Tuesday, 8 April 2014

Research opportunities to work with me at the University of Warwick




If you’ve been reading some of my blogs over the past couple of years and might be interested in doing research as a research assistant or a PhD student, then we have three opportunities open that may interest you (see below). If you’ve come to this page specifically because you’re interested in PhD study or a research assistant job, then read on and also take the chance to read some of my blogs to get a feel for some of the work that we’ve been doing in the past few years.

Including information on this blog is also partly an experiment. All three research positions open at the moment are being advertised over the Easter break, and so I won’t be around to answer queries. I wanted to devise an accessible place where people could find out more information.

Research assistant position working on the “Beat-It” trial

We have a full-time research assistant position available to work on a trial of behavioural activation and guided self-help interventions for adults with learning (intellectual) disability with depression. The project is a multi-centre RCT led by Glasgow, and with Lancaster and Bangor Universities. Very nice team to work with, and a great opportunity! 

We’re looking for someone with a psychology background or closely related discipline in terms of degree training. The post-holder will be employed at the University of Warwick, but will spend a good deal of time traveling to visit people with a learning disability to collect research data. Data collection will be in NHS services in North Wales, and possibly in NHS services in the West Midlands and the North West of England. So, this might be suitable for people based in a variety of locations including living in North Wales. Click on the link below to see more information and to apply.

http://www.jobs.ac.uk/job/AIM714/research-assistant-74823-034/

Two ESRC Doctoral Training Centre PhD collaborative studentships on Family Research in Intellectual and Developmental Disabilities

The Centre for Educational Development, Appraisal and Research (CEDAR - http://www2.warwick.ac.uk/fac/soc/cedar/) at the University of Warwick is offering two ESRC DTC collaborative PhD studentships starting in October 2014. Both studentships are jointly funded by the research charity Cerebra (http://www.cerebra.org.uk/English/Pages/home.aspx) and the studentship holders will work collaboratively with Cerebra throughout their studies.
The research projects will focus on the Cerebra 1,000 Families study, which will be a large scale survey study of families of children with intellectual and developmental disabilities (including autism). The studentship holders will lead data collection and carry out research using data from the 1,000 Families study working on questions relating to family systems, and positive well-being in family members.
Both students will be supervised by Professor Richard Hastings, Cerebra Chair of Family Research based in CEDAR along with other CEDAR colleagues and Dr Stephanie Jones (Deputy Head of Research and Education at Cerebra).


Please note that to apply you must first complete the general application for PhD study at the University of Warwick. This application process is free:


When prompted, you should select to study for the PhD in Education and Psychology (the name of CEDAR’s PhD programme).

Once you have completed the University application, you will be given a student number. Once you have that, click on the Apply button at the very end of the jobs.ac.uk advertisement (link above) and you can apply for these specific ESRC DTC funded studentships.

Further information about the focus of the PhD research

The text below is taken from the application we submitted to get the PhD funding. We are committed to delivering something close to the foci described at the end as PhD Studentships 1 and 2 – something about parental positivity, and another thesis on family systems questions (we chose to focus primarily on fathers, but with systems questions in comparison with mothers, and potentially in connection with siblings). Thus, there will be some flexibility to develop the focus of each student’s work but we are committed to making sure that these broad issues will be addressed by one or two of the studies/analyses that each student carries out.

Please note that interviews will probably take place on Tuesday 13 May at the University of Warwick.

The proposed research with Cerebra would focus on families of children with intellectual disability (ID) or autism. To be able to make a significant leap forward in ID and autism family research, a large-scale longitudinal study is needed. We propose to establish the “Cerebra 1,000 Families Study”. 

There is no existing large-scale (more than 100-200 families) ongoing longitudinal study of the families of children with ID or autism in the UK. Two of the other most productive family research teams in the world have produced most of their research from longitudinal studies. Baker, Blacher and Crnic (University of California Los Angeles, UC Riverside, and Penn State University) have had funding for the Collaborative Family Study over approximately 10 years, and Seltzer and colleagues (University of Wisconsin Madison) have had a series of US National Institutes for Health government grants to study families of adults with autism or ID over approximately 20 years. A recent MRC review of cohort studies within the UK on children or adults with ID revealed no studies with high quality data on families.

