Family relationships and Autism Spectrum Disorder : Lived experiences of young people with autism and their families

There is a developing scholarship in health psychology in investigating family members’ perspectives on how autism impacts relationships between family members (e.g., partner/couple/spousal dyad relationships, sibling dyad relationships, parent-child dyad relationships), and the family as a unit. Research into the lived experiences of people with autism and family members remains scant and deserves attention. More notably, there is a dearth of literature of the voices of young people with autism and their lived experiences of family relationships. Without the insights generated from engaging with young people with autism and family members within a qualitative framework, it can be difficult to develop strategies for working effectively with this group. This thesis reports on a qualitative study which responds to this gap in the literature. The study investigates how autism impacts the relationships between family members, and the family as a unit. It gives a voice to young people with autism and family members, adding greater depth to the quantitative research findings presented in the literature. The study considers the perspectives of twelve mothers, twelve fathers, nine siblings, and eleven young people in families who have an autism diagnosis. A phenomenological approach supports the research in departing from the natural sciences and focuses on the phenomena or lived experience (everyday world) of an individual. The study uses encouragers and open-ended questions to engage the participants in the research and to generate rich data for storytelling from their shared and diverse experiences. Data were collected, analysed, and interpreted using several grounded theory and phenomenological data collection and analysis methods. The voices of young people with autism and their family members offer insights into how they perceive and experience autism as a way of being in the world, which is often different from others around them, influencing how they think, feel, act, and communicate. Thematic presentation of the findings highlights how family relationships were impacted by physical, emotional, and social behaviours of the young person with autism. Despite the impacts that autism had on the relationships between family members, and the family as a unit, most families in the study navigated these impacts effectively. Families achieved this when all members in the family worked together as a unit. Family members concentrated their efforts to create positive time together. This strengthened the relationships between family members, and the family as a unit. The findings from this study provide useful insights for family practitioners to structure interventions with families with a member who is a young person with autism. A conceptual framework was generated from the key study findings to indicate how autism impacts on relationships between family members, and the family as a unit. The conceptual framework offers new insights and ways of understanding the factors that have an impact. Suggestions for how the conceptual framework can be translated into practice principles and applied as a practice model for intervention with families are provided. The model can assist practitioners to reflect on the steps they could take to facilitate change in families. The model fills a gap in knowledge by providing an approach to practice for enhancing and strengthening family relationships in families with a member who is a young person with autism, a task thus far not addressed in the literature. The conceptual framework and practice model have direct relevance to practitioners working with young people with autism and their family members in a therapeutic setting. The model and accompanying strategies for practice can be used to inform assessment, case management, group work, and therapeutic work with families as well as with individual family members. It could also be used to develop group work programs, such as groups with fathers, groups with siblings, and groups with adolescents with autism

"Nowhere to go" : Investigating homelessness experiences of 12-15 year-olds in the Australian Capital Territory

