Training home visitors in mentalization-based practice: A qualitative case study of clinical supervision in mothering from the inside out.

Attachment-based interventions are important for improving parent-child outcomes. These interventions must be scaled and made available to under-resourced communities. An important part of scaling these interventions is delineating and reproducing high-quality training, including clinical training which often requires the completion of a supervised case. However, descriptions and guidelines for clinical training are frequently broad or not available in the literature. A detailed description of clinical training could lead to further research to improve the effectiveness and dissemination of evidence-based interventions. Mothering from the Inside Out (MIO) is an attachment-based parenting intervention effective at reducing substance use and depression, improving caregiving, and enhancing child attachment. It is now being brought from research to community settings. This paper outlines the didactic and clinical training components of MIO. We then present a qualitative case study of one community-based counselor participating in the clinical training of MIO and employ qualitative methods to describe the main themes that arose during the training. We aim to illustrate how the trainer assisted the counselor in implementing the core components of MIO, which included (a) refining the language used in MIO sessions, (b) making space to explore mental states, and (c) addressing trauma. We conclude by presenting the implications of these findings.

Las intervenciones con base en la afectividad son importantes para mejorar los resultados de relación progenitor-niño. Estas intervenciones deben ser adaptadas y estar disponibles para comunidades sin recursos suficientes. Una parte importante de la adaptación de estas intervenciones es delinear y reproducir el entrenamiento de alta calidad, incluyendo entrenamiento clínico que a menudo requiere completar un caso supervisado. Sin embargo, las descripciones y los parámetros de guía para entrenamiento clínico son frecuentemente generales o no están disponibles en el material escrito. Una detallada descripción del entrenamiento clínico pudiera llevar a una posterior investigación para mejorar la eficacia y diseminación de intervenciones con base en la afectividad. Cuidados Maternales de Adentro Hacia Afuera (MIO) es una intervención de crianza con base en la afectividad que es eficaz para reducir el uso de sustancias y la depresión, mejorar la prestación de cuidado y fortalecer la afectividad del niño. Ahora se le lleva de la investigación a los escenarios comunitarios. Este artículo subraya los componentes de didáctica y entrenamiento clínico de MIO. Presentamos entonces un caso de estudio cualitativo de un consejero con base en la comunidad que participó en el entrenamiento clínico de MIO y empleamos métodos cualitativos para describir los temas principales que surgieron durante el entrenamiento. Nos propusimos ilustrar cómo el entrenador ayudó al consejero a implementar los componentes centrales de MIO, los cuales incluyen (a) refinar el lenguaje usado en la terapia, (b) abrir un espacio para explorar estados mentales, y (c) ocuparse del trauma. Concluimos con la presentación de las implicaciones que conllevan estos resultados.

Les interventions basées sur l'attachement sont importantes quand il s'agit d'améliorer les résultats parent-enfant. Ces interventions doivent être mises à l'échelle et doivent être disponibles pour toutes les communautés ayant peu de moyens. Un côté important de la mise à l'échelle de ces interventions consiste à délinéer et à reproduire une formation de haute qualité, y compris une formation clinique qui souvent exige la réalisation d'un cas supervisé. Cependant les descriptions et les lignes directrices de la formation clinique sont fréquemment larges ou ne sont pas disponibles dans des publications. Une description détaillée de formation Clinique pourrait conduire à des recherches approfondies sur la manière d'améliorer l'efficacité et la dissémination d'interventions fondées sur des données probantes. Le maternage de l'intérieur (abrégé ici MIO pour reprendre l'anglais Mothering from the Inside Out) est une intervention de parentage basée sur l'attachement qui est efficace pour ce qui concerne la réduction de toxicomanie et de dépression, l'amélioration des soins ainsi que de l'attachement de l'enfant. On le fait en ce moment passer des recherches aux contextes communautaires. Cet article décrit les composantes de formation didactique et clinique du MIO. Nous présentons ensuite une étude de cas qualitative d'un thérapeute communautaire participant à une formation clinique du MOI et employons des méthodes qualitatives pour décrire les thèmes principaux qui sont apparus durant la formation. Nous nous donnons pour but d'illustrer la manière dont le formateur a aidé le thérapeute à mettre en place les composantes essentielles du MIO, y compris (a) l'affinage du langage utilisé en thérapie, (b) la nécessité de faire de la place afin d'explorer les états mentaux, et (c) la nécessité d'aborder le trauma. Nous concluons en présentant les implications de ces résultats.

