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Closing the gap on employment rates: Success stories pave the way for policy works-in-progress

Vijayasingham L

Mult Scler, 2017 09;23(10):1430-1431.
PMID: 28299951 DOI: 10.1177/1352458517701315
Work right to right work: An automythology of chronic illness and work

Vijayasingham L

Chronic Illn, 2018 03;14(1):42-53.
PMID: 28441882 DOI: 10.1177/1742395317699450

Objectives Chronic illness is known to disrupt and redirect the usual course of work trajectories. This article aims to portray the longitudinal course of negotiating work after multiple sclerosis. Methods Using therapy and personal journals to reconstruct memories and experience, an autoethnography is produced and narrated within Campbell's "Hero's Journey" automythology framework. Results The narrative highlights the intrasubjectivity of illness meaning-the changing internal meaning-making and external behavior and decision-making dynamics. The journey of being inhibited to "Work Right", to "Looking for the Right" and ultimately, finding "Right Work" is charted; portrayed as a bittersweet maneuver to achieve work-illness equilibrium. Discussion This journey traverses a spectrum of negative coping-the exhibition of deviant work behaviors, disengagement and depression; to recalibration and renewal; culminating in living the "new normal", and finding moral and meaningful work engagements. Life trajectories with chronic illness are often skewed and redirected; but longitudinal narratives of normalization and coping also highlight the pursuits to secure and maintain a life of meaning and value.
Fulltext Reframing non-communicable diseases

Vijayasingham L, Allotey P

Lancet Glob Health, 2017 11;5(11):e1070.
PMID: 29025625 DOI: 10.1016/S2214-109X(17)30326-1
A call for more research and global collaboration in South-East Asia to address challenges of DMT access and MS management in the region

Vijayasingham L, Viswanathan S

Mult Scler, 2019 01;25(1):130-131.
PMID: 30132396 DOI: 10.1177/1352458518797290
Fulltext Employment of patients with multiple sclerosis: the influence of psychosocial-structural coping and context

Vijayasingham L, Mairami FF

Degener Neurol Neuromuscul Dis, 2018;8:15-24.
PMID: 30050385 DOI: 10.2147/DNND.S131729

Patients with multiple sclerosis tend to report higher levels of work difficulties and negative outcomes, such as voluntary and involuntary work termination and reduced work participation. In this article, we discuss the complex interactions of disease, personal coping strategies, and social and structural factors that contribute to their work experiences and outcomes. An overview of the coping strategies and actions that leverage personal and context-level factors and dynamics is also provided to support the overall goal of continued work in patients with MS.
Fulltext The gender responsiveness of social entrepreneurship in health - A review of initiatives by Ashoka fellows

Khalid S, Dixon S, Vijayasingham L

Soc Sci Med, 2022 Jan;293:114665.
PMID: 34954676 DOI: 10.1016/j.socscimed.2021.114665

There are vocal calls to act on the gender-related barriers and inequities in global health. Still, there are gaps in implementing programmes that address and counter the relevant dynamics. As an approach that focuses on social problems and public service delivery gaps, social entrepreneurship has the potential to be a closer health sector partner to tackle and transform the influence of gender in health to achieve health systems goals better. Nevertheless, social entrepreneurs' engagement and impact on gender and health remain understudied. Using the Ashoka Fellows database as a sampling frame in November 2020 (n = 3352, health n = 129), we identified and reviewed the work of 21 organizations that implemented gender-responsive health-related programmes between 2000 and 2020. We applied the UNU-IIGH 6-I Analytic Framework to review the gender issues, interventions, included populations, investments, implementation, and impact in each organization. We found that a low proportion of fellows engage in gender-responsive health programming (<1%). Many organizations operate in low-and middle-income countries (16/21). The gender-responsive programmes include established health sector practices, to address gendered-cultural dynamics and deliver people-centred resources and services. Interestingly, most organizations self-identify as NGOs and rely on traditional grant funding. Fewer organizations (6/21) adopt market-based and income-generating solutions - a missed opportunity to actualise the potential of social entrepreneurship as an innovative health financing approach. There were few publicly available impact evaluations-a gap in practice established in social entrepreneurship. All organizations implemented programmes at community levels, with some cross-sectoral, structural, and policy-level initiatives. Most focused on sexual and reproductive health and gender-based violence for predominantly populations of women and girls. Closer partnerships between social entrepreneurs and gender experts in the health sector can provide reciprocally beneficial solutions for cross-sectorally and community designed innovations, health financing, evidence generation and impact tracking that improve the gender-responsiveness of health programmes, policies, and systems.
Fulltext Employment based health financing does not support gender equity in universal health coverage

Vijayasingham L, Govender V, Witter S, Remme M

BMJ, 2020 10 27;371:m3384.
PMID: 33109510 DOI: 10.1136/bmj.m3384
Ethics of care and selective organisational caregiving by private employers for employees with chronic illness in a middle-income country

