Mealtime challenges in patients with chronic obstructive pulmonary disease: Who is responsible?

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(1)Danish University Colleges. Mealtime challenges in patients with chronic obstructive pulmonary disease: Who is responsible? Sørensen, Dorthe; Rottensten Wieghorst, Anna; Andersen Elbek, Johanne; Mousing, Camilla Askov Published in: Journal of Clinical Nursing. Publication date: 2020 Document Version Peer reviewed version Link to publication. Citation for pulished version (APA): Sørensen, D., Rottensten Wieghorst, A., Andersen Elbek, J., & Mousing, C. A. (2020). Mealtime challenges in patients with chronic obstructive pulmonary disease: Who is responsible? Journal of Clinical Nursing, 29(23-24), 4583-4593. https://onlinelibrary.wiley.com/doi/epdf/10.1111/jocn.15491. General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights. • Users may download and print one copy of any publication from the public portal for the purpose of private study or research. • You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal Download policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim.. Download date: 24. Mar. 2022.

(2) Accepted Article. Title Mealtime challenges in patients with chronic obstructive pulmonary disease: Who is responsible? Running title Mealtime challenges The full names of the authors and institutional affiliations at which the work was carried out Dorthe Sørensen1, RN, MSEd, PhD Anna Rottensten Wieghorst1, Stud. MSc, Johanne Andersen Elbek1, Stud. MSc. Camilla Askov Mousing, MScN1, PhD 1. Research Centre for Health and Welfare Technology, Programme of rehabilitation VIA University College, 8000 Aarhus, Denmark. Corresponding author’s contact email address and telephone number Dorthe Sørensen, RN, MSEd, PhD E-mail: DSOR@via.dk Mobile: +45 8755 2193 ORCID: 0000-0001-6362-3385 LinkedIn: https://dk.linkedin.com/in/dorthesorensen1 Twitter: @dorthe_srensen. Contributions: Study design: DS, ARW, JAE, CAM Data collection: ARW, JAE Data analysis: DS, ARW, JAE, CAM Manuscript preparation: DS, ARW, JAE, CAM Declaration of conflicting interest The authors declare no conflicts of interest with respect to the authorship and/or publication of this article.. This article has been accepted for publication and undergone full peer review but has not been through the copyediting, typesetting, pagination and proofreading process, which may lead to differences between this version and the Version of Record. Please cite this article as doi: 10.1111/jocn.15491 This article is protected by copyright. All rights reserved.

(3) Accepted Article Funding. This project did not receive any extern funding. Acknowledgements The authors are grateful to all participants, without whom this work would not have been possible. We would like to acknowledge the support of staff working at the Regional Hospital and in Home care in Randers, Denmark.. This article is protected by copyright. All rights reserved.

(4) Accepted Article. DR. DORTHE SØRENSEN (Orcid ID : 0000-0001-6362-3385) MRS. CAMILLA ASKOV MOUSING (Orcid ID : 0000-0001-6662-7584). Article type. : Original Article. Title. Mealtime challenges in patients with chronic obstructive pulmonary disease: Who is responsible?. Keywords (MeSH) Pulmonary Disease, Chronic Obstructive; Diet, Food, and Nutrition; Nursing; Qualitative Research; Observational Study; Primary Health Care; Hospital Medicine Abstract Aims. This study is aimed at exploring experiences of, and practices related to, mealtime challenges in patients with COPD.. Background Nutritional status is a significant indicator of prognosis and outcome in patients with COPD. Preventing unintended weight loss and helping patients regain weight are important nursing tasks. Dietary supplements have been effective in treating underweight in cases of stable COPD. However, compliance with long-term interventions is quite low. Improving nutritional intake through knowledge of meal-related challenges is the key to making further progress in preventing unintended weight loss.. Design This study employed an ethnographic design using the go-along method.. Methods From September 2018 to June 2019, 34 hours of meal-related observations and informal conversations with purposefully selected patients (n=15) were completed at a Danish. This article is protected by copyright. All rights reserved.

(5) Accepted Article. respiratory medicine ward and in patients’ homes. We analysed the empirical data using a. Ricoeur-inspired method. Reporting adheres to the COREQ Checklist.. Findings In this study, we identified the absence of professional responsibility as a main challenge. Mealtimes appeared to be relegated to a matter of nutrition, and common practices surrounding mealtimes were no longer observed. Patients became dependent individuals who had to settle for the food available. In addition, physiological challenges often resulted in patients re-evaluating the benefits of eating, concluding that it was not worth the effort and therefore not eating. Furthermore, patients were hesitant to communicate their needs, which left a number of non-verbalised challenges unattended.. Conclusions Overall, meal-related challenges pose a risk of unintended weight loss, and the health professionals’ work with mealtimes lacks a coordinated, systematic approach. Further research is needed to develop or implement interventions that can accommodate mealtimes.. Relevance to clinical practice This study contributes valuable knowledge that can be used to improve the quality of nursing care and prevent unintended weight loss in patients with COPD.. Impact statement ●. This study contributes insights into the complexity of patients’ mealtime challenges.. ●. This study contributes insights into the importance of assigning professional. ●. responsibility for mealtimes. This study contributes to a comprehensive understanding of the importance of mealtimes to prevent unintended weight loss and underweight in patients with stable and unstable COPD.. Main Article Introduction The lack of prevention and inadequate management of underweight in patients with chronic obstructive pulmonary disease (COPD) is a frequently occurring problem (World Health Organization). Underweight increases mortality, prolongs hospitalisations and negatively influences quality of life (Schols et al., 2014). Although dietary supplements are effective in increasing weight during hospital stays, weight loss and underweight remain major. This article is protected by copyright. All rights reserved.

