Abstract
Introduction
People with advanced cancer are increasingly expected to live at home and manage the consequences of illness and treatment. The purpose of this study was to explore how people with advanced cancer manage the influence of home care and treatment on occupations and habits.
Method
Constructivist grounded theory guided the collection and analysis of data from 22 people with advanced cancer. Data were collected using in-depth interviews and participant diaries.
Findings
Uncertainty about abilities to engage in occupation and home care and treatment delivery disrupted participants’ daily life. Participants employed various strategies to manage uncertainties and to preserve a sense of agency and control.
Conclusions
This study provides insights into how people with advanced cancer manage and respond to the impact of illness, home care, and treatment in their daily life. The findings may aid occupational therapists to develop and deliver interventions that allow their patients to maintain a sense of agency in their daily life.
Introduction
Despite improved survival rates, an increasing number of people are being diagnosed with cancer (The Cancer Register, 2017). In this study we focus on people with advanced cancer, where the disease is progressive and presumed incurable (The American Cancer Society, 2020). Governments in some European countries and other western countries are shifting the provision of health care from institutional settings to the home (Boeckxstaens and De Graaf, 2011; Danish Government, 2016; Wilson et al., 2014). In adhering to the definition of palliative care by the World Health Organization (WHO) (2020), Danish national guidelines and recommendations concerning treatment and care state that people with cancer should preserve their independence and have a meaningful daily life until death (Danish Government, 2016; Danish Health Authority, 2017, 2018). These guidelines and recommendations also assert that treatment and care should be easily accessible and delivered in ways that do not intrude on the person’s private life. These recommendations (initiatives) align with the wishes of people with advanced cancer. However, in their effort to uphold daily life at home, people with advanced cancer will likely become dependent on home care and face the challenges of managing and adjusting to treatment scheduling (Devik et al., 2013; García-Rueda et al., 2016; Wilson et al., 2014).
Literature review
Studies have pointed to the benefits of retaining engagement in occupation among people with advanced cancer (Maersk et al., 2017, 2018; Rudman et al., 2008). Such benefits included preservation of roles and quality of life, strengthened self-esteem, and mitigation of the effect of the cancer diagnosis on their self-perception (Maersk et al., 2017; Morgan et al., 2017; Peoples et al., 2017). However, the loss of occupations, which may follow bodily deterioration, is demoralizing and forces people with advanced cancer to re-evaluate their self-perception to fit their abilities (García-Rueda et al., 2016; Maersk et al., 2017; Morgan et al., 2017; Svidén et al., 2010). Daily planning has to be attuned to the level of energy and available assistance from health care professionals rather than the person’s will and habitual ways of living (Ellingsen et al., 2013; Morgan et al., 2017). In line with this, having to navigate through the health care system and adapting to home care and treatment regimes requires time and effort and adds to the challenges of upholding habitual ways of living and occupational engagement (Devik et al., 2013; Haak et al., 2007). For example, variations in treatment effect can cause daily life to gradually or quickly change, and occupations may be lost (Svidén et al., 2010). The challenges of living with advanced cancer may require people to develop strategies to retain occupational engagement, like taking breaks throughout the day (Devik et al., 2013; García-Rueda et al., 2016; Peoples et al., 2017; Thomsen et al., 2010).
Research has shown that people with advanced cancer manage individual occupations. However, a more comprehensive understanding of how they manage daily life at home while adjusting to home care and treatment regimens (in hospital settings) is needed. The need for this knowledge is emphasized by studies showing that coping successfully with the consequences of cancer is pivotal to maintaining quality of life and dignity in the time remaining in one’s life (Thomsen et al., 2010). This knowledge is also vital for occupational therapists working to achieve the goals of palliative occupational therapy, to enable people with life-threatening illnesses to maintain valuable roles, quality of life, and self-determination through occupation (DMCG-PAL, 2016; Hammill et al., 2014; Mills and Payne, 2015; Sleight and Duker, 2016).
