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La metodología de Planificación Centrada en la Persona (PCP) cada vez tiene mayor impacto en España. Comenzando desde las distintas legislaciones que regulan la atención a este colectivo en las diferentes autonomías y terminando en los centros que proveen este servicio. No obstante, existe escasa literatura internacional de estudios empíricos a grandes escalas que sitúen este enfoque metodológico en una posición relevante que garantice la eficacia de la PCP. El objetivo principal de este estudio es conocer el estado del uso de la metodología de PCP a través de estudios avalados empíricamente que sostengan tanto beneficios como limitaciones durante los últimos 10 años (2012-2022). Para ello, se ha realizado una revisión sistemática desde las directrices de PRISMA (2020), que incluye un total de 31 artículos. Como conclusión, se han descubierto más beneficios que limitaciones entre las que destacan las ventajas en su uso para las personas con discapacidad intelectual y del desarrollo y las mejoras de aspectos relacionados con la autodeterminación. No obstante, las limitaciones prevalecen por la falta de apoyos y recursos adecuados de las organizaciones para responder a una planificación centrada en la persona y la necesidad de formación de las personas implicadas en la elaboración de la PCP, lo que genera la incógnita de si se están realizando buenas prácticas en el uso de dicha metodología. (AU)
The methodology of Person Centered Planning (PCP) is having an increasing impact in Spain. Starting from the different legislations that regulate the attention to this group in the different autonomous regions and ending in the centers that provide this service. However, there is little international literature on large-scale empirical studies that place this methodological approach in a relevant position to guarantee the efficacy of PCP. The main objective of this study is to know the status of the use of PCP methodology through empirically supported studies that sustain both benefits and limitations during the last 10 years (2012-2022). For this purpose, a systematic review has been conducted since the PRISMA guidelines (2020), including a total of 31 articles. As a conclusion, more benefits than limitations have been found, among which the advantages in its use for people with intellectual and developmental disabilities and improvements in aspects related to self-determination stand out. However, limitations prevail due to the lack of adequate support and resources from organizations to respond to person-centered planning and the need for training of the people involved in the development of the PCP, which raises the question of whether good practices are being carried out in the use of this methodology. (AU)
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Deficiências do Desenvolvimento , Deficiência Intelectual , Pessoas com Deficiência , EspanhaRESUMO
La metodología de Planificación Centrada en la Persona (PCP) cada vez tiene mayor impacto en España. Comenzando desde las distintas legislaciones que regulan la atención a este colectivo en las diferentes autonomías y terminando en los centros que proveen este servicio. No obstante, existe escasa literatura internacional de estudios empíricos a grandes escalas que sitúen este enfoque metodológico en una posición relevante que garantice la eficacia de la PCP. El objetivo principal de este estudio es conocer el estado del uso de la metodología de PCP a través de estudios avalados empíricamente que sostengan tanto beneficios como limitaciones durante los últimos 10 años (2012-2022). Para ello, se ha realizado una revisión sistemática desde las directrices de PRISMA (2020), que incluye un total de 31 artículos. Como conclusión, se han descubierto más beneficios que limitaciones entre las que destacan las ventajas en su uso para las personas con discapacidad intelectual y del desarrollo y las mejoras de aspectos relacionados con la autodeterminación. No obstante, las limitaciones prevalecen por la falta de apoyos y recursos adecuados de las organizaciones para responder a una planificación centrada en la persona y la necesidad de formación de las personas implicadas en la elaboración de la PCP, lo que genera la incógnita de si se están realizando buenas prácticas en el uso de dicha metodología. (AU)
The methodology of Person Centered Planning (PCP) is having an increasing impact in Spain. Starting from the different legislations that regulate the attention to this group in the different autonomous regions and ending in the centers that provide this service. However, there is little international literature on large-scale empirical studies that place this methodological approach in a relevant position to guarantee the efficacy of PCP. The main objective of this study is to know the status of the use of PCP methodology through empirically supported studies that sustain both benefits and limitations during the last 10 years (2012-2022). For this purpose, a systematic review has been conducted since the PRISMA guidelines (2020), including a total of 31 articles. As a conclusion, more benefits than limitations have been found, among which the advantages in its use for people with intellectual and developmental disabilities and improvements in aspects related to self-determination stand out. However, limitations prevail due to the lack of adequate support and resources from organizations to respond to person-centered planning and the need for training of the people involved in the development of the PCP, which raises the question of whether good practices are being carried out in the use of this methodology. (AU)
