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1.
Radiography (Lond) ; 2024 Jul 01.
Article in English | MEDLINE | ID: mdl-38955645

ABSTRACT

INTRODUCTION: Radiotherapy (RT) clinical trials allow patients to access cutting-edge innovative cancer treatments. Clinical Research Therapy Radiographers (CRRs) play an important role in the management and care of RT trial patients. The COVID-19 pandemic caused major disruption to RT trial delivery. Measures to mitigate COVID-19 risk continue to have an effect on patient contact and communication within cancer centres in the United Kingdom (UK). This study aimed to explore patient perspectives regarding their recent RT trial experience in Northern Ireland (NI), UK. METHODS: A single centre service evaluation was conducted in NI. Patients who were recruited into a RT clinical trial from January 2020 to January 2023 were invited to participate. Surveys were posted to 50 participants in April 2023. Quantitative and qualitative data was captured and analysed using descriptive statistics and Braun and Clarke's six-step thematic analysis framework respectively. Ethical approval was obtained through Ulster University and the NHS Trust. RESULTS: Forty-three of the 50 invited participants responded (86%). Forty-two respondents (79%) had a prostate cancer diagnosis. Forty-one (98%) participants indicated that CRRs were always approachable, polite and courteous and would recommend taking part in a RT trial to friends and family. Identified areas for improvement included aspects regarding consent and participant decision-making. CONCLUSION: This study suggests that despite the implemented measures to suspend research and mitigate COVID-19 risk, patients remained highly satisfied with the quality of care that they received through their participation in RT trials. IMPLICATIONS FOR PRACTICE: The results of this service evaluation will facilitate maintenance and improvement of patient focused delivery of cancer trials within the host centre. This study builds on evidence highlighting the importance of the CRR role and role development for radiographers.

2.
J Clin Nurs ; 2024 Jul 01.
Article in English | MEDLINE | ID: mdl-38951123

ABSTRACT

AIM: To explore how patients with hospital experience construct patient safety, from the identification of a patient safety risk to the decision to file a complaint. BACKGROUND: Patients play an important role in the prevention of adverse events in hospitals, but the ability of patients to act and influence their own safety is still challenged by multiple factors. Understanding how patients perceive risk and act to prevent harm may shed light on how to enhance patients' opportunities to participate in patient safety. DESIGN: The research design of this study is qualitative and exploratory. METHODS: Twelve participants who had experienced Swedish hospital care were interviewed between June 2022 and July 2023. The method of analysis was constructivist grounded theory, focusing on social processes. The COREQ checklist for qualitative research was followed. RESULTS: Four categories were constructed: (1) defining the boundary between one's own capacity and that of the hospital, (2) acting to minimize the impact on one's safety, (3) finding oneself in the hands of healthcare professionals and (4) exploring the boundaries between normality and abnormality of the situation. This process was captured in the core category of navigating the path of least suffering. This illustrated how the participants constructed meaning about patient safety risks and showed that they prevented multiple adverse events. CONCLUSIONS: Provided that participants were able to act independently, they avoided a multitude of adverse events. When they were dependent on healthcare professionals, their safety became more vulnerable. Failure to respond to the participants' concerns could lead to long-term suffering. RELEVANCE TO CLINICAL PRACTICE: By responding immediately to patients' concerns about their safety, healthcare professionals can help prevent avoidable suffering and exhaustive searching for someone in the healthcare system who will take their needs seriously. PATIENT CONTRIBUTION: A member check was performed with the help of one of the participants who read the findings to confirm familiarity.

