The current study focuses on contextual experiences of dignity in nursing homes from the perspective of family caregivers. Dignity is a complex concept that is central to nursing science. When facing vulnerability in the context of dependency, dignity is viewed as ethically demanding (Cochrane, 2010). In one aspect, all human beings possess dignity as an inner and absolute property. Another aspect of dignity is relative and relational, influenced by culture and society (Cochrane, 2010; Edlund, 2002). The current study examines the relative aspect of dignity in nursing homes based on close examination of the narratives provided by family caregivers.
The increasing number of older adults in Western countries will represent a major challenge over the next 30 years (Dale, Sævareid, Kirkevold, & Söderhamn, 2010). As institutions, nursing homes are faced with exceedingly demanding ethical challenges in terms of protecting vulnerable adults in need of extensive care, professional shortages, and rigid routines (Dreyer, Førde, & Nortvedt, 2011; Forbes-Thompson & Gessert, 2006). Ethics in caring for older adults is an important issue (van der Dam et al., 2011); however, perceptions differ in regard to ethical issues among different groups, such as health care professionals, patients, and their relatives (Suhonen, Stolt, Launis, & Leino-Kilpi, 2010). Dignity is one such important ethical issue.
Family caregivers are situated inside and outside the nursing home and are usually positioned close to the patient, both socially and emotionally. Therefore, family caregivers are both observers and participants in nursing homes. Although family members do not have juridical obligations or legal privileges or rights in Scandinavian nursing homes, they still wish to be included by health care professionals in the care of their older relatives. Caring for older adults is often a challenging balance between dependency and dignity, which is the main concern in this research (Dale et al., 2010; Jacobsen & Sørlie, 2010). To date, few research studies have focused on dignity in the context of nursing homes from the perspective of family caregivers.
Bredland, Linge, and Vik (2002) distinguished between objective and subjective dignity. The objective aspect of dignity is a basic human right; according to the International Declaration of Human Rights: “All human beings are born free and equal in dignity and rights” (United Nations, 1948, Article 1). On the other hand, the subjective aspect of dignity is based on personal experiences with other people as well as one’s own interpretation of dignity values. According to Edlund (2002, 2003), and in correspondence with Bredland et al. (2002), human dignity has two aspects: (a) absolute dignity (or objective dignity), which is an inalienable and inviolable dignity, and (b) relative dignity (or subjective dignity), which is mutually interdependent on others and based on relative and changeable experiences.
According to Eriksson (1996), central values in human dignity are autonomy, equality, integrity, uniqueness, freedom, and credibility as individual qualities, and respect, responsibility, protection, and kindness as relational beneficence. Human dignity as an individual and inalienable value implies an inner freedom that is available to everyone. Nevertheless, respect, kindness, and protection as interdependent qualities are not necessarily available to patients, due to contextual attributes.
Human dignity may be associated with experiences of significance or importance, in terms of mattering or having meaning in regard to others. Experiences of the relative and subjective aspect of dignity are related to experiences of feeling safe and being acknowledged and received as a credible person (Edlund, 2003; Eriksson, 1996). Being respected and recognized as a unique and competent individual was found to be essential to older patients (Dale et al., 2010; Jacobsen & Sørlie, 2010; Randers, Olson, & Mattiasson, 2004; Walsh & Kowanko, 2002; Woolhead, Calnan, Dieppe, & Tadd, 2004), whereas disrespect and paternalism within health care were considered violations (Dreyer et al., 2011). The concept of power is an important and present circumstance in caring, especially in the context of helplessness and vulnerability. Power may be potentially constructive or destructive, depending on how it is displayed in close and intimate nursing care relations (Juritzen & Heggen, 2009). Relative dignity can be transformed, destructed, or rebuilt, according to Edlund (2002).
