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We report on a qualitative Group Survey study involving four healthcare professionals (HCPs) and eight people living with HIV who were recipients of care in the United Kingdom (UK). The survey aimed to bring participants' perspectives into dialogue and establish consensus about how communication between HCPs delivering HIV care and their patients could be improved in the context of the routine care consultation. Responses from both parties were anonymously collated, thematically analysed, and shared back with participants in two subsequent survey rounds to support consensus-building on matters of concern and identify thematic insights. In this paper, we report three themes for informing future designs of tools and services to support communication between patients and HCPs: Patient-clinician relationship for trusted sharing; Self-reporting psychosocial information to support Whole-person care; and Perceived barriers for online trusted sharing with HCPs. Our findings highlight key areas of concern and further investigation is needed to understand how self-reported information may be meaningfully captured, interpreted and processed by HCPs in ways that are trusted by patients who voice privacy and security concerns.
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Comunicación , Infecciones por VIH , Personal de Salud , Difusión de la Información , Investigación Cualitativa , Humanos , Infecciones por VIH/psicología , Infecciones por VIH/terapia , Masculino , Difusión de la Información/métodos , Femenino , Personal de Salud/psicología , Reino Unido , Adulto , Encuestas y Cuestionarios , Persona de Mediana Edad , Derivación y Consulta , Relaciones Profesional-Paciente , Actitud del Personal de SaludRESUMEN
AIMS: Studies examining the use of specific emotion regulation (ER) strategies in patients with severe alcohol use disorder (AUD) are mainly focused on intergroup comparisons to the detriment of intragroup variability. Yet, these patients are in fact characterized by emotional deficits of varying severity, and we seek to identify different patterns of ER strategies in people with AUD during their first year of abstinence. METHODS: Based on the ER strategies used by a large sample of patients with AUD, we applied cluster analysis to identify the existence of subgroups using distinct patterns of adaptive and nonadaptive strategies. To characterize these groups, we compared their clinical characteristics and then their emotional regulation strategies to those of control consumers. RESULTS: A first cluster, representing 61% of the sample, is constituted by individuals with high adaptive strategy scores and high nonadaptive strategy scores; a second cluster, representing 39% of the sample, corresponds to individuals with low adaptive strategy scores and high nonadaptive strategy scores. The individuals in these two clusters differed in terms of anxiety level and abstinence time. Compared with control consumers, the use of nonadaptive ER strategies remained lower for the two clusters, while the use of adaptative strategies differed. CONCLUSIONS: Our results support the idea of considering the heterogeneity of emotional capacities in individuals with AUD during the first year of abstinence. The identification of these profiles suggests either the existence of different adaptive ER capacities at baseline or a specific recovery of adaptive strategies over this period.
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Alcoholismo , Regulación Emocional , Humanos , Alcoholismo/psicología , Emociones/fisiología , Consumo de Bebidas Alcohólicas , Análisis por Conglomerados , Abstinencia de AlcoholRESUMEN
AIMS: The aim of the study was to compare emotional information processing in patients with severe alcohol use disorder in short-term abstinence (<1 month) and long-term abstinence (at least 6 months to 9 years) with control participants. METHODS: We studied the variation in pupil diameter during the presentation of pictures of human interactions associated with positive, negative or neutral valences. RESULTS: Overall, the results of the short-term abstinent group revealed greater pupil dilation regardless of the valence of the pictures while the pupillary response of long-term abstainers did not differ from the control group. More specifically, according to each valence, the pupil response to neutral pictures was greater for both patient groups than for controls. For the long-term abstainers, a negative correlation was found between the length of abstinence and the pupillary response to emotional stimuli. CONCLUSION: In long-term abstainers group, the high activation by neutral stimuli suggests however some difficulties in the processing of nonemotional stimuli, considered emotional ones and may constitute a potential relapse factor or the maintenance of addiction.
