Reimagining rights-based accountability: Community use of economic and social rights

This article explores the ways in which marginalised groups in Northern Ireland have employed and translated for practical use human rights standards, principles and mechanisms to campaign for the implementation of economic and social rights obligations. With the support of Participation and Practice of Rights, a regional nongovernmental organisation, marginalised groups have drawn upon human rights in their local context to campaign on issues related to mental health, housing, work and play. Based on case studies from four such campaigns, this article reviews the practical steps groups took to engage directly or indirectly with economic and social rights tools and mechanisms. The article reflects on the usefulness of these frameworks and mechanisms for achieving change in the case studies discussed, as well as the value of a human rights framework for empowering marginalised communities to make rights-based demands for change. It is argued that although the realisation of economic and social rights is limited in part by the lack of traditional enforcement mechanisms, community driven campaigns offer an opportunity for reimagining mechanisms for rights-based accountability.

Exploring the prevalence of and factors associated with pain: a cross-sectional study of community-dwelling people with dementia

Few pain studies have made community-dwelling people with dementia (PWD) their focus. The aim of this study was to determine the prevalence of pain among this patient population and to explore medication use. Moreover, we sought to investigate patient and caregiver variables associated with the presence of pain. Community-dwelling PWD and their caregivers were recruited between May 2009 and July 2012 from outpatient memory clinics in Northern Ireland to take part in a face-to-face structured interview with a researcher. Patients' cognitive status and presence of depression were established. A full medication history was taken. Both patients and caregivers were asked to rate patients' pain, at the time of the interview and on an average day, using a 7-point verbal descriptor scale. From the 206 patients who were eligible to take part, 75 patient-caregiver dyads participated in the study (participation rate = 36.4%). The majority of patients (92.0%) had dementia classed as mild or moderate. Pain was commonly reported among the sample, with 57.3% of patients and 70.7% of caregivers reporting patient pain on an average day. Significant differences were found between patients' and caregivers' reports of pain. Two-fifths of patients (40.0%) were prescribed analgesia. Antipsychotic, hypnotic and anxiolytic drug use was low, whereas antidepressant drugs were prescribed more commonly. Presence of pain was unaffected by dementia severity; however, the use of prescribed analgesic medication was a significant predictor of the presence of pain in these patients, whether reported by the patient or their caregiver 'right now' or 'on an average day' (P < 0.001). Patient and caregiver recruitment was challenging, and remains a barrier to research in this area in the future.

Impact of political violence, social trust, and depression on civic participation in Colombia

Civic participation is important for peacebuilding and democratic development; however, the role of mental health has been largely overlooked by policymakers aiming to stimulate engagement in civil society. This study investigated antecedents of civic participation in Colombia, a setting of protracted political conflict, using bootstrapped mediation in path analysis. Past exposure to violence, experience with community antisocial behavior, and perceived social trust were all significantly related to civic participation. In addition, depression mediated the impact of past exposure to political violence and perceived social trust, but not community antisocial behavior, on civic participation. In this context, findings challenged depictions of helpless victims and instead suggested that when facing greater risk (past violence exposure and community antisocial behavior), individuals responded in constructive ways, taking on agency in their communities. Social trust in one’s neighbors and community also facilitated deeper engagement in civic life. Relevant to the mediation test, interventions aiming to increase civic participation should take mental health into account. Limitations and possible future research are discussed.

Adjusting HIV Prevalence Estimates for Non-participation: an Application to Demographic Surveillance

Introduction: HIV testing is a cornerstone of efforts to combat the HIV epidemic, and testing conducted as part of surveillance provides invaluable data on the spread of infection and the effectiveness of campaigns to reduce the transmission of HIV. However, participation in HIV testing can be low, and if respondents systematically select not to be tested because they know or suspect they are HIV positive (and fear disclosure), standard approaches to deal with missing data will fail to remove selection bias. We implemented Heckman-type selection models, which can be used to adjust for missing data that are not missing at random, and established the extent of selection bias in a population-based HIV survey in an HIV hyperendemic community in rural South Africa.

Methods: We used data from a population-based HIV survey carried out in 2009 in rural KwaZulu-Natal, South Africa. In this survey, 5565 women (35%) and 2567 men (27%) provided blood for an HIV test. We accounted for missing data using interviewer identity as a selection variable which predicted consent to HIV testing but was unlikely to be independently associated with HIV status. Our approach involved using this selection variable to examine the HIV status of residents who would ordinarily refuse to test, except that they were allocated a persuasive interviewer. Our copula model allows for flexibility when modelling the dependence structure between HIV survey participation and HIV status.