Theoretical perspective
To explore the implications that follow the challenges of managing daily life with advanced cancer, we draw on a theoretical and empirical understanding of habit. In the context of severe illness, the concept of habit, and how habits are lost, changed, and developed can provide a framework for understanding how people manage and adjust to their illness in daily life (Charmaz, 2002; Yerxa, 2002). The concept of habit refers to both modes of thinking and responding through action in daily life, which people evoke without reflection (Charmaz, 2002). Habit formation is the process by which daily occupations are performed repeatedly and context-consistent to the extent that they can be performed outside conscious awareness, thus freeing mental energy to focus attention elsewhere (Clark, 2000; Fritz and Cutchin, 2016). Habits coalesce in interdependent relationships with subjective experiences and phenomena, such as self-efficacy, control, sense of agency, and identity (Charmaz, 2002; Clark, 2000). These subjective experiences and phenomena influence how people form habits regarding how daily life is structured and how, when, where, and with whom they engage in occupation. Conversely, when people change their habits in the face of severe illness, they may feel self-efficacious and in control of their own life. When habits are lost, it can disrupt their sense of agency and identity (Charmaz, 2002; Clark, 2000). The purpose of this study was to explore how people with advanced cancer manage the influence of home care and treatment on occupations and habits.
Methodology
Constructivist grounded theory, as delineated by Charmaz (2014), was chosen due to its suitability to providing explanations of processes underlying human occupation and interaction as people respond to conditions shaping their daily life (Nayar, 2012).
Sampling
Sampling, data collection, and analysis were undertaken by the first author and went through the comprising procedures of initial sampling and theoretical sampling according to grounded theory guidelines (Charmaz, 2014). Initial sampling was broad, aimed at exploring the ways illness, treatment, and home care influence people with advanced cancer in their daily life. Inclusion criteria were 18 years of age or older, lived at home, received home care, and considered (by themselves or doctors) to have advanced cancer. Codes emerging from the analysis during initial sampling provided direction to the analysis. Theoretical sampling was carried out to support the development of these central codes. For example, during initial sampling, the analysis indicated that home care and shifting abilities to engage in occupation severely affected the participants’ daily life. To develop an understanding of the participants’ reactions to home care and fluctuations in their abilities, we purposively recruited participants (theoretical sampling) who were significantly affected by their illness and received home care daily.
Participants were recruited via nurses who worked in a center for cancer and health, local municipalities, hospital, and a hospice. The nurses provided eligible participants with verbal and written information about the study. If participants agreed, they were contacted by the first author and enrolled in the study. In all, 22 participants with advanced cancer enrolled in the study. Table 1 presents an overview of the participants.
Overview of participants.
aThe number indicates how many participants received this service in the home. Support and treatment in the home varied among the participants from once a week to several times a day.
bThe number indicates how many participants received this type of treatment outside the home. Treatment outside the home varied from several times a week to once a month.
The participant group and the study context
The treatment the participants received in hospitals, like chemo and radiation therapy, was prescribed by a medical doctor. Home care was provided by outgoing hospice teams and community-based healthcare centers to enable independent living at home, based on an assessment of an individual need (Ministry of Health, 2017). Care needs and practical support in the home, such as personal hygiene and cleaning, were provided by nursing assistants. Nurses met medical care needs in the home, such as changing bandages for ulcers caused by radiation therapy.
In the Danish health care system, occupational therapy services targeting people with advanced cancer are mainly provided in hospitals and community-based healthcare centers.
In-depth interviews
Data were collected over a two-year period. In-depth interviews were chosen as the primary method of data collection to allow the participants to express their experiences in their own words (Bryman, 2016; Padgett, 2008). For the first five interviews, the interview questions were designed for a broad exploration of participants’ experiences related to their illness, home care, and treatment. The theoretical orientation of habit shaped the development of questions to ensure their relevance to the aim of the study. Our understanding of habit as modes of thinking and responding through action informed questions such as “Have you made changes to your daily life because of your illness, home care, or treatment?” As the analysis progressed, the questions were revised to gain deeper understandings of how the participants managed the challenges they faced in daily life regarding occupational engagement, home care, and treatment.
