Characteristics of included studies
Nine studies were included in this review that employed various qualitative approaches. The studies took place in the United Kingdom (n = 1), Northeast India (n = 1), United States of America (n = 1), Ireland (n = 2), Canada (n = 3), and Australia (n = 1) between 2011 and 2022. The qualitative methods varied across studies and utilized a variety of methodological approaches: Four studies used ethnography and secondary analysis of critical ethnographic data; three studies were focus groups/group interview studies; one a literature review; and two studies each used storytelling and reflective narrative approaches. The central inclusion criteria for the literature in this review is the mention of work-related experiences of grief and/or bereavement. All included studies described worker grief and/or bereavement as work-related distress and broadly framed as emotional reactions to distress at work. Table 2 includes a summary of included studies.
Table 2
Characteristics of included studies
| Study | Country | Population | Study design | Aim | Key Findings |
| Lakeman, 2011 | Dublin, Ireland | Homeless sector workers who had experienced to the death of a service user (n = 16) | Qualitative Modified grounded theory, comparative analysis, theoretical sampling, interviews | Investigate workers' responses to service user deaths | Coping with death depends on how it's encountered, marking the death, and recognizing / responding to vulnerability |
| Roche et al., 2013 | Australia | Indigenous AOD and general health workers (n = 121) | Qualitative Focus groups, thematic analysis, purposeful sampling | Explore Indigenous worker well-being, stress, burnout | Main stressors are excessive workload, proximity to communities, loss/grief, lack of recognition, inadequate rewards, stigma/racism, and Indigenous working ways. |
| Stajduhar et al., 2020 | Victoria, B.C., Canada | Inner city workers (ICWs) (n = 16) and key informants (e.g., executive directors and managers in health and social services) (n = 15) | Qualitative Secondary thematic analysis of observational and interview data from larger critical ethnographic study | Explore ICWs' experiences in providing care to dying clients, integrating a palliative approach, and improve access | Palliative care in inner city often provided by ICWs. Key themes: approaches, awareness, training, workplace policies, grief, bereavement, and supports. |
| Kennedy et al., 2019 | Vancouver, B.C., Canada | Peers working in Overdose Prevention Sites (OPS) (n = 72) | Qualitative 185 h observational fieldwork at OPS 72 in-depth qual interviews, thematic data analysis | Characterize peer involvement in OPS programming | OPS operations rely on peer involvement which improves engagement and promotes harm reduction. However, peers often face trauma, burnout, and grief. |
| Kanno & Giddings, 2017 | United States | Mental health professionals and trauma workers, social workers | Qualitative Review of literature worldwide from (1974– 2015) | Review traumatic stress and discuss prevention strategies | Understanding traumatic stress nature is critical. Traumatic stress can significantly impair workers and should be addressed with prevention and remediation strategies. |
| Dutta et al., 2022 | Northeast India | Miya community workers | Qualitative Storytelling, critical resilience praxis, decolonial theories | Name workers’ resistance efforts, suggest implications for decolonial liberatory praxis, and critique "inclusion" | Identified reclaiming theory, moving beyond "inclusion", resisting commodification, and the centrality of community in resistance. |
| Watson, 2016 | United Kingdom | Outreach/peer support worker in mental health and recovery setting (n = 1) | Qualitative Reflective narrative approach | Describe a day in the life of a peer support worker in an NHS trust to reflect on recovery-focused practices and peer support | Reflection related to boundaries, grieving, and the experience of endings within peer support. |
| Giesbrecht et al., 2023 | Canada | Community worker action team (n = 18); Palliative care, social care, and housing support workers (n = 48) | Qualitative Community-based participatory action research, Focus groups (n = 5) evaluative interviews (n = 13), observational field notes (n = 34) | Explore workers' experiences of grief, identify support strategies | Identified workers grieving as “de-facto” family, complex layers of compounded grief, fear of confronting grief. |
| Tobin et al., 2020 | Ireland | Traveller community health workers (n = 10) | Qualitative 3 semi structured group interviews, Interpretative phenomenological analysis (IPA). | Explore grief experiences in Traveller community | Identified extensive, profound, and enduring loss; difficulties in coping with suicide deaths; silence and strategies for managing tragic deaths disclosure. |
The included studies were organized by three overarching themes relevant to the research aims of the current review: 1) working in contexts of inequities; 2) distress and its attributing factors; and 3) support needs and strategies. Each theme contained three sub-themes, outlined in Table 3.
