Self-care is not only an individual effort, but also a highly collaborative one. Kleinman (1980) describes how a network of family, friends, and neighbors take part in disease trajectory management (Kleinman 1980, 50). Based on ethnographic studies in Denmark, Meinert and Paarup state that healthcare professionals often expect the family of a person suffering from disease to participate in treatment and rehabilitation, supporting the home patient (Meinert & Paarup 2007, 157). Therefore, when a person becomes chronically ill, it may have far-reaching implications for the organization of family social life, altering the routines of the everyday lives of the home patient and his or her relatives, and giving rise to new routines and new worries (Locker & Kaufert 1988, 32)20. Not only is the home patient expected to perform homework as described previously, but working arrangements also include relatives, when working out who must perform
20 That the disease of a home patient also affects the family is emphasized by a recent Danish study, which shows that the partners of women with breast cancer have a 40 % greater risk of developing depression that requires treatment. The findings are based on data on 1,162,596 men, collected over a period of 13 years (Kræftens Bekæmpelse 2010).
which tasks involved in treatment and care. Depending on the severity of the condition, relatives may perform the practical machine work of healthcare technology, provide personal assistance, such as helping with hygiene, getting dressed, or changing dressings, but will also perform sentimental work, reassuring and comforting the home patient; they may often escort the home patient to the hospital, attend meetings with healthcare professionals, and even serve as anchor person, managing communication among various healthcare professionals, as persons with chronic conditions are often treated for several conditions simultaneously. Thus, the relative of a home patient suffering from an illness has not only the role of relative, whether a spouse, parent, or child, but also assumes the role of caregiver, becoming a family caregiver. As does the term home patient, this term of underscores the ambiguity and potential conflicts of concerns, which the distribution of caregiving work may introduce.
Distribution of work to family caregivers may be experienced as disruptive to the social world of the home and the social relations within the context of the home. Wang and Barnard describe how parents of ventilator-dependent children experience conflicts and tensions between being a parent and a caregiver: “Reading a story and then to have your child choke and you have to suddenly step into medical mould … is often like, your brain takes ten or fifteen minutes to get into gear21” (Wang & Barnard 2008, 504). In the new working arrangement, the family caregiver may experience tensions between concerns arising from assisting with the healthcare related homework, and the concerns associated with being a parent, for example. Grøn et al. (2008) report on a Canadian ethnographic field study of the complexity and conflictual character of the rehabilitation of a teenage girl (Grøn et al. 2008, 84). The girl, Latoya, suffers from sickle cell anemia, and is wheelchair-bound, following a stroke. With the aid of her father, Mason, she participates in a home rehabilitation program to exercise and increase the flexibility of her leg muscles (ibid., 85). However, it is clear to the physiotherapists that Latoya and Mason do not adhere to the program, as her body “is shaped like a chair” (my translation) (ibid., 88). While Mason and the physiotherapist seem to agree on the goals of the program, conflicting agendas exist. A series of social issues dominate the concerns of the father, rather than adherence to the clinical program. Latoya lives with Mason, who has been awarded sole custody, as her mother has been declared unfit. Mason has a new wife, who resents the time he spends on his daughter. Additionally, his mother is
21 Verbatim quotation.
very ill, and needs his help. Furthermore, Mason feels uncomfortable performing the exercises with his daughter, as this involves firmly gripping her on the upper thighs. As he has a previous record of violent behavior, he fears that, were this to cause bruises, it might result in a charge of child abuse, and deprive him custody. Moreover, Latoya has expressed the feeling that she does not wish to live. Therefore, Mason’s priorities are to give her hope, and all the love and affection he can, rather than force her to perform exercises against her will, exercises that are painful, and of which she cannot see the purpose. Rehabilitation becomes a secondary concern, resulting in a conflictual relationship with the physiotherapist, who is frustrated by the lack of compliance on the part of the father (ibid., 88).
This working arrangement creates tension on the part of the family caregiver, who is faced with conflicting concerns of being a parent and of performing homework. This example relates back to the previous discussion of homework, compliance, and conflicting concerns between social worlds, as discussed in chapter 4, and illustrates that the complex sociality related to homework is vital for work related to the trajectory of a disease, and that social concerns may often overrule medical issues, even if the condition is serious (ibid., 89). This example further identifies implications regarding social relations in the context of the home, as the inclusion of a family caregiver in performing homework may create a degree of dependency between the family caregiver and the home patient. Locker and Kaufert (1988) elaborate on this in their study of ventilator-dependent home patients, introduced in the previous chapter, where the authors explore how oxygen treatment creates a practical dependency. Home patients who are unable to breathe on their own are in need of constant respiratory support. If the ventilator malfunctions, as many of them have experienced, they are dependent on the help of other people to perform machine work, in order to survive. Therefore, many of them feel uncomfortable being alone, and prefer constant company, either that of family caregivers or trained helpers. Closely related to the practical dependency is also a symbolic dependency on the family caregiver, where the home patient experiences a loss of independence, loss of self-esteem, and feelings of vulnerability (Locker & Kaufert 1988, 34). Such a dependence may alter the relationships that exist in a family. Douglas (1991) describes the order of the social world of the home as being based on reciprocity.
Inspired by Mauss (1990), she describes everyday life in the home as a gift community, in which family members engage in reciprocal relationships with delayed and disguised exchanges of gifts (Douglas 1991, 302). In this sense, an exchange of gifts may take the
form of favors done by the family caregiver, such as helping with homework, machine work, or simply by being present. Central to a reciprocal relationship is the symbolic exchange of gifts over time: It is through the exchange of gifts that the relationship is confirmed and reconfirmed. However, being unable to return a gift puts the recipient in debt to the giver (Mauss 1990). Such asymmetrical relationships hold potential conflicts or tensions, as the family caregiver may either feel superior, or that the generosity is being exploited, and the home patient who receives assistance may feel in endless debt, or inferior22.
Thus, the new working arrangement not only implies tensions regarding the concerns of conflicting social worlds, but may also have implications for the reciprocity of social relations in the home. Furthermore, moving healthcare services into the home, and involving family caregivers also has implications for how responsibility for treatment is experienced and distributed.