In four interviews, the participant’s spouse requested to participate, primarily to provide emotional support to the participant with advanced cancer. Although participants with advanced cancer were the primary focus of the interviews, the spouses were encouraged to have input into their responses to questions concerning the challenges they faced in daily life.
Participants were asked to participate in a follow-up interview if the initial interview touched upon topics that needed further exploration or if the interview had to be terminated prematurely due to fatigue. In total, 28 interviews were conducted with the 22 participants, of which six were follow-up interviews with four participants. The interviews were conducted in participants’ homes and lasted between 35 minutes and 2.5 hours. The interviews were recorded and transcribed verbatim. The transcripts were read thoroughly, and corrections were made if dissimilarities between the recordings and the transcripts were discovered.
Participant diaries
Using participant diaries has been acknowledged as a research method suitable for exploring how experiences related to daily life and illness intersect over time (Bolger et al., 2003; Elliott, 1997). To gain insights into details of participants’ daily life, which they might have forgotten at the time of the interviews or deemed irrelevant, they were encouraged to write diaries. The diary was inspired by the diary-interview method and the time-geographic method (Ellegård and Nordell, 1997; Zimmerman and Wieder, 1977). The diary contained one main question: “Please describe one or several situations from your daily life that were affected by your illness, home care, or treatment.” Four sub-questions helped the participant in their writing: “Describe the situation,” “Where did the situation take place?” “Who was with you?” and “How did the situation affect you?” The participants were offered three different diary formats: a digital recorder, a notebook, and an electronic document (Word). They could write the diary as often and for as long as they wanted to. The diaries were collected when participants had written what they wanted to share or were no longer motivated to continue writing. In cases of follow-up interviews, the diaries were collected before the follow-up interview to generate interview questions to support the evolving analysis. In total, four participants, who also participated in interviews, wrote or recorded diaries for a total of 1076 entries, distributed over 906 days, amounting to 319 written pages. Digital diaries were transcribed verbatim.
Analysis
Initial coding
The diaries and the transcripts from the interviews were equal in content since both data sets contained descriptive and self-reflective accounts. Therefore, both data sets were merged and analyzed together. Analysis began after data had been collected from the first five participants. The transcripts were read through line-by-line. Sentences or paragraphs were coded using the participants’ own words, for example, “Planning the day” (Charmaz, 2014).
Focused coding
The codes were scrutinized in order to provide indications of the challenges the participants faced in their daily life and their responses to these challenges. To get a more comprehensive understanding, we needed to determine how and why the participants reacted in certain situations, such as motives for rejecting or not rejecting home care. Answers to these questions were sought in the data already collected or in subsequent interviews (Charmaz, 2014). The codes were continuously compared to determine if they were connected or revolved around related topics. If connections between codes seemed plausible, they were considered as categories. Collection and analysis of data ended when categories seemed developed. Across the categories, uncertainty was identified as a core category/process. Uncertainty was a condition causing and amplifying many of the challenges the participants faced in their daily life regarding occupational engagement and home care and treatment provision.
Memo-writing ran parallel to the coding process (Charmaz, 2014). This meant composing the content of codes and categories into narrative accounts describing how the participants’ daily life unfolded as a consequence of, and response to, the challenges they faced. The memos were constantly compared to the data and rewritten to ensure their credibility (Charmaz, 2014; Charmaz and Belgrave, 2012). The writing helped to determine:
The contextuality of uncertainty and how it prompted or restricted the participants’ daily life regarding possibilities for occupation; The subjective consequence of uncertainty; The strategies the participants employed to counteract the changes to their daily life caused by uncertainty.