(6) Accepted Article. challenges for patients with COPD (Collins et al., 2013; Singh et al., 2019). The present paper focuses on experiences of and practices relating to mealtime challenges in stable and unstable phases of COPD. We discuss mealtimes as involving more than just nutrition, and we discuss how the responsible involvement of health professionals may prevent weight loss and underweight.. Background COPD is estimated to be the third major cause of death worldwide (Naghavi et al., 2017). COPD is a syndrome characterised by progressive and partly irreversible expiratory airway flow limitation. Its underlying pathophysiology is the progressive destruction of the elastic and alveolar tissue within the lung, which results in inefficient respiration (Singh et al., 2019).. COPD is punctuated by recurrent exacerbations, characterised by a worsening of the patient’s symptoms, including dyspnoea, coughing and sputum production that exceeds dayto-day variations (Singh et al., 2019). The nutritional status of patients suffering from COPD has been identified as an outcome indicator, but the relationship between weight and outcome depends to some extent on the severity of the COPD condition (Rawal & Yadav, 2015). However, a common consequence of moderate to severe COPD is weight loss induced by increased resting energy expenditure, systemic inflammation, hypoxia, medication and ageing (Rawal & Yadav, 2015). Although overweight has a greater impact on all-cause mortality at a moderate level of COPD, underweight is an independent risk factor for mortality at all severity levels. Furthermore, the number and length of hospitalisations increases with a decrease in weight (Schols et al., 2014). The occurrence of underweight in patients with COPD is between 25 and 40 percent (Rawal & Yadav, 2015). Unintentional rapid weight loss can be triggered by exacerbations in COPD during hospitalisation or at home (Vermeeren et al., 1997). Weight loss may also occur gradually over time due to the patient’s inability to consume the required amount of energy by eating (Rawal & Yadav, 2015). Besides general physiological challenges, patients with COPD also experience concrete challenges directly related to food intake. Studies that have explored patients’. personal experiences with eating show that patients become short of breath when they eat, lack appetite and find that food loses its taste (Dickenson, 2009; Odencrants et al., 2005). These studies also show that patients find that their coughing increases while they eat, that they find it harder to chew and that the food’s texture is of great importance to them (Dickenson, 2009; Odencrants et al., 2005). Furthermore, patients mention social situations and practical issues as obstacles. These include food preparation, eating with other people or in public environments and shopping for groceries, which all affect daily food intake (Dickenson, 2009; Odencrants et al., 2005; Odencrants & Theander, 2013; Shalit et al., 2016). Evidence shows that dietary supplements served during hospital stays are effective in. This article is protected by copyright. All rights reserved.

(7) Accepted Article. treating underweight in patients with stable COPD (Ferreira et al., 2012). In addition, a Cochrane review shows that providing underweight patients with a nutritional supplement for a minimum of 14 days promotes short-term weight gain (Ferreira et al., 2012). However, in. long-term interventions, compliance is as low as 50 percent (Ferreira et al., 2012). International guidelines, such as the Global Initiative for Chronic Obstructive Pulmonary Disease (Singh et al., 2019), emphasise the importance of prevention and rehabilitation in management strategies for patients with COPD. According to the World Health Organization, the goals of effective COPD management include preventing disease progression, improving health status and reducing mortality and risk factors (World Health Organization). However, nutrition receives little emphasis as a risk factor in relation to these goals (Singh et al., 2019). Even when there is a considerable focus on providing enough energy and protein to patients with COPD, their nutritional intake may remain suboptimal (Walton et al., 2007). A study of the mealtime challenges facing neurological patients has shown that issues such as the environment, the social atmosphere and the priority the meal receives all influence food consumption (Beck et al., 2016). However, to our knowledge, no studies address the mealtime challenges facing patients with COPD. In this study, we aim to explore experiences of, and practices related to, mealtime challenges in stable and unstable phases of COPD. Methods Study design A qualitative study of experiences of, and practices related to, mealtimes was carried out from September 2018 to December 2019 in Denmark. We applied the go-along method (Kusenbach, 2003) to explore experiences and practices related to mealtime challenges facing patients with COPD. The ‘go-along’ is an ethnographic research tool that brings attention to some of the transcendent and reflexive aspects of lived experience as grounded in place (Carpiano, 2009; Kusenbach, 2003). The method builds on the embodied way of knowing and exposes the complex meaning of place in everyday experience and practices.. Interviewing brings phenomenological sensibility to the ethnographic observations and contributes to an understanding of how patients comprehend and engage their physical and. social environments in mealtime situations in everyday life (Kusenbach, 2003; Thompson et al., 2015). In terms of epistemology, the go-along method is compatible with theoretical. approaches within interpretive sociology acknowledging the importance of the body in describing the structures of the life-world (Schutz & Luckmann, 1973). The go-along method studies what people experience and how people navigate and maintain a sense of social and structural order in various contexts and is a tool to examine how physical, social, and mental dimensions of place and space interact within and across time for individuals (Garcia et al., 2012; Kusenbach, 2003). During the go-alongs, we interviewed, listened and. This article is protected by copyright. All rights reserved.

(8) Accepted Article. observed, and actively explored their experiences and practices as they occurred (Carpiano, 2009; Kusenbach, 2003) at the hospital and in the patients homes. Inspired by Spradley’s (Spradley, 1980) grand tour dimensions, the following topics guided our observations: physical places, activities, events, emotions expressed, people involved, physical things present, what people try to accomplish and what takes place over time. During the interviews, we asked open-ended questions such as: Can you describe for me what a typical mealtime in your day is? Can you tell me what you associate with the perfect mealtime? Can you give examples of what challenges you experience related to a mealtime? Can you tell me what a mealtime means to you? The consolidated criteria for reporting qualitative research (COREQ) has guided the reporting of this study (Tong et al., 2007) (Supplementary File 1). In addition, we conducted regular research meetings to discuss the data analysis, sampling methods and data generation. In terms of occupational and educational background, the research team included four female researchers - two registered nurses (associate professors) with a background in respiratory and pulmonary care and two masters’ students (Master of Science in Public Health) with a background in nutrition.. Sample and participants We purposefully sampled Danish-speaking patients with COPD who had experienced mealtime challenges and who were not terminally ill to ensure a useful manifestation of the phenomenon (Patton, 2014). Being challenged during mealtimes is defined in this study as those who are at risk of a sparse nutritional intake due to shortness of breath, coughing and increased mucus production (Dickenson, 2009; Odencrants et al., 2005), or having issues regarding food preparation, shopping for groceries and eating with other people (Dickenson, 2009; Odencrants et al., 2005; Shalit et al., 2016). The sample size was not predicted prior to the study, and the sample procedure continued as long as we were able to obtain additional new information and until further coding did not add new insight to the themes (Guest et al., 2006). The head nurses in primary healthcare and at the hospital acted as gatekeepers by identifying and approaching the patients, so we had no relationship with the participants prior to the start of the study. The patients’ primary nurses initiated contact with eligible patients, who subsequently received study-specific information and invitations from the researchers to participate in the study.. Data collection The go-alongs took place in two settings: at the hospital and in the patients’ homes. At the hospital, the patients participated in the go-alongs while hospitalised for an acute exacerbation. The hospital kitchen supplied all meals throughout the day. This particular. This article is protected by copyright. All rights reserved.

