Living (longer) with incurable cancer in corona times
Learning from changes in care and finding resilience in vulnerability
Evelien van Alphen - 10823077
Master Medical Anthropology and Sociology Supervisor: Dr. B.C. (Bregje) de Kok University of Amsterdam
Anne2017 on the corona kanker.nl blog:
Acknowledgements:
First and foremost I would like to thank all my participants. They took the time to do an interview with me in a period that was hard for everyone. They all kindly took the time for me and were prepared to do interview via Zoom, a medium they often hadn’t used before. I also want to extensively thank the institutions of the Inloophuizen, and especially their kind coordinators, who gave me access to their warm spaces as well as (helping me accessing my respondents. I understand why many people love to come there and when this corona time is over I would love to visit these houses one more time.
I would like to thank my supervisor Bregje de Kok as well as Hilde Buiting in guiding me through this process. I also would like to thank my friend and family who supported me through this stressful period.
Table of contents
Introduction……… p. 5- 18
Theoretical considerations………. p. 19-27
Research questions……… p. 28
Methodology, Setting and Ethics………. p. 29-34
Overview……….. p. 35
Chapter 1: Changes in Care during the Corona crisis……….. p. 36- 49
Chapter 2: Resilience through vulnerability ………. p. 50-58
Conclusion……….p. 59-60
Bibliography………..p. 61-67
Introduction
The current status of cancer in the world
According the WHO (2018) cancer is the second leading cause of death in the world, responsible for about 1 in six deaths in 2018. The global burden and incidence of cancer is only expected to grow as population age and grow and continue to adopt lifestyles tht increase cancer risk” (Torre, Siegel, Ward & Jemal, 2015; WHO, 2018). These are the main causes attributed to Europa’s disproportionately high rates of cancer incidence, accounting for 23,4 percent of all global cancer cases while inhabiting only 9 percent of the world population. The Netherlands ranks high, even in Europa, coming in 9th out of 50 globally
when it comes to (age standardized) cancer rates (IARC in Bray et al, 2018).
People living with cancer in the Netherlands
Consequently, more and more people in the Netherlands are dealing with cancer in their lives, an estimated 800.000 people1 in the Netherlands are living with or ‘after’ cancer. (This
includes individuals whose early-stage cancer was treated and has not recurred, those living with chronic forms of cancer who are undergoing long-term treatment, people whose cancer is likely to recur and individuals with chronic cancer-related symptoms. (Berlinger & Gusmano, 2011) This number is only expected to grow (IKNL, 2019). Partly because the absolute incidence of cancer, the amount of new cases every year, has risen over the last couple of years (IKNL, 2019). In the year 2000 around 70.000 new cases were reported, compared to an estimated 110.000 cases in 2017. The same trend was found when it was corrected by population growth (IKNL, 2019). These numbers are also increasing, because survival rates have gone up. There have been, slow but steady, improvements in 5- and 10-year survival rates, mainly due to improved (early) detection methods and the development of more effective (life extending) treatments (IKNL, 2019; Dirven et al, 2015; Damhuis, 2011). In the year 2000, 45 percent of patients were still alive 5 years after diagnosis, while for patients diagnosed in 2014, those numbers had shot up to about 60 percent (IKNL, 2019). It must be noted however, that these numbers represent generalized statistics of ‘cancer’, an umbrella term incorporating more than a 100 different diseases, of which survival rates, as
1 Estimated by the NKR (Nederlandse Kanker registratie) who has been keeping track of everyone who has or had cancer in the Netherlands for 30 years (IKNL, 2019).
well as the extent to how much these survival rates have improved over the last 20 years, differ greatly, with breast, prostate and colon cancer seeing the biggest progress (Siesling et al, 2011). In addition to the differences between groups in regards to gender, ethnicity and socioeconomic status.
The survivorship discourse
Bell & Ristovski-Slijepcevic (2013) describe how new (biomedical) cancer treatments and improvements in survival rates have generated a shift from talk of cancer
victims to so called potential cancer survivors. With more people surviving cancer altogether and others surviving longer with cancer, there is a growing need for more knowledge on the challenges of this ‘survivorship’. The last 20 to 30 years the prevailing view of cancer as essentially a death sentence has shifted as cancer transformed “from a largely fatal disease to one in which a majority of those diagnosed receive treatments that result in long-term disease-free ‘survivorship’” (Bell & Ristovski-Slijepcevic, 2013, p. 409).
The term ‘cancer survivorship’ was originally coined by Fitzhugh Mullan (1985) who, as a physician that had experienced cancer himself, was searching for a term that would represent the experiences of all people who are confronted with cancer, whether they are eventually cured or not (in Broom, Kensurviny, Kirby & Lwin, 2018). Mullan founded the National Coalition of Cancer Survivorship to advocate for the idea that “from the time of its discovery and for the balance of life, an individual diagnosed with cancer is a survivor” (Bell & Ristovski-Slijepcevic, 2013, p. 409). The NCCS has recently further expanded the term, echoing the original drive to include everyone, and also include family members and other loved ones of people with cancer (Dirven, van de Poll-Franse, Aaronson & Reijneveld, 2015). Apart from defining ‘survivors’, Mullan (1985) described 3 seasons of ‘cancer survivorship’: acute survivorship (after diagnosis), extended survivorship (after primary treatment, dealing with the fear of recurrence) and permanent survivorship (having had no recurrence) (in Miller, Merry & Miller, 2008). In clinical terms, the term ‘survivor’ is actually used to describe this last phase, when someone has been disease-free for at least 5
years and goes from being in ‘remission’ 2to being ‘cured’ (Bell & Ristovski-Slijepcevic,
2013).
The term gained popularity because it brought attention to the ongoing difficulties cancer patients face during but also after primary treatment, complicating the idea that cancer is ‘over’ when one is ‘cured’ or in ‘remission’ (Bell & Ristovski-Slijepcevic, 2013; IKNL, 2019). Through a systematic review of long-term symptoms in cancer survivors, Harrington, Hansen, Moskowitz, Todd and Feuerstein (2010) indeed found that up to 10 year following primary treatment, people reported health problems as a consequence of cancer and primary treatments. The most reported symptoms were fatigue and symptoms of anxiety and depression.
Its well-intentioned goal of uniting all cancer experiences under a “singular trajectory” however, does no justice to the differences in challenges faced by family members versus patients and doesn’t look at the differences in emotional needs, or place in the care system of patients in different phases (Buiting & Bolt, 2019; Bell & Ristovski-Slijepcevic, 2013). Scholte (2020) and Dirven et al (2015) describe the lack of and need for research that makes a clear distinction between different groups of survivors.
Furthermore, the distinction between the different seasons of survivorship seems to have collapsed in the everyday use of the term, with a survivor being understood as someone who has completed treatment and is cancer-free (ibid). A 2019 survey study indeed found one of the main reasons people reject the term was because it disregarded their fear of recurrence (Berry, Davis, Godfrey Flynn, Landercasper & Deming, 2019). More importantly, “The prevailing definitions of “cancer survivor” referring to all living people diagnosed with cancer misaligns conceptually with cancer patients presently living who will die from cancer” (Berry et al, 2019, p. 3). The current focus may be well intended, but it may still ‘‘may serve to clarify certain features of the cancer experience at the expense of others’’ (Bell et al, 2013, p. 2).
