Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 25
Filtrar
1.
BMC Pregnancy Childbirth ; 23(1): 520, 2023 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-37460955

RESUMO

BACKGROUND: Medicalised Conception (MAC) assists many couples to achieve pregnancy worldwide. As the impact of MAC has been linked to increased pregnancy-specific anxiety and parenting difficulties, this review aimed to explore parental experiences of pregnancy and early parenting following MAC, identifying parents' psychological, social and health needs. METHOD: Five databases were searched systematically from inception to March 2023. Identified articles were screened for eligibility against the inclusion criteria and the results were analysed using thematic synthesis. The Critical Appraisal Skills checklist was employed to appraise methodological quality. RESULTS: Twenty qualitative studies, drawing on a total of 19 participant samples, were included in this review, most with samples with history of subfertility. The findings were synthesised into three main themes (consisting of seven subthemes): 1) The vulnerable parent: fear, doubt, uncertainty, 2) the stark realisation of the parental dream, 3) psychosocial needs and support. Parents lacked a sense of safety during pregnancy and reported acting protectively both antenatally and postnatally. Furthermore, their identity transition was complex and non-linear, influenced by sociocultural context. CONCLUSIONS: Considerable unmet psychosocial needs were identified including the potential for anxiety in pregnancy, the possibility of feeling excluded and marginalised, and a reluctance to share distress and experiences with healthcare professionals. These findings suggest a need for consistent, holistic care, integrating psychological services.


Assuntos
Poder Familiar , Pais , Técnicas de Reprodução Assistida , Feminino , Humanos , Gravidez , Emoções , Pessoal de Saúde , Poder Familiar/psicologia , Pais/psicologia , Pesquisa Qualitativa
2.
Seizure ; 105: 56-64, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36731257

RESUMO

OBJECTIVE: Many women with epilepsy need to continue anti-seizure medications (ASMs) throughout pregnancy. The current study investigated adaptive behaviour outcomes in children exposed to topiramate in the womb. METHOD: An observational, cross-sectional study was designed, recruiting mother-child-pairs from the UK Epilepsy and Pregnancy Register (UKEPR). Health, developmental histories and Vineland Adaptive Behaviour Scale-Third Edition (VABS-III) assessments were administered via telephone by a blinded researcher, supplemented with prospectively collected pregnancy and medication information. Topiramate monotherapy exposed children were compared to VABS-III normative data as recruitment was disrupted by the COVID-19 pandemic. RESULTS: Thirty-four women with epilepsy from 135 (25%) initially agreed to participate in the study, of whom 26 women completed telephone interviews about their children (n = 28). Children ranged from 2.5 to 17 years of age at the time of assessment. Six topiramate-exposed children were born small for gestational age, and there were significant associations between birthweight, dose and VABS-III scores. Significantly lower scores were observed in topiramate-exposed children (n = 21) with a significant dose-response relationship established after adjustment for parental educational level. Daily mean dosage was 280.21 mg, with high dosages of topiramate associated with a 12-point reduction in VABS-III scores. Additionally, four topiramate-exposed children (19.05%) had diagnoses of Autism Spectrum Disorder, which was significantly higher than UK prevalence rates (1.1%). CONCLUSIONS: The findings of poorer adaptive behaviour, higher incidence of ASD and associations with birth weight are of concern and require further validation and replication using larger prospectively-recruited samples and comparator cohorts. Implications for research and clinical practice are discussed.


Assuntos
Transtorno do Espectro Autista , COVID-19 , Epilepsia , Gravidez , Humanos , Feminino , Topiramato/efeitos adversos , Anticonvulsivantes/efeitos adversos , Transtorno do Espectro Autista/epidemiologia , Estudos Transversais , Pandemias , COVID-19/epidemiologia , Epilepsia/tratamento farmacológico , Epilepsia/epidemiologia , Epilepsia/diagnóstico , Estudos de Coortes , Adaptação Psicológica
3.
Clin Child Fam Psychol Rev ; 26(2): 303-342, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36807250

