Economic evaluation of a trial exploring the effects of a web-based support tool for parents of children with juvenile idiopathic arthritis.

OBJECTIVE: To explore the cost-effectiveness of a web-based support tool for parents of children with Juvenile Idiopathic Arthritis. METHODS: A multi-centred randomised controlled trial was conducted in paediatric rheumatology centres in England. The WebParC intervention consisted of online information about JIA and its treatment and a toolkit using cognitive-behavioural therapy principles to support parents manage their child's JIA. An economic evaluation was performed alongside the trial involving 220 parents. The primary outcome was the self-report Pediatric Inventory for Parents measure of illness-related parenting stress, with two dimensions; difficulty and frequency. These measures along with costs were assessed post intervention at 4 months and 12 months. Costs were calculated for healthcare usage using a UK NHS economic perspective. Data was collected and analysed on the impact of caring costs on families. Uncertainty around cost effectiveness was explored using bootstrapping and cost-effectiveness acceptability curves. RESULTS: The intervention arm showed improved average Pediatric Inventory for Parents scores for the dimensions of frequency and difficulty, of 1.5 and 3.6 respectively at 4 months and. 0.35 and 0.39 at 12 months, representing improved PIP scores for the intervention arm. At both 4 and 12 month follow up the average total cost per case was higher in the control group when compared with the intervention arm with mean differences of £360 (95% CI £29.6 to £691) at 4 months and £203 (95% CI £16 to £390) at 12 months. The probability of the intervention being cost effective ranged between 49% and 54%. CONCLUSION: The WebParC intervention led to reductions in primary and secondary healthcare resource use and costs at 4 and 12 months. The intervention demonstrated particular savings for rheumatology services at both follow ups. Future economies of scale could be realised by health providers with increased opportunities for cost effectiveness over time. TRIAL REGISTRATION: ISRCTN, ISRCTN13159730.

Parent Support for Physical Activity and Motor Skills During Early Childhood: A Mixed-Methods Application of the Multi-process Action Control Framework.

BACKGROUND: Promoting physical activity (PA) and fundamental movement skills (FMS) in early childhood is necessary to address the high rates of inactivity in children. Parent support is a determinant of PA in children, however, parental intentions to support are not always translated into behavior resulting in an intention-behavior gap. PURPOSE: Positioned within the multi-process action control (M-PAC) framework, this study used an explanatory concurrent mixed-methods design to explore parents' intentions and support of PA and FMS during early childhood. METHODS: Parents (N=124) of children aged 3-4 years completed an online survey consisting of items assessing reflective (e.g., attitudes), regulatory (e.g., planning), and reflexive (e.g., habit) processes of M-PAC and intentions and support for child PA and FMS. A subset of parents (n=20) completed a semi-structured online interview guided by the M-PAC framework. RESULTS: Significantly more parents intended to support PA (71%) compared with FMS (44%; p<0.001) and successfully translated intentions into action for PA (57%) compared with FMS (27%; p<0.001). Discriminant function analysis showed parent behavior profiles for PA and FMS support were associated with a combination of reflective, regulatory, and reflexive processes, however, these differed based on support behavior. Qualitative findings highlighted parents' differential views on PA and FMS support and contextualized the psychological processes associated with each. CONCLUSIONS: Parent PA support interventions during early childhood should include strategies for supporting FMS. Interventions should prioritize fostering a combination of reflective, regulatory, and reflexive behaviors to translate intentions to support PA and FMS into behavior among parents of young children.

Promoting physical activity (PA) and fundamental movement skills (FMS) in early childhood is necessary to address physical inactivity in young children. Parent support is a known predictor of PA in children, however, parents who intend to support PA do not always follow through with these intentions. This is referred to as the intention­behavior gap. Applying the theoretical tenets of the multi-process action control framework, this study surveyed 124 parents of children aged 3­4 years on reflective (e.g., attitudes), regulatory (e.g., planning), and reflexive (e.g., habit) processes, intentions, and behaviors related to parent PA and FMS support. Follow-up interviews were completed with 20 parents to gain a deeper understanding of parent PA and FMS support behaviors. Survey findings showed that parents' intentions and support behaviors for their child's PA and FMS were associated with a combination of reflective, regulatory, and reflexive processes. Interview findings highlighted more favorable parent perspectives toward PA support compared with FMS and further explained the psychological processes associated with each. Future parent PA support interventions during early childhood should include FMS support strategies and foster a combination of reflective, regulatory, and reflexive behaviors to bridge the gap between intentions and support behaviors among parents of young children.

