The caregivers' narrative
Identity and Categorization
Master's thesis in Sociology: Social Problems and Social Policy
By Charlotte van Duijvenboden, UvAnetID number 10659528
Supervised by Dr. B. Da Roit and Drs. T.G. Kampen
Graduate School of Social Sciences
Acknowledgements...4 Introduction...5 Theoretical framework...10 Introduction... 10 Self-identity theory... 10 Theory of “self”... 11 Categorization theory... 12
The framework in relation to alternative approaches... 13
Conclusion... 13 Methodology...15 Introduction... 15 Approach... 15 Methods... 15 Reflection on fieldwork... 16
Case study #1 Caregivers...20
Chapter 1. Experiences of the caregivers...21
Introduction... 21 Connections... 21 Tasks... 22 Network... 26 Background... 27 Commonalities... 28 Conclusion... 31
Chapter 2. Expectations and needs from the institutions...32
Introduction...32
Hogeschool Rotterdam...32
Formal care institutions...34
Municipality...36
Mantelzorg and study...36
Conclusion...37
Chapter 3. The category...39
Introduction...39
The name...39
Perceptions on the category...40
Policy knowledge...42
Conclusion...43
Chapter 4. Identity...44
Introduction...44
Roles...44
Caring for themselves...45
Identity vs. category...45
The category's injuriousness to caregivers' identity...48
Network, category and identity...48
Conclusion...50
Case study #2 Institutions...51
Chapter 5. Institutions...52
Introduction... 52
Conclusion... 64
Conclusion...67
Summary...70
Bibliography...73
Appendix 1 Questionnaire caregivers...78
Appendix 2 Questionnaire family-members and friends...80
Appendix 3 Questionnaire institutions...81
Appendix 4 E-mail to respondents, caregivers...82
Acknowledgements
To all the dear people who have helped me throughout this thesis, how impossible it would have been without you.
Abducted by my research,
now finished and nothing more to do, except to … kindly thank you,
Introduction
Because of the decline of the welfare state (Newman & Tonkens 2011, Ilcan & Basok 2004), the amount of mantelzorgers (in English: informal caregivers, but I will use the Dutch word, for I do not think that the same connotation exists for the two words) is expected to grow in the Netherlands.1 For of the focus of policies nowadays is, in many countries, on the three dimensions
of 'active citizenship', namely choice, responsibility and participation (Newman & Tonkens 2011: 9). This focus entails that people need to do more themselves and help each other. This could very well lead to an “autonomy trap” for the people in need of help. According to Grootegoed and Van Dijk there are different definitions of public and private autonomy (2012). Where the intent of the policy is to encourage self-reliance, the outcome is that people with care needs are less reliant on the state, but more on their network, and therefore feel less autonomous (op. cit.: 690-691). Another trap can come about, as Tonkens et. al. (2009) argue in their article 'Op zoek naar weerkaatst plezier' (In search of reflected pleasure), that it's very hard for them to stop when/if it becomes too hard on them. For, as they state, they get stuck in their loyalty between the “patient's” needs and their own, and struggle with this alone (op. cit.: 26).
Mantelzorgers are a vulnerable group, for they are taking care of people they have a (strong)
connection with, mostly next to a job or study. Additionally a relatively large amount of caregivers experience social loneliness, emotional loneliness and existential loneliness (Maat et al. 2012: 4). Social loneliness means missing meaningful relationships with other people, like acquaintances and colleagues. Emotional loneliness can occur when someone misses intimate relationships, for instance when one spouse gets dementia. Existential loneliness means missing a meaningful existence: 'This form of loneliness is described as 'a lost and wondering feeling, not knowing your place in life, a feeling of uselessness' (Ibid.). This makes it a social problem as well, at least from a constructionist perspective: '… social problems are not objectively predetermined. They become real only when they are subjectively defined or perceived as problematic' (Leon-Guerrero 2005: 6). Therefore this (hidden) social problem will grow, as the amount of mantelzorgers grows.
Mantelzorgers are a fragmented group as well, they are not class or spatially bound, thus
1 SCP, Sociaal en Cultureel Planbureau:
there is no collective base. These elements make it harder and more costly to mobilize this group, for there are more incentives to create personal solutions, instead of collective action (Bonoli 2006, Da Roit and Sabatinelli 2012, Grootegoed 2013).
But what is a mantelzorger? There are examples, given by people around me, where there is a reluctance in admitting to be one, also when someone else puts “them” in that box. This could be another element to the lack of mobilization, for if you don't identify with the category, you do not necessarily feel inclined to put time and energy into that category.
Moreover, there is not one static, clear-cut definition on the category. According to the Dutch government the definition of a mantelzorger, is someone who has a personal connection with the one who (s-)he provides care for, for more than 8 hours of care per week or for more than three months on a voluntary basis (unpaid).2
Although this appears to be a clear definition, it is not. For the person in need of care could get an indication from the CIZ (the centre of indication for care) for a care load level (in Dutch: zorgzwaartepakket, ZZP).3 There are seven levels, ranging from little to a lot of care needed. In
accordance one may receive a personal budget (in Dutch: Persoonsgebonden Budget, PGB) instead of regular services.4 With this personal budget, one can hire certain organisations, for instance to
clean the house, or a mantelzorger can do this him-/herself. In the latter case, the mantelzorger can get paid through the PGB. This can put them in an dichotomous position, where: 'On the one hand, the care-givers were satisfied with the arrangement, as the payments recognised and raised their status as carers, and were seen as reward and reciprocation for their care work. Some carers had found that the contract helped manage strained relationships, by enabling a clearer differentiation of care tasks from affection. On the other hand, some who regarded themselves as employees and saw their role as equivalent to formal carers felt a greater obligation to provide high-quality care, and found that they were thanked less often and received fewer tokens of gratitude' (Grootegoed et. al. 2010: 467).
Additionally, the Dutch government also felt the need to make a division between “customary” care and mantelzorg. In a nutshell it is the informal care given, which is considered (by some) to be the normal care one gives to another, for instance to make lunch for each other
2 De rijksoverheid. Voor Nederland:
http://www.rijksoverheid.nl/onderwerpen/mantelzorg/vraag-en-antwoord/wat-is-mantelzorg.html, consulted on November 9 2013.
3 CIZ, centrum indicatie zorg: http://www.ciz.nl/voor-professionals/beleidsregels-awbz/grondslag-functie-en-zzp,
consulted on 22-12-2013.