RESUMO

The consequences of Serious Mental Illness (SMI) on parent and child outcomes can be profound. Supporting parents to manage their caregiving roles alongside parental SMI successfully has been recognised as a public health priority. To meet this priority and develop effective and acceptable interventions, it is imperative that parents' experiences and support needs are understood. This systematic review aimed to synthesise qualitative research that explored parents' experiences and perceptions of the impact of SMI on their parenting and their corresponding support needs. The Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines were followed. Five databases were searched for terms associated with SMI, parenting, and qualitative research. Twenty-nine studies involving 562 parents who experienced SMI met inclusion criteria, and the methodological quality of included studies was appraised using the Critical Appraisal Skills Programme. After findings were synthesised using thematic synthesis, six themes were identified: (1) The constrained parent, (2) parenting difficulties, (3) the strained child, (4) inescapable threat, (5) combatting threat, and (6) wrap-around support needs. Novel insights into the centrality of SMI-related parenting difficulties and threat perceptions across parent, family, healthcare, and wider social systems on strained parent-child and distanced parent-support relationships were highlighted. Systemic practice change initiatives via compassionate and inclusive system-wide support were recommended.


Assuntos
Transtornos Mentais , Poder Familiar , Humanos , Pais , Pesquisa Qualitativa , Transtornos Mentais/terapia
4.
J Affect Disord ; 326: 168-192, 2023 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-36649790

RESUMO

BACKGROUND: Over the last 20 years, compassion focused therapy (CFT) has gained popularity as an emerging 'third wave' intervention. Although previous reviews indicated its potential benefits, a systematic review and meta-analysis of CFT in those with mental health difficulties has yet to be conducted. METHODS: A systematic search of five databases was undertaken, focusing on randomised controlled trials and randomised pilot/feasibility studies of CFT only. No language restrictions were implemented. A narrative synthesis was conducted. Random effects meta-analyses were measured on levels of self-compassion, self-criticism/self-reassurance, fears of compassion and clinical symptomology. RESULTS: Fifteen studies from 2013 to 2022 were included. Findings suggested that CFT was effective in improving compassion-based outcomes and clinical symptomology from baseline to post-intervention and compared to waitlist control. A range of small to large effect sizes were reported for improvements in self-compassion (0.19-0.90), self-criticism (0.15-0.72), self-reassurance (0.43-0.81), fear of self-compassion (0.18), depression (0.24-0.25) and eating disorders (0.18-0.79). Meta-analyses favoured CFT in improving levels of self-compassion and self-reassurance than control groups. LIMITATIONS: The methodological quality of many of the included studies (7/15) was rated as 'unclear' due to a lack of information. There was a distinct gender gap, with 74.88% identifying as female participants. CONCLUSIONS: This review was the first to examine the effectiveness of CFT in clinical populations. The results indicate that CFT has promising clinical implications, suggesting that the intervention increases compassion-based outcomes and reduces clinical symptomology in those with mental health difficulties. However, future research is required into the long-term effects of CFT.


Assuntos
Transtornos da Alimentação e da Ingestão de Alimentos , Psicoterapia de Grupo , Humanos , Feminino , Empatia , Psicoterapia de Grupo/métodos , Medo/psicologia , Autoavaliação (Psicologia)
5.
Clin Child Fam Psychol Rev ; 26(1): 190-211, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36318397

RESUMO

Parental mental illness is a major international public health concern given its implications for whole families, including children. Family-focused practice (FFP), an approach that emphasises a "whole-family" approach to care, provides an opportunity to mitigate the significant risks associated with parental mental health difficulties. The positive benefits associated with FFP have led to a shift in policy and practice towards prioritising FFP within adult mental health services. However, evidence suggests that FFP remains scarce and is not routine. Research has identified the important role of practitioners in facilitating FFP. The current review identified, synthesised and appraised the international qualitative literature examining adult mental health practitioners' implementation experiences of FFP. It aimed to provide an evidence-informed account of practitioner experiences of FFP delivery and to identify key recommendations to enhance future FFP outcomes in AMHS. Ovid Medline, PsycInfo, CINAHL plus, EMBASE and Web of Science Core Collection were searched systematically, in line with PRISMA guidance, up to January 2022. The Critical Appraisal Skills Programme (CASP) was used to undertake the quality appraisal prior to a thematic synthesis being conducted. The review was registered on PROSPERO. Nineteen papers, spanning 17 years of research with 469 practitioners, were included. Three main themes and 14 subthemes were developed, representing different aspects of practitioner experiences of FFP delivery. Practitioners' approach to FFP was variable and influenced by their beliefs about FFP, perceived roles and responsibilities, competence, service setting, and personal parenting status. Practitioners engaged in a balancing act to maintain a dual focus on their service-users and their children, to navigate powerful emotions, and consider multiple perspectives in a biomedical organisational structure that advocates individualised treatment. Although working together unified teams, a greater need for external interagency collaboration was identified. The use of strength-based approaches with clients and dedicated staff resources, within clear guidelines and frameworks, was reported to be necessary to maximise FFP delivery. This review proposes a complex FFP dynamic whereby practitioners engage in a constant balancing act between FFP stakeholders to achieve meaningful FFP outcomes for service-users and their families. Service recommendations are provided.


