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Caregiver’s burden at the end of life of their loved one: insights from a longitudinal qualitative study among working family caregivers

Abstract

Background

Growing numbers of people with advanced illnesses who wish to die at home, a concurrent decline in the accessibility of professional home care, and policies aiming at prolonging work participation are increasing the reliance on family caregivers. This study aimed to describe trajectories in burden of working family caregivers who care for patients with a life-threatening illness, and identify factors in work and care that are related to changes in burden over time.

Methods

Semi-structured interviews were held in one to four rounds between July 2018 and November 2020 with 17 working family caregivers of patients with a life-threatening illness living at home. Transcripts were analysed as a single unit to create timelines per participant. Next, individual burden trajectories were created and grouped based on the course of burden over time. Factors related to changes in burden were analysed, as well as similarities and differences between the groups.

Results

It was common for family caregivers who combine work and end-of-life care to experience a burden. Two trajectories of caregiver burden were identified; caregivers with a persistent level of burden and caregivers with an increasing burden over time. Family caregivers with a persistent level of burden seemed to be at risk for burnout throughout the illness trajectory, but were often able to cope with the situation by making arrangements in care or work. Caregivers with an increasing burden were unable to make sufficient adjustments, which often resulted in burnout symptoms and sick leave. In both groups, burden was mostly related to aspects of the care situation. The emotional burden, a decreasing burden after death and a different view on the trajectory in hindsight proved to be important overarching themes.

Conclusions

Providing care to a loved one nearing the end of life is often emotionally burdensome and intensive. To facilitate the combination of paid work and family care, and reduce the risk of burnout, more support is needed from employers and healthcare professionals during the illness trajectory and after death. Bereaved family caregivers also warrant more attention from their supervisors and occupational physicians in order to facilitate their return to work.

Peer Review reports

Introduction

Due to the growing number of people with advanced illnesses who wish to die at home and a concurrent decline in the accessibility of professional home care, there is an increasing reliance on family caregivers to care for patients with a life-threatening illness at home [1]. Care demands largely depend on the type of illness of the patient. In general, three distinct disease trajectories until death have been described: acute decline in functioning (e.g. aggressive cancers), fluctuating deterioration (e.g. organ failure) and gradual decline (e.g. frailty or dementia) [2]. Each illness trajectory differs in the course of the decline in functioning, which implies different requirements in terms of the nature and intensity of care. Generally, when health deteriorates, the need for intensive care from professional caregivers as well as family caregivers increases [3].

In addition to the patient’s illness trajectory, previous research has studied trajectories in well-being and distress among family caregivers. A study using serial qualitative interviews has indicated that family caregivers of lung cancer patients shared much of the illness experience of the patient from diagnosis until death. Experienced distress in social, psychological and spiritual domains followed a similar pattern to the distress suffered by patients, and was mainly shaped by the nature of the illness and the availability of care for the patient [4]. Also, research has shown that about one in five family caregivers of patients at the end of life experienced a heavy care-related burden [5]. A recent systematic review has found that the most important factors related to burden in family caregivers were the duration of family care and the patient’s dependency level [6].

In addition to the illness trajectory and care situation, family caregivers’ experiences may be shaped by other factors as well. More than half of the family caregivers of patients at the end of life have paid work [5]. Analysis of first-round interview data from the current study has identified four domains that influenced the experiences and needs of working family caregivers of patients with a life-threatening illness. These domains were: family caregiver characteristics, the care situation, the situation at work, and the context (e.g. ability to share care, and communication with healthcare professionals, organizations or municipalities). In turn, their experiences and needs sometimes affected caregiver health and well-being, or prompted certain actions or strategies [7].

Previous research has shown that family caregivers in more demanding care situations are more likely to make changes to their work situation [8]. Another study has found that about a quarter of the caregivers of patients with advanced cancer had changed their work situation (e.g. reduced working hours, or taken leave) following the patient’s diagnosis. This change in work situation was associated with worse mental health [9]. However, the causal direction of the relationship between mental health and work changes remained unclear. Also, the aforementioned changes in the work situation could involve financial costs for both the caregiver and the employer. Caregivers might experience immediate losses in income and long-term losses in future retirement benefits if they are unable to reconcile work and care demands and/or either leave the workforce entirely or reduce working hours. Employers might experience costs related to replacing workers who leave the company, work interruptions, or productivity loss (e.g. absenteeism and/or presenteeism) [10].