2 It either means that the cancer (tumor) has diminished or that there is no evidence of the disease anymore. It does not mean a person is cured, as there is not telling if the cancer will come back or start to grow again
Living ‘longer’ with incurable cancer
A group that has been neglected and overlooked within survivor care are ‘‘Patients with life-limiting or chronic cancer’’ (Langbaum & Smith, 2019). With new and improved (life extending) treatments in oncology, a new and growing group of patients in The Netherlands are living with incurable but controlled disease. They may not beat cancer, but are living for increasingly long periods, sometimes many years beyond the initial prognoses (Bell et al, 2013 & Buiting et al., 2019 & Rose et al, 2009). Buiting et al (2019) defined these ‘protracted incurable disease trajectories’ as “a disease phase where patients receive cancer treatment such as immune therapy, hormonal treatment or chemotherapy, and whereby the disease can be considered stable or in remission for long period of time.” (pp. 2). Their ‘survival’ path differs from the three season Mullan describes, as they are surviving with not after cancer, from diagnosis till the end of life.
Unique needs and challenges
Buiting et al. (2019) concluded that patients with ‘protracted incurable cancer’ face, to an extent, different experiences and dilemmas and have different needs than patients in curative care or in the end-of-life phase. This group faces a huge amount of uncertainty as they cycle through periods where cancer can be stable, in remission or progression3. As a consequence,
their physical condition and mental state can fluctuate as well (ibid.). That is why Scholte and van Deur (2020) say that living (longer) with incurable cancer means you have to be a ‘balance artist’4. Their incurable cancer prognosis and shorter life expectancy also generated
insecurity, as they felt every day their condition could suddenly ‘turn’.5 Prolonged life despite
limited prognosis was welcomed but could also disrupt processes of acceptance of upcoming death (ibid.). The existence or promise of new life extending therapies creates a space for hope, which is countered by the inherent insecurity that comes with not knowing if and how long these new therapies will work. In general, however, with people generally being in relatively physically good shape, they were hopeful and optimistic, especially when they
3 Progression means the cancer is either growing, spreading (metastasis) or that the tumor is, in any, ‘getting
worse’.
4 ‘Evenwichtskunstenaar’
5 Of course this is influenced by (knowledge of) recurrence rates, which vary widely between different types of cancer, and also depend on patient-related factors (Blevins Primeau, 2018).
seemed to react well to treatment (Buiting et al, 2019) As their situation remained stable for “extended periods, patients grew accustomed to having cancer”, it became part of “who they were” (Buiting et al, 2019, p. 1). Clavarino, Najman and Beadle (2003) even found that the majority of their respondents with incurable cancer consciously chose to have more optimistic views on their life expectancy then their doctors prognosis gave them reason to.
Feeling (relatively) well while living with incurable cancer can be experienced as a paradox. In one of the few studies on elderly people experiencing increasingly long palliative phases, Foley, Hurard, Anchisi and Anchisi describe (2019) how people’s subjective experience of cancer is mainly one of fighting against the side effect of treatment, not cancer. They often had no idea they had cancer until the fatal diagnosis and currently hardly, if at all, noticed the effect of or progression of the disease. Recently, categorizing protracted incurable cancer disease trajectories as ‘chronic cancer’ has been proposed (Harley, Pini & Bartlett, 2015). With some conceptualizations linking back to the original idea within the survivorship discourse about the ‘chronicity’ of cancer; it never being ‘over’ (Skowronsky, Risør & Foss (2017). While other concepts refer to the hope or proposed reality of some forms of cancer becoming chronic illness with which people can live for years. Around this last definition, there has been heavy debate. I would agree with Tritter and Calan’s (2002) critique that “Although people with cancer do experience their illness at certain points as chronic, these points are interspersed with acute episodes requiring multiple intensive interventions” Also, the “initial diagnosis of cancer is clearly acute and yields a speedy and often fast-tracked response” (p. 163). Moreover, unlike most chronic diseases, the experience of cancer, let alone incurable cancer, is influenced by its strong association with mortality (ibid.). I would argue however that the term is most useful, when it is used to shine a light on the difficulties of living with chronic disease, that now seem to characterize part of the cancer experience for some people. Like other chronic diseases, people with cancer have (had to) become experts of their own condition, shouldering the burden of their disease on a day to day basis, as well as playing an increasingly large role in managing their own care (ibid.). Also, because informal care, like with other chronic diseases, becomes increasingly important, with cancer being unique when it comes to sheer volume and professional set up of voluntary organizations providing support, information and care (ibid.).
Palliative care and other forms of care
In clinical terms, anyone with incurable cancer is usually referred to as palliative. As many of my respondents use this term themselves, I will also often refer to this group that way. The palliative care approach started partly as reaction to doctor’s tendency to overtreat people, and instead put a focus on the quality instead of quantity of life. As well as the gap people fall into as standard treatment no longer works. The WHO (2014) defined palliative care as: “The prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual”. The word ‘palliative’ is derived from the Latin word ‘pallium’, meaning ‘cloak’. This is referring to the cloak of care and comfort, a ‘warm blanket’ that is supposed to ease and alleviate discomfort (Wiener, Weaver, Bell & Sansom-Daly, 2015).
A problem affecting people with incurable cancer but good prognosis is that palliative care “has traditionally been delivered late in the course of the disease” with it usually starting only from 1 year before the expected end of life. (Temel, Greeg and Muzikansky, 2010). Temel et al (2010) found evidence however, that the introduction of palliative care right after diagnosis, the same time as standard oncological care is introduced, has a positive effect on quality of life, with lower rates of depression and anxiety, results in less aggressive care at the end of life and even seemed to have a positive effect on survival by about 2 months. Nevertheless, Buiting et al (2019) found that most patients with protracted incurable cancer did not really want help, “They just wanted to continue to live, without psycho-social help”, “after the big discovery they had cancer, they had slowly found a new life balance with a positive focus”. They also didn’t feel the need to talk about their disease with friends or family (ibid.). Loughran, Rice and Robinson also found that if people living with incurable cancer wanted or received help, they preferred care that did not use the terminology ‘palliative’.
