Dignity in fragile older women receiving daily municipality care

Abstract

Background:Dignity is an important ideal in the nursing of older women who need municipal care. Dignity can be challenged when health is impaired by feeling grief and suffering associated with bodily changes and impaired functions.

Aim and research questions:The study aimed to deepen the understanding of the meaning of dignity in the life of fragile older women who daily needed help from municipal care service. The research questions are: What is older women’s experience of dignity, and what is it not to be met with dignity when needing service from municipality care?

Research design: The study has a qualitative design, and the methodology is based on Gadamer’s ontological hermeneutics. Ten women receiving municipal care, aged from 66 to 91 were interviewed in their home environments. Kvale and Brinkmanns’ three levels of interpretation were applied in the analysis of the interviews: self-understanding, a critical understanding based on common sense, and theoretical understanding.

Ethical considerations: The study follows the guidelines for good scientific practice according to the Declaration of Helsinki and was approved by the Norwegian Centre for Research Data.

Results: The interviews revealed fragments of the women’s unique life history. Two themes emerged from the interpretation: Confirming encounters provide human dignity; and Not being confirmed as a human being violates human dignity.

Conclusions:For the women, dignity is about feeling seen and understood by the individual nurse and this takes place both in conversation and in bodily care. Not being seen or confirmed gives rise to suffering. The reason for this seems to be lack of competence on the part of the staff or little continuity.

Introduction

The phenomenon of human dignity is an important ideal in the care of older persons.^1,2 In several countries, the public policy now dictates that dignity must become a focal point to prevent violation of patients by the care services.^3,4,5 The dignity of older persons is challenged when their health is impaired by feelings of grief and suffering related to bodily changes and impaired functions, the realization that life is coming to an end, and the loss of social relationships.^6,7,8 A vulnerability has appeared in their lives, and how caregivers enter their home and show respect for their lives and routines is of great importance as well as legitimizes the significance of being treated in a caring way with an opportunity to heal.^6,7 Human dignity is also a key concept in both human rights and nurses’ code of ethics and thus an ideal for practical nursing today.^9,10 Maintaining one’s dignity is essential in the care of older people because by experiencing dignity they can have a good life despite various losses. A key notion in caring is the focus on the vulnerable human being’s needs to be addressed in such a way that allows them to be in touch with their dignity.¹¹

Background

Patients’ experiences and perceptions of reviewing nursing care at home are described by Holmberg et al.⁶ The home is of great importance to patients as it represents security and independence and is the arena for their routines. To maintain the patients’ dignity, health care professionals must know their patients and show them respect. Dignity is promoted by letting patients be persons, by showing trust, and by letting them decide for themselves. As the nurse enters the patient’s home, there are expectations from both sides of the social interaction. The patient must deal with the ambiguity between accepting to receive care and maintaining independence and privacy. The result is described in terms of three main themes: to be a person with a unique individual, to have trust, and to have self-esteem. One of the solutions for the patients is to empower themselves in the meetings with the caregivers.

Andersson et al.⁷ have studied older people receiving municipal care and what constitutes a good life in the last phase of life. This phase was characterized by the importance of looking inward, making peace with the past as well as the present, and approaching death, while health problems increase. Several factors affect the quality of life in its last phase, including being and feeling at home and enjoying the little things in everyday life and trying to maintain the facade by not complaining, trying to do as much as possible yourself, and not becoming a burden for relatives. Furthermore, a good life is to be taken care of and trying to adapt to the new situation. The older persons reflect on the life they have lived and highlight what has given life meaning, and then turn their gaze gradually toward death. According to Martinsson et al.¹² older adults with mental disorders with extensive and complex needs represent a vulnerable group of people. The older adults fought to master their existence to be seen for who they are. They need a presence in the relationship that helps them rebuild their dignity and identity. Jansen et al.¹³ studied Dutch older adults who lived at home with help from the municipal health services and emphasized the importance of deciding for themselves but also receiving the service and care they needed. The older persons were not concerned with their weaknesses, and they wanted to remain active and full members of the local community.

Dignity and indignity are not new areas of research. However, a review of previous research shows that research is scarce on how older women experiencing frailty and living at home experience dignity in receiving health care from the municipality. Therefore, we found it relevant to explore what the meaning of dignity is for older women when their health fails.

Aim and research questions

The study aimed to deepen understanding of the meaning of dignity in fragile older women’s life when daily needed help from municipal service. To clarify what dignity is, examples where dignity is not promoted are also included. To capture the experience of dignity, the research questions were: What is older women’s experience of dignity, and what is it not to be met with dignity when needed care from the municipality service?

