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AIM: To evaluate the effect of a parent-administered sensorimotor intervention (PASI) program on developmental outcomes of infants born preterm during their stay in the neonatal intensive care unit (NICU). METHOD: A randomized clinical study was conducted with 94 infants (mean gestational age 31 weeks [SD 2.2 weeks]; 1658 g [SD 478 g]; 49 males, 45 females) initially enrolled and randomly assigned to an experimental or a control group. Infants in the experimental group received a PASI, consisting of tactile input to oral structures, trunk/limbs, and non-nutritive sucking for 15 minutes, once a day, for 10 days. Infants in the control group received standard care. Outcomes included attainment of complete oral feeds, occurrence of direct breastfeeding at hospital discharge, and motor function assessed using the Test of Infant Motor Performance (TIMP). RESULTS: A total of 80 infants completed the study. Infants in the experimental group achieved complete oral feeds sooner (11.9 [SD 4.3] vs 15.3 [SD 6.5] days, p = 0.013), and a greater number of them received direct breastfeeds (22 vs 12, p = 0.010) than controls. Infants in both groups had equivalent motor functions scores on the TIMP (46.9 [SD 4.8], 46.8 [SD 8.4], p = 0.961). INTERPRETATION: A PASI program may enhance an infant's oral feeding skills. These findings provide evidence to advocate for the institution of PASI in NICUs.
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OBJECTIVE: This study aims to explore the perspectives and experiences of Australian caregivers and community pharmacists about pediatric melatonin use. METHODS: A convenience sample of caregivers with children (aged 11-16 years) using melatonin as a sleep aid and community pharmacists (including pharmacist interns) were recruited. Participants first completed an online survey followed by an online semi-structured interview. Interviews were guided by a schedule of questions for the respective participant groups, broadly exploring their beliefs about melatonin, experiences in using/supplying melatonin, and perceived facilitators/barriers for melatonin use. Interviews were digitally recorded, transcribed verbatim, and analyzed using the Framework Approach. RESULTS: Fourteen caregivers of predominantly neurodiverse adolescents and 24 community pharmacists were interviewed. While melatonin was perceived by caregivers of both typically developing and neurodiverse dependants as safer than pharmacological sleep aids, treatment was only initiated after trialling non-pharmacological strategies first. Pharmacists expressed concerns around the ambiguities in practice and the limited scope of existing resources for guiding pediatric melatonin use. Caregivers frequently deferred to the information available online to procure products or self-adjust doses and dosing schedules. Both pharmacists and caregivers emphasized the need for more affordable and age-appropriate proprietary formulations that are readily accessible. CONCLUSION: Melatonin is administered predominantly by caregivers of neurodiverse adolescents to address their sleep disturbances. The findings underscore the need for reliable, evidence-based information to guide safe and appropriate use of melatonin in pediatric populations. Patient education is also warranted to address maladaptive medication-administration practices. Lastly, there is a need for stronger regulatory oversight of melatonin products to ensure their quality and safety of use.
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Cuidadores , Melatonina , Farmacéuticos , Humanos , Melatonina/administración & dosificación , Adolescente , Niño , Cuidadores/psicología , Farmacéuticos/estadística & datos numéricos , Femenino , Masculino , Australia , Encuestas y Cuestionarios , AdultoRESUMEN
Chronic illness can disrupt many aspects of life, including identity, social relationships, and anticipated life trajectories. Despite significant scholarship on chronic illness, we know less about the ways in which chronic illness impacts feelings of loneliness and how people with chronic illness deal with loneliness. Drawing on concepts of biographical disruption and liminality and data from walking and photo-elicitation interviews with 14 people, we aimed to explore how people with chronic illness experience loneliness in their everyday lives. Tracing how past and present illness experiences are implicated in the lived experience of loneliness and the strategies people use to manage loneliness, our findings illustrated that being caught in a liminal state where participants struggled to maintain and adapt to a new normality in life with chronic illness was a central thread woven throughout their experience of loneliness. Although participants drew on their personal agency and adopted strategies to account for, manage, and limit disruptions from chronic illness and loneliness, they found that their strategies were not completely effective or satisfactory. Chronic illness and loneliness continue to be largely considered as an individual's problem, limiting opportunities for people with chronic illness who experience loneliness to seek support and social connection. Our research highlighted that chronic illness and loneliness need to be acknowledged as both a personal and collective problem, with multi-level responses that involve individuals, communities, and society.
