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1.
Epilepsia ; 64(7): 1862-1872, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37150944

RESUMO

OBJECTIVE: Epilepsy is largely a treatable condition with antiseizure medication (ASM). Recent national administrative claims data suggest one third of newly diagnosed adult epilepsy patients remain untreated 3 years after diagnosis. We aimed to quantify and characterize this treatment gap within a large US academic health system leveraging the electronic health record for enriched clinical detail. METHODS: This retrospective cohort study evaluated the proportion of adult patients in the health system from 2012 to 2020 who remained untreated 3 years after initial epilepsy diagnosis. To identify incident epilepsy, we applied validated administrative health data criteria of two encounters for epilepsy/seizures and/or convulsions, and we required no ASM prescription preceding the first encounter. Engagement with the health system at least 2 years before and at least 3 years after diagnosis was required. Among subjects who met administrative data diagnosis criteria, we manually reviewed medical records for a subset of 240 subjects to verify epilepsy diagnosis, confirm treatment status, and elucidate reason for nontreatment. These results were applied to estimate the proportion of the full cohort with untreated epilepsy. RESULTS: Of 831 patients who were automatically classified as having incident epilepsy by inclusion criteria, 80 (10%) remained untreated 3 years after incident epilepsy diagnosis. Manual chart review of incident epilepsy classification revealed only 33% (78/240) had true incident epilepsy. We found untreated patients were more frequently misclassified (p < .001). Using corrected counts, we extrapolated to the full cohort (831) and estimated <1%-3% had true untreated epilepsy. SIGNIFICANCE: We found a substantially lower proportion of patients with newly diagnosed epilepsy remained untreated compared to previous estimates from administrative data analysis. Manual chart review revealed patients were frequently misclassified as having incident epilepsy, particularly patients who were not treated with an ASM. Administrative data analyses utilizing only diagnosis codes may misclassify patients as having incident epilepsy.


Assuntos
Anticonvulsivantes , Epilepsia , Humanos , Adulto , Estados Unidos/epidemiologia , Estudos Retrospectivos , Anticonvulsivantes/uso terapêutico , Epilepsia/diagnóstico , Epilepsia/tratamento farmacológico , Epilepsia/epidemiologia , Convulsões/tratamento farmacológico , Registros Eletrônicos de Saúde
2.
J Inherit Metab Dis ; 45(3): 406-416, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35124835

RESUMO

Lysosomal storage disorders are rare multiorgan, degenerative conditions requiring invasive treatment. Rare disorders pose unique challenges; therefore, exploring their impact is crucial for understanding family needs. This novel review aimed to understand the psychosocial outcomes for parents of children with lysosomal storage disorders. Five electronic databases were systematically searched. Thirty-eight (23 qualitative, 10 qualitative and 5 mixed methods) studies were included, analysed using a sequential explanatory narrative synthesis and appraised for their methodological quality. Quantitative data revealed the multifaceted impact on parents' psychological and social wellbeing. Qualitative data informed the challenges that these parents faced which were expressed within three main themes: (a) Uncertainty and the unknown, (b) All-encompassing impact and (c) Finding a way forward. The synthesis demonstrated that factors associated with the condition (symptoms, behaviour and severity) had a substantial negative impact on parental outcomes, upheld by concurrent loss (deterioration and poor prognosis) and uncertainty. This substantive integrated review revealed considerable unmet parental psychosocial needs.


Assuntos
Poder Familiar , Pais , Criança , Humanos , Lisossomos , Poder Familiar/psicologia , Pais/psicologia , Pesquisa Qualitativa
3.
BMC Pregnancy Childbirth ; 22(1): 939, 2022 Dec 15.
Artigo em Inglês | MEDLINE | ID: mdl-36522706

