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.
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.
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.