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1.
Article in English | MEDLINE | ID: mdl-38985567

ABSTRACT

Although enacted and internalized stigma is a continuing problem for people living with HIV (PLWH) in Southeast Asia, there is little understanding of how PLWH cope with discrimination, exclusion, and other negative outcomes caused by HIV-related stigmatization. This article aims to bridge this gap by analyzing the lived experiences of HIV-related stigmatization and coping strategies among 30 people with HIV in Myanmar, a country heavily influenced by religion, especially Buddhism. Among the 30 study participants, 20 were female and 10 were male, with ages ranging from 18 to 50 years. Through the lens of Bourdieu's concepts of habitus, field, and capital, this article first elucidates the various forms of stigmatization in family, work, social, and other settings as symbolic violence on people with HIV. The present article shows that spirituality serves as a perceptual and action framework for people with HIV to generate reflexivity toward their HIV infection and related stigmatization and to further engage in agentic responses. More importantly, this article demonstrates how people with HIV draw on spirituality to support peers in reclaiming control over their lives and how they are perceived by society. The findings indicate that the local context, especially cultural and religious resources, should be considered when developing interventions to mitigate HIV-related stigmatization in Southeast Asia.

2.
BMC Cancer ; 24(1): 613, 2024 May 21.
Article in English | MEDLINE | ID: mdl-38773461

ABSTRACT

BACKGROUND: The intricate balance between the advantages and risks of low-dose computed tomography (LDCT) impedes the utilization of lung cancer screening (LCS). Guiding shared decision-making (SDM) for well-informed choices regarding LCS is pivotal. There has been a notable increase in research related to SDM. However, these studies possess limitations. For example, they may ignore the identification of decision support and needs from the perspective of health care providers and high-risk groups. Additionally, these studies have not adequately addressed the complete SDM process, including pre-decisional needs, the decision-making process, and post-decision experiences. Furthermore, the East-West divide of SDM has been largely ignored. This study aimed to explore the decisional needs and support for shared decision-making for LCS among health care providers and high-risk groups in China. METHODS: Informed by the Ottawa Decision-Support Framework, we conducted qualitative, face-to-face in-depth interviews to explore shared decision-making among 30 lung cancer high-risk individuals and 9 health care providers. Content analysis was used for data analysis. RESULTS: We identified 4 decisional needs that impair shared decision-making: (1) LCS knowledge deficit; (2) inadequate supportive resources; (3) shared decision-making conceptual bias; and (4) delicate doctor-patient bonds. We identified 3 decision supports: (1) providing information throughout the LCS process; (2) providing shared decision-making decision coaching; and (3) providing decision tools. CONCLUSIONS: This study offers valuable insights into the decisional needs and support required to undergo LCS among high-risk individuals and perspectives from health care providers. Future studies should aim to design interventions that enhance the quality of shared decision-making by offering LCS information, decision tools for LCS, and decision coaching for shared decision-making (e.g., through community nurses). Simultaneously, it is crucial to assess individuals' needs for effective deliberation to prevent conflicts and regrets after arriving at a decision.


Subject(s)
Decision Making, Shared , Early Detection of Cancer , Health Personnel , Lung Neoplasms , Qualitative Research , Humans , Lung Neoplasms/diagnosis , Lung Neoplasms/diagnostic imaging , Male , Female , China , Middle Aged , Early Detection of Cancer/psychology , Early Detection of Cancer/methods , Health Personnel/psychology , Aged , Tomography, X-Ray Computed/methods , Adult , Patient Participation
3.
Asia Pac J Oncol Nurs ; 11(4): 100402, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38495639

