[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.

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.

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.

"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.

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.

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.

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.

A capacity-building intervention for parents of children with disabilities in rural South India.

BACKGROUND: A disability service organization piloted a parent capacity-building intervention for parents of children with developmental disabilities in rural South India. AIMS: To examine the impact of this parent capacity-building group intervention on parent empowerment, peer support, social inclusion, advocacy skills, and the factors influencing these outcomes. METHODS AND PROCEDURES: A qualitative study recruited 37 participants from 17 parent groups through convenience sampling. Six focus groups occurred six months post the start of this intervention and explored these parents' experiences with the groups and their perceived impacts. OUTCOMES AND RESULTS: Qualitative analysis yielded four main themes and corresponding sub-themes: peer support (feeling peaceful and supported, building self-efficacy), social inclusion (space to share, acceptance and identity), knowledge sharing (increasing awareness, accepting advice), and advocacy (building confidence, making requests). Participation in parent groups provided participants with opportunities to find peer support, utilize knowledge sharing, feel socially included, and build advocacy skills. CONCLUSIONS AND IMPLICATIONS: This study provides a greater understanding of the impact and benefits of parent capacity-building interventions in low-resource settings. Results will improve this intervention and guide other organizations in creating similar programs. WHAT THIS PAPER ADDS: This paper adds perspectives of parents who are caregivers of children with developmental disabilities in rural South India. More specifically, this paper highlights the impact of a parent-focused intervention in group settings in both rural and urban areas. Parent support group interventions are not common in India and low- and middle-income countries and there is a paucity of literature describing these interventions and their impact. In this study, parents described a need for multifaceted interventions to support their child in the community. These parent groups provided space for caregivers of children with developmental disabilities to make connections, feel validated, and grow confidence to utilize new knowledge or advice shared by other parents to further enhance their lives. Further, parent-group settings provide opportunities to build advocacy skills through timely discussions. Parents reported an increase in feelings of acceptance within the group itself but not within the wider community. This highlights the need for involving the wider community in interventions to promote integration for families with children with disabilities.

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.

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.

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.

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.

Perceptions and behaviors of healthcare providers towards rehabilitation support to children with severe malaria-related disability in Ethiopia: A qualitative descriptive study using the Theoretical Domains Framework.

INTRODUCTION: Severe malaria often results in childhood disability. The prevalence of disability related to severe malaria is significant and is estimated to affect up to 53% of severe malaria survivors. In contrast, information is sparse about how healthcare providers in Africa think about or provide rehabilitation support in acute and post-acute phases respectively. Understanding the perceptions and behaviors of healthcare providers treating malaria could help inform malaria-related disability research, policy, and practice, aimed at the providers themselves. This study explored the perceptions and behaviors of healthcare providers towards rehabilitation for children with severe malaria-related disability. The Theoretical Domains Framework was used to describe the findings relative to wider literature on health provider behavior change. METHODS: A qualitative descriptive approach was used to interview thirteen healthcare providers recruited purposively based on their clinical professions, roles, and settings. Data were analyzed using directed content analysis. We decided on the most prominent theoretical domains considering the frequency of specific perceptions and behaviors across the participants, the frequency of perceptions and behaviors in each domain, and evidence of strong perceptions and behaviors. RESULTS: Nine out of fourteen theoretical domains were identified. These domains were: Beliefs about consequences, environmental context and resources, goals, knowledge, skills, optimism, reinforcement, social influences, and social or professional role and identity. Healthcare providers' beliefs about their roles in screening for disability or referring to rehabilitation were less positive. CONCLUSIONS: The findings of this study suggest the need for interventions to support healthcare providers in acute phases (prevention and control of severe malaria) and post-acute phases (disability screening, referral, and rehabilitation care). Recommended interventions should focus on developing clinical guidelines, training clinicians, addressing institutional factors, and modifying external social influences such as socio-cultural factors.

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.

Family-centered service through the eyes of insiders: Healthcare providers who are parents speak about receiving and providing healthcare in child health.

