Interventions from pregnancy to two years after birth for parents experiencing complex post-traumatic stress disorder and/or with childhood experience of maltreatment.

BACKGROUND: Acceptable, effective and feasible support strategies (interventions) for parents experiencing complex post-traumatic stress disorder (CPTSD) symptoms or with a history of childhood maltreatment may offer an opportunity to support parental recovery, reduce the risk of intergenerational transmission of trauma and improve life-course trajectories for children and future generations. However, evidence relating to the effect of interventions has not been synthesised to provide a comprehensive review of available support strategies. This evidence synthesis is critical to inform further research, practice and policy approaches in this emerging area. OBJECTIVES: To assess the effects of interventions provided to support parents who were experiencing CPTSD symptoms or who had experienced childhood maltreatment (or both), on parenting capacity and parental psychological or socio-emotional wellbeing. SEARCH METHODS: In October 2021 we searched CENTRAL, MEDLINE, Embase, six other databases and two trials registers, together with checking references and contacting experts to identify additional studies. SELECTION CRITERIA: All variants of randomised controlled trials (RCTs) comparing any intervention delivered in the perinatal period designed to support parents experiencing CPTSD symptoms or with a history of childhood maltreatment (or both), to any active or inactive control. Primary outcomes were parental psychological or socio-emotional wellbeing and parenting capacity between pregnancy and up to two years postpartum. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed the eligibility of trials for inclusion, extracted data using a pre-designed data extraction form, and assessed risk of bias and certainty of evidence. We contacted study authors for additional information as required. We analysed continuous data using mean difference (MD) for outcomes using a single measure, and standardised mean difference (SMD) for outcomes using multiple measures, and risk ratios (RR) for dichotomous data. All data are presented with 95% confidence intervals (CIs). We undertook meta-analyses using random-effects models. MAIN RESULTS: We included evidence from 1925 participants in 15 RCTs that investigated the effect of 17 interventions. All included studies were published after 2005. Interventions included seven parenting interventions, eight psychological interventions and two service system approaches. The studies were funded by major research councils, government departments and philanthropic/charitable organisations. All evidence was of low or very low certainty. Parenting interventions Evidence was very uncertain from a study (33 participants) assessing the effects of a parenting intervention compared to attention control on trauma-related symptoms, and psychological wellbeing symptoms (postpartum depression), in mothers who had experienced childhood maltreatment and were experiencing current parenting risk factors. Evidence suggested that parenting interventions may improve parent-child relationships slightly compared to usual service provision (SMD 0.45, 95% CI -0.06 to 0.96; I2 = 60%; 2 studies, 153 participants; low-certainty evidence). There may be little or no difference between parenting interventions and usual perinatal service in parenting skills including nurturance, supportive presence and reciprocity (SMD 0.25, 95% CI -0.07 to 0.58; I2 = 0%; 4 studies, 149 participants; low-certainty evidence). No studies assessed the effects of parenting interventions on parents' substance use, relationship quality or self-harm. Psychological interventions Psychological interventions may result in little or no difference in trauma-related symptoms compared to usual care (SMD -0.05, 95% CI -0.40 to 0.31; I2 = 39%; 4 studies, 247 participants; low-certainty evidence). Psychological interventions may make little or no difference compared to usual care to depression symptom severity (8 studies, 507 participants, low-certainty evidence, SMD -0.34, 95% CI -0.66 to -0.03; I2 = 63%). An interpersonally focused cognitive behavioural analysis system of psychotherapy may slightly increase the number of pregnant women who quit smoking compared to usual smoking cessation therapy and prenatal care (189 participants, low-certainty evidence). A psychological intervention may slightly improve parents' relationship quality compared to usual care (1 study, 67 participants, low-certainty evidence). Benefits for parent-child relationships were very uncertain (26 participants, very low-certainty evidence), while there may be a slight improvement in parenting skills compared to usual care (66 participants, low-certainty evidence). No studies assessed the effects of psychological interventions on parents' self-harm. Service system approaches One service system approach assessed the effect of a financial empowerment education programme, with and without trauma-informed peer support, compared to usual care for parents with low incomes. The interventions increased depression slightly (52 participants, low-certainty evidence). No studies assessed the effects of service system interventions on parents' trauma-related symptoms, substance use, relationship quality, self-harm, parent-child relationships or parenting skills. AUTHORS' CONCLUSIONS: There is currently a lack of high-quality evidence regarding the effectiveness of interventions to improve parenting capacity or parental psychological or socio-emotional wellbeing in parents experiencing CPTSD symptoms or who have experienced childhood maltreatment (or both). This lack of methodological rigour and high risk of bias made it difficult to interpret the findings of this review. Overall, results suggest that parenting interventions may slightly improve parent-child relationships but have a small, unimportant effect on parenting skills. Psychological interventions may help some women stop smoking in pregnancy, and may have small benefits on parents' relationships and parenting skills. A financial empowerment programme may slightly worsen depression symptoms. While potential beneficial effects were small, the importance of a positive effect in a small number of parents must be considered when making treatment and care decisions. There is a need for further high-quality research into effective strategies for this population.