A cost-effectiveness analysis of a universal, preventative-focused, parent and infant programme.

BACKGROUND: This study assessed whether a relatively newly developed Parent and Infant (PIN) parenting support programme was cost-effective when compared to services as usual (SAU). METHODS: The cost-effectiveness of the PIN programme versus SAU was assessed from an Irish health and social care perspective over a 24-month timeframe and within the context of a non-randomised, controlled before-and-after trial. In total, 163 parent-infant dyads were included in the study (86 intervention, 77 control). The primary outcome measure for the economic evaluation was the Parenting Sense of Competence Scale (PSOC). RESULTS: The average cost of the PIN programme was €647 per dyad. The mean (SE) cost (including programme costs) was €7,027 (SE €1,345) compared to €4,811 (SE €593) in the control arm, generating a (non-significant) mean cost difference of €2,216 (bootstrap 95% CI -€665 to €5,096; p = 0.14). The mean incremental cost-effectiveness of the PIN service was €614 per PSOC unit gained (bootstrap 95% CI €54 to €1,481). The probability that the PIN programme was cost-effective, was 87% at a willingness-to-pay of €1,000 per one unit change in the PSOC. CONCLUSIONS: Our findings suggest that the PIN programme was cost-effective at a relatively low willingness-to-pay threshold when compared to SAU. This study addresses a significant knowledge gap in the field of early intervention by providing important real world evidence on the implementation costs and cost-effectiveness of a universal early years parenting programme. The challenges involved in assessing the cost-effectiveness of preventative interventions for very young children and their parents are also discussed. TRIAL REGISTRATION: ISRCTN17488830 (Date of registration: 27/11/15). This trial was retrospectively registered.

Longitudinal associations between Latine parents' support and their adolescents' science motivation and STEM career expectations.

INTRODUCTION: Parents' science support and adolescents' motivational beliefs are associated with adolescents' expectations for their future occupations; however, these associations have been mostly investigated among White, middle-class samples. Framed by situated expectancy-value theory, the current study investigated: (1) the associations between parents' science support in 9th grade and Latine adolescents' science intrinsic value, utility value, and STEM career expectations in 11th grade, and (2) whether these indicators and the relations among them differed by adolescents' gender and parents' education. METHODS: Study participants included Latine adolescents (n = 3060; Mage = 14.4 years old; 49% female) in the United States from the High School Longitudinal Study of 2009. RESULTS: Analyses revealed a significant, positive association between parents' science support and Latine adolescents' science utility value. Additionally, there was a significant, positive association between parents' science support and Latinas' science intrinsic value, but not for Latinos' science intrinsic value. Latine adolescents' science utility value, but not their science intrinsic value, predicted their concurrent STEM career expectations. Though there were no significant mean level differences in adolescents' science utility value or parents' science support based on adolescents' gender, the measure of adolescents' science intrinsic value varied across girls and boys. Finally, adolescents whose parents had a college degree received greater science support from parents compared to adolescents whose parents had less education than a college degree. CONCLUSION: Findings suggest parents' science support and adolescents' intrinsic and utility values have potential associations with Latine adolescents' STEM career expectations near the end of high school.

Exploring individual parent-to-parent support interventions for parents caring for children with brain-based developmental disabilities: A scoping review.

