Disseminating the F-Words for Child Development to Parents of Children With Developmental Disabilities in Iran: A Qualitative Pilot Feasibility Study.

BACKGROUND: Attitudes toward childhood disability have historically focused on biomedical efforts on 'fixing'. The introduction of WHO's ICF framework for health and Canadian researchers' 'F-words' (functioning, fitness, fun, friends, family and future) have significantly changed the field. To explore whether the F-words ideas influenced parents' perspectives on their child's abilities and rehabilitation goals, this qualitative pilot study introduced the F-words to Iranian parents with a child with a developmental disability. METHODS: This study was conducted in Tabriz, Iran, in 2023, using Iranian educational F-words materials built on ideas available on the CanChild F-words Knowledge Hub. Data were collected through semistructured interviews with five mothers of children <5 years old with a developmental disability before and after attending an 'F-words Awareness Session' and analysed using thematic analysis. RESULTS: In the preinterviews, six themes (and 20 subthemes) were identified: (i) routines (5); (ii) challenges (4); (iii) parental concerns (3); (iv) child's needs and priorities (3); (v) the role of parents in satisfying needs and challenges (2); and (vi) expectations of rehabilitation (3). In the postinterview, the same six themes and four additional subthemes emerged. CONCLUSION: Findings from the pilot study showed that the intervention had an impact on the attitudes and behaviours of participants. Specifically, teaching about the F-words reduced parents' emphasis on the concept of 'normality'. Families' positive response to the 'F-words Awareness Session' indicates their openness to incorporating this approach into their daily lives. These findings highlight the potential benefits of utilizing the F-words in rehabilitation in Iran. Studies like these can serve as a foundation for developing effective strategies for integrating the F-words into existing rehabilitation practices in Iran.

Subjective well-being and social inclusion at school for students with a disability, according to their parents, in France.

BACKGROUND: Providing inclusive, quality education for all children is one of the United Nations' sustainable development goals for 2030. AIMS: The aim of this study, carried out in France among 491 parents of children with a disability aged 3 to 18 and enrolled in ordinary schools, is to measure the well-being and social inclusion of children and to identify the factors that promote well-being and social inclusion at school. METHODS AND PROCEDURES: The parents fill in various questionnaires relating to the well-being and social inclusion of their child, the quality of their relationship with the teacher and their satisfaction with the accommodations offered at school. They also provide information about their child and their socio-economic situation. OUTCOMES AND RESULTS: Regression analyses show that well-being and social inclusion depend on the nature of the child's disability and decrease with age but do not significantly depend on child's gender and academic level or social background. Furthermore, well-being and social inclusion can be significantly improved when the quality of the parent-teacher relationship and school accommodations are satisfying. CONCLUSIONS AND IMPLICATIONS: The results of this study encourage the development of quality parent-teacher relationships to promote well-being at school.

Evaluation of Parents' Perceptions of the Dental and Oral Health in Children with Disability in the Bandung City.

Background: Children with disability have a risk of poor dental health because of their mental and physical limitations. They depend on caregivers in their daily life Parents have an important role in maintaining children's dental health. Parents attitudes can be influenced by parents' perceptions of children's dental health. This study explored parental perceptions regarding the dental and oral health of children with special needs in Bandung City. Methods: This study utilized a descriptive observational research using a cross-sectional survey. The subjects in this study were 239 parents who had children aged 0-18 years who were taken from 9 special schools. The variables of this study were parents' perceptions and the dental and oral health status of children with disability. Primary data were obtained through a validated questionnaire. Results: Parents' perceptions of the dental and oral health of children with disability consists of 84.94% good enough perceptions, 12.13% good perceptions, and 2.93% bad perceptions. Conclusion: Most parents have a fairly good perception of the dental and oral health of children with special needs.

The effect of cognitive reappraisal on emotion recognition in mothers of children with special needs.

Intrinsic family dynamics are an important factor in the development of children with special needs, and mothers' emotion regulation ability influences children's development to some extent. This study examined the intrinsic mechanism of cognitive reappraisal of emotion regulation strategies affecting the emotion recognition ability of mothers of children with special needs. Results indicated that mothers of children with special needs recognized negative emotions significantly faster than typically developing child mothers. After receiving cognitive reappraisal emotion regulation strategies, they significantly improved emotional recognition of surprise and reduced attention bias towards anger. Overall, mothers of children with special needs may have obvious attention bias towards negative emotions, and cognitive reappraisal can target negative emotions to help them to better improve emotional resilience.

