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1.
Acta Paediatr ; 2023 Dec 22.
Artigo em Inglês | MEDLINE | ID: mdl-38140731

RESUMO

AIM: This meta-analysis identified the prevalence of depression in parents of children with Type 1 diabetes. METHODS: MEDLINE, PsycINFO and CINAHL databases were searched for papers published in English from 1980 to May 2022, yielding 18 studies (N = 2044 participants). The prevalence of parental depression was pooled across the studies. RESULTS: The prevalence of depression among parents of children with Type 1 diabetes was high. Random-effects meta-analyses estimated the prevalence of moderate depression and above in the total sample as 18.4% (95% CI 12.8-24.6; k = 17, N = 2044), with rates of 17.3% in mothers (95% CI 12.7-22.5; k = 12, N = 1106) and 9% in fathers (95% CI 4.3-15.1; k = 6, N = 199). The estimated prevalence of mild depression and above in the total sample was 32.7% (95% CI 20.3-46.6; k = 8, N = 797), with rates of 29.4% in mothers (95% CI 17.8-42.6; k = 4 N = 330) and 13.6% in fathers (95% CI 5.2-25.2; k = 2 N = 44). All results were characterised by high levels of heterogeneity. The risk of publication bias was low. CONCLUSION: More than 1 in 6 parents of children with Type 1 diabetes had depression in the moderate plus category. The limitations and implications of these results are discussed.

2.
Artigo em Inglês | MEDLINE | ID: mdl-37132601

RESUMO

Significance: Pressure injuries are prevalent, yet preventable global health care problem estimated to affect 14% of hospital patients and up to 46% of aged care residents. One common prevention strategy is improving skin integrity through emollient therapy to optimize hydration and avoid skin breakdown. Therefore, this study aimed to review the literature and determine effectiveness of inert emollients, moisturizers, and barrier preparations compared with standard care, to prevent pressure injury in aged care or hospital settings. Recent Advances: Search terms were derived with database searches, including ProQuest, Cumulative Index of Nursing and Allied Health Literature (CINAHL), Medline, Science Direct, Scopus, and the Cochrane library. The Robins1 and Risk of Bias 2 (Rob2) quality appraisal tools were used. A meta-analysis of the effects of interventions was conducted (random effects). Four studies met the inclusion criteria, with heterogeneous quality. Pooling of nonrandomized studies found that the application of emollients, moisturizers or barrier preparations did not significantly reduce incidence of pressure injury compared with standard care (relative risk 0.50, 95% confidence interval: 0.15-1.63, Z = 1.15, p = 0.25). Critical Issues: This review suggests that the use of inert moisturizers, emollients, or barrier preparations for preventing pressure injuries was not effective to prevent pressure injury in aged care or hospital settings. However, there was a distinct lack of randomized controlled trials (RCTs), with only one meeting the inclusion criteria. Furthermore, most of the included studies did not report on the frequency of application of the product, making it difficult to determine if application was in line with current international guidelines. One included study, which utilized a combination of neutral body wash and emollient demonstrated a significant reduction in the development of stage one and two pressure injuries. This combination of care may further support skin integrity and should be further examined in future trials. Future Directions: Future studies should ideally be RCTs, which control for skin cleansing, and implement an inert moisturizer emollient or barrier preparation as part of a pressure injury reduction bundle of care. Standardization of the application of the product, the volume of product applied at each application, and the quality of the product should also be considered.

3.
BMJ Open ; 13(4): e068366, 2023 04 28.
Artigo em Inglês | MEDLINE | ID: mdl-37116998

RESUMO

OBJECTIVES: We aimed to: (A) describe researcher decision-making when including or excluding adults with conditions that have the potential to affect capacity and/or communication in research and (B) explore the underlying values and reasoning of stakeholders in research which falls under the provisions of the Mental Capacity Act, 2005. DESIGN: The mixed-methods design included semistructured interviews with adults with conditions that have the potential to affect capacity and/or communication, supporters, researchers, research ethics committee members and an online survey with researchers. Triangulation was used to integrate the data and examine the complementarity of the findings. SETTING: England and Wales. PARTICIPANTS: There were 61 participants who took part in semistructured interviews, of which 39 were adults with conditions with potential to affect capacity and/or communication, 6 were in support roles for adults with conditions with potential to affect capacity and/or communication (including family members and professionals in advocacy organisations), 8 were members of research ethics committees flagged under the Mental Capacity Act to review research where there could be issues of mental capacity and 8 were researchers with experience of working with adults with conditions that have the potential to affect capacity and/or communication. The online survey had 128 participants, researchers with experience of working with adults with conditions that have the potential to affect capacity and/or communication. RESULTS: All stakeholders were supportive of the genuine inclusion of adults with conditions that have the potential to affect capacity and/or communication in research, and exclusion was seen as a form of discrimination. Many researchers were daunted by meeting the threshold within the legislation for including participants who may lack capacity. CONCLUSION: Further training, expertise and resources are required to promote the successful inclusion in research of adults with conditions that have the potential to affect capacity and/or communication.