Assuntos
Transtornos Mentais , Serviços de Saúde Mental , Adulto , Humanos , Transtornos Mentais/terapia , Poder Familiar , Pais/psicologia
6.
Child Youth Care Forum ; 52(3): 661-681, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35975268

RESUMO

Background: Parent-only psychological interventions can be effective treatments for child anxiety. Involving parents in treatment may be beneficial for children, ensuring that interventions are delivered effectively in a supportive environment. Few studies have investigated the feasibility and acceptability of parent-only interventions for child anxiety. Objective: In this study, we report on feasibility, acceptability and preliminary clinical outcomes of a brief cognitive behavioural group intervention for parents of children (4- to 10-years-olds) experiencing anxiety in the absence of a diagnosed anxiety disorder. Method: Parent participants attended a three-session group intervention delivered online. We collected feasibility information (recruitment and retention rates); parents and children (when appropriate) completed acceptability and clinical outcome measures after each session. Participants were also interviewed about the acceptability of the intervention and study processes. Results: Nineteen parents consented to take part (child mean age 6.47, SD 1.23). Participant retention rates (68.4%) and intervention satisfaction (total mean CSQ score 28.52) were high​. Calculated effect sizes were moderate to large for parent-rated outcomes, small for child self-reported anxiety, and small to moderate for parent confidence/efficacy. Thematic analysis of interview data identified benefits, such as connecting with parents and learning strategies, as well as challenges associated with the intervention. Conclusions: Attendance appeared to be associated with positive changes for parents and children. Overall, participants found this to be an acceptable and useful intervention. These findings demonstrated the potential benefit of a brief intervention for parents of anxious children. A larger trial is required to further investigate these preliminary findings.

7.
Orphanet J Rare Dis ; 17(1): 193, 2022 05 12.
Artigo em Inglês | MEDLINE | ID: mdl-35550173

RESUMO

BACKGROUND: Lysosomal acid lipase deficiency (LALD) is an ultra-rare, inherited metabolic disease within the category of lysosomal storage disorders, affecting an infant's ability to metabolise cholesterol. Developments in treatment, including Enzyme Replacement Therapy, have proven successful, with some children living for a number of years with treatment, although the future still remains unknown. The aim of this study was to explore the lived experiences of parents of children with LALD. MAIN TEXT: Participants were recruited from across the United Kingdom between 2020 and 2021. Eight parents (five mothers and three fathers) whose child had a confirmed diagnosis of LALD were interviewed. Data collected from the semi-structured interviews were audio-record, transcribed and analysed using Interpretative Phenomenological Analysis (IPA). Three superordinate and nine subordinate themes emerged from the data: (1) Uncertainty-a double-edged sword (plunged into an uncertain world, living life with worry and walking the tightrope of stability), (2) Powerless against a shared battle with LALD (a helpless parent, a joint battle, protection against distress and a vulnerable parent needing help) and 3) Accepting a life with LALD (coming to terms with a diagnosis of LALD and a hidden condition). CONCLUSIONS: The findings of this study highlight that the diagnosis of LALD proves to be a very challenging and emotionally distressing time in parents' lives, with increased uncertainty about what the future will hold for their child. This study signified the importance of healthcare pathways and service provisions to support parents and their children throughout diagnosis and beyond.


