Being, feeling and acting: A qualitative study of Swedish home-help care recipients' understandings of dependence and independence

Being, feeling and acting: A qualitative study of Swedish home-help care recipients' understandings of dependence and independence

Journal of Aging Studies 24 (2010) 75–87 Contents lists available at ScienceDirect Journal of Aging Studies j o u r n a l h o m e p a g e : w w w. e...

226KB Sizes 0 Downloads 19 Views

Journal of Aging Studies 24 (2010) 75–87

Contents lists available at ScienceDirect

Journal of Aging Studies j o u r n a l h o m e p a g e : w w w. e l s ev i e r. c o m / l o c a t e / j a g i n g

Being, feeling and acting: A qualitative study of Swedish home-help care recipients' understandings of dependence and independence Gunhild Hammarström a,⁎, Sandra Torres b a b

Department of Sociology, Uppsala University, Sweden National Institute for the Study of Ageing and Later Life (NISAL), Linköping University, Sweden

a r t i c l e

i n f o

Article history: Received 3 April 2008 Received in revised form 29 September 2008 Accepted 29 October 2008 Keywords: Dependence Independence Home-help care recipients Elderly people Sweden

a b s t r a c t This article contributes to the debate on dependence and independence through a study of how a group of 29 cognitively healthy Swedish home-help care recipients between the ages of 77 and 93 perceive their situation. Two overall themes with regards to how the constructs of dependence and independence are understood were found. One of them concerns how being in need of help can be justified (i.e. the why of receiving help) and the other how the very situation of being in need of help and care can be regarded (i.e. the how of receiving help). The study reveals a clear distinction between receiving help and care and feeling dependent, as well as between receiving help and care and being able to remain an active agent. On the basis of these findings we argue for the fruitfulness of distinguishing between ‘being’, ‘feeling’ and ‘acting’ as aspects of dependence and independence. © 2009 Elsevier Inc. All rights reserved.

Introduction The phenomena of dependence and independence are complex with a multiplicity of meanings in the literature, and consequently the constructs in question are subjects of debate and criticism, especially in the context of elderly care. One of the objects of debate is the relationship between care and dependence, both on the structural and individual level. On the macro level, for example, the thesis of structured dependence suggests that the welfare state can create and legitimate dependence in old age through its pension system and the various public care services it provides (Townsend, 1981, 2006; cf. Estes, Swan & Gerard, 1982; Walker, 1981). Townsend treats dependence as synonymous with reliance on state benefits, and the validity of this view for the Scandinavian context known for its universal welfare policies and elderly care has been called into question by, among others, Daatland (1998). Swedish old age policy stresses, for example, older people's right to independence and influence over ⁎ Corresponding author. Department of Sociology, Uppsala University, Box 624, S-751 26 Uppsala, Sweden. Tel.: +46 18 741 12 01. E-mail address: [email protected] (G. Hammarström). 0890-4065/$ – see front matter © 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.jaging.2008.10.002

their everyday lives, in addition to their right to be treated with respect, being able to age in safety, and having access to services and health care of good quality (Government Bill 1997/98:113). This policy emphasizes, in other words, older people's rights to self-determination, autonomy, integrity, freedom and choice. The fact that welfare states such as Sweden have been argued to create dependence while at the same time trying to combat it illuminate some of the problems one can encounter when trying to study the relationship between receiving help and care and dependence and when applying the constructs dependence and independence to the lives of home-help care recipients. With regards to the Swedish context which is this article's point of departure it must be mentioned that home-help is an essential element of the welfare provision for older people in this country. The pillar of Swedish elderly care policy is formal care, where the public sphere bears the main responsibility. The main goal is aging in place which means that older people should live in their own home as long as possible and get their needs for help and care met by publicly organized and financed home-help services (Government Bill 1987/88:176). Thus, home-help services are one of the universal rights that Swedish older people can receive if they apply for and

76

G. Hammarström, S. Torres / Journal of Aging Studies 24 (2010) 75–87

undergo an individual assessment of needs based on their ability to manage everyday activities. Home-helpers assist older people with personal care, for instance showering or bathing, dressing, eating and getting in or out of bed, as well as with domestic tasks, such as cleaning, washing, shopping, preparing food etc. To this extent it must be mentioned that Swedish public home-help is subsidised, but users are charged a minor fee depending on their personal income and the scope of the intervention they need (Trydegård, 2000). The home-help services are also supposed to relieve family members from their daily caring duties by facilitating more personal and independent relations between older people and their families (cf. Rauch, 2007). Reality, however, can be quite different from this goal. Studies have, for example, shown that spouses and other family members offer at least two or three times more care to their older relatives who are still living at home than what is offered to them by public home-help services (Szebehely, 1998). Thus, it has been argued that due to fiscal restraints and the accompanying cutbacks in public care that have been brought about in recent years, increased societal expectations have been placed on adult children and other relatives to assist in achieving the Swedish elderly care goal of aging in place (e.g. Szebehely, 1998; cf. Rauch, 2007). Another way to describe the situation is that the goal of aging in place presupposes complementary assistance from relatives (Hammarström, 2006). Thus, older Swedes in need of support and care have two potential sources of help and care; namely, the home-helpers and their own families (i.e. their spouses, adult children or other relatives). It is against this backdrop that we decided to study the understandings of dependence and independence that are upheld by Swedish home-help care recipients. This is, after all, a group of older people who has been judged to be physically dependent according to the ADL research tradition (cf. Porter, 1995) and is receiving the kind of public home-help care that is believed to be enabling them to age in place and live independently. In addition, we know, in fact, very little about how older people themselves perceive the situation of receiving help, as other researchers (e.g. Gignac, Cott & Badley, 2000) have argued. In order to understand whether dependence is automatically brought to fore once one becomes in need of help and care, and whether it is possible to think of oneself as independent if one receives help in everyday life, questions having to do with how older people in this situation regard themselves need to be addressed. For example, how do home-help care recipients view receiving help and support after having previously managed entirely on their own? This is the main question that this article will answer in order to contribute to the debate on dependence and independence with the unique perspective of home-help care recipients. At the core of our analysis is the way in which the home-help care recipients who are interviewed explain why they are receiving help and care and how they understand their situation in terms of dependence and independence. Therefore, we argue that this article could contribute to the theoretical debate on these constructs. Literature review and frame of reference As already mentioned, there are various ways of thinking about the constructs dependence and independence at the