BACKGROUND: When healthcare providers (HCPs) become patients, the experience affects their sense of identity, the care they receive, and their clinical practice. In child health, considerably less is known about the experiences of HCP-parents who access the pediatric healthcare system with their own children with disabilities and/or chronic medical conditions. AIMS: This study aimed to examine the experiences of HCPs who have children with disabilities to identify their experiences with healthcare delivery. METHODS AND PROCEDURES: A qualitative descriptive study was conducted with HCP-parents, using focus groups and open-ended interviews. Data were analyzed using reflexive thematic analysis. RESULTS: For HCP-parents, the experience of having a child with a disability affects how they see themselves, their patients, service organizations, and the healthcare system in general. Having medical knowledge and access to networks brings both benefits and unique challenges. HCP-parents also have unique needs that are not currently being addressed. The lived experiences of HCP-parents can contribute to improving patient care. However, the value of this lived experience is unrecognized and underutilized. CONCLUSIONS: The lived experiences of HCP-parents can contribute important insights regarding service delivery, and in particular regarding the application of Family-Centered Service.

Mental health of caregivers of children with medical complexity: group-based trajectory modelling.

OBJECTIVE: To describe the mental health trajectories of caregivers of children with medical complexity (CMC) and explore child characteristics associated with below-average caregiver mental health. DESIGN: A secondary analysis of prospectively collected data from 123 caregivers of children aged <16 years with medical complexity from a multicentre randomised trial conducted from December 2016 to June 2021. MAIN OUTCOME MEASURE: The Patient-Reported Outcomes Measurement Information System Global Mental Health Scale was used to measure caregivers' self-reported mental health well-being. Group-based trajectory analysis was used to identify clusters of caregivers with similar changes in mental health across 24 months. Logistic regression was used to identify child-related predictors of mental health among caregivers. RESULTS: A final model with three distinct groups was selected, corresponding to caregivers with average (n=39), moderately below-average (n=65) and severely below-average (n=19) mental health scores, all with stable trajectories and high posterior probabilities (>90%). Moderately and severely below-average caregiver mental health groups, merged into one group, were associated with a greater number of child medical technology devices (adjusted OR (aOR) 1.44, 95% CI 1.01 to 2.04), gross motor difficulties (aOR 3.51, 95% CI 1.02 to 12.05) and worse child emotional (aOR 0.93, 95% CI 0.87 to 0.99) and psychological well-being (aOR 0.93, 95% CI 0.88 to 0.99). CONCLUSION: Most caregivers of CMC reported persistently below-average mental health. The intensity of caregiving, as indicated by medical technology and child functional needs, is a potential risk factor for below-average caregiver mental health. Future design and evaluation of interventions focused on support for caregivers of CMC are warranted.

The shame-blame complex of parents with cognitively disabled children in Italy.

This article aims to advance knowledge related to the concept of the 'shame-blame complex' by analysing the accounts and experiences of parents with cognitively disabled children. It draws on 29 interviews with parents of children with Down syndrome and shadowing sessions with one family, carried out in Italy. Results show how the feeling of shame as a consequence of being associated with a disabled child is turned into blame for bad parenting. The sources of this blaming process are twofold: firstly, neoliberalism has disseminated an intensive parenting model based on the imperative of individual responsibility and risk avoidance. Secondly, ableism acts as a network of processes and beliefs that produce a particular kind of self and body as the perfect and complete human being. Participants have been held responsible for their children's condition because they avoided prenatal screening or continued a pregnancy after receiving a positive result. Consequently, parents' moral culpability for their children's diversity and their social marginalisation were enhanced. Although the interviewees resist the shame of being associated with a cognitively disabled child and the blame for bad parenting, they seem unable to escape from the grips of the shame-blame complex. The latter has structural and cultural underpinnings. In an age of 'neoliberal-ableism', this complex is indeed a powerful weapon to erode the rights of families with cognitively disabled members.