Dignity in Care at the End of Life in a Nursing Home: an Ethnographic Study

doi:10.21203/rs.3.rs-1458421/v1

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Research Article

Dignity in Care at the End of Life in a Nursing Home: an Ethnographic Study

https://doi.org/10.21203/rs.3.rs-1458421/v1

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Background: Nursing homes (NHs) are populated by the frailest older people with multiple physical or mental conditions and palliative care needs. Although dignity is a commonly used concept, it has been claimed to be complex, ambiguous, and multivalent. Nevertheless, dignity is a core value of end-of-life care and is why this study aimed to explore aspects of dignity in older persons’ everyday lives in a NH.

Design: A focused ethnographic study design.

Methods: Data consisted of 170 hours of fieldwork, including observations (n=39) with residents (n=19) and assistant nurses (n=22) in a NH in a Swedish urban area. Open interviews were undertaken with residents several times (in total, n=35, mean 70 minutes/resident). To study dignity and dignity-related concerns, we used the Chochinov model of dignity to direct the deductive analysis.

Results: The study showed that residents suffered from illness-related concerns that inhibited their possibilities to live a dignified life at the NH. Their failing bodies were the most significant threat to their dignity, as loss of abilities was constantly progressing. Together with a fear of becoming more dependent, this caused feelings of angst and loneliness. The most dignity-conserving repertoire came from within themselves. Their self-knowledge had provided them with tools to distinguish what was still possible from what they just had to accept. Socially, the residents’ dignity depended on assistant nurses’ routines and behaviour. Their dignity was violated by long waiting times, lack of integrity in care, and deteriorating routines, but also by distanced and sometimes harsh encounters with assistant nurses. As the residents oin this study cherished autonomy and self-determination, while still in need of much help, these circumstances placed them in a vulnerable situation.

Conclusions: To protect residents’ dignity, NHs need to apply a palliative care approach to provide holistic care that comprises attending to personal, bodily, social, spiritual and psychological needs to increase well-being and prevent suffering.

end of life

ethnography

ethics

dignity

nursing home

palliative care

The older population of the world is growing fast and will grow even faster in the future [1]. Older people now tend to stay at home and receive support when needed for as long as possible. Therefore, nursing homes (NHs) are populated by the frailest older people with multiple physical or mental conditions and often have palliative care needs [1–3]. NH residents experience high symptom burden and psychological distress that may lead to hopelessness and sometimes a violated sense of dignity [4]. Preserving the dignity of NH residents is the responsibility of health care staff and is a core value of the palliative care philosophy [5, 6].

Dignity is a central concept in many regulatory and ethically aspirational documents. The best-known declaration to incorporate the notion of dignity is perhaps the 1948 Universal Declaration of Human Rights. The first article states: “All human beings are born free and equal in dignity and rights.” [7]. Later UNESCO declarations express similar principles, such as these: “Everyone has a right to respect for their dignity and their rights regardless of their genetic characteristics”; and “dignity makes it imperative not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity” [8, Article 2]. The declarations hold that all human beings are owed equal respect, irrespective of age, ethnicity, language, gender, sexuality or abilities. In healthcare, dignity likewise plays an essential role in many policies [9–11]. Respect for a person’s dignity is thus also central to NH care [12, 13]. Although dignity is a commonly used concept, it has been claimed to be complex, ambiguous, and multivalent [14]. Some scholars have analysed dignity conceptually [15–20], while others have empirically studied how patients, health care professionals, or students use the concept [21–24]. The term’s ambiguity has led some scholars to suggest that the concept has little ethical value, especially in health care, as a principle of respect for personal autonomy basically implies the same considerations [25]. In response, other scholars see dignity as having a “thicker usage”, more “closely tied to relational issues of upholding personal standards and avoiding humiliation”, and that it thus has “great relevance to medical ethics” [26, p. 160].

Nordenfelt argues that respect for dignity is essential in all human interaction, not least in the care of the elderly [15, 27]. Nordenfelt has distinguished four aspects of dignity: human dignity (Menschenwurde), dignity of merit, dignity of moral stature, and dignity of identity. Human dignity is described as being inherent to all human beings to the same extent and cannot be lost as long as the persons exist. The dignity of merit is dependent on social rank and position and exists in degrees and can vary over time. The dignity of moral stature results from moral deeds and can be reduced or lost through a person’s immoral deeds. The dignity of identity is tied to the integrity of the person’s body and mind, and, in many cases, although not always, is also dependent on each person’s self-perception. According to Nordenfelt, the dignity of identity aspect is the most significant in illness and ageing. NH residents are often struck with irreversible illness and disability. Disability and constrained autonomy further affect a person’s identity and thus dignity. Therefore, the dignity of identity is central to persons living in NHs because it can be shattered or lost by external events, disrespectful acts, illness, or old age. This kind of dignity can also vary over time and circumstances, or be promoted or taken away because of changes in body, mind, and situation [27]. Therefore, NH staff must act in ways that help to respect the older person’s sense of dignity and align with a person-centred care approach [28].

Suffering from illness and disability and old age may lead to a wide range of existential, spiritual, and psychosocial concerns, while experiencing dignity seems to mitigate the suffering associated with the end-of-life illness and death [29]. Nevertheless, respecting dignity might be a challenge because it is not explicitly clear what this requires in clinical practice.

