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1.
S Afr J Psychiatr ; 30: 2160, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38726329

RESUMO

Background: Despite a massive global increase in research on gender-diverse youth, there have been no studies in Africa on gender-diverse children and adolescents presenting to health services. Aim: This study aimed to present the first African findings of the demographic and mental health profile of youth who have presented at a gender service in South Africa. Setting: A specialist mental health outpatient service, consisting of psychiatry, psychology and nursing input, for gender-diverse child and adolescent patients in the Western Cape. Methods: All consenting youth seen at a gender service, consisting of psychiatry, psychology and nursing input, in state and by the same clinician in private practice between January 2012 and May 2019 were participants of a retrospective, sequential case series study. Data of interest, including gender identity and sexuality, mental health history and social information, were extracted from the psychiatry files of participants. Results: Thirty-nine participants were part of the registry and qualified for the study: 72% self-identified as white, 15% as coloured and 13% as black African. The rate of co-occurring psychopathology was high (64%) and included high rates of autism, particularly in trans males (26%), suicidal ideation in 31% and a history of suicide attempt(s) in 10%. Conclusions: This first study describing gender-diverse youth seeking support relating to their gender identity in Africa showed they had remarkable similarities to those studied internationally. Contribution: Establishing that transgender youth of all major racial groups in the province with similar demographic profiles to other parts of the world are presenting to services in South Africa and in need of mental health support and interventions.

2.
Child Adolesc Ment Health ; 29(2): 194-196, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38634297

RESUMO

Children and adolescents around the globe have mental health and neurodevelopmental needs. However, no country or region of the world has found good solutions to meet these needs, which are often long-term and complex. Most child and adolescent mental health research comes from high-income, mostly English-speaking, contexts even though 95% of the world's children and adolescents live in low- and middle-income countries (LMIC), where there is vast cultural, linguistic, and socio-economic diversity, with limited services and systems for child and adolescent mental health (CAMH). There is therefore both a 'knowledge gap' (more than 90% of all research represents less than 10% of the global population) and an 'identification and treatment gap' (fewer than 1 in 10 children in LMIC ever receive a diagnosis or any kind of treatment). The purpose of this editorial perspective was to consider the challenges of diversity, inclusion and equity in CAMH research around the globe, and to present some practical things we can all do to close these gaps and transform the global CAMH research agenda.


Assuntos
Serviços de Saúde Mental , Saúde Mental , Criança , Humanos , Adolescente , Renda , Conhecimento , Linguística
3.
Child Adolesc Ment Health ; 29(2): 145-153, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38533770

RESUMO

INTRODUCTION: Caregivers of children with autism face significant challenges in navigating health, education and other systems of care to ensure appropriate services for their children. In South Africa, for example, many children with autism are reported to be out of schools and waiting long periods for specialist school placements thus adding to the burden of care for caregivers and raising many questions about equity, diversity and inclusion. METHODS: Here we performed a qualitative study using focus groups to collect data on the perspectives of caregivers of children with autism waiting for school placement in the Western Cape Province of South Africa. We asked families about their experiences of current autism services and for suggestions to improve service delivery. RESULTS: The main theme that emerged was 'We wait and we wait'. Caregivers expressed high levels of frustration with existing autism educational and other services. Perspectives about services were captured under three categories. The first category, 'The costs of waiting' describes the socioemotional, financial and time costs associated with having a child with autism wait for educational services. The second category 'Barriers while waiting' describes the attitudinal, structural, process and communication barriers experienced by caregivers while seeking services for their children. The final category 'Expecting action' describes attitudinal, service and policy expectations that caregivers felt could improve service delivery. Caregivers provided 10 recommendations for autism service improvements. CONCLUSION: Caregivers of children with autism waiting for educational services in the Western Cape Province of South Africa expressed dissatisfaction with existing services. Efforts to find solutions to providing services and support to children with autism waiting for educational services and their caregivers should be prioritized.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Criança , Humanos , Cuidadores/psicologia , Transtorno do Espectro Autista/psicologia , África do Sul , Grupos Focais
4.
Child Adolesc Psychiatry Ment Health ; 18(1): 21, 2024 Feb 03.
Artigo em Inglês | MEDLINE | ID: mdl-38310302

