Experiences of stigma in healthcare settings among adults living with HIV in the Islamic Republic of Iran

<p>Abstract</p> <p>Background</p> <p>People living with HIV (PLHIV) sometimes experience discrimination. There is little understanding of the causes, forms and consequences of this stigma in Islamic countries. This qualitative study explored perceptions and experiences of PLHIV regarding both the quality of healthcare and the attitudes and behaviours of their healthcare providers in the Islamic Republic of Iran.</p> <p>Methods</p> <p>In-depth, semi-structured interviews were held with a purposively selected group of 69 PLHIV recruited from two HIV care clinics in Tehran. Data were analyzed using the content analysis approach.</p> <p>Results and discussion</p> <p>Nearly all participants reported experiencing stigma and discrimination by their healthcare providers in a variety of contexts. Participants perceived that their healthcare providers' fear of being infected with HIV, coupled with religious and negative value-based assumptions about PLHIV, led to high levels of stigma. Participants mentioned at least four major forms of stigma: (1) refusal of care; (2) sub-optimal care; (3) excessive precautions and physical distancing; and (4) humiliation and blaming. The participants' healthcare-seeking behavioural reactions to perceived stigma and discrimination included avoiding or delaying seeking care, not disclosing HIV status when seeking healthcare, and using spiritual healing. In addition, emotional responses to perceived acts of stigma included feeling undeserving of care, diminished motivation to stay healthy, feeling angry and vengeful, and experiencing emotional stress.</p> <p>Conclusions</p> <p>While previous studies demonstrate that most Iranian healthcare providers report fairly positive attitudes towards PLHIV, our participants' experiences tell a different story. Therefore, it is imperative to engage both healthcare providers and PLHIV in designing interventions targeting stigma in healthcare settings. Additionally, specialized training programmes in universal precautions for health providers will lead to stigma reduction. National policies to strengthen medical training and to provide funding for stigma-reduction programming are strongly recommended. Investigating Islamic literature and instruction, as well as requesting official public statements from religious leaders regarding stigma and discrimination in healthcare settings, should be used in educational intervention programmes targeting healthcare providers. Finally, further studies are needed to investigate the role of the physician and religion in the local context.</p

Study protocol for a controlled trial of an eHealth system utilising patient reported outcome measures for personalised treatment and care: PROMPT-Care 2.0

Abstract Background Routine assessment and clinical utilisation of patient-reported outcome (PRO) measures can lead to improved patient outcomes. The PROMPT-Care eHealth system facilitates PRO data capture from cancer patients, data linkage and retrieval to support clinical decisions, patient self-management, and shared care. Pilot testing demonstrated acceptability and feasibility of PROMPT-Care Version 1.0. This study aims to implement PROMPT-Care Version 2.0 and determine its efficacy in reducing emergency department (ED) presentations, and improving chemotherapy delivery and health service referrals, compared to usual care. Methods Groups eligible to participate in the intervention arm of this controlled trial are patients receiving cancer care (including follow-up). PROMPT-Care patients will complete monthly assessments (distress, symptoms, unmet needs) until voluntary withdrawal or death. In Version 1.0, the care team accessed patients’ clinical feedback reports in ‘real time’ to guide their care, and patients received links to support their self-management, tailored to their PRO responses. Version 2.0 was extended to include: i) an additional alert system notifying the care team of ongoing unresolved clinical issues, ii) patient self-management resources, and iii) an auto-populated Treatment Summary and Survivorship Care Plan (SCP). The control population will be patients extracted from hospital databases of the general cancer patient population who were seen at the participating cancer therapy centres during the study period, with a ratio of 1:4 of intervention to control patients. A minimum sample size of 1760 (352 intervention and 1408 control) patients will detect a 14% reduction in the number of ED presentations (primary outcome) in the PROMPT-Care group compared with the control group. Intervention patients will provide feedback on system usability and value of the self-management materials; oncology staff will provide feedback on usefulness of PROMPT-Care reports, response to clinical alerts, impact on routine care, and usefulness of the SCPs; and GPs will provide feedback on the usefulness of the SCPs and attitudes towards shared-care models of survivorship care planning. Discussion This study will inform the PROMPT-Care system’s impact on healthcare utilisation and utility as an alternative model for ongoing supportive care. Trial registration Australian New Zealand Clinical Trials Registry (ACTRN12616000615482) on 12th May 2016 (www.anzctr.org.au)

Lower trial participation by culturally and linguistically diverse (CALD) cancer patients is largely due to language barriers

© 2017 John Wiley & Sons Australia, Ltd Aim: Clinical trials play a critical role in advancing cancer care, but international research shows that few cancer patients, particularly culturally and linguistically diverse (CALD) patients, participate in trials. This limits generalizability of trial results and increases health disparities. This study aimed to establish rates and correlates of trial participation among CALD patients in South Western Sydney Local Health District (SWSLHD), a highly culturally diverse area. Methods: Data from all cancer patients diagnosed and/or treated in SWSLHD from January 2006 to July 2016 were analyzed retrospectively. The primary outcome was trial enrolment among patients born in non-English speaking countries (CALD) versus English speaking countries (non-CALD). Multivariable logistic regression evaluated CALD status as a predictor of trial participation. Moderators of trial participation by the different CALD groups, namely those whose preferred language was English (CALD-PLE) or was not English (CALD-PLNE), were examined by testing interactions between CALD status and other demographic and clinical variables. Results: A total of 19 453 patients were analyzed (54.9% non-CALD, 16.5% CALD-PLE, 18.5% CALD-PLNE). Overall, 7.4% of patients were enrolled in a trial. Trial participation was significantly lower in CALD patients than non-CALD patients (5.7% vs 8.4%; odds ratio [OR] = 0.80; 95% confidence interval [CI], 0.69–0.91; P = 0.001). CALD-PLNE patients were less likely to participate in trials than non-CALD (OR = 0.45; 95% CI, 0.36–0.56; P < 0.0001) and CALD-PLE patients (OR = 0.53; 95% CI, 0.67–0.41; P < 0.0001). Conclusions: Limited English proficiency seems particularly unfavorable to trial participation. Development and evaluation of strategies to overcome language barriers (e.g. simplified and translated multimedia participant information materials) is needed

Cancer care team's management of clinical alerts generated by electronically collected patient reported outcomes : we could do better

Electronically administered patient-reported outcome measures (ePROMs) are effective digital health tools for informing clinicians about cancer patients’ symptoms and facilitating timely patient-centred care. This paper describes the delivery of healthcare activities supported by the PROMPT-Care model, including ePROMs generated clinical alerts, cancer care team (CCT) response to alerts, and patients’ perceptions of the CCT response and ePROMs system. This mixed-methods study includes cancer patients from four cancer therapy centres in New South Wales, Australia. Quantitative and qualitative data were collected regarding clinical alert activity, CCT response, and patient perceptions of the CCT responses and ePROMs system. Qualitative data were thematically analysed. Of the 328 participants whose care was informed by the digital health tool, 70.8% (n = 233) generated at least one alert during the trial period, with 877 alerts generated in total. Although 43.7% (n = 383) were actioned by the CCT, at least 80% of participants found follow-up CCT phone calls beneficial, with multiple benefits confirmed in interviews. The cancer care delivery arm of the PROMPT-Care trial involving clinical alerts to the CCT was positively perceived by most participants, resulting in a diverse range of benefits. However, further work is required, informed by implementation science, to improve the percentage of actioned clinical alerts