Assuntos
Doença de Wolman , Criança , Terapia de Reposição de Enzimas , Feminino , Humanos , Lactente , Mães , Pais/psicologia , Pesquisa Qualitativa , Doença de Wolman/diagnóstico , Doença de Wolman
8.
J Affect Disord ; 309: 324-349, 2022 07 15.
Artigo em Inglês | MEDLINE | ID: mdl-35460744

RESUMO

BACKGROUND: Parent-only interventions for childhood anxiety may be an important alternative to resource and time intensive child-focused cognitive behavioural therapy (CBT). This systematic review and meta-analysis aimed to investigate the efficacy of parent-only interventions in reducing symptoms of anxiety disorders in school-aged children. METHODS: A systematic search of five databases (inception to March 2021) identified 29 eligible studies. A range of study designs were captured, including randomised controlled trials (RCTs) and case series. A narrative synthesis was conducted. Random effects meta-analyses were performed on parent- and child-reported outcomes and pre-test post-test effect sizes were calculated for uncontrolled studies. RESULTS: Findings indicated a significant treatment effect for parent-only interventions compared to waitlist controls. No significant differences were found when comparing parent-only interventions with other active interventions; anxiety symptoms reduced in both conditions. No significant treatment effects were found for child-rated outcomes. Calculated effect sizes for uncontrolled studies were typically large, although sample sizes were small. No clear evidence was found for a superior type, duration or format of intervention. LIMITATIONS: The methodological quality of many studies in this review (19/29) was rated 'weak'. Only English language papers were included. CONCLUSIONS: To date, this is the first systematic review and meta-analysis of the efficacy of parent-only interventions for reducing symptoms of child anxiety disorders. Our results suggest that parent-only interventions may be effective in reducing child anxiety. These findings are important for clinical practice because they suggest that efficient, low intensity interventions delivered to parents may lead to positive outcomes for children.


Assuntos
Transtornos do Comportamento Infantil , Terapia Cognitivo-Comportamental , Ansiedade , Transtornos de Ansiedade/terapia , Criança , Humanos , Pais/psicologia , Ensaios Clínicos Controlados Aleatórios como Assunto
9.
Community Ment Health J ; 57(2): 247-261, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-32445074

RESUMO

Parents with mental health difficulties face significant barriers in accessing evidence-based parenting interventions. Self-directed approaches may be a destigmatising, accessible alternative. Evidence has suggested that Triple P Positive Parenting Programme's self-directed format is as effective as more time- and cost-intensive delivery methods. The aim of the current study was to establish whether staff were able to use this intervention with parents with mental health difficulties and to explore staff experiences of implementation. Triple P self-help workbooks were provided to practitioners across three teams. Data were collected regarding workbook uptake and use. Interviews with staff exploring their experiences of implementation were analysed using thematic analysis. Overall, 41 participants were recruited, of which 12 (29.27%) also consented to interviews. Overall, six practitioners (14.63%) reported that they utilised the workbook. Uptake and utilisation were varied, but practitioners who used the workbook reported positive outcomes. Interviews revealed themes regarding practitioner concerns, views of the intervention and implementation issues. Self-directed Triple remains a promising intervention but its feasibility is dependent on addressing barriers to implementation and facilitating a family-focused approach to meet the needs of these parents and their children.


Assuntos
Saúde Mental , Poder Familiar , Criança , Comportamentos Relacionados com a Saúde , Humanos , Pais
10.
Arch Womens Ment Health ; 24(2): 173-184, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-32936329

RESUMO

Previous research has identified how menstruation is an important factor in both attempted and completed suicides for women. The purpose of this review was to outline (a) the risk profile for suicidality in women who were identified to experience Premenstrual Dysphoric Disorder (PMDD), a condition characterized by severe physical and psychological changes that occur during the luteal menstrual phase, and (b) the implications of these findings for clinical practice. A systematic literature review was conducted using five databases to identify any peer-reviewed articles published between 1989 and 2019. Ten papers eligible for inclusion were identified: three pertaining to suicide cognitions, five to suicide attempts and two to both cognitions and attempts. Findings showed that suicidal thoughts, ideation, plans and attempts were strongly associated with experiences of PMDD and that these findings were independent of psychiatric co-morbidities. However, women with PMDD did not present with more severe risk profiles for suicide attempts (in terms of frequency, impulsivity and lethality) or make more frequent attempts during the luteal menstrual phase compared with suicide attempters without PMDD. Women with PMDD should be considered a high risk group for suicidality; thus, identifying and treating symptoms are vital in reducing suicide attempts. Implications for clinical practice are outlined in the discussion.