A place of ‘care’ for living with incurable cancer
Little is known about the types of (informal) care patients with incurable cancer want and receive, which is especially important as hospital visits for check-ups or treatments like immunotherapy are often scheduled every three months. A form of care that could be
particularly well suited to these patients ‘low intensity’ but long-term care needs are ‘Inloophuizen’. Inloophuizen, In English ‘Walk in houses’, are meeting places for anyone whose life has been impacted by cancer. The name is a direct reference to their ‘low threshold’ care system, meaning that, within opening hours, anyone can walk in at any time. The first Inloophuis in the Netherlands was the Vicki Brown House in Den Bosch in 1992, named after the late singer who died from cancer herself. This house is part of more than 75 Inloophuizen spread across the Netherlands under the overarching organization of IPSO6 (Den Hollander et
al, 2014). The main meeting room of the house usually resembles a living room, creating a ‘warm’ and ‘homey’ feel. Inloophuizen are financially dependent on subsidies, gifts, donations and sponsorships (IPSO, 2020). They do not focus on the medical aspects of cancer, but instead try to support people in all other aspects of living with cancer. As one of the main principles is to help people regain autonomy, the type of care provided is different for each person. Inloophuizen offer people contact with others who have gone through the same thing, so called ‘lotgenotencontact’ (contact with peers). This happens under the guidance of trained volunteers, who are often (ex) cancer patients themselves. They also offer practical information, creative and sports activities for little to no cost as well as inhouse (or links to) psychologists, physical therapists, and other professionals (IPSO, 2013). People in all phases, curative, palliative and terminal visit the Inloophuizen, as well their loved ones (Sinzer, 2019). Demographics show that about 81 percent is female, 18 percent is male and 1 percent identifies differently. Most visitors fall in the age category of 51-70 years, with less than 3 percent of all visitors being under 34. This could be partly explained by cancer being more prominent among older age groups but also says something about the image of Inloophuizen. It also falls in line with other research done on support groups. Krizek, Roberts, Ragan and Ferrara (1999) found that, although men and woman cite the same reasons for participation, three times as much women as men attended the meetings.
In 2019, the KWF7, in cooperation with IPSO, commissioned a research on the social and
economic value of the Inloophuizen for Dutch society. They found that 84 percent of visitors felt their quality of life had improved (Sinzer, 2019). They also found that 2 out of 3 guests found it easier to ask for help. 1 out of 5 visitors indeed started using new forms of care, a
6 Instellingen PsychoSociale oncologie (Institutions PscyhoSocial Oncology)
7 Koningin Wilhelmina Fonds voor de Nederlanse Kankerbestrijding (Queen Wilhelmina
third of which concerned the new use palliative care. This confirms the observations of Zitvast (2017) and Gouw (2011) that Inloophuizen are playing an increasingly important role in regional palliative networks.8 They can function both as a place for ‘pre’ palliative care,
before the end of life phase, as well as an important referral partner. Many Inloophuizen also offer ‘activities’ that focus specifically on the palliative phase (IPSO, 2020).
Unique in the Netherlands
There has been little, to no, academic research done on the inner workings of Inloophuizen. Den Hollander, Visser and van den Brom9 (2014) however did research whether these houses
are unique to the Netherlands. They did a literature review, looking at whether academic publications mentioning similar initiatives existed in countries in Australia, Asia, North America or Europa. They supplemented this by an inquiry study, reaching out to 155 international researchers who published on cancer in ‘Patient Education and Counseling’. No academic studies on comparable organization providing psychosocial care were found. They found that there were barely any initiatives in other countries that fit the Dutch concept of Inloophuizen. They found that in most places psychosocial care was located in the hospitals. Some countries had separate houses for psychosocial care, but they still operated under a hospital10. Other houses were similarly dependent on formal institutions like universities11 or
did not fit the bill because they were funded by the government12. Some houses were
independent but did not provide psycho-oncological care13. The only comparable houses were
found in Belgium, but all but one14 of them had been closed due to lack of interest at that
time. Visser et al (2015) argue that these houses may be so exclusive to the Netherlands because it fills up a gap in care. Medical care is concentrated in the hospitals, while professional psychosocial care takes place in specialized institutes outside the hospitals. The Inloophuizen fulfil an important part in providing low entrance psychosocial care.
Inloophuizen might also provide more structure, continuing support and complementary activities when compared to patient organizations. Lastly, it has been argued that
8 De Gouw (2011) also notes however, that ‘public’ contact with hospices or the palliative care sector in general are not advisable, as they could harm the positive ‘image’ of Inloophuizen.
9 Done by students and profesoors from de Hogeschool Rotterdam (Rotterdam college) 10 Like the Maggie Centres, of which 20 exist in UK, 1 in Hongkong and 1 in Barcelona 11 Like the Lebenswert Clinic in Keulen, Germany
12 Like the Bayerische Krebsgesellschaft in Munchen, Germany 13 Like the Little red door agency in the US
14 Huiserikathijs in Hasselt
Inloophuizen might fit well in the Dutch culture that values civilian and private initiatives in health care. (Visser & den Hollander, 2015). Visser et al (2014) calling Inloophuizen a ‘cradle for self-management ’15. The
Inloophuizen also seem to be unique when it comes to cancer, only a few similar meeting places exist 16 which are far from the
professional structure of the IPSO Inloophuizen.
The Positive Health concept
The Inloophuizen are based on the principle of positive health (positieve gezondheid) from
Machteld Huber (2016). She created this in opposition to the WHO’s (2006) concept of health: “Health is a state of complete physical, mental and social well-being (…)” (In Huber et al, 2016). According to Huber (2011) this conceptualization of health denies the reality that being healthy is an ongoing process in which people are striving for and maintaining health in an ever-imperfect situation. It also a very unhelpful term for people with chronic illness, like incurable cancer, who are excluding from ever being ‘in health’ again. This is why in positive health “Health is the ability to adapt and self-manage, in the face of social, physical and emotional challenges” (Huber et al, 2015, p. 2). Positive health has 6 dimensions, bodily functions, daily functioning, mental functions & perception, spiritual/existential dimension, quality of life and social & societal participation (ibid.). This is helpful especially for people with chronic illness. She found they not only scored lower on bodily functions and higher on the spiritual/existential dimension when it came to health, they also consequently devalued bodily functions and increasingly valued the spiritual/existential dimension. This suggests that chronic disease changes people’s perception of health. This made them able to feel more ‘healthy’ overall, despite lacking health when it came to the physical domain. In following the principle of positive health the Inloophuizer are a place and form of care that uniquely fits with the lived experience (of health) of people with palliative cancer. I want to look at
15 ‘Bakermat voor zelfmanagement’
how Inloophuizen construct care around this principle of positive health. I want to look at how this in turn chimes with as well as constructs people’s experience of disease.
The Corona virus
I will research both aspects I just described, the experience of incurable cancer, and how the Inloophuizen chime with this experience through a specific lens, Corona. Corona might be a good lens to look both at the ways the lived experience of incurable cancer affects
subjectivity, one’s subjective experience of the world from a unique position of standing in the world, and the way certain forms of care, especially the Inloophuizen ‘chime’ with this lived experience.