3.
Front Public Health ; 12: 1363450, 2024.
Article in English | MEDLINE | ID: mdl-38952734

ABSTRACT

Background: The number of clinical nurses in China experiencing professional burnout is increasing yearly, posing a serious challenge to the public health sector. Implementing effective intervention strategies is key to reducing the level of occupational burnout. At present, training aimed at alleviating occupational burnout among clinical nurses is very limited, with common training programs focusing on addressing external factors of occupational burnout rather than the internal cognitive issues of clinical nurses. Self-efficacy and future time perspective are both aspects of an individual's internal self-cognition. Meanwhile, the relationship between clinical nurses' self-efficacy, future time perspective, and occupational burnout is not clear, and further research is needed to verify this. Objective: This study aims to reveal the relationship between clinical nurses' self-efficacy, future time perspective, and occupational burnout, and to explore the mediating role of future time perspective between self-efficacy and occupational burnout among clinical nurses, providing a scientific reference for training directions to improve occupational burnout. Methods: This study used a cross-sectional design, conducting a questionnaire survey with 529 practicing clinical nurses using the General Demographics Questionnaire (GDQ), the General Self-Efficacy Scale (GSES), the Zimbardo Time Perspective Inventory (ZTPI), and the Maslach Burnout Inventory-General Survey (MBI-GS). SPSS software version 26.0 was used to analyze the correlation between variables, and AMOS 26.0 was used to test the mediation effect. Results: Clinical nurses' self-efficacy had a negative predictive effect on occupational burnout (r = -0.503, p < 0.001). Future time perspective showed significant differences in regression coefficients on both the paths of self-efficacy (r = 0.615, p < 0.001) and occupational burnout (r = -0.374, p < 0.001). Future time perspective played a partial mediating role between self-efficacy and occupational burnout, accounting for 33.8% of the total effect. Conclusion: This study suggests a significant correlation between clinical nurses' self-efficacy, future time perspective, and occupational burnout. Self-efficacy can directly affect occupational burnout in clinical nurses and can also indirectly affect occupational burnout through the future time perspective.


Subject(s)
Burnout, Professional , Self Efficacy , Humans , Burnout, Professional/psychology , Adult , Female , Surveys and Questionnaires , Male , China , Cross-Sectional Studies , Nurses/psychology , Middle Aged
4.
Patient Prefer Adherence ; 18: 1299-1310, 2024.
Article in English | MEDLINE | ID: mdl-38947870

ABSTRACT

Purpose: Psoriasis is a highly debilitating chronic inflammatory disease. Increased understanding of its pathophysiology has enabled development of targeted treatments such as biologics. Several medical treatments have been shown to be influenced by patients' experiences and expectations. However, only little is known about patients' experiences with and expectations towards biologics. Our objectives were to identify patients' treatment experiences and treatment expectations and assess their trajectories over the course of treatment with the IL-17A inhibitor secukinumab. Moreover, we aimed to document effects of psoriasis, factors that influence symptomatology, and prior treatment experiences. Patients and Methods: We conducted semi-structured interviews with n = 24 patients with moderate-to-severe plaque psoriasis and employed a qualitative content analysis to derive thematic and evaluative codes. Findings were validated via peer debriefings with experienced dermatologists. Results: Patients reported burdensome physical and psychological psoriasis symptoms and identified factors that can improve or worsen symptomatology, including stress and self-efficacy. Prior treatment experiences were mostly negative. Past barriers to effective treatment included time constraints or limited access. Concerning secukinumab, patients initially expected complete to partial remission of symptoms and occurrence or absence of side effects. Closer inspection of expectations and experiences revealed three trajectories. For most patients, initial expectations were met and future expectations remained unchanged. For the other patients, however, the experience did not match their initial expectation. One group then adapted their future expectations according to their experience, while the other group did not. Conclusion: To our knowledge, this is the first qualitative study to assess expectations towards treatment effectiveness and side effects, their trajectories, and interplay with experiences among psoriasis patients. Our findings highlight the value of further research on the subject in order to optimize care for psoriasis patients and to learn more about the trajectories and influence of treatment expectations in general.


Patients' expectations towards a certain treatment can influence how well it will work and whether side effects occur or not. Such effects have been shown for a wide range of conditions, including dermatological ones. For patients suffering from psoriasis, a chronic inflammatory skin disease, modern biologics offer promising treatment options. Therefore, modern biologics are likely associated with high expectations by patients. Yet, the roles of treatment expectations and the experiences of patients undergoing biologic treatment have only received little attention to date. With this qualitative study, we aimed to understand patients' perspectives on these treatments, the symptoms they suffer from, expectations towards treatment effectiveness and side effects as well as treatment experiences in the past and over the course of treatment with a modern biologic. To this end, we conducted and transcribed interviews with 24 patients after several months of biologic treatment. We then analyzed interview transcripts to determine underlying categories and summarized these in a common framework. We found that patients' debilitating physical and psychological symptoms were often not well controlled in past treatments. Still, patients had positive expectations with regard to biologic treatment. For a large group of patients, their actual experiences met their expectations, leaving them with unchanged expectations for the future. Another important finding was the good understanding of factors influencing their symptomatology that patients had, like stress and self-efficacy. The reported findings may aid doctors in their clinical work, to further improve care for psoriasis patients.