Family caregivers are frequently involved in their family members’ daily experiences of dignity at the nursing home, as well as in their own experience and interpretation of human dignity as a family caregiver. This dualistic role is complicated and may create and increase vulnerability and discomfort despite the family caregivers’ general competency and autonomy outside the nursing home. Through focus group and individual interviews with family caregivers, Duncan and Morgan (1994) uncovered an emphasized request for an ongoing relationship with staff based on emotionally sensitive care, which may increase experiences of dignity. In a Canadian study based on a participatory action research approach that examined relationships between families of residents and the health care team, findings indicated that the family members described their attempts to form and sustain individual relationships within a system marked by limited resources increased the number of patients and personnel draught (Austin et al., 2009). Families expressed their desires to be trusted for their knowledge of the residents, which is a premise for individualized nursing care. Incidents of lost clothing or damage to personal items appeared to be a source of much distress. According to the participants, clues of caring often lie in “the little things,” because little things represent personalized care, which is important in terms of human dignity (Austin et al., 2009).
Time constraints and workforce reductions hinder sensitive and individualized care. A phenomenological study of the ethical environment in a nursing home in Sweden based on observations of 12 residents revealed experiences of being together without meeting, indicating the lack of social relationships among patients. Findings reported that the residents had unfulfilled desires of autonomy (i.e., being dependent and not in a position of deciding) and being respected, noticed, and receiving help (Bolmsjö, Sandman, & Andersson, 2006). According to previous research, ethical problems arose in different situations where residents’ interests were considered to conflict with the interests of other residents or staff (Dale et al., 2011; Dreyer et al., 2011; Nolan, Davies, Brown, Keady, & Nolan, 2004; Suhonen et al., 2010). Many moral issues surround care in nursing homes. These issues again relate to the concerns of residents, family caregivers, and staff. The current article highlights narratives from the perspective of family care-givers.
This study sought to interpret and understand narratives provided by family caregivers regarding experiences of human dignity in terms of how their loved ones were respected and cared for by health care personnel in Scandinavian nursing homes.
The following research questions were investigated: (a) How do family caregivers describe and explain experiences of dignity in nursing homes? and (b) How do family caregivers narrate their experience of dignity and violation in the context of nursing homes?
This qualitative Scandinavian study has a descriptive and explorative design based on qualitative individual research interviews. The overall purpose of this cross-country Nordic study was to gain further knowledge about how dignity is maintained, promoted, and neglected in nursing home residents through cooperation with residents, family members, health care personnel, and nurse administrators. A phenomenological-hermeneutic approach, inspired by Ricoeur (1976, 1981), was used to understand the meaning of the narrated text. This theory of interpretation includes a reading to gain a sense of the whole, followed by the identification of meaningful parts, as well as interpretations of meaning in the text as a whole. Narratives describe not only past actions, but how individuals understand those actions. Narratives are related to context and the process of interpretation is aimed at going deeper into the text, seeking a deepening understanding of the meaning of the human phenomena (Ricoeur, 1999).
This study is a part of a larger study (Nåden et al., 2013; Rehnsfeldt et al., 2014), which has been evaluated and approved by the Norwegian Ethical Committee and Norwegian Social Science Data Services and within the respective countries in Scandinavia. The family caregivers were recruited by staff nurses. All caregivers received both oral and written information about the purpose, content, and extent of the study, and written consent was obtained. Participation in the study was voluntary, and the anonymity of the participants and the duty of confidentiality were respected during the research process and publishing of the study results.
Setting and Participants
The study was conducted in six nursing homes: three in Norway, two in Sweden, and one in Denmark. Twenty-eight family caregivers were included in this study, all closely related to the residents. The family caregivers constituted 17 women and 11 men, were ages 47 to 89, and were either a parent, sibling, cousin, or spouse. The residents at the institution identified their family caregivers and were recruited by staff. The sample was homogeneous and purposive.
This empirical study is part of a larger Scandinavian study with a research focus on experiences of dignity from different perspectives of patients, family caregivers, and health care personnel. Data for this part of the study were collected from family caregivers by personal research interviews conducted by 10 researchers. The interviews, focusing on personal experiences of daily situations regarding dignity and indignity at the nursing home, were conducted from fall 2009 through spring 2010 and lasted between 30 and 90 minutes. The interviews took place in the nursing homes or at a quiet, private place that was most appropriate for the participants. The interviews were audio-recorded and transcribed verbatim. The interviews followed a semi-structured guide, focusing on the family caregivers’ encounters with health services, what they considered important in regard to dignity, and their experiences of how dignity was respected and handled at the nursing home (Table). Experiences involving violation of dignity and offenses were also discussed.