Little is known about the various trajectories of caregiver burden related to combining paid work and family care at the end of life. This suggests that more attention is needed for the impact of both the characteristics of the care situation (e.g. disease prognosis, patient’s dependency level) and characteristics of the workplace on changes in caregiver well-being over time. Equally, more attention needs to be paid to the influence of caregiver burden on the provision of family care at the end of life and participation in the labour force over time. In addition, most studies regarding the combination of paid work and family care at the end of life are cross-sectional [11,12,13,14]. Prior longitudinal studies were quantitative, and a qualitative description of the experiences over time of working family caregivers at the end of life is lacking. The current study elaborates on an earlier cross-sectional study [7] by performing longitudinal qualitative analyses using several rounds of in-depth interviews with working family caregivers of patients with a life-threatening illness. The aim was to describe the trajectories in the burden for working family caregivers of patients with a life-threatening illness, and to determine which factors in paid work (e.g. demands and resources) and care (e.g. intensity and illness progression) are related to changes in burden over time. Knowledge about these trajectories can help family caregivers, employers and healthcare professionals to obtain or provide timely and sufficient support in order to reduce or prevent undesirable consequences of combining family care and paid work.

Methods

Design and participants

This study was designed as a longitudinal qualitative study using in-depth interviews with working family caregivers of patients with a life-threatening illness. Family caregivers were recruited via general practitioners based in various regions in the Netherlands. Purposive sampling was used, ensuring as much variation as possible with regard to gender, working hours, sector, illness type, and intensity of care. The general practitioners handed out participant information letters to family caregivers of patients living at home with a life-threatening illness (e.g. incurable cancer, chronic lung disease, heart failure, dementia, or progressive neurodegenerative disorder), where the caregiver combined this task with paid work for at least twelve hours per week. In addition, family caregivers were recruited using convenience sampling via posters in several departments of a Dutch academic hospital and an item in the hospital’s corporate newsletter. Interested family caregivers could contact the primary researcher (FB) and were provided with the participant information letter.

An online questionnaire was completed by participating family caregivers, providing information about their gender, age, education, work characteristics (e.g. employed or self-employed, working hours per week and sector), and characteristics of the care situation (e.g. relationship, illness type, caregiving tasks, intensity of care, and place of residence of care recipient). Participants were included if they were aged 18 or older, provided family care for at least one hour per week to a patient with a life-threatening illness who lived at home, and combined this with paid work for at least twelve hours per week, all at the start of the study. Participant characteristics are presented in Table 1. The consolidated criteria guidelines for reporting qualitative research (COREQ) were followed for reporting on qualitative data (see Additional file 1) [15]. In addition, the criteria for methodological rigor in qualitative studies adapted from Lincoln and Guba were followed (see Additional file 2) [16, 17].

Table 1 Characteristics of participants according to the trajectories of burden (n = 17)

Data collection

Semi-structured interviews were held in one to four rounds between July 2018 and November 2020. Interviews were held every six months or at a different frequency if indicated by the disease (e.g. one-month intervals in caregivers of advanced cancer patients, but eight- to ten month-intervals in caregivers of people with dementia or organ failure, which progressed less rapidly) [18]. Eighteen family caregivers participated in the first round of interviews, in which data was collected until no new themes emerged. The participating family caregivers were then followed for a longer period of time in order to describe their trajectories in burden. One participant withdrew from the study after the first interview for unknown reasons and was not included in the current analysis. The relative of one of the other participants died shortly after the caregiver had agreed to participate. This family caregiver was therefore only interviewed once. However, the caregiver’s experiences with the situation and timeline of care and paid work were discussed in retrospect, and therefore this participant was included in the analysis. In total, 17 participants were included for analysis in the current study.

All interviews were conducted by one female researcher who was trained in in-depth interviewing (FB). The interviews were guided by a topic list, which addressed the personal situation (e.g. own health, care situation and work situation), experiences with the combination of work and care, and support and other needs. Communication (e.g. at work, with healthcare professionals, with organizations or municipalities, or with the care recipient or family) was added to the topic list after analysing the first-round interviews as this proved to be an important topic for family caregivers [7]. In subsequent rounds of interviews, special attention was paid to changes in these topics over time and previous interviews were reread in preparation. At the end of each interview, the most important themes and changes were summarized by the interviewer and checked by the participant. The interviews were held at the family caregiver’s own home, at the premises of VU University Amsterdam, or via video calling. All interviews were audio-recorded and the duration varied between 45 and 120 min with a total of almost 64 h of recordings. Ad hoc field notes and a summary of the conversation were noted down after each interview, which provided input for the subsequent interviews.