BACKGROUND: Brain-based developmental disabilities (BBDDs) comprise a large and heterogeneous group of disorders including autism, intellectual disability, cerebral palsy or genetic and neurodevelopmental disorders. Parents caring for a child with BBDD face multiple challenges that cause increased stress and high risk of mental health problems. Peer-based support by fellow parents for a various range of patient groups has shown potential to provide emotional, psychological and practical support. Here, we aim to explore existing literature on individual peer-to-peer support (iP2PS) interventions for parents caring for children with BBDD with a view to (1) explore the impact of iP2PS interventions on parents and (2) identify challenges and facilitators of iP2PS. METHOD: An extensive literature search (January 2023) was performed, and a thematic analysis was conducted to synthesize findings. RESULTS: Fourteen relevant articles revealed three major themes regarding the impact of iP2PS on parents: (1) emotional and psychological well-being, (2) quality of life and (3) practical issues. Four themes were identified describing challenges and facilitators of iP2PS: (1) benefits and burden of giving support, (2) matching parent-pairs, (3) logistic challenges and solutions and (4) training and supervision of parents providing peer support. CONCLUSIONS: This review revealed that iP2PS has a positive impact on the emotional and psychological well-being of parents, as well as the overall quality of life for families caring for a child with a BBDD. Individual P2PS offers peer-parents an opportunity to support others who are facing challenges similar to those they have experienced themselves. However, many questions still need to be addressed regarding benefits of different iP2PS styles, methods of tailoring support to individual needs and necessity of training and supervision for peer support providers. Future research should focus on defining these components and evaluating benefits to establish effective iP2PS that can be provided as standard care practice for parents.

"I struggle at times to see her struggle": Mothers' perspectives on dyslexia-related school struggles and the inter-connected nature of mother and child well-being.

INTRODUCTION: Parents of children with dyslexia may be at elevated risk for parenting stress and mental health concerns. Our aim was to explore the emotional experience of growing up with dyslexia in Australia from parents' perspectives. In so doing, we also developed an understanding of parents' own mental health and support needs informed by their lived experience. METHODOLOGY: Seventeen interviews with mothers of children (9-14 years; 16 with a diagnosis of dyslexia) were analysed using Braun and Clarke's reflexive thematic analysis approach. ANALYSIS: Five themes were developed to address our aim: Theme 1: Years in the wilderness: Life before diagnosis; 2: "I struggle at times to see her struggle"; 3. School struggles: Advocating for our children and managing distress; 4. "It's a full-time job" and a "long slog"; 5: Care for the carer: Social support and coping strategies. CONCLUSIONS: Our analysis suggests that mothers of children with dyslexia may be at elevated risk for mental health concerns. Specifically, chronic worry and stress, secondary distress, challenges to parenting self-efficacy, and lack of support and understanding (feeling isolated) were highlighted as plausible risk factors. Mothers described coping strategies at the community level (e.g., school connectedness) and at the individual level (e.g., "acceptance") as protective.

Internet-based interventions for parents with children 0-5 years: A scoping review.

AIM: This study aims to review the existing literature on Internet-based health interventions directed to support parents of children aged 0-5 years. METHODS: We systematically searched electronic databases between January 2000 and 2018. The search consisted of terms describing eHealth, intervention and families and/or children. RESULTS: Internet-based parent support interventions were most often directed at rehabilitation and selective prevention, and we identified more studies on mental health (57%) than somatic health (41%). Developmental disorders were the most frequently studied mental health condition (n = 33), while interventions for obesity (15%) were the most studied somatic health condition. Forty-four percent of mental health studies were RCTs and 65% of interventions were theory driven. Interventions most often used a behavioural approach, included guidance and delivered content via text-based information. CONCLUSION: Several significant gaps were identified such as the need for more research outside of English-speaking countries, more systematic reviews and effect studies. This review also elucidates the need for researchers to improve reporting on the theoretical approaches employed in interventions, and to focus on determining the importance of guidance. Finally, program developers should consider using more audio-visual technology to avoid reinforcing social inequalities in access to healthcare.

Swedish parents' satisfaction and experience of facilitators and barriers with Family Check-up: A mixed methods study.

Family Check-up (FCU) was introduced in Sweden more than a decade ago. Little is known about what parents experience as FCU's key mechanisms leading to changes in parenting. The aim of this study was to investigate Swedish parents' satisfaction with FCU, and their experiences of facilitators and barriers for making changes in their parenting. A mixed methods approach was employed using a parent satisfaction questionnaire (n = 77) and focus groups (n = 15). General satisfaction with FCU was adequate, with an average rating of 4 on a five-point scale (range 3.1-4.6). The analysis of quantitative and qualitative data resulted in eight themes representing facilitators and four themes representing barriers, organized into three categories: (1) access and engagement; (2) therapeutic process; and (3) program components. Ease of access to FCU facilitated initial engagement. Individual tailoring and access to FCU during different phases of change facilitated sustained engagement and change. Therapeutic process facilitators were a meaningful, supportive relationship with the provider, psychological benefits for parents and benefits for the whole family. Program components that facilitated change in parenting were new learning of parenting strategies and use of helpful techniques such as videotaping and home practice. Negative experiences with service systems prior to starting FCU, parent psychological barriers, and parent-provider mismatch were described as potential barriers. Some parents desired other program formats that were not offered, and some felt that new learning was insufficient to improve child behavior. Understanding the parent perspective can contribute to successful future work with implementing FCU.

