COVID-19 clinical trial participation and awareness in Texas.

The COVID-19 pandemic required the rapid development of COVID-19 vaccines and treatments, necessitating quick yet representative clinical trial enrollment to evaluate these preventive measures. However, misinformation around the COVID-19 pandemic and general concerns about clinical trial participation in the U.S. hindered clinical trial enrollment. This study assessed awareness of, willingness to participate in, and enrollment in COVID-19 vaccine and treatment clinical trials in Texas. A quota sample of 1,089 Texas residents was collected online from June - July 2022. Respondents were asked if they were aware of, willing to participate in, and had enrolled in clinical trials for COVID-19 vaccines or treatments. Overall, 45.8% of respondents reported being aware of clinical trials for COVID-19 treatments or vaccines, but only 21.7% knew how to enroll and only 13.2% had enrolled in a COVID-19 clinical trial. Respondents with bachelor's or graduate degrees were more likely to be aware of clinical trials, more likely to have enrolled in trials, and more willing to participate in treatment trials. Women were less willing to participate and less likely to have enrolled in COVID-19 clinical trials than men. Respondents aged 55 years and older were more willing to participate, but less likely to have enrolled in COVID-19 clinical trials than 18-to-24-year-olds. Common reasons given for not participating in clinical trials included concerns that COVID-19 treatments may not be safe, government distrust, and uncertainty about what clinical trial participation would entail. Substantial progress is needed to build community awareness and increase enrollment in clinical trials.

Decision-making and autonomy among participants in early-phase cancer immunotherapy trials: a qualitative study.

BACKGROUND: Participants considering early-phase cancer clinical trials (CTs) need to understand the unique risks and benefits prior to providing informed consent. This qualitative study explored the factors that influence patients' decisions about participating in early-phase cancer immunotherapy CTs through the ethical lens of relational autonomy. METHODS: Using an interpretive descriptive design, interviews were conducted with 21 adult patients with advanced cancer who had enrolled in an early-phase CT. Data was analyzed using relational autonomy ethical theory and constant comparative analysis. RESULTS: The extent to which participants perceived themselves as having a choice to participate in early-phase cancer immunotherapy CTs was a central construct. Perceptions of choice varied according to whether participants characterized their experience as an act of desperation or as an opportunity to receive a novel treatment. Intersecting psychosocial and structural factors influenced participants' decision making about participating in early-phase cancer immunotherapy trials. These relational factors included: (1) being provided with hope; (2) having trust; (3) having the ability to withdraw; and (4) timing constraints. CONCLUSIONS: Findings highlight the continuum of perceived choice that exists among patients with cancer when considering participation in early-phase cancer immunotherapy CTs. All participants were interpreted as exhibiting some degree of relational autonomy within the psychosocial and structural context of early-phase CT decision making. This study offers insights into the intersection of cancer care delivery, personal beliefs and values, and established CT processes and structures that can inform future practices and policies associated with early-phase cancer immunotherapy CTs to better support patients in making informed decisions.

Measuring patient activation: the utility of the Patient Activation Measure administered in an interview setting.

BACKGROUND: Patient activation is an emerging field in healthcare research concerning knowledge, skills, and confidence of patients in managing their health. This is particularly important for patients with chronic diseases, who often require more complex care management and self-care skills. However, due to temporary or longer-lasting visual impairments, certain patient groups cannot answer a questionnaire independently. The main objective is to investigate the psychometric properties of the German Patient Activation Measure® (PAM) survey in an everyday clinical setting where it has to be read aloud. METHODS: Outpatients with macular edema participated in this questionnaire-based cross-sectional study. The study assessed patient activation by the PAM® survey, self-rated health, self-efficacy, quality of life, and general mood. Interviewers read questionnaires aloud to patients. Psychometric properties of the PAM® survey were investigated by item response theory (IRT), Cronbach's α and trait-trait correlations. RESULTS: The analysis included N = 554 patients. Median age was 69 (IQR 62.0-76.0) years and mean overall activation score 74.1 (SD 13.7). All items showed ceiling effects. Empirical reliability from the IRT model and Cronbach's α were 0.75. The PAM® survey showed a Spearman correlation of 0.54 with self-efficacy, 0.51 with quality of life and 0.34 with general mood. CONCLUSION: The read-aloud PAM® survey has been shown to provide to adequate measurement precision and convergent validity to be used as a screening tool in an everyday clinical setting. Objective assessment in an interview setting with the PAM® survey is possible. PAM® items are good in distinguishing lower to middle activated patients, but not patients with high activation. Further, issues with structural validity need more investigation.