Data analysis

The interviews were transcribed verbatim and were analysed in ATLAS.ti 9 following the principles of thematic analysis [19, 20]. The themes and framework that arose from the first round of interviews have been described in more detail in the first paper of this study [7]. The longitudinal analysis used in the current paper was based on 53 interviews, carried out with 17 participants over a time period of 2.5 years. All transcripts from each participant were analysed as a single unit to investigate individual experiences and changes over time. Individual trajectories were then drawn in a graph with separate lines indicating changes over time in the care intensity (low–high), work demands/resources (negative–positive) and caregiver burden (low–high) to grasp the large amount of data. This provided a first overview of the individual trajectories (including changes in burden, work and care) of the family caregivers (see Fig. 1 for an example). In each interview, family caregivers indicated whether and how the care situation had changed compared to the previous interview, and if the care had become less or more intensive (in hours or in their perception). The work line indicated the balance between demands and resources at work, and was based on changes in experienced support at work, flexibility, work adjustments or work pressure. The level of caregiver burden was based on statements that the situation was more or less demanding, exhausting or burdensome compared to the previous interview, and whether caregivers spoke of strain, distress, crossing their own boundaries or the fact that the situation was starting to take its toll. Within the individual trajectories, specific events related to the aforementioned topics (e.g. hospital admissions, transition to nursing home, or start of new job) were marked in the timelines to gain insight into factors that triggered changes. The trajectories of five participants were analysed and discussed by FB, HRP and BP. Discrepancies in the trajectories made by the three researchers were discussed until consensus was reached. The remaining trajectories were analysed by FB. After that, the trajectories were grouped based on the burden line, to create groups with a similar care burden course over time. Factors related to changes in burden were analysed, as were similarities and differences between the resulting groups. The groups were extensively discussed by all team members throughout the analytic process.

Fig. 1
figure 1

An example of an individual graph of developments in burden, work and care. Note: This is an example of the development in burden, family care provision and work demands/resources over time. This example was created based on the experiences of multiple participants to ensure privacy, since the trajectory of one person including all specific events in this trajectory contains identifiable information. The changes in the lines are based on statements of the family caregiver and do not represent absolute scores

Results

Qualitative analysis revealed that all family caregivers experienced a burden to some extent over the course of the illness trajectory. Broadly, two groups were identified, each with a similar course in the level of caregiver burden over time. The first group had a persistent (moderate or high) level of caregiver burden, and the second group experienced increasing caregiver burden over time. In both groups, caregiver burden was mostly related to the care situation (e.g. intensity, dependency of the care recipient, illness progression and acute care situations). In some cases, the work situation (e.g. irregular working hours, little support and understanding from supervisors, and/or mental workload) also caused a heavy burden.

The group that experienced a persistent level of burden differed from the group with an increasing burden. The caregivers with a persistent level of burden indicated that they were at risk of burnout throughout the trajectory, but somehow managed to cope with the situation and remained active at work. However, the caregivers with an increasing burden experienced more and more burnout symptoms over time and were on sick leave from work at some point. Caregivers with a persistent level of burden were often able to make adjustments to the situation, using support resources in care and/or paid work, especially at times that required intensive family care.

The trajectories of caregiver burden and their relation to developments in paid work and family care are described in more detail below. This is followed by a discussion of overarching themes that proved to be important for both trajectories. These themes related to the emotional burden of caring for someone nearing the end of life, decreasing burden after death, grief and the return to work, and having a different view on the trajectory in hindsight.

Persistent level of burden

In the first group, family caregivers experienced a persistent (moderate or high) level of caregiver burden, despite some small fluctuations, over the course of the illness trajectory. These family caregivers often provided care to more than one person or intensive care to a partner. The balance between resources and demands at work was generally stable and positive over time. The caregivers were able to make use of flexibility, working remotely and autonomy at work, but the availability of such options was often not directly linked to fluctuations in the level of burden. Temporary increases in burden were related to transitions in care (e.g. when the care recipient moved to a nursing home), hospital admissions and returning home after a hospital stay (Table 2, Q1), periods of intensive caregiving, deteriorating health of the care recipient, or death of the care recipient. Pressures when arranging care and poor communication with healthcare professionals, municipalities and other organizations were sometimes also associated with a higher burden. Family caregivers who experienced a persistently high burden over time mentioned that their own capacity decreased over time and that their stress levels were constantly high (Table 2, Q2). Often, the burden stabilized (temporarily) or even decreased slightly when family caregivers could share care tasks with others, when the intensity of care decreased or stopped, when the care recipient moved to a hospice (Table 2, Q3), or when work adjustments were made (e.g. working fewer hours). Sometimes psychological help to cope with the situation or a coaching programme also stabilized or decreased the burden. Although the family caregivers in this group generally had resources at work and help from others, the level of burden remained relatively high over time. In one case, the burden was at a persistent level, but decreased substantially after the caregiver changed jobs (#4, Table 1). The new job was easier to combine with family care (e.g. no weekend or night shifts, less complex tasks) and the new supervisor was more supportive. Family caregivers noted that providing intensive care and/or care to multiple care recipients was very exhausting, and caregivers reported that their mental fatigue increased over the course of the illness trajectory (Table 2, Q4).

