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This study aimed to examine physical activity (PA) levels and mental health status (i.e., anxiety and depression) among parents of children with autism spectrum disorder (ASD). Secondary data analysis was conducted using the 2018 National Health Interview Survey. We identified 139 parents of children with ASD and 4,470 parents of children with no disability. Their PA levels, anxiety, and depression were analyzed. Compared with parents of children with no disability, parents of children with ASD were significantly less likely to meet the PA guideline for Americans and had lower odds of vigorous PA (aOR = 0.702), strengthening PA (aOR = 0.885), and light to moderate PA (aOR = 0.994). Parents of children with ASD reported significantly higher odds of anxiety (aOR = 1.559) and depression (aOR = 1.885). This study revealed lower PA levels and higher risks of anxiety and depression in parents of children with ASD. [ABSTRACT FROM AUTHOR]

Purpose: This study explores the underutilized pedagogical approach of incorporating lived experiences of parents with children possessing diverse hearing profiles and their family characteristics into the audiology curriculum for students. The aim was to investigate the impact of integrating such experiences into the classroom as an andragogical learning experience through the qualitative analysis of written student reflections. Method: Twelve (N = 12) third-year female audiology students enrolled in a pediatric auditory (re)habilitation course attended a parent panel presentation during their regularly scheduled face-to-face class. Five parents of children with diverse hearing differences and diverse technology, communication, and educational choices participated on the panel as guest speakers via the Zoom platform. Students completed written reflections based on Rolfe's reflective framework. Written reflections were downloaded from Canvas and de-identified prior to uploading to NVivo software for coding, utilizing an inductive grounded theory coding strategy coupled with content analysis. Findings: This study underscores the effectiveness of written reflections as an effective andragogical learning model. Through reflective practice, students gained a deeper understanding of their experiences, values, and learning journeys, enhancing their competency in pediatric audiology and auditory (re)habilitation. Students articulated previous knowledge and learning experiences, utilized newfound insights from exposure to the parent panel of shared lived experiences, and connected this knowledge with future clinical applications. Conclusions: Key findings underscore the effectiveness of reflective practice as an andragogical learning model, facilitating the integration of prior experiences with new knowledge. Moreover, it aids the transition of the professional journey from the familiar to the unfamiliar, demonstrating the impact of combining real-world lived experiences to reinforce and highlight classroom topics. Additionally, reflective practice enhances professional efficacy by valuing patient/parent perspectives regarding clinical care and aligning with evidence-based principles. [ABSTRACT FROM AUTHOR]

Objective: The age of identification of hearing loss in children is highly influenced by the hearing help seeking behaviour of their parents, particularly in countries without universal newborn hearing screening programs. In this study, an attempt was made to identify the factors associated with help seeking behaviour in parents of children with hearing loss, and the relationship of such factors with the age of identification of hearing loss. Design: Focus group discussions based on the framework of health belief model were carried out. The discussions were transcribed and the transcripts were thematically analysed. Study sample: Participants were 35 parents of children with hearing loss from the state of Karnataka in India. Results: The findings revealed 30 factors related to their awareness about hearing loss, geographical location, socio-economic status, family, and society. The factors differed between early and late help seekers. Conclusions: Awareness, accessibility, and affordability are the key factors that influenced the hearing help seeking behaviour of the participants. Effective public awareness programs, newborn hearing screening programs, and provisions to make hearing healthcare affordable to all can reduce the age of identification of paediatric hearing loss in India. [ABSTRACT FROM AUTHOR]

Currently, there are no existing measures to screen for or diagnose Social (Pragmatic) Communication Disorder (SPCD). We conducted an exploratory factor analysis (EFA) of the Social Communication Disorder Screener (SCDS), a 14-item, parent-report measure based on the DSM-5 diagnostic criteria for SPCD. This EFA examined the internal consistency and factor structure of the SCDS for a sample of 500 parents of children, ages 5–18 years, representative of the U.S. census. Results yielded a correlated three-factor solution with good internal consistency reliability. Findings supported the presence of three subscale as well as the derivation of a total composite score reflecting overall verbal and non-verbal communication and limitations across contexts. Clinical and research implications are discussed. [ABSTRACT FROM AUTHOR]

Little is known about care providers' expectations for children with autism spectrum disorders (ASD) and intellectual disabilities (ID) in Ghana. This study used group concept mapping (n = 9) and a quantitative survey (n = 128) to explore and compare service providers' and parents' expectations for children with ASD or ID. Data were analyzed using hierarchical clustering procedures and Multivariate Analysis of Variance (MANOVA). Concept mapping results revealed several expectation clusters, including independence, love and acceptance, equal social rights and opportunities, and professional and caregiver training. MANOVA results revealed significant differences between parents, teachers, and healthcare providers in their perceptions of the importance and likelihood of a child achieving these expectations. Results are discussed in reference to the cultural context, and implications are outlined. [ABSTRACT FROM AUTHOR]

This review aims to systematically summarize existing evidence to determine the effectiveness of cognitive-based interventions (CBIs) on psychological health and well-being among parents of children with developmental disabilities (DD). Six databases were searched to identify eligible randomized controlled trials (RCTs) from their inception to April 2023. The revised Cochrane Risk of Bias tool for RCTs was applied to assess the risk of bias and the certainty of evidence was evaluated using the Grading of Recommendation, Assessment, Development and Evaluation. Meta-analyses were conducted using a random-effects model. Twenty-five RCTs involving 1915 participants were identified. The results indicated that CBIs reduced parental stress levels (Hedges' g = − 0.69), depressive symptoms (g = − 0.95), anxiety levels (g = − 0.78), and parental distress (g = − 0.29), and improved parental well-being (g = 0.62) and parent‒child relationships (g = 0.43) postintervention compared with the active/inactive control groups. Subgroup analysis of the effectiveness of interventions using mindfulness-based interventions and cognitive behavioural therapy showed positive effects. The favourable intervention duration and participant targets were also identified in this review. Furthermore, the effects of CBIs were impacted by the different types of DD among the children. This review highlighted the positive effects of CBIs on parental stress levels, depressive symptoms, anxiety levels, parental distress levels, parental well-being levels, and parent‒child relationships. Future well-designed RCTs are needed to further investigate the effects of MBIs and CBT interventions on children with DD and their parents, as well as the factors and mechanisms of action affecting the efficacy of these interventions. [ABSTRACT FROM AUTHOR]

Therapeutic playgroups have potential to benefit families and children enrolled in early intervention. A pretest–posttest, mixed methods, sequential explanatory design was utilized to explore the effectiveness and feasibility of an 8-week SEE Me (Social Emotional Education) therapeutic playgroup delivered by a collaborative team of providers using a convenience sample of 28 parent and child dyad participants and 19 early intervention providers. Results indicated statistically significant improvements in parent efficacy and parent–child interaction (affection and responsiveness) following participation. Parents and providers highlighted the role of the parent and reported improvements in child engagement, social interaction, and skill development in successful playgroups. Play activities and objects, facilitator support, and parent capacity were rated as supports for feasible delivery; challenges included child engagement and program implementation. These results provide preliminary evidence for both the effectiveness and feasibility of providing therapeutic playgroups as part of comprehensive early intervention services. [ABSTRACT FROM AUTHOR]