RESUMO

BACKGROUND: Sudan is a Northeast African country, with 61.7% of its population under 24 years. With a large youth population and significant cultural and linguistic diversity, Sudan, like most low-income countries, has contributed minimal data to global child and adolescent mental health (CAMH) research. This study aimed to perform the first ever situational analysis of CAMH services and systems in Khartoum State, Sudan. METHODS: The study focused on Khartoum state and covered the calendar years 2019 and 2020. Using the World Health Organization Assessment Instrument for Mental Health Systems (WHO-AIMS) version 2.2 adapted for CAMH, the study focused on the publically available data sources. Findings were described and presented in tables and figures using the WHO-AIMS template. RESULTS: The situational analysis found no CAMH-specific policies, no separate budget for CAMH, and no supervising body for CAMH services in Khartoum. Three tertiary mental health hospitals provided CAMH services, all combined with adult mental health services. Essential medicines were available in all facilities, except methylphenidate available only in 3 central pharmacies. There was no free access to essential psychotropic drugs for children and adolescents except in emergency settings. Data about training to primary healthcare providers and the process of referral to specialized services were limited. A school mental health programme existed which provided early identification and management of CAMH problems in schools. The workforce was small and variable across all levels of care. No formal public health awareness campaigns and little evidence of formal intersectoral collaboration on CAMH were identified. A health information system existed, but no CAMH-specific items were reported. Among a handful of publications on CAMH, no national studies on CAMH were identified. CONCLUSIONS: This situational analysis represented the first systematic collation of data and information about CAMH in Sudan. Findings highlighted some areas of strength, but also many gaps in CAMH services and systems. We acknowledge the need to complement the desktop analysis with in-depth data collection with stakeholders across multiple levels, but hope that this will serve as a first step towards strengthening CAMH services in Sudan and other low-income countries.

5.
Autism ; : 13623613231223784, 2024 Feb 08.
Artigo em Inglês | MEDLINE | ID: mdl-38332664

RESUMO

LAY ABSTRACT: In low-resource settings, non-profit organisations play an essential role in providing services and support for families with young children with autism, including in Africa. However, non-profit organisation service providers may not have access to quality training in proven intervention methods. Web-based or online courses may help to meet this need. In this study, we invited a group of specialist (10) and non-specialist (16) non-profit organisation providers in South Africa to complete a web-based course, Autism Navigator® JumpStart to Coaching in Everyday Activities, a 20-h self-paced course that provides training in an evidence-based parent coaching intervention called Early Social Interaction. We evaluated acceptability, appropriateness, and feasibility of the training. Of the 26 who enrolled, 16 completed the course (7 specialists and 9 non-specialists). All providers found it difficult to find time to do the course until the lockdown restrictions due to COVID-19, when most completed the course. Those whose first language was not English experienced more difficulties with two of six learner assessments and those who were not clinical specialists had more difficulty with the coaching strategies learner assessment. Most providers rated the course highly feasible, acceptable, and appropriate stating that the course content was very valuable and helpful in equipping them to serve their families. They felt the extensive video clips and regular meetings with a local trainer helped them engage with and understand the material. They suggested that including South African video clips would make the course more relatable. The fact that the course was web-based was identified as a strong benefit, especially during COVID-19 restrictions.