Table 2 Quotes trajectories

Moderate versus high persistent level of caregiver burden

Within the group of family caregivers who experienced a persistent level of burden over time, there was variation in the reported level of burden. Some family caregivers experienced a high burden over the course of the illness trajectory of the patient, while others experienced a moderate burden. During the analysis, it became apparent that family caregivers who experienced a higher burden often had a strong sense of responsibility, had high expectations for themselves (Table 2, Q5) and wanted to solve problems themselves. Having less confidence in the ability of others to provide care or believing that care provision is more efficient when they personally provided it, and taking up more caregiving tasks because of this, was also typical for caregivers with a higher burden. These beliefs made it more difficult for them to accept help from others. A very intensive care situation, having little time for relaxation, feeling guilty about moving the care recipient to a nursing home, or feeling guilty about not spending enough time with the care recipient, were features also seen in caregivers with a higher burden. The sudden death of one care recipient while having to provide intensive care to another care recipient and/or experiencing high work pressure was also related to a higher burden (Table 2, Q6). Also, having difficulties with the changing behaviour of the care recipient and experiencing the care situation as psychologically or emotionally tough was linked to a higher burden. The pressure of having to arrange everything, while experiencing difficult communication with municipalities, other organizations and healthcare professionals also increased the burden. In some cases, even though there was flexibility and autonomy at work, high work pressure in combination with a feeling that their supervisor did not understand their situation was related to a higher burden.

Family caregivers who persistently experienced a moderate burden over time often had a positive attitude, shared care tasks with others, and had flexibility and autonomy at work. It is noteworthy that family caregivers who persistently experienced a moderate burden were more likely to have a job in professional healthcare (e.g. a home-care staff member, a nurse, the former CEO of a nursing home). They mentioned that, because of their background in professional healthcare, they had experience with ill people and changing behaviour, they were familiar with the care sector, they knew how and where to arrange help and they had short lines of communication with other healthcare professionals. The caregivers who worked in professional healthcare also felt more comfortable in performing care tasks for their relatives and were sometimes better able to put things in perspective. In some cases, they had worked as a supervisor or CEO, knowing exactly what kinds of arrangements were possible within the organization. However, there were also some family caregivers with a job in healthcare who persistently experienced a high burden. For them, the ‘advantage’ of being a healthcare professional could not compensate for the emotional burden of the situation. In some cases, they found it difficult to focus on their caregiving role as a family member, because they were critical of the work of the healthcare professionals they had to deal with (Table 2, Q7).

Burden increased over time

In the second group of family caregivers, the burden increased over the course of the illness trajectory. The burden increased when the care became more intensive, when there were acute situations, such as a crisis situation or hospital admission, when the health of the care recipient deteriorated, when the dependence of the care recipient on the family caregiver increased, or when the care recipient was in the terminal phase and death followed (Table 2, Q8). These family caregivers often shared a home with the care recipient. Some caregivers struggled to accept help from others, because it gave them the feeling that they had failed at caregiving (Table 2, Q9). The family caregivers in this group all experienced burnout symptoms over the course of the illness trajectory of their loved one. They reported symptoms such as tiredness, stress, headaches, palpitations, constant adrenaline (Table 2, Q10), or post-traumatic stress disorder (PTSD) from adverse events in the care situation (Table 2, Q11). Some reported that they were in survival mode, felt trapped in the situation or did not have time for their own life. They also experienced a lack of sleep and consistently did not get a good night’s rest (Table 2, Q12). Almost all caregivers in this group were on sick leave from their work at some point in the trajectory because of their burnout symptoms. Not all caregivers received a supportive response at work (Table 2, Q13). The specific role of work in the burden differed between participants. For some caregivers, the workplace and working conditions increased the burden over time, especially when they did not receive understanding and support, had a negative experience with a supervisor or colleague (Table 2, Q14), or were under pressure at work. Some caregivers found the combination of care and paid work stressful as they had the feeling they were falling short in both their work and their caregiving. Self-employment also contributed to a higher burden in some cases. Although self-employment generally comes with high autonomy, these caregivers did not have support options to rely on and it was sometimes difficult to separate work and care time. For others, conditions at work were better, but not sufficient to prevent burnout symptoms when the work pressure was high and the care situation intensive. There was one exception, where the employer gave the family caregiver complete freedom to take time off for a longer period of time without loss of salary or formal arrangements. Although the burden increased due to the intensive care situation, this caregiver did not experience burnout symptoms (#18, Table 1).