[Executive Summary] Youth homelessness has been recognised as being a significant issue in Australia. Despite this, there has been little attention given to understanding how young people, especially those under 16 years of age, experience and navigate unaccompanied homelessness. A recent report on unaccompanied homeless people aged 10-17 in Tasmania highlights that, in addition to experiencing complex adversity, young people in this age group may be particularly vulnerable to policy and service provision gaps (Robinson, 2017). With an aim to better understand the issue of youth homelessness for 12-15 year olds in the Australian Capital Territory (ACT), the ACT Government’s Community Services Directorate (CSD) commissioned the Institute of Child Protection Studies (the Institute) to conduct a qualitative study. The study interviewed ten 16-19 year olds who were asked to reflect on their experience of homelessness when aged 12-15 years. The study aimed to answer the following research questions: 1. What were the factors that contributed to young people aged 12-15 years becoming homeless in Canberra, ACT? 2. What were the lived experiences of these homeless young people? 3. What were the informal and formal support and service experiences of these young people? 4. What were the needs of these young people? 5. What would help prevent young people (aged 12-15yrs) from becoming homeless? 6. How might we best provide support to young people who experience homelessness when aged between 12-15 years in Canberra? 7. Who or what helped these young people transition out of homelessness? The findings of this study highlight some common precursors and pathways into homelessness. Almost all participants in this study experienced significant adversity throughout their childhoods, often living in family homes characterised by violence, abuse and/or neglect. Half had been removed by child protection authorities into the out-of-home care system – but the young people felt this had not led to safe, stable or secure housing. As such, the majority of young people we interviewed felt like they had never had a home – a place of safety, security and happiness. Family conflict, with parents or carers, was a significant issue for the young people in this study. Alongside conflict at home, the young people we spoke to were facing a range of other challenges including: declining mental health, problems at school and feeling that no-one really understood the significance of the problems they were experiencing, or could do anything to help. With these challenges compounding, and with limited resources and minimal supports to turn to, young people felt they were left with little choice but to leave their unsafe or uncaring homes and enter into unaccompanied homelessness. Once homeless, young people felt scared and alone and had nowhere to go that could offer safe or secure housing. Young people largely relied on family or friends for short term offers of housing and other basic needs such as money and food. For over half of the participants, spending nights on the street became inevitable. Young people were connected to many formal services. However, none of these were able to meet the full range of their practical and emotional needs. Beyond access to housing or income support, which was particularly difficult for young people aged under 16yrs, young people required support with their physical and mental health and support to engage in meaningful activities (such as education or employment). Young people felt that more effective practical and emotional support could be provided if formal supporters listen carefully, take young people’s concerns seriously and use their power to advocate for young people’s needs. Effective advocacy to help young people navigate complex service systems and successfully access income and housing was particularly critical. The desire and determination for a better life had led most of the young people to leave their family homes and enter into homelessness. This determination had sustained and motivated young people whilst they experienced the many challenges associated with being homeless. At the time of their interview, some young people had achieved stable housing and were making significant caring contributions to others and/or were meaningfully engaged in work or study. Half of the young people who participated in this study, however, remained homeless. As the young people noted, there is much work to be done to help prevent and better respond to youth homelessness in the ACT. The young people who participated in this study hope their views and experiences can assist in this important work

‘Stay safe online, tell someone’ evaluation report

[Extract] Introduction Children and young people are spending more time online than ever before. In addition to other forms of abuse and harm, online abuse—including sexual abuse, grooming, sextortion, child sexual abuse (CSA) material related offenses and cyberbullying—is a concern that must be addressed. The Y developed and evaluated an adapted version of the ‘Stay Safe, Tell Someone’ program. The ‘Stay Safe Online, Tell Someone’ program was developed through adapting the existing program using data analysed from focus groups with children and young people and utilises an online/digital delivery method. The aim of the program is to increase program users’ resilience, confidence and perception of online safety, and to ensure users have the information they need to have their voices heard and to go to someone if they have concerns or worries

Effective interventions to reduce suicidal thoughts and behaviours among children in contact with child protection and out-of-home care systems – A rapid evidence review

[Extract] Aim The aim of this rapid evidence review is to outline the role played by involvement in the child protection system—including placement in OOHC—as a risk factor for suicidal behaviour. We also aim to review the effectiveness of interventions focused on OOHC for at-risk children in reducing suicidal thoughts, suicide attempts and suicide deaths. The National Suicide Prevention Taskforce, through the Suicide Prevention Research Fund managed by Suicide Prevention Australia, commissioned the Institute of Child Protection Studies at Australian Catholic University to conduct this review of the literature. We aimed to answer the following research questions: 1. What role do risk factors associated with childhood trauma and interactions with the child protection and out-of-home system play in suicidal behaviour? 2. What interventions have been shown to be effective in reducing suicidal thoughts and behaviours among children involved in the out-of-home care system? 3. What recommendations could be made about interventions that may be most appropriate and feasible within the Australian context