ABSTRACT

Objective: To investigate current screening behaviors among high-risk individuals and analyse the factors that influence them. Methods: A cross-sectional of 1652 high-risk individuals were recruited in Fujian Province, China from February to October 2022. Socio-demographic characteristics of participants were collected and other survey measures included a lung cancer and lung cancer screening knowledge questionnaire and a stage of adoption algorithm. Standardized measures on surveys were comprised of the: Lung Cancer Screening Health Belief Scales, Cataldo Lung Cancer Stigma Scale, Generalized Anxiety Disorder Scale-7, Patient Health Questionnaire-9, and the Patient Trust in the Medical Profession Scale. Factors associated with screening behavior were identified using binary logistic regression analysis. Results: Lung cancer screening behavior stages were largely reported as Stage 1 and Stage 2 (64.4%). The facilitators of lung cancer screening included urban residence (OR = 1.717, 95% CI: 1.224-2.408), holding administrative positions (OR = 16.601, 95% CI: 2.118-130.126), previous lung cancer screening behavior (OR = 10.331, 95% CI: 7.463-14.302), media exposure focused on lung cancer screening (OR = 1.868, 95% CI: 1.344-2.596), a high level of knowledge about lung cancer and lung cancer screening (OR = 1.256, 95% CI: 1.185-1.332), perceived risk of lung cancer (OR = 1.123, 95% CI: 1.029-1.225) and lung cancer screening health beliefs (OR = 1.090, 95% CI: 1.067-1.113). A barrier to lung cancer screening was found to be social influence (influence of friends or family) (OR = 0.669, 95% CI: 0.465-0.964). Conclusions: This study found a low participation rate in lung cancer screening and identified eight factors that affected lung cancer screening behaviors among high-risk individuals. Findings suggest targeted lung cancer screening programs should be developed based on identified influencing factors in order to effectively promote awareness and uptake of lung cancer screening.

4.
Cancer Nurs ; 2024 Mar 18.
Article in English | MEDLINE | ID: mdl-38498799

ABSTRACT

BACKGROUND: Promoting lung cancer screening (LCS) is complex. Previous studies have overlooked that LCS behaviors are stage based and thus did not identify the characteristics of LCS interventions at different screening stages. OBJECTIVE: The aims of this study were to explore the characteristics and efficacy of interventions in promoting LCS decision making and behaviors and to evaluate these interventions. METHODS: We conducted a study search from the inception of each bibliographic database to April 8, 2023. The precaution adoption process model was used to synthesize and classify the evidence. The RE-AIM framework was used to evaluate the effectiveness of LCS programs. Heterogeneity tests and meta-analysis were performed using RevMan 5.4 software. RESULTS: We included 31 studies that covered 4 LCS topics: knowledge of lung cancer, knowledge of LCS, value clarification exercises, and LCS supportive resources. Patient decision aids outperformed educational materials in improving knowledge and decision outcomes with a significant reduction in decision conflict (standardized mean difference, 0.81; 95% confidence interval, -1.15 to -0.47; P < .001). Completion rates of LCS ranged from 3.6% to 98.8%. Interventions that included screening resources outperformed interventions that used patient decision aids alone in improving LCS completion. The proportions of reported RE-AIM indicators were highest for reach (69.59%), followed by adoption (43.87%), effectiveness (36.13%), implementation (33.33%), and maintenance (9.68%). CONCLUSION: Evidence from 31 studies identified intervention characteristics and effectiveness of LCS interventions based on different stages of decision making. IMPLICATIONS FOR PRACTICE: It is crucial to develop targeted and systematic interventions based on the characteristics of each stage of LCS to maximize intervention effectiveness and reduce the burden of lung cancer.