At the end of 2019, a novel coronavirus, later named COVID-19, was reported to have broken out in the Wuhan province of China (Zhu, Zhang & Wang (2019). Only a few months later, on the 11th of March, the WHO announced the COVID-19 outbreak as a pandemic. In
those few months things changed quickly. At the end of January, only a few days before the Netherlands reported its first two cases, the RIVM17 responded to concerned citizens
questions about the virus, saying that “the virus indeed seemed somewhat like the normal flu” and the disease did not seem very contagious”, as written in Elsevier magazine (Vos, 2020). They also reassured everyone that the chance of the disease coming to the Netherlands, let alone it spreading, was thought to be very low (ibid.). The NRC writes how the virus did arrive in February and began to spread quickly. At the beginning of March, a national ban on shaking hands was announced. Only three days later full measures were taken which placed the whole of the Netherlands into what was later called an ‘intelligent lockdown’
(Rottingshuis, 2020). Adhering to the Dutch, and ruling right-wing party’s 18 spirit of
maintaining citizens autonomy, this meant that everyone, except for those working in ‘vital professions’, was encouraged to work and stay at home as much as possible, but this was not mandated. All events, and gatherings of more than three people, were forbidden however. As well as any professions where people come into close contact with one another. This meant most public spaces, including restaurants, sports clubs, schools and for example the
Inloophuizen were closed (Rottinghuis, 2020). An added measure was the mandated distance
17 Rijksinstituut voor Volksgezondheid en Milieu (Government Institute for Public health and the Enviroment) 18 VVD
of 1,5 meter that was supposed to be kept with everyone that is not part of your ‘household’ (RIVM, 2020.
Impact of corona on people living with cancer
Measures surrounding the corona virus had a huge impact on the care systems people living with cancer depend on. The hospitals were under severe pressure to make sure their Intensive Care units would not be overrun. They also had to somehow separate normal patients from Covid-19 patients coming in. To release some pressure from the IC’s many ‘non urgent’ operations, check-ups and treatments, including those for cancer patients, were put on hold. A survey research done by the NFK 19(2020) with 5000 respondents, indeed showed that about
a third of all respondents experienced consequences of the corona crisis, mostly with treatments like immunotherapy and chemotherapy and sometimes even operations being postponed. Another consequence was appointments that got turned into telephone of skype calls. The clinical trials some were part of, were also all stopped. Another measure amounted to stopping the population wide screenings for cervical cancer, colon cancer and breast cancer on the 16th of march. By the 1ste of July all three of them had been resumed. The
consequences will be researched and will mostly likely only affect people who have a life expectancy of a few months when the cancer is discovered (RIVM, 2020). Other forms of care cancer patients frequently use, like physical therapy and psychotherapy, were also not possible for months during the corona period.
Cancer patients constructed as vulnerable group during Corona
The Dutch government and the RIVM (2020) places people with cancer in the risk group when it comes to corona. The RIVM (2020) states that people who are older and people with an underlying condition, which includes people with chronic lung problems and people with cancer who are receiving or have received chemotherapy in the last three months, as more vulnerable. The research done by the NFK (2020) does show that almost half of their respondents were (very) worried about getting the virus. An interesting finding of theisr was that people with incurable cancer were the most worried, 55 percent of them, while only 49 percent of people receiving curative treatment were worried and only 37 percent of people
who were cured (NFK, 2020). These results say little however, about the position of being someone with incurable cancer and why this makes people more worried. It also ignores the impact labels like ‘being a vulnerable group’ have when it comes to corona, on people’s orientation in the world. Neither does it speak about the construction of Corona as a dangerous risk in the first place. The government spoke in their press conferences about the need to protect the vulnerable in our midst. Talking about the ‘healthy’ less vulnerable people needing to step up and adhere to the measures, to protect the vulnerable groups in society. Suddenly society was split between, among other groups, people who were ‘vulnerable’ and people who were supposed to protect the vulnerable. Cancer patients were even highlighted by president Rutte in his important ‘corona press conferences’ as one of the most deserving among the vulnerable groups when it came to restarting hospital care. At the 21st he said, after explaining a welcome decrease of corona patients in the hospitals: “And regular hospital care should also be restarted as soon as possible. Someone with cancer needs help just as urgently as patients with severe corona symptoms.”
“These categories are not just empty labels. They actively construct the way people see themselves and reality, and the way they interact with others. Hacking argues in his book that people, increasingly so since the rise of biometrical statistical research in the late eighties, have been classified into groups by different kinds of authorities like governments and the social sciences. These classifications are highly time and place specific and determine the range of identities people ‘can make themselves up with’ (Millard, 2017). His idea of ‘making up people’ further states that these classification affect both the subjectivity and lives of people who are so classified (Millard, 2017). This does not mean that these labels are simply taken over by people. “They can change their behavior, they can be indifferent to the label, they can resist it, or they can adapt to fit it, and even exaggerate it” (Millard, 2017, p. 3). It might thus be interesting to see how cancer patients adapt, resist, question and change this new label of ‘at risk for corona’.
Corona as lens
The situation of corona which I have tried to shortly summarize above can be used as a lens. Both because it throws up new things but more importantly because it heightens and ‘makes visible’ already existing, perhaps taken for granted aspects of living with incurable cancer.
In the corona period, suddenly access to treatment was no longer guaranteed, with many types of care indeed being postponed. On top of that, the hospital, which usually functions as the institution that symbolizes biomedicine’s promises and achievements regarding our control of disease, has also suddenly become one of the most dangerous places when it comes to the risk of getting corona. On top of that, with the triage system looming, in the possible scenario that corona patients would overcrowd the IC, patients with palliative cancer, depending on their prognosis, have a chance of being denied access. Making the status of having incurable cancer suddenly dangerous in a whole new way. Other forms of care related to cancer are also heavily impacted, from the more formal psychologist and physical therapists to safe spaces like the ‘Inloophuizen’ and friends and family coming around to support someone in hard times, most of these are no longer possible or only possible in a adjusted form. On top of that, meaningful activities like volunteer work and hobbies, that become even more important for people whose social life has already been restricted due to disease, also became impossible.
When it comes to specifically the Inloophuizen, the corona crisis can be a lens to show if and why specific aspects of this care ‘as usual’ can’t be replicated online or in other care systems. When it comes to heightening aspects already there, we can think of the uncertainty Buiting et al (2019) talked about, which arguably heightens during the corona crisis. When check-ups and treatments are postponed, the fear and uncertainty surrounding the possible progression of cancer can also rise. The heightened vulnerability when it comes to corona and the risk of getting it, might increase already existing distrust people have in their bodies. Vulnerability also plays a role in the difficulty of maintaining meaningful activities and social contacts, which may be both more important and already limited for patients with incurable cancer. Most importantly, I want to use what both Buiting et al (2019) and Scholte & van Deur (2020) found, that people living longer with incurable cancer means you have to a ‘balance artists’. How people try to create a ‘new normal’ in an environment that might be stable overall, but where sudden disruption must always be taken into account. Might the corona crisis show us something about the way people living longer with incurable cancer deal with disruption, as they are faced with increased vulnerability in corona times?
Aim
There is not enough qualitative research that delves into the unique dilemmas of the growing group of patients living ‘longer’ with incurable cancer (Bell et al, 2013 & Buiting et al, 2019 & Rose et al, 2009). This is especially important as this group seems to fall in a gap between current survivorship and palliative care interventions. In light of this, it is important to see how these patients manage the fluctuations in their condition (themselves) and which types of (informal) care they seek out. I want to explore how certain forms of care facilitate as well as shape their search for a ‘life with cancer’. For this, I will look specifically look at palliative cancer patients who visit Inloophuizen. The literature on Inloophuizen is lacking itself, as there is little known on exactly how this type of peer support care they offer is done in practice. Furthermore little is known about the way this type of care shaped visitors subjectivity.