Assuntos
Família , Projetos de Pesquisa , Humanos , Adulto , Inglaterra , Comitês de Ética em Pesquisa , Comunicação
4.
BMJ Open ; 12(3): e059036, 2022 03 31.
Artigo em Inglês | MEDLINE | ID: mdl-35361652

RESUMO

OBJECTIVES: This study aimed to determine the characteristics of ethical review and recruitment processes, concerning the inclusion of adults with capacity-affecting conditions and associated communication difficulties in ethically sound research, under the provisions of the Mental Capacity Act (MCA, 2005) for England and Wales. DESIGN: A documentary-based survey was conducted focusing on adults with capacity-affecting conditions and associated communication difficulties. The survey investigated: (1) retrospective studies during the implementation period of the MCA (2007-2017); (2) prospective applications to MCA-approved Research Ethics Committees (RECs) during a 12-month period (2018-19); (3) presentational and linguistic content of participant information sheets used with this population. SETTING: Studies conducted and approved in England and Wales. SAMPLE: Studies focused on adults with the following capacity-affecting conditions: acquired brain injury; aphasia after stroke; autism; dementia; intellectual disabilities; mental health conditions. The sample comprised: (1) 1605 studies; (2) 83 studies; (3) 25 participant information sheets. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was the inclusion/exclusion of adults with capacity-affecting conditions from studies. The secondary outcome was the provisions deployed to support their inclusion. RESULTS: The retrospective survey showed an incremental rise in research applications post-MCA implementation from 2 (2012) to 402 (2017). The prospective survey revealed exclusions of people on the bases of: 'lack of capacity' (n=21; 25%); 'communication difficulties' (n=5; 6%); 'lack of consultee' (n=11; 13%); and 'limited English' (n=17; 20%). REC recommendations focused mainly on participant-facing documentation. The participant information sheets were characterised by inconsistent use of images, typography and layout, volume of words and sentences; some simplified language content, but variable readability scores. CONCLUSIONS: People with capacity-affecting conditions and associated communication difficulties continue to be excluded from research, with recruitment efforts largely concentrated around participant-facing documentation. There is a need for a more nuanced approach if such individuals are to be included in ethically sound research.


Assuntos
Comunicação , Revisão Ética , Adulto , Inglaterra , Humanos , Estudos Retrospectivos , País de Gales
5.
J Foot Ankle Res ; 14(1): 60, 2021 Dec 03.
Artigo em Inglês | MEDLINE | ID: mdl-34861898

RESUMO

BACKGROUND: Wound classification systems are useful tools to characterise diabetes-related foot ulcers (DFU) and are utilised for the purpose of clinical assessment, to promote effective communication between health professionals, and to support clinical audit and benchmarking. Australian guidelines regarding wound classification in patients with DFU are outdated. We aimed to adapt existing international guidelines for wound classification to develop new evidence-based Australian guidelines for wound classification in people with diabetes and DFU. METHODS: Recommended NHRMC procedures were followed to adapt suitable International Working Group on the Diabetic Foot (IWGDF) guidelines on wound classification to the Australian health context. Five IWGDF wound classification recommendations were evaluated and assessed according to the ADAPTE and GRADE systems. We compared our judgements with IWGDF judgements to decide if recommendations should be adopted, adapted or excluded in an Australian context. We re-evaluated the quality of evidence and strength of recommendation ratings, provided justifications for the recommendation and outlined any special considerations for implementation, subgroups, monitoring and future research in an Australian setting. RESULTS: After the five recommendations from the IWGDF 2019 guidelines on the classification of DFUs were evaluated by the panel, two were adopted and three were adapted to be more suitable for Australia. The main reasons for adapting, were to align the recommendations to existing Australian standards of care, especially in specialist settings, to maintain consistency with existing recommendations for documentation, audit and benchmarking and to be more appropriate, acceptable and applicable to an Australian context. In Australia, we recommend the use of the SINBAD system as a minimum standard to document the characteristics of a DFU for the purposes of communication among health professionals and for regional/national/international audit. In contrast to the IWGDF who recommend against usage, in Australia we recommend caution in the use of existing wound classification systems to provide an individual prognosis for a person with diabetes and a foot ulcer. CONCLUSIONS: We have developed new guidelines for wound classification for people with diabetes and a foot ulcer that are appropriate and applicable for use across diverse care settings and geographical locations in Australia.