Patient activation and psychological coping strategies to manage challenging circumstances during the COVID-19 pandemic in people with kidney disease.

BACKGROUND: Coping with health problems requires some degree of self-management; however, an individual's ability to self-manage can be threatened during challenging times, such as the COVID-19 pandemic. Exploring differences and changes in psychological well-being and coping strategies between those with low and high patient activation may inform appropriate interventions to support psychological coping. METHODS: People with chronic kidney disease (CKD) (non-dialysis and transplant) were recruited from 11 hospital sites across England between August and December 2020. Participants responded to an online survey study, including the Brief Coping Orientation to Problem Experienced (COPE) Inventory, Depression, Anxiety and Stress Scale (DASS-21), Short Health Anxiety Index (SHAI), and Patient Activation Measure (PAM-13). A follow-up survey was conducted 6-9 months later. Paired t tests assessed within-group changes, and chi-squared tests compared coping strategies utilised by low- and high-activated participants. General linear modelling was performed to determine the relationship between patient activation and coping strategies, and covariates. RESULTS: Two hundred and fourteen participants were recruited (mean age: 60.7, 51% male, mean eGFR: 38.9 ml/min/1.73 m2). Low-activated participants were significantly more anxious than high-activated participants (P = 0.045). Health anxiety significantly decreased (i.e., got better) for high-activated participants (P = 0.016). Higher patient activation scores were associated with greater use of problem-focused strategies (ß = 0.288, P < 0.001). Age (ß = - 0.174, P = 0.012), sex (ß = 0.188, P = 0.004), and education level (ß = 0.159, P = 0.019) significantly predicted use of problem-focused strategies. DISCUSSION: Those with higher activation had lower levels of anxiety, and more frequently used adaptive coping strategies during the pandemic. Targeted support and interventions may be required for people with CKD to enhance patient activation, encourage more positive adaptive coping strategies, and mitigate maladaptive coping strategies.

Patients' experiences of shared decision-making in nursing care: A qualitative study.

AIM: To explore patients' experiences of shared decision-making, in nursing care during their stay in a healthcare institution. DESIGN: This study employed a qualitative descriptive design. METHODS: Twenty participants were interviewed from two rehabilitation centres, a nephrology ward of a hospital, and a rehabilitation ward of a long-term care facility. A constant comparative method was used for the inductive analysis. RESULTS: The main theme was 'feeling seen and understood', in the context of person-centred care, which served as the unifying thread across five themes. The five themes included the importance of a positive nurse-patient relationship as a foundation for shared decision-making. Next, patients experienced collaboration, and this was influenced by verbal and non-verbal communication. Another theme was that patients often felt overwhelmed during their stay, affecting shared decision-making. The fourth theme was that many decisions were not made through the shared decision-making process but were still perceived as satisfactory. The final theme highlighted patients' perspectives on their role in decision-making and influencing factors. CONCLUSION: Patients describe how feeling seen and understood is a prerequisite for shared decision-making as a part of person-centred care. For nurses, this implies that they should focus on aspects such as building a good relationship and acknowledgement of patients' feelings and circumstances, next to empowering patients to feel knowledgeable and valued. This way patient's motivation to participate in shared decision-making will be enhanced. REPORTING METHOD: Following the EQUATOR guidelines, reporting was guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Patients were involved in the study through interviews during the research process and member checks during analysis. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Before initiating shared decision-making processes, prioritise making the patient feel seen and understood. Be mindful that patients often feel overwhelmed during their stay. Use a person-centred approach to make patients feel knowledgeable-this empowers them for shared decision-making. IMPACT: Research on patients' experiences of shared decision-making in nursing care is limited, yet crucial for understanding patients' needs in shared decision-making. This study highlights patients' perceptions that shared decision-making is best facilitated within the nurse-patient relationship by nurses who primarily focus on ensuring that patients feel acknowledged and understood.

Knowledge and Attitudes of Clinical Trials among Patients with Rare Diseases and the Guardians in China.

