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.

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.

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.

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.

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.

Remote Technologies and Filial Obligations at a Distance: New Opportunities and Ethical Challenges.

The coupled growth of population aging and international migration warrants attention on the methods and solutions available to adult children living overseas to provide distance caregiving for their aging parents. Despite living apart from their parents, the transnational informal care literature has indicated that first-generation immigrants remain committed to carry out their filial caregiving obligations in extensive and creative ways. With functions to remotely access health information enabled by emergency, wearable, motion, and video sensors, remote monitoring technologies (RMTs) may thus also allow these international migrants to be alerted in sudden changes and remain informed of their parent's state of health. As technological solutions for caregiving, RMTs could allow independent living for older persons while any unusual deviations from normal health patterns are detected and appropriately supported. With a vignette of a distance care arrangement, we engage with concepts such as filial piety, in-absentia caregiving distress, and the social exchange theory, as well as the upholding of shifting cultural ideals to illustrate the complex dynamic of the satisfaction and quality of the informal caregiving relationship. This paper extends the traditional ethical issues in technology-aided caregiving, such as autonomy, privacy, and justice, to be considered within the context of distance care. We also posit newer ethical considerations such as consent in power imbalances, harm to caregivers, and stigma. These known and new ethical issues aim to encourage further ethically conscious design and use of RMTs to support distance care for older persons.

Rethinking advanced motherhood: a new ethical narrative.

The aim of the study is to rethink the ethics of advanced motherhood. In the literature, delayed childbearing is usually discussed in the context of reproductive justice, and in relationship to ethical issues associated with the use and risk of assisted reproductive technologies. We aim to go beyond these more "traditional" ways in which reproductive ethics is framed by revisiting ethics itself through the lens of the figure of the so-called "older" mother. For this purpose, we start by exploring some of the deep seated socio-cultural discourses in the context of procreation: ageism, ableism and the widespread bias towards geneticism and pronatalism. Afterwards, we provide a critical overview of the key arguments against or in support of advanced motherhood. We then briefly discuss how entrenchment by both sides has produced an impasse in the debate on the ethics of advanced motherhood and proceed by arguing that it is fundamental to bring about a change in this narrative. For this purpose, we will revisit the feminist usage of the concept of vulnerability which will allow us both to criticize culturally prescribed norms about motherhood and to address the painful reality of age-related fertility decline. In the last section, we argue that instead of defining "older" motherhood as an ethical problem, we should problematize the fact that female reproductive ageing is an understudied and ill-sourced topic. We believe that allocating resources to research to better understand female reproductive ageing is not only ethically permissible, but might even be ethically desirable.

Academic freedom under siege.

This paper describes a global pattern of declining academic freedom, often driven by powerful political interference with core functions of academic communities. It argues that countering threats to academic freedom requires doubling down on ethics, specifically standards of justice and fairness in pursuing knowledge and assigning warrant to beliefs. Using the example of the selection of a Qatari university to host the 2024 World Congress of Bioethics, the authors urge fairness towards diverse groups over time and efforts to counter injustices that conferences generate.

Stigma management during reintegration of older incarcerated adults with mental health issues: A qualitative analysis.

INTRODUCTION: The number of older prisoners with mental health issues released from prisons and forensic psychiatric institutions is rising. Their successful integration is important due to its implications for the public's safety and the individual's health and well-being. However, reintegration efforts are hampered due to the double stigma attached to 'mental illness' and 'incarceration history'. To alleviate the burden of such stigma, affected persons and their social networks employ stigma management strategies. This study sought to investigate the stigma management strategies of mental health professionals supporting older incarcerated adults with mental health issues in their reintegration process. METHODS: Semi-structured interviews with 63 mental health professionals from Canada and Switzerland were carried out as part of the overall project. To address the reintegration topic, data from 18 interviews were used. Data analysis followed the thematic analysis approach. RESULTS: Mental health professionals emphasized the double stigmatization of their patients which impaired their quest for housing. Lengthy searches for placement frequently resulted in patients' unnecessary long stays in forensic programs. Nevertheless, participants outlined that they were at times successful in finding appropriate housing for their patients due to the use of certain stigma management strategies. They stated that they, first, established initial contacts with outside institutions, second, educated them about stigmatizing labels and, third, provided ongoing collaboration with public institutions. DISCUSSION: Incarcerated persons with mental health issues face double stigmatization that affects their reentry process. Our findings are interesting as they illustrate ways in which stigma can be reduced, and how the reentry process can be streamlined. Future research should include the perspectives of incarcerated adults with mental health issues to shed more light on the various options that they seek for successful reintegration after imprisonment.

