Creating Family-Centred Support for Children with Developmental Disabilities in Africa: Examples of Local Community Interventions.

Preschoolers with disabilities and their family caregivers are overlooked by many public health initiatives, especially in low-income countries. Yet they can benefit from early intervention to promote their development soon after birth and to provide a better quality of life for their families. In this paper, we describe how a community-based approach has been implemented with minimal funding in two areas in Zimbabwe: a township in Harare and in rural areas of Manicaland Province. Our aim in sharing this information-allied with references to research studies recently undertaken in Africa-is that it will enable similar support to be replicated in other communities by local personnel. A logic model is used to describe the situation in which the two projects work, the various inputs they have provided to their community, and the different forms of support they have offered to the children and their caregivers. The project outputs are listed in terms of the number of beneficiaries helped and the activities undertaken. The outcomes achieved for the children, families, and communities are reported. The sustainability and extensions of community-based projects to address unmet needs are discussed. The main conclusion is that disadvantaged communities can be energised to address the needs of their most marginalised residents.

Creating Family-Centred Support for Preschoolers with Developmental Disabilities in Low-Income Countries: A Rapid Review to Guide Practitioners.

Preschoolers with disabilities and their caregivers have been neglected in health and social service provision in most low-income countries and arguably also in low-resourced areas of more affluent nations. Yet as this rapid review of the published literature identifies, there are low-cost, evidence-based strategies to address their needs that can be implemented in communities by local people. Five key features of the necessary supports are examined. First, the leadership functions required to create and implement the support services. Second, the family-centred, home-based support provided to caregivers and the personnel undertaking this form of support. Third, providing opportunities for peer support to flourish and encouraging the formation of advocacy groups across families. Fourth, mobilizing the support of significant groups within the community: notably, traditional healers and leaders, health services and poverty alleviation initiatives. Fifth, devising ways in which preschool educational opportunities can be offered to children as a prelude to their inclusion in primary schools. The review serves a further purpose. It provides an example of how public health researchers and academics could achieve more rapid implementation of evidence-based knowledge into existing and new support services through dissemination to community practitioners.

Nurturing the Positive Mental Health of Autistic Children, Adolescents and Adults alongside That of Their Family Care-Givers: A Review of Reviews.

The rising prevalence of autism internationally has been accompanied by an increased appreciation of the poorer mental health experienced by people with this condition and also of their family care-givers. In particular, higher incidences of anxiety and depression are reported in high-income nations and these conditions are likely to be under-recognised and under-reported in lower-resourced regions or countries. Mainstream mental health services seem to be ill-equipped to respond adequately to the needs of autistic persons and their care-givers. This literature review of 29 recently published reviews covering nearly 1000 journal articles summarises the insights and strategies that have been shown to promote the mental health and emotional wellbeing of autistic persons. In particular, a focus on family-centred, community-based supports is recommended that aim to enhance social communication, extend social connections and promote an individual's self-esteem, self-determination and social motivation. These low-cost interventions are especially pertinent in low-resourced settings, but they can be used internationally to prevent mental illness and assist in the treatment of anxiety and depression in autistic persons and their family carers. The priority is to focus on primary-care responses with cross-sectoral working rather than investing in high-cost psychiatric provision.

Parental Perceptions of Family-Centred Supports for Children with Developmental Disabilities.

Family-centred interventions have long been advocated in paediatric practice and in public health, but their implementation is rarer with children experiencing developmental disabilities. Moreover, the uptake is lower in families from more socially deprived backgrounds. Yet there is robust evidence that such interventions bring benefits to the family caregivers as well as to the affected children. The present study emerged from a support service that had been located in a rural county in Ireland in which nearly 100 families of children with intellectual and developmental disabilities had participated. Using a qualitative research methodology, interviews were conducted with 16 parents who had taken part in the service with the aim of gaining insights into the ways a family-centred service had been of value to them. The themes identified in their responses were validated in two ways. All parents were given the opportunity to provide their perceptions using a self-completion questionnaire, and nearly 50% responded. In addition, seven health and social care staff who had referred families to the project were asked their views through personal interviews. The core theme to emerge was the focus placed on family engagement by the service, with four subthemes emerging: parental confidence boosted; children developed; community connections were made; and supportive staff. These insights should help existing health and social care services to become more family-centred and inform the development of new support services in response to the high levels of unmet needs among marginalized families in even the most affluent countries.