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BACKGROUND: Partnering with consumers in the planning, delivery and evaluation of health services is an essential component of person-centred care. There are many ways to partner with consumers to improve health services, including formal group partnerships (such as committees, boards or steering groups). However, consumers' and health providers' views and experiences of formal group partnerships remain unclear. In this qualitative evidence synthesis (QES), we focus specifically on formal group partnerships where health providers and consumers share decision-making about planning, delivering and/or evaluating health services. Formal group partnerships were selected because they are widely used throughout the world to improve person-centred care. For the purposes of this QES, the term 'consumer' refers to a person who is a patient, carer or community member who brings their perspective to health service partnerships. 'Health provider' refers to a person with a health policy, management, administrative or clinical role who participates in formal partnerships in an advisory or representative capacity. This QES was co-produced with a Stakeholder Panel of consumers and health providers. The QES was undertaken concurrently with a Cochrane intervention review entitled Effects of consumers and health providers working in partnership on health services planning, delivery and evaluation. OBJECTIVES: 1. To synthesise the views and experiences of consumers and health providers of formal partnership approaches that aimed to improve planning, delivery or evaluation of health services. 2. To identify best practice principles for formal partnership approaches in health services by understanding consumers' and health providers' views and experiences. SEARCH METHODS: We searched MEDLINE, Embase, PsycINFO and CINAHL for studies published between January 2000 and October 2018. We also searched grey literature sources including websites of relevant research and policy organisations involved in promoting person-centred care. SELECTION CRITERIA: We included qualitative studies that explored consumers' and health providers' perceptions and experiences of partnering in formal group formats to improve the planning, delivery or evaluation of health services. DATA COLLECTION AND ANALYSIS: Following completion of abstract and full-text screening, we used purposive sampling to select a sample of eligible studies that covered a range of pre-defined criteria, including rich data, range of countries and country income level, settings, participants, and types of partnership activities. A Framework Synthesis approach was used to synthesise the findings of the sample. We appraised the quality of each study using the CASP (Critical Appraisal Skill Program) tool. We assessed our confidence in the findings using the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach. The Stakeholder Panel was involved in each stage of the review from development of the protocol to development of the best practice principles. MAIN RESULTS: We found 182 studies that were eligible for inclusion. From this group, we selected 33 studies to include in the final synthesis. These studies came from a wide range of countries including 28 from high-income countries and five from low- or middle-income countries (LMICs). Each of the studies included the experiences and views of consumers and/or health providers of partnering in formal group formats. The results were divided into the following categories. Contextual factors influencing partnerships: government policy, policy implementation processes and funding, as well as the organisational context of the health service, could facilitate or impede partnering (moderate level of confidence). Consumer recruitment: consumer recruitment occurred in different ways and consumers managed the recruitment process in a minority of studies only (high level of confidence). Recruiting a range of consumers who were reflective of the clinic's demographic population was considered desirable, particularly by health providers (high level of confidence). Some health providers perceived that individual consumers' experiences were not generalisable to the broader population whereas consumers perceived it could be problematic to aim to represent a broad range of community views (high level of confidence). Partnership dynamics and processes: positive interpersonal dynamics between health providers and consumers facilitated partnerships (high level of confidence). However, formal meeting formats and lack of clarity about the consumer role could constrain consumers' involvement (high level of confidence). Health providers' professional status, technical knowledge and use of jargon were intimidating for some consumers (high level of confidence) and consumers could feel their experiential knowledge was not valued (moderate level of confidence). Consumers could also become frustrated when health providers dominated the meeting agenda (moderate level of confidence) and when they experienced token involvement, such as a lack of decision-making power (high level of confidence) Perceived impacts on partnership participants: partnering could affect health provider and consumer participants in both positive and negative ways (high level of confidence). Perceived impacts on health service planning, delivery and evaluation: partnering was perceived to improve the person-centredness of health service culture (high level of confidence), improve the built environment of the health service (high level of confidence), improve health service design and delivery e.g. facilitate 'out of hours' services or treatment closer to home (high level of confidence), enhance community ownership of health services, particularly in LMICs (moderate level of confidence), and improve consumer involvement in strategic decision-making, under certain conditions (moderate level of confidence). There was limited evidence suggesting partnering may improve health service evaluation (very low level of confidence). Best practice principles for formal partnering to promote person-centred care were developed from these findings. The principles were developed collaboratively with the Stakeholder Panel and included leadership and health service culture; diversity; equity; mutual respect; shared vision and regular communication; shared agendas and decision-making; influence and sustainability. AUTHORS' CONCLUSIONS: Successful formal group partnerships with consumers require health providers to continually reflect and address power imbalances that may constrain consumers' participation. Such imbalances may be particularly acute in recruitment procedures, meeting structure and content and decision-making processes. Formal group partnerships were perceived to improve the physical environment of health services, the person-centredness of health service culture and health service design and delivery. Implementing the best practice principles may help to address power imbalances, strengthen formal partnering, improve the experiences of consumers and health providers and positively affect partnership outcomes.
