Child Family Support Research Articles

Conceptualizing social support in families of children with special needs

Purpose: Families usually try to organize the family environment and reach out to resources that can meet their child's needs. Successful resource utilization is important for families in dealing with the daily challenges and demands of caring for a child with special needs. In particular, social support influences the successful adaptation of these families. The concept of social support is increasingly being used to understand families and their functioning, and this research contributes to the evolving process of adaptation. Method: This study used systematic literature review design. The article search was carried out from January- March 2022 for the literature on parenting styles for children with special needs. Result: The results mentioned that one or all of the family members experienced adjustments in their work, i.e. shortened working hours, quit their job, or quit their job. The various adjustments that must be made often lead to various disturbances and stress for parents. The stress experienced by parents is also related to the heavy responsibilities of caring for and raising children. Parents' reactions vary. There are parents who cope realistically, resisting, feeling sorry for themselves. When facing significant stressors, families will go through certain processes that allow them to survive and adapt until they can become a harmonious family. Conclusion: This social support can be emotional, assistance, or informational because it can have an effect on children with special needs so that they do not have to worry about their own weaknesses. Children with special needs that they do not feel different from normal children. This shows that one of the family functions is working very well.

Stepped-Care Web-Based Parent Support Following Congenital Heart Disease: Protocol for a Randomized Controlled Trial.

Early neurodevelopmental risks, compounded with traumatic medical experiences, contribute to emotional and behavioral challenges in as many as 1 in 2 children with congenital heart disease (CHD). Parents report a strong need for supports; yet, there remains a lack of accessible, evidence-based behavioral interventions available for children with CHD and their families. I-InTERACT-North is a web-based stepped-care mental health program designed to support family well-being and reduce behavioral concerns through positive parenting for children with early medical complexity. In previous pilot studies, the program was effective in increasing positive parenting skills and decreasing child behavior problems, with high parent-reported acceptability. This paper presents the protocol for the first randomized study of stepped-care parent support for families of children with CHD. This study will involve a single-site, 2-arm, single-blind randomized controlled trial to evaluate (1) the feasibility and acceptability of a web-based stepped-care parent support program (I-InTERACT-North) and (2) the effectiveness of the program in enhancing positive parenting skills and reducing behavioral concerns among families of children with CHD. Families will be randomized (1:1) to either receive treatment or continue with care as usual for 12 months. Randomization will be stratified by child's sex assigned at birth and baseline parent-reported child behavior intensity. Primary outcomes include positive parenting skills and child behavior at baseline, 3 months, 6 months, and 12 months. Secondary outcomes include parental mental health, quality of life, service usage, and feasibility including program reach and adherence. A sample size of 244 families will provide >95% power to detect an effect size of d=0.64. Based on attrition data from pilot studies, a target of 382 families will be enrolled. Parent reports of acceptability, adoption, and suggested adaptability of the program will be examined using cross-case thematic analyses. Primary efficacy analysis will be conducted using an intent-to-treat approach. Generalized estimating equations will be used to examine changes in positive parenting. Child behavior, quality of life, and parent mental health will be tested with repeated-measures analyses. Additional sensitivity and replication analyses will also be carried out. Recruitment began in February 2024, and recruitment and follow-up will continue until January 2029. We anticipate results in late 2029. This study aims to test the effectiveness of I-InTERACT-North web-based stepped-care parent support in improving positive parenting skills and reducing child behavior problems in families of children with CHD compared with a care as usual control group. Results will inform future clinical implementation and expansion of this program among families of children with early medical conditions. ClinicalTrials.gov NCT06075251; https://clinicaltrials.gov/study/NCT06075251. DERR1-10.2196/64216.

Neighbourhood deprivation and access to early intervention and support for families of children with intellectual and developmental disabilities