5.
Public Health Action ; 14(2): 51-55, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38957505

ABSTRACT

The occurrence of transient culture positivity for Mycobacterium tuberculosis (MTB), known as mirage de tuberculose, poses significant challenges in understanding its spectrum and implications. Here, we report a case of transient culture positivity, oscillating between detectable and non-detectable MTB cultures with minimal radiological features and review the literature on this phenomenon. The scarcity of scientific literature on this subject stems from the inherent impossibility of systematically studying mirage de tuberculose. Ethical and public health concerns prevent withholding treatment to monitor spontaneous reversion to negative cultures. Based on the literature, we estimate that mirage de tuberculose occurs in approximately one-third of individuals infected with MTB who exhibit no symptoms. Despite the inherently limited nature of these findings, they suggest that the significance of mirage de tuberculose may be greater than currently perceived. Managing cases of mirage de tuberculose presents formidable challenges from a public health perspective. Striking a balance between prompt treatment initiation to prevent transmission and the risk of unnecessary treatment requires careful consideration. In conclusion, mirage de tuberculose remains a poorly understood clinical entity with very limited literature available. Advancing research and interdisciplinary collaborations are essential to unravel the intricacies of this phenomenon and develop effective strategies to address its public health challenges.


L'apparition d'une culture transitoire positive pour Mycobacterium tuberculosis (MTB), connue sous le nom de mirage de tuberculose, pose des défis importants dans la compréhension de son spectre et de ses implications. Nous rapportons ici un cas de positivité transitoire des cultures, oscillant entre des cultures MTB détectables et non détectables avec des caractéristiques radiologiques minimales et passons en revue la littérature sur ce phénomène. La rareté de la littérature scientifique sur ce sujet provient de l'impossibilité inhérente d'étudier systématiquement le mirage de tuberculose. Des préoccupations éthiques et de santé publique empêchent l'interruption du traitement pour surveiller le retour spontané à des cultures négatives. Sur la base de la littérature, nous estimons que le mirage de tuberculose survient chez environ un tiers des personnes infectées par le MTB qui ne présentent aucun symptôme. Malgré la nature intrinsèquement limitée de ces résultats, ils suggèrent que l'importance du mirage de tuberculose pourrait être plus grande que ce que l'on perçoit actuellement. La prise en charge des mirages de tuberculose présente des défis considérables du point de vue de la santé publique. Il faut trouver un équilibre entre l'instauration rapide du traitement pour prévenir la transmission et le risque d'un traitement inutile. En conclusion, le mirage de tuberculose reste une entité clinique mal comprise et la littérature disponible est très limitée. L'avancement de la recherche et les collaborations interdisciplinaires sont essentiels pour démêler les subtilités de ce phénomène et élaborer des stratégies efficaces pour relever ses défis en matière de santé publique.

6.
J Occup Health ; 2024 Jul 03.
Article in English | MEDLINE | ID: mdl-38960387

ABSTRACT

OBJECTIVES: Occupational future time perspective (OFTP) is important concept for the successful career in older workers. The purpose of this study was to examine the associations between individual and work-related factors and OFTP. METHODS: We conducted a cross-sectional study via an online questionnaire survey. Respondents were stratified sampled according to the distribution of workers across Japan. To assess OFTP, we used the Japanese version of the OFTP scale. We included the factors such as sex, age, education, marital status, subjective health status, personal income, length of employment, industry, size of company, employment status, working days per week, and night shift. Multiple regression analysis was employed to calculate the regression coefficients for each factor, with OFTP serving as the dependent variable. RESULTS: We totally included 1,484 respondents. Our findings indicated that higher OFTP was associated with higher education, better subjective health status, higher personal income, and smaller size of company. Compared to the manufacturing, certain industries such as agriculture and forestry, transportation and postal services, and healthcare showed lower OFTP. In contrast to permanent workers, contract and part-time workers demonstrated lower OFTP, whereas owners of non-family businesses exhibited higher OFTP. Furthermore, individuals working 1-4 days per week showed lower OFTP compared to those working 5 days per week. CONCLUSIONS: Older workers facing limitations in resources, such as educational background, personal income, precarious employment, and health status, tend to have lower OFTP. Such individuals should be given priority for support and assistance.

