Participants reported different dimensions of informal support. Informal support can be understood as that type of support that occurs outside of health service interfaces. While there are ways that participants discussed solicited support--that is by directly or indirectly asking for help in some way--our concern in what follows is in tracing participants' representations of unsolicited informal support. Unsolicited support, then, is not directly or explicitly sought by participants. It includes instances of experiencing encouragement and practical suggestions for managing, but is not necessarily limited to these things. It also includes experiences of 'nagging', 'growling', and 'surveillance'. It is important to signal here that people may not always automatically assist a chronically ill person of their own accord, nor will people with chronic illness necessarily believe that such support will be provided.
Although the findings presented below are drawn from Indigenous participants, and in this sense some of them carry cultural inflections unique to that setting, many of the experiences are not necessarily particular to the fact of indigeneity [see for example [14]].
Unsolicited psychological support: complexities of the 'yarn'
In discussions of receiving peer support there was an emphasis on the value of getting together and having a 'yarn', of talking about things; often with others who have experience of living with chronic illness. The value of the 'yarn' is something that is saturated with ideas about having a laugh, of getting together and feeling like everything is alright. In addition, certain spaces such as friend's houses and AMS waiting rooms were articulated as being naturally conducive to 'yarning' and can thus be interpreted as 'yarn' spaces. One participant with DM and CHF who regularly met with a friend who also had DM put it this way: "I go up to my mate's place, and you know, have a yarn about this and [that] ... and ah have a bit of a laugh about it, you know? Everything's right, you know? Back to normal" (Participant_A). In this way the value of the 'yarn' is framed in terms of its ability to put the person with chronic illness at ease, to relax them. Another participant accented it differently in response to how he thought being Aboriginal helped him manage his conditions:
"I couldn't say for sure ... but, we share a lot. You know when we meet people we talk about things. It's like when you go in to a medical centre, you as a whiter person, you might be lucky if somebody says hello to you. If we go in and I know someone we'll have a good yarn. How you going with yours? You got diabetes yeah. How many tablets are you on? I'm on the needle. "Why? How high does yours get?" So there's always that yarn that we can pass on that information, "What do you do about it?" and all this stuff, and I think sharing a lot of the things that we do that's the difference because we're so small in numbers even though we've got the largest population in the country in this area I think we can walk in anywhere and we always get a "G'day" and a yarn. And not only that, if you're a bit nervous then it calms you down, a lot of us so there's a lot of aspects I suppose we think on a cultural basis." (Participant_B)
The emphasis on sharing through 'yarning' has important contextual threads. There is, for example, its deployment in responses around marking something unique in Aboriginal and Torres Strait Islander peoples' styles of relationship. Beyond this, it is deployed as a way of mitigating fear or anxiety as a component of the lived experience of chronic illness. But there is a further contextual complication here, for while 'yarning' with peers or family provides a form of informal psychological support, the wider realities of being surrounded by others who are sick can be anxiety producing in and of itself. The following participant draws awareness to the tension in this way:
"Sometimes, you get someone to talk to, you've always got someone to talk to, you know you run into someone you've got relatives over here and friends over here, people have been through it you've known for years, and you think oh geez I'm going to go that way, I know a woman that's had it she's had 3 or 4 heart attacks, 3 or 4 operations you know and she's on a dialysis there and I'm thinking you know I wonder if I'm going to be on that thing one day, you know. So there is people that are around that you see around that have more or less got the same thing, the same problem. Yeah you just talk to them see how they cope with it and then you try and cope with it as best you can." (Participant_C).
So while the value of community, family and 'yarning' is a significant source of support and knowledge, it is also significant for the fact that it drives some forms of ambivalence in experiences of chronic illness.
Unsolicited practical support
In addition to what we have framed as unsolicited psychological support, participants also conveyed instances of unsolicited practical support. One such case of unsolicited practical support comes in response to the question of what kind of role, if any, a participant's family played in providing support. He commented:
"Well yes. in a way you know. There's been times where they've given support like driving or maybe some dosh for some extra expenses or if I run out of food for the fortnight and they might help, I don't have to ask, they come and have a look and first thing you know kids do whether they're grown up or not, they open the fridge they say, 'Oh well we'll go down and get you a few of these.' I say 'Ooh.' When you get there they say, 'Well what else do you want?' I never say, this, this and this. 'Come on you must need something' so. But they're quite good in that way, support today" (Participant_B).
This case has several interesting dimensions. Earlier in his interview the participant placed a great emphasis on not getting his family involved directly in the management of his condition, stating that his independence in this regard was important to him. That is, he was not given to overtly soliciting support from his children. Nevertheless, the family provided him unsolicited practical support by opening the fridge and assessing its contents, something they used to do as young children to take food out. In an inversion of this history they go to the fridge to see what needs to be 'put in', mobilising a shared memory of provision and family life in the process. There are two consequences of this, the first is that by trading on this memory they are able to offer support in a way that does not impinge on their father's sense of independence. The second is that the support is normalised through the choice of deployment around notions of reciprocal care spanning the life-cycle and processes of daily family living.
