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1.
Int J Qual Health Care ; 36(2)2024 May 10.
Artigo em Inglês | MEDLINE | ID: mdl-38662407

RESUMO

Patient safety is a key quality issue for health systems. Healthcare acquired adverse events (AEs) compromise safety and quality; therefore, their reporting and monitoring is a patient safety priority. Although administrative datasets are potentially efficient tools for monitoring rates of AEs, concerns remain over the accuracy of their data. Chart review validation studies are required to explore the potential of administrative data to inform research and health policy. This review aims to present an overview of the methodological approaches and strategies used to validate rates of AEs in administrative data through chart review. This review was conducted in line with the Joanna Briggs Institute methodological framework for scoping reviews. Through database searches, 1054 sources were identified, imported into Covidence, and screened against the inclusion criteria. Articles that validated rates of AEs in administrative data through chart review were included. Data were extracted, exported to Microsoft Excel, arranged into a charting table, and presented in a tabular and descriptive format. Fifty-six studies were included. Most sources reported on surgical AEs; however, other medical specialties were also explored. Chart reviews were used in all studies; however, few agreed on terminology for the study design. Various methodological approaches and sampling strategies were used. Some studies used the Global Trigger Tool, a two-stage chart review method, whilst others used alternative single-, two-stage, or unclear approaches. The sources used samples of flagged charts (n = 24), flagged and random charts (n = 11), and random charts (n = 21). Most studies reported poor or moderate accuracy of AE rates. Some studies reported good accuracy of AE recording which highlights the potential of using administrative data for research purposes. This review highlights the potential for administrative data to provide information on AE rates and improve patient safety and healthcare quality. Nonetheless, further work is warranted to ensure that administrative data are accurate. The variation of methodological approaches taken, and sampling techniques used demonstrate a lack of consensus on best practice; therefore, further clarity and consensus are necessary to develop a more systematic approach to chart reviewing.


Assuntos
Segurança do Paciente , Humanos , Erros Médicos/estatística & dados numéricos , Erros Médicos/prevenção & controle , Estudos Retrospectivos
2.
J Genet Couns ; 32(2): 462-474, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36445952

RESUMO

Current guidelines from the National Society of Genetic Counselors (NSGC) recommend that patients' ancestry be obtained when taking a family history. However, no study has explored how consistently genetic counselors obtain or utilize this information. The goals of this study included assessing how genetic counselors collect their patients' ancestry, what factors influence this decision, and how they view the utility of this information. Genetic counselors working in a direct patient care setting in the US or Canada were recruited to participate in an anonymous survey via an NSGC email blast. Most participants (n = 115) obtain information about their patients' ancestry (96.5%), with the most common methods being directly asking the patient (91%) and utilizing intake forms (43.2%). Of participants who ask about ancestry directly, 50.5% always ask about the presence of Ashkenazi Jewish ancestry and 70.3% always ask about additional ancestries, suggesting that for most genetic counselors' collection of ancestry is standard practice. However, the clinical utility of ancestry information is highly variable, with the impact on genetic testing choice being particularly low. A slight majority of participants support a reevaluation of current ancestry guidelines (51.3%), with many participants suggesting that the varying utility of ancestry in different clinical indications/specialties should be incorporated into guidelines. Despite being standard practice for most genetic counselors, no unified approach or standard for how ancestral information should be used in genetic counseling practice was identified.


Assuntos
Conselheiros , Humanos , Conselheiros/psicologia , Aconselhamento Genético/psicologia , Testes Genéticos , Sociedades , América do Norte
3.
J Genet Couns ; 32(1): 111-127, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36117419

RESUMO

Genetic counselors (GCs) provide risk assessment, education, and counseling about the genetic contribution to disease. To do so, they must effectively communicate, build rapport, and help patients make the best decisions for themselves and their families. Language barriers add a complex layer to this patient-provider dynamic. While interpreters serve as a primary solution when a patient and GC speak different languages, issues have been documented with these sessions, such as misinterpreted genetic terminology (Gutierrez et al., 2017). Having a GC with concordant language skills may help address these barriers. The purpose of this study was to assess Spanish-speaking patients' perspectives on communication, decision-making, and the interpersonal relationship developed with a bilingual GC in language concordant cancer genetic counseling sessions. Spanish-speaking patients, ages 18 or older, seen by a Spanish-speaking GC at a California public, safety-net hospital were eligible to participate in this study. Nine participants were interviewed via telephone by the bilingual researcher using a semi-structured interview guide to assess three domains: communication, decision-making, and interpersonal relationship. Analyses of interview transcripts identified themes within these three areas of focus: (1) participants felt all explanations were clear and they were not afraid to ask questions in the session, (2) participants experienced preference-concordant decision making, and (3) participants felt empowered and supported by the GC. Participants suggested that GCs working with Spanish-speaking patients in the future should consider group counseling sessions, engaging in outreach efforts to educate the Spanish-speaking community about genetics, and increasing the number of GCs who speak Spanish. These results demonstrate the positive experiences of Spanish-speaking patients in language concordant cancer genetic counseling sessions and further support the need for recruitment of Spanish-speaking individuals into the profession. Future research should further assess the experience of Spanish-speaking patients in language concordant sessions and address the role of cultural concordance in sessions.


