Family-focused weight management program for five- to nine-year-olds incorporating parenting skills training with healthy lifestyle information to support behaviour modification

his case study aims to describe how general parenting principles can be used as part of parent-led, family-focused child weight management that is in line with current Australian Clinical Practice Guidelines. A parent-led, family-focused child weight management program was designed for use by dietitians with parents of young children (five- to nine-year-olds). The program utilises the cornerstones of overweight treatment: diet, activity, behaviour modification and family support delivered in an age-appropriate, family-focused manner. Parents participate in 16 sessions (4 parenting-focused, 8 lifestyle-focused and 4 individual telephone support calls) conducted weekly, fortnightly then monthly over six months. This case study illustrates how a family used the program, resulting in reduced degree of overweight and stabilised waist circumference in the child over 12 months. In conclusion, linking parenting skills to healthy family lifestyle education provides an innovative approach to family-focused child weight management. It addresses key Australian Clinical Practice Guidelines, works at the family level, and provides a means for dietitians to easily adopt age-appropriate behaviour modification as part of their practice.

The effectiveness of a short-term group music therapy intervention for parents who have a child with a disability

The relationship between the quality of parent-child interactions and positive child developmental trajectories is well established (Guralnick, 2006; Shonkoff & Meissels, 2000; Zubrick et al., 2008). However, a range of parental, family, and socio-economic factors can pose risks to parents’ capacity to participate in quality interactions with their children. In particular, families with a child with a disability have been found to have higher levels of parenting stress, and are more likely to experience economic disadvantage, as well as social isolation. The importance of early interventions to promote positive parenting and child development for these families is widely recognised (Shonkoff & Meissels, 2000). However, to date, there is a lack of evidence about the effectiveness of early parenting programs for families who have a young child with a disability. This thesis investigates the impact of a music therapy parenting program, Sing & Grow, on 201 parent-child dyads who attended programs specifically targeted to parents who had a young child with a disability. Sing & Grow is an Australian national early parenting intervention funded by the Australian Government Department of Families, Housing, Community Services and Indigenous Affairs and delivered by Playgroup Queensland. It is designed and delivered by Registered Music Therapists for families with children aged from birth to three years. It aims to improve parenting skills and confidence, improve family functioning (positive parent-child interactions), enhance child development, and provide social networking opportunities to socially isolated families. The intervention targets a range of families in circumstances that have the potential to impact negatively on family functioning. This thesis uses data from the National Evaluation Study of Sing & Grow from programs which were targeted at families who had a young child with a disability. Three studies were conducted to address the objectives of this thesis. Study 1 examines the effects of the Sing & Grow intervention on parent reported pre and post parent mental health, parenting confidence, parenting skills, and child development, and other parent reported outcomes including social support, use of intervention resources, satisfaction with the intervention and perceived benefits of and barriers to participation. Significant improvements from pre to post were found for parent mental health and parent reported child communication and social skills, along with evidence that parents were very satisfied with the program and that it brought social benefits to families. Study 2 explored the pre to post effects of the intervention on children’s developmental skills and parent-child interactions using observational ratings made by clinicians. Significant pre to post improvements were found for parenting sensitivity, parental engagement with child and acceptance of child as well as for child responsiveness to parent, interest, and participation in the intervention, and social skills. Study 3 examined the nature of child and family characteristics that predicted better outcomes for families while taking account of the level of participation in the program. An overall outcome index was calculated and served as the dependent variable in a logistic regression analysis. Families who attended six or more sessions and mothers who had not completed high school were more likely to have higher outcome scores at post intervention than those who attended fewer sessions and those with more educated mothers respectively. The findings of this research indicate that the intervention had a positive impact on participants’ mental health, parenting behaviours and child development and that level of attendance was associated with better outcomes. There was also evidence that the program reached its target of high risk families (i.e., families in which mothers had lower educational levels) and that for these families better outcomes were achieved. There were also indications that the program was accessible and highly regarded by families and that it promoted social connections for participants. A theoretical model of how the intervention is currently working for families is proposed to explain the connections between early parenting, child development and maternal wellbeing. However, more research is required to further elucidate the mechanisms by which the intervention creates change for families. This research presents promising evidence that a short term group music therapy program can elicit important therapeutic benefits for families who have a child with a disability.