The Impact of a Family-Centred Intervention for Parents of Children with Developmental Disabilities: A Model Project in Rural Ireland.

The greater risk of poor mental health and social isolation, experienced by parents of children with developmental disabilities, is compounded by family circumstances and living in rural settings. Often parents receive little personal support. Family-centred interventions have been recommended internationally for promoting children's development, as well as boosting parental wellbeing. Yet, in many countries, current service provision is predominately child-focused and clinic-centred. An innovative, family-centred support service was designed and evaluated in a rural county of Ireland. Support staff visit the family home every month for around one year with regular check-ins by phone. The service aims included setting developmental goals for the child that were agreed with parents, alongside actions to address the personal needs of parents and siblings. In addition, community activities are identified or created to promote the social inclusion of the child and family in local communities, as well as locating opportunities for social activities for mothers. To date, 96 families with 110 children have been involved and three monthly reviews have been undertaken of each child's progress. Baseline measures on parents' mental health and social isolation were gathered and repeated when parents had completed their involvement with the project, along with qualitative information regarding the parents' experiences. Most children attained their learning targets, alongside those selected as personal goals by parents; in particular, parents reported their child's greater involvement in community activities, increased knowledge and skills, and with more confidence and resilience. Significant increases in parental well-being scores were reported, but there was a limited impact on their social participation and that of their child. This evidence-based model of provision is an example of how current social care provision for families who have a child with developmental disabilities could be cost-effectively re-envisioned even in rural areas.

Responding to Autism in Low and Middle Income Countries (LMIC): What to Do and What Not to Do.

Autism is a spectrum disorder that occurs globally with increasing numbers of children and adults being identified with this condition. Although rates are higher in more affluent nations, the bulk of people with autism reside in Low and Middle Income Countries (LMICs). However, most do not have access to timely and appropriate support. The types of services delivered in high income countries are often ill-suited to the needs and resources of LMICs. Rather alternative forms of provision need to be devised. In common with other public health initiatives, these should be family-focused and community based, with suitably qualified and experienced leaders who in turn train and supervise a cadre of knowledgeable support workers drawn from local communities and cultures. As well as providing personalized, home-based guidance to people with autism and to their primary carers, regular group-based advocacy and training activities are undertaken in partnership with available mainstream services such as schools and social services. The principles and operations of these new forms of services are described in this paper albeit with an acknowledgment of their limitations. In recent decades, the cost-effectiveness of these approaches have been demonstrated with other chronic illnesses and disabling conditions in LMICs but their extension to autism has barely begun. More affluent countries are being forced to adopt similar strategies in response to the increased numbers of people identified with autism. A transformation in research strategies is essential to building better international support for persons with autism.

Screening Children for Autism Spectrum Disorders in Low- and Middle-Income Countries: Experiences from the Kurdistan Region of Iraq.

Screening tools for the early identification of developmental disabilities are strongly advised, yet culturally valid tools are not readily available for use in low- and middle-income countries. The present study describes the context and the processes used to develop a suitable screening procedure for use in the Kurdistan region of Iraq. This was based on an autism rating scale-GARS-3-developed in the USA for use primarily with children's parents. It was administered to three groups of children: those with a pre-existing diagnosis of ASD; those with a confirmed diagnosis of a developmental disability; and those who were typically developing-735 participants in all. The 10 items from the 58 items in the full GARS-3 scale that best discriminated the three groups of children were identified. Subsequent analysis confirmed that the ten-item summary scores had reasonable internal reliabilities, with a good specificity and sensitivity in distinguishing children with ASD from those that were typically developing but less so for children with other developmental disabilities. The study confirms the universality of autism symptoms but also the different emphasis Kurdish parents may place on them. Nevertheless, screening procedures need to be developed in the context of support services that can undertake follow-up diagnostic assessments and provide suitable interventions for use by parents to promote their child's development. The study provides an example of how this can be possible in low- and middle-income countries.

The Psychometric Properties of the Gilliam Autism Rating Scale (GARS-3) with Kurdish Samples of Children with Developmental Disabilities.