RESUMO

BACKGROUND: Pregnancy is often conceptualised as a 'teachable moment' for health behaviour change. However, it is likely that different stages of pregnancy, and individual antenatal events, provide multiple distinct teachable moments to prompt behaviour change. Whilst previous quantitative research supports this argument, it is unable to provide a full understanding of the nuanced factors influencing eating behaviour. The aim of this study was to explore influences on women's eating behaviour throughout pregnancy. METHODS: In-depth interviews were conducted online with 25 women who were less than six-months postpartum. Interviews were audio-recorded and transcribed verbatim. Data were analysed thematically. RESULTS: Five themes were generated from the data that capture influences on women's eating behaviour throughout pregnancy: 'The preconceptual self', 'A desire for good health', 'Retaining control', 'Relaxing into pregnancy', and 'The lived environment'. CONCLUSION: Mid-pregnancy may provide a more salient opportunity for eating behaviour change than other stages of pregnancy. Individual antenatal events, such as the glucose test, can also prompt change. In clinical practice, it will be important to consider the changing barriers and facilitators operating throughout pregnancy, and to match health advice to stages of pregnancy, where possible. Existing models of teachable moments may be improved by considering the dynamic nature of pregnancy, along with the influence of the lived environment, pregnancy symptoms, and past behaviour. These findings provide an enhanced understanding of the diverse influences on women's eating behaviour throughout pregnancy and provide a direction for how to adapt existing theories to the context of pregnancy.


Assuntos
Comportamento Alimentar , Comportamentos Relacionados com a Saúde , Feminino , Gravidez , Humanos , Pesquisa Qualitativa , Período Pós-Parto
4.
BMC Pregnancy Childbirth ; 22(1): 634, 2022 Aug 10.
Artigo em Inglês | MEDLINE | ID: mdl-35948884

RESUMO

BACKGROUND: Around 1 in 150 babies are stillborn or die in the first month of life in the UK. Most women conceive again, and subsequent pregnancies are often characterised by feelings of stress and anxiety, persisting beyond the birth. Psychological distress increases the risk of poor pregnancy outcomes and longer-term parenting difficulties. Appropriate emotional support in subsequent pregnancies is key to ensure the wellbeing of women and families. Substantial variability in existing care has been reported, including fragmentation and poor communication. A new care package improving midwifery continuity and access to emotional support during subsequent pregnancy could improve outcomes. However, no study has assessed the feasibility of a full-scale trial to test effectiveness in improving outcomes and cost-effectiveness for the National Health Service (NHS). METHODS: A prospective, mixed-methods pre-and post-cohort study, in two Northwest England Maternity Units. Thirty-eight women, (≤ 20 weeks' gestation, with a previous stillbirth, or neonatal death) were offered the study intervention (allocation of a named midwife care coordinator and access to group and online support). Sixteen women receiving usual care were recruited in the 6 months preceding implementation of the intervention. Outcome data were collected at 2 antenatal and 1 postnatal visit(s). Qualitative interviews captured experiences of care and research processes with women (n = 20), partners (n = 5), and midwives (n = 8). RESULTS: Overall recruitment was 90% of target, and 77% of women completed the study. A diverse sample reflected the local population, but non-English speaking was a barrier to participation. Study processes and data collection methods were acceptable. Those who received increased midwifery continuity valued the relationship with the care coordinator and perceived positive impacts on pregnancy experiences. However, the anticipated increase in antenatal continuity for direct midwife contacts was not observed for the intervention group. Take-up of in-person support groups was also limited. CONCLUSIONS: Women and partners welcomed the opportunity to participate in research. Continuity of midwifery care was supported as a beneficial strategy to improve care and support in pregnancy after the death of a baby by both parents and professionals. Important barriers to implementation included changes in leadership, service pressures and competing priorities. TRIAL REGISTRATION: ISRCTN17447733 first registration 13/02/2018.


Assuntos
Serviços de Saúde Materna , Tocologia , Morte Perinatal , Estudos de Coortes , Procedimentos Clínicos , Estudos de Viabilidade , Feminino , Humanos , Recém-Nascido , Tocologia/métodos , Morte Perinatal/prevenção & controle , Gravidez , Cuidado Pré-Natal/métodos , Estudos Prospectivos , Medicina Estatal , Natimorto/psicologia
5.
J Gambl Stud ; 38(4): 1503-1528, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35239076

