Search

BackgroundAlthough the Internet is commonly used to recruit samples in studies of human immunodeficiency virus (HIV)-related risk behaviors, it has not been used to measure patient-reported well-being. As the burden of long-term chronic HIV infection rises, the Internet may offer enormous potential for recruitment to research and interventions. ObjectiveThis study aimed to compare two samples of gay men living with HIV, one recruited via the Web and the other recruited in outpatient settings, in terms of self-reported physical and psychological symptom burden. MethodsThe Internet sample was recruited from a UK-wide Web-based survey of gay men with diagnosed HIV. Of these, 154 respondents identified themselves as resident in London and were included in this analysis. The HIV clinic sample was recruited from five HIV outpatient clinics. Of these participants, 400 gay men recruited in London clinics were included in this analysis. ResultsThe Web-based sample was younger than the clinic sample (37.3 years, SD 7.0 vs 40.9 years, SD 8.3), more likely to be in paid employment (72.8%, 99/136 vs 60.1%, 227/378), less likely to be on antiretroviral therapy (ART) (58.4%, 90/154 vs 68.0%, 266/391), and had worse mean psychological symptom burden compared to the clinic sample (mean scores: 1.61, SD 1.09 vs 1.36, SD 0.96) but similar physical symptom burden (mean scores: 0.78, SD 0.65 vs 0.70, SD 0.74). In multivariable logistic regression, for the physical symptom burden model, adjusted for age, ethnicity, employment status, and ART use, the recruitment setting (ie, Web-based vs clinic) was not significantly associated with high physical symptom score. The only variable that remained significantly associated with high physical symptom score was employment status, with those in employment being less likely to report being in the upper (worst) physical symptom tertile versus the other two tertiles (adjusted OR 0.41, 95% CI 0.28-0.62, P

Context: LGBTQIA+ people worldwide experience discrimination, violence, and stigma that lead to poor health outcomes. Policy plays a crucial role in ensuring health equity and safety for LGBTQIA+ communities. Given Lancet Commissions' substantial impact on health policy across domains, we aimed to determine how LGBTQIA+ communities and their care needs are incorporated throughout Lancet Commission reports and recommendations. Methods: Using critical discourse analysis, we analyzed 102 Commissions for inclusion of and reference to LGBTQIA+ communities using 36 key terms. Three levels of analysis were conducted: 1) micro-level (overview of terminology use); 2) meso-level (visibility and placement of LGBTQIA+ references); and 3) macro-level (outlining characterizations and framing of references with consideration of broader social discourses). Findings: 36 of 102 (35%) Commissions referenced LGBTQIA+ communities with 801 mentions in total. There were minimal (9/36) references made in the "Executive Summary," "Recommendations," and/or "Key Messages" sections of reports. LGBTQIA+ communities were most frequently discussed in reports related to HIV/AIDS and sexual and reproductive health. Few Commissions related to public health, or chronic conditions (9/60) referenced LGBTQIA+ communities. Some reports made non-specific or unexplained references; many discussed the LGBTQIA+ population without specific reference to sub-groups. LGBTQIA+ communities were often listed alongside other marginalized groups without rationale or a description of shared needs or experiences. We identified framings (legal, vulnerability, risk) and characterizations (as victims, as blameworthy, as a problem) of LGBTQIA+ communities that contribute to problematizing discourse. Conclusions: LGBTQIA+ people were rarely included in the Commissions, resulting in an inadvertent marginalization of their health needs. Policy initiatives must consider LGBTQIA+ groups from a strengths-based rather than problematizing perspective, integrating evidence-based approaches alongside community-based stakeholder engagement to mitigate inequities and promote inclusive care and policymaking. [ABSTRACT FROM AUTHOR]

Background: Palliative care is an essential component of children's health services but is accessed by fewer children than could potentially benefit. Aim: Appraise the evidence to identify factors influencing referral and access to children's palliative care, and interventions to reduce barriers and improve referrals. Design: Scoping review following the six stages of the Arksey and O'Malley framework. Data were charted using an adapted version of the socioecological framework. Data sources: CINAHL, MEDLINE, PsycINFO, EMBASE, Cochrane Library were searched for primary studies of any design and literature/systematic reviews. Studies reporting barriers/facilitators and interventions in relation to referral of children with a life-limiting condition to palliative care, in any setting, were included. Results: One hundred ninety five articles (primary qualitative and quantitative studies, reviews) were retained (153 reporting barriers/facilitators; 40 interventions; 2 both). Multiple factors were identified as barriers/facilitators: Individual level: underlying diagnosis, prognostic uncertainty, parental attitudes, staff understanding/beliefs; Interpersonal level: family support, patient-provider relationships, interdisciplinary communication; Organisational level: referral protocols, workforce, leadership; Community level: cultural norms, community resources, geography; Society level: policies and legislation, national education, economic environment, medication availability. Most of these factors were bi-directional in terms of influence. Interventions (n = 42) were mainly at the organisational level for example, educational programmes, screening tools/guidelines, workplace champions and new/enhanced services; one-third of these were evaluated. Conclusion: Barriers/facilitators to paediatric palliative care referral are well described. Interventions are less well described and often unevaluated. Multi-modal approaches incorporating stakeholders from all levels of the socioecological framework are required to improve paediatric palliative care referral and access. [ABSTRACT FROM AUTHOR]