Caring for someone nearing the end of life is emotionally burdensome

Almost all family caregivers found the situation emotionally tough, even when they were satisfied about the way that work and care were arranged (Table 3, Q1). Family caregivers found it hard to see the care recipient’s health deteriorate. They were often very emotional about the transition to a nursing home or hospice when it was no longer possible to keep the care recipient at home. Most caregivers who had lost the care recipient over the course of this study noted that the final weeks or months were most difficult. For a lot of caregivers, it was difficult to estimate how long the situation was going to continue and how the illness would develop. This uncertainty itself was also hard for some caregivers. In the first round of interviews, some caregivers pointed out that the care recipient was very sick and would probably have passed away by the following interview. However, in some cases, the care recipient was still alive at the end of this study, about two years later. Constantly thinking that the care recipient would die soon was emotionally exhausting. They had to adjust expectations, and were often sad or scared. Family caregivers also took the approaching death into account in planning their own lives (Table 3, Q2). They often found it difficult to determine when and how to act when the health of the care recipient declined (Table 3, Q3). This also made it hard to determine when to take compassionate care leave from work. In some cases, caregivers were able to use compassionate care leave or unpaid leave from work for the last weeks of life of the care recipient after good discussions with the professional caregivers about when to take leave (Table 3, Q4). In some cases, family caregivers pointed out that they could cope with the situation because they knew it was not going to last much longer.

Table 3 Quotes overarching themes

Decreasing burden after death

Over the course of this study, the care recipients of seven family caregivers died. For most of these caregivers, the level of burden decreased substantially after the death. Although they were sad, they often also felt relieved because the intensive care demands had stopped and there was room for normal things again (Table 3, Q5). Some caregivers reported that they had been able to prepare for the death of their loved one, because that person had been ill for a longer period of time. Some caregivers felt worn out after the period of caregiving and struggled with feelings of grief and loss. This sometimes complicated their return to work (Table 3, Q6). In most cases, supervisors were supportive and understanding, giving the caregivers space to return to work at their own pace. In some cases, the employer arranged a grief coach to help the family caregiver cope with their grief and loss (Table 3, Q7). Some family caregivers returned to work within a couple of weeks because their work gave them energy and satisfaction. In some cases, caregivers returned to work quickly because they wanted to be loyal to their employer and show their gratitude for the support they had received during the illness trajectory of the care recipient. For some family caregivers, feelings of grief made way for acceptance of the death of their loved one.

Different view of the trajectory in hindsight

Looking back at the period of caregiving, most caregivers found it hard-going, but were also satisfied with how they had handled the difficult situation. However, during the interviews, it became apparent that family caregivers sometimes had a different view of the trajectory in retrospect compared to when they were actually in the care situation. In earlier interviews, they would, for instance, paint a more optimistic picture compared with when they reflected on the trajectory later on. One caregiver specifically noted that it was easier to realize in hindsight what the situation was really like and how they felt at the time. Also, the more difficult the situation became, the harder it was for them to reflect on how things were going because they went into survival mode. In hindsight, some caregivers wished they had accepted help from others earlier in the trajectory. At the time, it felt like failing to bring in more professional care (Table 3, Q8). In some cases, the family caregiver only realized afterwards that the care situation had negatively affected their relationship with their partner, because they were emotionally unavailable and constantly thinking about the care recipient (Table 3, Q9). Some caregivers noted a lack of aftercare following the care recipient’s death. They felt somewhat abandoned by the healthcare professionals and would have liked more support with their grief (Table 3, Q10).Some caregivers indicated they would have preferred to work fewer hours in hindsight than they actually did in the caregiving period. In some cases, the caregiver indicated that their burnout symptoms could have been avoided if their supervisor had been more supportive in considering changes to their work. Also, caregivers reported that knowing more about the available support options would have helped alleviate pressure (Table 3, Q11). Specific recommendations family caregivers had for other family caregivers, the workplace, healthcare professionals and local authorities are shown in Table 4.

Table 4 Advice given by family caregivers to other caregivers, the workplace and local authorities

Discussion

This study aimed to describe the trajectories in the burden of working family caregivers of patients with a life-threatening illness, and to describe which factors in paid work and care were related to changes in the burden over time. In line with prior research [21, 22], almost all family caregivers in this study experienced some level of caregiver burden. Two groups of family caregivers were identified according to their trajectories in the level of burden: those with a persistent level of burden and those with an increasing burden over time. Family caregivers with a persistent level of burden seemed to be at risk for burnout throughout the illness trajectory of their care recipient. When an issue arose, they were often able to cope with the situation by making arrangements in the care or at work. However, they were pushing their limits and often felt exhausted.

