Scandinavian Journal of Occupational Therapy. 2014; 21: 392–399
ORIGINAL ARTICLE
Occupational performance and strategies for managing daily life among the elderly with heart failure
EVA-BRITT NORBERG1, KURT BOMAN2, BRITTA LÖFGREN1 & MARGARETA BRÄNNSTRÖM3 1
Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå, Sweden, Research Unit, Medicine Skellefteå, Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden, and 3Department of Nursing, Umeå University, Umeå, Sweden
2
Abstract Aim: The aim of this study was to describe experiences of limitations in occupational performance and strategies for managing daily activities among the elderly with chronic heart failure (CHF). Methods: Ten participants from primary healthcare with a confirmed diagnosis of CHF were interviewed. The interviews were analysed using qualitative content analysis. Results: The first theme, “Redefining an active life, aware of one’s impaired body”, was based on four sub-themes: realizing one’s limited activity ability; striving to preserve an active life; focusing on meaningful activities; and changing vs. not changing habits and roles. The second theme, “Planning activities and balancing the degree of effort”, was based on three sub-themes: limiting, organizing, and rationalizing activities; adjusting activities to today’s ability; and using technology and adapting the environment. Conclusions: Elderly people with CHF are struggling with an ongoing process of occupational adaptation due to periodical physical decline and fluctuating day-to-day ability. This highlights a need for information on strategies from a holistic perspective and client-centred occupational therapy interventions.
Key words: qualitative design, occupational therapy, occupational balance, occupational adaptation, ageing, activities of daily living
Chronic heart failure (CHF) has a substantial impact on activities of daily living, leading to dependency in carrying out activities important to independent living (1-4). Symptoms such as breathlessness and fatigue are characteristic (5). In the elderly with CHF, physical rather than mental fatigue seems to have negative impact on activities of daily living (4), but comorbidities and normal ageing must also be considered (5). Old people’s experiences of living with CHF are characterized by distressing symptoms, compromising physical functioning, feelings of powerlessness and hopelessness, and social and role dysfunction (6). Despite this gloomy perspective elderly people with CHF seem to carry out activities in spite of
perceived strain (3) and demonstrate a strong desire to live as normally and independently as possible (7,8). Previous studies describe people’s experiences of living and coping with CHF in a comprehensive way (6,9,10), some mention more specific strategies of handling daily activities, e.g. taking a rest, slowing down, planning (9-11) support from their family (6), and use of assistive devices (4,9). However, these studies are not sufficiently detailed for the purpose of deepening the knowledge about occupational therapy interventions. Thus, in order to improve their rehabilitation, there is a need for a deeper understanding of their occupational performance. The aim of this study was to describe experiences of limitations
Correspondence: Eva-Britt Norberg, Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, 901 87 Umeå, Sweden. Tel: +4670-2918321. E-mail: [email protected] (Received 29 October 2013; accepted 1 April 2014) ISSN 1103-8128 print/ISSN 1651-2014 online 2014 Informa Healthcare DOI: 10.3109/11038128.2014.911955
ADL strategies for the elderly with CHF Table I. Participants’ characteristics, n = 10. Women
Men
Total
n
n
n
Gender
7
3
10
Single
4
0
4
Private house
1
1
2
Apartment
6
2
8
Housing:
Used assistive device
6
0
6
Used home-help service
2
0
2
Granted allowance for home modification
4
0
4
2
3
5
Self-reported NYHA class: II III
4
0
4
IV
1
0
1
Self-reported diseases and infirmities of old age other than cardiovascular disease: Musculoskeletal disorders
6
2
8
Respiratory disorders
3
1
4
Hearing disorders
2
1
3
Orthopaedic disorders
2
0
2
Visual disorders
2
0
2
Cancer
0
2
2
Stroke
1
0
1
Dizziness
4
0
4
Notes: NYHA II – Slight limitation of physical activity: comfortable at rest, but ordinary activity results in fatigue, palpitations, or dyspnoea; NYHA III – Marked limitations of physical activity: comfortable at rest, but less than ordinary activity results in symptoms; NYHA IV – Unable to carry out any physical activity without discomfort: symptoms of heart failure are present even at rest with increased discomfort during any physical activity.
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relatives (n = 3); living in residential care home (n = 2); and four declined to participate. Ten participants, seven women and three men aged between 74 and 91 years (mean 81 years) participated in the study. Table I gives the basic characteristics of the participants. Apart from cardiovascular disease, nine of the 10 participants reported other diseases and infirmities of old age. All the participants classified their CHF symptoms in NYHA II–IV, according to the New York Heart Association classification (13). Procedure and interviews Information letters describing the content of the study and the procedure were sent to the potential participants. After one week, further oral information was given by phone and those contacted either consented or declined to participate in the study. Interviews were carried out by the first author and took place in the participants’ homes. All interviews were audiotaped and lasted between 50 and 90 minutes. The opening question was: “Please tell me how an ordinary day for you is. Please give me some examples.” After that came a further question: “Has it changed, or maybe not changed, since you got your heart condition?” Then supportive follow-up questions were asked for reasons of clarification and to continue the conversation. Requests such as: “Tell me about situations when you feel you cannot do the activities you want to do” and questions such as: “What solutions have you found?” and “What do you think?”, “What happens?”, and “How do you feel about that?” were used to elicit further information. Answers to questions concerning demographics, classifying NYHA classes (13), and the presence of comorbidity were also documented. The authors pre-understanding
in occupational performance and strategies for managing daily activities among elderly persons with chronic heart failure living at home. Material and methods Design A descriptive qualitative design was employed. Participants Of a population of 40 participants from a previous study population (3,4,12), 22 were considered for inclusion in this study, since 18 had died. Of these 22, eight were excluded for various reasons: dementia (n = 3); serious cognitive disorders communicated by
The analysis was carried out by a PhD student with clinical experience in the area, and two experts with long experience in the field of CHF clinically and scientifically, and scientific expertise. The represented professions were physician, occupational therapist, and registered nurse. Data analysis The interviews were analysed using qualitative content analysis (14). Qualitative content analysis focuses on both the subject and the context, comparing similarities and differences with regard to the phenomena studied. In this study a thematic content analysis was conducted. A theme is a thread of an underlying meaning through condensed meaning
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units, codes, or categories on an interpretive level (14). The analysis was conducted by the four authors in cooperation. First, the interviews were transcribed verbatim and the resulting text was read through several times to gain an understanding of the whole. Second, content relating to the aim and meaning units was independently identified and discussed. In the third step, these meaning units were abstracted and labelled with a code. In the fourth step, codes with a mutual meaning were grouped together and abstracted into sub-themes and themes. During the process, the four authors continuously considered and moved back and forth in relation to codes, sub-themes, and themes in order to arrive at a consensus concerning the interpretation and to increase the trustworthiness of the analysis. Approval for the project was obtained from the Regional Ethics Review Board in Umeå, Sweden (Dnr 09-137). Participants who felt they needed rehabilitation or care were recommended to contact their primary healthcare centre. Results In the thematic analysis, two themes and seven subthemes were identified (Table II). They are presented below and are illustrated with quotations from the interviews. Redefining an active life, aware of one’s impaired body Redefining an active life, aware of one’s impaired body means realizing one’s limited activity ability, striving to preserve an active life, focusing on meaningful activities, and changing vs. not changing habits and roles. Realizing one’s limited activity ability. The participants related their limited activity ability to heart failure, but also to ageing and other diseases. Physical fatigue could occur suddenly, and impaired endurance made it hard to complete the activity. “I think I must bake a sponge cake or something. But I don’t do it because I can’t finish it. Then I get very tired . . . in my back.” Furthermore mental fatigue, such as not having the energy to start an activity, was described as a problem. Breathlessness led to the avoidance of strenuous activities, e.g. going for a walk or climbing stairs, and could be aggravated by external factors such as cold or warm weather. Some participants described how in the course of time they learnt to reduce the pace in order to manage activities. Varying degrees of strenuous work with the arms could also provoke fatigue and breathlessness: “If I’m just going