Assuntos
Aconselhamento Genético , Neoplasias , Humanos , Adolescente , Idioma , Aconselhamento , Comunicação , Barreiras de Comunicação
4.
Public Health Nutr ; : 1-12, 2022 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-35642077

RESUMO

OBJECTIVE: Infant and under-five mortality rates in low- and middle-income countries (LMIC) can be reduced by encouraging behaviours such as sleeping under insecticide-treated bed nets, exclusive breast-feeding for the first 6 months, regular handwashing, etc. Community-based volunteer or peer-to-peer mechanisms are cost-effective ways of promoting these lifesaving practices. However, the sustainability and reach of community-based behaviour change promotion remains a challenge. Our inquiry focuses on the utilisation, by non-governmental organisations (NGO), of Care Groups, a peer-to-peer behaviour change intervention. We asked: What are the mechanisms and contexts by which Care Groups achieve social and behavioural change in nutrition, health and other sectors? DESIGN: Realist synthesis reviewing forty-two texts that contained empirical evidence about Care Group interventions. SETTING: LMIC. PARTICIPANTS: We held consultations with a research reference group, which included Care Group and nutrition experts, and Care Group - implementing NGO staff in Malawi. RESULTS: Different types of motivation drive the establishment and the sustainability of peer group interventions. A certain amount of motivation was derived from the resources provided by the NGO establishing the Care Groups. Subsequently, both volunteers and neighbourhood group members were motivated by the group dynamics and mutual support, as well as support from the wider community. Finally, volunteers and group members alike became self-motivated by their experience of being involved in group activities. CONCLUSIONS: When designing and implementing community-based behaviour change interventions, awareness of the multi-directional nature of the motivating drivers that are experienced by peer- or community group members is important, to optimise these groups' reach and sustainability.

5.
BMC Pulm Med ; 22(1): 42, 2022 Jan 21.
Artigo em Inglês | MEDLINE | ID: mdl-35062937

RESUMO

BACKGROUND: CFTR-modulators are a category of drugs that facilitate trafficking and opening of the abnormal CFTR protein in individuals with cystic fibrosis (CF) who have certain genetic mutations. Clinical trial data show that individuals taking CFTR-modulators have increased or stable lung function (FEV1) as well as reduced frequency of pulmonary exacerbations. There are no data on whether CFTR-modulators influence psychosocial aspects of the lives of individuals with CF. The purpose of this qualitative study was to explore how the introduction of CFTR-modulators has affected individuals' lived experiences outside of clinical health variables; that is, to explore whether there is a relationship between using CFTR-modulator drugs and the psychological and social aspects of the lives of individuals with CF, including: career, relationships, family planning and psychological functioning. METHODS: Eight men and women with CF ages 24-32, with a history of taking any approved CFTR-modulator for at least six months, were recruited from an adult CF center. A semi-structured interview guide was used to interview the participants. The data were coded using a grounded theory approach with an iterative methodology. RESULTS: Four themes emerged from the data: stability, identity, potentiality, and hope. CONCLUSIONS: Although these themes cannot be generalized to all individuals with CF, this study provides preliminary data for how CFTR-modulators may influence an individual with CF's outlook on life and that these individuals are feeling hopeful about the future.


Assuntos
Regulador de Condutância Transmembrana em Fibrose Cística/uso terapêutico , Fibrose Cística/tratamento farmacológico , Fibrose Cística/psicologia , Satisfação do Paciente , Qualidade de Vida , Adulto , Feminino , Humanos , Entrevistas como Assunto , Masculino , Ohio , Adulto Jovem
6.
Int J Nurs Pract ; 28(1): e12978, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34109706

RESUMO

AIMS AND OBJECTIVES: The aims of the review are to synthesise current evidence about advanced nurse practitioner clinical autonomy and consider how this may inform clinical practice and research. BACKGROUND: Clinical autonomy is one of the cornerstones of advanced nursing practice globally, yet there is limited synthesis of clinical autonomy in the literature. DESIGN: This is a narrative literature review. DATA SOURCES: The databases Cumulative Index to Nursing and Allied Health Literature, EBSCO host, Cochrane Library, CINAHL and MEDLINE were searched for publications between 2005 and 2020 inclusive. REVIEW METHODS: A systematic approach was used to analyse the literature reviewed. Two reviewers undertook quality appraisal. RESULTS: Nineteen articles were selected. Four major themes emerged: (1) 'ANP Stepping Up'-moving into and accepting advanced nursing practice roles and clinical responsibilities; (2) 'ANP Living It'-ANPs' ability to act independently including an understanding of task mastery and self-determination; (3) 'ANP Bounce-back ability'-depicted in challenges that threaten their ability to practice clinically autonomously; (4) 'ANP Setting in Motion'-indirect care activities and service-level improvements. CONCLUSION: A clearer understanding of advanced nurse practitioner clinical autonomy could help develop more in-depth knowledge. Research of advanced nurse practitioners' clinical autonomy would improve full utilisation in clinical practice.