7.
Soa Chongsonyon Chongsin Uihak ; 35(3): 197-209, 2024 Jul 01.
Article in English | MEDLINE | ID: mdl-38966201

ABSTRACT

Objectives: In this functional magnetic resonance imaging study, we aimed to investigate the differences in brain activation between individuals with autism spectrum disorder (ASD) and typically developing (TD) individuals during perspective taking. We also examined the association between brain activation and empathic and interoceptive abilities. Methods: During scanning, participants from the ASD (n=17) and TD (n=22) groups were shown pain stimuli and asked to rate the level of the observed pain from both self- and other-perspectives. Empathic abilities, including perspective taking, were measured using an empathic questionnaire, and three dimensions of interoception were assessed: interoceptive accuracy, interoceptive sensibility, and interoceptive trait prediction errors. Results: During self-perspective taking, the ASD group exhibited greater activation in the left precuneus than the TD group. During other-perspective taking, relative hyperactivation extended to areas including the right precuneus, right superior frontal gyrus, left caudate nucleus, and left amygdala. Brain activation levels in the right superior frontal gyrus while taking other-perspective were negatively correlated with interoceptive accuracy, and those in the left caudate were negatively correlated with perspective taking ability in the ASD group. Conclusion: Individuals with ASD show atypical brain activation during perspective taking. Notably, their brain regions associated with stress reactions and escape responses are overactivated when taking other-perspective. This overactivity is related to poor interoceptive accuracy, suggesting that individuals with ASD may experience difficulties with the self-other distinction or atypical embodiment when considering another person's perspective.

8.
J Neurol Surg B Skull Base ; 85(4): 358-362, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38966304

ABSTRACT

Objective Current transnasal endoscopic techniques for sinus and skull base surgery use a single endoscope to provide visualization from one perspective curtailing depth perception and compromising visualization of the instrument-target interface. The view can be blocked by instruments, and collisions between instruments often occur. The objective of this study was to investigate the use of multiportal retrograde endoscopy to provide more accurate manipulation of the surgical target. Design Maxillary antrostomy and frontal sinusotomy were performed on three different cadavers by three different surgeons. A zero-degree rigid endoscope was introduced through the nose for the standard transnasal approach. A flexible endoscope was introduced transorally, directed past the palate superiorly, and then flexed 180 degrees for the retrograde view. Videos of the standard transnasal view from the rigid endoscope and retrograde view from the flexible endoscope were recorded simultaneously. Results All surgeries were able to be performed with dual-screen viewing of the standard and retrograde view. The surgeons noted that they utilized the retrograde view to adjust the location of ends/tips of their instruments. Four surgeons reviewed the videos and individually agreed that the visualization achieved provided a perspective otherwise not attainable with rigid transnasal endoscopy alone. Conclusion High-quality visualization of surgical targets such as the frontal or maxillary ostia can be challenging with rigid endoscopes alone. Multiportal retrograde endoscopy provides proof of concept that additional views of a surgical target can be achieved. Additional work is needed to further develop indications, techniques, and generalizability to targets beyond those investigated here.

9.
BMC Neurol ; 24(1): 232, 2024 Jul 04.
Article in English | MEDLINE | ID: mdl-38965567

ABSTRACT

BACKGROUND: High-frequency headache/migraine (HFM) and overuse of acute medication (medication overuse [MO]) are associated with increased disability and impact. Experiencing both HFM and MO can potentially compound impacts, including stigma; however, evidence of this is limited. The objective of this report was to evaluate self-reported stigma, health-related quality of life (HRQoL), disability, and migraine symptomology in US adults with HFM + MO from the Harris Poll Migraine Report Card survey. METHODS: US adults (≥ 18 yrs., no upper age limit) who screened positive for migraine per the ID Migraine™ screener completed an online survey. Participants were classified into "current HFM + MO" (≥ 8 days/month with headache/migraine and ≥ 10 days/month of acute medication use over last few months) or "previous HFM + MO" (previously experienced HFM + MO, headaches now occur ≤ 7 days/month with ≤ 9 days/month of acute medication use). Stigma, HRQoL, disability, and most bothersome symptom (MBS) were captured. The validated 8-item Stigma Scale for Chronic Illnesses (SSCI-8) assessed internal and external stigma (scores ≥ 60 are clinically significant). Raw data were weighted to the US adult population. Statistically significant differences were determined by a standard t-test of column proportions and means at the 90% (p < 0.1) and 95% (p < 0.05) confidence levels. RESULTS: Participants (N = 550) were categorized as having current (n = 440; mean age 41.1 years; 54% female; 57% White, not Hispanic; 24% Hispanic; 11% Black, not Hispanic) or previous (n = 110; mean age 47.2 years; 49% female; 75% White, not Hispanic; 13% Hispanic; 4% Black, not Hispanic) HFM + MO. Compared to those with previous HFM + MO (21%), adults with current HFM + MO were more likely to experience clinically significant levels of stigma (47%). Men with current HFM + MO (52% compared to men with previous HFM + MO [25%] and women with current [41%] or previous [18%] HFM + MO), non-Hispanic Black (51% compared to White, not Hispanic [45%] and Hispanic [48%] current HFM + MO groups and White, not Hispanic previous HFM + MO [12%]), current HFM + MO aged 18-49 years (50% compared to those with current HFM + MO aged ≥ 50 years [33%] and those with previous HFM + MO aged 18-49 [34%] and ≥ 50 years [4%]), and employed respondents (53% current and 29% previous compared to those not employed [32% current and 12% previous]) reported higher rates of clinically significant stigma. Those with current HFM + MO were more likely to have worse HRQoL and disability due to headache/migraine. Respondents aged ≥ 50 years with current HFM + MO were more likely than respondents aged 18-49 years with current HFM + MO to indicate that their overall quality of life (66% vs. 52%) and their ability to participate in hobbies/activities they enjoy were negatively impacted by headache/migraine (61% vs. 49%). Pain-related symptoms were identified as the MBS. CONCLUSIONS: Together these data suggest that current and previous HFM + MO can be associated with undesirable outcomes, including stigma and reduced HRQoL, which were greatest among people with current HFM + MO, but still considerable for people with previous HFM + MO.