Autism spectrum disorders and epilepsy in children: A commentary on the occurrence of autism in epilepsy; how it can present differently and the challenges associated with diagnosis.

Autism occurs more frequently in epilepsy, but is often not diagnosed. This could be due to a focus on medical issues, or because it presents differently from classic autism in its timing, phenotype, fluctuating profiles, and high level of comorbidity. Without a diagnosis, these children miss out on interventions that could modify outcome and their families and local teams will struggle to understand and support them. They also become a hidden group that does not participate in or benefit from research. This paper examined the issues and challenges of diagnosing autism in a population with a high-risk of epilepsy, drawing on more than 20 years' experience of a specialist multi-disciplinary Developmental Epilepsy Clinic (DEC).

"We don't have up to date knowledge about the disease" Practical challenges encountered in delivery of cervical cancer screening in Iraq.

This qualitative study aimed to explore the lived experience of medical doctors in delivering cervical cancer screening in a city in Iraq. METHODS: An applied grounded theory approach explored the reported experiences of doctors in the field. A purposive sample of 12 gynaecologists and one general practitioner (GP) working in two main hospitals participated: Semi-structured interviews took place from June to September 2015. Thematic coding of data was peer reviewed and included participant reading of transcripts and translations from Arabic to English. Theory generation involved synthesis of a prior literature review and interview findings. RESULTS: Gynaecologist and GP experiences showed overwhelming gaps in cervical cancer experience and screening. Iraqi women mainly presented for help with late-stage cancer. Practical barriers included cultural stigma, low priority for women's health needs, lack of knowledgeable leadership and perceived shortage of adequately trained staff. CONCLUSION: There is an urgent need for culturally appropriate cervical cancer prevention policies and strategies in Iraq, focused on evidence-based population-based cervical screening to identify and prevent advanced cervical cancer among women. Regional educational initiatives should be encouraged and primary healthcare systems supported to undertake screening.

The state of mixed methods research in nursing: A focused mapping review and synthesis.

AIMS: To consider the scope and quality of mixed methods research in nursing. DESIGN: Focused mapping review and synthesis (FMRS). DATA SOURCES: Five purposively selected journals: International Journal of Nursing Studies, Journal of Nursing Scholarship, Journal of Advanced Nursing, Worldviews on Evidence-Based Nursing, and Journal of Mixed Methods Research. REVIEW METHODS: In the target journals, titles and abstracts from papers published between 2015-2018 were searched for the words or derivative words 'mixed methods'. Additional keyword searches were undertaken using each journal's search tool. We included studies that investigated nursing and reported to use a mixed methods approach. Articles that met the inclusion criteria were read in full and information was extracted onto a predetermined pro forma. Findings across journals were then synthesized to illustrate the current state of mixed methods research in nursing. RESULTS: We located 34 articles that reported on mixed methods research, conducted across 18 countries. Articles differed significantly both within and across journals in terms of conformity to a mixed methods approach. We assessed the studies for the quality of their reporting as regard the use of mixed methods. Nineteen studies were rated as satisfactory or good, with 15 rated as poorly described. Primarily, a poor rating was due to the absence of stating an underpinning methodological approach to the study and/or limited detail of a crucial integration phase. CONCLUSIONS: Our FMRS revealed a paucity of published mixed methods research in the journals selected. When they are published, there are limitations in the detail given to the underpinning methodological approach and theoretical explanation.

