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Multiple Sclerosis and Related Disorders Jun 2024Resilience-promoting resources are critically needed to support positive caregiving experiences for multiple sclerosis (MS) caregivers. A digital toolkit offers a...
BACKGROUND
Resilience-promoting resources are critically needed to support positive caregiving experiences for multiple sclerosis (MS) caregivers. A digital toolkit offers a flexible way to access and use evidence-based resources that align with MS caregivers' interests and needs over time.
OBJECTIVE
We explored the perspectives of key knowledge users regarding content areas, features, and other considerations to inform an MS caregiver resilience digital toolkit.
METHODS
Twenty-two individuals completed a demographic survey as part of this study: 11 MS family caregivers, 7 representatives of organizations providing support services for people with MS and/or caregivers, and 4 clinicians. We conducted nine semi-structured individual interviews and two focus groups. Data were analyzed using content analysis.
RESULTS
Participants recommended that a digital toolkit should include content focused on promoting MS caregivers' understanding of the disease, its trajectory and available management options, and enhancing caregiving skills and caregivers' ability to initiate and maintain behaviours to promote their own well-being. Features that allow for tracking and documenting care recipients' and caregivers' experiences, customization of engagement, and connectivity with other sources of support were also recommended. Participants suggested a digital toolkit should be delivered through an app with web browser capabilities accessible on smartphones, tablets, or laptops. They also acknowledged the need to consider how users' previous technology experiences and issues related to accessibility, usability, privacy and security could influence toolkit usage.
CONCLUSION
These findings will guide future toolkit development and evaluation. More broadly, this study joins the chorus of voices calling for critical attention to the well-being of MS family caregivers.
PubMed: 38954857
DOI: 10.1016/j.msard.2024.105736 -
Current Opinion in Psychology Jun 2024Contemporary, multidisciplinary research sheds light on data privacy implications of artificial intelligence (AI). This review adopts an AI ecosystem perspective and... (Review)
Review
Contemporary, multidisciplinary research sheds light on data privacy implications of artificial intelligence (AI). This review adopts an AI ecosystem perspective and proposes a process-outcome continuum to classify AI technologies; this perspective helps to understand the nuances of AI relative to psychological aspects of privacy decision-making. Specifically, different types of AI affect traditionally studied privacy decision-making frameworks including the privacy calculus, psychological ownership, and social influence in varied ways. By understanding how the process- or outcome-orientation of an AI technology affects privacy decision-making, we explain how AI creates privacy benefits but also poses challenges. Future research is needed across privacy decision-making, but also more generally at the intersection of privacy and AI, to help foster an ethical, sustainable society.
PubMed: 38954851
DOI: 10.1016/j.copsyc.2024.101829 -
IEEE Computer Graphics and Applications Jul 2024-Learning space for children with different sensory needs, nowadays, can be interactive, multisensory experiences, designed collaboratively by (i) specialists in...
-Learning space for children with different sensory needs, nowadays, can be interactive, multisensory experiences, designed collaboratively by (i) specialists in special-needs learning, (ii) Extended Realities (XR)-technologists and (iii) sensorial-diverse children, to provide the motivation, challenge and development of key skills. While traditional audio and visual sensors in XR is challenging for XR-applications to meet the needs of visually and hearing impaired sensorial-diverse children, our research goes a step ahead by integrating sensory technologies including haptic, tactile, kinaesthetic and olfactory feedback that was well received by the children. Our research also demonstrates the protocols for (i) development of a suite of XR-applications; (ii) methods for experiments and evaluation; and (iii) tangible improvements in XR learning experience. Our research considered and is in compliance with the ethical and social implications and has the necessary approval for accessibility, user safety, and privacy.
PubMed: 38954577
DOI: 10.1109/MCG.2024.3419699 -
Current Allergy and Asthma Reports Jul 2024Artificial intelligence (AI), be it neuronal networks, machine learning or deep learning, has numerous beneficial effects on healthcare systems; however, its potential... (Review)
Review
PURPOSE OF REVIEW
Artificial intelligence (AI), be it neuronal networks, machine learning or deep learning, has numerous beneficial effects on healthcare systems; however, its potential applications and diagnostic capabilities for immunologic diseases have yet to be explored. Understanding AI systems can help healthcare workers better assimilate artificial intelligence into their practice and unravel its potential in diagnostics, clinical research, and disease management.