BACKGROUND: Conducting of clinical trials for rare diseases faces multiple challenges. Patients' cognition and attitude toward clinical trials are crucial, which may affect their participation and compliance, and affect the schedule of clinical trials eventually. OBJECTIVE AND METHOD: This study aims to explore the knowledge and attitudes of clinical trials of patients with rare diseases or patients' guardians. An anonymous cross-sectional survey was conducted from November 1, 2021, to November 30, 2021. A total of 1131 valid questionnaires were included. Among them, 417 were filled in by the patients themselves, and 714 were answered by the patients' guardians. RESULTS: The average score of clinical trial knowledge of the patients (8.25) was lower than that of the guardians (8.85). The willingness of the patients to participate in clinical trials was high (4.28), and the willingness of the patients' guardians was also high for patients to participate in clinical trials (4.35). The main promoting factors of clinical trial participation were the possibility of curing the disease. The main hindering factors of participation in clinical trials were lack of access to clinical trial information and concern about the safety and effectiveness of the trial drug. CONCLUSIONS: In conclusion, most respondents had some basic knowledge of clinical trials and high willingness to participate in clinical trials. But there were some cognitive deficiencies about clinical trials and many hindering factors to participate in clinical trials. Clinical trials of rare diseases should be patient-centered and truly meet the unmet clinical, psychological, and social needs of patients with rare diseases.

Trilhas nômades nordestinas de cuidado entre GAM e redução de danos / Northeastern nomad care trails between GAM and harm reduction / Senderos nómados nordestinos de cuidado entre GAM y reducción de daños

O presente trabalho tem por objetivo cartografar as potencialidades do encontro entre a estratégia da Gestão Autônoma da Medicação (GAM) com a perspectiva ético-política da Redução de Danos, a partir da experiência de um grupo GAM no Centro de Atenção Psicossocial para Álcool e Outras Drogas (Caps-Ad) da cidade de Garanhuns-PE. Nos valemos de diários de campo produzidos durante o grupo e, depois, em retorno ao campo para atualização da experiência. Os diários auxiliaram na composição de narrativas de análise com foco nas práticas de cuidado de si e nos efeitos do grupo nas trajetórias dos atores envolvidos e do serviço. Conclui-se que a estratégia GAM enriquece e amplia o paradigma da Redução de Danos, potencializando o cuidado integral aos que usam drogas e gerando efeitos de autonomia e emancipação nas trajetórias de cuidado e vida. (AU)

The present work aims to map the potential of the clash between the Autonomous Medication Management (GAM) strategy with the ethical-political perspective of Harm Reduction, based on the experience of a GAM group at the Psychosocial Care Center for Alcoholand Others Drugs (Caps-Ad) in the city of Garanhuns-PE. We made use of field diaries produced during the group and, later, back in the field to update the experience. The diaries helped in the composition of analysis narratives focusing on Self-Care practices and on the effects of the group on the trajectories of the actors involved and on the service. It is concluded that the GAM strategy enriches and expands the Harm Reduction paradigm, enhancing comprehensive care for drug users and generating effects of autonomy and emancipation in care and life trajectories. (AU)

El presente trabajo tiene como objetivo mapear el potencial del encuentro entre la estrategia de Gestión Autónoma de Medicamentos (GAM) con la perspectiva ético-política de Reducción de Daños, a partir de la experiencia de un grupo GAM del Centro de Atención Psicosocial de Alcohol y Otras Drogas (Caps-Ad) en la ciudad de Garanhuns-PE. Hicimos uso de diarios de campo elaborados durante el grupo y, posteriormente, de vuelta en el campo para actualizar la experiencia. Los diarios ayudaron en la composición de narrativas de análisis centradas en las prácticas de autocuidado y en los efectos del grupo en las trayectorias de los actores involucrados y el servicio. Se concluye que la estrategia GAM enriquece y amplía el paradigma de Reducción de Daños, potenciando la atención integral a los usuarios de drogas y generando efectos de autonomía y emancipación en el cuidado y en las trayectorias de vida. (AU)

Patient and clinician perspectives on shared decision-making in infertility treatment: A qualitative study.