Experiences and barriers to accessing mental health support in mothers of children with a disability.

BACKGROUND: Despite evidence for high levels of mental health problems in mothers of children with a disability and the potential impact on caring for their child, very little is known about mothers' experience in accessing professional mental health support. This study aimed to explore mothers' views and experience on seeking help for their mental health. METHODS: Semi-structured interviews were conducted with 25 mothers of children with a disability. Thematic analysis was completed. RESULTS: Mothers experienced significant barriers when accesing support at the personal, professional and system level. Personal barriers included the need for competency and stigma about mental illness: professional barriers included the lack of discussions about mental health and interpersonal factors that hindered disclosure. System barriers included feeling invisible to the health services, paediatric care focusing on the child rather than the family and limitations to the type of mental health support available. CONCLUSION: Mothers perceive substantial barriers in accessing support for their mental health. It is important that strategies are designed so the importance of mentally healthy mothers is understood and to normalize a need for assistance when you are the mother of a child with additional support needs. Strategies are also needed to encourage mothers to seek help and to assist professionals having discussions about maternal wellbeing. Improvements are also required in the accessibility of service supports.

A pilot study of adolescent health literacy research in Melbourne: Implementation and reflections.

ISSUES ADDRESSED: While adolescent health literacy research has gained momentum, there is little evidence regarding its implementation and data collection in school settings. This study explored the feasibility of collecting health literacy data from Australian secondary schools and piloted three health literacy instruments. METHODS: A cross-sectional study was designed to recruit four government secondary schools in Melbourne. Active, opt-in consent was obtained from parents and students in Years 7-9, and an online survey was conducted. Three health literacy instruments were used: the 8-item Health Literacy Assessment Tool (HLAT-8), the Newest Vital Sign (NVS), and the 47-item Health Literacy Survey (HLS-47). RESULTS: A total of 120 students (age 12-15 years) were finally recruited from one school, whereas the other three schools declined due to busy educational commitment or no interest in research. Learnings and reflections on data collection included: a shared perspective of health literacy evaluation between school and researchers; the feasibility of online data collection; and the possibility of obtaining passive, opt-out consent. About one-quarter (23.7%-32.2%) of students were likely to have poor health literacy. CONCLUSIONS: Although the recruitment was challenging, this pilot study indicates the feasibility of large-scale online health literacy survey in future school-based research. SO WHAT?: Measuring and monitoring adolescent health literacy is essential to achieve the aim of the Australian Curriculum of Health and Physical Education. More implementation research is needed with representative samples to validate health literacy instruments and examine the impact of health literacy on health promotion outcomes in Australian adolescents.

Correction to: Native Hawaiian Views on Biobanking.

The original version of this article unfortunately contained a mistake. The name of "Maile Taualii" is now corrected in the author group of this article.

Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure.