Throughout the analysis, the three authors checked each other’s interpretations.
Ethics
In Denmark, where this study was conducted, only research that entails biological material or testing of pharmacological and hospital equipment on human subjects need permission from regional or national ethics committees (The National Committee on Health Research Ethics, 2019). Ethical approval was therefore not required for the inclusion of participants. The study was registered and approved by the Danish Data Protection Agency (J.nr. 2013-41-1740) and conformed with national guidelines for ethical conduct in research. Written consent was obtained from participants with advanced cancer and participating spouses, and they were told that they could withdraw from the study at any time. Names have been replaced by pseudonyms to anonymize the data.
Findings
“Managing uncertainty: Anticipating and planning” emerged as the core category. The category expounds uncertainty as a critical condition that shaped the participants’ daily lives, causing them to lose or form new habits. Uncertainty led the participants to develop strategies to manage the uncertainties in their daily lives and to have time for occupations important to them.
Uncertainty, and how the participants responded through the strategies of anticipating and planning, was related in particular to how their shifting abilities, home care, and treatment delivery influenced habits and occupation. This is described in the two sub-categories “Managing uncertainty about shifting abilities” and “Managing uncertainty about home care and treatment delivery.”
Managing uncertainty: anticipating and planning
With the impact of cancer on the body and subsequently having to adapt to home care and treatment regimes, uncertainty had become a condition of daily life that disrupted habitualized ways of living. Jane said: My [planning] horizon is very, very short. I never plan for more than a week because of my situation. It is so unpredictable. Even though my condition is good for the time being, it does not change my [planning] horizon. It makes it incredibly hard for me to plan anything. Different conditions affect my daily life and create a “new normal.”
Managing uncertainty about shifting abilities
Participants described how their body underwent visible and tangible changes, such as loss of body weight and hair, or as lumps began to grow underneath the skin, making it appear deformed. However, cancer not only affected how the participants perceived their body, but the body had also become unreliable and no longer complied with their will and wishes. Jane provided a good example when she said, “I cannot trust my body. The only thing that is for certain is that it is going to get worse. My body is unpredictable.”
From how Jane described her body in her diary, it seemed that it had become an antagonistic part of herself, an entity with its own will, which could oppose her intents. Uncertainty was a condition that underpinned the performance of many of the participants’ daily occupations. Uncertainty meant not knowing how much they could do before they would get fatigued or be in pain. Uncertainty forced the participants to restrict their activity space to the home and areas in the vicinity. They did their grocery shopping in nearby shops to be close to home if they suddenly needed to rest. The participants declined invitations to social events to avoid having to leave early if they became fatigued. In her diary, Gayle shared how she felt confused by the uncertainty about her abilities: I succeeded in eating my dinner, half of what I usually eat. Then I watched TV, went to bed, and I did not wake up before nine o’clock this morning [later than she used to]. I am perplexed about what I can do. What can my body endure?
The participants monitored themselves throughout the day and adjusted their strategies accordingly. Anticipating and planning emerged as a primary strategy, which the participants developed to manage uncertainty and to find a middle ground between their will and wishes and their abilities. By anticipating and planning, the participants could prioritize their time and energy and structure the upcoming days and weeks, making time for respite and occupations that were meaningful to them. By anticipating how their body might react to the amount of energy and effort an occupation demanded of them, they could plan occupations they could complete. Mary said, “I prefer to make appointments with friends in the morning because that is the best time of day.”
To some, this implied making time for naps before or after engaging in an occupation. Judy described how she took small naps during the day: I was active before you [interviewer] came. Therefore, I thought, “I better rest a bit before the interview.” I had guests on my birthday, but I had to lie down while my guests were here. I must listen to my body. I do not feel well during chemo. I am tired and sluggish. So I make sure to have small projects I can do. During my last treatment, I sorted and organized old pictures in albums. There are advantages to being sick. Because when you are sick, you are not obliged to be something for other people.