AbstractEnsuring families of children with intellectual and/or developmental disabilities (e.g., developmental delay, intellectual disability, autism) can access early intervention and support is important. Current research indicates there are family‐level socioeconomic disparities of access to early intervention and support, however, there is limited evidence on the relationship between neighbourhood‐level socioeconomic deprivation and access to support. Therefore, the aim of this study was to examine the relationship between neighbourhood deprivation and families' access to and unmet need for early intervention and support. We collected cross‐sectional data using a survey of 673 parental caregivers of young children with suspected or diagnosed intellectual and/or developmental disabilities in the UK. Multiple regression models were fitted for three early intervention and support outcome variables: access to early intervention; access to services across education, health, social care, and other sectors; and unmet need for services. Each regression model included a neighbourhood deprivation variable based on the index of multiple deprivation and five control variables: family‐level economic deprivation, country, caregivers' educational level, developmental disability diagnosis, and informal support sources. Neighbourhood deprivation was a significant independent predictor of access to services, but neighbourhood deprivation was not a significant predictor of access to early intervention or unmet need for services. Families living in the most deprived neighbourhoods accessed fewer services than other families. Socioeconomic disparities of access to early intervention and support, at both a neighbourhood and family level, exist for families of young children with suspected or diagnosed intellectual and/or developmental disabilities in the UK. Future research should focus on policy and other interventions aimed at addressing socioeconomic disparities at the neighbourhood and family level, to ensure equitable access to early intervention and support.

Children with Hirschsprung's Disease Report Dietary Effects on Gastrointestinal Complaints More Frequently than Controls.

Hirschspung's disease (HD) is a congenital gastrointestinal (GI) disorder frequently accompanied by GI complaints. Despite the lack of evidence regarding whether diet affects GI symptoms, advice on dietary changes is common. The aim was to investigate self-reported dietary effects on GI symptoms, comparing children with HD with healthy children. This was an observational, cross-sectional, self-reported case-control study using the validated Diet and Bowel Function questionnaire. All children with HD aged 1-18 years were surgically treated during 2003-2021 at a national HD center, and their parents were invited to participate. Healthy children served as controls. The data were presented as median (range) and n (%). 71/85 children with HD (6 years (1-17); 76% boys) and 265/300 controls (9 years (1-18); 52% boys) participated. Dietary effects on GI symptoms were reported more frequently by children with HD than controls (55/71 [77%] vs. 137/265 [52%], p ≤ 0.001), as were dietary adjustments to improve GI symptoms (49/71 [69%] vs. 84/265 [32%], p ≤ 0.001), and social limitations due to dietary adjustments (20/48 [42%] vs. 22/121 [18%], p = 0.002). Of 90 food items, children with HD reported that more of the items induced GI symptoms compared to controls (7 (0-66) vs. 2 (0-34), p = 0.001). Diet-induced GI symptoms and dietary adjustments' impact on daily life are reported more frequently by children with HD than controls. Moreover, the number and types of food items causing GI symptoms differ. The results indicate the need for disease-specific dietary advice to improve support for families of children with HD.

Causation in cerebral palsy: Parental beliefs and associated emotions.

To better understand parents' beliefs about causation in cerebral palsy (CP) and the emotions related to those beliefs. We surveyed 226 parents of children with CP aged 1 to 18 years, recruited from the Victorian Cerebral Palsy Register, to evaluate their beliefs about the causes of CP, including genetic causes, causes specific to their own child, and their attitudes and emotions in relation to these. Although 92% of participants reported that understanding the causes of their child's CP was important, uncertainty about the cause was expressed by 13%. The most frequently endorsed causal factors, in general and in their own child respectively, were intrapartum hypoxia (81%, 36%) or brain damage (69%, 22%), brain damage during pregnancy (73%, 28%), and preterm birth (66%, 28%). Genetic causes were deemed relevant by 13% of participants and hospital or professional error by 16%. Parents shared related feelings of anger (59%), sadness (80%), guilt (61%), and confusion (53%); parental anger was more likely when their child's CP was attributed to intrapartum events. Substantial parental interest in understanding the causes of CP, together with uncertainty about the causes, parents' causal attributions, and significant emotional sequelae, highlight a strong need for provision of information and support for families of children recently diagnosed with CP. Understanding the causes of their child's cerebral palsy (CP) was important to parents. Parents most often endorsed intrapartum factors as a cause of CP. Parents reported experiencing strong emotions about the causes of their child's CP.