(9) Accepted Article. hospital kitchen gave a high priority to organic produce, emphasised quality through home cooking, including butchering and baking, and had a ‘no additives’ policy.. The go-alongs at the hospital took place during various mealtimes. We accompanied the patients in the time leading up to a meal, when selecting food from the menu, during the meal and until the meal was completed and cleared away by a healthcare professional. During and after the meal, a researcher from the team placed herself next to the patient at a distance conducive to having a friendly but not intimidating conversation and asking openended questions. The mealtimes included breakfast, lunch, an afternoon snack and dinner. The go-alongs in the patients’ homes were informal and consisted of a broader range of meal-related activities. For example, we went shopping with one patient, were present during meal preparation with another patient and took part in a meal in the home of a third patient. We took fieldnotes during the go-alongs. At the hospital, the written fieldnotes contained phrases, single words and short sentences written down during the observations and interviews. The purpose was not to write down everything, since the writing may affect the relation to our participants (Spradley, 1980). However, the notes represented a condensed version of what occurred. We supplemented the condensed fieldnotes with written reflections immediately after each go-along. Notes from observations and interviews from the patients’ homes were written down as a recall of what happened and with as many details as were. remembered (Spradley, 1980). In total, our notes contained 150 pages of transcribed text. The go-along method was not pilot-tested but we collected data until we achieved thematic saturation. The second and third author collected the data between September 2018 and June 2019. In total, 19 patients were invited to participate in the study. Four did not participate in the go-alongs for the following reasons: two declined to participate, one was lost due to discharge from the hospital and one was too affected by other health issues. The remaining 15 participants (see table 1) consisted of 12 females and 3 males, all of Danish origin. Nine patients were recruited from the hospital, and six were recruited through home care. Two of the patients were followed in both the hospital and their homes. The remaining seven patients from the hospital were too ill to cope with home visits. At the hospital, the goalongs included interactions with the health professionals and relatives who came and went. For the go-alongs in patients’ homes, several patients had either a spouse or a friend. present. The patients’ ages ranged from 62 to 90 years (mean = 76). The number of goalongs for each patient ranged from 1 to 7 and lasted a maximum of 80 minutes (mean = 38).. [Table 1: Presentation of the participants]. Ethical considerations. This article is protected by copyright. All rights reserved.

(10) Accepted Article. The study complies with the Declaration of Helsinki guidelines on human experimentation and complies with the General Data Protection Regulations (approved 26-09-2018).. According to Danish law, qualitative studies must be registered only if the project involves the study of human biological material, contains personally identifiable data, or is part of a clinical trial. None of the authors has been involved in the clinical care of the selected patients. All participating patients were mentally and physically able to understand and sign the written informed consent form. At the hospital, the go-alongs included brief interactions with some health professionals and relatives who came and went. The involved health professionals were all informed before the study began and they gave informed consent to the head nurses who acted as gatekeepers prior to sampling of the participants. Relatives who came and went were informed about the study but they did not participate in the study. Identifiable information about the participating patients, home care and hospital was treated confidentially and anonymised within the manuscript. We offered each participant a summary of the associated fieldnotes, but no one wanted to review the transcripts. The authors have previous experience with conducting qualitative research and analysing qualitative data.. Analysis Drawing on Ricoeur’s hermeneutic-phenomenological interpretation theory (Charalambous et al., 2008; Ricoeur, 1976; Simonÿ et al., 2018), the data analysis focused on understanding people in context. We took both the experiences of the patients (what is said) and of the researcher (what is observed) into account and let the language of both sources speak to us about the lived experiences (Simonÿ et al., 2018). Three analytical phases were involved, and these phases were carried out in a cyclic mode throughout the analysis process, requiring repeated returns to data to refine the theme development (Ricoeur, 1976; Simonÿ et al., 2018) between March 2019 and December 2019. For a preliminary analysis, the second and third author began a reading of the complete text—consisting of notes gathered from the observations and interviews to gain a sense of the whole. An inductive approach was used to understand the patients’ experiences and practices of mealtime challenges. During the first phase, we began to formulate thoughts about its meaning for further analysis of the patients’ practices and interpretations. After that, we followed up with a structural analysis. Interpretations and tentative analyses were compared, challenged and preunderstandings were discussed to identify patterns of meaningful connections, which were thematised into five themes. Finally, the themes were re-contextualised in the light of relevant literature (Charalambous et al., 2008; Simonÿ et al., 2018). In the presentation of findings, we use examples from specific go-alongs to support the research team’s analyses. This article is protected by copyright. All rights reserved.