Assuntos
Transtorno Disfórico Pré-Menstrual , Síndrome Pré-Menstrual , Suicídio , Feminino , Humanos , Transtorno Disfórico Pré-Menstrual/epidemiologia , Síndrome Pré-Menstrual/epidemiologia , Ideação Suicida , Tentativa de Suicídio
11.
Clin Psychol Rev ; 82: 101906, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32977111

RESUMO

BACKGROUND: Meaningful, valid and reliable self-report measures can facilitate the identification of important parent-infant-relationship factors, relevant intervention development and subsequent evaluation in community and clinical contexts. We aimed at identifying all available parent-report measures of the parent-infant-relationship or bond and to appraise their psychometric and clinimetric properties. METHOD: A systematic review (PROSPERO: CRD42017078512) was conducted using the, 2018 COSMIN criteria. Eight electronic databases were searched. Papers describing the development of self-report measures of the parent-infant-bond, attachment or relationship from pregnancy until two years postpartum or the assessment of their psychometric properties were included. RESULTS: Sixty-five articles evaluating 17 original measures and 13 modified versions were identified and reviewed. The studies' methodological quality (risk of bias) varied between 'very good' and 'inadequate' depending on the measurement property assessed; however, scale development studies were mostly of 'inadequate' quality. Although most measures had good clinical utility, the psychometric evaluation of their properties was largely poor. The original or modified versions of the Postpartum Bonding Questionnaire collectively received the strongest psychometric evaluation ratings with high quality of evidence. CONCLUSIONS: This novel review revealed that only a few antenatal and postnatal measures demonstrated adequate psychometric properties. Further studies are needed to determine the most robust perinatal measures for researchers and clinicians.


Assuntos
Apego ao Objeto , Pais , Feminino , Humanos , Lactente , Gravidez , Psicometria , Autorrelato , Inquéritos e Questionários
12.
Arch Womens Ment Health ; 23(5): 597-612, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32020314

RESUMO

Postpartum psychosis is a serious disorder that can result in adverse consequences for the mother and baby. It is important that we understand the experiences of women, to develop effective interventions during this critical period. The aim of this systematic review was to conduct a metasynthesis of qualitative research exploring women's experiences of postpartum psychosis and factors involved in recovery from the perspective of women and family members. A comprehensive literature search of five databases was conducted and the findings were appraised and synthesised, following a thematic synthesis approach. Fifteen studies, capturing the views of 103 women and 42 family members, met the inclusion criteria. Four main themes incorporating 13 subthemes were identified following synthesis: (1) Experiencing the unspeakable, (2) Loss and disruption, (3) Realigning old self and new self and the integrative theme of (4) Social context. The findings offer new insight into the unique experience of postpartum psychosis and demonstrate that recovery does not follow a linear path. To improve clinical outcomes, a more integrative and individualised approach is needed which incorporates long-term psychological and psychosocial support, and considers the needs of the family. Further areas for staff training, service development and future research are highlighted.


Assuntos
Família/psicologia , Mães/psicologia , Transtornos Psicóticos/psicologia , Transtornos Puerperais/psicologia , Adulto , Feminino , Humanos , Pessoa de Meia-Idade , Período Pós-Parto/psicologia , Pesquisa Qualitativa , Adulto Jovem
13.
Clin Child Fam Psychol Rev ; 23(2): 176-204, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31820298