Emotional and Behavioral Problems among Preschool Children

It is essential to recognize the rapid pace of growth and maturation from birth to age 5, which has multiple implications for assessment and treatment. For the primary types of problem behaviour discussed in this chapter (i.e., disruptive and emotional problems), identification and diagnosis based purely on child behaviour have been shown to have limited stability and prognostic implications until at least 24 months of age. Objectives To assess psychological issues (behaviour and psychological problems) among preschool children and To find out the relationship between psychological issues with child and parent personal characteristics (age, gender, father life, mother live, father job, mother job, level of education, residence area, and monthly income). Methodology A descriptive design cross-sectional study was carried out throughout the present study to identify psychological issues among preschool children, starting from 1st February 2018 to 1st May 2018 in Najaf city. A non-probability purposive sample of (269) children with psychological issues among preschool children, who were children of the schools of education directorate at Najaf. The data are collected through the use utilization of the developed questionnaire and utilizing a checklist technique, which consists of two parts (1) A socio-demographic characteristics form that consists of 10 items (2) Child Symptom Inventory-4 (CSI-4) is a DSM-IV-referenced rating scale that screens for emotional and behavioural symptoms of childhood disorders. Parent (97 items) and teacher versions (77 items). The CSI-4: Parent Checklist contains screens for 15 emotional and behavioural disorders, and the CSI-4: Teacher Checklist contains screens for 13 emotional and behavioural disorders. The CSI-4 can be scored to derive Symptom Count Scores or Symptom Severity scores. The reliability of the questionnaire is determined through a pilot study and the validity through a panel of (15) experts. Results The findings of the present study indicate that preschool children's socio-characteristics affect the emotional and behavioural problems domains. The maximal effect is presented by the father and mother characteristics domains. There is a significant relationship between a live father, alive mother, father job, and mother job with emotional and behavioural symptoms of childhood disorders domains. There is a non-significant relationship between the age of the child, gender, class number, and sequence of a child with emotional and behavioural symptoms of childhood disorders domains. Conclusion: The study concludes that the emotional and behavioural symptoms of childhood disorders most commonly occurs among preschool children in male than in the female child. Emotional and behavioural problems in children most occur at the age of five years. Behavioural problems in children do not affect a child's age, gender, and sequence. Also, the study confirmed that the behavioral problems of children affect negatively the parent's jobs. Recommendations The study recommends providing support for families of children with emotional and behavioural problems, especially psychological ones, and working on introducing caregivers to know wide information about the early detection of emotional and behavioural problems in children to prevent them and ways to deal with behaviours of odd and Family to Family Education Programs to existing services in community mental health programs. And health-oriented mass media approach should be employed by the Ministry of Health and Ministry of Education to increase population knowledge and awareness about emotional and behavioural problems among preschool children.

Parenting confidence and social support as predictors of coping strategies in parents of children newly diagnosed with autism spectrum disorder: A cross-sectional study.

The aims of the study were to describe coping strategies in parents of children with autism spectrum disorder at the early stage of diagnosis and to examine the predictive effects of parenting confidence and social support on coping strategies. A descriptive cross-sectional study. A convenience sample of 193 parents of children newly diagnosed with autism spectrum disorder in Guangzhou, China, were included from October 2020 to January 2021. The Simplified Coping Style Questionnaire, Parenting Sense of Competence Scale and Social Support Rating Scale were employed for data collection. Multiple hierarchical regression analyses examined the relationship between coping strategies and the independent variables. The mean positive coping strategies score was higher than the negative coping strategies score. Parenting efficacy, subjective support and support utilization predicted positive coping strategies, and parenting satisfaction was a protective factor against negative coping strategies. Parents tend to engage in positive coping at the early stage of diagnosis. Improving parenting confidence and social support might help parents adopt positive coping strategies and prevent negative coping. More effective and long-term support for families of children with autism spectrum disorder is expected. Interventions should be focused on enhancing parenting satisfaction and efficacy to employ positive coping strategies and decrease negative coping. We adhered to EQUATOR guidelines and reported results based on STROBE guidelines. No patient or public involvement.

The importance of multidisciplinary and family support in children with Type 1 Diabetes Mellitus: an integrative review

Introduction: Multiprofessional support for families that have a child with DM1 seems to be essential, since this chronic condition directly interferes with the family's daily life and requires treatment that requires constant monitoring throughout life. Objectives: To analyze the importance of multidisciplinary and, above all, family support in children with DM1. Methodology: This is an integrative literature review, prepared and conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flowchart. The chosen databases were SciELO, LILACS and PubMed and the following descriptors were defined: “diabetes mellitus tipo 1”, “crianças” and “equipe multiprofissional” and their variations and combinations in English. Results and discussion: After the search, 9 articles were selected. According to the results, the multidisciplinary team acts in 3 ways in the care of children and adolescents with DM1: building long-term relationships, integrating knowledge through multidisciplinary teamwork and ensuring adequate documentation. Different professional groups must work as a team in order to provide optimal conditions for high-quality care for these patients. As for family support, it is essential for greater patient autonomy during treatment. Conclusions: The good relationship between the patient's family and the strong performance of a multidisciplinary team present are factors that directly and positively impact the results of the child's exams and their well-being.

