Autonomy Of People Research Articles

The experience of abortion for Cook Islands women: exploring the socio-cultural dimensions of abortion safety

Abortion is significantly restricted by law in most Pacific Island countries, impacting the rights, health and autonomy of people who experience pregnancy. We undertook qualitative research between February and August 2022 on Rarotonga, Cook Islands, where abortion is illegal under most circumstances. We conducted interviews with women who had accessed or tried to access abortion services; people who had supported women to access abortion services; health workers; and advocates to understand their experiences regarding abortion. We conducted focus groups to explore broader social perceptions and experiences of sexual and reproductive health and rights, including abortion. Participants described their abortion decisions and methods, and their negotiation of the personal context of their sexual behaviours, pregnancies, and abortions relative to their socio-cultural context and values. As defined by the World Health Organization, safe abortion relates to the methods and equipment used and the skills of the abortion provider. We argue for an expansion of this definition to consider inclusion of reference to individuals’ ‘abortion safety nets’ as the sum of their access to financial, political, health care and socio-cultural resources. These safety nets are shaped by discourses related to abortion and socio-cultural support and values, impacting physical, emotional, psychological, social and spiritual health.

Care as tyranny: Miscellaneous observations

AbstractThis article focuses on undesired care transgressions that violate the intimacy, autonomy, and humanity of patients, pregnant women, and older people. Undesired care that hurts patients is referred to as “violence,” “abuse,” and “dehumanization.” This can take different forms: physical, verbal, and emotional, as well as deliberate negligence. We have dubbed this type of transgressive care “tyranny.” The data for this article are derived from a wide variety of sources: research articles, personal documents sharing care experiences, ethnographic observations, novels, a celebrated movie, and a TV series. Five conceptual clarifications of the occurrence of tyrannical care are proposed in the concluding discussion.

Advancing arts philanthropy practices for well‐being

AbstractIndividual and collective well‐being is a global priority. Arts philanthropy can play a significant role in enhancing well‐being, both due to the direct impact of the arts on well‐being and the contribution of philanthropy to the well‐being of both donors and recipients. Despite this widely held belief, the current state of arts philanthropy highlights the need for advancements in its practices for the benefit of both givers and receivers. Through a review of previous studies, we propose a conceptual model to support the success of arts philanthropy by addressing four key elements: who, what, how, and why. Arts philanthropic practices should: (1) Identify the involved stakeholders and their interests within the context of multi‐sided markets; (2) Design and execute engaging cultural experiences as part of their offerings; (3) Incorporate the four ethical principles—namely, “Do no harm,” “Do as much good as possible,” “Respect people's autonomy,” and “Treat people with fairness”—into their decision‐making processes; (4) Utilize valid and reliable measures of well‐being.

Association between Comorbidity Indices and Functional Autonomy in Individuals with Cognitive Impairment: A Systematic Review.

This systematic review aimed to examine whether higher comorbidity burden, as assessed by comorbidity indices, was associated with a functional autonomy decline in individuals with cognitive impairment. The search was conducted in the following databases: PubMed/MEDLINE, ScienceDirect, Cochrane, and Embase. Both cross-sectional and longitudinal studies that examined the relationship between comorbidity indices and scales measuring activities of daily living (ADL) in individuals with cognitive impairment were included. The quality assessment tool for observational cohort and cross-sectional studies of the National Institutes of Health (NIH) was used. Overall, 12 studies were included, among which three were longitudinal. Significant association was frequently reported by cross-sectional designs (n=7 studies) and only one study reported a significant longitudinal association. This longitudinal study repeatedly assessed both comorbidity burden and functional autonomy, and considered comorbidity burden as a time-varying covariate. Considering comorbidity burden as a time varying covariate may deal with the dynamic nature of comorbidity burden over time, and conducting repeated assessments during the follow-up using both comorbidity index and ADL scales may increase their sensitivity to reliably measure comorbidity burden and functional autonomy decline over time. In conclusion, a higher comorbidity index was associated with a lower level of functional autonomy in people with cognitive impairment. This relationship seems to be dynamic over time and using comorbidity indices and ADL scales only once may not deal with the fluctuation of both comorbidity burden and functional autonomy decline. To cope with complexity of this relationship this review highlights some methodological approaches to be considered.