4 De rijksoverheid. Voor Nederland:
http://www.rijksoverheid.nl/onderwerpen/algemene-wet-bijzondere-ziektekosten-
awbz/persoonsgebonden-budget-pgb?utm_campaign=sea-t-gezondheid_en_zorg-a-persoonsgebonden_budget_pgb&utm_term=%2Bpgb&gclid=CKvYru7TvLsCFSIFwwodFGEA6w, consulted on 19-12-2013.
(Grootegoed 2013: 50). The CIZ, who apply this category to indicate if someone will receive a PGB, try to include more and more care into the “customary” care category (Grootegoed 2013). As Grootegoed explains, this category is paradoxical:
'‘Customary care’ suggests care that is ‘normal’, ‘usual’ and ‘generally accepted’ (CIZ 2013a). The assumption of shared ideas and practices gives the concept its legitimacy; the Dutch government claims that the concept simply mirrors the responsibilities that are already ‘naturally’ felt between household members. But the debate on how to define customary care – a concept that, since it is said to be based on generally accepted standards, should not cause confusion in the first place – becomes more curious when one examines changing definitions over time' (op. cit.: 51).
She adds that the number of words needed to explain this category has tripled in only six years (Ibid.). Thus, explaining the boundary between mantelzorg and customary care is difficult, it depends on age, who needs the care, who gives the care, where people live and it's time bound (op.
cit.: 56). She also states: 'It seems that the more intimate the care need becomes, the fewer people
consider it a ‘normal’ family task' (op. cit.: 61). This could be one of the reasons why some people identify with the category of mantelzorger and others don't. For when the care becomes more intimate, one might not consider the care as “normal” anymore, but as mantelzorg, of course this is just an assumption. This divide makes the definition harder to maintain, for there arise more and more exceptions because of this.
This discussion shows that the very definition of mantelzorg is fluid. So which definitions are there? By whom are they given? Are these definitions accepted by the people who are defined by them? And what are the consequences of defining the tasks and mantelzorgers as such, for the ones that are being defined, their relations and the related policies?
Thus why people do or do not identify with the category isn't the only question, the consequences for mantelzorgers and policies is of importance as well. Since policies are based on certain definitions. If these definitions are not acknowledged by the people the policies are for, these policies might be misdirected. Furthermore, the government expects mantelzorgers to put the
mantelzorg-tasks before everything else, including paid work (Grootegoed 2013: 55). How can we
expect mantelzorgers to do the work for free, especially if it interferes with their paid work and other responsibilities, such as their study? Thus, another consequence of the category is, that this may result in a delay in their study or financial troubles for instance. As stated before, this group is a vulnerable one, adding these worries to their workload will only generate more stress.
There have been other researches about this topic. Many articles have been written about the negative effects of care giving, for instance loneliness (De Jong Gierveld & Dykstra 2008, McRae et. al. 2009, Van de Maat et. al. 2012), health problems like stress, anxiety and depression (Ferrara et. al. 2008, Roos et. al. 2013, Tolkacheva et. al. 2010). Additionally some articles are more neutral, namely on the quality of life of caregivers (Dyck 2009, Vellone et. al. 2008). And recently, more and more articles are about the positive sides as well (Boer et. al. 2012a, Boer et. al. 2012b, Boera et. al. 2012). Next to these topics, there are also articles to be found on the reasons for caregivers to give informal care (Palmboom et. al. 2008, Boer et. al. 2012c, Male et. al. 2010, Kooiker et. al. 2008, Oudijk et. al. 2011, Opdebeeck et. al. 2003). Furthermore, there is literature on caregivers and policy (Klerk et. al. 2009, Boer et. al. 2012d, Blok et. al. 2013). Isarin (2005) touches upon the definitions, but not on why some identify with this category (or definition) and others don't.
My interests lie within these category-makings, whether or not the people who provide care identify with these categories and why (not). To get an understanding of their reasoning, will provide information on whether or not these categories are in any way useful.
Thus the question is; How does the category mantelzorg relate to the perceptions and experiences of caregivers and employees of formal care institutions? This question will be further developed after the theoretical framework.
The theoretical relevance of this research is to add to the scientific knowledge on the topic of categorization of a dispersed group, how their experiences and meaning-making influences the category and their identity, how this category can be of damage to their identity and/or of use and its policy implications.
This thesis will start with the theoretical framework that is used to generate and analyse the data. Followed by the methodology, an interpretive perspective. Which means that knowledge and the perception of reality is contextual and created through communication (Schwartz-Shea et. al. 2012: 113). Hence, come to an understanding of the contextual knowledge provided by the caregivers and their network.
As stated above, the “group” of mantelzorgers is a heterogeneous one. Homogeneity is needed, because, as it will also become clear in the theoretical framework, that the network around the caregivers is a very important element for forming their identity. Additionally, definitions are transferred through networks. Therefore, it is of importance that, when it comes to their network, the group of caregivers have as much in common with each other as possible. Thus, to make the
group as homogeneous as possible, my focus group are students of the Hogeschool Rotterdam (school of applied sciences in Rotterdam). Additionally, not much research has been done amongst students who give care.
Then, the empirical data will be analysed in two separate parts, starting with the caregivers: their experiences, expectations of the institutions, perceptions on the category and a chapter on identity. The second part is about the relevant institutions: their view on their own tasks in regard to the caregivers, perceptions on the category, expectations from the caregivers and from the government. Lastly, a conclusion is given, according to the theories and the data that is found. At the end, a summary is given of the thesis.
Theoretical framework
Introduction
This research deals with two key concepts in social sciences: self-identity and categorization. I will use the theory of self-identity, not George Herbert Mead’s symbolic interactionist version, nor Paul Ricoeur’s hermeneutic theory of narrative identity, but rather both (Ezzy 1998). This theory is supported by the theory of the “self” by Goffman (1990). Then, the theory of categorization, based on Yanow et al. (2013). These three theories can help explain why some identify with the category
“mantelzorger” and others don't.
Self-identity theory
Becoming a caregiver can be a fateful moment, especially when a loved one suddenly falls ill, this is a phase in life in which every-day-life suddenly alters (Giddens 1991: 113). These fateful moments can have an effect on the identities of these people, as to how they perceive themselves and how others perceive them. As Alaszewski et al. argue: 'Fateful moments form an important part of individual's narratives as they threaten to undermine basic trust or the certainty that things will continue as before'1. This corresponds with Ezzy's argument:
'Ricoeur’s framework is hermeneutic in that he describes the circle of interpretations in which the “objective” events of lived experience are configured in “subjective” narratives that in turn shape decisions about actions that are again refigured in narrative …. While narrative identities are constructed intersubjectively, in interaction with others, they are also produced as part of an internal dialogue, or soliloquy. Further, narrative identities are sustained and transformed through the influence of social relationships as mediated by institutional structures' (1998: 250).