Managing uncertainty about home care and treatment delivery
Attending treatment appointments outside the home, like check-up appointments or chemotherapy, disrupted participants’ daily life and was immensely time-consuming and underpinned by uncertainty. Uncertainty was related to whether consultations would begin at the appointed time, poor directions and accessibility in buildings, and the amount of exhaustion and pain a hospital visit would entail. Maria, with advanced cancer, and her husband Ken described one among several unfortunate experiences that illustrated the uncertainties that followed being an outpatient: Ken: The nurse [at the hospital] said: “I want to speak with you about a pump which Maria has to use [part of her treatment]. I will call you with instructions.” They have not called back or visited us. Things like that are very frustrating. I would not be surprised if they visit us when I am out shopping or Maria is sleeping. Maria: There is never transparent scheduling. I do not know what to do; we have tried everything. Ken: They cannot keep their appointments. We cannot plan anything.
Participants spoke and wrote appreciatively of the home care provided by nurses and nursing assistants. For some of those living alone, home care was experienced as indispensable emotional support and provided a much-needed input from the outside world. To participants whose daily structure revolved around the scheduling of home care services, being a home care receiver encompassed more than being relieved of the practical and emotional burdens of daily life. Home care delivery did not cause the same level of uncertainty as hospital treatment delivery because of the often fixed scheduling of the home care team. However, the inflexibility of the home care teams was a condition that the participants also had to manage. With a marked sense of frustration, Robert described how occupations that he habitually engaged in were impeded by the home care he received three times a day: Then we eat dinner and watch the news. If we tune in to a movie we like, we usually watch it. I often get to finish it, but sometimes two women [nursing assistants] show up at 22.30, pull me to bed, and say “goodnight.” Then I have to lie in my bed and imagine the ending of the movie.
Again, participants responded to the uncertainties of home care and treatment delivery by anticipating and planning. Anticipating and planning helped the participants prepare for each treatment appointment and plan for the upcoming days and weeks. They attempted to take into account the variations and, in some cases, unpredictable scheduling of the home care team and plan accordingly to make time for the things important to them. Some participants had paper calendars, hanging on the wall in visible places as a visual tool for supporting their memory, which they consulted several times a day. Anticipating and planning entailed predicting problems, such as care transportation services being late and heavy traffic. Others had a more fatalistic approach of giving in to uncertainty and accepting not being in control of their day. Ken, who was married to Maria, commented: “We do not care anymore. You might as well not care, because you cannot do anything about it.” Acceptance was a strategy that helped Ken and Maria manage the uncertainties of home care provision. However, it did not relieve them of the feelings of frustration caused by the loss of self-determination of their daily life.
Although anticipating and planning helped the participants to manage the practicalities of daily life, being at the forefront of events was straining both mentally and physically. Though the participants were successful with their strategies, the effect of cancer on the body and the challenges of managing home care and treatment ultimately caused them to lose occupations and their relational ties to wither. Loss of occupation and relational ties was associated with regret and decreased life quality.
Discussion
The purpose of this study was to explore how people with advanced cancer manage the influence of home care and treatment on occupations and habits. The analysis revealed that the impact of cancer on the participants’ abilities to engage in occupation and delivery of home care and treatment caused them to lose or change their habits related to how they structured their daily life. Uncertainty arose as habitualized and familiar ways of living deteriorated. Uncertainty compelled the participants to develop and use strategies to make time for occupations that were important to them.
Uncertainty is a phenomenon that has received considerable attention within cancer research and has been associated with negative psychosocial outcomes, such as anxiety and reduced quality of life (Kurita et al., 2013; Suzuki, 2012). Studies of people with cancer have reported experiences of uncertainty related to illness recurrence, lack of information, and choice of proper treatment (Etkind et al., 2017; Shaha et al., 2008). The results from this study indicate that uncertainty extends beyond treatment-related issues and may include other aspects of daily life, such as occupational engagement.