Motivation and training needs of prison healthcare professionals: findings from a qualitative study.

Health care in prison is a challenging task. The conditions of imprisonment create distinct difficulties for those providing health care in this setting. These particular circumstances have led to a shortage of quality professionals, working for the health of imprisoned people. The aim of this study is to elaborate reasons for healthcare professionals to work in a prison environment. The main research question is: why do healthcare workers choose to work in prisons? Furthermore, our study identifies training needs in various fields. Interview data that comes from a national project carried out in Switzerland and three other relatively wealthy countries were analyzed using content analysis. One-on-one, semi structured interviews were designed and conducted with professionals working in prison context. A total of 105 interviews were carried out and for this work 83 of them were analyzed and coded into themes responding to the study aim. Most participants chose to work in prison either because of practical reasons, as many reported various forms of contact with the studied prison environment at a younger age, or because of intrinsic reasons, including among others, having the wish to change the system of healthcare in prisons. Even though the education of the participants varied greatly, a lack of specialist training was expressed by many health care professions as an important factor. This study points out the need for more specific training programs for healthcare workers in prison and provides suggestions to ameliorate the recruitment and education for future prison health care workers.

Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland.

Introduction: Ensuring that the health data infrastructure and governance permits an efficient secondary use of data for research is a policy priority for many countries. Switzerland is no exception and many initiatives have been launched to improve its health data landscape. The country now stands at an important crossroad, debating the right way forward. We aimed to explore which specific elements of data governance can facilitate - from ethico-legal and socio-cultural perspectives - the sharing and reuse of data for research purposes in Switzerland. Methods: A modified Delphi methodology was used to collect and structure input from a panel of experts via successive rounds of mediated interaction on the topic of health data governance in Switzerland. Results: First, we suggested techniques to facilitate data sharing practices, especially when data are shared between researchers or from healthcare institutions to researchers. Second, we identified ways to improve the interaction between data protection law and the reuse of data for research, and the ways of implementing informed consent in this context. Third, we put forth ideas on policy changes, such as the steps necessary to improve coordination between different actors of the data landscape and to win the defensive and risk-adverse attitudes widespread when it comes to health data. Conclusions: After having engaged with these topics, we highlighted the importance of focusing on non-technical aspects to improve the data-readiness of a country (e.g., attitudes of stakeholders involved) and of having a pro-active debate between the different institutional actors, ethico-legal experts and society at large.

Crime hierarchy, victimization and coping results of a qualitative study on the older incarcerated Person's mental health in Switzerland.

BACKGROUND: Incarcerated persons rank themselves according to the crime they have committed. Due to which, those lower in this hierarchy (e.g., paedophiles) are bullied. The goal of this paper was to better knowledge on older incarcerated adults' experiences of crime and social hierarchy in prisons. METHODS: Our results comprise data from 50 semi-structured interviews with older incarcerated persons. Data was assessed following thematic analysis. RESULTS: Our research showed that crime hierarchy occurs in prison and is recognized by older incarcerated individuals. Also, a social hierarchy based on various characteristics (e.g., ethnicity, education, language, mental health) is established within detention centres. This hierarchy is put forth by all persons deprived of liberty, but mostly by the ones at the bottom of the crime hierarchy, thus using it to portray themselves as better human beings than other incarcerated adults. They use the social hierarchy to cope with bullying whilst exhibiting coping mechanisms, such as the narcissistic facade. A concept we put forth as a novel idea. DISCUSSION: Our results show that crime hierarchy prevails in prison. Also, we explain the social hierarchy based on ethnicity, education, and other characteristics. Hence, being a victim of bullies, make lower-ranked (on the crime hierarchy) persons resort to social hierarchy to portray themselves as better individuals. This should not be considered as a personality disorder, but rather a narcissistic facade.

Mapping ethical issues in the use of smart home health technologies to care for older persons: a systematic review.

BACKGROUND: The worldwide increase in older persons demands technological solutions to combat the shortage of caregiving and to enable aging in place. Smart home health technologies (SHHTs) are promoted and implemented as a possible solution from an economic and practical perspective. However, ethical considerations are equally important and need to be investigated. METHODS: We conducted a systematic review according to the PRISMA guidelines to investigate if and how ethical questions are discussed in the field of SHHTs in caregiving for older persons. RESULTS: 156 peer-reviewed articles published in English, German and French were retrieved and analyzed across 10 electronic databases. Using narrative analysis, 7 ethical categories were mapped: privacy, autonomy, responsibility, human vs. artificial interactions, trust, ageism and stigma, and other concerns. CONCLUSION: The findings of our systematic review show the (lack of) ethical consideration when it comes to the development and implementation of SHHTs for older persons. Our analysis is useful to promote careful ethical consideration when carrying out technology development, research and deployment to care for older persons. REGISTRATION: We registered our systematic review in the PROSPERO network under CRD42021248543.

