Our new study BabyMinds have recently received some media attention. The BabyMinds study is investigating how infants attention and cognitive processes changes during the first year of life. The ABC recently did an interview with Alix Woolard, who is one of three PhD students working on the project. PhD students Olivia Whalen and Carly Mallise are also involved in the study, under the supervision of psychologist Dr Linda Campbell, occupational therapist Associate Professor Alison Lane and neuroimaging specialist Associate Professor Frini Karayanidis. You can listen to the 123ABC Newcastle interview by clicking here or read the accompanying news article. In addition, Hunter Medical Research Institute issued a media release.
It is all really exciting and we are looking forward to start the study in earnest. If you are interested to participate in the study or simply to learn a bit more about what we do - please contact us. Phone (02) 4033 9160 or email email@example.com
Distress and Psychological Growth in Parenting an Adult Child with Autism Spectrum Disorder and Aggression
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!
Foster carer stress and satisfaction: An investigation of organisational, psychological and placement factors
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.
This analysis aimed to examine the association of social dysfunction with food security status, fruit intake, vegetable intake, meal frequency and breakfast consumption in people with psychosis from the Hunter New England (HNE) catchment site of the Survey of High Impact Psychosis (SHIP). Social dysfunction and dietary information were collected using standardised tools. Independent binary logistic regressions were used to examine the association between social dysfunction and food security status, fruit intake, vegetable intake, meal frequency and breakfast consumption. Although social dysfunction did not have a statistically significant association with most diet variables, participants with obvious to severe social dysfunction were 0.872 (95% CI (0.778, 0.976)) less likely to eat breakfast than those with no social dysfunction p < 0.05. Participants with social dysfunction were therefore, 13% less likely to have breakfast. This paper highlights high rates of social dysfunction, significant food insecurity, and intakes of fruits and vegetables below recommendations in people with psychosis. In light of this, a greater focus needs to be given to dietary behaviours and social dysfunction in lifestyle interventions delivered to people with psychosis. Well-designed observational research is also needed to further examine the relationship between social dysfunction and dietary behaviour in people with psychosis.
Mucheru, D., Hanlon, M. C., Campbell, L. E., McEvoy, M., & MacDonald-Wicks, L. (2017). Social Dysfunction and Diet Outcomes in People with Psychosis. Nutrients, 9(1), 80
Miss Alix Woolard is a current PhD student at the University of Newcastle, under the supervision of Associate Professor Alison Lane, Dr Linda Campbell, Associate Professor Frini Karayanidis, and Dr Titia Benders. She completed her honours thesis last year on infant-directed speech, and is continuing her research into this topic for her PhD. The findings from her honours thesis were recently presented at the Sixteenth Australasian International Conference on Speech Science and Technology, and you can read a brief summary below. If you would like to read the whole paper, click here and go to page 229.
The way that mothers interact and speak to their baby is an important factor in infant development, particularly in the first year of life when babies are developing language at a rapid rate. Past research has demonstrated that mothers speak in a particular way to their infants, this type of communication is known as infant-directed speech. Infant-directed speech helps mothers communicate affect and regulate the attention of their baby but little is known about how the infant influences the way the mother speaks to them. One aspect of infant behaviour that has the potential to impact infant-directed speech is infant temperament. Infant temperament has been suggested to influence the way mothers interact with infants more broadly and refers to how infants react to the environment and regulate themselves. More specifically, infant temperament include characteristics like the mood and activity level of the infant. In this research project we investigated if infant temperamental characteristics were associated with the mothers’ infant-directed speech.
Eight mothers and their 6-month-old infants took part in the study at the Hunter Medical Research Institute. Each mother and her infant were recorded interacting with one another for 15 minutes. This recording was then used by the researchers to analyse the speech of the mothers, as well as the temperament of the infant.
The results of the study demonstrated that infant temperament characteristics e.g., approach behaviours and mood were associated with the mothers’ infant-directed speech indicating that the infant is actively participating in this interaction.
The findings from this study will form the foundation of Alix's PhD research and will ultimately assist in early interventions in infant development when there are issues with the mother-infant interaction. This study also highlights the importance of further research on the relationship between mothers and their infants early on in development, where infant-directed speech is particularly imperative.
Full Citation: Woolard, AJ**., Benders, B., Campbell, LE., Karayanidis, F., Mattes, J., Murphy, VE., Whalen, O., Lane, AE (2016). Exploring the association of infant temperament on maternal fundamental frequency contours. In Sixteenth Australasian International Conference on Speech Science and Technology (pp. 229-232).
We need to hear from you!
What are your experiences with the healthcare system as a parent of a child with 22q11.2 deletion syndrome
We would like to investigate the health care needs and health care experiences of children with the syndrome and their families. This study will involve completing an online survey about your (as a parent) experiences with healthcare providers, and your perceptions of the quality of care received in relation to your child with 22q11DS. If you agree to participate, you will be asked to complete a survey with questions relating to demographic information about your family as well as questions about your child with 22q11DS, specifically related to the healthcare they have received.
To learn more about the study click here!
Visual perception and processing in children with 22q11.2 deletion syndrome: associations with social cognition measures of face identity and emotion recognition
For many years now, Kathryn McCabe and I have been exploring social functioning among people with 22q11.2 deletion syndrome together with our colleagues.
It has been reported that many people with 22q11.2 deletion syndrome (22q11DS) have difficulty processing social information including recognising faces and recognising facial expressions of emotions. However, difficulties with visual and attentional processes may play a role in difficulties observed with these social cognitive skills. In this study, which was part of my PhD at the Institute of Psychiatry at King's College in London, I met with 49 children and adolescents with 22q11DS and 30 of their siblings from all over the UK. Over three days we worked our way through a lot of different tasks and some of them focused on how these young people processed faces and objects. With Kathryn's help we analysed the data and found that, compared to their siblings, the young people with 22q11DS had problems with perceptual processes related to how they perceived forms and shapes as well as the recognition of objects from unusual angles and faces. This has important implications for young people with the syndrome and can help explain why some of these young people have problems with social interactions. However, it also indicates that social problems are not uniquely affected but might be a symptom of more global problems with perception. Visual perception and processing, like ocular abnormalities, also impact learning, reading ability and other day-to-day functions. For instance, it might explain some of the problems that young people with the syndrome have when finding their way around. Anecdotally, many young people with the syndrome get lost easily and this could be linked to a poorer ability to recognise familiar landmarks when seen from unusual angles. Another example might be that children with the deletion have difficulty reading words in smaller fonts, but may find it a little easier when they are enlarged and there is more space between letters and words.
If you want to read the study click on the link below;
Citation: McCabe, K. L., Marlin, S., Cooper, G., Morris, R., Schall, U., Murphy, D. G., ... & Campbell, L. E. (2016). Visual perception and processing in children with 22q11. 2 deletion syndrome: associations with social cognition measures of face identity and emotion recognition. Journal of Neurodevelopmental Disorders, 8(1), 30.