OBJECTIVES: To explore the considerations and barriers to implementing shared decision-making (SDM) in infertility treatment among female infertility patients, their male spouses, and fertility clinicians. METHODS: Participants were recruited from a reproductive medicine hospital in China's Shandong Province using purposive sampling. One-on-one interviews were held with female infertility patients and their spouses. In addition, a focus group discussion was conducted with fertility clinicians. Data analysis was subjected to open, axial, and selective coding. RESULTS: Nineteen female infertility patients and 10 male spouses were interviewed one-on-one. Five clinicians participated in the focus group discussion. Most female patients wanted to participate in the decision-making process, and that spouses and fertility clinicians supported SDM. Furthermore, key barriers were identified from the perspectives of multiple stakeholders, including communication difficulties, psychological pressure on female patients, patient preferences, multiple treatment stages, male spousal participation, clinician-patient trust, and subjective patient factors. CONCLUSIONS/PRACTICE IMPLICATIONS: This study explored the considerations of and barriers to implementing SDM in infertility treatment. Key barriers were identified from the perspectives of multiple stakeholders. Based on the findings, clinicians should encourage patients and their spouses to actively participate in decision-making, and provide objective and realistic guidance.

Patient Participation in Forensic Psychiatric Care: The Initial Development and Content Validity of a New Instrument.

ABSTRACT: Patient participation is central in modern health care. However, it is a complex phenomenon that lacks a clear definition, and what constitutes participation varies depending on the context and theoretical perspective. It is known that patient participation in forensic psychiatric care is often rated as low by both patients and professionals, and it can be assumed that interventions to increase it are beneficial. In this process, management and staff could benefit from assessing perceived patient participation, and reliable and valid measurement instruments are essential. The aim of this study was to develop an instrument that could be used to measure experiences of participation in forensic psychiatric care from a patient perspective and test it for content validity. A definition of patient participation in forensic psychiatric care was formulated and operationalized in an instrument that an expert group, consisting of patients with ongoing care, evaluated for content validity. In total, 50 items were sorted into five different dimensions: to have good communication, to be involved, to have mutual trust, to trust the care, and to take responsibility. After psychometric testing, the instrument has the potential to become a tool to use in research, clinical work, and development work in the field of forensic psychiatric care. In addition to being used as a measure, the Patient Participation in Forensic Psychiatric Care can also be used to encourage a dialogue about their care and to make both patients and staff more aware of patient participation.

Shared Decision Making in the Care of Patients With Cancer.

Shared decision making (SDM) is a method of care that is suitable for the care of patients with cancer. It involves a collaborative conversation seeking to respond sensibly to the problematic situation of the patient, cocreating a plan of care that makes sense intellectually, practically, and emotionally. Genetic testing to identify whether a patient has a hereditary cancer syndrome represents a prime example of the importance for SDM in oncology. SDM is important for genetic testing because not only results affect current cancer treatment, cancer surveillance, and care of relatives but also these tests generate both complex results and psychological concerns. SDM conversations should take place without interruptions, disruptions, or hurry and be supported, where available, by tools that assist in conveying the relevant evidence and in supporting plan development. Examples of these tools include treatment SDM encounter aids and the Genetics Adviser. Patients are expected to play a key role in making decisions and implementing plans of care, but several evolving challenges related to the unfettered access to information and expertise of varying trustworthiness and complexity in between interactions with clinicians can both support and complicate this role. SDM should result in a plan of care that is maximally responsive to the biology and biography of each patient, maximally supportive of each patient's goals and priorities, and minimally disruptive of their lives and loves.

Mental disorders, participation, and trajectories in the Danish colorectal cancer programme: a population-based cohort study.

BACKGROUND: People with mental disorders exhibit increased mortality due to colorectal cancer, despite having a similar incidence to the general population. We aimed to evaluate the extent to which people with mental disorders participate in organised colorectal cancer screening. METHODS: We conducted a population-based cohort study of all Danish residents aged 50-74 years who were invited to undergo biennial faecal immunochemical testing between March 1, 2014, and Sept 30, 2018. We used national registry data from all first-time invitees. The primary endpoint was participation within 90 days of invitation. We calculated the proportion who participated and assessed their screening results and adherence to and completeness of follow-up colonoscopy according to their history of mental disorders, classified as none, mild or moderate, or severe. We computed crude and adjusted participation differences in percentage points and participation ratios using the pseudo-observations method. FINDINGS: Of 2 036 704 people who were invited, we included 2 036 352 in the final cohort, of whom 1 008 045 (49·5%) were men and 1 028 307 (50·5%) were women, with a mean age of 60·7 years (SD 8·3, range 49-78). Data on ethnicity were not collected. Compared with people with no mental disorders, the adjusted analysis showed lower participation among people with mild or moderate mental disorders (men: participation difference -4·4 percentage points [95% CI -4·7 to -4·1]; women: -3·8 percentage points [-4·1 to -3·6]) and severe mental disorders (men: participation difference -13·8 percentage points [-14·3 to -13·3]; women: -15·4 percentage points [-15·8 to -14·9]). People with mental disorders had a higher proportion of positive faecal immunochemical test results, lower adherence to colonoscopy, and more incomplete colonoscopies than people without mental disorders. INTERPRETATION: People with mental disorders were less likely to participate in colorectal cancer screening than those without these disorders. Patients with mental disorders could benefit from support or encouragement from their general practitioner or mental health-care facility to participate in cancer screening. Potential interventions should consider type of mental disorder, as needs might differ. FUNDING: Danish Cancer Society, Danish Health Foundation.

