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Disability and Rehabilitation
ISSN: (Print) (Online) Journal homepage: https://www.tandfonline.com/loi/idre20
Juggling the management of everyday life
activities in persons living with chronic obstructive
pulmonary disease
Rina Juel Kaptain , Tina Helle , Anders Kottorp & Ann-Helen Patomella
To cite this article: Rina Juel Kaptain , Tina Helle , Anders Kottorp & Ann-Helen Patomella (2021):
Juggling the management of everyday life activities in persons living with chronic obstructive
pulmonary disease, Disability and Rehabilitation, DOI: 10.1080/09638288.2020.1862314
To link to this article: https://doi.org/10.1080/09638288.2020.1862314
© 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
Published online: 20 Jan 2021.
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ORIGINAL ARTICLE
Juggling the management of everyday life activities in persons living with chronic
obstructive pulmonary disease
Rina Juel Kaptain
a,b, Tina Helle
a,b, Anders Kottorp
b,cand Ann-Helen Patomella
b aDepartment of Occupational Therapy, University College of Northern Denmark, Aalborg, Denmark;bDepartment of Neurobiology, Care Science and Society, Division of Occupational Therapy, Karolinska Institutet, Stockholm, Sweden;cFaculty of Health and Society, Malm€o University, Malm€o, Sweden
ABSTRACT
Purpose: Evidence regarding everyday life activities in people living with COPD is limited. Such evidence can improve our understanding when designing interventions for pulmonary rehabilitation that aim at increasing or maintaining participation in these activities. The aim of this study was to describe how peo-ple living with COPD experience and manage everyday life activities.
Materials and Methods: The sample comprised four males and four females with an age ranging from 65–87 years. Participants were interviewed in their own homes regarding experiences of performing and managing everyday life activities. Data were transcribed verbatim and analysed using content analysis. Results: Findings from this study comprised the theme“Juggling to manage everyday life activities with COPD” and three categories representing the elements of this theme: (1) consequences of COPD symp-toms, (2) adjustment of activities, and (3) contextual aspects.
Conclusion: This study found the participants with COPD juggling the management of everyday life activities. The juggle generated a manageable daily life, which came at the expense of making deliberate choices and prioritizing everyday life activities that were necessary for participation in valued and engag-ing activities in order to maintain health and well-beengag-ing.
äIMPLICATIONS FOR REHABILITATION
People living with COPD experience a complex juggling between the consequences of COPD symp-toms and contextual aspects when managing everyday life activities.
The participants had largely accepted their disease and adjusted to their situation.
The disease was still described as frustrating and generated less focus on making deliberate choices and prioritizing everyday life activities that are necessary for participation in valued and engag-ing activities.
Health professionals need to support people living with COPD in making deliberate choices in order to continue participating in valued and engaging everyday life activities as they affect health and well-being.
Pulmonary rehabilitation should focus more on supporting participation in social relations and on using everyday technologies.
ARTICLE HISTORY Received 23 March 2020 Revised 13 November 2020 Accepted 7 December 2020 KEYWORDS
ADL; activities of daily living; COPD; occupational therapy; pulmonary rehabilitation; participation
Introduction
Today, a variety of pulmonary rehabilitation interventions are offered to people living with chronic obstructive pulmonary disease (COPD) to improve symptom management and prevent further deterioration and exacerbations [1,2]. Interventions like smoking cessation therapy, patient education, nutritional therapy, medical treatment, physical training and pulmonary physiotherapy are com-monly offered as part of pulmonary rehabilitation [3–6]. Despite these interventions, people living with COPD have reduced ability to participate in a number of everyday life activities [2,7–9], com-prising both activities of daily living (ADL), rest and sleep, educa-tion, work, play, leisure and social participation [10]. The ability to participate in everyday life activities is affected and challenged by
the complexity of symptoms such as breathlessness, fatigue, pain, sputum production and cough that persons living with COPD experience [11,12]. These symptoms may further result in a need to rely on support from others [13–15]. Dependence on others has been associated with reduced health-related quality of life (HRQOL) [2,16,17] and may also be affected by the debilitating physical and emotional consequences related to COPD [18–21]. Furthermore, the participation in everyday life activities is closely connected to health and well-being and is essential to who we are and how we perceive life [10,22–24]. Hence, current pulmonary rehabilitation targets important aspects of rehabilitation. However, rehabilitation focuses primarily on illness, body function and symptoms [25,26], whereas aspects critical to activity and participation are rarely tar-geted for intervention. This means that people living with COPD
CONTACTRina Juel Kaptain rio@ucn.dk Selma Lagerloefs Vej 2, Aalborg, 9220, Denmark ß 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
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are potentially left with unmet rehabilitation needs, which may affect their health and well-being.