Assuntos
Diabetes Mellitus , Pé Diabético , Úlcera do Pé , Austrália , Medicina Baseada em Evidências , Pessoal de Saúde , Humanos
6.
PLoS One ; 16(9): e0256697, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34469482

RESUMO

BACKGROUND: The Mental Capacity Act (MCA, 2005) and its accompanying Code of Practice (2007), govern research participation for adults with capacity and communication difficulties in England and Wales. We conducted a systematic review and narrative synthesis to investigate the application of these provisions from 2007 to 2019. METHODS AND FINDINGS: We included studies with mental capacity in their criteria, involving participants aged 16 years and above, with capacity-affecting conditions and conducted in England and Wales after the implementation of the MCA. Clinical trials of medicines were excluded. We searched seven databases: Academic Search Complete, ASSIA, MEDLINE, CINAHL, PsycArticles, PsycINFO and Science Direct. We used narrative synthesis to report our results. Our review follows Preferred Reporting Items for Systematic Reviews and is registered on PROSPERO, CRD42020195652. 28 studies of various research designs met our eligibility criteria: 14 (50.0%) were quantitative, 12 (42.9%) qualitative and 2 (7.1%) mixed methods. Included participants were adults with intellectual disabilities (n = 12), dementia (n = 9), mental health disorders (n = 2), autism (n = 3) and aphasia after stroke (n = 2). We found no studies involving adults with acquired brain injury. Diverse strategies were used in the recruitment of adults with capacity and communication difficulties with seven studies excluding individuals deemed to lack capacity. CONCLUSIONS: We found relatively few studies including adults with capacity and communication difficulties with existing regulations interpreted variably. Limited use of consultees and exclusions on the basis of capacity and communication difficulties indicate that this group continue to be under-represented in research. If health and social interventions are to be effective for this population, they need to be included in primary research. The use of strategic adaptations and accommodations during the recruitment process, may serve to support their inclusion.


Assuntos
Ensaios Clínicos como Assunto/estatística & dados numéricos , Deficiência Intelectual/psicologia , Seleção de Pacientes , Projetos de Pesquisa/estatística & dados numéricos , Consentimento do Representante Legal/estatística & dados numéricos , Adulto , Ensaios Clínicos como Assunto/legislação & jurisprudência , Tomada de Decisões , Inglaterra , Humanos , Deficiência Intelectual/terapia , Projetos de Pesquisa/legislação & jurisprudência , Consentimento do Representante Legal/legislação & jurisprudência , País de Gales
7.
Epilepsy Behav Rep ; 16: 100456, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34095805

RESUMO

The ketogenic diet (KD) may have a role in treating super-refractory status epilepticus (SRSE). Predominantly used in paediatric epilepsy, there are few reports of its use in adults. We describe a 19-year-old man with UBE2A deficiency syndrome, drug resistant generalized epilepsy, and severe intellectual disability, who developed SRSE. Initiation of the KD on day 81 of his intensive care unit stay and achieving a state of ketosis seven days later resulted in SRSE resolution and discharge from hospital and recovery to his normal cognitive state. Initiating the KD required a multidisciplinary team for diet initiation and carer education. The KD requires a prospective study of efficacy for SRSE and this should include adult patients.

8.
Health Expect ; 24(1): 152-164, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33245186

RESUMO

OBJECTIVE: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales. METHODS: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi-authored advisory documents that were publicly available on the Health Research Authority website. Textual review of key words was conducted followed by summative content analysis. RESULTS: Representation of people with communication and understanding difficulties was confined to procedural information and position statements that focused mainly on risk management and protection. Whilst a need to engage potential participants was recognized, guidance provided was imprecise. CONCLUSIONS: Tensions exist between the protection versus empowerment of people with communication and understanding difficulties in research. The development of structured, evidence-based guidance is indicated. PATIENT OR PUBLIC CONTRIBUTION: People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings.


Assuntos
Cuidadores , Políticas , Inglaterra , Humanos , Inquéritos e Questionários , País de Gales
9.
J Am Osteopath Assoc ; 111(5): 339-43, 2011 May.
Artigo em Inglês | MEDLINE | ID: mdl-21673086

RESUMO

In the early 1960s, Dorothy Marsh, DO, then president of the California Osteopathic Association, ardently promoted an amalgamation with the California Medical Association that would eliminate the doctorate of osteopathy (ie, DO) degree and grant medical doctor (MD) degrees to DO holders. Marsh traveled extensively throughout California in an effort to gain support for the merger, which passed in spring 1961. The osteopathic medical community tends to view the California merger as a dark period in history of the profession, a devastating loss of members and facilities. Yet, on the day it was signed, Marsh called the event a "historic achievement in the field of osteopathy." Using primary documents from the Dorothy Marsh Collection at the University of California, Los Angeles, the author attempts to understand the reasons why an osteopathic physician would fight so passionately to abandon her own professional identity. These documents shed light on Marsh's motivations and the perspectives of merger supporters and opponents during this period.


Assuntos
Medicina Osteopática/legislação & jurisprudência , Identificação Social , Justiça Social/legislação & jurisprudência , Percepção Social , California , História do Século XX , Humanos , Medicina Osteopática/história , Justiça Social/psicologia , Estados Unidos
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