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1.
J Adv Nurs ; 2024 Jul 07.
Artigo em Inglês | MEDLINE | ID: mdl-38973250

RESUMO

AIM: To explore Australian and New Zealand nursing and midwifery educators' planetary health knowledge, views, confidence and teaching practices. DESIGN: A cross-sectional survey design. METHODS: An online survey was sent to Australian and New Zealand nursing and midwifery educators across the 45 Schools of Nursing and Midwifery between July and September 2023. The online survey consisted of 29 open- and closed-ended questions about nursing and midwifery educators' planetary health knowledge, views, confidence and teaching practices. RESULTS: There was a total of 127 responses to the first open-ended question. A total of 97 nursing and midwifery educators then completed the remaining questions. While educators had mostly positive views about integrating planetary health into their teaching, they lacked the knowledge and/or confidence to do so effectively. CONCLUSION: Australian and New Zealand nursing and midwifery educators acknowledge that planetary health should be included in nursing and midwifery curricula, but most reported a deficit in knowledge and/or confidence to integrate these complex concepts into their teaching. When considering planetary health, most educators focussed on climate change, which demonstrates their limited understanding of the concept of planetary health. IMPLICATIONS FOR THE PROFESSION: All nurses and midwives need to understand how the health of the planet and human civilization are interconnected and be prepared to address complex global health challenges now and in the future. Across the world, key healthcare organizations have called upon nursing and midwifery educators to prepare the healthcare workforce to practice in a more sustainable way, including supporting decarbonization of healthcare. However, our study has demonstrated that nursing and midwifery educators do not feel ready to respond due to a lack of required knowledge and/or confidence. REPORTING METHOD: We used the Consensus-Based Checklist for Reporting of Survey Studies (CROSS). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

2.
J Adv Nurs ; 2024 Jun 07.
Artigo em Inglês | MEDLINE | ID: mdl-38847480

RESUMO

AIM: To achieve consensus on the knowledge and skills that undergraduate/pre-licensure nursing students require to steward healthcare towards a more sustainable future. DESIGN: A two-phase real-time Delphi study. METHODS: Phase 1 included the generation of Planetary Health, climate change and sustainability knowledge and skill statements based on a review of relevant literature. Phase 2 consisted of a real-time Delphi survey designed to seek consensus on the proposed statements from a panel of 42 international experts. RESULTS: Of the 49 survey statements, 44 (90%) achieved ≥75% consensus and 26 (53%) achieved ≥80% consensus. Three were removed and 32 were modified to improve clarity of language. CONCLUSION: The knowledge and skills statements that emerged through this Delphi study can serve as a guide for incorporating Planetary Health, climate change and sustainability into nursing education programs. IMPLICATIONS FOR THE PROFESSION: Incorporating Planetary Health and climate change education into nursing programs has the potential to produce more environmentally conscious and socially responsible nurses. IMPACT: The absence of consensus on the essential knowledge and skills expected of nursing students has hindered the advancement of curricula and impacted educators' confidence in teaching Planetary Health and climate change. This study has resulted in a meticulously crafted framework of knowledge and skill statements that will be beneficial to educators, the future nursing workforce, and, ultimately, the individuals and communities whom nurses serve. REPORTING METHOD: This paper adheres to the Conducting and REporting DElphi Studies (CREDES) reporting guideline. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

3.
Hum Brain Mapp ; 44(4): 1579-1592, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36440953

RESUMO

This study aimed to investigate the influence of stroke lesions in predefined highly interconnected (rich-club) brain regions on functional outcome post-stroke, determine their spatial specificity and explore the effects of biological sex on their relevance. We analyzed MRI data recorded at index stroke and ~3-months modified Rankin Scale (mRS) data from patients with acute ischemic stroke enrolled in the multisite MRI-GENIE study. Spatially normalized structural stroke lesions were parcellated into 108 atlas-defined bilateral (sub)cortical brain regions. Unfavorable outcome (mRS > 2) was modeled in a Bayesian logistic regression framework. Effects of individual brain regions were captured as two compound effects for (i) six bilateral rich club and (ii) all further non-rich club regions. In spatial specificity analyses, we randomized the split into "rich club" and "non-rich club" regions and compared the effect of the actual rich club regions to the distribution of effects from 1000 combinations of six random regions. In sex-specific analyses, we introduced an additional hierarchical level in our model structure to compare male and female-specific rich club effects. A total of 822 patients (age: 64.7[15.0], 39% women) were analyzed. Rich club regions had substantial relevance in explaining unfavorable functional outcome (mean of posterior distribution: 0.08, area under the curve: 0.8). In particular, the rich club-combination had a higher relevance than 98.4% of random constellations. Rich club regions were substantially more important in explaining long-term outcome in women than in men. All in all, lesions in rich club regions were associated with increased odds of unfavorable outcome. These effects were spatially specific and more pronounced in women.