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Abstinencia de Alcohol , Alcoholismo/fisiopatología , Emociones/fisiología , Reflejo Pupilar/fisiología , Adolescente , Adulto , Alcoholismo/psicología , Estudios de Casos y Controles , Emociones/efectos de los fármacos , Humanos , Persona de Mediana Edad , Estimulación Luminosa , Reflejo Pupilar/efectos de los fármacos , Factores de Tiempo , Adulto JovenRESUMEN
Community-based Mental Health (MH) organisations in the United Kingdom (UK) are facing challenges for sustaining in-person service delivery. Without empirical evidence that demonstrates the value of a place-based approach for MH recovery, and the types of resources needed to build nurturing spaces for peer support, community-based MH organisations will struggle to maintain their physical spaces. We present empirical insights from a case study involving interviews with 20 students accessing peer support services at the Recovery College Collective, a community-based MH organisation located in the North East of England. The interview study aims to evidence how a place-based approach can afford MH recovery. We draw from discourses on place-making and interpret our interview findings through an established framework that highlights four mechanisms through which place impacts recovery: place for doing, being, becoming and belonging. We use this framework to structure our findings and highlight key qualities of place for establishing and maintaining MH recovery. Our contribution is two-fold: we address a gap in the literature by providing empirical understandings of how place influences MH recovery, whilst extending previous research by considering the role that place plays in community-based organisations. This is timely because of the challenges faced in securing in-person service delivery post-pandemic, and a shift towards remote service provision models. We highlight key implications: (i) Accessing a physical place dedicated to MH support is vital for people who do not have anywhere else to go and are socially isolated due to their health conditions; (ii) Connecting through peer-to-peer interaction is an integral part of the recovery process, and learning from people with lived experience can inform a place-based approach that best suit their needs; and (iii) Recognising the value of place for MH support, and the resources needed for peer support delivery in the community, will help secure places that our research participants described as lifesaving.
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Servicios Comunitarios de Salud Mental , Recuperación de la Salud Mental , Grupo Paritario , Humanos , Servicios Comunitarios de Salud Mental/métodos , Servicios Comunitarios de Salud Mental/organización & administración , Femenino , Inglaterra , Masculino , Reino Unido , Apoyo Social , Trastornos Mentales/terapia , Investigación Cualitativa , Entrevistas como Asunto , AdultoRESUMEN
The use of digital technology amongst people living with a range of long-term health conditions to support self-management has increased dramatically. More recently, digital health technologies to share and exchange personal health data with others have been investigated. Sharing personal health data with others is not without its risks: sharing data creates threats to the privacy and security of personal data and plays a role in trust, adoption and continued use of digital health technology. Our work aims to inform the design of these digital health technologies by investigating the reported intentions of sharing health data with others, the associated user experiences when using these digital health technologies and the trust, identity, privacy and security (TIPS) considerations for designing digital health technologies that support the trusted sharing of personal health data to support the self-management of long-term health conditions. To address these aims, we conducted a scoping review, analysing over 12,000 papers in the area of digital health technologies. We conducted a reflexive thematic analysis of 17 papers that described digital health technologies that support sharing of personal health data, and extracted design implications that could enhance the future development of trusted, private and secure digital health technologies.
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OBJECTIVES: Patient-generated data (PGData) are an emergent research area and may improve HIV care. The objectives of this scoping review were to synthesise, evaluate and make recommendations based on the available literature regarding PGData use in HIV care. DESIGN: Scoping review. DATA SOURCES: Embase, Medline, CINAHL Plus, Web of Science, Scopus, PsycINFO and Emcare databases. ELIGIBILITY CRITERIA: Studies involving PGData use within HIV care for people living with HIV and/or healthcare professionals (HCPs) published before February 2021. DATA EXTRACTION AND SYNTHESIS: Data were extracted using a table and the Mixed Methods Appraisal Tool was used to assess empirical rigour. We used thematic analysis to evaluate content. RESULTS: 11 articles met the eligibility criteria. Studies were observational, predominantly concerned hypothetical or novel digital platforms, mainly conducted in high-income settings, and had small sample sizes (range=10-160). There were multiple definitions of PGData. In the majority of studies (n=9), participants were people living with HIV, with a few studies including HCPs, informatics specialists or mixed participant groups. Participants living with HIV were aged 23-78 years, mostly men, of diverse ethnicities, and had low educational, health literacy and income levels.We identified four key themes: (1) Perceptions of PGData and associated digital platforms; (2) Opportunities; (3) Anticipated barriers and (4) Potential impact on patient-HCP relationships. CONCLUSIONS: Use of PGData within HIV care warrants further study, especially with regard to digital inequalities, data privacy and security. There is a need for longitudinal data on use within HIV in a variety of settings with a broad range of users, including impact on clinical outcomes. This will allow greater understanding of the role of PGData use in improving the health and well-being of people living with HIV, which is increasingly pertinent as digital healthcare becomes more widespread as a result of COVID-19.