Family caregivers with an increasing burden were unable to make sufficient adjustments to alleviate the pressure. For these caregivers, the combination of paid work and family care became too much, resulting in sick leave from work. This is in line with the ‘wear-and-tear’ perspective, which predicts an increase in the burden over time for family caregivers due to the cumulative effects of stressors that exhaust their mental and physical reserves. This might not be surprising, however, since providing care to a loved one nearing the end of life was often emotionally burdensome and intensive. In line with our findings, support for the wear-and-tear perspective has been found in partner caregivers and/or caregivers who live with patients [23, 24].

This study was among the first to describe trajectories of burden among family caregivers based on longitudinal qualitative data. Contrary to previous longitudinal quantitative studies [22, 25], this made it possible to identify events related to changes in burden over time, as well as to describe why these events were of importance. Moreover, opposed to prior research [25], this study did not only focus on the care situation, but also considered the impact of work on care and vice versa. Also, discrepancies between family caregivers’ perceptions during and after the care situation could be identified. The results indicated that the experiences of family caregivers did not only differ between caregivers, but individual experiences also differed over time.

In addition, the framework that has been identified based on the first round of interviews [7] was confirmed by the longitudinal data of the current study. Over time, experiences, feelings and needs regarding family care and the combination with paid work were influenced by four domains (caregiver characteristics, the care situation, the work situation, and the context). These experiences, feelings and needs sometimes had an impact on their health and well-being, or prompted caregivers to take action to improve the situation (e.g. changing jobs or arranging more help with care). Also, changes in health and well-being sometimes had an impact on the situation in multiple domains, for instance, when caregivers experienced an increasing burden and eventually went on sick leave from work.

Our findings correspond with a recent meta-analysis that showed a significant increase in emotional exhaustion when proving care for a relative, which was a risk factor for burnout [26]. Similarly, almost none of the family caregivers in our study experienced a decrease in the burden during the illness trajectory. The burden often only decreased substantially after the care situation had ended. Family caregivers emphasized that they felt sad but relieved after the death of the care recipient, and that there was space for normal things again. Our findings are consistent with other research that has shown that depressive symptoms in bereaved caregivers reduce significantly within three months after death, despite intensive caregiving situations [27]. Prior research has found that, although the burden increased towards the death of the care recipient, about three-quarters of the family caregivers did not perceive this burden as a problem. For these caregivers, providing family care did not feel like a problem because the loved one had previously also cared for them, and providing care felt rewarding [28]. This could possibly help with acceptance and finding closure after the loss of a loved one.

In line with other research [4], family caregivers shared the illness experience of the care recipient, and this often influenced their physical, psychological, social and spiritual well-being. Their needs were dynamic, and varied according to the trajectory [2, 4]. However, the caregiver burden trajectories did not directly reflect the three distinct disease trajectories (namely aggressive cancers, organ failure, frailty or dementia) that have been described by Murray and colleagues [2]. There was no clear difference between the caregiver groups with a persistent or increasing burden in the illness types of their care recipients. In both groups, caregiver burden was mostly related to aspects of the care situation, such as high care intensity, the patient’s increasing dependency, not being able to share care tasks, and acute care situations. Thus, although different illness types impose different requirements on the nature and intensity of care, the degree of dependency of the patient and care availability seemed to be more important in determining the burden and specific support needs. Similarly, fatigue and the level of dependency on the family caregiver have been found in prior research to be associated with caregiver burden and depressive symptoms [29, 30].

Demanding care situations made it difficult to combine care with paid work, especially in jobs with little understanding from colleagues/supervisors or few support options. This corresponds with other studies that have shown that family caregivers who combine work and care experienced the highest burden, and that higher patient dependency in combination with employment was related to caregiver stress [6, 21]. Among the groups of caregivers with a persistent or increasing burden, there were two cases of caregivers whose course of burden was slightly different compared to the rest in the group. Their cases showed that burnout symptoms and long-term sick leave from work could be prevented if there is understanding, flexibility, freedom to take time off from work without loss of salary or formal arrangements, or by making substantial changes in work (e.g. changing to a job with more flexibility and less demanding tasks). In agreement with a scoping review that showed that flexible work arrangements were essential for caregivers [14], our findings also suggest that work adjustments and support at work could make a difference in preventing burnout and sick leave among working family caregivers. Similarly, the results showed that caregivers who received support and had flexibility in their job also returned to work earlier after the care recipient’s death. Returning to a supportive work environment could help employees pick up their work again [31]. This emphasizes that giving family caregivers help in combining paid work with care tasks could benefit both the family caregiver and the employer in the long term.