RESUMO

Supporting parents to meet the challenges of their caregiving role is identified as a public health concern and a priority in policies internationally. Quantitative research has established the efficacy of parenting programmes but less is understood about the key aspects that make interventions meaningful and helpful to families. We aimed to explore parents' experiences and perceptions of parenting programmes in order to highlight the parent voice and identify key factors that parents perceive to be meaningful and improve our understanding of the acceptability and perceived benefits of parenting programmes. Six key electronic databases were searched systematically for qualitative research and eligibility for inclusion was established. A thematic synthesis was undertaken. Twenty-six studies were included, spanning 17 years of parenting research and involving 822 parents. Three main themes and nine subthemes were identified: (1) a family's journey (prior to the parenting programme, outcomes (including changes in the parent, child and wider family) and post-intervention), (2) aspects perceived to be important or valuable (group leader or facilitator, programme content and delivery and value of the group) and (3) challenges or difficulties (barriers to engagement or attendance, programme content and suggestions for improvement). Reported outcomes of parenting programmes included changes in the parent alongside changes in the child and family more widely. Key recommendations to improve provision of accessible, clinically and cost-effective interventions for parents include ensuring high-quality training and supervision of facilitators, balancing flexibility and fidelity to ensure tailored content to meet individual needs, a sensitivity to parental adversity, the need for wider familial support and the availability of ongoing support following the end of a parenting programme.


Assuntos
Educação não Profissionalizante , Avaliação de Processos e Resultados em Cuidados de Saúde , Poder Familiar , Pais , Avaliação de Programas e Projetos de Saúde , Adulto , Criança , Humanos
14.
BMC Psychiatry ; 19(1): 411, 2019 12 19.
Artigo em Inglês | MEDLINE | ID: mdl-31856785

RESUMO

BACKGROUND: Postpartum psychosis is a rare, yet severe disorder, in which early identification and immediate intervention are crucial. Despite recommendations for psychological input, little is known about the types of psychological intervention reported to be helpful. The aim of this study was to explore the experiences, needs and preferences for psychological intervention from the perspective of women with postpartum psychosis and from the perspective of family members. METHODS: Thirteen women and eight family members, including partners were interviewed. The data from these semi-structured interviews were audio-recorded, transcribed and inductively analysed using thematic analysis. RESULTS: Twelve subthemes were identified and then organised around three main themes: 1) Seeking safety and containment, 2) Recognising and responding to the psychological impact and 3) Planning for the future. These themes highlight the temporal element of recovery from postpartum psychosis, because women's psychological needs and preferences changed over time. Emphasis was initially placed on ensuring safety, followed by a need to connect, process and adjust to their experiences. Additional needs were reported by women and family when planning for the future, including managing the fear of relapse and help to reach a decision about future pregnancies. CONCLUSION: The results illustrate a range of areas in which psychological intervention could be delivered to facilitate and enhance recovery. Further research is needed to develop meaningful and effective psychological interventions and to investigate the most appropriate timing for this to be offered.


Assuntos
Transtornos Psicóticos/terapia , Transtornos Puerperais/terapia , Adulto , Família/psicologia , Medo/psicologia , Feminino , Humanos , Período Pós-Parto/psicologia , Gravidez , Transtornos Psicóticos/psicologia , Pesquisa Qualitativa , Parceiros Sexuais/psicologia
15.
J Autism Dev Disord ; 49(1): 54-67, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30014250

RESUMO

Movement disorders are reported in idiopathic autism but the extent to which comparable movement disorders are found in syndromic/co-morbid autism is unknown. A systematic search of Medline, Embase, PsychINFO and CINAHL on the prevalence of specific movement disorder in syndromic autism associated with specific genetic syndromes identified 16 papers, all relating to Angelman syndrome or Rett syndrome. Prevalence rates of 72.7-100% and 25.0-27.3% were reported for ataxia and tremor, respectively, in Angelman syndrome. In Rett syndrome, prevalence rates of 43.6-50% were reported for ataxia and 27.3-48.3% for tremor with additional reports of dystonia, rigidity and pyramidal signs. However, reliable assessment measures were rarely used and recruitment was often not described in sufficient detail.