The findings from this study align with other studies that show that people with chronic and life-threatening illnesses developed and used strategies to maintain occupational engagement and daily habits (García-Rueda et al., 2016; Kallhed and Mårtensson, 2018; Morgan et al., 2017; Peoples et al., 2017; Sperens et al., 2018). For example, similar to the findings in this study, Kallhed and Mårtensson (2018) found that planning is one of the main strategies people with chronic pain employ to save energy and give priority to occupations that are meaningful to them. Peoples et al. (2017) discovered that strategies to manage daily life can be counterproductive. For instance, online shopping, although time conserving, can lead to social isolation. In this study, we also found these strategies can have unintended negative consequences since employing them can in itself be straining and demanding. Moreover, this study shows that uncertainty can be a reason why people develop and use strategies in their daily life.
From a Deweyan perspective, uncertainty in daily life offers possibilities for personal growth (Aldrich and Cutchin, 2013). As habitual ways of thinking and acting become inadequate for handling the challenges of daily life, uncertainty may arise that stimulates people to seek possible solutions. In this study, Florence’s uncertainty about her abilities to maintain habitualized ways of being with her loved ones encouraged her to develop strategies to find other ways of socializing. In the process, she redefined her sense of obligation to other people and her self-perceptions. Accordingly, letting go of habitualized daily life and perceptions of self may be a requisite for a successful adaptation to a daily life influenced by illness and treatment, and it may provide opportunities for discovering new modes of engaging in occupation and being with other people. Some participants in this study gained a sense of agency and control by being at the forefront of events and taking charge of their situation. This is in line with the extensive research of Charmaz (1991, 2002) on people with chronic illness. Charmaz (2002) asserted that in the context of chronic illness, developing new habits and ways of upholding daily life provides a sense of control and a positive sense of self. Accordingly, it seems plausible to suggest that the strategies people with advanced cancer use to maintain occupational engagement have purposes that extended beyond managing the challenges and practicalities of daily life. These strategies can be regarded as attempts to preserve or regain a sense of self-continuity in the face of adversity and diminish the loss of identity that follows the deterioration of a familiar daily life.
The findings from this study point to a tension between the participants’ experiences of home care and treatment delivery and the recommendations by the Danish Health Authority (2017, 2018). These recommendations stress that home care and treatment should be provided in respect of the person’s daily life situation and family life. Home care and treatment provision made it difficult for participants to maintain and develop new habits and thereby free time and energy for things that were not associated with care and treatment. These findings are consistent with other studies that have pointed to similar perceptions of health care provision among people with life-threatening illnesses. Etkind et al. (2017) found that people with advanced illnesses rejected life-prolonging treatment, which they felt reduced their life quality, to have more time with their loved ones. In line with this, a study by la Cour et al. (2009) shows that people with advanced cancer may refuse treatment if it does not fit how they prefer to structure their daily life. Lastly, Devik et al. (2013) found that among old people with incurable cancer living on their own, considerable time was spent navigating the health care system and scheduling treatment and transportation. Accordingly, to receive and benefit from home care and treatment, people with advanced cancer are obliged to adapt their limited time and energy to the practices of the health care system. The recommendations by the Danish Health Authority (2017, 2018) are indeed strong advocates for the best possible care and treatment of people with cancer. However, they seem to be animated by the notion that home care and treatment are necessary intrusions. Most likely, people with advanced cancer have a different opinion. To them, the decision of whether to accept or refuse home care and treatment becomes not only a question of whether these services are needed; it also becomes a question of prioritizing the time remaining, having time for meaningful occupation, and being with their loved ones.