Table 3
Summary of interpreted themes and sub-themes.
| Overarching themes | Sub-themes |
| Working in contexts of inequities | Settings and roles Client context and inequity Role ambiguity |
| Distress and its attributing factors | Psychological responses and negative emotions Bearing witness Compounding and complicated grief |
| Support needs and strategies | Self-care, boundaries and meaning making Working conditions, policies, and procedures Collective support |
Working in contexts of inequities
The population of focus in this review was paraprofessional, social and community service workers who are employed by non-profit organizations and government social service agencies to support people experiencing social disadvantages. Although the occupational titles, roles, and responsibilities differed across the worker groups and sectors, three sub-themes related to work-related distress were found: 1) settings and roles; 2) client context and inequity; and 3) role ambiguity.
Settings and roles
The included studies describe experiences of distress among those providing services to people who “fall through the cracks of fractured housing, health, and social care systems” (10) (p.673) in various (predominantly urban) settings in the UK, India, Canada, Ireland, and Australia. Workers encompassed a range of job descriptions including mental health peer support workers, Indigenous alcohol and other drug (AOD) workers, overdose prevention service (OPS) peer workers, trauma and mental health workers, inner city workers (ICWs), traveller community health workers, front-line workers in the homeless sector, and Miya community workers.
While the included research describes workplace environments that are generally consistent across sectors and cultures, there are strong variations in how worker distress is defined and contextualized. Several studies characterize distressing work environments through their proximity to service user trauma and to the psychological impacts of “assisting traumatized populations" (30) (p.333). Others cite the tension produced when workers in settings ostensibly designed to “improve access to care and reduce health inequities” (20) (p.65) witness the “poorer health status and lower life expectancy” (31) (p.131) that results from social or structural exclusion as the primary mechanism of worker distress. Workplace exposure to death is identified in the majority of included studies as an important contributor to worker distress, but several studies state that it is in fact the repeated encountering of sudden, unexpected, often preventable death—especially when it “takes place against a backdrop of expectation that harm may befall service users” (32) (p.931) that leads to worker distress.
The majority of included studies also note that the roles and responsibilities of work that have been previously restricted to health professionals (20) (p.64) are now often redistributed to peer and inner-city workers. These workers’ distress stems from the fact that they are “less likely to share clear professional identities and role demarcations as people who work in hospitals or emergency services” (32) (p.926), yet they face more “risk and uncertainty” (32) (p.927) in low-threshold settings. Study participants describe their work as “a world of unmet needs, multiple losses, and persistent grief” (10) (p.674) characterized by low pay, heavy workloads, lack of formal recognition and support, extensive demands and expectations, stigma, racism, and a lack of culturally safe ways of working (33) (p.533).
Client context and inequity
All the studies included in this review describe work that supports those who experience social and structural inequities. Service users are likely live in poverty or socio-economic disadvantage, are unhoused or precariously housed, experience trauma and violence, have mental health or substance use concerns, have interactions with the criminal justice system, and experience racism, discrimination, and cultural dislocation.
Several researchers articulate these inequities through identification and description of service user characteristics such as Lakeman’s (32) statement: “Homeless people tend to have high rates of alcohol and drug dependence and associated problems, communicable diseases, psychiatric disorders, and exposure to violence and trauma” (32) (p.926). Others describe inequity as the product of structural or systemic factors. For example, Dutta et al., state that “women at the margins of the nation state experience violence generated by structures, institutions, and histories that make their experiences irreducible to discrete categories (e.g., livelihood, health, domestic violence)” (34) (p.362).
Among the systemic inequities experienced by those who access support is the inequity of access to services. Stajduhar et al., identify that the population served in these settings – those experiences homelessness, poverty, racism, criminalization, and stigma – are more likely to experience barriers in accessing mainstream health care and the “disproportionate burden of ill-health and social suffering” (10) (p. 670). Many authors report that workers may also experience some of the same spaces of inequity as service users, compounding the effects of inequity in their own lives. This means, for example, that inner-city workers can often find themselves in “proximity to trauma whether it is embedded in the lives and stories of those they accompany, or their own inherited legacies of intergenerational trauma” (34) (p.360).