PURPOSE: Children with intellectual disability encounter daily challenges beyond those captured in current quality of life measures. This study evaluated a new parent-report measure for children with intellectual disability, the Quality of Life Inventory-Disability (QI-Disability). METHODS: QI-Disability was administered to 253 primary caregivers of children (aged 5-18 years) with intellectual disability across four diagnostic groups: Rett syndrome, Down syndrome, cerebral palsy or autism spectrum disorder. Exploratory and confirmatory factor analyses were conducted and goodness of fit of the factor structure assessed. Associations between QI-Disability scores, and diagnostic and age groups were examined with linear regression. RESULTS: Six domains were identified: physical health, positive emotions, negative emotions, social interaction, leisure and the outdoors, and independence. Goodness-of-fit statistics were satisfactory and similar for the whole sample and when the sample was split by ability to walk or talk. On 100 point scales and compared to Rett syndrome, children with Down syndrome had higher leisure and the outdoors (coefficient 10.6, 95% CI 3.4,17.8) and independence (coefficient 29.7, 95% CI 22.9, 36.5) scores, whereas children with autism spectrum disorder had lower social interaction scores (coefficient - 12.8, 95% CI - 19.3, - 6.4). Scores for positive emotions (coefficient - 6.1, 95% CI - 10.7, - 1.6) and leisure and the outdoors (coefficient 5.4, 95% CI - 10.6, - 0.1) were lower for adolescents compared with children. CONCLUSIONS: Initial evaluation suggests that QI-Disability is a reliable and valid measure of quality of life across the spectrum of intellectual disability. It has the potential to allow clearer identification of support needs and measure responsiveness to interventions.

A Rights-Based Approach for Service Providers to Measure the Quality of Life of Children with a Disability.

BACKGROUND: This paper identifies the best instruments for service providers to measure the quality of life (QoL) of children with a disability, with a focus on their alignment with the Convention on the Rights of Persons with a Disability (CRPD). METHODS: This study reviewed systematic reviews to identify generic QoL instruments for children and adolescents, followed by an appraisal process using newly developed criteria. QoL instruments with a health status, functioning, and condition-specific focus were excluded. RESULTS: Twenty generic QoL instruments for children were identified from existing systematic reviews to undergo further review. Only 2 of the 20 instruments were recommended for service providers to measure the QoL of children with a disability (KIDSCREEN and KINDL). Many pediatric QoL instruments (N = 9) focus on functioning and are not consistent with the CRPD, confounding a child's functioning with their feelings about their life. KIDSCREEN and KINDL have self-report and parent report versions, are applicable for childhood and adolescence, demonstrate adequate reliability and validity, involved children in their development, focus on wellbeing, are likely to be able to be completed by a child with a disability, and are low in cost. CONCLUSIONS: Many instruments focus on functioning rather than wellbeing and thus may not capture the QoL of children with a disability. A child's functional limitations may not be consistent with their feelings about life. Two instruments that assess wellbeing and meet the criteria important for service providers now require further testing to explore their usefulness and validity for children with varying abilities.

Remote Patient Monitoring and Telemedicine in Neonatal and Pediatric Settings: Scoping Literature Review.

BACKGROUND: Telemedicine and telehealth solutions are emerging rapidly in health care and have the potential to decrease costs for insurers, providers, and patients in various settings. Pediatric populations that require specialty care are disadvantaged socially or economically or have chronic health conditions that will greatly benefit from results of studies utilizing telemedicine technologies. This paper examines the emerging trends in pediatric populations as part of a systematic literature review and provides a scoping review of the type, extent, and quantity of research available. OBJECTIVE: This paper aims to examine the role of remote patient monitoring (RPM) and telemedicine in neonatal and pediatric settings. Findings can be used to identify strengths, weaknesses, and gaps in the field. The identification of gaps will allow for interventions or research to improve health care quality and costs. METHODS: A systematic literature review is being conducted to gather an adequate amount of relevant research for telehealth in pediatric populations. The fields of RPM and telemedicine are not yet very well established by the health care services sector, and definitions vary across health care systems; thus, the terms are not always defined similarly throughout the literature. Three databases were scoped for information for this specific review, and 56 papers were included for review. RESULTS: Three major telemedicine trends emerged from the review of 45 relevant papers-RPM, teleconsultation, and monitoring patients within the hospital, but without contact-thus, decreasing the likelihood of infection or other adverse health effects. CONCLUSIONS: While the current telemedicine approaches show promise, limited studied conditions and small sample sizes affect generalizability, therefore, warranting further research. The information presented can inform health care providers of the most widely implemented, studied, and effective forms of telemedicine for patients and their families and the telemedicine initiatives that are most cost efficient for health systems. While the focus of this review is to summarize some telehealth applications in pediatrics, we have also presented research studies that can inform providers about the importance of data sharing of remote monitoring data between hospitals. Further reports will be developed to inform health systems as the systematic literature review continues.

