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.

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.

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.

Health Literacy and Health-Related Quality of Life in Beijing Adolescents: A Path Analysis.

BACKGROUND: Health literacy is a critical driver of achieving an equitable world for every child and adolescent. Although the relationship between health literacy and health-related quality of life (HRQoL) has been documented, little is known among adolescents. In addition, due to lack of theory-driven empirical research, it remains unknown about the full relationship between health literacy, its antecedents, and HRQoL. OBJECTIVE: This study aimed to apply Manganello's framework to investigate how health literacy was associated with its antecedents and HRQoL in Beijing secondary students. METHODS: A cross-sectional study was conducted with 650 students in years 7 to 9 from four secondary schools in Beijing. Based on Manganello's health literacy framework, a self-administered questionnaire was used to collect information on health literacy, its antecedents (i.e., sociodemographics, self-efficacy, social support, school and community environment), and HRQoL. The 8-item Health Literacy Assessment Tool was used to measure health literacy (score range 0-37), and the KIDSCREEN-10 was used to measure HRQoL (score range 10-50). Path analysis was conducted to examine the mediating role of health literacy in the relationship between its antecedents and HRQoL. KEY RESULTS: Overall, the average score of students' health literacy and HRQoL was 26.37 (±5.89) and 37.49 (±5.78), respectively. Health literacy was positively correlated with HRQoL (r = 0.36, p < .01). In the final path model, health literacy was not associated with HRQoL. However, students' social support, school environment, and community environment were associated with HRQoL. Health literacy was affected by self-efficacy, social support, and school environment (all p < .05). CONCLUSIONS: A range of intrapersonal, interpersonal, and environmental factors were associated with health literacy and HRQoL. A holistic approach is needed to improve health literacy and HRQoL through multilevel intervention strategies such as increasing personal self-efficacy, promoting social support, and creating positive environments. [HLRP: Health Literacy Research and Practice. 2022;6(4):e300-e309.] Plain Language Summary: We investigated how health literacy was related to its influencing factors and HRQoL among Beijing secondary students in years 7 to 9. Health literacy and HRQoL were independent outcomes affected by a range of social-ecological factors including self-efficacy, social support, and perceptions of school and community environments.

"You Can't Replace That Feeling of Connection to Culture and Country": Aboriginal and Torres Strait Islander Parents' Experiences of the COVID-19 Pandemic.

This Aboriginal-led study explores Aboriginal and Torres Strait Islander parents' experiences of COVID-19. 110 Aboriginal and Torres Strait Islander parents were interviewed between October 2020 and March 2022. Participants were recruited through community networks and partner health services in South Australia, Victoria, and Northern Territory, Australia. Participants were predominantly female (89%) and based in Victoria (47%) or South Australia (45%). Inductive thematic analysis identified three themes: (1) Changes to daily living; (2) Impact on social and emotional wellbeing; and (3) Disconnection from family, community, and culture. COVID-19 impacted Aboriginal and Torres Strait Islander families. Disruption to cultural practice, and disconnection from country, family, and community was detrimental to wellbeing. These impacts aggravated pre-existing inequalities and may continue to have greater impact on Aboriginal and Torres Strait Islander parents and communities due to intergenerational trauma, stemming from colonisation, violence and dispossession and ongoing systemic racism. We advocate for the development of a framework that ensures an equitable approach to future public health responses for Aboriginal and Torres Strait Islander people.

Comparison of Health Literacy Assessment Tools among Beijing School-Aged Children.