Chochinov is one of few scholars who have developed an empirical model for how dignity can be applied in a palliative care setting, the so-called Dignity Model (DM) [30–32]. The DM aims to put the principles of dignity in palliative care into action and bolster the person’s sense of dignity by inviting the individual to reflect on matters of importance to them and address sources of psychosocial and spiritual distress [30, 33]. The DM intends to develop a comprehensive set of measures and to evaluate the quality of life of dying persons and the care they require regarding their physical, psychosocial and spiritual sources of influence. The model describes dignity in three broad categories: ‘illness-related concerns’; ‘dignity-conserving repertoire’; and ‘social dignity inventory’ and consists of 23 questions. DM also provides screening tools as guidance for health care staff to identify and provide suitable care regarding central physical, emotional, spiritual or social concerns, to avoid causing distress to persons with palliative care needs and their families.

Upholding the dying person’s dignity is a core value in end-of-life care. Thus, clarifying this would inform health care providers and educators to attend to and respect the dignity-related needs of older people with complex care needs. However, there is a scarcity of ethnographic research investigating the upholding of dignity in a NH context, and very little is known about using a dignity model to understand aspects of dignity from the older people’s perspective in end-of-life care. Therefore, in this study, we study residents in their daily NH setting by using an ethnographic method through participant observation and face-to-face interviewing as data collection.

Aim

The aim of this study was to explore aspects of dignity in older persons’ everyday lives in a nursing home.

Research questions:

In what way do older persons’ narratives describe aspects of dignity?

What dignity-conserving interventions occur in end-of-life care observations?

Design

This ethnographic and deductive study was based on participant observations and interviews inspired by focused ethnographic (FE) principles [34–36]. FE is a recommended research method in research involving older people [37] and palliative care [38] as it allows a deep understanding of a particular question and context and is carried out in an everyday setting.

Setting

NH residents and assistant nurses were recruited from a nursing home in a Swedish urban area. The nursing home had four accommodation units, comprising 32 residents in total. Each ward shared a standard living room and kitchen. The residents lived in one-room flats, and each resident had a private bathroom and kitchenette. The residential median length of stay was 17 months (range: 0.5–69, calculated from room-renting data from 2010–2017).

The NH was staffed around the clock. From 7am until 4pm, two assistant nurses served, and from 4pm until 9pm one assistant nurse served, occasionally assisted by an ambulatory assistant nurse. On weekends, from 7am until noon, two assistant nurses served, whereafter an assistant nurse served alone until 4pm. Two assistant nurses served all four wards during the nightshift from 9pm to 7am.

Participants and data collection

Bodily care was defined as help with (un)dressing, food situations, transfer, and personal hygiene. The inclusion criteria were ≥ 80 years, ≥ 2 diseases, assisted in daily bodily care, permanently living in the NH, and able to verbally communicate their experiences. Twenty-two residents were asked to participate, one did not want to participate in interviews, and two were excluded due to rapid cognitive deterioration during the data collection period. Thus, nineteen residents participated in the study. Twenty-two assistant nurses participated in the observations. In all, thirty-nine observations and thirty-five interviews (mean 70 minutes) were collected (Table 1).

Table 1. Participant characteristics of residents and assistant nurses at a nursing home

Respect for the participants’ integrity and diminishing strength was crucial during data collection. Several residents were interviewed on several occasions, for shorter periods of time. Therefore, some interviews were short and performed in conjunction with observations, whereas most of the interviews were longer and performed in privacy. An empirical question often used in a well-known dignity model is “What do I need to know about you as a person to take the best care of you that I can?” [39]. Because we focused on seeking insight into the older persons’ stories and narratives of their experiences of receiving bodily care, the following equivalent questions were used: “What is it like to be a resident here?”, and “How does it feel to receive bodily care?” Follow-up questions were used when suitable. The use of broad opening questions is typical when using a narrative data collection method, as it prioritises the storyteller’s perspective [40]. The storyteller controls the direction, content and pace of the interview, while the interviewer listens and avoids interruptions. Thereby, the meanings that the storyteller assigns to the story might be elucidated in the narrative.

In the observations, assistant nurses interacted with the older persons. The first author was observing, interacting socially, but without participating in the bodily care procedures [41]. A two-part protocol was used in the observations. The first part described demographic data (location, time and date), and the second part described the observations in free text. While observing, the first author took notes. Fieldnotes were then written into a consistent text immediately after the observations [36]. The study took place for six months in 2017, corresponding to 170 hours of observations in bodily care situations, and took place during both the day and at night. The free-text observations/data to be analysed comprised 68 pages (A4) of single-spaced text. The first author fully transcribed the interviews. The interview-data to be analysed comprised 356 pages (A4) of single-spaced text.

Theoretical frame and data analysis

A deductive content analysis [42] was carried out, based on the model of dignity proposed by Chochinov [31]. The dignity model (DM) aims to improve patients’ sense of dignity, purpose, meaning, and self-worth and reduce psychosocial and spiritual distress. The model describes dignity in three broad categories: ‘illness-related concerns’, ‘dignity-conserving repertoire’; and ‘social dignity inventory’, guided by 23 questions (Table 2). The questions address those aspects of life that patients asses as being the most meaningful in relation to their experience of dignity. To theorize the DM model, we lean towards the descriptions of human dignity, as presented by Nordenfelt above [27]. As human dignity is an umbrella concept that is difficult to operationalize, we argue that issues concerning dignity of identity are processed through the DM model’s questions 1–5, issues concerning dignity of merit are processed in particular through the DM model’s questions 3A–C, while issues concerning dignity of moral stature are processed in particular through the DM model’s questions 3G and 5D.

A categorisation matrix was developed in line with Chochinov’s dignity model [31]. In the matrix, the original model’s questions and calls, designed to be posed directly to dying persons and their careers, were slightly modified in order to be posed in written text.