individual level; a matter often made clear when one takes into consideration how different cultural contexts, disciplinary traditions and welfare policies and practices define dependence and independence. Consequently, the debate on dependence involves several aspects connected with how this term is conceptualized and, among others, whether dependence refers to an objective truth that can be instrumentally defined as an individual attribute or if it is, in fact, a social construction (e.g. Arber & Ginn, 1991; Baltes & Silverberg, 1994; Fine & Glendinning, 2005; Hockey & James, 1993; Kaufman 1994; Porter 1995). Another aspect of the debate has focused on the dichotomy of dependence–independence as bipolar opposites on the same dimension versus the view that dependence and independence should form a continuum (Green 1993; Hockey & James 1993), and the alternative view that the constructs of dependence and independence constitute two different dimensions (Baltes & Silverberg, 1994; Secker, Hill, Villeneau, & Parkman, 2003). All of these aspects are related to the discussion on whether there is a relationship between receiving care and dependence. Dependence is commonly defined as functional incapacity or the individual's incapacity to carry out the essential activities of daily living, that is, physical dependence (e.g. Baltes & Silverberg, 1994; Green, 1993). ADL and IADL scales are used as instrumental indicators of dependence and independence. As such, they are supposed to measure the ability to manage the variety of activities of daily living that are considered necessary for independent living (such as eating, getting dressed, bathing etc.). Accordingly, one is independent if one is able to perform the everyday activities measured by ADL and IADL scales, or if one does not receive help and support with the tasks from which the scales depart (Ball et al., 2004; Hockey & James, 1993; Kaufman, 1994; Porter, 1995). These instrumental definitions of dependence and independence have been strongly criticized because of their emphasis on intrinsic individual attributes and concomitant negative connotations associated with the label dependent. It has also been argued that attempts to measure dependence according to the ADL research tradition create and justify theoretical relationships between constructs such as functional impairment and dependence, restricting the discussion to the older persons' losses and need for service and professional intervention (Arber & Ginn, 1991; Fine & Glendinning, 2005; Hockey & James, 1993; Kaufman, 1994; Porter, 1995). Another approach is to regard dependence and independence as social constructions; i.e. as a product of social relations and a result of the interaction between older people and their social environment. According to this approach the focus should be on lived experiences and social relationships instead of individual attributes and tasks (Arber & Ginn, 1991; Baltes & Silverberg, 1994; Fine & Glendinning, 2005; Hockey & James, 1993; Horgas, Wahl & Baltes, 1998; Kaufman, 1994; Porter, 1995). Defining dependence as a social relation instead of an individual attribute suggests that there will be other people upon whom the individual could rely. Moreover, based on the assumption that power relations arise between people who have resources and those who lack them, these social relationships are assumed to rest upon the exercise of power, or paternalism, that can lead to a sense of powerlessness and lack of control among those who receive help (Ball et al., 2004; Caldock & Wenger, 1993; Fine & Glendinning,

G. Hammarström, S. Torres / Journal of Aging Studies 24 (2010) 75–87

2005; Green, 1993; Hockey & James, 1993; Walker, 1982). In contrast to this way of thinking is the understanding that help and care relationships, especially between parents and children, involves reciprocity, attachment and solidarity and thus encompassing interdependence, since the truth of the matter is that every one is dependent on others to some extent during one's life time (Baltes & Silverberg, 1994; Caldock & Wenger, 1993; Fine & Glendinning, 2005; Green, 1993; Hockey & James, 1993). Moreover, Baltes and Silverberg (1994) argue that accepting help and relying on others' support and care in old age in order to facilitate one's life, is a distinct form of a positive adaptation strategy that makes it possible to take interest in other higher valued activities (cf. Horgas et al., 1998). When turning to the construct of independence, a common definition is to be dependent upon own resources instead of relying on other people (Baltes & Silverberg, 1994; Green, 1993). Conceptualizations of independence often refer to characteristics, such as self-regulation, self-reliance, competence, and the ability or opportunity to make own choices, including control of personal time and space, but also autonomy and agency (Ball et al., 2004; Baltes & Silverberg, 1994; Caldock & Wenger, 1993; Rubinstein, Kilbridge & Nagy, 1992). In this respect it should be mentioned that autonomy is often used synonymous with independence, and the boundaries between these two constructs are vague. For example, in a study by Becker (1994) autonomy refers to an antidote to paternalism, control over decision-making and human agency free of outside intervention and interference, that is, characteristics that remind us of those mentioned above regarding independence. Mentioned earlier is that independence and dependence are usually conceptually constructed as binary dichotomies instead of a continuum on the same dimension. One of the arguments for a continuum is that the relation between dependence and independence is floating over the life course (Green, 1993; Hockey and James, 1993). Others have suggested that it would be fruitful to differentiate between being in need of help and being dependent (e.g. Baltes & Silverberg, 1994; Fine & Glendinning, 2005). Instead of seeing independence as the absence of dependence in the sense of reliance of others, Secker et al. (2003) propose a two dimensional graph that separates dependence from independence. Their view is that a person can be dependent on others' assistance but still be independent, in the sense of the individual's subjective assessments of their experiences of self-reliance, autonomy and self-actualization. In short, the conceptualizations and definitions of the constructs dependence and independence conceal a number of ontological, theoretical and methodological assumptions when it concerns old age, and consequently there is a lack of a common frame of reference concerning them (e.g. Fine & Glendinning, 2005; Hockey & James, 1993; Kaufman, 1994; Porter 1995). Departing from the discussion above we see an advantage in conceptually differentiating between receiving help and dependence on those who provide help and care. Methods Design and data The data comes from a project that aims to clarify how “cognitively healthy” elders with age-related and physical

77

impairments handle their situation now that they are in need of help and support in order to manage everyday life. The findings that will be presented hereby are based on 29 interviews with home-help care recipients, conducted during two data collection phases. The sampling strategies used in this project are a combination of convenience and criterion since the individuals interviewed needed to fulfill certain criteria in addition to being a home-help care recipient (i.e. living in their own home, being at least 75 years old, and “cognitively healthy”, that is, they have no serious memory problems caused by dementia). The informants are all native Swedes and are between the ages of 77 and 93. Eight of them are men and 21 are women (see Table 1). The vast majority of them are living alone; two (both women) are married and co-habiting, and one man is married but living alone. Most of them have adult children and grandchildren, and some have great grandchildren; seven are childless. Because physical mobility and functional limitations constitute a theme in the interviews, it seems worth to mention that 23 informants use a wheelchair or a walking frame; six individuals do not use these kinds of aids. All the informants receive both personal care and assistance with domestic tasks. Some of the informants have a low level of help and care from the home-help services (i.e. they receive help about once a weak), others have a medium level (i.e. at most they have help once a day on most days) and two have a high level (meaning everyday assistance several times a day). The interviews were semi-structured and had the character of intimate talks on how the informants perceived their everyday situation. The topic of main interest for this article is how the informants viewed the situation of receiving homehelp after previously having managed on their own. Based on earlier research we also considered if the informants perceived their physical and mental resources, as well as social resources, such as relations with children, other relatives and friends, as strategic resources that can facilitate or limit their independence and agency (cf. Arber, 2004; Arber & Ginn, 1991; Horgas et al., 1998). Thus, the interviews also concerned how the informants viewed their functional and physical capacity; the strategies they used to handle the various physical limitations they were beginning to experience; their everyday activities; and their relationships to home-helpers, their own children, other relatives, friends and neighbors. Other topics concerned how the informants perceived their aging process, and what they thought about the future. The interviews were conducted in the informants' home and varied in duration between 1 and 2 h. Analysis A great variety of responses were given by the informants with respect to how being in need for help is viewed after having managed on one's own. The informants expressed themselves along the lines of “it's natural”, “no problem”, “it's better to manage yourself”, and “it's hard to accept”. Had we stayed at that level of analysis we would have made the mistake that Silverman (2001) encourages qualitative researchers to avoid; namely treating the informants' point of view as explanations. Thus, when analyzing the data we purposefully moved away from our informants' immediate

78

G. Hammarström, S. Torres / Journal of Aging Studies 24 (2010) 75–87

Table 1 Characteristics of the informants. Informants (pseudonyms) Gender Age Living arrangements Adult children

Means of physical assistance Vision problems

Gustav* Iris* Bo* Disa* Matilda* Beata* Agnes*

M F M F F F F

86 88 86 86 93 91 91

alone alone alone alone alone alone alone

yes, yes, yes, yes, yes, yes, yes,

nearby nearby nearby nearby nearby nearby nearby

no no no walking frame walking frame walking frame no

some low (no) low some low (no) low without sight on one eye low some low (no) low

Care intensity

Rolf** Sören** Katarina** Amalia** Rebecka** Alva** Ida** Andrea** Svea** Harald** Rita** Hedvig** Britta** Eyvind** Annika** Hermine**