Theoretical starting point

This research has its basis in caring science as developed by the Finnish theorist Katie Eriksson.^14,15 The main idea in Erikson’s care theory is love and mercy, the alleviation of human suffering, and serving life and health. Human dignity is a fundamental value of caring and to unconditionally recognize the vulnerable human being is to confirm the human being’s absolute dignity.^11,16 The human being is created to be human and that means having a mission, an office that consists of managing oneself and one’s life. Regardless of how human beings choose to manage their lives, they are created as equals. The freedom to choose is the foundation. Without freedom, there is no dignity. At the same time, human beings have a responsibility to make their own choices and protect themselves from external, destructive forces, and to serve and exist for their fellow human beings.^16,17 Eriksson highlights the responsibility of the nurse with an ethical mantra: I was there, I saw, I became a witness, and I became responsible.¹⁸

The concept of dignity is a complex concept that has both a universal and a conceptual dimension. The universal dimension implies that humans have an inherent or absolute dignity precisely as human beings. Furthermore, dignity can be experienced contextually in various ways. Individuals can experience that dignity is strengthened or weakened in the encounter with fellow human beings.^1,18

Methodology

An exploratory interpretative design was used. Overall, Gadamer`s¹⁹ ontological hermeneutics was chosen as a methodology. The interpretation and the hermeneutic movement took place in the analysis, in the results themselves, and further in the discussion, where experiences of violated dignity are interpreted in relation to experiences of dignity. The understanding takes place when our prejudices and pre-understandings are challenged in the encounter with the interview-text. This leads to a new understanding through the interplay between the whole and the parts in the hermeneutic circle.

Setting and participants

The desire to conduct this study has grown out of experiences the first author has had in working with older people in municipal care. In some of the encounters with the older women, I have seen pride in their eyes. Despite having had demanding lives and having experienced great suffering, these women have struggled through such living conditions. I wondered if it was the case that by choosing older women who experienced frailty, I could take part in suffering stories and thus testimonies of dignity.

The study includes 10 older women ranging in age from 66 to 91 with an average of 82 years. The women had experienced municipal home care services for an average of 6.6 years, from 3 months to 10 years. One woman was married, seven women were widows, two were unmarried, and three did not have any children. The study took place in a city in Norway. A nurse in the municipal home care service asked the women to take part in the study voluntarily. The nurse contacted the women who met the inclusion criteria for the study. The inclusion criteria were having at least 2 months experience of receiving care in the municipality. The exclusion criteria were being unable to express oneself in Norwegian and/or being cognitively impaired. The included participants were 66 years old or older, living alone, and had a physical disease that required physical care at least twice a day. The first 10 women who agreed to participate in the study were included (Table 1).

Table 1.

Participant characteristics.

Participants	1	2	3	4	5	6	7	8	9	10
Age	77	66	91	83	81	78	79	90	84	91
Marital status	Un. m	Wid	Wid	M	Wid	Wid	Un.m	Wid	Wid	Wid
Children	Yes	Yes	Yes	No	Yes	No	Yes	Yes	No	Yes
Care from the municipal service	0,25 år	3 y	7 y	7 y	8 y	4 y	8 y	10 y	9 y	10 y

Data collection

Each woman was invited to participate in two interviews. The motivation for offering the women two interviews was a desire to become better acquainted with them. As the meaning and the concept of dignity may not be as clear to the women, it was important to make the women feel safe during the interviews. Seventeen interviews were conducted in the women’s homes. Three women were interviewed only once as they felt they had nothing more to say. The interviews were conducted by the first author of the article and lasted between 50 and 70 min. The interview guide worked well, and the dialogues were fruitful. The interviews were transcribed into 121 pages of text with rich and deep data. Open questions were used. These questions were: Please talk about how you experience aging and needing help from the municipal care service. Can you remember situations that have strengthened or weakened your experience of personal dignity? Through the women’s narratives, the themes relating to dignity emerged. According to Kvale and Brinkmann,²⁰ the interview had an open approach, where the researcher was careful not to violate the women’s dignity. The researcher’s ability to create a safe atmosphere was essential for making the women open up about dignity in their lives.

