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1.
J Child Adolesc Ment Health ; 33(1-3): 55-74, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-37539544

RESUMEN

Background: In schools, teachers are often tasked with implementing mental health and well-being programmes. However, little is known about teachers' views on and experiences with implementing these programmes.Aim: The aim of this systematic review was to explore teachers' views and experiences of mental health and well-being intervention programmes developed to promote and protect student mental health.Methods: A systematic review of the empirical literature was conducted using the following databases: Academic Search Complete, APA PsycArticles, APA PsycInfo, British Education Index, Education Full Text (H.W. Wilson), ERIC, Social Sciences Full Text (H.W. Wilson), and SocINDEX with Full Text.Findings: Seven papers met the inclusion criteria. Teachers reported several challenges to the successful implementation of mental health and well-being programmes, including a lack of time allotted in the curriculum, insufficient training, and inadequate interagency support. There was evidence of conflicting opinions regarding the role of teachers in supporting students.Conclusion: It is recommended that mental health and well-being are viewed as central to schools' ethos and that teachers are adequately prepared to implement programmes.

2.
Health Qual Life Outcomes ; 18(1): 105, 2020 Apr 22.
Artículo en Inglés | MEDLINE | ID: mdl-32321519

RESUMEN

BACKGROUND: The QOL-PCD questionnaire is a recently developed Health Related Quality of Life (HRQoL) instrument for Primary Ciliary Dyskinesia. The aim of this study was to translate the adult QOL-PCD questionnaire into Greek language and to conduct psychometric validation to assess its performance. METHODS: Forward translations to Greek and backward translation to English were performed, followed by cognitive interviews in 12 adult PCD patients. The finalized translated version was administered to a consecutive sample of 31 adult, Greek speaking PCD patients in Cyprus for psychometric validation, which included assessment of internal consistency, test-retest reliability, construct and convergent validity. Internal consistency was assessed by Cronbach's alpha test in terms of the overall and sub-scales. Test-retest reliability was assessed by repeat administration of the questionnaire within 2 weeks and calculation of the intra-class correlation (ICC). Construct validity was assessed by comparing different groups of patients based on a-priori hypotheses and convergent validity was evaluated by examining associations between the QOL-PCD and SF-36 questionnaires. RESULTS: Moderate to good internal consistency was observed (Cronbach's α: 0.46-0.88 across sub-scales) and test-retest reliability assessment demonstrated good repeatability for most scales (ICC: 0.67-0.91 across subscales). Patients of female gender, older age and lower lung function exhibited lower QOL-PCD scores in general, while high correlations for most QOL-PCD scales with corresponding SF-36 scales were observed, in particular for physical functioning (r = 0.78, p < 0.05). CONCLUSION: The adult version of QoL-PCD questionnaire has been translated according to international guidelines resulting to a cross-culturally validated Greek version which exhibited moderate to good metric properties in terms of internal consistency, stability, known-group and convergent validity.


Asunto(s)
Trastornos de la Motilidad Ciliar/psicología , Calidad de Vida , Encuestas y Cuestionarios/normas , Adulto , Chipre , Femenino , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Reproducibilidad de los Resultados , Traducciones , Adulto Joven
3.
Respir Res ; 20(1): 212, 2019 Sep 18.
Artículo en Inglés | MEDLINE | ID: mdl-31533829

RESUMEN

BACKGROUND: Lung resection is a controversial and understudied therapeutic modality in Primary Ciliary Dyskinesia (PCD). We assessed the prevalence of lung resection in PCD across countries and compared disease course in lobectomised and non-lobectomised patients. METHODS: In the international iPCD cohort, we identified lobectomised and non-lobectomised age and sex-matched PCD patients and compared their characteristics, lung function and BMI cross-sectionally and longitudinally. RESULTS: Among 2896 patients in the iPCD cohort, 163 from 20 centers (15 countries) underwent lung resection (5.6%). Among adult patients, prevalence of lung resection was 8.9%, demonstrating wide variation among countries. Compared to the rest of the iPCD cohort, lobectomised patients were more often females, older at diagnosis, and more often had situs solitus. In about half of the cases (45.6%) lung resection was performed before presentation to specialized PCD centers for diagnostic work-up. Compared to controls (n = 197), lobectomised patients had lower FVC z-scores (- 2.41 vs - 1.35, p = 0.0001) and FEV1 z-scores (- 2.79 vs - 1.99, p = 0.003) at their first post-lung resection assessment. After surgery, lung function continued to decline at a faster rate in lobectomised patients compared to controls (FVC z-score slope: - 0.037/year Vs - 0.009/year, p = 0.047 and FEV1 z-score slope: - 0.052/year Vs - 0.033/year, p = 0.235), although difference did not reach statistical significance for FEV1. Within cases, females and patients with multiple lobe resections had lower lung function. CONCLUSIONS: Prevalence of lung resection in PCD varies widely between countries, is often performed before PCD diagnosis and overall is more frequent in patients with delayed diagnosis. After lung resection, compared to controls most lobectomised patients have poorer and continuing decline of lung function despite lung resection. Further studies benefiting from prospective data collection are needed to confirm these findings.