The need for targeting everyday life activities in pulmonary rehabilitation is reflected in national and international COPD guidelines and policy statements. For example, the Danish National Guidelines for Rehabilitation of Patients with COPD [27] describes lack of evidence for rehabilitation improving COPD patients’ ability to participate in everyday life activities. In the American Thoracic Society (ATS) and the European Respiratory Society (ERS) Policy Statements about pulmonary rehabilitation [28], ADL is highlighted as a recognized benefit of pulmonary rehabilitation that deserves increased awareness in future rehabili-tation. A few examples of how to improve everyday life activities in pulmonary rehabilitation are described in the AST/ERS Society Statement Key concepts and advances in pulmonary rehabilitation [2]. Here, strategies such as energy conservation during ADL or using leisure activities as educational topics concerning self-man-agement are given as examples. However, greater knowledge of everyday life activities is still required [2]. In a few studies that aim at supporting people with COPD in maintaining as much independence as possible, symptoms like breathlessness or dys-pnoea are targeted in interventions through participation in everyday life activities rather than focusing on exercises. In these interventions, adaptations and strategies are integrated in ADL through, for example, dyspnoea self-management and energy conservation techniques with the support of health professionals [29–31]. Maekura [32] included education, breathing control tech-niques and exercise training in combination with personalized occupational therapy in the intervention. Still, evidence for inter-ventions that directly target improvement in everyday life activ-ities remain sparse and guidelines to inform healthcare professionals are limited [33,34].
Another critical aspect related to this focus on everyday life activity is how it is defined and operationalized. This varies across health care professionals and researchers. There are especially two aspects of interest within these definitions; one aspect focuses on physical functioning or symptoms [35–37]; the other on ADL per-formance [7,8]. When reviewing the literature of ADL evaluations of people with COPD, it appears that most evaluations used in the literature apply an ADL definition referring to the physical performance in the activity. ADL performance that focuses on the doing of the activity is largely ignored. Although the definitions of ADL are related, they differ substantially and should therefore be targeted separately in the pulmonary rehabilitation. For example, walking or mobility is often described as ADL and is examined and evaluated in terms of underlying body functions by means of the six-minute walk test [38], step counters or acceler-ometer [39,40]. This contradicts ADL defined as tasks relevant to the unique context and individual to perform on a day-to-day basis that cover basic needs such as eating, staying clean and being appropriately dressed, as well as more complex tasks rele-vant for independent living such as transportation, cooking, shop-ping, cleaning and washing [10,41–43]. Everyday life activities refer to a multitude of daily activities in which people engage [10], and activities that ‘people do as individuals, in families and with communities to occupy time and bring meaning and purpose to life’ [44]. Further, it follows from these definitions, that ADL and everyday life activities should be described and evaluated focus-ing on the performance of the activity. This knowledge needs to be applied to pulmonary rehabilitation targeting the ability to participate in everyday life activities.
A few studies, though, have investigated aspects of experien-ces related to everyday life activities in people living with COPD.
Lindenmeyer et al. [45] explored the value of ADL with respect to how ADLs contribute to a meaningful life and Genoe & Zimmer [46] described the process and strategies utilized to manage and live well with COPD. Genoe & Zimmer [47] further found that leis-ure activities contribute to a meaningful life when living with COPD. Williams et al. [48] evaluated the qualitative effect of pul-monary rehabilitation and found that although rehabilitation did not reduce breathlessness, perceptions on and management of the disease changed and physical and social engagement increased. Besides, complex health transitions in persons living with COPD have been described to generate changes in roles and functioning, but still with self-management being challenging to learn [49,50]. Although these studies do focus on experiences related to everyday life activities and are rather close to the defin-ition used in this study, further knowledge is still needed of how everyday life activities are experienced, performed and managed from the perspectives of people living with COPD. Such informa-tion can improve our understanding when designing interven-tions for pulmonary rehabilitation that aim at increasing or maintaining participation in everyday life activities and possibly inform clinical guidelines. Therefore, the aim of this study is to describe how people living with COPD experience and manage everyday life activities.
Materials and methods
Design and sampleA qualitative research design using content analysis described by Graneheim and Lundman [51,52] was applied to explore how people living with COPD experience and manage everyday life activities.
The sample consisted of (N¼ 8) participants who had previ-ously participated in a quantitative study serving to investigate associations between HRQOL, ADL performance, use of everyday technology and selected demographic variables [53]. The inclusion criteria for the previous study, and hence the present study, too, were that participants were registered with a COPD diagnosis in the municipality. They were excluded if they were unable to understand Danish sufficiently to answer the questionnaires in Danish, or if they were living in nursing homes, and had a diag-nosed cognitive impairment or a visual or hearing impairment that could not be compensated for by technical aids. Participants were asked if they would consent to be contacted for a potential indicidual interview later. For the present study, participants were purposively [54] selected among those who agreed to be con-tacted. Based on data from the previous study, criterion sampling [55] was used to obtain variety with respect to gender, measures of ADL performance and HRQOL as well as variety in living status. See Figure 1 for the flow chart of criterion sampling of partici-pants. Variety within the sample was sought to increase the possi-bility of illuminating the research question with respect to a variety of aspects [51,56]. Eight participants who met the sam-pling criteria were contacted by telephone about the present study and asked if they would participate in an interview in their home, and all agreed to participate.
The sample comprised four males and four females with an age ranging from 65–87 years, and a mean age of 73.5 years. Lung function was measured using Vitalograph copd-6 (Vitalograph Ltd, Buckingham, United Kingdom), which showed a range of severity stage from II-IV (Table 1). The intention was to begin by interview-ing eight participants and then evaluate if more participants were needed in order to answer the research question sufficiently [57]. After the eight interviews had been performed, the researchers
decided that data covered significant variations as described within the method [51,52], and the amount of data from the interviews was deemed sufficient.
