Marie Stopes Society

This study examines the impact of leprosy on those affected by leprosy in Sindh, Pakistan, exploring their care-seeking behavior, treatment experiences, well-being, stigma and coping mechanisms. By highlighting the lived experiences of persons affected by leprosy (PAL), this study aims to inform strategies that address not only the biological aspects of leprosy, but also the social and psychological challenges faced by this marginalized population. Fifteen in-depth interviews were conducted with persons affected by leprosy from Sindh, Pakistan. A combined inductive and deductive thematic analysis approach was applied inspired by the “conceptual framework of the bio-psycho-social impact and coping mechanisms of patients” by Han et al. Participants reported delays in diagnosis of up to twenty years, significantly influenced by limited awareness and socio-economic barriers. These delays increased the risk of physical disability and worsened mental health problems such as depression and anxiety, largely fueled by stigma and misinformation. While both genders experienced stigma, women were more likely to express their mental health problems, highlighting gender differences in discussing such issues. Peer support and community storytelling emerged as effective strategies to mitigate stigma, while the role of religious beliefs shaped both societal perceptions and personal coping mechanisms. The findings highlight the need for comprehensive, culturally sensitive interventions that address the bio-psycho-social challenges faced by PAL. Implementing people-centered strategies that use storytelling, community engagement and digital health tools are essential to reduce delays in diagnosis and improve the overall well-being of PAL. Further research is needed to refine these interventions and ensure that they are aligned with the needs and beliefs of those affected by leprosy.

Leprosy elimination has recently re-entered the global health sphere, with the World Health Organisation's (WHO) "Towards zero leprosy" strategy (2021-2030). Previously, its elimination had been defined as a prevalence of less than 1 case per 10,000, which was achieved on a global scale in 2000, leading to a large withdrawal of resources from leprosy control and to neglect on both global and national scales. Despite this, leprosy continued to spread and affect hundreds of thousands of people annually. The study explores the barriers to leprosy elimination in Bolivia, using a phenomenological approach, to discover the perceptions and experiences of leprosy patients and medical professionals regarding leprosy in Bolivia. It also explores the role of active case finding (ACF) for leprosy elimination in Bolivia. In-depth semi-structured interviews were conducted in Spanish, mainly at Jorochito Dermatological Hospital, the national referral centre for leprosy in Bolivia. Barriers to leprosy elimination in Bolivia are present at provider, patient, governmental, societal and community levels. These include poor health financing, untrained workforce, poor treatment adherence, centralised organisation of leprosy diagnosis and treatment and health illiteracy. The barriers to leprosy elimination in Bolivia are complex, interconnected and embedded in Bolivian society. Leprosy elimination must be given priority on global and national scales to increase funding and importance, to continue ACF activities, and to promote national solutions for sustainable leprosy control.

Leprosy, a neglected tropical disease, remains a major global health concern. If left untreated, it can lead to permanent disabilities and severe social stigma, profoundly impacting the well-being of those affected and their families. Leprosy is a public health concern in Sierra Leone, affecting hundreds of people each year. A significant number of individuals are already living with disabilities at the time of diagnosis, indicating delays in detection and treatment. These delays contribute to a vicious cycle of poverty, social exclusion, and long-term health complications. This study employed a qualitative approach to explore healthcare-seeking behaviors among people affected by leprosy in Sierra Leone's Western Area. Eighteen semi-structured interviews were conducted with individuals affected by leprosy, traditional healers, and community health workers in the Western Area of Sierra Leone in May and June 2024. An inductive thematic analysis was used to identify key patterns and factors influencing healthcare-seeking decisions. This methodology provided an in-depth understanding of the sociocultural and systemic barriers affecting early diagnosis and treatment. The study found that healthcare-seeking behavior is shaped by factors at the individual, community and healthcare system levels. Individually, misconceptions about leprosy, stigmatization and financial hardship delay care. Social attitudes in communities reinforce stigmatization and isolation. At the healthcare system level, poor access, limited services, and economic motives hinder treatment. These factors, compounded by widespread poverty, create significant obstacles to timely diagnosis and care. The complex interplay of individual, societal, and healthcare-related factors underscores the need for a multi-faceted approach to improving leprosy care in Sierra Leone. Multi-dimensional strategies involving people affected, traditional healers, healthcare workers, community leaders and public health policymakers are needed to address the factors contributing to diagnostic delays. Strengthening community awareness, integrating traditional healing practices with biomedical medicine, and enhancing healthcare accessibility and affordability are critical to ensuring early detection and reducing the burden of leprosy in Sierra Leone.