The analysis started with BH thoroughly reading all interviews and observations to obtain a sense of the whole and to become familiar with the data. Answers to the matrix’s questions and screening tools were searched for in the data. Textual aspects replying to each unique question and its related screening tools were identified in data and placed in datasheets, one for each matrix question and its related screening tools. The categorization of data then followed the structure of the matrix, resulting in the three main categories and four sub-categories presented below. BH analysed interview data and TG analysed the observations in line with the structured matrix.

Table 2. Chochinov model used for deductive analysis

A Model of Dignity and Dignity-Conserving Interventions for Patients Nearing Death
	Factors	Dignity-Related Questions (interviews)	Therapeutic Interventions (observations)
Illness-related Concerns
1.Symptom distress	A. Physical distress	How comfortable is the person?	Is there vigilance to symptom management? Is there a frequent assessment? Is there application of comfort care?
	B. Psychological distress	How is the person coping with what is happening to him/her?	Is a supportive stance assumed? Is there empathetic listnening? Is there referral to counseling?
	C. Medical uncertainty	Would the person like to know anything further about his/her illness? Does he/she have all the information that he/she feels is needed?	If requested – are accurate, is understandable information and strategies to deal with possible future crises provided?
	D. Death anxiety	Would the person like to discuss things about the later stages of his/her illness?
2. Level of independence	A. Independence	Has the illness made the person more dependent on others?	Is the person participating in descicion-making, regarding both medical and personal issues?
	B. Cognitive acuity	Does the person have any difficulty with his/her thinking?	Is delirium treated? When possible, are sedating medications avoided?
	C. Functional acuity	How much is the person able to do for him/ herself?	Are orthotics, physiotherapy and occupational therapy performed?
Dignity-conserving Repertoire
3. Dignity-conserving perspectives	A. Continuity of self	Are there things about the person that disease does not affect?	Are those aspects of life that the person values the most acknowledged? Is the person seen as worthy of honor, respect and esteem?
	B. Role preservation	What were the most important things the person did before illness?
	C. Of pride	What about self or life is the person most proud of?
	D. Hopefulness	What is still possible?	Is the person encouraged and enabled to participate in meaningful or purposeful activities?
	E. Autonomy/control	How in control does the person feel?	Is the patient involved in treatment and care decisions?
	F. Generativity/legacy	How does the person want to be remembered?	Is the person active with life projects (making videotapes, writing letters, journaling)
	G. Acceptance	How at peace is the person with what is happening to him/her?	Is the person supported in his/her outlook? Is the person encouraged to do things that enhance his/her sense of well-being (meditation, light exercise, listening to music, prayer) ?
	H. Resilience/fighting spirit	What part of the person is strongest right now?
4. Dignity-conserving practices	A. Living in the moment	Are there things that take the person’s mind away from illness and offer comfort?	Is the person allowed to participate in normal routines or comforted in momentary distractions (daily outings, light exercise, listening to music)?
	B. Maintaining normalcy	Are there things the person still enjoys doing on a regular basis?
	C. Finding spiritual comfort	Is there a religious or spiritual community that the person is or would like to be connected with?	Are referrals to chaplain or spiritual leaders made? Is the person enabled to participate in particular spiritual and/or culturally based practices?
Social Dignity Inventory
5.	A. Privacy boundaries	What about privacy or body is important to the person?	Is permission asked to examine the person? Is draping done properly to safeguard and respect privacy?
	B. Social support	What people are most important to the person? Who is the person’s closest confidante?	Are there liberal policies about visitation?
	C. Care tenor	Is there anything in the way the person is treated that undermines his/her sense of dignity?	Is a stance where the person is treated as worthy of honour, esteem and respect adopted?
	D. Burden to others	Does the person worry about being a burden to others? If so, to whom and in what ways?	Are explicit discussions about these concerns with those they fear they are burdening encouraged?
	E. Aftermath concerns	What are the person’s biggest concerns for the people he/she will leave behind?	Are the setting of affairs, preparation of an advanced directive, making a will, funeral planning encouraged?

Consideration of rigour

In establishing rigour in this study, the criteria for trustworthiness described by Lincoln and Guba were used [43]. Both researchers scrutinised each other’s perspectives and clarified interpretations throughout the analysis process. The manuscript was reviewed by other researchers at a seminar. Also, an external check on the preliminary findings and interpretations was performed, with the help of a group of stakeholders consisting of one person > 80 years, one assistant nurse, one nurse working in a NH and one manager of a NH, who read the results and provided valuable insights on aspects important to elucidate in the study discussion. This may have increased the study’s credibility. A thick description of findings and detailed use of verbatim quotes assured transferability. Dependability was reached by the transparent documentation of each step taken, from the start of the study to the analysis and reporting stages. Reflexive handling of all choices made by the researchers further established confirmability.

Illness-related concerns

The illness-related concerns sub-category included problems that threatened or influenced residents’ experiences of dignity. It was separated into two parts: Symptom distress, and Level of independence. The results are illustrated by quotations (Q) drawn from interviews and observations, presented in Table 3 and referred to by their respective numbers in the text.

Table 3. Exemplar quotes from the interviews with NH residents

Q1-1A – I’ve lost my spark today, I couldn’t get up for lunch. It just couldn’t do it because I was so tired that I just wanted to lie down and sleep. My body is exhausted, all the joints and muscles and . . . everything. Goodness me, what pain I am in.

Q2-1B – Life goes on, well sort of. I don’t get involved as much these days, I feel like I am done with life. Sometimes you are sad, but mostly you are quite . . . well, empty. It has just got to end.