(11) Accepted Article. and themes. In the examples, we use ‘O’ to indicate observations and ‘I’ to indicate interviews, followed by the patient ID.. Findings Overall, the analysis showed that mealtimes shifted from the more complex situation normally associated with the term ‘meal’ towards being more task-oriented, with a main focus on offering and eating a meal. Furthermore, the analysis showed that the patients’ mealtime challenges are enormous, and they seem left to face these challenges alone. The data analysis revealed five themes: (1) Nobody’s responsibility; (2) Eating time; (3) Settling for the food available; (4) Not worth the effort; and (5) Things left unsaid. Eating time For patients with COPD, the mealtime environment in general had shifted from a series of rituals leading up to the culmination of eating and experiencing an enjoyable social situation to a practical necessity – the need for nutrition. One patient remarked, “It feels like I’m being fed”. (I-9) Furthermore, the mealtime was no longer a social situation, and disturbances by co-patients, guests and health professionals were regular occurrences. Hospital observations showed that guests visiting the patients or co-patients often arrived during meals and that co-patients talked loudly on their phones, creating a disturbance: The copatient receives a phone call and she answers it loudly. The patient looks in the direction of the voice and adds, "This is how it is all day long". (O/I-3) The health professionals also caused disturbances during meal situations, during which they moved furniture and co-patients in and out of the room and distributed medication. When copatients had acute exacerbations that included severe shortness of breath, coughing and sputum, this affected the other patients with COPD emotionally. When this coincided with mealtimes, it reduced or destroyed the patients’ appetites, and for some, it led to them finishing their meals as soon as the food was served. One patient even expressed this by describing: “Oh, the coughing and spitting almost make me vomit". (O/I-9) Patients’ personal boundaries were also overstepped when inappropriate mealtime actions were taken. For example, a patient was asked about food preferences while on the toilet (O9). Observations revealed that the patients were often seated in their beds with their backs to their co-patients. Most meals were served at the bedside table, but the table was not necessarily cleaned: The patient was seated in the bed, with his back to his co-patients. The meal was. served at. his bedside table. The bedside table was not cleaned before the meal, and. This article is protected by copyright. All rights reserved.

(12) Accepted Article. used tissues and saliva bags were observed on the table during mealtime. The food was served without. any comments. (O-1). The patients mostly ate sitting on their beds, and only a few used the adjacent chair and table. The food was often served without any comment, and different health professionals served the food and cleaned up after the meal. Thus, the opportunity to discuss the meal and assess the patient’s food intake was lost. Enough time to eat plays an important role. One patient expressed this by saying: “The perfect meal is when I have plenty of time to eat one of my favourites. I'm mostly into soup”. (I-2) The patients appeared to be stressed by the speed with which the health professionals cleaned up after the meal. In some cases, the patients still had food in their mouths when the food tray was removed. One patient remarked, “They’re so bloody quick” (I-3), referring to the health professionals. In the patients’ homes, meals were often served at a table cluttered with items such as a full ashtray, cigarettes, medication packages, tissues, a telephone and a therapy mask. The prepacked food was of standard portion sizes and not adjusted to the individual patient. However, to be comfortable while eating, the patients adapted their physical positions by introducing cushions and homemade armrests as supports. This was often the case for those patients living with a relative, whereas those who lived alone were much more dependent on home care or prepacked food. One patient states: “The time of my meals depends on when the home care arrives to give me insulin and there are big fluctuations in the time" (I-14). Lack of communication about the patient’s food intake and the health professional’s speed remained similar to that of the hospital. Nobody’s responsibility Patients have to deal with the mealtime related challenges on their own, even when they do not seem to possess the necessary acquired knowledge to do so. Health professionals rarely asked patients what they thought of their meals, whether the amount of food was sufficient or if the food was to their taste. When patients left food or refrained from eating at all, health professionals did not investigate the reasons for this: The patient indicates that she has finished eating by pushing the tray away. She. leaves the. broccoli and most of the fish. When the tray is picked up by a health. professional, there is no follow-up or conversation with the patient about the food, the portion size or her appetite. (O-5) At the hospital, there seemed to be some confusion regarding who was responsible for the various steps in the meal procedures. More than one health professional were asking what the patient had ordered, food orders were being lost, patients were not being asked whether their sitting position was comfortable, and trays were being removed by different health. This article is protected by copyright. All rights reserved.

(13) Accepted Article. professionals than those who brought them: While the patient was in the toilet, a health professional came and began to clear away. She picked up P’s tray of food, but thought better of it, saying, “Oh, I’d better wait and see whether she wants any more.” (O-6) In the patients’ homes, a similar picture emerged. There seemed to be no regular health. professionals dealing with the meals, and food was thrown out without any conversation with the patient. The patients did not have sufficient disease-specific information, or knowledge of. the risk of losing weight. One patient state:. food. I know about COPD from the TV and Internet. I have not been told anything about and COPD. My GP did a breathing test but never checked my weight. (I-12). Patients had not recently been introduced to the risk of weight loss associated with COPD, and they had no contact with a dietitian. One patient expressed her regrets about the trajectory of her disease during the past few years: They asked me, “How’s your appetite?” Well, I just said it was okay, and after that,. nothing. more was said about it. Instead, I was sent to have all kinds of stomach and. bowel tests,. but nothing was found. It’s only in the last six months that I’ve been in touch. with a dietitian,. who told me straightaway that there was a link between my COPD. condition and my weight. loss. (I-9). From her perspective, her nutritional status should have been taken more seriously at an earlier stage, when her weight loss began and she approached primary healthcare for help. Settling for the food available In most patients’ cases, the situation surrounding food selection had changed during the trajectory of their disease. The patients went from being autonomous individuals who were able to make decisions about what, where and when to eat to being dependent individuals no longer in charge of their own mealtimes. Topics such as food quality, texture, taste and the time of the meal became important. The patients commented on the quality of the food because it did not match the standards to which they were accustomed when they could cook their own meals. This was the case at the hospital and in the patients’ homes. One patient commented on the butter not being real butter, but a substitute product, while another remarked that the cake was too dry for her to eat. At home, lunch was typically prepared in the morning and left in the refrigerator for the patient to eat at lunchtime four or five hours later. This made patients lose their appetites: “Oh, Lord, no, I’m not going to touch that cheese. It’s all dry and crusty. It’s been lying there since this morning” (I-7). The patients’ reduced ability to taste also affected their food intake. Several patients said that the food no longer tasted the way they preferred. This, in some cases, caused them to always choose the same dish, as they felt more certain that this particular food would live up to their taste expectations. At home, some patients received food that had been centrally. This article is protected by copyright. All rights reserved.