Leprosy is an infectious neglected tropical disease that can result in chronic immune mediated nerve damage. When this involves the facial nerve, this can lead to lagophthalmos, with the later stages requiring surgical correction. If untreated lagophthalmos can cause keratopathies leading to visual impairment and eventual blindness. However, to date no paper has systematically reviewed the surgical management of lagophthalmos in those affected by leprosy. A systematic review was conducted on the 16/11/2024 with data from PubMed, Infolep, Web of Sciences Core Collection and Medline ALL. Data extraction and analysis followed PRISMA guidelines. Included were English-language studies on the outcomes of surgical procedures for the surgical management of lagophthalmos, regardless the year of publication. The 12 papers identified contained data from seven countries. The majority of papers studied Temporalis Muscle transfer. Gillies technique or modifications of this technique were reported in five papers. Three papers reported modifications of Johnson's method of temporalis tendon transfer. One paper reported TMT using a silicone sling. Patients also received TMT using the Brown-McDonnell and the McCord-Cordner techniques. Lagophthalmos was also corrected using gold or steel weight implant techniques. One paper each studied lateral tarsal strip, modified tarsorrhaphy and scapha graft. Treatment of lagophthalmos is vital to preserve vision in those affected by leprosy, however, it is important to take into consideration the practical advantages of the five broad techniques identified by this review. Factors such as the type of anaesthesia, level of expertise, success rate, incidence and risk of complications, and longevity and stability of the results, are vital to consider when conducting these surgical procedures in reduced resource settings. Therefore, operations which are more cost effective, show a reduced complication rate and yield better long-term results without complicated follow-up are more likely to be adopted in lower resource settings.

The authors report findings from an 11-month research study where disabled adults created digital stories about life-stage transitions related to employment, post-secondary, and community living. While results about transitions have been published elsewhere, this article focuses on the online digital storytelling process as experienced by disabled adults. It begins with a brief description of crip theory and its relationship to disability. Next is an overview of the research design: a two-phased process where 13 post-secondary disabled youth were trained as digital storytelling peer-facilitators, and subsequently co-facilitated a series of digital story workshops over 8 months involving 34 disabled participants. Peer-facilitators and participants completed pre- and post-workshop surveys. Responses were analyzed guided by crip theory and content analysis. The second half of the article reports on survey findings which indicated several themes: disability pride, centering disability perspectives, the importance of crip time, and the need to consider community connection. It ends with a discussion and considerations in designing and replicating accessible online digital storytelling workshops to remove ableist barriers, amplify community, and ultimately celebrate difference.

The quality of contraceptive counseling that women receive from their provider can influence their future contraceptive continuation. We examined (1) whether the quality of contraceptive service provision could be measured in a consistent way by using existing tools from 2 large-scale social franchises, and (2) whether facility quality measures based on these tools were consistently associated with contraceptive discontinuation. We linked existing, routinely collected facility audit data from social franchise clinics in Pakistan and Uganda with client data. Clients were women aged 15-49 who initiated a modern, reversible contraceptive method from a sampled clinic. Consented participants completed an exit interview and were contacted 3, 6, and 12 months later. We collapsed indicators into quality domains using theory-based categorization, created summative quality domain scores, and used Cox proportional hazards models to estimate the relationship between these quality domains and discontinuation while in need of contraception. The 12-month all-modern method discontinuation rate was 12.5% among the 813 enrolled women in Pakistan and 5.1% among the 1,185 women in Uganda. We did not observe similar associations between facility-level quality measures and discontinuation across these 2 settings. In Pakistan, an increase in the structural privacy domain was associated with a 60% lower risk of discontinuation, adjusting for age and baseline method (P<.001). In Uganda, an increase in the management support domain was associated with a 33% reduction in discontinuation risk, controlling for age and baseline method (P=.005). We were not able to leverage existing, widely used quality measurement tools to create quality domains that were consistently associated with discontinuation in 2 study settings. Given the importance of contraceptive service quality and recent advances in indicator standardization in other areas, we recommend further effort to harmonize and simplify measurement tools to measure and improve contraceptive quality of care for all.

