We present our findings through four overarching and interrelated themes and sub-themes that emerged from the interviews (see Table4).
Most of the patients found that their nutritional status was deteriorating. Their family caregivers agreed: Her nutritional status is much poorer than it used to be. I think its due to her old age. She has lost a lot of weight the last 3 years; she eats less and is less active (FCG8). The patients described struggling with on-going health problems: My health is still very poor because I have cancer in my whole body (P9). They also experienced new health problems: Since I came home from the hospital, my mouth and tongue have suddenly become very sore. It really hurts and I cant taste the food. I dont understand what causes it (P5). All of the patients described challenges related to food and meals. Most of the patients described a lack of appetite, and many said they never felt hungry: I eat and it doesnt really taste bad, but. .. A lot of strange things have happened to me. It is just like I dont feel much like eating anymore. I dont know why. .. I probably dont want to become fat again (P8). Some patients experienced reduced appetite due to nausea, and some had difficulties chewing or swallowing food due to tooth problems, dysphagia and sore mouth and tongue. Patients also described that food no longer tasted like it used to: The food doesnt taste [like] much. I have been wondering about that. .. I make ham with mayonnaise and spices, but it just doesnt taste [like] anything. It may be due to the medications (P3). In general, the patients took many medications. Some of these had to be taken before food, some with food and some after food. Having to plan meals according to medications seemed to negatively influence their nutritional situations. They also described not being able to cook anymore because of functional limitations. Several patients made statements along the lines of I only eat because I have to. The patients understood that food was a necessity for their well-being, but the challenges described above made it difficult for them to ensure sufficient food intake: I feel full so quickly, and I cant force myself to eat, that cant be right, thats ridiculous (P8). One patient described becoming very ill because he could not eat enough: I was very sick and felt so dizzy that I almost didnt know where I was. This happened because I ate too little (P9).
Most of the patients had recently lost weight; this was a fact they were aware of, but for most, they were not worried. The weight loss only seemed to become problematic when it became visible to others or was related to practical problems such as not having any clothes to wear: I dont feel that I am undernourished. The only problem I can think of is that I dont have anything to wear, because all my clothes are too big (P14).
Many of the patients that lived alone experienced loneliness, and this seemed to affect their appetite and meal experience. Several patients described eating alone as depressing: I am very fond of food, and when I eat homemade bread with butter and honey, I feel that my mood gets better. But I can be quite depressed at times. .. I think it is pretty lonely being here all alone (P6). Some also talked about their inability to participate in social activities, such as going to a cafeteria with friends or to dinners, because of restricted mobility. They talked about eating more when they ate together with someone; this was also the family caregivers impression. One patient was interested in eating at a senior centre but was put off by the idea because she had been told there would be many people with dementia there. Some of the patients occasionally ate at a local nursing home for variety from the meals at home and to socialise, but this was not necessarily a good experience: A lot of the people there already know each other, and they sit together and talk. When I come from outside I dont know anyone and end up sitting alone. That feeling of loneliness hurts. I eat my food fast and then I leave (P3).
Most of the patients were very pleased with the care they received in hospital. The healthcare personnel were focused on their nutritional needs and the nurses tried their best to provide them with food to their liking. Some of the patients had a consultation with a nutritionist during their stay and were prescribed nutritional drinks and instructions on how to enrich their meals. However, they did not seem to follow these instructions at home after discharge. The care at home seemed to lack respect or consideration for each patients unique needs and preferences concerning food and meals. One patient said, No one has been here and told me that you need more of this and that and that we need to make your food richer in calories. It is more like, What do you want? And then thats what you get (P13). None of the patients could remember home care services asking them about their nutritional problems, the reasons behind the problems or discussing possible solutions. They believed that many of the staff lacked competence about nutrition and knowledge about their nutritional needs and preferences. The home care staff were often students studying other fields than healthcare who were working part time in home care while studying. The patients said that qualified nurses seldom visited them: The nurses seldom stop by. They are supposed to be here twice a week, but that doesnt happen very often (P13). In general, the patients experienced few changes in their care between the first and the second interview.