There is marked variation internationally in the prevalence of children identified as having autism spectrum disorders (ASD). In part, this may reflect a shortage of screening tools for the early identification of children with ASD in many countries. This study aimed to evaluate the Kurdish translation of the Gilliam autism rating scale-third edition (GARS-3), a scale commonly used in Western countries that evaluates six domains related to the ASD definition from the Diagnostic and Statistical Manual of Mental Disorders (DSM) 5, notably Restricted/Repetitive Behavior, deficits in Social interaction and Social Communication, as well as differences in Cognitive Style, Maladaptive Speech, and Emotional Response. GARS-3 assessments were completed through interviews with parents of 735 children, 442 (53%) of whom were diagnosed with ASD. 165 (22%) with an intellectual disability, 49 (7%) with communication disorders, and 133 (18%) typically developing children. The reliability, construct, and the predictive validity of the scale was assessed, and the scores suggestive of a child having ASD were identified. The factor structure was broadly replicated, especially on items relating to social interaction and social communication. The cutoffs for the total scores that were indicative of possible ASD had a high degree of specificity and sensitivity in distinguishing children with ASD from typically developing peers. Some children with I.D. and communication disorders may also score above the threshold, and further assessments should be sought to confirm the presence of autistic traits. Although GARS-3 could be recommended for use in Kurdistan and possibly similar cultures, further prospective research is needed to confirm a diagnosis of assessment with children who score above and below the cutoff scores identified in this study. Moreover, the development of normative data drawn from Kurdish samples of children would be advantageous, although ambitious, given the lack of diagnostic services in many low- and middle-income countries.

Predictors of access to healthcare professionals for people with intellectual disability in Ireland.

The Irish National Intellectual Disability Database is updated annually and in 2017 contained records for nearly 22,000 persons aged 15 years and over. Information was extracted on the contacts each person had with one of eight health professionals in the years 2007, 2012 and 2017. Over these years, there was an increase in the number of people in contact with any professional or with four and more professionals. Nevertheless, the people less likely to have contact were those with milder forms of intellectual disability, persons living with family carers or independently and those linked to smaller provider agencies. By contrast, the odds of people with more severe disability in residential settings were up to eight times greater for having contact with four or more different professionals. As demand for healthcare grows due to increased longevity and service models shift to the community, redeployment of existing professional resources will be needed along with a review of the skill mix.

Social-Emotional Difficulties in Irish Children Aged Five and Nine Years: A National, Longitudinal Study.

A small proportion of children experience social-emotional difficulties from early childhood onwards. Longitudinal studies with nationally representative samples are needed to identify the prevalence and the characteristics of children and families persistently experiencing these difficulties. Secondary analysis of data collected on over 7500 Irish children and with the Strengths and Difficulties Questionnaire as the primary indicator, found that 6% of children when they were five year olds and 8% when they were nine-years, had above threshold scores that warranted further investigation. A smaller proportion-2.9% had elevated scores at both ages. Logistic regression analyses found that children with one or more developmental disabilities were up to six times more likely to have sustained difficulties. There were also significant associations with the lower education attainment of primary caregivers and the socio-economic deprivation of families. Primary caregivers and teachers reported higher conflict in their relationships with these children. Although the number of Irish children presenting with continuing social-emotional difficulties is small, they can present an ongoing and future societal cost in terms of the impact on family relations and demands placed on educational, health and social services. This study identified the children and families who are at greatest risk and for whom targeted early intervention services could be provided.

Changes in Children's Speech and Language Difficulties from Age Five to Nine: An Irish National, Longitudinal Study.

In many countries, information on the prevalence of persistent speech and language disorders in early childhood is sparse due to the lack of nationally representative samples and longitudinal studies. Secondary analysis of data collected on over 7500 Irish children at ages 5 and 9 years, found that the prevalence of speech and language difficulties reported by the primary caregivers of Irish children decreased from one in six at age 5 to one in 12 at age 9. However, one in 20 children were reported to have difficulties at both ages. Regression analysis compared children with difficulties at both age 5 and age 9 to those who had been reported to have them at age 5 but no longer had such difficulties at age 9. Children with speech and language difficulties at both age 5 and age 9 were more likely to have two or more developmental impairments as well as current or past hearing impairments. Teachers and parents also reported a greater number of social-emotional difficulties. Family characteristics did not differ significantly across the two groupings. At best, up to one third of the children at ages 5 and 9 with speech and language difficulties had two or more contacts with a speech and language therapists in the preceding 12 month period. Increased support to these children, their parents and teachers would seem to be warranted.

The Development and Initial Validation of a Short, Self-Report Measure on Social Inclusion for People with Intellectual Disabilities-A Transnational Study.