Child participation in the early years : challenges for education

The view that children should have a say in and participate in the decision-making of, matters that affect them is now an accepted position when considering research and policy in the early years. This paper reviews the field of child participation in the Australian context to show that, despite growing evidence of support within policy and research arenas, young children’s participation rights in Australia have not been key agenda items for early childhood education. While a significant part of children’s daily experience takes place in classrooms, the actual practices of engaging young children as participants in everyday activities remains a challenge for early childhood education. Participation is an interactional process that involves managing relationships between children and adults. Recommendations include further research into the daily experiences of young children to show what participation might look like when translated to the everyday activities of the classroom and playground.

The First Steps Program : a case study of a new model of community child health service

Community Child Health Nursing Services provide support for new mothers; however, the focus has often been on individual consultations, complemented by a series of group sessions soon after birth. We describe a new model of community care for first-time mothers that centres on group sessions throughout the whole contact period. The model was developed by practicing child health nurses for a large health service district in south-east Queensland, which offers a comprehensive community child health service. Issues identified by clinicians working within existing services, feedback from clients and the need for more resource-efficient methods of service provision underpinned the development of the model. The pilot program was implemented in two community child health centres in Brisbane. An early individual consultation to engage the family with the service was added in response to feedback from clinicians and clients. The modified model has since been implemented service-wide as the ‘First Steps Program’. The introduction of this model has ensured that the service has been able to retain a comprehensive service for first-time parents from a universal population, while responding to the challenges of population growth and the increasing number of complex clients placing demands on resources.

Using routinely collected hospital data for child maltreatment surveillance : issues, methods and patterns

Background: International data on child maltreatment are largely derived from child protection agencies, and predominantly report only substantiated cases of child maltreatment. This approach underestimates the incidence of maltreatment and makes inter-jurisdictional comparisons difficult. There has been a growing recognition of the importance of health professionals in identifying, documenting and reporting suspected child maltreatment. This study aimed to describe the issues around case identification using coded morbidity data, outline methods for selecting and grouping relevant codes, and illustrate patterns of maltreatment identified. Methods: A comprehensive review of the ICD-10-AM classification system was undertaken, including review of index terms, a free text search of tabular volumes, and a review of coding standards pertaining to child maltreatment coding. Identified codes were further categorised into maltreatment types including physical abuse, sexual abuse, emotional or psychological abuse, and neglect. Using these code groupings, one year of Australian hospitalisation data for children under 18 years of age was examined to quantify the proportion of patients identified and to explore the characteristics of cases assigned maltreatment-related codes. Results: Less than 0.5% of children hospitalised in Australia between 2005 and 2006 had a maltreatment code assigned, almost 4% of children with a principal diagnosis of a mental and behavioural disorder and over 1% of children with an injury or poisoning as the principal diagnosis had a maltreatment code assigned. The patterns of children assigned with definitive T74 codes varied by sex and age group. For males selected as having a maltreatment-related presentation, physical abuse was most commonly coded (62.6% of maltreatment cases) while for females selected as having a maltreatment-related presentation, sexual abuse was the most commonly assigned form of maltreatment (52.9% of maltreatment cases). Conclusion: This study has demonstrated that hospital data could provide valuable information for routine monitoring and surveillance of child maltreatment, even in the absence of population-based linked data sources. With national and international calls for a public health response to child maltreatment, better understanding of, investment in and utilisation of our core national routinely collected data sources will enhance the evidence-base needed to support an appropriate response to children at risk.

Children of substance-using mothers : child health engagement and child protection outcomes

Aim: Maternal substance use has been associated with a range of child risk factors. The study investigated the relationship between engagement with child health services and child protection outcomes for children of substance using mothers. ----- ----- Methods: A sample of 119 children of mothers who disclosed opiate, amphetamine or methadone use during a maternity admission between 2000 and 2003, as included in a previous matched co-hort study1, were included in the current study. Statutory child protection agency and child health engagement information for the first two years of life, was obtained. The relationship between type of maternal substance use, child health engagement and child protection outcomes was examined. ----- ----- Results: Seventy two percent of study group infants were engaged with child health services during the first two years of life. Chi square analysis showed no significant relationship between child health engagement and child protection reports. Child health engagement was associated with decreased substantiated child protection notifications for children of methadone using mothers, but not for children of illicit substance users. ----- ----- Conclusions: Almost a quarter of identified children of substance using mothers are not accessing standard child health services in their first two years of life. This study provides support for increased attention to the provision of child health services for children of methadone using mothers. Further research into effective intervention strategies for children of illicit substance using mothers is indicated.