Hermeneutic analysis was performed inductively by 12 researchers. The interviews were read several times to obtain an overview. Substantial themes were written in the margin of the text. The purpose of the data analysis was to extract meaningful content from the family caregivers’ experiences.
Interpretation of a text moves forward from naïve understanding to deeper understanding of the text. The analysis was performed in several steps. In the first step (i.e., naive reading), the researcher attempts to understand the meaning of the whole text. The second step involves a number of structural analyses to grasp the most probable interpretation and explanation of parts of the text. At this level, comprehension is a mode of understanding. The final step is to obtain a comprehensive and understandable interpretation of the whole text, taking into account the naive reading and structural analysis toward appropriation (Ricoeur, 1976, 1981, 1999). The first author (V.L.) moved between different parts and the whole text. Throughout the analysis and the interpretation process, the research group discussed themes until consensus was achieved.
According to the narratives given by the study participants, most family caregivers spent several hours daily, or at least weekly, with the residents (i.e., patients living in the nursing homes). Therefore, they were frequent guests and observers of daily life at the nursing home, as well as participants in the inner life of the nursing home, sharing frequent experiences with their older family members.
In this study, the interpretations revealed two main themes:
Theme 1: One Should Treat Others as One Would Like Others to Treat Oneself
This comprehension, in accordance with the Bible’s Golden Rule (Luke 6:31, New International Version), which is similar in every culture, was bilateral, indicating that the family caregivers were using themselves and their own sensitivity to understand the residents’ experiences as if they were happening to them. Additionally, the family caregivers paid continuous attention to “the other,” meaning that the well-being of their relative was vital for their own welfare, which is also in accordance with the Golden Rule. From this inside perspective, the family caregivers also lived experiences of dependency at the nursing home. Through this insight, the family caregivers were forced to face their own vulnerability.
Several family caregivers explained human dignity as individuality and integrity. Dignity means respect and love, according to one study participant:
They [the staff ] do not need education to treat people with respect or to talk properly to others [the patients], it is just common sense. But health personnel without love for human beings should never be permitted to work here.
The Golden Rule is based on respect and love for the other. Dignity, meaning individuality as an inalienable human right in the context of vulnerability, was also narrated to be important as well as a decisive relational quality:
Dignity is a very complex phenomenon, having an inner as well as an outer or external dimension: Different individuals are not in need of identical dignity. Neither are their individual needs equal, but when they [residents] are feeling humble or exhausted they are in need of being appreciated and praised.
The Golden Rule is also based on individuality. Most participants experienced dignity on behalf of their relative as “feeling autonomous,” “being seen,” “being confirmed,” and “being heard” in a context of “predictability” and especially when the personnel did “the little extra on a voluntary basis.” According to one family caregiver, “dignity is safety and prosperity for both the residents and their family.” Several participants emphasized the importance of health personnel taking their time to “be conversation partners in a warm, friendly atmosphere.” According to this, human dignity was understood as “caring togetherness in a context of heartfelt acknowledgement, helpfulness, and confidence.” The Golden Rule is based on the conviction that although we are created uniquely, we still have equal needs. Common human needs revealed in the narratives are autonomy, safety, and acknowledgement.
Theme 2: Uneasiness Due to Indignity
Family caregivers usually experienced relief when their older relative was allocated a room at the nursing home, but later on, relief changed to frequent uneasiness. In one sense, the family caregiver constituted a bridge between the nursing home and the resident. This position was a major cause of uneasiness among family caregivers. The main concerns of the staff were running the system, carrying out daily routines, and taking care of their duties, whereas family caregivers continually focused on the daily life of their relatives. These different positions created conflicts among staff, family caregivers, and residents. From the position of the family caregivers, the needs of the older residents were not always met by staff, due to these different perspectives. The uneasiness was due to their continual concern for their older parent, sibling, or spouse and experiences on behalf of their relative concerning indignity or undignified care. The uneasiness was due to or provoked by violations of dignity, which caused the family caregivers to lose confidence in the service on which they were completely dependent.
Family caregivers likened the nursing home to an infinite waiting room, referring to situations of emptiness and feelings of loneliness. A daughter described her mother’s daily life: “She is just sitting here, hidden and lost.” According to the daughter, her mother felt “thrown away.”
