Oncology patients' willingness to report their medication safety concerns from home: a qualitative study.

PURPOSE: Oncology patients often struggle to manage their medications and related adverse events during transitions of care. They are expected to take an active role in self-monitoring and timely reporting of their medication safety events or concerns to clinicians. The purpose of this study was to explore the factors influencing oncology patients' willingness to report adverse events or concerns related to their medication after their transitions back home. METHODS: A qualitative interview study was conducted with adult patients with breast, prostate, lung, or colorectal cancer who experienced care transitions within the previous year. A semi-structured interview guide was developed to understand patients' perceptions of reporting mediation-related safety events or concerns from home. All interviews were conducted via phone calls, recorded, and transcribed for thematic data analysis. RESULTS: A total of 41 individuals participated in the interviews. Three main themes and six subthemes emerged, including patients' perceived relationship with clinicians (the quality of communication and trust in clinicians), perceived severity of adverse medication events (perceived severe vs. non-severe events), and patient activation in self-management (self-efficacy in self-management and engagement in monitoring health outcomes). CONCLUSION: The patient-clinician relationship significantly affects patients' reporting behaviors, which can potentially interact with other factors, including the severity of adverse events. It is important to engage oncology patients in medication safety self-reporting from home by enhancing health communication, understanding patients' perceptions of severe events, and promoting patient activation. By addressing these efforts, healthcare providers should adopt a more patient-centered approach to enhance the overall quality and safety of oncological care.

Using brief reflections to capture and evaluate end-user engagement: a case example using the COMPASS study.

BACKGROUND: Use of participatory research methods is increasing in research trials. Once partnerships are established with end-users, there is less guidance about processes research teams can use to successfully incorporate end-user feedback. The current study describes the use of a brief reflections process to systematically examine and evaluate the impact of end-user feedback on study conduct. METHODS: The Comparative Effectiveness of Trauma-Focused and Non-Trauma- Focused Treatment Strategies for PTSD among those with Co-Occurring SUD (COMPASS) study was a randomized controlled trial to determine the effectiveness of trauma-focused psychotherapy versus non-trauma-focused psychotherapy for Veterans with co-occurring posttraumatic stress disorder and substance use disorder who were entering substance use treatment within the Department of Veterans Affairs. We developed and paired a process of "brief reflections" with our end-user engagement methods as part of a supplemental evaluation of the COMPASS study engagement plan. Brief reflections were 30-minute semi-structured discussions with the COMPASS Team following meetings with three study engagement panels about feedback received regarding study issues. To evaluate the impact of panel feedback, 16 reflections were audio-recorded, transcribed, rapidly analyzed, and integrated with other study data sources. RESULTS: Brief reflections revealed that the engagement panels made recommended changes in eight areas: enhancing recruitment; study assessment completion; creating uniformity across Study Coordinators; building Study Coordinator connection to Veteran participants; mismatch between study procedures and clinical practice; therapist skill with patients with active substance use; therapist burnout; and dissemination of study findings. Some recommendations positively impact study conduct while others had mixed impact. Reflections were iterative and led to emergent processes that included revisiting previously discussed topics, cross-pollination of ideas across panels, and sparking solutions amongst the Team when the panels did not make any recommendations or recommendations were not feasible. CONCLUSIONS: When paired with end-user engagement methods, brief reflections can facilitate systematic examination of end-user input, particularly when the engagement strategy is robust. Reflections offer a forum of accountability for researchers to give careful thought to end-user recommendations and make timely improvements to the study conduct. Reflections can also facilitate evaluation of these recommendations and reveal end-user-driven strategies that can effectively improve study conduct. TRIAL REGISTRATION: ClinicalTrials.gov (NCT04581434) on October 9, 2020; https://clinicaltrials.gov/ct2/show/study/NCT04581434?term=NCT04581434&draw=2&rank=1 .

The role of Patient and public involvement (PPI) in pre-clinical spinal cord research: An interview study.

BACKGROUND: Patient and public involvement in research (PPI) has many benefits including increasing relevance and impact. While using PPI in clinical research is now an established practice, the involvement of patients and the public in pre-clinical research, which takes place in a laboratory setting, has been less frequently described and presents specific challenges. This study aimed to explore the perspectives of seriously injured rugby players' who live with a spinal cord injury on PPI in pre-clinical research. METHODS: Semi-structured interviews were conducted via telephone with 11 seriously injured rugby players living with spinal cord injury on the island of Ireland. A purposive sampling approach was used to identify participants. Selected individuals were invited to take part via gatekeeper in a charitable organisation that supports seriously injured rugby players. Interviews were transcribed verbatim and analysed thematically. FINDINGS: Six themes were identified during analysis: 'appreciating potential benefits of PPI despite limited knowledge', 'the informed perspectives of people living with spinal cord injury can improve pre-clinical research relevance', 'making pre-clinical research more accessible reduces the potential for misunderstandings to occur', 'barriers to involvement include disinterest, accessibility issues, and fear of losing hope if results are negative', 'personal contact and dialogue helps people feel valued in pre-clinical research, and 'PPI can facilitate effective dissemination of pre-clinical research as desired by people living with spinal cord injury.' CONCLUSION: People affected by spinal cord injury in this study desire further involvement in pre-clinical spinal cord injury research through dialogue and contact with researchers. Sharing experiences of spinal cord injury can form the basis of PPI for pre-clinical spinal cord injury research.

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.

The influence of health literacy, anxiety and education on shared decision making and decisional conflict in older adults, and the mediating role of patient participation: A video observational study.

OBJECTIVE: To explore the relationship between personal characteristics of older adults with multiple chronic conditions (MCCs) and perceived shared decision making (SDM) resp. decisional conflict. METHODS: In a video-observational study (N = 213) data were collected on personal characteristics. The main outcomes were perceived level of SDM and decisional conflict. The mediating variable was participation in the SDM process. A twostep mixed effect multilinear regression and a mediation analysis were performed to analyze the data. RESULTS: The mean age of the patients was 77.3 years and 56.3% were female. Health literacy (ß.01, p < .001) was significantly associated with participation in the SDM process. Education (ß = -2.43, p = .05) and anxiety (ß = -.26, p = .058) had a marginally significant direct effect on the patients' perceived level of SDM. Education (ß = 12.12, p = .002), health literacy (ß = -.70, p = .005) and anxiety (ß = 1.19, p = .004) had a significant direct effect on decisional conflict. The effect of health literacy on decisional conflict was mediated by participation in SDM. CONCLUSION: Health literacy, anxiety and education are associated with decisional conflict. Participation in SDM during consultations plays a mediating role in the relationship between health literacy and decisional conflict. PRACTICE IMPLICATIONS: Tailoring SDM communication to health literacy levels is important for high quality SDM.

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.

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.

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.

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.

"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.

"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.

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.

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.