All participants in this study had participated in a pulmonary rehabilitation program focused on education about the disease and physical exercise within the Region of North Denmark. Moreover, they were all involved in another telemedicine research project and had an IPad at home, where they reported measures of physiological indicators (blood pressure, pulse, oxygen satur-ation, and weight) on a weekly basis [58].
Data collection
Semi-structured interviews were conducted in the homes of the participants and were based on an interview guide [59]. Data were collected during a 6-week period in October-December 2018 by the first author. Some of the participants were known to the first author from the previous data collection; others were only known via the telephone contact. The initial procedure involved obtaining informed written consent and giving verbal and written information about the purpose of the study and a guarantee of confidentiality. Overall, demographic information was gathered and a simple measurement of lung function (forced expiratory volume (FEV) 1% predicted) was measured. The interview ques-tions focused on the experiences of performing and managing everyday life activities. During the interviews, participants were encouraged to describe their activities during a typical day by asking “can you please describe a typical day. If you for example
start with your morning, how does it take place when you get up?” Moreover, if activities were experienced as challenging: “can you describe, in what way this activity is being challenging? can you describe how you manage to perform the activity anyway?” Follow-up questions were asked to achieve a thorough under-standing and description of their experiences of their everyday life activities. The first interview was performed as a pilot inter-view to test the interinter-view guide. As only minor adjustments were made, the interview was included in the analysis. All interviews were tape-recorded with a digital voice recorder. Each interview lasted between 36 and 54 min.
Data analysis
The first interview was transcribed verbatim by the first author (RJK). The next seven interviews were transcribed by three trained occupational therapy students according to transcription proce-dures as performed by the first author. The first transcription from each student was reviewed by listening to the recording in order to ensure its accuracy and with awareness of transcriptions being an interpretive process [60]. The transcriptions took place in paral-lel with the data collection.
The transcripts were analysed using inductive qualitative con-tent analysis [51,52]. This involved a process of moving from the specific and concrete data toward an abstract and general under-standing by using open coding and later creating categories and themes, still with the manifest approach being the primary. Performing the open coding, firstly, the text was read thoroughly Figure 1. Flowchart of criterion sampling procedure according to gender, ADL performancea and HRQoLb. Notes:aMeasured by ADL Interview [41].bMeasured by the Medical Outcomes Study Short Form 36 (SF36) [42]. ADL: activities of daily living; HRQoL: health-related quality of life.
Table 1. Characteristics and measures of ADL performance and health-related quality of life (HRQoL)– physical for the eight participants.
Participant (number) Age (years) Gender ADL performance (mean 2.57)a HRQoL - physical (mean 37.45)b Living status Classification of COPDc
1 78 Female 1.75d 31.85d Alone Stage II
7 80 Female 0.78d 51.71e Alone Stage IV
4 65 Female 5.56e 31.76d Cohabiting Stage II
5 67 Female 4.29e 41.93d Cohabiting Stage III
6 67 Male 4.48e 41.01e Cohabiting Stage II
2 69 Male 0.57d 17.63d Cohabiting Stage III
3 87 Male 1.84d 26.00d Cohabiting Stage III
8 75 Male 4.47e 48.00e Alone Stage II
aAs measured by the ADL-Interview [41]. b
Based on results of the earlier study of N¼ 80 [53] and measured by the Medical Outcomes Study Short Form 36 (SF36) [42]. cBased on the measure definitions of lung function from viralograph COPD-6.dBelow mean.eAbove mean.
several times and lines relevant to the aim were marked. Secondly, the marked sentences were transferred to a coding sheet and condensed into meaning units. Thirdly, the meaning units were given codes, which were then arranged in clusters based on the appearing patterns shaping sub-categories, catego-ries and later the overall theme (see example inTable 2). This pro-cess was performed in the original language (Danish) as recommended by van Nes et al. [61] to prevent loss of content. Themes, categories and sub-categories were later translated into English, integrating another level of abstraction. Data analysis was primarily conducted by the first author and the emerging codes, sub-categories and categories were critically discussed at the dif-ferent stages of the data analysis and reflected upon within the research group until common understanding was achieved.
Ethical considerations
This study complied in all aspects with the ethical principles of medical and social science research stipulated in the Declaration of Helsinki [62] and the formal requirements for research involving humans in Denmark [63]. Pursuant to the principles of the Deklaration of Helsinki, all data were treated confidentially, and participation was voluntary. Written consent was obtained from each participant before data collection, and participants were informed about the study and that they could withdraw at any time without any consequences. Confidentiality was upheld by following the General Data Protection Regulation (GDPR) with respect to collecting, processing and storing personal data [64]. The study was approved; GDPR reference number: FOU-UU-2018-003. According to the National Committee on Health Research Ethics in Denmark, an ethical permit is required in interview research projects only if the project also involves human bio-logical material [65]. Therefore, no additional formal ethical approval was required for this study.
Also, the interviews were planned according to the partici-pants’ preferred time of day to avoid any inconvenience. For peo-ple living with COPD, mornings were often characterised by cough and a slow start and little energy would be left in the afternoon. Therefore, most visits were planned around noon and performed in the participant’s own home to avoid the need for transportation. When performing the interviews in the participants homes the researcher strived to be humble and respectful when visiting and asking about how they experienced their everyday life activities.
Results
The findings of this study comprised the theme“Juggling to man-age everyday life activities with COPD” and three categories repre-senting the elements of the juggle: Consequences of COPD symptoms, Adjustment of activities and Contextual aspects. Each category also had sub-categories (seeTable 3). Juggling occurred both between the three categories and within each category.