Feasibility of school-based parent support groups for transition-aged youth with intellectual disabilities.

BACKGROUND: Parents experience difficulties supporting children with intellectual disabilities when they exit the school system. One promising way to mitigate this problem is to set up school-based parent support groups. This study aimed to examine the development and feasibility of school-based parent support groups in South Korea designed to connect parents of transition-aged youth with intellectual disabilities. METHODS: This qualitative study included 29 participants. Five focus groups and seven individual interviews were conducted with parents as co-researchers. Data were analysed using thematic analysis. RESULTS: Participants reported meaningful experiences after participating in the parent support groups. However, it is critical to consider the following components to promote their feasibility: clearly defined roles, small group meetings, school-based initiatives, and collaboration. CONCLUSIONS: Parent support groups could be a valuable way to promote parental empowerment. Implications for future practices are suggested.

Longitudinal associations between parent degree/occupation, parent support, and adolescent motivational beliefs in STEM.

INTRODUCTION: The United States struggles with racial/ethnic disparities in STEM (science, technology, engineering, mathematics) degrees and occupations. According to situated expectancy-value theory, the experience and knowledge parents gain through STEM degrees and occupations shape the STEM support they provide and relatedly their adolescents' STEM motivational beliefs. METHODS: We analyzed data from the High School Longitudinal Study (N = 14,000; 50% female; Mage = 14 years old at 9th grade), which is a recent U.S. data set that surveyed a nationally representative sample of adolescents. RESULTS AND CONCLUSIONS: Results showed that parent STEM support in 9th grade and adolescent STEM motivational beliefs in 11th grade were lower in families where parents did not have a STEM degree/occupation than in families where at least one parent had a STEM degree/occupation. Our within-group analyses suggested that parents' STEM support was generally positively related to adolescents' STEM motivational beliefs among families where parents did not have a STEM degree/occupation for all racial/ethnic groups except Black adolescents. However, these relations were not significant among adolescents who had a parent STEM degree/occupation. Furthermore, although Asian and White adolescents' parents were more likely to hold a STEM degree/occupation than Latina/o and Black adolescents' parents, the associations between parent STEM support and adolescents' STEM motivational beliefs emerged for Asian, Latina/o, and White adolescents.

Perceptions of Positive Parenting Predict Increases in Resilience for Low Neurotic and High Agreeable Adolescents.

This study examines whether adolescent personality moderates longitudinal associations between perceived parenting practices and changes in adolescent resilience. A community sample of 442 (224 boys, 218 girls) Lithuanian adolescents completed surveys twice, one year apart, beginning in Grade 11 (M=17.1 years old). Adolescent self-reports described resilience, personality (neuroticism and agreeableness), and perceptions of positive parenting (support and monitoring). Adolescent personality moderated associations between initial perceptions of parenting and changes in resilience. Monitoring and support anticipated greater resilience for adolescents low but not high on neuroticism. Monitoring also anticipated greater resilience for adolescents high but not low on agreeableness. Consistent with the vantage-resistance hypothesis, the results suggest that neuroticism and disagreeableness interfere with the child's ability to profit from positive environmental experiences.

Developing a Needs Assessment Process to Address Gaps in a Local System of Care.

Early diagnosis and access to behavioral health services can improve the health outcomes for young children suffering from mental illness. Often, children and their families' behavioral health needs are not met due to a broken local system of care. Developing a deep understanding of the situation by exploring all stakeholders' needs across a community in conjunction with a comprehensive review of the existing scientific literature prepared one rural midwestern county to build a better local system of care. This study's unique aspects include visual mapping using art in focus groups and close collaboration between a public mental health board, academic faculty, student researchers, local behavioral health organizations, and schools. Major themes found about the existing barriers were dysfunctional patterns in families, lack of resources, reliance on the school system, and lack of access to healthcare professionals. Other communities can use this approach as a model for a local needs assessment.

Adjunctive Parental Support Within Manualized Parent Training for Children with Autism Spectrum Disorder.