Role ambiguity
The majority of included studies report role ambiguity among workers who are “less likely to share clear professional identities and role demarcations” (32) (p.926) compared to their professional counterparts. Several studies discuss how the need to fill gaps in chronically under-resourced environments means workers often take on multiple roles (34) and endure expansive workloads, yet typically receive little organizational support (10, 13, 20, 33).
However, not all characterizations of this ambiguity are entirely negative. Roche et al., highlight the tension "between holistic Indigenous ways of working and the need for 'boundary setting' in regard to individual workers' roles and 'being on call' for community/family members" (33) (p.533) as a source of both stress and support for workers. While imbued with tension, these positionings can allow workers to gain deeper understandings of the communities and individuals they serve (33) by placing the community itself over formal institutions or organizations in ethical considerations and accountability (34) (p.364).
Distress and its attributing factors
All the studies in this review describe worker grief and/or bereavement as work-related distress. However, the authors' discussions of distress and its attributed factors varied significantly. Specifically, they attribute work-related distress as a result of: 1) psychological responses and negative emotions, 2) bearing witness to injustice and service delivery failures, and 3) the compounding of existing distress, grief, and loss.
Psychological responses and negative emotions
Describing work-related distress in terms of the psychological responses of individual workers is a common theme in the included studies, with the most mentioned outcome being disorders such as traumatic stress, vicarious trauma, burnout, post-traumatic stress disorder and compassion fatigue (10, 30, 31). However, the discussion of the mental health impacts of work varies from a brief mention to the study’s entire focus.
Kanno and Giddings(30) frame mental health workers as exposed to traumatic stress caused by repeated and intensive interactions with traumatized clients. They define traumatic stress as the “occupational distress faced by helping professionals assisting traumatized populations”(30) (p.333) and review 41 years of empirical evidence describing the history and definitions of this phenomenon. But in their exploration of inner-city worker perspectives, Stajduhar et al., make only a brief mention of “connections between helping professions and issues, such as secondary traumatic stress, vicarious trauma, burnout, and compassion fatigue” (10) (p.673).
Bearing witness
A major aspect of how the included studies frame work-related distress is in workers “bearing witness to and caring for people who they perceive to be suffering or living with unmet health and social care needs” (10) (p.673) and of the “perception of government inaction”(10) (p.673). This is described as leading to workers further compromising boundaries around their employment: “many ICWs explained how they saw their clients falling through the cracks of fractured housing, health, and social care systems, and as a result, felt morally compelled to ‘fill the gaps’” (10) (p.673). And further, “Encountering death of a service user can in turn lead to a heightened sense of expectancy in the future, and if death is not worked through adequately or framed positively, a sense of futility may ensue” (32) (p.933).
Several studies note that this form of worker distress is particularly acute when service users die. Lakeman describes the anger felt by workers when they perceived that formal services had failed the person who had died, such as “failing to provide shelter, not trying hard enough to engage with the person, or not marking the death in a respectful way” (32) (p.935). Giesbrecht et al., describe how study “participants shared multiple traumatic accounts of their dying clients and peers falling through the cracks of the systems, receiving little to no support, suffering until the moment of their death, to after death witnessing bodies and belongings being treated in undignified ways” (13) (p.564). Lakeman further reported that the emotional responses of workers were typically triggered by encountering an event that reminded them of the deceased or was particularly stressful, citing that workers sometimes carry hopes or aspirations for service users that are shattered when the service user dies (32).
Some authors note that significant worker distress is caused by the routine witnessing of preventable death, particularly among drug users dependent on toxic criminalized markets. Workers discuss “how the grief and trauma they experienced as a result of routine exposure to overdose events and the significant loss to overdose death in the community contributed to burnout in regards to their role as peer workers”(20) (p.65). Tobin et al., also describes the “sense of fear that pervades communities in which multiple losses—and particularly deaths by suicide—can seem commonplace. The fear is felt in a constant watchfulness, particularly in the immediate aftermath of a tragic death, but also for extended periods of time” (31) (p.137).