Health literacy is a broad and multidimensional construct, making its measurement and conclusions inconsistent. This study aims to compare the patterning of health literacy using different assessment tools and examine their impact on children's developmental outcomes. A cross-sectional study was conducted with 650 students in Years 7-9 from four secondary schools in Beijing. Health literacy was measured by the eight-item health literacy assessment tool (HLAT, score range 0-37), the six-item Newest Vital Sign (NVS, score range 0-6), and the 16-item Health Literacy Survey (HLS, score range 0-16). Based on Manganello's health literacy framework, information on upstream factors (e.g., gender, ethnicity, socioeconomic status) and developmental outcomes (e.g., health-promoting behaviours, health service use, global health status) was collected. Overall, the average scores for health literacy were 26.34 ± 5.89, 3.64 ± 1.64, and 13.72 ± 2.94, respectively, for HLAT, NVS, and HLS. The distribution of health literacy varied by socio-demographics and individual characteristics except for gender, no matter which health literacy assessment tool was used. The magnitude of associations between health literacy, its upstream factors and developmental outcomes was greater when using three-domain instruments (HLAT and HLS) than using single-domain instruments (NVS). The approach to health literacy measurement will influence the conclusion. Using multidimensional assessment tools may better capture a child's health literacy and contribute to the maximum efficiency and effectiveness of school-based health literacy interventions.

Accessible design features and home modifications to improve physical housing accessibility: A mixed-methods survey of occupational therapists.

BACKGROUND: Despite the number of older people and people with disabilities increasing in Australia, it is unclear which housing design features are needed to support physical housing accessibility for people with and without disabilities across the lifespan. OBJECTIVE: This study drew upon the experience of occupational therapists to investigate accessible housing design features and home modifications to support aging in place and discharge from hospital to home. METHODS: A cross-sectional online survey exploring housing design features and home modifications was completed by 144 Australian occupational therapists over six weeks in 2021. Descriptive quantitative and qualitative data analyses were used. RESULTS: For both aging in place and hospital discharge, the most important housing design features included step-free access to the dwelling, large step-free showers, and bathroom and bedroom space on the ground floor. Qualitative findings also highlighted the importance of preparing for home modifications, such as reinforcing bathroom walls to support the post-build installation of grab rails. The most frequently needed modifications were for bathroom features, while structural changes to the dwelling were the most time-intensive modifications, requiring more than six weeks to be completed. CONCLUSIONS: External access to the home and internal access to bedroom and bathroom facilities can support aging in place and hospital discharge and mitigate the need for costly and time-intensive home modifications. While this study was conducted in Australia, the findings have relevance outside of this context, and are important for ensuring equitable accessibility for people with and without disabilities across the lifespan.

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.

Health Literacy: An Interactive Outcome Among Secondary Students in Beijing.

BACKGROUND: Health literacy enables a person to make good decisions regarding health care, disease prevention, and health promotion to maintain and improve health. Although health literacy research in China has gained increasing attention in recent years, most existing studies focus on adults rather than adolescents. In addition, little theory-driven empirical research has been conducted to fully understand the relationship among health literacy, its influencing factors, and health outcomes scored on a skills-based health literacy instrument. OBJECTIVE: This study applied Manganello's framework to investigate how health literacy was related to its antecedents and health status in secondary students in Beijing, China. METHODS: A cross-sectional study was conducted with 650 students in Years 7 to 9 (age 11-17 years) from four secondary schools. Students completed a self-administered questionnaire based on Manganello's health literacy framework, which measured key upstream determinants, including health literacy and self-report health status. Health literacy was measured on an 8-item skills-based instrument that assesses a person's ability to find, understand, appraise, and communicate health information in everyday life (scores range from 0-37). Descriptive statistics and path analysis were conducted to investigate the mediating role of health literacy in predicting health status. KEY RESULTS: Overall, the average scores of students' health literacy was 26.37 (±5.89). Manganello's framework was supported by the data collected (χ2/df = 2.049, p = .001, comparative fix index = 0.966, root mean square error of approximation = 0.041). Personal self-efficacy (r = 0.11, p = .007), social support (r = 0.18, p < .001), and school environment (r = 0.27, p < .001) predicted health literacy, which in turn predicted students' health status (r = 0.12, p = .005). CONCLUSIONS: Adolescent health literacy is not only a person's capability to protect health, but also an interactive outcome with the broader environment. Promoting health literacy could be a useful strategy to improve health status for adolescents; however, a holistic approach is needed to increase students' self-efficacy, promote social support, and create positive school environments to achieve optimal health literacy and health outcomes. [HLRP: Health Literacy Research and Practice. 2021;5(1):e1-e14.] PLAIN LANGUAGE SUMMARY: We investigated how health literacy was related to its influencing factors and health status among secondary students in Years 7 to 9 in Beijing, China. Students with low self-efficacy, low social support, and low perceptions of positive school environment were more likely to have low health literacy, which in turn predicted poor health status.