to wash up a saucepan and I’m too enthusiastic, then I have to sit down.” The ability to be active seemed to change periodically and diseases and injuries such as depression, vertebral compression, other fractures and asthma at times impaired their daily activities. Experiencing dizziness and a fear of falling were described, e.g. during a visit to the grocery shop: “little children can come running and . . . I’m so afraid that then I’m going to fall. It seems awful to think. . .. Oh! Don’t come close to me. I don’t fall because I hold on to something hard but I am afraid I’ll fall and if I fall I could break my leg.” Striving to preserve an active life. The participants described sometimes contradictory strategies for preserving and finding the motivation to lead an active life. They tried to have a positive outlook on life and motivated themselves to be active: “It can be so boring . . . I can’t sleep and. . .. Then I think if I just lie here and moan by myself I will die quicker.” On the one hand, they accepted change and planned to change their lives before they were forced to do so, e.g. change their accommodation, which gave them a sense of having the situation under control. On the other hand, struggling against change motivated them to carry out activities, e.g. to continue to live in a private house despite the fact that their partner wanted to move to an apartment. Participants performed activities they thought could help them to preserve their physical and cognitive skills, e.g. going for a walk, playing bridge, or solving crosswords. Some had learned over time to handle the breathlessness, irregular heartbeat, and the sudden rising anger when they could not finish an activity by taking a break or changing the activity. Nevertheless, anxiety could still make them withdraw from an activity. Focusing on meaningful activities. Participants focused on meaningful activities, described as a diversity of activities depending on their physical ability and life situation. Independence in daily life was a goal and some exerted themselves to the full in order to manage a visit to the WC, while others described the importance of buying groceries and cooking for themselves, to work up an appetite. Contact with family and friends stood out as meaningful, and they described how they helped children, grandchildren, and friends according to their ability. It was important to have a supportive function and to be needed. One participant described her support of a disabled son: “I think it’s him I live for. . .. Because I think . . . he needs me so much. And then I can fold my hands together and say now I’m done.”
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Table II. Sub-themes and themes in the qualitative content analysis. Sub-themes
Themes
Realizing one’s limited activity ability Striving to preserve an active life Focusing on meaningful activities Changing vs. not changing habits and roles
Redefining an active life, aware of one’s impaired body
Limiting, organizing, and rationalizing activities Adjusting activities to today’s ability Using technology and adapting the environment
Planning activities and balancing the degree of effort
Changing vs. not changing habits and roles. Participants described different experiences of being or not being able to adapt their activity performance and change habits and roles. One participant said: “Yes . . . that’s almost automatic. If I can’t manage to do something I have to find another way to do it.” Another said: “But it’s most difficult if you have been quick in everything you’ve done and been well until you’re 75 and then you suddenly have to slam the brakes on, it’s very hard.” On the one hand, participants disregarded their decreasing activity ability and exerted themselves too much one day which forced them to rest the whole of the following day. For some, it was crucial to keep up appearances, e.g. the participant who drove the car 100 metres rather than risking being seen to walk slowly, but later she could adapt to her disabled husband: “Then I go at his pace, and it’s fine. He doesn’t move so quickly with a walker.” On the other hand, information given to the participants could suddenly initiate a process of change in habits and roles: “It’s called a philosophy of life. I’ve started to think a bit more about how I have lived and how, how I can live [after the doctors explained]”. Participants experienced a change in roles from independence to dependence on help from others. They used home-help services for personal care and household chores and relatives and friends were supportive when they had to perform physically demanding activities such as taking care of the car, cleaning, and shopping. Relatives sometimes doubted their ability, e.g. to drive the car, and were unable to accept that the participants could no longer be supportive of them: “I’ve said now it’s over, them coming here for their birthdays and me making cakes and everything. And then my grandchild, it’s her birthday in a fortnight, says . . . I’ll come to you on Saturday.” Participants also described how they withdrew from family gatherings and club activities when they were no longer able to perform their part in the activities, e. g. washing up dishes after dinner, weaving, or raking the allotment. Others discussed matters and found ways to facilitate their participation in collaboration with others.
A reduced capacity to perform activities also threatened their roles as a man or a woman. A man living on the third floor described how difficult it was to carry groceries up to his apartment: “But then I feel that I just want to leave the shopping on the stairs and go up empty handed, but you don’t do that . . . as a man I can’t accept that I can’t manage it . . . that would be pathetic.” Women described how lazy they felt when they rationalized cooking and household chores and their annoyance when the housework was no longer done as well as before. But new habits also made it possible for them to fulfil their housewifely role even though they could not perform all the tasks independently, e.g. sorting dirty clothes before the husband completed the washing or in exchange for help with the housekeeping inviting the daughter to dinner. A woman described how she baked a cake: “I sit and read the recipe and he [my husband] does the work. So I say, don’t beat it too hard [laughs]. How does that feel? Yes, I think it’s quite fun [laughs].” The role of family caregiver was intimately described by participants who lived or had previously lived with a disabled family member. They described stressful days when they had difficulties setting limits, often prioritized their relatives’ needs over their own, and the pain when they were no longer able to continue as a family caregiver. Planning activities and balancing the degree of effort Planning activities and balancing the degree of effort means limiting, organizing, and rationalizing activities, adjusting activities to today’s ability, using technology, and adapting the environment. Limiting, organizing, and rationalizing activities. The participants described different ways of planning their activities. They limited their level of ambition and the extent of the activity, e.g. they only baked small batches, made the bed only when they were expecting guests, and did not put the vacuum cleaner away when they were going to continue the vacuumcleaning the next day. They organized their tasks in
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new ways, regarding both time of day and adapting to the environment. Strenuous activities such as washing and shopping were done more frequently in order to reduce the effort and meetings with friends were arranged in the daytime. Other exhausting activities, such as walking and climbing stairs, were efficiently organized by coordinating shopping and by gathering items to be taken upstairs just once a day on the stairs. They also rationalized cooking, buying ready-made or semi-cooked food products, and cooked larger portions of food to last for several days: “I keep stuff in the freezer at home, so if I feel ill, you know, I always have something that I have already prepared in the freezer.” Adjusting activities to today’s ability. Participants described how fatigue and shortness of breath varied from day to day, often in an unpredictable way. Despite this, they managed their activities, listened to their body, and adapted to their current ability by adjusting their pace, changing to another less strenuous activity, or continuing on another day. Resting was described as a way of taking care of oneself, as shown in this quotation about cleaning the bedroom: “I vacuum the bed first . . . and then I rest . . . a bit and then I vacuum under the bed . . . and you have to bend down . . . and so . . . I rest at intervals during the time . . . in the end I get it done.” Rest during an activity did not necessarily imply inactivity but could also include leisure time for crosswords, books, music, and contemplation of life. Using technology and adapting the environment. Using everyday technology, assistive devices, and adapting the environment in different ways were strategies employed to reduce strain and facilitate the performance of activities more safely. These strategies reduced the strenuous use of arms and legs, as in walking long distances, lifting, and carrying, and enabled more seated activities, which also compensated for dizziness and fear of falling. Participants described the importance of everyday technology and had increased their use of mechanical equipment such as motorized lawn mowers and electric kitchen devices. Transport by car, sometimes as part of a community mobility service, was widely used for shopping, leisure, and social interaction as even walking short distances could be too strenuous and the outdoor environment could be too demanding, if the terrain was hilly, for example. The telephone and sometimes internet-based communication also provided valuable opportunities for social contact with family and friends. Assistive devices were described as facilitating activities but, sometimes, initially as a source of disgrace. Walkers were frequently used outdoors,