In this thesis, corona is used as a lens that could magnify aspects of the subjectivity of living with ‘chronic’ cancer that were already there. Corona can also show us how people use subjectivity to manage vulnerability and disruptions linked to cancer in their daily lives. My main research question is:
How do people living with incurable cancer, who visit Inloophuizen, negotiate subjectivity while searching for a ‘life with cancer’, both during and beyond the corona epidemic?
Theoretical Considerations
In this theoretical framework I will first explain the concept as seen in my main research question, subjectivity. I will try to conceptualize this ‘slippery’ subject and explain why it is relevant to study the lived experience of people with incurable chronic cancer. I will explain how subjectivity is influenced by the major biographical disruption a diagnosis of incurable cancer (continues) to constitute. I explain how narratives seem to be an integral part of mitigating this disruption but that the subjective experience of living with incurable cancer could also defy the normativity’s that underly our cultural and social use of narratives. I will dive a bit deeper into the idea that language and discourse are social processes. They do not simply reflect an individual’s experience, they are actively shaped, constructed by social and cultural contexts. I will explore how the biographical work people with cancer have to do, can be done in inloophuizen and consequently shapes by subjectivity. I will conclude by pointing out that we should be aware of the fact that resilience can also arise from the disruption caused by cancer.
Subjectivity
Subjectivity is a term that is difficult to pinpoint. Sherry Ortner (2006) states her definition of subjectivity as: “The ensemble of modes of perception, affect, thought, desire, fear and so forth that animate acting subjects. But I will always mean as well the cultural and social formations that shape, organize, and provoke those modes of affect, thoughts and so on” (Ortner, 2006, p. 37) Ortner’s definition shines light on the way subjectivity refers both to an individual’s inner modes and how they are influenced by their position in the world, as it is shaped by “prevailing social, cultural and political spaces” (Kokanović & Flore, 2017, p. 330). Subjectivity also considers how the outside world is constructed by the (collective) subjectivities of the subjects who create it. “In our encounters with others, human and non-human, our subjectivity is affected, troubled and transformed (Kokanović & Flore, 2017, p. 337). Subjectivity is an ongoing reflexive process, in which individuals continuously monitor the relation of their self and the world. (Ortner, 2006). This creates the context for negotiation and resistance of subjectivity. This reflexive process is still deeply embedded and shaped by a person’s position in the world however, as one first has to internalize their surroundings
before one can reflect on, or (partially) resist them (ibid.). In this way subjectivity is a ‘serious game’ in “actors are bound but choosing, constrained but transforming, strategically manipulating and unconscious of the frames within which they move” (Ortner in Luhrmann, 2006, p. 346).
Whyte (2009) argues that we should look at “the way health is invoked in the formation of identity and subjectivity”, because it touches on “the workings of power in relation to social differentiation and senses of self and other (Whyte, 2009, p. 6). She describes how the impact of non-health on identity is one of the most striking examples how people ‘manage spoiled identity’, like Goffman showed in his famous essay on stigma (1962) (ibid).
Shared or social identity is invoked as a reaction to this, when we saw the rise of identity politics and the ‘disability movement’, where individuals support each other under the guise of a shared identity as to rework their devalued identity and fight for recognition or rights. Subjectivity is more subtly shaped by health discourses, practices and new technologies. I am going to focus most on biosociality, which could be seen as a modern reworking of Foucault's (1980) biopower (Klawiter, 2008). He coined to term to shine a light on how increasingly “biological nature, as revealed and controlled by science, becomes the basis for sociality” (Whyte, 2009, p. 10). Rabinow described how new subjectivities, groups and social pratices arise around new biological ‘truths’ from genetic testing. I will follow Li and Wang’s (2020) approach, who looked at the formation of individual and group identity in a cancer support group, formed around the common diagnostic biomedical category of cancer. I will look at the way biosociality is done in practice as it shapes new forms of sociality in Inloophuizen, where membership is similarly dependent on (having) been diagnosed by cancer (or being the loved one of someone diagnosed with cancer). Additionally, I want to look at how these new forms of care, created through biosociality, affect people’s subjectivity. When looking at subjectivity and biosociality I will adopt a narrative lens, to see how the biosociality surrounding Inloophuizen facilitates as well as shapes narratives about cancer. But first, I want to look at the relevance of narrative for people with cancer, in relation to biographical disruption.
Biographical disruption
Narrative is “one of the main forms through which we perceive, experience, and judge our actions and the course and value of our lives” (Hyden, 1995
, p. 49). Sacks (1978) how storytelling is one of the most common way for people to package their experiences (In Mandelbaum, 2013). Narratives are imperative for infusing everyday life with meaning (Hyden, 1995). To understand the specific relevance of narratives for people with ‘chronic’ cancer, we can turn to Bury’s (1982) work on biographical disruption.
In 1991 Giddens coined the term ‘fateful moments’. According to him “fateful moments are times when events come together in such a way that an individual stands, as it were, as a crossroads in his existence” (Giddens, 1991, p. 113). Giddens argued we should study these ‘critical situations’ because “We can learn a good deal about day-to-day situations in routine settings from analyzing circumstances in which those settings are radically disturbed” (in Bury, 1982, p. 179). According to Brown & De Graaf (2013) receiving the diagnoses terminal cancer is a perfect case study to look at people’s taken for granted assumptions about their life (worlds), and how this can ‘‘undermine patients assumptions pertaining to the enduring stability of the self ’’. They are taking inspiration from Bury’s (1982) concept of ‘biographical narrative disruption’ which he applied to the experience of chronic illness, looking primarily at stroke victims. He described it as a “kind of experience where the structures of everyday life and the forms of knowledge which underpin them are disrupted” (p. 169). “Chronic illness involves a recognition of the worlds of pain and suffering, possibly even of death, which are normally only seen as distant possibilities or the plight of others” (Bury, 1982, p. 169). Especially illness that persists over a longer period of time can ‘‘constitute a major instance of biographical disruption in which the relations between body, mind and everyday life are threatened’’ (Bury, 2002, p. 264). Bury (1982) describes three aspects of this disruption, first the “disruption of taken for granted assumptions and behaviors” (p. 171). Symptoms first thought to be a simple nuisance turn out to be a serious disease, often making the assumption that one’s body is healthy as a standard suddenly painfully clear. Secondly, people’s explanatory frameworks are disrupted, which makes a ‘fundamental re-thinking of the person’s biography and self-concept’ necessary. Lastly, Bury (1982) talks about people’s response to disruption by the mobilization of resources
Bury talked about chronic disease; although cancer is usually not conceptualized as such, but as mentioned, extended cancer disease trajectories are becoming more standard. On top of that, more and more knowledge is coming out which suggests that, even after ‘surviving’ or healing from cancer, the psychosocial (after) effects of disease and treatment, could be argued to have an almost permanent or chronic effect on people’s lives. Hence, cancer may result in a similar form of biographical disruption and it is this biograph disruption which I would like to explore in light of how people create a new normal, especially when thinking about chronicity in cancer.