Parents of children with a disability experience elevated levels of stress compared to parents of typically developing children, which represents a risk for their couple relationship. Research on families where a child has a disability is principally based on mothers. More knowledge is needed about the paternal perspective. We conducted semi-structured interviews with seven fathers (aged 36–54 years) of children with a disability (primary school age to early twenties). We analyzed the material using qualitative conventional content analysis, focusing on participants' descriptions of couple relationships. We categorized the participants' descriptions in two main categories: Couplehood and Co-parenting. Throughout the material, partners were described as romantic partners, co-parents, and collaborators. Participants described that couple communication and emotional expression within couples were affected by parenting a child with a disability. Moreover, participants described influence by cultural masculinity norms on their involvement as partners and parents, and on the dynamic within their couple relationships. An uneven division of labor was described. A practice implication is that communication and emotional expression styles within the parental couple should be a key focus when working with families of children with a disability. The findings also suggest more active involvement of fathers in children's health care. [ABSTRACT FROM AUTHOR]

The purposes of the present study were a) to evaluate the construct validity of a questionnaire measuring parental physical activity (PA) orientation, and b) to examine the association between constructs of parental PA orientation and parental explicit PA modelling in parents of young children with disabilities. One hundred and thirty-five participants completed an online questionnaire. Exploratory factor analysis was used to examine the construct validity of a questionnaire for parental PA orientation. Exploratory factor analysis for parental PA orientation revealed a four-factor solution, accounting for 59.02% of the variance with eigenvalues of 7.14, 6.88, 4.00, and 2.35 for factor 1 (parent-perceived motor performance of their child), factor 2 (parental enjoyment of PA), factor 3 (parental importance of PA), and factor 4 (parental awareness of accessible PA program), respectively. Two hierarchical multiple regression models were developed and used to examine the association between constructs of parental PA orientation and parental explicit PA modelling. Parental enjoyment and importance of PA were significant factors predicting parental explicit PA modelling, controlling for child's age and parent's age. The results of the current study may be used for resources when developing an intervention for parental explicit PA modelling in parents of children with disabilities. [ABSTRACT FROM AUTHOR]

The aim of the current study was to investigate the influence of stress inoculation training (SIT) on the general health of mothers of children with visual impairments. The study population included the mothers of children with visual impairments aged 33–45 years during 2018–2019 academic year in Isfahan city. The participants were 34 mothers selected by convenient sampling method from Shahid Samani and Shahid Abedi schools. They were randomly divided into experimental (n = 17) and control (n = 17) groups. The experimental group received SIT in 10 sessions, while the control group did not. The instrument of study was General Health Questionnaire (Goldberg and Hiller, 1979). Data were analysed by using MANCOVA. The results indicated that the SIT had a significant effect on post-test scores of general health (P < 0.0001) in subjects. Based on these findings, SIT plays a critical role in the general health of the mothers of children with visual impairments. [ABSTRACT FROM AUTHOR]

Prior studies on Japanese parents raising children with developmental disorders have predominantly emphasized negative psychological aspects like parenting conflicts and challenges. Purpose of this study was to construct a conceptual model to aid mothers in parenting children with developmental disorders by identifying effective parenting strategies. In this qualitative study, participants were mothers who engaged in a home program through individual outpatient occupational therapy. Therapy sessions occurred biweekly, totaling 12 sessions, each lasting 40 min. Data collection involved semi-structured interviews, and the data were analyzed through the Modified Grounded Theory Approach. Analysis of mothers' narratives revealed heightened physical burden, psychological distress, severe stress, and social isolation. Our findings highlight those mothers who engaged in the home program navigated the intricate parenting landscape through problem-solving, including managing negative emotions, their demanding schedules, and societal norms. This study offers insights into the perceptions, experiences, and behaviors of families in supporting the development of parenting strategies within the family. Occupational therapy should prioritize evaluating a mother's parenting context and her interactions with her environment. Furthermore, it is crucial to provide support for her to independently formulate suitable parenting strategies that resonate with the specific circumstances of her family. [ABSTRACT FROM AUTHOR]

Importance: Care partners' involvement is a key feature of the Cognitive Orientation to daily Occupational Performance (CO-OP) approach that can enhance rehabilitation outcomes and promote the generalization and transfer of strategies and skills to everyday life. Gaining insight into care partners' experience with their child's CO-OP intervention is critical to understanding how to enhance care partners' involvement. Objective: To gain insight into the experience of care partners whose child with acquired brain injury (ABI) participated in CO-OP intervention. Method: A qualitative descriptive research design was used. Semistructured interviews were conducted at three time points (immediate postintervention and at 2 and 6 mo postintervention). Setting: Two rehabilitation centers. Participants: Thirteen care partners of 12 children or youth with severe ABI. Results: Three themes emerged from the analysis of 33 interviews: (1) The child is an active agent in their therapy, (2) the care partner is the keystone who helps solidify the elements of CO-OP, and (3) CO-OP mastery requires time and practice, and its use evolves over time. Conclusions and Relevance: These themes highlight the progressive nature of proficiency in CO-OP for both care partners and children. This was evident not only in the children's improvement in task performance, but also in their ability to problem solve. Care partners' role in supporting the CO-OP approach also unfolds over time as their confidence in their child's problem-solving abilities, and in their own ability to adequately provide guidance, increases. Engagement seems to be central in facilitating this progression for both children and their care partners. Plain-Language Summary: This is the first study to provide insights into the involvement of care partners in the Cognitive Orientation to daily Occupational Performance (CO-OP) approach for children and youth with executive function deficits after acquired brain injury. This is also the first study to explore the evolution of care partners' experiences over time. Involving care partners is a key feature of the CO-OP. Understanding care partners' experiences with their child's CO-OP intervention can improve a child's rehabilitation outcomes. The study found that care partners' role in supporting their child's CO-OP approach improved over time as their confidence in their child's problem-solving abilities increased. The care partners' own ability to adequately provide guidance to their child also increased over time. Engagement seems to be central in facilitating this progression for both children and their care partners. It is hoped that occupational therapists will consider the findings of this study to better support care partners in implementing the CO-OP approach with their child in their real-life context. Care partners' role in supporting their child's engagement with the Cognitive Orientation to daily Occupational Performance (CO-OP) occupational therapy approach improved over time as their confidence in their child's problem-solving abilities increased. [ABSTRACT FROM AUTHOR]