sometimes also indoors and provided stability, an opportunity to sit down and rest during activities, and the means of transporting objects. Activities such as doing the laundry, shopping, exercising, and making social contact were facilitated, illustrated here by one participant’s experience of meeting a friend during a walk with her walker: “Yes, then I sit down. There might be another old lady and she has her walker too, so we both sit down, try not to get in the way, and talk. Then you can manage.” But the use of assistive devices could initially be difficult to accept. One woman said:” In the beginning I thought it was shameful” [but later] “I am so glad about the walker, [so] that I can go shopping” Participants described how assistive devices gave them a sense of security as their condition from one day to the next was unpredictable: “You never know what things will be like tomorrow . . . that’s why I want it” [a wheelchair] “because I can’t walk very far.” An electrically operable backrest in bed helped their breathing, rest, and sleep: “It’s really good. I can just sit, when I’m so tired that I can neither keep awake or go to sleep. Then, I can at least raise the support . . . and then you can sleep for a while.” Strategies for adapting the participants’ indoor and outdoor environments were described, often used in combination with assistive devices. Housing adaptation allowances were used often for avoiding stairs, e. g. for adapting the entrances and to enable the participants to do their laundry on the ground floor. Some participants planned to move to an apartment with a lift, while for others a balcony offered a sufficient opportunity to get fresh air, despite the trouble of being carried up the stairs. Generally, participants described the simultaneous use of a variety of strategies in order to carry out their activities. Taking a shower, for example, was facilitated by adapting the environment in the bathroom, using assistive devices, adapting the activity to today’s ability, and organizing the activity in a new way. Discussion The results show that the elderly with CHF strive to balance effort and redefine their active life by realizing their decreasing ability, changing their habits and roles, focusing on meaningful activities, and adjusting activities to their day-to-day ability through compensation and planning. They described their reduced occupational performance as being caused by a diversity of physical, emotional, social, and environmental aspects. Symptoms of breathlessness and fatigue (1,6,15), difficulties in slowing the pace during activities (16), fear of strenuous activities and avoiding them (10,15), isolation (6,15), and environmental barriers (7,16) are in agreement with present
ADL strategies for the elderly with CHF experiences of living with CHF. Comorbidities and other infirmities of old age, known to be common among elderly persons with CHF (5), also affect the participants’ occupational performance. For some participants the impact of symptoms from CHF was clearly defined in relation to other comorbidities, for others it seemed to be a mixed daily life experience of having an impaired body. This is in line with Summer Meranius (17), who found that old people living with comorbidity experienced themselves as just “sick”, regardless of the number of diseases, and that maintaining their habits and social relationships encouraged their health and well-being. This highlights the complexity of rehabilitation for old clients with comorbidities including CHF and the importance of a client-centred approach. The results also show that the participants strive to preserve an active life through using conflicting emotional and physical strategies. On the one hand, they are willing to adopt a positive attitude and described that they accepted changes, which accords with the results of previous studies (7,10). In this study, on the other hand, struggling against changes could apparently provide motivation. It is important to take these different strategies into consideration when formulating occupational goals with the client. Participants perform activities they think might improve their physical ability, mostly walking, as they are aware of the importance of physical training. In line with our results, Pihl et al. (10) describes how difficulties in handling anxiety during activities led to underperformance. This highlights the importance of healthcare professionals promoting the clients’ courage to exert themselves in physical activities and reinforce their sense of safety, minimizing self-chosen restrictions in their occupational repertoire. In the present study there was an ongoing process among the participants of adapting occupational performance, changing and restoring habits and roles, and altering their view of themselves. For some, their identity was shaken when their performance was no longer consistent with their own and others’ expectations and they described how they lost their roles and were forced to change. Other participants, however, maintained their roles by, for example doing activities in collaboration with others. This is in line with Kielhofner (18) who describes role change as a complex individual process changing our identity, our relationship to others, the tasks we are expected to perform, and how our lifestyle is organized. Similar results are shown in reviews (6,19), which describe how CHF patients take on a new identity, which not all achieve, and point out that many patients lack the information they need to make their situation comprehensible. In our study the importance of explanatory information about the illness can be illustrated by the participant
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who found a “new philosophy of life” after receiving information from a physician, which resulted in a change in occupational choices, habits, and roles. This can be an indication of the need for information with a holistic perspective, including client-centred occupational therapy interventions. In this study a variety of strategies were used simultaneously to perform activities through planning and balancing the degree of effort. In line with other studies (5,19), participants described random periods of stability and decline of variable lengths. In this study occupational performance is also highlighted as changing on a day-to-day basis. This constitutes demanding change, as habits cannot automatically regulate daily routines but must be continuously replaced with conscious strategies based on the current occupational capacity (18). Strategies, with reference to people with CHF, such as resting (9-11), reducing levels of activity (9-11), planning (10), and using assistive devices (4,9), are mentioned in earlier studies. In this study resting is used both as a spontaneous response to fatigue and breathlessness and as a planned strategy, breaking up activities or planning events during the day. Resting, according to Lundman et al. (9) can be perceived as dangerous, causing medical complications and dependence. In this study, the disadvantage of resting was mostly connected to its taking up time and blocking the time available for other activities. The results show that the participants develop strategies to reduce the gap between decreasing capacity and the demands of the physical environmental by using common everyday technology and environmentaladaptations of their homes and surroundings. Occupational therapists can facilitate this by providing information and promoting the client’s own ability to adapt. The participants described how physical fatigue and breathlessness affected their ability to get themselves outdoors and to travel. Isolation is a widely recorded experience among those with CHF (6,10,15) and described by Falk et al. (11) as the most important consequence of fatigue. In this study, cars and mobility devices were important for independence and facilitated social activities. But mobility devices, walkers in particular, can be hard to accept and may be interpreted as a symbol of disability. However, the walker was accepted over time and was transformed from a support only just for walking into an enabler of such daily activities as shopping and physical training. Löfqvist et al. (20) made similar findings in a case study based on old women’s experiences of mobility devices in everyday occupation. The use of the telephone and internet-based communications for social contact are other strategies in this study employed to overcome the difficulty of travelling to relatives and friends. Internet use for social activities is something to take into consideration and to base