Most of the family caregivers who persistently experienced a moderate burden had a job in professional healthcare. Having professional experience with caregiving and being familiar with the care sector might make family caregiving easier for these caregivers. This is in line with the earlier finding that self-efficacy for coping with the patient’s illness was negatively related to caregiver burden [22]. However, prior studies have also indicated that “double-duty caregivers” (i.e. professional caregivers with family caregiving tasks) are at risk of developing symptoms of overload and often experience mental and physical pressure [32, 33]. Concomitantly, double-duty caregivers often have high expectations for themselves and want to solve problems themselves because they know how to perform care tasks [32]. Flexibility and understanding from the workplace, as well as discussing the care situation with their supervisor, are important in identifying issues and allowing customized support to be offered [32].

Methodological considerations

The longitudinal design, in which 53 interviews were carried out with 17 participants over a time period of 2.5 years, provided rich and detailed information. Moreover, this made it possible to further clarify themes regarding the combination of paid work and family care at the end of life that were discussed in prior interviews. This approach also allowed differences to be identified in the views on how the combination of paid work and family care was arranged at various time points in the illness trajectory. Interviewing the same participants multiple times also builds trust between the participant and the interviewer, and this enhanced rapport might have made it easier to discuss difficult topics. Moreover, this helped us to interview family caregivers who were sometimes under extreme pressure or even on sick leave from work, and learn about their experiences. It could be that these people would not have participated in such research at that time if they had not already been familiar with it. In this way, we were able to tap into a wide range of experiences. At the same time, some of these caregivers emphasized that they valued being able to share their stories and be listened to.

In addition, analysing multiple interviews from the same participant as a single unit made it possible to create individual timelines of changes in burden, work and care. Although the course of burden over time was roughly the same for the caregivers within each group, experiences with caregiving were heterogeneous and changed over time [24]. Some family caregivers, however, did not have a particularly clear course of burden. Given that their experiences were dependent on various aspects of the care and work situation within a certain time period, we should refrain from ‘labelling’ individual family caregivers on the basis of the burden trajectories. In addition, not all family caregivers were in the same phase of the illness trajectory during the interviews. It has been found that the burden increases particularly as the patient’s illness progresses and in the terminal stage [28, 34]. Hence, it could be that for some of the caregivers who experienced persistent levels of burden during this study, the burden did eventually increase (or decrease) closer to the death of the care recipient. However, this would likely not have led to different trajectories at the group level, since all burden trajectories included family caregivers who had lost the care recipient during the study period. Future research could take the duration and phase of the illness trajectory into account when investigating burden trajectories of family caregivers of a patient at the end of life.

Family caregivers were recruited and included via general practitioners. This could be considered as a strong point, since the general practitioners had detailed information about patients with a life-threatening illness and were often in contact with the family caregivers as well. However, there is a possibility that general practitioners refrained from asking family caregivers in intensive care situations. Even so, we did not miss out on this group since some family caregivers in intensive care situations applied to take part in the study in response to the posters that were placed in a hospital. Furthermore, although we sought for maximum variation in the sample in terms of gender, working hours, sector, illness type and intensity of care, the views and experiences of family caregivers with certain characteristics might be underrepresented. This could for instance be the case for male caregivers or family caregivers with a non-Western cultural background. Prior research has indicated that male caregivers report less of a burden compared to female caregivers, and that gender differences in the caregiver’s burden increase over time among family caregivers who provide end-of-life care in the home setting [30]. Furthermore, earlier studies have found that cultural norms and values among family caregivers with a non-Western cultural background might also influence their caregiving experiences [35, 36]. Hence, it could be that these caregivers have different experiences with the combination of paid work and family care at the end of life, and, accordingly, have a different burden trajectory. Future research could give more emphasis to gender and cultural norms in distinguishing caregiver burden trajectories in the combination of paid work and family care at the end of life.

Practical implications

The family caregivers’ perceptions of the situation often changed over the course of the study. Some caregivers reported in earlier interviews that they had good arrangements for the combination of paid work and family care, while in later interviews they said that this was not the case (or not anymore) and it had been quite tough when they looked back at the situation at that point. This suggests that some family caregivers may find it difficult to recognize or identify unmet support needs at the time when the need is most urgent. It could also be the case that, for some caregivers, not acknowledging that the situation is too demanding might function as a coping mechanism allowing them to keep going. This could be problematic, especially if they refrain from seeking or accepting help and support while burnout is looming.