Asunto(s)
Trastornos de la Motilidad Ciliar/cirugía , Pulmón/cirugía , Adolescente , Adulto , Índice de Masa Corporal , Estudios de Casos y Controles , Niño , Preescolar , Estudios de Cohortes , Estudios Transversales , Femenino , Volumen Espiratorio Forzado , Humanos , Estudios Longitudinales , Masculino , Prevalencia , Estudios Prospectivos , Pruebas de Función Respiratoria , Resultado del Tratamiento , Adulto Joven
4.
Eur Respir J ; 52(2)2018 08.
Artículo en Inglés | MEDLINE | ID: mdl-30049738

RESUMEN

Primary ciliary dyskinesia (PCD) has been considered a relatively mild disease, especially compared to cystic fibrosis (CF), but studies on lung function in PCD patients have been few and small.This study compared lung function from spirometry of PCD patients to normal reference values and to published data from CF patients. We calculated z-scores and % predicted values for forced expiratory volume in 1 s (FEV1) and forced vital capacity (FVC) using the Global Lung Function Initiative 2012 values for 991 patients from the international PCD Cohort. We then assessed associations with age, sex, country, diagnostic certainty, organ laterality, body mass index and age at diagnosis in linear regression models. Lung function in PCD patients was reduced compared to reference values in both sexes and all age groups. Children aged 6-9 years had the smallest impairment (FEV1 z-score -0.84 (-1.03 to -0.65), FVC z-score -0.31 (-0.51 to -0.11)). Compared to CF patients, FEV1 was similarly reduced in children (age 6-9 years PCD 91% (88-93%); CF 90% (88-91%)), but less impaired in young adults (age 18-21 years PCD 79% (76-82%); CF 66% (65-68%)). The results suggest that PCD affects lung function from early in life, which emphasises the importance of early standardised care for all patients.


Asunto(s)
Trastornos de la Motilidad Ciliar/fisiopatología , Pulmón/fisiopatología , Adolescente , Adulto , Factores de Edad , Índice de Masa Corporal , Niño , Preescolar , Fibrosis Quística/fisiopatología , Femenino , Volumen Espiratorio Forzado , Humanos , Lactante , Recién Nacido , Internacionalidad , Modelos Lineales , Masculino , Persona de Mediana Edad , Valores de Referencia , Estudios Retrospectivos , Factores Sexuales , Espirometría , Capacidad Vital , Adulto Joven
5.
Issues Ment Health Nurs ; 39(7): 575-584, 2018 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-29465285

RESUMEN

This study examined the prevalence of depressive symptoms and suicidal ideation among 220 first year undergraduate university students in Ireland. Data were collected using the Centre for Epidemiological Studies Depression Scale and the Suicidal Behaviours Questionnaire. Findings indicated that 59% of participants experienced depressive symptoms and 28.5% had suicidal ideation. Financial stress and poor relationships with both parents, increased the odds of experiencing depressive symptoms. Sexual orientation, financial stress, and poor relationships with fathers, increased the odds of experiencing suicidal ideation. Suicidal ideation was also higher in those who had sought help in the past from mental health professionals. Nurses need to be aware of the factors associated with mental ill-health in this population.