Illness narratives and temporality
To counter disruption, especially when it comes to establishing a new position of standing in the world, “for the chronically ill, the reconstruction of one’s own life story is of central importance” (Williams in Hyden, 1995, p. 51). A way of achieving this is by placing this disruption into in the context of one’s own life history by constructing and presenting a ‘personal narrative’ (Bury, 2002). Yaskowich and Stam (2003) call this ‘biographical work’. These narratives are usually studied in the context of ‘illness narratives’ (Ezzy, 2000). This ‘talk’ or personal narrative is an attempt to manage and cope with the disruptive events and experiences (Bury, 2001, p. 281). It is important to realize that these personal narratives may provide more insights in the subjective experience of illness, but they are always created in interaction with the social and cultural surroundings and are shaped by existing language, metaphors and discourse. This means that some experiences might be more easily
‘narrativized’ and certain narratives might circulate easier in a social environment or the mass media. All this depends heavily on the ‘context of illness’. Drawing on Goffman (1963) Tritter and Calnan (2002) describe how historically a cancer diagnosis has been surrounded by intense stigma, leading to social alienation. Trillin (1981), who noticed being treated different after getting cancer, philosophizes that people keep their distance to keep the illusion intact that cancer, or in fact death, could never happen to them.
New subjectivities can be formed and reshaped through illness narratives but these narratives are also shared, produced and restricted by, among others, popular discourse as well as the “norms that govern the articulation of the narrative” itself (Kokanović & Flore, 2017; Kenny,
Broom, Kirby, Wyld and Lwin, 2017). Ellingson & Borofka (2017) argue that ‘‘cancer stories with open-ended and ambiguous endings can (often) find no intelligible cultural narrative models through which to understand themselves’’ ( p. 2). One of the uniquely defining features of a narrative is that it gives events happening in time meaning, by placing them in a unified thematic and temporal whole, where the past, present and future connect (Kenny, Kirby, Wyld and Lwin, 2017). Because of this narratives value coherence. But for people with incurable cancer, the future is fraught with insecurity, which is why the experience often resists ‘narrative coherence (Kenny et al, 2017). Kokanovic and Flore (2017) write how this normative coherence is also part of the popular survivorship discourse, which its focus on a meaningful story surrounding surviving cancer, which leaves little room for narratives of uncertainty, disorder and incoherence and even dying. Segal (2010) (being a physicians and cancer patient herself) and Williams (2000) also criticize the ‘narrative hegemony’ of the positive story in popular discourse of cancer, which can differ greatly from the actual lived experience of (incurable) cancer.
As we have seen, incurable cancer mainly resists narrative coherence because of the unique experience of temporality. I want to zoom in a bit more on this. The subjectivity of living with incurable cancer is, for a great part, “created, maintained and transformed” through the uncertain futures people face (Kokanovic, Flore, 2019, p. 330). People living with incurable cancer live in ‘terminal anticipation’, because death is certain but the timing certainly not (Kenny et al, 2017; Brown & de Graaf, 2013). Brown and de Graaf show (2013) how this led to people creatively managing “future-time, a specific quantity and quality of time envisaged in the near or more distant future, in the context of uncertainty and vulnerability because of their illness” (p. 556). They found that one of the ways to manage such uncertain futures was to bracket them off and focus on living in the moment and thinking and feeling positive. Trillin (1981) (having cancer herself) describes this as cancer patients’ ‘talisman of the moment’. Empirical research done by van Laarhoven, Schilderman, Verhagen and Prins (2011) confirms that advanced cancer indeed impacts the way people experience time, leading to the present time dominating.
Brown and de Graaf (2013) also found that uncertain future not only led to a focus on everyday life, the very uncertainty of the future could also be used to maintain the possibility, and thus hope, of (longer) future.
We see here that resisting disruption is also done through action. Bury (1982) writes about the need to maintain ‘normal’ activities and key relationships in the face of disruption. As
disability brings limitation, people usually had to accept a ‘new normal’ however. For example, in the face of disruption, Balmer, Griffiths and Dunn (2014) found that cancer patients with a poor prognosis found it very important to establish a new normal. Lewis, Haberman and Wallhager (1987) found that adults with late-stage cancer actively mitigated the disruptive elements of their disease by looking for and investing meaning in the parts of their (daily) lives they could control and subsequently normalize, despite their illness.
Narratives among support groups
To circle back to biosociality, I now want to explore, following Yaskowich and Stam (2003) how the Inloophuizen, as formed by biosociality, can be seen as a place that facilitates biographical work. 20Like we have seen in the sections above, the ‘narrative negotiation of identity’ is not without its obstacles. Yaskowich and Stam (2003) zoom in on the issue of having changed (due to cancer), an experience most people in their social world don’t fully understand. They describe how people feel like they have to recover their voices. Cancer peer support group make this easier, as it is a separate social place where people can rehearse and develop their unfolding account of illness in front of an audience that ‘understands’. Ussher, Kirsten, Butow and Sandoval (2006) similarly looked at cancer support groups and found that people indeed talked about the benefits of the group in juxtaposition with ‘the outside world’. They described it as having a “unique sense of community, unconditional acceptance and information, in contrast to the isolation, rejection and lack of knowledge experienced outside the group” (Ussher et al, 2006, p. 2573). The participants felt people were finally listening to them. The shared understanding was perhaps most obvious in the abundant use of humor, which both allowed painful issues to be addressed without the positive group dynamic collapsing, as well establishing a sense of group coherence. As only they, within this group, could joke about cancer and actually laugh about it. We see here how subjectivity is affected by narratives and discourse within these groups. As people develop narratives through peer support contact, or even shared activities like in the Inloophuizen, their subjectivity is also
20 Most scholarly work on cancer support groups talks about their positive effect as well as perhaps some of its downfalls. One study done by Helgeson, Cohen, Schulz and Yasko (2000) however, found the potential for actual harm. They found that support group participation seeemed to harm women who were satisfied about their support system, as they revalued their relationships in a negative light.
affected. Li and Wang (2020) looked at cancer support groups in China and found that these group instilled a form of shared identity in its members, that subsequently empowered them.
Yaskowich and Stam (2003) wrote about cancer support groups as making the difficult biographical work easier. Still, cancer support groups, like any other place, still facilitate certain narratives above others. Talking about cancer, even among fellow (ex) patients, is far from a neutral enterprise. How do support groups manage facilitate ‘difficult talk’ about subjects like serious illness and mortality? To get at this, we must look at this talk with a discursive lens. Album (1996) wrote about the unwritten rules he found that governed the talk of illness between patients (in Werner, Isaksen & Malterud (2004). People were not supposed to complain or affect others by showing signs of restlessness. If people talked about
difficulties it has to be in a cheerful voice. People should not talk too much about anything that could be offensive and self-pitying remarks where only allowed when there was a specific opening.