(14) Accepted Article. prepared in an industrial kitchen. One patient explained that he had asked the carer to tell the caterers “that they should tell them to make food like my old lady used to” (I-15). The food’s texture greatly influenced the patients’ food choices and prevented them from eating certain items, which they found inedible: The patient peels her egg and inserts the spoon. She sighs deeply when she. discovers that the egg is hard-boiled. “It’s hard-boiled, not soft-boiled”. The researcher asks what this. means to her and she replies, “A hard-boiled yolk like that, I just can’t get it. down, so I can’t. eat it. Oh well, that’s just the way it is.” The patient pushes the tray of. food away (O-8). Patients said that soup was their favourite dish, pointing out that they were able to eat soup much more quickly than they could eat solid foods. At the same time, preferences concerning texture were more individual. For some patients, rye bread could cause problems, whereas others experienced difficulties with meat or something entirely different. One patient said:. that. I've got more into bread and cold food with a cup of coffee, I like that. It's something has changed, and maybe it's because I usually eat alone. (I-15). The patients had become dependent on help from either caregivers or family members to prepare their food. This meant that mealtimes could vary and were out of the patients’ hands. At the hospital, patients had to eat when meals were served. A morning snack was typically not included in this service, which meant that they had to ask for food individually to get any. The patients tended not to do this, as they did not like to add to the nurses’ busy schedule. At home, some patients relied on caregivers to visit them before they could eat. However, some visits took place too close to each other, so the patients were unable to work up an appetite between meals. Not worth the effort The patients’ well-being varied from day to day, and patients often referred to ‘good’ or ‘bad’ days: On bad days it's hard to digest my food. I get short of breath and get tired. That’s why I. don’t always associate the mealtime with something nice, like it once was. (I-4). On days when the patients felt physically well, which mainly included steadier, in-control breathing, they consumed more food. However, on bad days, the task of eating became so. strenuous that it ended up not being worth the effort for several patients. Mealtime duration was generally long and included many periods of rest during which the patients tried to regain control of their breathing. The patients re-evaluated whether it was worth the effort to. continue the meal. For patients, eating a meal included a belief in their own ability to manage chewing and swallowing while maintaining control of their breathing, as well as having to overcome the physical consequences and risks of having to eat the particular food that was. This article is protected by copyright. All rights reserved.

(15) Accepted Article. served. During these periods of rest, the patient’s level of discomfort, pain or fear, rather than their actual appetite, determined whether they continued eating. For many, these periods of rest resulted in giving up on the meal completely: It’s not worth the effort. I stop [eating] because I can feel it taking up too much energy. The food starts to get stuck in my throat. It’s not because I don’t want more food; I simply don’t have enough air to eat it. (I-9). In this situation, the patient ended up finishing her meal after another couple of bites, pushing the tray away from her to emphasise her decision further. Often, the physical act of eating appeared to be accompanied by some degree of fear or lack of bodily confidence. This was expressed in how they strategically took small and careful bites. Regarding certain types of food, some patients’ previous experiences determined whether they would attempt to eat the food in front of them or avoid it completely. Eating seemed to take up a great deal of the patients’ energy, and on particularly bad days with low energy levels, consuming a meal required a lot of effort. Moreover, all the natural activities surrounding the meal, such as being seated in a chair at a table, required just as much effort, if not more, which was why many patients avoided these activities. Things left unsaid The patients were unaware of some things and left others unsaid. Some patients lacked an understanding of the correlation between their COPD and the challenges they experienced. On several occasions, the patients said that they did not know that weight loss could be a problem for their condition. A lack of understanding regarding why they lost weight was also an issue. Furthermore, the patients’ statements and actions were inconsistent. One patient maintained that she rarely left any food on her plate; however, we regularly observed that she did not finish her meals. The patients seemed to think that they were not challenged by their COPD, but our observations indicated otherwise. One patient said that she did not feel challenged when cooking. However, she exhibited laboured breathing when taking the food out of the oven and carrying it to the table. Furthermore, she also explained that she prepared the food in stages the day before they were to eat it. In addition, a lack of coherence was evident in the inconsistency between words and actions: No, I can’t really say I’m ill, because I’m not, you know. Mostly, it doesn’t really bother me at all. It hasn’t been something that I’ve felt I can’t cope with. It might get like that at some stage. (I-13). Overall, patients seemed reluctant to approach the health professionals for what might be deemed less acute needs, such as help sitting up or lying and having food served when they were hungry: "I really miss my 9.30 bread and butter. After breakfast, I don’t get any food until lunch”. (I-7). The researcher remarks that the patient could certainly get her piece of. This article is protected by copyright. All rights reserved.

(16) Accepted Article. bread in the morning if she asked for it, but she won’t: “No, I’d rather just wait. I might as. well". (I-7) Patients also stressed that they were quite appreciative of the care they received and that this was not to be taken for granted. At the hospital, they praised the quality of the food, but when the patients returned to the comfort of their own homes, they were often more critical of the food that was served.. Discussion. Strengths and limitations of the study The go-along method is yet not widely used in health research, but we consider it valuable in this study because it allowed us to observe the patients while assessing their experiences and interpretations (Kusenbach, 2003). It enabled us to identify discrepancies between actions and the spoken word, which was valuable. Due to this insight, we identified significant findings. Furthermore, it provided a more comprehensive picture of a practice situation as experienced by the individual, compared to the data to which an interview would have given us access (Kusenbach, 2003). Furthermore, this methodology enabled the researchers who collected the data to create a trusting relationship with the participants, which enabled them to talk freely about their experiences of, and practices connected with, mealtime challenges. Another strength of this study is its interdisciplinary research team, which was composed of nutritionists and nurses with practical and academic work experience. Finally, we have discussed the preliminary findings with health professionals and researchers from the field of respiratory and pulmonary care in COPD. The most important limitation of this study concerns the sampling of participants. The initial recruitment of participants relied on the identification of meal-related issues by nurses. Although the go-alongs’ format varied due to the setting and the participants’ condition, the data acquired still contributed thematically rich data. Our study includes an uneven distribution of male and female participants. The underrepresentation of males could have biased the results towards a female perspective. However, we found that significant findings were related to COPD rather than the participants’ gender. We were able to visit two out of nine patients at home after their hospital stays. The remaining patients felt too unwell to cope with a visit from the researchers, which meant we were unable to collect data on the most severely affected patients’ experiences at home. Even though the data were collected in one medical ward and one home care district, we consider the findings transferrable to similar settings.. This article is protected by copyright. All rights reserved.