Asunto(s)
Depresión/epidemiología , Estudiantes/psicología , Ideación Suicida , Adolescente , Adulto , Estudios Transversales , Femenino , Humanos , Irlanda , Masculino , Prevalencia , Adulto Joven
6.
Thorax ; 72(9): 832-839, 2017 09.
Artículo en Inglés | MEDLINE | ID: mdl-28246220

RESUMEN

BACKGROUND: Quality of life (QOL)-primary ciliary dyskinesia (PCD) is the first disease-specific, health-related QOL instrument for PCD. Psychometric validation of QOL-PCD assesses the performance of this measure in adults, including its reliability, validity and responsiveness to change. METHODS: Seventy-two adults (mean (range) age: 33 years (18-79 years); mean (range) FEV1% predicted: 68 (26-115)) with PCD completed the 49-item QOL-PCD and generic QOL measures: Short-Form 36 Health Survey, Sino-Nasal Outcome Test 20 (SNOT-20) and St George Respiratory Questionnaire (SGRQ)-C. Thirty-five participants repeated QOL-PCD 10-14 days later to measure stability or reproducibility of the measure. RESULTS: Multitrait analysis was used to evaluate how the items loaded on 10 hypothesised scales: physical, emotional, role and social functioning, treatment burden, vitality, health perceptions, upper respiratory symptoms, lower respiratory symptoms and ears and hearing symptoms. This analysis of item-to-total correlations led to 9 items being dropped; the validated measure now comprises 40 items. Each scale had excellent internal consistency (Cronbach's α: 0.74 to 0.94). Two-week test-retest demonstrated stability for all scales (intraclass coefficients 0.73 to 0.96). Significant correlations were obtained between QOL-PCD scores and age and FEV1. Strong relationships were also found between QOL-PCD scales and similar constructs on generic questionnaires, for example, lower respiratory symptoms and SGRQ-C (r=0.72, p<0.001), while weak correlations were found between measures of different constructs. CONCLUSIONS: QOL-PCD has demonstrated good internal consistency, test-retest reliability, convergent and divergent validity. QOL-PCD offers a promising tool for evaluating new therapies and for measuring symptoms, functioning and QOL during routine care.


Asunto(s)
Síndrome de Kartagener/rehabilitación , Calidad de Vida , Adolescente , Adulto , Distribución por Edad , Anciano , Empleo/estadística & datos numéricos , Femenino , Volumen Espiratorio Forzado/fisiología , Humanos , Síndrome de Kartagener/complicaciones , Síndrome de Kartagener/fisiopatología , Síndrome de Kartagener/psicología , Masculino , Persona de Mediana Edad , Psicometría , Reproducibilidad de los Resultados , Enfermedades Respiratorias/etiología , Distribución por Sexo , Encuestas y Cuestionarios , Adulto Joven
7.
Eur Respir J ; 50(6)2017 12.
Artículo en Inglés | MEDLINE | ID: mdl-29269581

RESUMEN

Chronic respiratory disease can affect growth and nutrition, which can influence lung function. We investigated height, body mass index (BMI), and lung function in patients with primary ciliary dyskinesia (PCD).In this study, based on the international PCD (iPCD) Cohort, we calculated z-scores for height and BMI using World Health Organization (WHO) and national growth references, and assessed associations with age, sex, country, diagnostic certainty, age at diagnosis, organ laterality and lung function in multilevel regression models that accounted for repeated measurements.We analysed 6402 measurements from 1609 iPCD Cohort patients. Height was reduced compared to WHO (z-score -0.12, 95% CI -0.17 to -0.06) and national references (z-score -0.27, 95% CI -0.33 to -0.21) in male and female patients in all age groups, with variation between countries. Height and BMI were higher in patients diagnosed earlier in life (p=0.026 and p<0.001, respectively) and closely associated with forced expiratory volume in 1 s and forced vital capacity z-scores (p<0.001).Our study indicates that both growth and nutrition are affected adversely in PCD patients from early life and are both strongly associated with lung function. If supported by longitudinal studies, these findings suggest that early diagnosis with multidisciplinary management and nutritional advice could improve growth and delay disease progression and lung function impairment in PCD.