"My child is my job now" - Care, work and careers of mothers with disabled children in the Norwegian welfare state.

In this article, we investigate how mothers of disabled children in Norway experience the work-family conflict and its impact on their careers, highlighting the role of provision of health and welfare services. We use a qualitative multiple case study of 11 mothers with disabled children. Although Norway is characterized by high labor market participation for women and an emphasis on care policies that support working mothers, we show that mothers of disabled children still experience considerable work-family conflict, creating ill-health and income-related struggles. This conflict is heavily influenced by inadequate support from health and welfare services. However, some of the mothers also highlighted how caring for their disabled children led to growth and new career paths, using their care experiences to craft new careers. Drawing on Fraser's (2022) concept of the care crunch and a relational perspective on disability, we demonstrate how the social organization of care for disabled children undervalues the care work mothers do and puts disabled children at risk of receiving insufficient and unequal services.

Fatherhood in disability rehabilitation in the United Arab Emirates: Exploring fathers' involvement in raising children with disabilities.

BACKGROUND: The first agent of socialisation is the family, who are expected to facilitate the inclusion of children in societal activities. While mothers' voices have been widely captured in the literature regarding their experiences raising children with disabilities, fathers' perceptions of their knowledge of and involvement in the development of children with disabilities have been understudied, particularly in non-Western contexts. AIM: The main aim of this study was to examine fathers' perceptions of their involvement in raising children with disabilities in the United Arab Emirates. METHODS AND PROCEDURES: In total, 469 fathers were recruited to understand their involvement in raising their children with disabilities. The Fathers' Involvement in Development and Rehabilitation Scale was used to collect data, which were analysed using SPSS and AMOS. OUTCOMES AND RESULTS: The results showed that fathers rated themselves highly for their attitudes, support, and participation in training to support their children with disabilities. Demographic variables, such as nationality and educational qualifications, provided additional insight into their involvement in raising their children with disabilities. CONCLUSIONS AND IMPLICATIONS: The study concludes with suggestions for training programmes to change fathers' attitudes towards children with disabilities, as such programmes can enable them to better support their children's development.

Mental health of parents of children and adolescents who require special health care.

OBJECTIVE: To identify the manifestations presented by parents of children and adolescents who require special health attention that can impact their mental health. METHODS: exploratory, qualitative research, based on the concept of vulnerability, with data collection carried out through interviews with 18 parents of children and adolescents with special health care needs, hospitalized in the pediatric ward of a hospital in Paraná, between May/2017 and May/ 2018. Data analyzed by inductive thematic analysis. RESULTS: parents experienced situations of vulnerability when providing care at home, with repercussions on their mental health, expressed by manifestations of lack of protection, anxiety and depression. FINAL CONSIDERATIONS: It is important that health professionals seek to expand actions to promote care and reduce situations that generate threats, insecurities, concerns and damage to the health of parents, which can impact and further weaken care for children and adolescents who need attention especially health.

[Trust in socialization institutions as a necessary social condition for effective integration of disabled children into society].

The article is devoted to the analysis of the problem of trust in the institutions of socialization of children with disabilities. The role of such institutions of socialization of disabled children as family, education, healthcare, public organizations, and the media is analyzed. The analysis was based on the results of a sociological study conducted in May-June 2023 among family members raising disabled children (Moscow, St. Petersburg, Belgorod, Kursk). The study revealed significant differences in respondents' assessments of their trust in socialization institutions. It has been established that the media has become an outsider of trust. In the course of the analysis, the authors concluded that it is necessary to apply an integrated approach to the activities of institutions for the socialization of children with disabilities, which should be based on interdepartmental interaction «family - NGOs - authorities - healthcare, education - media - business¼. The proposed approach, according to the authors, ensures the effectiveness, targeting and transparency of activities.

Online sexual abuse of children with disabilities: Analyzing reports of social workers' case files in Israel.

