Receiving and adjusting to a diagnosis of ALS: A qualitative study with informal caregivers.

OBJECTIVES: Diagnosis of amyotrophic lateral sclerosis (ALS) takes more than 1year from detection of first symptoms. The paper seeks to understand the ALS diagnostic process and adjustment from the perspective of informal caregivers. METHODS: The data stems from an interview study with 9 current and 13 bereaved informal caregivers of people with ALS in Switzerland. The interviews were analyzed using thematic analysis. RESULTS: We identified 3 key themes pertaining to ALS diagnosis. In the first theme, we present the close involvement of informal caregivers in the "diagnosis journey." Highlighted within this theme is the important role they play, which ultimately leads to diagnosis of ALS avoiding further delays. Second, we relay their perceptions on "diagnosis communication pitfalls" where they underlined empathy and planning from the part of medical professional, while communicating the terminal diagnosis of ALS. Participants' reactions and adjustments post-ALS diagnosis are described in "the aftermath of diagnosis." In this third theme, we highlight participants' shock and their need to rethink overall life plans and roles in their family. SIGNIFICANCE OF THE RESULTS: Diagnosis communication that is clear, empathetic, and adjusted to the needs of the patients as well as their caregivers is critical. More work is needed to improve diagnosis communication for ALS patients. Receiving the diagnosis of ALS leads to complete changes in life of caregivers. It is therefore necessary that medical professionals provide adequate support that allows them to plan for their future.

Multiple promoter and enhancer differences likely contribute to augmented G6PC2 expression in human versus mouse pancreatic islet alpha cells.

G6PC2 encodes a glucose-6-phosphatase catalytic subunit that opposes the action of glucokinase in pancreatic islets, thereby modulating the sensitivity of insulin and glucagon secretion to glucose. In mice, G6pc2 is expressed at ~20-fold higher levels in ß-cells than in α-cells, whereas in humans G6PC2 is expressed at only ~5-fold higher levels in ß-cells. We therefore hypothesize that G6PC2 likely influences glucagon secretion to a greater degree in humans. With a view to generating a humanized mouse that recapitulates augmented G6PC2 expression levels in α-cells, we sought to identify the genomic regions that confer differential mouse G6pc2 expression in α-cells versus ß-cells as well as the evolutionary changes that have altered this ratio in humans. Studies in islet-derived cell lines suggest that the elevated G6pc2 expression in mouse ß-cells versus α-cells is mainly due to a difference in the relative activity of the proximal G6pc2 promoter in these cell types. Similarly, the smaller difference in G6PC2 expression between α-cells and ß-cells in humans is potentially explained by a change in relative proximal G6PC2 promoter activity. However, we show that both glucocorticoid levels and multiple differences in the relative activity of eight transcriptional enhancers between mice and humans likely contribute to differential G6PC2 expression. Finally, we show that a mouse-specific non-coding RNA, Gm13613, whose expression is controlled by G6pc2 enhancer I, does not regulate G6pc2 expression, indicating that altered expression of Gm13613 in a humanized mouse that contains both the human promoter and enhancers should not affect G6PC2 function.

Practices and Barriers in Developing and Disseminating Plain-Language Resources Reporting Medical Research Information: A Scoping Review.

BACKGROUND: The intent of plain-language resources (PLRs) reporting medical research information is to advance health literacy among the general public and enable them to participate in shared decision-making (SDM). Regulatory mandates coupled with academic and industry initiatives have given rise to an increasing volume of PLRs summarizing medical research information. However, there is significant variability in the quality, format, readability, and dissemination channels for PLRs. In this scoping review, we identify current practices, guidance, and barriers in developing and disseminating PLRs reporting medical research information to the general public including patients and caregivers. We also report on the PLR preferences of these intended audiences. METHODS: A literature search of three bibliographic databases (PubMed, EMBASE, Web of Science) and three clinical trial registries (NIH, EMA, ISRCTN registry) was performed. Snowball searches within reference lists of primary articles were added. Articles with PLRs or reporting topics related to PLRs use and development available between January 2017 and June 2023 were identified. Evidence mapping and synthesis were used to make qualitative observations. Identified PLRs were quantitatively assessed, including temporal annual trends, availability by field of medicine, language, and publisher types. RESULTS: A total of 9116 PLRs were identified, 9041 from the databases and 75 from clinical trial registries. The final analysis included 6590 PLRs from databases and 72 from registries. Reported barriers to PLR development included ambiguity in guidance, lack of incentives, and concerns of researchers writing for the general public. Available guidance recommendations called for greater dissemination, increased readability, and varied content formats. Patients preferred visual PLRs formats (e.g., videos, comics), which were easy to access on the internet and used short jargon-free text. In some instances, older audiences and more educated readers preferred text-only PLRs. Preferences among the general public were mostly similar to those of patients. Psychology, followed by oncology, showed the highest number of PLRs, predominantly from academia-sponsored research. Text-only PLRs were most commonly available, while graphical, digital, or online formats were less available. Preferred dissemination channels included paywall-free journal websites, indexing on PubMed, third-party websites, via email to research participants, and social media. CONCLUSIONS: This scoping review maps current practices, recommendations, and patients' and the general public's preferences for PLR development and dissemination. The results suggest that making PLRs available to a wider audience by improving nomenclature, accessibility, and providing translations may contribute to empowerment and SDM. Minimizing variability among available guidance for PLR development may play an important role in amplifying the value and impact of these resources.