Asunto(s)
Estatura , Índice de Masa Corporal , Trastornos de la Motilidad Ciliar/fisiopatología , Estado Nutricional , Adolescente , Adulto , Distribución por Edad , Niño , Preescolar , Progresión de la Enfermedad , Femenino , Humanos , Lactante , Recién Nacido , Modelos Lineales , Masculino , Persona de Mediana Edad , Valores de Referencia , Pruebas de Función Respiratoria , Estudios Retrospectivos , Adulto Joven
8.
Eur Respir J ; 49(1)2017 01.
Artículo en Inglés | MEDLINE | ID: mdl-27836958

RESUMEN

The diagnosis of primary ciliary dyskinesia is often confirmed with standard, albeit complex and expensive, tests. In many cases, however, the diagnosis remains difficult despite the array of sophisticated diagnostic tests. There is no "gold standard" reference test. Hence, a Task Force supported by the European Respiratory Society has developed this guideline to provide evidence-based recommendations on diagnostic testing, especially in light of new developments in such tests, and the need for robust diagnoses of patients who might enter randomised controlled trials of treatments. The guideline is based on pre-defined questions relevant for clinical care, a systematic review of the literature, and assessment of the evidence using the GRADE (Grading of Recommendations, Assessment, Development and Evaluation) approach. It focuses on clinical presentation, nasal nitric oxide, analysis of ciliary beat frequency and pattern by high-speed video-microscopy analysis, transmission electron microscopy, genotyping and immunofluorescence. It then used a modified Delphi survey to develop an algorithm for the use of diagnostic tests to definitively confirm and exclude the diagnosis of primary ciliary dyskinesia; and to provide advice when the diagnosis was not conclusive. Finally, this guideline proposes a set of quality criteria for future research on the validity of diagnostic methods for primary ciliary dyskinesia.


Asunto(s)
Cilios/ultraestructura , Síndrome de Kartagener/diagnóstico , Cilios/patología , Técnica Delphi , Diagnóstico Diferencial , Europa (Continente) , Técnica del Anticuerpo Fluorescente , Pruebas Genéticas , Humanos , Síndrome de Kartagener/genética , Microscopía Electrónica de Transmisión , Microscopía por Video , Óxido Nítrico/análisis , Literatura de Revisión como Asunto , Sociedades Médicas
9.
Eur Respir J ; 49(1)2017 01.
Artículo en Inglés | MEDLINE | ID: mdl-28052956

RESUMEN

Data on primary ciliary dyskinesia (PCD) epidemiology is scarce and published studies are characterised by low numbers. In the framework of the European Union project BESTCILIA we aimed to combine all available datasets in a retrospective international PCD cohort (iPCD Cohort).We identified eligible datasets by performing a systematic review of published studies containing clinical information on PCD, and by contacting members of past and current European Respiratory Society Task Forces on PCD. We compared the contents of the datasets, clarified definitions and pooled them in a standardised format.As of April 2016 the iPCD Cohort includes data on 3013 patients from 18 countries. It includes data on diagnostic evaluations, symptoms, lung function, growth and treatments. Longitudinal data are currently available for 542 patients. The extent of clinical details per patient varies between centres. More than 50% of patients have a definite PCD diagnosis based on recent guidelines. Children aged 10-19 years are the largest age group, followed by younger children (≤9 years) and young adults (20-29 years).This is the largest observational PCD dataset available to date. It will allow us to answer pertinent questions on clinical phenotype, disease severity, prognosis and effect of treatments, and to investigate genotype-phenotype correlations.


Asunto(s)
Síndrome de Kartagener/diagnóstico , Síndrome de Kartagener/fisiopatología , Adolescente , Adulto , Niño , Preescolar , Europa (Continente) , Femenino , Humanos , Lactante , Recién Nacido , Masculino , Metaanálisis como Asunto , Persona de Mediana Edad , Fenotipo , Pronóstico , Estudios Retrospectivos , Literatura de Revisión como Asunto , Índice de Severidad de la Enfermedad , Adulto Joven
10.
Qual Life Res ; 26(9): 2265-2285, 2017 09.
Artículo en Inglés | MEDLINE | ID: mdl-28361274