Predictors of Access to Early Support in Families of Children with Suspected or Diagnosed Developmental Disabilities in the United Kingdom

This study examined predictors of access to early support amongst families of 0-6-year-old children with suspected or diagnosed developmental disabilities in the United Kingdom. Using survey data from 673 families, multiple regression models were fitted for three outcomes: intervention access, access to early support sources, and unmet need for early support sources. Developmental disability diagnosis and caregiver educational level were associated with intervention access and early support access. Early support access was also associated with child physical health, adaptive skills, caregiver ethnicity, informal support, and statutory statement of special educational needs. Unmet need for early support was associated with economic deprivation, the number of household caregivers, and informal support. Multiple factors influence access to early support. Key implications include enhancing processes for formal identification of need, addressing socioeconomic disparities (e.g., reducing inequalities, increasing funding for services), and providing more accessible services (e.g., coordinating support across services, flexible service provision).

Identifying neurodevelopmental disabilities from nationalised preschool health check.

Models of psychometric screening to identify individuals with neurodevelopmental disabilities (NDDs) have had limited success. In Aotearoa/New Zealand, routine developmental surveillance of preschool children is undertaken using the Before School Check (B4SC), which includes psychometric and physical health screening instruments. This study aimed to determine whether combining multiple screening measures could improve the prediction of NDDs. Linked administrative health data were used to identify NDDs, including attention deficit hyperactivity disorder, autism spectrum disorder and intellectual disability, within a multi-year national cohort of children who undertook the B4SC. Cox proportional hazards models, with different combinations of potential predictors, were used to predict onset of a NDD. Harrell's c-statistic for composite models were compared with a model representing recommended cutoff psychometric scores for referral in New Zealand. Data were examined for 287,754 children, and NDDs were identified in 10,953 (3.8%). The best-performing composite model combining the Strengths and Difficulties Questionnaire, the Parental Evaluation of Developmental Status, vision screening and biological sex had 'excellent' predictive power (C-statistic: 0.83) compared with existing referral pathways which had 'poor' predictive power (C-statistic: 0.68). In addition, the composite model was able to improve the sensitivity of NDD diagnosis detection by 13% without any reduction in specificity. Combination of B4SC screening measures using composite modelling could lead to significantly improved identification of preschool children with NDDs when compared with surveillance that rely on individual psychometric test results alone. This may optimise access to academic, personal and family support for children with NDDs.

Vision screening outcomes of 4-5 year-olds reflect the social gradient

ABSTRACT Clinical relevance Children in socioeconomically disadvantaged communities often do not access follow-up eye care services when referred from vision screenings; whether this is due to lack of availability is not known. This paper highlights the need for vision and eye care for vulnerable children with practicing clinical optometrists well placed to provide vision care. Background Vision impairments develop from a young age and may inhibit learning experiences and impact life outcomes. Vision screening to detect and refer vision abnormalities supports children in their education and prevents minor vision impairments from worsening. This research describes outcomes from a vision screening programme for 4– to 5-year-olds delivered in Queensland, Australia. Methods The programme involved all prep children from participating schools in Queensland. Vision screening was conducted with the Parr 4 m Visual Acuity Test and Welch Allyn Spot Vision Screener. A cross-sectional study design was adopted. Descriptive data analyses explored the frequency of vision screening and referral outcomes. Inferential analyses examined associations between vision screening and referral outcomes with socio-economic indexes for areas (SEIFA) scores . Results Of 71,003 prep students screened, 4,855 (6.8%) received a referral recommendation. A higher proportion of children who received a referral recommendation was from more disadvantaged locations (?2 = 109.16, p < 0.001). Of the students referred, 3,017 were seen by an eye health professional. Further vision assessment of students by an eye health professional revealed that 43.3% of the referred children were diagnosed with a vision abnormality, 18.9% had no vision abnormality and 37.7% had an ‘undetermined’ diagnosis. A higher proportion of children confirmed with a vision abnormality were from more disadvantaged locations (?2 = 52.27, p < 0.001). Conclusion It is important that vision screening programmes target disadvantaged populations and support families of children who require further health assessment to access health services.