Q3-1B – Resident: I’m dying. USK: No, who has said that? R: I have. USK: leaning over the bed, asks: Do you feel unwell? Or just feel old? She speaks calmly and allows long pauses. R: I’m scared. USK: I understand. You can only take it one day at a time, can’t you?

Q4-1C – I think I’ve been quite healthy actually, so why did I have a stroke now, I don’t understand? I took my Wafarin and had staff that gave it to me, so I didn’t miss any. I don’t understand what happened.

Q5-1D – When you die, you are just gone, completely wiped out. I don’t think about it; I never do, that’s so sad. I don’t like that I will die and not exist, but I’m not scared. It is what it is.

Q6-2A – Now they are moving me. I sit in that (points at wheelchair) I can’t get anywhere.

Q7-2B – You forget bits and pieces. Now I have started to get so old, so there are lots of times when I forget what I want to say. Sometimes I have to ring my daughter and ask.

Q8-2C – I feed myself, even though I need to have a knife, fork and spoon, because if I have to use this hand (holds up the left hand), I get all shaky. So, I cut the food first, then I take the spoon and push the food onto it.

Q9-3A – I think I’ve been like this my whole life so it hasn’t changed a bit. I have been used to making decisions. So you have to make decisions on how you have it here (at the home) too.

Q10-3B – My son died in 1994. The doctor said that we will be able to sort it, but they didn’t. I can hardly explain, it was so terrible. It was the same when my husband died, but a child is very hard to lose. He was in his 50s, but still . . . .

Q11- 3C – They come in, so I get to empty (the stoma). They haven’t seen this sort that I have, so I have to tell everyone about it. Him last night said that I told him exactly how he should do it (smiles and chuckles). They have to learn what to do.

Q12-3D – What is nice sometimes is when the staff sit with us for breakfast. In the evenings it can be that some of them have a sandwich and a coffee when I sit (alone) out there. That is nice and enjoyable, so we can talk.

Q13-3E – I just lie there, I can’t do anything. I am like a vegetable when I lie there (chuckles), like a parcel that can’t move itself. That is really how I feel.

Q14-3E – The assistant nurse helped me with a bra I was annoyed with. It bothers me that I can’t do it myself. I can’t control my body. I feel upset and annoyed that I can’t control necessary things. It feels degrading.

Q15-3G – I don’t like needing help, but I’m grateful that there are people that can help me go to the toilet.

Q16-3H – It happens sometimes that I drop the grabbing tongs, but then I do this (glides forward on the wheelchair seat, then sits on the edge and bends forward to reach the floor). I have done this many times. If I am lucky, I can reach it then.

Q17-4A – On Sunday, I had an old colleague here with me. It was so incredibly enjoyable! At night I laid down and thought of lots of things, because that’s how memories come to life.

Q18-4B – I want my door open most of the time, I like to watch people go past.

Q19-5A – I don’t want any of the men to see naked. Absolutely not! It feels very uncomfortable.

Q20-5B – Points at a photo of their daughter. She is my comfort now, she does everything for me. She is all I have.

Q21-5C – I feel like some kind of cattle. In some way it feels a bit impersonal, when you just like come along like sheep and just stand there and let them keep on rubbing in soap and showering you.

Q22-5C – Yesterday when I was brushing my teeth, I was made to sit on the toilet. I thought – now this has gone too far! To sit and spit into a little bowl, that’s awful. It feels like I am about as much worth as a . . . as a pig!

Q23-5C – The girls come in while I am sitting in front of the TV and say: ‘Shall we put you to bed now?’ You are tired . . . . So I go to bed. They never complain, but I FEEL like they want me to go to bed so they can just get finished.

Q24-5D – You adapt to the toilet visits , otherwise you have to get help all the time. I think it’s enough if I get help to the toilet 4 times a day. That’s enough. I do that for everyone that works here, people like it if we cooperate and I just go with the flow. You don’t want to disturb people all the time when they are running around like crazy.

Symptom distress: 1A–D

The residents often suffered from bodily distress, such as tiredness, pain and loss of functions, that isolated them from socialising with other residents (Table 3, Q1). Aid equipment provided some comfort but did not always fit the resident and sometimes hurt. The assistant nurses provided comfort care by using various types of lifting aid equipment and putting pillows in strategic places.

The disease progression and loss of abilities caused boredom and dependence on others that psychologically threatened residents’ sense of dignity. For example, the loss of vision and hearing made them lonely and the unpredictable body caused psychological stress and a state of vulnerability. These problems could make life feel meaningless (Q2). Some residents coped by accepting their situation, being patient, and reminding themselves of the privilege of living in a safe environment. Others were resigned to angst and rumination or coped by remaining attentive, trying to plan and control assistant nurses’ work. Residents’ negative feelings were reinforced by a sense of inferiority and fear of annoying staff, especially when a lack of empathy was perceived. When residents mentioned feelings of anguish, assistant nurses were seen to listen and pose probing questions (Q3). Alternatively, they started to sing or make a joke.

There was a lack of information provided to residents. They expressed ignorance about medication and carried with them questions regarding the origin of their diseases and new symptoms (Q4). The residents did not know why the physiotherapist did not show up for training, why some food had been replaced, or why the physician had seponated certain medication. On the whole, they desired more health controls, but felt that the nurse was difficult to come in contact with. This made residents feel neglected, which threatened their dignity. The assistant nurses were not seen to perform any regular check-ups on pain or other health problems. The residents did not express feelings of death agony, nor did they have a wish to talk about later stages of their illnesses. However, in the interviews, they openly shared their thoughts about nearing death. They talked about their existence as being at the final station. They expressed this as being sad, but still natural, as there is no future when being old. Being old was described as something unpleasant and hopeless that threatened their dignity. Some residents wished to die on the spot to reduce further suffering. Others avoided thinking or talking about dying (Q5), but expressed a fear of becoming more dependent. Some were hopeful and curious about dying, as they looked forward to reunite with their dead loved ones. The assistant nurses were not seen to provide any strategies for future crises.

