Introduction

There exists today a worldwide examination of what it means to live and to die with dignity. Philosophical, ethical, psychological, and cultural considerations about death and dying have become common topics in caring professions and in many quarters of the public. The study is one component of a larger project concerning the meaning and promotion of dignity at the end-of-life [EoL], embracing professional and lay perspectives. Dignity was conceptually defined as an individual’s intrinsic sense of worth coupled with respect on the part of the self and others. This component study was based on the assumption that there is a relationship between the caregiver’s experience and the dying individual’s sense of dignity. Caregivers were the focus of the study not only because of their relational importance in the establishment and reinforcement of a dying person’s sense of dignity, but also because the experience of caregiving can promote or threaten the caregiver’s own sense of dignity.

Studies show that most patients prefer spending the last period of their lives at home [1]. Helping patients to die at home, if possible, is seen as part of “humane healthcare” [2]. However, increasing proportions of hospital deaths [3, 4] show that patients’ expectation to choose a comfortable setting for their end-of-life (EoL) is often not met. Respecting patients’ wish to spend their last days at home can be seen as preserving patients’ dignity and assuring “good death” among their families [4, 5]. Official Lithuanian health policies concerning quality and continuity of care are fairly consistent with others in the European Union. However, many policies are most accurately seen as aspirational rather than implemented. Lithuania represents a country in which much of the direct, hands-on care and medical decision-making are components of informal caretaker roles, in contrast to places where care teams involving specialists working in partnership with informal caregivers are more common. Moreover, Lithuania exemplifies the problem of corrupt negotiation of roles by informal caregivers.

Family caregivers are a great resource for providing dignified end-of-life care to terminally ill patients. While a full review of the large body of caregiver research is beyond the scope of the current study, multiple empirical studies and meta-analyses have already focused on the ways the family members get involved in the caregiving process [5–7], on the roles and functions they take [8, 9], on their needs for support [9–11], and on outcomes [12] they experience while caring for their relatives at the end of life. Of particular note are the contributions of Kristjanson and the idea that families constitute “hidden patients” [8]. In a study of the needs for support of caregivers, Hudson, Aranda, and Kristjanson identified barriers that must be confronted in order to support caregivers, emphasizing the need for communication [13]. However, despite many studies aimed at improving caregivers’ experience and effectiveness of their care, the extraordinary importance of informal or family caregivers in healthcare systems at stages similar to Lithuania’s is sometimes underestimated. For example, in a major literature review of empirically-tested models of palliative care in Europe, Siouta and colleagues documented the benefits of practice based on varied team approaches in different countries [14]. In all the studies reviewed, professionals constituted the teams for integrated palliative care. Non-professional caregivers were not reported as members of these teams. They were mentioned only as embodiment of dependent variables, subjects of the desirable outcomes, namely, improved communication and reduced caregiver burden. Their role as team-members or caregivers was essentially absent. Similarly, Veloso and Tripodoro concluded that the role of family caregivers is too often ignored in considerations of health care policy, and it is often seen as a private, family matter that obscures both its importance to the quality of care and the burdens that the caregiver experiences [15]. Meanwhile, in order to promote collaboration in the care of the patient and provide bereavement support, the needs of the family and other close caregivers throughout the course of the illness must be recognized and attended to [11]. It was recognized that more active involvement of family is highly important in EoL decision-making [16, 17] and care [2].

How does one take on the caregiver role for someone who is dying? What does it mean to become an end-of-life caregiver in Lithuania? Lithuania is experiencing an ongoing shift toward contemporary Western European cultural and professional practices. The 1992 Constitution includes aspirational statements about national values and where the country aims to be in regard to care. Article 38 states that “The duty of children is to respect their parents, to take care of them in their old age, and to preserve their heritage.” Article 53 states that “The State shall take care of people’s health and shall guarantee medical aid and services for the human being in the event of sickness … free of charge at State medical establishments” [18]. These obligations leave a gap between formal and informal care. On the one hand people can get formal services of palliative care in state nursing hospitals, but the level of services, as studies show, are not always in line with patients’ expectations [19]. On the other hand, Lithuania’s National Strategy for overcoming the consequences of aging population seeks to promote the involvement of the informal sector (family, relatives, neighbors) in the long-term care for elderly [20]. However, studies revealed that relatives are not able to care for the sick alone and need professional help to ensure both the basic needs of the patient and the support of loved ones caring for their family members. Integrative care services are rather new, they are not available to everyone, and not everyone is familiar with them [21]. Family members who care for severely ill patients are at risk of exhaustion and deterioration of their health over time. They need not only counseling on nursing issues, but also emotional support and help in combining family and work responsibilities [22]. Informal care giving is a common phenomenon in Central and Eastern Europe (CEE). The lack of support for informal caregivers in particular, and the need for integration of EoL care seem to be urgent in CEE palliative care context [23]. For example, Baji and colleagues demonstrated the impact of demographic changes in Poland and Eastern Europe, and changes to the familial system of care for the elderly and dying urge the necessity for action in EoL care [24]. The unmet needs in all constructs decreased quality of life of family members and increased the care burden [25].