Older people's early experience of household isolation and social distancing during COVID-19.

AIM AND OBJECTIVE: To explore older people's initial experience of household isolation, social distancing and shielding, and the plans they constructed to support them through the COVID-19 pandemic. BACKGROUND: Public health guidance for those aged 70 or older was predominantly to undertake stringent social distancing within their household. Little is known about older people's experience of these measures. This paper explores changes experienced by those over the age of 70 during the first two weeks of household isolation, social distancing and shielding in the UK and the Republic of Ireland, and their early perceptions and plans to support them through the pandemic. METHODS: An inductive phenomenological study. University staff posted the study invitation flyer on social media, such as WhatsApp neighbourhood groups, the Nextdoor App and Twitter. Qualitative semi-structured interviews were undertaken with 19 participants and repeated at 2-week intervals for 10 weeks; further data collection is still in progress. This paper presents the findings from the baseline interviews, which showed older peoples' early responses. The COREQ (COnsolidated criteria for REporting Qualitative research) checklist was adhered to in the reporting of this study. RESULTS: Three themes emerged from older people's early experiences of social distancing: protective measures; current and future plans; and acceptance of a good life, but still a life to live. CONCLUSION: People over 70 adapted to household isolation, social distancing and shielding, by using social media and neighbourhood resources. Nurses and other professionals can develop holistic care for older people by listening to their experiences of what works for them, helping them link to local and distant supports. Understanding the holistic life view of older people, including death anxiety, is an important element of care planning; to help older people access the protective resources, they need to reduce the serious risks associated with coronavirus. RELEVANCE TO CLINICAL PRACTICE: Older people engage with social media, and during the current pandemic and beyond nurses can engage with this medium to communicate with older people. The importance of nurses to understand some older people consider quality of life to be more important than longevity, which may impact on their adherence to health advice.

How public health nurses' deal with sexting among young people: a qualitative inquiry using the critical incident technique.

BACKGROUND: Globally, the potentially harmful effects of using cell phone technology for 'sexting' among young people, is a public health concern. The background literature indicates that sexting might have adverse psychosocial consequences for some young people who share partially nude images ('selfies'). Public health nurses (PHNs) could offer guidance to children and young people on digital safety, yet little is known about their role in this regard. This study explored PHNs' knowledge and confidence in addressing the issue among young people. METHOD: A qualitative study was undertaken using the Critical Incident Technique. The study took place in 2016. Eighteen semi-structured interviews were conducted with PHNs in a region of England. Data were analysed through thematic analysis, and managed through the use of NViVo 11 software. From the entire data set, thirteen critical incidents were identified of which nine were deemed relevant for reporting in this paper. RESULTS: PHNs regarded sexting as a contemporary 'normalised' practice that takes place in what young people consider to be trusting relationships. PHNs' knowledge was informed by media reports that supported their beliefs about young peoples' vulnerability to risk-taking sexual behaviour. They were not confident about discussing sexting with young people, even though some PHNs had done so in light of concerns about potential child sexual exploitation. CONCLUSION: PHNs have a role to play in advising young people on digital safety, but findings of the study show that their role is not fully realised. They have some knowledge of sexting as a possible signifier of abusive behaviour. However, they are not always confident in dealing with the issue. Improving PHNs ability to promote digital safety through better understanding of technology use among young people is good safeguarding practice. This may, in turn, better define this important nursing contribution to public health.

Current standards of neuropsychological assessment in epilepsy surgery centers across Europe.