Another participant experienced her mother as “being ignored, which made my mother feel very lonely.” Some narratives concerned inexcusable situations: “Sometimes when visiting, we would see that residents were suddenly about to stand up from their chairs. We knew that they recently had broken the neck of their femur. Our hearts were in our throats.” Situations involving waiting, such as when their relatives were “having to wait an hour for visiting the toilet because the permanent staff was too busy,” increased family caregiver uneasiness.
When the residents experienced being abandoned in the toilet or left alone in their room over time, family care-givers felt extreme uneasiness. Some unease was also due to the residents’ experiences of illnesses and medical treatments at the nursing homes.
Several family caregivers spoke on behalf of the residents about the residents’ situation. Experiences of guilt and despair sometimes overwhelmed the participants due to previous experiences: “How will she feel when we have left her, because in the beginning, she always wept when we were leaving? Did she want us to stay longer? Who is there to ask? Nobody knows.” In this regard, a son stated: “To be a family caregiver is like being continually frightened.” He visited his father every day to ensure himself that his father did not suffer. Nevertheless, the participant believed his father was suffering due to uncaring episodes. A daughter, suddenly taking on the role of her mother’s mother, was filled with sorrow due to the staff ’s lack of attention toward her mother: “My heart is crying.” Despite these feelings and situations, family caregivers had no choice other than “fighting the small battles.” At times, family caregivers were reluctant to ask about their relatives, “apprehending that her mother was spending too much time in bed,” which again induced uneasiness.
Different situations gave rise to different narratives of uneasiness. Unpredictability was a common source for uneasiness, such as when belongings were lost or promises were broken. “A lot of clothes disappear. And my mother should have had her hair cut. I believe that there is a little too much of absentmindedness.” This statement emphasizes the importance of the “little things.” Another common situation was lack of information, which caused the family caregivers uneasiness. Children of residents also experienced an extreme role conflict concerning intimate questions (e.g., the use of napkins for incontinence), which constituted reversed roles between the parent and child. Furthermore, conflicts and struggles with staff resulted in a strained atmosphere and paternalism, which again reinforced experiences of disappointment and uneasiness. Paternalism, as a destructive aspect of power, resulted in powerlessness and fatigue among family caregivers.
Yet, several family caregivers seemed to accept the fact that because they were in need of professional help and assistance for a parent or relative, they had to release their own right of self-determination as well as to endure some conflicts of interests. To conclude the findings, one daughter working as a health care professional gave this opinion: “Well, people often say that it is worse being a family caregiver than it is being a patient. And maybe this is true enough.” Family caregivers continuously worry about their loved ones while at the same time experience indignity on their behalf.
The aim of the current study was to explore and describe family caregivers’ experiences of dignity. A phenomenological-hermeneutic approach (Ricoeur, 1981) was used to reach a comprehensive and understandable interpretation of the narratives. There were some methodological limitations. Ten researchers from three different Scandinavian countries collected the data through personal interviews. Because of the large number of family care-givers, as well as the richness of the data, only one interview was conducted with each participant. Despite using a common semi-structured guide, the considerable number of researchers may have influenced the interview situations in different ways through individual focus of interest, age, gender, and nationality. However, Scandinavian countries are considered to have more commonalities than differences, including care of older adults and nursing homes. This was confirmed through the interviews as well. Analysis of the text was performed by 12 experienced researchers (two researchers were unable to participate in data collection), and the interpretations were shared and discussed. By including different Nordic countries and their respective nursing homes, the data from different contexts in Scandinavia strengthen the entire study’s theory-generating potential of the larger study, as well as the methodological approach (Lindholm, Nieminen, Mäkelä, & Rantanen-Siljamäki, 2006). Additionally, every researcher was experienced and educated in caring and nursing science.
The findings of this study revealed two main themes: Theme 1: One should treat others as one would like others to treat oneself; and Theme 2: Uneasiness due to indignity. Interpretation of the narratives regarding human dignity was understood as the scriptural command “Do to others as you would have them do to you” in accordance with the Bible (Luke 6:31, Matthew 7:12, New International Version). This Bible quotation is in accordance with the Golden Rule, which is similar in every culture and all religions. The narratives given by the family caregivers indicated situations of individual respect (i.e., being seen and confirmed), confidence (i.e., the little extra), security (i.e., safety and prosperity), and charity (i.e., a warm and friendly atmosphere), all values belonging to this scriptural command. In agreement with the International Council of Nurses (ICN) Code of Ethics for Nurses (2011), nurses should provide care that respects human rights and demonstrate sensitivity to values and safety.