Does Freedom of Domestic Movement Impact Forest Loss? A Cross-National Analysis

On the one hand, previous research argues that growth in rural populations leads to forest loss from clearing trees to make room for the growing population and their farming needs. On the other hand, research is also concerned with how deforestation drives people out of rural areas, leading to overurbanization. From this work, it is clear that the movement of people has an important relationship to forest loss, but it is less clear what the autonomy of people is in this process. Put differently, more focus has been put on state-level economic and environmental factors than political factors when considering the impact of domestic migration on forest loss. Although there has been substantial work on how political factors, like democracy, impact forest loss, there is less research on how political rights, like freedom of domestic movement, may impact forest loss. To build on this research, we test the impact of freedom of domestic movement and democracy on forest loss from 2001 to 2014 for a sample of 107 low- and middle-income nations. We find support for the idea that having more freedom of movement decreases forest loss in more democratic nations compared to less democratic nations. We also find that both rural and urban population growth, among others, is associated with higher levels of forest loss. Together, our findings suggest that the freedom of domestic movement should be taken into consideration in addition to population growth from actual domestic movement when researching forest loss.

Risk and pleasure in the era of pharmacologically safe sex.

This article discusses how Pre-Exposure Prophylaxis (PrEP) and the undetectable viral load=untransmissible (UVL=U) have produced reconfigurations in the contexts of affective-sexual encounters of young gay men/men who have sex with men (MSM) living with HIV (YLHIV). In-depth interviews were conducted with nine YLHIV, aged 18 to 29, from two studies conducted in Salvador, Bahia, in 2019 and 2021. The narratives focused on unprecedented events in the prevention and treatment of HIV/AIDS, which have allowed experiences of greater intimacy and safety but also challenges and tensions in affective-sexual relationships. Different moments in the experience of living with HIV reveal different narratives of YLHIV concerning the new PrEP and UVL biotechnologies. Concerns surrounding possible HIV transmission or the obligation to reveal serology are more prominent among young people with the most recent diagnosis. In contrast, those with more extended serology experience are more comfortable and confident in the face of new technologies and their significant effects on sexual encounters. However, controversies remain regarding the moral and behavioral consequences of their use. Some YLHIV re-update concerns and bring reports about the continuity of stigma toward people living with HIV. Others emphasize the benefits of biomedical advances, opening up new interactive possibilities, including without the use of condoms, highlighting the existence of other practices, knowledge, dynamics, and ways of negotiating risk/care, with tensions in the field of sexuality itself. We reiterate the need to resume public policies in the field of HIV/AIDS beyond biomedical strategies, highlighting vulnerabilities, the dissemination of information about new HIV prevention and treatment technologies, respect for people's autonomy in their preventive choices, and the development of strategies to combat the stigma associated with HIV/AIDS.

Influence of manipulative skills on quality of life and activities of daily living in multiple sclerosis.

More than 50% of patients diagnosed with multiple sclerosis report problems with manipulative function and impairments in their daily lives due to this disorder. Therefore, the aim of the present study is to determine how pinch strength, prey strength and manipulative dexterity affect the quality of life and personal autonomy of people diagnosed with multiple sclerosis and to study whether there is a difference in these aspects between different types of multiple sclerosis. There was a total sample of 126 participants, of which 57 were controls and 69 cases. All of them were assessed with a Multiple Sclerosis Quality of Life-54 test, Nine-Hole Peg Test and Barthel Index. People with multiple sclerosis have worse pinch strength, prey strenght, manipulative dexterity, performance in basic activities of daily living and quality of life (p < 0.001). Prey strength is a conditioning factor for performance and quality of life in people with multiple sclerosis. As for the type of multiple sclerosis, relapsing-remitting multiple sclerosis presented better values (p < 0.001). The findings of this study point to the fact that patients diagnosed with multiple sclerosis have a decrease in prey strength, pinch strength, manipulative dexterity, quality of life and autonomy in activities of daily living compared to the healthy population.

Outdoor Navigation Assistive System Based on Robust and Real-Time Visual-Auditory Substitution Approach.

Blindness affects millions of people worldwide, leading to difficulties in daily travel and a loss of independence due to a lack of spatial information. This article proposes a new navigation aid to help people with severe blindness reach their destination. Blind people are guided by a short 3D spatialised sound that indicates the target point to follow. This sound is combined with other sonified information on potential obstacles in the vicinity. The proposed system is based on inertial sensors, GPS data, and the cartographic knowledge of pedestrian paths to define the trajectory. In addition, visual clues are used to refine the trajectory with ground floor information and obstacle information using a camera to provide 3D spatial information. The proposed method is based on a deep learning approach. The different neural networks used in this approach are evaluated on datasets that regroup navigations from pedestrians' point-of-view. This method achieves low latency and real-time processing without relying on remote connections, instead using a low-power embedded GPU target and a multithreaded approach for video processing, sound generation, and acquisition. This system could significantly improve the quality of life and autonomy of blind people, allowing them to reliably and efficiently navigate in their environment.