Parent decisions regarding paid work and care of the child

Australia has witnessed a continual increase in maternal employment over the past two decades, which has placed focus on child care- its effects on the child and on early childhood education and care policy and provision. The engagement of women in the paid workforce contributes to national economic development, and is recognised in government policy incentives such as cash subsidies and tax relief for child care fees. These incentives are targeted towards mothers, to encourage them to engage in paid work. Making a contribution to the family’s economy and to a mother’s economic self sufficiency are two key drivers for women’s engagement in satisfying paid work. Many women also seek to maintain a personal investment in the development of their career, simultaneously ensuring that the child is experiencing suitable care. Policies that support women’s choices for satisfying workforce engagement and care arrangements are prudent for ensuring productivity of the economy as well as for enhancing the wellbeing of parents and children (OECD, 2007). Policies that provide family friendly employment arrangements, paid parental leave, and child care support, directly affect maternal employment decisions. Availability of family friendly employment policies is viewed as one way to not only promote gender equity in employment opportunities but also support the wellbeing of children and families (OECD, 2007). Yet there are not comprehensive and coherent policies on work and family in Australia. Australia is due to implement its first paid parental leave scheme in January, 2011. At the time of the data collection of this research, June 2007 to December 2008, Australia had no statutory provision for paid parental leave. To date, most research has focused on the consequences of paid work and care decisions made by women. Far less is known about the processes of decision-making and reasons underlying women’s choices. Investigation of what is most salient for women as they make decisions regarding engagement in paid work, and care for their child is important in order to inform policy and practices related to parental leave, family friendly employment and care for the child. This prospective longitudinal research was of 124 Australian expectant first-time mothers who completed questionnaires in their third trimester of pregnancy, and again at six and twelve months postpartum. First-time expectant mothers' decisions regarding engaging in paid work and selecting care for their child represent those of a group who are invested in motherhood and have usually had direct experience of engaging in paid work. They therefore provide an important insight into society’s idealised views about motherhood and the emotional and social uncertainty of making personal decisions where the consequences of such decisions are unknown. These decisions reflect public beliefs about the role of women in contributing to the country’s productivity and decisions about providing for the economic and emotional care needs of their family. As so little is known about the reasoning and processes of decision-making of women’s choices regarding paid work and care of the child this research was designed to capture expectant first-time mother’s preferred options for engaging in paid work and the care of their child, and investigate their actual decisions made at six and 12 months postpartum. To capture preferred options, decisions and outcomes of decisions regarding paid work and care of the child a prospective longitudinal research design was utilised. This design had three important components that addressed key limitations in the extant literature. First the research commenced in pregnancy in order to investigate preferences and beliefs about paid work and care and to examine baseline data that may influence decisions made as the women returned to paid work. Second the research involved longitudinal tracking from the antenatal time point to six and 12 months postpartum in order to identify the influences on decisions made. Third the research measured outcomes of the decisions made at each time point. This research examined the intentions, preferences, beliefs, influences, and outcomes of the decisions about engagement in paid work and choice of care. The analyses examined factors predicting return to paid work, the timing of return and extent of engagement in paid work; the care for the child; satisfaction with paid work; satisfaction with care for the child, motherhood and fulfilment; and maternal wellbeing at six and 12 months postpartum. The factors of interest were both rational/economic (availability and extent of paid and unpaid maternity leave; flexible work patterns) and emotional/affective (career satisfaction, investment in motherhood, and concern with quality of care for the child). Results indicated a group preference, and realisation for, return to paid work within the first year after the birth of a child but with reduction in hours to part-time. Most women saw paid work not only as a source of income but also as source of personal satisfaction. There were four key themes arising from this research. First, the women strived to feel emotionally secure when deciding about engaging in paid work and care of the child. To achieve emotional security women made their decisions for paid work and care of the child differently. A woman’s decision for maternal employment is a function of her personal beliefs, preferences and context regarding paid work and care of the child. She adjusts her established work identity with her new identity as a mother. The second key theme from this research is that the women made their decisions for maternal employment in response to their personal context and there were different levels of opportunities between the women’s choices. There is inequity of entitlement regarding work conditions associated with a woman’s education level. This has implications for the woman’s engagement in paid work, and her child’s health and wellbeing. The third key theme is that the quality of the child’s care mattered to the women in the research. They preferred care provided by parents and/or relatives more than any other types of care. The fourth key theme identified that satisfaction and wellbeing outcomes experienced as a result of maternal employment decisions were a complex interaction between multiple factors that change across time with the ongoing development of the mother’s identity, and the development of the child. The implications for policy within Australia are that the employment of mothers in the workforce necessitates that non-parental care becomes a public concern, where there is universal access to good quality affordable care for every child, not just for those who can afford it. This is equitable and represents real choice while supporting the rights of the child (Thorpe, Cloney & Tayler, 2010), protecting and promoting the public interest (Cleveland & Krashinsky, 2010). Children’s health and wellbeing will be supported (Moore & Oberklaid, 2010) while children are in non-parental care, and they will be exposed to environments and experiences that support their learning and development. The significant design of the research enabled the trajectories of first-time expectant women to be tracked from the antenatal point to 12 months postpartum. But there were limitations: the small sample size, the over-representation of the sample being highly educated and the nature of a longitudinal research that is set within the economic, social and political context at that time. These limitations are discussed in relation to suggestions for future research.