Analysis and interpretation

With each interview being read separately the hermeneutical interpretation process began. By putting preconceptions at risk, previous pre-understandings will come into play with something new, and a new understanding will gradually emerge. In a circular motion, the interview texts enter a dialogue with each other, and what is understood is written down. Reading can thus be an attitude towards life, as an infinite act of understanding expressed through the researcher’s openness and sensitivity. The circular interpretation follows Kvale and Brinkmanns²⁰ three levels of interpretation: self-understanding, a critical understanding based on common sense, and theoretical understanding. A first interpretation level is a form of condensed formulation of the interviewee’s viewpoints. These condensed viewpoints were given provisional thematic headings. Critical understanding in the process of interpretation goes further than the interviewee’s understanding and is based on common sense reasoning. The process of interpretation also includes a critical reading of the interview text and the inclusion of general knowledge of the content. This offers an opportunity to define more precisely the interpretation of what was first said. At the third level of interpretation, a theory is used as a framework in the interpretation of the text. Attention is directed toward identifying nuances and assigning preliminary themes through the reformulation of the themes that represent the results of the article Table 2.

Table 2.

Contexts of interpretation.

Level 1.	Level 2.	Level 3.
Self-understanding	Critical understanding based on common sense	Theoretical understanding
The nurses are fantastic … they are incredible … but when I constantly get new substitute nurses, it is very difficult for me. I have so many pains, and it is hard to explain to them, but the permanent nurses know what they need to do.	The woman is happy when the same nurses come to her.	To be seen and to be taken care of

Ethical considerations

Specific ethical considerations included the fact that the women were vulnerable and experienced frailty because of failing health and that they were dependent on help from others; family, friends, and the municipal healthcare services. We cannot rule out that they felt pressured to participate, even though none of them expressed it. To take care of the women, emphasis was placed on being responsive to how the women felt during the interview.²¹

The study was approved by the Research Ethics Committee at Åbo Akademi and storage and processing of personal data have complied with the Norwegian Centre for Research Data. The women gave their written consent after receiving written information from the researcher about their right to anonymity and confidentiality, and their right to withdraw from the study at any time, without this having any consequences for the help they received. At the beginning of the interview, the women had the opportunity to ask questions and receive oral information about the study.

Results

The experienced meaning of dignity in the meeting with healthcare personnel in the municipal services was revealed in the empirical data. The stories shared bear witness to and show the meaning of dignity as the women experienced it. The women are well into old age, have several illnesses, and depend on help from the municipal health care. In this context, they experience a great vulnerability that challenges their dignity. The women had examples of both confirming and non-confirming meetings with the municipal service, and of how human dignity is strengthened through the presence of confirmation and is weakened through violation and the absence of confirmation.

Confirming encounters provide human dignity

Confirmation points to the dignity that takes place in the encounter between the women and their nurses. The nurse’s voice, helpfulness, that she sees the patients in their vulnerability and frailty, is confirming and helps the women to come into contact with their dignity. Confirming encounters make them feel cared for and respected, as in the woman who feels that the nurse cares about and loves her and sees how much she suffers, so she feels well cared for and prioritized. It’s so good when they come to help me in the morning; they ask how I feel… and before they go, they hug me. I feel like they love me (10). Another told me that she got a little extra care on days that were difficult to get through, she straightens my hair a little and says, come on, I have time… She is so kind to me. It has meant so much to me. She says… it does not take more time. They do it without being asked (2). It is confirming when nurses are well prepared before the visit, when they know the woman’s background and state of health and are equipped to meet this woman. It is important that the nurse takes time to get to know the individual woman. Only then can they gain insight into how the patients feel, what they need, and what is important to them as individuals. As an exception, the woman had a period of fewer nurses to deal with, she said, I have found angels… they try to get everything to fit into the schedule and all. But when I constantly get new substitute nurses, it is very difficult for me. The permanent nurses know what they need to do, and they have helped me over the bend (2). When the regular nurses arrive, continuity is maintained, as the nurse knows the patient and her history.

It is also confirming when the women are treated by nurses who have the professional competence to take care of them when necessary. How practical and close-to-the-body care is carried out is of great importance in nursing for older persons. The women emphasized the joy of being cared for by knowledgeable and caring hands, it’s so good when they wash me properly and lubricate my dry skin afterward, I enjoy it… it feels so good to be touched (10). Another woman said that it could be difficult to receive help with intimate washing and when her secretions appeared to the nurses. She pointed out how good it felt when the nurses emptied the “chamber pot” next to the bed in the living room without her asking them to, or when they offered to clean her prostheses in the evening without showing dissatisfaction with the task. The nurse said that brushing teeth was part of the evening care, and he took responsibility for it, he took it for granted, and my respect for him increased (3). The woman added that tooth brushing was often forgotten. The need for competent staff was very important for those who felt insecure and had something unclear in relation to their health.