6.
PLoS One ; 19(1): e0291883, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38215154

RESUMO

BACKGROUND: While early autism intervention can significantly improve outcomes, gaps in implementation exist globally. These gaps are clearest in Africa, where forty percent of the world's children will live by 2050. Task-sharing early intervention to non-specialists is a key implementation strategy, given the lack of specialists in Africa. Naturalistic Developmental Behavioral Interventions (NDBI) are a class of early autism intervention that can be delivered by caregivers. As a foundational step to address the early autism intervention gap, we adapted a non-specialist delivered caregiver coaching NDBI for the South African context, and pre-piloted this cascaded task-sharing approach in an existing system of care. OBJECTIVES: First, we will test the effectiveness of the caregiver coaching NDBI compared to usual care. Second, we will describe coaching implementation factors within the Western Cape Department of Education in South Africa. METHODS: This is a type 1 effectiveness-implementation hybrid design; assessor-blinded, group randomized controlled trial. Participants include 150 autistic children (18-72 months) and their caregivers who live in Cape Town, South Africa, and those involved in intervention implementation. Early Childhood Development practitioners, employed by the Department of Education, will deliver 12, one hour, coaching sessions to the intervention group. The control group will receive usual care. Distal co-primary outcomes include the Communication Domain Standard Score (Vineland Adaptive Behavior Scales, Third Edition) and the Language and Communication Developmental Quotient (Griffiths Scales of Child Development, Third Edition). Proximal secondary outcome include caregiver strategies measured by the sum of five items from the Joint Engagement Rating Inventory. We will describe key implementation determinants. RESULTS: Participant enrolment started in April 2023. Estimated primary completion date is March 2027. CONCLUSION: The ACACIA trial will determine whether a cascaded task-sharing intervention delivered in an educational setting leads to meaningful improvements in communication abilities of autistic children, and identify implementation barriers and facilitators. TRIAL REGISTRATION: NCT05551728 in Clinical Trial Registry (https://clinicaltrials.gov).


Assuntos
Acacia , Transtorno Autístico , Tutoria , Criança , Pré-Escolar , Humanos , Transtorno Autístico/terapia , Cuidadores/educação , Ensaios Clínicos Controlados Aleatórios como Assunto , África do Sul , Lactente
7.
Autism ; 28(1): 95-106, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37194191

RESUMO

LAY ABSTRACT: Children with developmental disabilities including autism who live in low- and middle-income countries have very limited access to care and intervention. The World Health Organization initiated the caregiver skills training programme to support families with children with developmental disabilities. In Ethiopia, contextual factors such as poverty, low literacy and stigma may affect the success of the programme. In this study, we aimed to find out if the caregiver skills training programme is feasible to deliver in rural Ethiopia and acceptable to caregivers and programme facilitators. We trained non-specialist providers to facilitate the programme. Caregivers and non-specialist facilitators were asked about their experiences in interviews and group discussions. Caregivers found the programme relevant to their lives and reported benefits of participation. Facilitators highlighted the skills they had acquired but also emphasised the importance of support from supervisors during the programme. They described that some caregiver skills training programme topics were difficult to teach caregivers. In particular, the idea of play between caregiver and child was unfamiliar to many caregivers. Lack of available toys made it difficult to practise some of the caregiver skills training programme exercises. Participants indicated that the home visits and group training programme components of the caregiver skills training were acceptable and feasible, but there were some practical barriers, such as transportation issues and lack of time for homework practice. These findings may have importance to non-specialist delivery of the caregiver skills training programme in other low-income countries.


Assuntos
Transtorno do Espectro Autista , Cuidadores , Criança , Humanos , Cuidadores/educação , Etiópia , Estudos de Viabilidade , Deficiências do Desenvolvimento , Organização Mundial da Saúde
9.
medRxiv ; 2023 Sep 11.
Artigo em Inglês | MEDLINE | ID: mdl-37745535