Investigating the cost-effectiveness of video telephone based support for newly diagnosed paediatric oncology patients and their families: design of a randomised controlled trial

Background Providing ongoing family centred support is an integral part of childhood cancer care. For families living in regional and remote areas, opportunities to receive specialist support are limited by the availability of health care professionals and accessibility, which is often reduced due to distance, time, cost and transport. The primary aim of this work is to investigate the cost-effectiveness of videotelephony to support regional and remote families returning home for the first time with a child newly diagnosed with cancer Methods/design We will recruit 162 paediatric oncology patients and their families to a single centre randomised controlled trial. Patients from regional and remote areas, classified by Accessibility/Remoteness Index of Australia (ARIA+) greater than 0.2, will be randomised to a videotelephone support intervention or a usual support control group. Metropolitan families (ARIA+ ≤ 0.2) will be recruited as an additional usual support control group. Families allocated to the videotelephone support intervention will have access to usual support plus education, communication, counselling and monitoring with specialist multidisciplinary team members via a videotelephone service for a 12-week period following first discharge home. Families in the usual support control group will receive standard care i.e., specialist multidisciplinary team members provide support either face-to-face during inpatient stays, outpatient clinic visits or home visits, or via telephone for families who live far away from the hospital. The primary outcome measure is parental health related quality of life as measured using the Medical Outcome Survey (MOS) Short Form SF-12 measured at baseline, 4 weeks, 8 weeks and 12 weeks. The secondary outcome measures are: parental informational and emotional support; parental perceived stress, parent reported patient quality of life and parent reported sibling quality of life, parental satisfaction with care, cost of providing improved support, health care utilisation and financial burden for families. Discussion This investigation will establish the feasibility, acceptability and cost-effectiveness of using videotelephony to improve the clinical and psychosocial support provided to regional and remote paediatric oncology patients and their families.

Evaluating parent-child group music therapy programmes: challenges and successes for Sing & Grow

Sing & Grow is an early intervention music therapy programme for families with children from birth to 3 years of age, who are socially, economically, or physically disadvantaged. It aims to improve parenting skills and confidence, promote positive parent–child interactions, stimulate child development, and provide social networking opportunities. Music and song activities are used in a therapeutic context to enhance parenting skills, improve parent–child interactions, provide essential developmental stimulation for children, promote social support for parenting, and strengthen links between parents and community services.

Sh-h-h-h : representations of perpetrators of sexual child abuse in picturebooks

Children’s picturebooks dealing with the topic of child sexual abuse first appeared in the early 1980s with the aim of addressing the need for age-appropriate texts to teach sexual abuse prevention concepts and to provide support for young children who may be at risk of or have already experienced sexual abuse. Despite the apparent potential of children’s picturebooks to convey child sexual abuse prevention concepts, very few studies have addressed the topic of child sexual abuse in children’s literature. Based on a larger study of 60 picturebooks about sexual child abuse published over the past 25 years, this paper critically examines eight picturebook representations of the perpetrators of sexual child abuse as a way to understand how potentially dangerous adults are explained to the young readers of these texts.