Level of independence: 2A–C

The progressing illnesses threatened residents’ dignity by increasingly making them dependent on others for help with transfer, transportation, personal hygiene, clothing, hair care, eating, medication and regulation of bowel function (Q6). They were also dependent on assistant nurses’ support when interacting with others, as they were increasingly losing their ability to socialise. In care situations, the assistant nurses were seen to support residents’ decision making by asking about their personal preferences. On the other hand, they were also seen to negatively influence residents’ dignity by neglecting their desires concerning clothing or the timing of care interventions. No discussions concerning medical decisions were observed.

The experience of cognitive acuity varied among residents. Some claimed to have a clear mind, thus instructing assistant nurses and interacting with family and friends, while others perceived themselves as increasingly inert and forgetful (Q7). They described difficulties in collecting their thoughts and in understanding instructions. This made them feel stupid, wondering whether they were at the early stages of a dementia disease. No treatment of delirium was observed, other than the distribution of sleeping pills and medication to prevent anxiety.

Some residents had a high degree of functional acuity, while others were restricted to such self-management activities as combing their hair or brushing their teeth. The residents noticed when their skills deteriorated, and they practised to get better, or found alternative ways to reach their goals (Q8). Assistant nurses were seen to call for physiotherapists when needed and they also performed regular exercise sessions at the ward.

Dignity-conserving repertoire

The dignity-conserving repertoire included strategies to mitigate concerns that threatened or influenced patients’ experiences of dignity. This sub-category was separated into two parts: Dignity-conserving perspectives, and Dignity-conserving practices.

Dignity-conserving perspectives: 3A–H

Residents described how they retained a variety of personal characteristics that seemed unaffected by disease. While some struggled with shyness and low self-esteem, others described themselves as being social and humorous. On the whole, they presented a high degree of self-awareness that seemingly helped them to define who they had been, and who they still were. Thus, disease did not affect their degree of religious beliefs, humour, psychological stability, self-esteem, ability to enjoy esthetic aspects in life, or decision-making capability (Q9). As grounds for this role preservation, they mentioned the impact of their childhood, happy or unhappy marriages, life in wealth or poorness, and losses and conflicts they had experienced (Q10). They also mentioned important hobbies, such as sports, dancing, travelling, cooking and needleworking. Some described life’s setbacks as natural challenges, while others were disappointed and felt unfortunate. However, they were proud of having coped independently and with endurance. Further, they were proud of their children, their own careers, and the talents for which others had credited them. At the nursing home, they were proud of having managed to rehabilitate after fractures, of still being active, i.e., by solving cross-words, knitting or nursing plants. They also took pride in being able to teach assistant nurses how to perform complicated medical measures and enjoyed seeing objects they had crafted with their own hands (Q11). The observations showed that assistant nurses respected residents by listening when they signalled their need to talk, by asking for residents’ preferences on care, and by doing appreciated things, such as nail care. The assistant nurses were also seen to neglect highly valued aspects of residents’ lives, i.e., when denying them help with their plants.

While living in a nursing home, residents described how it was still possible to be stimulated by socialising with others, participating in arranged activities, and performing physiotherapy in a hope to regain abilities. It was still possible to decide what clothes to wear, when to have a haircut, and independently perform certain parts of the bodily care. Some looked forward to the rare occasions when assistant nurses took them out for a walk or sat down to talk (Q12). It was still possible to be creative by doing needlework or listening to music. Listening to radio and watching TV were described as positive possibilities, as those activities made time pass. In the observations, assistant nurses brought residents to activities such as group exercise sessions, dance events, and bingo sessions.

Residents with low functional capability described having no control. They were limited, supervised and locked in, treated like a package with no impact on life (Q13). All residents experienced functional limitations, which made them feel unsuccessful and humiliated by their own bodies (Q14). Some residents found it possible to steer assistant nurses and get their own way through humour and by having a good attitude, provided they were alert and had had a good day. Having a wheelchair meant freedom to some, as it allowed them to come and go as they wished. One way to gain control of their existence was by adapting to the ward’s routines, i.e., visiting the toilet when knowing that assistant nurses had time. They described their own room as a place of self-determination, a refuge dedicated to relaxation. In the observations, residents were not seen to be involved in discussions concerning treatment, and they were not always asked about their preferences on care.

None of the residents mentioned how they wanted to be remembered, and they were not observed being active with life projects such as making films, writing letters or journaling.

When being old and unable to control the body, residents claimed it to be necessary to become at peace with their help-needs and make the best of the present (Q15). They were at peace with using transfer equipment, as they did not want assistant nurses to get hurt by helping them. They accepted having plain hairstyles as assistant nurses did not have the time to help them, and they wore comfortable, pyjama-like clothes, as that made assistant nurses’ work easier. Living in a nursing home meant being safe, looked after by kind and polite assistant nurses, and having plenty of time to spend on oneself. Thus, being this old and at the end of life, existence could not be better. The days were dull and residents missed having someone to talk to, but at least they had some company. The strongest characteristics of residents were their inner qualities. They had feelings of being good enough, for others to accept. They had a strong urge to manage independently and sought clever solutions to everyday challenges, in order to remain as independent as possible (Q16). The observations did not convey encouragement regarding residents’ personal interests. What was offered, were the activities arranged in the ward. Assistant nurses were seen to arrange appointments at the hairdresser when residents asked for it, but on a daily basis, assistant nurses often arranged hairstyles and chose clothes for the residents without asking.