Supporting the mental health of mothers of children with a disability: Health professional perceptions of need, role, and challenges.

BACKGROUND: Mothers of children with a disability have a higher risk of mental health difficulties than mothers of typically developing children. Very little is known about how health professionals perceive their role in supporting mothers' mental health. We aimed to explore the perspectives of health professionals working with families of children with a disability about how they provide support for maternal mental health in their roles. Specifically, whether professionals consider it their role and responsibility to provide support, the types of actions that they engage in to do this, and the challenges that they experience. METHODS: This qualitative semi-structured interview study included 13 health professionals (allied health professionals, general practitioners, and paediatricians) working with families of a child with a disability. Thematic analysis was conducted on transcribed interview data. RESULTS: Four overlapping themes were identified from the data indicating that professionals knew that mothers needed mental health support but were not always clear about their roles and responsibilities to support maternal mental health. Professionals also found it difficult to address maternal mental health difficulties, were not always aware of the best strategies to support maternal mental health, and faced difficulties that could be overcome with training and system improvements. CONCLUSIONS: Although all health professionals were aware of the frequent occurrence of maternal mental health difficulties and the importance of addressing them, several challenges were identified to managing them successfully. Providing health professionals with training in discussing mental health and clearer referral pathways would contribute to mothers being better supported, in addition to policy change that allows parental support in child health services.

Conceptualizing a quality of life framework for girls with Rett syndrome using qualitative methods.

Rett syndrome is a neurodevelopmental disorder mainly affecting females and associated with a mutation on the MECP2 gene. There has been no systematic evaluation of the domains of quality of life (QOL) in Rett syndrome. The aims of this study were to explore QOL in school-aged children with Rett syndrome and compare domains with those identified in other available QOL scales. The sample comprised 21 families registered with the Australian Rett Syndrome Database whose daughter with Rett syndrome was aged 6-18 years. Semi-structured telephone interviews were conducted with each parent caregiver (19 mothers, 2 fathers) to investigate aspects of their daughter's life that were satisfying or challenging to her. Qualitative thematic analysis using a grounded theory framework was conducted, and emerging domains compared with those in two generic and three disability parent-report child QOL measures. Ten domains were identified: physical health, body pain, and discomfort, behavioral and emotional well-being, communication skills, movement and mobility, social connectedness, variety of activities, provision of targeted services, stability of daily routines, and the natural environment. The two latter domains were newly identified and each domain contained elements not represented in the comparison measures. Our data articulated important aspects of life beyond the genetic diagnosis. Existing QOL scales for children in the general population or with other disabilities did not capture the QOL of children with Rett syndrome. Our findings support the construction of a new parent-report measure to enable measurement of QOL in this group.

A controlled trial of implementing a complex mental health intervention for carers of vulnerable young people living in out-of-home care: the ripple project.