The qualitative study reported here is set in the context described above. It addresses the experiences and perceptions of informal care providers in a health care system with palliative care services that are in a comparatively early stage of development. These are the people who are confronted with complex roles including both the physical aspects of decline and death and questions about how to best provide this care in a way that enhances the dignity of the individual who is facing the end of life. The study is framed from the perspective of role theory and the relational nature of providing and receiving care. The ways that the roles are learned, invented, enacted, and experienced constitute the core of the current investigation. For most care providers, the process of taking on the role and providing for physical and emotional care is tacit. Through the study of narratives of caregivers in a semi-structured format, many of the important tacit elements are made explicit in order to learn how to enhance the experience for both caregivers and those who are cared for.

Much of the existing body of research on families, caregivers, and palliative care has been grounded in concepts and process conceptualized from role theory. Building on conceptual frameworks embodied in these works, the current study is organized around ideas from role theory, which has a substantial sociological grounding going back to Merton’s original formulation [26], but also an intuitive grounding in everyday life that makes it useful in qualitative discourse. A multidisciplinary team (sociology, social work, law, bioethics, public health) of researchers designed the current study which aimed to capture caregivers’ understanding of the process of taking on the role of main caregiver in a healthcare system with developing palliative care services, to conceptualize their understanding of the functions that they assume while being the main caregivers, and to understand how they experienced the consequences they confront as the process evolves and finishes. The team’s aim was to provide insights that would be relevant not only to Lithuania, but also to the Central Eastern European Region as well due to similar context and issues.

The three objectives of this qualitative study were the following: (1) to capture caregivers’ understanding of the process of taking on the role of main caregiver, (2) to conceptualize caregivers’ understanding of the functions that they assume while being the main caregivers, and (3) to understand how they experienced the consequences they confronted in enacting the role.

Materials and methods

Research strategy

The research team used the strategy of applied thematic analysis as presented by Guest, et al. [27] to structure the study. Applied thematic analysis is flexible and does not propose a methodological recipe. The strategy is integrative in that it allows for the pursuit of phenomenological understanding through the use of data collection and analysis methods derived in part from a positivistic tradition. Interview text is data observed and recorded in the real world, meaning that it is positivistic data. The analysis process was designed to seek commonalities of experience reflected in this data, and to apply an interpretive, phenomenological orientation to the systematic assessment and understanding of the essential meaning conveyed by the data. The team used the interpretive phenomenological analysis method advocated by Pietkiewicz and Smith [28]. Although Pietkiewicz and Smith did not identify the use of positivistic data for interpretive elements explicitly, they describe the use of interview (and other empirical, positivistic) data as foundational elements to construct a phenomenological presentation of how people understand a situation. The logic and procedures of the study are shown in Table 1.

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Table 1. Logic flow of the study.

https://doi.org/10.1371/journal.pone.0265165.t001

Sample size and characteristics

In his classic text on interviewing, Spradley emphasized that the selection of informants should be guided by the ability and willingness for informants to share important, complex, and emotional information [30]. In research intended to understand sensitive, sometimes intimate topics, this task typically requires purposeful selection and a high degree of ability to engage and communicate on the part of researchers. The researchers in the current study used these ideas as a guide in constructing an appropriate sample through integrated purposive and snowball methods of engagement. The purposeful and snowball strategies are appropriate in health research “for the identification and selection of information-rich cases related to the phenomenon of interest” [31]. The snowball component was used to identify individuals by “sampling people who know people that generally have similar characteristics who, in turn know people, also with similar characteristics” [31].