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Deficiências do Desenvolvimento , Deficiência Intelectual , Pessoas com Deficiência , EspanhaRESUMO
Introduction: Given the increasing global population of older adults, it is essential and inevitable that healthcare centers and nursing homes address and accommodate diversity in their support systems as interventions for healthy aging. The active aging and the inclusion of all people regardless of their religion, origin, and/or sexual orientation is essential to create a climate of safety. Discrimination must be addressed from all angles, at the social level, at the business level and by all workers in nursing homes. Methodology and results: This study provides a comprehensive review of existing literature to systematize information on diversity among older adults in healthcare centers and nursing homes. Out of 1.458 articles identified, 10 were analyzed in depth, revealing that addressing diversity among older adults is crucial to overall mental and physical healthy aging. The findings underscore the need for a multidisciplinary approach and effective management through the Person-Centered Care Model (PCCM). Discussion and conclusion: This study highlights the critical role of the Person-Centered Care Model (PCCM) in addressing diversity in aging needs. It highlights the necessity of tailoring care based on individual life histories and experiences. Additionally, it calls for the implementation of inclusive policies in nursing homes and emphasizes the need for professional training on diversity to ensure these facilities are safe and supportive for all residents.
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Psychiatry has the historical opportunity to shape the future of mental health care, medicine, and society. The term New Brave Psychiatry refers to challenges to psychiatry in our volatile, uncertain, complex and ambiguous (VUCA) world. The present and the future of psychiatry lie on the recognizing these challenges and resolving them. Transdisciplinary multiperspective integrative view on psychiatry (TIP) involving creative, person-centered narrative psychopharmacotherapy (CP-CNP) and empathization-based cognitive-emotional-behavioral therapy (EB-CEBT) as an art and practice of the empathic learning organization are presented in this article as well as the culture of empathy as a cornerstone of good clinical practice and mental health. We should all be driven by the vision of psychiatry and other mental health disciplines for a better world and promotion of mental health for all as a part of the Global Enlightenment 2.0 for Sustainability of the Earth System.
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Empatia , Psiquiatria , Empatia/fisiologia , Humanos , Psiquiatria/métodos , Psiquiatria/tendências , Saúde Mental , Terapia Cognitivo-Comportamental/métodos , Transtornos Mentais/terapiaRESUMO
INTRODUCTION: The experiences and needs of living with chronic respiratory diseases (CRD) can be overwhelming. Individuals often rely on informal care for daily assistance and having a family/friend caregiver has been associated with better health outcomes. Nevertheless, family/friend caregivers frequently feel alone and unsupported. Pulmonary rehabilitation (PR) leads to multidimensional benefits across CRD and individuals have suggested improvements for PR. Family/friend caregivers highly support PR in practical and psychosocial ways and have identified this intervention as an opportunity to be supported. This reciprocal relationship between PR and the family/friend caregivers has been scarcely explored and its importance for the management of CRD is poorly understood. AREAS COVERED: This perspective synthesizes the experiences and needs of living with CRD from the perspective of people with CRD and their family/friend caregivers; and proposes a vision of a reciprocal/symbiotic relationship, through PR, for optimizing care for people with CRD and their caregivers. EXPERT OPINION: A deeper understanding/recognition of the extensiveness and somewhat overlap of the experiences and unmet needs of individuals with CRD and their family/friend caregivers; and of the reciprocal/symbiotic relationship between PR and the family/friend caregivers might be important to optimizing management and, ultimately, individuals and caregivers' outcomes in CRD.
