One of our FindLab alumni, Dr Jane Goodwin, has recently presented her PhD research at the 22q11 Europe 2nd Alliance Meeting at Trinity College, Dublin. Here is her account of the exciting experience:
 'On 7th October 2017, I presented my PhD research at the 22q11 Europe 2nd Alliance Meeting at Trinity College, Dublin. I focused on the positive psychological aspect of the experience of raising a child with 22q11. I spoke about a survey of parents of children with developmental disability. Our research found that:

• Communication between professionals in healthcare services is important for parents’ psychological health
• Health professionals should provide realistic expectations for parents, both positive and negative
• There is a need to bridge the gap between parents’ ideal and actual social support
• Interventions to promote specific adaptive coping mechanisms may be useful to promote parental psychological well-being

I also spoke about interviews that were conducted with parents who have a child with 22q11. We found that:

• The 22q11 diagnosis can be both positive and negative
• Parents felt stigma from healthcare services that invalidated them on their search for a diagnosis
• Parents of a child with 22q11 simultaneously experience conflicting negative and positive emotions
• Working to find meaning in their challenges allowed parents to experience psychological growth despite distress

It was wonderful to catch up with Anne Lawlor (Chairperson of 22q11 Ireland Support Group), who has been so supportive of FINDLab research. It was also great to meet other researchers and families living with 22q11. It was particularly inspiring to hear from the 22q Young Experts by Experience Panel, who shared the highs and lows of living with 22q11'.

You can find Jane's slides from the presentation here. 

It's been a busy week in the Find Lab! On Sunday (5/11/17) we had our hugely successful stall at the Central Coast Kids Day Out. It was a brilliant day, full of fun activities for the whole family. We'd like to say a huge thank you to all the families who braved the weather to come and say hi! 

We also had some of our honours students from the lab finish the last part of their degree this Monday (6/11/17). They presented their findings from this year, and did a wonderful job. Taylah looked at infant-directed speech and infant attention this year, supervised by Dr Linda Campbell, and Brooke looked at infant executive function and eye-tracking this year, supervised by A/Prof Frini Karayanidis. We are sad to see you both leave, but we can't wait to see what the future holds for you both!
Congratulations Taylah and Brooke!  

This Sunday, 5th November 2017, the FindLab will be hosting a stall at the annual Central Coast Kids Day Out! 
We are very excited to meet many Central Coast families and tell you all about our research. This will be a fun day out for the kids too, with kids shows, games and rides, stalls, entertainers, workshops and performances!
Come along and say hi to the friendly faces behind our lab. 
You  can find the event page here for more info.

The BabyMinds study has been in the news again, with one of our PhD students Olivia Whalen talking to ABC Central Coast about the project. You can listen to this interview here, where Olivia talks about what we do in our research and what we hope to achieve.
We now have our BabyMinds lab set up at the Ourimbah campus of the University of Newcastle, and we are keen to see some Central Coast Families. If you are interested in participating in this research, please contact us! You can call (02) 4033 9160, email babymindsstudy@gmail.com, or find us on Facebook.

Linda Swaab completed her fourth year Honours in Psychology research in our lab with the additional supervision of Dr Lynne McCormack. Dr McCormack is an expert on qualitative research which an exploratory research method used to gain an understanding of how people reason, what opinions they have, and what their motivations are. Linda was interested in exploring the lived experience of parents with children who not only have an autism spectrum disorder but also who has intermittent outbursts of aggression.
 
For her study, Linda interviewed three parents of adult sons, aged between 20-30, with ASD who display intermittent and unpredictable aggressive behaviours towards family members. The participants took part in a one hour long interview and then the interviews were transcribed and analysed using a methodology known as three may interpretative phenomenological analysis (IPA; to learn more about this methodology, click here)
 
When analysing the data, the overarching theme of the discourse was of complex parental distress and but also positive psychological growth. More specifically, the themes describe the psychological and emotional unpredictability that was relentless in daily life whilst parenting a child diagnosed with ASD complicated by outbursts of aggressive behaviour. Parents described experiencing a constant anticipation of potentially traumatic events. Parents also described experiencing powerful emotions of frustration, empathy, pity and an intense need to protect the child with ASD who displays aggression were in contrast with felt stigma and societal criticism. In time, parents developed their own pragmatic survival strategies for functioning as a family that could accommodate each family member’s needs as much as possible. Psychological well-being became a balance of striving for personal psychological growth despite the constancy of anticipatory traumatic events
 
If you would like to read the whole article, please click on the citation below. I am also glad to let you know that Linda has commenced a PhD to further study the area of parenting when having a child displaying aggressive behaviours.
 
Swaab, L., McCormack, L., & Campbell, L. E. (2017). Distress and Psychological Growth in Parenting an Adult Child with Autism Spectrum Disorder and Aggression. Advances in Neurodevelopmental Disorders, 1-11.