A distinctive feature of identity is the temporality of it, for life events of the past have effects on the present and leads to a symbolic reconstruction of the past into the present. Furthermore it is formed by consciousness, role taking, narratives, not only of events that have happened, also 'the resources of fiction that provide the narrative plot within which events are interpreted' (Ibid.). Thus,
1 Forum: Qualitative Social Research (FQS), Berlin:
'The remembered and anticipated events of a person’s life become the person’s life story' (Ibid.). This implies that, taking these properties into account, the network around the mantelzorgers is made up by important actors, as well as the non-human actors, such as websites, or other information sources. To see which effects the interactions between these actors have on our identities, this theory is helpful to get an understanding of what identity is and how it is formed. Additionally it will give a deeper understanding, if so at all, of how the network effects the identity.
In conclusion self-identity is: '… formed in a narrative. While a narrative configures lived experience, it is not determined by it. Narratives give lived experience a clearer, richer meaning. However, self-narratives are not free fictions …. The plots of narrative identities are formed in a complex interaction between events, imagination, significant others, routines and habits, and the structure of the soliloquy that forms a person’s self-narrative' (op. cit.: 251). The drawback is how to get a complete picture, without assumptions beforehand, overlooking anything during, and within the time given for the research. Having said this, through open and semi-open interviews and observations, it can come close.
The main critique on this theory is that it is subjected to interpretations, as Ezzy argues: 'First, the centrality of the interpretative process that has always been integral to the pragmatist tradition is again highlighted. This focus stands in contrast to methodologies that assume interview texts unproblematically reflect reality and to orientations that disregard references to reality as epistemologically problematic' (1998: 250). Nevertheless, interpretations will have to be made in every research, whether it is a quantitative or qualitative one. Additionally, Ezzy states: 'More generally, a narrative approach would focus on how the interpretive resources that people bring to situations interact with the events they experience to shape the narrative that is then produced' (op.
cit.: 251). It will be hard, or maybe even impossible, to include all the interpretive resources that
people bring to situations.
Theory of “self”
In The Presentation of Self in Everyday life by Goffman (1990), it's all about role taking and the representation of self. He distinguishes “front stage”, where people have to play a role in accordance with a certain ideal, and “back stage”, where people do not have to keep up with a certain ideal image (Goffman 1990). According to Goffman, one real “self” doesn't exist, but the
“self” is constructed out of several roles which someone plays (op. cit.: 72). These roles have to be performed according to an idealisation, or a negative idealisation (op. cit.: 44, 48). What is deemed to be ideal, is socially constructed and depends on the context. Thus the performance reveals the social norms of the society, when a positive reaction is given, it's a confirmation of these norms (Ibid.).
Categorization theory
As stated, the Dutch government gives a definition of mantelzorg on their website, although at first sight it seems a well-defined category, I have also shown that this isn't as clear as it seems. Therefore the concept of categorization is useful to this research. For if there are definitional problems, how useful can a category be? As Yanow et al. state: 'Every time these concepts and categories are used …. the meanings underlying them are reinstantiated and maintained' (2013: 41). Additionally: 'When the state and its agencies are involved—in creating identities and imposing them on its residents—power is involved, even if “only” the power of naming, rather than brute force. But as part of the actuarial practices states use in order to control that which is named, “simple” naming carries its own force (op. cit.: 42). Thus, categories are socially constructed, sometimes taking on different meanings as time goes on, so that eventually those meanings become most significant, not who or how the category initially started (op. cit.: 43). Yanow et. al. also argue: '… the more people fall outside of the category schema – the greater the indication that the taxonomy needs review. Awareness of categories’ potential injuriousness to persons’ identities can lead to a more reflective policy process, particularly when existing categories render statistical analyses problematic...' (op. cit.: 44). Hence this research will bring awareness of the category
mantelzorger and could create possibilities for a more reflexive policy process.
Next to this, the concept of categorization intertwines with the self-identity theory discussed above. As Brubaker et al. state: 'Richard Jenkins and others have developed the basic Barthian position further, emphasizing the interplay between self-identification and external categorization, and drawing attention to the various levels (individual, interactional, and institutional) and contexts (informal and formal) in which categorization processes occur' (2004). Thus the network around the
mantelzorger is of importance, not only family and acquaintances, but also the institutions, or rather
the professionals they encounter, such as an employer of the school they attend, home care professionals and general practitioners.
The framework in relation to alternative approaches
For this paragraph it is important to keep in mind what the aim of the research is, for the theoretical framework needs to be related to this aim. The aim is to describe what the implications are of the narratives and categorization on self-identity and policy.
To relate these theories with alternative approaches would mean to debate about where the interests are situated and what kind of outcomes are wanted. As Law et al. (2011) argue, the theories (and methods) used lead to a certain outcome, wanted or unwanted. Thus, for instance, when the theory of emotion work by Hochchild would be used, other outcomes are expected, relating to emotion work. Like in the article by Black (2011), this theory is deployed to show how people deal differently with emotions in different situations and tries to analyse why they do this. Although this theory could also relate to the topic, it is not the intention of this research.
Next to this, as stated, there is an interplay between identity and categorization, according to Brubaker et al. (2004), thus combining these two theories will be complementary to each other.
Conclusion
To conclude, as to why certain people would identify with the category and others do not according to the theory, relates to their consciousness, role taking and narratives of life events, symbolic reconstructions of these events, as well as resources of fiction. In the case of the caregivers it means whether or not they are conscious of what they are doing and if they think their tasks differ from other students tasks. Secondly, the role taking, not only if it's changed after they started taking care of someone, but does the role of caregiver interfere with the other roles and what is the idealisation of these roles. Lastly their experiences, what is their perception on these experiences and what has influenced them.
Then categorization, by naming power is involved. This means that by naming it
mantelzorg, creating this category, it can be helpful, such as give a voice to a vulnerable group. But
the category has also the potential to be injurious to a persons identity. In the empirical chapters both the negative and the positive sides will become clear. Furthermore, as stated, the category needs review the more people fall outside of it (Yanow et. al. 2013: 44). This is open to interpretation, for who decides when people fall outside? Since categories are socially constructed, it means that everyone has a say. Although some have more power than others. Then it's a
possibility that not identifying with the category, is a way for caregivers to resist the institutions who deploy the category, such as the government and CIZ.
Thus, the problem in theoretical terms is when people do not identify with the category, it can be because they do not see a resemblance between their identity and the category. This can have multiple reasons: for resisting its meaning given by institutions, power and/or because it's injurious to their identity. When they do not identify with the category, more and more people fall outside of it and therefore it would need to be reviewed.