RESUMEN

BACKGROUND: Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by progressive sinopulmonary disease, with symptoms starting soon after birth. The aim of this study is to critically review, analyse, and synthesise the literature in order to understand the experiences of patients with primary ciliary dyskinesia (PCD) and the impact on health-related quality of life. METHOD: MEDLINE, EBSCO, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO and EMBASE were searched according to the inclusion criteria. A qualitative analysis of 14 studies was conducted. RESULTS: Fourteen studies were included in the review, five with qualitative methodologies. Studies originated from the UK, USA, Italy, Denmark and Belgium, one study included a survey distributed internationally. Significant relationships were found between age and worsening of respiratory symptoms, physical, and mental domains of health-related quality of life, with a greater decline compared with reference populations. Variations between the UK and Italy were found for health-related quality of life and its correlation with time since diagnosis. PCD was found to have a physical impact in all age groups: patients found it difficult to keep up with others, and found energy levels were easily depleted compared to family or peers. In terms of social impact, symptoms lead to embarrassment and a sense of isolation, with patients concealing symptoms and/or their diagnosis. In turn, isolation was also linked with the lack of public and medical knowledge. In relation to emotional impact, anxiety was reported in a number of qualitative studies; patients were anxious about getting sick or when thinking about their future health. The burden of treatment and factors influencing adherence were also discussed in depth. CONCLUSION: Health-related quality of life decreases with age in patients with PCD. For all age groups, PCD was found to greatly impact physical, emotional, social functioning, and treatment burden. More research is needed on the psychosocial impact of the illness, disease burden and its effect on quality of life.


Asunto(s)
Síndrome de Kartagener , Calidad de Vida/psicología , Adulto , Femenino , Humanos , Investigación Cualitativa , Encuestas y Cuestionarios
11.
Thorax ; 71(6): 560-1, 2016 06.
Artículo en Inglés | MEDLINE | ID: mdl-26896442

RESUMEN

Primary ciliary dyskinesia (PCD) is underdiagnosed and requires complex testing at specialist diagnostic centres. Measurement of nasal nitric oxide (nNO) has good sensitivity and specificity screening for PCD, but is currently usually measured at PCD centres rather than prior to referral. Proposals to include NO testing for asthma diagnoses could widen access to PCD screening if nasal mode analysers are available. Data from 282 consecutive referrals to our PCD diagnostic centre (31 PCD positive) were used to model predictive values for nNO testing with varying pretest probability and showed that predictive values were good in the referral population, but extending screening to more general populations would result in excessive false positives that may overwhelm diagnostic services. Although nNO remains a useful test, a 'normal' result with classical clinical history should still be considered for further testing.


Asunto(s)
Pruebas Respiratorias/métodos , Síndrome de Kartagener/diagnóstico , Óxido Nítrico/análisis , Adolescente , Adulto , Anciano , Niño , Diagnóstico Diferencial , Femenino , Humanos , Masculino , Persona de Mediana Edad , Valor Predictivo de las Pruebas , Sensibilidad y Especificidad , Reino Unido
12.
Eur Respir J ; 47(4): 1103-12, 2016 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-26917608

RESUMEN

Symptoms of primary ciliary dyskinesia (PCD) are nonspecific and guidance on whom to refer for testing is limited. Diagnostic tests for PCD are highly specialised, requiring expensive equipment and experienced PCD scientists. This study aims to develop a practical clinical diagnostic tool to identify patients requiring testing.Patients consecutively referred for testing were studied. Information readily obtained from patient history was correlated with diagnostic outcome. Using logistic regression, the predictive performance of the best model was tested by receiver operating characteristic curve analyses. The model was simplified into a practical tool (PICADAR) and externally validated in a second diagnostic centre.Of 641 referrals with a definitive diagnostic outcome, 75 (12%) were positive. PICADAR applies to patients with persistent wet cough and has seven predictive parameters: full-term gestation, neonatal chest symptoms, neonatal intensive care admittance, chronic rhinitis, ear symptoms, situs inversus and congenital cardiac defect. Sensitivity and specificity of the tool were 0.90 and 0.75 for a cut-off score of 5 points. Area under the curve for the internally and externally validated tool was 0.91 and 0.87, respectively.PICADAR represents a simple diagnostic clinical prediction rule with good accuracy and validity, ready for testing in respiratory centres referring to PCD centres.


Asunto(s)
Síndrome de Kartagener/diagnóstico , Adolescente , Adulto , Anciano , Algoritmos , Área Bajo la Curva , Niño , Preescolar , Femenino , Humanos , Lactante , Recién Nacido , Modelos Logísticos , Masculino , Persona de Mediana Edad , Prevalencia , Probabilidad , Curva ROC , Sensibilidad y Especificidad , Resultado del Tratamiento , Adulto Joven
13.
Eur Respir J ; 48(4): 1096-1107, 2016 10.
Artículo en Inglés | MEDLINE | ID: mdl-27492837