The food they were served by home care usually consisted of slices of bread for breakfast and lunch and ready-made meals heated up in the microwave for dinner. Some of the patients thought this food was ok, but several of the patients disliked these meals: I can actually make sandwiches on my own. I cant stand the sandwiches they prepare for breakfast and put in the fridge the night before. The next morning, they are ice cold and I think they are horrible (P14). Especially, the food prepared for dinner was problematic for some. All the patients living alone described eating ready-made meals for dinner regularly, and they described cooking as pressing a button on the microwave. They felt that because these meals had to be made within the sparse time the home care services had for each of them, their diets were limited. One patient said, I had to get a microwave oven, because that was the first thing they (homecare services) asked for when they started coming here. I dont like such food. I want to make homemade food. I dont know what kinds of food I am supposed to buy. I cant eat only ready-made meals. First of all, I cant stand the taste of these ready meals, and secondly, I find them too expensive (P1). The family caregivers explained that they bought these microwave meals for practical reasons even though they generally knew that the patients were not fond of them. Several patients described being served tasteless meals and food they disliked, which resulted in a reduced food intake: We get some fish cakes without taste with grated carrot without any dressing, with potato and maybe a spoonful of butter. You dont enjoy that. It doesnt taste anything. Then I just eat a little and leave the rest (P3).
Many of the patients described a longing for tasteful meals; this was often traditional foods or food normally served during holidays. The patients also described pleasurable meal experiences: Patient: You know, I get so happy when the food finally tastes good and we get a tasty sauce or something. Aah. .. today we had herring with onions, red beets and sour cream and I had two filets and two potatoes. Today the food was lovely and it made me happy. Interviewer: Im glad to hear that you had a good meal. Patient: Yeah, that is so important for my wellbeing and everything (P3). Tasteful meals, meals made by family caregivers and eating in social settings seemed to stimulate the patients appetite and inspire them to eat more: The other day I really ate too much for dinner. My daughter served fried sausages with red cabbage and potatoes and it was just so good! (P13).
The patients reported that care was organised in a way that seemed to lack respect for their daily routines. Home care staff often did not turn up when they were supposed to, and patients described not being able to go out because they had to wait for staff, which restricted their freedom: On Sundays, they phone me at quarter to twelve and say, Hi, we are a bit delayed today. They come to make me breakfast at quarter past twelve! It is a bit like that. It is often because of shortage of staff (P13). The patients also told stories of home care services not turning up at all. Additionally, when they tried to phone them, they could not reach anyone: It is impossible to call them, and no one answers the phone during the day. No one. You cant get hold of anyone (P13). One patient who was almost blind and unable to prepare food experienced this several times. Fortunately, she could call her daughter who lived close by for help. When home care staff did not show up or did not turn up at the right time, the patients were not in charge of their life situations.
Sometimes, the home care visits were scheduled too early or too late and were not in accordance with the patients preferences. When being dependent on help for meals, bad timing of the meals could result in patients not eating for many hours or eating less: I dont eat much besides dinner. I: At what time is that? P: At one oclock, that is a ridiculous time. .. I set my alarm clock at 1011, I then get up and sort out my medication and Im not hungry, and then I just wait for dinner. If dinner had been at three oclock instead, I would have made some breakfast (P3). The patients reported that the care services were always in a rush, not having time to care for them or talk to them: For many people living alone, the only human conversation they have during a day is with the people from home care services. I think it is important that they take the time to talk to these people, not just rush in, make food and goodbye (P13).
Most of the patients were striving to maintain independence and control, and they wanted to manage their food and meals themselves; however, they needed help. For some, becoming dependent on help from others was an inner struggle: When you are used to managing everything yourself and then you suddenly become dependent on help to prepare a sandwich. Can you imagine? It is a bit depressing just thinking about it (P13). One patient valued her independence so much that she kept her problems with food and meals hidden from her family for a long time and rejected care services help. One of her family caregivers said, She never told us about her problems. They reduced the home care from every two weeks to every third week. The weaker she got the less help she received. But then they told us in one of the meetings that she has been offered help several times, but she has not been interested. She prefers to manage on her own (FC14).
The patients emphasised the importance of having a voice in the matter of food and meals I want to have a say in the matter too (P15) and the importance of being able to eat the food they wanted whenever they wanted. The patients who needed assistance preparing meals did not have this freedom; they had to eat what the care services could manage to prepare within their short timeframe.
Although the patients expressed a desire to be independent, they were not offered any self-management support from the care services. They were dependent on additional help from family caregivers, neighbours and friends to manage their daily lives, to understand information and to communicate with healthcare services, indicating a paternalistic approach to care. These disempowering experiences with home care resulted in dissatisfaction with care.
The patients described a lack of mutual comprehension of information about their health, treatment and care. They told stories about not understanding or remembering information they received in hospital. In fact, most of the patients who received a consultation with a nutritionist in hospital could not remember the content of this conversation: Two nutritionists came to talk to me when I was in hospital. Interviewer: what did they say? Patient: I dont know, it was so complicated, I just gave up (P9). The reasons they gave for this were that they were too ill, there were too many different people involved in their care and that they experienced medical terminology and information overload. Many of the patients were not able to understand the written information they received in hospital: I received a lot of written information, but I dont understand half of it (P8). Family caregivers generally had to help the patients communicate with the healthcare services and explain written information.