Managing medical advice seeking in calls to Child Health Line

Child Health Line is a 24-hour Australian helpline that offers information and support for parents and families on child development and parenting. The helpline guidelines suggest that nurses should not offer medical advice, however they regularly receive calls seeking such advice. This paper examines how the service guidelines are talked into being through the nurses’ management of caller’s requests for medical advice and information, and shows how nurses orient to the boundaries of their professional role and institutionally regulated authority. Three ways in which the child health nurses manage medical advice and information seeking are discussed: using membership as a nurse to establish boundaries of expertise, privileging parental authority regarding decision making about seeking treatment for their child, and respecifying a ‘medical’ problem as a child development issue. The paper contributes to research on medical authority, and nurse authority in particular, by demonstrating the impact of institutional roles and guidelines on displays of knowledge and expertise. More generally, it contributes to an understanding of the interactional enactment and consequences of service guidelines for telehealth practice, with implications for training, policy and service delivery.

Caregiving experience and its influencing factors : rural versus urban adult-child caregivers caring for parents with dementia in China

Background: It is predicted that China will have the largest number of cases of dementia in the world by 2025 (Ferri et al., 2005). Research has demonstrated that caring for family members with dementia can be a long-term, burdensome activity resulting in physical and emotional distress and impairment (Pinquart & Sorensen, 2003b). The establishment of family caregiver supportive services in China can be considered urgent; and the knowledge of the caregiving experience and related influencing factors is necessary to inform such services. Nevertheless, in the context of rapid demographic and socioeconomic change, the impact of caregiving for rural and urban Chinese adult-child caregivers may be different, and different needs in supportive services may therefore be expected. Objectives: The aims of this research were 1) to examine the potential differences existing in the caregiving experience between rural and urban adult-child caregivers caring for parents with dementia in China; and 2) to examine the potential differences existing in the influencing factors of the caregiving experience for rural as compared with urban adult-child caregivers caring for parents with dementia in China. Based on the literature review and Kramer.s (1997) caregiver adaptation model, six concepts and their relationships of caregiving experience were studied: severity of the care receivers. dementia, caregivers. appraisal of role strain and role gain, negative and positive well-being outcomes, and health related quality of life. Furthermore, four influencing factors (i.e., filial piety, social support, resilience, and personal mastery) were studied respectively. Methods: A cross-sectional, comparative design was used to achieve the aims of the study. A questionnaire, which was designed based on the literature review and on Kramer.s (1997) caregiver adaptation model, was completed by 401 adult-child caregivers caring for their parents with dementia from the mental health outpatient departments in five hospitals in the Yunnan province, P.R. China. Structural equation modelling (SEM) was employed as the main statistical technique for data analyses. Other statistical techniques (e.g., t-tests and Chi-Square tests) were also conducted to compare the demographic characteristics and the measured variables between rural and urban groups. Results: For the first research aim, the results indicated that urban adult-child caregivers in China experienced significantly greater strain and negative well-being outcomes than their rural peers; whereas, the difference on the appraisal of role gain and positive outcomes was nonsignificant between the two groups. The results also indicated that the amounts of severity of care receivers. dementia and caregivers. health related quality of life do not have the same meanings between the two groups. Thus, the levels of these two concepts were not comparable between the rural and urban groups in this study. Moreover, the results also demonstrated that the negative direct effect of gain on negative outcomes in urban caregivers was stronger than that in rural caregivers, suggesting that the urban caregivers tended to use appraisal of role gain to protect themselves from negative well-being outcomes to a greater extent. In addition, the unexplained variance in strain in the urban group was significantly more than that in the rural group, suggesting that there were other unmeasured variables besides the severity of care receivers. dementia which would predict strain in urban caregivers compared with their rural peers. For the second research aim, the results demonstrated that rural adult-child caregivers reported a significantly higher level of filial piety and more social support than their urban counterparts, although the two groups did not significantly differ on the levels of their resilience and personal mastery. Furthermore, although the mediation effects of these four influencing factors on both positive and negative aspects remained constant across rural and urban adult-child caregivers, urban caregivers tended to be more effective in using personal mastery to protect themselves from role strain than rural caregivers, which in turn protects them more from the negative well-being outcomes than was the case with their rural peers. Conclusions: The study extends the application of Kramer.s caregiving adaptation process model (Kramer, 1997) to a sample of adult-child caregivers in China by demonstrating that both positive and negative aspects of caregiving may impact on the caregiver.s health related quality of life, suggesting that both aspects should be targeted in supportive interventions for Chinese family caregivers. Moreover, by demonstrating partial mediation effects, the study provides four influencing factors (i.e., filial piety, social support, resilience, and personal mastery) as specific targets for clinical interventions. Furthermore, the study found evidence that urban adult-child caregivers had more negative but similar positive experience compared to their rural peers, suggesting that the establishment of supportive services for urban caregivers may be more urgent at present stage in China. Additionally, since urban caregivers tended to use appraisal of role gain and personal mastery to protect themselves from negative well-being outcomes than rural caregivers to a greater extend, interventions targeting utility of gain or/and personal mastery to decrease negative outcomes might be more effective in urban caregivers than in rural caregivers. On the other hand, as cultural expectations and expression of filial piety tend to be more traditional in rural areas, interventions targeting filial piety could be more effective among rural caregivers. Last but not least, as rural adult-child caregivers have more existing natural social support than their urban counterparts, mobilising existing natural social support resources may be more beneficial for rural caregivers, whereas, formal supports (e.g., counselling services, support groups and adult day care centres) should be enhanced for urban caregivers.