Assuntos
Prática Avançada de Enfermagem , Profissionais de Enfermagem , Humanos , Papel do Profissional de Enfermagem
7.
J Aging Soc Policy ; 34(1): 38-57, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-33413048

RESUMO

This study uses an interpretive narrative approach to compare and contrast assumptions regarding social integration (participation in meaningful and multiple roles, and engagement in social networks) as promoted in the Chilean Comprehensive Policy for Positive Aging, with the expectations of interviewees aged 60 to 74 years. The Policy assumes specific forms of social integration by: offering different options of social integration to dependent vs. independent older people, encouraging autonomy and self-management, and assuming the primacy of family responsibility in older people's care. Both the Policy and the interviewees emphasize the value of autonomy and independence in old age; the latter, however, do not place family at the frontline when care is needed. Understanding the matches and gaps between policy assumptions and older people's expectations for social integration, including the role of family caregiving, can open new possibilities to prevent social isolation and promote different forms of social support that are valued by older adults for their emotional and practical benefit.


Assuntos
Envelhecimento , Política Pública , Idoso , Humanos , Relações Interpessoais , Integração Social , Apoio Social
8.
Cochrane Database Syst Rev ; 10: CD010686, 2020 Oct 22.
Artigo em Inglês | MEDLINE | ID: mdl-33089901

RESUMO

BACKGROUND: Virtual reality (VR) computer technology creates a simulated environment, perceived as comparable to the real world, with which users can actively interact. The effectiveness of VR distraction on acute pain intensity in children is uncertain. OBJECTIVES: To assess the effectiveness and adverse effects of virtual reality (VR) distraction interventions for children (0 to 18 years) with acute pain in any healthcare setting. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, CINAHL, PsycINFO and four trial registries to October 2019. We also searched reference lists of eligible studies, handsearched relevant journals and contacted study authors. SELECTION CRITERIA: Randomised controlled trials (RCTs), including cross-over and cluster-RCTs, comparing VR distraction to no distraction, non-VR distraction or other VR distraction. DATA COLLECTION AND ANALYSIS: We used standard Cochrane methodological processes. Two reviewers assessed risk of bias and extracted data independently. The primary outcome was acute pain intensity (during procedure, and up to one hour post-procedure). Secondary outcomes were adverse effects, child satisfaction with VR, pain-related distress, parent anxiety, rescue analgesia and cost. We used GRADE and created 'Summary of findings' tables. MAIN RESULTS: We included 17 RCTs (1008 participants aged four to 18 years) undergoing various procedures in healthcare settings. We did not pool data because the heterogeneity in population (i.e. diverse ages and developmental stages of children and their different perceptions and reactions to pain) and variations in procedural conditions (e.g. phlebotomy, burn wound dressings, physical therapy sessions), and consequent level of pain experienced, made statistical pooling of data impossible. We narratively describe results. We judged most studies to be at unclear risk of selection bias, high risk of performance and detection bias, and high risk of bias for small sample sizes. Across all comparisons and outcomes, we downgraded the certainty of evidence to low or very low due to serious study limitations and serious or very serious indirectness. We also downgraded some of the evidence for very serious imprecision. 1: VR distraction versus no distraction Acute pain intensity: during procedure Self-report: one study (42 participants) found no beneficial effect of non-immersive VR (very low-certainty evidence). Observer-report: no data. Behavioural measurements (observer-report): two studies, 62 participants; low-certainty evidence. One study (n = 42) found no beneficial effect of non-immersive VR. One study (n = 20) found a beneficial effect favouring immersive VR. Acute pain intensity: post-procedure Self-report: 10 studies, 461 participants; very low-certainty evidence. Four studies (n = 95) found no beneficial effect of immersive and semi-immersive or non-immersive VR. Five studies (n = 357) found a beneficial effect favouring immersive VR. Another study (n = 9) reported less pain in the VR group. Observer-report: two studies (216 participants; low-certainty evidence) found a beneficial effect of immersive VR, as reported by primary caregiver/parents or nurses. One study (n = 80) found a beneficial effect of immersive VR, as reported by researchers. Behavioural measurements (observer-report): one study (42 participants) found no beneficial effect of non-immersive VR (very low-certainty evidence). Adverse effects: five studies, 154 participants; very low-certainty evidence. Three studies (n = 53) reported no adverse effects. Two studies (n = 101) reported mild adverse effects (e.g. nausea) in the VR group. 2: VR distraction versus other non-VR distraction Acute pain intensity: during procedure Self-report, observer-report and behavioural measurements (observer-report): two studies, 106 participants: Self-report: one study (n = 65) found a beneficial effect favouring immersive VR and one (n = 41) found no evidence of a difference in mean pain change scores (very low-certainty evidence). Observer-report: one study (n = 65) found a beneficial effect favouring immersive VR and one (n = 41) found no evidence of a difference in mean pain change scores (low-certainty evidence). Behavioural measurements (observer-report): one study (n = 65) found a beneficial effect favouring immersive VR and one (n = 41) reported a difference in mean pain change scores with fewer pain behaviours in VR group (low-certainty evidence). Acute pain intensity: post-procedure Self-report: eight studies, 575 participants; very low-certainty evidence. Two studies (n = 146) found a beneficial effect favouring immersive VR. Two studies (n = 252) reported a between-group difference favouring immersive VR. One study (n = 59) found no beneficial effect of immersive VR versus television and Child Life non-VR distraction. One study (n = 18) found no beneficial effect of semi-immersive VR. Two studies (n = 100) reported no between-group difference. Observer-report: three studies, 187 participants; low-certainty evidence. One study (n = 81) found a beneficial effect favouring immersive VR for parent, nurse and researcher reports. One study (n = 65) found a beneficial effect favouring immersive VR for caregiver reports. Another study (n = 41) reported no evidence of a difference in mean pain change scores. Behavioural measurements (observer-report): two studies, 106 participants; low-certainty evidence. One study (n = 65) found a beneficial effect favouring immersive VR. Another study (n = 41) reported no evidence of a difference in mean pain change scores. Adverse effects: six studies, 429 participants; very low-certainty evidence. Three studies (n = 229) found no evidence of a difference between groups. Two studies (n = 141) reported no adverse effects in VR group. One study (n = 59) reported no beneficial effect in reducing estimated cyber-sickness before and after VR immersion. 3: VR distraction versus other VR distraction We did not identify any studies for this comparison. AUTHORS' CONCLUSIONS: We found low-certainty and very low-certainty evidence of the effectiveness of VR distraction compared to no distraction or other non-VR distraction in reducing acute pain intensity in children in any healthcare setting. This level of uncertainty makes it difficult to interpret the benefits or lack of benefits of VR distraction for acute pain in children. Most of the review primary outcomes were assessed by only two or three small studies. We found limited data for adverse effects and other secondary outcomes. Future well-designed, large, high-quality trials may have an important impact on our confidence in the results.