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future interventions on as older people’s participation in social networking websitesseems to have the potential to reduce loneliness (21). The results show that the participants became motivated to manage daily activities by finding meaningful activities for themselves, e.g. activities that enable independence, social activities, and activities to support others. For some, both occupational repertoire and pattern of daily occupation changed when the focus was totally on managing personal care. This raises questions about participants’ occupational balance, defined by Wagman et al. (22) as the individual’s perception of having the right amount of occupation and the right variation between occupations. For these participants the time and energy spent in occupational areas such as self-care, productive activities, and rest increases and the remaining time for variation involving leisure and social activities declines. Despite this fact, participants adapt and include what are for them new meaningful leisure activities in their resting time, a process that should be promoted by occupational therapy interventions. In this context, Falk’s et al. (11) inspiring results are important, that engagement in activities with no specific purpose or which required no conscious effort, such as experiencing natural scenery, or being involved in mental and social activities, reduces CHF patients’ experience of fatigue. In this study, the participants described the extensive impact on occupational performance of CHF and comorbidities, generating a need to be as adaptable as possible in daily life. The theory of occupational adaptation (23) provides a theoretical model for better understanding the occupational adaptation process as a highly interactive, complex, and self-organizing process, the goal of which is to achieve control over the environment. Schultz (23) describes the interaction of the person, the environment, and the person’s internal adaptive processes and occupation as a tool for occupational therapists to use to facilitate the client’s ability to adapt. The intervention should primarily help the client’s occupational readiness by teaching adaptive methods and compensation by adjusting the environment and using assistive devices. It should then progress to meaningful occupation, to encourage the client to find his/her own abilities to adapt. Many of the strategies used in this study to change occupational performance can be described as energy conservation management (ECM) such as resting, pacing, breaking an activity down into parts, setting priorities, planning activities, organizing the work space, using technology and assistive devices, and adapting the environment. Energy conservation is, according to Carson et al. (24) a way of maximizing the person’s activity level, enabling participation in meaningful activities and minimizing weakness and
fatigue by using strategies to achieve a balance between work and rest (24). Such occupational therapy intervention has been described from a general perspective regardless of disease state in books and scientific papers (24,25). Furthermore, specialized ECM interventions in connection with multiple sclerosis are known to reduce the impact of fatigue and improve the quality of life and physical, social, and mental health in the short term (26). As far as we know, no study concerning ECM interventions for persons with CHF has been published. Finally, the results show that strategies found to reduce fatigue and shortness of breath often converge, which is why we recommend occupational therapy interventions with ECM to reduce these symptoms during activity. In this discussion, it is also important to remember evidence of the beneficial effects of physical training for those with CHF, to improve exercise tolerance and health-related quality of life (5). According to this the benefit of physical activity and exercise should be included in ECM. Interventions for CHF management in home care are described in a literature review of research (27). It was found that most studies reported multidisciplinary interventions including nurses, physicians, and other professionals, e.g. dietitian, physical therapists, social workers, and psychologists. OTs were, as far as we know, mentioned in the 70 articles. This highlights the need for research to describe the options of OT interventions to enable clients to handle what, for them, are meaningful activities. A programme for occupational therapy based on current evidence, including specialized ECM concerning persons with CHF, could be valuable for the future development of occupational therapy interventions and be a component in a multidisciplinary intervention. Methodological consideration While the findings are based on a small sample, it is important for credibility to note the ease and depth with which the participants described their experiences, which affected the amount of data. There were few verbal interruptions in the interviews and the narrations seemed spontaneous, fluent, and given with commitment. No relevant data have been inadvertently excluded or irrelevant data included. In order to increase the rigour and trustworthiness the results were continuously discussed by the authors, and the themes and sub-themes were constantly revised in order to clarify their content until consensus was achieved (14). With regard to transferability, our study reflects the experiences of only a small group of male participants (NYHA II) compared to a group of women (NYHA II-IV). Further research into gender aspects of this
ADL strategies for the elderly with CHF topic is necessary. Furthermore, it will be important to gain increased knowledge regarding strategies for handling daily activities among middle-aged and younger people with heart failure. Conclusion Elderly people with CHF are struggling with an ongoing process of occupational adaptation. Their failing health includes periodical physical decline and fluctuating day-to-day ability. Furthermore, the importance of performing meaningful activities, maintaining an occupational repertoire and a desirable occupational balance, and the ability to fulfil roles indicates a need for information about strategies from a holistic perspective and client-centred occupational therapy interventions.
Acknowledgements The authors would like to thank the participants in the study. This work was supported by funding from the National Research School in General Practice (VRfunded), Swedish Heart and Lung Association (local and national), the Foundation for Medical Research in Skellefteå, the Swedish Association of Occupational Therapists, Inga-Britt and Jan-Axel Bränholm Foundation, Detlof stiftelse, Department of Community Medicine and Rehabilitation Umeå University, and Research Grants for Västerbotten County Council (FoU and ALF). Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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7. Falk S, Wahn A-K, Lidell E. Keeping the maintenance of daily life in spite of chronic heart failure: a qualitative study. Eur J Cardiovasc Nurs 2007;3:192–9. 8. Sundin K, Bruce E, Barremo A-S. Elderly women’s experiences of support when living with congestive heart failure. Int J Qual Stud Health Well-being 2010;5:1–10; doi:10.3402/qhw. v5i2.5064. 9. Lundman B, Brännström M, Hägglund L, Strandberg G. Fatigue in elderly with chronic heart failure: an underrecognized symptom. Ageing Health 2009;5:619–24. 10. Pihl E, Fridlund B, Mårtensson J. Patients’ experiences of physical limitations in daily life activities when suffering from chronic heart failure: a phenomenographic analysis. Scand J Caring Sci 2011;25:3–11. 11. Falk K, Granger BB, Swedberg K. Breaking the vicious circle of fatigue in patients with chronic heart failure. Qual Health Res 2007;8:1020–7. 12. Olofsson M, Edebro D, Boman K. Are elderly patients with suspected HF misdiagnosed? A primary health care center study. Cardiology 2007;107:226–32. 13. The Criteria Committee of the New York Heart Association Nomenclature and criteria for diagnosis of diseases of the heart and great vessels. 9th edition. Boston: Little, Brown; 1994. 14. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004;24:105–12. 15. Jeon Y-H, Kraus SG, Jowsey T, Glasgow NJ. The experience of living with chronic heart failure: a narrative review of qualitative studies. BMC Health Serv Res 2010;10:77. Available from http://www.biomedcentral.com/1472-6963/10/77. 16. Pattenden JF, Roberts H, Lewin RJP. Living with heart failure: patient and carer perspectives. Eur J Cardiovasc Nurs 2007;6: 273–9. 17. Summer Meranius M. Era delar är min helhet. En studie om att vara äldre och multisjuk [You see parts but I am whole. A study of older persons’ experience of multimorbidity]. Göteborg: Linnaeus University Press; 2010. 18. Kielhofner G. Model of human occupation: theory and application. 4th ed. Baltimore: Lippincott Williams & Wilkins; 2008. 19. Welstand J, Carson A, Rutherford P. Living with heart failure: an integrative review. Int J Nurs Stud 2009;46:1374–85. 20. Löfqvist C, Nygren C, Brandt Å, Iwarsson S. Very old Swedish women’s experiences of mobility devices in everyday occupation: a longitudinal case study. Scand J Occup Ther 2009;16:181–92. 21. Ballantyne A, Trenwith L, Zubrinich S, Corlis M. “I feel less lonely”: what older people say about participating in a social networking website. Qual Ageing Old Adult 2010;3:25–35. 22. Wagman P, Håkansson C, Björklund A. Occupational balance as used in occupational therapy: a concept analysis. Scand J Occup Ther 2012;4:322–7. 23. Schultz S. Theory of occupational adaptation. In Crepeau EB, Cohn ES, Boyt Schell BA, editors. Willard & Spackman’s occupational therapy. 11th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2009. p 462–75. 24. Carson D, Gaya A, Milantoni C. Energy conservation: achieving a balance of work, rest and play. Toronto: COTA; 2002. 25. Dreiling D. Energy conservation. Home Health Manage Practice 2009;1:26–33. 26. Blikman LJ, Huisstede BM, Kooijmans H, Stam HJ, Bussmann JB, van Meeteren J. Effectiveness of energy conservation treatment in reducing fatigue in multiple sclerosis: a systematic review and meta-analysis. Arch Phys Med Rehabil 2013;94:1360–76. 27. Jaarsma T, Brons M, Kraai I, Luttik ML, Strömberg A. Components of heart failure management in home care: a literature review. Eur J Cardiovasc Nurs 2012;12:230–41.