Juggling to manage everyday life activities with COPD
The participants in this study experienced a complex juggle in dif-ferent aspects of everyday life. COPD symptoms were the reason for the experienced physical limitations, including breathlessness, cough and fatigue, and led to a constant awareness of the body and its signals. The participants expressed a need to use extra time and effort in almost all everyday life activities performed dur-ing the day, resultdur-ing in a dependence on others. The juggldur-ing of these elements was carefully reasoned on the adjustments of everyday life activities that were necessary to make in order to manage the life situation at hand. They adjusted to keep a certain level of physical activity to prevent deterioration while still strugg-eling to find strategies to be able to manage everyday life activ-ities and accept their situation. The participants had largely Table 2. Example of the process from a meaning unit to creating a theme using a coding sheet.
Meaning unit
Condenced
meaning unit Code Sub-category Category Theme
“So, when I feel bad, I can’t move myself, I can’t take a shower, I can’t get dressed. I can’t do anything. It is cruel. From one day, and the next day, when I have an exacerbation of my COPD– it takes at least 3 weeks to a month before I completely recover”
When I feel bad, I can’t do anything. Its cruel.
Symptoms affecting ADL Being aware of body Consequences of limitations related to COPD
Juggling the management of activities of everyday life with COPD
Table 3. Results represented by theme, categories and sub-categories.
Theme Categories Sub-categories
Juggling to manage everyday life activities with COPD Consequences of COPD symptoms Being aware of the body Use of extra time and effort
Accepting help while resisting dependence Adjustment of activities Thats just how it is
Giving up and letting go Staying active means everything
Contextual aspects The value of social relations
accepted their disease and adjusted to their situation; but at the same time, the disease was described as frustrating and affecting how they managed their everyday life activities.
Consequences of COPD symptoms
The participants experienced being limited through physical symp-toms due to COPD such as breathlessness, coughing, fatigue and exacerbations. These physical limitations meant that they needed to be aware of their bodily signals and include them in the manage-ment of how much time and effort they wanted to use and were able to use on each activity. The bodily symptoms also limited their ability to perform everyday life activities such as grocery shopping which led to a need for support from others. This support became an element of the juggle and could positively affect time and effort used in performance of everyday life activities, but the dependence on others was experienced as frustrating.
Being aware of the body
The participants described that in order to prevent deterioration, they had to be able to manage the disease in their daily lives. This led to a distinct attention to their body, reading the symptoms of their disease and recognizing how to act, such as use of pep whistle or breathing techniques, or when that was not enough, taking medi-cation. This led to constant awareness of their bodily signals. On the positive side, being skilled in reading these signals provided a feeling of confidence and security. The participants described that severe pneumonia had been prevented several times by relevant actions and procedures avoiding hospitalisation and this further enhanced their feeling of being safe.
I can prevent pneumonia with that [atomizer], I just know. And I have done that at least 3 times since [I got it], so as soon as it begins, I can feel it… Then I take the atomizer and begin with it. It has helped me so much, it really has. And it gives a great feeling of security to have that. (participant (p)5)
Exacerbations were described as part of daily life that most of the participants in this group needed to consider. Even though they had learned ways of preventing exacerbations, the exacerba-tions still appeared and severely influenced their everyday life activities; a condition that each time lasted several weeks and required a substantial amount of energy and perseverance.
So, when I feel bad, I can’t move myself, I can’t take a shower, I can’t get dressed. I can’t do anything. It is cruel. From one day, and the next day, when I have an exacerbation of my COPD– it takes at least 3 weeks to a month before I completely recover. (p5)
The participants described it as being constantly aware of their body’s signals and their reduced strength and vitality when reflecting on which strategies to apply to into their everyday life activities.
I have to be aware of how much I do in a day. (p4)
Use of extra time and effort
Another experience of the participants was that the limitations caused by COPD produced a need for using extra time and effort when performing everyday life activities. Personal ADLs were highly prioritized and preferably performed independently by most of the participants (e.g. getting out of bed, getting washed, getting dressed or eating) leading to a feeling of ability to man-age everyday life even though it required extra time and effort. When performing domestic activities like shopping, doing laundry or cleaning the home, even more time and effort were needed. In general, doing things slowly and being in need of breaks led to every activity taking extra time.
I take just one step at a time [on the stairs], and sometimes I stop for a break. If I come from the basement and have been taking a shower, I stop here in the living room. Then I come here and sit for a while before I move on to my bedroom upstairs. When I come up, I sit on my bed to recover. (p1)
Furthermore, the extra effort required when performing every-day life activities also caused a need for longer breaks. On the one hand, this was frustrating; on the other hand, it was accepted.
I can get exhausted. It’s not that I am tired. But I get lazy if you can say that. That now you just have to sit and knit for a few hours or watch television. (p4)
The possibility of being impulsive was experienced as changed because of the limitiations caused by COPD, and because extra time and effort were needed in the planning, for example if there was a hill or a flight of stairs on their way to an activity outside home. The participants needed to leave home early to make it in time – how early, depended on their condition that particu-lar day.
Being impulsive, it is just not happening like before. Just doing something quickly before you do something else, that doesn’t happen very often either. (p5)
Also, the participants described how exhaustion could come to a point where one lost one’s temper and the spouse might sud-denly be scolded without good reason. It was described as an undesirable way to react caused by a combination of frustration about the extra effort needed and insecurity due to the whole situation.