Therefore, the main research question is:
How do the students of the Hogeschool Rotterdam, who would be called mantelzorgers by whomever definition, perceive and experience the meaning of this category, how do the key people around them (family or friends, employees from formal care institutions and employees of Hogeschool Rotterdam) and what are the consequences of these experiences
and perceptions for them and the policies?
And the sub questions:
• How do caregivers experience their tasks?
• What are their (caregivers) expectations of themselves and of professionals?
• What do they feel is expected from them and by whom, including family, friends and/or acquaintances?
• What are the professionals' expectations of caregivers?
• What are the perceptions of the professionals and caregivers on their tasks? • What are the caregivers and professionals' perceptions on the category?
• Do the caregivers feel these expectations and perceptions influence their identity?
• How do these perceptions, experiences expectations of the professionals and the caregivers reflect the governmental definition of mantelzorg and its policy implications?
Through this question, their construct, in that time and place, of their identity in relation to care giving and the category will become clear as far as possible. Additionally, it will become clear if the category needs review and what kind of policy implications these narratives have.
Methodology
Introduction
In this chapter, firstly, the approach will be discussed, followed by the methods that have been used to generate data and to analyse the data. Since reflexivity is an important part of interpretative methods (Schwartz-Shea et.al. 2012: 56-57), the last paragraph describes the ethics of this research and a reflection on the methods.
Approach
Since this is a study about meaning-making, the perspective will be an interpretative one. An interpretive perspective focuses on contexts and the interpretation and social construction of reality (op. cit.: 41). According to this perspective, knowledge and the perception of reality is contextual and created through communication (op. cit.: 113). Hence, I will work abductively. Starting with the puzzle mentioned in the introduction, then come to an understanding of the contextual knowledge provided by the caregivers and their network. Since deductive reasoning starts with general statements and applies general rules to come to a conclusion and the inductive point of view seeks generalizable and universal laws and/or theories and, the abductive way seeks situated knowledge (op. cit.: 27).
Methods
For generating data, semi-open in-depth interviews have been held with nine caregivers, four significant others and seven members of relevant institutions, namely the Hogeschool Rotterdam, a general practitioner, Thuiszorg (formal home care) Rotterdam, Dock & Co/ Thermiek (both welfare organisations in Rotterdam, who have a lot of contact with residents of certain neighbourhoods in Rotterdam) and Mezzo (the national association for caregivers and volunteers). Thus, these are all actors, as far as possible, who contribute to the narrative of the caregivers. This data gives an idea of what and who influences their conceptions and interpretations, which relates to the theories
concerning identity and categorization.
Unfortunately I could not include participant observation in this research. The most important reason is the fact that the tasks were too private, or I had to intrude in their private sphere.
To analyse the generated data, the interviews were coded in Atlas.ti and category analysis has been done. Meaning that the data generated from all the interviews, have been compared to each other. In this analysis the focus was on definitional problems, underlying meanings, power of naming, and the category's potential injuriousness to persons’ identities.
Reflection on fieldwork
Finding inclusion criteria for the caregivers was problematic, since there is not a clear definition of
mantelzorgers. In addition the reseach is about the experience of the caregivers, whether they think
of themselves as mantelzorgers or not. In the end, it is about categorization, therefore I made a selection based on giving any kind of care to a person close to you. I believe this is the most important one, for it differentiates from a voluntarily job, where the starting point varies from the caregivers, thus the connection is of importance. Since it is about their experience, people can decide if they think they have something to tell. This doesn't differ a lot from the definition of the government, they only add two restrictions, a time-frame and money: more than eight hours a week or longer than three months and unpaid. As stated in the introduction, this boundary isn't clear-cut, therefore I did not include the other two criteria.
During my research, I worked together with a group of students of the Hogeschool Rotterdam. They were in a project called “studenten succes” (student success), and had similar questions and a similar focus groups, namely the students who give care and the institutions that are involved in their lives.
The respondents were found in different ways. Only one was directly contacted through e-mail, a teacher forwarded my e-e-mail, see appendix 4. In this e-mail I used the time-based criteria as well (more than eight hours a week or more than three months), but during the fieldwork I found out, that it doesn't matter how much time one puts in caring for someone close to them, therefore, in selecting the other caregivers I did not use that as a criterion, see more on this topic in the chapter “Case study #1, Caregivers”. Some respondents were acquaintances of the students of the project and asked if they wanted to participate. And others were contacted after they filled in a survey that the student group made. I have not been able to get the survey, but I was told that in the end, people
were asked if they took care of loved ones and if so, if they wanted to participate in an interview. One of the group members asked those who wanted to participate, to send her an e-mail in which they gave a short description of what they did. She only disregarded the ones that take care of their own children.
Eight of the nine interviews with the caregivers were conducted with me together with one of the members of that group. One interview was conducted by myself alone. Usually one of us started and the other finished with whatever questions were not asked and/or answered yet.
One of the advantages of this collaboration was that I could find respondents somewhat easier, because the students have access to e-mail addresses and other resources of the school. Another advantage was during the interviews, because certain relevant questions were asked, which otherwise would not have been asked. A disadvantage was that for some students it is a sensitive topic, which is hard enough to talk about to friends and family, let alone two strangers (instead of one).
Because the students of the group, were students of the Instituut voor Gezondheidszorg (the Department for Healthcare), most caregivers are students in healthcare studies and female. At first sight this might seem as a problem, or bias. But the number of females in this research correlates with what is found in the research of De Vries and Van der Mooren (2010). The researchers have shown that, amongst other variables, females are more likely to give informal care than men (2010: 49). These results are common amongst other researches as well, for instance Oudijk et al. (2009) and the factsheet mantelzorg en arbeid (mantelzorg and labour) (2007). Additionally, according to the latter, because most caregivers are female, the caregivers are unevenly distributed over the labourmarket, for the labourmarket is gendered. One of the branches that a lot of females work in, is health care. Moreover, these women are seen as experts by their families and therefore additional pressure is put on them (2007: 3). This gender issue is very important, but I will not address it for it is too big of an issue and in my opinion deserves a research on its own.
After the interviews with the caregivers, they were asked if they knew any family-members and/or friends who would be willing to get interviewed by me. With most of them I made an appointment over the phone, not saying much about the interview itself. Others I contacted through e-mail, also just to make an appointment.
Most institutions I called and asked for an interview, which worked in almost all cases. I send an e-mail to Movisie, CIZ, Mezzo, Janne Verdonk and Hans van der Moolen. Movisie wasn't able to do the interview within the time frame of this research, and, as stated, CIZ was not willing.