5.
Support Care Cancer ; 32(4): 211, 2024 Mar 05.
Article in English | MEDLINE | ID: mdl-38443746

ABSTRACT

PURPOSE: Family resilience helps cancer-affected families overcome challenges and may influence an individual's fear of cancer recurrence (FCR). Identifying distinct classes of family resilience among lung cancer patients is crucial for tailored interventions. This study aimed to identify latent classes of family resilience in lung cancer patients and explore their relationships with FCR. METHODS: Three hundred ten lung cancer patients from three hospitals in Fujian were recruited from June to September 2021. Clinical data were extracted from medical records, while sociodemographic details, family resilience, and FCR were self-reported. A latent class analysis was performed to identify family resilience classes. RESULTS: A 4-class solution showed the best fit. Compared to Class 1, the patients who had no comorbidities (ORs = 3.480-16.005) had an increased likelihood of belonging to Class 2 and 3, while those who were not family breadwinners (ORs = 0.118-0.176) had a decreased likelihood. Further, the patients who (1) did not lack interest/pleasure in doing things during the past 2-week period (OR = 7.057), (2) were never smokers (OR = 6.230), and (3) were urban residents (OR = 8.985) had an increased likelihood of belonging to Class 4, while those who were (1) male (OR = 0.167), (2) not the family breadwinner (OR = 0.152), and (3) had none or only one child (OR = 0.203) had a decreased likelihood of belonging to Class 4. The FCR level differed significantly among these four classes. CONCLUSION: Our study identified four distinct classes of family resilience among Chinese lung cancer patients. FCR severity decreased with increasing levels of family resilience.


Subject(s)
Lung Neoplasms , Resilience, Psychological , Child , Humans , Male , Cross-Sectional Studies , Latent Class Analysis , Family Health , Fear
6.
Front Pain Res (Lausanne) ; 3: 1031347, 2022.
Article in English | MEDLINE | ID: mdl-36341151

ABSTRACT

In order to explore the cultural constructs of pain, a series of focus groups were held among adult American Indian (AI) cancer survivors and their caregivers in the Southwest USA. Thirteen focus groups held at four sites (reservation, urban setting, hospital and clinic) elicited information on the barriers to cancer pain management. In response to facilitator questions about cancer pain and existing measurement scales, participants drew pictures to better explain their pain type (i.e., "pounding"), intensity (i.e., "spider web-like"), and other more abstract aspects of their pain episodes. Noting this novel outlet, subsequent groups were prompted for illustrations of pain. A total of 17 drawings were collected from focus group participants. We discuss seven of the drawings that best opened a window into the lived experience of pain, reflected through the eyes of cancer survivors. This study provides evidence that self-expression through color, imagery and written personal accounts provides more accurate depictions of pain for Southwest AI cancer survivors than pain scales alone. It is hypothesized that cultural modes of communication (i.e., storytelling) and intergenerational influences of artwork led to the depiction of pain in drawings. Suggestions for further exploration of the use of the pain drawings for pain assessment in healthcare settings are included.

7.
Cancers (Basel) ; 14(19)2022 Sep 29.
Article in English | MEDLINE | ID: mdl-36230694

ABSTRACT

There is limited literature related to culturally embedded meanings of cancer and related symptoms among American Indians. A culturally appropriate intervention to improve management of cancer-related symptoms, including pain, depression, fatigue and loss of function, was tested. Two-hundred and twenty-two adult American Indians with cancer were recruited from eight Southwest sites for a randomized clinical trial. The intervention group received tailored education, a toolkit with a video, and participated in discussion sessions on cancer symptom management; the control group received information on dental care. Pre- and post-test questionnaires were administered to control and intervention groups. Measures included socio-demographics, cancer-related symptom management knowledge and behavior, and quality of life measures. Male cancer survivors reported poorer self-assessed health status and lower scores on quality-of-life indicators as compared to female cancer survivors. Significant improvement was reported in symptom management knowledge scores following the intervention: management of pain (p = 0.003), depression (p = 0.004), fatigue (p = 0.0001), and loss of function (p = 0.0001). This study is one of the first to demonstrate a change in physical symptom self-management skills, suggesting culturally appropriate education and interventions can successfully enhance cancer-related symptom management knowledge and practice.