RESUMO

BACKGROUND: Adolescent gambling can lead to significant harms, yet participation rates continue to rise. Interventions targeting gambling reduction have been implemented in this population. However, it is not clear which behavior change techniques (BCTs) and modes of delivery (MOD) are most effective at reducing gambling. OBJECTIVE: The objective of the study was to identify 'promising' BCTs and MODs by systematically reviewing interventions targeting adolescent gambling behavior. 'Promising' was defined as those present in at least 25% of all interventions and in at least two effective interventions. METHODS: Three databases were searched (PsycINFO, Medline, and Scopus) from database inception to May 2021. Interventions were eligible if they were randomized controlled trials; targeting adolescents (aged 10-25 years); and assessing gambling behavior post-intervention. BCTs were identified using the Behavior Change Technique Taxonomy v1. RESULTS: From the initial 3,315 studies, the removal of duplicates and ineligible articles resulted in sixteen studies included in the review. Eleven of these reported successfully reducing gambling behavior. Eighteen BCTs and six MODs were used across the interventions. The BCTs identified as promising were '4.2. Information about antecedents', '4.4. Behavioral experiments', '5.3. Information about social and environmental consequences', and '5.6. Information about emotional consequences'. Promising MODs were 'face-to-face', 'computer', and 'playable electronic storage'. CONCLUSIONS: The study reviewed the content of interventions targeting adolescent gambling behavior. Four BCTs were identified as promising and should therefore be adopted in future interventions. To facilitate the delivery of these techniques, the study also identified three promising MODs. Interventions developed using these BCTs and MODs may successfully reduce adolescent gambling behavior.


Assuntos
Jogo de Azar , Adolescente , Humanos , Terapia Comportamental/métodos , Jogo de Azar/psicologia , Ensaios Clínicos Controlados Aleatórios como Assunto
6.
Gastroenterology ; 158(6): 1597-1610.e7, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-31987796

RESUMO

BACKGROUND & AIMS: Dysbiosis of the intestinal microbiota has been associated with nonalcoholic fatty liver disease (NAFLD). We investigated whether administration of a synbiotic combination of probiotic and prebiotic agents affected liver fat content, biomarkers of liver fibrosis, and the composition of the fecal microbiome in patients with NAFLD. METHODS: We performed a double-blind phase 2 trial of 104 patients with NAFLD in the United Kingdom. Participants (mean age, 50.8 ± 12.6 years; 65% men; 37% with diabetes) were randomly assigned to groups given the synbiotic agents (fructo-oligosaccharides, 4 g twice per day, plus Bifidobacterium animalis subspecies lactis BB-12; n = 55) or placebo (n = 49) for 10-14 months. Liver fat content was measured at the start and end of the study by magnetic resonance spectroscopy, and liver fibrosis was determined from a validated biomarker scoring system and vibration-controlled transient elastography. Fecal samples were collected at the start and end of the study, the fecal microbiome were analyzed by 16S ribosomal DNA sequencing. RESULTS: Mean baseline and end-of-study magnetic resonance spectroscopy liver fat percentage values were 32.3% ± 24.8% and 28.5% ± 20.1% in the synbiotic group and 31.3% ± 22% and 25.2% ± 17.2% in the placebo group. In the unadjusted intention-to-treat analysis, we found no significant difference in liver fat reduction between groups (ß = 2.8; 95% confidence interval, -2.2 to 7.8; P = .30). In a fully adjusted regression model (adjusted for baseline measurement of the outcome plus age, sex, weight difference, and baseline weight), only weight loss was associated with a significant decrease in liver fat (ß = 2; 95% confidence interval, 1.5-2.6; P = .03). Fecal samples from patients who received the synbiotic had higher proportions of Bifidobacterium and Faecalibacterium species, and reductions in Oscillibacter and Alistipes species, compared with baseline; these changes were not observed in the placebo group. Changes in the composition of fecal microbiota were not associated with liver fat or markers of fibrosis. CONCLUSIONS: In a randomized trial of patients with NAFLD, 1 year of administration of a synbiotic combination (probiotic and prebiotic) altered the fecal microbiome but did not reduce liver fat content or markers of liver fibrosis. (ClinicalTrials.gov, Number: NCT01680640).