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ORIGINAL ARTICLE
Occupational performance and strategies for managing daily life among the elderly with heart failure
EVA-BRITT NORBERG1, KURT BOMAN2, BRITTA LÖFGREN1 & MARGARETA BRÄNNSTRÖM3 1
Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå, Sweden, Research Unit, Medicine Skellefteå, Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden, and 3Department of Nursing, Umeå University, Umeå, Sweden
2
Abstract Aim: The aim of this study was to describe experiences of limitations in occupational performance and strategies for managing daily activities among the elderly with chronic heart failure (CHF). Methods: Ten participants from primary healthcare with a confirmed diagnosis of CHF were interviewed. The interviews were analysed using qualitative content analysis. Results: The first theme, “Redefining an active life, aware of one’s impaired body”, was based on four sub-themes: realizing one’s limited activity ability; striving to preserve an active life; focusing on meaningful activities; and changing vs. not changing habits and roles. The second theme, “Planning activities and balancing the degree of effort”, was based on three sub-themes: limiting, organizing, and rationalizing activities; adjusting activities to today’s ability; and using technology and adapting the environment. Conclusions: Elderly people with CHF are struggling with an ongoing process of occupational adaptation due to periodical physical decline and fluctuating day-to-day ability. This highlights a need for information on strategies from a holistic perspective and client-centred occupational therapy interventions.
Key words: qualitative design, occupational therapy, occupational balance, occupational adaptation, ageing, activities of daily living
Chronic heart failure (CHF) has a substantial impact on activities of daily living, leading to dependency in carrying out activities important to independent living (1-4). Symptoms such as breathlessness and fatigue are characteristic (5). In the elderly with CHF, physical rather than mental fatigue seems to have negative impact on activities of daily living (4), but comorbidities and normal ageing must also be considered (5). Old people’s experiences of living with CHF are characterized by distressing symptoms, compromising physical functioning, feelings of powerlessness and hopelessness, and social and role dysfunction (6). Despite this gloomy perspective elderly people with CHF seem to carry out activities in spite of
perceived strain (3) and demonstrate a strong desire to live as normally and independently as possible (7,8). Previous studies describe people’s experiences of living and coping with CHF in a comprehensive way (6,9,10), some mention more specific strategies of handling daily activities, e.g. taking a rest, slowing down, planning (9-11) support from their family (6), and use of assistive devices (4,9). However, these studies are not sufficiently detailed for the purpose of deepening the knowledge about occupational therapy interventions. Thus, in order to improve their rehabilitation, there is a need for a deeper understanding of their occupational performance. The aim of this study was to describe experiences of limitations
Correspondence: Eva-Britt Norberg, Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, 901 87 Umeå, Sweden. Tel: +4670-2918321. E-mail: [email protected] (Received 29 October 2013; accepted 1 April 2014) ISSN 1103-8128 print/ISSN 1651-2014 online 2014 Informa Healthcare DOI: 10.3109/11038128.2014.911955
ADL strategies for the elderly with CHF Table I. Participants’ characteristics, n = 10. Women
Men
Total
n
n
n
Gender
7
3
10
Single
4
0
4
Private house
1
1
2
Apartment
6
2
8
Housing:
Used assistive device
6
0
6
Used home-help service
2
0
2
Granted allowance for home modification
4
0
4
2
3
5
Self-reported NYHA class: II III
4
0
4
IV
1
0
1
Self-reported diseases and infirmities of old age other than cardiovascular disease: Musculoskeletal disorders
6
2
8
Respiratory disorders
3
1
4
Hearing disorders
2
1
3
Orthopaedic disorders
2
0
2
Visual disorders
2
0
2
Cancer
0
2
2
Stroke
1
0
1
Dizziness
4
0
4
Notes: NYHA II – Slight limitation of physical activity: comfortable at rest, but ordinary activity results in fatigue, palpitations, or dyspnoea; NYHA III – Marked limitations of physical activity: comfortable at rest, but less than ordinary activity results in symptoms; NYHA IV – Unable to carry out any physical activity without discomfort: symptoms of heart failure are present even at rest with increased discomfort during any physical activity.