M M F F F F F F F M F F F M F F

86 85 78 82 82 91 91 86 – 92 84 82 77 83 84 79

alone alone alone alone co-habiting alone alone alone alone alone alone alone alone alone alone alone

yes, nearby yes, nearby no children yes, nearby yes, nearby no children no children no children yes, nearby yes, nearby no children yes, abroad yes, not nearby yes, nearby yes, nearby no children

wheel chair walking frame wheel chair walking frame wheel chair wheel chair wheel chair wheel chair wheel chair walking frame walking frame no walking frame walking frame walking frame wheel chair

(no) some (no) (no) some some (no) some almost without sight (no) almost without sight without sight (no) (no) some (no)

middle low middle middle middle middle low middle high low middle middle middle low low high

Hanna*** Irene*** Karolina*** Otto*** Ulrika*** Niklas***

F F F M F M

81 85 79 79 80 85

alone alone co-habiting alone alone alone

yes, nearby yes, nearby yes, not nearby no children yes, nearby yes, not nearby

wheel chair walking frame no walking frame walking frame walking frame

some almost without sight (no) (no) (no) some

middle middle low low low low

* = belongs to the overarching category hereby called ‘independence and agency’ (see Table 3). ** = belongs to the overarching category hereby called ‘dependence and self-determination’ (see Table 3). *** = belongs to the overarching category hereby called ‘dependence and powerlessness’ (see Table 3).

responses to specific questions in order to focus on the totality of what they said. This means that we read and reread the transcripts in order to identify other themes that had bearing on their understandings of dependence and independence besides those specifically touched upon when talking about this topic. The first step of the analysis entailed the coding of each and every one of the interviews on the basis of the variety of themes that we identified as relevant to the understandings in question. These themes proved to be about two main topics: one having to do with how the informants justified the help and care they received (see Table 2 on the why of receiving help and care) and the other having to do with how they described their situation as home-help care recipients (see Table 3 on different aspects of how the constructs of dependence and independence are understood). In Table 3 one can also see how each and every one of the interviews were coded with regards to the variety of themes that were found to be important if one is to understand how the informants think about dependence and independence; such as: acceptance of age-related physical changes, resistance to dependence on home-helpers; resistance to dependence upon one's own adult children; resistance to dependence upon relatives and friends; emphasis on self-assertiveness and integrity and/or an emphasis on mental or physical resources. Once the interviews were coded along these themes, we proceeded—in accordance to Silverman's (2001) guidelines— to identify how these themes were interrelated to one another for each and every one of the informants. This

allowed us to group the informants along the lines of the overall categories we have found which have to do with agency, self-determination, and powerlessness (which is what the *, ** and *** symbols allude to in Tables 2 and 3). This stage of the analysis entailed, in other words, exploring whether or not there were any specific patterns with regards to the overall themes we identified early on through the different coding tables (Miles & Huberman, 1994). Worth to mention is that the constructs of agency, self-determination and powerlessness did not guide the identification of themes and/or the coding of the interviews. These are constructs that we have added once we have moved from analysis to interpretation after realizing that we were dealing with three distinctive categories. The term agency, which was mentioned in the literature review section with reference to Rubinstein et al. (1992) and Becker (1994), refers to people's capability of doing things in a purposeful and intentional manner, that is, conscious behavior (e.g. Giddens, 1984). The term self-determination will be used to allude to a personally expressed desire or endeavor to maintain personal integrity and to decide upon and have control over one's own affairs, regardless of actual behavior, that is, a more “passive” form of agency. Self-determination is, however, also included as a prerequisite in agency. We have chosen to regard powerlessness more or less as opposed to agency, that is, a loss of capability for a purposeful active behavior. In order to increase the credibility of the findings we have compared and discussed our coding schedules at every stage

G. Hammarström, S. Torres / Journal of Aging Studies 24 (2010) 75–87

79

Table 2 Findings regarding the whys of receiving help and care. Informants grouped per overarching category (see * at the bottom of the table)

Accepts old age-related physical changes and the physical impairments they have caused

Talks as if physical impairments justify the care they receive

Talks as if old age old age causes the care they receive

Talks as if old age excuses the care they receive

Gustav* Iris* Bo* Disa* Matilda* Beata* Agnes*

yes yes yes yes yes yes yes

no no no no no no no

yes yes yes no no no no

no no no yes yes yes yes

Rolf** Sören** Katarina** Amalia** Rebecka** Alva** Ida** Andrea** Svea** Harald** Rita** Hedvig** Britta** Eyvind** Annika** Hermine**

partly yes partly yes yes yes yes yes partly partly yes partly yes partly partly yes

no no yes yes yes yes yes yes yes no yes yes yes yes yes yes

yes yes no no no no no no no yes no no no no no no

no no no no no no no no no no no no no no no no

Hanna*** Irene*** Karolina*** Otto*** Ulrika*** Niklas***

no no no no no no

yes yes yes yes yes yes

no no no no no no

no no no no no no

* = belongs to the overarching category hereby called ‘independence and agency’ (see Table 3). ** = belongs to the overarching category hereby called ‘dependence and self-determination’ (see Table 3). *** = belongs to the overarching category hereby ‘called dependence and powerlessness’ (see Table 3).

of the analysis, and when these have differed, we have returned to the transcripts in order to reach an inter-subjective agreement before proceeding to the next step (Creswell, 1998; Miles & Huberman, 1994).

aspect refers to how they depict themselves in terms of agency, self-determination and powerlessness.

Findings

In this section we will describe how the informants justify the help and care they receive (i.e. the why of receiving help), that is, the ‘being’ aspect of dependence. Not unexpectedly, most of the informants draw parallels between their need for help and the physical impairments from which they suffer. Some refer, however, primarily to their advanced age but in different ways. This does not mean that this latter group disregards or neglects the physical impairments and/or the health problems that abate them.

The study reveals that the informants have different ways of regarding receiving help and care on the one hand and being dependent on the other. As mentioned in the previous section, our findings deal with both a) how the informants justify the help and care they receive (i.e. the why of receiving help and care), and b) how they describe their everyday situation in general and with regards to those that provide them with the help and care that they need (i.e. the how of receiving help). One of the main findings of this study is that thinking of dependence in terms of ‘being’, ‘feeling’ and ‘acting’ is fruitful when one is dealing with home-help care recipients. Receiving help (which is related to the instrumental definition of dependence) is, after all, a given for this group which is why we reserve the ‘being’ aspect to describe the very situation (but not the experience) in which home-help care recipients find themselves. The ‘feeling’ aspect will hereby be used to describe how the informants perceive their situation in relation to their help providers, while the ‘acting’

The why of receiving help: The ‘being’ aspect

Physical impairments justify receiving help The informants who relate their help and care to their physical impairments express this as an almost self-evident assertion: It doesn't bother me. Of course one feels handicapped, but I need the help I get. (Amalia, 82 years) I can't manage by myself, I can't manage anything by myself. (Hanna, 81 years)

80

G. Hammarström, S. Torres / Journal of Aging Studies 24 (2010) 75–87

Table 3 Findings regarding different aspects of how dependence and independence are understood. Informants grouped per overarching category (see * at the bottom of the table)

Accepts old age-related physical changes and the physical impairments they have caused

Resists dependence on home-helpers

Resists dependence on children

Resists dependence on relatives/friends

Emphasizes self-assertiveness/ integrity

Emphasizes mental resources

Emphasizes physical resources

Gustav* Iris* Bo* Disa* Matilda* Beata* Agnes*

yes yes yes yes yes yes yes

no no no no no no no

no no no no no no no

no no no no no no no

no no no yes yes yes yes

yes yes yes yes yes yes no

yes yes yes yes yes yes no

Rolf** Sören** Katarina** Amalia** Rebecka** Alva** Ida** Andrea** Svea** Harald** Rita** Hedvig** Britta** Eyvind** Annika** Hermine**

partly yes partly yes yes yes yes yes partly partly yes partly yes partly partly yes

partly partly partly no yes yes yes yes yes partly partly no no no partly no

no no – no partly – – – no partly – no no no partly –

no no yes yes yes no yes yes yes no no partly no no yes yes

yes yes yes yes yes yes yes yes yes yes yes yes yes yes no no

yes yes yes no yes yes yes yes yes no no no yes no no no

no no no no no no no no no no no no no no no no

Hanna*** Irene*** Karolina*** Otto*** Ulrika*** Niklas***

no no no no no no

no no no no yes yes

no no no – yes no

no no no no yes yes

no no no no no no

no no no no no no

no no no no no no

* = categorized as belonging to the overarching category hereby called ‘independency and agency’. ** = categorized as belonging to the overarching category hereby called ‘dependence and self-determination’. *** = categorized as belonging to the overarching category hereby called ‘dependence and powerlessness’.