The aim of the present study was to compare the social support in parents of children with neurodevelopmental disorders. The sample consisted of 166 parents of children with neurodevelopmental disorders in Isfahan, Iran. Medical Outcomes Study Social Support Survey (MOS-SSS, Sherbourne and Stewart 1991) was used for measuring the availability of social support. The collected data were analyzed using two-way analysis of variance and multivariate analysis of variance. The results showed that there was no significant difference in social support scores between parents of children with neurodevelopmental disorders based on the type of child disorder and the gender of the parents (p > 0.05). The results also showed that there was no significant difference in the subscale of emotional/informational support, tangible support, and affectionate support between parents of children with neurodevelopmental disorders (p > 0.05) but in the one subscale (i.e. social interaction) parents of children with intellectual disability was significantly higher than parents of children with autism spectrum disorder and parents of children with attention deficit hyperactivity disorder. Moreover, The results showed that there was no significant difference in subscales of social support between parents of children with neurodevelopmental disorders based on the gender of the parents (p > 0.05). Therefore, according to the research findings, the design and implementation of support and educational programs for parents of children with neurodevelopmental disorders, especially in parents of children with ASD and ADHD, and to increase social interactions are essential and should be a priority in the programs of organizations providing psychological services. [ABSTRACT FROM AUTHOR]

Background: Parenting a child with Autism Spectrum Disorder (ASD) may lead to emotional distress. However, it has been recognized that it can also be accompanied with positive experiences that may conduce parents to posttraumatic growth (PTG). Few studies have investigated the factors that may be associated with growth. The present study aimed to assess the role of maternal perceptions, coping strategies and depressive symptoms to PTG. Method: In this cross-sectional study, 123 mothers of ASD offspring completed self-reported questionnaires to assess posttraumatic growth (PTGI); coping strategies (Βrief-COPE); perceptions about ASD (B-IPQ) and depressive symptoms (PHQ-9). Hierarchical regression analysis was used to assess their independent associations. Results: A significant proportion of mothers (56.1%) reported moderate to high growth levels (PTGI ≥ 63). Nearly half of the mothers (46.3%) reported clinically significant depressive symptoms. Engagement (b = 0.361), cognitive reframing (b = 0.214), personal control (b = 0.200) and depressive symptoms (b = −0.232) were independently and significantly associated with PTG. Conclusions: Mothers of children with ASD may experience moderate to high PTG. Engagement, cognitive reframing, personal control and depressive symptoms were significant predictors of growth level. Interventions aiming to support mothers to potentiate their personal control over ASD, to use adaptive coping strategies and to reduce distress may facilitate their growth. [ABSTRACT FROM AUTHOR]

Although research has shown that parenting an adolescent with a visual impairment may present unique challenges, a few studies have examined how parents negotiate such challenges and the meanings they derive from their parenting experiences. Using a constructivist narrative inquiry approach, this study explored how four parents of adolescents with visual impairments storied their psychosocial and occupational experiences of childrearing. A holistic-content analysis and thematic analysis of participants' narrative accounts was conducted, resulting in the identification of the following five themes: (1) Grief, Uncertainty, and Frustration During the Early Years ; (2) Identity as An Advocate ; (3) Enabling Independence and Planning for the Future ; (4) Navigating Challenges in Getting Required Support: Frustrations and Successes ; and (5) Changed Perceptions Within the Context of Societal Misunderstanding. Findings of this study address a gap in the current body of literature by highlighting the complexity of parents' experiences along the journey of raising an adolescent with a visual impairment. These complexities are important to address in low vision rehabilitation practice to best support parents and youth, and further research is required to inform such practice. [ABSTRACT FROM AUTHOR]

Parents are an essential element of family intervention for all children, including those with autism spectrum disorders (ASDs). We can better understand and address parents' knowledge gaps about ASD through in-depth research and inquiry into parents' current level of understanding, attitude, and perception. We aimed to assess the knowledge, attitude, and perception of ASD and influencing factors towards ASD among a group of parents with and without a child diagnosed with ASD in Sakaka, Al-Jouf Region, Saudi Arabia. Using the cross-sectional study design, information from the parents was gathered using a pretested questionnaire that included validated scales for measuring knowledge, attitudes, and perceptions related to ASD. The required number of participants was selected using the convenience sampling method. We used Spearman's correlation test to determine the strength and direction of correlation between each domain. As a last step, we analyzed the influencing factors using binomial logistic regression. Among the 400 participants, 41.2% had high knowledge, 69.1% had a positive attitude, and 60.3% had a high perception of ASD. We found that knowledge was significantly higher among the parents with autistic individuals in the family (p = 038). The high and positive attitude was significantly greater among females (p = 0.010) and parents with high income (p = 0.007), and the perception was significantly associated with females (p = 0.037) and highly educated participants (p = 0.046). Furthermore, we found a positive correlation between knowledge, attitude, and perception. Overall, only less than half of the participants had a high knowledge of ASD. Hence, we recommend awareness-raising programs for the parents in this region. Furthermore, a prospective study involving parents from all provinces of Saudi Arabia is recommended. [ABSTRACT FROM AUTHOR]

Background: PTEN is primarily known as a tumour suppressor gene. However, research describes higher rates of difficulties including intellectual disability and difficulties relating to autism spectrum conditions (ASCs) in people with germline PTEN mutations. Other psychological characteristics/experiences are less often reported and are explored in this study. Methods: The parents of 20 children with PTEN mutations completed an online survey exploring adaptive behaviour, ASC‐associated behaviours, anxiety, mood, hypermobility, behaviours that challenge, sensory experiences, quality of life and parental wellbeing. Published normative data and data from groups of individuals with other genetic neurodevelopmental conditions were used to contextualise findings. Results: Overall levels of adaptive behaviour were below the 'typical' range, and no marked relative differences were noted between domains. Higher levels of ASC‐related difficulties, including sensory experiences, were found in comparison with 'typically developing' children, with a possible peak in restrictive/repetitive behaviour; ASC and sensory processing atypicality also strongly correlated with reported joint hypermobility. A relative preservation of social motivation was noted. Anxiety levels were found to be elevated overall (and to relate to sensory processing and joint hypermobility), with the exception of social anxiety, which was comparable with normative data. Self‐injurious behaviour was common. Conclusions: Results suggest a wide range of possible difficulties in children with PTEN mutations, including elevated anxiety. Despite elevated ASC phenomenology, social motivation may remain relatively strong. Firm conclusions are restricted by a small sample size and potential recruitment bias, and future research is required to further explore the relationships between such characteristics. [ABSTRACT FROM AUTHOR]