Autonomy and Coping with Stress in Persons with ASD

This article presents empirical analysis of selected issues related to autonomy of persons with ASD, along with the psychosocial conditions of its development. This analysis is an attempt to determine direct causes and particular types of conditions necessary for the development of autonomy in people with autism, manifested in the capacity of coping with stress. The theoretical basis for the research is the three-component model of autonomy, under which autonomy is an internal attribute of each person, manifesting itself in the qualities of authorship (the person feels to be the author of his/her own behaviour), interest-taking (reflection on internal and external events), and absence of the perceived sense of pressure or control.&#x0D; The research problems in this study concern the level of autonomy in people with ASD, the level of their psychosocial functioning in the dimension of coping with stress, and the potential correlations between the two parameters.&#x0D; A diagnostic survey method was used to obtain the research material, which employed the following research tools: Index of Autonomous Functioning, The Autism-Spectrum Quotient, Coping Inventory, the author’s own Interview Questionnaire, developed for the purposes of our study regarding age, gender, marital status, residence, education, income, past therapy and current health conditions.

Online Support Program for the Use of Music-Based Resources for Daily Care for Families Living with Dementia

Abstract This pilot project presents the results of a program aimed at studying the effectiveness of an online music therapy intervention to contribute and promote the autonomy and integral well-being of people living with dementia (PLD) and their family caregivers (FC) within the framework of Person-Centered Care. In addition, it aims to evaluate the impact of this intervention in selected areas of PLD and on their neuropsychiatric symptoms as well as the caregivers’ stress-related symptoms. The program was carried out with 13 families associated with 3 Alzheimer’s Family Associations of Catalonia (Spain). The intervention consisted of three online sessions, in a period of 3 months. It was addressed to FC and PLD with the key participation of three volunteers recruited by each of the Alzheimer Association for this purpose. The volunteers accompanied and gave in person support to each family during the online sessions and maintained contact on a weekly basis with the families throughout all the process. The music therapists developed personalized music resources for each family to use at home as often as possible and implemented the three online sessions to evaluate and modify the resources as needed. The results of the Neuropsychological Inventory show pre–posttest improvements in apathy, irritability, and agitation in the PLD and a decrease in the caregivers’ perceived stress for each of these challenging behaviors. Also, the caregivers perceived the positive impact of the program in several areas through the Impact Areas Questionnaire, with the highest being the facilitation of communication, offering distraction/entertainment, and providing a positive/creative experience. These results are discussed, and suggestions for future improvements to the program are included.

Reproductive justice for disabled people post-Dobbs: A call-to-action for researchers

The recent Supreme Court ruling in Dobbs v. Jackson Women's Health Organization endangers reproductive freedom, particularly for marginalized communities, including disabled people. Disability and health equity researchers possess unique insights into the needs and experiences of disabled people, making our involvement crucial in response to the Dobbs decision. Accordingly, guided by disability justice and reproductive justice principles, researchers should undertake disability-inclusive studies on the consequences of abortion restrictions, advocate for policy changes that uphold the reproductive autonomy of disabled people, and collaborate with disability-led movements advocating for reproductive freedom. Indeed, it is imperative for researchers to actively promote the inclusion and self-determination of disabled people regarding their reproductive health and well-being. Given the escalating threats to reproductive freedom and their profound impact on disabled people, there has never been a more pivotal moment for disability and health equity researchers to join the fight for reproductive justice.

To formalize, or not to formalize, business incubators’ networks: That is not the question

With more than seven decades of supporting entrepreneurs, today's business incubators are distinguished by their external networks. These networks of collaborators provide key resources, knowledge, and skills. Studies call on incubator managers to formalize the management of their networks, a practice that can generate a competitive advantage. However, research to date has been relatively silent on how to manage these external resources. To address this, the management practices of a top-performing business incubator in Canada were observed. Close to 50 individual interviews were conducted over a four-year period and theoretical concepts from the business incubation, network and social capital literature inspired the observed practices. The results show that network management is a shared responsibility between entrepreneurs, external stakeholders, and managers and formalizing external ties cannot be an all-purpose practice. As such, a theoretical framework is proposed to shed light on the dynamic nature of managing social capital. A management that is both relational and structuring brings out the trust and autonomy of people in situations of dynamic and, sometimes, constraining interactions. Highlighting these practices contributes to a more refined conceptualization of incubator management and, on a practical level, raises the importance of the human and relational dimensions in managing these changing environments.