The authors in our review did not all share the same perspective on the impact of bearing witness. Against a backdrop of systemic harm, bearing witness was noted to play a role in community resistance to colonial or carceral systems. Dutta et al., state: “We engage in radical and emancipatory ways of bearing witness, which do not replicate fraught gendered, raced, and classed asymmetries that perpetually position some people as onlookers while others are always gazed upon” (34) (p.357).
Compounding and complicated grief
Work-related distress can also serve to compound the effects of grief and loss felt in other areas of workers’ lives and communities. Workers who serve populations with a high prevalence of premature and unexpected deaths and high levels of grief in the community (33) (p.530) may experience complicated grief, identified as “grief which prevents a person from accommodating to their bereavement and which does not lessen over time” (31) (p.133). Complicated grief can, in turn, create the potential for bereavement overload (31) (p.133). Tobin et al., explain that in these situations, “the first bereavement is compounded by subsequent ones and each loss cannot be fully mourned” (31) (p.133). These dynamics may also expose the lack of culturally safe work practices further compounding workers’ distress. Roche et al., describe how, from an Indigenous perspective, loss and grief are interwoven with broader concepts like ancestral, intergenerational, suppressed, and unresolved grief (33). These concepts are often misunderstood by mainstream peers who may treat grief as an individual and linear experience (33).
The distress workers experience from the intersections of personal, workplace, and community grief is further compounded by the social stigma and discrimination their service users face. “Grief is understood to be triggered by losses such as personal bonds, valued relationships, the nonrealization of professional goals, realization of one’s own mortality, and the emergence of past unaddressed losses”(32) (p.943). Lakeman (32) states that the grief experiences of workers are influenced by the marginalized social position of the homeless individuals they work with, as well as their own status as workers in the sector. Giesbrecht et al., reinforce this point indicating that despite acting like family caregivers, workers face differential treatment from health, legal, and social systems that “had profound impacts on the grieving process” (13) (p. 563). Both “the nature of the death encounter as well as the worker’s identification with the deceased impacts on the response to the death”(32) (p. 944). Grief was described as “intertwined with feelings of guilt” (13) (p. 564) as workers question if enough was done to alleviate “a lifetime of suffering”(13) (p. 564) for those nearing end of life.
These experiences also lead to distress within workers’ living relationships: “How possible is it to [grieve] and at the same time give something of yourself to a relationship? I think is a lot to ask of a workforce to hold countless miniature grief cycles within us while continuing to create new relationships” (35) (p.20). Several authors (10, 13, 33) discuss how personal and professional roles can become entangled in these environments: Inner city workers described how they often become “de facto”(13) (p.563) family as they are “often the most consistent and reliable people in their clients’ lives”(10) (p.673). And further how, “Dying and death is medically contained, and the worker is in a similar position to those who may work in palliative care or aged care. The emotional labour of caring for the person is or ideally should be acknowledged by colleagues through gestures of support” (32) (p.933).
Support needs and strategies
All the included studies discuss strategies for supporting workers in mitigating or improving their experience of work-related distress from complicated and compounding grief and bereavement. While these strategies vary considerably, they can be discussed in terms of three main sub-themes: 1) self-care, boundaries and meaning making; 2) working conditions, policies, and procedures; and 3) collective support.
Self-care, boundaries and meaning making
Several authors identify workers’ practices of self-care and their ability to set and maintain positive boundaries around their work as important factors in alleviating distress. Making a ‘‘boundary demarcation’’(32) (p.944) allows inner-city workers to positively frame their relationship to the deceased as professional rather than personal, in pursuit of maintaining their own mental health (30). Access to people and environments that allow workers to successfully reconcile the role of death in their lives and communities are important means of support that help workers to acknowledge the sometimes tragic and undignified ways in which their clients die while also preserving the hope that they can make a difference in the lives of those clients that remain (32) (p.946).
The reviewed studies also described the meaning that workers made of their experience of distress though this varied significantly. Tobin et al. (31), for example, described how the use of silence, or not talking about death, was a way to keep grief hidden from public view and mask a vulnerability associated with the work of caring for people experiencing inequities. Silence, in this sense, is viewed as having “protective value” (31) (p. 14), sparing people from the difficulty of talking about distressing circumstances while also protecting others from the potential harm that this knowledge might evoke. More broadly, Stajduhar et al., (10) note that distress is manifest in inner-city environments because organizations (e.g., housing, community support, substance use support) do not encourage discussions about death and dying. These organizations' service mandates may fail to acknowledge death, dying, grief, and loss as relevant to their work, and thus, do not recognize the value of a palliative approach to care as part of their core responsibilities within inner-city settings (10). Studies (13, 35) also describe the emotional conflict produced by work that holds professional expectations of developing close client relationships yet expects workers to carry on as usual in the event of a client's death.