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Personal de Salud , Servicios de Salud , Humanos , Participación de la Comunidad , CuidadoresRESUMEN
The non-consensual sharing of private sexual images (so-called 'revenge pornography') has become an increasingly prominent topic in social and legislative discussions about sexual crime but has received relatively little attention within psychological research. Here, we leveraged existing theorizing in the area of sexual offending proclivity to systematically develop and validate a measure of beliefs about this type of offending. There is currently a lack of validated assessment tools in this area, and these are important to better understand the role of offense-supportive cognition in predicting both proclivity of these offenses and judgements of both victims and perpetrators. Using an international community sample (N = 511) we found our 'Beliefs about Revenge Pornography Questionnaire (BRPQ)' to be comprised of four underpinning domains: 'Victims as Promiscuous', 'Victim Harm', 'Avoiding Vulnerable Behaviors' and 'Offense Minimization'. Concurrent validity is demonstrated through relationships with trait empathy, belief in a just world, dark personality traits and rape myth acceptance. Randomly dividing the sample, we also show that the BRPQ was associated with both proclivity (n = 227) and social judgements of this type of offending (n = 232). Implications and future directions are discussed. An open-access preprint is available at https://psyarxiv.com/6qr7t/.
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Víctimas de Crimen , Violación , Delitos Sexuales , Humanos , Factores de Riesgo , Literatura Erótica/psicología , Delitos Sexuales/psicología , Violación/psicología , Encuestas y CuestionariosRESUMEN
OBJECTIVE: We evaluated the influence of sex on the pathophysiology of non-alcoholic fatty liver disease (NAFLD). We investigated diet-induced phenotypic responses to define sex-specific regulation between healthy liver and NAFLD to identify influential pathways in different preclinical murine models and their relevance in humans. DESIGN: Different models of diet-induced NAFLD (high-fat diet, choline-deficient high-fat diet, Western diet or Western diet supplemented with fructose and glucose in drinking water) were compared with a control diet in male and female mice. We performed metabolic phenotyping, including plasma biochemistry and liver histology, untargeted large-scale approaches (liver metabolome, lipidome and transcriptome), gene expression profiling and network analysis to identify sex-specific pathways in the mouse liver. RESULTS: The different diets induced sex-specific responses that illustrated an increased susceptibility to NAFLD in male mice. The most severe lipid accumulation and inflammation/fibrosis occurred in males receiving the high-fat diet and Western diet, respectively. Sex-biased hepatic gene signatures were identified for these different dietary challenges. The peroxisome proliferator-activated receptor α (PPARα) co-expression network was identified as sexually dimorphic, and in vivo experiments in mice demonstrated that hepatocyte PPARα determines a sex-specific response to fasting and treatment with pemafibrate, a selective PPARα agonist. Liver molecular signatures in humans also provided evidence of sexually dimorphic gene expression profiles and the sex-specific co-expression network for PPARα. CONCLUSIONS: These findings underscore the sex specificity of NAFLD pathophysiology in preclinical studies and identify PPARα as a pivotal, sexually dimorphic, pharmacological target. TRIAL REGISTRATION NUMBER: NCT02390232.