Plain-language resources (PLRs) can help people understand medical research information. This will allow them to make informed decisions about their health. However, PLRs vary in quality, format, and ways in which they are shared. In this study, researchers looked at how PLRs are made and publicly shared. They also studied what makes PLRs useful for the public and patients. Creating PLRs is not easy because of unclear guidelines on writing for the public. Using different formats and languages can make PLRs readable. Patients preferred PLRs as videos and comics. Older and educated readers liked text-only PLRs. The fields of psychology and oncology had the highest number of PLRs. Text-only PLRs were more common than digital or online formats. PLRs should be easily and freely accessible. Open-access journal websites, PubMed, third-party websites, email, and social media can be used to share PLRs. This study showed that PLRs can be helpful, but there are challenges in creating and sharing them. Good PLRs can inform patients and help them make better health-related decisions.

No playing around with robots? Ambivalent attitudes toward the use of Paro in elder care.

This paper explores the ways in which health care professionals, family carers, and older persons expressed attitudes and opinions on using Paro, a social robot designed to stimulate patients with dementia. Thereafter, we critically evaluate existing prejudicial views toward Paro users to provide recommendations for its future use. Using an exploratory qualitative interview method, we recruited a total of 67 participants in Switzerland. They included 23 care professionals, 17 family carers, and 27 older persons. Data obtained were analyzed thematically. Study findings present general agreement that Paro is an appealing and beneficial social robot, but it is not a tool that everyone feels comfortable with. Because it is perceived as "child play," it would be demeaning for competent adults to play with such things. Consequently, Paro is appropriate only for persons with dementia. These findings brought forth ethical concerns about deception, infantilization, and respecting older persons' dignity. The idea of who is an appropriate Paro user led to our discussions on predicting future Paro users. The meaning of using social robotics in nursing homes can be conditioned by a rigid interpretation of adulthood and playful behavior. To protect future selves when one is living with dementia from prejudices, it may be useful for older persons and their loved ones to plan their future care situations to ensure that they are treated in accordance with their delineated decisions.

Gerontechnologies, ethics, and care phases: Secondary analysis of qualitative interviews.

BACKGROUND: Gerontechnologies are increasingly used in the care for older people. Many studies on their acceptability and ethical implications are conducted, but mainly from the perspective of principlism. This narrows our ethical gaze on the implications the use of these technologies have. RESEARCH QUESTION: How do participants speak about the impact that gerontechnologies have on the different phases of care, and care as a process? What are the moral implications from an ethic of care perspective? RESEARCH DESIGN: Secondary analysis of semi-structure interviews, whose segments on specific technologies were analysed through reflexive thematic analysis. PARTICIPANTS AND RESEARCH CONTEXT: Sixty-seven Swiss stakeholders involved in the use of gerontechnologies, including professional caregivers, informal caregivers, and older persons themselves. ETHICAL CONSIDERATIONS: The research study was evaluated by the Ethics Commission of Northwest and Central Switzerland (EKNZ). All participants received an information document before the interview date detailing the purpose, procedure, and anonymization measures. After explaining the study during the agreed upon interview time and upon receiving their written informed consent, the interview process began. FINDINGS/RESULTS: Four themes are identified: Identifying care needs, Taking responsibility, Hands-on work, Responding to care. As part of these themes, many codes highlighting the ambivalent impact of gerontechnologies are created, ranging from 'Expanded capacity for…identifying care needs' to 'Create new & (un)necessary…hands-on work'. The moral implications of these results from the care ethics perspective are discussed, through the ethical elements of: attentiveness, responsibility, competence, and responsiveness. CONCLUSIONS: The moral implications of gerontechnologies on care phases from the care ethics perspective open up several questions on whether they actually help give care a central role in social life and provide more competent care.