Assuntos
Transtorno Autístico/epidemiologia , Transtornos dos Movimentos/epidemiologia , Síndrome de Angelman/epidemiologia , Comorbidade , Humanos , Prevalência , Síndrome de Rett/epidemiologia
16.
J Intellect Disabil Res ; 62(6): 486-495, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29536582

RESUMO

BACKGROUND: Catatonia-like presentations in people with autism have been increasingly recognised within research and diagnostic guidelines. The recently developed Attenuated Behaviour Questionnaire has identified that attenuated behaviour [autistic catatonia] is very prevalent in people with autism spectrum disorders (ASDs) and associated with repetitive behaviour. In the current study, we investigated attenuated behaviour within two genetic syndromes associated with ASD and examined ASD and repetitive behaviour as longitudinal predictors of attenuated behaviour. METHOD: The Attenuated Behaviour Questionnaire was completed by parents/carers of 33 individuals with Cornelia de Lange syndrome (CdLS) and 69 with fragile X syndrome (FXS). Information collected from the same informants 4 years previously was utilised to examine ASD and repetitive behaviour as predictors of later attenuated behaviour, controlling for age, gender and ability. RESULTS: Catatonia-like attenuated behaviour was reported for individuals with CdLS (30.3%) and FXS (11.6%). Slowed movement was more prevalent in people with CdLS. No other phenotypic differences were observed. Across the two groups, repetitive behaviour predicted the presence of attenuated behaviour 4 years later, after controlling for age, gender and ability. CONCLUSIONS: Attenuated behaviour can be identified in individuals with CdLS and FXS and may have an effect on both adaptive behaviour and quality of life. Repetitive behaviours predicted subsequent risk within both groups and should be assessed by services as part of a pro-active strategy of support.


Assuntos
Transtorno do Espectro Autista/epidemiologia , Catatonia/epidemiologia , Síndrome de Cornélia de Lange/epidemiologia , Síndrome do Cromossomo X Frágil/epidemiologia , Transtorno de Movimento Estereotipado/epidemiologia , Adolescente , Adulto , Transtorno do Espectro Autista/fisiopatologia , Cuidadores , Catatonia/fisiopatologia , Criança , Comorbidade , Síndrome de Cornélia de Lange/fisiopatologia , Feminino , Síndrome do Cromossomo X Frágil/fisiopatologia , Humanos , Irlanda/epidemiologia , Masculino , Pessoa de Meia-Idade , Transtorno de Movimento Estereotipado/fisiopatologia , Inquéritos e Questionários , Reino Unido/epidemiologia , Adulto Jovem
17.
J Autism Dev Disord ; 47(11): 3620-3633, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28856504

RESUMO

The prevalence of autism spectrum disorder (ASD) in many genetic disorders is well documented but not as yet in Mucopolysaccharidosis type III (MPS III). MPS III is a recessively inherited metabolic disorder and evidence suggests that symptoms of ASD present in MPS III. This systematic review examined the extant literature on the symptoms of ASD in MPS III and quality assessed a total of 16 studies. Results indicated that difficulties within speech, language and communication consistent with ASD were present in MPS III, whilst repetitive and restricted behaviours and interests were less widely reported. The presence of ASD-like symptoms can result in late diagnosis or misdiagnosis of MPS III and prevent opportunities for genetic counselling and the provision of treatments.


Assuntos
Transtorno do Espectro Autista/epidemiologia , Mucopolissacaridose III/epidemiologia , Adolescente , Adulto , Transtorno do Espectro Autista/diagnóstico , Criança , Erros de Diagnóstico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Mucopolissacaridose III/diagnóstico
18.
BJOG ; 124(9): 1321-1330, 2017 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-28332762

RESUMO

BACKGROUND: There is little consensus regarding the hypothesised link between obstetric consultant presence and maternal and neonatal outcomes. OBJECTIVES: To pool existing data on the impact of consultant presence on the outcomes of women who have given birth in UK National Health Service (NHS) maternity units. SEARCH STRATEGY: Twelve databases, grey literature, and reference lists were searched. SELECTION CRITERIA: Studies conducted in UK NHS maternity units comparing outcomes during lesser consultant presence versus increased consultant presence that reported mode of delivery and adverse maternal or neonatal outcomes. DATA COLLECTION AND ANALYSIS: Studies were divided into three groups by type of comparison: (1) hours of rostered consultant presence during the weekend versus hours of rostered consultant presence during the week; (2) hours per week of rostered consultant presence pre-increase versus hours per week of rostered consultant presence post-increase; and (3) no rostered consultant presence versus rostered consultant presence. A random-effects meta-analysis was performed. MAIN RESULTS: Fifteen studies fulfilled the inclusion criteria, presenting data from 125 856 births. Overall, there was no significant difference between lesser and increased consultant presence for any outcome. When data were stratified by comparison type, the likelihood of emergency caesarean section was significantly lower (odds ratio, OR 0.91; 95% confidence interval, 95% CI 0.86-0.96) and the likelihood of non-instrumental vaginal delivery was significantly higher (OR 1.07; 95% CI 1.02-1.12) when the rostered hours of consultant presence per week were increased. CONCLUSIONS: Increased consultant presence has some effect on mode of delivery, but no evidence for a benefit for adverse outcomes was found. TWEETABLE ABSTRACT: Increasing hours of NHS obstetric consultant presence may increase chance of non-instrumental vaginal delivery.