BACKGROUND: Out-of-home care (OoHC) refers to young people removed from their families by the state because of abuse, neglect or other adversities. Many of the young people experience poor mental health and social function before, during and after leaving care. Rigorously evaluated interventions are urgently required. This publication describes the protocol for the Ripple project and notes early findings from a controlled trial demonstrating the feasibility of the work. The Ripple project is implementing and evaluating a complex mental health intervention that aims to strengthen the therapeutic capacities of carers and case managers of young people (12-17 years) in OoHC. METHODS: The study is conducted in partnership with mental health, substance abuse and social services in Melbourne, with young people as participants. It has three parts: 1. Needs assessment and implementation of a complex mental health intervention; 2. A 3-year controlled trial of the mental health, social and economic outcomes; and 3. Nested process evaluation of the intervention. RESULTS: Early findings characterising the young people, their carers and case managers and implementing the intervention are available. The trial Wave 1 includes interviews with 176 young people, 52% of those eligible in the study population, 104 carers and 79 case managers. CONCLUSIONS: Implementing and researching an affordable service system intervention appears feasible and likely to be applicable in other places and countries. Success of the intervention will potentially contribute to reducing mental ill-health among these young people, including suicide attempts, self-harm and substance abuse, as well as reducing homelessness, social isolation and contact with the criminal justice system. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12615000501549 . Retrospectively registered 19 May 2015.

The Influence of Social Disadvantage on Children's Emotional and Behavioral Difficulties at Age 4-7 Years.

OBJECTIVE: To examine associations between indicators of social disadvantage and emotional and behavioral difficulties in children aged 4-7 years. STUDY DESIGN: This cross-sectional study was based on data collected in a questionnaire completed by parents of children enrolled in their first year of school in Victoria, Australia, in 2010. Just over 57000 children participated (86% of children enrolled), of whom complete data were available for 38955 (68% of the dataset); these children formed the analysis sample. The outcome measure was emotional and behavioral difficulties, assessed by the Strengths and Difficulties Questionnaire Total Difficulties score. Logistic regression analyses were undertaken. RESULTS: Having a concession card (a government-issued card enabling access to subsidized goods and services, particularly in relation to medical care, primarily for economically vulnerable households) was the strongest predictor of emotional and behavioral difficulties (OR, 2.71; 95% CI, 2.39-3.07), followed by living with 1 parent and the parent's partner or not living with either parent (OR, 1.93; 95% CI, 1.58-2.37) and having a mother who did not complete high school (OR, 1.27; 95% CI, 1.11-1.45). CONCLUSION: These findings may assist schools and early childhood practitioners in identifying young children who are at increased risk of emotional and behavioral difficulties, to provide these children, together with their parents and families, with support from appropriate preventive interventions.

Promoting resilience in adults with experience of intimate partner violence or child maltreatment: a narrative synthesis of evidence across settings.

BACKGROUND: People who have experienced intimate partner violence (IPV) or child maltreatment (CM) are at risk of having lower resilience and adverse psychological outcomes. In keeping with the social and environmental factors that support resilience, there is a need to take a public health approach to its investigation and to identify existing initiatives in particular settings and populations that can guide its deliberate promotion. METHOD: This narrative synthesis examines quantitative and qualitative studies of interventions with resilience-related outcomes in specified health and other settings. Clinical RCTs are excluded as beyond the scope of this review. RESULTS: Twenty studies were identified for review in several settings, consisting of 14 quantitative studies, 2 review studies, 2 qualitative studies and 2 mixed-methods studies. Three quantitative studies produced strong evidence to support: a home visitation program for at-risk mothers; a methadone program for women and a substance abuse program. This review reveals that few studies use specific resilience measures. CONCLUSIONS: The topic has been little studied despite high needs for public health interventions in countries of all types. Interventions and research studies that use specific resilience measures are likely to help measure and integrate what is currently a disparate area. IMPLICATIONS: The participation of people with IPV or CM history in program and research design and implementation is indicated to support advocacy, innovation and sustainable interventions. This is especially pertinent for interventions in LAMIC and indigenous settings where continuing programs are sorely needed.

Fair relationships and policies to support family day care educators' mental health: a qualitative study.

