Friday, 2 May 2014

Who cares about families of children and adults with disabilities?



This blog is really about who cares about Research about families, so my apologies if you think you have been brought here under false pretences. Now you are here though, do read on anyway and let me have some feedback.

This is perhaps a more informal and reflective blog than my usual ones. I do try in these blogs to include information about research so that folks who can’t ordinarily access research reports get to hear about some of the stuff we and others do. There will be little direct reference to research in this blog. However, it is about research.

The “A Future Made Together” research summary report

I’ve been reflecting on two things this morning. The first is recent social media interest in a report from the Centre for Research in Autism and Education at the Institute of Education in London. This report is about what kind of research has been funded and published in the UK around autism and if this is correct in terms of balance when we look at the priorities of various stakeholders including families. The report can be downloaded for free from here [http://newsletters.ioe.ac.uk/A_Future_Made_Together_2013.pdf]. Nice stuff.

This report included input from family members of children or adults with autism giving their views on what the priorities ought to be for autism research in future. One of the things I was struck by was that there is pretty much no mention of research focused on the families of individuals with autism and their own needs and experiences. 

I am left wondering if the stakeholders who were a part of this process just didn’t think about families and their needs, whether the questions they were asked unintentionally led people away from thinking about families, or whether genuinely nobody cares about families and thus about family research. Of course, this last question is too strongly worded but I want to build on this point.

Googlilocks – Whose been looking at my blogs?!

The element of data that I do want to refer to in this blog is courtesy of Google. My blog uses their platform Blogger of course, and so I can see data on how many “views” there have been of my blog pages in total (over 46,000 since October 2012 – thank you for watching!) and also for each blog. The data on each blog are less clear (not a clear relationship with total views) but they do give a pretty good idea of which blogs people have been looking at. I’m not going to take these data too seriously because “views” will be influenced by what people search for online and any match with the blog titles I use, and probably by many other factors. However, the data have caused me to reflect further on this point about who cares about families.

My blog views show that when I write about behavioural/educational interventions in the field of autism, and to a lesser extent on topics relating to the scandals around the treatment of people with an intellectual disability and challenging behaviour, I have accumulated thousands of views. In contrast, when I have written about family research in autism or intellectual disability the “views” amount to several hundred. Don’t get me wrong – I am delighted if one person might view (and actually read!) a blog of mine. My point is the contrast in the data.

So, let me pose the question again – does anyone care about family research in intellectual disability and autism?

Family Research

There is a thriving international community in intellectual and developmental disabilities (IDD) family research. This is reflected in the existence of the Families Special Interest Research Group of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (or IASSIDD for short). There is even a free download consensus report on what we know about families from research so far internationally [see - https://iassid.org/famdap]. Many of the same researchers carry out research about families and their needs and experiences when there is a person with autism or a person with intellectual disability in the family. So, I don’t think this is a neglected area of research in general, but does anyone else care about this research is what I want to know.

One thing I am wondering is whether my blogs (and our research) about families contain too little headline grabbing shock horror news. I deliberately avoid being overly negative and sensational about families’ experiences. This is not to deny that some families have a terrible time and are under really serious pressure and stress. They clearly are. It is just that I think many individuals and organisations are tempted to go beyond the data somewhat by being more dramatic than they need to be.

To see what I mean, you can check out two of my blogs about research and families. First, I argued that although more parents of children with IDD are under significant stress than other parents, it is not the case that the majority of parents are reporting significant psychological problems [see http://profhastings.blogspot.co.uk/2013/03/autism-stresses-and-positives-for.html]. I also argued that mothers of children with IDD reported as much positive well-being than other mothers, but just more negative stuff.

Second, my overview of research findings about siblings shows that the vast majority of siblings of children with IDD are only just a little more likely to report psychological problems than other children, especially when we ask the siblings themselves [see http://profhastings.blogspot.co.uk/2014/04/will-siblings-be-ok.html]. Again, there are siblings who face additional stresses but the picture is not as negative as some people make out.

Why should you care about family research?

Here are three straightforward reasons why I think more people should care about family research.

First and foremost, the family is the context for much of development for most of us and that includes people with IDD just as it does anyone else. So, to understand many of the experiences of children and adults with IDD and the influences on their lives we must understand their families. Sometimes, the influence of families (just as for all us humans) can be negative, but of course there are huge positive impacts on later development of a supportive family environment.

Second, following on from the first point, if we want to maximise the life chances of people with IDD as adults and throughout their lifespan, one of the places we can have the most influence is through the family. Of course, in many countries, the other dominant influence could be through school (since children spend a lot of time there…). The family context is the significant one internationally.

Third, family members caring for, supporting or just living with people with IDD do have additional needs compared to family members who do not have members with IDD. The research so far tells us that (see links earlier in relation to parents and siblings, for example). In their own right, they need society’s support but also by “caring for the carers” we can have further positive impact on the lives of people with IDD.

What do you think about family research?

This blog is very much intended to elicit some responses from people out there who come across it. Please do leave comments on the blog or just email me your thoughts (you can find me easily online). A few questions/prompts follow two which you are welcome to respond.

First, do you care about research about families of people with IDD? Are you interested? What has interested you?

Second, it can be hard to get research funding to support family research in IDD (although I must acknowledge thanks to Cerebra [http://www.cerebra.org.uk/English/Pages/home.aspx] for their generous funding to support family research over the coming 5-6 years). Has anyone else experienced this difficulty, or do you have views about this?

Third, what are the priority questions that researchers should be addressing about families of children and adults with IDD?

To finish off, I saw a slightly amusing tweet recently from someone saying they had room on their CV for an award or two if someone wanted to give them one. So, if anyone out there has a few tens or hundreds of thousands (or indeed millions) of pounds/dollars they want to devote to family research, then I have some ideas (and hope to have more from responses to this blog)…

3 comments:

  1. Think this is a very thought-provoking blog Richard.

    I think you make a very important point about what and how gets mainstream (or even specialist) media attention - charities can be powerful mediators of this and as you say many charities think the way to get attention (and maybe prompt action and/or donations) is to spark outrage. I'm deeply ambivalent about this for a number of reasons I won't dwell on here, otherwise this comment will turn into a blog.

    Think also what gets researched can feel very remote (in topic, language, method, and how findings are shared) from what families think is important and what research should be for. Open, honest alliances are needed I think.

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    1. Thanks Chris. Reminds me of a broader discussion about how "we" in general portray people with disabilities and probably their families too - with the general model being one about pity. Often, this perspective fails to match with the research data - quite apart from the other rights and wrongs of this.

      Partly what I'm hoping to get from family members is some feedback about whether they have found existing family research useful/interesting plus what family research questions need addressing. Too often, getting families' perspectives is all about their perspective on the family member with disability rather than their own needs...

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