The social capital experiences of 10 Australian adolescents aged between 13-16 years, who identified as d/Deaf, were explored in semi-structured interviews. Additionally, one parent of each adolescent was interviewed about the adolescents' experiences as a way of augmenting the adolescents' responses. This study used a social capital framework to explore various aspects of the adolescents' lives and ascertained factors that facilitated or diminished the social capital reserves of the young participants through an interpretative phenomenological analysis approach. Four themes were identified: Social Capital Reserves; Social Capital Boosters; Social Capital Barriers; and Identity. Particular attention is drawn to how these adolescents perceived themselves and the role of the school in developing, or diminishing, social capital Ten d/Deaf Australian adolescents interviewed in this study generally felt supported and understood by family and close friends. The adolescents' social capital was influenced by how they engaged with their d/Deaf identity. Some adolescents reported diminished participation in networks outside the home that may indicate they do not feel included in all school and extra-curricular activities. Some parents reported that their children had experienced bullying and discrimination at school. Adolescents had mixed feelings about their d/Deaf identity, with some attempting to normalize their experiences. This may be indicative of people in their social networks not accepting an identity outside of the majority, typically-hearing population. [ABSTRACT FROM AUTHOR]

Mothers of autistic children encounter numerous daily challenges that can affect their adaptation. While many studies have documented the impact on mothers of having an autistic child and factors contributing to their adaptation and their experiences of motherhood, few have examined how mothers of autistic children perceive their overall adaptation. We investigated with a qualitative design how mothers of autistic children perceive stressors, facilitators (resources, coping strategies, and contexts), and outcomes of adaptation in various life domains. Participants included 17 mothers of autistic children ranging from 2 to 8 years old. Mothers participated in a phone interview about their perception of their successes, challenges, and adaptation as mothers of their children. A thematic analysis was conducted on interview transcripts using inductive and deductive coding. A cross-case analysis was subsequently used to identify themes and subthemes. Results highlight the complexity of the maternal adaptation process in the context of autism, which starts before the child's diagnosis. Stressors, facilitators, and outcomes were described as overlapping in the psychological, social, professional, marital, and parental life domains. The accumulation of stressors was identified as mothers of autistic children's main source of stress and almost impossible to reduce. Participants explained having difficulties accessing effective facilitators. While outcomes of adaptation vary across mothers and life domains, indicators of distress were identified for all participants. Implications are discussed regarding how service providers and society could better support mothers of autistic children by considering their complex reality and by providing more resources and information. Highlights: Mothers of young autistic children participated in semi-structured interviews about their adaptation process. The adaptation process starts before the child's diagnosis. Stressors, facilitators, and outcomes overlap between life domains. The accumulation of stressors is identified as the main source of mothers' stress and is almost impossible to reduce. Outcomes of adaptation vary across mothers and life domains, yet all mothers mention at least one indicator of distress. Service providers should focus on offering more resources to mothers to promote better access to effective facilitators. [ABSTRACT FROM AUTHOR]

Background: Previous research has emphasized the significant role of illness perception in chronic diseases, including Multiple Sclerosis. Limited research has been conducted on exploring illness perception in Pediatric Onset Multiple Sclerosis (POMS), parental illness perception, and the impact of differences in their illness perceptions on the emotional well-being of the child. Method: This study included 65 dyads of children aged 10–17 and their parents, divided into the following two groups: (I) 32 dyads of children with POMS and their parents; and (II) 33 dyads of healthy children and their parents. Results: Overall, 73.1% and 43.8% of the children with POMS met the criteria for probable anxiety and depression, respectively, compared to 27.3% and 0% of the healthy children. Differences were found between the dimensions of illness perception in the POMS children and their parents, in the areas of consequences, personal control, identity, and control factors. Multinomial Logistic Regression indicated that differences in child–parent illness perception increased the likelihood of comorbid anxiety and depression by 37%. Discussion: These findings underscore the importance of alignment between children with POMS and their parents in illness perception. Healthcare providers should prioritize interventions that address illness perceptions and be mindful of the potential impact on depression and anxiety comorbidity. [ABSTRACT FROM AUTHOR]

AbstractPurposeMethodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONTo explore the impact of the online ENVISAGE program for parents of children with neurodevelopmental disabilities (NDD) on parents’ perception of themself, their child with a disability, and their family, as well as to explore experiences of participating in the program in Croatia.In this before-after discourse analysis study, participants took part in the five-week ENVISAGE program. There were two semi-structured interviews for each participant: within one month before and after participating in the program. The proportions of positive, neutral, and negative sentences about themself, their child, and their family from two interviews were compared on an individual and group level. The perceived changes and experiences with the program were also analyzed qualitatively.Data from thirteen participants were included. From the three pre-determined discourse categories (self, child, and family), most changes were observed in parents’ perception of self (average increase in positive views of 8.8% and decrease in negative of 5.3%). Qualitative results showed multiple positive self-perceived impacts on parents’ lives. Participants’ experiences with ENVISAGE were consistently positive; all believed they benefited from the program.The results support our assumption that participation in ENVISAGE positively affects multiple areas of life, particularly parents’ views of themself.ENVISAGE is an online, 5-week empowerment program for parents of children with neurodevelopmental disabilities that was tested for the first time in Croatia in this study.Results show that ENVISAGE mostly led to the improvements in the perception of self and their child with a disability.For all parents, ENVISAGE was a positive experience and a program they would recommend to other parents.ENVISAGE is an online, 5-week empowerment program for parents of children with neurodevelopmental disabilities that was tested for the first time in Croatia in this study.Results show that ENVISAGE mostly led to the improvements in the perception of self and their child with a disability.For all parents, ENVISAGE was a positive experience and a program they would recommend to other parents. [ABSTRACT FROM AUTHOR]

Background: Caring for a child with developmental disabilities (DD) is associated with significant stress and burden. Caregivers' experiences are influenced by factors such as poverty, stigma, and the lack of accessibility to services, equipment, and assistive devices. These factors are prevalent in a low-resource setting like Ghana which ultimately influences the experiences of caregivers. The aim of the study was to explore the experiences of caregivers of children with DD in the context of the Stress Process Model. Methods: The study employed a descriptive phenomenological design Caregivers of children with DD attending the Neurodevelopmental Clinic of a Teaching Hospital were purposively sampled. Data collection involved semi-structured interviews, reaching saturation with 14 participants. The interviews were audio-recorded transcribed verbatim and analysed using thematic analysis. Results: Four main themes emerged: perception of caregiving, stressors faced by caregivers, negative health outcomes and coping strategies. Perception of caregiving had two sub-themes as stressful nature of caregiving and time-consuming. Six sub-themes were linked to stressors faced by caregivers: the child's ADL needs, communication barrier, managing challenging behaviour, child's health needs, unmet educational needs, and economic burden. Negative health outcomes had three sub-themes: decline in physical, mental and social well-being. While some caregivers used maladaptive coping strategies like blaming, others employed adaptive coping strategies like religious coping through prayer, self-encouragement and support from other family members. Conclusion: The study highlights the complex interaction between caregivers' perception of their caregiving situation, the stressors they experience, their coping resources, and the negative health outcomes associated with caregiving. These findings underscore the need for context-specific caregiver programmes to mitigate the negative impacts of caregiving. [ABSTRACT FROM AUTHOR]