Assuntos
Disbiose/dietoterapia , Microbioma Gastrointestinal/efeitos dos fármacos , Fígado/efeitos dos fármacos , Hepatopatia Gordurosa não Alcoólica/dietoterapia , Simbióticos/administração & dosagem , Adulto , Bifidobacterium animalis , Biomarcadores/análise , Biópsia , Método Duplo-Cego , Disbiose/complicações , Técnicas de Imagem por Elasticidade , Fezes/microbiologia , Feminino , Humanos , Lipídeos/análise , Fígado/química , Fígado/diagnóstico por imagem , Fígado/patologia , Cirrose Hepática/prevenção & controle , Espectroscopia de Ressonância Magnética , Masculino , Pessoa de Meia-Idade , Hepatopatia Gordurosa não Alcoólica/microbiologia , Hepatopatia Gordurosa não Alcoólica/patologia , Oligossacarídeos/administração & dosagem , Estudo de Prova de Conceito , Reino Unido
7.
BMC Pregnancy Childbirth ; 21(1): 818, 2021 Dec 10.
Artigo em Inglês | MEDLINE | ID: mdl-34886815

RESUMO

BACKGROUND: The grief associated with the death of a baby is enduring, however most women embark on another pregnancy, many in less than a year following their loss. Symptoms of anxiety and depression are reported to be increased in pregnancies after perinatal death, although effect on maternal stress is less clear. Variation between individual studies may result from differences in gestation at sampling, the questionnaire used and the type of antecedent perinatal death. We aimed to describe quantitative measures of anxiety, depression, stress and quality of life at different timepoints in pregnancies after perinatal death and in the early postnatal period. METHODS: Women recruited from three sites in the North-West of England. Women were asked to participate if a previous pregnancy had ended in a perinatal death. Participants completed validated measures of psychological state (Cambridge Worry Score, Edinburgh Postnatal Depression Score (EPDS), Generalized Anxiety Disorder 7-item score) and health status (EQ-5D-5L™ and EQ5D-Visual Analogue Scale) at three time points, approximately 15 weeks' and 32 weeks' gestation and 6 weeks postnatally. A sample of hair was taken at approximately 36 weeks' gestation for measurement of hair cortisol in a subgroup of women. The hair sample was divided into samples from each trimester and cortisol measured by ELISA. RESULTS: In total 112 women participated in the study. Measures of anxiety and depressive symptoms decreased from the highest levels at 15 weeks' gestation to 6-weeks postnatal (for example mean GAD-7: 15 weeks 8.2 ± 5.5, 6 weeks postnatal 4.4 ± 5.0, p<0.001). Hair cortisol levels fell in a similar profile to anxiety and depression symptoms (p<0.05). In contrast, the median EQ-5D index, measuring health status was 0.768 at 15 weeks' gestation (Interquartile range (IQR) 0.684-0.879), 0.696 at 32 weeks' (IQR 0.637-0.768) and 0.89 (0.760-1.00) at 6 weeks postnatal. There was a negative relationship between EPDS and perceived health status. CONCLUSIONS: This study demonstrated heightened anxiety and depressive symptoms and elevated cortisol levels in women in pregnancies after a stillbirth or neonatal death which decrease as pregnancy progresses. Further studies are needed to determine optimal care for women to address these negative psychological consequences.


Assuntos
Ansiedade/psicologia , Depressão/psicologia , Morte Perinatal , Gestantes/psicologia , Qualidade de Vida , Natimorto/psicologia , Estresse Psicológico , Adulto , Estudos de Coortes , Inglaterra/epidemiologia , Feminino , Idade Gestacional , Análise do Cabelo , Humanos , Hidrocortisona/análise , Pessoa de Meia-Idade , Gravidez , Trimestres da Gravidez , Escalas de Graduação Psiquiátrica , Inquéritos e Questionários
8.
BMC Pregnancy Childbirth ; 20(1): 54, 2020 Jan 31.
Artigo em Inglês | MEDLINE | ID: mdl-32000706

RESUMO

BACKGROUND: Physical activity (PA) tends to decline during pregnancy, and remains low in the early postpartum period, despite the known physical and psychological benefits. This study aimed to explore: (1) women's experiences of PA during pregnancy and following birth; and (2) decision-making processes related to PA during this time. METHODS: Semi-structured telephone interviews were conducted with 16 women who were either pregnant or had recently given birth. Interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: There were two over-arching themes: (1) ownership of body, which consisted of the sub-themes: others try to take ownership, important to maintain fitness into pregnancy and motherhood, expectations of PA, and pressure to conform; and (2) unknown territory, which consisted of the sub-themes: engaging in PA with caution, and unclear advice. Decision-making about PA during pregnancy was influenced by: pressure from others who felt responsible to protect the woman from coming to harm; pressure from social media to lose weight postpartum; participant's beliefs about the benefits of maintaining fitness and participants expectations of how active they thought they would be able to be during pregnancy. Participants felt that pregnancy was an 'unknown territory' in terms of the unfamiliar feelings in their body and the inability to continually monitor their baby for reassurance of baby's health. Advice received from midwives was often lacking, or not tailored to the individual. Advice from friends and family was often regarded as incorrect, but still caused doubt and fear of PA during pregnancy. CONCLUSIONS: These findings contribute to the understanding of women's experiences of PA during pregnancy and post-partum, and their decision-making processes about PA during pregnancy. Developing accurate and tailored advice as part of midwifery care, that considers the physical and psychological aspects of engaging in PA during pregnancy, will help to ensure that women are supported to make informed decisions about their PA behaviour.