Refusal of medical treatment : a child's prerogative?

Society has a need for children to be able to make health care decisions. Homeless children need access to health care. Parents may not be accessible or competent to consent to their child’s health care. The familial relationship may have broken down. Children may not want their parents to know about drug, alcohol or pregnancy related issues. There is legal and academic support for the right of children to make autonomous decisions with respect to their health care. However what these decisions cover and who can make them is not clear. Whether or not a minor has capacity and is therefore competent to consent to medical treatment is a question of law. Some states of Australia have enacted legislation, while others rely on the common law to determine this issue. At common law a minor is capable of giving consent to medical treatment when he or she achieves a sufficient understanding and intelligence to be able to understand fully what is proposed. Known as ‘Gillick competence’ this is a well known principle of law. The question posed by this paper is whether the decision of a ‘Gillick competent’ child can and should be overridden by the court?

The relationship between parents’ self-efficacy beliefs, outcome expectations, child behaviour, and management of atopic dermatitis

Atopic dermatitis (AD) is a chronic inflammatory skin condition, characterized by intense pruritis, with a complex aetiology comprising multiple genetic and environmental factors. It is a common chronic health problem among children, and along with other allergic conditions, is increasing in prevalence within Australia and in many countries worldwide. Successful management of childhood AD poses a significant and ongoing challenge to parents of affected children. Episodic and unpredictable, AD can have profound effects on children’s physical and psychosocial wellbeing and quality of life, and that of their caregivers and families. Where concurrent child behavioural problems and parenting difficulties exist, parents may have particular difficulty achieving adequate and consistent performance of the routine management tasks that promote the child’s health and wellbeing. Despite frequent reports of behaviour problems in children with AD, past research has neglected the importance of child behaviour to parenting confidence and competence with treatment. Parents of children with AD are also at risk of experiencing depression, anxiety, parenting stress, and parenting difficulties. Although these factors have been associated with difficulty in managing other childhood chronic health conditions, the nature of these relationships in the context of child AD management has not been reported. This study therefore examined relationships between child, parent, and family variables, and parents’ management of child AD and difficult child behaviour, using social cognitive and self-efficacy theory as a guiding framework. The study was conducted in three phases. It employed a quantitative, cross-sectional study design, accessing a community sample of 120 parents of children with AD, and a sample of 64 child-parent dyads recruited from a metropolitan paediatric tertiary referral centre. In Phase One, instruments designed to measure parents’ self-reported performance of AD management tasks (Parents’ Eczema Management Scale – PEMS) and parents’ outcome expectations of task performance (Parents’ Outcome Expectations of Eczema Management Scale – POEEMS) were adapted from the Parental Self-Efficacy with Eczema Care Index (PASECI). In Phase Two, these instruments were used to examine relationships between child, parent, and family variables, and parents’ self-efficacy, outcome expectations, and self-reported performance of AD management tasks. Relationships between child, parent, and family variables, parents’ self-efficacy for managing problem behaviours, and reported parenting practices, were also examined. This latter focus was explored further in Phase Three, in which relationships between observed child and parent behaviour, and parent-reported self-efficacy for managing both child AD and problem behaviours, were explored. Phase One demonstrated the reliability of both PEMS and POEEMS, and confirmed that PASECI was reliable and valid with modification as detailed. Factor analyses revealed two-factor structures for PEMS and PASECI alike, with both scales containing factors related to performing routine management tasks, and managing the child’s symptoms and behaviour. Factor analysis was also applied to POEEMS resulting in a three-factor structure. Factors relating to independent management of AD by the parent, involving healthcare professionals in management, and involving the child in management of AD were found. Parents’ self-efficacy and outcome expectations had a significant influence on self-reported task performance. In Phase Two, relationships emerged between parents’ self-efficacy and self-reported performance of AD management tasks, and AD severity, child behaviour difficulties, parent depression and stress, conflict over parenting issues, and parents’ relationship satisfaction. Using multiple linear