Service user involvement in mental health service commissioning, development and delivery: A systematic review of service level outcomes.

INTRODUCTION: Service user involvement is increasingly considered essential in mental health service development and delivery. However, the impact of this involvement on services is not well documented. We aimed to understand how user involvement shapes service commissioning, development and delivery, and if/how this leads to improved service-level outcomes. METHODS: A systematic review of electronic databases (MEDLINE, PsycINFO, CINAHL and EMBASE databases) was undertaken in June and November 2022 for studies that incorporated patient involvement in service development, and reported service-level outcomes. Included studies were synthesised into a logic model based on inputs (method of involvement), activities (changes to service) and outputs (indicators of improvement). PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines were followed when conducting this review. RESULTS: From 10,901 records identified, nine studies were included, of which six were judged to have used co-production or co-design approaches. Included studies described service user involvement ranging from consultation to co-production. We identified a range of outputs associated with service user involvement in service planning and delivery, and reported these in the form of a logic model. These service-level outputs included improved treatment accessibility, increased referrals and greater service user satisfaction. Longer-term outcomes were rarely reported and hence it was difficult to establish whether outputs are sustained. CONCLUSION: More extensive forms of involvement, namely, co-design and co-production, were associated with more positive and substantial outputs in regard to service effectiveness than more limited involvement methods. However, lived experience contributions highlighted service perception outputs may be valued more highly by service users than professionals and therefore should be considered equally important when evaluating service user involvement. Although evidence of longer term outcomes was scarce, meaningful involvement of service users in service planning and delivery appeared to improve the quality of mental health services. PATIENT OR PUBLIC CONTRIBUTION: Members of a lived experience advisory panel contributed to the review findings, which were co-authored by a peer researcher. Review findings were also presented to stakeholders including service users and mental health professionals.

"If I don't take my treatment, I will die and who will take care of my child?": An investigation into an inclusive community-led approach to addressing the barriers to HIV treatment adherence by postpartum women living with HIV.

INTRODUCTION: Initiatives to support adherence to HIV treatment in South Africa are often centred on service delivery thereby avoiding key challenges to adherence: stigma and poverty. In contrast, this study aims to demonstrate the strength of an inclusive research and programme approach to improving the lives of people living with HIV and simultaneously ARV adherence. METHODS: Participatory Action Research combined with a visual participatory method (Photovoice) was used by postpartum women to share their experience of taking ARVs. The research was analysed from an interpretative and critical paradigm where both the women and a non-governmental organisation collaborated in the data collection, analysis and interpretation of the findings. Together, they then disseminated the findings and used a community-led approach to create a programme addressing these barriers effectively. FINDINGS: Two main barriers to ARV adherence emerged: the anticipated stigma associated with issues of disclosure and poverty epitomized by alcohol abuse, gender-based violence and hunger. The women and the NGO staff successfully presented their findings at conferences and collaborated to develop a programme of support for all women living with HIV in the area. The programme addresses each of the issues raised by the co-researchers and is run via a community-led process where the participants lead on design, implementation, and monitoring and ultimately will revise the programme as needed. DISCUSSION: The inclusive approach of this study enabled these postpartum women to portray the intersectional nature of both HIV stigma and poverty that affects their lives. By working with the local NGO to develop a programme based on these insights, they were able to tailor specific interventions to the issues women living with HIV face in their area. In doing so, they aim to improve the lives of people living with HIV by demonstrating a more sustainable way to impact ARV adherence. CONCLUSION: Currently, health service insistence on measuring ARV adherence does not address the core barriers to taking ARVs and misses the opportunity to focus on the long term health and well-being of people living with HIV. In contrast, locally targeted participatory research and programme development based on inclusivity, collaboration and ownership do address the fundamental challenges of people living with HIV. In doing so, it can have a greater impact on their long term well-being.