Sport has been promoted as a means of increasing the social inclusion of persons with intellectual disabilities. Suitable tools for evaluating this claim are not readily available. The aim of this study was to develop a self-report tool for use by people with intellectual disabilities regarding the social inclusion they experience in sport and in the community. A three-phase process was used. In the first phase an item bank of questionnaire items was created and field-tested with 111 participants. Initial factor analysis identified 42 items which were further evaluated in Phase 2 with 941 participants from six European countries. Construct validity was established first through Exploratory and then Confirmatory factor analysis. These analyses identified ten items relating to inclusion in sports and ten to inclusion in local communities. A third phase checked the usability and test-retest reliability of the short form with a further 228 participants. In all, 1280 athletes and non-disabled partners were involved from eight countries. This short social inclusion questionnaire has been shown to be a reliable and valid measure for use transnationally. Further psychometric properties remain to be tested; notably its sensitivity to change resulting from interventions aimed at promoting social inclusion.

The Use of Psychotropic Medication in Iranian Children with Developmental Disabilities.

The use of psychotropic medication in children is increasing worldwide. Children with developmental disabilities seem to be prescribed these medications at a higher rate compared to their non-disabled peers. Little is known about prescribing in non-Western, middle-income studies. In Iran, the file records of 1133 children, aged 2 to 17 years, assessed as having autism spectrum disorder (ASD) or an intellectual disability (ID) in Tehran City and Province from 2005 to 2019 were collated, and information from parental reports of medications was extracted. Upwards of 80% of children with ASD and 56% of those with ID were prescribed a psychotropic medication with around one quarter in each group taking two or more medications. The rates were higher among male children showing difficult-to-manage behaviors such as hyperactivity, but less so for children of fathers with higher levels of education. The lack of alternative management strategies may be a significant driver for the use of psychotropic medications in Iran and other Low and Middle Income countries, despite their known side effects, and their failure to address the developmental needs of the children. Rather, multi-disciplinary, behavioral, therapeutic, and educational interventions are required, but these are not available widely in Iran, although a start has been made.

Developmental Signs of Autism Spectrum Disorder in Iranian Pre-Schoolers.

PURPOSE: Early identification and intervention is recommended for developmental disabilities such as autism spectrum disorders (ASD). Various screening tools are available, but most were developed in affluent English speaking countries. DESIGN AND METHODS: In order to identify possible early signs of ASD within Iranian society, parents of 623 children in an age range from 3 to 7 years of age at risk of ASD, were interviewed about the signs that alerted their concerns. Also two screening instruments were developed and tested with the parents using items derived from the Gilliam Autism Rating Scale (GARS2). One focused on autistic behaviors and the second on developmental indicators. RESULTS: Using both tools, 93% of the children who were identified as likely to have ASD based on a full GARS assessment were identified using the two screening tools. PRACTICE IMPLICATIONS: These assessments might be used in initial screening for ASD by early year's personnel or public health professionals with Iranian parents of toddlers who have concerns about their child's development.

People with intellectual disability in Ireland are still dying young.

BACKGROUND: People with intellectual disability die younger than their non-disabled peers. In recent years, greater attention has been paid to closing the gap. However, evidence that this is being achieved is limited by the dearth of longitudinal, national data. METHOD: Over 4,000 decedents identified in the Irish National Intellectual Disability Database from 2001 to 2016 were compared to deaths in the general population based on age and gender profiles using death rates and standardised mortality ratios. A binary logistic regression analysis also identified the characteristics of persons who had a higher risk of dying. RESULTS: Irish people with intellectual disability die younger and have a higher rate of death than their non-disabled peers. Nor has the gap between their mortality and that of the general population closed in recent years. CONCLUSIONS: More concentrated effort is needed in Ireland on promoting equitable access to health services for people with intellectual disability.

Family carers of people with intellectual disabilities in Ireland: Changes over 10 years.

Data were obtained on nearly 20,000 Irish children and adults living in various family care arrangements in 2007, 2012, and 2017. Over 10 years, the percentage increase in adult persons living with family carers was three times higher than the rise in the general population, with people aged 50 years and over having the highest proportional increase. Also a greater number of persons aged 40-49 group continued to live with both parents in 2017 (47%) compared to 2007 (33%). However, there was marked variation across the nine Community Health Organization areas in the proportions of adults living with family carers (from 49% to 62%). In the coming decades, increased provision will be required in both the quantum and type of supports provided to families so as to sustain their caring role but ensuring equity of provision nationally will be a major challenge.