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relatives (n = 3); living in residential care home (n = 2); and four declined to participate. Ten participants, seven women and three men aged between 74 and 91 years (mean 81 years) participated in the study. Table I gives the basic characteristics of the participants. Apart from cardiovascular disease, nine of the 10 participants reported other diseases and infirmities of old age. All the participants classified their CHF symptoms in NYHA II–IV, according to the New York Heart Association classification (13). Procedure and interviews Information letters describing the content of the study and the procedure were sent to the potential participants. After one week, further oral information was given by phone and those contacted either consented or declined to participate in the study. Interviews were carried out by the first author and took place in the participants’ homes. All interviews were audiotaped and lasted between 50 and 90 minutes. The opening question was: “Please tell me how an ordinary day for you is. Please give me some examples.” After that came a further question: “Has it changed, or maybe not changed, since you got your heart condition?” Then supportive follow-up questions were asked for reasons of clarification and to continue the conversation. Requests such as: “Tell me about situations when you feel you cannot do the activities you want to do” and questions such as: “What solutions have you found?” and “What do you think?”, “What happens?”, and “How do you feel about that?” were used to elicit further information. Answers to questions concerning demographics, classifying NYHA classes (13), and the presence of comorbidity were also documented. The authors pre-understanding
in occupational performance and strategies for managing daily activities among elderly persons with chronic heart failure living at home. Material and methods Design A descriptive qualitative design was employed. Participants Of a population of 40 participants from a previous study population (3,4,12), 22 were considered for inclusion in this study, since 18 had died. Of these 22, eight were excluded for various reasons: dementia (n = 3); serious cognitive disorders communicated by
The analysis was carried out by a PhD student with clinical experience in the area, and two experts with long experience in the field of CHF clinically and scientifically, and scientific expertise. The represented professions were physician, occupational therapist, and registered nurse. Data analysis The interviews were analysed using qualitative content analysis (14). Qualitative content analysis focuses on both the subject and the context, comparing similarities and differences with regard to the phenomena studied. In this study a thematic content analysis was conducted. A theme is a thread of an underlying meaning through condensed meaning
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units, codes, or categories on an interpretive level (14). The analysis was conducted by the four authors in cooperation. First, the interviews were transcribed verbatim and the resulting text was read through several times to gain an understanding of the whole. Second, content relating to the aim and meaning units was independently identified and discussed. In the third step, these meaning units were abstracted and labelled with a code. In the fourth step, codes with a mutual meaning were grouped together and abstracted into sub-themes and themes. During the process, the four authors continuously considered and moved back and forth in relation to codes, sub-themes, and themes in order to arrive at a consensus concerning the interpretation and to increase the trustworthiness of the analysis. Approval for the project was obtained from the Regional Ethics Review Board in Umeå, Sweden (Dnr 09-137). Participants who felt they needed rehabilitation or care were recommended to contact their primary healthcare centre. Results In the thematic analysis, two themes and seven subthemes were identified (Table II). They are presented below and are illustrated with quotations from the interviews. Redefining an active life, aware of one’s impaired body Redefining an active life, aware of one’s impaired body means realizing one’s limited activity ability, striving to preserve an active life, focusing on meaningful activities, and changing vs. not changing habits and roles. Realizing one’s limited activity ability. The participants related their limited activity ability to heart failure, but also to ageing and other diseases. Physical fatigue could occur suddenly, and impaired endurance made it hard to complete the activity. “I think I must bake a sponge cake or something. But I don’t do it because I can’t finish it. Then I get very tired . . . in my back.” Furthermore mental fatigue, such as not having the energy to start an activity, was described as a problem. Breathlessness led to the avoidance of strenuous activities, e.g. going for a walk or climbing stairs, and could be aggravated by external factors such as cold or warm weather. Some participants described how in the course of time they learnt to reduce the pace in order to manage activities. Varying degrees of strenuous work with the arms could also provoke fatigue and breathlessness: “If I’m just going
to wash up a saucepan and I’m too enthusiastic, then I have to sit down.” The ability to be active seemed to change periodically and diseases and injuries such as depression, vertebral compression, other fractures and asthma at times impaired their daily activities. Experiencing dizziness and a fear of falling were described, e.g. during a visit to the grocery shop: “little children can come running and . . . I’m so afraid that then I’m going to fall. It seems awful to think. . .. Oh! Don’t come close to me. I don’t fall because I hold on to something hard but I am afraid I’ll fall and if I fall I could break my leg.” Striving to preserve an active life. The participants described sometimes contradictory strategies for preserving and finding the motivation to lead an active life. They tried to have a positive outlook on life and motivated themselves to be active: “It can be so boring . . . I can’t sleep and. . .. Then I think if I just lie here and moan by myself I will die quicker.” On the one hand, they accepted change and planned to change their lives before they were forced to do so, e.g. change their accommodation, which gave them a sense of having the situation under control. On the other hand, struggling against change motivated them to carry out activities, e.g. to continue to live in a private house despite the fact that their partner wanted to move to an apartment. Participants performed activities they thought could help them to preserve their physical and cognitive skills, e.g. going for a walk, playing bridge, or solving crosswords. Some had learned over time to handle the breathlessness, irregular heartbeat, and the sudden rising anger when they could not finish an activity by taking a break or changing the activity. Nevertheless, anxiety could still make them withdraw from an activity. Focusing on meaningful activities. Participants focused on meaningful activities, described as a diversity of activities depending on their physical ability and life situation. Independence in daily life was a goal and some exerted themselves to the full in order to manage a visit to the WC, while others described the importance of buying groceries and cooking for themselves, to work up an appetite. Contact with family and friends stood out as meaningful, and they described how they helped children, grandchildren, and friends according to their ability. It was important to have a supportive function and to be needed. One participant described her support of a disabled son: “I think it’s him I live for. . .. Because I think . . . he needs me so much. And then I can fold my hands together and say now I’m done.”
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Table II. Sub-themes and themes in the qualitative content analysis. Sub-themes
Themes
Realizing one’s limited activity ability Striving to preserve an active life Focusing on meaningful activities Changing vs. not changing habits and roles
Redefining an active life, aware of one’s impaired body
Limiting, organizing, and rationalizing activities Adjusting activities to today’s ability Using technology and adapting the environment
Planning activities and balancing the degree of effort
Changing vs. not changing habits and roles. Participants described different experiences of being or not being able to adapt their activity performance and change habits and roles. One participant said: “Yes . . . that’s almost automatic. If I can’t manage to do something I have to find another way to do it.” Another said: “But it’s most difficult if you have been quick in everything you’ve done and been well until you’re 75 and then you suddenly have to slam the brakes on, it’s very hard.” On the one hand, participants disregarded their decreasing activity ability and exerted themselves too much one day which forced them to rest the whole of the following day. For some, it was crucial to keep up appearances, e.g. the participant who drove the car 100 metres rather than risking being seen to walk slowly, but later she could adapt to her disabled husband: “Then I go at his pace, and it’s fine. He doesn’t move so quickly with a walker.” On the other hand, information given to the participants could suddenly initiate a process of change in habits and roles: “It’s called a philosophy of life. I’ve started to think a bit more about how I have lived and how, how I can live [after the doctors explained]”. Participants experienced a change in roles from independence to dependence on help from others. They used home-help services for personal care and household chores and relatives and friends were supportive when they had to perform physically demanding activities such as taking care of the car, cleaning, and shopping. Relatives sometimes doubted their ability, e.g. to drive the car, and were unable to accept that the participants could no longer be supportive of them: “I’ve said now it’s over, them coming here for their birthdays and me making cakes and everything. And then my grandchild, it’s her birthday in a fortnight, says . . . I’ll come to you on Saturday.” Participants also described how they withdrew from family gatherings and club activities when they were no longer able to perform their part in the activities, e. g. washing up dishes after dinner, weaving, or raking the allotment. Others discussed matters and found ways to facilitate their participation in collaboration with others.