(17) Accepted Article. Discussion of substantial findings It is well established that people eat poorly while in hospital. This is often blamed on hospital food. (H. L. Meiselman, 2009; Walton et al., 2013). However, issues related to inadequate food intake and consequent unintended weight loss are much more complex than they seem. One of our main findings was that, in the case of patients with COPD, mealtimes had shifted from being enjoyable social situations to practical tasks. It is well known that patients’ mealtime experiences are affected by many factors, including lighting, sounds, smells, emotions, the service, the food’s presentation and the food itself (Spence & PiquerasFiszman, 2014). The concept of ‘protected mealtimes’ (PMs) tries to accommodate this by using an intervention focused on unnecessary interruptions. PMs contain the following key principles: A focus on the meal and the patient, preparing the patient for the eating situation, making sure that the environment encourages eating, meal assistance, continuous observation and monitoring and making sure that the patient is eating (Ullrich et al., 2011). Porter et al. concluded that there is insufficient evidence for the implementation of PMs in hospitals and that more research is needed (Porter, Haines, et al., 2017; Porter, Ottrey, et al., 2017). Furthermore, qualitative studies of PMs in hospital and home care settings found that implementing PMs can allocate sufficient time and expertise to assist patients with eating (Dickenson, 2009; Ullrich et al., 2011), which supports the idea that mealtimes should be handled as cultural and social situations (Evans et al., 2005). Based on findings from a systematic review (Green et al., 2011) about the use of volunteers to provide mealtime assistance, Robinson (Robison et al., 2015) aimed to evaluate the impact of introducing trained volunteer mealtime assistants on dietary intake in a hospital setting. From a Danish point of view, involving volunteers in interventions is a rather controversial topic. Nevertheless, Roberts (Roberts, 2018; Roberts et al., 2014) anticipated that volunteers are likely to become increasingly important in an era when healthcare systems are generally limited both in terms of financial resources and the ability to recruit sufficient nursing staff. A narrative review about undernutrition in older people concluded that nutritional problems remain unrecognised and untreated (Agarwal et al., 2013). Barriers against good nutritional care include the fact that health professionals lack the necessary time, knowledge, skills and priorities to ensure good patient nutrition. Health professionals, including nurses, should be responsible for providing nutritional care, and nursing skills are important to preventing and treating undernutrition (Arvanitakis et al., 2009). Based on the current study’s findings and those of prior studies in the undernutrition field, we highlight the importance of viewing mealtimes as high priority tasks with an assigned responsibility. In the present study, we found that no one in particular took responsibility for setting up a health-promoting mealtime. The lack of a coordinated, systematic approach to the work. This article is protected by copyright. All rights reserved.

(18) Accepted Article. raises the question of whether ensuring the quality of mealtimes is a fundamental nursing task. In general, very little research has directly addressed the question of who is responsible for meals. However, an observational study from 2006 found, when assessing mealtimes in hospitals, that a focus on nutrition was given little priority compared to other nursing tasks (Xia & McCutcheon, 2006). Another study revealed that, although all staff recognised underweight as an important problem, there was a lack of shared responsibility and no coordinated approach to nutrition care in an acute medical setting (Ross et al., 2011). In our study, interruptions and disturbances caused by medication rounds, medical care, ward rounds and tasks connected with hospital admissions or discharges affected the mealtime atmosphere. However, this is not a unique observation. Kitson (Kitson et al., 2014) has named this trend in nursing a "task and time driven culture". She pointed out that the body of knowledge in nursing care tends to focus on studies that have explored the prevention of common complications (e.g. fall prevention and infection prevention) rather than systematically describing effective nursing interventions, such as those promoting sleep, comfort, personal hygiene, eating and drinking (Kitson et al., 2014). A retrospective data analysis of 4,507 hospital patients from twelve countries reported the prevalence of malnutrition as 39 percent (Kaiser et al., 2010), and according to Rawal & Yadav (Rawal & Yadav, 2015), the occurrence of underweight in patients with COPD is 2540 percent. Efforts to combat undernutrition have focused on providing meals that supply adequate energy and protein to meet patients’ estimated nutritional requirements and encouraging eating or the intake of nutritional supplements between meals (Walton et al., 2007, 2013). The Global Strategy for the Diagnosis, Management, and Prevention of COPD (Singh et al., 2019) also recommend that underweight patients take nutritional supplements as an adjunct to exercise training. However, in long-term interventions, compliance with these interventions is quite low (Ferreira et al., 2012). Despite the effects of nutritional supplements, the nutritional intake in people with moderate to severe COPD remains suboptimal. Roberts (Roberts, 2018) found that, in general, nutrition intake receives less priority than other nursing care activities, and the assistance nurses provided patients during mealtimes with was neither sufficient nor timely. In line with Roberts (Roberts, 2018), we also found that the task of serving meals to patients with COPD has become a routine job. with less or no focus on how to establish an environment that encourages patients to be interested in food and motivates them to eat. Conversations about comfort and the food’s taste, smell and texture were absent. We did not observe any professionals talking about the efforts made by the kitchen staff to prepare food using good, seasonal and organic ingredients or anyone explaining the importance of eating or the consequences of unintended weight loss.. This article is protected by copyright. All rights reserved.