regressions, significant proportions of variation in parents’ self-efficacy and self-reported performance of AD management tasks were explained by child behaviour difficulties and parents’ formal education, and self-efficacy emerged as a likely mediator for the relationships between both child behaviour and parents’ education, and performance of AD management tasks. Relationships were also found between parents’ self-efficacy for managing difficult child behaviour and use of dysfunctional parenting strategies, and child behaviour difficulties, parents’ depression and stress, conflict over parenting issues, and relationship satisfaction. While significant proportions of variation in self-efficacy for managing child behaviour were explained by both child behaviour and family income, family income was the only variable to explain a significant proportion of variation in parent-reported use of dysfunctional parenting strategies. Greater use of dysfunctional parenting strategies (both lax and authoritarian parenting) was associated with more severe AD. Parents reporting lower self-efficacy for managing AD also reported lower self-efficacy for managing difficult child behaviour; likewise, less successful self-reported performance of AD management tasks was associated with greater use of dysfunctional parenting strategies. When child and parent behaviour was directly observed in Phase Three, more aversive child behaviour was associated with lower self-efficacy, less positive outcome expectations, and poorer self-reported performance of AD management tasks by parents. Importantly, there were strong positive relationships between these variables (self-efficacy, outcome expectations, and self-reported task performance) and parents’ observed competence when providing treatment to their child. Less competent performance was also associated with greater parent-reported child behaviour difficulties, parent depression and stress, parenting conflict, and relationship dissatisfaction. Overall, this study revealed the importance of child behaviour to parents’ confidence and practices in the contexts of child AD and child behaviour management. Parents of children with concurrent AD and behavioural problems are at particular risk of having low self-efficacy for managing their child’s AD and difficult behaviour. Children with more severe AD are also at higher risk of behaviour problems, and thus represent a high-risk group of children whose parents may struggle to manage the disease successfully. As one of the first studies to examine the role and correlates of parents’ self-efficacy in child AD management, this study identified a number of potentially modifiable factors that can be targeted to enhance parents’ self-efficacy, and improve parent management of child AD. In particular, interventions should focus on child behaviour and parenting issues to support parents caring for children with AD and improve child health outcomes. In future, findings from this research will assist healthcare teams to identify parents most in need of support and intervention, and inform the development and testing of targeted multidisciplinary strategies to support parents caring for children with AD.

A child led participatory approach for technology-based intervention

There is significant interest in Human-computer interaction methods that assist in the design of applications for use by children. Many of these approaches draw upon standard HCI methods,such as personas, scenarios, and probes. However, often these techniques require communication and kinds of thinking skills that are designer centred,which prevents children with Autism Spectrum Disorders or other learning and communication disabilities from being able to participate. This study investigates methods that might be used with children with ASD or other learning and communication disabilities to inspire the design of technology based intervention approaches to support their speech and language development. Similar to Iversen and Brodersen, we argue that children with ASD should not be treated as being in some way “cognitively incomplete”. Rather they are experts in their everyday lives and we cannot design future IT without involving them. However, how do we involve them Instead of beginning with HCI methods, we draw upon easy to use technologies and methods used in the therapy professions for child engagement, particularly utilizing the approaches of Hanen (2011) and Greenspan (1998). These approaches emphasize following the child’s lead and ensuring that the child always has a legitimate turn at a detailed level of interaction. In a pilot project, we have studied a child’s interactions with their parents about activities over which they have control – photos that they have taken at school on an iPad. The iPad was simple enough for this child with ASD to use and they enjoyed taking and reviewing photos. We use this small case study as an example of a child-led approach for a child with ASD. We examine interactions from this study in order to assess the possibilities and limitations of the child-led approach for supporting the design of technology based interventions to support speech and language development.