Supporting autonomy in young people with gender dysphoria: psychotherapy is not conversion therapy

Opinion is divided about the certainty of the evidence base for gender-affirming medical interventions in youth. Proponents claim that these treatments are well supported, while critics claim the poor-quality evidence...

"I had no choice": A mixed-methods study on access to care for vaginal breech birth.

Although current recommendations support vaginal breech birth as a reasonable option, access to breech birth in US hospitals is limited. This study explored the experiences of decision-making and perceptions of access to care in people who transferred out of the hospital system to pursue home breech birth. We conducted a mixed methods study of people with a singleton, term breech fetus who transferred out of the US hospital system to pursue home breech birth. Twenty-five people completed an online demographic and psychosocial survey, and 23 (92%) participated in semi-structured interviews. We used an interpretive description approach informed by situational analysis to analyze qualitative data about participants' experiences and perceived access to care. Of 25 individuals who left the hospital system to pursue a home breech birth, most felt denied informed choice (64%) and threatened or coerced into cesarean (68%). The majority reported low or very low autonomy in decision-making (n = 20, 80%) and high decisional satisfaction using validated measures. Many participants felt safer in a hospital setting but were not able to access care for planned vaginal breech hospital birth, despite extensive efforts. Participants felt "backed into a corner" and "forced into homebirth," perceiving a lack of access to safe and respectful care in the hospital system. Some service users believe that home birth is their only option when they cannot access hospital-based care for vaginal breech birth. Current barriers to care for breech birth limit birthing people's autonomy and may be placing them and their infants at increased risk.

Reproductive psychiatric advance directives: promoting autonomy for perinatal people with serious mental illness diagnoses.

People with serious mental illness (SMI) diagnoses who become pregnant are particularly vulnerable to symptom recurrence and resulting potential lack of decision-making capacity (Taylor et al. J Psychiatr Res 104:100-107, 2018; Bagadia et al. Int J Soc Psychiatry 66:792-798, 2020). In these situations, prenataland behavioral health providers have little legally viable guidance on what medical and/or psychiatric care the patient desires (Aneja and Arora Indian J Med Ethics V:133-139, 2020). We created a "Reproductive Psychiatric Advance Directive (PAD)," grounded in Reproductive Justice principles, that promotes patient autonomy by proactively articulating perinatal medical and psychiatric care preferences. We conducted a medical and legal literature review using two sets of terms related to (1) PADs and (2) reproductive health. We convened an expert working group of legal, medical, psychiatric, peer, and advocacy leaders and community-based organizations to develop a Reproductive PAD. Our literature review yielded no results about Reproductive PADs. We created de novo a Reproductive PAD template with sections on medical and psychiatric history, informed consent for critical medical and psychiatric care, family planning and custody preferences, and optional sections on abortion and on electroconvulsive therapy. The Reproductive PAD provides a possible legal mechanism for people of childbearing age with SMI diagnoses to articulate their medical and psychiatric care choices around reproduction and pregnancy. Future research should evaluate the Reproductive PAD as an effective tool for protecting patient autonomy during pregnancy and postpartum and guiding medical and psychiatric providers.

They Will Never Forget How You Made Them Feel: Implementing Harm Reduction in the Perinatal Setting

Harm reduction is a framework built upon respect for people who use drugs. Pregnancy is a priceless window of opportunity for positive change, when parents are driven to improve their health and well-being for their future child, and harm reduction can provide direction for this motivation. Perinatal harm reduction can include goals of abstinence, decreased use, safer use, or a goal unrelated to substance use, such as obtaining housing or employment. We engage in harm reduction, not only by promoting beneficial practices, but by eliminating harmful ones. Despite the science, effective program models, and overwhelming agreement that substance use disorder is a health condition and not deviant behavior, harm reduction programs for pregnant and parenting people are rare, and punitive treatment is the norm. To achieve equitable treatment for people with perinatal substance use disorder and protect the parent-infant dyad, we must stop harmful practices, respect the autonomy of people who use drugs, and address substance use disorders while increasing access to the social determinants of health.

Under pressure: The paradox of autonomy and social norms in drug education

Much contemporary youth drug education operates from the assumption that young people's decisions to use alcohol and other drugs often stem from a misunderstanding that youth consumption is so common as to constitute a ‘social norm’. Known as the ‘social norms’ approach, the stated aim of this form of drug education is to empower young people to avoid consumption by constituting it as uncommon and, therefore, abnormal. Taking the relationship between autonomy and norms as my primary concern, I examine key assumptions of the social norms approach through an analysis of a dataset of 23 ‘evidence-based’ drug education texts currently recommended for use in Australian secondary schools. Drawing on Rasmussen's (2011) analysis of autonomy as a ‘paradox’ in which young people are compelled to demonstrate their autonomy by submitting to external authority, I argue that drug education constitutes young people's (lack of) autonomy as the key cause of and solution to youth drug use through three strategies: (1) decision-making exercises that position consumption as the result of an inability to make the rational choice; (2) activities that equate drug consumption with succumbing to peer pressure and failing to demonstrate autonomy; and (3) deployment of population level data on youth drug use that constitutes it as atypical. Together these strategies suggest that while drug education often purports to empower young people to make empowered decisions, it operates as a broader social intervention that seeks to produce compliant rather than autonomous subjects.