BACKGROUND: Online child sexual abuse (OCSA) is a growing social concern. However, its manifestations among children with disabilities (CWDs), who face an increased risk of sexual abuse, remain largely unexamined. OBJECTIVE: This study aims to fill this gap by examining professionals' perspectives of the OCSA of CWDs through their work at the 105 Hotline, an Israeli national call center that accepts queries and reports of the cyber victimization of minors. METHODS: A mixed methods research design was employed. A quantitative analysis was performed on 114 case files involving the OCSA of CWDs, followed by a thematic content analysis of 23 follow-up files by social workers. RESULTS: The quantitative findings revealed various characteristics of the survivors, their families, and OCSA. The qualitative analysis revealed that professionals indicate multiple interrelated risk factors for the OCSA of CWDs on three levels: child, related to the child's characteristics and disability traits; family, referring to familial complexities, parenting challenges, and socio-economic position; and relational, referring to the online abusive relationships between the perpetrator and the survivor. Furthermore, the online platform comprised characteristics that enhanced the risk of OCSA of CWDs. CONCLUSIONS: The understanding that the OCSA of CWDs as a compounded risk that encompasses personal and environmental risk dimensions is necessary and should guide all professionals' decisions and actions. There is also an urgent need for governmental and community efforts to develop measures, policies, and support systems to reduce OCSA risks for CWDs. Moreover, knowledge and interventions should be developed for professionals and parents of CWDs to improve the identification and response to this overlooked phenomenon.

Perceived discrimination among caregivers of children with disabilities in China: Unraveling the effects of social determinants.

PURPOSE: Although discrimination has gained increasing attention in research and practice intervention for family caregivers of children with disabilities, little is known about the social determinants that associate with the perceived discrimination among caregivers, especially in non-Western contexts. This study aims to examine the socio-familial and child-level determinants of perceived discrimination among family caregivers of children with disabilities in China. METHOD: This study drew from a population-based cross-sectional survey in Shenzhen, China. Proportional quota sampling was conducted to get data from 2500 family caregivers of children with disabilities in rehabilitation service centers (response rate = 94.9%, n = 2373), accounting for 25% of the total population of children with disabilities receiving service in Shenzhen. Latent profile analysis was conducted to categorize three perceived discrimination groups among caregivers (i.e., severe perceived discrimination group, moderate perceived discrimination group, and low perceived discrimination group). The multinomial logistic regression models were conducted to test the association between these social determinants and perceived discrimination. RESULTS: Most caregivers (82.9%) reported moderate or severe levels of perceived discrimination. Caregivers of children with moderate and severe impairments and children with mental and multiple disabilities were more vulnerable to perceiving severe social discrimination. Socio-familial characteristics, particularly the intersectionality between gender and employment, influence caregivers' perceived discrimination. CONCLUSION: Caregivers of children with disabilities experience pervasive social discrimination in contemporary urban China. Our study demonstrates that the social construction of disablism and the affiliate discrimination against family caregivers of children with disabilities is complex and multidimensional and depends upon the children's disability and the caregivers' socio-demographic characteristics.

Adaptive adjustment to the needs of families caring for children and adolescents with physical disabilities in north-eastern Tanzania: a grounded-theory study.

BACKGROUND: Family interactions, which are always multi-faceted, are complicated further by family members with disabilities. In resource-poor settings, policies and programmes that address the needs of and challenges faced by families are often inaccessible or unavailable. Approximately 13% of the families in Tanzania have at least one member with a disability, yet family-centred research on caring for disabled children and adolescents is scarce in this context. OBJECTIVE: The aim is to explore the needs and challenges faced by families that care for children and adolescents with physical disabilities in the Kilimanjaro Region of north-eastern Tanzania. METHODS: This qualitative study had a constructivist grounded-theory design. In-depth interviews, using a semi-structured interview guide based on the social-capital framework, were conducted with 12 female participants aged between 24 and 80. A conceptual model of family needs, inspired by Maslow's hierarchy of needs, informed the analysis. RESULTS: Challenging needs were grouped into five categories, which were linked to Maslow's hierarchy of needs and related to the central concept of 'adaptive adjustment': (1) 'barely surviving'; (2) 'safety needs in jeopardy'; (3) 'sociocultural protection'; (4) 'self-esteem far beyond reach', and (5) 'dreaming of self-actualisation'. CONCLUSION: Families caring for children and adolescents with physical disabilities in north-eastern Tanzania have needs that extend beyond the available and accessible resources. Families can adjust and adapt by avoiding certain situations, accepting the reality of their circumstances and exploring alternative ways of coping. A sustainable support system, including social networks, is essential for meeting basic needs and ensuring safety.