These excerpts indicate not only that the informants view their physical impairments as a given condition for receiving help, but also that they do not feel they have any real choice, as they otherwise would not be able to manage their daily life. Their statements express the notion that their physical impairments—even if they rather use the word “health problems”—necessitate help and care, and that these impairments make it legitimate to accept the assistance they receive (cf. Jolanki, Jylhä & Hervonen, 2000). This does not mean, however, that all of them accept their physical impairments and concomitant limitations in their daily life (a matter that we will return to later on in this article; see also Table 2, first column).

Old age justifies receiving help Informants who label themselves as old or categorize themselves in terms of old age when they justify their help express themselves in somewhat different ways and constitute two different subgroups. Some of them express an explicit connection between their chronological age and their health and seem to think that it is natural to receive help when becoming old since old age brings about health problems (cf. Torres & Hammarström, 2007). They describe receiving help as unproblematic and talk in terms of change

over time. This way of thinking is illustrated in the following excerpts: Well, I feel it's natural, yes, I think I've been around long enough anyway /…/ I sometimes think, I'm 86, that's old. (Rolf, 86 years) I feel my health is pretty good, no great problems. My feet are the worse for wear, but maybe that's not so strange at my age. I'm almost 87/…/ I think when you've reached my age, you need to be sensible enough to realize that you might not have so many years left. But you accept it of course. (Gustav, 86 years) The informants that make this type of connection refer to their chronological age with some pride, stressing at the same time that they have lived a long life, and that they see life as finite. Since they argue that one is subject to more and more physical impairments with age, and that this justifies receiving help in old age, they imply that they would not need this if they were younger and healthy. They legitimate, in other words, being in need of help and receiving this help by alluding to old age. Our interpretation is that those who view receiving help as one of those ‘givens’ that come with old age refer to their chronological

G. Hammarström, S. Torres / Journal of Aging Studies 24 (2010) 75–87

age as the cause for their deteriorating health and concomitant help and care. Among the informants who refer to their old age we found another group that do not seem to feel that it is equally natural to receive help even though also they regard their physical impairments as a natural consequence of aging: It would be more fun if you aged without so many ailments /…/ When you're this old, you have to be prepared for it [more ailments]. (Beata, 91 years) It feels hard getting old and not being able to do things yourself, when you're used to doing them /…/ but when you don't have the strength then you can't. (Disa, 86 years) These informants talk about receiving help as an unavoidable state of affairs and depict themselves as not having any real choice given their old age. But contrary to those alluded to earlier, these informants seem to feel forced to receive help (cf. Jolanki et al., 2000; Nikander, 2000), which they accept, though somewhat reluctantly. Our interpretation is, therefore, that by labeling themselves as old, these informants talk of old age as a legitimate excuse for receiving help. In common for the two groups of informants referring to old age in order to justify the help they receive is that they talk about their physical impairments as natural and unavoidable old age-related changes, which is why they accept them (see also Torres & Hammarström, 2006). This way of reasoning reminds us of the parallels that are often drawn between illness and old age (cf. Coupland & Coupland, 2004; Green, 1993; Jolanki, 2004; Jolanki et al., 2000; Torres & Hammarström, 2007, 2009). In other words, these informants regard being old and being in need of help and care as inevitable facts of life. Therefore, they regard old age as a legitimate circumstance that exempts them from having to abide to the norm of being able to manage of one's own, as being in need of help is beyond their control. The fact that the informants label themselves as old and use old age references (cf. Torres & Hammarström, 2005) as excuses or causes for receiving help means, therefore, that although these informants could be described as dependent according to an instrumental definition because they receive help and care, all of them do not automatically regard or portray themselves in this manner. Thus, they do not necessarily see the help they receive as something that renders them dependent per definition, as we will elaborate in the next section.

The how of receiving help: The ‘feeling’ and ‘acting’ aspects As mentioned in the method's section, three overall patterns were disclosed with respect to how the informants regard themselves in terms of dependence and independence, a matter that is interrelated with both their ‘feeling’ of dependence, or independence, and their capacity to ‘act’ in a purposeful and intentional manner. Aspects considered in this respect are how the informants portray themselves in relation to their help providers (irrespective of whether they

81

are home-helpers, adult children and/or other relatives and friends), their physical and mental abilities, as well as their explicit wish for self-determination and integrity (see Table 3).

Independence and agency Characteristic of those informants whose narratives we have named ‘independence and agency’ is that most of them are people who justify the help they receive by alluding to their old age. These are also people who regard their physical impairments as inevitable and natural facts of life that they accept (see Tables 2 and 3). Moreover, these informants portray their situation as one of non-dependence on help providers— both their home-helpers and their own adult children. Some of them describe their relationship to the home-helpers in relatively neutral terms and seem rather unaffected by the fact that they are now a ‘normal ingredient’ in their weekly routines. This is illustrated by the comment that one of them made when talking about them: They are very friendly people. There are many different people who come, so you don't exactly get to know them, but there's nothing to complain about. (Gustav, 86 years) Other informants make a more explicit point of arguing that they are not dependent on their home-helpers, although they need their help with certain things. They claim that they themselves decide how things are arranged in their own home (for example, to keep their rugs because “it looks cozier that way” as Agnes, 91 years old, did), and stress that they prefer to do certain things themselves, even if it is hard: Then it's so much fun if you can do things yourself /…/ it makes you feel good too /…/ I wash my clothes in the laundry room, it's rather hard, because you can't use your walking frame there, in the gravel [on the way to the laundry room] that is, but then I just have to pack a big bag that I carry in one hand and then I have my cane in the other and toddle off. I do this once every three weeks. (Disa, 86 years) Those whose narratives belong to this category can therefore be said to be people who explicitly state that they have control over their situation by alluding to concrete ways and/or strategies through which they assert their independence on the home-helpers. Besides stressing the importance of doing things themselves, these informants make a point of stating that the tasks that the home-helpers perform do not always meet the needs or the standards that they have, which may be one reason why they rather do these tasks themselves. Some of them talk also about the possibility of purchasing the services they need elsewhere and/or of asking their adult children to help them with certain tasks (cf. Hammarström & Torres, 2005). They often speak very highly of their adult children and express their gratitude to the help they get from them. For instance, Beata (91 years) talks about her daughters, “two wonderful girls,” who see her needs “before I ask for help.” However, not all of them like to “burden” their grandchildren with requests for help,