RESUMO

Background: While early autism intervention can significantly improve outcomes, gaps in implementation exist globally. These gaps are clearest in Africa, where forty percent of the world's children will live by 2050. Task-sharing early intervention to non-specialists is a key implementation strategy, given the lack of specialists in Africa. Naturalistic Developmental Behavioral Interventions (NDBI) are a class of early autism intervention that can be delivered by caregivers. As a foundational step to address the early autism intervention gap, we adapted a non-specialist delivered caregiver coaching NDBI for the South African context, and pre-piloted this cascaded task-sharing approach in an existing system of care. Objectives: First, we will test the effectiveness of the caregiver coaching NDBI compared to usual care. Second, we will describe coaching implementation factors within the Western Cape Department of Education in South Africa. Methods: This is a type 1 effectiveness-implementation hybrid design; assessor-blinded, group randomized controlled trial. Participants include 150 autistic children (18-72 months) and their caregivers who live in Cape Town, South Africa, and those involved in intervention implementation. Early Childhood Development practitioners, employed by the Department of Education, will deliver 12, one hour, coaching sessions to the intervention group. The control group will receive usual care. Distal co-primary outcomes include the Communication Domain Standard Score (Vineland Adaptive Behavior Scales, Third Edition) and the Language and Communication Developmental Quotient (Griffiths Scales of Child Development, Third Edition). Proximal secondary outcome include caregiver strategies measured by the sum of five items from the Joint Engagement Rating Inventory. We will describe key implementation determinants. Results: Participant enrolment started in April 2023. Estimated primary completion date is March 2027. Conclusion: The ACACIA trial will determine whether a cascaded task-sharing intervention delivered in an educational setting leads to meaningful improvements in communication abilities of autistic children, and identify implementation barriers and facilitators.

10.
J Neurodev Disord ; 15(1): 32, 2023 09 14.
Artigo em Inglês | MEDLINE | ID: mdl-37710171

RESUMO

BACKGROUND: Tuberous sclerosis complex (TSC) is associated with a wide range of physical manifestations for which international clinical recommendations for diagnosis and management have been established. TSC is, however, also associated with a wide range of TSC-Associated Neuropsychiatric Disorders (TAND) that are typically under-identified and under-treated yet associated with a profound burden of disease. The contemporary evidence base for the identification and treatment of TAND is much more limited and, to date, consensus recommendations for the diagnosis and management of TAND have also been limited and non-specific. METHODS: The TANDem project was launched with an international, interdisciplinary, and participatory consortium of 24 individuals, including TSC family representatives, from all World Health Organization (WHO) regions but one. One of the aims of the TANDem project was to generate consensus recommendations for the identification and treatment of TAND. At the time of this project, no internationally adopted standard methodology and methodological checklists existed for the generation of clinical practice recommendations. We therefore developed our own systematic procedure for evidence review and consensus-building to generate evidence-informed consensus recommendations of relevance to the global TSC community. RESULTS: At the heart of the consensus recommendations are ten core principles surrounded by cluster-specific recommendations for each of the seven natural TAND clusters identified in the literature (autism-like, dysregulated behavior, eat/sleep, mood/anxiety, neuropsychological, overactive/impulsive, and scholastic) and a set of wraparound psychosocial cluster recommendations. The overarching recommendation is to "screen" for TAND at least annually, to "act" using appropriate next steps for evaluation and treatment, and to "repeat" the process to ensure early identification and early intervention with the most appropriate biological, psychological, and social evidence-informed approaches to support individuals with TSC and their families. CONCLUSIONS: The consensus recommendations should provide a systematic framework to approach the identification and treatment of TAND for health, educational, social care teams and families who live with TSC. To ensure global dissemination and implementation of these recommendations, partnerships with the international TSC community will be important. One of these steps will include the generation of a "TAND toolkit" of "what to seek" and "what to do" when difficulties are identified in TAND clusters.


Assuntos
Transtorno Autístico , Esclerose Tuberosa , Humanos , Afeto , Ansiedade , Consenso , Esclerose Tuberosa/complicações , Esclerose Tuberosa/diagnóstico , Esclerose Tuberosa/terapia
11.
Child Adolesc Psychiatry Ment Health ; 17(1): 103, 2023 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-37660076