Main findings: The challenges associated with caring for children and adolescents with disabilities are related to various environmental and social barriers, any of which can significantly impact the wellbeing of all family members.Added knowledge: In the context of a study conducted in north-eastern Tanzania, both nuclear and extended family networks were found to be valuable sources of support for these families.Global health impact for policy and action: Families must take considerable steps to strengthen their sociocultural support systems while, the support of the government and other stakeholders is crucial in addressing the challenges faced by families caring for children and adolescents with disabilities.

Enhancing the quality of life of mothers of children with intellectual disabilities or Autism: The role of disability-specific support.

BACKGROUND: A holistic approach considering the physical, emotional, and social dimensions of living with a disability is essential for developing effective support systems, policies, and interventions. The quality of life of individuals with disabilities is interrelated with the well-being of their families making family quality of life (FQOL) a crucial aspect of study. AIMS: This study explores the effects of support on FQOL among Saudi Arabian families with children diagnosed with intellectual disabilities or autism, from the perspectives of 269 mothers. METHODS AND PROCEDURES: Through a survey, we examined how disability-related support correlates with FQOL, emphasizing the need for personalized support systems. We employed multiple regression analysis to assess the impact of various factors on FQOL, including the type and severity of disability, family income, and marital status. OUTCOMES AND RESULTS: The findings revealed that disability-related support is a significant predictor of FQOL, highlighting its critical role in enhancing the well-being of families. CONCLUSIONS AND IMPLICATIONS: This study contributes to the scarce regional literature, and underscores the importance of inclusive social policies tailored to the diverse needs of families with disabilities.

"As a parent, I want to do more for my child": A phenomenological approach to understanding the experiences of parents involved in surgical decision-making for children with congenital hand anomalies.

BACKGROUND: A congenital anomaly of the hand can affect both function and appearance, and places a stressful psychological burden on the family, especially parents. Surgery during infancy may prevent later disabilities, but little is known of the importance of parents' involvement in these decisions in terms of psychological adjustment or treatment satisfaction. OBJECTIVE: To understand parents' perceptions of involvement in their child's surgery for limb anomaly, and their preferences for the support of healthcare professionals. Results should lead to recommended interventions to improve familial adjustment to the child's condition. METHODS: Qualitative data was collected from semi-structured confidential self-reported interviews of 35 parents (65.7 % mothers) of children who had received reconstructive surgery for congenital hand anomaly (at age 24.89 ± 9.26 months); interviews were coincident with the 1-month postoperative follow-up. The parents ranged in age, gender, educational background, economic status, and type of anomaly. Data analysis referenced Colaizzi's phenomenological approach. RESULTS: The concerns of the parents were consolidated into three themes: attitudes toward Parental involvement in surgical decision-making; status of parental involvement in Surgical decision-making; and need for help and support. CONCLUSION: Some parents were comfortable leaving surgical decisions entirely to the medical staff, but most preferred active participation and were disappointed at their lack of inclusion. The maximum benefit from surgery for congenital abnormalities in infancy is achieved when the parents and extended families have access to the expertise, skills, encouragement, and psychological support of healthcare providers.

The physical and psychosocial benefits of a family judo program for parents of children with Autism Spectrum Disorder: A pilot study.