As an example of the e-mails I wrote, the e-mail to Hans van de Moolen is shown in appendix 5. Unfortunately CIZ was unwilling to participate in this research, I have tried several ways to ensure an interview, but all failed. It is stated in one of the e-mails, that the employees of CIZ may not share confidential information. Apparently the processes and the methods that they use, are confidential. Fortunately none of the caregivers have had any experience with the CIZ and therefore, in this case, it is not a problem.
As stated, the drawback on self-identity theory is how to get a complete picture, without assumptions beforehand, without overlooking anything during the interviews and the analyses, and within the time given for the research. Next to this there is a chance that my interpretation of the interviews leads away from the intentions and meanings of the respondents. Therefore, during the interviews, I questioned their answers as much as possible, to minimize this drawback.
Furthermore, Beauchamp et al. (2001) have taken four principles into account when discussing ethics: non-maleficence, beneficence, respect for autonomy and justice. These principles do not have an order, and therefore can overrule one another if necessary (op. cit.: 65).
Non-maleficence entails not harming the vulnerable group, this is a very broad definition. Of course it entails not harming them physically and mentally, but not harming them in indirect ways as well. The most simple one is keeping the respondents anonymous. This relates to justice as well, which concerns how this knowledge is going to be used. This can be tricky, for it could be that the research will be used in ways one never thought of. For my research topic it depends on who is going to read it. If it will only be read by the university, it can do little or no harm. If it will be read by government officials it could have consequences, good or bad depending on various factors. For instance, since the research will be focussing on the different logics at work when defining what a
mantelzorger is and herewith explore these differences and see how these co-exist, leading to the
answer, if, for instance, the definition of the government is not acknowledged by the people the policies are for. If not, these policies might be misdirected. Thus this research could lead to (un-)wanted results, such as more bureaucracy (laws and regulations). This example leads to the beneficence for the group, it could be beneficial, it could make no difference, or it could lead to even more cuts in the budget.
Then, respect for autonomy. This principle is described by the authors as: 'To respect an autonomous agent is, at a minimum, to acknowledge that person's right to hold views, to make choices, and to take actions based on personal values and beliefs…. It also requires more than
non-interference in others' personal affairs…. Respect, on this account, involves acknowledging decision-making rights and enabling persons to act autonomously, whereas disrespect for autonomy involves attitudes and actions that ignore, insult, or demean others' rights of autonomy' (op. cit.: 63). This can be achieved by stating what the research is about, for the respondents to know this beforehand will not change their views on the topic.
Case study #1
Chapter 1.
Experiences of the caregivers
Introduction
In this chapter an analysis will be given of the stories of the caregivers. For reasons which are discussed in the reflection and ethics paragraph, all names of the caregivers and their significant others have been changed.
As stated in the theoretical framework, giving care to loved ones can have an effect on the identities of the caregivers, especially when their loved ones suddenly fall ill.1 It becomes part of
their narrative and symbolic identities (Ezzy 1998).
Therefore an account is given on the experiences of the caregivers. These are of course diverse. There is a connection between their diverse experiences of giving care and to how hard it is on them physically and emotionally. This chapter is outlined according to certain key dimensions, which stood out during my fieldwork. All of which are interconnected to each other. Firstly, the kind of connection that the caregivers have with the person they take care of, thus how close they are to each other. Secondly, the kind and number of tasks they perform. Followed by the importance for the caregivers of a network around them. Then, since most respondents are students of a healthcare study, what kind of background they have, is of importance as well. Lastly, there are also some commonalities amongst the experiences of the caregivers. Of course attention will be brought to these similarities. These dimensions have the most impact on their experiences and therefore on their narratives.
Connections
Firstly, the relationship the caregivers have with the person they take care of. The connection between the caregiver and the person they take care of defines their experience. For instance,
1 Forum: Qualitative Social Research (FQS), Berlin:
Jasper, student, 54 years old, he takes care of his wife, grandchildren and friends mentions: 'Yes, on the one hand I feel good about it, because I really want to do it. But on
the other hand I dislike it, because it is very close. I mean, when I do it for a stranger, then it's just a volunteering job, then it's totally different. But now you have to provide the care and there is some sort of psychological pressure from your wife or friends. Because they don't want to trouble you, like: oh my God he has to do something for me again, you know never mind, I'll do it myself. And then she does something extra, but the next day is even worse. So then it didn't work and I have to work harder, you know. So every now and then it is like the chicken or the egg story, like what is best. As long as your wife doesn't want to accept, it makes it harder on me. When she accepts it, you can make a planning'.
This quote shows that the relationship is of importance, because of the pressures that come with knowing each other, knowing the situation that you both are in. Thus, when giving care to a person close to you, it brings about more emotions and pressures that otherwise would not be there. He adds that there is a limit to the care that he can provide, but this has also to do with the connection he has to the person whom he takes care of. The closer he is to the person in need of care, the more he feels he needs to do, the more responsibility he experiences.
Additionally, the persons he takes care of, don't want to be a trouble. Which relates to the “autonomy trap”, as mentioned in the introduction, where the intent of the policy was to encourage self-reliance, the outcome is that people with care needs are less reliant on the state, but more on their network, and therefore feel less autonomous (Grootegoed et.al. 2012: 690-691).
Thus the closer the person who needs care is to the caregiver, the more pressure and emotions it involves for caregivers. Next to this, the closer the caregiver is to the person in need of care, the more responsibility the caregiver feels towards them. Thus not only is the person in need of care in an “autonomy trap”, the caregivers can become trapped too, because of their loyalty towards the person in need of care. As mentioned in the introduction, Tonkens et al. call this the “volunteers trap” (in Dutch: vrijwilligersklem), when a volunteer feels (s-)he cannot stop, they think they're irreplaceable and therefore get stuck between their loyalty and what they need and want (2009: 26). It's possible that these relationships turn to become unhealthy for either side.
Tasks
In relation to the first dimension, as mentioned before, the kind and number of tasks also play a part in the pressures and emotions giving care brings to the caregivers. For instance Fionah, who is
taking care of a little girl next door and of her step-grandmother. She experiences little pressure, because of the few tasks. She also states that she doesn't worry much about them. One could speculate that this also has to do with how close she is to those who she takes care of.
On the other hand Selena has infrequent tasks as well, she visits her father approximately once a month in a closed clinic for criminals (in Dutch: TBS kliniek), does some shopping for him and supports him emotionally. She hadn't seen her father for 13 years, when he and her mother divorced, he claimed she took side for her mother and didn't want to see her anymore. Then, three years ago, she started visiting him in the clinic. She states that she experiences pressures from other family-members, that she has to go and visit more often. Next to this, visiting is very hard on her, she states:
'Yes, like I said earlier, it is pretty depressing. After I visited, I walk around with it
for a few days, or weeks. It is not constantly in my mind, but it surfaces every now and then. So it distracts me in the first place. It also de-motivates me. Yes … it just makes me sad'.