RECENT FINDINGS
We reviewed recent advancements in AI systems and their integration in healthcare systems, along with their potential benefits in the diagnosis and management of diseases. We explored machine learning as employed in allergy diagnosis and its learning patterns from patient datasets, as well as the possible advantages of using AI in the field of research related to allergic reactions and even remote monitoring. Considering the ethical challenges and privacy concerns raised by clinicians and patients with regard to integrating AI in healthcare, we explored the new guidelines adapted by regulatory bodies. Despite these challenges, AI appears to have been successfully incorporated into various healthcare systems and is providing patient-centered solutions while simultaneously assisting healthcare workers. Artificial intelligence offers new hope in the field of immunologic disease diagnosis, monitoring, and management and thus has the potential to revolutionize healthcare systems.
PubMed: 38954325
DOI: 10.1007/s11882-024-01152-y -
AIDS and Behavior Jul 2024Long Acting Injectable (LAI) therapy to treat HIV is an alternative to daily oral medications. The success of early roll-out of LAI to eligible patients requires a...
Long Acting Injectable (LAI) therapy to treat HIV is an alternative to daily oral medications. The success of early roll-out of LAI to eligible patients requires a better understanding of patients' awareness and interest in this novel therapy. We administered an electronic survey to patients attending an urban HIV clinic in the US South. Eligible participants were 18 + years old with a most recent HIV-1 viral load < 200 copies/ml, without any evidence of genotypic resistance to LAI components or chronic hepatitis B. Survey recipients were asked about current treatment, engagement in care, and knowledge of LAI. Between January-April 2023, 480 patients were screened; 319 were eligible, and 155 (49%) completed the survey. The majority (119, 77%) were aware of, and 87 (56%) were interested in LAI. In regression analysis, only age was associated with interest in LAI (OR 0.95, 95% CI 0.92,0.99). Among proposed benefits of injectables, ease of travel without pills, lack of daily pill-taking, and fewer medication interactions were most appealing. Among proposed concerns with injectables, higher cost and insurance coverage of the new medicine were most worrisome. A large majority of people with HIV (PWH) are aware of the newest treatment available, and just over half of our sample expressed interest in LAI. Older age was associated with lower interest in LAI. LAI is appealing for its convenience, privacy, and avoidance of drug interactions, while the increased costs associated with LAI need to be addressed.
PubMed: 38954172
DOI: 10.1007/s10461-024-04423-x -
Journal of Advanced Nursing Jul 2024To describe key features of a co-designed nurse-led model of care intended to improve access to early medication abortion and long-acting reversible contraception in...
AIM
To describe key features of a co-designed nurse-led model of care intended to improve access to early medication abortion and long-acting reversible contraception in rural Australian general practice.
DESIGN
Co-design methodology informed by the Experience-Based Co-Design Framework.
METHODS
Consumers, nurses, physicians and key women's health stakeholders participated in a co-design workshop focused on the patient journey in seeking contraception or abortion care. Data generated at the workshop were analysed using Braun and Clarkes' six-step process for thematic analysis.
RESULTS
Fifty-two participants took part in the co-design workshop. Key recommendations regarding setting up the model included: raising awareness of the early medication abortion and contraceptive implant services, providing flexible booking options, ensuring appointment availability, providing training for reception staff and fostering good relationships with relevant local services. Recommendations for implementing the model were also identified, including the provision of accessible information, patient-approved communication processes that ensure privacy and safety, establishing roles and responsibilities, supporting consumer autonomy and having clear pathways for referrals and complications.
CONCLUSION
Our approach to experience-based co-design ensured that consumer experiences, values and priorities, together with practitioner insights, were central to the development of a nurse-led model of care.
IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE
The co-designed nurse-led model of care for contraception and medication abortion is one strategy to increase access to these essential reproductive health services, particularly in rural areas, while providing an opportunity for nurses to work to their full scope of practice.
IMPACT
Nurse-led care has gained global recognition as an effective strategy to promote equitable access to sexual and reproductive healthcare. Still, nurse-led contraception and abortion have yet to be implemented andevaluated in Australian general practice. This study will inform the model of care to be implemented and evaluated as part of the ORIENT trial to be completed in 2025.
REPORTING METHOD
Reported in line with the Standards for Reporting Qualitative Research (SRQR) checklist.