BackgroundLong-acting reversible contraceptives, such as the intrauterine device (IUD), remain underutilised in Pakistan with high discontinuation rates. Based on a 24-month prospective client follow-up (nested within a larger quasi-experimental study), this paper presents the comparison of two intervention models, one using private mid-level providers branded as “Suraj” and the other using community midwives (CMWs) of Maternal Newborn and Child Health Programme, for method continuation among IUD users. Moreover, determinants of IUD continuation and the reasons for discontinuation, and switching behaviour were studied within each arm.MethodsA total of 1,163 IUD users, 824 from Suraj and 339 from the CMW model, were enrolled in this 24-month prospective client follow-up. Participants were followed-up by female community mobilisers physically every second month to ascertain continued IUD usage and to collect information on associated factors, switching behaviour, reasons for discontinuation, and pregnancy occurrence. The probabilities of IUD continuation and the risk factors for discontinuation were estimated by life table analysis and Cox proportional-hazard techniques, respectively.ResultsThe cumulative probabilities of IUD continuation at 24 months in Suraj and CMW models were 82% and 80%, respectively. The difference between the two intervention areas was not significant. The probability distributions of IUD continuation were also similar in both interventions (Log rank test: χ2 = 0.06, df = 1, P = 0.81; Breslow test: χ2 = 0.6, df = 1, P = 0.44). Health concerns (Suraj = 57.1%, CMW = 38.7%) and pregnancy desire (Suraj = 29.3%, CMW = 40.3%) were reported as the most prominent reasons for IUD discontinuation in both intervention arms. IUD discontinuation was significantly associated with place of residence in Suraj and with age (15–25 years) in the CMW model.ConclusionCMWs and private providers are equally capable of providing quality IUD services and ensuring higher method continuation. Pakistan’s National Maternal Newborn and Child Health programme should consider training CMWs and providing IUDs through them. Moreover, private sector mid-level providers could be engaged in promoting the use of IUDs.

IntroductionRapid population growth, stagnant contraceptive prevalence, and high unmet need for family planning present significant challenges for meeting Pakistan’s national and international development goals. Although health behaviors are shaped by multiple social and environmental factors, research on contraceptive uptake in Pakistan has focused on individual and household determinants, and little attention has been given to community characteristics that may affect access to services and reproductive behavior.MethodsIndividual and community determinants of contraceptive use were identified using multivariable multilevel logistic regression to analyze data from a 2014 cross-sectional survey of 6,200 mothers in 503 communities in Sindh, Pakistan.ResultsOnly 27% of women who had given birth in the two years before the study reported using contraceptives. After adjusting for individual and community characteristics, there was no difference in the odds of contraceptive use between urban and rural women. Women who had delivered at a health facility had 1.4 times higher odds of contraceptive use than women who delivered at home. Those who received information about birth spacing from a doctor or relatives/friends had 1.81 and 1.38 times higher odds of contraceptive use, respectively, than those who did not. Living in a community where a higher proportion of women received quality antenatal care and where discussion of birth spacing was more common was significantly associated with contraceptive use. Community-wide poverty lowered contraceptive use.ConclusionsQuality of care at the community level has strong effects on contraceptive use, independent of the characteristics of individual households or women. These findings suggest that powerful gains in contraceptive use may be realized by improving the quality of antenatal care in Pakistan. Community health workers should focus on generating discussion of birth spacing in the community. Outreach efforts should target communities where the demand for contraception appears to be depressed due to high levels of poverty.

Hydrogen liquefaction systems have been the subject of intense investigations for many years. Some established gas liquefaction systems, such as the precooled Linde-Hampson systems, are not used for hydrogen liquefaction in part because of their relatively low efficiencies. Recently, more promising systems employing the modified Collins cycle have been introduced. This paper reports on second law analyses of a hydrogen liquefier operating on the modified Collins cycle. Two different modifications employing the cycle in question were attempted: (1) a helium-refrigerated hydrogen liquefaction system; and (2) a hydrogen-refrigerated hydrogen liquefaction system. Analyses were carried out in order to identify potential areas of development and efficiency improvement. A computer code capable of computing system and component efficiencies; exergy losses; and optimum number and operating conditions of compressors, expanders, aftercoolers, intercoolers and Joule-Thomson valves was developed. Evaluation of the thermodynamic and transport properties of hydrogen at different temperature levels was achieved by employing a hydrogen property code developed by researchers at the National Bureau of Standards (currently NIST). A parametric analysis was carried out and optimal decision rules pertaining to system component selection and design were reached. Economic analyses were also reported for both systems and indicated that the helium-refrigerated hydrogen liquefier is more economically feasible than the hydrogen-refrigerated hydrogen liquefier.