Assuntos
Consultores , Parto Obstétrico/educação , Internato e Residência/organização & administração , Unidade Hospitalar de Ginecologia e Obstetrícia/organização & administração , Obstetrícia/educação , Medicina Estatal/organização & administração , Parto Obstétrico/métodos , Parto Obstétrico/estatística & dados numéricos , Feminino , Humanos , Recém-Nascido , Modelos Estatísticos , Complicações do Trabalho de Parto/epidemiologia , Complicações do Trabalho de Parto/terapia , Obstetrícia/métodos , Obstetrícia/organização & administração , Razão de Chances , Gravidez , Resultado da Gravidez , Reino Unido
19.
J Intellect Disabil Res ; 60(11): 1054-1065, 2016 11.
Artigo em Inglês | MEDLINE | ID: mdl-26929020

RESUMO

BACKGROUND: The current study investigated how ideas and models from the 'New Genetics' and associated fields of developmental neuroscience and behavioural phenotypes are perceived by clinical psychologists working with people with intellectual and developmental disabilities (IDD). As well as examining the take-up and influence of such ideas, it also examines barriers, both personal and institutional, to the widespread adoption of such concepts and research findings in services for people with IDD. METHODS: A Q-methodology study was undertaken with 31 qualified and 16 trainee clinical psychologists in the North West of England using a specifically developed 81-item Q set. RESULTS: Three factors were identified and labelled Integration of social and medical models, Social model of disability is more helpful and Genetic advances in conflict with recognising the value of people with IDD. CONCLUSION: There was a lack of consensus in clinical psychologists working with people with IDD, with amount and type of professional experience affecting the factor loadings, which may need to be considered in developing clinical applications of genetic IDD research.


Assuntos
Atitude do Pessoal de Saúde , Deficiências do Desenvolvimento , Conhecimentos, Atitudes e Prática em Saúde , Deficiência Intelectual , Biologia Molecular , Psicologia Clínica , Adulto , Deficiências do Desenvolvimento/genética , Feminino , Humanos , Deficiência Intelectual/genética , Masculino , Projetos Piloto , Q-Sort
20.
Child Care Health Dev ; 41(3): 384-96, 2015 May.
Artigo em Inglês | MEDLINE | ID: mdl-25358307

RESUMO

BACKGROUND: Parents of children with tic disorders (e.g. Tourette syndrome) experience multiple challenges and stresses, which can impact on family functioning, children's well-being and could indirectly affect tic severity. Parenting interventions have been recommended for tic disorder populations; however, little is known about parents' views. METHOD: The views of parents of children with tic disorders were sought. Using Q-methodology, 23 parents provided their opinions regarding the acceptability, effectiveness, feasibility and utility of parenting interventions. RESULTS: Four factors emerged, representing four groups of parents with similar opinions. Although all factors evidenced support for parenting interventions, subtle differences emerged between factors regarding the endorsed content, barriers and delivery of interventions. CONCLUSION: Results indicate a perceived clinical need for parenting interventions and provide guidance to further develop and implement such interventions.


Assuntos
Proteção da Criança/psicologia , Poder Familiar , Pais/psicologia , Síndrome de Tourette/psicologia , Adulto , Criança , Feminino , Humanos , Masculino , Pais/educação , Avaliação de Programas e Projetos de Saúde , Apoio Social , Estresse Psicológico
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA
...