Assuntos
AVC Isquêmico , Acidente Vascular Cerebral , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Teorema de Bayes , Encéfalo , AVC Isquêmico/diagnóstico por imagem , AVC Isquêmico/patologia , Modelos Neurológicos
4.
Aging Clin Exp Res ; 34(10): 2457-2463, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-35796976

RESUMO

BACKGROUND: Fatigue is a common and often debilitating symptom experienced by many stroke survivors. Significant post stroke fatigue may predispose individuals to other health complications, such as falls, which can lead to fractures and soft tissue injuries. Only limited research has examined the association between fatigue and falls in stroke survivors. METHODS: Data were obtained from the Sax Institute's 45 and Up Study, from a subset of individuals who had experienced a stroke. The Modified Fatigue Impact Scale-5-item version (MFIS-5) was used to measure the level of fatigue. A logistic regression model, adjusted for stroke characteristics and comorbidities, was used to determine the magnitude of association between change in fatigue score and odds of having had a fall. RESULTS: A total of 576 participants completed the questionnaire. A total of 214 (37.2%) participants reported having had a fall in the previous 12 months. There was a statistically significant association between fatigue scores and fall status (p < 0.001). Specifically, for every 1-point increase in the fatigue score (MFIS-5) (i.e. higher level of fatigue), the odds of a person having a fall is 1.10 times greater (AOR = 1.10; 95% CI 1.05, 1.15; p < 0.001). CONCLUSION: This study revealed an association between an increasing risk of falls with increasing severity of post stroke fatigue. Accurate detection and management of fatigue may help reduce the risk of falls and should be the focus of future research.


Assuntos
Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Humanos , Pessoa de Meia-Idade , Idoso , Acidentes por Quedas , Austrália , Reabilitação do Acidente Vascular Cerebral/efeitos adversos , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/epidemiologia , Sobreviventes , Fadiga/complicações
5.
J Stroke Cerebrovasc Dis ; 31(7): 106543, 2022 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-35525062

RESUMO

BACKGROUND: Stroke is a common cause of mortality and morbidity which affects approximately 17 million people globally each year. Common symptoms associated with stroke are physical disabilities, impaired cognitive functions, depression, and fatigue, all of which can significantly impact health-related quality of life (HRQoL). To date, no research has explored the inter-relationship among fatigue, disability, depression, health-related hardiness, and quality of life in stroke survivors. METHODS: Data was obtained from a sub-study of the 45 and Up Study; including 576 Australian adults who had been diagnosed with a stroke. The cross-sectional questionnaire obtained demographic and health status information, as well as clinical measures and stroke-related measures. Associations among fatigue and disability, depression, health-related hardiness and quality of life were analysed using a linear regression model. RESULTS: In comparison to those participants with no stroke-related disability, those with slight (ß = 1.141; p = 0.008), moderate (ß = 3.250; p < 0.001) or severe (ß = 3.526; p < 0.001) disability had significantly higher fatigue scores. For every one unit increase in the depression score, the fatigue score increased by 1.502 points (p < 0.001). For every one unit increase in the health-related hardiness score, the fatigue score decreased by 0.054 points (p = 0.044). For every one unit increase in the quality of life score, the fatigue score decreased by 0.068 points (p < 0.001). CONCLUSION: This study found significant associations among fatigue and disability, depression, health-related hardiness, and quality of life in stroke survivors. Accurate detection and management of fatigue may help improve the rehabilitation of stroke survivors.


Assuntos
Qualidade de Vida , Acidente Vascular Cerebral , Adulto , Austrália , Estudos Transversais , Depressão/psicologia , Fadiga/diagnóstico , Fadiga/etiologia , Fadiga/psicologia , Humanos , Qualidade de Vida/psicologia , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/terapia
6.
Genet Med ; 23(7): 1356-1365, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33824503

RESUMO

PURPOSE: Widespread, quality genomics education for health professionals is required to create a competent genomic workforce. A lack of standards for reporting genomics education and evaluation limits the evidence base for replication and comparison. We therefore undertook a consensus process to develop a recommended minimum set of information to support consistent reporting of design, development, delivery, and evaluation of genomics education interventions. METHODS: Draft standards were derived from literature (25 items from 21 publications). Thirty-six international experts were purposively recruited for three rounds of a modified Delphi process to reach consensus on relevance, clarity, comprehensiveness, utility, and design. RESULTS: The final standards include 18 items relating to development and delivery of genomics education interventions, 12 relating to evaluation, and 1 on stakeholder engagement. CONCLUSION: These Reporting Item Standards for Education and its Evaluation in Genomics (RISE2 Genomics) are intended to be widely applicable across settings and health professions. Their use by those involved in reporting genomics education interventions and evaluation, as well as adoption by journals and policy makers as the expected standard, will support greater transparency, consistency, and comprehensiveness of reporting. Consequently, the genomics education evidence base will be more robust, enabling high-quality education and evaluation across diverse settings.