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The transition from childhood to adolescence presents elevated risks for the onset of psychopathology in youth. Given the multilayered nature of development, the present study leverages the longitudinal, population-based Adolescent Brain Cognitive Development Study to derive ecologically informed risk/resilience profiles based on multilevel influences (e.g., neighborhood and family socioeconomic resources, parenting, school characteristics) and their transition pathways and examine their associations with psychopathology. Latent profile analysis characterized risk/resilience profiles at each time point (i.e., baseline, Year-1, Year-2); latent transition analysis estimated the most likely transition pathway for each individual. Analysis of covariance was used to examine associations between profile membership at baseline (i.e., ages 9-11) and psychopathology, both concurrently and at Year-2 follow-up. Further, we examined the associations between profile transition pathways and Year-2 psychopathology. Four distinct profiles emerged across time - High-SES High-Protective, High-SES Low-Protective, Low-SES High-Family-Risk, and Low-SES High-Protective. Despite reasonably high stability, significant transition over time among profiles was detected. Profile membership at baseline significantly correlated with concurrent psychopathology and predicted psychopathology 2 years later. Additionally, profile transition pathways significantly predicted Year-2 psychopathology, exemplifying equifinality and multifinality. Characterizing and tracing shifts in ecologically informed risk/resilience influences, our findings have the potential to inform more precise intervention efforts in youth.
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BACKGROUND: Older adults with chronic or acute cognitive impairment, such as dementia or delirium, who are hospitalized face unique barriers to person-centered care and a higher risk for negative outcomes stemming from hospitalizations. There is a need for co-designed interventions adapted for these patients to the hospital setting to improve care and outcomes. Patient life storytelling interventions have demonstrated promise in enhancing person-centered care by improving patient-care team relationships and providing information to enable care tailored to individual needs and values. OBJECTIVE: This study aims to engage patients, care partners, and clinical stakeholders in a co-design process to adapt an existing life storytelling model for use with older adults with dementia and at risk of delirium in the acute care hospital setting. METHODS: We recruited patients with dementia or at risk of delirium who were hospitalized, their care partners, clinicians, and informaticists. A 3-stage co-design process that used a mixed methods data collection approach including in-depth interviews and surveys was completed. We used content analysis to analyze qualitative data and descriptive statistics to summarize quantitative data. RESULTS: In total, 27 stakeholder informants (ie, patients, care partners, and interdisciplinary care team [IDT] members) participated. Stakeholders were unanimously interested in using patient life stories as a tool for hospital care through electronic health record (EHR) integration. Stakeholders shared potential topics for life stories to cover, including social support, information on patients' key life events, and favorite activities. Participants provided insights into the logistics of integrating life stories into acute care, including interview arrangement, story-sharing methods, and barriers and facilitators. IDT members shared preferences on EHR integration, resulting in 3 co-designed mock-ups of EHR integration options. Stakeholders shared ways to optimize future acceptability and uptake, including engaging with the care team and promoting awareness of life stories, ensuring suitability to the acute environment (eg, distilling information in an easily digestible way), and addressing concerns for patient capacity and privacy (eg, engaging care partners when appropriate). Thoughts on potential impacts of life stories were also elicited, including improving patient- and care partner-IDT member relationships; humanizing patients; increasing clinical team, patient, and caregiver satisfaction; and enabling more specific, tailored care for patients with dementia and at risk of delirium. CONCLUSIONS: This study resulted in a co-designed life storytelling intervention for patients with dementia and at risk for delirium in an acute care hospital setting. Stakeholders provided valuable information to ensure future intervention acceptability and uptake, including potential benefits, facilitators, and challenges in the acute care setting.