Informing existing technology acceptance models: a qualitative study with older persons and caregivers.

New technologies can help older persons age in place and support their caregivers. However, they need to be accepted by the end-users to do so. Technology acceptance models, such as TAM and UTAUT and their extensions, use factors like performance expectancy and effort expectancy to explain acceptance. Furthermore, they are based on quantitative methods. Our qualitative study investigates factors fostering and hindering acceptance among older persons and their caregivers for a variety of assistive technologies, including wearables, ambient sensors at home with and without cameras and social companion robots. The goal of this paper is twofold: On the one hand, it investigates the factors of technology acceptance models in a qualitative setting. On the other hand, it informs these models with aspects currently overlooked by them. The results reveal that performance expectancy and effort expectancy are relevant for acceptance. We also find that reliability, anxiety around technology and different social aspects have an influence on acceptance of assistive technology in aged care for all end-user groups. Our findings can be used to update current technology acceptance models and provide in-depth knowledge about the currently used factors.

Benefits and barriers associated with the use of smart home health technologies in the care of older persons: a systematic review.

BACKGROUND: Smart home health technologies (SHHTs) have been discussed in the frame of caregiving to enable aging-in-place and independence. A systematic review was conducted in accordance with the PRISMA guidelines to gather the up-to-date knowledge on the benefits and barriers of using SHHTs in the care of older persons from the perspective of older persons and their caregivers. METHODS: Ten electronic databases were reviewed for empirical peer-reviewed literature published from 01.01.2000 to 31.12.2021 in English, German, and French reporting on experimental, qualitative, quantitative, and other empirical study designs were included. Included studies contained user-feedback from older persons over 65 years of age or their caregivers (formal and informal). We used an extraction document to collect relevant data from all included studies and applied narrative synthesis to analyze data related to benefits and barriers of SHHTs. RESULTS: 163 empirical peer-reviewed articles were included, the majority of those published between 2014 and 2021. Five first-order categories of benefits and five of barriers were found with individual sub-themes. SHHTs could be useful in the care context where continuous monitoring is needed. They improve self-management and independent living of older persons. Barriers currently exist with respect to ease of usability, social acceptance, and cost. CONCLUSIONS: SHHTs could be useful in the care context but are not without concerns. Researchers and policy makers can use the information as a starting point to better understand how the roles and outcomes of SHHTs could be improved for the care of older persons, while caregivers of older adults could use our findings to comprehend the scope of SHHTs and to decide when and where such technology could best address their individual family needs. Limitations lie in the possible exclusion of relevant articles published outside the inclusion criteria as well as the fact that due to digital divide, our review represents opinions of those who could and wanted to participate in the included 163 studies. TRIAL REGISTRATION: This review has been registered as PROSPERO CRD42021248543. A protocol was completed in March 2021 with the PRISMA-P guidance. We have extended the review period from 2000 to 2020 since the registration of the protocol to 2000-2021.

Publishing clinical trial results in plain language: a clash of ethical principles?

Plain language resources (PLR) are lay summaries of clinical trial results or plain language summaries of publications, in digital/visual/language formats. They aim to provide accurate information in jargon-free, and easy-to-understand language that can meet the health information needs of the general public, especially patients and caregivers. These are typically developed by the study sponsors or investigators, or by national public health bodies, research hospitals, patient organizations, and non-profit organizations. While the usefulness of PLR seems unequivocal, they have never been analyzed from the perspective of ethics. In this commentary, we do so and reflect on whether PLR are categorically advantageous or if they solve certain issues but raise new problems at the same time. Ethical concerns that PLR can potentially address include but are not limited to individual and community level health literacy, patient empowerment and autonomy. We also highlight the ethical issues that PLR may potentially exacerbate, such as fair balanced presentation and interpretation of medical knowledge, positive publication bias, and equitable access to information. PLR are important resources for patients, with promising implications for individual as well as community health. However, they require appropriate oversight and standards to optimize their potential value. Hence, we also highlight recommendations and best practices from our reading of the literature, that aim to minimize these biases.