Assuntos
Genômica , Relatório de Pesquisa , Consenso , Técnica Delphi , Humanos , Participação dos Interessados
7.
Circ Res ; 124(1): 114-120, 2019 01 04.
Artigo em Inglês | MEDLINE | ID: mdl-30582445

RESUMO

RATIONALE: Ischemic stroke is among the leading causes of adult disability. Part of the variability in functional outcome after stroke has been attributed to genetic factors but no locus has been consistently associated with stroke outcome. OBJECTIVE: Our aim was to identify genetic loci influencing the recovery process using accurate phenotyping to produce the largest GWAS (genome-wide association study) in ischemic stroke recovery to date. METHODS AND RESULTS: A 12-cohort, 2-phase (discovery-replication and joint) meta-analysis of GWAS included anterior-territory and previously independent ischemic stroke cases. Functional outcome was recorded using 3-month modified Rankin Scale. Analyses were adjusted for confounders such as discharge National Institutes of Health Stroke Scale. A gene-based burden test was performed. The discovery phase (n=1225) was followed by open (n=2482) and stringent joint-analyses (n=1791). Those cohorts with modified Rankin Scale recorded at time points other than 3-month or incomplete data on previous functional status were excluded in the stringent analyses. Novel variants in PATJ (Pals1-associated tight junction) gene were associated with worse functional outcome at 3-month after stroke. The top variant was rs76221407 (G allele, ß=0.40, P=1.70×10-9). CONCLUSIONS: Our results identify a set of common variants in PATJ gene associated with 3-month functional outcome at genome-wide significance level. Future studies should examine the role of PATJ in stroke recovery and consider stringent phenotyping to enrich the information captured to unveil additional stroke outcome loci.


Assuntos
Isquemia Encefálica/genética , Polimorfismo de Nucleotídeo Único , Acidente Vascular Cerebral/genética , Proteínas de Junções Íntimas/genética , Isquemia Encefálica/diagnóstico , Isquemia Encefálica/fisiopatologia , Isquemia Encefálica/reabilitação , Avaliação da Deficiência , Frequência do Gene , Predisposição Genética para Doença , Estudo de Associação Genômica Ampla , Humanos , Fenótipo , Recuperação de Função Fisiológica , Fatores de Risco , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/fisiopatologia , Acidente Vascular Cerebral/terapia , Reabilitação do Acidente Vascular Cerebral , Resultado do Tratamento
8.
Int J Qual Health Care ; 33(4)2021 Oct 20.
Artigo em Inglês | MEDLINE | ID: mdl-34613386

RESUMO

BACKGROUND: Clinical registry participation is a measure of healthcare quality. Limited knowledge exists on Australian hospitals' participation in clinical registries and whether this registry data informs quality improvement initiatives. OBJECTIVE: To identify participation in clinical registries, determine if registry data inform quality improvement initiatives, and identify registry participation enablers and clinicians' educational needs to improve use of registry data to drive practice change. METHODS: A self-administered survey was distributed to staff coordinating registries in seven hospitals in New South Wales, Australia. Eligible registries were international-, national- and state-based clinical, condition-/disease-specific and device/product registries. RESULTS: Response rate was 70% (97/139). Sixty-two (64%) respondents contributed data to 46 eligible registries. Registry reports were most often received by nurses (61%) and infrequently by hospital executives (8.4%). Less than half used registry data 'always' or 'often' to influence practice improvement (48%) and care pathways (49%). Protected time for data collection (87%) and benchmarking (79%) were 'very likely' or 'likely' to promote continued participation. Over half 'strongly agreed' or 'agreed' that clinical practice improvement training (79%) and evidence-practice gap identification (77%) would optimize use of registry data. CONCLUSIONS: Registry data are generally only visible to local speciality units and not routinely used to inform quality improvement. Centralized on-going registry funding, accessible and transparent integrated information systems combined with data informed improvement science education could be first steps to promote quality data-driven clinical improvement initiatives.


Assuntos
Melhoria de Qualidade , Dados de Saúde Coletados Rotineiramente , Austrália , Estudos Transversais , Humanos , Sistema de Registros , Inquéritos e Questionários
9.
J Adv Nurs ; 76(11): 3136-3146, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32840891