We explored the current practice with respect to the neuropsychological assessment of surgical epilepsy patients in European epilepsy centers, with the aim of harmonizing and establishing common standards. Twenty-six epilepsy centers and members of "E-PILEPSY" (a European pilot network of reference centers in refractory epilepsy and epilepsy surgery), were asked to report the status of neuropsychological assessment in adults and children via two different surveys. There was a consensus among these centers regarding the role of neuropsychology in the presurgical workup. Strong agreement was found on indications (localization, epileptic dysfunctions, adverse drugs effects, and postoperative monitoring) and the domains to be evaluated (memory, attention, executive functions, language, visuospatial skills, intelligence, depression, anxiety, and quality of life). Although 186 different tests are in use throughout these European centers, a core group of tests reflecting a moderate level of agreement could be discerned. Variability exists with regard to indications, protocols, and paradigms for the assessment of hemispheric language dominance. For the tests in use, little published evidence of clinical validity in epilepsy was provided. Participants in the survey reported a need for improvement concerning the validity of the tests, tools for the assessment of everyday functioning and accelerated forgetting, national norms, and test co-normalization. Based on the present survey, we documented a consensus regarding the indications and principles of neuropsychological testing. Despite the variety of tests in use, the survey indicated that there may be a core set of tests chosen based on experience, as well as on published evidence. By combining these findings with the results of an ongoing systematic literature review, we aim for a battery that can be recommended for the use across epilepsy surgical centers in Europe.

Abused women's experiences of a primary care identification and referral intervention: a case study analysis.

AIMS: The aim of this study was to report the findings of a qualitative case study that investigated abused women's experiences of an identification and referral intervention and to discuss the implications for nurses, specifically those working in primary and community care. BACKGROUND: Domestic violence and abuse is a significant public health issue globally but it is a hidden problem that is under-reported. In the UK, Identification and Referral to Improve Safety is a primary care-based intervention that has been found to increase referral rates of abused women to support and safety services. This paper reports on the findings of an evaluation study of two sites in England. DESIGN: Qualitative study with a case study design. METHODS: In line with case study design, the entire evaluation study employed multiple data collection methods. We report on the qualitative interviews with women referred through the programme. The aim was to elicit their experiences of the three aspects of the intervention: identification; referral; safety. Data collection took place March 2016. FINDINGS: Ten women took part. Eight had exited the abusive relationship but two remained with the partner who had perpetrated the abuse. Women were overwhelmingly positive about the programme and irrespective of whether they had remained or exited the relationship all reported perceptions of increased safety and improved health. CONCLUSION: Nurses have an important role to play in identifying domestic violence and abuse and in referral and safety planning. As part of a portfolio of domestic violence and abuse interventions, those that empower women to take control of their safety (such as Identification and Referral to Improve Safety) are important.

Development of a practice framework for improving nurses' responses to intimate partner violence.

AIMS AND OBJECTIVES: The aim of this article is to discuss critically the theoretical concepts of awareness, recognition and empowerment as manifested in intimate partner violence and to show how these can be translated into a practice framework for improving nurses' response. BACKGROUND: Intimate partner violence is a universal problem and is considered a significant public health issue. Nurses are in an ideal position to recognise and respond to intimate partner violence, but many lack confidence in this area of practice. In our previous empirical work, we identified three concepts through which nurses' responses to intimate partner violence can be understood: awareness, recognition and empowerment. In this article, we advance nursing knowledge by showing how these concepts can form a practice framework to improve nurses' responses to intimate partner violence. DESIGN: A discussion paper and development of a practice framework to improve nurses' responses to intimate partner violence. DISCUSSION: The framework comprises three principal needs of women and three related key requirements for nurses to meet these needs. Arising from these are a range of practice outcomes: enhanced understanding of intimate partner violence, increased confidence in recognising intimate partner violence, establishment of trusting relationships, increased likelihood of disclosure and optimised safety. CONCLUSIONS: Nurses sometimes lack confidence in recognising and responding to intimate partner violence. Awareness, recognition and empowerment are important concepts that can form the basis of a framework to support them. When nurses feel empowered to respond to intimate partner violence, they can work together with women to optimise their safety. RELEVANCE TO CLINICAL PRACTICE: Access to adequate and timely intimate partner violence education and training is important in improving nurses' responses to intimate partner violence. Getting this right can lead to enhanced safety planning and better health outcomes for women who experience intimate partner violence. Although difficult to measure as an outcome, nurses' improved responses can contribute to higher rates of referral for help and reduction in intimate partner violence rates.

