22q-Connect - The lived experience of teens and young adults with 22q11.2 deletion syndrome (22q11DS) and their families.
Do you have a teenager or young adult child (aged 15-30) with a diagnosis of 22q11.2 Deletion Syndrome, and currently live in Australia? If so, we need your help! In collaboration with the 22q Foundation Australia and New Zealand Home, Dr Linda Campbell and her research team from the University of Newcastle are investigating the lived experiences of teenagers and young adults with 22q11DS and their families.
We would like to invite you and your teen/adult child to participate in focus groups to talk about your experiences with a particular focus on what is and what is not working for your family, your hopes and worries for the future, and your needs for support and knowledge. We will hold separate sessions for parents, teenagers and young adults.
To find out more about this opportunity to have your voices heard, please click here to read the information statement and to register your interest using the contact form.
The first scheduled focus groups will be held in Sydney on the 9th of May, 2020 - if you are able to attend that day, please let us know using the same contact form.
If you know anyone who might be interested, please SHARE the link to this webpage to help us reach as many people as possible.
Thank you for your help!
Parenting a child with special healthcare needs can be difficult. Psychoeducation has been shown to significantly benefit parents. The purpose of this research is to test the feasibility of a web-based interactive e-health support resource. The resource is designed to provide education, knowledge and a way of connecting with other parents to help support parents in their role of parenting a special healthcare needs child.
If you are a parents of child with special health care needs; if your child is aged 0 to 18 years; and you have access to the internet on a computer and or smartphone then you are invited to participate in the study.
You will be asked to complete an pre-access eHealth questionnaire. This questionnaire will provide the researchers with some demographic information as well as some basic information about your current wellbeing. After you have completed the questionnaire, you will be granted a week’s access to the support resource to explore the content. After one week, you will be required to complete another questionnaire that will take approximately 30 minutes . In this questionnaire you will be asked to provide feedback on the the resource as well as provide some basic information about your wellbeing.
If you are interested in finding out more contact the researcher at email@example.com or click here to enter the study.
This study is being conducted by Dr Linda Campbell, Mrs Heidi Emery, and Ms Jaime Wroe from the University of Newcastle.
You might have participated in our BLT-ID study, if so you might be interested in our recent publication.
In this paper we aimed to examine the prevalence and severity of psychological distress of women with asthma in both the prenatal and postnatal periods, and to determine whether asthmatic women with and without mental health problems differ in self-management, medications knowledge, and asthma symptoms. We included data from 120 women with information about prenatal depression data obtained from medical records and through self report at 6 weeks postpartum. We found that twenty percent of our sample reported having a current mental health diagnosis, 14% reported currently receiving mental health care, while 47% reported having received mental health care in the past (and may/may not have received a diagnosis). More specifically, we found that overall women in our sample were more likely to score higher than expected on aggression, avoidant personality and attention deficit/hyperactivity scales. Poorer self-reported postnatal asthma control was strongly correlated with elevated somatic complaints, externalizing problems, antisocial personality problems, and greater withdrawal. However, prenatal spirometry or asthma severity and control were largely not associated with measures of psychopathology. These findings indicate that pregnant women with asthma frequently report issues with psychopathology during the prenatal and postnatal periods, and that the subjective perception of asthma control may be more related to psychopathology than objective asthma measures. However, due to sample bias, these findings are likely to be understated.
If you are interested in reading more about our research information processing information processing, click on Whalen, OM., Campbell, LE., Murphy VE., Lane, AE., gibson, PG., Mattew, J., Collison, A., Mallise, CA., Woolard, A., Karayanidis, F/. (2019) Observational study of mental health in asthmatic women during the prenatal and postnatal periods published in the Journal of Asthma.
Being a new parent can be difficult. Psychoeducation has been shown to significantly benefit parents in the transition to parenthood. The purpose of this research is to investigate the effects of game-based learning using an interactive m-health game. M-health is the use of mobile phones in health-based communication and games. The ‘Choose Your Own Parenting Experience’ is a fun, interactive, game-based experience modelled on the ‘Choose Your Own Adventure’ format designed to be played on your mobile phone. It is designed to equip parents with parenting tips and knowledge to help them on their parenting journey.