BACKGROUND: Parents of children with Autism Spectrum Disorder (ASD) tend to have high levels of stress and poor health habits. There is a lack of interventions that focus on improving health outcomes in parents of children with ASD. OBJECTIVE: To examine the physical and psychosocial effects of a family-based judo program on parents of children diagnosed with ASD. METHODS: This study utilized a pre-post single group design. Eighteen parent-child dyads participated in a 14-week judo program for families of children with ASD. Judo sessions were held once a week for 45 min. Parents wore wrist accelerometers to assess physical activity/sleep quality, and completed surveys regarding self-reported stress levels pre- and post-judo. Parents also completed open-ended questions regarding their experience in the program. Paired sample t-tests were conducted to examine changes in stress, physical activity, and sleep quality from pre-to post-program. RESULTS: Both a decrease in parental stress (47.77 vs. 41.61, p < 0.01) and an increase in minutes per day of physical activity (35.49 vs 45.94, p = 0.002) were observed from baseline to post-program. Fourteen of the 18 parents (78 %) reported at least one psychosocial benefit (e.g. increased self-confidence) or physical health benefit (e.g. increased physical activity) from participation in the program. CONCLUSIONS: A family judo program may provide health benefits, such as reducing stress levels and increasing physical activity in parents of children with ASD. Further research involving larger sample sizes is necessary to better determine the effects of judo on both parents and their children with ASD.

Effect of resilience training on stress, hope and psychological toughness of mothers living with mentally and physically disabled children.

INTRODUCTION: Welfare and rehabilitation centers prioritize the welfare of children over the mental and physical well-being of mothers. The present study aimed to determine the impact of resilience training on stress, hope, and psychological toughness of mothers living with mentally and physically disabled children. MATERIALS AND METHODS: This intervention study was conducted in the Hamadan (Iran) Welfare and Rehabilitation Center in 2023. To this end, 70 parents of children with mental and physical disabilities were randomly selected and then randomly assigned to two control and intervention groups. In the intervention group, 9 resilience training sessions were conducted, each lasting 60 min. These meetings were held weekly at the welfare and rehabilitation center. The resilience training included three components: (1) exploring the concept of resilience within families and the attributes of individuals with high resilience, (2) examining internal and external factors that influence resilience, and (3) studying the strategies for enhancing family resilience. No intervention was performed in the control group. Data collection was done using parental stress, hope, and psychological toughness questionnaire. The mothers of both groups completed the above questionnaires both before and one month after the intervention. Data analysis was performed using chi-square (χ2), Kruskal-Wallis, and t-test with SPSS software (version 23) at a significance level of 0.05. RESULTS: Before the intervention, there was no statistically significant difference in parental stress between the two groups (p = 0.370). However, after the intervention, the difference between the two groups became statistically significant (p = 0.001). Similarly, there was no significant difference in parents' hope before the intervention (p = 0.452), but a significant difference was observed after the intervention (p = 0.001). Besides, parental psychological toughness was not significant before the intervention (p = 0.179) but became significant after the intervention (p = 0.000). CONCLUSION: Based on the results, resilience training reduced parental stress and increased hope and resilience in mothers of the test group. Therefore, resilience training is recommended to lower parental stress and increase the hope and psychological toughness of mothers of mentally and physically disabled children.

The effect of a training program on family stress and life satisfaction: A randomized controlled study of mothers of children with disabilities.

OBJECTIVE: This randomized controlled study focused on mothers of children with disabilities to determine the effect of a training program on family stress and life satisfaction. METHOD: The sample consisted of 52 mothers of children with disabilities (intervention group = 26 and control group = 26). The intervention group participated in a five-session training program on coping mechanisms and life satisfaction. Data were collected using the Questionnaire On Resource And Stress (QRS-FT) and the Satisfaction with Life Scale (SWLS). RESULTS: After the intervention, the mean life satisfaction scores of the intervention group participants increased (p < 0.05), while their mean total score of family stress decreased (p > 0.05). In the control group, the mean life satisfaction scores decreased (p > 0.05), while the mean total score of family stress increased (p < 0.05). CONCLUSION: The intervention helped mothers of children with disabilities experience more satisfaction with life and less family stress. Authorities should consider the outcomes of educational intervention studies and formulate training programs for mothers of children with disabilities. PRACTICAL IMPLICATIONS: Nurses can use interactive educational programs as nursing interventions to help mothers of children with disabilities experience less family stress and more life satisfaction.

Implementation of the My Abilities First Tool: A qualitative study on the perceptions of professionals, caregivers, children, and adolescents with disabilities.