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Delírio , Demência , Hospitalização , Participação dos Interessados , Humanos , Delírio/terapia , Delírio/psicologia , Delírio/prevenção & controle , Demência/terapia , Demência/psicologia , Idoso , Feminino , Masculino , Idoso de 80 Anos ou mais , Pesquisa Qualitativa , Assistência Centrada no Paciente , NarraçãoRESUMO
Innovative ways of working are emerging in health care to meet the complex needs of people living with multiple long-term conditions. While these initiatives are often measured for their health and economic outcomes, few studies prioritize the patient experience. This qualitative descriptive study is one of a few studies exploring the patient experience of attending a dedicated long-term conditions annual review clinic in a primary care setting in England. The service model aims to provide a person-centered, holistic approach to the management and support of people living with multiple long-term conditions. The study presents findings from in-depth interviews with 12 participants. Data analyzed through framework analysis revealed four themes relating to the patient experience: the clinic as a place, continuity, staying healthy, and partnership opportunities. Results highlight the challenges to providing personalized care. We found that attendance at the clinic prompted self-care behaviors, however, patients wanted a more holistic, integrated, and consistent service that provided continuity of therapeutic relationships that involved them in decision-making and care planning. We conclude that the experience of patients in this study suggests this service model can enable patients to manage their health and improve well-being, however, while a person-centered philosophy may underpin service models, our research shows that ensuring this philosophy is born out in service delivery and recognized by patients is problematic. Therefore, service providers need to recognize the values and perspectives of patients, aligning these with the design and delivery of services.
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Mental health disparities in transgender and gender diverse (TGD) populations call for more research examining gender minority stressors (GMS) as antecedents to their psychological distress, especially for the long-underrepresented groups living in conservative societies towards gender minorities. Furthermore, some questions remain underexamined, including the relative, independent influences of various GMS on TGD people's mental well-being (i.e., uniqueness of each stressor); how these stressors would configurate with each other in distinctive patterns to characterize subgroups of TGD people (i.e., beyond-average heterogeneity); and how these stressors would constitute a psychological network and vary in their centrality in that network (i.e., holistic complexity). To narrow such gaps, we examined the links between GMS and TGD people's psychological distress, using survey data collected in 2023 from 410 Chinese TGD people (Meanage = 22.33 years, SD = 4.27; 306 transgender, 70 non-binary/gender-queer/gender-fluid, 26 agender/gender-neutral, 3 intersex, and 5 others). We approached such links from three perspectives. First, variable-centered analyses indicated that while different GMS were considered simultaneously, internalized transphobia, preoccupation with gender dysphoria, and gender-related victimization were uniquely associated with psychological distress. Second, person-centered analyses yielded a 3-profile solution. Psychological distress varied systematically across profiles. Last, network analyses revealed a 3-cluster structure: Distal, Proximal Internal, and TGD-Specific Stressors. Preoccupation with gender dysphoria was the most central node. These findings contribute to a more nuanced understanding of the implications of GMS for TGD people's mental well-being. GMS related to internal struggles with gender identity might be among the central intervention targets to prevent/reduce TGD people's psychological distress.
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In this narrative review, we explore the latest evidence on semantic interventions for older adults, including both prevention and rehabilitation/remediation efforts, discussing them particularly in the context of dementia. Cognitive interventions vary in their level of structure, encompassing standardized (task-focused tasks) and unstandardized tasks (person-centered tasks). These interventions also differ in their target: rehabilitation or prevention. Addressing semantic knowledge/semantic memory/semantics is important, primarily because its efficiency impacts other cognitive domains. Semantic tasks are commonly included in preventive and rehabilitation programs, typically as standardized tasks with pre-defined semantic referents. On the other hand, person-centered approaches introduce personally relevant semantics, allowing patients to share thoughts and experiences with expressive language. Although these approaches offer benefits beyond cognitive improvement, their lack of structure may pose challenges. Our question club (CQ) program blends structured activities with personally relevant semantics, aiming to harness the advantages of both methods. Additionally, in this narrative review, we discuss future challenges and directions in the field of semantic interventions.