Accepting help while resisting dependence
The participants described being dependent on others as another consequence of COPD limitations. Help was experienced as invaluable support, whereas the dependence was experienced as unwanted and frustrating. Dependence was especially frustrating in everyday life activities that the participants would have pre-ferred to manage independently, for example taking a shower, doing grocery shopping or gardening. The dependence on others was further described as making daily life less flexible. One partici-pant explained how she rejected help from caregivers granted by the municipality because she wanted to decide for herself when to take a shower:
… I was offered help when taking a shower, but I said no to that. At the hospital, I got help, and I liked that, but I cannot get up in the morning and just say“now, I need to shower”, just because someone is coming to help. I want to decide by myself when I would like to shower. (p1)
Still, the participants felt grateful and safe when others were around to help and support whenever needed. It was provided by their partner, their children, neighbours, through the munici-pality; and sometimes, private help was booked, for example, to do gardening or shovel snow in the winter. For several partici-pants, an important resource was having their spouse nearby when taking a shower or for providing support in periods with exacerbations, which also made them feel safe.
Sometimes, at the beginning of my disease, I did not dare to be home alone. Then he [husband] stayed home with me, as I couldn’t be alone. (p5)
Sometimes help from others was temporary and could cause worry about how to manage without the support:
Yes, she (the neighbour) is nice to take me along when going grocery shopping, but I can’t count on it to continue. I don’t know. I have no children or anything, so I have no one to help me. (p1)
The participants described several everyday life activities where they needed help from others such as showering, cleaning, cook-ing, shoppcook-ing, transportation, using the computer or organizing their finances. Overall, the participants were grateful for the sup-port but frustrated by the dependence.
Adjustment of activities
The participants adjusted their everyday life activities by juggling elements such as acceptance, use of strategies and motivation of staying as active as possible. Their thoughts about how staying active could decrease deterioration were integrated with the activity limitations related to COPD by application of relevant strategies or sometimes by letting go of a desired activity. Thereby, the adjustment, to a high degree, included reasoning about and attitude towards everyday life activities with COPD. As an example, the participants described how they needed time to have a slow start to the day and take breaks when showering and dressing. On various levels, they had adapted to their situ-ation - they found it challenging but had no alternative: “That’s just how it is”. Furthermore, the participants experienced that some everyday life activities just had to be accomplished, and one participant described getting breathless when carrying the shopping basket but needed to manage anyway.
I get breathless when I walk with the shopping basket, but I do it because I cannot just say that I can’t. … it means everything to stay active (p5).
That’s just how it is
The consequences of the disease limitations permeated their daily lives, controlling which everyday life activities were performed, how and when. The participants described how they had become used to sensing their body and had adapted to the symptoms in their daily lives. The disease was described as a disadvantage that had become part of how they lived their life; and even though it was annoying, they could do nothing about it:
I don’t have much air in the mornings. That does not concern me – that’s just how it is. (p5)
Well, I may say that it does not bother me with the breathing, but it does, after all. When I’m walking up the stairs, I sure feel it in my breath, but that’s not something I make a fuss about. It has been like that for several years. It’s just the way it is. I simply have to take the time needed. (p1) Daily use of strategies made COPD an integrated part of every-day life. Climbing stairs caused loss of breath and the participants described different ways of managing. If possible, climbing stairs was avoided; otherwise, strategies were used such as walking slowly, taking breaks, e.g. on a chair halfway up the stairs, holding the railing with both hands and pulling oneself up. If things needed to be transported on the stairs, a basket or a bag could be a solution even though it was demanding.
Several participants mentioned how age was also a cause of reduced energy. They related to the aging process as part of nature, at the same time as they knew that the disease decreased their abilities further.
Giving up and letting go
In some situations, it seemed that too much time and effort were required due to fatigue and decreased energy to continue per-forming the everyday life activities. This could result in giving up on activities that used to be meaningful for the participants to perform. However, when “giving up” was accepted, the partici-pants no longer needed to consider whether to perform an activ-ity or not, which was experienced as a relief. Initially, after giving
up on performing an activity, the participants may have experi-enced this as a failure but after a while, acceptance meant that they did not consider that activity anymore. As an example, one participant had tried to walk up the stairs at his sons appartment several times, only to find out that he was too exhausted to par-ticipate in the social gathering when he finally arrived. When real-izing he should not try anymore and rather have his son visiting, the decision was experienced as a relief.
However, giving up on activities they had been used to per-form was not always that easy. Participants described how they had needed to give up on activities because they were no longer possible to perform, such as a joyful day eating lunch with good friends and attending an exciting lecture at the library could lead to too much exhaustion and was no longer doable:
I should have gone home after we had lunch. I was exhausted, so I will never do that again. (p4)
One participant described that he was used to help friends and family with everyday technologies but was no longer capable of maintaining this support. He experienced not having sufficient strength to stay updated on the technology and further to sup-port others in the use. The participants had also experienced how they had to give up on preparing hot meals or carrying groceries from the car into their home because it was too physically demanding for them, or how it was no longer possible to attend rehabilitation due to breathlessness. One participant described how she gave up her desire to do activities in the garden due to decreased strength:
I can’t move around the plants in the garden anymore. It is too hard. I have just always enjoyed being in the garden. (p5)
Another participant described how she would really like to move to a home without stairs, but she could not handle moving, and thought it could be a waste of effort if she did not live for long enough to enjoy it:
I can’t cope with a move. If I move and then die after a half a year… (p1)
In general, some everyday life activities required too much effort and the fatigue was the main reason for giving up and maybe later letting go, even though it was connected with sad-ness and loss.