The proposed collaborative research would be a high impact investment in UK ID/autism research infrastructure, with the potential to lead to decades of high quality family research.

Design and methods
Our aim would be to recruit the families of 1,000 children between the ages of 4 and 11 years with ID or autism into the study over the three years from October 2014. One or two home visits to 1,000 families would be prohibitively expensive in human resource and travel costs. Therefore, given the PhD resources potentially available, we will adopt an internet/postal and telephone survey methodology. Creating linkage with our ongoing work on the secondary analysis of national population studies (especially the Millennium Cohort Study), key measures of parental well-being and child behaviour, and also family deprivation, would be chosen to overlap with UK national datasets. This will allow some comparison with families of children without ID or autism when this is useful.

We would collect data in the following domains (using robust measures that are as short as possible):

  • Child and family demographics, including detailed socio-economic/deprivation variables
  • Prosocial behaviours, behavioural (including behavioural sleep difficulties) and emotional problems, and autism symptoms of the child with ID or autism – parent report
  • Parental positive perceptions, stress, and mental health
  • Parental psychological variables – social support, coping
  • Parental perceptions of family strength and cohesion
  • Parenting attitudes and behaviours
  • Siblings’ pro-social behaviours, and behavioural and emotional problems; quality of sibling relationships

All of the above measures would be collected from both parents (primary and secondary parental caregivers) where there is more than one parent in the household, and from one parent only in single parent households.

Data would also be sought in a telephone interview with the primary parental caregiver (usually, mothers identify themselves in this role). Information would be collected on the adaptive behaviour of the child with ID or autism (using a standardised scale – the Vineland Adaptive Behavior Scales), and a brief five minute measure (the Five Minute Speech Sample [FMSS]) of the parent’s relationship with the child with ID or autism and a sibling (where there is another child in the same age range within the family). A brief telephone interview with the secondary parental caregiver (usually, the father), where available, would also be conducted to complete the FMSS.

Research questions/PhD research projects
The two PhD students would work together as a small team together with the Cerebra research staff member (.20FTE) to recruit families into the study and to collect the data. Placement students/interns may also be taken on and trained by the research team to contribute to data collection and/or data entry. Overall, a large cross-sectional dataset will be established with data from multiple family members.

Each of the two PhD students will use the cross-sectional dataset to carry out a series of studies in their own area of research. Both students will be able to complete their systematic literature review studies in parallel to the main data collection.

PhD student 1 would focus on theory and quantitative data on maternal positivity in relation to their child with ID or autism. We have shown in previous research that parents report increased levels of stress when they have a child with ID or autism, but they also report positive perceptions of their parenting role and positive perceptions of their child. Interestingly, parents have reported similar levels of positive perceptions as do parents of children without disabled children. The PhD student will carry out a systematic literature review of research on positive perceptions/outcomes in parents of children with ID or autism, including an exploration of relevant theoretical models. A series of cross-sectional analyses (individual research studies) will then be carried out using the dataset. First, the student will explore the implications of maternal positivity for maternal well-being. Both a main effect model (positive perceptions are an independent well-being outcome) and an interaction perspective will be explored. The interaction perspective suggests that positive perceptions may be a coping response acting to protect parents against significant parenting stress (Hastings & Taunt, 2002). Second, the student will explore the putative implications of maternal positivity for the well-being of the child with ID or autism. Using a cross-sectional design, associations between maternal positivity and child adaptive behaviour and behavioural and emotional well-being will be explored. Fathers’ reports of child well-being will be used wherever possible to ensure some independence of reported constructs. Finally, associations between maternal positivity and parenting have not been explored to date in the ID/autism research literature. Parenting behaviour and attitudes and the emotional aspects of the mother-child relationship (measured via the FMSS) will be associated with maternal reports of positivity. 