RESUMO

AIM: To describe a randomized controlled trial protocol that will evaluate the effectiveness of two web-based genomic nursing education interventions. BACKGROUND: Preparing future nurses to be competent in genetic and genomic concepts is fundamental to ensure appropriate clinical application. However, genetics-genomics concepts are still new in the field of nursing. Little is known about what type and kind of web-based nursing education is effective in improving the knowledge of nursing students. To address these knowledge gaps, a web-based 'Genomic Nursing Education Intervention' will be developed and compared with an existing online education programme. DESIGN: A randomized controlled trial of two groups with pre-test and repeated posttesting. METHODS: The Genomic Nursing Concept Inventory, a validated tool, will be used to assess the genetics-genomics knowledge of nursing students. Participants will be randomly allocated to either a control or an intervention group. The control group will receive the standard web-based nursing education, while the intervention group will receive a newly developed web-based education intervention. Outcome measures include the students' knowledge level of nursing genetics-genomics concepts. Participants will be retested at 3 and 6 months. CONCLUSION: Current evidence shows that ensuring nurses have adequate education in genetic-genomic concepts is challenging. This study will demonstrate which of two web-based nursing education methods is more effective in teaching genetic-genomic concepts. This research project will better prepare the nursing profession in their careers for the emerging advance technologies in genetics-genomics and personalized health care. IMPACT: Current evidence shows major challenges in ensuring that nurses have adequate education in genetics-genomics concepts. Less is known about what approaches to web-based education are effective to improve the knowledge gaps of nursing students in genetics-genomics concepts. This study will determine which type of web-based nursing education is effective in improving the genetics-genomics knowledge of nursing students. This research project will help better prepare nurses in dealing with advances in genetics-genomics in their careers. TRIAL REGISTRATION:  This study is registered in ClinicalTrials.gov (ID number NCT03963687) https://clinicaltrials.gov/show/NCT03963687.


Assuntos
Bacharelado em Enfermagem , Educação em Enfermagem , Estudantes de Enfermagem , Genômica/educação , Humanos , Internet , Ensaios Clínicos Controlados Aleatórios como Assunto
10.
Stroke ; 50(8): 2219-2222, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31238828

RESUMO

Background and Purpose- Psychosocial factors can have implications for ischemic stroke risk and recovery. This study investigated the effect of genetically determined risk of depression on these outcomes using the Mendelian randomization (MR) framework. Methods- Genetic instruments for risk of depression were identified in a discovery genome-wide association study of 246 363 cases and 561 190 controls and further replicated in a separate population of 474 574 cases and 1 032 579 controls. Corresponding genetic association estimates for risk of ischemic stroke were taken from 60 341 cases and 454 450 controls, with those for functional outcome 3 months after ischemic stroke taken from an analysis of 6021 patients. Following statistical power calculation, inverse-variance weighted MR was performed to pool estimates across different instruments. The Cochran Q heterogeneity test, weighted median MR, and MR pleiotropy residual sum and outlier were used to explore possible bias relating to inclusion of pleiotropic variants. Results- There was no MR evidence for an effect of genetically determined risk of depression on ischemic stroke risk. Although suffering low statistical power, the main inverse-variance weighted MR analysis was suggestive of a detrimental effect of genetically determined risk of depression on functional outcome after ischemic stroke (odds ratio of poor outcome [modified Rankin Scale, ≥3] per 1-SD increase in genetically determined risk of depression, 1.81; 95% CI, 0.98-3.35; P=0.06). There was no evidence of heterogeneity between MR estimates produced by different instruments (Q P=0.26). Comparable MR estimates were obtained with weighted median MR (odds ratio, 2.57; 95% CI, 1.05-6.25; P=0.04) and MR pleiotropy residual sum and outlier (odds ratio, 1.81; 95% CI, 0.95-3.46; P=0.08). Conclusions- We found no MR evidence of genetically determined risk of depression affecting ischemic stroke risk but did find consistent MR evidence suggestive of a possible effect on functional outcome after ischemic stroke. Given the widespread prevalence of depression-related morbidity, these findings could have implications for prognostication and personalized rehabilitation after stroke.


Assuntos
Isquemia Encefálica/complicações , Depressão/etiologia , Transtorno Depressivo/etiologia , Predisposição Genética para Doença , Polimorfismo de Nucleotídeo Único , Recuperação de Função Fisiológica/genética , Acidente Vascular Cerebral/complicações , Depressão/genética , Transtorno Depressivo/genética , Estudo de Associação Genômica Ampla , Humanos
11.
Stroke ; 50(2): 298-304, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30661490