This study is being conducted by Dr Linda Campbell, Ms Jaime Wroe and Ms Miranda Cashin from the University of Newcastle.
Who can participate?New parents can participate in the study, if they:
If you are interested in participating in the study or have any questions, please email firstname.lastname@example.org or go to the study website by clicking on this link).
Are you the parent of a child, or young person with 22q11.2 deletion syndrome or Autism spectrum disorder?
Linda Swaab is a PhD candidate in the School of Psychology. Linda completed her Bachelor of Psychology (Hons I) at the University of Newcastle in 2015. Her honours project investigating the lived experience of parenting an adult child with ASD who is aggressive was recently published in Advances for Mental Health. In her PhD program, Linda will explore the parental experiences of having a child with 22q11.2 deletion syndrome or Autism Spectrum Disorder. She would like to interview around 40 parents in total and the interviews will take about 1 hr. The interviews can be carried out in person or over the phone.
So, are you the parent of a child aged 11-35, who has been diagnosed with 22q11.2 Deletion Syndrome (22q11DS) or Autism Spectrum Disorder (ASD)? If so, we would like your help.
We are conducting two studies: one aimed at parents of children aged 11-18; and another aimed at parents of children aged 18 – 35. Both of our studies are interested in how you have made sense of parenting a child with a diagnosis of 22q11DS or ASD. We are interested in how behaviours sometimes associated with 22q11DS or ASD impact positively and negatively, from your perspective, on parenting and the day-to-day functioning of family life and relationships.
Please be assured that your information will remain confidential and all data collected will be de-identified.
Codie Atherton was just awarded a Master of Clinical Psychology degree after completing her thesis titled “Developing a Brief Measure of Coparenting Competence: The Coparenting Competence Scale” under the supervision of Dr Linda Campbell and Dr Chris May (Family Action Centre).
Within the family, one of the most significant relationships that occurs is the coparenting relationship. This is the one that parents share in the raising of children. Recent research by May, St George, Fletcher, Dempsey, and Newman (2017) has developed the concept of coparenting competence, which is the sense of collective parenting efficacy that parents experience in raising children, that is generated in the coparenting relationship and only exists in association with that partnership. The concept of coparenting competence bridges a gap between family systems thinking and efficacy theory wherein research has previously focused on the self-efficacy of one or either parent and not the collective efficacy within the parenting partnership.
In order to learn more about how well parents think they parent together and to enable studies in which coparenting competence is measured - in the current study - we developed a self-adminstered measure of coparenting competence – the Coparenting Competence Scale. The measure was designed by experts in collaboration with parents. The reliability and validity of the measure was tested by asking 302 participants, who were currently living together with their child and had at least one child aged 17 years or younger, to complete the measure online. The current study found support for the reliability and validity of the scale and also found that coparenting competence, assessed by the scale, is distinct from factors previously used to represent coparenting quality in multivariate measures. The current study makes an important contribution to coparenting research with the development of a reliable and valid measure of coparenting competence. The development of the scale adds to the literature by demonstrating that this newly described construct is distinct from factors previously used to represent coparenting quality in multivariate measures. The scale adds to the field of coparenting research as a standalone measure, focused on efficacy, or as another assessable factor in multivariate evaluation of coparenting quality.
Codie’s thesis will be made available on Nova – The University of Newcastle’s digital repository. We are also currently writing up the findings for publication. We will keep you posted.
We are launching a new study exploring the parenting experience of having a child with a neurodevelopmental disorder and severe behavioural challenges such as aggression. We are particularly investigating aggressive behaviours in young people diagnosed with the 22q11.2 deletion syndrome or Autism Spectrum Disorders. We would like to learn more about the types of aggressive behaviours experienced, and also to learn more about how this behaviour affects the experience of parents and the impact these behaviours have on day-to-day family stress and functioning. This is important as there are no published studies exploring this phenomenon in 22q11.2 deletion syndrome and we cannot develop appropriate interventions unless we understand the needs of people with 22q11.2 deletion syndrome and their families.
Firstly, we would like to talk to parents of children aged between 11 and 18 who have a diagnosis of 22q11.2 Deletion Syndrome who are aggressive but we would also like to talk those who have children who are not aggressive. We would then like to talk to parents who have adult children with 22q11.2 deletion syndrome who were (or still are) aggressive in their adolescence.