RESUMO

BACKGROUND: Research regarding the outcomes of child and adolescent psychiatric inpatients appears insufficient and neglected. Where data are available, the majority of studies focus on adolescents. This study aimed (a) to describe child and parental perspectives of short-, medium- and long-term outcomes of children who have had a pre-adolescent inpatient psychiatric admission, and (b) to analyse these dyadic experiential data to identify outcome variables of importance to families and service users that could be used in future outcomes-based research. METHODS: The study employed a qualitative methodology, using semi-structured in-depth interviews of ten parent-child dyads to (a) collect the perspectives of children who have had an inpatient psychiatric admission at a pre-adolescent unit and their parents, and (b) to analyse the experiences of inpatient admission and perceived outcomes after discharge using thematic analysis. RESULTS: Overall, inpatient psychiatric admission was viewed as a positive and empowering experience by parents and children. Clear short-term benefits were reported as a result of new diagnoses, medications and new skills gained through the admission process. More than half of parent-child dyads reported long-term benefits, but many families commented on ongoing challenges. Thematic analysis identified diagnostic certainty, acquisition of cognitive and behavioural skills, appropriate educational environment, peer relationships, sustained follow-up and medication management, and parent-child relationships, as important contributors to outcomes. Importantly, the presence or lack of these elements influenced outcomes. CONCLUSIONS: The study explored parent-child dyadic perspectives about their experiences of inpatient mental health admissions for pre-adolescents and perceived outcomes after admission. The majority of families found inpatient admission positive and helpful, and thematic analysis identified a number of functional variables that may predict outcome. However, positive outcomes were associated with ongoing difficulties over time, as indicated by the theme "a turn in the road, but still a rough journey".

12.
BMC Med ; 21(1): 298, 2023 08 08.
Artigo em Inglês | MEDLINE | ID: mdl-37553648

RESUMO

BACKGROUND: Tuberous sclerosis complex (TSC) is a rare and complex genetic disorder, associated with tumor growth in various organ systems, epilepsy, and a range of neuropsychiatric manifestations including intellectual disability. With improving patient-centered care and targeted therapies, patient-reported outcome measures (PROMs) are needed to measure the impact of TSC manifestations on daily functioning. The aim of this study was to develop a TSC-specific PROM for adults that captures the impact of TSC on physical functions, mental functions, activity and participation, and the social support individuals with TSC receive, called the TSC-PROM. METHODS: COSMIN methodology was used to develop a self-reported and proxy-reported version. Development and validation consisted of the following studies: PROM development, content validity, structural validity, internal consistency, and construct validity. The International Classification of Functioning and Disability was used as a framework. Content validity was examined by a multidisciplinary expert group and cognitive interview study. Structural and construct validity, and internal consistency were examined in a large cohort, using confirmatory factor analysis, hypotheses testing, and Cronbach's alpha. RESULTS: The study resulted in an 82-item self version and 75-item proxy version of the TSC-PROM with four subscales (physical functions 18 and 19 items, mental functions 37 and 28 items, activities and participation 13 and 14 items, social support 13 items, for self version and proxy version respectively). Sufficient results were found for structural validity with sufficient unidimensionality for each subscale. With regard to construct validity, 82% of the hypotheses were met for the self version and 59% for the proxy version. The PROM showed good internal consistency (Cronbach's alpha 0.78-0.97). CONCLUSIONS: We developed a PROM for adults with TSC, named TSC-PROM, showing sufficient evidence for reliability and validity that can be used in clinical and research settings to systematically gain insight into their experiences. It is the first PROM in TSC that addresses the impact of specific TSC manifestations on functioning, providing a valuable, patient-centered addition to the current clinical outcomes.