RESUMO

Background and Purpose- We sought to explore the effect of genetic imbalance on functional outcome after ischemic stroke (IS). Methods- Copy number variation was identified in high-density single-nucleotide polymorphism microarray data of IS patients from the CADISP (Cervical Artery Dissection and Ischemic Stroke Patients) and SiGN (Stroke Genetics Network)/GISCOME (Genetics of Ischaemic Stroke Functional Outcome) networks. Genetic imbalance, defined as total number of protein-coding genes affected by copy number variations in an individual, was compared between patients with favorable (modified Rankin Scale score of 0-2) and unfavorable (modified Rankin Scale score of ≥3) outcome after 3 months. Subgroup analyses were confined to patients with imbalance affecting ohnologs-a class of dose-sensitive genes, or to those with imbalance not affecting ohnologs. The association of imbalance with outcome was analyzed by logistic regression analysis, adjusted for age, sex, stroke subtype, stroke severity, and ancestry. Results- The study sample comprised 816 CADISP patients (age 44.2±10.3 years) and 2498 SiGN/GISCOME patients (age 67.7±14.2 years). Outcome was unfavorable in 122 CADISP and 889 SiGN/GISCOME patients. Multivariate logistic regression analysis revealed that increased genetic imbalance was associated with less favorable outcome in both samples (CADISP: P=0.0007; odds ratio=0.89; 95% CI, 0.82-0.95 and SiGN/GISCOME: P=0.0036; odds ratio=0.94; 95% CI, 0.91-0.98). The association was independent of age, sex, stroke severity on admission, stroke subtype, and ancestry. On subgroup analysis, imbalance affecting ohnologs was associated with outcome (CADISP: odds ratio=0.88; 95% CI, 0.80-0.95 and SiGN/GISCOME: odds ratio=0.93; 95% CI, 0.89-0.98) whereas imbalance without ohnologs lacked such an association. Conclusions- Increased genetic imbalance was associated with poorer functional outcome after IS in both study populations. Subgroup analysis revealed that this association was driven by presence of ohnologs in the respective copy number variations, suggesting a causal role of the deleterious effects of genetic imbalance.


Assuntos
Isquemia Encefálica/genética , Dosagem de Genes , Adulto , Idoso , Isquemia Encefálica/reabilitação , Cromossomos Humanos/genética , Seguimentos , Duplicação Gênica , Genótipo , Humanos , Pessoa de Meia-Idade , Polimorfismo de Nucleotídeo Único , Recuperação de Função Fisiológica , Índice de Gravidade de Doença
12.
Stroke ; 50(7): 1734-1741, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31177973

RESUMO

Background and Purpose- We evaluated deep learning algorithms' segmentation of acute ischemic lesions on heterogeneous multi-center clinical diffusion-weighted magnetic resonance imaging (MRI) data sets and explored the potential role of this tool for phenotyping acute ischemic stroke. Methods- Ischemic stroke data sets from the MRI-GENIE (MRI-Genetics Interface Exploration) repository consisting of 12 international genetic research centers were retrospectively analyzed using an automated deep learning segmentation algorithm consisting of an ensemble of 3-dimensional convolutional neural networks. Three ensembles were trained using data from the following: (1) 267 patients from an independent single-center cohort, (2) 267 patients from MRI-GENIE, and (3) mixture of (1) and (2). The algorithms' performances were compared against manual outlines from a separate 383 patient subset from MRI-GENIE. Univariable and multivariable logistic regression with respect to demographics, stroke subtypes, and vascular risk factors were performed to identify phenotypes associated with large acute diffusion-weighted MRI volumes and greater stroke severity in 2770 MRI-GENIE patients. Stroke topography was investigated. Results- The ensemble consisting of a mixture of MRI-GENIE and single-center convolutional neural networks performed best. Subset analysis comparing automated and manual lesion volumes in 383 patients found excellent correlation (ρ=0.92; P<0.0001). Median (interquartile range) diffusion-weighted MRI lesion volumes from 2770 patients were 3.7 cm3 (0.9-16.6 cm3). Patients with small artery occlusion stroke subtype had smaller lesion volumes ( P<0.0001) and different topography compared with other stroke subtypes. Conclusions- Automated accurate clinical diffusion-weighted MRI lesion segmentation using deep learning algorithms trained with multi-center and diverse data is feasible. Both lesion volume and topography can provide insight into stroke subtypes with sufficient sample size from big heterogeneous multi-center clinical imaging phenotype data sets.


Assuntos
Isquemia Encefálica/diagnóstico por imagem , Imagem de Difusão por Ressonância Magnética/métodos , Acidente Vascular Cerebral/diagnóstico por imagem , Adulto , Idoso , Idoso de 80 Anos ou mais , Algoritmos , Big Data , Isquemia Encefálica/epidemiologia , Feminino , Humanos , Processamento de Imagem Assistida por Computador , Aprendizado de Máquina , Masculino , Pessoa de Meia-Idade , Redes Neurais de Computação , Variações Dependentes do Observador , Fenótipo , Estudos Retrospectivos , Fatores de Risco , Fatores Socioeconômicos , Acidente Vascular Cerebral/epidemiologia
13.
J Clin Nurs ; 27(7-8): e1549-e1560, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29399910