Parent training is a central focus of behavioral intervention, with emphasis on teaching parents to become change agents for their children by using behavioral management skills. However, its effectiveness is limited by a parent's ability to engage in the learning process. Parents managing external stressors, psychopathology, or poverty often do not gain the skills and thus, the treatment may minimally impacts parent and child behavior. In order to increase a parent's ability to acquire and implement new skills accurately, referred to as parent treatment integrity, the current study added a parent-support component to the RUBI Autism Network's Parent Training for Disruptive Behaviors protocol. The parent-support component was intended to remove barriers to skill acquisition during the parent training session by alleviating some of the interfering parental stress. In an alternating treatments design, a community-based sample of five parent-child dyads (average age of child = 32 months) participated in the parent-training protocol; half of the intervention sessions included a 15-min parent-support component. The addition of the parent-support component increased parent engagement, treatment integrity, and learned parenting skills, like parent praise. Results support a model of change for parenting behavior. Inclusion of a parent-support component is supported as an effective practice for parent training.

Child health care nurses' experiences of language barriers during home visits.

OBJECTIVE: The aim of the study was to explore the communication tools that child healthcare nurses can use during home visits to families when language barriers exist. DESIGN: Qualitative study using data collected from focus group sessions. SAMPLE: Six semi-structured focus group interviews with twenty nurses in child healthcare services. MEASUREMENTS: The results were analyzed with a thematic content analysis. RESULTS: The analysis resulted in two themes: Using pictures as support in the conversation, with subthemes Not using pictures as support, Wanting to know how to use pictures as support, Pictures as support for invitations, Different types of pictures as support, and Alternative means of communication with the subthemes Possibilities of using an interpreter, Obstacles to using an interpreter, Mixed communication. CONCLUSION: If language barriers are present during home visits, decision-making nurses in Child Health Care (CHC) put families in an unequal position when communicating with them. These results point to a need for more education, guidelines and support regarding alternative and augmentative communication (AAC) tools and structures to assist in overcoming language barriers.

Mediators of the Relation of Family Income with Adolescent Behavior Problems and Cognitive Achievement: Material Hardship, Parent Distress and Parent Support.

Structural equation modeling (SEM) with longitudinal survey data was used to test a proposed developmental model of the association of family income (with children aged 6-9) to parent behaviors (for children at 10 years of age) and adolescent cognitive achievement and behavior problems (at age 15). Data from the Child Development Supplement (CDS) and Panel Study of Income Dynamics (PSID) provided a representative US sample (n = 953). The SEM measurement model of parent behaviors showed two robust latent variables representing parent distress (based on two measures) and parent support (composed of four measures of parent investment, cognitive stimulation, emotional warmth, and educational expectations for the child). The SEM structural model indicated that the relation between average family income between 1998 and 2001 for young children (ages 6-9) and adolescent cognitive achievement and behavior problems in 2007 (age 15) was almost entirely mediated by parent distress, parent support and material hardship, all measured in 2002. Results suggested that the structural model was strongest (RMSEA = .08) when all three mediating variables were included. These results provide a clearer picture of the developmental mechanisms by which family income becomes associated with adolescent cognitive achievement and behavior problems over time.

The contributions of careful clinical observations: A legacy.

Clinical Medicine is an Art which is learned, together with hard work, as an apprentice-observing how a master works, and improving with experience and exposure. Clinicians are performing multiple things at the same time-trying to make a diagnosis, providing best therapies and preventative strategies, and looking for the underlying mechanism(s). Families want to know what to expect over time-the natural history of their disorder. Rare disease networks and parent support groups are helping in this effort. Information technologies and international collaborative efforts are changing the way clinical genetics is provided.

A systematic scoping review of early interventions for parents of deaf infants.