We have just launched a new survey study in which we are investigating how sleep problems affect children with neurodevelopmental disorders. The study is carried out by Justyn Hyde (who is a fourth year Psychology student at the UoN), Kathryn McCabe (MIND Institute, UC Davis) and I. So, if you have a child with a neurodevelopmental disorder aged 5-17 years old and you can spare 30-50 minute. Your child does not have to have any sleep problems, we would like to hear about all your experiences. Click on the picture to get to the survey. Feel free to share this survey link with others who might be interested. At the end of study we will post an update on the findings on our website. THANK YOU for supporting our research. 

It used to be that a village raised a child. Nowadays raising a child is the responsibility of two parents - sharing a journey and exploring their new roles as parent. For some parents this transition to parenthood comes easily, for most it is a challenge. In some parenting relationships the sharing of responsibilities come easily, others struggle. In our new study, we are interested in the parenting partnership. We are asking parents to complete a 15 minute survey about sharing their parenting experiences with their partner. We would love to hear from both partners but if only one can complete the survey that is fine too. Each survey is anonymous and your partner will not see your responses.

If you are interested in the survey - click here to learn more about the study. Feel free to share with friends and family. Thank you!

Alyce McKeough graduated with a Master of Clinical Psychology from the University of Newcastle in 2015. She was awarded 2015 Clinical College Student Award from the Australian Psychological Society for her research. Recently, Alyce's paper was published in the Children and Youth Services Review. It is a great achievement that we would like to celebrate. 

We would also like to acknowledge and remember Kylie Bear.  Kylie started this study as part of her PhD and it was great to have Alyce to complete and extend her research. Kylie passed away after battling with ovarian cancer. Kylie was loved by her clients, both children and carers, in her work as a clinician at Life Without Barriers. Her passion for the welfare of children in out-of-home care was striking and her PhD project reflected her passion and aimed to improve the lives of foster carers and the children they look after.  It was an inspiration to work with Kylie and to get to know her. 

Below you can read a summary of the paper, and if you want to read the whole article, click here. 

The unique demands of the foster carer role are associated with high levels of self-reported stress among foster carers. The current study examines the amount of carer stress that can be attributed to certain role specific challenges and how stress from these challenges varies between carers and placements. As a secondary aim the study examines carer perceptions on current organisational support and training. Participants were sourced from a national fostering agency with branches in the local area. Carers were eligible to participate in the study if they were caring full time for at least one foster child. Eligible carers completed an identical online or paper survey including measures of general stress and parenting stress as well as study specific measures regarding satisfaction with organisational training and support. Results demonstrated that challenging behaviours are the most stressful unique role demand for foster carers and the largest predictor of carer stress levels. Overwhelmingly carers reported a desire for additional training in order to support them in their role. The results support previous research outlining the difficulties faced by foster carers and the need to improve support and training to ensure good placement outcomes including placement stability and reduced carer attrition.

​McKeough, A., et al. "Foster carer stress and satisfaction: An investigation of organisational, psychological and placement factors." Children and Youth Services Review 76 (2017): 10-19.

Last year, Jane Goodwin submitted her PhD for examination. The thesis is titled "From general developmental disability to 22q11.2 deletion syndrome: Understanding parental experiences - A mixed methods analysis". Today Jane's second paper was published in the Journal Advances in Neurodevelopmental Disorders. It is a great achievement that we would like to celebrate. Below you can read the abstract of the paper, and if you want to read the whole article, click here. 

The presentation of 22q11.2 deletion syndrome (22q11DS) is symptomatically variable, presenting diagnostic challenges for paediatricians and anxious uncertainty in parents. The ‘lived’ experience of parenting a small child diagnosed with 22q11DS is unknown particularly how parents make sense, both positive and negative, of their role. A phenomenological study sought subjective interpretations from two fathers and four mothers of a young child (8–36 months) diagnosed with 22q11DS. Using interpretative phenomenological analysis, data were collected through semi-structured interviews and thematically analysed. Four themes embodied uncertainty and fear simultaneously experienced by these parents such as anticipatory traumatic distress, systemic stigma, confusion at professional smoke screens and ‘not knowing’. This cacophony of distressing emotions plagued their unanswered fear, guilt, loss and grief. In seeking hope, their parenting journey was able to be redefined as one of intrapersonal and interpersonal growth from the adversity of 22q11DS. This study provides a lens into the experiences of parents struggling to make sense of their journey with 22q11DS in the early parenting years. It highlights the complex distress of parenting a small child whose development is fraught with uncertainly and where stigma and suspicion are often experienced when seeking support from social and health systems. However, a metamorphosis of personal strengths also emerged facilitated by hope. Healthcare professionals can best assist through open discussion that acknowledges often limited knowledge, using the guidelines for management of 22q11DS in guiding parents.

Goodwin, Jane, Lynne McCormack, and Linda E. Campbell. "Positive and Negative Experiences of Parenting a Pre-school Child with 22q11. 2 Deletion Syndrome." Advances in Neurodevelopmental Disorders: 1-10.