The family caregivers’ comprehension of the concept of dignity was in agreement with central research on dignity within the care of older adults. The most common descriptions of inner and absolute human dignity among family caregivers were individuality, respect, and integrity, which are highlighted in the literature (Bredland et al., 2002; Cochrane, 2010; Dale et al., 2010; Edlund, 2002, 2003; Eriksson, 1996; Jacobsen & Sørlie, 2010; Nåden, 1999; Randers et al., 2004; Walsh & Kowanko, 2002; Woolhead et al., 2004). When the body loses its ability or capacity to meet its own demands, the need for help arises. In other words, a failing, fragile body challenges individual experiences of freedom and significance. Therefore, and in accordance with Edlund (2003), caring for these individuals requires accountability. Some narratives, however, accepted the antagonism from paternalistic care due to the older adult’s physical needs for help or fluctuating cognitive capacity and autonomy. In accordance with Christoffersen (1977), unconditional human dignity should not be affected by one’s ability to be independent. Who a person is can never be comprehended as a product of what the person concerned does. Basic equality among humans means that nothing makes one person more valuable than another. Human worth is absolute (Edlund, 2002), but the ability to make decisions is contextual (Jacobsen & Sørlie, 2010). The concept of autonomy is based on individuality and respect and is the most important value in caring (Nortvedt, 2012) and the basic assumption of the Golden Rule. Edlund (2003) also emphasized the importance of inner individual freedom and dignity when illness and suffering are inhibiting external dimensions of life. However, if this shift in perspective does not occur, contextual experiences will change from dignity to indignity (Edlund, 2003).
Concerning the relative aspect of human dignity, some narratives highlighted the desire for professional protection and kindness on behalf of both the residents and caregivers. The fundamental issue in the text concerning the caregivers’ desire for protection and kindness toward themselves or toward residents was not the actions themselves, in the sense of method or technique, but rather how, or in what way, activities were performed or carried out. The essence of the outside perspective pertained not to the tasks or obligations of the staff, but the way in which these duties were performed, referred to by the caregivers as the “little things,” yet carrying the meaning of the main things. The caregivers’ desire for emotionally sensitive care, in addition to technically competent performance of tasks, was also found by Duncan and Morgan (1994). Robinson, Reid, and Cook (2010) interviewed 29 family members who indicated the importance of creating a home-like environment. The need for belonging and being appreciated is basic to all humans. But when dependency on others seems to constitute a limitation of both freedom and autonomy, and when vulnerability is provoked by a system error such as paternalism and ignorance, the result is desperate loneliness and powerlessness (Jacobsen & Sørlie, 2010). System errors were frequently mentioned by study participants and were a main reason for their uneasiness.
The concept of uneasiness is understood as a form of suffering, such as discomfort in the body or mind, trouble, or anxiety, or as confusion, disturbance, interruption, worry, alarm, gnawing, apprehension, or a burden (Oxford Advanced Learner’s Dictionary of Current English, 1987). A qualitative study of nursing home residents’ lives uncovered significant suffering due to profound losses (e.g., loss of home, most possessions, privacy, control and capacity, activity and autonomy), which resulted in the loss of personal meaning among residents (Forbes-Thompson & Gessert, 2006). Experiences of sorrow, guilt, and despair were narrated by the participants in the current study. Patients and their families belong together in the sense that when patients suffer, their family caregivers suffer as well. Family caregivers experienced dependency and vulnerability due to relative aspects of dignity and indignity at the nursing homes. Uneasiness was also caused by observed incidents of disrespect and violation toward the residents at the nursing home. Such situations often resulted in different dilemmas, including situations involving anxiety, ignorance, and disappointment on behalf of their family member as well as feeling insecure about the staff. “Injustice creates mistrust,” according to Løgstrup (1991, p. 18). According to Hertzberg and Ekman (2000), poor relationships between family and staff seemed to occur when uncertainty and distrust arose between the two entities. Abrahamson, Suitor, and Pillemer (2009) examined the influence of conflicts between the nursing home staff and family members, which indicated that conflicts with family members increased staff burnout and decreased staff satisfaction. These studies indicate the importance of relationship-centered approaches to prevent the threat of a vicious cycle of distrust.