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Enfermedad del Hígado Graso no Alcohólico , Animales , Dieta Alta en Grasa/efectos adversos , Modelos Animales de Enfermedad , Femenino , Humanos , Metabolismo de los Lípidos , Hígado/metabolismo , Masculino , Ratones , Ratones Endogámicos C57BL , Enfermedad del Hígado Graso no Alcohólico/metabolismo , PPAR alfa/metabolismoRESUMEN
RATIONALE, AIMS, AND OBJECTIVES: Chronic pain is a global public health problem that negatively impacts individuals' quality of life and imposes a substantial economic burden on societies. The use of medicinal cannabis (MC) is often considered by patients to help manage chronic pain as an alternative or supplement to more conventional treatments, given enabling legalization in a number of countries. However, healthcare professionals involved in providing guidance for patients related to MC are often doing so in the absence of strong evidence and clinical guidelines. Therefore, it is crucial to understand their perspectives regarding the clinical use and relevance of MC for chronic pain. As little is known about attitudes of HCPs with regard to MC use for chronic pain specifically, the aim of this review was to identify and synthesize the published evidence on this topic. METHODS: A systematic search was conducted across six databases: MEDLINE, EMBASE, CINAHL, Scopus, Web of Science, and PubMed from 2001 to March 26, 2021. Three authors independently performed the study selection and data extraction. Thematic analysis was undertaken to identify key themes. RESULTS: A total of 26 studies were included, involving the United States, Israel, Canada, Australia, Ireland, and Norway, and the perspectives of physicians, nurses, and pharmacists. Seven key themes were identified: MC as a treatment option for chronic pain, and perceived indicated uses; willingness to prescribe MC; legal issues; low perceived knowledge and the need for education; comparative safety of MC versus opioids; addiction and abuse; and perceived adverse effects; CONCLUSION: To support best practice in the use of MC for chronic pain, healthcare professionals require education and training, as well as clinical guidelines that provide evidence-based information about efficacy, safety, and appropriate dosage of products for this indication. Until these gaps are addressed, healthcare professionals will be limited in their capacity to make treatment recommendations about MC for people/patients with chronic pain.
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Dolor Crónico , Marihuana Medicinal , Humanos , Dolor Crónico/tratamiento farmacológico , Marihuana Medicinal/uso terapéutico , Calidad de Vida , Personal de Salud , Atención a la SaludRESUMEN
BACKGROUND: Severe asthma, that is, asthma that is relatively refractory to conventional therapy, affects 3-10% of the asthma population. It is associated with a significant burden affecting social and working life. Supporting the need for relatedness facilitates health behavior change and improves overall well-being. However, this has not been closely examined from the patients' perspective. This study examines relatedness in patients' narratives about their experiences of living with and managing severe asthma. METHODS: Rigorous and systematic qualitative research methods were used to conduct in-depth semi-structured interviews. Participants were included if they were ≥18 years old and diagnosed with severe asthma. Interviews were video and/or audio recorded, transcribed, and analyzed inductively and deductively informed by the self-determination theory construct of relatedness. Thirty-eight face-to-face interviews, lasting 1.5 - 4 hours, were conducted around Australia. RESULTS: Our findings show that living with a debilitating and unpredictable illness challenged participants' sense of relatedness. Two themes emerged: 1) the desire to be understood: feeling isolated and 2) the desire to be accepted: 'I'm supposed to be like everybody else'. For people living with severe asthma, feeling cared for, understood, connected to others and having a sense of belonging was valued. Their overall psychological well-being was dependent upon their sense of connection to others. CONCLUSION: Future research should consider our findings of the challenges faced to preserve their sense of relatedness, when developing and implementing patient-driven self-management interventions for those living with severe asthma.
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Asma/psicología , Relaciones Interpersonales , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Índice de Severidad de la Enfermedad , Adulto JovenRESUMEN
Objective: This pilot aimed to test the engagement, acceptability, and usefulness of a goal-setting smartphone app, Kiss myAsthma, in young people with asthma.Methods: Young people aged 15-24 years old were invited to trial a smartphone app for asthma management. A mixed-methods approach combined quantitative analysis of self-report questionnaires and app usage log data with qualitative thematic analysis of open-ended questions at baseline and six weeks after downloading the app. App log data (pages visited, frequency of use and content of participants interaction, e.g.goals set, symptoms recorded) were analyzed.Results: Nine of 12 participants completed both baseline and six-week questionnaires. Participants reported high satisfaction with app content and usability (median score 5 out of 6 [range 4-6]) and rated the app highly on "feeling confident in my ability to manage my asthma." At six weeks there was a clinically significant change in asthma quality of life (e.g. Emotional Function domain score baseline: 4.7 [2.7-6.3], follow-up: 5.7 [4.7-6.7]; p = 0.043). Participants logged information about asthma severity, flare-ups and mood and tracked their symptoms with the app's History functionality. Five participants (42%) nominated goals and strategies and 3 participants (25%) entered data in the Inspiration section, a tool to support intrinsic motivation to manage asthma. Qualitative data aligned with quantitative results.Conclusions: This six-week pilot of the Kiss myAsthma app showed its potential to support self-management, quality of life and health behavior change in young people with asthma.