One of the women had many times experienced that when an acute illness arose the municipal health care would prioritize her and come quickly. Sometimes she had severe breathing difficulties or what she described as a galloping heart, and, therefore, had to call for help by pressing the alarm, they will come as soon as they can. I have severe heart disease and take a lot of medication, but I feel safe (4). She said she was happy with the help she received and that she felt that the home nursing took good care of her. The woman felt taken care of and confirmed. She had both inner strength and the ability to surrender to the helpers when they helped her. Getting to know the patients and bringing with them a professional sense of safety is important in the meeting with older people who experience frailty. But for those who had a more robust health, the young substitutes came into the home as a breath of fresh air.

Not being confirmed as a human being violates human dignity

Non-confirming encounters has much to do with not being seen or being allowed to be the unique person the human being is. It can be experienced as not being taken seriously or that the nurses do not care about the individual patient. Non-confirming encounters can be expressed in meetings with the nurses, but also through the absence of meetings as a result of the way the service is organized. This can have various consequences, such as not being taken into account in terms of embarrassment, natural care needs, or the individual person’s natural rhythm. It can also lead to little continuity in relation to staff, professional competence, or that the work culture is stronger than professional judgment.

Caring for older people is complex and the need for professional competence is great. The background of the employees was described as varied, there is a very big difference between them, it is not just nurses and auxiliary nurses, there are all kinds of people (5). One of the women explained that she had been bedridden with a high fever due to an acute urinary tract infection. Her night clothes and bedding were wet with sweat, and she asked the nurse who came in the evening for help with grooming and changing clothes. She was not confirmed, and the nurse said, in the evening we do not wash, it is only in the morning that someone is allowed to wash (5). The woman was ill and needed care. She needed to be taken care of, but the nurse followed the rules that she had learned; washing does not belong to the evening shift. The woman’s need for care was not taken care of. Instead of protecting her dignity, she experienced suffering.

One woman had just lost her husband and was having a very difficult time. In addition, she mourned a life that did not turn out as she had hoped, and she suffered from chronic pain. She constantly had to deal with health professionals who did not know her, and she had to tell them what she needed. She received help several times a day and the service was not organized with a view to continuity. As a result, she often had to inform them about what to do or otherwise train them in the tasks they were to perform. In addition, because there was much carelessness, she had to make sure that they did what they were supposed to do. She did not profit from making sure they did their job. Had those who knew her come instead, they would have known her story and she could have released the feeling of non-confirmation. She longed to be seen and heard by those who knew her and what she needed. Moreover, she was very shy, if an unknown (employee) comes I skip… I say today I am in so much pain, I feel so disgusting (2).

One of the women had struggled all her life with the after-effects of polio. She despaired that the symptoms that had been strong at a young age had returned in the form of weak muscles and breathing difficulties. She had all her life made an effort to take care of her health and now she had come to the conclusion that she no longer wanted to participate in the care. The male nurses respected this, while the female nurses were both busier and put more pressure on her to participate in the care. When the female nurses were to care for her, her wish was not respected. They did not take the time to listen to why she no longer wanted to take part in the care. Her life was about to move into a new phase, and she no longer wanted to fight. They did not see what was happening and dignity was not confirmed. Even though all the women were grateful for the help they received from the municipal health care, there were at times “collisions” between the nurses and their patients. One woman thinks there was a great deal of waiting, as the municipal nurse could not say exactly when the staff would arrive. She was dissatisfied with not being able to maintain the rhythm she previously had. Before she became ill, she had always liked to get up early and go to bed late. She felt great frustration at having to go to bed long before she felt tired, “when they come at eight o’clock and want to put you to bed, you know” (she expressed herself with indignation). Interviewer further asked when the woman want to go to bed, is “preferably at eleven o’clock, but ten o’clock is not so bad either (5).” The woman thinks that the care from the municipal care service could have been organized in a better way, something several of the other women also pointed out. The people who come are good, I have nothing bad to say about that, but it’s the system. You just have to accept it. I have learned that good planning can make women and men do unusual things. But, for some (those who organize the service) it is better with some hands than no hands (5).

The dignity of a person is ever-present in the person’s life, but through being confirmed by others who are present, individuals are helped to get in touch with their dignity. The confirmation of one’s dignity can take place in several ways; through practical actions such as in physical care or by respecting the person’s natural rhythm, or through meaningful meetings where the person’s vulnerability is considered.