Dignity-conserving practices: 4A–C

Social events, such as dancing, exercise sessions, outdoor walks and visits from friends and family, took residents’ mind away from illness and offered comfort (Q17). Having coffee with others, joking and engaging in deep conversations worked the same way. Having tasty food, home-baked cookies and occasionally a little glass of whisky, brightened up life. A visit to the hairdresser was much appreciated, as that was a moment of personal attention. Another way of getting away from illness and boredom was to try to sleep as much as possible. On a more regular basis, residents enjoyed their weekly shower and its opportunity to get clean. Getting up in the morning and being able to watch other people were other daily amusements (Q18). Daily activities, such as reading papers, knitting, and day-dreaming in their own rooms were appreciated. The observations showed common meal and coffee times, but also residents who sat alone and outside the reach of the ongoing conversations. There was nothing such as daily outings.

No residents expressed a desire to be connected to a religious or spiritual community. Few viewed themselves as religious, but, on the other hand, they did not deny the existence of a God. Nevertheless, if life in the nursing home would get too difficult, they would pray to God to let them die. The observations did not show any spiritual practices, but assistant nurses were seen to practically help residents who wanted to vote in a church election. Cultural practices such as musical arrangements were offered.

Social Dignity Inventory

5A–E

The residents had been raised to cover the private parts of their bodies. This had made it important to avoid being naked in front of a person of the opposite sex (Q19). They were also taught to take care of their personal hygiene independently, which was why they strived to participate in their bodily care. Therefore, losing the ability to use the toilet was described as the worst thing that could happen. To ease embarrassment, they desired to be informed before care actions took place. No observations showed assistant nurses asking for permission before examination or assistance, but they did inform residents of their intentions before or while performing them. Respect for integrity was lacking, as toilet doors were left wide open when residents sat naked on the toilet or in the shower.

The residents’ children were described as being their closest confidantes, who provided valued company and comfort (Q20). Their children were trusted to run residents’ finances and buy their clothes. They also made the residents’ rooms homier and were described as being important providers of care. In the observations, residents’ children were seen at various times, as visitation policies were liberal.

The residents were often waiting for help, which could mean that they wet themselves. Long periods of waiting for help made them feel like children, and having their bottoms wiped by someone from the opposite sex evoked feelings of being disgusting. Dignity was undermined when assistant nurses denied providing the desired help and when they asked residents to try it themselves first, as if they had not already. Understaffing of assistant nurses led to inhibited practice and few outdoor-walks, and some residents could not remember the last time they had been outdoors. Insufficient staffing restricted residents’ opportunity to shower once a week, which was considered too little. For practical reasons, residents sat on the toilet seat while showering. This was humiliating, as they did not enjoy washing in the same place where they empty their bowels or bladder. Further, the strict shower routines made showering feel unpersonal (Q21). Clothes were not washed at the desired rate, thus residents felt filthy. Assistant nurses were always in a hurry, which had caused fall injuries and fear of falling. Further, it made residents with extensive care needs feel neglected, while residents with less needs felt abandoned and lonely. The way work was organised could make residents feel devalued (Q22), but they did not complain, as that had rendered them sharp admonishments from assistant nurses. The assistant nurses’ stance was described as being mentally distanced and exhortative, such as when they told residents to go to bed (Q23) or reprimanded them for overusing the alarm clock. This made residents feel supervised and denied their empowerment. Residents suffered when they heard assistant nurses’ mutual complaints about their body weight, and were humiliated by assistant nurses’ use of gloves when washing their faces. When the assistant nurses were in a bad mood, residents noticed a poor atmosphere and a more reckless care, which made them feel devalued. Likewise, they felt devalued when assistant nurses disbelieved them of being in pain, or when they passed on information that residents had entrusted them in confidence. The observations presented situations where assistant nurses respected residents’ desire to sleep a bit longer, and when they hugged them or performed things they had asked for. They also revealed situations when assistant nurses talked over residents’ heads, neglected what they said, neglected to perform oral care, omitted to wipe residents’ bottoms after micturation, or left residents in the middle of care without telling them why they had left, or when they would come back.

Residents feared being a burden to others, as that felt like being vicious. They felt guilt towards their children, whom had already helped them so much. They excused their children for not visiting more often, as they had their own lives to live, with families to care for. Residents also hesitated to disturb assistant nurses, because they could see how much they had to do. When having to ask for help, they felt like a nuisance. They tried to restrict their demands, especially in the mornings and evenings, when all residents needed help simultaneously. Thus, they accepted having to eat cold food and tried to regulate their bodily needs (Q24). They also tried to ease assistant nurses’ working situation by being jovial, to help them thrive at work. The observations revealed the residents’ desire to unburden assistant nurses, and their will to wait if necessary. No observations showed assistant nurses initiating or encouraging conversations about residents’ worries about being a burden to others.

Except for desiring all the best for their children, no residents expressed any concerns about their passing. Neither did the observations show any concerns about planning for after their death.