Unsolicited psychological and practical support
At times unsolicited psychological and practical support provided by family, friends and the community was combined. A man in his thirties with DM described his experience of binge drinking in response to his diagnosis of DM. In the following example he draws attention to his response to a friend's suggestion that his binge drinking was out of control;"And it was like; this has come from a heavy drinking Cook Islander. And I went, 'what do you mean mate'? He said 'well, look,' he says, 'I know we come down here, but you're not the same person'. You know? And that was when I decided to get help" (Participant_D). This comment on his alcohol-related change in personality is a kind of support that is more subtle than just being either psychological or practical. Instead, the drawing of his attention to the binge drinking caused what can be termed a 'reflexive turn' in the participant, one that ultimately ended in his seeking help.
Responses to support
Acts of unsolicited support were often expressed in terms of gratitude for having access to support and encouragement from family, "if you haven't got family", one participant remarked, "I don't know how the damn hell they do it" (Participant_B). However, there were also expressions of ambivalence toward 'messages' conveyed through support, especially when they presented in the form of nagging, growling and surveillance. For example, a participant said "my nieces and that they all have a growl at me" (Participant_E). When asked how her family helped with her diabetes another participant responded, "Well just by nagging me, and saying to me all the time... 'you shouldn't be having that Mum' or 'should you be having that?'. Yeah so ... Mary she's the worst one" (Participant_F). There are hints from this same participant that this form of support does not mitigate the personal difficulties of managing a condition, serving rather to foster feelings of ambivalence:
"I mean I love to have a drink of Coke occasionally you know, and Lucy says to me 'Mum, you could, try the... try the Zero' .... So I thought oh and I bought a bottle and she said 'I'm really proud of you Mum' she said 'that you've bought that' she said 'have that instead of...' I said 'yeah I know but...' so I don't know it is difficult." (Participant_F).
The ambivalence surfacing around difficulty centres on a particular tension. This tension arises in the interstices of wanting positive reinforcement from family and understanding that the family cares, juxtaposed against feeling a disruption to her biography [28] through being thwarted insofar as she cannot engage freely in a lifestyle she might choose for herself:
"You know I'll always think 'oh well what's the... what's the difference' you know, might as well die happy as... I'm happy, struggling but... yeah. And it's the wrong attitude I'm afraid to have because I... because my girls said 'what about your grandkids?' That's what they say to me." (Participant_F).
What also comes out quite strongly in this example is the way that the 'nagging' as a form of unsolicited support references social surveillance and trades on perpetrating a sense of guilt. While this is deployed around notions of the participant being important to the grandchildren and family, and in this sense can be read as connecting to notions of a caring family, it also draws on notions of responsibility. The responsibility in this regard is a responsibility to live healthily, and by extension to live for the family. This notion negates the idea that the death of grandparents is something that is normal as part of the life course. Similarly, as part of the construction of living with chronic illness, it makes the chronically ill person directly responsible for staying alive, rather than this being something that is out of their control. It is not just a matter of how to live, but rather of how long to live, even at the expense of sacrificing some personal happiness.
The carer perspective
A woman who cared for her partner with DM reported trading on notions of responsibility in a different way. She attempted to provide unsolicited support for him by using a sign language that was common between them but could be hidden from others. When he ate food with other members of the community that she knew would make him feel unwell she would "give him the look, that serious look of 'that's enough'" (Participant_G). This approach was met with limited success in that its hidden or silent nature meant it could be easily ignored. She went on to say:
"So it's quite emotionally exhausting for me when I sit there and I watch it and I know that later he's going to suffer, it's really quite tiring. And how do I... I need to be respectful of culture and his ways but at the same time I can't afford to have a man who's sick. So then generally when people leave within the hour we've got the BSL, we've got the glucometer out and we've got the blood sugar thing happening... So it's very tiring" (Participant_G).
In reports of support from our three carer participants, it was often impossible to gauge whether the support was explicitly solicited or otherwise, but for the most part their reports seemed to stem from a common understanding between their care recipient and themselves that support would be provided (although this may not have been voiced), even when they did not know exactly how to provide support. A woman who cared for her husband described an instance where she provided support that she first framed as helping the nurses and then added that in doing so provided unsolicited support for her husband:
"you do do that, you just go ahead and you say 'Look, I'll shower him while I'm here' and I think that the nurses really appreciate that too, because sometimes they say, 'Oh no, it's alright, we'll get there' and I'll say 'No, I'm here, I'll do him' and you know, that was okay, and give him his clothes to make him feel a bit better, because it's such a long time when they're so sick" (Participant_H).
She also described her experience of not feeling confident in her knowledge to help manage his home dialysis; "I really didn't know what I was doing actually, to tell you the truth. And I used to have to just sort of gauge everything and be, 'oh, I hope I'm doing it right', you know" (Participant_H). In describing her overall experience of caring for her husband she signalled the exhausting and demanding nature of undertaking a heavy load of caring responsibilities; however, she asserted that taking any kind of break from providing the increasing home care needs of her husband was something she would not do despite her exhaustion; "you couldn't do that, because when you've got someone who is so ill and you know that they need you, you can't. You just can't go and have that break" (Participant_H).