lack of monitoring and governance, and information source(s) with unsafe content. Majority agreed on how suicide stories should be framed to produce a safe report. The media community diverged on how detailed a suicide story should be. Safe reporting challenges included difficulties in balancing beneficial versus harmful details, social media ubiquity and its citizen reporters. Participants suggested these safe reporting strategies: stakeholder engagement, educational approaches, improving governance and surveillance, and guidelines revision. Most acknowledged the relevance of guidelines but were unaware of the existence of local guidelines. Implementation challenges included the dilemma in balancing media industry needs vis-à-vis safe reporting requirements, stakeholder engagement difficulties and social media regulation. There is poor awareness regarding safe suicide-related reporting across all groups. PLE and MHP were negatively impacted by current unsafe messaging which aggravated trauma and grief reactions. Postvention support gaps for mental health professionals were highlighted. Safe reporting promotion strategies should include stakeholder engagement to increase awareness on minimizing Werther and maximizing Papageno effects. Strategic re-examination and dissemination of local media guidelines to address new media issues, and effective surveillance mechanisms, are crucial in sustainable improvement of safe reporting practices.

Project description:ObjectivesClinical guidelines recommend regular physical activity for patients with heart failure to improve functional capacity and symptoms and to reduce hospitalisation. Cardiac rehabilitation programmes have demonstrated success in this regard; however, uptake and adherence are suboptimal. Home-based physical activity programmes have gained popularity to address these issues, although it is acknowledged that their ability to provide personalised support will impact on their effectiveness. This study aimed to identify barriers and facilitators to engagement and adherence to a home-based physical activity programme, and to identify ways in which it could be integrated into the care pathway for patients with heart failure.DesignA qualitative focus group study was conducted. Data were analysed using thematic analysis.ParticipantsA purposive sample of 16 patients, 82% male, aged 68±7 years, with heart failure duration of 10±9 years were recruited.InterventionA 12-week behavioural intervention targeting physical activity was delivered once per week by telephone.ResultsTen main themes were generated that provided a comprehensive overview of the active ingredients of the intervention in terms of engagement and adherence. Fear of undertaking physical activity was reported to be a significant barrier to engagement. Influences of family members were both barriers and facilitators to engagement and adherence. Facilitators included endorsement of the intervention by clinicians knowledgeable about physical activity in the context of heart failure; ongoing support and personalised feedback from team members, including tailoring to meet individual needs, overcome barriers and increase confidence.ConclusionsEndorsement of interventions by clinicians to reduce patients' fear of undertaking physical activity and individual tailoring to overcome barriers are necessary for long-term adherence. Encouraging family members to attend consultations to address misconceptions and fear about the contraindications of physical activity in the context of heart failure should be considered for adherence, and peer-support for long-term maintenance.Trial registration numberNCT03677271.

Project description:BACKGROUND:A range of digital technologies are available to lay people to find, share, and generate health-related information. Few studies have directed attention specifically to how women are using these technologies from the diverse array available to them. Even fewer have focused on Australian women's use of digital health. OBJECTIVE:The Australian Women and Digital Health Project aimed to investigate which types of digital technologies women used regularly for health-related purposes and which they found most helpful and useful. Qualitative methods-semistructured interviews and focus groups-were employed to shed light on the situated complexities of the participants' enactments of digital health technologies. The project adopted a feminist new materialism theoretical perspective, focusing on the affordances, relational connections, and affective forces that came together to open up or close off the agential capacities generated with and through these enactments. METHODS:The project comprised two separate studies including a total of 66 women. In study 1, 36 women living in the city of Canberra took part in face-to-face interviews and focus groups, while study 2 involved telephone interviews with 30 women from other areas of Australia. RESULTS:The affordances of search engines to locate health information and websites and social media platforms for providing information and peer support were highly used and valued. Affective forces such as the desire for trust, motivation, empowerment, reassurance, control, care, and connection emerged in the participants' accounts. Agential capacities generated with and through digital health technologies included the capacity to seek and generate information and create a better sense of knowledge and expertise about bodies, illness, and health care, including the women's own bodies and health, that of their families and friends, and that of their often anonymous online social networks. The participants referred time and again to appreciating the feelings of agency and control that using digital health technologies afforded them. When the technologies failed to work as expected, these agential capacities were not realized. Women responded with feelings of frustration, disappointment, and annoyance, leading them to become disenchanted with the possibilities of the digital technologies they had tried. CONCLUSIONS:The findings demonstrate the nuanced and complex ways in which the participants were engaging with and contributing to online sources of information and using these sources together with face-to-face encounters with doctors and other health care professionals and friends and family members. They highlight the lay forms of expertise that the women had developed in finding, assessing, and creating health knowledges. The study also emphasized the key role that many women play in providing advice and health care for family members not only as digitally engaged patients but also as digitally engaged carers.