BACKGROUND: Over 90% of the 50,000 deaf children in the UK have hearing parents, many of whom were not expecting a deaf child and may require specialist support. Deaf children can experience poorer long-term outcomes than hearing children across a range of domains. After early detection by the Universal Newborn Hearing Screening Programme, parents in the UK receive support from Qualified Teachers of the Deaf and audiologists but resources are tight and intervention support can vary by locality. There are challenges faced due to a lack of clarity around what specific parenting support interventions are most helpful. METHODS: The aim of this research was to complete a systematic scoping review of the evidence to identify early support interventions for parents of deaf infants. From 5577 identified records, 54 met inclusion criteria. Two reviewers screened papers through three rounds before completing data extraction and quality assessment. RESULTS: Identified parent support interventions included both group and individual sessions in various settings (including online). They were led by a range of professionals and targeted various outcomes. Internationally there were only five randomised controlled trials. Other designs included non-randomised comparison groups, pre / post and other designs e.g. longitudinal, qualitative and case studies. Quality assessment showed few high quality studies with most having some concerns over risk of bias. CONCLUSION: Interventions commonly focused on infant language and communication followed by parental knowledge and skills; parent wellbeing and empowerment; and parent/child relationship. There were no interventions that focused specifically on parent support to understand or nurture child socio-emotional development despite this being a well-established area of poor outcome for deaf children. There were few UK studies and research generally was not of high quality. Many studies were not recent and so not in the context of recent healthcare advances. Further research in this area is urgently needed to help develop evidence based early interventions.

Fidelity of Motivational Interviewing in School-Based Intervention and Research.

Educational researchers and school-based practitioners are increasingly infusing motivational interviewing (MI) into new and existing intervention protocols to provide support to students, parents, teachers, and school administrators. To date, however, the majority of the research in this area has focused on feasibility of implementation rather than fidelity of implementation. In this manuscript, we will present MI fidelity data from 245 audio-recorded conversations with 113 unique caregivers and 20 coaches, who implemented a school-based, positive parenting intervention. The aggregate fidelity scores across coaches, parents, and sessions provide evidence the training and support procedures were effective in assisting school-based personnel to implement MI with reasonable levels of fidelity in practice settings. Further, results suggest that MI fidelity varied between sessions and coaches and that within-coach variation (e.g., session-level variation in the quality of MI delivered) greatly exceeded between-coach variation. Implications for practice and future research are discussed.

Ability self-concepts and parental support may protect adolescents when they experience low support from their math teachers.

INTRODUCTION: Experiencing low support from teachers can be associated with low academic achievement. Nonetheless, individual- (i.e., ability self-concepts) and contextual-level (i.e., parental support) protective factors may help adolescents to display academic resilience. This study examined whether high school students' math ability self-concepts and parental support can mitigate the possible negative association between perceived low math teacher support and their math achievement. METHOD: Correlational data were drawn from the High School Longitudinal Study (N = 14,580, Mage = 17.42 in 11th grade, 51% female), a nationally representative study of high school students in the U.S. The measures of protective factors (i.e., math ability self-concepts and parental support) were obtained from the surveys administered to students and parents in 9th grade. Students' perceived teacher support and their math achievement score were measured in 11th grade. A series of linear regression analyses were estimated to test our hypotheses. RESULTS & CONCLUSIONS: Perceived low teacher support was negatively associated with adolescents' math achievement. Adolescents' math ability self-concepts were directly and positively associated with their math achievement. The interaction between perceived low teacher support and ability self-concepts in predicting adolescents' achievement varied by parental support. The association between perceived low teacher support and adolescents' math achievement was not statistically significant when adolescents were high on one of the protective factors. That is, high parental support may be protective for adolescents with low math ability self-concepts. This study highlights the interaction between adolescents' academic motivation and parental support in demonstrating resilience to perceived low teacher support.

Hearing care and management priority among parents of children with Down syndrome: a grounded theory.

OBJECTIVE: This study qualitatively explored the factors that influence how parents of children who are Deaf or hard-of-hearing with Down syndrome prioritise hearing care and management and developed an associated theory to explain that priority. DESIGN: Grounded theory was used for the purposes of this qualitative study. Data were collected using in-depth interviews which were analysed using a three-tiered qualitative coding process. STUDY SAMPLE: Eighteen mothers of children who are Deaf or hard-of-hearing with Down syndrome participated in this study. RESULTS: The higher the extent of engaged professional support, perception of benefit for child, parent activation, and family engagement, the higher the priority for hearing care and management will likely be among parents of children who are Deaf or hard-of-hearing with Down syndrome. CONCLUSIONS: Understanding how parents of children who are Deaf or hard-of-hearing with Down syndrome decide to prioritise hearing care and management has implications for how hearing health providers and others provide care to parents to enhance priority for hearing-related needs.