Family foundations outcome evaluation

[Executive Summary] The ACT Community Services Directorate (CSD) commissioned the ACU Institute of Child Protection Studies (ICPS) to conduct a process and outcome evaluation of Family Foundations. CSD, a government agency responsible for various human services functions in the ACT, funds the Belconnen Community Service to deliver Family Foundations. Family Foundations is an early intervention therapeutic program designed to promote strong, secure and healthy relationships between children aged 0-5 years and their parents/carers. ICPS evaluators finalised the process evaluation in February 2018. It assessed the extent to which Family Foundations had been implemented as intended (see Barker, Thorpe and McArthur, 2018). The outcome evaluation assessed the extent to which Family Foundations achieved intended outcomes. It involved a mixed methods approach. This approach involved collecting, analysing and interpreting qualitative and quantitative data to address the key evaluation questions. The available evidence suggested that Family Foundations enhanced parenting capacity and contributed to improved outcomes for children. Changes in parenting capacity were evident in the test scores for quantitative outcome tools and the qualitative accounts of parents, practitioners and stakeholders. Test scores typically showed small, but statistically significant, improvements post-program participation. Parents, practitioners and stakeholders provided rich descriptions of how participating in Family Foundations had developed parenting knowledge and skills and improved parents’ sense of self-confidence in their ability to meet their child’s needs. Most parents noted an improved ability to recognise and manage their emotions when caring for their child. Parents and practitioners reported improvements in the emotional regulation and behavioural outcomes of their children. Parental participation in Family Foundations also appeared to have enhanced the quality of the parent-child attachment. ICPS evaluators identified an unintended consequence for one parent who had participated in the program. This parent exited Family Foundations with lasting feelings of distress. While unfortunate, this experience appeared to be a consequence of the practitioner acting in the interests of the child. Available evidence suggested that program staff adopted process to keep the focus on the child and supported parents to understand the importance of this focus even in the event it may cause the parent discomfort. A significant implication of the evaluation relates to whether Family Foundations reached the ‘right’ parents. Many parents entered Family Foundations with pre-program test scores that fell in the moderate band. While these families experienced improvements, the change was small. Yet, when the program engaged parent who demonstrated high need at the point of entry, the change in test scores post-program participation was more substantial than for parents with low to moderate parenting need. The important message here is that Family Foundations appeared to produce the most significant result for parents in greater need. ICPS evaluators recommend further reflection on whether BCS is appropriately set up to deliver ‘blended prevention’ (Prinz, 2015) – combining universal and targeted parenting supports in an integrated strategy

New ways for our families : Designing an Aboriginal and Torres Strait Islander cultural practice framework and system responses to address the impacts of domestic and family violence on children and young people

Little has been done to understand what works to support First Nations children and young people to heal from their experiences of violence. This research project explores how services and systems can better respond to the needs of Aboriginal and Torres Strait Islander children and young people exposed to DFV who come to the attention of child protection systems. Led by the Queensland Aboriginal and Torres Strait Islander Child Protection Peak (QATSICPP), a team of First Nations researchers, supported by non-Indigenous researchers, utilised a participatory action research methodology – ensuring cultural safety and adherence to cultural values and protocols, including co-creation of knowledge. This report, the first in a series for this project, presents the results of a literature review and the findings from the initial cycles of action research conducted with Aboriginal and Torres Strait Islander chief investigators, community researchers and practitioners working in eight community-controlled child and family services across Queensland. The literature review and the outcomes of the initial action research cycle confirmed that the experience of DFV in childhood is resulting in negative lifelong outcomes for First Nations children, including increased interactions with the child protection and justice systems. The researchers also found that these responses (child protection and justice) are not adequate or culturally safe. To support healing for these children and young people, the report recommends: • holistic healing opportunities • culturally strong and community-led whole-of-family support • therapeutic healing circles and camps • connection to and knowledge about traditional cultural values, systems and traditions • a framework of perpetrator accountability • system changes include procuring place-based and healing responses for Aboriginal and Torres Strait Islander community-controlled services that support self-determination, and working collectively with the whole family. Additionally, cultural capability across the service system needs to be enhanced, and structural racism needs to be eliminated in order to reduce the load on existing Aboriginal and Torres Strait Islander services. Future publications from this research project, due in 2022, will consist of a research report on the remaining action research cycles and a framework for working with Aboriginal and Torres Strait Islander children and young people who have experienced DFV and have also come in contact with the child protection system

Evaluation of appendicitis risk prediction models in adults with suspected appendicitis