(19) Accepted Article. Conclusion The present study’s findings underline the fact that no one involved in the nursing care of patients with COPD accepts clear responsibility for making mealtimes nourishing, aesthetic, social situations. Healthcare professionals are those most skilled at identifying nutritional needs, serving the food, monitoring nutritional status, motivating the patients and ensuring that the patients have adequate knowledge to prevent them from becoming underweight. The insight we have gained into experiences of and practices related to mealtime challenges in stable and unstable phases of COPD leads us to conclude that healthcare professionals must improve these practices. Further research is needed to develop and implement interventions that accommodate meal-related challenges in the case of patients with COPD.. Relevance to clinical practice This study provides contextual knowledge of a) the complexity of mealtime challenges and b) the absence of a coordinated, systematic approach to mealtimes, which might be valuable in the further improvement of the quality of nursing care and the prevention of unintended weight loss in patients living with COPD. Healthcare professionals care for patients with COPD in both hospital settings and primary care. Nursing care is, among other, about meeting patients’ fundamental needs, including providing sufficient nutritional intake. Our study has shown that there is room for improvement in patients living with COPD concerning the handling of mealtime challenges to improve the nutritional intake of patients with COPD. Based on the findings of the study, we have the following recommendations for clinical practice: . Pay attention to creating optimal mealtime situations for patients with COPD. The. mealtime starts before the food is actually served. Consider i.a. the placement of the patient, make sure that the patient gets time to eat without haste and avoid disturbances. Create an enjoyable social situation around the meal when possible.. . Despite many common symptoms and challenges in patients with COPD in general,. patients can have very individual challenges in relation to food and mealtime situations. We therefore recommend being thorough when collecting data regarding the patient’s preferences.. . Strive for continuity. Prioritize that the same professional serves the meal, and. subsequently clears the tray away. In this way, the intake can be observed and the health professional can discuss the meal with the patient and potentially identify mealtime challenges.. This article is protected by copyright. All rights reserved.

(20) Accepted Article. References Agarwal, E., Miller, M., Yaxley, A., & Isenring, E. (2013). Malnutrition in the elderly: A narrative review. Maturitas, 76(4), 296–302.. Arvanitakis, M., Coppens, P., Doughan, L., & Van Gossum, A. (2009). Nutrition in care homes and home care: Recommendations–a summary based on the report approved by the Council of Europe. Clinical nutrition, 28(5), 492–496.. Beck, M., Martinsen, B., Poulsen, I., & Birkelund, R. (2016). Mealtimes in a neurological ward: A phenomenological-hermeneutic study. Journal of Clinical Nursing, 25(11– 12), 1614–1623. https://doi.org/10.1111/jocn.13161. Carpiano, R. M. (2009). Come take a walk with me: The “Go-Along” interview as a novel method for studying the implications of place for health and well-being. Health & place, 15(1), 263–272.. Charalambous, A., Papadopoulos, R., & Beadsmoore, A. (2008). Ricoeur’s hermeneutic phenomenology: An implication for nursing research. Scandinavian Journal of Caring Sciences, 22(4), 637–642.. Collins, P. F., Elia, M., & Stratton, R. J. (2013). Nutritional support and functional capacity in chronic obstructive pulmonary disease: A systematic review and meta-analysis. Respirology (Carlton, Vic.), 18(4), 616–629. https://doi.org/10.1111/resp.12070. Dickenson, J. (2009). An exploratory study of patient interventions and nutritional advice for patients with chronic obstructive pulmonary disease, living in the community. The Journal of Endocrine Genetics, 8(1), 43–49.. Evans, B. C., Crogan, N. L., & Shultz, J. A. (2005). The meaning of mealtimes: Connection to the social world of the nursing home. Journal of gerontological nursing, 31(2), 11– 17.. Ferreira, I. M., Brooks, D., White, J., & Goldstein, R. (2012). Nutritional supplementation for stable chronic obstructive pulmonary disease. The Cochrane Database of Systematic Reviews, 12, CD000998. https://doi.org/10.1002/14651858.CD000998.pub3. Garcia, C. M., Eisenberg, M. E., Frerich, E. A., Lechner, K. E., & Lust, K. (2012). Conducting go-along interviews to understand context and promote health. Qualitative health research, 22(10), 1395–1403.. Green, S. M., Martin, H. J., Roberts, H. C., & Sayer, A. A. (2011). A systematic review of the use of volunteers to improve mealtime care of adult patients or residents in institutional settings. Journal of Clinical Nursing, 20(13‐14), 1810–1823.. Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field methods, 18(1), 59–82.. This article is protected by copyright. All rights reserved.

(21) Accepted Article. Kaiser, M. J., Bauer, J. M., Rämsch, C., Uter, W., Guigoz, Y., Cederholm, T., Thomas, D. R., Anthony, P. S., Charlton, K. E., & Maggio, M. (2010). Frequency of malnutrition in older adults: A multinational perspective using the mini nutritional assessment. Journal of the American Geriatrics Society, 58(9), 1734–1738.. Kitson, A. L., Muntlin Athlin, \AAsa, Conroy, T., & Collaborative, I. L. (2014). Anything but basic: Nursing’s challenge in meeting patients’ fundamental care needs. Journal of Nursing Scholarship, 46(5), 331–339.. Kusenbach, M. (2003). Street phenomenology: The go-along as ethnographic research tool. Ethnography, 4(3), 455–485.. Meiselman, H. L. (2009). 1 - Dimensions of the meal: A summary. I Herbert L. Meiselman (Red.), Meals in Science and Practice (s. 3–15). Woodhead Publishing. https://doi.org/10.1533/9781845695712.1.3. Naghavi, M., Abajobir, A. A., Abbafati, C., Abbas, K. M., Abd-Allah, F., Abera, S. F., Aboyans, V., Adetokunboh, O., Afshin, A., & Agrawal, A. (2017). Global, regional, and national age-sex specific mortality for 264 causes of death, 1980–2016: A systematic analysis for the Global Burden of Disease Study 2016. The Lancet, 390(10100), 1151–1210.. Odencrants, S., Ehnfors, M., & Grobe, S. J. (2005). Living with chronic obstructive pulmonary disease: Part I. Struggling with meal-related situations: experiences among persons with COPD. Scandinavian Journal of Caring Sciences, 19(3), 230– 239. https://doi.org/10.1111/j.1471-6712.2005.00345.x. Odencrants, S., & Theander, K. (2013). Assessment of nutritional status and meal-related situations among patients with chronic obstructive pulmonary disease in Primary health care—Obese patients; a challenge for the future. Journal of Clinical Nursing, 22(7–8), 977–985. https://doi.org/10.1111/j.1365-2702.2012.04184.x. Patton, M. Q. (2014). Qualitative research & evaluation methods: Integrating theory and practice. Sage publications.. Porter, J., Haines, T. P., & Truby, H. (2017). The efficacy of Protected Mealtimes in hospitalised patients: A stepped wedge cluster randomised controlled trial. BMC medicine, 15(1), 25.. Porter, J., Ottrey, E., & Huggins, C. E. (2017). Protected Mealtimes in hospitals and nutritional intake: Systematic review and meta-analyses. International journal of nursing studies, 65, 62–69.. Rawal, G., & Yadav, S. (2015). Nutrition in chronic obstructive pulmonary disease: A review. Journal of Translational Internal Medicine, 3(4), 151–154. https://doi.org/10.1515/jtim2015-0021. Ricoeur, P. (1976). Interpretation theory: Discourse and the surplus of meaning. TCU press.. This article is protected by copyright. All rights reserved.