Influence of cochlear implants on hearing-related quality of life: results from Chinese children with cochlear implants entering mainstream education

ObjectivesThis study aimed to 1) assess the hearing-related Quality of Life (QoL) of children with cochlear implants (CIs) in China and 2) investigate the impact of CI in children and of the socio-demographic backgrounds of their guardians on the hearing-related QoL of children with CIs in the Chinese mainstream education system. MethodsThis study used the Mandarin Children with Cochlear Implants: Parental Perspectives questionnaire (MPP), which assessed the communication capability, auditory perception, self-independence, level of happiness with family, social interaction, academic performance, outcome assessment for CI, and level of family support in children with CIs. Both univariate and multiple linear regression analyses were performed to identify the relationship of CI in children and the socio-demographic backgrounds of their guardians with hearing-related QoL in children with CI. ResultA total of 124 responses were collected, and they indicated satisfaction and improvement across all aspects of the MPP Questionnaire. Statistical analysis revealed that an earlier age of cochlear implantation (≤3 years old) could improve the communication capabilities, self-independence, social interaction performance, and academic performance of children with CIs. In addition, children with CI from the urban regions demonstrated better social interaction performance than that by those from the rural regions of China. ConclusionCIs can improve hearing-related QoL in children with pre-lingual or congenital hearing loss entering the mainstream education system in China. This study showed that early age of cochlear implantation was critical for successful long-term auditory development and academic achievement in children with CIs in China. Therefore, healthcare professionals and educators in China should advocate for CI for children with severe congenital or pre-lingual hearing loss.

Marital Satisfaction and Perceived Family Support in Families of Children with Autistic Spectrum Disorder: Dyadic Analysis.

Background: Raising children with autism spectrum disorder (ASD) causes tremendous stress for parents that may lead to marital conflict and relationship dissatisfaction. Many factors are associated with parent relationships including severity of autistic behaviors and social support. This study aimed to investigate whether severity of autistic behaviors, perceived family support, and complementarity of interpersonal styles between husbands and wives predicted couple satisfaction among the parents of children with ASD. Method: Seven hundred ninety-seven parent dyads of children aged 7–14 years old with ASD participated in the study. Measurements used included couple satisfaction index, perceived family support using the Multidimensional Scale of Perceived Social Support, inter-personal style using the inventory of interpersonal problems, the ABC autism checklists as well as sociodemographic and related factors. The Actor Partner Interdependence Model estimated by multilevel modeling was used for analysis. Results: Perceived family support was relevant in married couples regarding their marital relationship, but the effects on husbands and wives differed. Husbands’ relationship satisfaction was predicted by how they perceived being supported by family. The severity of autistic behaviors predicted relationship satisfaction but only actor effect. Negative prediction of interpersonal complementarity on couple satisfaction was observed. In addition, time spent on raising children had a negative impact on the quality of the relationship. Partner effect of time spent was observed among women. Conclusion: Dyadic analysis using an actor–partner independence model confirmed perception of family support predicts relationship satisfaction among parents of children with ASD in addition to the severity of autistic behaviors and time spent caring for children. Complementarity of individual interpersonal style had no effect on couple satisfaction. This research suggests implications for interventions regarding building skills that elicit support from family members.

Understanding the Implications of Peer Support for Families of Children With Neurodevelopmental and Intellectual Disabilities: A Scoping Review.

