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.
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
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.