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Asma/terapia , Aplicaciones Móviles , Adolescente , Afecto , Asma/fisiopatología , Asma/psicología , Femenino , Objetivos , Humanos , Masculino , Satisfacción del Paciente , Proyectos Piloto , Calidad de Vida , Automanejo , Índice de Severidad de la Enfermedad , Teléfono Inteligente , Adulto JovenRESUMEN
There is a public health epidemic in adolescents' use of Electronic Nicotine Delivery Systems (ENDSs), also known as electronic cigarettes, vaping products, or JUULs. However, little is known about the level of knowledge school staff have about ENDS. The purpose of this study is to examine outcomes of a nurse-led educational intervention designed to increase school staff knowledge about ENDS. A descriptive, nonrandomly selected pre-test/post-test design was used with 125 Wisconsin school staff. Results revealed further educational needs of school staff in content areas including advertising to youth and flavoring of ENDS. Following the educational intervention, post-test results showed a significant overall improvement in participant knowledge scores. Recommendations include implementing nurse-led education about ENDS to a more diverse population of school staff. Providing nurse-led ENDS education to school staff offers an upstream, proactive approach for school nurses to help address this public health epidemic.
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Current fructose consumption levels often overwhelm the intestinal capacity to absorb fructose. We investigated the impact of fructose malabsorption on intestinal endocrine function and addressed the role of the microbiota in this process. To answer this question, a mouse model of moderate fructose malabsorption [ketohexokinase mutant (KHK)-/-] and wild-type (WT) littermate mice were used and received a 20%-fructose (KHK-F and WT-F) or 20%-glucose diet. Cholecystokinin (Cck) mRNA and protein expression in the ileum and cecum, as well as preproglucagon (Gcg) and neurotensin (Nts) mRNA expression in the cecum, increased in KHK-F mice. In KHK-F mice, triple-label immunohistochemistry showed major up-regulation of CCK in enteroendocrine cells (EECs) that were glucagon-like peptide-1 (GLP-1)+/Peptide YY (PYY-) in the ileum and colon and GLP-1-/PYY- in the cecum. The cecal microbiota composition was drastically modified in the KHK-F in association with an increase in glucose, propionate, succinate, and lactate concentrations. Antibiotic treatment abolished fructose malabsorption-dependent induction of cecal Cck mRNA expression and, in mouse GLUTag and human NCI-H716 cells, Cck mRNA expression levels increased in response to propionate, both suggesting a microbiota-dependent process. Fructose reaching the lower intestine can modify the composition and metabolism of the microbiota, thereby stimulating the production of CCK from the EECs possibly in response to propionate.-Zhang, X., Grosfeld, A., Williams, E., Vasiliauskas, D., Barretto, S., Smith, L., Mariadassou, M., Philippe, C., Devime, F., Melchior, C., Gourcerol, G., Dourmap, N., Lapaque, N., Larraufie, P., Blottière, H. M., Herberden, C., Gerard, P., Rehfeld, J. F., Ferraris, R. P., Fritton, J. C., Ellero-Simatos, S., Douard, V. Fructose malabsorption induces cholecystokinin expression in the ileum and cecum by changing microbiota composition and metabolism.