Research has indicated the effectiveness of Dialectical behavior therapy in adolescents (DBT-A) with severe emotion dysregulation and other symptoms of Borderline Personality Disorder (BPD). The objective was to determine if DBT skills group with caregivers only could influence in potential mediators of DBT outcomes including rearing styles, emotion regulation and mindfulness skills, evaluated in both parents and adolescents. We implemented a 12-week group intervention based on DBT-A addressed to seven parents of adolescents with features of BPD. We tested differences after treatment using the non-parametric Wilcoxon test and calculated effect sizes. To understand individual changes, we reported clinical reliable change (CRC). The intervention was effective for improving rearing styles, emotion regulation and mindfulness skills in adolescents. Changes were stable after 6 months. The intervention showed good levels of satisfaction reported by parents. A short DBT group-only intervention with caregivers could modify relevant processes related with features of BPD in adolescents. Early interventions with adolescents with symptoms of BPD could prevent the development of BPD influencing in potential mediation mechanisms. [ABSTRACT FROM AUTHOR]

Concerns have been raised about genomic studies of autism. Most recently, the Spectrum 10 K study was paused due to criticism from the autistic community. This situation raised important questions about how the autistic and autism communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based-research study was established to address this issue. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, if it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world. Participants felt that they and their children were often excluded from, and unrepresented by, the autistic and autism communities. We conclude that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard. In Summer 2021, a genomic study of autism, Spectrum 10 K, was paused due to backlash from the autistic and autism communities. This raised important questions about how these communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based research study was established to address this issue among a range of sub-groups within these communities. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience and involved a parent of a minimally verbal autistic child. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, as long as it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world and that the world is too far from ideal. Participants felt excluded from the autistic and autism communities and that the dominant voices in those communities do not represent them or their children. We concluded that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard. [ABSTRACT FROM AUTHOR]

Mothers of autistic children often report poor mental health outcomes. One established risk factor for these outcomes is the child having a medical home. This study examined possible mediating variables (coping, social support) in this relationship in 988 mothers of autistic children from the 2017/2018 National Survey of Children's Health (NSCH). The results of the multiple mediation model suggest the relationship between having a medical home and maternal mental health is largely explained by indirect associations with coping and social support. These findings suggest that clinical interventions for coping and social support provided by the medical home for mothers of autistic children may improve maternal mental health outcomes over and above implementation of a medical home. [ABSTRACT FROM AUTHOR]

Physical activity (PA) benefits children with autism spectrum disorder (ASD). Evidence suggests that some barriers impede parents from providing PA support for their children with ASD. Parental perceived stigma is one of these barriers. However, few studies have explored how parental perceived stigma influences parental PA support. This study aimed to investigate the relationship between parental perceived stigma and parental PA support, the mediating role of parental self-efficacy, and the moderating effect of having other typically developing children or not. A total of 274 participants were recruited to participate in the study. The results showed that parental self-efficacy mediated the association between parental perceived stigma and parental PA support and the moderating effect of having other typically developing children or not. [ABSTRACT FROM AUTHOR]

Research suggests that challenges associated with raising a child with an Autism Spectrum Disorder (ASD) can increase parents' risk for diminished parenting self-efficacy (PSE) and psychological wellbeing. The present study aimed to explore interrelationships between noteworthy predictors of PSE and parental psychological distress, including parental mastery beliefs and the co-parenting relationship amongst 122 Australian parents of children with autism. Results indicated that greater mastery beliefs and more favourable co-parenting relationships predicted greater PSE, and higher PSE predicted less psychological distress. PSE significantly mediated relationships between mastery beliefs and psychological distress, and between the co-parenting relationship and psychological distress. Findings have implications that can aid professionals to more effectively support parents raising children on the autism spectrum. [ABSTRACT FROM AUTHOR]

The purpose of this study was to determine if parents receiving emotional support is positively correlated with children's participation in physical and social activities and if such a correlation exists between parental emotional support in children labeled as autistic. Data were drawn from 30,501 children aged 6 to 17 years in the 2020 National Survey of Children's Health database and analyzed using a retrospective cross-sectional approach based on multivariate linear regression models. Results showed parental emotional support was statistically significantly correlated with children's physical and social activity in the total sample but was not significant for the emotional support of parents with autistic children. The findings suggest that other issues must be considered as contributing factors for parents of autistic children in relation to social and physical activity participation. [ABSTRACT FROM AUTHOR]

Background: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. Methods: Two rounds of semi‐structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open‐ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data‐driven inductive thematic analysis. Results: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. Conclusions: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP. [ABSTRACT FROM AUTHOR]

Aim: This study's aim is to determine the relationship between care burden, perceived social support, coping attitudes and life satisfaction of mothers with children with cerebral palsy (CP). Methods: This descriptive study was conducted in Turkey between March and June 2022 to determine the relationship between caregiving burden, perceived social support, coping attitudes and life satisfaction of 122 mothers with CP children. Path analysis was used to evaluate the data. Results: Correlation analysis showed a positive relationship between mothers' social support perceptions and life satisfaction and coping attitudes, a positive relationship between their life satisfaction and coping attitudes (p <.001). The path analysis showed that the social support perceived by the mothers significantly affected their coping attitudes (β =.257; p <.001) and life satisfaction (β =.081; p <.001). Mothers' care burden (β =.169; p <.001) and coping attitudes (β =.071; p <.05) also had a significant effect on their life satisfaction. Conclusions: It is an important finding of this study that mothers' perceptions of social support and coping attitudes have a positive effect on their life satisfaction. Long‐term care can cause physical and psychological problems for mothers. Mothers' strong coping strategies and high levels of social support may reduce the occurrence of these problems. Drawing attention to this issue in mothers and revealing the effects of these variables is important in terms of indirectly supporting child outcomes. [ABSTRACT FROM AUTHOR]

Background: Researchers have made great efforts to help parents of children with intellectual disabilities overcome the stress and burden. Learning to be resilient is one effective strategy. Aim: This study explores resilience among parents of children with intellectual disabilities and how career burnout and self‐regulation relate to parents' resilience in mainland China. Methods: The Burnout Scale, the Self‐Regulation Scale and the Resilience Scale were administered to 324 parents of children with intellectual disabilities. Results: Results showed that career burnout significantly negatively influenced resilience (β = −0.269, p = 0.000), while self‐regulation significantly positively influenced resilience (β = 0.754, p = 0.000). In addition, self‐regulation moderated the relationships between career burnout and resilience (β = 0.176, p = 0.003). Conclusion: The findings offer valuable insights for enhancing the resilience of parents of children with intellectual disabilities. [ABSTRACT FROM AUTHOR]

This study addresses the underexplored topic of parenthood for children with disabilities within the Druze community in Israel. While existing research predominantly focuses on Western cultures, this qualitative investigation involves 21 Israeli Druze parents across different age groups. Thematic analysis of in-depth interviews revealed three key themes: Challenges and strengths, Parents' faith-based narratives, and The empowering role of religious faith. Notably, age-related distinctions emerged in experiences of loneliness and social support. The implications for social work practice and policy, and future research are discussed, emphasizing the significance of considering cultural and faith-based dynamics in supporting parents of children with disabilities. [ABSTRACT FROM AUTHOR]

