The article I will review in this blog has a neat title – ‘add info and stir’ which conveys the gist of it: that information for family carers is not just a simple matter of giving it to them or telling carers where they can find it. The focus is on carers of older people living with dementia and although the author is writing from a Canadian perspective it seems readily applicable to the UK. Nicole Dalmer (2018) comments that the work involved in getting information on behalf of the person you are caring for can be complicated and ‘invisible’ to others. You have to find, understand, interpret and apply the information at the very least. She observes that studies often report that carers are frustrated in their search for information and yet increasingly told that they need information to make the right choices about care. At a time when people are often seen as customers in health and care settings, the importance of carers making choices on the basis of information can get overlooked in policy and by the workforce.
This article draws on a scoping review, which means that the author searched various research databases on the issue. There is a well-travelled route-map for carrying out scoping reviews nowadays, making them the method of choice for many researchers who know that the evidence from research is often limited. Carrying out a scoping review is a way of finding gaps in the evidence and this can be an important finding in itself. Dalmer also used an approach called ‘institutional ethnography’ to look at carers’ efforts in finding and using information in the wider context of the broader institutions (policy, professionals), which might be invisibly co-ordinating this everyday work. Dalmer’s analysis therefore looked at:
- what remains unsaid or overlooked in research;
- how research values lived experiences (in this case, the carers’) and emphasizes the invisible forms of work (looking up information is a largely done in private); and finally,
- the authors’ (of the research) standpoint or ‘position’. Dalmer further asks questions about how academics’ research might shape general understanding of how family carers seek and use information.
Dalmer’s review located 72 articles about information use by carers of older people living with dementia, who are living at home. The search terms she used (when running through the databases) were: older adult; dementia; family care-giver; ageing in place; and information. Like many reviewers, she sets out a standard flow chart of how she refined or whittled down the articles she initially found (numbering 2,043) into the ones that met her purpose, ending with the more manageable 72 articles that are discussed. In this review it was particularly important to look carefully at the content of articles that mentioned the word ‘information’ since this could cover a wide range of topics.
Dalmer categorized the articles she found into three main areas:
- carers’ information practices (nearly half);
- their desires or appeals for information; and
- changes or experiments to improve information delivery.
Interestingly, the journals where articles on information for family carers of people living with dementia were most often found, were medical – or in the psychogeriatric field. More and more articles are being published on the subject each year. Most were from the United States (US), followed by the UK (Dalmer only searched for articles in English or French). She does not mention that any came from social care researchers – although 11% were from social science researchers.
Dalmer found much variation in what was actually meant by ‘information’ – with many other terms used such as advice, training, knowledge, and so on. Dalmer refers to this as a ‘tangle of terms and labels’. Mostly these subjects were viewed entirely benevolently – they were all ‘good things’ and if carers did not have information then this was a problem. However, sometimes information was talked about generally, such as the dementia diagnosis, while in other studies it was about specific topics such as legal issues, food, or behavioural change. Almost always, the carers included in these studies indicated that other people were important in getting information and discussing it; and several raised the matter of having information at the right time for them. Interestingly, studies did not seem to look at how people kept, managed or stored information.
Dalmer makes three main concluding points. Firstly, that the term ‘information’ is used pretty unevenly and means several different things. Researchers should be more careful about clarifying what they mean. Secondly, researchers overlook information work or take a very simplistic view of it. They overlook what you are actually meant to do with information; this means that they are not getting very far in thinking about what needs to change. Thirdly, there is a tendency ‘to conflate information with being informed’. This means that they neglect the work or effort necessary to becoming informed. Indeed, it was UK researchers who formed the notion of the ‘informatisation of care’ (Barnes and Henwood 2015), meaning that care gets marginalised and even replaced by information. Research I carried out with colleagues on this subject found that carers’ efforts to get relevant information could be made more difficult by being sent on an information ‘merry go round’ when they get passed from agency to agency (Samsi, Manthorpe & Rapaport 2011).
Strengths and limitations
This is an interesting article about a subject that we often take for granted. We can all be a bit too casual, I think, in saying that carers need information without thinking what this means and about the work involved. We probably all overlook what carers actually do with information when they have it. From being on the receiving end of information I am likely not to be alone in wondering what to do when information seems to suggest one thing and another bit of information suggests the opposite. Dalmer notes that researchers rarely consider such points. The scoping review method adopted in this present study has revealed the many studies on this subject. The ethnographic approach to analysis provided a way to set their findings in context and to look at them critically. Thinking about ‘information work’ as applied to family carers is a new way of seeing their worlds. Dalmer also makes the excellent point that information is rarely just ‘given’ to passive receivers but is always mediated and moderated.
Implications for practice
For practice, just the opportunity to think about information use might result from reading Dalmer’s article. What do people do with the information they are offered; is this something that they access or think about in private or do they have the chance to talk about what the information means to them and their circumstances? When providing information, how do professionals or volunteers know that it is used or is useful? How do they envisage it is used? Do we have any ideas about the best way to keep ‘just in case’ information? I suspect that while this review focused on carers of people with living with dementia, its findings might be transferable to other carers.
Conflicts of interest
No conflict of interest
Dalmer NK (2018). ‘Add info and stir’: an institutional ethnographic scoping review of family care-givers’ information work (PDF). Ageing & Society. 1-27.
Barnes M, Henwood F (2015). Inform with care: ethics and information in care for people with dementia. Ethics and Social Welfare. Apr 3;9(2):147-63. [Abstract]
Samsi K, Manthorpe J, Rapaport P (2011). ‘As people get to know it more’: experiences and expectations of the Mental Capacity Act 2005 amongst local information, advice and advocacy services. Social Policy and Society. Jan;10(1):41-54. [Abstract]