Working conditions, policies, and procedures
Within this body of literature, authors recommended a variety of solutions for improving workers’ experience of distress. Providing adequate workplace supports through formal psychotherapy and counselling, supporting formalized mechanisms for peer support, and identifying strategies to mitigate risk factors associated with trauma-related stress were common recommendations (30) (p.340). Drawing on broad-based conceptualizations of harm reduction and recognizing the alignment between harm reduction and palliative care principles was found to provide workers with new understandings of death and dying in the context of inequities (10). This approach had the potential to minimize bias and judgements within the health sector more broadly and allowed workers to recognize that death, from a variety of causes, including substance use, was something to be acknowledged and discussed (10).
The mitigation of worker distress through more equitable financial compensation, ongoing education and training related to palliative approaches to care, and mentorship and self-empowerment were also reported (10, 20, 30). For example, acknowledging that inner-city workers are often much lower paid than their professional counterparts, Kennedy et al., (20) suggest that fair compensation could help to address concerns about workers’ potential devaluation and exploitation, and support their sustained retention in the workforce. Supporting inner-city workers through education on a palliative approach to care was reported to have the potential to create work environments that explicitly valued palliative care work as a key feature of inner-city work with people who experience structural inequities (10). Establishment of peer support groups or support systems to address the needs of traumatized employees was also reported as a potential strategy to mitigate and create proactive strategies to manage high levels of workplace-related distress (30).
Collective Support
All the included studies demonstrate some awareness of the structural and systemic factors that lead to social and community service workers’ grief and distress. This includes inequities and other forms of structural violence faced by both service users and providers. Authors of studies included in this review offered suggestions for supporting distress highlighting varied conceptualizations of support needs, strategies, and goals. Several authors framed the goal of identifying and intervening in worker distress for keeping organizations operating and effective. These authors framed support for workers as necessary for organizations seeking to “enable people to keep working effectively in their work despite confronting trauma and death” (32) (p.941) to sustain their larger mandate of service delivery. Traumatic stress can negatively impact the job performance of trauma workers, leading to resignations and high turnover rates (30) (p.346). These perspectives tend to align with support strategies that respond to the emotional and psychological burden of care seeking to prevent and combat compassion fatigue, PTSD, and vicarious trauma.
Authors who make a direct link between social and structural inequities and work-related distress advocate for support approaches that view workers as embedded in the broader context of inequities where their work occurs (10, 13, 20, 34). This perspective values the knowledge and roles that workers hold in their communities, asserting that workers deserve supports that allow them to remain healthy both inside and outside the workplace while caring for people who experience inequities across the life course, including the end of life (10, 13). Some authors go further to emphasize the interconnectedness of care and community and the utility of grief as a critical aspect of care work for those who are both workers and community members. For example, Giesbrecht and colleagues (13) suggest that rather than “pathologizing grief as individual experiences reflective of poor professional boundaries it should be recognized and valued as a likely outcome from quality care provision” (13) (p. 565).
This latter perspective on grief and work is particularly pertinent to peer workers who may occupy dual roles as workers and peers/caregivers/community members. Kennedy et al., (20) highlight the unique knowledge of peer workers, especially in drug-related expertise, as vital for effective services for people who use drugs. This view supports the perspective that the specialized skills of workers in inner-city settings are vital to their success (33). The valuing of peer worker knowledge as legitimate expertise can involve addressing the additional support needs for people who are part of the communities that they serve. Dutta and colleagues expand upon the concept of challenging discourses that perpetuate "colonial, state, and epistemic violence" (34) (p.356), obscuring "complex relationships, alliances, shared histories, and commitments" (34) (p.356). They argue that "damage-centered narratives"(34) (p.356) of community suffering and grief undermine their critical resistance to inclusion in structural violence and instead emphasize the importance of collective responsibility and shared consequences.