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Although fathers experience emotional stress both during the care period and after discharge, there is limited research focusing exclusively on fathers' experiences after their time in a neonatal intensive care unit. Their experiences are important for tailoring support to fathers based on their individual needs. This paper is part of a longitudinal study in which parents were followed by means of questionnaires and individual interviews during a two-year period after discharge from hospital-based neonatal home care. A qualitative content analysis with an inductive approach was used to elucidate the experiences of fathers six months after their preterm infant's discharge. Twelve fathers participated in the study. The following categories emerged and constituted the result: "Vivid memories from the NICU," "Struggling with new challenges in life" and "Transition to home still in their thoughts." The approach and attitude of health-care professionals may contribute to fathers' involvement during the care period, as fathers tend to set their own feelings aside.
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Mental health disorders affect a substantial portion of the global population. Despite preferences for psychotherapy, access remains limited due to various barriers. Digital mental health interventions (DMHIs) have emerged to increase accessibility, yet engagement and treatment completion rates are concerning. Evidence across healthcare where some degree of self-management is required show that treatment engagement is negatively influenced by contextual complexity. This article examines the non-random factors influencing patient engagement in digital and face-to-face psychological therapies. It reviews established models and introduces an adapted version of the Cumulative Complexity Model (CuCoM) as a framework for understanding engagement in the context of digital mental health. Theoretical models like the Fogg Behavior Model, Persuasive System Design, Self-Determination Theory, and Supportive Accountability aim to explain disengagement. However, none adequately consider these broader contextual factors and their complex interactions with personal characteristics, intervention requirements and technology features. We expand on these models by proposing an application of CuCoM's application in mental health and digital contexts (known as DiCuCoM), focusing on the interplay between patient burden, personal capacity, and treatment demands. Standardized DMHIs often fail to consider individual variations in burden and capacity, leading to engagement variation. DiCuCoM highlights the need for balancing patient workload with capacity to improve engagement. Factors such as life demands, burden of treatment, and personal capacity are examined for their influence on treatment adherence. The article proposes a person-centered approach to treatment, informed by models like CuCoM and Minimally Disruptive Medicine, emphasizing the need for mental healthcare systems to acknowledge and address the unique burdens and capacities of individuals. Strategies for enhancing engagement include assessing personal capacity, reducing treatment burden, and utilizing technology to predict and respond to disengagement. New interventions informed by such models could lead to better engagement and ultimately better outcomes.
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OBJECTIVES: To understand in-facility follow-up care-seeking behavior among both people who self-managed medication abortions and those who obtained facility-managed care in low-and-middle-income countries. We explore factors that contribute to meeting individual self-reported follow-up care needs, core to person-centered care. STUDY DESIGN: We conducted a qualitative, codebook thematic analysis of 67 in-depth interviews conducted with people who self-managed medication abortions or obtained facility-managed medication abortion care. We first classified individuals as having their follow-up care needs met (not seeking care when the participant felt confident that additional care was not warranted or desired or receiving care if it was desired) or not. Our a priori analytic domains came from the Anderson model of health services utilization - predisposing, enabling, or need factors (perceived and evaluated need for health services) that contributed to having follow-up care needs met or not. We also describe emergent themes within each domain. RESULTS: Most participants (n=59, 88%) had their follow-up care needs met; half (n=33, 49%) sought follow-up care in a facility. Prior birth or abortion experiences emerged as predisposing factors for having follow-up care needs met. Having accompaniment support (from activists or hotlines who provide abortion guidance outside of clinical settings), knowing what to expect, and information sources were key enabling factors for having follow-up care needs met. Need factors included flexible follow-up care guidelines. Those who did not have their follow-up care needs met described predisposing negative health system experiences; enabling factors including health system challenges, stigma from providers, and legal risk; and need factors of required follow-up care guidelines. CONCLUSIONS: Medication abortion follow-up care experiences are diverse, and individual needs can be met both in and outside of health facilities. Understanding prior experiences, enabling accompaniment support, and considering flexible follow-up care guidelines can support meeting individual follow-up care needs, which is essential to person-centered abortion care. IMPLICATIONS: Follow-up care needs, essential to ensuring access to high-quality abortion services, can be met in both self-managed and in-facility medication abortion models. Policies that require follow-up care when it is not needed or desired by the person can reinforce ideas that self-managed abortion is not safe or effective, despite existing evidence.