Impact of structural racism on inclusion and diversity in precision oncology: A scoping and critical review of the literature.

Inclusion and diversity in precision oncology are essential in reducing cancer disparities among racial and ethnic groups. However, present studies have favored the recruitment and participation of Whites, with limited applicability of their results to minority groups. Many reasons for their underrepresentation are downstream manifestations of structural racism. Therefore, this scoping review provides a precise mapping of recruitment and participation barriers for minorities in precision oncology that are associated with structural racism, including a critical appraisal of how disciplinary norms, paradigms, and tools used therein could inadvertently contribute to unforeseen inclusion and diversity challenges. Empirical and theoretical publications from Web of Science and PubMed were searched and analyzed to identify recruitment and participation barriers for minorities in precision oncology. In addition, using the public health critical race praxis (PHCRP) as guiding analytical framework, empirical studies were analyzed to identify unforeseen barriers resulting from simplification processes, assumptions, norms, paradigms, and tools used during the research process. One-hundred thirty-five barriers to recruitment and participation were identified or reported in included publications. They were subsequently categorized as being a manifestation of one of the following forms of racism, namely internalized, interpersonal, institutional, and structural racism. The PCHRP analysis revealed four additional factors to be considered in precision oncology studies in ensuring appropriate representation of their study populations. Future interventions aimed at reducing health disparities should focus predominantly on barriers associated with structural and institutional racism, which should then have ripple effects on other forms of racism. Importantly, the four factors identified through the PHCRP framework could further explain the lower participation rates of minorities in precision oncology and related activities. Therefore, they should be given due consideration by all stakeholders involved in the precision oncology ecosystem, from researchers and healthcare professionals to policy-makers, research ethics committees, and funders.

Acceptable objectives of empirical research in bioethics: a qualitative exploration of researchers' views.

BACKGROUND: This is the first qualitative study to investigate how researchers, who do empirical work in bioethics, relate to objectives of empirical research in bioethics (ERiB). We explore reasons that make some objectives more acceptable, while others are deemed less acceptable. METHODS: Using qualitative exploratory study design, we interviewed bioethics researchers, who were selected to represent different types of scholars working in the field. The interview data of 25 participants were analyzed in this paper using thematic analysis. RESULTS: From the eight objectives presented to the study participants, understanding the context of a bioethical issue and identifying ethical issues in practice received unanimous agreement. Participants also supported other objectives of ERiB but with varying degrees of agreement. The most contested objectives were striving to draw normative recommendations and developing and justifying moral principles. The is-ought gap was not considered an obstacle to ERiB, but rather a warning sign to critically reflect on the normative implications of empirical results. CONCLUSIONS: Our results show that the most contested objectives are also the more ambitious ones, whereas the least contested ones focus on producing empirical results. The potential of empirical research to be useful for bioethics was mostly based on the reasoning pattern that empirical data can provide a testing ground for elements of normative theory. Even though empirical research can inform many parts of bioethical inquiry, normative expertise is recommended to guide ERiB. The acceptability of ambitious objectives for ERiB boils down to finding firm ground for the integration of empirical facts in normative inquiry.

Deconstructing age(s): an analysis of the different conceptions of age as a legal criterion for access to assisted reproductive technologies.

Whether there should be restrictions for access to Assisted Reproductive Technologies (ART) is a matter of continuous medical, societal, and ethico-legal debate. One of the most controversial topics in this context is the use of parental age as a criterion to limit access to ART. Views are divided on whether there should be an upper age limit for one or both parents and on where such limits should be. Although this debate is centered around the issue of 'age' and although age-related limits are present in many legislations, the intrinsic ambiguity of the term `age' is largely overlooked. In this article, we build on gerontological, medical, and sociological literature on the concepts of 'age' and 'aging' to distinguish three conceptions of age that are relevant for ART regulation: the chronological, the biological, and the social-cultural one. Beyond mapping out these conceptions of age, we describe how they relate to ART and reproduction, and illustrate the advantages and disadvantages of relying on each of them as a basis for limiting ART access. Finally, we propose a template for defining legal age limits for ART access in the law, based on the refined understanding of the different conceptions of age that we outline and we discuss two potential objections to our proposal.

Care of Older Persons in Eastern Africa: A Scoping Review of Ethical Issues.