Health Literacy and Its Mediating Role in Predicting Health Behaviors Among Chinese Secondary Students.

While health literacy research in mainland China has gained increasing attention, most studies focus on adults. This study aimed to examine the mediating role of health literacy in the relationship between a range of upstream factors and health behaviors among Chinese secondary students. A cross-sectional study was conducted with 650 students in Years 7 to 9 from four secondary schools in Beijing. Based on an adapted health literacy framework from Manganello, a self-administered questionnaire was designed to collect information on upstream factors, health literacy, and health behaviors. Path analysis results showed that the proposed framework was mostly supported by empirical data after modification indices were examined and 3 direct paths were added. Students' self-efficacy, social support, and school environment were associated with health literacy, which in turn predicted health behaviors. A holistic approach is needed to improve both adolescent health literacy and health behaviors for Chinese school-aged adolescents.

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.

Adolescent Health Literacy in Beijing and Melbourne: A Cross-Cultural Comparison.

While adolescent health literacy has gained momentum, it is under-researched from a cross-cultural perspective. This study aims to compare health literacy among two cultural groups of secondary students in Beijing and Melbourne. A cross-sectional study was conducted with 770 students from five secondary schools in Beijing and Melbourne. A self-administered questionnaire was designed to collect information on health literacy (the eight-item health literacy assessment tool (HLAT-8), the Newest Vital Sign (NVS) and the 47-item Health Literacy Survey (HLS-47)), its antecedents and health outcomes. Overall, students' health literacy in Melbourne (n = 120) was higher than that in Beijing (n = 650): 28.25 ± 6.00 versus 26.37 ± 5.89 (HLAT-8); and 4.13 ± 1.73 versus 3.65 ± 1.64 (NVS). The proportion of students with low health literacy varied by instruments, representing 23.7-32.2% in Melbourne and 29.0%-45.5% in Beijing. In both cultural groups, students' self-efficacy, social support, and perceptions of school environment were associated with their health literacy, which in turn predicted their health behaviours, patient-provider communication and health status. Given the nature of our study design and small samples, a cautious conclusion would be that adolescent health literacy is sensitive to the broad cultural context and might be an interactive outcome influenced by an individual's health skills and the social environment. Particularly, creating a supportive school environment is critical to develop adolescent health literacy that would eventually contribute to better health outcomes.

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.

A Capacity Building Program to Improve the Self-Efficacy of Key Workers to Support the Well-Being of Parents of a Child With a Disability Accessing an Early Childhood Intervention Service: Protocol for a Stepped-Wedge Design Trial.