OBJECTIVE: To analyze the perceptions of professionals, caregivers, children, and adolescents with disabilities regarding the implementation of the My Abilities First (MAF) tool in Specialized Child Rehabilitation Centers (CERs). METHOD: This is a qualitative research based on Reflexive Thematic Analysis (RTA). The study involved twenty-seven intentionally selected individuals, comprising 12 physiotherapists, 4 occupational therapists, 11 caregivers, 9 children and 2 adolescents. Participants completed sociodemographic and clinical questionnaires and took part in semi-structured online interviews, focusing on two themes: Positive health approaches and the MAF tool. The study was approved by the local ethics committee (opinion 4.779.175). RESULTS: Reflexive Thematic Analysis of the interviews resulted in two themes: (1) Perceptions regarding the MAF tool as an educational and contributory process to enhance the inclusion and participation of children and adolescents with disabilities, and (2) Barriers and facilitators for the implementation process of the MAF tool. The implementation of MAF was identified as a driving factor in promoting equity and increased participation of children and adolescents with disabilities in various settings, including health, education, and leisure. Interviewees highlighted the need to confront attitudinal, communication, and social barriers that may hinder the implementation of the tool. CONCLUSION: The implementation of the MAF tool was perceived as an innovation due to its focus on the abilities of individuals with disabilities. However, there is a need to restructure it to broaden its scope and access to different contexts in order to confront barriers and enhance the inclusion and participation of children and adolescents with disabilities.

Development of algorithms for estimating the Child Health Utility 9D from Caregiver Priorities and Child Health Index of Life with Disability.

PURPOSE: The primary aim was to determine Child Health Utility 9D (CHU9D) utilities from the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) for non-ambulatory children with cerebral palsy (CP). METHODS: One hundred and eight surveys completed by Australian parents/caregivers of children with CP were analysed. Spearman's coefficients were used to investigate the correlations between the two instruments. Ordinary least square, robust MM-estimator, and generalised linear models (GLM) with four combinations of families and links were developed to estimate CHU9D utilities from either the CPCHILD total score or CPCHILD domains scores. Internal validation was performed using 5-fold cross-validation and random sampling validation. The best performing algorithms were identified based on mean absolute error (MAE), concordance correlation coefficient (CCC), and the difference between predicted and observed means of CHU9D. RESULTS: Moderate correlations (ρ 0.4-0.6) were observed between domains of the CHU9D and CPCHILD instruments. The best performing algorithm when considering the CPCHILD total score was a generalised linear regression (GLM) Gamma family and logit link (MAE = 0.156, CCC = 0.508). Additionally, the GLM Gamma family logit link using CPCHILD comfort and emotion, quality of life, and health domain scores also performed well (MAE = 0.152, CCC = 0.552). CONCLUSION: This study established algorithms for estimating CHU9D utilities from CPCHILD scores for non-ambulatory children with CP. The determined algorithms can be valuable for estimating quality-adjusted life years for cost-utility analysis when only the CPCHILD instrument is available. However, further studies with larger sample sizes and external validation are recommended to validate these findings.

Forgiveness and well-being in mothers of children with disabilities.

OBJECTIVE: To examine the correlations between forgiveness and well-being in mothers of children with disabilities, considering the moderating role of contextual factors. BACKGROUND: Well-being in mothers of children with disabilities is associated with coping with the numerous and unique challenges of motherhood. These are often accompanied by a sense of guilt, harm, and shame. Forgiveness can play an important role in lowering these negative emotions. METHOD: The research was conducted with 174 mothers of children with disabilities, using the Emotional Forgiveness Scale; the Decision to Forgive Scale; and the Oxford Happiness Questionnaire. Contextual factorssuch as: severity of transgression, apology, and the quality of the relationship with the offender were also measured. Moderation analyses were used to examine the associations between the variables. RESULTS: Decisional and emotional forgiveness correlated positively with well-being. Contextual factors moderated only the relationship between emotional forgiveness and well-being. Severity of the transgression and apology had a moderating effect in the case of the Presence of positive emotions, and relationship quality in the case of Reduction of negative emotions. CONCLUSIONS: The well-being of mothers of children with disabilities is associated with both decisional and emotional forgiveness. Contextual factors are an important moderator of the relationship between emotional forgiveness and well-being in these mothers. IMPLICATIONS: Information about the importance of the relationship between forgiveness and well-being can be used to design therapeutic programs and programs supporting mothers of children with disabilities in coping with difficulties and achieving well-being. Such programs can incorporate, for example, forgiveness training.