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COVID-19 , Infecciones por VIH , Adulto , Anciano , Etnicidad , Infecciones por VIH/tratamiento farmacológico , Personal de Salud , Humanos , Masculino , Persona de Mediana Edad , SARS-CoV-2 , Adulto JovenRESUMEN
The study aimed to assess whether abstinent individuals with alcohol use disorders (AUD) would benefit from enhanced emotional regulation (ER) strategies using the affect regulation training (ART) program based on weekly sessions comprising psycho-education, muscle and respiratory relaxation, awareness, acceptance and tolerance, compassionate personal support, emotion analysis and modification. Seventy-two participants with AUD benefited from ART and were compared on their ER ability, mindfulness, and their experience of abstinence to 40 participants not receiving the program, before it, at the end, and 6 months after. Improvements in ER were observed, particularly in positive centration, action centration or self-blame and in mindfulness abilities after the program and six months later. In addition, by comparing participants who received the program with a short (<18 months) or long (>18 months) abstinence duration, the results showed a greater decrease in the use of non-adaptive strategies, a greater increase in adaptive strategies and mindfulness abilities in short-term abstinent individuals. These results demonstrate improvement in ER skills after training in people who were abstinent from alcohol. ART is effective for consolidating abstinence and should be used especially at the beginning of withdrawal to promote the rapid implementation of new ER strategies.
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Alcoholismo , Regulación Emocional , Atención Plena , Abstinencia de Alcohol , Alcoholismo/terapia , Humanos , Proyectos PilotoRESUMEN
We assessed the sympathetic and parasympathetic activation associated to the observation of Pantomime (i.e. the mime of the use of a tool) and Intransitive gestures (i.e. expressive) performed toward (e.g. a comb and "thinking") and away from the body (e.g. key and "come here") in a group of healthy participants while both pupil dilation (N = 31) and heart rate variability (N = 33; HF-HRV) were recorded. Large pupil dilation was observed in both Pantomime and Intransitive gestures toward the body; whereas an increase of the vagal suppression was observed in Intransitive gestures away from the body but not in those toward the body. Our results suggest that the space where people act when performing a gesture has an impact on the physiological responses of the observer in relation to the type of social communicative information that the gesture direction conveys, from a more intimate (toward the body) to a more interactive one (away from the body).
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Gestos , Frecuencia Cardíaca/fisiología , Relaciones Interpersonales , Desempeño Psicomotor/fisiología , Pupila/fisiología , Adolescente , Adulto , Femenino , Humanos , Masculino , Fenómenos Fisiológicos del Sistema Nervioso , Adulto JovenRESUMEN
INTRODUCTION: Difficulties in identifying and regulating emotion are recognized as major factors of relapse in alcohol use disorders (AUD). This study aimed to evaluate the differences of emotion regulation processes in AUD patients with short-term (STA, less than one month) and long-term abstinence (LTA, at least six months) by recording the high frequency of Heart Rate Variability (HF-HRV) in response to emotional and neutral stimuli. METHOD: Emotional induction constituted the presentation of highly emotional and neutral pictures (IAPS data base) presenting human interactions. HF-HRV was recorded before (at rest), during (pictures) and after emotional induction (recovery). RESULTS: The results showed higher phasic HF-HRV in the STA group in comparison to the LTA and C groups for negative, positive and neutral stimuli. In the LTA group, we observed a normalization of HRV, in response to emotional stimuli. However, for negative valence stimuli in the recovery period, LTA participants are no more different from STA group. A main positive correlation was observed for both patient groups between craving scores and increased HF-HRV during and after the emotion induction. CONCLUSION: The data support the hypothesis of emotion regulation impairment after STA but also show a partial improvement with prolonged abstinence. This impairment in patients may correspond to the maintenance of negative feedback that accentuates the difficulties in the emotional physiological process and limits the ability to engage in or maintain other processes. HF-HRV is a good indicator of emotion regulation processes related to the intensity of the craving even after long-term abstinence.