The results showed that residents suffered from illness-related concerns that inhibited their possibilities to live a dignified and social life at the NH. The results pinpoint residents’ failing bodies as the most significant threat to their dignity. The constantly ongoing loss of abilities, together with a fear of becoming more dependent, caused feelings of agony, loneliness and meaninglessness, which is in congruence with earlier research, describing the loss of autonomy as a worry to residents [44], as persons who live in the interaction between suffering and health strive to find dignity [45]. More precisely, this exemplifies residents’ loss of dignity of identity, as disease and disability threaten to demolish their self-respect and humiliate them [27]. Different personalities coped in different ways, but they did not get needed support from assistant nurses, who were described as always being in a hurry. Empathetic listening occurred when residents needed help to cope, but they were also met with a lack of empathy or jokes. Humour can be used as a tool to even out inequalities and create connections between people, thereby playing down feelings of vulnerability by pointing at the absurdity of a situation [46]. This might work, but only provided it is used based upon knowledge about how the resident perceives the situation. Humour can also be used by assistant nurses as a means to avoid involvement in existential conversations [47]. Further, it may indicate an ageistic approach, where assistant nurses use humour as a socially acceptable form of discrimination to circumvent residents’ requests when believing themselves to know what is the best practice [48]. As the results demonstrated, because residents felt inferior to assistant nurses, further doubting their own cognition, they were not likely to object if humour was used in a derogatory way. In congruence with this, earlier research shows that residents try to maintain a façade of normality and not complain as a means to preserve their dignity [49]. This may explain why the residents of this study carried with them questions of their diseases and treatments that they seemingly did not pose to anyone. It may also explain why the residents did not talk about their fear of being a burden to others.

Although residents’ bodies were the largest violators of their dignity, it seems as if the most dignity-conserving repertoire came from within. It was apparent that residents had different personalities, coloured by their previous lives. Despite that, they were proud of having coped independently and with endurance. Their acquired perspectives of self-knowledge seemed to have provided them with tools to distinguish what was still possible from what they just had to accept. Thus, even those who had extensive care needs and no control of care found ways to escape negative thoughts and find meaning in everyday life. This ability may result from an inner creativity, helping residents to remain self-dependent, even as their bodies fail [50]. In compliance with research performed on younger people with multiple sclerosis, residents in this study appeared to have found dignity by accepting disease and deterioration with a fighting spirit [51]. Further, the residents of this study took pride in what they had achieved and what they could still do. This is positive, as the dwelling in pleasant memories, the uphold of interests and the maintenance of curiosity regarding how to keep the zest for life on the basis of individual prerequisites can confirm residents’ dignity [52]. As all residents were retirees, they no longer had the dignity of merit connected to their position in society. However, we suggest that their daily challenges with patience and insight, stemming from lifelong experiences, reveals them to possess the older peoples’ specific dignity of merits. This type of dignity, according to Nordenfelt, assumes the wisdom of life that only a person who has lived a long life can achieve [27]. This wisdom generates knowledge of human life in general and helps older persons to solve practical problems because they have solved similar problems before. Although their intelligence and experiences may vary, they all have this type of dignity by virtue of their high age. Residents’ work with upholding their inner dignity-conserving perspectives was little supported by assistant nurses, who were busy performing practical tasks. This underlines the notion that the residents and assistant nurses in this study did not share the same reality, although they coexisted under the same roof. This may be explained as organisational demands being in conflict with the levels of nursing care needed to meet residents’ personal needs and interests [53]. The results of this study show that the only dignity-conserving practices that assistant nurses provided were those offered as part of the ward’s routines. This may threaten residents’ dignity, as not getting help to maintain a sense of personal self can result in feelings of being unseen and erased as a person [54]. Therefore, the activities offered at nursing homes need to become more individualised.

Socially, the residents’ dignity was much dependent on assistant nurses’ routines and behaviour. As the results show, their dignity was violated by long waiting times, lack of integrity in care and deteriorating routines, but also by distanced and sometimes harsh encounters with assistant nurses. As the residents of this study cherished autonomy and self-determination, while still being in need of much help, these circumstances placed them in a vulnerable situation. Having dignified treatment is vital, as being free from pain, dressed in clean clothes, treated with respect for privacy, and getting human contact is central to the experience of dignity [54]. Further, the attitudes of assistant nurses are vital for dignifying care, as a good encounter and respectful manner enhance dignity [55]. Here, the results of this study provide a long line of examples of when residents’ dignity of identity was violated by external events [27], i.e., when assistant nurses treated and met them with a lack of respect. When discussing undignifying experiences, several residents used metaphors, which may be interpreted as part of a coping process [56], and where humorous personifications can be seen as empowering strategies to reduce the psychological impact of such experiences, and maintain a sense of self and control [57]. Residents’ exposure in care grew more significant, due to their own efforts to avoid being a burden, and their self-imposed task of behaving in a way that made assistant nurses thrive at work. This, however, can be described as a manifestation of residents’ dignity as moral stature, [27], where residents harnessed their dignity by acting in a moral way when taking assistant nurses’ needs into account before their own. This might have helped them to keep their self-respect and sense of dignity. However, it was evident that the residents in this study felt supervised, needed more help to socialise, to regulary get out, and to get the bodily care and attention needed to thrive and avoid feelings of abandonment and loneliness. Such a lack of freedom and recognition of NH residents as individual autonomous people can make them feel as though they are entrapped in a prison without bars, which can mean a severe threat to their dignity [58]. The fact that the residents in this study did not appear to plan for their death, or worry about the persons they would leave behind, may be due to their energy-demanding struggles to safeguard their dignity in everyday life. As NH residents at the end of life need to turn inwards and reflect on life to reach peace in the midst of health complaints and functional limitations, there is also a need to implicate the concept of palliative care when providing care to very old people [49]. This would mean providing a holistic care that comprises attention to bodily needs and social, spiritual and psychological needs to increase well-being and prevent suffering [59]. In the end, this could mean respecting residents’ human dignity, entitling them to be treated with respect to the same degree as any human being, as this type of dignity is universal to all humans, independent of merits, inner thoughts or others’ behaviour [27]. Thus, by focusing on therapeutic interventions regarding residents’ dignity of indentity, identity of merit and indentiy of moral stature, the vague concept of human dignity can be operationalized.