Background Appendicitis is the most common general surgical emergency worldwide, but its diagnosis remains challenging. The aim of this study was to determine whether existing risk prediction models can reliably identify patients presenting to hospital in the UK with acute right iliac fossa (RIF) pain who are at low risk of appendicitis. Methods A systematic search was completed to identify all existing appendicitis risk prediction models. Models were validated using UK data from an international prospective cohort study that captured consecutive patients aged 16–45 years presenting to hospital with acute RIF in March to June 2017. The main outcome was best achievable model specificity (proportion of patients who did not have appendicitis correctly classified as low risk) whilst maintaining a failure rate below 5 per cent (proportion of patients identified as low risk who actually had appendicitis). Results Some 5345 patients across 154 UK hospitals were identified, of which two‐thirds (3613 of 5345, 67·6 per cent) were women. Women were more than twice as likely to undergo surgery with removal of a histologically normal appendix (272 of 964, 28·2 per cent) than men (120 of 993, 12·1 per cent) (relative risk 2·33, 95 per cent c.i. 1·92 to 2·84; P < 0·001). Of 15 validated risk prediction models, the Adult Appendicitis Score performed best (cut‐off score 8 or less, specificity 63·1 per cent, failure rate 3·7 per cent). The Appendicitis Inflammatory Response Score performed best for men (cut‐off score 2 or less, specificity 24·7 per cent, failure rate 2·4 per cent). Conclusion Women in the UK had a disproportionate risk of admission without surgical intervention and had high rates of normal appendicectomy. Risk prediction models to support shared decision‐making by identifying adults in the UK at low risk of appendicitis were identified

Vulnerable yet forgotten? A systematic review identifying the lack of evidence for effective suicide interventions for young people in contact with child protection systems

Children and young people in out-of-home care are at a higher risk of suicide than young people not involved with child protection systems. Despite this, there is a lack of evidence of effective suicide prevention interventions for this vulnerable population. We reviewed the types of suicide prevention interventions that have been used and evaluated with children and young people and staff and carers in out-of-home care/child protection systems. We conducted a systematic review of existing literature using PRISMA guidelines. Only five studies met the inclusion criteria. Two evaluated youth-focused interventions: emotional intelligence therapy; and multidimensional treatment foster care, while three evaluated adult-focused “gatekeeper training.” Youth-focused interventions led to reductions in suicidal thoughts (suicidal ideation), and adult-focused interventions led to increased knowledge, skills, and behaviors such as referring youth to supports. Only one study, one of the youth-focused ones, evaluated the impact of the intervention in terms of suicide attempts but found no reduction. Large numbers of children enter into care with a high risk of suicide. With the considerable overlap between the trauma characteristics and mental health needs of young people in out-of-home care and suicide risk factors in the general population of young people, we recommend developing (and evaluating) new or adapted existing suicide prevention interventions designed specifically for the out-of-home care context

Effective delivery methods and teaching strategies for child sexual abuse prevention: A rapid evidence check

The project reviewed evidence of effective teaching strategies for child sexual abuse prevention programs for children in preschool and the early years of primary school aged 2 to 8 years. The aim was to enhance understandings of effective: • Content: subject matter, ideas or themes shown as effective in improving children’s protective behaviours and knowledge about sexual abuse prevention • Methods: instructional techniques demonstrated to help children learn the desired content (e.g., rehearsal, modelling) • Delivery modes: proven ways of delivering content to best support and enable learning of preschoolers and children in the early primary school years.<br/

Parents' experiences with child protection during pregnancy and post‐birth

Limited research has directly sought the input of parents involved in the child protection system during pregnancy and with their infants. As the focus of these policies and practices, parents have a unique and important insight not available to others, so it is vital to obtain their input. As part of a larger Australian study, qualitative interviews were undertaken with 13 parents asking about their views and experiences. Parents predominantly became involved with child protection services during pregnancy through a prenatal report. Parents who previously had their newborn removed from their care described it as sudden and unexpected, leaving them distressed and unsupported post‐removal, with a growing list of requirements for them to see their baby or for restoration to be considered. Domestic violence was a particular issue of concern for some mothers who expressed distress that their partners, perpetrators of violence, were allowed access to their infant with fewer requirements than for them. Improvements recommended by the parents included greater communication and preparation for the removal, better recognition of improvements in their situations and increased supports to be provided to parents both pre‐ and post‐removal. Parental experiences provide an important guide to improving child protection practice with these families