Assuntos
Dor Aguda/prevenção & controle , Dor Processual/prevenção & controle , Realidade Virtual , Dor Aguda/diagnóstico , Adolescente , Atenção , Viés , Criança , Pré-Escolar , Humanos , Manejo da Dor/métodos , Medição da Dor , Percepção da Dor , Dor Processual/diagnóstico , Ensaios Clínicos Controlados Aleatórios como Assunto
9.
Eur J Public Health ; 30(Suppl_4): iv32-iv35, 2020 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-32894279

RESUMO

Ireland has a high rate of doctor emigration. Challenging working conditions and poor work-life balance, particularly in the hospital sector, are often cited as a driver. The aim of this study was to obtain insight into hospital doctors' experiences of work and of work-life balance. In late 2019, a stratified random sample of hospital doctors participated in an anonymous online survey, distributed via the national Medical Register (overall response rate 20%; n = 1070). This article presents a qualitative analysis of free-text questions relating to working conditions (n = 469) and work-life balance (n = 314). Results show that respondent hospital doctors, at all levels of seniority, were struggling to achieve balance between work and life, with work-life imbalance and work overload being the key issues arising. Work-life imbalance has become normalized within Irish hospital medicine. Drawing on insights from respondent hospital doctors, this study reflects on the sustainability of this way of working for the individual doctors, the medical workforce and the Irish health system. If health workforce planning is about getting the right staff with the right skills in the right place at the right time to deliver care, work-life balance is about maintaining doctor wellbeing and encouraging their retention.