Vijayasingham L, Jogulu U, Allotey P

Soc Sci Med, 2021 01;269:113608.
PMID: 33360218 DOI: 10.1016/j.socscimed.2020.113608

For people with chronic illnesses in low-and-middle-income countries, access to enabling resources that contribute to health, economic and social resilience such as continued employment, often fall outside the health sector's remit or delivery of national structural protection. In the absence of sufficient laws and policies that mitigate discrimination and enhance reasonable work modifications, private employers have a high degree of agency and discretion in how they hire, manage, or terminate employees with chronic illnesses (ECI). There is a scarcity of research on how employers make decisions under these conditions. Using a constructivist grounded theory approach, we interviewed and analysed data from 30 human resource (HR) professionals and decision-makers within private organisations in Klang Valley, Malaysia (June 2015-September 2016). In this paper, we use 'ethics of care' as an analytic, and moral lens to present HR's decision-making rationales in caring for and managing ECI. Respondents described the positive influence of international practices, including through parent company policies, as a reference for best practice. While overt bias and discriminatory perceptions were predictably described, participants also discussed care as relational organisational culture, and strategy, albeit selectively. Apart from illness factors such as duration and severity, descriptions of 'selective caregiving' included considerations of an employee's duration in organisations, the perceived value of the employee to employers, organisation size, ethos, resources and capabilities, and how organisations managed the uncertainty of illness futures as a potential risk to organisation outcomes. Selective caregiving can contribute to social, economic and health inequalities in populations with chronic illness. Nevertheless, global health actors can use the problems identified by participants, as entry points to engage more closely with employers and the broader private and commercial sectors in LMICs, to facilitate more inclusive care, and care-based intersectoral work to address the social and economic determinants of health.
Chronic illness and sustainable careers: How individuals with multiple sclerosis negotiate work transitions in a middle-income country

Vijayasingham L, Jogulu U, Allotey P

Soc Sci Med, 2020 01;245:112699.
PMID: 31785425 DOI: 10.1016/j.socscimed.2019.112699

Reports of work change and transitions are common amongst individuals with chronic illnesses such as multiple sclerosis (MS). However, there is little research on the lived experience of these work transitions. The scarcity of this research is particularly evident within low-and-middle-income countries, where protection laws and resources such as anti-discrimination laws and reasonable work modifications may not exist or be well enforced. In this paper, we explore how and why individuals with MS seek and achieve work transitions in the structural context of Malaysia. We interviewed ten working individuals with MS (July-december 2015) using a joint hermeneutic phenomenology and constructivist grounded theory approach. Using a broad conceptual lens of 'sustainable careers', we examine their careers as a series of experiences, decisions, and events, paying attention to the influences of context, time, their personal levels of agency and sense of meaning. Participants described work transitions as early as within the first year of diagnosis, that were prompted by voluntary, involuntary and semi-voluntary reasons. Key aspects of the process of seeking new roles included an exploration of alternative roles and paths, and then acquiring, trialing/adapting and remaining engaged in their new roles. Participants identified the perception and experience of 'being unemployable', based on how their diagnosis and short-term symptoms were responded to by employers. Nevertheless, participants used various strategies and career resources to obtain and maintain meaningful work roles. However, success in obtaining or maintaining new roles were not equally achieved. This research draws attention to the cumulative economic disadvantage of a chronic illness diagnosis, even at milder and episodic stages. Furthermore, it reiterates the need for cohesive structural protection in low-and-middle-income countries to facilitate a more equal ability to remain economically resilient and capable of engaging in meaningful long-term careers when living with a chronic illness.
Fulltext Work Change in Multiple Sclerosis as Motivated by the Pursuit of Illness-Work-Life Balance: A Qualitative Study

Vijayasingham L, Jogulu U, Allotey P

Mult Scler Int, 2017;2017:8010912.
PMID: 29348937 DOI: 10.1155/2017/8010912

Individuals with multiple sclerosis have a tendency to make early decisions for work change, even in reversible, episodic, or mild disease stages. To better understand how a multiple sclerosis (MS) diagnosis influences perceptions of work and motivations for work changes, we conducted a hermeneutic phenomenology study to explore the work lives of ten individuals with MS in Malaysia. The interpretive analysis and cumulative narratives depict an overarching change in their concept of ideal work and life aspirations and how participants make preemptive work changes to manage illness-work-life futures in subjectively meaningful ways. Discussions on their integrated pursuit of finding dynamic and subjective illness-work-life balance include reconciling the problem of hard work and stress on disease activity and progress, making positive lifestyle changes as health management behaviour, and the motivational influence of their own life and family roles: the consideration of their spouses, parents, and children. At an action level, work change was seen as moral and necessary for the management of illness futures. Our findings contribute insights on how individual perceptions and holistic life management decisions contribute to on-going and disrupted work trajectories, which can inform practice and policy on early interventions to support continued employment.
Fulltext Making pharmaceutical research and regulation work for women