Assuntos
Tomada de Decisões , Exercício Físico/psicologia , Período Pós-Parto/psicologia , Gestantes/psicologia , Adolescente , Adulto , Inglaterra , Feminino , Humanos , Entrevistas como Assunto , Influência dos Pares , Gravidez , Pesquisa Qualitativa , Conformidade Social , Incerteza , Adulto Jovem
9.
J Reprod Infant Psychol ; 38(4): 378-394, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-31795728

RESUMO

OBJECTIVE: This study explored what support male partners of women admitted to Mother and Baby Units (MBUs) wanted. BACKGROUND: Although research has highlighted the need to support male partners of women admitted to specialist MBUs, little is known about the type of support men want and how they wish support to be delivered. METHODS: Ten men whose partner was admitted to a MBU in the United Kingdom or Australia participated in semi-structured interviews. Data were analysed using Thematic Analysis. RESULTS: Five themes were identified: (1) A smoother journey to and from the MBU, (2) Feeling included, (3) Uncertainty about 'what is going on', (4) Barriers to support and (5) Facilitators of support. CONCLUSION: This is the first qualitative study to specifically explore the type of support male partners of MBU patients would like in terms of content, delivery and timing. Participants expressed the need to be involved in care decisions regarding their spouse and infant and to be offered advice from professionals. They highlighted barriers to accessing support and offered solutions to minimise those. In terms of clinical implications, we recommend a support package, which could be developed for MBUs to improve outcomes for male partners and their family.


Assuntos
Pai/psicologia , Mães/psicologia , Cuidado Pós-Natal/psicologia , Sistemas de Apoio Psicossocial , Cônjuges/psicologia , Adulto , Feminino , Humanos , Recém-Nascido , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Relações Mãe-Filho , Quartos de Pacientes , Pesquisa Qualitativa
10.
Ann Behav Med ; 53(5): 442-452, 2019 03 28.
Artigo em Inglês | MEDLINE | ID: mdl-30052699

RESUMO

BACKGROUND: Self-incentives offer a plausible alternative to paying smokers to quit but have not yet been tested in a randomized controlled trial. PURPOSE: The present study tested whether, compared with a control group, prompting smokers explicitly to self-incentivize if they abstain from smoking for a week or a month encouraged sustained abstinence. METHOD: One hundred and fifty-nine smokers were recruited from stop smoking clinics and randomized to an active control condition (asked to form a plan to quit, n = 65) or one of two intervention conditions in which they were asked to form implementation intentions designed to ensure that they incentivized themselves if they had not smoked at all by the end of (a) the week (n = 44) or (b) the month (n = 50). The main outcome measure was self-reported abstinence at 3- and 6-month follow-ups, which was biochemically verified at baseline and in a subsample at 3-month follow-up. RESULTS: At 3-month follow-up, 34% (15/44; p < .05, d = 0.45) and 36% (18/50; p < .05, d = 0.49) of smokers abstained in the weekly and monthly self-incentivizing conditions respectively, compared with 15% (10/65) in the control. The same pattern of findings was observed at 6-month follow-up: 30% (13/44; p < .05, d = 0.35), 34% (17/50; p < .05, d = 0.45) and 15% (10/65) of smokers remained abstinent in the two intervention groups and control group, respectively. CONCLUSIONS: Ensuring that smokers self-incentivized boosted significantly the effectiveness of the stop smoking program. Self-incentivizing implementation intentions could be implemented at low cost with high public health "reach" to change many health behaviors beyond smoking. TRIAL REGISTRATION: ISRCTN11610200.