RESUMO

AIMS AND OBJECTIVES: This study aimed to identify and describe the experience of parents of children diagnosed with early onset scoliosis living in Australia. BACKGROUND: Chronic childhood disease has a major impact on health-related quality of life. Caring for a child with a chronic illness is well documented but the specific experiences of parents who care for children with early onset scoliosis, a rare but devastating illness, has not been explored. Numerous studies have described the interrelated psychological, financial, social, physical and logistical factors that impact the experience of the caregiver role with various diseases, but in the case of early onset scoliosis, limited studies have been conducted about the parental experience. METHODS: A qualitative descriptive design was used. A snowball sampling technique assisted in the recruitment. Parents invited to the study included mothers, fathers and guardians. Data were collected through semistructured interviews and transcribed verbatim. Transcripts were analysed thematically. Data collection complied with the Consolidated criteria for reporting qualitative research guidelines. FINDINGS: Twelve mothers of children with early onset scoliosis were interviewed, as only mothers consented to participate. Four major themes emerged: emotional rollercoaster ride, a lack of resources, money talks and pervasive burden. Factors that impacted on the participants' ability to confront, manage and endure caring for a child with early onset scoliosis emerged from the data. CONCLUSION: The findings suggest there are multiple factors that influence the experience of mothers' caring for a child with early onset scoliosis. The recognition and appropriate management of these factors by healthcare professionals have the potential to improve the quality of life of parents who care for a child with early onset scoliosis. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals have first-line contact with parents of children with early onset scoliosis and are well placed to provide parents with evidence-based education and increased support.


Assuntos
Cuidadores/psicologia , Doença Crônica/psicologia , Pai/psicologia , Mães/psicologia , Qualidade de Vida/psicologia , Escoliose/enfermagem , Escoliose/psicologia , Adulto , Austrália , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Apoio Social
14.
J Clin Nurs ; 27(7-8): 1381-1398, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29569286

RESUMO

AIMS AND OBJECTIVES: To explore and present findings of qualitative studies exploring real-life experiences of people with transient ischaemic attack or minor stroke. BACKGROUND: Transient ischaemic attack and minor stroke significantly increase the risk of stroke. Primarily, literature has examined healthcare pathways, patient outcomes and models of care through quantitative methodologies. Several studies have explored patient experiences using qualitative approaches. However, these findings have not been systematically collated or critically appraised to better understand the experiences of this population. DESIGN: A literature review of the qualitative evidence. METHOD: A systematic literature search was conducted in CINAHL, MEDLINE, EMBASE and PsycINFO between January 2005-October 2016 to identify qualitative studies that explored real-life experiences of people with transient ischaemic attack or minor stroke. The relevant EQUATOR guidelines were followed. Findings of relevant studies were critically appraised and collated using a thematic approach. RESULTS: The search retrieved 709 articles. Twelve articles were included after critical review. Three themes emerged including recognition, awareness and action; the vulnerable self; and social and personal life change. Participants experienced ongoing vulnerability and change in their personal and social lives. Specifically, people believed that their condition did not reflect their physical appearance and led to their needs being unmet by health professionals. CONCLUSIONS: This is the first review of the literature to collate the thoughts, perspectives and experiences of people living with transient ischaemic attack or minor stroke. They reveal a complex, life-altering experience characterised by vulnerability, instability and change. Education that assists clinicians to connect with these experiences may alleviate the patient-reported disconnection with health professionals. RELEVANCE TO CLINICAL PRACTICE: Physical and psychosocial dysfunctions were consistently reported to be overlooked or undetected by clinicians. Educating clinicians might enable them to better understand patient experiences, improve therapeutic interactions and meet the needs of this population.


Assuntos
Ataque Isquêmico Transitório/psicologia , Relações Profissional-Paciente , Acidente Vascular Cerebral/psicologia , Atitude do Pessoal de Saúde , Feminino , Humanos , Ataque Isquêmico Transitório/terapia , Masculino , Satisfação do Paciente , Pesquisa Qualitativa , Acidente Vascular Cerebral/terapia
15.
PLoS Genet ; 10(7): e1004469, 2014 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-25078452

RESUMO

Genome-wide association studies (GWAS) have begun to identify the common genetic component to ischaemic stroke (IS). However, IS has considerable phenotypic heterogeneity. Where clinical covariates explain a large fraction of disease risk, covariate informed designs can increase power to detect associations. As prevalence rates in IS are markedly affected by age, and younger onset cases may have higher genetic predisposition, we investigated whether an age-at-onset informed approach could detect novel associations with IS and its subtypes; cardioembolic (CE), large artery atherosclerosis (LAA) and small vessel disease (SVD) in 6,778 cases of European ancestry and 12,095 ancestry-matched controls. Regression analysis to identify SNP associations was performed on posterior liabilities after conditioning on age-at-onset and affection status. We sought further evidence of an association with LAA in 1,881 cases and 50,817 controls, and examined mRNA expression levels of the nearby genes in atherosclerotic carotid artery plaques. Secondly, we performed permutation analyses to evaluate the extent to which age-at-onset informed analysis improves significance for novel loci. We identified a novel association with an MMP12 locus in LAA (rs660599; p = 2.5×10⁻7), with independent replication in a second population (p = 0.0048, OR(95% CI) = 1.18(1.05-1.32); meta-analysis p = 2.6×10⁻8). The nearby gene, MMP12, was significantly overexpressed in carotid plaques compared to atherosclerosis-free control arteries (p = 1.2×10⁻¹5; fold change = 335.6). Permutation analyses demonstrated improved significance for associations when accounting for age-at-onset in all four stroke phenotypes (p<0.001). Our results show that a covariate-informed design, by adjusting for age-at-onset of stroke, can detect variants not identified by conventional GWAS.