Subject(s)
Migraine Disorders , Quality of Life , Social Stigma , Humans , Male , Female , Adult , Quality of Life/psychology , Migraine Disorders/epidemiology , Migraine Disorders/psychology , Migraine Disorders/drug therapy , Middle Aged , Young Adult , Adolescent , Surveys and Questionnaires , Headache/epidemiology , Headache/psychology , Headache/drug therapy
10.
Child Abuse Negl ; : 106934, 2024 Jul 05.
Article in English | MEDLINE | ID: mdl-38971702

ABSTRACT

BACKGROUND: Although children's right to participate in decisions that influence their lives is widely recognized, it is rarely present in the assessment and decision-making processes in child protective services (CPS). OBJECTIVE: The aim of this systematic review was to examine children's views and experiences of participating in CPS cases of child abuse and neglect and to identify the gap in scientific knowledge. METHODS: The systematic review follows the PRISMA statement and includes 13 peer-reviewed articles published in several academic journals from 2016 to 2023 reporting primary research with abused and neglected children registered in CPS. RESULTS: Thematic analysis identified five main themes: participation: assessment and decision-making, information and understanding, interaction and relationships, children vs parents, and experience of younger children. The findings show that although a few children reported instances of meaningful participation, overall, children's participation was often reduced to a tokenistic engagement, with limited influence on the decision-making processes. Children, especially younger children, receive insufficient information and struggle to understand the proceedings. Examples of prioritizing parents' views, needs, and rights rather than centering the children's perspectives are reported. CONCLUSIONS: The findings highlight a need for significant changes in how child participation is conceptualized and operationalized within CPS. Implications for practice, policy, and research are discussed to foster children's participation in CPS to contribute to the effective care and protection of children experiencing child abuse and neglect.

11.
JMIR Form Res ; 8: e54407, 2024 Jul 09.
Article in English | MEDLINE | ID: mdl-38980712

ABSTRACT

Social media analyses have become increasingly popular among health care researchers. Social media continues to grow its user base and, when analyzed, offers unique insight into health problems. The process of obtaining data for social media analyses varies greatly and involves ethical considerations. Data extraction is often facilitated by software tools, some of which are open source, while others are costly and therefore not accessible to all researchers. The use of software for data extraction is accompanied by additional challenges related to the uniqueness of social media data. Thus, this paper serves as a tutorial for a simple method of extracting social media data that is accessible to novice health care researchers and public health professionals who are interested in pursuing social media research. The discussed methods were used to extract data from Facebook for a study of maternal perspectives on sudden unexpected infant death.

12.
Disasters ; : e12650, 2024 Jul 11.
Article in English | MEDLINE | ID: mdl-38992875

ABSTRACT

Natural hazard-related disasters are on the rise and have significant impacts on the public and private sector. Different mechanisms and instruments exist on the pan-European level to deal with them, including the European Union Solidarity Fund (EUSF). Recently, the EUSF expanded its scope to incorporate public health emergencies and merged with the Emergency Aid Reserve to become the Solidarity and Emergency Aid Reserve. It therefore became a multi-hazard and multi-risk instrument to assist countries during the emergency phase of disasters. As different types of hazards and risks are drawing from the same fund there is concern about what capitalisation levels have to be assumed to make it sustainable. Hence, it is important to understand to which hazards and risks the fund is most exposed and whether there are regional differences within Europe. To address these issues, this paper takes a risk-based approach and estimates the capitalisation levels needed for major hazards and risks, noting regional differences across Europe.