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Ciego/metabolismo , Colecistoquinina/metabolismo , Fructosa/metabolismo , Fructosa/farmacología , Microbioma Gastrointestinal/efectos de los fármacos , Íleon/metabolismo , Animales , Ciego/efectos de los fármacos , Línea Celular , Fructoquinasas/genética , Fructoquinasas/metabolismo , Fructosa/administración & dosificación , Regulación de la Expresión Génica/efectos de los fármacos , Humanos , Íleon/efectos de los fármacos , Ratones , Ratones NoqueadosRESUMEN
Objective: Patients' perceptions about their asthma can influence behavior, coping and outcomes. Previous studies have also identified that patients' views can differ significantly to that of healthcare professionals. Enhancing current understanding of patients' perceptions can assist in reducing this mismatch. We aimed to utilize the medium of drawings to add qualitative specificity and depth to a quantitative measure of illness perceptions exploring patients' perspectives of their asthma. Methods: Eighteen adults with asthma completed the Brief Illness Perception Questionnaire (BIPQ) and participated in a drawing activity. Analysis was based on the participants' transcribed descriptions of their drawing. A coding approach was used to map the data according to the BIPQ items. Results: The drawings and subsequent discussions specified the "what," the "how," and the "why" of the experience of living with asthma. Prominent emotional and social elements emerged, with evocative images coupled with expressive and profound language. Use of drawing also revealed additional representations which were outside of the BIPQ scope. Conclusions: Using qualitative methods to analyze a novel approach to understanding illness perceptions provided insight into how asthma affects patients' lives personally.
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Adaptación Psicológica , Arteterapia/métodos , Asma/terapia , Emociones , Percepción , Adulto , Anciano , Asma/diagnóstico , Asma/psicología , Australia , Estudios de Evaluación como Asunto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Obras Pictóricas como Asunto/psicología , Psicometría , Calidad de Vida , Adulto JovenRESUMEN
The literature has identified promising findings regarding the application of arts-based initiatives to enhance healthcare professional (HCP) training. Research shows that drawings offer a window into the authentic, insider view of health and illness, with potential to be a platform for healthcare student and HCP learning. In addition, drawings may also have a place in health communication. Our previous work provides support for the educational application of patients' drawings in bringing HCPs closer to the patient's lived experience. Subsequently, this study aimed to explore university educators' opinions regarding the implementation of drawings as an educational tool for higher education healthcare students. The objective of this study was to explore pathways for using drawings as an art form in an educational context, and provide recommendations for developing curricula and resources for further evaluation. Findings from focus group interviews with nine university educators revealed support for the use of drawings as a novel medium as they offer rich insights into the patient's perspective while encouraging creative and critical thinking. Key perceived benefits were that drawings foster student appreciation of (1) the holistic impact of illness, (2) the importance of patients' priorities and (3) the value of learning from the patient. Patients' drawings of their experiences would offer needed opportunities for students to explicitly reflect about the 'person' holistically rather than view the patient as a 'biomedical problem'. Shifting students' perspectives and possible assumptions to be better aligned with and appreciative of the patient's experiences was noted as central to adopting a person-centred approach to healthcare practice. Our findings suggest that incorporating drawings, or indeed other art forms, as educational tools would be a valuable addition to the health curricula.
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Curriculum , Universidades , Grupos Focales , Personal de Salud/educación , Humanos , EstudiantesRESUMEN
OBJECTIVE: Our aim was to conduct a systematic review and synthesis of qualitative evidence exploring the lived experience of adults with severe asthma. DATA SOURCES: We searched MEDLINE via OvidSP, PsycINFO via OvidSP, PubMed, CINAHL, EMBASE, Sociological Abstracts, Google Scholar, the journals Qualitative Health Research and Qualitative Research, and a study of experiences of living with asthma by the Health Experiences Research group. STUDY SELECTIONS: Studies were included if they used qualitative methods and explored the subjective experiences of adults (≥18 years) with a clear diagnosis of severe asthma. RESULTS: From 575 identified studies, five met the inclusion criteria. Synthesis revealed an overarching theme of efforts that people living with severe asthma engage in to achieve personal control over their condition. Individuals 'strive for autonomy' through dealing with symptoms and treatment, acquiring knowledge, making decisions and reclaiming identity. CONCLUSION: This systematic review found a paucity of qualitative studies reporting on people's perspectives of living with severe asthma, and a focus on clinical rather than personal issues. Our synthesis reveals that severe asthma was disempowering, and a threat to identity and life roles. What was important to people living with severe asthma was striving to achieve a greater level of personal control over their condition, but these efforts received little support from their healthcare providers. Thus, more attention should be paid to understanding the self-management strategies and personal goals of people living with severe asthma. This may assist in designing interventions to better support patient self-management and improve health outcomes.