PATIENT OR PUBLIC CONTRIBUTION
Two consumer representatives contributed to the development of the co-design methodology as members of the ORIENT Intervention Advisory Group Governance Committee.
PubMed: 38953531
DOI: 10.1111/jan.16299 -
Research in Nursing & Health Jul 2024Adolescent health research with biomarker data collection is limited due to difficulties in recruiting and engaging this age group. Thus, successful recruitment,...
Adolescent health research with biomarker data collection is limited due to difficulties in recruiting and engaging this age group. Thus, successful recruitment, engagement, and retention of adolescents in translational research are necessary to elucidate factors influencing mental and physical health conditions, uncover novel biomarkers, and expand prevention and treatment options. This paper describes strategies for effective recruitment and retention of adolescents in a research study, using a project examining depressive symptoms and the microbiome to illustrate these approaches. This cross-sectional study collected electronic self-reported survey data and self-collected biospecimens (stool and salivary samples) from adolescents 13-19 years old. All but two participants completed the questionnaires, with few missing responses. 94% provided at least one salivary sample and 89% supplied a stool sample. Participants were able to adhere to the study instructions. Using a participant-centered approach, our study successfully recruited and engaged the targeted 90 participants in self-collection of electronic survey data and biospecimens. Successful strategies of recruitment and retention included: 1) on-site clinic recruitment by research team, 2) active involvement of parents as appropriate, 3) use of electronic surveys and self-collection of biospecimens to foster control and ease of participation while addressing privacy concerns, 4) noninvasive collection of data on biospecimen, 5) frequent texting to communicate with participants, 6) flexibility in the pickup and transferring of biospecimens to accommodate adolescent schedules, 7) developmentally appropriate research, 8) participant reimbursement, and 9) sensitivity toward discussing stool sample materials. As a result of these strategies, adolescent participation in the research proved feasible.
PubMed: 38953164
DOI: 10.1002/nur.22412 -
Harm Reduction Journal Jul 2024Deaths due to drug overdose are an international issue, causing an estimated 128,000 global deaths in 2019. Scotland has the highest rate of drug-related deaths in...
BACKGROUND
Deaths due to drug overdose are an international issue, causing an estimated 128,000 global deaths in 2019. Scotland has the highest rate of drug-related deaths in Europe, with those in the most deprived areas at greater risk than those in affluent areas. There is a paucity of research on digital solutions, particularly from the perspective of those who use drugs who additionally access harm reduction and homelessness support services. The Digital Lifelines Scotland programme (DLS) provides vulnerable people who use/d drugs with digital devices to connect with services.
METHODS
This paper reports on the evaluation of the DLS from the perspective of service users who accessed services for those at risk of drug-related harms. A mixed methods approach was used including an online-survey (n = 19) and semi-structured interviews (n = 21). Survey data were analysed descriptively and interview data through inductive coding, informed by the Technology, People, Organisations and Macroenvironmental factors (TPOM) framework, to investigate the use, access, and availability of devices, and people's experiences and perceptions of them.
RESULTS
Most participants lived in social/council housing (63.2%, n = 12), many lived alone (68.4%, n = 13). They were mainly over 40 years old and lived in a city. Participants described a desire for data privacy, knowledge, and education, and placed a nascent social and personal value on digital devices. Participants pointed to the person-centred individuality of the service provision as one of the reasons to routinely engage with services. Service users experienced an increased sense of value and there was a palpable sense of community, connection and belonging developed through the programme, including interaction with services and devices.
CONCLUSIONS
This paper presents a unique perspective which documents the experiences of service users on the DLS. Participants illustrated a desire for life improvement and a collective and individual feeling of responsibility towards themselves and digital devices. Digital inclusion has the potential to provide avenues by which service users can safely and constructively access services and society to improve outcomes. This paper provides a foundation to further cultivate the insight of service users on digital solutions in this emerging area.
Topics: Humans; Scotland; Harm Reduction; Female; Male; Adult; Digital Technology; Middle Aged; Drug Overdose; Drug Users; Young Adult; Ill-Housed Persons; Substance-Related Disorders; Surveys and Questionnaires
PubMed: 38951880
DOI: 10.1186/s12954-024-01012-y -
BMC Public Health Jun 2024Many women in low- and middle-income countries, including Kenya, access antenatal care (ANC) late in pregnancy. Home pregnancy testing can enable women to detect...