In agreement with earlier findings [4], key time points when family caregivers might have unmet support needs are the diagnosis, transitions in care (e.g. hospital admission, returning home after a hospital stay, and transition to a nursing home or hospice), when a disease-modifying or potentially curative treatment is stopped, in the terminal stage and after death. Healthcare professionals, such as nurses and home-care staff, could play an important role in supporting the family caregivers of a patient at the end of life at these times. They could use needs assessment tools to discuss potential unmet support needs. The Carer Needs Assessment Tool (CSNAT), for example, has proved to be an effective tool to do this [37, 38]. Moreover, given that the perceptions of family caregivers about how things were arranged often differed over time, discussing potential unmet support needs early on and at key time points in the illness trajectory might prevent a situation in which caregivers keep on going and providing care themselves, while there could be other support options available that they are unaware of or that did not cross their minds. In addition, the results showed that providing care to multiple persons contributed to burden. Given that in the Netherlands, about one in three family caregivers provide care to two or more persons and that this number is likely to further increase in the near future [39, 40], healthcare professionals could be more alert to unmet support needs among family caregivers with care tasks for multiple care recipients.

A supportive workplace appeared to be important in helping family caregivers combine care with work responsibilities. It is vitally important to discuss the theme of combining paid work with family caregiving by creating a safe environment for employees to share worries or issues that complicate the combination of paid work and family care for them. Supervisors could try to accommodate the needs of the caregiving employee by discussing possible solutions and offering tailored support, for instance in the form of flexible work hours, different tasks or working remotely. In addition, organizations should communicate policies regarding formal arrangements more actively, since not all caregivers were aware what support options were on offer. Social workers and occupational physicians could play an essential role in the provision of support for grieving employees and promoting awareness among supervisors [31].

Conclusion

This study showed that it was very common for family caregivers who combine paid work and care at the end of life to experience a care burden. Providing care to a loved one nearing the end of life was often emotionally burdensome and intensive. The burden did not decrease over time and was mostly related to aspects of the care situation. Although the experiences with the combination of paid work and family care at the end of life were heterogeneous and differed over time, two groups were identified in which family caregivers had a similar course in the level of burden. More specifically, one group of family caregivers experienced a persistent level of burden over time, while family caregivers in the other group experienced an increasing burden. The latter group was unable to make sufficient adjustments, which often resulted in burnout symptoms and sick leave from work. To facilitate the combination of paid work and family care, and reduce the risk of burnout, more support is needed from employers and healthcare professionals during the illness trajectory of the patient and after death. Bereaved family caregivers also warrant more attention from their supervisors and occupational physicians in order to facilitate their return to work.

Availability of data and materials

The data that support the findings of this study are available from Amsterdam UMC but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. Data are however available from the authors (hrw.pasman@amsterdamumc.nl) upon reasonable request and with permission of Amsterdam UMC.

Abbreviations

CEO:

Chief executive officer

COREQ:

Consolidated criteria guidelines for reporting qualitative research

CSNAT:

Carer Needs Assessment Tool

FB:

Author Femmy Bijnsdorp

HRP:

Author H Roeline Pasman

BP:

Author Bregje Onwuteaka-Philipsen

FMCG:

Fast Moving Consumer Goods

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Acknowledgements

Not applicable.

Funding

This research was supported by the Amsterdam Public Health Research Institute. The funder had no role in the design of the study, the collection, analysis or interpretation of data, or writing of the manuscript.

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Authors and Affiliations

Authors

Contributions

FB was the primary researcher and contributed to the design of the study, planning of the project, data collection, analysis and interpretation of data and she was the writer of this manuscript. BO-P, CB, AvdB and HRP conceived the initial study design and contributed to the analysis and interpretation of data. All authors commented on draft manuscripts, and read and approved the final manuscript.

Corresponding author

Correspondence to Femmy M. Bijnsdorp.

Ethics declarations

Ethics approval and consent to participate

The Medical Ethics Review Committee of VU University Medical Center approved the study protocol (reference 2018.113). All methods were performed in accordance with the Declaration of Helsinki. Participants provided written informed consent prior to their first interview. At the end of each interview, participants were asked if they could be contacted again for a subsequent interview. All participants received a gift voucher of 20 euros per interview for their participation. Transcripts were anonymized to ensure privacy.

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The authors declare that they have no competing interests.

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Supplementary Information

Additional file 1.

COREQ checklist. Consolidated criteria for reporting qualitative research (COREQ): 32-item checklist.

Additional file 2.

Criteria for methodological rigor. Criteria for methodological rigor in qualitative studies and applied strategies.

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Bijnsdorp, F.M., Onwuteaka-Philipsen, B.D., Boot, C.R.L. et al. Caregiver’s burden at the end of life of their loved one: insights from a longitudinal qualitative study among working family caregivers. BMC Palliat Care 21, 142 (2022). https://doi.org/10.1186/s12904-022-01031-1

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Keywords

  • Family care
  • Paid work
  • Burden
  • Life-threatening illness
  • End-of-life
  • Interview study
  • Longitudinal