Integrative review of cervical cancer screening in Western Asian and Middle Eastern Arab countries.

Population-based screening programs have resulted in minimizing mortality and morbidity from cervical cancer. The aim of this integrative review was to explore the factors influencing access of women from Western Asian and Middle Eastern Arab countries to cervical cancer screening. A systematic search for studies conducted in Arab countries in those regions, and published in English between January 2002 and January 2017, was undertaken. Thirteen papers were selected and subjected to quality appraisal. A three step analysis was used, which involved a summary of the evidence, analysis of both quantitative and qualitative data, and integration of the results in narrative form. Few population-based cervical cancer screening programs had been implemented in the relevant countries, with low knowledge of, and perceptions about, cervical screening among Arab women, the majority of whom are Muslim. Factors affecting the uptake of cervical cancer screening practices were the absence of organized, systematic programs, low screening knowledge among women, healthcare professionals' attitudes toward screening, pain and embarrassment, stigma, and sociocultural beliefs. Policy changes are urgently needed to promote population-based screening programs. Future research should address the promotion of culturally-sensitive strategies to enable better access of Arab Muslim women to cervical cancer screening.

Critical reflections on early career research development in public health nursing.

Clinical academic careers for nurses, midwives and allied health professionals are gaining recognition internationally and nationally, yet public health nurses appear underrepresented. The purpose of this paper is to share our learning through a clinical-academic partnership. We critique our experiences and in the context of public health nursing, share some of the challenges we experienced. We aim to build on a capability framework for early career research development, applying it specifically to public health nursing. In so doing, we hope to provide insight and motivation for public health nurses seeking to engage with research through clinical academic career opportunities. Our experience shows that the framework can be useful in identifying strengths, but also capabilities that need to be developed. We recognise that uncertainties about public health nursing roles may limit individual wherewithal for continuing professional development. Nonetheless, we recommend public health nurses consider clinical academic careers to advance research in practice.

Outcome following multiple subpial transection in Landau-Kleffner syndrome and related regression.

OBJECTIVE: To determine whether multiple subpial transection in the posterior temporal lobe has an impact on long-term outcome in children who have drug-resistant Landau-Kleffner syndrome (LKS) or other "electrical status epilepticus during sleep" (ESES)-related regression. Given the wide variability in outcomes reported in the literature, a secondary aim was to explore predictors of outcome. METHODS: The current study includes a surgery group (n = 14) comprising patients who underwent multiple subpial transection of the posterior temporal lobe and a nonsurgery comparison group (n = 21) comprising patients who underwent presurgical investigations for the procedure, but who did not undergo surgery. Outcomes were assessed utilizing clinical note review as well as direct assessment and questionnaires. RESULTS: The distribution of nonclassical cases was comparable between groups. There were some differences between the surgery and nonsurgery groups at presurgical investigation including laterality of discharges, level of language impairment, and age; therefore, follow-up analyses focused on change over time and predictors of outcome. There were no statistically significant differences between the groups in language, nonverbal ability, adaptive behavior, or quality of life at follow-up. There was no difference in the proportion of patients showing improvement or deterioration in language category over time for either group. Continuing seizures and an earlier age of onset were most predictive of poorer quality of life at long-term follow-up (F2,23 = 26.2, p = <0.001, R(2) = 0.714). SIGNIFICANCE: Both surgery and nonsurgery groups had similar proportions of classic LKS and ESES-related regression. Because no significant differences were found in the changes observed from baseline to follow-up between the two groups, it is argued that there is insufficient evidence to suggest that multiple subpial transection provides additional benefits over and above the mixed recovery often seen in LKS and related regressive epilepsies.