Two criteria were used in recruiting and screening the sample members. The criterion of being an adult who had cared for a loved one who died of an incurable disease was important in order to learn about a full cycle of assuming the caregiver role, actively providing care, and ending in the caregiver role. The second criterion was that the loved one’s death had occurred within the previous five years. This was important to take into account the changing context of services and social conventions. Potential informants were invited to participate in the research by responding to an announcement on the websites of organizations that brought together relatives and persons with incurable illnesses in 2020. Informants were also engaged through personal contacts and by asking interviewees to name a familiar person who had experience in caring for a loved one suffering from an incurable disease at the end of his or her life. The interviewers found their superficial recognition or familiar relationship with 16 participants to be particularly valuable in engaging them and acquiring snowball referrals. All potential participants were contacted by telephone, screened, and invited to participate if they met the study criteria. This selection process produced no drop-outs from the study. Twenty-eight in-person interviews were conducted privately at a location chosen by the informants, at their home or workplace. Six interviews were conducted via audio visual software at locations chosen by the participants. Interviews ranged from 45 min to 88 minutes. Recruitment continued until the researchers judged that saturation had been reached, and significant repetition of codes and categories was occurring. The sample allowed the researchers to emphasize the fundamental commonality of informant experience while allowing for variations in order to fully develop themes from the data.

The researchers concluded that substantial saturation of content categories was reached after 33 interviews, at which point interviewing stopped. This was determined by the research team’s high degree of agreement that data that were being consistently coded in specific groups or categories, and that new coding was not repeated significantly.

Table 2 profiles the participants, 29 of whom were women. Six were over 60 years of age, and the majority were middle-aged. Most of the caregivers (N = 20) were adult children of the person being cared for. The other caregiver relationships to the ill person were as follows: spouse (N = 9), sibling (N = 2), adult grandchild (N = 2). Twenty-two of the 33 people the sample group cared for had a primary diagnosis of cancer. Twenty-three were sixty years of age or more. In 25 out of 33 cases, caregiving took place primarily at home.

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Table 2. Profile of caregivers participating in the study.

https://doi.org/10.1371/journal.pone.0265165.t002

Prior to the study, the research project was approved by Kaunas Regional Ethics Committee of Biomedical Research in Lithuania [No. BE-2–86, issued 23–07-2020]. The aim of the study was explained personally to each participant including the meaning of terms, possible inconveniences involved in participation, and a guarantee of confidentiality and data protection. Each informant’s written consent was obtained, or in the case of the five interviews conducted using audio-visual software because of pandemic conditions, video recordings were made and archived. The practice of video recording of consent to participate in research is relatively new. The researchers and ethics experts concluded that the interviewers could make use of the media, consistent with earlier successful large-scale applications of the practice [32]. The use of this method of obtaining informed consent proceeded smoothly, and without apparent issues.

It is noteworthy that five research interviews were conducted through audio-visual media because of the COVID-19 pandemic and public health orders to avoid in-person contact. The interviewers proceeded cautiously until they were convinced that the media were not adversely affecting data collection. In fact it was apparent in some cases that participants were already accustomed to sharing personal information in this way, or at least they were essentially uninhibited. In discussing the experience with participants, some expressed that they may have spoken more freely or discussed some topics more quickly because of the medium of the interview. The effects, if any, of media in collecting sensitive data remains a matter for further research. Sample of raw interview text are shown in S2 File.

Results

Four themes and related categories were found to structure the process, role, and meaning of becoming a main caregiver. These are presented in Table 3. The main themes are as follows: (1) inaccessibility and mistrust of public care services for persons with terminal illness, (2) moral obligations and responsibilities of immediate family and friends, (3) cultural traditions, (4) the caregiver feels responsible for everything.

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Table 3. Themes and categories.

https://doi.org/10.1371/journal.pone.0265165.t003

Discussion

This study identifies four themes that describe the social role of main end-of-life caregiver in its social context. The themes also address the process of taking on the role of caregiver. Study participants shared their experiences and understandings from their own frame of reference, which was accepted as the context of the thematic analysis. One strength of the study is that taps the internal sense of identity in the role along with the surface persona that descriptions of caregivers are often limited to in research. The themes are not claimed to be universal, and experiences vary, but there was a consistency in the sample suggesting that the themes represent significant phenomena in the study’s Lithuanian setting, and probably beyond. The findings come from accounts of volunteers, not from a random sample of the population of caregivers. Since any generalization from the findings of studies of this type have to be made on conceptual rather than statistical bases, the findings are particularly valuable as the building blocks for future examination of constructs and hypotheses related to the overall concern for quality of care and dignity at the end of life.