Wilkinson & C. Kitzinger (2000) looked at breast cancer patients talking about ‘thinking positive’ from a discursive perspective. They argue that statements about ‘thinking positive’, rather than being a representations of people’s internal cognitive state, should be seen as ‘conversational idioms’. It should not be forgotten that these patients are living in a social and cultural environment where ‘thinking positive’ has become somewhat of a ‘pervasive societal moral norm (Wilkinson & Kitzinger, 2000, p. 801). As the ‘thinking positive’ narrative supposes that “thinking positive is correlated with- and by extension causally implicated in- individuals’ mortality rates, and their overall level of mental health” (Wilkinson & Kitzinger, 2000, p. 797). Some critics have pointed out how the focus and cultural value placed on thinking positive could make other affects like dread or despair harder to circulate (Broom, Kenny, Kirby, Lwin, 2018). Wilkinson and Kitzinger (2000) did find that “The claim to be thinking positively is made, in part, to protect themselves against accusations of complicity in the onset and progression of their cancer - of having brought their suffering upon themselves” (Wilkinson & Kitzinger, 2000, p. 809). But they also found that the idiom of ‘thinking positive’ can serve the function of facilitating ‘troubled talk’, by summarizing an otherwise gloomy story and creating space for others to speak up (Holt in Wilkinson & Kitzinger, 2000). An idiom as ‘thinking positive’ also allows members of a group who share this idiom to connect their personal narrative to a shared idea. This linking allows someone to reinforce their status of belonging to a socio-cultural group. An idiom as
‘thinking positive’ also allows members of a group who share this idiom to connect their personal narrative to a shared idea. This linking allows someone to reinforce their status of belonging to a socio-cultural group. This can be important in group constructed around biosociality.
Resilience
In the past sections I have talked about the (biographically) disruptive effects (living with) a cancer diagnosis can have on somebody. However, it must not be forgotten that a person’s life history, knowledge and experiences (which now include living with cancer) can also form the basis from which an individual can creatively reconfigure their (sense of) self. These moments or experiences might be disruptive, but also have the potential for reflection and can open up space for a new direction of individual social action. For this, I also want to focus my attention on the concept of resilience. With most research still focusing on the negative consequences of cancer, Panter-Brick (2014) found that “there is growing momentum to shift attention from risk to resilience in health research and practice” (Panter-Brick, 2014, p. 432). In part, research might have shied away from studying resilience because of the difficulty of defining the term. It is theorized as a baseline characteristic or trait, a process of positive adaptation over time as well as an outcome or consequence of hardship. Looking at resilience could prove to be a “counter-narrative to discourses of vulnerability and social suffering” which could in turn counteract the process of “situating whole communities within a
discourse of victimization, negating agency capabilities and strengths” (Almedom et all, 2010 in Panter-Brick, 2014). This is important especially in the corona crisis. Like I mentioned before, in the corona crisis a narrative of vulnerability was set out by the government regarding cancer patients. By looking at people’s resilience we leave room for, possible, resistance to such narratives of vulnerability. In this way, we also need to look at how such narratives affect their subjectivity and if people reproduced or resist such public narratives.
One important dimension important in cancer care is resilience as transformation (Panter-Brick, 2014). There has been substantial interest in reported growth after experiencing or living through cancer (Moline et al, 2014) In the field of mental health, this transformation is often connected to the idea of ‘positive psychology’. The idea is that after a traumatic event, meaningful growth can occur “as a result of a struggle with deeply challenging life
circumstances. Many cancer survivors have reported positive outcomes, such as growth and improved QOL (Aspinwall & MacNamara, 2005; Lelorain, Tessier, Florin, & Bonnaud-Antignac, 2012 in Moline et al, 2014) I want to take this perspective even further, by looking at a person’s position in the world, even if it is characterized by something which is supposed to make them more vulnerable, like living through cancer, gives someone unique tools to negotiate the effects of the hardship they face. With corona being an excellent case study for this.
Research questions:
In light of the theoretical and conceptualization considering I have described above, I will now lay out my main research question and my sub questions.
Main question:
How do people living with incurable cancer, who visit Inloophuizen, negotiate subjectivity while searching for a ‘life with cancer’, both during and beyond the corona epidemic?
Sub questions
a) How did people living longer with incurable cancer experience this corona time and changes in care?
b) How do these changes show how certain types of care ‘chime’ with their experience of disease as well as construct their subjectivity?
c) How do people resist or incorporate (narratives of) increased vulnerability in corona times and what does this say about their resilience in facing cancer?
Setting and Methods
Before I start describing the settings I did research in, I will shortly describe how my research was affected by the corona crisis.
Impact of the corona crisis
At the time I had to decide about the topic for my thesis, I got into contact with researcher Hilde Buiting. After some informal talks and discussion, we decided I would do a research, under her guidance, that would focus on the unique dilemmas of people living longer with cancer, especially when it comes to them ‘accepting’ or ‘fighting’ their disease. The plan was to do joint interviews at several hospitals in the Netherlands. Aside from that, I would do observations at several Inloophuizen, which could give us data about what people talk about ‘naturally’, outside of an interview setting. After doing about 2 weeks of observations at the 2 Inloophuizen, the corona crisis happened, and the Inloophuizen all closed. The interviews at the hospital also become impossible. Luckily, through the contacts I had already made at the Inloophuizen, I was able to do online interviews with Inloophuizen guests. The focus slightly changed, as the topic of these interviews became guests experience of the corona crisis. However, the aim was still to use this situation, corona, as a lens to see the multitude of ways cancer impacts people’s lives and subjectivity.
Observations at the Inloophuizen
Access to the Inloophuizen has been arranged by first obtaining consent from the overarching organization IPSO, which then provided the information of two interested Inloophuizen to me. A third Inloophuis was contacted later by Hilde Buiting. Access to the houses, its visitors and organized activities has always gone through the coordinators of the Inloophuizen and the volunteers. Before the corona crisis started I managed to do about 2 weeks of
observations. I spent several afternoons in both Inloophuizen just ‘hanging out’ in the living room, talking and listening to people. I participated in several sport and creative activities. I also joined an evening group meeting, specifically for women between 25 and 45. Whenever I attended an activity or just ‘hung’ out in the living room, me or a volunteer explained my presence. In accordance with IPSO’s wishes, I tried to make my presence as unobtrusive as possible. I did not actively take notes, nor did I ask questions that would not be already part
of the conversation. I soon noticed though, that nobody found my presence distressing. People liked to talk to me and were very interested in my research.
The two houses I went two different greatly in some aspects. One house was set up in a very professional way, with many activities, and many in-house health professionals. With its living room of looking out over a lake, it’s ambiance could be sad to be calming and peaceful. The other house had less activities. It’s ambiance also reflected it’s surrounding, as it was in a small(er) town in the South of the Netherlands. Everyone knew each other which meant a lot of chatting, laughing and talking loudly.
When the Inloophuizen closed, online alternatives organized by the staff started to pop up. One Inloophuis started to do 40 minute ‘online coffee hours’, to mimic the live social gatherings usually happening in the Inloophuizen and are similarly organized after rhe (online) sport sessions. 2 trained volunteers also attended these talks. I attended 5 sessions. I wanted to attend these sessions to see how people talked about the corona crisis amongst each other. I also wanted to counter a possible bias in respondents that were mostly picked by the coordinators. I had heard from volunteers and staff that the corona crisis was very hard for some people, but I did not see this as much in my interviews. So I joined the coffee hours to see if there were perspectives I was missing. Lastly, I wanted to see how these online coffee hours differed from the ‘live’ ones, were there aspects an online version could not replace?