8.
Womens Health Rep (New Rochelle) ; 3(1): 593-600, 2022.
Article in English | MEDLINE | ID: mdl-35814610

ABSTRACT

Background: This article reports on the use of hospital Emergency Departments (EDs) in women experiencing homelessness in Los Angeles, California. Women 18 years of age or older were recruited from homeless day centers in Los Angeles to participate in this study. Materials and Methods: A self-report questionnaire on health status, demographics, and emergency service use was completed by study participants. Results: In this study of women experiencing homelessness, 64% utilized the ED within the past year. The mean number of ED use was 3.63 (range 0-20) visits in the past year. Higher frequency visits were significantly associated with several mental health conditions (p = 0.016), physical disability (p = 0.001), and traumatic brain injury (p = 0.013). Conclusions: The physical and psychological impacts of the homelessness experience can be enormous, affecting the homeless individually and collectively. Study findings may help to understand how to improve services that support and meet the needs of women experiencing homelessness such as patient and family-centered care and trauma-informed care in the ED.

9.
Amyotroph Lateral Scler ; 10(5-6): 374-7, 2009.
Article in English | MEDLINE | ID: mdl-19922127

ABSTRACT

The objective was to report on the creation, features and performance of a web-based data management system for a two-stage phase II randomized clinical trial of Co-Enzyme Q10 in ALS. We created a relatively comprehensive web-based data system that provided electronic data entry; patient management utilities; adverse event reporting, safety monitoring, and invoice generation; and standardized coding for medications and adverse events. In stage 1, clinical sites submitted 7207 forms reporting on 105 patients followed for 10 months. Less than 0.7% of submitted forms contained errors. At the time of the delivery of the analysis data set, only four errors remained unresolved. Data were available quickly, with a median time from event to data posting of two days. The data set was locked and the analysis data set produced nine days after the final patient visit. A survey of trial personnel yielded generally positive feedback, with 75% of respondents wishing to use a similar system in the future. Given sufficient resources, a comprehensive web-based data management system can meet the need for clean, available data in clinical trials in ALS and similar diseases, and can contribute significantly to their efficient execution.


Subject(s)
Amyotrophic Lateral Sclerosis/drug therapy , Clinical Trials, Phase II as Topic , Database Management Systems , Internet , Randomized Controlled Trials as Topic , Ubiquinone/analogs & derivatives , Vitamins/therapeutic use , Humans , Placebos/therapeutic use , Ubiquinone/therapeutic use
10.
Ann Neurol ; 66(2): 235-44, 2009 Aug.
Article in English | MEDLINE | ID: mdl-19743457

ABSTRACT

OBJECTIVE: Amyotrophic lateral sclerosis (ALS) is a devastating, and currently incurable, neuromuscular disease in which oxidative stress and mitochondrial impairment are contributing to neuronal loss. Coenzyme Q10 (CoQ10), an antioxidant and mitochondrial cofactor, has shown promise in ALS transgenic mice, and in clinical trials for neurodegenerative diseases other than ALS. Our aims were to choose between two high doses of CoQ10 for ALS, and to determine if it merits testing in a Phase III clinical trial. METHODS: We designed and implemented a multicenter trial with an adaptive, two-stage, bias-adjusted, randomized, placebo-controlled, double-blind, Phase II design (n = 185). The primary outcome in both stages was a decline in the ALS Functional Rating Scale-revised (ALSFRSr) score over 9 months. Stage 1 (dose selection, 35 participants per group) compared CoQ10 doses of 1,800 and 2,700 mg/day. Stage 2 (futility test, 75 patients per group) compared the dose selected in Stage 1 against placebo. RESULTS: Stage 1 selected the 2,700 mg dose. In Stage 2, the pre-specified primary null hypothesis that this dose is superior to placebo was not rejected. It was rejected, however, in an accompanying prespecified sensitivity test, and further supplementary analyses. Prespecified secondary analyses showed no significant differences between CoQ10 at 2,700 mg/day and placebo. There were no safety concerns. INTERPRETATION: CoQ10 at 2,700 mg daily for 9 months shows insufficient promise to warrant Phase III testing. Given this outcome, the adaptive Phase II design incorporating a dose selection and a futility test avoided the need for a much larger conventional Phase III trial.