Staying active means everything
There was a general perception among the participants that it was important to stay active in daily life in order to experience fewer limitations from the COPD and remain as independent as possible in everyday life activities. Through participation in pul-monary rehabilitation, the participants had learned that exercise was good for them, and they described feeling proud when they managed to exercise, attended gymnastics or swimming classes, or took their daily walk. Being active was therefore an element they juggled as a part of managing everyday life activities with COPD, trying their best to decrease the risk of deterioration.
It means everything to stay active. I also sing in the church choir, which means that you have to use your lungs differently, and your breathing is also important… I do not have the same energy as I used to. There are some things I really try to hold on to, and that is exercise and the leisure activities I attend– they are important. (p5)
However, the participants tended to focus on performing activ-ities considered to be active and not focusing on the activactiv-ities as engaging.
Well, there is no real goal. We stay active. In the Centre, there is music, knitting and everything. (p4)
When the participants focused more on activities being active than being engaging, they performed these activities with varying motivation. Some activities were performed because the person felt an obligation to do it:” Sometimes I go for a walk. Well, I have to”. (p1)
The participants were sure that being active also prevented deterioration. However, it took much effort to maintain activity, and the participants described different motivations for their need to be physically active and not have their symptoms deteriorate, for example, if they saw others with worse symptoms of COPD than themselves:
… I attend a course at [location]. I have been there twice, and there were some people much younger than me, maybe around 40–50 years. They wear oxygen masks. I see then that I do not have any problems in that regard. (p3)
Contextual aspects
As part of the context, the participants described how they valued social relations in different everyday life activities in relation to feeling secure and/or loved. Furthermore, context was experi-enced as comprising physical hindrances such as stairs, bathtubs or different weather conditions. Elements that hindered them from engaging in activities due to disease limitations challenged the participants, and now made everyday life activities even more challenging.
The value of social relations
Participating in social activities was described as highly valued, whether it occurred as family visits, celebration of birthdays or Christmas, leisure activities or more as part of the everyday life when being together with their spouse or eating at home with good friends. Having the husband or wife at home, particularly when taking a shower and being at risk of falling, was associated with a feeling of security. The feeling of being loved and taken care of was highly valued; and one participant described when their son and daughter-in-law came for the weekend and cooked and baked for the freezer. Help was not really required but was more like pampering as they thought she deserved home-cooked food.
When it gets time for dinner, I have this prepared food. My children made it for me. I just reach down the freezer– what would you like? … My daughter-in-law always bakes for me. Last time they were here, she baked three large cakes and muffins. And three white loaves of bread and some buns. (p7)
Another aspect of social relations appeared when being with others who had COPD. The participants described how they shared handling symptoms and exchanged ideas leading to an understanding of each others’ situations and a feeling of connect-edness within the group:
We are around 8 people at the group [COPD choir]. We have been together for a few years now, and we sing two hours a week. Well, we don’t, we practice breathing techniques and it is so good. We talk to each other… both about techniques, and about what we do and what has been good to do. (p5)
Nevertheless, participants explained how the disease could be the centre of every conversation and how they sought to partici-pate in groups where nobody knew about the disease. Here, they could be seen as “normal”, where focus was not exclusively on the disease. However, that meant hiding the disease and main-taining exercises even when it was very demanding. It provided a feeling of both being free and exhausted at the same time:
I am comfortable being in a team, where no one knows about it [the COPD]… .otherwise, there is too much talk about the illness. (p5)
… there is competition, when in a team where no one is ill. It might also be a little stupid of me, because I think‘I can do that’ and I get really exhausted. I really do. (p4)
Another way of maintaining social relations and abstaining from demanding transportation was using the internet for interac-tions. Several participants communicated with their exercise groups or leisure activity groups through Facebook. Other exam-ples of using social media were communicating with family through Messenger or being on Snapchat and Facetime with their grandchildren. The ability to manage social media was described with pride:
Snapchat and Whatsapp and Facetime. My grandchildren say‘you are the most hip granny I know’. (p4)
However, valued relations were not possible for all participants. One participant experienced loneliness and described how she missed her deceased husband and having people around as before. She could no longer participate in leisure activities because it was too demanding to get out of the house and she could no longer drive the car.
I wish I had the strength to attend leisure activities. I would like to, then you also get out a little with other people. But that is not how it is. (p1) Even though social relations were highly valued, a discrepancy prevailed between the participants’ needs for social connection and the possibility of being part of social activities, and loneliness was also an aspect of daily life.