Child abuse linked to faith or belief: working towards recognition in practice.

Child abuse linked to faith or belief (CALFB) is a worldwide issue that is linked to serious short-term and long-term consequences and even death. Children affected by CALFB may have undergone multiple abuses - such as ritual starvation, beatings, burns, stabbings and drowning - prompting concern in hospitals, schools and communities, including in emergency and primary care settings. Nurses have an important role in safeguarding children and young people, and their role in identifying and responding to CALFB is often challenging. This article uses a 'competemility' (cultural competence and cultural humility) approach to raise awareness of CALFB reporting and investigations in the UK. It examines medical evidence and psychosocial indicators of this form of abuse and explains the metaphorical language and thoughts associated with reported beliefs. The article aims to support nurses to be culturally sensitive to CALFB and to explore how they can contribute to preserve the safety of children in familial and community settings.

Adaptation of an evidence-based parenting intervention for integration into maternal-child home-visiting programs: Challenges and solutions.

Background: The objective of this study was to assess potential challenges, prioritize adaptations, and develop an implementation and research approach to integrate and study a parenting intervention for mothers in recovery from substance use disorders in community-based home-visiting programs. Method: An explanatory mixed-methods design, guided by process mapping with Failure Modes and Effects Analysis tools, and an Advisory Panel of 15 community members, identified potential implementation challenges and recommended solutions for the proposed intervention within five pre-specified domains. Thematic content analysis identified themes from detailed field notes. Results: The Advisory Panel identified 44 potential challenges across all domains. They determined that the recruitment domain was most likely to create challenges. Regarding the potential challenges, two cross-domain themes emerged: (1) development of mistrust in the community and (2) difficulty initiating and sustaining engagement. Potential solutions and adaptations to protocols are reported. Conclusion: Mistrust in the community was cited as a potentially important challenge for the delivery and study of an evidence-based parenting intervention for mothers in recovery through home-visiting programs. Adaptations to research protocols and intervention delivery strategies are needed to prioritize the psychological safety of families, particularly for groups that have been historically stigmatized.

Genomic Data Heterogeneity across Molecular Diagnostic Laboratories: A Real-World Connect Myeloid Disease Registry Perspective on Variabilities in Genomic Assay Methodology and Reporting.

Genomic data variability from laboratory reports can impact clinical decisions and population-level analyses; however, the extent of this variability and the impact on the data's value are not well characterized. This pilot study used anonymized genetic and genomic test reports from the Connect Myeloid Disease Registry (NCT01688011), a multicenter, prospective, observational cohort study of patients with newly diagnosed myelodysplastic syndromes, acute myeloid leukemia, or idiopathic cytopenia of undetermined significance, to analyze laboratory test variabilities and limitations. Results for 56 randomly selected patients enrolled in the Registry were independently extracted and evaluated (data cutoff, January 2020). Ninety-five reports describing 113 assay results from these 56 patients were analyzed for discrepancies. Almost all assay results [101 (89%)] identified the sequencing technology applied, and 94 (83%) described the test limitations; 95 (84%) described the limits of detection, but none described the limit of blank for detecting false positives. RNA transcript identifiers were not provided for 20 (43%) variants analyzed by next-generation sequencing and reported by the same laboratory. Of 42 variants with variant allele frequencies ≥30%, 16 (38%) of the variants did not have report text indicating that the variants might be germline. Variabilities and lack of standardization present challenges for incorporating this information into clinical care and render data collation ineffective and unreliable for large-scale use in centralized databases for therapeutic discovery.

Older adult's longitudinal experiences of household isolation and social distancing during the COVID-19 pandemic.