Assuntos
Esclerose Tuberosa , Adulto , Humanos , Inquéritos e Questionários , Esclerose Tuberosa/diagnóstico , Esclerose Tuberosa/psicologia , Reprodutibilidade dos Testes , Autorrelato , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida/psicologia
13.
Pediatr Neurol ; 147: 101-123, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37598571

RESUMO

BACKGROUND: Tuberous sclerosis complex-associated neuropsychiatric disorders (TAND) are often present but underidentified and undertreated in individuals with tuberous sclerosis complex (TSC). The clinician-completed TAND-Lifetime Checklist (TAND-L) was developed to address this identification and treatment gap. Stakeholder engagement identified the need for a TAND Checklist that can (1) be completed by caregivers or individuals with TSC and (2) quantify TAND difficulties. The aim of this study was to develop a self-report quantified TAND Checklist (TAND-SQ) and conduct feasibility and acceptability testing. METHODS: This aim was addressed in three phases: (1) development of the TAND-SQ Checklist, (2) feasibility and acceptability testing of the "near-final" TAND-SQ Checklist, and (3) preparation of the final TAND-SQ Checklist. Participants included 23 technical experts from the TAND consortium in all phases and 58 lived experts (caregivers and individuals with TSC) in phase 2. All participants completed a TAND-SQ Checklist and a checklist feedback form. RESULTS: Phase 1 additions to the TAND-SQ, when compared with the TAND-L, included four new items and a quantification rating. Phase 2 showed high ratings for the "near-final" TAND-SQ Checklist on comprehensiveness, clarity, ease of use, and overall acceptability. In phase 3, questions on strengths, strategies, and a TAND Cluster Profile were added. CONCLUSION: The TAND-SQ Checklist is presented here for use by individuals with TSC and their caregivers. The next steps as part of the TANDem project include internal and external validation of the checklist and linking of TAND Cluster Profiles generated from the checklist to evidence-informed consensus recommendations within a smartphone application.


Assuntos
Lista de Checagem , Esclerose Tuberosa , Humanos , Autorrelato , Estudos de Viabilidade , Esclerose Tuberosa/complicações , Consenso
14.
Child Adolesc Psychiatry Ment Health ; 17(1): 64, 2023 May 20.
Artigo em Inglês | MEDLINE | ID: mdl-37210513

RESUMO

BACKGROUND: Despite the high number of children living with neurodevelopmental disabilities in sub-Saharan Africa, access to early intervention is almost non-existent. It is therefore important to develop feasible, scalable early autism intervention that can be integrated into systems of care. While Naturalistic Developmental Behavioural Intervention (NDBI) has emerged as an evidence-based intervention approach, implementation gaps exist globally, and task-sharing approaches may address access gaps. In this South African proof-of-principle pilot study, we set out to answer two questions about a 12-session cascaded task-sharing NDBI-whether the approach could be delivered with fidelity, and whether we could identify signals of change in child and caregiver outcomes. METHODS: We utilized a single-arm pre-post design. Fidelity (non-specialists, caregivers), caregiver outcomes (stress, sense of competence), and child outcomes (developmental, adaptive) were measured at baseline (T1) and follow-up (T2). Ten caregiver-child dyads and four non-specialists participated. Pre-to-post summary statistics were presented alongside individual trajectories. Non-parametric Wilcoxon signed rank test for paired samples was used to compare group medians between T1 and T2. RESULTS: Caregiver implementation fidelity increased in 10/10 participants. Non-specialists demonstrated a significant increase in coaching fidelity (increases in 7/10 dyads). Significant gains were seen on two Griffiths-III subscales (Language/Communication-9/10 improved, Foundations of Learning-10/10 improved) and on the General Developmental Quotient (9/10 improved). Significant gains were also seen on two Vineland Adaptive Behaviour Scales (Third Edition) subscales (Communication-9/10 improved, Socialization-6/10 improved) and in the Adaptive Behaviour Standard Score (9/10 improved). Caregiver sense of competence improved in 7/10 caregivers and caregiver stress in 6/10 caregivers. CONCLUSIONS: This proof-of-principle pilot study of the first cascaded task-sharing NDBI in Sub-Saharan Africa provided fidelity and intervention outcome data which supported the potential of such approaches in low-resource contexts. Larger studies are needed to expand on the evidence-base and answer questions on intervention effectiveness and implementation outcomes.