BACKGROUND: Early childhood intervention services support children with disabilities or developmental delays from birth to school entry with the aim to achieve optimal outcomes for children and their families. A transdisciplinary approach to delivering early childhood intervention, particularly the key worker model, is considered the best practice, where allied health professionals (eg, speech pathologists, physiotherapists, occupational therapists, psychologists, and special educators) and the family work together as a collaborative team to share information, knowledge, and skills across disciplinary boundaries, with a key worker coordinating and delivering most of the intervention to achieve the goals for the child and their family. Initial qualitative research demonstrated parents want their key worker to also support their mental well-being. Poor mental well-being of parents of a child with a disability is of relevance to key workers because of its association with poor child-related outcomes. One of the major challenges key workers report in supporting families is managing parent distress and, because of lack of confidence, is a secondary negative impact on their own well-being. OBJECTIVE: This trial has been developed in response to the negative cycle of low professional confidence to support parents' mental health, increased key worker stress, and high turnover of employees working within a disability service setting. METHODS: A stepped-wedge design is used to deliver and evaluate a capacity building intervention program, over a 9-month period, for key workers to improve both parent and staff mental well-being. The primary outcome is key workers' self-efficacy in supporting parental mental well-being. Secondary outcomes include manager self-efficacy in supporting key workers and staff perceptions of supervisory support, staff job-related mental well-being, parental satisfaction with their key worker, parental mental well-being, and cost-consequence of the program. RESULTS: This study was funded in October 2014, supported by an Australian National Health and Medical Research Council Partnership Project grant (Grant number 1076861). Focus groups and individual face-to-face interviews were conducted from February to November 2015 with 40 parents who have a child with a disability and 13 key workers to gain insight into how the disability service could better promote child and family health and well-being and to inform about the development of the trial. CONCLUSIONS: The stepped-wedge study design is practical and ethical for research with a vulnerable population group of parents of a child with a disability, providing high quality data with all participants exposed to the intervention by the end of the trial. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12617001530314; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372578 (Archived by WebCite at http://www.webcitation.org/76XjDavnG). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/12531.

Parent-observed thematic data on quality of life in children with autism spectrum disorder.

Domains of quality of life in children with autism spectrum disorder have not previously been explored and there has been no quality of life measure developed for this population. Our study investigated parent observations to identify the domains important to children with autism spectrum disorder who also had an intellectual disability. In all, 21 parents (19 mothers, 2 fathers) of children with autism spectrum disorder (aged 6-17 years) participated in a qualitative study to discuss their child's quality of life. Thematic analysis using a grounded theory framework was conducted and 10 domains emerged in relation to health and well-being, capacity to perform and develop skills in daily life, and connections with the community and environment. Unique aspects of quality of life included varying levels of social desire, consistency of routines, and time spent in nature and the outdoors, which are not comprehensively captured in existing measures. Parent observations provide an initial framework for understanding quality of life in autism spectrum disorder and support the development of a new measure for this population.

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.

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.

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.

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.

Measuring functional, interactive and critical health literacy of Chinese secondary school students: reliable, valid and feasible?

Health literacy is an increasingly important topic in the global context. In mainland China, health literacy measures mainly focus on health knowledge and practices or on the functional domain for adolescents. However, little is known about interactive and critical domains. This study aimed to adopt a skills-based and three-domain (functional, interactive and critical) instrument to measure health literacy in Chinese adolescents and to examine the status and determinants of each domain. Using a systematic review, the eight-item Health Literacy Assessment Tool (HLAT-8) was selected and translated from English to Chinese (c-HLAT-8). Following the translation process, a cross-sectional study was conducted in four secondary schools in Beijing, China. A total of 650 students in Years 7-9 were recruited to complete a self-administered questionnaire that assessed socio-demographics, self-efficacy, social support, school environment, community environment and health literacy. Results showed that the c-HLAT-8 had satisfactory reliability (Cronbach's α = 0.79; intra-class correlation coefficient = 0.72) and strong validity (translation validity index (TVI) ≥0.95; χ2/ df = 3.388, p < 0.001; comparative fit index = 0.975, Tucker and Lewis's index of fit = 0.945, normed fit index = 0.965, root mean error of approximation = 0.061; scores on the c-HLAT-8 were moderately correlated with the Health Literacy Study-Taiwan, but weakly with the Newest Vital Sign). Chinese students had an average score of 26.37 (±5.89) for the c-HLAT-8. When the determinants of each domain of health literacy were examined, social support was the strongest predictor of interactive and critical health literacy. On the contrary, self-efficacy and school environment played more dominant roles in predicting functional health literacy. The c-HLAT-8 was demonstrated to be a reliable, valid and feasible instrument for measuring functional, interactive and critical health literacy among Chinese students. The current findings indicate that increasing self-efficacy, social support and creating supportive environments are important for promoting health literacy in secondary school settings in China.