RESUMEN

Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by progressive sino-pulmonary disease, with symptoms starting soon after birth. A European Respiratory Society (ERS) Task Force aims to address disparities in diagnostics across Europe by providing evidence-based clinical practice guidelines. We aimed to identify challenges faced by patients when referred for PCD diagnostic testing.A patient survey was developed by patient representatives and healthcare specialists to capture experience. Online versions of the survey were translated into nine languages and completed in 25 countries. Of the respondents (n=365), 74% were PCD-positive, 5% PCD-negative and 21% PCD-uncertain/inconclusive. We then interviewed 20 parents/patients. Transcripts were analysed thematically.35% of respondents visited their doctor more than 40 times with PCD-related symptoms prior to diagnostic referral. Furthermore, the most prominent theme among interviewees was a lack of PCD awareness among medical practitioners and failure to take past history into account, leading to delayed diagnosis. Patients also highlighted the need for improved reporting of results and a solution to the "inconclusive" diagnostic status.These findings will be used to advise the ERS Task Force guidelines for diagnosing PCD, and should help stakeholders responsible for improving existing services and expanding provision for diagnosis of this rare disease.


Asunto(s)
Disparidades en Atención de Salud , Cooperación Internacional , Síndrome de Kartagener/diagnóstico , Síndrome de Kartagener/fisiopatología , Adolescente , Adulto , Anciano , Niño , Preescolar , Diagnóstico Tardío , Europa (Continente) , Medicina Basada en la Evidencia , Femenino , Humanos , Lactante , Lenguaje , Masculino , Persona de Mediana Edad , Guías de Práctica Clínica como Asunto , Prevalencia , Calidad de Vida , Resultado del Tratamiento , Adulto Joven
14.
Eur Respir J ; 47(3): 837-48, 2016 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-26647444

RESUMEN

Diagnosis of primary ciliary dyskinesia (PCD) lacks a "gold standard" test and is therefore based on combinations of tests including nasal nitric oxide (nNO), high-speed video microscopy analysis (HSVMA), genotyping and transmission electron microscopy (TEM). There are few published data on the accuracy of this approach.Using prospectively collected data from 654 consecutive patients referred for PCD diagnostics we calculated sensitivity and specificity for individual and combination testing strategies. Not all patients underwent all tests.HSVMA had excellent sensitivity and specificity (100% and 93%, respectively). TEM was 100% specific, but 21% of PCD patients had normal ultrastructure. nNO (30 nL·min(-1) cut-off) had good sensitivity and specificity (91% and 96%, respectively). Simultaneous testing using HSVMA and TEM was 100% sensitive and 92% specific.In conclusion, combination testing was found to be a highly accurate approach for diagnosing PCD. HSVMA alone has excellent accuracy, but requires significant expertise, and repeated sampling or cell culture is often needed. TEM alone is specific but misses 21% of cases. nNO (≤30 nL·min(-1)) contributes well to the diagnostic process. In isolation nNO screening at this cut-off would miss ∼10% of cases, but in combination with HSVMA could reduce unnecessary further testing. Standardisation of testing between centres is a future priority.


Asunto(s)
Pruebas Respiratorias/métodos , Pruebas Diagnósticas de Rutina/normas , Síndrome de Kartagener/diagnóstico , Óxido Nítrico/análisis , Adolescente , Adulto , Anciano , Niño , Preescolar , Femenino , Genotipo , Humanos , Lactante , Recién Nacido , Masculino , Microscopía Electrónica de Transmisión , Microscopía por Video , Persona de Mediana Edad , Curva ROC , Sensibilidad y Especificidad , Reino Unido , Adulto Joven
15.
J Adv Nurs ; 72(12): 3081-3092, 2016 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-27434204

RESUMEN

AIM: This study aimed to identify levels of depressive symptoms, social and personal college adjustment and peer support among nursing and midwifery students. BACKGROUND: Student mental health is of international concern, particularly among students who are undertaking professional qualifications in health care. DESIGN: Cross-sectional design. METHODS: Data were collected in 2013 using the Centre for Epidemiology Depressive Symptoms Scale, two subscales of the Student Adaptation to College Questionnaire; and a subscale of the Peer Support Evaluation Inventory with 417 students in Ireland. RESULTS: Findings indicated that 34% of participants experienced depressive symptoms, 20% were poorly personally adjusted and 9% poorly socially adjusted. Most students had good levels of peer support. Statistically significant relationships were found between all key variables. Students in their second year of study had significantly higher rates of depressive symptoms. Participants who reported having poor relationships with their fathers were at higher risk and had more difficulties personally and socially adjusting to university life and study. The alcohol consumption of participants had a statistically significant relationship with depressive symptoms with higher consumption rates having a positive impact on symptoms. CONCLUSION: The mental health of undergraduates undertaking professional healthcare studies needs to be a key research, educational and clinical priority. High rates of adjustment and mental health difficulties, particularly in the second year of the programme need to be examined and more effective interventions developed.