Association between perceived coercion and perceived level of information in involuntarily admitted patients: Results from a multicenter observational study in Switzerland

BackgroundInvoluntary admissions (IA) to psychiatric hospitals are controversial because they interfere with people's autonomy. In some situations, however, they appear to be unavoidable. Interestingly, not all patients perceive the same degree of coercion during IA. The aim of this study was to assess whether the level of knowledge about one's own IA is associated with perceived coercion. MethodsThis multicenter observational study was conducted on n = 224 involuntarily admitted patients. Interviews were conducted at five study centers from April 2021 to November 2021. The Macarthur Admission Experience Survey was administered to assess perceived coercion. Knowledge of involuntary admission, perceptions of information received, and attitudes towards legal aspects of involuntary admission were also assessed. ResultsWe found that higher levels of knowledge about IA were negatively associated with perceived coercion at admission. Perceived coercion did not differ between study sites. Only half of the patients felt well informed about their IA, and about a quarter found the information they received difficult to understand. DiscussionLegislation in Switzerland requires that patients with IA be informed about the procedure. Strategies to improve patients' understanding of the information given to them about IA might be helpful to reduce perceived coercion, which is known to be associated with negative attitudes towards psychiatry, a disturbed therapeutic relationship, avoidance of psychiatry, and the risk of further coercion.

Abortion patients' decision making about where to obtain out-of-state care following Texas' 2021 abortion ban.

To assess pregnant Texans' decisions about where to obtain out-of-state abortion care following the September 2021 implementation of Senate Bill 8 (SB8), which prohibited abortions after detectable embryonic cardiac activity. In-depth telephone interviews with Texas residents ≥15 years of age who obtained out-of-state abortion care after SB8's implementation. This qualitative study explored participants' experiences identifying and contacting abortion facilities and their concerns and considerations about traveling out of state. We used inductive and deductive codes in our thematic analysis describing people's decisions about where to obtain care and how they evaluated available options. Texas residents self-referred to the study from flyers we provided to abortion facilities in Arkansas, Colorado, Kansas, Louisiana, Mississippi, New Mexico, and Oklahoma. We also enrolled participants from a concurrent online survey of Texans seeking abortion care. Participants (n = 65) frequently obtained referral lists for out-of-state locations from health-care providers, and a few received referrals to specific facilities; however, referrals rarely included the information people needed to decide where to obtain care. More than half of the participants prioritized getting the soonest appointment and often contacted multiple locations and traveled further to do so; others who could not travel further typically waited longer for an appointment. Although the participants rarely cited state abortion restrictions or cost of care as their main reason for choosing a location, they often made sacrifices to lessen the logistical and economic hardships that state restrictions and out-of-state travel costs created. Informative abortion facility websites and compassionate scheduling staff solidified some participants' facility choice. Pregnant Texans made difficult trade-offs and experienced travel-related burdens to obtain out-of-state abortion care. As abortion bans prohibit more people from obtaining in-state care, efforts to strengthen patient navigation are needed to reduce care-seeking burdens as this will support people's reproductive autonomy.

'Trying to battle a very slow version of the system that exists outside': Experiences of waiting for healthcare in English prisons.

Prison has been described as the ultimate form of time-punishment - a place where time is no longer a commodity for individuals to spend, but is ordered by a system which symbolises its power through the control of segments of people's lives. As such, a prison sentence epitomises the experience of waiting. Yet anticipating release is not the only form of waiting within carceral life; waiting for healthcare in its various forms also shapes people's temporal experience. Drawing on interviews with 21 people who have lived in prison, this article describes how experiences of waiting for healthcare are mediated by expectation or hope, perceptions of the relationship between behaviour and healthcare access, and the consequences of waiting for care. Constraints on the autonomy of people in prison mean that waiting for healthcare differs in important ways from waiting for healthcare in the community, and can be perceived as an additional form of punishment. The experience of waiting for prison healthcare can affect physical and psychological well-being, and can in itself be understood as a pain of imprisonment.