13.
Open Mind (Camb) ; 8: 826-858, 2024.
Article in English | MEDLINE | ID: mdl-38974582

ABSTRACT

We explored how individuals' mental representations of complex and uncertain situations impact their ability to reason wisely. To this end, we introduce situated methods to capture abstract and concrete mental representations and the switching between them when reflecting on social challenges. Using these methods, we evaluated the alignment of abstractness and concreteness with four integral facets of wisdom: intellectual humility, open-mindedness, perspective-taking, and compromise-seeking. Data from North American and UK participants (N = 1,151) revealed that both abstract and concrete construals significantly contribute to wise reasoning, even when controlling for a host of relevant covariates and potential response bias. Natural language processing of unstructured texts among high (top 25%) and low (bottom 25%) wisdom participants corroborated these results: semantic networks of the high wisdom group reveal greater use of both abstract and concrete themes compared to the low wisdom group. Finally, employing a repeated strategy-choice method as an additional measure, our findings demonstrated that individuals who showed a greater balance and switching between these construal types exhibited higher wisdom. Our findings advance understanding of individual differences in mental representations and how construals shape reasoning across contexts in everyday life.

14.
Cureus ; 16(6): e61801, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38975463

ABSTRACT

BACKGROUND: Informed consent is a critical component of ethical clinical practice, particularly in elective orthopedic procedures. It ensures that patients understand the nature, benefits, and risks of the medical procedures they agree to undergo. This study aims to evaluate the informed consent process at Merlin Park University Hospital from the patient's perspective. METHODS: This cross-sectional observational study included 140 participants undergoing elective orthopedic procedures. Data were collected via a questionnaire focusing on socio-demographic information and the informed consent process, including details on who provided the information, where and when the consent was signed, and patient understanding and satisfaction. Responses were analyzed using SPSS version 26 (IBM Corp., Armonk, NY). RESULTS: The majority of participants were females, with 80 (57.1%) women and 60 (42.9%) men. The average age of the participants was 60.86 years. Most participants were employed, constituting 75 (53.6%) of the sample, and 55 (39.3%) had attained university or higher education. The most common procedures were total hip replacement, with 30 (21.4%) participants, and total knee replacement, with 20 (14.3%) participants. Information during the consent process was primarily provided by consultants in 80 (57.1%) cases. High satisfaction levels were reported, with 139 (99.3%) participants expressing satisfaction. Significant correlations were found between satisfaction and the type of healthcare provider, type of operation, and educational level. CONCLUSION: The informed consent process at Merlin Park University Hospital is generally effective, with high patient satisfaction and understanding. However, there is a preference for concise information delivery. Enhancing the process through personalized information delivery could further improve patient satisfaction and comprehension. These findings contribute valuable insights into patient-centered care and informed consent in elective orthopedic surgeries.

15.
Orphanet J Rare Dis ; 19(1): 263, 2024 Jul 11.
Article in English | MEDLINE | ID: mdl-38992753

ABSTRACT

BACKGROUND: Lipodystrophy syndromes are a heterogeneous group of rare, life-limiting diseases characterized by a selective loss of adipose tissue and severe metabolic complications. There is a paucity of information describing the experiences and challenges faced by physicians who have seen and treated patients with lipodystrophy. This study aimed to provide a better understanding of the physician's perspective regarding the patient journey in lipodystrophy, including diagnosis, the burden of disease, and treatment approaches. METHODS: Thirty-three physicians from six countries who had seen or treated patients with lipodystrophy were interviewed using a semi-structured questionnaire. Interviews were transcribed, anonymized, and analyzed for themes and trends. Four main themes were developed: (1) the diagnostic journey in lipodystrophy including the disease features or 'triggers' that result in the onward referral of patients to specialist medical centers with experience in managing lipodystrophy; (2) the impact of lipodystrophy on patient quality of life (QoL); (3) the use of standard therapies and leptin replacement therapy (metreleptin) in lipodystrophy, and (4) barriers to metreleptin use. RESULTS: Participants reported that, due to their rarity and phenotypic heterogeneity, lipodystrophy cases are frequently unrecognized, leading to delays in diagnosis and medical intervention. Early consultation with multidisciplinary specialist medical teams was recommended for suspected lipodystrophy cases. The development and progression of metabolic complications were identified as key triggers for the referral of patients to specialist centers for follow-up care. Participants emphasized the impact of lipodystrophy on patient QoL, including effects on mental health and self-image. Although participants routinely used standard medical therapies to treat specific metabolic complications associated with lipodystrophy, it was acknowledged that metreleptin was typically required in patients with congenital generalized lipodystrophy and in some acquired generalized and partial lipodystrophy cases. A lack of experience among some participants and restrictions to access remained as barriers to metreleptin use. CONCLUSIONS: To our knowledge, this is one of the first studies describing the qualitative experiences of physicians regarding the diagnosis and management of lipodystrophy. Other physician-centered studies may help increase the awareness of lipodystrophy among the wider medical community and support clinical approaches to this rare disease.