(22) Accepted Article. Roberts, H. C. (2018). Changing the food environment: The effect of trained volunteers on mealtime care for older people in hospital. Proceedings of the Nutrition Society, 77(2), 95–99. https://doi.org/10.1017/S0029665117002804. Roberts, H. C., De Wet, S., Porter, K., Rood, G., Diaper, N., Robison, J., Pilgrim, A. L., Elia, M., Jackson, A. A., & Cooper, C. (2014). The feasibility and acceptability of training volunteer mealtime assistants to help older acute hospital inpatients: The Southampton Mealtime Assistance Study. Journal of clinical nursing, 23(21–22), 3240–3249.. Robison, J., Pilgrim, A. L., Rood, G., Diaper, N., Elia, M., Jackson, A. A., Cooper, C., Aihie Sayer, A., Robinson, S., & Roberts, H. C. (2015). Can trained volunteers make a difference at mealtimes for older people in hospital? A qualitative study of the views and experience of nurses, patients, relatives and volunteers in the Southampton Mealtime Assistance Study. International Journal of Older People Nursing, 10(2), 136–145. https://doi.org/10.1111/opn.12064. Ross, L. J., Mudge, A. M., Young, A. M., & Banks, M. (2011). Everyone’s problem but nobody’s job: Staff perceptions and explanations for poor nutritional intake in older medical patients. Nutrition & Dietetics, 68(1), 41–46.. Schols, A. M., Ferreira, I. M., Franssen, F. M., Gosker, H. R., Janssens, W., Muscaritoli, M., Pison, C., Rutten-van Mölken, M., Slinde, F., Steiner, M. C., Tkacova, R., & Singh, S. J. (2014). Nutritional assessment and therapy in COPD: A European Respiratory Society statement. European Respiratory Journal, 44(6), 1504–1520. https://doi.org/10.1183/09031936.00070914. Schutz, A., & Luckmann, T. (1973). The structures of the life-world (Bd. 1). northwestern university press.. Shalit, N., Tierney, A., Holland, A., Miller, B., Norris, N., & King, S. (2016). Factors that influence dietary intake in adults with stable chronic obstructive pulmonary disease. Nutrition & Dietetics, 73(5), 455–462. https://doi.org/10.1111/1747-0080.12266. Simonÿ, C., Specht, K., Andersen, I. C., Johansen, K. K., Nielsen, C., & Agerskov, H. (2018). A ricoeur-inspired approach to interpret participant observations and interviews. Global qualitative nursing research, 5, 2333393618807395.. Singh, D., Agusti, A., Anzueto, A., Barnes, P. J., Bourbeau, J., Celli, B. R., Criner, G. J., Frith, P., Halpin, D. M., & Han, M. (2019). Global Strategy for the Diagnosis, Management, and Prevention of Chronic Obstructive Lung Disease: The GOLD Science Committee Report 2019 (s. 139).. Spence, C., & Piqueras-Fiszman, B. (2014). The perfect meal: The multisensory science of food and dining. John Wiley & Sons.. Spradley, J. P. (1980). Participant observations. Holt, Rinehart and Winston.. This article is protected by copyright. All rights reserved.

(23) Accepted Article. Thompson, C., Cummins, S., Brown, T., & Kyle, R. (2015). What does it mean to be a ‘picky eater’? A qualitative study of food related identities and practices. Appetite, 84, 235– 239.. Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042. Ullrich, S., McCutcheon, H., & Parker, B. (2011). Reclaiming time for nursing practice in nutritional care: Outcomes of implementing Protected Mealtimes in a residential aged care setting. Journal of Clinical Nursing, 20(9‐10), 1339–1348.. Vermeeren, M. A. P., Schols, A. M. W. J., & Wouters, E. F. M. (1997). Effects of an acute exacerbation on nutritional and metabolic profile of patients with COPD. European Respiratory Journal, 10(10), 2264–2269. https://doi.org/10.1183/09031936.97.10102264. Walton, K., Williams, P., Tapsell, L., & Batterham, M. (2007). Rehabilitation inpatients are not meeting their energy and protein needs. e-SPEN, the European e-Journal of Clinical Nutrition and Metabolism, 2(6), e120–e126.. Walton, K., Williams, P., Tapsell, L., Hoyle, M., Shen, Z. W., Gladman, L., & Nurka, M. (2013). Observations of mealtimes in hospital aged care rehabilitation wards. Appetite, 67, 16–21.. World Health Organization. (n.d.). WHO | COPD management. COPD management. https://www.who.int/respiratory/copd/management/en/. Xia, C., & McCutcheon, H. (2006). Mealtimes in hospital ? Who does what? Journal of Clinical Nursing, 15(10), 1221–1227. https://doi.org/10.1111/j.13652702.2006.01425.x. This article is protected by copyright. All rights reserved.

(24) Accepted Article Case. Age. Sex. no.. Observation. Observation. hospital. home. 1. 85. F. Yes. Yes. 2. 78. F. Yes. No. 3. 69. F. Yes. No. 4. 78. F. Yes. No. 5. 66. F. Yes. No. 6. 90. F. Yes. No. 7. 79. F. Yes. No. 8. 87. F. Yes. No. 9. 63. F. Yes. Yes. 10. 77. M. No. Yes. 11. 72. F. No. Yes. 12. 79. F. No. Yes. 13. 64. M. No. Yes. 14. 62. F. No. Yes. 15. 90. M. No. Yes. Table 1: Presentation of the participants. This article is protected by copyright. All rights reserved.

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