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Introduction: Ethiopia has made remarkable progress in expanding access to and provision of comprehensive abortion care. However, complications due to unsafe abortion persist. As efforts to increase quality of comprehensive abortion care continue, evaluating service quality is critical. Although "women-centered" abortion care is a central component of Ethiopia's technical guidelines for safe abortion, research has mostly focused on access to care, availability of services, and meeting clinical criteria, rather than examining service quality from abortion clients' perspectives. This study assesses the quality of comprehensive abortion care (CAC) in public health facilities, from clients' perspectives, in four regions of Ethiopia to examine how person-centered care differs based on facility and service characteristics. Methods: We conducted 1,870 client exit surveys in 2018 using structured questionnaires with women who received induced abortion or postabortion care services from 76 public health facilities across four regions: Tigray, Amhara, Oromia, and Southern Nations, Nationalities, and People's. We operationalized person-centered care by mapping 30 indicators of quality to five of the six domains in the Person-Centered Care Framework for Reproductive Health Equity developed by Sudhinaraset and colleagues (2017): dignity & respect; autonomy; communication & supportive care; trust, privacy, and confidentiality; and health facility environment. We calculated descriptive, bivariate, and multivariable statistics to examine associations between service characteristics and person-centered care. Results: CAC clients reported high levels of person-centered care, with exceptionally positive experiences for outcomes in the dignity and respect and trust, privacy, and confidentiality domains. However, there was notable room for improving client experiences across three domains: autonomy, communication and supportive care, and health facility environment. Client-reported quality outcomes differed significantly by diagnosis (induced or postabortion care), region, health facility type, and procedure type. Clients in Amhara, clients at tertiary and primary hospitals, and clients who received postabortion care reported lower levels of person-centered care. Discussion: The positive experiences reported by comprehensive abortion care clients bolster evidence of the impact of the Ethiopian government's strategy to increase abortion access in the public health sector. However, notable disparities exist for key subgroups, particularly those seeking postabortion care and people visiting tertiary and primary hospitals. Quality improvement efforts should concentrate on improving abortion clients' autonomy, communication and supportive care, and the health facility environment. The Ethiopian Ministry of Health and its partners must dedicate resources to improve postabortion care quality, integration of reproductive health services within CAC, and pain management for MA clients as vital interventions.
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BACKGROUND: Ethical competencies dealing with decision-making for clinicians involved in artificially administered nutrition and hydration (AANH) have not been defined in the literature. Although clinical assessments identify nutrition needs and appropriate routes of nutrition administration, an assessment of the ethical, cultural, and spiritual implications of the medical nutrition therapy may be overlooked. METHODS: Eleven competency statements were developed by members of two international sections of the American Society for Parenteral and Enteral Nutrition. This descriptive cross-sectional survey study was conducted to measure the importance of the competency statements to the membership of two sections using a five-point Likert scale of 1-5 (1-low to 5-high). RESULTS: A total of 113 responses (12.5% response rate) were obtained predominantly from physicians and dietitians from 25 countries. There was a wide range of world regions of the 49% respondents outside of the United States. Means and SDs were calculated for agreement with the 11 competency statements with overall means ranging from 4.32 to 4.67. Most of the participants cared for adult/older adult patients (63.7%) exclusively, and 12.4% cared for pediatric/neonate patients exclusively; the remainder (23.9%) cared for both populations. Respondents reported they were either experienced, competent, or expert (88.6%) in dealing with ethical issues related to AANH. CONCLUSION: This international interdisciplinary group agreed that the integration of ethical, cultural, and spiritual competencies into clinical decision-making regarding artificially AANH is important.