Informants shared that they became informal caregivers in part because of the poor quality, including the inaccessibility, of public medical facilities and services. These findings from the first theme (Inaccessibility and mistrust of public care services) are similar to the ones in previous research studies conducted in Lithuania which revealed that the mechanisms for providing necessary services were not yet sufficiently developed. Furthermore, there were no favorable conditions for independent living in the community, because care-at-home was not accessible [19, 33]. There have been local improvements in services that may not be consistent with some of the participants’ experiences, but the circumstances that the participants lived in are likely to continue. Informal caregiving was seen as a medical necessity, in addition to any relational motives for caring for another. This theme involved a perception that was founded on experience. The remains of the authoritarian devaluation of the individual by professionals and government systems were evident to the caregivers, although for many this was a given that they were accustomed to, and there were exceptions. Professionals’ and systems’ failures to serve those in need of care meant that the main role of care had to be taken by someone else, informally, without training in preparation for the challenges involved. Informants did not share an expectation that all care should essentially be a state responsibility. Some informants shared their understanding of the difficulties faced by professional and non-professional medical staff. But in the face of difficult medical situations and diagnoses, they were frustrated that they could not get adequate necessary technical support, expert guidance, cooperation, or communication. Isolation rather than partnership was predominant.

A second theme (Moral obligations and responsibilities of immediate family and friends) states that one becomes a caregiver because it is the right thing to do morally, in certain circumstances. This theme was determined by family norms and other social norms and expectations as well as by the individual’s own moral character. The position of the individual in a constellation of interpersonal and structural family relations might dictate whose moral responsibility it was to become the caregiver. There was not a ritual or formal calculus of who would be the main caretaker, but there was typically a tacit understanding of how roles should develop to meet care needs. Filial and marital relationships were predominant determinants of this role assignment. The significance of the theme is that morality of caregiving was important to the caregivers, but it is not often included in research on caregiving. A comprehensive and sufficient caregiving partnership would acknowledge the role of professional support in matters of balancing formal and moral determinants of caregiving. According to previous systematic review studies, “the recognition of the value of the caregiver role may contribute to a positive caregiving experience and decrease rates of patient hospitalization and institutionalization” [34] which consequently might lead to more respectful and dignified communication between health professionals, patients and their caregivers and “supports the ethics of care and dignity conceptual frameworks” [35].

The third theme (“It’s our generation”: cultural aspect) emphasizes caregiver as a social role, consistent with earlier studies. The informants clearly articulated the power of culture as a determinant of role prescriptions and expectations. The theme shows that cultural traditions are not only material, they also are passed down in relational practices. One of the predominant traditions was that people from younger generations take care of older relatives. But this theme includes another important factor, the changing society and social context, especially the increasingly complex roles of the middle-aged women who do much of the caregiving. The theme of cultural traditions of what is expected of “our generation” is coupled with the acceptance of the caregiving role, even when it is added to the roles of wife, mother, worker, and community member, leading to more expectations than one can readily fulfill. In order to be complete, research on caregiving should account for the many roles that are filled simultaneously, in detail. Informants, for example, sometimes spoke of conversations with the people they cared for concerning whether or not to stop formal employment in order to be caregiver. This common conversation may become a focal point for working out fundamental relationship responsibilities at the end of life. The theme of generational responsibility for care was sometimes strained by contemporary role demands in other areas of life. Contemporary social and economic realities were sometimes acutely in conflict with cultural patterns. The issues of caregivers’ confusions on sharing responsibilities with professional care providers, as well as their uncertainty regarding their role in care of severely ill patients, followed by burdens and loss of caregivers’ dignity were also reported by recent Norwegian, Czech and Iranian qualitative studies [25, 36, 37].

The fourth theme (The caregiver feels responsible for everything) is linked to the mix of internal and external factors determining the caregiver role and its meaning. It builds on the substance of first three themes present. There was a clear sense of feeling “responsible for everything” that can be understood partly by listing the many facets of the role: practical nursing and learning how to do it, consultation with doctors and being the mediator of communication between doctor and patient, practical management of the logistics of care, providing emotional support, and exhaustion. These are described in a number of studies. But another element of the theme of being responsible for everything relates to the risk of what Nemati et al. referred to as disintegration, “a state of helplessness and turmoil in the caregiver’s personal, emotional and family system” [6]. As the disease progressed and the demands of care became greater, the isolation increased as other social contacts withdrew. One set of acute examples of this phenomenon sometimes occurred in the various inpatient units where patients with incurable conditions were assigned. The perceived necessity of staying in the hospital around the clock with the patient to provide safety and to ensure even minimal care represented a major challenge to the caregivers.