Ravindran TS, Teerawattananon Y, Tannenbaum C, Vijayasingham L

BMJ, 2020 10 27;371:m3808.
PMID: 33109511 DOI: 10.1136/bmj.m3808
Fulltext Restrictive migration policies in low-income and middle-income countries

Vijayasingham L, Rhule E, Asgari-Jirhandeh N, Allotey P

Lancet Glob Health, 2019 07;7(7):e843-e844.
PMID: 31200884 DOI: 10.1016/S2214-109X(19)30196-2
Fulltext Sex-disaggregated data in COVID-19 vaccine trials

Vijayasingham L, Bischof E, Wolfe J, Gender and COVID-19 Research Agenda-setting Initiative

Lancet, 2021 Mar 13;397(10278):966-967.
PMID: 33684351 DOI: 10.1016/S0140-6736(21)00384-6
Fulltext Resolving sex and gender bias in COVID-19 vaccines R&D and beyond

Vijayasingham L, Heidari S, Munro J, Omer S, MacDonald N

Hum Vaccin Immunother, 2022 Dec 31;18(1):2035142.
PMID: 35143380 DOI: 10.1080/21645515.2022.2035142

The influence of sex and gender in immune response and vaccine outcomes is established in many disease areas, including in COVID-19. Yet, there are notable gaps in the consideration of sex and gender in the analysis and reporting of COVID-19 vaccines clinical trial data. The push for stronger sex and gender integration in vaccines science should be championed by all researchers and stakeholders across the R&D and access ecosystem - not just gender experts. This requires joint action on the tactical framing of customized value propositions (based on stakeholder motivations), the stronger enforcement of existing regulation, tools, and commitments, and aligning the overall agenda to parallel calls on intersectionality, equity diversity and inclusion.
Fulltext Self care interventions for sexual and reproductive health and rights: costs, benefits, and financing

Remme M, Narasimhan M, Wilson D, Ali M, Vijayasingham L, Ghani F, et al.

BMJ, 2019 Apr 01;365:l1228.
PMID: 30936210 DOI: 10.1136/bmj.l1228

Michelle Remme and colleagues argue that if costs to users are considered and their financing is right, self care interventions for sexual and reproductive health can improve equity and efficiency
Fulltext Financing intersectoral action for health: a systematic review of co-financing models

McGuire F, Vijayasingham L, Vassall A, Small R, Webb D, Guthrie T, et al.

Global Health, 2019 12 18;15(1):86.
PMID: 31849335 DOI: 10.1186/s12992-019-0513-7

BACKGROUND: Addressing the social and other non-biological determinants of health largely depends on policies and programmes implemented outside the health sector. While there is growing evidence on the effectiveness of interventions that tackle these upstream determinants, the health sector does not typically prioritise them. From a health perspective, they may not be cost-effective because their non-health outcomes tend to be ignored. Non-health sectors may, in turn, undervalue interventions with important co-benefits for population health, given their focus on their own sectoral objectives. The societal value of win-win interventions with impacts on multiple development goals may, therefore, be under-valued and under-resourced, as a result of siloed resource allocation mechanisms. Pooling budgets across sectors could ensure the total multi-sectoral value of these interventions is captured, and sectors' shared goals are achieved more efficiently. Under such a co-financing approach, the cost of interventions with multi-sectoral outcomes would be shared by benefiting sectors, stimulating mutually beneficial cross-sectoral investments. Leveraging funding in other sectors could off-set flat-lining global development assistance for health and optimise public spending. Although there have been experiments with such cross-sectoral co-financing in several settings, there has been limited analysis to examine these models, their performance and their institutional feasibility.
AIM: This study aimed to identify and characterise cross-sectoral co-financing models, their operational modalities, effectiveness, and institutional enablers and barriers.
METHODS: We conducted a systematic review of peer-reviewed and grey literature, following PRISMA guidelines. Studies were included if data was provided on interventions funded across two or more sectors, or multiple budgets. Extracted data were categorised and qualitatively coded.
RESULTS: Of 2751 publications screened, 81 cases of co-financing were identified. Most were from high-income countries (93%), but six innovative models were found in Uganda, Brazil, El Salvador, Mozambique, Zambia, and Kenya that also included non-public and international payers. The highest number of cases involved the health (93%), social care (64%) and education (22%) sectors. Co-financing models were most often implemented with the intention of integrating services across sectors for defined target populations, although models were also found aimed at health promotion activities outside the health sector and cross-sectoral financial rewards. Interventions were either implemented and governed by a single sector or delivered in an integrated manner with cross-sectoral accountability. Resource constraints and political relevance emerged as key enablers of co-financing, while lack of clarity around the roles of different sectoral players and the objectives of the pooling were found to be barriers to success. Although rigorous impact or economic evaluations were scarce, positive process measures were frequently reported with some evidence suggesting co-financing contributed to improved outcomes.
CONCLUSION: Co-financing remains in an exploratory phase, with diverse models having been implemented across sectors and settings. By incentivising intersectoral action on structural inequities and barriers to health interventions, such a novel financing mechanism could contribute to more effective engagement of non-health sectors; to efficiency gains in the financing of universal health coverage; and to simultaneously achieving health and other well-being related sustainable development goals.
Fulltext A shared agenda for gender and COVID-19 research: priorities based on broadening engagement in science