Subject(s)
Lipodystrophy , Humans , Lipodystrophy/diagnosis , Lipodystrophy/therapy , Female , Male , Quality of Life , Physicians , Surveys and Questionnaires , Leptin/therapeutic use , Leptin/metabolism , Leptin/analogs & derivatives
16.
Psychoneuroendocrinology ; 168: 107115, 2024 Jul 02.
Article in English | MEDLINE | ID: mdl-39002452

ABSTRACT

OBJECTIVE: The stress experienced by a woman during pregnancy not only has a negative impact on her well-being and physical health but also adversely affects the fetus. Stress is strongly linked with time perspective, defined as the tendency to focus on the past, present, or future. The study aimed to investigate how couples' balanced time perspective was related to maternal prenatal hair cortisol concentration and perceived stress in the first and third trimesters of pregnancy. METHOD: The participants were pregnant women and their male partners (84 couples). Women completed online questionnaires: the Zimbardo Time Perspective Inventory (ZTPI), the Dark Future Scale (DFS), and the Perceived Stress Scale, while men completed online versions of the ZTPI and the DFS. These questionnaire measurements were conducted in the first and third trimesters. Maternal cortisol levels were measured in hair samples taken during gynecological visits, in the first and third trimesters. RESULTS: The study revealed that the more unbalanced the partner's time perspective, the more unbalanced the pregnant woman's time perspective and, consequently, the higher the stress perceived by the pregnant woman. This effect was present in both the first (B = 1.06, SE =.36, p <.001, 95 % CI [.398, 1.826]) and the third trimesters (B =.98, SE =.36, p <.001, 95 % CI [.327, 1.774]). Moreover, the more unbalanced the partner's time perspective, the more unbalanced the woman's time perspective and, consequently, the lower the hair cortisol concentration in the first trimester (B = -.08, SE =.04, p <.05, 95 % CI [-.171, -.010]). Partner's unbalanced time perspective in the first trimester was also a predictor of stress perceived by the woman in the third trimester (t = 2.38, p <.05). CONCLUSIONS: The results suggest the significance of the partner's time perspective for the pregnant woman's mental health. The partner's unbalanced, negative time perspective in the first trimester may increase the pregnant woman's stress in the third trimester. This effect can be even stronger than that of the woman's time perspective.

17.
J Adolesc ; 2024 Jul 10.
Article in English | MEDLINE | ID: mdl-38988061

ABSTRACT

INTRODUCTION: Adolescents' academic achievement is closely associated with their future time perspective. However, the reciprocal nature of this relationship remains ambiguous due to a lack of longitudinal studies. This study investigated the developmental trajectories of future time perspective and academic achievement among adolescents, as well as reciprocal relations between future time perspective and academic achievement. METHODS: Between 2017 and 2019, we collected 373 adolescents' (baseline Mage = 14.48, SD = 1.90; 49% girls) future time perspective and academic achievement four times from Henan and Hunan Province, China. Each is separated by a 6-month interval. RESULTS: Chinese adolescents' future time perspective was relatively stable. Regarding academic achievement, two distinct developmental trajectories of academic achievement were identified (i.e., high positive growth class and low negative growth class). Those who excel tended to experience an upward trajectory, while those with poorer grades continued to experience a downward trajectory. In the high positive growth class, the intercept of future time perspective was positively correlated with the rate of academic achievement growth, whereas, in the low negative growth class, it negatively predicted the rate of academic achievement decline. More importantly, reciprocal relations existed between future time perspective and academic achievement. CONCLUSIONS: Adolescents' future time perspective may serve as a protective factor for academic achievement, while high academic achievement may also benefit future time perspective. Interventions to enhance academic achievement should prioritize cultivating adolescents' future perspectives. Additionally, preventing the adverse consequences of subpar academic achievement on future time perspective is imperative.