BACKGROUND: High quality child care is a population health investment that relies on the capacity of providers. The mental health and wellbeing of child care educators is fundamental to care quality and turnover, yet sector views on the relationship between working conditions and mental health and wellbeing are scarce. This paper examines child care educators' and sector key informants' perspectives on how working in family day care influences educator's mental health and wellbeing. METHODS: Semi-structured telephone interviews were conducted with Australian family day care educators (n = 16) and key informants (n = 18) comprised of representatives from family day care schemes, government and other relevant organisations regarding the relationship between working conditions and educator mental health. Thematic analysis referenced the assumptions and concepts of critical inquiry and used social exchange theory. RESULTS: Educators and key informants reported that educators' mental health was affected by the quality of their relationships with government, family day care schemes, and the parents and children using their services. These social relationships created and contributed to working conditions that were believed to promote or diminish educators' mental health. High quality relationships featured fair exchanges of educator work for key resources of social support and respect; adequate income; professional services; and information. Crucially, how exchanges influenced educator wellbeing was largely contingent on government policies that reflect the values and inequities present in society. CONCLUSIONS: Making policies and relationships between educators, government and family day care schemes fairer would contribute strongly to the protection and promotion of educator mental health and wellbeing, and in turn contribute to workforce stability and care quality.

Parent-reported measures of child health and wellbeing in same-sex parent families: a cross-sectional survey.

BACKGROUND: It has been suggested that children with same-sex attracted parents score well in psychosocial aspects of their health, however questions remain about the impact of stigma on these children. Research to date has focused on lesbian parents and has been limited by small sample sizes. This study aims to describe the physical, mental and social wellbeing of Australian children with same-sex attracted parents, and the impact that stigma has on them. METHODS: A cross-sectional survey, the Australian Study of Child Health in Same-Sex Families, was distributed in 2012 to a convenience sample of 390 parents from Australia who self-identified as same-sex attracted and had children aged 0-17 years. Parent-reported, multidimensional measures of child health and wellbeing and the relationship to perceived stigma were measured. RESULTS: 315 parents completed the survey (completion rate = 81%) representing 500 children. 80% of children had a female index parent while 18% had a male index parent. Children in same-sex parent families had higher scores on measures of general behavior, general health and family cohesion compared to population normative data (ß = 2.93, 95% CI = 0.35 to 5.52, P = .03; ß = 5.60, 95% CI = 2.69 to 8.52, P = <.001; and ß = 6.01, 95% CI = 2.84 to 9.17, P = <.001 respectively). There were no significant differences between the two groups for all other scale scores. Physical activity, mental health, and family cohesion were all negatively associated with increased stigma (ß = -3.03, 95% CI = -5.86 to -0.21, P = .04; ß = -10.45, 95% CI = -18.48 to -2.42, P = .01; and ß = -9.82, 95% CI = -17.86 to -1.78, P = .02 respectively) and the presence of emotional symptoms was positively associated with increased stigma (ß =0.94, 95% CI = 0.08 to 1.81, P = .03). CONCLUSIONS: Australian children with same-sex attracted parents score higher than population samples on a number of parent-reported measures of child health. Perceived stigma is negatively associated with mental health. Through improved awareness of stigma these findings play an important role in health policy, improving child health outcomes.

Native Hawaiian views on biobanking.

Genomic science represents a new frontier for health research and will provide important tools for personalizing health care. Biospecimen-based research is an important mechanism for expanding the genomic research capacity, and indigenous peoples are a target of biospecimen-based research due to their relative isolation and the potential to discover rare or unique genotypes. This study explored Native Hawaiian perceptions of and expectations for biobanking. Ten discussion groups were conducted with Native Hawaiians (N = 92), who first heard a presentation on biobanking. Six themes emerged: (1) biobank governance by the Native Hawaiian community, (2) research transparency, (3) priority of Native Hawaiian health concerns, (4) leadership by Native Hawaiian scientists accountable to community, (5) re-consenting each time specimen is used, and (6) education of Native Hawaiian communities. Considered together, these findings suggest that biobanking should be guided by six principles that comprise "G.R.E.A.T. Research" (Governance, Re-consent, Education, Accountability, Transparency, Research priorities). These recommendations are being shared with biobanking facilities in Hawai'i as they develop protocols for biobanking participation, governance, and education. These findings also inform researchers and indigenous peoples throughout the world who are working on biobanking and genomic research initiatives in their nations.

Healing the Past by Nurturing the Future: trauma-aware, healing-informed care to improve support for Aboriginal and Torres Strait Islander families - implementation and evaluation study protocol.