82

G. Hammarström, S. Torres / Journal of Aging Studies 24 (2010) 75–87

because—as Gustav's (86 years) says—“they have their own life”. These informants are, in other words, people who make it clear that their adult children can compensate for any perceived deficiencies in the work of the home-helpers, even if they do not use the word ‘compensate’. It must also be mentioned that the informants perceive the help they receive from their adult children as something that is given voluntarily, not by compulsion. They describe this relationship as one marked by mutual affection and reciprocity, or interdependence (cf. Baltes & Silverberg, 1994). Thus, according to our understanding, these informants portray their adult children as a resource that enables them to regard themselves as independent of the home-helpers. It is possible, however, that their depiction of independence in relation to the home-helpers instead implies dependence on their adult children, even if the informants do not view the situation in this way. The fact that they depict themselves as independent, primarily of home-helpers, can also be seen in relation to how they, later in the interview, downplay their health problems. They sometimes point out, for example, that they are still “mentally alert”, that their “hearing is pretty good” (Gustav, 86 years), or as one of them said: If it weren't for these knees I'd be fit as a fiddle /…/ I'm thankful as long as I can see /…/ You have to be thankful that your mind is clear. (Iris, 88 years) Thus, after having first indicated that it is natural to receive help because of old age and concomitant health problems, they then renegotiate the importance of their physical impairments during the course of the interview (cf. Torres & Hammarström, 2006). Their statements indicate that they also have certain physical resources that enable them, for example, to take daily walks, which they explain are good for them, even if walking is sometimes difficult: I have a walking frame so I take a little walk with it /…/ so I get to move my legs a bit /…/ You have to move your legs too, otherwise they get so weak /…/ I am doing exercise. (Matilda, 93 years) In this respect it must be pointed out that—just as found in other studies among old people who depict themselves as independent (Ball et al., 2004)—our informants express an interest in health promoting activities when describing themselves as non-dependent. Concerning activities outside the home, however, they state that they cannot manage as much as they did before and “when you don't have the strength you don't miss it in the same way you did when you really wanted to be involved” (Matilda, 93 years). Thus, although they have reduced their social activities, some of them have continued to be active in other respects allowing them to maintain a social life outside the home, for example, by visiting concerts or organizational activities. Others devote themselves to various indoor activities such as embroidery, crosswords, or jigsaw puzzles. Characteristic of these informants is that they accept their physical impairments as inevitable facts of life and stress

physical abilities that they still have and their mental resources. These circumstances might explain why they depict themselves as competent, active, self-reliant, and ‘spry’ old people, but with a certain need for help. By accepting some help to mitigate their physical impairments, they may be said to create a scope for choosing what they wish to do, which allows them to prioritize the activities that they value (cf. Horgas et al., 1998). Thus, they portray themselves as being in need for help, but not dependent on other people—a finding also observed by Hurd (1999). In other words, they regard themselves as relationally independent. In short, although it is clear that these informants do not see any alternative to receiving help, they still describe having choices in how they wish to organize their lives (cf. Rubinstein et al., 1992), and how to act in order to fulfill this wish. In other words, they regard themselves as selfreliant actors who can make their own decisions and choices, at the same time as they rely on other people's help and care. We argue therefore that they differentiate between receiving help and dependence in terms of ‘feeling’ and ‘acting’, and that this allows them to regard themselves as independent despite receiving help. In sum, the informants belonging to this category can be claimed to have achieved a balance between receiving help and maintaining their independence, self-determination, and agency. We have related their ability to maintain self-reliance, independence and agency to the fact that they depict themselves as individuals with good relationships with their adult children, who provide them with complementary help, and to the fact that they renegotiate their physical impairments and instead point to their physical mobility and mental abilities. As can be seen in Table 1, they also have low care intensity. These informants have, in other words, various strategic resources that facilitate both independence in relation to home-helpers and purposeful and intentional action. All these circumstances contribute both to the fact that they do not feel dependent, and to their capacity for being an active agent in their daily life. Dependence and self-determination Characteristic of those informants whose understandings of dependence and independence we have categorized under the heading of ‘dependence and self-determination’ is that these are informants who describe themselves, not only as dependent on help, but also as dependent upon their help providers. As this category is rather broad (look for the informants marked with the symbol ** in Tables 1 and 3), there is some variation in how these informants talk about dependence and independence. Some of them express, for example, concern about being too dependent on their homehelpers and are trying to counteract that in different ways. Others seem to accept being and feeling dependent on them but are anxious about becoming too dependent on their children, relatives or friends. Regardless of whom they are comfortable in feeling dependent upon and who they would rather remain independent from, these are informants that stress their integrity and self-reliance by talking about their wish to decide over their own situation. Those informants who express concern about feeling too dependent on their home-helpers are striving to become less dependent on them in different ways. Some of them are

G. Hammarström, S. Torres / Journal of Aging Studies 24 (2010) 75–87

trying, for example, to develop their abilities in order to be able to rely less on them in the future, while others have moved to a flat in a house without stairs, in order to avoid feeling dependent on others' help. These informants' desire to appear self-reliant is also manifested in the fact that they point out the things that they can still manage on their own and emphasize the importance of managing certain tasks by themselves: I make every effort to do as much as possible myself. … I'd rather do the dishes myself, even though I don't like it. (Rolf, 86 years) I guess I'm a bit of an individualist, so I manage on my own as much as I can. (Sören, 85 years) Some informants show an even stronger resistance against the perceived dependence on their home-helpers. For example, one of the informants declares that her need for help has led to an undesirable state of dependence on them: Awful /…/ I need the help I get, but everything happens on other people's terms, and nothing on mine /…/ but I have to resign myself to it /…/ You know, after being as busy as I was /…/ and now suddenly I have to ask for everything. And can't have it /…/ And I'd like to be involved and decide how things are arranged /…/ If you're used to being very self-reliant of course you maybe have other requirements too, you have to take that into consideration. (Alva, 91 years) Thus, the expressed resistance to feeling dependent on primarily the home-helpers seems to be connected with a perceived threat to their self-determination. Although they accept being dependent on help, they seem anxious to assert their control by trying to depict themselves as self-reliant to a certain extent and by resisting the perceived paternalism of the home-helpers which they seem to regard as an attack on their integrity: I decide [about the cleaning] because it's my home the home-helpers come to, but they're not used to people making demands /…/ I want to establish that it is my home. I am offended if others come here and point out… / …/ I've had conflicts with the care management several times. (Rebecka, 82 years) The informants in this category tend also to downplay their functional impairments and the physical limitations that these entail, despite the fact that they may require help with most things and are unable to leave their homes without assistance: I don't call myself handicapped, because I don't think I am, but of course, these legs are a handicap /…/ Now I just sit here /…/ I can't walk, can't stand up… and now I have an arm I can't use, but otherwise I'm completely healthy, completely healthy, all my values are good. (Alva, 91 years) Sure it's difficult, but I don't have any pain in my body like others who have to be in bed and take pain pills, so /…/