Introduction: The aging population is rapidly increasing globally, with 80% of the older population living in low- and middle-income countries. In Eastern African countries, there exists an incongruence between readiness-economically, structurally, politically, and culturally-to create a conducive environment for healthy aging, which implies public health as well as ethical concerns. The aim of this scoping review was to explore existing evidence addressing the various ethical issues in connection with elder care in the region of Eastern Africa. Methods: We searched six databases (Africa-Wide Information, AgeLine, CINHAL, MEDLINE, APA PsycInfo, and SocINDEX) to identify peer-reviewed journal articles that could meet some eligibility criteria such as being a peer-reviewed journal article written in English, having been published in any year until July 2020, and focusing on ethical issues in the care of older people aged 60 years and older from Eastern Africa. We also searched for additional evidence in the references of included papers and web-based platforms. We included 24 journal articles and analyzed them using the inductive content analysis approach. Results: The included articles represent seven (38.9%) of the 18 countries in the Eastern African region. The articles covered six ethical concerns: lack of government attention to older persons (n = 14, 58.3%), inaccessibility of health care services (n = 13, 54.2%), loneliness and isolation (n = 11, 45.8%), gender inequalities in old age (n = 9, 37.5%), mistreatment and victimization (n = 8, 33.3%), and medical errors (n = 2, 8.3%). Conclusion: This scoping review summarized ethical issues arising in relation to providing care for older persons in the Eastern African context. In light of the rapid increase in the number of older persons in this region, it is critical for governments and responsible bodies to implement and accelerate efforts promptly to generate more evidence to inform programs and policies that improve the health and wellbeing of older persons. Further research is needed to inform global health efforts that aim at improving the lives of older persons, particularly in low- and middle-income countries. Clinical Trial Registration: https://osf.io/sb8gw, identifier: 10.17605/OSF.IO/SB8GW.

Supportive needs of informal caregivers of people with amyotrophic lateral sclerosis in Switzerland: a qualitative study.

OBJECTIVE: This study explores the supportive needs of informal caregivers of people with amyotrophic lateral sclerosis (ALS) in Switzerland. METHOD: We conducted semi-structured interviews with nine informal caregivers currently providing care to a person with ALS, 14 bereaved informal caregivers, and 13 healthcare professionals. Interviews were recorded on digital audio and analysed using an inductive thematic analysis within a realist framework. RESULT: Informal caregivers discussed five themes of support needs relating to being overburdened by administrative demand, in contact with healthcare providers, home support, especially during the terminal phase, and having or lacking social support. Healthcare professionals discussed three themes of support needs of informal caregivers which related to the general institutional support for informal caregivers, their own work as caring for informal caregivers, and the challenges in healthcare for families with ALS they encountered. SIGNIFICANCE OF RESULTS: Informal caregiving for people with ALS can be demanding. This study provides evidence for improvements in supporting informal caregivers. It shows administrative needs of informal caregivers, stresses their needs regarding advance care planning early in the context of ALS, and underlines the importance of social support, be it in peer-groups or community care.

Loneliness and social isolation among the older person in a Swiss secure institution: a qualitative study.

BACKGROUND: A pandemic of loneliness is hitting the aging population. As COVID19 forced us to isolate ourselves, we are in a better position to understand consequences of social distancing. The recent literature showed that older incarcerated adults are particularly at risk of health-related complications due to isolation in the prison environment, reducing their social capital. Mental and physical health can be severely affected by loneliness and social isolation, especially in prison. METHODS: Our qualitative study investigates the view of older persons deprieved of their liberty on loneliness and social isolation pertaining to their mental health. We interviewed 57 older participants, including imprisoned individuals and forensic patients, following a semi-structured interview guide. During the data management and data analysis process, we excluded 7 interviews which were of poorer quality. Thereafter, we analyzed the remainders following a thematic approach. RESULTS: Most interviewees experience loneliness following lack of significant human relationships in prison. Making friends appears to be a challenge for all the participants, because, for one thing, they do not find people with similar interests. Also, secure institution setting aggravates isolation due to the restrictions of movement placed such as rules concerning movement between floors, hindering intimate relationship, and separation between friends. Moreover, contact with prison personnel is limited and lack social capital (e.g. trust). CONCLUSION: To our knowledge, this study is one of the first to present incarcerated persons' perspective on loneliness, social isolation and poor social capital in the Swiss prison setting. These has been reported to cause health problems both somatic and psychological. Our participants experience these deleterious factors in detention. As prisons have the possibility to become a health-promoting environment through connectedness, friendship, and trust promotion, stakeholders need to better their social capital.