Nursing homes are professional health care institutions, encompassing vulnerability and dependency, which require complex ethical attitudes (Jacobsen & Sørlie, 2010). In the current study, which reports the perspectives of family caregivers, narratives involved ignorance, inexcusability, sorrow, and despair. Unpredictability and lack of information were common experiences, which provoked antagonism. Family caregivers had no formal power to make decisions, and they were all dependent on the system. Different types of relationships between family and staff were identified as collegial, professional, friendship, distanced, and stressful, or as collaborative or carative relationships (Austin et al., 2009). Relationships in caring should involve security, belonging, continuity, purpose, and significance (Nolan et al., 2004). The authors emphasized that family caregivers should be confident and maintain valued relationships as well as dignity and integrity.
Dialogical ethics involve a learning process in which participants require openness and engagement to acknowledge one’s own limits and to change interactions through development of new and richer understanding (van der Dam et al., 2011). Different types of relationships were identified and narrated by participants in this study. Relational ethics, or relative ethics (Edlund, 2002), involve attempts to understand the other’s situation, perspective, and vulnerability, and require a true engagement with the other (Austin et al., 2009). This may indicate a need for stronger ethical attention in nursing homes and an evident focus on dignity. Relatives may assume a responsibility that they do not want but feel obliged to take to ensure that their family member receives help. However, conflicts that arise may also be caused by misunderstanding (Dreyer et al., 2009). According to an extensive literature review, empirical research on ethics in nursing care for older adults seems to be fragmented, multifaceted, and focused on selected ethical concepts arising in particular areas rather than a fundamental knowledge base from which continuous development can proceed (Suhonen et al., 2010). The findings from the current study contributed to the identification of gaps in nursing knowledge and understanding, which might be of great contextual importance for the future. Few studies focus on older adults’ relatives, yet both patients and their families are part of the system in different ways. Therefore, the question regarding the role of the family in caring for their older relative should be addressed.
The current study of family caregivers’ experiences in the context of nursing homes highlights narratives on human dignity and uneasiness due to violation of this basic human right. According to family caregivers, dignity was maintained in situations that displayed respect, confidence, security, and charity, in accordance with the Golden Rule and in agreement with the ICN Code of Ethics for Nurses (2011). Uneasiness occurred when indignity was experienced, which resulted in conflict between the family and staff, usually on behalf of the residents. A main issue of the conflicts, from the perspective of the family caregivers, was the different types of relationships between staff and/or residents and attitudes of staff at the nursing home. Family caregivers are in a unique position to express their experiences from an outside perspective but within the context of the nursing home. Based on this study, it seems important to further investigate family caregivers’ experiences of uneasiness due to sorrow, guilt, and despair in nursing homes, to promote dignity and confidence in the care of older adults.
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- Walsh, K. & Kowanko, I. (2002). Nurses’ and patients’ perceptions of dignity. International Journal of Nursing Practice, 8, 143–151. doi:10.1046/j.1440-172X.2002.00355.x [CrossRef]
- Woolhead, G., Calnan, M., Dieppe, D. & Tadd, W. (2004). Dignity in older age: What do older people in the United Kingdom think?Age and Aging, 33, 165–170. doi:10.1093/ageing/afh045 [CrossRef]
|How did you experience the first weeks at the nursing home?|
|What do you think about visiting your relative at the nursing home?|
|Do you believe the relationship between you and your family member has changed since admission?|
|What do you think is most important in terms of your family member feeling comfortable at the nursing home?|
|What do you think is most important in terms of your family member not feeling well at the nursing home?|
|What are your experiences with the staff?|
|Is there anything you wish was different at the nursing home?|
|What kind of experiences do you have concerning daily care, cultural activities, physical conditions, and aesthetic conditions at the nursing home?|
|What does the word dignity mean to you?|
|Would you please tell a story about a situation that illustrates dignified care concerning your relative (or experienced by your relative)?|
|Have you ever encountered situations where your family member experienced indignity at the nursing home? Can you give any examples of undignified care, based on your own experiences?|
|Is there anything you would like to mention that was not shared in this conversation?|