Background: Serious health-related suffering is predicted to double in low- and middle-income countries by 2060. Primary care offers the best opportunity to meet Universal Health Coverage in an equitable way. Primary palliative care growth should be evidence-based to ensure provision is feasible, acceptable and culturally congruent. Aim: To identify the current evidence related to primary palliative care and to describe how primary palliative is defined in this setting, dominant typologies of care and meaningful outcome measures in LMICs. Design: A systematic review and thematic synthesis was conducted. We described the nature, extent and distribution of published literature on primary palliative care in low- and middle-income countries, use thematic synthesis to characterize typologies of primary palliative care and design a process model for care delivery in low- and middle-income countries. Data sources: Medline, Psychinfo, Global Health, Embase and CINAHL. Results: Thirty-five publications were included. Nearly half took place in Asia (n = 16, 45.7%). We identified five dominant typologies of primary palliative care, including delivery in primary care clinics by multidisciplinary healthcare teams and palliative care specialists, in people's homes by healthcare professionals and volunteers and in tertiary healthcare facilities by generalists. We designed a process model for how these models operate within larger health systems and identified barriers and facilitators to implementing primary palliative care in this context. Conclusion: Evidence supporting primary palliative care in low- and middle-income countries is limited, and much of the published literature comes from Asia and southern Africa. Health systems in low- and middle-income countries have unique strengths and needs that affect primary palliative care services that should guide how services evolve to meet future need. [ABSTRACT FROM AUTHOR]

The Global Task Force on Chronic Pain in HIV published seven research priorities in the field of HIV-associated chronic pain in 2019: (1) causes; (2) management; (3) treatment individualization and integration with addiction treatment; (4) mental and social health factors; (5) prevalence; (6) treatment cost effectiveness; and (7) prevention. The current study used a web-based survey to determine whether the research topics were aligned with the priorities of adults with lived experiences of HIV and chronic pain. We also collected information about respondents' own pain and treatment experiences. We received 311 survey responses from mostly US-based respondents. Most respondents reported longstanding, moderate to severe, multisite pain, commonly accompanied by symptoms of anxiety and/or depression. The median number of pain treatments tried was 10 (IQR = 8, 13), with medications and exercise being the most common modalities, and opioids being viewed as the most helpful. Over 80% of respondents considered all research topics either "extremely important" or "very important". Research topic #2, which focused on optimizing management of pain in people with HIV, was accorded the greatest importance by respondents. These findings suggest good alignment between the priorities of researchers and US-based people with lived experience of HIV-associated chronic pain. [ABSTRACT FROM AUTHOR]

Person‐centred care is a critical attribute of high‐quality healthcare, promoting quality of life, improving an individual's interaction with the health system and valuing people's social networks [1]. Lifesaving antiretroviral therapy [...]

In Ethiopia, there is a great need for culturally relevant, sustainable palliative care. Profound poverty and limited health care resources magnify the impact of disease in Ethiopia, one of the poorest countries in the world. The impacts of high burden of disease and poor access to health care include physical suffering, and detrimental economic effects. Thus, the potential for palliative care to improve health care allocation and reduce suffering is substantial. An immediate action could include harnessing the infrastructure of the iddir, which are centuries-old, indigenous neighborhood organizations that provide care and support for families during the time of a death. We propose a model of community-based palliative care instantiated within iddirs, in which they are trained as volunteers to deliver basic palliative care. Shifting the gaze of global health research towards local solutions in Ethiopia may reveal sustainable, effective strategies to improve care for millions in this vulnerable population. [ABSTRACT FROM AUTHOR]

Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. Aim: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. Design: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. Setting/participants: Children 5–⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. Results: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. Conclusion: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice. [ABSTRACT FROM AUTHOR]

Objective: To identify predictors of sexual satisfaction in patients with advanced cancer and their family caregivers. Methods: Cross‐sectional study using baseline survey data from a randomized controlled trial in six European countries. Patients with advanced cancer and their family caregiver completed measures on sexual satisfaction (one item from Functional Assessment of Cancer Therapy ‐ General questionnaire for patients and Caregiver Quality of Life Index‐Cancer scale for family caregivers) and health‐related characteristics. Multivariable linear regressions were performed for all predictors (identified based on literature) with sexual satisfaction as dependent variable. Results: The sample comprised 431 patient‐family caregiver dyads. Patients with prostate or gynecological cancer reported lower sexual satisfaction (respectively B = −0.267 95% CI: −1.674, −0.594 and B = −0.196, 95% CI −2.103, −0.452). Higher emotional (B = 0.278, 95% CI 0.024, 0.057) physical (B = 0.305, 95% CI 0.012, 0.025) and social functioning (B = 0.151, 95% CI 0.001, 0.013), global health (B = 0.356, 95% CI 0.007, 0.013) and social wellbeing (B = 0.161, 95% CI 0.013, 0.082) among patients were associated with higher sexual satisfaction. Among family caregivers, sexual satisfaction was lower with increased age (B = −0.142, 95% CI −0.022, −0.004). Higher emotional functioning (B = 0.027, 95% CI 0.011, 0.043) and quality of life (B = 0.165, 95% CI −0.165, 0.716) were associated with higher sexual satisfaction in family caregivers. Conclusions: The results underscore that sexual wellbeing of patients and family caregivers is related to health related factors in physical, emotional, and social domains. Patients and family caregivers could benefit from a dyadic approach to address sexual wellbeing. [ABSTRACT FROM AUTHOR]