Assuntos
Médicos/psicologia , Equilíbrio Trabalho-Vida , Carga de Trabalho , Adulto , Atitude do Pessoal de Saúde , Feminino , Hospitais , Humanos , Entrevistas como Assunto , Irlanda , Satisfação no Emprego , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
10.
J Genet Couns ; 29(6): 1041-1049, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32091143

RESUMO

Approximately one in three Ashkenazi Jews are carriers for an autosomal recessive Jewish genetic disease (JGD). However, studies indicate that most Jews are uneducated on this topic and obstetricians do not routinely offer carrier screening to Jewish patients. Both the Reform and Conservative movements of Judaism call for JGD education to take place within the synagogue; however, little is known about the extent of this education occurring today. An online survey was created for Reform and Conservative rabbis to assess the types of JGD education taking place within the synagogue. Additionally, the survey included questions to assess JGD knowledge and possible factors that could predict counseling activity and knowledge level. Of the 94 participants, 91% had provided education about JGDs to congregants, with 98.8% providing this education during premarital counseling sessions. For most respondents, explaining recessive inheritance pattern and carrier screening was the extent of the discussion. Additionally, the majority of rabbis scored below 50% on the knowledge portion of the survey, with an average score of 1.9/4. There were no statistically significant differences between JGD education in Reform vs. Conservative synagogues, and there were no statistically significant predictors of knowledge score or JGD education frequency. In conclusion, while the number of rabbis discussing this topic is encouraging, discussion topics were found to be limited and their knowledge of JGDs was found to be poor.


Assuntos
Triagem de Portadores Genéticos/métodos , Educação em Saúde/métodos , Judeus/genética , Adulto , Feminino , Humanos , Masculino , Inquéritos e Questionários
11.
J Genet Couns ; 28(5): 962-973, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31290196

RESUMO

Genetic counseling assistants (GCAs) have the potential to address the high demand for genetic counselors by promoting task-sharing, increasing genetic counselor efficiency, and allowing for higher level duties to be optimized by genetic counselors. However, little research has been published on the role of GCAs. This study explored current tasks of GCAs in the United States, the appropriateness of those tasks, the perceived impact on the profession, and how these findings compared between genetic counselors with and without GCAs. Full members of the National Society of Genetic Counselors (NSGC) with and without experience working with GCAs were recruited via the NSGC Student Research listserv to complete an online survey and 271 surveys were analyzed. Participants working in both clinical and laboratory settings and in all primary specialties reported working with GCAs (n = 131); GCAs were reported to frequently perform clerical tasks but were involved less often in clinical tasks such as calling patients with genetic test results. There was no difference between participants with GCAs and those without GCAs in tasks they reported GCAs are or may be performing, yet participants without GCAs believed GCAs performed more tasks on average than those with GCAs reported (p < 0.001). Participants did not differ on the appropriateness of tasks, reporting clerical tasks as more appropriate for GCAs than clinically involved tasks, with the exception of calling patients with variant of uncertain significance (VUS) results in which more participants working with GCAs reported it as an appropriate task (13%) than those without GCAs (4%; p < 0.05). Review of open-ended responses revealed themes pertaining to primary limitations, benefits, and concerns of the GCA role. The most commonly reported concern about GCAs was their poorly defined scope of practice (n = 182). Other reported limitations included a heavy workload, lack of training, and lack of experience for GCAs while the benefits of working with GCAs included increased time available for higher level duties, patient volumes, and efficiency. These data provide genetic counselors, their institutions, and the NSGC with a more generalizable understanding of current GCA roles on a national level, across specialties. Additionally, these data may help establish a scope of practice for GCAs by creating a baseline job description for genetic counselors and their institutions interested in implementing a GCA into their practice to increase patient access to genetic counseling services. It is recommended that further research objectively quantify the value added by GCAs using efficiency metrics and further clarify the role of laboratory GCAs.


Assuntos
Conselheiros , Aconselhamento Genético , Aconselhamento/métodos , Feminino , Aconselhamento Genético/métodos , Humanos , Descrição de Cargo , Masculino , Inquéritos e Questionários , Estados Unidos , Recursos Humanos
12.
Matern Child Health J ; 23(11): 1556-1563, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31240427

RESUMO

Objectives In order to improve maternal and neonatal outcomes, it is important to understand how to maximise the utilisation of MNCH services. The supply side (service-driven) factors affecting access to MNCH services are more commonly studied and are better understood than the demand side (community led) factors. The aim of this study was to identify demand and supply determinants of access to MNCH services in Malawi. Methods Research was conducted in two districts of the Central Region of Malawi (Nkhotakota & Mchinji). Qualitative interviews (n = 85) and focus group discussions (n = 20) were conducted with a range of community members, leaders and health workers. Data were managed in NVivo (v10) and analysed using framework analysis, using Levesque et al. (2013) access framework. Results Community members clearly recognise their need for and seek out MNCH care from the formal health system. Women experience difficulties reaching health services and when reached find them limited, characterised by many indirect costs. There are many technical and interpersonal deficits, which results in poor satisfaction and reportedly poor outcomes for women. Conclusions for practice Women are seeking and utilising MNCH services which they find under-resourced and unwelcoming. Utilising the Levesque et al. (2013) framework, a granular analysis of demand and supply factors has identified the many challenges that remain to achieving equitable access to MNCH services in Malawi. Community members experience lack of availability, acceptability and appropriateness of these essential services.