Asunto(s)
Depresión , Partería/educación , Estudiantes de Enfermería/psicología , Adulto , Estudios Transversales , Femenino , Humanos , Irlanda , Masculino , Embarazo , Estudiantes , Adulto Joven
16.
J Ment Health ; 25(5): 434-440, 2016 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-26732242

RESUMEN

BACKGROUND: Current mental health policy emphasises the importance of service user involvement in the delivery of care. Information Technology can have an effect on quality and efficiency of care. AIMS: The aim of this study is to gain the viewpoint of service users from a local mental health service in developing a mental health app. METHOD: A qualitative descriptive approach was used. Eight volunteers aged 18-49 years were interviewed with the aid of a semi-structured questionnaire. RESULTS: Interviewees defined a good app by its ease of use. Common themes included availability of contact information, identifying triggers, the ability to rate mood/anxiety levels on a scale, guided relaxation techniques, and the option to personalise the app. The researchers will aim to produce an app that is easily accessible, highly personalisable and will include functions highlighted as important (i.e. contact information, etc.). CONCLUSIONS: This research will assist in the development of an easy-to-use app that could increase access to services, and allow service users to take an active role in their care. In previous studies, apps were developed without the involvement of service users. This study recognises the important role of service users in this area.


Asunto(s)
Servicios de Salud Mental , Salud Mental , Aplicaciones Móviles , Teléfono Inteligente , Telemedicina/métodos , Adolescente , Adulto , Humanos , Persona de Mediana Edad , Aplicaciones Móviles/estadística & datos numéricos , Investigación Cualitativa , Teléfono Inteligente/estadística & datos numéricos , Telemedicina/estadística & datos numéricos , Adulto Joven
17.
Eur Respir J ; 46(2): 375-83, 2015 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-25976687

RESUMEN

Primary ciliary dyskinesia (PCD) is characterised by chronic suppurative lung disease, rhino-sinusitis, hearing impairment and sub-fertility. We have developed the first multidimensional measure to assess health-related quality of life (HRQoL) in adults with PCD (QOL-PCD).Following a literature review and expert panel meeting, open-ended interviews with patients investigated the impact of PCD on HRQoL in the UK and North America (n=21). Transcripts were content analysed to derive saturation matrices. Items were rated for relevance by patients (n=49). Saturation matrices, relevance scores, literature review, evaluation of existing measures, and expert opinion contributed to development of a preliminary questionnaire. The questionnaire was refined following cognitive interviews (n=18).Open-ended interviews identified a spectrum of issues unique to adults with PCD. Saturation matrices confirmed comprehensive coverage of content. QOL-PCD includes 48 items covering the following seven domains: Physical Functioning, Emotional Functioning, Treatment Burden, Respiratory and Sinus Symptoms, Ears and Hearing, Social Functioning, and Vitality and Health Perceptions. Cognitive testing confirmed that content was comprehensive and the items were well-understood by respondents.Content validity and cognitive testing supported the items and structure. QOL-PCD has been translated into other languages and is awaiting psychometric testing.


Asunto(s)
Síndrome de Kartagener/epidemiología , Síndrome de Kartagener/psicología , Psicometría/métodos , Calidad de Vida , Encuestas y Cuestionarios , Humanos , América del Norte , Reino Unido
18.
Health Hum Rights ; 26(1): 115-128, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38933218

RESUMEN

Managing residential care facilities (RCFs) includes the ability to manage adverse events while maintaining a human rights-based approach to care and support. Literature investigating rights-based approaches in RCFs is scarce; therefore, an investigation of the current approach in RCFs will inform improvements. This study sought to identify whether RCFs in Ireland upheld a rights-based approach during the course of adverse events by analyzing notifications of adverse events from 2021 taken from the Database of Statutory Notifications from Social Care in Ireland. Data analysis was conducted independently by two researchers. Notifications of adverse events were coded according to whether the human rights principles of fairness, respect, equality, dignity, and autonomy were upheld or violated during the adverse event and its subsequent management. There was some evidence of violations, including staff violations during adverse events and their management, as well as residents violating fellow residents' autonomy, respect, and dignity in notifications of "serious injury" and "allegations of abuse." However, overall, good practice was identified, with residents' human rights upheld by staff. Our findings indicate that a rights-based approach to care and support is being upheld during adverse events and their management, which may indicate that such an approach to care and support has been adopted.