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Asma/psicología , Toma de Decisiones , Humanos , Educación del Paciente como Asunto , Autonomía Personal , Investigación Cualitativa , Calidad de Vida , Índice de Severidad de la EnfermedadRESUMEN
BACKGROUND: People living with severe asthma may have ongoing debilitating symptoms despite high-dose treatment. Clinical guidelines for severe asthma recommend concepts such as patient centeredness, shared decision making and self-management, at the heart of which lies autonomy. OBJECTIVE: This study aimed to explore the role of autonomy in patients' narratives about their experiences of living with and managing severe asthma. METHODS: In-depth semi-structured interviews were video- and/or audio-recorded and transcribed. Data were categorized using a hybrid approach to analysis incorporating both inductive and deductive methods, informed by the self-determination construct of autonomy. Analysis and comparison across and within categories were conducted to develop final themes. RESULTS: Twenty-nine face-to-face interviews, lasting 1.5-4 hours, were conducted across Australia. Patients' autonomy was enacted or challenged in a range of situations, such as interacting with health-care providers, maintaining employment, managing symptoms, and dealing with threats to self-identity. Two main themes were discerned from the analysis: (a) the desire to live an "unconstrained" life; and (b) preservation of self-identity. CONCLUSION: Our findings suggest that autonomy is broader than conventional medical concepts such as decision making and information seeking. Future research should consider these findings when developing and implementing patient-driven self-management interventions for those living with severe asthma.
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Asma/prevención & control , Autonomía Personal , Adulto , Anciano , Australia , Toma de Decisiones Conjunta , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Índice de Severidad de la EnfermedadRESUMEN
BACKGROUND: One model of care that has not been tested for chronic low back pain (LBP) is patient-led goal setting. We aimed to compare the clinical effectiveness and healthcare use of a patient-led goal setting approach (intervention) with simple advice to exercise (control) over 12 months. METHODS: An assessor-blinded randomised controlled trial. Intervention was education combined with patient-led goal setting compared with a control group receiving a standardised exercise programme. The primary outcomes were back pain disability and pain intensity. Secondary outcomes were quality of life, kinesiophobia, self-efficacy, depression, anxiety and stress. Outcomes and healthcare use were assessed immediately post-treatment (2 months) and after 4 and 12 months. Analysis was by intention to treat. RESULTS: Seventy-five patients were randomly assigned to either the intervention (n=37) or the control (n=38) group. Using linear mixed model analyses, adjusted mean changes in primary outcomes of disability and pain intensity were greater in the intervention group than in the control group (disability post-treatment: p<0.05). These differences were clinically meaningful. Mean differences in all secondary measures were greater in the intervention group than in the control group (p<0.05). There was no difference in healthcare use between groups over 12 months. CONCLUSION: A patient-led goal setting intervention was significantly more effective than advice to exercise for improving outcomes in disability, pain intensity, quality of life, self-efficacy and kinesiophobia in chronic LBP. These improvements were maintained at 12 months. Smaller effects were seen in measures of depression, anxiety and stress. TRIAL REGISTRATION NUMBER: ACTRN12614000830695.
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Objetivos , Dolor de la Región Lumbar/terapia , Educación del Paciente como Asunto/métodos , Adulto , Ansiedad , Dolor Crónico/terapia , Depresión , Evaluación de la Discapacidad , Femenino , Humanos , Modelos Lineales , Masculino , Persona de Mediana Edad , Dimensión del Dolor , Calidad de Vida , Autoeficacia , Estrés Psicológico , Resultado del TratamientoRESUMEN
A person-centered approach to goal-setting, involving collaboration between patients and health professionals, is advocated in policy to support self-management. However, this is difficult to achieve in practice, reducing the potential effectiveness of self-management support. Drawing on observations of consultations between patients and health professionals, we examined how goal-setting is shaped in patient-provider interactions. Analysis revealed three distinct interactional styles. In controlled interactions, health professionals determine patients' goals based on biomedical reference points and present these goals as something patients should do. In constrained interactions, patients are invited to present goals, yet health professionals' language and questions orientate goals toward biomedical issues. In flexible interactions, patients and professionals both contribute to goal-setting, as health professionals use less directive language, create openings, and allow patients to decide on their goals. Findings suggest that interactional style of health professionals could be the focus of interventions when aiming to increase the effectiveness of goal-setting.