Plain language resources (PLR) are a way to make medical research information easier for everyone to understand.They can be summaries of clinical trial results, articles, or presentations. PLR can also be made as videos, brochures, or infographics.They can help patients understand their health better and take care of themselves. However, there are some things to be careful about.PLR may only report the good results and not mention the negative ones, which could be biased.Also, some people with disabilities or who don't speak the language well might have a hard time understanding PLR.To make sure PLR are helpful and fair, there should be standard guidelines for how they are made and shared. This will make sure that PLR are useful and don't cause any problems.

Building a family at advanced parental age: a systematic review on the risks and opportunities for parents and their offspring.

STUDY QUESTION: What is the existing empirical literature on the psychosocial health and wellbeing of the parents and offspring born at an advanced parental age (APA), defined as 40 years onwards? SUMMARY ANSWER: Although the studies show discrepancies in defining who is an APA parent and an imbalance in the empirical evidence for offspring, mothers, and fathers, there is a drive towards finding psychotic disorders and (neuro-)developmental disorders among the offspring; overall, the observed advantages and disadvantages are difficult to compare. WHAT IS KNOWN ALREADY: In many societies, children are born to parents at advanced ages and there is rising attention in the literature towards the consequences of this trend. STUDY DESIGN SIZE DURATION: The systematic search was conducted in six electronic databases (PubMed including Medline, Embase, Scopus, PsycInfo, CINAHL, and SocINDEX) and was limited to papers published between 2000 and 2021 and to English-language articles. Search terms used across all six electronic databases were: ('advanced parental age' OR 'advanced maternal age' OR 'advanced paternal age' OR 'advanced reproductive age' OR 'late parent*' OR 'late motherhood' OR 'late fatherhood') AND ('IVF' OR 'in vitro fertilization' OR 'in-vitro-fertilization' OR 'fertilization in vitro' OR 'ICSI' OR 'intracytoplasmic sperm injection' OR 'reproductive techn*' OR 'assisted reproductive technolog*' OR 'assisted reproduction' OR 'assisted conception' OR 'reproduction' OR 'conception' OR 'birth*' OR 'pregnan*') AND ('wellbeing' OR 'well-being' OR 'psycho-social' OR 'social' OR 'ethical' OR 'right to reproduce' OR 'justice' OR 'family functioning' OR 'parental competenc*' OR 'ageism' OR 'reproductive autonomy' OR 'outcome' OR 'risk*' OR 'benefit*'). PARTICIPANTS/MATERIALS SETTING METHODS: The included papers were empirical studies in English published between 2000 and 2021, where the study either examined the wellbeing and psychosocial health of parents and/or their children, or focused on parental competences of APA parents or on the functioning of families with APA parents. A quality assessment of the identified studies was performed with the QATSDD tool. Additionally, 20% of studies were double-checked at the data extraction and quality assessment stage to avoid bias. The variables sought were: the geographical location, the year of publication, the methodological approach, the definitions of APA used, what study group was at the centre of the research, what research topic was studied, and what advantages and disadvantages of APA were found. MAIN RESULTS AND THE ROLE OF CHANCE: A total number of 5403 articles were identified, leading to 2543 articles being included for title and abstract screening after removal of duplicates. This resulted in 98 articles included for a full-text reading by four researchers. Ultimately, 69 studies were included in the final sample. The key results concerned four aspects relevant to the research goals. (i) The studies showed discrepancies in defining who is an APA parent. (ii) There was an imbalance in the empirical evidence produced for different participant groups (mothers, fathers, and offspring), with offspring being the most studied study subjects. (iii) The research topics studied underlined the increased risks of neuro-developmental and psychotic disorders among offspring. (iv) The observed advantages and disadvantages were varied and could not be compared, especially for the offspring of APA parents. LIMITATIONS REASONS FOR CAUTION: Only English-language studies, published between 2000 and 2021, found in the above-mentioned databases were considered for this review. WIDER IMPLICATIONS OF THE FINDINGS: More research is necessary to understand the risks and benefits of building a family at an APA for the offspring when they reach adulthood. Furthermore, studies that explore the perspective of older fathers and older parents from non-Western societies would be highly informative. STUDY FUNDING/COMPETING INTERESTS: The writing of this manuscript was permitted by financial support provided by the Swiss National Science Foundation (Weave/Lead Agency funding program, grant number 10001AL_197415/1, project title 'Family Building at Advanced Parental Age: An Interdisciplinary Approach'). The funder had no role in the drafting of this manuscript and the views expressed therein are those of the authors. The authors have no conflicts of interest. REGISTRATION NUMBER: This systematic review is registered in Prospero: CRD42022304564.