A Virtual Photovoice Study of Older African Americans Perceptions of Neurovascular Clinical Trials.

BACKGROUND: Alzheimer disease (AD) poses a major public health crisis, especially among African Americans (AAs) who are up to 3 times more likely to develop AD compared with non-Hispanic Whites. Moreover, cardiovascular risk factors represent a precursor to cognitive decline, which contributes to racial/ethnic disparities seen within AD. Despite these disparities, AAs are underrepresented in neurovascular research. The purpose of this qualitative virtual photovoice project is to explore how older Midwestern AAs perceive neurovascular clinical trials. METHODS: Five photovoice sessions were held virtually over a 3-month period. Participants took photos each week that captured the salient features of their environment that described their perceptions and experiences related to neurovascular clinical trials. Structured discussion using the SHOWED method was used to generate new understandings about the perspectives and experiences in neurovascular clinical trials. Data was analyzed using strategies in participatory visual research. RESULTS: A total of 10 AAs aged 55 years and older participated and a total of 6 themes emerged from the photovoice group discussions. CONCLUSION: Findings from this study inform the development of culturally appropriate research protocols and effective recruitment strategies to enhance participation among older AAs in neurovascular clinical trials.

"It's That They Treated Me Like an Object": A Qualitative Study on the Participation of People Diagnosed with Psychotic Disorders in Their Health Care.

The mental health recovery model is based on shared decision making, in which patients' preferences and perceptions of the care received are taken into account. However, persons with psychosis usually have very few opportunities to participate in this process. The present study explores the experiences and perceptions of a group of patients with psychosis-in some cases longstanding, in others more recently diagnosed-concerning their participation in the decisions taken about the approach to their condition and about the attention received from healthcare professionals and services. For this purpose, we performed a qualitative analysis of the outcomes derived from five focus groups and six in-depth interviews (36 participants). Two major themes, with five sub-themes, were identified: shared decision-making (drug-centred approach, negotiation process, and lack of information) and the care environment and styles of clinical practice as determinants (aggressive versus person-centred environments, and styles of professional practice). The main conclusions drawn are that users want to participate more in decision making, they want to be offered a range of psychosocial options from the outset and that their treatment should be based on accessibility, humanity and respect. These findings are in line with the guidelines for clinical practice and should be taken into account in the design of care programmes and the organisation of services for persons with psychosis.

Perceived Participation in Decision-Making on Primary Surgery and Associated Factors Among Early Breast Cancer Patients: A Cross-sectional Study.

BACKGROUND: Breast cancer patients wish to participate in the treatment decision-making, but the perceived participation was inconsistent with the willingness, leading to poor patient outcomes. OBJECTIVE: The aims of this study were to explore the perceived participation in the primary surgery decision-making among Chinese patients with early-stage breast cancer (BCa) and to analyze the relationships of demographic and clinical factors, participation competence, self-efficacy, social support, and doctors' promotion of participation with the guidance of the capability, opportunity, motivation-behavior system (the COM-B system). METHODS: Paper surveys were used to collect data from 218 participants. The participation competence, self-efficacy, social support, and the doctor facilitation of involvement were evaluated to measure factors related to perceived participation among early-stage BCa. RESULTS: Perceived participation was low, and participants with a high level of participation competence, self-efficacy, and social support and who were employed and had a higher education level and higher family income perceived higher participation in primary surgery decision-making. CONCLUSIONS: Perceived participation was low and may be facilitated by patients' internal and external factors during the decision-making process. Health professionals should be aware that patient participation in decision-making is a type of self-care health behavior, and targeted decision support interventions should be provided to facilitate participation. IMPLICATIONS FOR PRACTICE: Patient-perceived participation may be evaluated from the perspective of self-care management behaviors among BCa patients. Nurse practitioners should emphasize their important roles in providing information, patient education, and psychological support to better contribute to the course of the treatment decision-making process for BCa patients who faced primary surgery.

The Perspectives of Surrogates and Healthcare Providers Regarding SDM (Shared Decision-Making).