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Objetivos , Participación del Paciente/psicología , Relaciones Profesional-Paciente , Automanejo/métodos , Conducta , Enfermedad Crónica/terapia , Comunicación , Personal de Salud , Humanos , Participación del Paciente/métodosRESUMEN
The pregnane X receptor (PXR) is the main nuclear receptor regulating the expression of xenobiotic-metabolizing enzymes and is highly expressed in the liver and intestine. Recent studies have highlighted its additional role in lipid homeostasis, however, the mechanisms of these regulations are not fully elucidated. We investigated the transcriptomic signature of PXR activation in the liver of adult wild-type vs. Pxr-/- C57Bl6/J male mice treated with the rodent specific ligand pregnenolone 16α-carbonitrile (PCN). PXR activation increased liver triglyceride accumulation and significantly regulated the expression of 1215 genes, mostly xenobiotic-metabolizing enzymes. Among the down-regulated genes, we identified a strong peroxisome proliferator-activated receptor α (PPARα) signature. Comparison of this signature with a list of fasting-induced PPARα target genes confirmed that PXR activation decreased the expression of more than 25 PPARα target genes, among which was the hepatokine fibroblast growth factor 21 (Fgf21). PXR activation abolished plasmatic levels of FGF21. We provide a comprehensive signature of PXR activation in the liver and identify new PXR target genes that might be involved in the steatogenic effect of PXR. Moreover, we show that PXR activation down-regulates hepatic PPARα activity and FGF21 circulation, which could participate in the pleiotropic role of PXR in energy homeostasis.
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Factores de Crecimiento de Fibroblastos/metabolismo , Hígado/metabolismo , PPAR alfa/metabolismo , Receptor X de Pregnano/metabolismo , Animales , Factores de Crecimiento de Fibroblastos/genética , Eliminación de Gen , Perfilación de la Expresión Génica , Masculino , Ratones Endogámicos C57BL , Receptor X de Pregnano/genética , Activación Transcripcional , TranscriptomaRESUMEN
Background and Objectives: People have multi-faceted health care needs and consult a diverse range of health care practitioners (HCP) from both the conventional and complementary medicine healthcare sectors. The effective communication between HCP and with patients are obvious requisites to coordinating multidisciplinary care and shared decision making. Further, miscommunication is a leading cause of patient harm and is associated with reduced patient satisfaction, health literacy, treatment compliance and quality of life. In conventional healthcare settings, the differences in professional hierarchy, training, communication styles and culture are recognised communication barriers. Less is known about interprofessional communication (IPC) that includes traditional and complementary medicine (TCM) HCP. This review aims to summarise the experiences and perceptions of conventional and complementary HCP and identify factors that influence IPC. Methods: A qualitative rapid literature review was conducted. Six databases were searched to identify original research and systematic reviews published since 2009 and in English. Excluded were articles reporting original research outside of Australia that did not include TCM-HCP, already cited in a systematic review, or of low quality with a score of less than three on a critical appraisal skills programme (CASP) checklist. A thematic analysis of included studies was used to identify and explore important and recurring themes. Results: From the conducted searches, 18 articles were included, 11 of which reported data on complementary HCP and seven were literature reviews. Four key themes were identified that impact IPC: medical dominance, clarity of HCP roles, a shared vision, and education and training. Conclusion: IPC within and between conventional and complementary HCP is impacted by interrelated factors. A diverse range of initiatives that facilitate interprofessional learning and collaboration are required to facilitate IPC and help overcome medical dominance and interprofessional cultural divides.
Asunto(s)
Actitud del Personal de Salud , Relaciones Interprofesionales , Terapias Complementarias/normas , Conducta Cooperativa , Personal de Salud/educación , Personal de Salud/psicología , Humanos , Rol Profesional , Investigación CualitativaRESUMEN
Could some vaccines drive the evolution of more virulent pathogens? Conventional wisdom is that natural selection will remove highly lethal pathogens if host death greatly reduces transmission. Vaccines that keep hosts alive but still allow transmission could thus allow very virulent strains to circulate in a population. Here we show experimentally that immunization of chickens against Marek's disease virus enhances the fitness of more virulent strains, making it possible for hyperpathogenic strains to transmit. Immunity elicited by direct vaccination or by maternal vaccination prolongs host survival but does not prevent infection, viral replication or transmission, thus extending the infectious periods of strains otherwise too lethal to persist. Our data show that anti-disease vaccines that do not prevent transmission can create conditions that promote the emergence of pathogen strains that cause more severe disease in unvaccinated hosts.