18.
Disabil Rehabil ; : 1-9, 2024 Jul 11.
Article in English | MEDLINE | ID: mdl-38988290

ABSTRACT

PURPOSE: To gain a rich understanding of the experiences and opinions of patients, healthcare professionals, and policymakers regarding the design of OGR with structure, process, environment, and outcome components. METHODS: Qualitative research based on the constructive grounded theory approach is performed. Semi-structured interviews were conducted with patients who received OGR (n = 13), two focus groups with healthcare professionals (n = 13), and one focus group with policymakers (n = 4). The Post-acute Care Rehabilitation quality framework was used as a theoretical background in all research steps. RESULTS: The data analysis of all perspectives resulted in seven themes: the outcome of OGR focuses on the patient's independence and regaining control over their functioning at home. Essential process elements are a patient-oriented network, a well-coordinated dedicated team at home, and blended eHealth applications. Additionally, closer cooperation in integrated care and refinement regarding financial, time-management, and technological challenges is needed with implementation into a permanent structure. All steps should be influenced by the stimulating aspect of the physical and social rehabilitation environment. CONCLUSION: The three perspectives generally complement each other to regain patients' quality of life and autonomy. This study demonstrates an overview of the building blocks that can be used in developing and designing an OGR trajectory.


There's a growing preference for providing geriatric rehabilitation in an outpatient setting at the patients' home (called outpatient geriatric rehabilitation), but little is known about the content, efficiency, and quality assurance of outpatient geriatric rehabilitation.The key elements for the outpatient geriatric rehabilitation framework consist of a specialized geriatric rehabilitation dedicated multidisciplinary team, patient-centered blended eHealth applications, collaboration with integrated care, especially in community care nursing, and physical and social rehabilitation environments.The outpatient geriatric rehabilitation design framework, which emerged from the thematic analysis, offers valuable insights, and can support healthcare professionals and policymakers to establish an effective rehabilitation pathway.

19.
Aging Ment Health ; : 1-9, 2024 Jul 11.
Article in English | MEDLINE | ID: mdl-38990123

ABSTRACT

OBJECTIVES: To examine in-depth experiences of loneliness and freedom after late-life divorce from an intergenerational familial/dyadic perspective in a family-oriented society that also values self-determination. Considering the expansion of late-life divorce, it is important to understand its consequences for the family wellbeing. METHOD: According to phenomenology tradition, data was collected through 51 semi-structured qualitative interviews, comprised from 7 family units (n = 33) including all/most family members and 9 parent-child dyads (n = 18), using thematic-analysis and dyadic interview-analysis principles. Analyzing family units enables a more complex examination of the phenomena, providing a holistic view of family life. RESULTS: Loneliness and freedom experienced simultaneously was the most common. A gap was identified between generations regarding benefits and costs of late-life divorce. Whereas most divorcees emphasized the benefits of freedom, most of their adult-children mainly described the disadvantages of loneliness, perceiving both loneliness and freedom as negative. CONCLUSION: Late-life divorce is a complex experience comprised of both loneliness and freedom. Each generation experiences the benefits and costs of late-life divorce differently. Unique aspects of freedom and loneliness at old age in a socio-cultural context located between self-determination and family-oriented are discussed, including strategies of coping with loneliness. Implications for families and professionals are presented.

20.
Schizophr Bull ; 2024 Jul 14.
Article in English | MEDLINE | ID: mdl-39004928

ABSTRACT

BACKGROUND AND HYPOTHESIS: Recovering from a first psychosis is a highly individual process and requires the person to make sense of their experiences. Clinicians, in turn, need to comprehend these first-person perspectives, creating a mutual sense-making dynamic. Antipsychotic medication is a substantial part of psychosis treatment. Providing insight in the lived experience of recovery with antipsychotics could improve the mutual understanding and help bridge the gap between the perspective of the clinician and that of the person recovering from psychosis. STUDY DESIGN: 14 persons in recovery from a first psychosis with the use of antipsychotics were interviewed. Their narratives were analyzed using Interpretative Phenomenological Analysis (IPA). STUDY RESULTS: Five overarching themes were found, representing important and meaningful experiences in recovering with antipsychotic medication. Theme 1: antipsychotics as external dampening (4 subthemes); Theme 2: shifting of realities; Theme 3: pace of recovery; Theme 4: antipsychotics' influence on identity; and Theme 5: is it truly the antipsychotics? CONCLUSIONS: Our findings show that recovery from psychosis with antipsychotics is an all-encompassing, multi-faceted, and ambivalent experience. The themes found in this research could inspire clinicians to discuss less obvious aspects of the experience of recovering with antipsychotics. Even more so, paying attention to the first-person perspective could lead to a more thorough understanding and benefit therapeutic relationships.

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