Results: For women, our selection model generated an HIV prevalence estimate of 33% (95% CI 27–40) for all people eligible to consent to HIV testing in the survey. This estimate is higher than the estimate of 24% generated when only information from respondents who participated in testing is used in the analysis, and the estimate of 27% when imputation analysis is used to predict missing data on HIV status. For men, we found an HIV prevalence of 25% (95% CI 15–35) using the selection model, compared to 16% among those who participated in testing, and 18% estimated with imputation. We provide new confidence intervals that correct for the fact that the relationship between testing and HIV status is unknown and requires estimation.

Conclusions: We confirm the feasibility and value of adopting selection models to account for missing data in population-based HIV surveys and surveillance systems. Elements of survey design, such as interviewer identity, present the opportunity to adopt this approach in routine applications. Where non-participation is high, true confidence intervals are much wider than those generated by standard approaches to dealing with missing data suggest.

(Re)examining the relationship between children's subjective wellbeing and their perceptions of participation rights

In recent years wellbeing has been linked increasingly with children’s rights, often characterised as central to their realisation. Indeed it has been suggested that the two concepts are so intertwined that their pairing has become something of a mantra in the literature on childhood. This paper seeks to explore the nature of the relationship between wellbeing and participation rights, using a recently developed ‘rights-based’ measure of children’s participation in school and community, the Children’s Participation Rights Questionnaire (CPRQ), and an established measure of subjective wellbeing – KIDSCREEN-10. The data for the study came from the Kids’ Life and Times (KLT) which is an annual online survey of Primary 7 children carried out in Northern Ireland. In 2013 approximately 3,800 children (51% girls; 49% boys) from 212 schools participated in KLT. The findings showed a statistically significant positive correlation between children’s overall scores on the KIDSCREEN-10 subjective wellbeing measure and their perceptions that their participation rights are respected in school and community settings. Further, the results indicated that it is the social relations/autonomy questions on KIDSCREEN-10 which are most strongly related to children’s perceptions that their participation rights are respected. Exploration of the findings by gender showed that there were no significant differences in overall wellbeing; however girls had higher scores than boys on the social relations/autonomy domain of KIDSCREEN-10. Girls were also more positive than boys about their participation in school and community. In light of the findings from this study, it is suggested that what lies at the heart of the relationship between child wellbeing and children’s participation rights is the social/relational aspects of both participation and wellbeing.

The design and implementation of a study to investigate the effectiveness of community vs hospital eye service follow-up for patients with neovascular age-related macular degeneration with quiescent disease

Introduction
Standard treatment for neovascular age-related macular degeneration (nAMD) is intravitreal injections of anti-VEGF drugs. Following multiple injections, nAMD lesions often become quiescent but there is a high risk of reactivation, and regular review by hospital ophthalmologists is the norm. The present trial examines the feasibility of community optometrists making lesion reactivation decisions.

Methods
The Effectiveness of Community vs Hospital Eye Service (ECHoES) trial is a virtual trial; lesion reactivation decisions were made about vignettes that comprised clinical data, colour fundus photographs, and optical coherence tomograms displayed on a web-based platform. Participants were either hospital ophthalmologists or community optometrists. All participants were provided with webinar training on the disease, its management, and assessment of the retinal imaging outputs. In a balanced design, 96 participants each assessed 42 vignettes; a total of 288 vignettes were assessed seven times by each professional group.The primary outcome is a participant's judgement of lesion reactivation compared with a reference standard. Secondary outcomes are the frequency of sight threatening errors; judgements about specific lesion components; participant-rated confidence in their decisions about the primary outcome; cost effectiveness of follow-up by optometrists rather than ophthalmologists.

Discussion
This trial addresses an important question for the NHS, namely whether, with appropriate training, community optometrists can make retreatment decisions for patients with nAMD to the same standard as hospital ophthalmologists. The trial employed a novel approach as participation was entirely through a web-based application; the trial required very few resources compared with those that would have been needed for a conventional randomised controlled clinical trial.

Measuring children’s experience of their right to participate in school and community: a rights-based approach

This paper discusses the development of a children’s rights-based measure of participation and the findings from its use in a survey of 10 to 11 year old children (n= 3773). The measure, which was developed in collaboration with a group of children, had a high reliability (Cronbach’s alpha = .89). Findings suggest that children’s positive experience of their participation rights is higher in school than in community, and higher for girls compared to boys. It is argued that involving children in the ‘measurement’ of their own lives has the potential to generate more authentic data on children’s lived experiences.