Assuntos
Serviços de Saúde da Criança/provisão & distribuição , Acessibilidade aos Serviços de Saúde/normas , Serviços de Saúde Materna/provisão & distribuição , Adulto , Criança , Pré-Escolar , Feminino , Grupos Focais/métodos , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Humanos , Malaui , Gravidez , Pesquisa Qualitativa
13.
Am J Med Genet A ; 176(6): 1389-1397, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29696786

RESUMO

Adults with Down syndrome (DS) are surviving longer, yet data delineating life skills are lacking. As providers are encouraged to provide a "balanced" description of DS to family members/caregivers, more quantitative data are required to accurately describe the abilities and potential of adults with DS. This study assessed health, social, communication, and daily living skills of adults with DS to describe the range of abilities and to show how increasing age contributes to functional abilities. Caregivers of an adult with DS 20 years of age or older participated in an online questionnaire. Descriptive statistics and scores from scales assessed relationships between the number of health issues reported and functional abilities, and how the abilities changed as age increased. Of 188 participants, 157 completed the survey with partial results included. Communication, independence, and social activity scores were compared to the number of congenital and non-congenital health issues reported. Linear regression results showed those with more health issues were significantly less likely to be independent and social. However, only current health issues affected communication skills. No significant correlation occurred between the number of congenital abnormalities and scores for independence/life skills as an adult. T-test by age group found decreasing abilities after 40 years of age. In conclusion, quantitative data and information from this study is beneficial for providers in order to describe the potential for an individual with DS and to assist caregivers to plan accordingly for the future of their adult with DS.


Assuntos
Atividades Cotidianas , Síndrome de Down/etiologia , Comportamento Social , Adulto , Idoso , Cuidadores , Comunicação , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Inquéritos e Questionários
14.
J Genet Couns ; 27(2): 493-504, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29372365

RESUMO

Social media is a common method of communication in people's personal lives and professional settings. Gallagher et al. (2016) recommended, "it is time for genetic counselors to embrace social media as a means of communicating with patients or other healthcare professionals." Full members of the National Society of Genetic Counselors (NSGC) in the USA and Canada and genetics patients in Cleveland, OH, were surveyed to determine interest in using social media for patient-provider interactions. Both cohorts indicated that patient privacy and confidentiality would be a concern; however, survey results indicated patients would be interested in using social media to receive general information about genetic counseling and to learn about genetics services. Genetic counselors indicated privacy issues were not concerning if social media were to be used in this capacity. The majority of genetic counselor participants (88.7%) indicated they would welcome national guidelines for patient-provider social media use. Data from this study demonstrated that sharing what to expect at a genetic counseling appointment, defining genetic counseling, and announcing community outreach events are possible ways genetic counselors could utilize social media to communicate with and educate patients.


Assuntos
Aconselhamento Genético/psicologia , Mídias Sociais , Canadá , Feminino , Pessoal de Saúde , Humanos , Masculino , Privacidade
15.
BMC Pregnancy Childbirth ; 17(1): 321, 2017 Sep 25.
Artigo em Inglês | MEDLINE | ID: mdl-28946847

RESUMO

BACKGROUND: For years, Malawi remained at the bottom of league tables on maternal, neonatal and child health. Although maternal mortality ratios have reduced and significant progress has been made in reducing neonatal morality, many challenges in achieving universal access to maternal, newborn and child health care still exist in Malawi. In Malawi, there is still minimal, though increasing, male involvement in ANC/PMTCT/MNCH services, but little understanding of why this is the case. The aim of this paper is to explore the role and involvement of men in MNCH services, as part of the broader understanding of those community system factors. METHODS: This paper draws on the qualitative data collected in two districts in Malawi to explore the role and involvement of men across the MNCH continuum of care, with a focus on understanding the community systems barriers and enablers to male involvement. A total of 85 IDIs and 20 FGDs were conducted from August 2014 to January 2015. Semi-structure interview guides were used to guide the discussion and a thematic analysis approach was used for data analysis. RESULTS: Policy changes and community and health care provider initiatives stimulated men to get involved in the health of their female partners and children. The informal bylaws, the health care provider strategies and NGO initiatives created an enabling environment to support ANC and delivery service utilisation in Malawi. However, traditional gender roles in the home and the male 'unfriendly' health facility environments still present challenges to male involvement. CONCLUSION: Traditional notions of men as decision makers and socio-cultural views on maternal health present challenges to male involvement in MNCH programs. Health care provider initiatives need to be sensitive and mindful of gender roles and relations by, for example, creating gender inclusive programs and spaces that aim at reducing perceptions of barriers to male involvement in MNCH services so that programs and spaces that are aimed at involving men are designed to welcome men as full partners in the overall goals for improving maternal, neonatal and child health outcomes.