The purpose of this paper is to explore the attitudes of surrogacy and medical service providers toward SDM and to identify the barriers and promoters of SDM in this population. To this end, we conducted a qualitative study of surrogacy and medical service providers in the First Affiliated Hospital of Soochow University using semistructured interviews. Thirty participants (11 agents, 12 ICU physicians, and 7 ICU nurses) were interviewed. The three stakeholders showed different attitudes toward SDM. They reported barriers to SDM, including insufficient cognition of decision-makers, high expectations, negative psychological experiences, previous decision-making experiences, excessive workload, heavy financial burden, and lack of decision AIDS. They reported facilitators of SDM, including trust, effective communication, decision support, value clarification, outcome commitment, and continuous service. This study explored the different attitudes of the three stakeholders and identified various barriers and facilitators of SDM. It highlights the need to develop localised decision AIDS and to involve agents and nurses more in the decision-making process. Therefore, this paper identifies barriers and facilitators of SDM in this population. In addition, the study identified various barriers and facilitators to SDM and highlighted the need to develop localised decision AIDS and involve agents and nurses more in the decision-making process. Finally, the barriers and facilitators of SDM are established. The paper also shows that the development of localized decision AIDS and greater involvement of agents and nurses in the decision-making process are integral to good treatment outcomes.

The Patient Activation Measure (PAM) and the pandemic: Predictors of patient activation among Australian health consumers during the COVID-19 pandemic.

BACKGROUND: Preventative healthcare is crucial for improving individual patient outcomes and is integral to sustainable health systems. The effectiveness of prevention programs is enhanced by activated populations who are capable of managing their own health and are proactive to keep themselves well. However, little is known about the level of activation among people drawn from general populations. We used the Patient Activation Measure (PAM) to address this knowledge gap. METHODS: A representative, population-based survey of Australian adults was conducted in October 2021 during the Delta strain outbreak of the COVID-19 pandemic. Comprehensive demographic information was collected, and the participants completed the Kessler-6 psychological distress scale (K6) and PAM. Multinomial and binomial logistic regression analyses were performed to determine the effect of demographic factors on PAM scores, which are categorised into four levels: 1-participants disengaged with their health; 2-becoming aware of how to manage their health; 3-acting on their health; and 4-engaging with preventative healthcare and advocating for themselves. RESULTS: Of 5100 participants, 7.8% scored at PAM level 1; 13.7% level 2, 45.3% level 3, and 33.2% level 4. The mean score was 66.1, corresponding to PAM level 3. More than half of the participants (59.2%) reported having one or more chronic conditions. Respondents aged 18 to 24 years old were twice as likely to score PAM level 1 compared with people aged 25-44 (p < .001) or people aged over 65 years (p < .05). Speaking a language other than English at home was significantly associated with having low PAM (p < .05). Greater psychological distress scores (K6) were significantly predictive of low PAM scores (p < .001). CONCLUSION: Overall, Australian adults showed high levels of patient activation in 2021. People with lower incomes, of younger age, and those experiencing psychological distress were more likely to have low activation. Understanding the level of activation enables targeting sociodemographic groups for extra support to increase the capacity to engage in prevention activities. Conducted during the COVID-19 pandemic, our study provides a baseline for comparison as we move out of the pandemic and associated restrictions and lockdowns. PATIENT OR PUBLIC CONTRIBUTION: The study and survey questions were co-designed with consumer researchers from the Consumers Health Forum of Australia (CHF) as equal partners. Researchers from CHF were involved in the analysis of data and production of all publications using data from the consumer sentiment survey.

Management reasoning and patient-clinician interactions: Insights from shared decision-making and simulated outpatient encounters.

PURPOSE: To expand understanding of patient-clinician interactions in management reasoning. METHODS: We reviewed 10 videos of simulated patient-clinician encounters to identify instances of problematic and successful communication, then reviewed the videos again through the lens of two models of shared decision-making (SDM): an 'involvement-focused' model and a 'problem-focused' model. Using constant comparative qualitative analysis we explored the connections between these patient-clinician interactions and management reasoning. RESULTS: Problems in patient-clinician interactions included failures to: encourage patient autonomy; invite the patient's involvement in decision-making; convey the health impact of the problem; explore and address concerns and questions; explore the context of decision-making (including patient preferences); meet the patient where they are; integrate situational preferences and priorities; offer >1 viable option; work with the patient to solve a problem of mutual concern; explicitly agree to a final care plan; and build the patient-clinician relationship. Clinicians' 'management scripts' varied along a continuum of prioritizing clinician vs patient needs. Patients also have their own cognitive scripts that guide their interactions with clinicians. The involvement-focused and problem-focused SDM models illuminated distinct, complementary issues. CONCLUSIONS: Management reasoning is a deliberative interaction occurring in the space between individuals. Juxtaposing management reasoning alongside SDM generated numerous insights.