PhD Student 2 would focus on the psychological adjustment of fathers of children with ID/autism. The first study in this student’s thesis would be a systematic review and thematic synthesis of qualitative studies of the experiences of fathers of children with ID/autism. A number of quantitative studies would then be completed. The first of these will focus on the use of a multi-level modelling approach (to account for a within-family design) to explore whether fathers report different levels of well-being (negative and positive) compared to mothers within the same families. Fathers’ well-being will then be examined in a family systems design. Our pilot data suggest that fathers’ well-being is correlated with their partner’s well-being, but not with the behavioural or adaptive functioning of their child with ID/autism. We will examine these same systems questions and extend this to also include the behavioural and emotional well-being of siblings within the same family. The third analysis/study will focus on fathers’ parenting behaviours/attitudes and father-child emotional relationship (as assessed using the FMSS). Parenting and father-child relationship has been very rarely studied in ID/autism family research. Thus, we will examine these variables as “outcomes” (recognising the limitations of the cross-sectional design) to explore family demographic factors, child with ID/autism variables, and father psychological resources (coping, social support) as correlates of fathers’ parenting.

Tuesday, 1 April 2014

Will the siblings be OK?



At a recent autism conference for parents and professionals, one of the speakers was a clinical psychologist and also sister of a young man with autism. This speaker gave an engaging presentation about being an older sister. Although there were clearly challenges for the speaker and other siblings like her, she ended up suggesting that parents needn’t worry so much because “the siblings will be fine”.

My presentation followed this speaker’s, and I was talking about siblings too. It struck me what a useful summary statement she had made.

I have recently completed a research evidence review about young siblings (children and adolescents who are brothers or sisters) of children with intellectual disability or autism. This has been published by Sibs, and is free to download. The report includes a summary of the research evidence, and some practical and future research recommendations. You can download a pdf copy of the report by following this link:

 
We also have two new research papers about to be published that are also focused on well-being in siblings (of children with autism). You can read the summaries of these studies by following the links below:



Three different perspectives on whether siblings are doing OK

The two research papers mentioned above are drawn from a larger study of families of children with autism that we carried out for Mike Petalas’ PhD a few years ago now. As a part of the study, we asked mothers to rate the psychological adjustment of the sibling in the family who was the closest in age to the child with autism. We also asked fathers to do the same thing, and to think about the same sibling. Finally, if the siblings were at least 11 years of age we also asked them to tell us about their own well-being.

Mothers, fathers, and siblings themselves all used the same measure of psychological adjustment – the Strengths and Difficulties Questionnaire (see http://www.sdqinfo.org/). This questionnaire measures psychological difficulties (conduct behaviour problems, hyperactive behaviours, problems that children may have with their peers, and emotional problems) and strengths (children’s pro-social, or positive social behaviour). Each of these five domains can be scored separately, and you can also generate a “total difficulties” score by combining the four psychological difficulties domains. The other very useful thing about the SDQ is that it has been used in several large scale studies of British children and so there are data available about what we can expect for typical children in the UK in terms of their psychological adjustment. We were interested in comparing reports about the psychological adjustment of siblings of children with autism with these “normative” data for British children. 

Each of the scores that are obtained from the SDQ can be converted to show whether (or not) a child is being reported as having problems at a level that would indicate some concern about the child’s behaviour or emotional problems. This means we can look at whether the proportion of siblings of children with autism scoring at high (worrying) levels on the SDQ is any different to the proportion of high levels of problems we would expect anyway for British children.

The following graph shows the proportion (%) of a sample of 168 siblings of children with autism whose mothers reported behavioural and emotional problems for the sibling at levels that might indicate concern. So, this is the first of the three perspectives – what mothers say:
There are two points I think are important to consider from these data. First, across all of the domains of psychological adjustment rated by mothers the majority of siblings DO NOT have concerning levels of problems. Second, compared to the normative data (what we’d typically expect for British children generally), siblings of children with autism are no worse off in terms of hyperactive behaviours and problems with peers. However, mothers do report these siblings as having more emotional problems and more conduct behaviour problems (and more total difficulties) than British children generally, and also as having lower levels of pro-social behaviour.

Within the same families, and focused on the same siblings, we also had SDQ ratings completed by 130 fathers. This is the second perspective (the proportion [%] of siblings with concerning levels of problems) – what fathers say:
These data from fathers about siblings of children with autism lead to three key observations. First, again it is important to say that the vast majority of siblings are perceived by fathers to be OK – they DO NOT have concerning levels of problems. Second, fathers think that siblings have fewer problems than do mothers. Third, as with mothers, fathers do report that siblings of children with autism have more problems than typical British children but this turns out to be only for emotional problems and lower levels of pro-social behaviour.