BACKGROUND
Many women in low- and middle-income countries, including Kenya, access antenatal care (ANC) late in pregnancy. Home pregnancy testing can enable women to detect pregnancy early, but it is not widely available. Our study explored the acceptability and potential of home pregnancy testing delivered by community health volunteers (CHV) on antenatal care initiation in rural Kenya.
METHODS
This study was part of a public health intervention to improve uptake and quality of ANC. Between November and December 2020, we conducted 37 in-depth interviews involving women who tested positive or negative for a urine pregnancy test provided by CHVs; CHVs and their supervisors involved in the delivery of the pregnancy tests; facility healthcare workers; and key informants. Using Sekhon et al.'s framework of acceptability, the interviews explored participants' perceptions and experiences of home pregnancy testing, including acceptability, challenges, and perceived effects on early ANC uptake. Data were analysed thematically in NVivo12 software.
RESULTS
Home pregnancy testing was well-received by women who trusted test results and appreciated the convenience and autonomy it offered. Adolescents cherished the privacy, preferring home testing to facility testing which could be a stigmatising experience. Testing enabled earlier pregnancy recognition and linkage to ANC as well as reproductive decision-making for those with undesired pregnancies. Community delivery of the test enhanced the reputation and visibility of the CHVs as credible primary care providers. CHVs in turn were motivated and confident to deliver home pregnancy testing and did not find it as an unnecessary burden; instead, they perceived it as a complement to their work in providing ANC in the community. Challenges identified included test shortages, confidentiality and safeguarding risks, and difficulties accessing facility-based care post-referral. Newly identified pregnant adolescents hesitated to seek ANC due to stigma, fear of reprimand, unwanted parental notification, and perceived pressure from healthcare workers to keep the pregnancy.
CONCLUSION
Home pregnancy testing by CHVs can improve early ANC initiation in resource-poor settings. Mitigating privacy, confidentiality, and safeguarding concerns is imperative. Additional support for women transitioning from pregnancy identification to ANC is essential to ensure appropriate care. Future research should focus on integrating home pregnancy testing into routine community health services.
Topics: Humans; Female; Kenya; Pregnancy; Prenatal Care; Adult; Patient Acceptance of Health Care; Adolescent; Young Adult; Rural Population; Pregnancy Tests; Community Health Workers; Qualitative Research; Interviews as Topic; Home Care Services
PubMed: 38951787
DOI: 10.1186/s12889-024-19254-7 -
JCO Clinical Cancer Informatics Jun 2024There has been growing interest in the use of real-world data (RWD) to address clinically and policy-relevant (research) questions that cannot be answered with data from... (Review)
Review
There has been growing interest in the use of real-world data (RWD) to address clinically and policy-relevant (research) questions that cannot be answered with data from randomized controlled trials (RCTs) alone. This is, for example, the case in rare malignancies such as sarcomas as limited patient numbers pose challenges in conducting RCTs within feasible timeliness, a manageable number of collaborators, and statistical power. This narrative review explores the potential of RWD to generate real-world evidence (RWE) in sarcoma research, elucidating its application across different phases of the patient journey, from prediagnosis to the follow-up/survivorship phase. For instance, examining electronic health records (EHRs) from general practitioners (GPs) enables the exploration of consultation frequency and presenting symptoms in primary care before a sarcoma diagnosis. In addition, alternative study designs that integrate RWD with well-designed observational RCTs may offer relevant information on the effectiveness of clinical treatments. As, especially in cases of ultrarare sarcomas, it can be an extreme challenge to perform well-powered randomized prospective studies. Therefore, it is crucial to support the adaptation of novel study designs. Regarding the follow-up/survivorship phase, examining EHR from primary and secondary care can provide valuable insights into identifying the short- and long-term effects of treatment over an extended follow-up period. The utilization of RWD also comes with several challenges, including issues related to data quality and privacy, as described in this study. Notwithstanding these challenges, this study underscores the potential of RWD to bridge, at least partially, gaps between evidence and practice and holds promise in contributing to the improvement of sarcoma care.
Topics: Humans; Sarcoma; Electronic Health Records; General Practitioners; Data Collection; Clinical Trials as Topic; Prospective Studies
PubMed: 38950319
DOI: 10.1200/CCI.24.00054