Matthew takes care of his father, together with his sister and mother. His father was diagnosed with cancer five years ago, it was treated, but came back again in a different form. His tasks varied over time, as his father being ill also fluctuates. He, like Selena, experienced de-motivation as well:
'In school I was lacking inspiration, I put no effort in it what so ever and it just
didn't interest me what was happening at school, the lessons as well as the persons that were there and what the teachers said. At that point in time you are dealing with such different things … you're looking at your phone constantly, you don't do anything else but looking at your phone. You're constantly looking out of the window, you don't focus, you're not prepared, so I could have better not go to school at all...'
But most caregivers who have little tasks, also feel less pressured, or not at all. For example, Erdem takes care of his sister who has a cognitive and intellectual disability, together with his parents and three brothers, he doesn't have many tasks, he goes out with his sister, wants to make sure she gets out and be around other people and tries to teach her things. He answers the question:
'No, actually I don't. For example, when I want to do something with her, I just
clear my schedule. Even if it means that I have less spare time, or less time with my friends. Yes, I'd rather spend it with my sister. Family comes first'.
Kathy takes care of her mother, who's health is declining gradually, so gradually Kathy takes on more and more tasks. She has an average (meaning average for this research) amount of tasks, she adds:
'Yes, sometimes it's a bit difficult to combine everything, the care with all the
activities of school so to speak. But I like to do it, I don't see it as a burden'.
These experiences of their tasks in relation to the level of inconvenience/burden they experience, show that not only how many and what kind of tasks influence this, but also the duration and/or outlook on the situation. Additional to this, as Kathy states, even though it can be difficult, most caregivers still like to do it.
This duality shows in other accounts as well. Most of the caregivers describe that they feel good that they can do this for people they feel close to, but it can be very hard as well. For instance, Lexi, together with two brothers and two sisters, takes care of her father who was diagnosed with Parkinson's disease ten years ago and needs much care. She also stated to the question how giving care could make her feel:
'Yes well sometimes I'm really angry, or very sad. For example, it can really grab
me by the throat when I see that he gets stuck. So, for instance, when I see him putting on his coat and he doesn't succeed, that can really affect me. Because he is the one that raised me, so he learned me how to do it. And when I see him struggling, yeah, sometimes that is really sad. Then I really think: ooh, I don't want to see this. It can also make me very angry, then I think damn, I also just want a father that can give me advise … Angry and sad and yeah, it's really, mantelzorg, taking care of loved ones [in Dutch: naaste liefde], it has so many sides to it, because it is wonderful, but it is also stupid, it sucks, yeah, it's so many things. But I am less angry than sad, I think. It's more like, yeah, it's sometimes very sad when he fails at what he's trying to do, or I think damn, you're such a smart man, such a high education and you're always so nice and good to everyone...'.
Matthew mentions another example for these mixed feelings and what kind of expectations he has on himself:
'No, I think I did everything that was possible. Of course sometimes you think of
things that you might be able to do, but you're not a surgeon, or a doctor, in that area you're nothing. So at some point it was clear to me, that I couldn't do more. I can't do more and I do not want to do more, because if I'm going to think about what I can do more, eventually I'll become very stressed and depressed, well not depressed, but gloomy …. So at some point, you have to say to yourself, what can I do, what do I have to do and keep it at that. And the other stuff I'll leave to the people that are trained to do them. So yeah, you have to have clear boundaries in what you do'.
When I asked him if making those clear boundaries came easy to him, he answered:
'Not in the beginning. In the beginning I actually had a lot of trouble with that,
earlier than the rest of my family, that my father was ill again. I really felt a lot of guilt about that. Like, I should have reacted a lot sooner, I should have sent my father to the hospital a lot sooner. But afterwards, I talked about it with my mum and dad. They said, Matthew, that is nonsense, we all didn't see it coming. From that point on, it went very good. Like, you know, those people are here for that, these people are here for this and we are here for all the tasks at home and attending my dad when necessary'.
Thus not only the kind and number of tasks, the duration and/or outlook on the situation have influence on how they experience their tasks. The dualism they experience can be confusing, saddening, but also a comfort to them. For it is not only sad or burdensome, but also fulfilling and rewarding.
In executing their tasks, most of the caregivers didn't feel pressured by others, except for the example given by Selena and this example described by Matthew:
'Well, not in the sense of what I can do, but for example in the way I feel. I felt
that very much coming from my sister, for example. Because she doesn't live at home anymore and when she came home now and then, for example, and she saw that it didn't go very well with my father, she got really emotional. But not me, for example. Upon which she sometimes said: How can you react so detached? But yeah, I saw it everyday and at some point I got used to it'.
If they feel pressured also depends on who pressures them and what they say. As Lexi explains that she feels her aunt should be more involved in their lives and that involvement should come from herself and therefore she doesn't feel pressured. She says:
'When she says something to me about my father, or uhm, maybe you should do
this or that, then I think that one for you [the middle finger]. We really do everything for him, so we don't have to do anything. You should come more often, I say to myself'.
So for the most part, the pressure the caregivers feel comes from within, their expectations they have of themselves. Sometimes these pressures combined with expectations from the “outside” can multiply and sadden the caregivers.
Furthermore, a recurring theme within the interviews in relation to the tasks, is the amount of energy it takes. For instance, Matthew:
'Very much energy, you have to have a lot of energy. Especially positive energy ….
Not only for yourself, also for, yeah definitely for yourself, because when you don't wake up with positive energy, then it stops quickly. But it also helps the ones that you take care of, yes.
And when Lexi answers the question what it takes to provide the care, it also comes to the fore: 'I think about a couple of things, that it is wonderful that I can do this for my
father. That I can give him that life, you know, that he can also enjoy it, as far as I can. So for the most part I think it's wonderful. But it is also very hard. Every now and then it is worrying, how am I going to do this with the time I have. How am I going to be able to see my friends and I have a grandmother and grandfather as well, they also want to see me. They are old, so I don't feel like going all the time, because I already have someone to take care of. And it's also, well it takes up a lot of energy. It consumes energy, yeah. So it is wonderful, a little twofold, it is both.