Assuntos
Identidade de Gênero , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Serviços de Saúde Materno-Infantil/estatística & dados numéricos , Comportamento Paterno/etnologia , Pré-Escolar , Tomada de Decisões , Relações Familiares/etnologia , Feminino , Grupos Focais , Ambiente de Instituições de Saúde , Humanos , Lactente , Recém-Nascido , Entrevistas como Assunto , Malaui , Masculino , Serviços de Saúde Materno-Infantil/organização & administração , Política Organizacional , Cuidado Pré-Natal/estatística & dados numéricos , Pesquisa Qualitativa
16.
BMC Health Serv Res ; 17(1): 130, 2017 02 11.
Artigo em Inglês | MEDLINE | ID: mdl-28187718

RESUMO

BACKGROUND: Increasing levels of physical activity decreases the risk of premature mortality associated with chronic diseases e.g., coronary heart disease, type 2 diabetes, stroke. Despite this, most adults in England do not meet physical activity guidelines. Physical activity advice and signposting offered to at-risk patients by primary care providers is recommended. However, exercise medicine education is sparse, leading to poor practitioner knowledge of the risk reduction evidence and strategies to implement effective patient behaviour change. The 'Generation Games' intervention seeks physical activity increase in the 50+ population of Oxfordshire. It offers a Health Professional Education Programme (HPEP) providing exercise medicine education, and promotion of Generation Games to which health professionals can signpost patients. There is a poor evidence base concerning how such education translates into patient exercise behaviour change. METHODS: The research aimed to create more understanding of how an education programme can influence health professionals to recommend Generation Games to and increase exercise behaviour in type 2 diabetes patients. A case study method facilitated examination of the routines and cultures studied - the experience of Diabetes nurses was used as an example of best practice engagement with the HPEP. Observation, interviews and documentation were employed to triangulate data. Data analysis refined and developed themes within key theoretical frameworks. RESULTS: Firstly, there is a lack of knowledge about physical activity risk reduction benefits and a belief that efforts to motivate patients to increase their physical activity are ineffective, thus creating barriers to engagement with the HPEP. Secondly, practice nurses tasked with delivering lifestyle advice to diabetes patients - themselves suffering a motivational interviewing skill deficit - find ingrained physical activity behaviours extremely challenging, and therefore highly value the HPEP for providing helpful tools. Thirdly, patients who hear of Generation Games from a health professional may have mismatched expectations of how their exercise behaviour can change. CONCLUSIONS: Exercise medicine education has the potential to improve patient care and services. Before initiatives like the HPEP can succeed, primary care practice requires a more supportive exercise medicine culture. Also necessary is adequate resourcing of patient-centred behaviour change advice, training, encouragement and monitoring services.


Assuntos
Diabetes Mellitus Tipo 2/terapia , Terapia por Exercício , Pessoal de Saúde/educação , Idoso , Inglaterra , Feminino , Comportamentos Relacionados com a Saúde , Humanos , Masculino , Motivação , Atenção Primária à Saúde , Comportamento de Redução do Risco
17.
J Pediatr ; 177S: S87-S106, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-27666279

RESUMO

The Irish health care system is based on a complex and costly mix of private, statutory, and voluntary provisions. The majority of health care expenditure comes from the state, with a significant proportion of acute hospital care funded from private insurance, but there are relatively high out-of-pocket costs for most service users. There is free access to acute hospital care, but not for primary care, for all children. About 40% of the population have free access to primary care. Universal preventive public health services, including vaccination and immunization, newborn blood spot screening, and universal neonatal hearing screening are free. Major health challenges include poverty, obesity, drug and alcohol use, and mental health. The health care system has been dominated for the last 5 years by the impact of the current recession, which has led to very sharp cuts in health care expenditure. It is unclear if the necessary substantial reform of the system will happen. Government policy calls for a move toward a patient-centered, primary care-led system, but without very substantial transfers of resources and investment in Information and Communication Technology, this is unlikely to occur.


Assuntos
Serviços de Saúde da Criança , Saúde da Criança , Criança , Pré-Escolar , Humanos , Irlanda
18.
Hum Resour Health ; 14(Suppl 1): 34, 2016 06 30.
Artigo em Inglês | MEDLINE | ID: mdl-27381189