BACKGROUND: Due to the global pandemic, governments have enforced household isolation and social distancing to reduce infection and mortality rate. However, the impact of prolonged enforced isolation for older people who are prone to social isolation and loneliness has yet to be understood. OBJECTIVES: A longitudinal study to understand the lived experience of people aged 70 and older, living in England during COVID-19 restrictions. METHODS: All participants completed five qualitative telephone interviews from 20 April to 7 July 2020. The majority completed individual interviews (n = 13), whilst two participants completed these interviews as a couple. Interviews were audio-recorded, transcribed verbatim and thematic analysis completed from the perspective of hermeneutic phenomenology. RESULTS: Three themes included (1) engagement and confusion with government restrictions; (2) socialisation through virtual platforms and opportunistic physical social contact; and (3) accessing health care during COVID-19 restrictions. CONCLUSION: Older people are committed to following government restrictions, and government campaigns need to consider the potential impact of placing an emphasis on avoiding healthcare services. Virtual platforms are supportive but not sufficient to reduce social isolation and loneliness of older people. Thus, nurses supporting older people living in the community need to understand these concepts to provide holistic care and support older people's mental and physical health. IMPLICATIONS FOR PRACTICE: Nurses are ideally placed to support older people to understand the current government restrictions, when to attend acute healthcare services or to engage virtually with healthcare appointments, and to discuss the risks of physically socialising with others.

Relationship-Based Home Visiting Services for Families Affected by Substance Use Disorders: A Qualitative Study.

Home visiting programs face many challenges when providing evidence-based services to families affected by substance use disorders (SUDs). We conducted interviews and focus groups with community stakeholders and parents to elucidate important considerations when intentionally attempting to meet the needs of families affected by SUDs through home visiting programs. We identified one primary theme "Who is the client?" that describes how to ensure caregivers perceive themselves as an important focus of the program. Collectively, participants revealed that understanding caregivers' emotional experiences was critical for effectively transforming their subjective experiences of the program. These emotional experiences were related to the quality of their relationships with their children, other family members, and service providers. Three sub-themes illustrate specific examples: 1) responding to the unique emotional needs of mothers in recovery, 2) considering emotional states to inform inclusion in programs, and 3) addressing complex family dynamics related to SUDs in the home. Implications of these findings are discussed.

A Triple Threat: Parents in Recovery During COVID-19.

In this commentary, we describe the triple threat that parents in recovery face during the COVID-19 pandemic due to the loss of social support. We explore how the absence of human connection during the pandemic can be detrimental to parents in recovery as well as the parent-child relationship. We conclude by proposing strategies to offer critical support for families as this period of social isolation extends and the effects become increasingly apparent.

Worster-Drought syndrome: poorly recognized despite severe and persistent difficulties with feeding and speech.

AIM: Worster-Drought syndrome (WDS), or congenital suprabulbar paresis, is a permanent movement disorder of the bulbar muscles causing persistent difficulties with swallowing, feeding, speech, and saliva control owing to a non-progressive disturbance in early brain development. As such, it falls within the cerebral palsies. The aim of this study was to describe the physical and neuropsychological profiles of children with WDS. METHOD: Forty-two children with WDS (26 males, 16 females; mean age 7y 10mo, SD 3y 1mo; range 2y 6mo to 16y 5mo) were studied prospectively using a standard protocol. RESULTS: All of the children had severe bulbar dysfunction; 36 out of 42 had feeding difficulties and 23 of 38 had unintelligible speech, which was poorly compensated for by augmentative communication. There were accompanying disturbances in cognition (mean non-verbal IQ 59), behaviour (12/40 attention-deficit-hyperactivity disorder [ADHD]), social communication (8/42 autism), and epilepsy (12/39). The severity of bulbar dysfunction and impact of additional impairments made it difficult to use formal assessments. INTERPRETATION: WDS causes severe and persistent bulbar dysfunction that is often accompanied by additional impairments, as in other cerebral palsies. Speech prognosis is particularly poor. Early diagnosis with appreciation of the underlying neurology would encourage critical evaluation of interventions and long-term planning to improve outcome.