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.
Miss Jane Goodwin is a PhD candidate who did her Bachelor of Psychology Honours project at the University of Newcastle in Australia with Dr Linda Campbell from the School of Psychology and in collaboration with colleagues from the Duke University, University of North Carolina and Tel Aviv University. Her Honours research was published and made available online through the Journal of Intellectual Disability Research.
Research suggests children with genetic disorders have better coping skills when they aware of their condition and its heritability. However, there is little research surrounding how parents make the decision to tell their child about their syndrome. We aimed to examine whether there was a relationship between the diagnosis experience (i.e. when parents were told their child had a genetic developmental disability) and the disclosure experience (i.e., when parents told their child about the child’s genetic developmental disability). Parents of children with 22q11.2 deletion syndrome (22q11DS) were compared with a group of parents with children affected with other genetic diagnoses, with a similar age of diagnosis (e.g. fragile X syndrome) and a group where diagnosis generally occurs early (i.e. Down syndrome).
Five hundred and fifty-nine parents and caregivers of children with genetic developmental disorders completed an online survey about their own diagnosis and disclosure experiences. They also answered questions about their coping styles.
Parents reported that the diagnosis experience was negative and often accompanied by a lack of support and appropriate information. Most parents who had a child with 22q11DS or a similar condition had disclosed the diagnosis to their child, whereas only a third of parents who had a child with Down syndrome had. Interestingly, 86% of parents who had a child with Down syndrome felt they had sufficient information to talk to their child compared with less than half of the parents who had a child with 22q11DS or similar conditions. Parents reported disclosing the diagnosis to their child because they did not want to create secrets. They considered the child’s age when disclosing. For parents who had a child with 22q11DS of a similar condition, those who had a negative diagnosis experience were more likely to have a negative disclosure experience.
This study highlights how difficult most parents find the diagnosis experience. Their personal experiences of the diagnosis can have a long-term impact on how well they cope with telling their child about the diagnosis. It is important for clinicians to consider the long-term ramifications of the diagnosis experience and give the parents opportunities to prepare for telling their child about the diagnosis. Further research is needed to explore what type of information would be useful for parents to receive.
Citation: Goodwin, J., Schoch, K., Shashi, V., Hooper, S. R., Morad, O., Zalevsky, M., ... & Campbell, L. E. (2015). A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders. Journal of Intellectual Disability Research, 59(5), 474-486.
You Don’t Know Until You Get There”: The Positive and Negative “Lived” Experience of Parenting an Adult Child With 22q11.2 Deletion Syndrome
Yesterday, 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". It is a great achievement that we would like to celebrate. Jane has written a summary of one of the research papers included in the thesis below. This paper has been accepted for publication in Health Psychology. For a full text of the article, click here.
Parents of children with disabilities are at particular risk of mental health problems and stress compared to family members of healthy children. These challenges continue as the child grows into adulthood. However, positive psychological changes can occur as a result of struggles. Little is known about the experiences of parenting a child with 22q11.2 deletion syndrome (22q11DS), even though it may occur as frequently as 1 in 992 births (Grati et al., 2015). 22q11DS presents challenges for parents because it is a complex genetic syndrome associated with more than 180 features. It is not well-known and thus there is often a delayed diagnosis. Therefore, we aimed to explore the ‘lived’ experience of parents on their journey with 22q11DS.
We interviewed 8 parents who had an adult child with 22q11DS and asked about their experiences, including positive and negative experiences of support; if and how they have changed; and how they expect their future will be influenced by their child and related experiences. The parents had children aged 20 – 29 years. We transcribed all the interviews verbatim, and analysed them using technique known as Interpretative Phenomenological Analysis (IPA). IPA aims to interpret how individuals make sense of their experiences as related to a particular phenomenon. Findings are grouped into “themes” that should give an impression of the people’s lives as related to the subject being studied; in this case, parenting a child with 22q11DS. Overall, we found a theme Losing “I” Finding “self” which overarched six smaller themes:
Prior to the diagnosis, stigma invades the participants’ lives because not knowing leaves them the target of judgement, or victims of indifferent professionals.
“They were very critical as to what I did or what I ate during my pregnancy or what medication I took . . . they make you feel really uncomfortable.”
2. Where is “I”
Participants lose themselves in the management of their child’s health, behaviour, and needs. There is no respite from their caregiving role, and as such, relationships with family and friends change.
“You’ve just got to keep on looking after your family. You do not get time out, you do not get any super answers, or anything like that.”
3. Conflicting loss, grief, and guilt
The participants reflect on the life that could have been without 22q11DS and mourn each milestone that should have passed.
“I think, if you just had these few bits of chromosome, a few bits of DNA, you’d probably be something really extraordinary. And it’s sad.”
4. Angry advocacy
Participants constantly fight the layers of obstruction and lack of awareness of the syndrome to receive the care their child needs.
“There’s a huge range of symptoms . . . so where are we? Dunno . . .What’s the prognosis? Dunno. What causes it? Dunno . . . What do we do now? Dunno. What happens in the long term? Well, a few develop schizophrenia . . . So how can we tell? You cannot. You do not know until you get there.”
5. Pragmatic acceptance
Participants reach an uneasy peace with the ambiguity of their child’s future. They re-evaluate their expectations and learn to celebrate success for their child.
“There’ll be a few more bumps. I’m not too concerned, although I really have no idea what the future brings, so . . . definitely say a lot of Hail Marys . . . it’s got me this far, I’m sure it’ll get me through a few more years.”
6. Finding authenticity and purpose
Participants experience psychological growth; a positive change in psychological functioning, such as finding new meaning. They show empathy, humility, gratitude, and pride as a result of their experiences.
“I’ve had the big transformation. I’m really pleased with that because looking back I do not like the mother I would have been.”
It is important to remember that these findings are not the whole experience, nor are they everyone’s experience. Rather, they give us insight so that we can conduct further research with the aim of improving the experience of parenting a child with 22q11DS. We also hope that our results can enlighten healthcare professionals in buffering against stigma, blame, and self-doubt; and help them to foster psychological well-being in parents who have a child with 22q11DS.
Full citation: “You Don’t Know Until You Get There”: The Positive and Negative “Lived” Experience of Parenting an Adult Child With 22q11.2 Deletion Syndrome. Goodwin, Jane; McCormack, Lynne; Campbell, Linda E.
Health Psychology, Sep 22 , 2016, No Pagination Specified. http://dx.doi.org/10.1037/hea0000415
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.