The patients experienced a lack of essential information about their own treatment. One patient who was seriously malnourished and almost blind could not obtain information about her nutritional treatment. During the first interview, she showed us an envelope she had received at the hospital; it contained a detailed nutritional plan that she was supposed to follow. She had no previous knowledge of this plan and could not remember if anyone at the hospital had informed her about it. She was not able to read it herself because of her poor eyesight. Her daughter, who did all her food shopping, had not been informed. She said, They have made her a nutritional plan. It must be this one. They didnt talk her to about it they just put it in the envelope with the rest of the papers (FC13). The patient was supposed to inform the home care services about this nutritional plan herself, but as she did not know she had received it, the care services were not informed and did not provide her with this necessary treatment.
The patients said that no one had talked to them about the risks associated with weight loss. Interviewer: did the doctor tell you why it is important not to lose any more weight? Patient: No, he did not. He is so thin, and probably thinks I shouldnt be any bigger (P8). Several of the patients were happy to finally have lost some weight: I dont understand why this has happened, but I am happy that my waistline is reduced. It doesnt bother me that I lose some weight (P3).
The lack of mutual comprehension undermined the patients involvement in their healthcare decisions. Many experienced a lack of shared decision-making, and for some, this caused distress. For instance, decisions about their nutritional care were made without consulting them; receiving help against their will caused resistance: Patient: They have started to prepare sandwiches for me, but I have told them to stop doing that. I can manage on my own. Interviewer: Did they start doing this after you came home from hospital? Patient: Yes, but I dont know who have told them to do that (P9). Another patient said, I dont know whats wrong with me. I just got a prescription for some new vitamin tablets. They cost a lot and I have refused to pay for them. I need an explanation of whats going on (P3).
The patients experienced a way of communicating that lacked respect and sensitivity to their needs and values. The dialogue about food and meals with the home care services generally consisted of What have you eaten?, What would you like to eat? and It is important that you eat. Some of the patients found this stressful. One family caregiver said, They constantly urge her to eat and she says that she is fed up by it. Thats what they do, the people that visit her in the morning and the afternoon (FC14). Some felt like they were disrespected in the dialogue about food and meals or that food and medication was served to them without them agreeing to be helped or in a way that felt violating. One patient said, Would you believe it, they went over and felt the casserole to see if it was warm. It was just like they didnt believe us (P10). Another patient said, They gave me some vitamin B and said you should take these. I dont understand why. They just give me the pills and say take these, and then they leave (P2). Another patient experienced poor communication with the home care services when they just stopped visiting him without telling him why. He suspected that it was because they meant he could manage without help. The poor communication negatively affectedthe participants perceptions of thenutritional care.
Not being provided with care according to their individual needs at home resulted in patients being dependent on additional support from family caregivers, friends or neighbours. All of the family caregivers that participated in this study regularly did the grocery shopping for the patients. Occasionally, they brought homemade food and accompanied the patients during meals. They provided support that was essential for the patients nutritional well-being; still, they were generally not involved or informed by the healthcare services about nutritional care, and some lacked knowledge about the patients nutritional situations and needs: I really think you need to be good at asking the right questions to get the information you need as a family caregiver. I myself may also seem a bit ignorant about these things? (FC1). One family caregiver described conflicting opinions between her and her mother about how much help she needed with meals at home: They used to come four times a day, and then she told them that she only needed them to come three times a day. Sometimes when I come to visit around six oclock she says, Im so hungry, they havent been here. It was her that wanted them to come three times a day. But now I have asked them to change back to four visits a day so they can cook for her (FC6).
Although the caregivers were generally thankful for the care that was provided to their loved ones, some family caregivers experienced disempowerment during meetings with the care services and felt they were not given the necessary support as caregivers. They felt it was demanding and sometimes exhausting caring for their loved ones because the care services were not able to provide care according to the patients needs. One daughter said, I am her only family and I just cant take it anymore. It is so exhausting, especially since she is so depressed (FC6). When the patients were living together with or close to family caregivers, home care services relied on the caregivers to provide nutritional care, which in some cases resulted in inadequate patient follow-up and burdened the family caregiver: I experience that they keep on asking me to do things. And then I find out that that no, that is not my responsibility (FC6).
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Older patients' and their family caregivers' perceptions of food, meals and nutritional care in the transition between hospital and home care: a...