Limitations

This study had some methodological limitations. First, this study was restricted to only one NH in a rural area. However, this is a qualitative study, and the generalisation of the study findings is not of interest. Transferability of the results are for the reader to assess [60]. To strengthen this, a concise description of the participants, context and analysis process have been presented. Second, most participants were women. This may have resulted in a female perspective of dignity-conserving interventions. However, as women generally live longer than men [61], and because NHs are foremost populated by women, their perspectives are important.

Third, social desirability bias must always be considered in such studies [62]. This may have influenced some residents to respond in a way they believe to be more appropriate or socially acceptable, resulting in residents withholding their true thoughts and feelings. To reduce this, the first author spent a considerable amount of time in the NH where the fieldwork was conducted, in fact, 170 hours over six months, which provided a very rich amount of data and understanding of aspects influencing the residents’ dignity. Fourth, the researchers did not ask about residents’ views on dignity; instead, we asked them to reflect on matters of importance to them in bodily care and thereby could risk interpreting their views in the direction of the predetermined dignity model, with the risk that some perspectives went unnoticed or were neglected and consequently not summarised. To reduce this limitation related to neutrality and trustworthiness, data deriving from the interviews and observations were presented to stakeholders who reflected on the results in a focus group discussion. Finally, more research is needed, including cross-cultural research, to explore the transferability of the results other clinical and cultural contexts.

To study dignity and dignity-related concerns in a NH context, we used the Chochinov model of dignity to direct the deductive analysis. The study showed that residents suffered from illness-related concerns that inhibited their possibilities to live a dignified end of life in the NH. Their failing bodies were the most noteworthy threat to their dignity, as their loss of abilities was constantly progressing. Together with a fear of becoming more dependent, this caused feelings of agony and loneliness. An important dignity-conserving repertoire came from within themselves. Their self-knowledge had provided them with tools to distinguish what was still possible from what they just had to accept. Socially, the residents’ dignity was greatly dependent on assistant nurses’ routines and behaviour. Their dignity was violated by long waiting times, lack of integrity in care and deteriorating routines, but also by distanced and sometimes harsh encounters with assistant nurses. As the residents of this study cherished autonomy and self-determination, while still in need of much help, these circumstances placed them in a vulnerable situation. To protect residents’ dignity, assistant nurses need to harness their autonomy. They also need to be aware that residents do not always protect it themselves, as they sometimes consider assistant nurses’ needs over their own. To protect residents’ dignity, NHs need to apply a palliative care approach to provide a holistic care that comprises attention to personal, bodily, social, spiritual and psychological needs to increase well-being and prevent suffering.

Ethics approval and consent to participate

The study was approved by The Regional Ethics Review Board of Stockholm (Dnr 2017/8-31/1). As outlined in the Declaration of Helsinki (World Medical Association [WMA], 2013), the study followed appropriate ethical standards. The nursing home manager was informed and approved the study. Then the nurse-in-charge approached eligible residents and sought permission to hand their names to BH. Next, BH approached the potential participants, gave a brief written and oral explanation of the study and determined whether they met the inclusion criteria as well as understood that their participation was voluntary, that consent could be withdrawn at any time without explanation, that data would be handled confidentially, and that the results would be reported so that identifying the informants was not possible. A week later, BH visited the older persons and collected oral and written consent from those who wanted to participate in interviews, observations, or both. The older persons’ cognition was continuously evaluated during the study, to avoid confusion over the observers’ presence during bodily care. New information was given when confusion was observed, and renewed oral consent was then collected. Assistant nurses were informed about the study by BH at workplace meetings and written consent was collected from those who wanted to participate. In interview transcripts and the fieldnotes from the observations, characteristics such as names and locations were immediately changed.

Consent for publications

Consent for publication was received from the participants.

Availability of data and materials

The datasets used and analysed during the current study are available in Swedish from the corresponding author upon reasonable request.

Competing interests

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Funding

This project was funded by Swedish Research Council for Health, Working Life and Welfare (Dnr 2020-01563). Open Access funding is provided by Uppsala University.

Authors’ contributions

BH and TG were involved in the study design. BH collected the data. Both authors were involved in the analysis and drafted the manuscript. Both authors approved the final version of the manuscript.

Acknowledgements

We thank all our participants who shared their time and experiences with us. We also thank the stakeholders, Knut Vestby, Helena Pettersson, Jonas Smedbäck and Maria Ivarsson, for sharing their time and for deliberating on the findings.

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You are reading this latest preprint version

Dignity in Care at the End of Life in a Nursing Home: an Ethnographic Study

Status:

Version 1

Abstract

Background

Aim

Methods

Design

Setting

Participants and data collection

Theoretical frame and data analysis

Consideration of rigour

Results

Illness-related concerns

Symptom distress: 1A–D

Level of independence: 2A–C

Dignity-conserving repertoire

Dignity-conserving perspectives: 3A–H

Dignity-conserving practices: 4A–C

Social Dignity Inventory

5A–E

Discussion

Limitations

Conclusions

Declarations

References

Competing Interests

Status:

Version 1