Background: Families are integrally involved in day-to-day caregiving of children with neurodevelopmental and intellectual disabilities (NDID). Given the widespread and increasing prevalence of children with NDID and the impact of family caregiving on psychological, social, and economic implications for both the child and family, understanding and supporting these families is an important public health concern.Objective: We conducted a scoping review on peer support networks to understand their implications on families. Considering increasing prevalence of NDID's, understanding the implications of existing networks is critical to improve and nurture future support networks that can complement and reduce the burden on existing formal support systems.Design: A comprehensive search of multiple databases was conducted. Articles were screened by two reviewers and any disagreements were resolved by a third reviewer. We explored existing research on parent-to-parent peer support networks, which included networks that developed informally as well as those that involved a formal facilitator for the group interpersonal processes. There were no limits on the study design, date and setting of the articles. We included all research studies in English that included an identifier for (i) “peer support networks,” (ii) “children with neurodevelopmental and intellectual disabilities” and (iii) “family caregiver outcomes.”Results: We identified 36 articles. Majority of the studies were conducted in North America, and were face to face networks. They included families of children with a wide range of NDIDs. Relevant information extracted from different studies highlighted peer support network characteristics and development process, needs of family caregivers attending these networks, factors affecting caregiver participation and the impact of peer support networks on family caregivers. These networks represent a way to strengthen family caregivers, developing resilience and social interactions. Family caregivers sharing similar experiences support one another and provide critical information to each other. Although results are encouraging, future studies incorporating improved study designs are needed to better evaluate the effectiveness of peer support networks. Furthermore, studies where peer support networks develop organically while the child is supported are warranted.Conclusion: Although results obtained are encouraging, our findings support the need for further research studies of peer support networks with better designs and more detailed description of the factors involved in the development.

Associations of preschoolers’ dietary patterns with eating behaviors and parental feeding practices at a 12-month follow-up of obesity treatment

Although dietary patterns are key to the management of childhood obesity, they are rarely assessed and thus poorly understood. This study examines preschoolers' dietary patterns and correlates 12 months after the start of obesity treatment (n = 99, mean age 5.2 years, 52% girls). A food frequency questionnaire (FFQ), the Child Eating Behavior Questionnaire (CEBQ), Child Feeding Questionnaire (CFQ) and Lifestyle Behavior Checklist (LBC) were answered by parents to assess children's food intake, eating behaviors, parental feeding practices, and obesity-related behaviors, respectively. Principal component analysis identified dietary patterns based on FFQ data. Through multiple linear regressions we examined correlations between a healthy (HD) and a less healthy (LHD) dietary pattern and mean scores of the CEBQ, CFQ, LBC scales as well as BMI z-scores. The reported intake of items in the LHD decreased after treatment while no differences were found for the HD. Children's eating behaviors, in particular food fussiness, showed consistent associations with diet (b = −0.39, 95% CI −0.63, −0.14 for HD and b = 0.41, 95% CI 0.15, 0.66 for LHD). Feeding practices and obesity-related behaviours were weakly associated with the dietary patterns (HD and Monitoring: b = 0.36, 95% CI 0.09, 0.62; LHD and Screen time b = 0.08, 95% CI 0.01, 0.15). Among the measured variables, eating behaviors had the largest impact on children's dietary patterns. The LHD was associated with a higher BMI z-score but no associations were found between changes in LHD intake and changes in BMI z-scores. Our findings suggest that decreasing food fussiness in children with obesity is key to positive dietary changes. Assessment of children's eating behaviors can help tailor dietary advice and provide support for families of children with obesity.

Correction to: Perceptions of Support in Chinese Mothers of a Child with Intellectual Disability

In the original published version of this article the Funding Information was not captured. Thus, the authors wish to add this information ‘National Office for Education Sciences Planning in China (Project Title: Parenting and support for families of children with disabilities from an ecological perspective, Project Number: CHA170264)’. This erratum is presented to fix the error. The original article has been corrected.

Satisfaction of Early Intervention Programme among Parents of Children with Autism Spectrum Disorder (ASD): A Pilot Study in Malaysia

Early intervention services play an essential role in order to support families of the children with autism spectrum disorder (ASD). In Malaysia, initial development of early intervention services has started for children with ASD. In order to improve the quality of early intervention services, it is important to ascertain the perceptions of parents with children with ASD. Thus, this study was aimed to determine the correlation between demographic of parents with children with ASD related to parental satisfaction to the early intervention services at GENIUS Kurnia Centre, Malaysia. A total of 156 parents of children with ASD aged between 3 to 7 years old who were receiving the early intervention programme, participated through stratified random sampling completed the sociodemographic survey and Client Satisfaction Questionnaire (CSQ-8). All 156 respondents reported a high level of satisfaction through calculation of the mean score of CSQ-8, which was 28.69, with a range from 20 to 32 (SD = 3.17). Sociodemographic characteristics such as child's gender, child's current and diagnosis age, presence of health problems, parent's age and educational level, and family monthly income were found to be not related to satisfaction. Our pilot study suggested that this early intervention programme provides essential support for families of children with ASD regardless of their demographic background. In future research, it is recommended to explore other variables that are linked with parents’ satisfactions. Additionally, qualitative approaches such as interviews, should be used to measure parental satisfaction, as this will provide more insight on the parents’ experiences.