Family experiences of personalised accommodation and support for people with intellectual disability.

Previous studies suggest that family members of people with intellectual disabilities prefer them to move to supervised living arrangements such as group homes. In Ireland, personalised arrangements are emerging, but families have had little exposure to this option. In this qualitative study, we explored the perspectives of family members following their relative's move to personalised support options, mostly from group homes. Semi-structured interviews were conducted in 2011 with a family member of 17 people who had previously moved, with follow-up interviews held with 12 of them up to 18 months later. Thematic analysis on interview transcripts was conducted by three researchers. The family members spoke favourably of the new arrangements. A core theme of enabled independence emerged with subthemes of greater self-reliance in personal care, increased confidence, more social inclusion and gains for relatives. Reservations focussed on the need for more support hours, managing risk and loneliness.

Identifying children with autism spectrum disorders in Iran using the Autism Diagnostic Interview-Revised.

LAY ABSTRACT: The diagnosis of autism spectrum disorder is a challenging task. Most of the current assessment scales have been developed in the West. The present study examines the applicability of one of the most used scales (the Autism Diagnostic Interview-Revised) in a Middle-Eastern culture. Two studies were undertaken. In the first, the Autism Diagnostic Interview-Revised ratings given to 420 children with autism spectrum disorder, aged 4-11 years, and 110 typically developing children were contrasted. In Study 2, the Autism Diagnostic Interview-Revised ratings of 720 children with autism spectrum disorder were compared with those of 172 children with intellectual disabilities to find out whether the Autism Diagnostic Interview-Revised scale would discriminate between these two types of developmental disabilities. The studies confirmed the acceptability of the scale to Iranian parents and assessors. However, the summary scores used to determine whether a child was likely to have autism spectrum disorder were recalculated on the two domains of social communication and repetitive behaviours, which were identified in the statistical analyses that are recommended for the evaluation of assessment scales. Thus the translated scale with the modified domain scoring proved very suitable for identifying Iranian children with autism spectrum disorder. Having a common tool such as Autism Diagnostic Interview-Revised will strengthen the opportunities to undertake cross-cultural research into the impact of autism spectrum disorder on the child and families.

Perceptions of the rights and capabilities of people with intellectual disability in the United States.

BACKGROUND: The United States has yet to ratify the UN Convention on the Rights of Persons with Disabilities. The extent of public support in the United States for the rights of persons with intellectual disability is not known. METHODS: Online public opinion polls were conducted nationally and in eight selected cities in 2017 and repeated in 2018 with 26,876 respondents in total. RESULTS: Support for rights was high: notably in accessing healthcare, schooling, playing sports and getting married. However, less support was evident for the rights of people who were perceived as less capable. Respondents with prior frequent personal contact and who had an engagement with Special Olympics were those most likely to support the rights and capabilities of persons with intellectual disability. CONCLUSIONS: Public support for the ratification of the UN Convention seems likely. Further longitudinal research could identify successful strategies for implementing the rights of disabled persons locally and nationally.

Using Hybrid Telepractice for Supporting Parents of Children with ASD during the COVID-19 Lockdown: A Feasibility Study in Iran.

During the three-month closure of clinics and day centers in Iran due to the coronavirus disease 2019 (COVID-19) lockdown, parents of children with Autism Spectrum Disorder (ASD) became solely responsible for their care and education. Although centers maintained telephone contact, it quickly became evident that parents needed more detailed advice and guidance. Staff from 30 daycare centers volunteered to take part in a two-month online support and training course for 336 caregivers of children with ASD of different ages. In addition to the provision of visual and written information, synchronous video sessions were used to coach parents on the learning goals devised for the children. Both qualitative and quantitative data were collected to understand the acceptability of using telepractice and the outcomes achieved. A low dropout rate and positive feedback from parents indicated that they perceived telepractice sessions to be useful. The factors contributing to parents' satisfaction were identified. Although the use of telepractice would be a good alternative for caregivers in any future lockdowns, it could also be used in conjunction with daycare center services to encourage greater parental participation, or with families living in areas with no day centers. Further studies are needed to compare telepractice to usual daycare face-to-face interventions, and to document its impact and cost-effectiveness for parents and children.