Physical context being a hindrance
When living with COPD, the participants experienced several hin-drances in their physical surroundings that made everyday life activities challenging. Stairs were described as a major challenge. Some participants sought to avoid stairs, which might result in not visiting their children or friends anymore. The bathtub was also a severe problem for those who had one because climbing in and out was too demanding in relation to the physical limita-tions they experienced. One of the participants described how she was forced to shower in the basement instead of at the first floor next to the bedroom because there was a bathtub. She had to climb the challenging stairs instead. Another participant did climb in and out of the bathtub while holding the water pipes, feeling insecure, getting exhausted and being at high risk of fall-ing. The participant described how he was exhausted after the shower when he needed to dry and get dressed:
When I get out, I am more dead than alive. I get out from the shower and go sit on the toilet, I put a blanket or a towel on the floor and dry my feet there. Then I sit there and dry. There is heat out there. Well, about one and a half, I don’t know how long it takes. I guess it takes a half hour or three quarters before I have my clothes on. (p2)
Several things in their surroundings adversely affected the par-ticipants’ breathing. They mentioned candlelight, flowers, perfume and the Christmas wreath, as well as wind, fog and high tempera-tures. Also, when interacting with their context, a few participants were hindered from using different everyday technologies. This was primarily due to lack of motivation to use everyday technol-ogy or diminished ability to use it correctly:
I dont understand how to send a text message. I never made it known to myself how to do that… I can enter the computer, but I have not looked into how to enter Facebook or something like that. It doesnt really interest me. (p1) In contrast to the physical context being a hindrance, several participants used assistive devices such as a walker, shower
bench, toilet seat and gripper, which meant that they compen-sated for some of the physical limitations related to their disease.
Discussion
As demonstrated by the findings of the present study, people liv-ing with COPD experience a complex juggle with the consequen-ces of COPD limitations and contextual aspects in managing everyday life activities. The participants demonstrated constant awareness of the current state of their symptoms and, therefore also needed to use adaptive strategies, meaning that bodily awareness determined their participation in everyday life activ-ities. All of the participants had been diagnosed with COPD for several years (Table 1) and had had time slowly to integrate their symptoms and activity limitations related to COPD into their daily lives with the disadvantages it imposed such as dependence on others’ help, use of extra time and effort and loss of participation in everyday life activities.
Overall, the participants managed everyday life activities through increased awareness of their bodily limitations and adjustments in their daily lives. The constant awareness and jug-gling could be a source of worry, however. This was evident when the juggle required the participants full attention and they were so careful not to skip any of the elements that they did not even notice a need for everyday life activities being engaging or valuable, which is essential when it comes to health and well-being [10,66]. Achieving health and well-being links to engage-ment in everyday life activities and can contribute to balance and participation in life [10], which is why engaging activities are of great importance. Studying the participants’ physical measures of HRQOL (Table 1) shows that their measures vary, but in general their HRQOL is low [67] as is their engagement in everyday life activities. One explanation of the lack of participation in engaging everyday life activities combined with a low HRQOL could be that COPD often emerges over a long period and adjustments and adaptation of everyday life activities evolve continuously [68]. HRQOL, health and well-being are related issues [22] that health professionals strive to improve, and therefore this issue requires further investigation.
Acceptance and adaptation to one’s living conditions are crit-ical when living with a chronic disease [68]. However, in the pre-sent study, participants seemed to have accepted and adapted too well. With the statement used by several of the participants: “That’s just how it is”, they indicated acceptance and adaptation, but to some extent, also resignation as described by Lindenmeyer [45]. A reason for this resignation may be that they found it too difficult to improve their situation, as also found among patients with end-stage COPD [69], where patients experienced their lungs as damaged beyond repair and did not believe in positive change. This might explain a letting go of everyday life activities that are not yet necessary to let go of, and not asking for help that may have supported the maintenance of valued everyday life activities [69]. The participants in this study had “come to terms with, accepted and adapted to life in the here and now” and as such let go of everyday life activities that earlier brought meaning and engagement, findings that have previously been described among people with COPD [50]. Health professionals therefore need to be aware of and support people living with COPD in detecting and maintaining engaging and valued activities as they do affect health and well-being.
The complex juggle experienced by the participants in this study can be related to concepts of occupational competence and occupational identity as described in the Model of Human
Occupation (MOHO) [24]. Occupational identity is created through participation in occupations (occupations being synonymous with everyday life activities) and by integrating elements such as the persons experiences of doing, ones role identity in doing and by doing what one finds interesting and pleasurable to do. Occupational identity is interrelated with occupational compe-tence, which captures the skills and the ease with which identity is transformed into action. The participants in this study had evolved an occupational competence by applying strategies of doing things slowly, taking breaks, using the atomiser or medica-tion to prevent pneumonia and by staying active despite their disease. However, their occupational identity was affected by their severely reduced or completely absent ability to perform activities out of interest or pleasure, since all focus was on juggling neces-sary everyday life activities which consumed all their effort and energy. Social gatherings, leisure activities outside home or gar-dening were dropped, which according to MOHO can affect the occupational identity and therefore their quality of life. Additionally, Genoe and Zimmer [47] found that leisure activities contributed with richness and meaning to life, even though also causing breathlessness.
From a rehabilitation perspective that focuses on everyday life activities, we find it interesting that when asking this population about how they managed everyday life activities, they primarily focused on their bodily symptoms and the importance of physical training. One potential interpretation that is both relevant and interesting is that their bodily awareness determines the activities of the day. Another explanation may be that this reflects the focus that this population is met with by today’s rehabilitation healthcare professionals. Given the lack of guidelines on ADL and the fact that current rehabilitation interventions target smoking cessation, nutritional therapy, medical treatment and physical training, it is perhaps not that surprising that people living with COPD are guided to have this bodily focus. However, considering how the types of activities most often given up on when living with COPD are connected to leisure and engagement (e.g. social-izing, relaxation and pleasure) rather than obligatory activities required for self-sufficiency like ADL [70], we must remember in a rehabilitation context the value and necessity of not only focusing on disease management but also on quality of life in relation to engagement and participation in everyday life activities that bring meaning and value.