Asunto(s)
Derechos Humanos , Instituciones Residenciales , Humanos , Irlanda , Autonomía Personal , Seguridad del Paciente
19.
HRB Open Res ; 6: 66, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38384972

RESUMEN

Background: Evidence indicates that the reporting of serious injury in long-term residential care has increased substantially over the past decade. However, what constitutes a serious injury in residential care is poorly and inconsistently defined. This may result in incidences being unnecessarily reported as a serious injury. It is therefore, crucial to develop a consistent definition of serious injury to reduce reporting burden and to facilitate comparison between different residential care settings and across jurisdictions. This protocol describes the methods for a systematic review of existing definitions from the literature to inform the development of a consistent definition of serious injury in long-term residential care. Methods: A wide range of published peer-reviewed and grey literature will be sought for this review, including guidance and policy documents. Searches will be conducted of databases including MEDLINE, CINAHL, SocINDEX, Academic Search Ultimate, and Westlaw International. Grey literature database searches will include Trip and Social Care Online. Country specific searches of government and health and social care websites will be conducted. Quality appraisal will be facilitated using the Quality Assessment for Diverse Studies (QuADS) tool and Tyndall's checklist. The level of confidence in the findings will be assessed using the GRADE CERQual approach. A customised data extraction form will be used to extract data to reduce the risk of bias. Conceptual content analysis of data will facilitate identification of definitions of serious injury and their frequency within texts. Conclusions: The findings will inform the development of a consistent definition of serious injury in long-term residential care that will reduce reporting burden, facilitate the accuracy of data collected and allow for comparison across jurisdictions. A more universal and consistent definition will enable regulators, policy makers, service providers and researchers to develop policy and practical interventions to prevent the occurrence of serious injury in long-term residential care.

20.
BMJ Open ; 13(5): e065745, 2023 05 05.
Artículo en Inglés | MEDLINE | ID: mdl-37147100

RESUMEN

OBJECTIVES: To determine incidence of death in residential care facilities for people with disability in Ireland, primary cause of death, associations of facility characteristics and deaths, and to compare characteristics of deaths reported as expected and unexpected. DESIGN: Descriptive cross-sectional study. SETTING: All residential care facilities for people with disability operational in Ireland in 2019 and 2020 (n=1356). PARTICIPANTS: n=9483 beds. MAIN OUTCOME MEASURES: All expected and unexpected deaths notified to the social services regulator. Cause of death as reported by the facility. RESULTS: 395 death notifications were received in 2019 (n=189) and 2020 (n=206). 45% (n=178) were for unexpected deaths. Incidence of death per 1000 beds per year was 20.83 for all, 11.44 for expected and 9.39 for unexpected deaths. Respiratory disease was the most common cause of death, accounting for 38% (n=151) of all deaths. In adjusted negative binomial regression analysis, congregated settings versus non-congregated (incidence rate ratio (95% CI): 2.59 (1.80 to 3.73)) and higher bed numbers (highest vs lowest quartile) (4.02 (2.19 to 7.40)) were positively associated with mortality. There was also a positive n-shaped association with category of nursing staff-to-resident ratio when compared with zero nurses. Emergency services were contacted for 6% of expected deaths. Of the deaths reported as unexpected, 29% were receiving palliative care and 10.8% had a terminal illness. CONCLUSION: Although incidence of death was low, residents of congregated and larger settings had higher incidence of death than residents of other settings. This should be a consideration for practice and policy. Given the high contribution of respiratory diseases to deaths and the potential avoidability of these, there is a need for improved respiratory health management in this population. Nearly half of all deaths were reported as unexpected; however, overlap in the characteristics of expected and unexpected deaths highlights the need for clearer definitions.


Asunto(s)
Instituciones de Vida Asistida , Personas con Discapacidad , Humanos , Estudios Transversales , Irlanda/epidemiología , Muerte Súbita , Instituciones Residenciales
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