A reduced capacity to perform activities also threatened their roles as a man or a woman. A man living on the third floor described how difficult it was to carry groceries up to his apartment: “But then I feel that I just want to leave the shopping on the stairs and go up empty handed, but you don’t do that . . . as a man I can’t accept that I can’t manage it . . . that would be pathetic.” Women described how lazy they felt when they rationalized cooking and household chores and their annoyance when the housework was no longer done as well as before. But new habits also made it possible for them to fulfil their housewifely role even though they could not perform all the tasks independently, e.g. sorting dirty clothes before the husband completed the washing or in exchange for help with the housekeeping inviting the daughter to dinner. A woman described how she baked a cake: “I sit and read the recipe and he [my husband] does the work. So I say, don’t beat it too hard [laughs]. How does that feel? Yes, I think it’s quite fun [laughs].” The role of family caregiver was intimately described by participants who lived or had previously lived with a disabled family member. They described stressful days when they had difficulties setting limits, often prioritized their relatives’ needs over their own, and the pain when they were no longer able to continue as a family caregiver. Planning activities and balancing the degree of effort Planning activities and balancing the degree of effort means limiting, organizing, and rationalizing activities, adjusting activities to today’s ability, using technology, and adapting the environment. Limiting, organizing, and rationalizing activities. The participants described different ways of planning their activities. They limited their level of ambition and the extent of the activity, e.g. they only baked small batches, made the bed only when they were expecting guests, and did not put the vacuum cleaner away when they were going to continue the vacuumcleaning the next day. They organized their tasks in
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new ways, regarding both time of day and adapting to the environment. Strenuous activities such as washing and shopping were done more frequently in order to reduce the effort and meetings with friends were arranged in the daytime. Other exhausting activities, such as walking and climbing stairs, were efficiently organized by coordinating shopping and by gathering items to be taken upstairs just once a day on the stairs. They also rationalized cooking, buying ready-made or semi-cooked food products, and cooked larger portions of food to last for several days: “I keep stuff in the freezer at home, so if I feel ill, you know, I always have something that I have already prepared in the freezer.” Adjusting activities to today’s ability. Participants described how fatigue and shortness of breath varied from day to day, often in an unpredictable way. Despite this, they managed their activities, listened to their body, and adapted to their current ability by adjusting their pace, changing to another less strenuous activity, or continuing on another day. Resting was described as a way of taking care of oneself, as shown in this quotation about cleaning the bedroom: “I vacuum the bed first . . . and then I rest . . . a bit and then I vacuum under the bed . . . and you have to bend down . . . and so . . . I rest at intervals during the time . . . in the end I get it done.” Rest during an activity did not necessarily imply inactivity but could also include leisure time for crosswords, books, music, and contemplation of life. Using technology and adapting the environment. Using everyday technology, assistive devices, and adapting the environment in different ways were strategies employed to reduce strain and facilitate the performance of activities more safely. These strategies reduced the strenuous use of arms and legs, as in walking long distances, lifting, and carrying, and enabled more seated activities, which also compensated for dizziness and fear of falling. Participants described the importance of everyday technology and had increased their use of mechanical equipment such as motorized lawn mowers and electric kitchen devices. Transport by car, sometimes as part of a community mobility service, was widely used for shopping, leisure, and social interaction as even walking short distances could be too strenuous and the outdoor environment could be too demanding, if the terrain was hilly, for example. The telephone and sometimes internet-based communication also provided valuable opportunities for social contact with family and friends. Assistive devices were described as facilitating activities but, sometimes, initially as a source of disgrace. Walkers were frequently used outdoors,
sometimes also indoors and provided stability, an opportunity to sit down and rest during activities, and the means of transporting objects. Activities such as doing the laundry, shopping, exercising, and making social contact were facilitated, illustrated here by one participant’s experience of meeting a friend during a walk with her walker: “Yes, then I sit down. There might be another old lady and she has her walker too, so we both sit down, try not to get in the way, and talk. Then you can manage.” But the use of assistive devices could initially be difficult to accept. One woman said:” In the beginning I thought it was shameful” [but later] “I am so glad about the walker, [so] that I can go shopping” Participants described how assistive devices gave them a sense of security as their condition from one day to the next was unpredictable: “You never know what things will be like tomorrow . . . that’s why I want it” [a wheelchair] “because I can’t walk very far.” An electrically operable backrest in bed helped their breathing, rest, and sleep: “It’s really good. I can just sit, when I’m so tired that I can neither keep awake or go to sleep. Then, I can at least raise the support . . . and then you can sleep for a while.” Strategies for adapting the participants’ indoor and outdoor environments were described, often used in combination with assistive devices. Housing adaptation allowances were used often for avoiding stairs, e. g. for adapting the entrances and to enable the participants to do their laundry on the ground floor. Some participants planned to move to an apartment with a lift, while for others a balcony offered a sufficient opportunity to get fresh air, despite the trouble of being carried up the stairs. Generally, participants described the simultaneous use of a variety of strategies in order to carry out their activities. Taking a shower, for example, was facilitated by adapting the environment in the bathroom, using assistive devices, adapting the activity to today’s ability, and organizing the activity in a new way. Discussion The results show that the elderly with CHF strive to balance effort and redefine their active life by realizing their decreasing ability, changing their habits and roles, focusing on meaningful activities, and adjusting activities to their day-to-day ability through compensation and planning. They described their reduced occupational performance as being caused by a diversity of physical, emotional, social, and environmental aspects. Symptoms of breathlessness and fatigue (1,6,15), difficulties in slowing the pace during activities (16), fear of strenuous activities and avoiding them (10,15), isolation (6,15), and environmental barriers (7,16) are in agreement with present
ADL strategies for the elderly with CHF experiences of living with CHF. Comorbidities and other infirmities of old age, known to be common among elderly persons with CHF (5), also affect the participants’ occupational performance. For some participants the impact of symptoms from CHF was clearly defined in relation to other comorbidities, for others it seemed to be a mixed daily life experience of having an impaired body. This is in line with Summer Meranius (17), who found that old people living with comorbidity experienced themselves as just “sick”, regardless of the number of diseases, and that maintaining their habits and social relationships encouraged their health and well-being. This highlights the complexity of rehabilitation for old clients with comorbidities including CHF and the importance of a client-centred approach. The results also show that the participants strive to preserve an active life through using conflicting emotional and physical strategies. On the one hand, they are willing to adopt a positive attitude and described that they accepted changes, which accords with the results of previous studies (7,10). In this study, on the other hand, struggling against changes could apparently provide motivation. It is important to take these different strategies into consideration when formulating occupational goals with the client. Participants perform activities they think might improve their physical ability, mostly walking, as they are aware of the importance of physical training. In line with our results, Pihl et al. (10) describes how difficulties in handling anxiety during activities led to underperformance. This highlights the importance of healthcare professionals promoting the clients’ courage to exert themselves in physical activities and reinforce their sense of safety, minimizing self-chosen restrictions in their occupational repertoire. In the present study there was an ongoing process among the participants of adapting occupational performance, changing and restoring habits and roles, and altering their view of themselves. For some, their identity was shaken when their performance was no longer consistent with their own and others’ expectations and they described how they lost their roles and were forced to change. Other participants, however, maintained their roles by, for example doing activities in collaboration with others. This is in line with Kielhofner (18) who describes role change as a complex individual process changing our identity, our relationship to others, the tasks we are expected to perform, and how our lifestyle is organized. Similar results are shown in reviews (6,19), which describe how CHF patients take on a new identity, which not all achieve, and point out that many patients lack the information they need to make their situation comprehensible. In our study the importance of explanatory information about the illness can be illustrated by the participant