83

But it's no problem because I can go anywhere I want /…/ I can take a plane, take a train, and I can ride in a wheelchair /…/ And I have, but I haven't told everybody, I have unbelievably good hearing. (Rebecka, 82 years) Thus, at the same time as these informants describe themselves as physically limited, some of them renegotiate their physical impairments and stress the abilities they have. They point to their mental resources, “I have no physical strength, but I have mental strength” (Andrea, 86 years), just like those alluded to earlier who describe themselves as independent. One could therefore say that even though they see themselves as dependent on others' help, they do not seem to like the circumstances under which they feel dependent and instead call attention to the resources and abilities they have. They seem, in other words, to be trying to avoid regarding themselves as helpless and being perceived as such, even though they are relying on others' help and care. The help that these informants get from their adult children is described as taken for granted and the relationship they have with them as free of conflict (cf. Hammarström & Torres, 2005). They often also describe the help they get from adult children as being more important than the help given by the home-helpers. Some of them report, however, feeling more dependent upon their help even though they use the word ‘burden’ rather than ‘dependence’. While others of the informants do not seem to be concerned about feeling too dependent upon their adult children or their home-helpers, they still try to assert their self-determination in relation to their friends and relatives. For example, one of them paid her relatives for helping her when she moved to a new flat in order to avoid feeling dependent on their help. Katarina expresses a similar attitude toward feeling dependent on her friends: It can be better if you have somebody you don't have a relationship with, so that I hire him and he says what he wants for the work. Then you don't need to do so much thanking. (Katarina, 78 years) This excerpt shows also that some of the informants have financial resources that facilitate their capacity to make their own decisions and choices (cf. Arber, 2004; Arber & Ginn, 1991). To this respect it must be mentioned that Hockey & James (1993) have argued that financial resources—in addition to helping people maintain a feeling of independence—can also be used to hide dependence. It is possible that this aspect applies to these informants as well. In sum, characteristic of these informants' understandings of dependence is that they see themselves not only as dependent on help and care but also as dependent upon their help providers, at the same time as they are all trying to avoid losing their integrity by asserting their self-determination. In order to maintain their self-determination and self-respect, these informants are, in other words, setting up limits and upholding certain boundaries in relation to their help providers. Thus, although they accept being dependent on help under certain circumstances, those are all people who stress they still are, or want to be, in charge of their lives (cf. Aronson, 1990; Ball et al., 2004). They seem, in short, to be

84

G. Hammarström, S. Torres / Journal of Aging Studies 24 (2010) 75–87

operating on the basis of a motto that sounds something like this: I accept their assistance but they must provide it on my own terms. This motto applies primarily to the home-helpers, although they try, in different ways, to assert their selfdetermination in relation to their friends and relatives as well. Thus, although they feel dependent on others' help, they still depict themselves as self-reliant since they are actively and consciously trying to maintain their integrity and want to decide upon their own situation to the extent possible. Characteristic of these home-help care recipients' way of describing their situation is that they stress the mental resources they have, that enable them to strive for maintaining their integrity and self-determination. They could be said to renegotiate their dependence on their home-helpers by asserting their self-determination and by making sure that we are aware of the strategic resources that they still have (cf. Arber & Ginn, 1991). Portraying themselves as mentally strong individuals striving for integrity and self-reliance seems to help them in negotiating their perceived dependence upon their home-helpers which helps them, in turn, to reach a balance in their situation. This group highlights the connection between receiving help and relational dependence mentioned earlier, that is, between the earlier mentioned ‘being’ and ‘feeling’ aspects of dependence. Analytically, we have related their outlook to the fact that they feel physically limited, which they accept mostly, at the same time as they emphasize their psychological strength and mental abilities. It is also worth mentioning that these informants are more physically limited and less mobile than those categorized under the heading of ‘independence and agency’ (as can be seen in Table 1), and in their choice of strategies for maintaining self-determination and integrity they are reduced to verbal statements and indoor activities. In other words, they are trying to exercise a certain level of decisional autonomy rather than being active agents—a finding also seen in disability research (cf. Fine & Glendinning, 2005).

Dependence and powerlessness Characteristic of those informants whose descriptions of their situation we have categorized as statements of ‘dependence and powerlessness’ is that they describe themselves not only as dependent on help and care—regarded as a necessity because of their physical impairments—but also as dependent on those providing this help. These informants are people who report being affected by sudden physical decline and health problems that they have not gotten used to—in addition to having had earlier physical impairments. The following excerpt alludes to such a situation: There's a great difference now /…/ I have a hard time accepting it, I have a hard time accepting it. (Hanna, 81 years) They feel their entire life situation has changed, since they see no possibility of improvement, and they express difficulties in accepting the consequences of their functional impairments. They talk about how difficult it is to get outside their home without help and their feelings of being imprisoned in their homes. In connection with this, they complain about not receiving enough help from the home-

helpers. This latter aspect emerges through statements indicating that they don't get the help that's been decided /…/ the homehelpers don't come at the scheduled times /…/ it's too bad they have so much to do, that they don't have time. (Hanna, 81 years) Some of them do not only express frustration about having to be dependent on home-helpers, whose help is perceived as unreliable and unsatisfactory, but also about feeling forced to thank them for the help they provide: Always having to feel dependent on others, it's horrible, horrible /…/ I pay for this help, I shouldn't have to stand here and say ‘Thank you very much for the help.’ Thanks for this and for that, but I do it out of common courtesy. (Ulrika, 80 years) In contrast to Beata (in the section on ‘independence and agency’) who expresses a gratitude to her daughters and their help, this informant seems compelled to be thankful for the formal help she has the right to get according to prevailing legislation. Her way of expressing herself can be interpreted as a perceived demand for counter-performance, that is, that the help provided must be paid back in thankfulness and submissiveness. Thus, the two excerpts above express a feeling of having a weak position in relation to the home-helpers and point to the unbalanced power relation that exists between them (see Fine & Glendinning, 2005; Green, 1993; Hockey & James, 1993; Walker, 1982). The negative attitude toward feeling dependent on the help of others is also illustrated by the fact that some of them miss “the independence, being able to do what I want” (Ulrika, 80 years), which also can be seen in light of their descriptions of how life used to be when they were still very active and self-reliant. Thus, the way in which these informants talk about their home-helpers imply an unwanted feeling of dependence on them. Characteristic of these informants’ narratives is also the fact that they seem to lack other people who can provide support and compensate for the help that they feel they need, but that is not provided by the home-helpers. The informants in this category who have adult children provide legitimate excuses on behalf of them, who are said to live too far away or be too busy with their work (cf. Spitze & Gallant, 2004). These excuses are expressed in a way that suggests that the informants wish they had their support. Some of them also talk about their adult children as ones who find it difficult to understand their situation and who are relatively unwilling to provide help which is illustrated by statements such as “they don't take any responsibility for me really” (Hanna, 81 years). Another woman makes a point of saying that she does not wish to ask her adult children and grandchildren for help since such help should be given spontaneously, even though this does not seem to happen (cf. Hammarström & Torres, 2005). Her standpoint implies that she does not want to feel dependent on them. It is, in other words, easy to detect a certain amount of dissatisfaction with the way things are in some cases.

G. Hammarström, S. Torres / Journal of Aging Studies 24 (2010) 75–87

The specific powerlessness that is characteristic of how these informants seem to perceive their life situation is expressed also when they describe themselves as victims of diseases—that have led to reduced mobility. Their situation seems to contribute to the near disappearance of contacts outside the home and social relationships with others and causes them to feel like prisoners in their own home. The existence of multiple and severe health problems and the experiences of a diminished spatial life limit, in other words, their choices (cf. Becker, 1994; Rubinstein et al., 1992). It seems as if the way in which they handle their situation—or the lack of a strategy for the handling of it—can augment their spatial limitations. These informants depict themselves, in other words, not only as dependent on the help and care they receive, but also as feeling dependent on their home-helpers without feeling the satisfaction of having their needs met. For this group of informants it seems as if the home-help system whose aim is to maintain independent living and autonomy, is accomplishing just the opposite since the help received is perceived as both unreliable and insufficient. Instead, they seem to have become overwhelmed by a feeling of powerlessness related to an unbalanced power relation to their home-helpers that seems to bring about feelings of negative dependence and a loss of self-determination, which seems, in turn, to lead to a reduction of agency and powerlessness (cf. Ball et al., 2004; Gergen & Gergen, 2000). Analytically speaking, we have related their expressed connection between receiving help and their perceived negative dependence on the homehelpers to the fact that they accept neither their physical impairments nor the concomitant spatial limitations that comes with them, such as their feelings of imprisonment together with their experience that their home-help is both unreliable and insufficient. Discussion The findings reveal variation in the approaches that homehelp care recipients have toward receiving help and disclose the variety of understandings of dependence and independence that can be uphold under this circumstance. As our analysis has shown, it is possible, in some cases, to make a clear distinction between receiving help and feeling dependent, as well as between being a home-help recipient and having capability for being an active agent. We have therefore argued for differentiating between ‘being’, ‘feeling’ and ‘acting’ aspects of dependence. The ‘feeling’ aspect has been discussed with regards to the help providers, primarily the home-helpers, since this was how our informants seem to reason in this respect. Thus, in this study, dependence has been found to be regarded as a social relationship rather than an individual attribute. The ‘acting’ aspect refers to how the informants depict themselves in terms of agency, selfdetermination and powerlessness. The study has shown that receiving formal assistance— and thereby being defined as dependent according to an instrumental definition (the ‘being’ aspect of dependence)— does not automatically bring about the perception that one is dependent upon those that provide the help (the ‘feeling’ aspect). The findings suggest also that receiving help, or ‘being’ dependent, does not necessarily bring about a loss of