Assuntos
Comportamentos Relacionados com a Saúde , Motivação , Avaliação de Processos e Resultados em Cuidados de Saúde , Recompensa , Abandono do Hábito de Fumar/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Serviços de Saúde Comunitária , Inglaterra , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Desenvolvimento de Programas , Adulto Jovem
11.
Ann Behav Med ; 53(9): 801-815, 2019 08 16.
Artigo em Inglês | MEDLINE | ID: mdl-30534971

RESUMO

BACKGROUND: Self-efficacy is an important determinant of physical activity but it is unclear how best to increase self-efficacy for physical activity and to maintain these changes. PURPOSE: This systematic review aimed to identify which specific behavior change techniques (BCTs), BCT clusters, and number of BCTs were associated with changes in postintervention and maintained changes in self-efficacy for physical activity across all adult populations. METHODS: A systematic search yielded 180 randomized trials (204 comparisons) which reported changes in self-efficacy. BCTs were coded using the BCT Taxonomy v1. Hierarchical cluster analysis explored the clustering of BCTs. Meta-analyses and moderator analyses examined whether the presence and absence of individual BCTs in interventions were associated with effect-size changes for self-efficacy. RESULTS: Small intervention effects were found for postintervention self-efficacy for physical activity (d = 0.26; 95% CI: [0.21, 0.31]; I2 = 75.8 per cent). "Information about social, environmental, and emotional consequences" was associated with higher effect sizes, whereas "social support (practical)" was associated with lower effect sizes. Small and nonsignificant effects were found for maintained changes in self-efficacy for physical activity (d = 0.08; CI: [-0.05, 0.21]; I2 = 83.8 per cent). Lack of meaningful clustering of BCTs was found. A significant positive relationship was found between number of BCTs and effect sizes for maintained changes in self-efficacy for physical activity. CONCLUSIONS: There does not appear to be a single effective approach to change self-efficacy for physical activity in all adults: different approaches are required for different populations. Interventions with more BCTs seem more effective at maintaining changes in self-efficacy for physical activity.


Assuntos
Terapia Comportamental , Exercício Físico , Comportamentos Relacionados com a Saúde , Avaliação de Processos e Resultados em Cuidados de Saúde , Autoeficácia , Humanos
12.
Matern Child Health J ; 23(5): 648-656, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-30610528

RESUMO

Objectives Women with a BMI ≥ 30 kg/m2 are less likely to initiate and maintain breastfeeding compared to women with a BMI ≤ 30 kg/m2. Reasons for this disparity are not understood. Therefore, this qualitative interview study aimed to learn from women with a BMI ≥ 30 kg/m2 who have breastfed. Methods Eighteen women participated in a semi-structured telephone interview. Participants were required to have had a BMI ≥ 30 kg/m2 at the start of their pregnancy, and have breastfed and/or be currently breastfeeding. An inductive thematic analysis was used to analyze data. Results Two themes were identified: 'personal control over breastfeeding behavior' and 'realistic expectations of the breastfeeding journey'. To achieve their breastfeeding goals, women described the importance of feeling in control of their behaviors, and having realistic expectations, when facing social and practical barriers. They gained this control and formed realistic expectations by seeking support and information. In particular, gaining support from other breastfeeding women with a BMI ≥ 30 kg/m2, and information about alternative positioning, and compatible clothing and nutrition helped women to breastfeed. Conclusions for Practice Having adequate information and support in order to feel in control of breastfeeding behavior and form realistic expectations are vital contributors to breastfeeding behaviors in women with a BMI ≥ 30 kg/m2. Future work is necessary to develop suitable interventions and to investigate their feasibility.