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Introduction: In dementia care, the integration of innovative interventions is essential to enhancing the wellbeing and quality of life of people with dementia. Among these interventions, the Music Mirror intervention has emerged as a promising tool to provide personalized audio-biographical cues aimed at soothing, motivating, and engaging people with dementia. This study examined the effects of a Music Mirror intervention on the (a) wellbeing, emotions, and behavioral and psychological symptoms of 155 individuals with dementia, (b) perceived burden, relationship quality, and gains of their informal/formal caregivers, and (c) momentary closeness, wellbeing and stress of caregivers. Methods: This four-year study employed a quasi-experimental waiting-control group design, utilizing before-after measurements in Swiss hospitals, care homes, and domestic homes. For four 6-week intervention phases, Music Mirrors, i.e., brief written resources of acoustic material, associated with practical activities of daily life, were applied at least twice a week by the caregivers during critical moments such as staff handover. Repeated measures' analysis of variance and other tests were used to analyze the data. Results: Individuals with dementia had a higher wellbeing after the Music Mirror use across different care situations. While the Music Mirrors were played, individuals with dementia showed more positive than negative emotions at each measurement occasion, but emotion scores did not significantly change over time. After the MM use, caregivers felt better, closer to the person with dementia, and less stressed. Caregivers also reported significant gains at the end of the intervention. However, there were no significant changes in the frequency of the behavioral and psychological symptoms of dementia, care-related burden and relationship quality over time, regardless of the treatment condition. Discussion: By incorporating personalized audio-biographical cues into their care routines, the wellbeing of people with dementia was improved as well as it had positive momentary effects on their caregivers. The Music Mirror intervention addresses the preferences and needs of people with dementia and helps build bonds between care-recipients and caregivers. Therefore, Music Mirrors can be seen as a highly adaptive and individualized instrument to improve momentary wellbeing of people with dementia in various care situations during daily life.
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Planning for future medical treatment, and care, referred to as advance care planning (ACP), has evolved to a focus on conversations that explore values and preferences in a broad sense. Given diverse practices internationally, we examined how international experts would define ACP themselves and whether this differs by medical profession. In an explorative study embedded in a Delphi study on ACP in dementia, experts in ACP in persons with dementia and other diseases reported at baseline how they would define ACP "in one sentence, off the top of your head". We analyzed the text of the reported definitions with content analysis, created codes to identify small definition elements, then merged them into categories. We assessed phrasing from a patient, healthcare professional, or neutral perspective. Almost half (45%) of 87 experts from 30 countries phrased ACP from a patient perspective (29% neutral, 26% professional). Codes (n=131) were merged into 19 categories. Five categories appeared in more than half of the definitions: 'Choosing between options', 'Care and treatment', 'Planning for the future', 'Individual person' and 'Having conversations'. Other categories, including 'End of life' and 'Documentation' were mentioned by a minority of experts. The categories and perspectives did not appreciably differ between physicians and other professionals. In conclusion, international experts from 30 countries typically defined ACP as person-centered conversations to choose future care and treatment, without focusing on end of life or documentation. Future research should evaluate the extent to which such conceptualization of ACP is present within clinical programs and practice recommendations and our work may serve as a starting point to monitor changes over time. Registration: World Health Organization Clinical Trial Registry Platform (NL9720).