INTRODUCTION: Complex trauma can have serious impacts on the health and well-being of Aboriginal and Torres Strait Islander families. The perinatal period represents a 'critical window' for recovery and transforming cycles of trauma into cycles of healing. The Healing the Past by Nurturing the Future (HPNF) project aims to implement and evaluate a programme of strategies to improve support for Aboriginal and Torres Strait islander families experiencing complex trauma. METHOD: The HPNF programme was codesigned over 4 years to improve awareness, support, recognition and assessment of trauma. Components include (1) a trauma-aware, healing-informed training and resource package for service providers; (2) trauma-awareness resources for parents; (3) organisational readiness assessment; (4) a database for parents and service providers to identify accessible and appropriate additional support and (5) piloting safe recognition and assessment processes. The programme will be implemented in a large rural health service in Victoria, Australia, over 12 months. Evaluation using a mixed-methods approach will assess feasibility, acceptability, cost, effectiveness and sustainability. This will include service user and provider interviews; service usage and cost auditing; and an administrative linked data study of parent and infant outcomes. ANALYSIS: Qualitative data will be analysed using reflexive thematic analysis. Quantitative and service usage outcomes will be described as counts and proportions. Evaluation of health outcomes will use interrupted time series analyses. Triangulation of data will be conducted and mapped to the Consolidated Framework for Implementation Research and Reach, Effectiveness, Adoption, Implementation and Maintenance frameworks to understand factors influencing feasibility, acceptability, effectiveness, cost and sustainability. ETHICS AND DISSEMINATION: Approval granted from St Vincent's Melbourne Ethics Committee (approval no. 239/22). Data will be disseminated according to the strategy outlined in the codesign study protocol, in-line with the National Health and Medical Research Council Aboriginal and Torres Strait Islander Research Excellence criteria.

Social outcomes of young adults with cerebral palsy.

BACKGROUND: Functional abilities and social outcomes of young adults with cerebral palsy (CP) are relatively under-researched. Improvements in paediatric care have extended the expectation of achieving adulthood to 90%. METHOD: Young adults aged 20-30 years with CP (n = 335) were compared to a population-based control group (n = 2,152) of the same age. Motor function, self-care abilities, educational level, and social outcomes were determined by questionnaire. RESULTS: Half the study group walked independently, but only 35.5% were independent in self-care. In comparison to their peers without disability, the study group's highest educational level was lower (p < .0001), as were rates of employment (36.3% compared with 80%), they were more likely to be living with parents (80% compared with 21%), to be single, and to have limited financial resources. CONCLUSION: Young adults with CP are functionally and socially disadvantaged in contrast with their peers without disability. Self-care dependence, intellectual disability, and communication impairments contribute to these outcomes but are not solely responsible.

Qualitative differences in perspective on children's quality of life between children with cerebral palsy and their parents.

BACKGROUND: Cerebral palsy (CP) is one of the most common childhood disabilities, impacting many areas of a child's life. Increasingly, quality of life (QOL) measures are used to capture holistic wellbeing of children with CP. However most validated QOL measures for children are based on adult perspective only, with limited focus on child perspective. Conceptual differences between children's and adults' definitions of QOL may reflect different underlying QOL models which contribute to measurement score divergence. This qualitative study investigated the conceptual meaning of QOL for children with CP, comparing child and parent perspectives. Eighteen families completed 8 child interviews and 18 parent interviews. Children (11 boys, 7 girls) represented the spectrum of motor functioning, with comorbidities including epilepsy, intellectual disability, and communication impairments. Child and parent interviews were analysed separately using constructivist grounded theory methods and then findings were integrated to examine similarities and differences. RESULTS: All participants sought child inclusion in social activities, education, and recreation, requiring negotiation, adaptations, and advocacy. Five conceptual categories emerged from child interviews: socialising, play, negotiating limitations, self-identity, and developing agency. This reflected an individual model of QOL supporting child development goals. Parent interview findings revealed concepts related to child-specific QOL (day-to-day functioning and enabling child goals), as well as parent and family functioning concepts aligned to models of "family QOL", embracing impacts of family relationships and the interdependence of QOL among family members. CONCLUSIONS: This study identified similarities and differences in child and parent perceptions of QOL for the child with CP. Children provided insights into the importance of play and peer support, and their developing self-identity and sense of agency. Self-directed free play, especially, was identified by children but not parents as a central everyday activity promoting wellbeing and social inclusion. Parents discussed family functioning and aspects outside of child sight, such as managing time and financial resources. Relying on parents' perspective alone to model child QOL misses valuable information that children contribute. Equally, child report alone misses parent experiences that directly influence child QOL. There is value in incorporating family QOL into parent reports while developing a conceptually separate child self-report QOL instrument.