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who found a “new philosophy of life” after receiving information from a physician, which resulted in a change in occupational choices, habits, and roles. This can be an indication of the need for information with a holistic perspective, including client-centred occupational therapy interventions. In this study a variety of strategies were used simultaneously to perform activities through planning and balancing the degree of effort. In line with other studies (5,19), participants described random periods of stability and decline of variable lengths. In this study occupational performance is also highlighted as changing on a day-to-day basis. This constitutes demanding change, as habits cannot automatically regulate daily routines but must be continuously replaced with conscious strategies based on the current occupational capacity (18). Strategies, with reference to people with CHF, such as resting (9-11), reducing levels of activity (9-11), planning (10), and using assistive devices (4,9), are mentioned in earlier studies. In this study resting is used both as a spontaneous response to fatigue and breathlessness and as a planned strategy, breaking up activities or planning events during the day. Resting, according to Lundman et al. (9) can be perceived as dangerous, causing medical complications and dependence. In this study, the disadvantage of resting was mostly connected to its taking up time and blocking the time available for other activities. The results show that the participants develop strategies to reduce the gap between decreasing capacity and the demands of the physical environmental by using common everyday technology and environmentaladaptations of their homes and surroundings. Occupational therapists can facilitate this by providing information and promoting the client’s own ability to adapt. The participants described how physical fatigue and breathlessness affected their ability to get themselves outdoors and to travel. Isolation is a widely recorded experience among those with CHF (6,10,15) and described by Falk et al. (11) as the most important consequence of fatigue. In this study, cars and mobility devices were important for independence and facilitated social activities. But mobility devices, walkers in particular, can be hard to accept and may be interpreted as a symbol of disability. However, the walker was accepted over time and was transformed from a support only just for walking into an enabler of such daily activities as shopping and physical training. Löfqvist et al. (20) made similar findings in a case study based on old women’s experiences of mobility devices in everyday occupation. The use of the telephone and internet-based communications for social contact are other strategies in this study employed to overcome the difficulty of travelling to relatives and friends. Internet use for social activities is something to take into consideration and to base
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future interventions on as older people’s participation in social networking websitesseems to have the potential to reduce loneliness (21). The results show that the participants became motivated to manage daily activities by finding meaningful activities for themselves, e.g. activities that enable independence, social activities, and activities to support others. For some, both occupational repertoire and pattern of daily occupation changed when the focus was totally on managing personal care. This raises questions about participants’ occupational balance, defined by Wagman et al. (22) as the individual’s perception of having the right amount of occupation and the right variation between occupations. For these participants the time and energy spent in occupational areas such as self-care, productive activities, and rest increases and the remaining time for variation involving leisure and social activities declines. Despite this fact, participants adapt and include what are for them new meaningful leisure activities in their resting time, a process that should be promoted by occupational therapy interventions. In this context, Falk’s et al. (11) inspiring results are important, that engagement in activities with no specific purpose or which required no conscious effort, such as experiencing natural scenery, or being involved in mental and social activities, reduces CHF patients’ experience of fatigue. In this study, the participants described the extensive impact on occupational performance of CHF and comorbidities, generating a need to be as adaptable as possible in daily life. The theory of occupational adaptation (23) provides a theoretical model for better understanding the occupational adaptation process as a highly interactive, complex, and self-organizing process, the goal of which is to achieve control over the environment. Schultz (23) describes the interaction of the person, the environment, and the person’s internal adaptive processes and occupation as a tool for occupational therapists to use to facilitate the client’s ability to adapt. The intervention should primarily help the client’s occupational readiness by teaching adaptive methods and compensation by adjusting the environment and using assistive devices. It should then progress to meaningful occupation, to encourage the client to find his/her own abilities to adapt. Many of the strategies used in this study to change occupational performance can be described as energy conservation management (ECM) such as resting, pacing, breaking an activity down into parts, setting priorities, planning activities, organizing the work space, using technology and assistive devices, and adapting the environment. Energy conservation is, according to Carson et al. (24) a way of maximizing the person’s activity level, enabling participation in meaningful activities and minimizing weakness and
fatigue by using strategies to achieve a balance between work and rest (24). Such occupational therapy intervention has been described from a general perspective regardless of disease state in books and scientific papers (24,25). Furthermore, specialized ECM interventions in connection with multiple sclerosis are known to reduce the impact of fatigue and improve the quality of life and physical, social, and mental health in the short term (26). As far as we know, no study concerning ECM interventions for persons with CHF has been published. Finally, the results show that strategies found to reduce fatigue and shortness of breath often converge, which is why we recommend occupational therapy interventions with ECM to reduce these symptoms during activity. In this discussion, it is also important to remember evidence of the beneficial effects of physical training for those with CHF, to improve exercise tolerance and health-related quality of life (5). According to this the benefit of physical activity and exercise should be included in ECM. Interventions for CHF management in home care are described in a literature review of research (27). It was found that most studies reported multidisciplinary interventions including nurses, physicians, and other professionals, e.g. dietitian, physical therapists, social workers, and psychologists. OTs were, as far as we know, mentioned in the 70 articles. This highlights the need for research to describe the options of OT interventions to enable clients to handle what, for them, are meaningful activities. A programme for occupational therapy based on current evidence, including specialized ECM concerning persons with CHF, could be valuable for the future development of occupational therapy interventions and be a component in a multidisciplinary intervention. Methodological consideration While the findings are based on a small sample, it is important for credibility to note the ease and depth with which the participants described their experiences, which affected the amount of data. There were few verbal interruptions in the interviews and the narrations seemed spontaneous, fluent, and given with commitment. No relevant data have been inadvertently excluded or irrelevant data included. In order to increase the rigour and trustworthiness the results were continuously discussed by the authors, and the themes and sub-themes were constantly revised in order to clarify their content until consensus was achieved (14). With regard to transferability, our study reflects the experiences of only a small group of male participants (NYHA II) compared to a group of women (NYHA II-IV). Further research into gender aspects of this
ADL strategies for the elderly with CHF topic is necessary. Furthermore, it will be important to gain increased knowledge regarding strategies for handling daily activities among middle-aged and younger people with heart failure. Conclusion Elderly people with CHF are struggling with an ongoing process of occupational adaptation. Their failing health includes periodical physical decline and fluctuating day-to-day ability. Furthermore, the importance of performing meaningful activities, maintaining an occupational repertoire and a desirable occupational balance, and the ability to fulfil roles indicates a need for information about strategies from a holistic perspective and client-centred occupational therapy interventions.
Acknowledgements The authors would like to thank the participants in the study. This work was supported by funding from the National Research School in General Practice (VRfunded), Swedish Heart and Lung Association (local and national), the Foundation for Medical Research in Skellefteå, the Swedish Association of Occupational Therapists, Inga-Britt and Jan-Axel Bränholm Foundation, Detlof stiftelse, Department of Community Medicine and Rehabilitation Umeå University, and Research Grants for Västerbotten County Council (FoU and ALF). Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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