To start off with the study is for Australian based parents only as we would like to conduct the interviews face-to-face. However, regardless of where you are from, if you have a child with the syndrome who is aggressive - and you are interested in participating in the study - send us a message and we will keep your details so we can contact you for the next phase of the study or organise alternative ways of learning more about your experiences.
Click here to read about the study and to send us a message. If it is not working you can always email us or contact us on Facebook.
Depression and anxiety symptoms during the transition to early adulthood for people with intellectual disabilities
Kristie Austin completed her Master in Clinical Psychology at the University of Newcastle back in 2015. Sometimes publications of data can take a long time but finally, we have published the findings in the Journal of Intellectual Disability Research.
The study explored the transition to adulthood is a major developmental milestone; a time of self-discovery and increased independence. For young adults (YA) with intellectual disabilities (ID), however, this period is especially challenging. The increased incidence of mental health disorders in this population, such as depression and anxiety, make this transition even more difficult, increasing caregiver burden at a time when the young adult would traditionally be gaining independence. It is not clear, however, why YA with ID are more susceptible and what factors may predict mental health symptoms.
The study found that the level of insight young people had was the strongest predictor of anxiety (with gender in the controls), with increased insight predicting fewer anxiety symptoms. However, YA with ID had significantly less insight than their aged-matched counterparts and significantly higher levels of anxiety. They were also less likely to have achieved traditional adulthood milestones. Maladaptive coping was the strongest predictor of depression for YA with ID. In comparison, both maladaptive coping and insight predicted depression in controls. More maladaptive coping predicted increased depressive symptoms in both populations, whilst increased insight predicted fewer depressive symptoms in controls.
Therefore, insight and maladaptive coping are potential targets in the treatment of anxiety and depression among YA with ID. Longitudinal intervention studies exploring the efficacy of such targeted programmes in reducing mental health symptoms and improving the transition to adulthood for these young people are recommended.
To read the full paper, click on the link below;
Austin, K. L., et al. "Depression and anxiety symptoms during the transition to early adulthood for people with intellectual disabilities." Journal of Intellectual Disability Research (2018).
The effects of maternal asthma during pregnancy on child cognitive and behavioral development: A systematic review
This week the most recent paper from our group got published in Journal of Asthma.
The article was a systematic review of the literature exploring the relationship between asthma during pregnancy and child development. Over the years, it has been well established that maternal asthma during pregnancy is associated with a higher risk of negative perinatal outcomes. However, little is known about the direct effects of maternal asthma on infant cognitive development.
We found ten articles that explored this question. When reviewing the articles, we found that some studies reported that maternal asthma is associated with increased risk for autism and intellectual disability in children. However, the effects were small and were often eliminated when controlling for confounding variables. Other studies found no association. The only prospective study found that well-managed asthma during pregnancy was not associated with negative developmental outcomes in children. We concluded that the evidence suggesting a relationship between maternal asthma during pregnancy and poor developmental and behavioral outcomes of children were weak.
However, in order to fully explore and understand the impact of asthma during pregnancy, we need to follow children for a long time after birth. This is what we are doing with are Breathing for Life - Infant Development study (click here to learn more about our study). There has also been some interesting Australian research reported in the media recently highlighting a link between maternal immune system functioning, including asthma, during pregnancy and child outcomes. See here 'Allergies and flu in pregnancy linked to child developmental disorders, like autism and ADHD' and 'Pregnant mothers' asthma and allergies linked to more severe autism in their children'.
Citation: Olivia M. Whalen, Frini Karayanidis, Vanessa E. Murphy, Alison E. Lane, Carly A. Mallise & Linda E. Campbell (2018) The effects of maternal asthma during pregnancy on child cognitive and behavioral development: A systematic review, Journal of Asthma, DOI: 10.1080/02770903.2018.1437174
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:
You can find Jane's slides from the presentation here.
Hi, I am Dr Linda Campbell. I am an Academic and a Clinical Psychologist. This blog is meant to keep you in the loop about the activities of of our research lab - the FIND Lab.