Again, from the same families, 60 older siblings (11 years of age or older) completed SDQ questionnaires about themselves. This is the final and third perspective (the proportion [%] of siblings with concerning levels of problems) – what siblings themselves say:
Three observations again can be made about these data from siblings. First, the vast majority of siblings are NOT reporting levels of problems at concerning levels. Second, siblings themselves report a lower level of problems than that suggested by their mothers and fathers. Third, it turns out that the only SDQ domain where siblings report a reliably higher level of problems than typical British teenagers is for problems with peers.

Conclusions – it depends who you ask

The data from our two research studies also lead to conclusions similar to the research review published by Sibs. Mothers, fathers, and siblings of children with autism themselves all agree that problems of psychological adjustment are by no means inevitable for siblings. In fact, all agree that the vast majority of siblings are doing OK.

Mothers and fathers in particular do agree, however, that siblings of children with autism have more psychological adjustment problems than British children generally. Siblings themselves report slightly more problems than typical young people in the UK, but these differences are not pronounced.

Mothers tend to think siblings have more problems than do fathers, and siblings themselves report even fewer problems. We cannot tell who is “right”; who is giving the most accurate report of siblings’ psychological adjustment. In many ways, this does not matter because the main point is that the answer to the question of whether siblings are doing OK depends very much on who you ask. It is important to get multiple perspectives in any clinical or research setting since asking only one person (mother, father, or sibling) will not give the full picture.

Wednesday, 5 February 2014

What use is theory to supporting people with challenging behaviours?

In a special issue of the International Journal of Positive Behavioural Support at the end of 2013, my co-authors and I took perhaps the unusual step of beginning a debate on the question of "What is Positive Behaviour Support?" by presenting a model/framework outlining what we know about why challenging behaviours occur in people with intellectual and developmental disabilities.

Whether or not you agree with everything that we weave together into our model, and putting aside the fact that for many dimensions discussed it would be nice to have better quality supporting research evidence, I believe that the world of PBS must start with an understanding such as the model we describe. The reason for this is that it is hard to understand what you need to do (what PBS is, and how you deliver this) unless you understand WHY you are doing it. The WHY is all about a conceptual understanding or an underlying theoretical model. Perhaps what is different about our approach is that the theory and why questions are not focused on the theory OF PBS, but rather a conceptualisation of the "problem" that PBS is designed to address.

The model paper that I am talking about is:


Hastings, R. P., Allen, D., Baker, P., Gore, N. J., Hughes, J. C., McGill, P., Noone, S. J., & Toogood, S. (2013). A conceptual framework for understanding why challenging behaviours occur in people ­­­­with developmental disabilities. International Journal of Positive Behavioural Support, 3 (2), 5-13.

Information about the journal can be found here:
http://www.bild.org.uk/our-services/journals/ijpbs/

Many services in the UK will have received a free copy of the IJPBS special issue on defining PBS so you should be able to access this paper. If you cannot, please email me directly: R.Hastings@warwick.ac.uk


Why should services and practitioners give a monkeys about theory?

The answer to this question is implicit in my introduction above - that to fully understand PBS, you need to understand what we know about why challenging behaviours occur. Once practitioners have grasped the underlying conceptual model, there are some profound implications. One is that so much of the underlying theory (and the practice related directly to the theory too of course) is rooted in Behavioural Psychology. Thus, you cannot have PBS without Applied Behaviour Analysis. PBS IS ABA in many ways, and its roots are in behaviour analysis. A second implication is for those hard-line ABA folks who suggest that PBS is NOT good ABA. Once you look at the interlinking/related factors that might lead to the emergence and maintenance of challenging behaviour (see our "model"), it is clear we are dealing with a complex system. ABA folks have key skills and key roles to play, but their competencies do not cover by any means all of the relevant dimensions.