Background: Individuals with autism spectrum disorder (ASD) have social communication difficulties and restricted, repetitive, and/or sensory behaviors or interests. The prevalence of ASD is now 1 in 36 individuals. Parents of individuals with ASD face challenges that can affect their physical and psychological well-being. Objective: With the long-term goal to tailor an exercise program, the purpose of this study was 2-fold: (1) establish the baseline physical and mental health of parents of individuals with ASD and (2) estimate the relationship of physiologic variables with psychological variables of health for parents of individuals with ASD. Methods: This descriptive, cross-sectional study (N = 44) explored physical health measures and the correlation between physical and psychological health, using measures of anxiety, stress, parenting depression, and positive thinking for parents who care for individuals with ASD. Results: The common characteristics that these parents shared was high body fat and low physical activity. Body fat was negatively correlated to total step count (r = −0.428, P <.05), grip strength (r = −0.319, P <.5), and total distance walked in the week (r = −0.661, P <.01), and positively correlated to 5-times sit to stand (r = 0.337, P <.05). Low activity correlated to increased parenting stress of advocating for child's needs (r = −0.310, P =.043). Conclusions: Understanding relationships between physical and psychological health informs effective interventions and support systems for parents. Parents need supports to be able to prioritize exercise. Future studies should include a larger sample to verify these effects. [ABSTRACT FROM AUTHOR]

Parenting a child with profound intellectual and multiple disabilities has expanded practical and existential implications. This study contributes to understanding parents' lifeworld and their vulnerabilities by examining the deeper layers of what parents express through their use of images and metaphors. In-depth interviews with 25 Dutch parents were analysed by conducting systematic metaphor analysis informed by metaphor theory. We used the concept of social imaginary to reflect on the sociocultural or collective dimension of parents' discourse. The following central metaphorical concepts were identified: Stagnation; Labyrinth; Battle; Transition; Medal; and Parallel worlds. Identified images and metaphors revealed an interplay of imaginaries regarding health and normality, autonomy and responsibility and what lives are worth living. Imaginaries may be transformed to frames that are more inclusive to families with children with disabilities. The study supports the demand to create humane care systems that address families' vulnerabilities. This study explored the metaphors and images used by parents caring for children with profound intellectual and multiple disabilities when telling about their experiences. This was done to better understand what people convey through the words they use. The identified images and metaphors indicated that parents are affected by societal views about what is healthy and normal, about autonomy and responsibility, and of what makes lives worth living. Awareness of how societal views are embedded in healthcare policies and practices can change the day-to-day experiences of parents. More diverse views about how people and families can be may contribute to the inclusion of families in society and better access to the resources needed to manage family life. The findings accentuated that autonomy and responsibility have many relational aspects. Healthcare services should acknowledge this and enable parents to combine optimal care for the child with the achievement of other ambitions in life. [ABSTRACT FROM AUTHOR]

Psychotherapeutic interventions such as cognitive training and psychoeducation tend to be effective for alleviating stress in caregivers of children with autism. However, these interventions are often time consuming and take place outside the home, posing challenges for accessibility. Technology, especially virtual reality (VR) technology, can be used to support a range of digital interventions at home. VR headsets, when used to simulate relaxing experiences, have already been linked with stress relieving effects for some caregiving groups. This study builds on this, exploring whether VR simulated relaxing environments engender positive psychological changes for caregivers of children with autism. A total of 18 caregivers were exposed to VR simulated natural environments (e.g., beach, forest) for 15 min in a single session. State mood, captured with POMS, was measured at baseline and immediately post intervention. Perceived stress (PSS) was captured at baseline and, to explore intervention effectiveness, at three- and seven-days post intervention. POMS scores for tension, anger, depression, fatigue and confusion were lower, and scores for vigour higher, immediately post intervention. PSS scores at three-and seven-days post intervention, while comparable with one another, were lower compared with baseline. Interacting with simulated natural environments in VR seems effective for improving caregivers' state mood and reducing their perceived stress for up to seven days. Future research should aim to consolidate and expand on these findings with larger samples and longer follow up periods. Highlights: We examined whether virtual reality simulated nature experiences reduce stress in caregivers of children with autism. Positive mood was higher, and negative mood lower, following the intervention. Perceived stress was lower three-and seven-days post intervention. Interacting with relaxing natural spaces in VR promotes positive psychological changes for caregivers of children with autism. [ABSTRACT FROM AUTHOR]

Objective: Child-oriented psychotherapies, such as Attention Process Training (APT), target ADHD symptoms directly, whereas family-oriented interventions, like Parent Management Training (PMT), address its functional impairments. The aim of this study was to compare the effectiveness of APT and PMT in treating ADHD symptoms. Method: This research was a randomized controlled trial in which 45 children (26 females and 19 males, with a mean age of 8.47 ± 1.66 years) with ADHD were selected conveniently and assigned randomly to one of three groups (PMT = 15, APT = 15, and CTRL = 15). The groups had no significant differences in ADHD severity. The PMT children were managed with parenting techniques. Children in the APT group practiced attention techniques, while children in the control group did not receive any intervention. Ritalin was prescribed to all the children in the three groups. The score on the Conners Parenting Rating Scale-Revised: Short form was the outcome variable. Results: Both interventions decreased ADHD symptoms severity more than the control group. Howver, the reduction in the APT group was more than in the PMT group (P-value < 0.001). The scores of 40% of the APT group and 80% of the PMT group did not fall below the cut-off point. In the APT group after the intervention, the inattention subscale was significantly lower than the hyperactivity subscale, while in the PMT group, the hyperactivity subscale was lower. The effect sizes of APT and PMT were 2.18 and 2.09, respectively. Conclusion: For ADHD, psychological interventions are crucial in addition to medication. According to the results of this study, APT is more effective for inattention symptoms, while PMT is more effective for hyperactivity symptoms. When selecting psychotherapy, the subtype of ADHD should be taken into account. Treatment sessions must also be completed according to intervention protocols. [ABSTRACT FROM AUTHOR]

Objectives Understanding the parenting practices of parents of children with epilepsy can be a practical guide for care and education planners to prevent mental disorders in these children. This study aimed to explain the parenting practices of parents of children with epilepsy in Shahrekord. Materials & Methods This study is a qualitative study with conventional content analysis. Participants in the study consisted of 20 mothers with epileptic children in Shahrekord, who were included in the study by purposive sampling method with maximum variance in terms of child age, number of family children, and child sex. The data collection method was a semi-structured interview using the interview guide. Data analysis was performed using a conventional content analysis at the same time as data collection. Interviews continued until data saturation was reached. Results The present study revealed five main themes in discipline methods, including over-support / over-protection, forcing to support, rejecting, parental conflict in discipline methods, and using harmful discipline methods. Conclusion In conclusion, the experiences of mothers in the present study show that using inappropriate discipline methods can have adverse effects on the mental-emotional and social health of the child in the future and raise the need to design educational interventions to empower parents of epileptic children in coping with parenting stress effectively. [ABSTRACT FROM AUTHOR]