George AS, Lopes CA, Vijayasingham L, Mothupi MC, Musizvingoza R, Mishra G, et al.

BMJ Glob Health, 2023 May;8(5).
PMID: 37217235 DOI: 10.1136/bmjgh-2022-011315

While the acute and collective crisis from the pandemic is over, an estimated 2.5 million people died from COVID-19 in 2022, tens of millions suffer from long COVID and national economies still reel from multiple deprivations exacerbated by the pandemic. Sex and gender biases deeply mark these evolving experiences of COVID-19, impacting the quality of science and effectiveness of the responses deployed. To galvanise change by strengthening evidence-informed inclusion of sex and gender in COVID-19 practice, we led a virtual collaboration to articulate and prioritise gender and COVID-19 research needs. In addition to standard prioritisation surveys, feminist principles mindful of intersectional power dynamics underpinned how we reviewed research gaps, framed research questions and discussed emergent findings. The collaborative research agenda-setting exercise engaged over 900 participants primarily from low/middle-income countries in varied activities. The top 21 research questions included the importance of the needs of pregnant and lactating women and information systems that enable sex-disaggregated analysis. Gender and intersectional aspects to improving vaccine uptake, access to health services, measures against gender-based violence and integrating gender in health systems were also prioritised. These priorities are shaped by more inclusive ways of working, which are critical for global health as it faces further uncertainties in the aftermath of COVID-19. It remains imperative to address the basics in gender and health (sex-disaggregated data and sex-specific needs) and also advance transformational goals to advance gender justice across health and social policies, including those related to global research.
Multi-actor system dynamics in access to disease-modifying treatments for multiple sclerosis in Southeast Asia: A regional survey and suggestions for improvement

Viswanathan S, Vijayasingham L, Laurson-Doube J, Quek AML, Tan K, Yeo T, et al.

Mult Scler Relat Disord, 2024 Mar 18;85:105555.
PMID: 38547547 DOI: 10.1016/j.msard.2024.105555

BACKGROUND: Despite the global availability of multiple sclerosis (MS) treatments, accessing and financing them in Southeast Asia (SEA) remains a challenge. This descriptive survey-based study aimed to describe the current state of MS treatment access and local access dynamics within this region.
METHODS: The survey questionnaire, comprising of 15 closed-ended and five open-ended questions, was developed by three neurologists with expertise in MS and routine MS patient management, or had training in neuroimmunology. Questionnaire development was guided by the recent Atlas of MS and in alignment with the Access to Treatment framework, focusing on MS diagnosis and treatment issues in SEA. Fifteen neurologists experienced in managing MS across the region were identified as key informants for this study.
RESULTS: All fifteen neurologists participated in the survey via email and videoconferencing between January 2020 and February 2023, which included the following countries: Brunei, Cambodia, Indonesia, Malaysia, Myanmar, Lao PDR, Philippines, Singapore, Thailand, Timor-Leste, and Vietnam. All had at least five years of experience in managing MS patients and six had previously completed a neuroimmunology fellowship programme. SEA countries showed disparities in healthcare financing, availability of neurologists, MS treatments, and investigative tools. Access to MS disease-modifying treatments (DMTs) is hindered by high cost, lack of MS specialists, and weak advocacy efforts. On-label DMTs are not listed as essential medicines regionally except for interferon beta1a and teriflunomide in Malaysia. On-label monoclonals are available only in Malaysia, Singapore, and Thailand. Generic on-label DMTs are unavailable due to lack of distributorship and expertise in using them. Off-label DMTs (azathioprine, methotrexate, and rituximab) predominate in most SEA countries. Other challenges include limited access to investigations, education, and knowledge about DMTs among general neurologists, and absence of registries and MS societies. Patient champions, communities, and MS organisations have limited influence on local governments and pharmaceutical companies. Despite its increasing prevalence, there is a lack of concerted priority setting due to MS being perceived as a rare, non-communicable disease.
CONCLUSION: This study highlights the distinct dynamics, challenges, and research gaps within this region, and provides suggestions to improve MS diagnosis, education, and medicine access.

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