Assuntos
Idade de Início , Doença da Artéria Coronariana/genética , Metaloproteinase 12 da Matriz/genética , Infarto do Miocárdio/genética , Adulto , Idoso , Artérias/patologia , Doença da Artéria Coronariana/classificação , Doença da Artéria Coronariana/fisiopatologia , Feminino , Estudo de Associação Genômica Ampla , Glicosaminoglicanos/genética , Humanos , Masculino , Pessoa de Meia-Idade , Infarto do Miocárdio/fisiopatologia , Polimorfismo de Nucleotídeo Único
16.
Scand J Caring Sci ; 31(1): 6-26, 2017 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-27440375

RESUMO

BACKGROUND: The incidence of cardiac arrest and cardiopulmonary resuscitation continues to increase worldwide largely due to greater awareness of the symptoms of cardiac events and increased attention to cardiopulmonary resuscitation training in the community. Globally, predicted survival rates after cardiopulmonary resuscitation have remained at 10% for decades and although patient outcome remains unpredictable, there is a positive trend in life expectancy. For a resuscitation attempt to be classed as successful, not only survival but also quality of life has to be evaluated. AIM: The aim of this review was to examine literature that explores the quality of life (QOL) for survivors' after CPR and the influence cognitive impairment, anxiety, depression and post-traumatic stress disorder (PTSD) has had on their QOL. REVIEW METHODS: This review follows Whittemore and Knafl's framework for an integrative literature review. Electronic databases EBSCO, Ovid, PubMed and EMBASE were searched. After application of the inclusion and exclusion criteria, thirty-six papers published from January 2000 to June 2015 were included in this review. RESULTS: These papers represent a broad spectrum of research evaluating quality of life for survivors of cardiopulmonary resuscitation. The heterogeneous research methods and vast number of different research tools make it challenging to compare the findings. The majority of papers concluded that quality of life for survivors of cardiac arrest and cardiopulmonary resuscitation was generally acceptable. However, studies also described survivors' experience of anxiety, depression, post-traumatic stress and cognitive dysfunction. CONCLUSION: A majority of papers reported an acceptable quality of life if the patient survived to hospital discharge. The heterogeneity in quantitative papers was noticeable and indicates a marked variance in patient outcomes. This review highlights the absence of specialized tools used to investigate survivors' experience of the event. Further exploration of the impact cardiopulmonary resuscitation has on the individual may improve ongoing rehabilitation and quality of life levels for survivors.


Assuntos
Reanimação Cardiopulmonar/psicologia , Parada Cardíaca/terapia , Qualidade de Vida/psicologia , Sobreviventes/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Análise de Sobrevida
17.
Aust J Prim Health ; 23(2): 162-169, 2017 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-28442055

RESUMO

This paper reports phase one, conducted from March to June 2015, of a two-phase, qualitative descriptive study designed to explore the perceptions and experiences of older people before and after the introduction of consumer directed care (CDC) to home care packages (HCP) in Australia. Eligible consumers with a local HCP provider were mailed information about the study. Data collection occurred before the introduction of CDC and included face-to-face, in-depth interviews, summaries of interviews, field notes and reflective journaling. Semi-structured questions and 'emotional touchpoints' relating to home care were used to guide the interview conversation. Line-by-line data analysis, where significant statements were highlighted and clustered to reveal emergent themes, was used. Five older people, aged 81 to 91 years, participated in the study. The four emergent themes were: seeking quality and reciprocity in carer relationships; patchworking services; the waiting game; and technology with utility. Continuity of carers was central to the development of a trusting relationship and perceptions of care quality among older consumers. Care coordinators and workers should play a key role in ensuring older people receive timely information about CDC and their rights and responsibilities. Participants' use of contemporary technologies suggests opportunities to improve engagement of HCP clients in CDC.