The current study aimed to investigate the psychological impact of the Turkey 2023 earthquakes on children with autism spectrum disorder (ASD) and their parents residing in Hatay, Sanlıurfa, and Ankara provinces, encompassing the periods both before and after the Turkey 2023 earthquakes. This cross-sectional, multicenter study included 103 children and adolescents with ASD aged between 6 and 18. Participants were evaluated based on their residence in Ankara, Hatay, and Sanlıurfa, three cities affected differently by the earthquake. Parent-report questionnaires were utilized to assess the children's autism symptoms and behavioural problems. The Childhood Autism Rating Scale was used to determine autism severity. The psychiatric problems of mothers were also assessed with self-report scales. Significantly increased levels of core autism symptoms, irritability, and hyperactivity were found in Hatay and Sanlıurfa participants after the earthquakes compared to before, while no differences were detected in children from the Ankara group. Scale score increases in the Hatay group, which had to take a more extended break from special education, were higher than in the Sanlıurfa group. Participants with late-diagnosed ASD exhibited a more significant increase in their scale scores after the earthquake. Depression, stress and hopelessness scores were the highest, and the life satisfaction levels were the lowest in mothers of the Hatay and Sanlıurfa groups. More pronounced increases were observed in aberrant behaviours among children of mothers with low educational levels following the earthquake. Our findings demonstrate that the exacerbation of core ASD symptoms and behavioural deterioration after the earthquakes are associated with disruptions in specialized education services, exposure to earthquake-related trauma, and the educational level of mothers. [ABSTRACT FROM AUTHOR]

Objectives: Few evidence-based psychosocial programs exist within craniofacial care. This study (a) assessed feasibility and acceptability of the Promoting Resilience in Stress Management-Parent (PRISM-P) intervention among caregivers of children with craniofacial conditions and (b) described barriers and facilitators of caregiver resilience to inform program adaptation. Design: In this single-arm cohort study, participants completed a baseline demographic questionnaire, the PRISM-P program, and an exit interview. Participants: Eligible individuals were English-speaking legal guardians of a child <12-years-old with a craniofacial condition. Intervention: PRISM-P included 4 modules (stress-management, goal-setting, cognitive-restructuring, meaning-making) delivered in 2 one-on-one phone or videoconference sessions 1–2 weeks apart. Main Outcome Measures: Feasibility was defined as >70% program completion among enrolled participants; acceptability was defined as >70% willingness to recommend PRISM-P. Intervention feedback and caregiver-perceived barriers and facilitators of resilience were summarized qualitatively. Results: Twenty caregivers were approached and 12 (60%) enrolled. The majority were mothers (67%) of a child <1-year-old diagnosed with a cleft lip and/or palate (83%) or craniofacial microsomia (17%). Of these, 8 (67%) completed PRISM-P and 7 (58%) completed interviews; 4 (33%) were lost-to-follow-up before PRISM-P and 1 (8%) before the interview. Feedback was highly positive, with 100% willing to recommend PRISM-P. Perceived barriers to resilience included uncertainty about their child's health; facilitators included social support, parental identity, knowledge, and control. Conclusions: PRISM-P was acceptable among caregivers of children with craniofacial conditions but not feasible based on program completion rates. Barriers and facilitators of resilience support the appropriateness of PRISM-P for this population and inform adaptation. [ABSTRACT FROM AUTHOR]

In this article the authors report an interview between Dean Bragonier, Executive Dyslexic of NoticeAbility, USA and Angela Fawcett, international researcher into dyslexia, and explore the research literature on strengths and weaknesses in dyslexia. The interview was motivated by a series of conversations between the authors, and proposed by Fawcett in order to explore the underlying motivation and rationale for the work of the NoticeAbility group in designing and delivering entrepreneurial curricula for middle school children with dyslexia, in order to highlight their strengths in this area. Inspired by the highly successful keynote presentation by Bragonier at Unite SpLD, 2021, incorporating his research, the article attempts to provide a vehicle to escape any perceived ongoing constraints of dyslexia on academic self-expression from Bragonier, showcasing his motivation and the success of the approach he has been able to adopt in improving the motivation and self-esteem of dyslexic children, and the impact of these programmes on their parents and teachers. His approach is illustrated by the work of his son Bodhi in the recent Magellan Campaign visit to the UK, analysing the impact of positive role models in dyslexia. The article concludes with a review of the Positive dyslexia movement and its impact on dyslexia support. [ABSTRACT FROM AUTHOR]

Objectives: This qualitative study aims to examine parental experiences of feasibility and relational changes from participating in the Paediatric Autism Communication Therapy (PACT) intervention. Methods: Thirteen parents of children diagnosed with autism spectrum disorder (mean age 3.89 years) participated in semi-structured interviews. Thematic analysis was performed, inspired by an abductive approach informed by the theories of the attachment system, the caregiving system and mentalisation. Results: Three overarching themes were identified: the struggle of fitting PACT into everyday life, the fruit of relational connection and the cascading relational effects of PACT. Parents were challenged regarding finding time for the intervention but adapted PACT to their individual needs and possibilities. All parents experienced relational improvement, and a cycle of positive relational change through PACT was identified. Conclusions: This study has several clinical implications. Therapists and clinics offering PACT interventions should encourage and support parents in their individual journey of implementing PACT into their everyday lives. Some of the parents described improvements in parental mentalisation, child attachment and mutual enjoyment in the parent–child relationship. Children with autism could benefit from parents increasing their sensitivity when caregiving, and clinicians may through interventions such as PACT facilitate this development. [ABSTRACT FROM AUTHOR]

The rising prevalence of CSHCN has led to significant challenges for caregivers, particularly mothers, who face difficulties from caregiving demands and managing complex healthcare interactions. The objective of this study was to examine the association between the medical complexity of CSHCN and the healthcare experiences of their mothers while exploring the influence of sociodemographic factors on these associations. The study utilized data from the 2016–2020 National Survey of Children's Health (NSCH), involving 17,434 mothers of CSHCN. Mothers provided information on the medical complexity of CSHCN, healthcare experiences (care coordination, family-centered care, and shared decision-making), and sociodemographic information (race, community, insurance, child sex, age, and federal poverty level). Results from multiple regressions revealed that greater medical complexity was associated with more negative healthcare experiences. Minoritized mothers, those in rural areas, and families with lower income reported lower levels of family-centered care, indicating significant disparities. Additionally, the negative association between medical complexity and healthcare experiences was pronounced for White families and those with private insurance compared to minoritized families and those with public insurance. This study highlights the necessity for targeted interventions to improve care coordination, family-centered care, and shared decision-making, emphasizing the need for a comprehensive, family-centered approach to address healthcare disparities and promote health equity for CSHCN and their families. [ABSTRACT FROM AUTHOR]