Online Forum
From the coordinators at the Inloophuizen I head they would refer people who had trouble dealing with the situation to the forum on Kanker.nl. It has a specific forum, for people to share and comment on posts about their experiences in this corona time. This extra avenue of data collection was meant to gather narratives and perspectives from people perhaps less likely to do an interview or visit a ‘coffee hour’. Blogs are also places where people can, arguably, speak more freely. They don’t have to be as ‘socially correct’ as when they are speaking to an actual person, let alone while doing an interview.
Zoom interviews
My respondents for the Zoom interviews were either recruited personally through the coordinators of the Inloophuizen, or responded to me directly through an e-mail the coordinators had sent. In the end, I did an online Zoom interview with 11 guests from three different Inloophuizen in the Netherlands. Most interview were about an hour long, with 2
interviews taken up about 2 hours. I did not encounter much problems with digital literacy, not even with older participants. To make the building of rapport easier, I followed Dean and Wakefield’s advice of making sure to have some form of contact, usually by telephone, before the interview. The interviews were semi-structured, meaning I had prepared certain questions and themes, without a specific way or chronology of asking them. I put the themes my respondents wanted to discuss above my own question though, as I was particularly interested in what mattered for them, in this corona period. After the first eleven interviews, 3 follow up interviews were done by Hilde Buiting, a few months later. These short interviews, about 20 min, were meant to be gain an understanding how people were doing now, as well as how they looked back on the situation differently.
Research participants
My research participants were people visiting 3 Inloophuizen in the Netherlands, most of them were palliative, some were ‘cured’ or in remission. One Inloophuis in the South of the Netherlands, one in the surrounding area of the capital and one in the North of the
Netherlands. The inclusion criteria for people with palliative cancer were that they had been living with cancer for more than 1 year and that they prognosis was ‘good’, at least 1 year. I also included people who were in remission, to look at they ways their experiences were similar or different from those with palliative cancer. It could also shine a light on the ways these groups are similar, as both of them are dealing with the ‘chronic’ effects of cancer.
Pseudonyms Gende r Age rang
e
Type of Cancer Disease
phase Duration living with cancer
Inloophuis
Annie Female 65+ Breast cancer remission 2019-2020 Centre since 1 year Hannis Male 65+ Prostate cancer palliative 2016-now Centre since
2016 Johanna Female 65+ Breast cancer remission 2012-2015 Centre since
2014 l
Gina Female
40-50 Recurrent Breast cancer palliative 2011 first diagnosis 2019-now
Centre since 2019
Hans Male 65+ Cured from
Hodgkin’s lymphoma Now Prostate cancer
palliative 1980
2018-now Centre since 2018
Amanda Female
40-50 Non-Hodgkin’s lymphoma palliative 2019-now Centre since 2019
Ingrid Female
40-50 Cervical cancer palliative 2019-now North since 2020
Amira Female
30-40 Breast cancer in remission 2017-2019 South, not actively visiting
Odette Female
50-60 Breast cancer and Lung cancer los elkaar
In
remission 2019-2020 South since 2019
Gertrude Female
50-60 (daughter with) brain tumor palliative 2013-now Inloophuis South since 2013
Annemijn Female
40-50 Breast cancer Cured for several years
2012-2016 Inloophuis South since 2015
Ethics
The proposal for this research has gone through the Uva Ethics board and gained approval. Arguably, the group I am working with is a vulnerable group, due to their health status. The topic of incurable cancer, and thus possibly end of life, can be distressing for people (Phibbs, 2002, p. 106). On top of that the corona period could be a stressful period for people. To mitigate these two risks I structured the interviews so that people had ample opportunity to steer the interview in the direction of what they wanted to talk about. To make this research be beneficial for my respondents, I will write a separate research paper for the Inloophuizen. I also take great care to make sure my reporting fits with the experiences of my respondents. To avoid the tendency of researchers to focus too much on their own research agenda’s and in the process “distort reality into clarity” (Law, 2004, p. 2).
Data storage and informed consent
Before the interview started, I would verbally ask for consent to start recording. I gave my respondents the option to ‘call’ with video or not. One person decided to call without video. I explained that I would use the video’s to transcribe the interview and that the video’s would be deleted once my thesis was finished. I also explained the purpose of my study and told them that their names, and other personal data like city names, would be anonymized.
When it came to personal data, I anonymized all my data as standard practice. I kept personal details separate from interview transcripts with pseudonyms. I did not use the actual names of the Inloophuizen in my thesis. When it came to the blogs, I decided to also give them different pseudonyms, as the pseudonyms used on the website were often too similar to their real names.
Data analysis
To analyze my data (Inloophuizen observations, zoom interviews transcriptions, blogs, coffee hours) I used thematic analysis (Green and Thorogood, 2004, p. 177). I analyzed the content of my data and categorized recurrent or common themes. From the first data collection, inspired by the idea of grounded theory, I already looked at themes that emerged, and let those themes inspire further research. Throughout the research I adopted a ‘flexible research strategy’. As there is so little known about the specific needs and dilemmas of this group, I
want to maximize the possibility of new themes emerging from the field (Green and
Thorogood, 2004). I coded different excerpts, by using in Vivo, and then placed several codes under overarching themes. After I had ‘discovered’ all the themes, I also looked at the possible relationships between them. With these different themes, I have tried to weave a story that, as much as possible, shows the complexities of the experiences of my respondents (Emerson et al, 2011)
Reflection on positionality
When it comes to positionality, I want to briefly mention two things. First, even though I am doing research in my own culture, the group and settings I did research in was unfamiliar to me. Like Gerhard Nijhod (2001) realized, when he became a cancer patient himself, as a healthy person, it’s hard to fully understand the experience of the ‘sick’ (in van der Geest & Finkler, 2004, p, 1999). My interest in this subject however, did come from my own experience of losing my mother from cancer. I did not discuss this with any of my respondents though. This experience has given me more ‘feeling’ with the topic but it can also constitute a bias I am aware of.
Overview
In the first chapter I will look at the changes in care the corona crisis created and how this showed the importance of personal, long term care for patient with cancer, especially those living longer with incurable cancer. As the hospital were often too busy or only offered impersonal contact, they Inloophuizen became an important form of support in the corona crisis, showing the added benefit of this type of community driven personal care. I will then dive a bit deeper into the care the Inloophuizen offer and why it ‘works’.
In the second chapter I will focus on the vulnerability that was created through the corona crisis, and how people managed this vulnerability by drawing on ‘what they’ve learned’ from managing cancer. One the ways this was done, living in the moment,
substituted a challenge for particularly people living longer with incurable cancer however, as they could experience corona as infringing on their ability ‘to make the most out of the present moment’. I will also show how narratives of vulnerability, as seen in the press and put out by the government, were resisted by my respondents, by drawing upon a shared resilience in the face of cancer, as well as corona.