Discussion

The women in this study are in a life phase that is characterized by frailty and impaired ability to take care of themselves. They are struggling to find a way to live with the suffering in line with how their lives had been before. This period in life is, according to Egge Søvde et al.,²² a landmark as it is impossible to escape it and life is on the verge of taking a new turn. The results show that for women, the struggle to live the life they had before is a struggle for dignity, at the same time as vulnerability becomes apparent. The meetings with municipal service that support human dignity and that are confirming take place both on a concrete level as in practical actions and on a more profound level that affects human well-being, and how human beings are present in the world. According to Nåden and Sæteren²³ and Bergbom, Nåden and Nyström¹⁶ touching the human being is an opportunity for the human being to develop and grow in dignity.

Confirmation appears central for experiencing dignity. The women expressed joy at how good if feels when they are seen and listened to, especially on difficult days. There is no need to say anything, and they know that the nurses understand. This resonates with a study by Lindström²⁴ and Nåden and Sæteren²³ who claim that confirmation means responding to the patient’s unspoken appeal and longing to be seen, understood and confirmed on a profound level. The good encounter can also manifest when the nurse does something extra and unexpected for the patients. The mental and physical presence creates space for care where the nurse meets the patient with the eye of the heart.²⁵ The nurse’s gaze is sensory when seeing the patient with the eye of the heart, simultaneously as she takes care of the observations that must be made to initiate measures. When patients feel secure that they will be cared for in the event of an illness, this is dignity. This is because when nurses take care of and confirm their patient, the patient’s desire to live for a while is respected. Confirmation is to respond to another person’s longing to be who she is with love, but it also requires the nurse to pause and be prepared to receive.²⁴

The results show that in order to maintain dignity it is important to be listened to, to put the suffering into words and get to know and be in the suffering so that it is gradually alleviated. In those situations where the women did not feel seen, the suffering could be both maintained and exacerbated. According to Lindström,²⁴ the person in the suffering is forced to put a lid on what hurts and can experience a feeling of being cut off from oneself and others. Being confirmed can evoke a deep longing for love and closeness. The caregiver takes care of the person. Nurses have the freedom to be true to their profession and take care of the patient and what the patient needs.

Many of the older people in municipal care live alone and this can lead to fewer opportunities for physical contact and touch. The women express that good care is important to them and how this is done is important. It feels good when the body is washed and cared for. This is often a time with the nurses when they feel seen. This is confirmed by Ozolins et al.²⁶ who reveal that care can have both visible and invisible meanings and help to alleviate the patient’s suffering when it occurs in a respectful and sensitive way. In the care, the nurse and patient can become closer to each other, and this may lead to the nurse becoming more aware of who their patients are and what they need. Taking care of the body is part of the care and there is a natural expectation in every human being to be confirmed. The women in this study refer to situations where the body is not taken care of in a proper way. They feel that they were not taken seriously. These are examples of suffering of care because patients suffer due to carelessness and lack of care. How the body is taken care of, for instance how bodily secretions are treated is important for the patient’s experience of being confirmed or not.

Continuity in the care service is important with regard to the experience of dignity. Nurses is to help older persons and their families to work through their crises, and it requires few and skilled nurses. It is extra important for the weakest patients who are unable to put into words what is bothering them. This is especially the case if there are constantly new members of staff coming and the patients are forced to explain things over and over.^23,24 The women wondered if the service could not be organized differently so that it could better meet their need for continuity. It is important that the nurses show respect for who their patients are and how they had lived before. Not knowing when the nurses arrive so that the patients constantly have to wait, or that they have to go to bed several hours before they want, creates great frustration for many. According to Holmberg et al.,⁶ the ideal for those who have been granted home nursing care is that a home should be a place for safety, independence and an arena for their own routines. This is challenged today and especially when the patient is in need of much help.^8,27,28 The consequences are that older people’s lives are constantly disturbed, and their private homes become a public arena. The need for more participation in decision making from the patients themselves is highlighted. The older persons can then regain control and experience the home as their own. Dignity for older women means being confirmed and listened to, who they are and what they need. The caregiver needs to be present, see, be a witness to and be responsible. Ultimately, it is about creating encounters that sustain life.

Conclusion and recommendations

This study has looked more closely at dignity in the light of older women’s experiences with confirming and non-confirming encounters in municipal care. Dignity for the women is about feeling seen and understood in the encounter with the individual nurse. Dignity is shown in the quality of the meeting with the individual nurse, both in the conversation and through touch in the care. Encounters that do not confirm break down and create suffering in the individual woman. The study’s recommendations are to highlight that older people need to be seen in every encounter with the nurse. It is also important to investigate in more detail how the work is organized. Continuity in care can contribute to a service that creates good encounters between the older person and municipal health care personnel.

ORCID iD

Kari Kaldestad https://orcid.org/0000-0001-9883-6065