Strengths and limitations
The recruitment of participants proved more difficult than anticipated. When contact was established with an eligible participant, the visit had to be conducted shortly thereafter since the participant’s health condition could deteriorate rapidly. On several occasions, participants passed away before the first visit could take place. Working within these short time frames meant that, in some cases, little time was available between interviews to analyze the collected data and develop analytical ideas to inform further data collection. It is possible that some codes could have been further developed and reached a deeper analytical depth. However, Charmaz (2014) emphasizes that her approach to grounded theory should be regarded as a heuristic device that is flexible and adaptable to the problem at hand rather than a formulaic prescription. The goal is not necessarily theory development but the development of analytical categories that uncover and explain taken-for-granted assumptions about daily life, which is what we have attempted to do.
The combination of interviews and participant diaries provided a rich data set despite the challenges we faced with the recruitment of participants. The diaries gave insights into details of events and associated thoughts and feelings, which often did not emerge during the interviews. These insights served as a reflexive backdrop for formulating questions for the follow-up interview. Rigor and trustworthiness of the study findings were strengthened through frequent discussions in the author group. These discussions supported the first author’s decision-making during critical stages in the collection and analysis of data, and in particular helped to preserve analytical sensitivity to avoid empirically unsubstantiated conclusions.
Implications for occupational therapy
The findings from this study carry implications for occupational therapy:
The findings from this study indicate that people with advanced cancer may need support to deal with uncertainties, retain habits, and create a balance between treatment appointments, home care, respite, and time for occupations that are important to them. Accordingly, people with advanced cancer might benefit from learning self-management techniques, planning and prioritizing their time, and developing techniques to compensate for their loss of strength and stamina. Occupational therapists have knowledge of the positive meanings and benefits occupation can have for people at the end of life. Accordingly, they are in a unique position to advocate approaches to home care and treatment that are individualized and tailored to the occupational needs of people with advanced cancer. Approaches that do not evoke uncertainty and allow them to retain a sense of control and agency, as well as valued and habitualized ways of living and engaging in occupation for as long as possible, are recommended.
Conclusion
This study provides insights into how people with advanced cancer manage and respond to the challenges that illness, home care, and treatment pose in their daily life and how these conditions affect daily occupations and habits. The findings from this study indicate that uncertainty related to shifting abilities, home care, and treatment are key issues that people with advanced cancer struggle to reduce as they seek to maintain control and a sense of agency. The findings from this study emphasize that enabling people with advanced cancer to form or retain occupation and habits should be a concern in the development and delivery of occupational therapy interventions.
Key findings
Uncertainty related to treatment, home care delivery, and shifting abilities disrupted the ways the participants habitually structured their daily life and engaged in occupation. Anticipating and planning were the key strategies the participants employed to respond to uncertainty and preserve a sense of agency and control of their daily life.
What the study has added
This study augments the growing body of occupational therapy research that shows upholding daily life and occupational engagement is essential but challenging to people with advanced cancer moving toward the end of life. Moreover, this study provides insights into the consequences of these challenges and how they are managed.
Footnotes
Acknowledgments
We would like to thank the participants for sharing their valuable time and stories.
Research ethics
In Denmark, where this study was conducted, only research that entails biological material or testing of pharmacological and hospital equipment on human subjects need permission from regional or national ethics committees. Ethical approval was, therefore, not required for the inclusion of participants. The study was registered and approved by the Danish Data Protection Agency (J.nr. 2013-41-1740) and conformed with national guidelines for ethical conduct in research.
Consent
Written consent was obtained from participants with advanced cancer and participating spouses, and they were told that they could withdraw from the study at any time.
Declaration of conflicting interests
The author(s) declared no conflicts of interest with respect to the research, authorship, and publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study received funding from the following organizations: The Danish Cancer Society (R48-A2674-11-S3), University College Absalon, Sosu Nykoebing, The University of Southern Denmark, and The Danish Occupational Therapist Association.
Contributorship
The first author designed the study and collected and analyzed the data with support from the second and third authors. The first author wrote the manuscript with support from the second and third authors.