This point about behavioural theory can also be extended to other theoretical ideas. Once you see the complexity of the system surrounding challenging behaviour in a clear model, it gives people a lens through which to assess the latest fads and ideas. Anyone suggesting a new all-encompassing theory that changes the way services ought to be organised around challenging behaviour is unlikely to be able to capture all of this complexity. In our review paper, we use the example of trauma-focused care. Of course, sensible people are suggesting we should look at trauma-focused models and see what they have to offer developments in PBS and those sensible people do not suggest we throw out everything else. If anyone was suggesting this though, the lens of the conceptual model shows us why this would be an unhelpful position. Some challenging behaviour, not all, might be associated with traumatic events. Some carers, not all, might experience trauma-like reactions to being exposed to serious challenging behaviours. See how the lens works?

We are also used to hearing that to work effectively to support people with intellectual disabilities whose behaviour challenges, we need a multi-disciplinary approach. I'm fed up with hearing this point being used to justify unco-ordinated teams of people doing their little pieces in the life of the person whose behaviour challenges. Defending professional groupings seems to be the priority. However, what these debates suffer from at present is the lack of a Unified Conceptual Framework. If everyone could sign up to a framework such as the one we describe, this would also help to clarify what competencies (not professionals, note) are needed within a team to work together effectively to provide support to those whose behaviour challenges and their families and carers.

How can services use the Hastings et al. conceptual framework?

It is important to start by saying that the conceptual framework we described in our paper is intended as a way to open and inform the debate, not necessarily as a fully comprehensive unchallengeable theory. That would be ridiculous. We do think, however, that we ain't done a bad job of pulling together sometimes unconnected areas of research and practice. Feedback so far supports that position, of course often with various qualifications.

Several times recently though, I have been asked what it might all mean for how PBS services should be designed. I have also been asked what we might need to do to train everybody within intellectual disability services in a way that will ensure better support to those whose behaviour may challenge. My answer is to start with a clear, agreed, conceptual model like ours.

As I'm only a humble researcher, I have restricted my responses then in the following ways. I hope that these thoughts may be useful:
  1. Service level organisation. In terms of overall aspects of a quality service, and one that may stand a chance of reducing the likelihood of challenging behaviours emerging, I think the conceptual model gives a good idea of what we need to do. For example, better screening, identification and treatment for physical health conditions is important in a good quality intellectual disability service. It will also contribute to some reduction of the risks of challenging behaviours emerging. Improving friendship networks and general social support is important anyway for quality of life. It will also contribute to some reduction of the risks of challenging behaviours emerging. I won't go through every aspect of the model - I think you get the point. Much of this is not new in terms of what makes a good intellectual disability service. However, the specifics of linking this to attempts to reduce the risk that challenging behaviours may emerge perhaps is more novel. 
  2. Assessment and Intervention for Challenging Behaviour. When it comes to then how best to support a person who has already developed behaviours that challenge, I come back again to the conceptual model. For me, it guides what should be a part of a fully comprehensive assessment that then directly informs a multi-element Behaviour Support Plan (BSP).
  3. Competencies and Training. If we are thinking about services especially with paid support staff, then this two-level thinking I suggest gives us the building blocks for the design of training relating to challenging behaviour. A broad range of competencies (unlikely to be available via a single professional) is needed to carry out a comprehensive assessment and to design, deliver, and monitor a high quality (and likely more effective) BSP. Training needs to target all of the core competencies and an idea of how to effectively access the rest (e.g., by partnership with other professionals, the person with intellectual disability and/or their family). If we're thinking about what training ALL intellectual disability staff should engage with  under the "challenging behaviour" topic (e.g., the basic induction training), I wonder if the answer may be somewhat different to what many services do currently. So, it seems sensible that we will need to explain what we mean by "challenging behaviour" and greater emphasis probably needs to be placed on the fact that challenging behaviours are defined socially. However, what next? You may be surprised that I would suggest perhaps NOT to explain the behavioural model underlying much of our understanding of challenging behaviour. Instead, what are the key points in the conceptual model that if you could influence across a service would make the largest difference? The answer to this question requires some thought and actually some research, but how about: (a) some coping skills for staff to deal with their emotional responses when challenging behaviours do occur, and (b) some way to increase their empathy with the life situation of people with intellectual disabilities?

Please do extend this debate by leaving comments on this blog