85

capability for agency, or a feeling of powerlessness with which the ‘acting’ dimension is associated. We have therefore argued that old people who receive home-help services need not necessarily feel and act dependent. The relationships between receiving help and dependence, or independence, and between receiving help and powerlessness, self-determination, and agency are, in other words, far more complex than the debate on dependence and independence sometimes suggests since there are other factors that determine whether or not receiving help brings about the feeling of dependence and loss of capability for being an active agent. In short, this study shows that one thing is one's situation (i.e. whether or not one receives help and can, according to an instrumental definition, be regarded as ‘being’ dependent) and another is how one perceives that situation to be (i.e. whether that leads to feeling dependent on help providers and a reduction or loss of capability for being an active agent). To this respect it must be re-iterated that deeming the home-help received as insufficient and unreliable help can, in fact, bring about the feeling of dependence and, as found hereby, powerlessness and a reduction of agency. People have, in short, not only different needs but also different experiences related to how limiting or facilitating the home-help services received are deemed to be. This suggests, in other words, that home-help care recipients' access and ability to regard other assets as resources, such as, for example, one's own adult children or remaining mental abilities, etc., play also a role in their ability to feel and act independent despite receiving help. This study has therefore brought to fore some of the factors that seem to play a role when it comes to how homehelp care recipients regard dependence. These are: • whether or not they feel that they have a sufficient and reliable home-help support • whether or not they have adult children or another social network on which they can count on complementary help and care • the way in which the home-help care recipients perceive their physical impairments and spatial limitations, that is, whether they accept them or not, and the importance that they accord to physical mobility • whether or not they recognize their mental capacities as assets • their ability to recognize any other strategic resources that they might have at their disposal (such as, for example, financial security) As has been shown, we have identified three distinctive patterns with regards to how receiving help and care is perceived: ‘independence and agency’; ‘dependence and selfdetermination’ and ‘dependence and powerlessness’. All these constructs open up for the question of whether or not there are other theoretically possible combinations, such as, for example, ‘independence and self-determination’ or ‘dependence and agency’. The empirical evidence collected in this study did not attest to these combinations but this should not be taken to mean that these are not plausible. For example, it is not hard to imagine that some home-help care recipients could ‘feel’ dependent upon their home-help providers and yet enact their agency in other spheres of life. We would, however, argue that the combination of

86

G. Hammarström, S. Torres / Journal of Aging Studies 24 (2010) 75–87

‘independence and powerlessness’ is both theoretically and empirically improbable. We would also like to stress that our findings should not be treated as stages over time, even if it is plausible that single individuals could move across the categories if and when the circumstances change. With regard to what we mentioned in the introduction regarding the fact that Swedish elderly care policy is not only intended to contribute to older people's independence and autonomy, but also to relieve their families from care responsibilities, it seems that the goal of aging in place presupposes complementary help from family or others. Having adult children upon one could rely seems, in other words, to increase the chances that home-help care recipients can avoid feeling dependent upon their home-helpers. The opposite is also the case since having reliable home-helpers seems to augment the feeling that one is independent on help from one's adult children. Cut-backs in home-help services can, therefore, create dependence on adult children and other relatives, even though the informants describe their relationship with their own children as reciprocal, by portraying adult children as a resource that enables them to feel less dependent on the home-helpers. Our findings show also that being able to count on one's adult children can sometimes facilitate homehelp care recipients in asserting their self-determination in relation to home-helpers and to maintain their capability for agency. To a certain extent it seems as if having reliable adult children that offer complementary help and care can sometimes help home-help care recipients fence themselves off against the power or paternalism that home-helpers can sometimes be perceived as wanting to exercise over the lives of the older people they serve. Those who do not have adult children that want to or can offer this kind of complementary help seem, in turn, to risk perceiving the help they receive from home-help services as insufficient and unreliable which can bring about the feeling of dependence and powerlessness that Swedish elderly care policy wants to avoid. Our findings suggest therefore that functioning and reliable social networks of affiliations are important if home-help care recipients are to uphold their self-determination and feel independent. This means, in turn, that home-help care services need to take special consideration of those home-help care recipients who do not have adult children and those who feel that they cannot count on their adult children for help, irrespective of why this may be the cause. The findings suggest also that much could be gained if home-help care services were to involve the social networks of the older people who they serve in a more active way. Concerning the goal of aging in place that is at the core of Swedish elderly care policy and the kind of independent living with which this goal is associated, our findings also suggest that home-help services can indeed augment some home-help care recipients' possibilities to take an interest in other activities contributing to higher life satisfaction or wellbeing (cf. Horgas et al., 1998). This is the case especially when the older people receiving the help are relatively mobile, have mental abilities that they regard as resources and have complementary help from their adult children, relatives and/ or friends. Thus, home-help care services do in fact, in some cases, enable the kind of independent living that the goal of aging in place is all about and the sense of independence and agency in old age with which this goal is associated.

Finally it must be mentioned that it is definitely plausible that Western norms of self-reliance and self-determination could have played a role for those home-help care recipients who seem to want to portray themselves as independent, self-reliant or powerless people (cf. Aronson, 1990; Becker, 1994; Hockey & James, 1993; Kaufman, 1994; Rubinstein et al., 1992). Reducing the findings hereby presented to this very fact would, however, be a mistake since this would be the same as reducing this study's contribution to the sphere of the how of receiving help and care. As shown in the beginning of the previous section, this study has also tapped into the why of receiving help and care and the results in that respect clearly show that the informants—regardless of whether they justify their help by alluding to physical impairments or to old age itself—at the same time do not abide by that rule, since they clearly express that receiving help and care is a given in old age and that is inevitable and out of their personal control. In short, the informants interviewed in this study seem to have thought of old age as the time when one is allowed—so to speak—to break the self-sufficiency norm. Therefore, it would be erroneous to reduce the importance of differentiating between ‘being’, ‘feeling’ and ‘acting’ dependent to being something which is only applicable to those home-help care recipients who live in value systems that consider selfsufficiency and self-determination to be desirable. Future research should, therefore, explore the importance of value systems on how home-help care recipients perceive their situation. The same can be said with regards to the theoretical combinations which this study mentioned earlier since future research should explore this further. Our contribution lies in the fact that we have explored the issue of dependence and independence from the perspective of a group of older people who receive formal home-help care and have, on the basis of the understandings of dependence and independence that they uphold, suggested that it might be fruitful to differentiate between ‘being’, ‘feeling’ and ‘acting’ dependent. This seems relevant when wanting to understand how older people who receive formal help and care services can regard themselves and/or ‘act’ independent even though they ‘are’ dependent according to instrumental definitions and might ‘feel’ dependent under certain circumstances. Acknowledgements This research project was funded through grants from the Swedish Research Council (Vetenskapsrådet) and the Faculty of Social Sciences at Uppsala University. The authors would also like to extend their gratitude to the members of the Social Gerontology Research Group at the Department of Sociology of Uppsala University for their feedback on an earlier version of this manuscript. References Arber, S. (2004). Gender, marital status, and ageing: Linking material, health and social resources. Journal of Aging Studies, 18, 91−108. Arber, S., & Ginn, J. (1991). Gender and later life: A sociological analysis of resources and constraints London: Sage Publ. Ltd. Aronson, J. (1990). Old women's experiences of needing care: Choice or compulsion? Canadian Journal on Aging, 9, 234−247. Ball, M. M., Perkins, M. M., Whittington, F. J., Hollingsworth, C., King, S. V., & Combs, B. L. (2004). Independence in assisted living. Journal of Aging Studies, 18, 467−483.