RESUMO

BACKGROUND: Health professionals, particularly doctors, nurses and midwives, are in high demand worldwide. Therefore, it is important to assess the future plans and likelihood of return of emigrating health professionals. Nevertheless, health professionals are, by definition, a difficult population to track/survey. This exploratory study reports on the migration intentions of a sample of doctors, nurses and midwives who had emigrated from Ireland, a high-income country which has experienced particularly high outward and inward migration of health professionals since the year 2000. METHODS: Health professionals who had emigrated from Ireland were identified via snowball sampling through Facebook and invited to complete a short online survey composed of closed and open response questions. RESULTS: A total of 388 health professionals (307 doctors, 73 nurses and 8 midwives) who had previously worked in Ireland completed the survey. While over half had originally intended to spend less than 5 years in their destination country at the time of emigration, these intentions changed over time, with the desire to remain abroad on a permanent basis increasing from 10 to 34 % of doctor respondents. Only a quarter of doctors and a half of nurses and midwives intended to return to practice in Ireland in the future. CONCLUSIONS: The longer health professionals remain abroad, the less likely they are to return to their home countries. Countries should focus on the implementation of retention strategies if the 'carousel' of brain drain is to be interrupted. This would allow source countries to benefit from their investments in training health professionals, rather than relying on international recruitment to meet health system staffing needs. Improved data collection systems are also needed to track the migratory patterns and changing intentions of health professionals. Meanwhile, social networking platforms offer alternative methods of filling this information gap.


Assuntos
Emigração e Imigração , Intenção , Enfermeiras e Enfermeiros , Seleção de Pessoal , Médicos , Área de Atuação Profissional , Mídias Sociais , Adulto , Atitude do Pessoal de Saúde , Atenção à Saúde , Emigrantes e Imigrantes , Pessoal Profissional Estrangeiro , Humanos , Irlanda , Enfermeiros Obstétricos , Inquéritos e Questionários , Migrantes , Recursos Humanos
19.
Public Health Nutr ; 19(6): 988-97, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26156809

RESUMO

OBJECTIVE: The present study aimed to measure the prevalence of different types of health and nutrition claims on foods and non-alcoholic beverages in a UK sample and to assess the nutritional quality of such products carrying health or nutrition claims. DESIGN: A survey of health and nutrition claims on food packaging using a newly defined taxonomy of claims and internationally agreed definitions of claim types. SETTING: A national UK food retailer: Tesco. SUBJECTS: Three hundred and eighty-two products randomly sampled from those available through the retailer's website. RESULTS: Of the products, 32 % (95 % CI 28, 37 %) carried either a health or nutrition claim; 15 % (95 % CI 11, 18 %) of products carried at least one health claim and 29 % (95 % CI 25, 34 %) carried at least one nutrition claim. When adjusted for product category, products carrying health claims tended to be lower in total fat and saturated fat than those that did not, but there was no significant difference in sugar or sodium levels. Products carrying health claims had slightly higher fibre levels than products without. Results were similar for comparisons between products that carry nutrition claims and those that do not. CONCLUSIONS: Health and nutrition claims appear frequently on food and beverage products in the UK. The nutrient profile of products carrying claims is marginally healthier than for similar products without claims, suggesting that claims may have some but limited informational value. The implication of these findings for guiding policy is unclear; future research should investigate the 'clinical relevance' of these differences in nutritional quality.


Assuntos
Rotulagem de Alimentos , Valor Nutritivo , Ácidos Graxos/análise , Análise de Alimentos , Embalagem de Alimentos , Sódio na Dieta/análise , Inquéritos e Questionários , Reino Unido
20.
Public Health Nutr ; 19(1): 93-103, 2016 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-25874731

RESUMO

OBJECTIVE: To investigate the feasibility and acceptability of using wearable cameras as a method to capture the opportunities for food and drink purchasing/consumption that young people encounter on their regular journeys to and from school. DESIGN: A qualitative study using multiple data-collection methods including wearable cameras, global positioning system units, individual interviews, food and drink purchase and consumption diaries completed by participants over four days, and an audit of food outlets located within an 800 m Euclidean buffer zone around each school. SETTING: A community setting. SUBJECTS: Twenty-two students (fourteen girls and eight boys) aged 13-15 years recruited from four secondary schools in two counties of England. RESULTS: Wearable cameras offered a feasible and acceptable method for collecting food purchase and consumption data when used alongside traditional methods of data collection in a small number of teenagers. We found evidence of participants making deliberate choices about whether or not to purchase/consume food and drink on their journeys. These choices were influenced by priorities over money, friends, journey length, travel mode and ease of access to opportunities for purchase/consumption. Most food and drink items were purchased/consumed within an 800 m Euclidean buffer around school, with items commonly selected being high in energy, fat and sugar. Wearable camera images combined with interviews helped identify unreported items and misreporting errors. CONCLUSIONS: Wearable camera images prompt detailed discussion and generate contextually specific information which could offer new insights and understanding around eating behaviour patterns. The feasibility of scaling up the use of these methods requires further empirical work.


Assuntos
Comportamento do Adolescente , Coleta de Dados/instrumentação , Comportamento Alimentar , Adolescente , Bebidas , Comportamento de Escolha , Estudos de Viabilidade , Feminino , Preferências Alimentares , Serviços de Alimentação/economia , Humanos , Masculino , Instituições Acadêmicas , Lanches , Estudantes , Viagem , Reino Unido
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