Could I, should I? Parenting aspirations and personal considerations of five young women with 22q11.2 deletion syndrome
Miss Lisa Phillips is a Clinical Psychologist who did her Masters of Clinical Psychology at the University of Newcastle in Australia with Dr Linda Campbell and Dr Martin Johnson from the School of Psychology. Recently her Masters research was published in collaboration with Miss Jane Goodwin. Read a brief summary here and if you want to read more, the article was recently made available online through Journal of Intellectual and Developmental Disability, go to http://bit.ly/2egsx0G
Establishing relationships and considering parenthood can present both challenges and joys for any young adult. However, young people with an intellectual disability (ID) can encounter extra obstacles on the road to achieving their aspirations. This phenomenological study explores the perceptions, hopes, and dreams of relationships and parenting of women with a genetic intellectual disability, 22q11.2 deletion syndrome.
The 22q11.2 deletion syndrome (22q11DS; also known as Velo-cardio-facial syndrome) is one of the most common genetic syndromes and occurs in at least 1 in 4,000 births although a recent study that the syndrome may be as common as 1 in 992 live births. The syndrome is associated with a range of physical problems including cardiac and palatal anomalies, low muscle tone and poor immune system. The syndrome is also associated with intellectual disabilities or learning problems and mental health problems. However, there is a large variability between different people with the syndrome which means that some people have very mild symptoms and others much more severe problems.
In this study we interviewed five women with both 22q11.2 deletion syndrome (22q11DS) and intellectual disability. All the interviews were transcribed verbatim and their subjective interpretations were then analysed using a qualitative methodology known as Interpretative Phenomenological Analysis (IPA). IPA offer insights into how a given person, in a given context, makes sense of a given phenomenon, so in this instance we were wondering how young women with 22q11DS made sense of their ideas of hope for the future, relationships and parenthood.
After significant analysis four main themes emerged from the interviews, that is patterns in the data that was shared between the participants: (a) challenges and acceptance of having 22q11DS, (b) desire for social acceptance and normality, (c) welcoming of emotional and practical support, and (d) individuation. The themes describe the discordance between the challenges and acceptance of having a genetic disorder, the need to be “normal,” the importance and appreciation of social support, and the women’s aspirations for independence.
Overall, the conclusions from the study highlight that these young women with 22q11DS approaches their adulthood with a sense of optimism and personal competence yet recognise their unique challenges. Parental support is valued despite the need for independence. The findings provide insight into the lived experience of women with 22q11DS.
Citation: Phillips, L., Goodwin, J., Johnson, M. P., & Campbell, L. E. (2016). Could I, should I? Parenting aspirations and personal considerations of five young women with 22q11. 2 deletion syndrome. Journal of Intellectual & Developmental Disability, 1-11.
The experiences of women who have accessed a perinatal and infant mental health service: a qualitative investigation
Eliza Davis recently graduated with a Master of Clinical Psychology from the University of Newcastle. She undertook her research with Dominiek Coates and Linda Campbell at the Perinatal Infant Mental Health (PIMH) service in Gosford. The research was recently made available online. Read a brief summary here and if you want to read more the article was recently made available online through Advances in Mental Health, go to http://bit.ly/2dZ6D6K
Client feedback is an essential part of service evaluation and can aid both the development and delivery of client-centred services. The current study is an investigation into the experiences of women who have accessed a perinatal infant mental health (PIMH) service that was carried out by Dominiek Coates, Eliza Davis and Linda Campbell. The purpose of the perinatal infant mental health (PIMH) service in Gosford, Central Coast (Australia) is to support vulnerable women to connect with and care for their infant, however it is not well understood how effectively the service supports the needs of the consumers.
We invited one hundred and seventy-six women who were discharged from the service within the past 36 months to participate in the study. Forty of the discharged consumers were able to participate in a semi-structured telephone interview. All the interviews were transcribed verbatim and interpreted using a qualitative methodology known as thematic analysis. A thematic analysis one of the most common forms of analysis in qualitative research and briefly mean that the researchers carefully read and re-read the transcripts of the data. During that process the researchers get increasingly familiar with the data, they generate codes for the different aspects of the interviews and look for themes, that is patterns within the data that allows a description of a phenomenon that is related to the research question.
We identified one superordinate (or overarching) theme in the interviews with the participants. More specifically, the participants talked about the service as a ‘Lifesaver’ and four subordinate themes describing the way in which the service met the needs of the participants were identified. The participants talked about the service in a way that identified themes such as supportive counselling, trauma counselling, specialist interventions and assertive outreach. Overall, it was found that trusting therapeutic relationships with a regular clinician facilitated a safe environment conducive to counselling, which allowed for reflections on trauma, mental health and parenting. Implications: Findings from this study highlight the positive impact of PIMH services on consumers with a particular emphasis on the importance of the consumer–clinician relationship. Importantly, it was also found that dealing with past trauma was critically important for the women to enable them to move on with their lives as mothers.
The psychological wellbeing of parents and foster carers: The role of self-efficacy and challenging behaviours
Emily McCaffery was a student in the Masters of Clinical Psychology program. She completed her research in 2013 under the supervision of Dr Campbell and Associate Professor Juanita Todd. Emily was particularly interested in foster carer mental health and wellbeing. Below you can read a brief summary of the outcomes below.
Parental self-efficacy refers to the belief in one’s competence and effectiveness in managing a range of tasks and situations relating to parenting. Past research has demonstrated that parenting self-efficacy can have an impact on psychological wellbeing and also parenting behaviours. More specifally, it has been suggested that when a parent believe in their own ability to parent well, they are more effective in managing challenging behaviours (from the children in their care) as well as being better able to modulate their own stress levels. Foster parenting and biological parenting are significantly different tasks with foster carers experiencing a range of stressors that regular parents are not typically exposed to. An understanding of the impact of parenting self-efficacy on parental psychological wellbeing and in managing parenting stressors is important in developing and implementing appropriate supports for foster carers.
The current study was conducted to extend existing knowledge relating to the role of self-efficacy in the psychological wellbeing of foster carers and subsequently how best to support them in caring for children in foster care. A total of 68 parents and 68 foster carers were recruited from foster care agencies and support groups in NSW and Victoria, parent support groups, social networking, and the University of Newcastle. Participants completed an online survey which asked questions about parenting stress, emotional wellbeing, challenging behaviours displayed by children in their care and demographic information.
The results of this survey showed no significant differences between foster carers and regular parents for symptoms of depression, anxiety, self-efficacy or parent distress. This result was unexpected due to the different types and levels of stress typically experienced by foster carers and parents. However, what we did find was that foster carers reported much higher levels of child challenging behaviours. It was also apparent that the child/ren in their care required more intense levels of care due to behavioural or medical conditions.
Overall, regardless of being a biological parent or a foster carer, higher levels of parental self-efficacy was associated with better psychological wellbeing and with lower levels of challenging behaviour from the child. These findings suggest that parenting self-efficacy is a protective factor in managing stressful situations and maintaining good psychological wellbeing. These findings may be useful in developing and implementing appropriate support and training for foster carers and parents in managing parenting stressors.
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.