G. Hammarström, S. Torres / Journal of Aging Studies 24 (2010) 75–87 Baltes, M. M., & Silverberg, S. B. (1994). The dynamics between dependency and autonomy: Illustrations across the life span. In D. L. Featherman, R. M. Lerner, & M. Perlmutter (Eds.), Development and behaviour (pp. 41−90). New Jersey: Lawrence Erlbaum Ass. Becker, G. (1994). The oldest old: Autonomy in the face of frailty. Journal of Aging Studies, 8, 59−76. Caldock, K., & Wenger, G. C. (1993). Sociological aspects of health, dependence and disability. Reviews in Clinical Gerontology, 3, 85−96. Coupland, J., & Coupland, N. (2004). Old age doesn't come alone”: Discursive representations of health-in-aging in geriatric medicine. International Journal of Aging and Human Development, 39, 81−95. Creswell, J. W. (1998). Qualitative inquiry and research design: Choosing among five traditions. London: Sage Publ. Daatland, S. O. (1998). Äldreforskning och socialpolitik: Dominerande paradigm och kritiska alternativ (Aging research and social policy: Dominating paradigms and critical alternatives). In R. Eliasson-Lappalainen & M. Szebehely (Eds.), Vad förgår och vad består? (What preceeds and what remains?) Lund: Arkiv. Estes, C. -L., Swan, J. H., & Gerard, L. E. (1982). Dominant and competing paradigms in gerontology: Towards a political economy of ageing. Ageing and Society, 2, 151−164. Fine, M., & Glendinning, C. (2005). Dependence, independence or interdependence? Revisiting the concepts of ‘care’ and ‘dependence’. Ageing & Society, 25, 601−621. Gergen, K. J., & Gergen, M. M. (2000). The new aging: Self constructions and social values. In K. W. Schaie & J. Hendricks (Eds.), The evolution of the aging self: The societal impact on the aging process New York: Springer Publ. Comp., Inc. Giddens, A. (1984). The construction of society: Outline of the theory of structuration. Berkerly & Los Angeles: University of California Press. Gignac, M. A. M., Cott, C., & Badley, E. M. (2000). Adaptation to chronic illness and disability and its relationships to perceptions of independence and dependence. Journal of Gerontology: Psychological Sciences, 55B, P362−P372. Government Bill 1987/88:176, Äldreomsorgen inför 90-talet (Elderly care for the 1990s). Government Bill 1997/98:113, Nationell handlingsplan för äldrepolitiken (National plan of action for the care of elderly people). Green, B. S. (1993). Gerontology and the construction of old age: A study of discourse analysis. New York: Aldine de Gruyter. Hammarström, G. (2006). “Det är ständiga bekymmer man har med anhöriga”: Ambivalens gentemot äldres barn bland personal i kommunal äldreomsorg. (“There are always troubles with the relatives”: Ambivalence towards old people's children among staff in the home help care organization.). Gerontologia, 3, 130−137. Hammarström, G., & Torres, S. (2005). Livssituation och förhållningssätt bland äldre i behov av hjälp och stöd. (Life situation and approach to everyday life: A study of elders in need of help and support). Socialvetenskaplig tidskrift, 12, 279−293. Hockey, J., & James, A. (1993). Growing up and growing old: Ageing and dependence in the life course. London: Sage Publ. Ltd. Horgas, A. L., Wahl, H. W., & Baltes, M. M. (1998). Dependence in late life. In L. L. Carstensen, B. A. Edelstein, & L. Durnbrand (Eds.), The practical handbook of clinical gerontology (pp. 54−75). Sage.

87

Hurd, L. C. (1999). ‘We're not old!’ Older women's negotiation of aging and oldness. Journal of Aging Studies, 13, 419−439. Jolanki, O. (2004). Moral argumentation in talk about health and old age. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 8, 483−503. Jolanki, O., Jylhä, M., & Hervonen, A. (2000). Old age as a choice and as necessity: Two interpretative repertoires. Journal of Aging Studies, 14, 359−372. Kaufman, S. R. (1994). The social construction of frailty: An anthropological perspective. Journal of Aging Studies, 8, 45−58. Miles, M., & Huberman, A. (1994). Qualitative data analysis. Thousand Oaks, Ca: Sage Publ. Nikander, P. (2000). “Old” versus “little girl”: A discursive approach to age categorization and morality. Journal of Aging Studies, 14, 335−358. Porter, E. J. (1995). A phenomenological alternative to the ‘ADL research tradition’. Journal of Aging and Health, 7, 24−45. Rauch, D. (2007). Is there really a Scandinavian social service model? A comparison of childcare and elderly care in six European countries. Acta Sociologica, 50, 249−269. Rubinstein, R. L., Kilbridge, J. C., & Nagy, S. (1992). Elders living alone: Frailty and the perception of choice New Brunswick: Aldine Transaction. Secker, J., Hill, R., Villeneau, L., & Parkman, S. (2003). Promoting independence: But promoting what and how? Ageing & Society, 23, 375−391. Silverman, D. (2001). Interpreting qualitative data: Methods for analysing talk, text and interaction, 2nd ed. London: Sage. Spitze, G., & Gallant, M. P. (2004). “The bitter with the sweet”: Older adults's strategies for handling ambivalence in relations with their adult children. Research on Aging, 26, 387−412. Szebehely, M. (1998). Changing division of care work: Caring for childhood and frail elderly people in Sweden. In J. Lewis (Ed.), Gender, social care and welfare state restructuring in Europe Ashgate: Aldershot. Torres, S. & Hammarström, G. (2005). ‘Old age references as discursive strategies’ (Paper presented at the 58th Annual Scientific Meeting of the Gerontological Society of America, November 18–22 in Orlando, Florida). Torres, S., & Hammarström, G. (2006). Speaking of limitations while disregarding them: A qualitative study of diminished everyday competence in the oldest old. Journal of Aging Studies, 20, 291−302. Torres, S., & Hammarström, G. (2007). Hög ålder som ohälsa och hot: Äldre människors erfarenheter (Old age as disease and threat: Elderly people's experiences). In L. -E. Jönson & S. Lundin (Eds.), Åldrandets betydelser (The meanings of aging) Lund: Studentlitteratur. Torres, S., & Hammarström, G. (2009). Successful aging as an oxymoron: Older people – with and without home-help care – talk about what aging well means to them. International Journal of Aging and Later Life, 4. Townsend, P. (1981). The structured dependence on the elderly: A creation of social policy in the twentieth century. Ageing and Society, 1, 5−28. Townsend, P. (2006). Policies for the aged in the 21st century: more ‘structured dependence’ or the realisation of human rights? Ageing & Society, 26, 161−179. Trydegård, G. (2000). Tradition, change and variation: Past and present trends in public old-age care. Department of Social Work: Diss. Stockholm University. Walker, A. (1981). Towards a political economy of old age. Ageing and Society, 1, 74−94. Walker, A. (1982). Dependence and old age. Social Policy and Administration, 16, 115−135.