Identifying gaps in parental support for families of children with hypoplastic left heart syndrome

The purpose of this study is to identify gaps in support for parents of children with Hypoplastic Left Heart Syndrome. Using a mixed-methods approach, the researchers first studied the parental and care team experience through interviews of Hypoplastic Left Heart Syndrome mothers and members of the inter-professional care team and then conducted an international survey of 690 Hypoplastic Left Heart Syndrome primary caregivers to validate the qualitative findings. Parental and care team interviews revealed three main gaps in parental support, including lack of open communication, unrealistic parental expectations, and unclear inter-professional team roles. Survey results found that parents whose children were diagnosed with Hypoplastic Left Heart Syndrome after birth indicated significant dissatisfaction with the care team's open communication and welcoming of feedback (p = 0.008). As parents progress through the stages of surgical intervention, they also indicate significant dissatisfaction with the care team's anticipation of parental emotional needs and provision of coping resources (p = 0.003). Parental support interventions should focus on providing resources to help parents cope, helping the care team model open communication, and welcoming feedback on the parental experience. Interventions should be piloted with parents who are in the later stages of the surgical intervention timeline or whose children were diagnosed after birth as they are the populations who perceived the least support within this study.

The role of food selectivity in the association between child autistic traits and constipation.

ObjectiveThis study examines the association between child autistic traits and constipation symptoms, and explores whether this association is mediated by food selectivity.MethodThe sample included participants (N = 2,818) from the population‐based birth cohort, Generation R (Rotterdam, the Netherlands). Parents reported their child's autistic traits at 6 years (using the Social Responsiveness Scale), food selectivity at 10 years (using the Stanford Feeding Questionnaire) and the frequency and severity of constipation symptoms they experienced at 10 years (using the ROME III functional constipation diagnostic criteria). Mediation analyses tested mediation through food selectivity in the association of autistic traits and the number of constipation symptoms, adjusting for covariates.ResultsThere was a positive association between parent‐reported child autistic traits and constipation symptoms (r = 0.08, p < .001). We identified a significant indirect effect of autistic traits on constipation symptoms through food selectivity (β = 0.008, 95% Confidence Interval: 0.002, 0.014).DiscussionThis study provides empirical support for the mediating role of food selectivity in the association between autistic traits and constipation. Behavioral interventions aimed to target food selectivity and support families of children with autistic traits may bolster conventional medical and nutritional treatments to alleviate gastrointestinal symptoms like constipation.

Supporting families of children with an undiagnosed genetic condition: Using co-design to ensure the right person is in the right post doing the right job.

Families and professionals caring for a child without a definitive diagnosis face unique challenges, particularly in relation to managing uncertainty; access to healthcare; obtaining relevant information and support; and trying to navigate a healthcare system that is often fragmented. We used co-design to inform the establishment of the first UK specialist nursing post dedicated to working with children with undiagnosed genetic conditions and their families. (1) To understand what families and hospital staff want from the service; (2) To understand how the post should be operationalized in practice; (3) To develop the job description and person specification for the postholder. A range of approaches were used to collect data: interviews (nine parents and 10 hospital staff); a focus group (three parents); a creative workshop (six patients and siblings); and an online forum (81 parents). Data were analyzed using framework and thematic analysis. The strands of data were brought together and reviewed as a whole to formulate the postholder's job description and person specification. Stakeholders identified nine key elements to the role which were incorporated into the job description: practical support; point of contact; community liaison; signposting to other services; care coordination; supporting families; advocacy; raising awareness; and emotional support. Highlighted in this paper are the practical aspects of engaging and involving all relevant stakeholders in the process of co-designing a new post and subsequent staff recruitment. The flexibility employed in the setting and methods of data collection were instrumental in ensuring that the views of a diverse range of participants were ascertained. A major consideration is the resources required to undertake co-design, in terms of time and finances. We believe that the resources required for the co-design are offset by the advantages of having the right person in the right post, doing the right job.