As the goals of pulmonary rehabilitation are“minimizing symp-tom burden, maximizing exercise performance, promoting auton-omy, increasing participation in everyday activities, enhancing (related) quality of life, and effecting long-term health-enhancing behavior change” [2], we as health professionals must remember to address all the elements and not only the symp-toms and exercise parts. Exercise training to improve skeletal muscle function does lead to gains in exercise capacity [2,26,71], but transfer to ADL does not automatically occur [72–74]. People living with COPD should be offered support in making more deliberate choices and prioritise their everyday life activities, and thereby continue to participate in valued or engaging activities despite their disease-related limitations [75,76].
As to the findings regarding contextual aspects (Table 3), social relations were highly valued by the participants in this study. When describing social relations, emotions such as love, connect-edness and feeling secure were expressed in relation to both fam-ily members and team mates. Knowing that one belongs and has a supportive network is known to be another basis of well-being [77]. However, there was also a discrepancy between the need for social connection and the ability to participate in social activities
due to physical limitations and symptoms related to COPD. Some of the participants were hindered from leaving their homes, which influenced their ability to socialize, as also found by Williams et al. [78]. A way to socialize from home is by using everyday technology, as several of the participants in the present study did, in order to stay socially active and connected. Other participants were unable to use everyday technology for social relations and stated that they felt lonely. This is in line with Chopik [79] who also found an association between use of social technology and mental and physical health, mediated by loneliness among older adults with and without chronic illness. Especially when people cannot leave home, technological solutions for maintaining social contact are obvious. Altogether, this knowledge shows the need to also support social relations and use everyday technologies within pulmonary rehabilitation [53,79].
Future research should explore how everyday life activities and everyday technology use can contribute to current pulmonary rehabilitation in order to increase health and well-being. This could be performed through design of intervention plans follow-ing feasibility and pilot testfollow-ing.
In conclusion, through findings from this study, we have pro-vided further insights into how people living with COPD experi-ence and manage everyday life activities. A complex juggle was experienced within and between the three categories (1) conse-quences of COPD symptoms, (2) adjusting activities and (3) con-textual aspects which led to a manageable everyday life, though a constant awareness of physical symptoms and possible adapta-tions. The juggling of these elements was carefully reasoned on the adjustments of everyday life activities that were necessary to make in order to manage the life situation at hand. The partici-pants expressed a need to use extra time and effort in almost all everyday life activities, often resulting in a dependence on others. They adjusted to keep a certain level of physical activity to pre-vent deterioration while still struggeling to find strategies to be able to manage everyday life activities and accept their situation. The participants had largely accepted their disease and adjusted to their situation; but at the same time, the disease was described as frustrating and generated less focus on making deliberate choices and prioritizing everyday life activities that are necessary for participation in valued and engaging activities in order to maintain health and well-being.
Methodological discussion
To ensure overall trustworthiness [51,52], accurate explication of the research process was attempted by giving examples of the analysis. Using the criterion sampling procedure based on meas-ures from an earlier study made it possible to gather a sample encompassing a variety of components in terms of gender, living status, ADL performance and HRQOL. This may explain how we achieved proper variety and richness with eight participants and may strengthen credibility. Though, the sample was relatively homogeneous in terms of possibilities in participating in rehabili-tation and further connected to the telehealth care project. Since telehealth care is becoming a more general approach this is, how-ever, the context of most people living with COPD in Denmark. Some of the participants in this study were known to the inter-viewer from the previous data collection possibly affecting the preunderstanding of both the participant and the interviewer. This was an awareness during the interviews seeking to ask ques-tions equally and openly, though with respect for the established relation. Furthermore, there was an awareness of this within the research group during the analysis process.
Another element to strengthen credibility is the participants having experiences of the phenomenon studied and being able to tell about it [52]. Being participants in earlier studies they were familiar with this role and had a certain awareness of their situa-tions. However, they may also have had a preunderstanding of which information was desired which also required the viewer to be clear in the questions asked. A semi-structured inter-view guide was used to direct the interinter-views and prevent the preunderstandings to further affect the answers, and all authors were included in the analysis process, enhancing dependability.
The categories in this study were found by using an inductive approach, searching for patterns of similarities and differences within the interviews [52]. As the participants in this study had adapted to their situations and were not always conscious of how they incorporated these strategies into their daily lives, an ethno-graphic study design including observations of everyday life activ-ities could have contributed further in-depth knowledge. However, this study was determined primarily to use a manifest approach and thereby focus on what is said by the participants rather than analysing according to an underlying theory [52]. However, a more specific and concrete analysis was made in the sub-categories and categories moving to a more abstract analysis of the theme, still within the manifest approach.
Acknowledgements
The authors thank the participants who took part in this study.
Disclosure statement
The authors report no conflicts of interest in this work.
ORCID
Rina Juel Kaptain http://orcid.org/0000-0002-0603-5621
Tina Helle http://orcid.org/0000-0002-2819-4471
Anders Kottorp http://orcid.org/0000-0002-8976-2612
Ann-Helen Patomella http://orcid.org/0000-0003-2667-4073
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