Assuntos
Serviços de Assistência Domiciliar , Vida Independente , Satisfação do Paciente , Idoso de 80 Anos ou mais , Austrália , Feminino , Humanos , Entrevistas como Assunto , Masculino , Preferência do Paciente , Pesquisa Qualitativa
18.
Stroke ; 47(3): 646-51, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26839351

RESUMO

BACKGROUND AND PURPOSE: Elevated plasma homocysteine levels are associated with stroke. However, this might be a reflection of bias or confounding because trials have failed to demonstrate an effect from homocysteine lowering in stroke patients, although a possible benefit has been suggested in lacunar stroke. Genetic studies could potentially overcome these issues because genetic variants are inherited randomly and are fixed at conception. Therefore, we tested the homocysteine levels-associated genetic variant MTHFR C677T for association with magnetic resonance imaging-confirmed lacunar stroke and compared this with associations with large artery and cardioembolic stroke subtypes. METHODS: We included 1359 magnetic resonance imaging-confirmed lacunar stroke cases, 1824 large artery stroke cases, 1970 cardioembolic stroke cases, and 14 448 controls, all of European ancestry. Furthermore, we studied 3670 ischemic stroke patients in whom white matter hyperintensities volume was measured. We tested MTHFR C677T for association with stroke subtypes and white matter hyperintensities volume. Because of the established association of homocysteine with hypertension, we additionally stratified for hypertension status. RESULTS: MTHFR C677T was associated with lacunar stroke (P=0.0003) and white matter hyperintensity volume (P=0.04), but not with the other stroke subtypes. Stratifying the lacunar stroke cases for hypertension status confirmed this association in hypertensive individuals (P=0.0002), but not in normotensive individuals (P=0.30). CONCLUSIONS: MTHFR C677T was associated with magnetic resonance imaging-confirmed lacunar stroke, but not large artery or cardioembolic stroke. The association may act through increased susceptibility to, or interaction with, high blood pressure. This heterogeneity of association might explain the lack of effect of lowering homocysteine in secondary prevention trials which included all strokes.


Assuntos
Isquemia Encefálica/genética , Doenças de Pequenos Vasos Cerebrais/genética , Estudos de Associação Genética , Genótipo , Metilenotetra-Hidrofolato Redutase (NADPH2)/genética , Acidente Vascular Cerebral Lacunar/genética , Isquemia Encefálica/diagnóstico , Doenças de Pequenos Vasos Cerebrais/diagnóstico , Estudos de Coortes , Feminino , Estudos de Associação Genética/métodos , Humanos , Masculino , Fatores de Risco , Acidente Vascular Cerebral Lacunar/diagnóstico
19.
Subst Use Misuse ; 51(13): 1790-809, 2016 11 09.
Artigo em Inglês | MEDLINE | ID: mdl-27556870

RESUMO

BACKGROUND: Using an ecological perspective to examine the roles of contextual factors and proximal social processes, the current study examined problem behavior among adolescents. OBJECTIVE: The study examined how family, peer, and school processes mediate the relationship between cumulative contextual risk and problem behavior, and whether these mediating relationships are moderated by gender. METHOD: Data were obtained from the My World Survey Second Level, a cross-sectional national survey assessing risk and protective factors of mental health among 6062 adolescents aged 12-19 years (M = 14.93, SD = 1.62). Using risk factors from socioeconomic, community, and family levels, a cumulative contextual risk index (CCRI) was created to identify adolescents at increased risk of problem behavior in Ireland. Conditional process analysis examined whether gender moderated the relationship between the CCRI and problem behaviors (alcohol behavior, poorer behavioral adjustment, and problematic substance use) as mediated by five proximal social variables, family cohesion, mother criticism, father criticism, peer connectedness, and school connectedness. RESULTS: Using Hayes' (2013) SPSS macro for conditional process analyses, with age as a covariate, gender was shown to moderate the mediated relationships between CCRI and problem behaviors, via mother criticism and peer connectedness. Of note, a positive association was observed between high peer connectedness and alcohol risk behavior, highlighting the need to examine additional aspects of peer context including group norms and peer pressure. CONCLUSION: The study provides valuable and practical implications for informing research, interventions, and social policy at family, peer, and school levels.


Assuntos
Comportamento do Adolescente , Adolescente , Criança , Estudos Transversais , Uso Indevido de Medicamentos , Humanos , Irlanda , Grupo Associado , Fatores de Risco , Assunção de Riscos , Adulto Jovem
20.
Nurs Health Sci ; 18(1): 52-7, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26275055

RESUMO

A transient ischemic attack (TIA) significantly increases a person's risk of ischemic stroke. However, little is known about the experiences of these people or what influences their decision to access care. This article explores the stories of three people who experienced a TIA. All participants were interviewed after receiving a diagnosis of TIA by a specialist neurologist. By utilizing a framework of narrative inquiry, several storylines were revealed across temporal, social, and geographical landscapes. The main storylines include: bodily disruption, time stasis, altered temporal perceptions, the roles of others, and help-seeking behavior. The primary author also reflects upon his own origin and explores how this inquiry has influenced his perceptions, career, and nursing practice. This inquiry may assist healthcare workers to gain insight into the experiences of people with TIA and suggests how involvement of significant others is beneficial when educating people at risk of TIA.


Assuntos
Tomada de Decisões , Ataque Isquêmico Transitório/psicologia , Ataque Isquêmico Transitório/terapia , Narração , Feminino , Humanos , Entrevistas como Assunto , Masculino
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