Not only does it cost a lot of energy, in the examples of caregivers taking care of their parents it also becomes apparent that they don't want to bother them with their problems. As Matthew, for instance, describes how the positive energy is important in caring for his father, he also states that he doesn't want to bother his father with his worries:
'Look, when I got home now and then like: ah shit, again something didn't work
out at school, then my father notices. Everyday I wanted to go to the bed in which my father lays and ask how he was doing. And immediately he saw that I wasn't doing well and he also just wants me to do good at school. And when it doesn't go well at school because of him, that makes it for him extra, yeah, hard. So I come home with positive energy as much as possible, so he just doesn't, uhm yeah, that it will help him … It's hard enough on him already, so you don't want to trouble him more, you really don't'.
Taking care of someone can consume a lot of energy, whilst doing so some caregivers, who give care to one of their parents, also have to deal with the feeling that they cannot speak openly to them. The parent-child relationship and roles alter and in some cases reverse all together.
Network
As stated before, the network around the caregivers is of importance. Not only experiencing support by their network, but also that the care-taking can be divided. Lexi mentioned that her brothers and sisters are very valuable to her, for they can spread the work between them and when one of the five children is busy, someone else can take up a little more. Erdem also confirms this. Kathy's story also shows the importance of her network helping, especially her sister. Because up until now her sister isn't helping at all:
'Yes, it is frustrating now and then. Yes, well it doesn't bother me that much. I
think: well, I'll do what I want and what I can and I think that is enough. As long as I see that my mother has enough support like this and can stay reasonably
healthy then...'.
Although she states it doesn't bother her that much, her body language suggest otherwise (rolling with her eyes) and she mentioned that she is trying to accept it.
Thus for caregivers a network sure is important, to share the various tasks with others. Dividing the tasks not only relieves the workload, emotionally they know that they're not alone as well, that someone else is able to take over when needed.
Background
As the example of Matthew showed, for him, being a physiotherapist, to miss that the cancer was back, was difficult to deal with. Additionally, as mentioned in the latter chapter, caregivers who work in healthcare are seen by the others as the experts. Since most of the respondents are healthcare students, their background is of importance. This also came to the fore during the fieldwork. For instance, Sarah, she studied intermediate vocational training (in Dutch: MBO) to become a nurse for people with a cognitive and intellectual disability and now studies ergotherapy. She takes care of her mother, who has cancer. As Sarah describes:
'Well my mother has to have some sort of injection every week now and I am
capable to give them, because I am certified. But I don't want to. So now, my mother was also a nurse, so now she does it herself. But she said: If there comes a time that I can't do it anymore or I don't have the strength, would you like to do it? I said: Well, I don't want to do that!'.
Lexi studies obstetrics, but already finished her study to become a nurse. Therefore she is now able to work as a nurse in formal home care (in Dutch: thuiszorg). She stated that she tends to attract the tasks to herself and explains:
'Well I think, what I already said, I am a very eager person. Also I come from a
world in which, uhm, as a nurse you take care of people. And uh yeah, I just care deeply about it.... and I just think: let me do it, I know how it works, then it's just one quick phone call and then it'll just be done'.
Thus being trained to become a professional in care, can raise the expectations the students have on themselves and others have of them. But mostly they explain the pressures they feel, to be coming from within themselves.
Commonalities
Besides the differences, there are commonalities as well. The first one is that most caregivers state the importance of taking care of yourself. Lexi, for instance, states that it is important to think of yourself once in a while, but feels she is failing in that department:
'Enjoy life more, that's hard for me. I am a pretty eager person and because of my
dad, for example, I have the tendency to take up extra care tasks. I am very likely to go to my dad, instead of doing nothing for a day and enjoying it. I have to go to my dad, just to go out with him, or do some shopping for him, or checking something, or organising something for him. So yeah, enjoying life more would be good'.
Page has a mother diagnosed with Borderline, she is her mother's support and gets multiple calls a week when her mother isn't doing well, during these calls she has to listen, advise and calm her mother. Her father has had a heart attack some years ago and is struggling with his health. Next to this, Page has also taken care of her boyfriend's grandfather, he now lives in an elderly home, but is very stubborn and he only listens to her, thus she tries to visit once a week. She describes the importance of taking care of yourself, as well:
'I maybe very individualistic, but I think that your own health should come first.
Because when you put someone else's care before yourself, then you might not be able to keep caring for somebody else, because you forget yourself. So I think you should take care of yourself and if there is time and energy left, then you might be able to take on the care for someone else'.
Additionally, all the caregivers sort of rolled into the role of caregiver, some more abrupt than others. Furthermore, their motivation and perceptions on what they do is very similar as well. What they do, is “just” taking care of a loved one. And for the reasons why, a lot of similarities come to the fore, with slight differences in how they describe it. The most common answer is, that it is normal to give care when it's needed. For instance Kathy says:
'Because eventually you just do it, because you see that someone is struggling
with something. And yeah, then you try at least to find ways, for example ask the municipality if you can get help. And then you do get help, but yeah, you just want to do this for your family. Anyway, in my case that's a real strong motivation'.
Furthermore, some also state that somebody has to do it and if they don't, who is? As Sarah states: 'Because it has to be done. And if she can't do it herself, I'll help'.
'Just because I have to, well not because of that, I think I have to, you know. I just
see it like, I am his daughter, I am supposed to do it. And of course I also love him, despite everything ... Yeah, it is just because I am his daughter and who else is going to do it?'.
Thus loving someone is an important factor as well. Lexi also describes these two reasons: 'Well, just because I love him and because I have to, I think. Otherwise nobody
else will do this for him. So if we don't do it, nobody will. And look, home care does a lot for him, but I have to monitor them closely, so that they will be on time and that they do their jobs right'.
Additionally, when you love someone, there is some sort of connection. This connection doesn't necessary need to be a strong one. This is also brought up as a reason for their care giving. For instance Page:
'Well it will always be your mother, right? It sounds strange, I don't really have a
good connection with her, but she'll always be my mother. I mean, I still love her and I don't mind to do this for her'.
And when Page was asked why she also takes care of her boyfriend's grandfather, it becomes clear that the connection she feels to the person she takes care of, is very important:
'I have known him for a very long time, since I was 14. I don't have grandparents
myself. My grandparents of my mother's side died before I was born and the grandparents of my father side I've never known, because my father was adopted. So yeah, he was a sort of grandfather to me, so it is also some sort of family connection...'.
Next to feeling obliged and taking care of someone because of the connection you feel with them, it is also born out of wanting to give something back. As Matthew states:
'Well it is my father … He was always there for me. And it is also out of some sort
of obligation from within, from your hart. Like yeah, it's not going well with somebody that you love, in the house you live in, it is family, so you just do it. There is also nothing like, I did this for you dad, so now you have to do something for me. It's really just, you just do it. There is just no real motivation for it. It is really weird, something switches in your head, like now I'm just going to do that … yeah, it's just pure love, in the hope that all ends well. Yes, actually the motivation is that I do it, because I get something back, the hope that he will get better of course'.