15.
Autism ; 27(3): 751-761, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-35999698

RESUMO

LAY ABSTRACT: Most of the autism research to date has been conducted in high-income countries, with children and families typically from White, upper-middle-income backgrounds. However, we know there are significant inequalities that exist which influence how autistic individuals from diverse, underserved communities can access services they need. As many of these individuals have not been included in the majority of autism research to date, there is much we do not know about these individuals' life experiences, which are critically needed to better inform the development and implementation of care for families from historically underrepresented groups. In this article, we describe the research process we took to conduct focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. We specifically describe the lessons we learned in implementing these focus groups and provide recommendations aimed at how to best reduce logistical and methodological challenges moving forward to improve research conducted in similar low-resource contexts.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Criança , Humanos , Grupos Focais , Cuidadores , África do Sul
16.
Autism ; : 13623613221142111, 2022 Dec 13.
Artigo em Inglês | MEDLINE | ID: mdl-36510832

RESUMO

LAY ABSTRACT: Autism spectrum disorder is a growing public health concern in low- and middle-income countries like South Africa where there are no plans or policies in place for autism spectrum disorder management. Many children with autism spectrum disorder in South Africa are out of schools and waiting for school placement to become available. This study explored the perspectives of key government stakeholders on educational and other services for children with autism spectrum disorder in the Western Cape Province of South Africa and their suggestion for improving services for these children and their families. Semi-structured interviews were conducted with government stakeholders from the Western Cape Department of Education, Department of Health and the Department of Social development. The main theme that emerged was 'We are doing damage control'. Government stakeholders acknowledged that autism spectrum disorder services were being overlooked because of other demands on government resources. Finding from this study highlighted the need for government departments to work together to develop a strategy for autism spectrum disorder management. Engagement between government and civil society to break down barriers, strengthen systems and develop solutions to improving access to services for children with autism spectrum disorder and their families is recommended.

17.
Autism ; : 13623613221133182, 2022 Nov 09.
Artigo em Inglês | MEDLINE | ID: mdl-36352758

RESUMO

LAY ABSTRACT: Young children with developmental disabilities and delays who live in low- and middle-income countries are at significant risk of not reaching their full potential. We know that daily interactions with their caregivers (parents or other people taking care of them) play an important role in promoting their development. However, having a child with developmental disabilities can have a negative impact on carers' mental health and well-being, which in turn can influence their capacity to care for their children. To date, very little attention has been given to the caregivers' capacity to care. The World Health Organization developed a Caregiver Skills Training programme which includes a brief, three-session module that focuses on improving caregivers' well-being and mental health. This well-being programme is based on acceptance and commitment therapy. Acceptance and commitment therapy shows increasing evidence of helping people respond to their stressors, thoughts, feelings and experiences a little differently and commit to small changes that are in line with their personal values. Acceptance and commitment therapy has shown promise in improving feelings of well-being in caregivers of children with developmental disabilities. We adapted the World Health Organization Caregiver Skills Training Caregiver well-being module to suit the South African context. The resultant 'Well Beans for Caregivers' was then delivered to caregivers from a rural, low-resource setting in South Africa. We found the intervention easy to implement, highly acceptable to caregivers and showed promising impacts on caregivers' well-being and mental health. This intervention has the potential to be implemented widely and sustainably to build caregivers' capacity to care for their children.

18.
Front Psychiatry ; 13: 907093, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35928780

RESUMO

Background: The South African education system is increasingly unable to meet the growing needs of children with autism spectrum disorder (ASD). Recent studies in the Western Cape, one of the better resourced provinces in South Africa, showed that the pathway to care for children with ASD was an inconsistent and lengthy process, and that many children with ASD waited for extended periods to get access to an appropriate school placement. It is therefore clear that scalable and sustainable solutions are required to improve access to appropriate education for children with ASD. Methods: Here we performed a qualitative study using thematic analysis of ten multi-sectorial ASD service provider interviews in the Western Cape Province to examine provider perspectives and proposed solutions to meet the educational needs of children with ASD. Results: Provider perspectives were grouped in three categories: "bridging the gap across the spectrum and lifespan", "gaps to bridge", and "building bridges". The first category captured provider perspectives of the service-related needs inherent to a diagnosis of ASD. The second category summarized service provider views of the challenges associated with providing services to children with ASD and the third category captured provider perspectives on potential actions to improve ASD education services delivery in the province. The overarching theme that emerged was "We're doing the best we can to bridge the gap". Conclusion: Participants provided ten key recommendations for service strengthening that may lead to contextually relevant innovations to meet the educational needs of children with ASD in the province. Findings from this study has direct relevance to other South African provinces and may have relevance to improve pathways and reduce service delivery gaps also in other low-and-middle-income countries.