The challenge was compounded by the need to provide informal payments, simply called bribes, for administrators and providers of each element of service that they performed. This practice was a consistent reminder that being a patient or a caregiver was not valued in its own right, that payment was required even to go through the motions, that the value of the human being was reduced. Participants surfaced a Lithuanian version of what Garcia [38] referred to as the “open secret” of corruption as they experienced Lithuanian EoL care and services. The matter is more than corruption in the form of illegal advantages obtained in return for something of value. The practice of giving gifts, providing envelopes of cash, and showing gratitude in health care was very complex. The caregivers descriptions of the situation confirmed Praspaliauskiene‘s analysis [39]. The caregivers’ difficulties around payment for care services is also consistent with the findings of Transparency International [40, 41]. While it has been argued that, given the massive prevalence in society of symbolic informal payments for medical care, society does not consider this to be a reprehensible and dangerous phenomenon, which should be punished by criminal law, but rather it is recognized as a social norm [42]. Norm or not, informal payments contributed to the sense of being responsible for practically everything to do with caregiving.

The level of importance of this theme transcends the constructs of caregiver burden and being overwhelmed. Being responsible for everything can take a toll on caregivers, rendering them into a state of feeling powerless, less able to understand themselves in their role as the agents of effective, compassionate care. The scarce institutional support for informal (family) caregivers and a lack of cooperation are relatively common for many other countries in the CEE region [23]. The successful development of end of life care services in Poland, while limited to cancer patients, is rather an exception from the rule that gaps in equal access to palliative care and integration of services. This represents the impact of political (social) changes to the caregiver role in the CEE countries including Lithuania [43]. In Lithuania psychosocial services were not easily accessible for the relatives of the patient. An earlier study showed that patients’ family members and relatives, who were constantly caring for their patient, were particularly in need of services to allow rest from daily patient care [44]. Caregivers’ health problems related to their role in patient care were also observed [45].

The results of the study confirm earlier findings that the role of family caregiver is not static with fixed obligations and clear outcomes [22, 46]. The correlates or determinants of the role are not all fixed. The process of becoming a caregiver involves taking on and evolving a set of role dimensions related to the situation and the individuals in it. Since there is a process, or series of sequential stages, involving a number of identified variables that determine the experience of caregiving, it is possible build a model to reduce the difficult aspects of the role and to improve the experience for the caregiver and the one cared for alike. These can be done at the micro level, as professional and non-professional teams do in some places in developing care plans. In fact, each individual case is its own entity, with its own cluster of role elements and meanings that are gleaned from enacting them. This would be the realm of sound clinical practice with a partnership orientation.

A broader way of thinking of the problems of caregivers and the consequences of the problems can be considered when caregivers are thought of as a population at risk in a given community. This public health orientation is based on demographics of aging populations in many societies and the number of people assuming the caregiving role. Not all caregivers have trying experiences, but enough do to merit their being considered as a population at risk. Public health modeling puts into play a range of research and intervention possibilities. Any organized attempt to influence the public’s health behavior involves epidemiology of the conditions involved, specification of what would constitute desirable outcomes, clarification and education about the problems in terms that the public can understand, influencing the public’s valuation of alternatives, and provision of the resources to allow change to happen. Policy and political commitment are necessary for the development of concrete resources and the public health infrastructure to organize campaigns. Health services research is invaluable in this process, particularly the evaluation of different ways of framing policy, service delivery systems, specific professional practices, administrative discretion, and financing arrangements in terms of outcomes in well-being and dignity of those who are near death and those who care for them.

Caregivers have ideas based on their experiences of caring. Their ideas about what constitutes dignity would form a critical outcome that should be further investigated and operationalized. The idea of evidence-based practice derived from public health systems research should include the valid perspectives of all the stakeholders in order for them to be both agents of change and beneficiaries.

Conclusion

The themes developed in one small study giving voice to the caregivers do not describe the full experience of caregiving at the end of life. However, they do represent important elements of the caregiving experience as it is experienced by caregivers. Recognition of caregiving experiences are essential in planning services and ways to deliver them that are meaningful and effective. The process of assuming the role of caregiver and evolving its meaning is unique in each instance, but there are commonalities that can be understood and that should be taken into account in practice, both clinical and public health. Many of categories and themes in this Lithuanian study are based on aversive experiences with current care systems. These may highlight elements of experience that are not well appreciated in research and service planning. Future research can further illuminate these, and particularly the significance of aversive and positive experiences of the process of becoming a caregiver in order to enhance the dignity of caregiving and thus of dying.

Supporting information