Background: Attention Deficit Hyperactivity Disorder (ADHD) is a chronic neurodevelopmental disorder that, in addition to its impact on children, may lead their parents to experience various psychological disorders, particularly Parenting Stress (PS). The prevalence and severity of PS may be correlated with various factors, particularly parents' level of Health Literacy (HL). Objectives: Given the scarcity of studies in the field of children with ADHD and their controversial results, alongside the significance of ADHD-related PS among their parents, the aim of the current study was to determine the levels of PS, HL, and the PS-HL correlation among parents of children with ADHD. Methods: In this cross-sectional and descriptive-correlational study, a total of 70 parents of children with ADHD participated based on inclusion criteria and convenience sampling. Their PS and HL were investigated using the "Socio-Demographic Information Questionnaire (SDIQ)," "Parenting Stress Index, Fourth Edition (PSI-4)," and "Test of Functional Health Literacy in Adults (TOFHLA)." The gathered data were analyzed using SPSS version 26. Results: The disparity in the sociodemographic characteristics of the participants was considerable. The PS among parents of children with ADHD ranged from "moderate to high" (x̄ = 287.51 ± 107.68, P < 0.05), and their HL ranged from "borderline to sufficient" (x̄ = 73.76 ± 14.02, P < 0.05). Additionally, there was a significant (P = 0.02) but not very strong inverse correlation (- 0.268) between PS and HL among these parents. The correlations obtained between "demographic characteristics with PS and HL" were varied. Conclusions: Based on the results, Iranian parents of children with ADHD demonstrated a "relatively sufficient" level of HL and a "considerable" level of PS. There was a significant, yet not very strong inverse correlation observed between PS and HL among the participants. However, it is important to acknowledge that the obtained frequency, severity, and correlation of these variables were influenced by various demographic inequalities among the participants. [ABSTRACT FROM AUTHOR]

Physical activity (PA) can provide multiple benefits for children with visual impairments (VI). To date, little research has explored the retention effects of PA interventions for children with VI. Thus, the purpose of this study was to explore the PA experiences of parents of children with VI three months after completing a PA intervention. This descriptive-qualitative study was situated in the Theory of Planned Behavior. Five parents completed semi-structured interviews that were transcribed and analyzed using a thematic line-by-line analysis. Four themes characterizing how parents created PA opportunities for their children with VI were constructed: (a) Teaching from Awareness (b) Advocating for Needs, (c) Engaging Family through Community, and (d) Seeking More PA Opportunities. Parent's awareness of their child's abilities, parents' advocacy, and parents' teaching skills all helped to expose their children to new types of PA in the community. Parents reflected about a lack of consistently offered community-based PA for their children. Researchers must consider the importance of educating parents on how to teach skills, increase awareness, and advocate for more community-based PA programs. Three months after a physical activity intervention for children with visual impairments, parents' awareness of their child's abilities, advocacy, and competence teaching motor skills helped to expose their children to new types of physical activities in the community and at home. The lack of consistently offered community-based physical activities for children with visual impairments calls for rehabilitation professionals to create or promote existing physical activity programs for children with visual impairments. Rehabilitation professionals should explore how physical activity programs can address barriers faced by participants (e.g., lack of knowledge, lack of physical activity equipment), and offer a continuum of activities and programming for these families in the home and community setting. Rehabilitation professionals should educate parents on the importance of physical activity, how to teach motor skills, and advocate for more community-based physical activity programs for their children with visual impairments. [ABSTRACT FROM AUTHOR]

To describe the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) staff experiences, perceptions, and training needs surrounding the provision of infant feeding support for parents with intellectual and developmental disabilities (IDD). We conducted in-depth semistructured interviews between October and November 2021 with Maryland WIC staff (N = 10) who provide infant feeding counseling and support. We analyzed interviews using conventional content analysis. Three themes were identified: identifying and documenting IDD, facilitating effective communication and infant feeding education, and assessing WIC staff competence and readiness. The interviews suggested the need to explore the risks and benefits of routine and compassionate processes for identifying and documenting disability, create accessible teaching materials that facilitate understanding and engagement, and educate and train staff to provide tailored support in WIC. Engaging parents with IDD to better understand their perspectives and experiences should guide future efforts to improve inclusivity and accessibility. [ABSTRACT FROM AUTHOR]

Guided by Brashers's uncertainty management theory, the purpose of this study was to better understand the experience of family caregivers utilizing Medicaid waivers to subsidize health care for children with disabilities. Specifically, the focus of this study was to explore caregivers' experience with Kentucky's Michelle P. Waiver (MPW), a Medicaid waiver that provides robust benefit offerings to children with disabilities. Little is known about how parents come to know about the waiver, and the communication challenges they experience when applying for and navigating their child's health care through Medicaid. Data were gathered by narratively interviewing 31 parents of children who are currently receiving services through the MPW. Data were analyzed using narrative thematic analysis. The analysis focused on the community-level communication that contributes to parent caregivers' uncertainty about the MPW system. Findings show that parents experience unique personal, social, and medical uncertainties related to the MPW when navigating care for their child in the community. This project contributes to the health communication literature theoretically by expanding the conceptualization of the uncertainty in illness framework to include the means of health care (i.e. Medicaid) as a consequential element of an individual's illness experience. [ABSTRACT FROM AUTHOR]

This study aimed to investigate the association of religious belief on the postoperative psychological status and quality of life of parents of children with congenital heart disease (CHD). This was a cross-sectional study conducted at a provincial children's hospital in Fujian Province, China. Parents of postoperative children with CHD in the early postoperative period were included in this study between January 2020 and September 2020. The parents were divided into a religious belief group (n = 39) and a nonreligious belief group (n = 42) depending on whether they had religious beliefs. The Religious Coping Questionnaire, WHOQOL-BREF scale, Self-rating depression scale (SDS), and Self-rating anxiety scale (SAS) were used to evaluate psychological status and quality of life. The results showed that the SDS and SAS scores in the religious belief group were significantly lower than those in the nonreligious belief group (P = 0.012 and P = 0.003, respectively). The WHOQOL-BREF scale results showed that the religious belief group's score was significantly higher than those in the nonreligious belief group on the subscale scores of physiology, psychology, social relations, and environment on the WHOQOL-BREF. The total score of quality of life in the religious belief group was significantly higher than that in the nonreligious belief group. Religious belief was associated with lower SDS score (β = − 0.324, P = 0.005) and SAS score (β = − 0.245, P = 0.026), while religious belief was positively correlated with the score of WHOQOL-BREF (β = 0.506, P < 0.001). In this study, we concluded that comparing to those with no religious beliefs, parents with religious belief experienced more positive emotions and higher quality of life when taking care of children in the early postoperative period after congenital heart surgery. [ABSTRACT FROM AUTHOR]