19.
Child Adolesc Psychiatry Ment Health ; 16(1): 57, 2022 Jul 14.
Artigo em Inglês | MEDLINE | ID: mdl-35836277

RESUMO

BACKGROUND: Current work in the field point to the need to strengthen child and adolescent mental health services (CAMHS) globally, and especially in low- and middle-income countries (LMICs). Policy development, planning and service provision must be relevant to the needs of stakeholders at grassroots level, and should include their perspectives. This study set out to explore the perspectives and lived experiences of service providers, including their recommendations to strengthen CAMHS in South Africa. METHODS: Using focus group discussions (FGDs) and semi-structured individual interviews (SSIIs), qualitative data were collected from 46 purposefully selected multidisciplinary health service providers across the Western Cape, one of the nine provinces of South Africa. Audio-recorded data were entered into NVivo 11 (QSR), and thematic analysis was performed by two independent raters. RESULTS: Results highlighted a significant lack of CAMH resources, poor intersectoral collaboration, limited access to training, absence of consistency and uniformity in service delivery, weak support for staff, and high rates of negative attitudes of staff. External factors contributing to poor CAMHS identified by service providers included poor socioeconomic circumstances, high rates of HIV/AIDS, substance use and stigma. The eight recommendations to strengthen CAMHS included a need to (1) increase CAMH staffing, (2) provide dedicated CAMHS at secondary care and child-friendly infrastructure at primary care, (3) review current service focus on number of patients seen versus quality of care provided to children, (4) formalise intersectoral collaborations, (5) increase learning opportunities for trainees, (6) employ a lead professional for CAMHS in the province, (7) increase support for staff, and (8) acknowledge staff initiatives. CONCLUSIONS: Findings underlined the need for quality improvement, standardisation and scale-up of mental health services for children and adolescents in South Africa. Whilst we used the Western Cape as a 'case study', we propose that our findings may also be relevant to other LMICs. We recommend that the perspectives of service users, including children and adolescents, be sought to inform service transformation.

20.
Artigo em Inglês | MEDLINE | ID: mdl-35457315

RESUMO

There is a large assessment and treatment gap in child and adolescent mental health services, prominently so in low- and middle-income countries, where 90% of the world's children live. There is an urgent need to find evidence-based interventions that can be implemented successfully in these low-resource contexts. This pre-pilot study aimed to explore the barriers and facilitators to implementation as well as overall feasibility of Parent-Child Interaction Therapy (PCIT) in South Africa. A reflective and consensus building workshop was used to gather South African PCIT therapist (N = 4) perspectives on barriers, facilitators, and next steps to implementation in that country. Caregiver participants (N = 7) receiving the intervention in South Africa for the first time were also recruited to gather information on overall feasibility. Facilitators for implementation, including its strong evidence base, manualisation, and training model were described. Barriers relating to sustainability and scalability were highlighted. Largely positive views on acceptability from caregiver participants also indicated the promise of PCIT as an intervention in South Africa. Pilot data on the efficacy of the treatment for participating families are a next step. These initial results are positive, though research on how implementation factors contribute to the longer-term successful dissemination of PCIT in complex, heterogeneous low-resource settings is required.


Assuntos
Serviços de Saúde Mental , Relações Pais-Filho , Adolescente , Estudos de Viabilidade , Humanos , Projetos Piloto , África do Sul
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