Subject(s)
Amyotrophic Lateral Sclerosis/drug therapy , Antioxidants/therapeutic use , Ubiquinone/analogs & derivatives , Amyotrophic Lateral Sclerosis/mortality , Antioxidants/administration & dosage , Antioxidants/adverse effects , Clinical Trials, Phase III as Topic , Double-Blind Method , Female , Follow-Up Studies , Humans , Male , Medication Adherence , Middle Aged , Severity of Illness Index , Time Factors , Treatment Outcome , Ubiquinone/administration & dosage , Ubiquinone/adverse effects , Ubiquinone/therapeutic use
11.
Amyotroph Lateral Scler ; 8(1): 42-6, 2007 Feb.
Article in English | MEDLINE | ID: mdl-17364435

ABSTRACT

We wished to determine whether the Amyotrophic Lateral Sclerosis Functional Rating Scale-revised (ALSFRS-R) is reliable when used as primary outcome measure in a multicenter clinical trial. To establish inter-rater reliability, we randomly assigned 19 primary raters and 11 back-up raters to score nine amyotrophic lateral sclerosis (ALS) patients using the ALSFRS-R. To assess intra-rater reliability and reliability of telephone administration, we randomly assigned consecutive participants of the Clinical Trial of High Dose Coenzyme Q10 in ALS (QALS) to have in-person ALSFRS-R interviews at both screening and baseline visits (n=41 patients) or to have the ALSFRS-R interview by telephone at screening and in person at the baseline visit (n=27). An intraclass correlation coefficient (ICC) of reliability was calculated using a one-way random effects analysis of variance model. In the inter-rater reliability assessment, the primary raters performed 54 ratings on nine patients with ICC=0.93 (95% CI 0.84-0.98). For back-up raters, 32 ratings on nine patients resulted in ICC=0.93 (95% CI 0.82-0.98). The intra-rater reliability for in-person interviews was ICC = 0.95 (95% CI 0.92-0.98). The reliability of telephone administration compared to in-person interviews was ICC=0.97 (95% CI 0.93-0.98). We conclude that the ALSFRS-R shows excellent inter- and intra-rater reliability, and reliability of telephone administration when used as primary outcome measure in a multicenter ALS trial.


Subject(s)
Amyotrophic Lateral Sclerosis/physiopathology , Caregivers/psychology , Severity of Illness Index , Sickness Impact Profile , Activities of Daily Living , Amyotrophic Lateral Sclerosis/drug therapy , Coenzymes , Double-Blind Method , Humans , Reproducibility of Results , Retrospective Studies , Telephone/instrumentation , Ubiquinone/analogs & derivatives , Ubiquinone/therapeutic use , Vitamins/therapeutic use
12.
Biochem Pharmacol ; 66(8): 1571-9, 2003 Oct 15.
Article in English | MEDLINE | ID: mdl-14555236

ABSTRACT

Male mice homozygous for a mutated allele of the cyclin A1 gene (Ccna1) are sterile due to a block in cell cycle progression before the first meiotic division. Meiosis arrest in Ccna1(-/-) spermatocytes is associated with desynapsis abnormalities, lowered MPF activity, and apoptosis as evidenced by TUNEL-positive staining. With time, adult testicular tubules exhibit severe degeneration: some tubules in the older animals are almost devoid of germ cells at various stages of spermatogenesis. The mechanisms by which the cells sense the cell cycle arrest and the regulation of the decision to undergo cell death are under investigation.


Subject(s)
Apoptosis/physiology , Cyclin A/deficiency , Germ Cells/pathology , Animals , Cell Cycle/physiology , Cyclin A/genetics , Cyclin A/metabolism , Cyclin A1 , Male , Mesothelin , Mice , Mutagenesis , Spermatogenesis/physiology
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