Fionah and Jasper also add three others motivations, namely identity, upbringing and self-fulfilment. Fionah states:
I am a caring type, that I would do it sooner than somebody else, maybe'.
And Jasper:
'I don't know, I think it's because of my upbringing. My mother wasn't a big
supporter of all the institutions and I am my mother's son … And my parents are supporters of CDA [Christian Democratic political Party], so my mothers stayed home and my father had two or three jobs, that didn't really matter, as long as there was food on the table … my father got really demented and she never thought about putting him in an institution. But that would have been the healthiest solution, I think. But also in this case it was like, okay five children, so everyday someone comes to help, yes, like that. You just take over. You also feel good about it, I feel good about it, let me put it that way … I also think it is important to be there for other people. Before these problems came my way, I also volunteered. I had to stop, because I couldn't do everything, yes it got too much'.
Erdem also described a religious motivation (he is a Muslim), next to the other motivations that were mentioned earlier:
'First of, I am a family guy, religion is actually part of the reason for this. Because
how we deal with one another, that we have to take care of the elderly, that is purely out of respect … You help others out of respect for them, because I could have been that person that needs help … Why I do this? Firstly because I am her brother and secondly because that kind of person needs it'.
Next to this Erdem adds:
'I do it because … I am a human being, you know'.
Thus all caregivers see the importance of taking good care of themselves, although for that doesn't come easy. Furthermore, becoming a caregivers isn't a conscious choice at a certain moment in time, it's more something that evolves. Next to this, all caregivers perceive their tasks as something normal. Additionally their motivations accord to one another; it's the thing to do when you love someone, because you have to and want to, it enables you to give back, it's part of who you are, your identity (also because of upbringing), gives self-fulfilment, because of religious and humanistic believes. Hence, their narrative is for it to be normal, something you have to do and it enables you to grow as a person.
Conclusion
To conclude, what influences how the caregivers experience their tasks is: the connection between caregiver and the person receiving care, the duality of the tasks, the number and kind of tasks and the duration and/or outlook on the situation. Being healthcare students adds to the pressure the caregivers experience and can also create more expectations and pressure from others. A solid network of other caregivers around the caregiver, relieves them a little from these pressures emotionally as well as physically, for the tasks can be divided.
Furthermore, in some cases the existing roles change, or even reverse. Next to this, this research shows that becoming a caregiver isn't a conscious choice at a certain moment in time, it's more something that evolves, or you stumble into.
Additionally, the caregivers narratives indicate that they perceive their actions as self-evident, something you have to do and it enables you to grow as a person. However, it also has to do with how they see themselves, what they perceive their identity consists of. And because some caregivers link giving care to their identity, giving “it” a name can be very powerful in a negative, as well as a positive way. More will be discussed in the chapter on identity.
Chapter 2.
Expectations and needs from the institutions
Introduction
In the theoretical framework it is mentioned that identities are: '… sustained and transformed through the influence of social relationships as mediated by institutional structures' (Ezzy 1998: 250). Thus, this chapter describes the expectations and needs the caregivers have towards the institutions that have a direct influence on their life and of course are related to the subject of giving care. These institutions are the Hogeschool Rotterdam, formal care institutions such as a general practitioner, formal home care (in Dutch: thuiszorg), welfare organisations, which are concerned with caregivers, such as Dock & Co and Thermiek and the municipality. Additionally some notes are given as to how the future formal care professionals are trained, what the students have to say about their studies regarding this subject, for most of the student caregivers are doing a care related study.
Hogeschool Rotterdam
To begin with, the expectations of the caregivers from the Hogeschool Rotterdam, all students declare that if they need help, they'll go to their coach (in Dutch: Studie Loopbaan Coach). All of them have been at least to their coach and some of them also went to a dean. The caregivers who went to a dean, are the ones with the most tasks and/or the ones that worry most about their loved one(-s) who needs care. The needs and expectations of course differ, depending on the persons, how many tasks they have and in what period of their study they are, for instance some say that it is much more demanding during an internship.
Understanding and knowing that they're (the coaches and deans) there for them if they need it. Plus, if necessary, action. These are most important to the caregivers.
Matthew adds that there needs to be an understanding amongst students as well. Especially, as he argues, when they'll become professionals, then it is important that they are attentive to the
fact that there are caregivers as well as patients.
Furthermore, there are mixed experiences with how the students were treated and supported. For instance Matthew, he talked to his coach, but didn't get help. The coach advised him to come back when he really had problems getting by. He even advised him not to talk to the teachers personally and explain his situation. He explained himself to each teacher anyway and got mixed reactions, Matthew also states:
'In hindsight I think, when I would have contacted the exam commission when I
really was having problems, only then, then it would have taken another month before I would get an arrangement. At that time the holiday already started. Therefore I decided to tell every teacher personally and see what I can accomplish myself … So I could have tried it, but I also didn't really know with whom to speak. I can go to the exam commission, but then you don't really have some sort of arrangement, look, I know I can go to the exam commission for an exam or possible absence, but for a prolonged absence, I don't know where to go then'.
Matthew didn't get the feeling his coach really helped him, didn't really know where else to go and therefore came up with his own solution. An unambiguous, clear policy as to where students can go and what kind of arrangements teachers can and/or have to make, should help the situation. Matthew also adds the need of some sort of guidance:
'For instance, you notice that you are unprepared and maybe they can give tips
and advice, like you know, you can search there or whatever. Look, I'm not saying that you need to be favoured above others, you have to do just as much. But you have to take into account what everyone’s possibilities are. You know, one person comes home at 16 and does nothing for the coming 8 hours. But another person comes home at 16 and has to do stuff until 22, because, yeah, someone is ill for example. Then I think some extra help needs to be given. So study guidance is very important, I think. But also, yeah, maybe some sort of place that you can go to, where you can meet people who deal with the same things. Because now, I don't tell many people, because you don't know who you can tell. And very often, when I do meet someone here at school who is in the same situation, you have so many similarities and actually after such a conversation you think: Ah he/she also experiences those things, he/she recognises it. Then you can be yourself for a moment. So I would really like some sort of chat group and study guidance'.
On the other hand Page and Lexi, for instance, have had the reaction they were expecting from their coaches and it met with their needs as well. Page was in a similar situation as Matthew and couldn't make it to all her classes, she describes:
'… the teachers of the classes of which I often didn't attend and that were
mandatory, knew what was going on. I asked my coach if she wanted to inform them and she did'.