ACHESS--The Australian study of child health in same-sex families: background research, design and methodology.

BACKGROUND: There are an increasing number of children in Australia growing up with same-sex attracted parents. Although children from same-sex parent families do in general perform well on many psychosocial measures recent research is beginning to consider some small but significant differences when these children are compared with children from other family backgrounds. In particular studies suggest that there is an association between the stigma that same-sex parent families experience and child wellbeing. Research to date lacks a holistic view with the complete physical, mental and social wellbeing of children not yet addressed. In addition, most studies have focused only on families with lesbian parents and have studied only small numbers of children. METHODS/DESIGN: The Australian Study of Child Health in Same-Sex Families (ACHESS) is a national study that aims to determine the complete physical, mental and social wellbeing of Australian children under the age 18 years with at least one parent who self identifies as being same-sex attracted. There will be a particular focus on the impact that stigma and discrimination has on these families. Parent and child surveys will be used to collect data and will be available both online and in paper form. Measures have been chosen whenever possible that have sound conceptual underpinnings, robust psychometric properties and Australian normative data, and include the Child Health Questionnaire (CHQ), the Strengths and Difficulties Questionnaire (SDQ) and the Kessler Psychological Distress Scale (K10). DISCUSSION: ACHESS aims to be the largest study of its kind and will for the first time produce a detailed quantitative analysis of Australian children with same-sex attracted parents. By inviting participants to take part in further research it will also establish a valuable cohort of children, and their families, to launch future waves of research that will help us better understand the health and wellbeing of children with same-sex attracted parents.

Accessing maternal and child health services in Melbourne, Australia: reflections from refugee families and service providers.

BACKGROUND: Often new arrivals from refugee backgrounds have experienced poor health and limited access to healthcare services. The maternal and child health (MCH) service in Victoria, Australia, is a joint local and state government operated, cost-free service available to all mothers of children aged 0-6 years. Although well-child healthcare visits are useful in identifying health issues early, there has been limited investigation in the use of these services for families from refugee backgrounds. This study aims to explore experiences of using MCH services, from the perspective of families from refugee backgrounds and service providers. METHODS: We used a qualitative study design informed by the socioecological model of health and a cultural competence approach. Two geographical areas of Melbourne were selected to invite participants. Seven focus groups were conducted with 87 mothers from Karen, Iraqi, Assyrian Chaldean, Lebanese, South Sudanese and Bhutanese backgrounds, who had lived an average of 4.7 years in Australia (range one month-18 years). Participants had a total of 249 children, of these 150 were born in Australia. Four focus groups and five interviews were conducted with MCH nurses, other healthcare providers and bicultural workers. RESULTS: Four themes were identified: facilitating access to MCH services; promoting continued engagement with the MCH service; language challenges; and what is working well and could be done better. Several processes were identified that facilitated initial access to the MCH service but there were implications for continued use of the service. The MCH service was not formally notified of new parents arriving with young children. Pre-arranged group appointments by MCH nurses for parents who attended playgroups worked well to increase ongoing service engagement. Barriers for parents in using MCH services included access to transportation, lack of confidence in speaking English and making phone bookings. Service users and providers reported that continuity of nurse and interpreter is preferred for increasing client-provider trust and ongoing engagement. CONCLUSIONS: Although participants who had children born in Melbourne had good initial access to, and experience of, using MCH services, significant barriers remain. A systems-oriented, culturally competent approach to service provision would improve the service utilisation experience for parents and providers, including formalising links and notifications between settlement services and MCH services.