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Person-centered language is a well-known approach to reducing stigmatizing labels among marginalized groups. However, little research has explored person-centered language's impact in criminal justice classrooms. Utilizing a mixed-method research design, this study explores the impact of person-centered language on students' perceptions of persons convicted of sex offenses. The study used three sections of an online Sex Crimes course. The course sections were identical, except for the language used and awareness of person-centered language; the control group section did not utilize person-centered language, the second section utilized person-centered language, and the third section utilized person-centered language and was given an informational lecture on stigmatizing language. Quantitative data was collected from the Perceptions of Sex Offenders Scale at the beginning and end of the semester. Students' end-of-semester reflection papers served as the qualitative component. The findings suggest shifts in punitive attitudes toward sentencing and management for the group exposed to person-centered language and the informational lecture. These differences were not apparent for the other groups and subscales. While qualitative data provided a more in-depth understanding of students' perceptions, overall, exposure to person-centered language didn't seem to impact student perceptions. However, exposure alongside a lecture about person-centered language, seemingly had a more pronounced impact on students' perceptions, suggesting that transparency surrounding language and reducing stigma are important components of person-centered language. The findings have implications for using person-centered language for criminal justice pedagogical practices, as well as considerations beyond the classroom (e.g., program development and curricula).
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OBJECTIVES: This study assessed the readiness of The Individualized Positive Psychosocial Interaction (IPPI) program in the nursing home (NH) setting from the perspective of NH providers implementing the IPPI. The evidence-based IPPI program is designed to help remediate distress and improve mood for residents living with dementia. NH staff are trained to engage residents in brief (i.e. 10-min) one-to-one, preference-based activities to alleviate emotional distress and enhance quality of life. METHOD: NH providers (n = 15) who championed the IPPI implementation completed an exit interview based on the nine domains of the Readiness Assessment for Pragmatic Trials (RAPT). Interviews were audio-recorded, transcribed, and coded by RAPT domains, then scored by the research team to reflect an average for each domain. RESULTS: Providers rated the IPPI program's readiness high on the domains of alignment, impact, risk, implementation protocol, evidence, cost, and acceptability. The domains of measurement and feasibility scored lower, likely due to broader contextual issues and require particular attention. CONCLUSION: Results illustrate that the IPPI program successfully aligns with stakeholder priorities, is a safe intervention with minimal risk, and has beneficial outcomes. The IPPI's low cost, design, and alignment with organizational goals also facilitated implementation while measuring outcomes and staffing considerations impacted organizational capacity for implementation.
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BACKGROUND: Cohort data on continuous glucose monitoring (CGM) metrics are scarce for liver glycogen storage diseases (GSDs) and idiopathic ketotic hypoglycemia (IKH). The aim of this study was to retrospectively describe CGM metrics for people with liver GSDs and IKH. PATIENTS AND METHODS: CGM metrics (descriptive, glycemic variation and glycemic control parameters) were calculated for 47 liver GSD and 14 IKH patients, categorized in cohorts by disease subtype, age and treatment status, and compared to published age-matched CGM metrics from healthy individuals. Glycemic control was assessed as time-in-range (TIR; ≥3.9 - ≤7.8 and ≥3.9 - ≤10.0 mmol/L), time-below-range (TBR; <3.0 mmol/L and ≥3.0 - ≤3.9 mmol/L), and time-above-range (TAR; >7.8 and >10.0 mmol/L). RESULTS: Despite all patients receiving dietary treatment, GSD cohorts displayed significantly different CGM metrics compared to healthy individuals. Decreased TIR together with increased TAR were noted in GSD I, GSD III, and GSD XI (Fanconi-Bickel syndrome) cohorts (all p < 0.05). In addition, all GSD I cohorts showed increased TBR (all p < 0.05). In GSD IV an increased TBR (p < 0.05) and decreased TAR were noted (p < 0.05). In GSD IX only increased TAR was observed (p < 0.05). IKH patient cohorts, both with and without treatment, presented CGM metrics similar to healthy individuals. CONCLUSION: Despite dietary treatment, most liver GSD cohorts do not achieve CGM metrics comparable to healthy individuals. International recommendations on the use of CGM and clinical targets for CGM metrics in liver GSD patients are warranted, both for patient care and clinical trials.