Assuntos
Aleitamento Materno/métodos , Mães/psicologia , Obesidade/psicologia , Adulto , Índice de Massa Corporal , Inglaterra , Feminino , Humanos , Entrevistas como Assunto/métodos , Mães/educação , Autonomia Pessoal , Gravidez , Pesquisa Qualitativa
13.
BMC Med Ethics ; 20(1): 56, 2019 08 08.
Artigo em Inglês | MEDLINE | ID: mdl-31395047

RESUMO

BACKGROUND: Information on the factors influencing parents' decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to explore the influencing factors for parents considering termination or continuation of pregnancy following identification of lethal, life-limiting or severely debilitating fetal abnormalities. METHODS: Electronic searches of 13 databases were conducted. These searches were supplemented by hand-searching Google Scholar and bibliographies and citation tracing. Thomas and Harden's (2008) thematic synthesis method was used to synthesise data from identified studies. RESULTS: Twenty-four papers were identified and reviewed, but two papers were removed following quality assessment. Three main themes were identified through systematic synthesis. Theme 1, entitled 'all life is precious', described parents' perception of the importance of the fetus' life, a fatalistic view of their situation alongside moral implications as well as the implications decisions would have on their own life, in consideration of previous life experiences. Theme 2 ('hope for a positive outcome') contained two sub-themes which considered the parent's own imagined future and the influence of other people's experiences. Finally, Theme 3 ('a life worth living') presented three sub-themes which may influence their parental decision-making: These described parental consideration of the quality of life for their unborn child, the possibility of waiting to try for another pregnancy, and their own responsibilities and commitments. CONCLUSION: The first review to fully explore parental decision-making process following lethal, life-limiting, or severely debilitating prenatal diagnosis provided novel findings and insight into which factors influenced parents' decision-making process. This comprehensive and systematic review provides greater understanding of the factors influential on decision-making, such as hope, morality and potential implications on their own and other's quality of life, will enable professionals to facilitate supported decision-making, including greater knowledge of the variables likely to influence parental choices.


Assuntos
Tomada de Decisões/ética , Pais/psicologia , Diagnóstico Pré-Natal/ética , Aborto Induzido/ética , Família , Feminino , Previsões , Humanos , Gravidez
14.
Matern Child Nutr ; 15(3): e12813, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-30901509

RESUMO

Breastfeeding has copious health benefits for both mother and child, but rates of initiation and maintenance among women with a body mass index (BMI) ≥ 30 kg m2 are low. Few interventions aiming to increase these rates have been successful, suggesting that breastfeeding behaviour in this group is not fully understood. Therefore, this review aimed to systematically identify and synthesise the qualitative literature that explored the perceptions and experiences of women with a BMI ≥ 30 kg m2 who breastfed. The search identified five eligible papers, and a meta-ethnographic approach was taken to synthesise the findings. One theme was identified: "weight amplifies breastfeeding difficulties," revealing that women with a BMI ≥ 30 kg m2 experience common breastfeeding difficulties to a greater degree. In particular, women with a BMI ≥ 30 kg m2 struggle with the impact of medical intervention, doubt their ability to breastfeed, and need additional support. These findings can inform understanding of breastfeeding models, future research directions, intervention development, and antenatal and post-natal care for women with a BMI ≥ 30 kg m2 .


Assuntos
Índice de Massa Corporal , Aleitamento Materno/psicologia , Comportamento Materno/psicologia , Obesidade/psicologia , Período Pós-Parto/psicologia , Atitude do Pessoal de Saúde , Feminino , Humanos , Período Pós-Parto/fisiologia , Gravidez , Pesquisa Qualitativa
15.
J Genet Couns ; 27(5): 1074-1086, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29468336

RESUMO

Phenylketonuria (PKU) is a rare inherited metabolic disorder which can cause neurological damage if left untreated. PKU is identified through newborn screening in developed countries, and treatment begins immediately to prevent these severe consequences. When a child is diagnosed, parents must assume immediate responsibility for the management of PKU and prevention of neurological damage. Quantitative studies have identified significant psychosocial stressors for parents, but little is known about how the parents experience this process. This study aimed to explore the experiences of parents of children with PKU under the age of two. It is the first study to examine these experiences in this way. Seven parents were interviewed about their experiences, and interpretative phenomenological analysis was used to analyse the data. Three main themes were identified: control, striving for normality and acceptance of PKU as a continuum. Links between the themes and processes underpinning the results were explored with relation to existing literature and theories from a clinical psychology perspective. The role of acceptance of PKU was central to the parent's experiences. Clinical implications and suggestions for further research are discussed.


Assuntos
Pai/psicologia , Mães/psicologia , Poder Familiar , Fenilcetonúrias/terapia , Adaptação Psicológica , Adulto , Inglaterra , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Fenilcetonúrias/psicologia
16.
Emerg Infect Dis ; 23(7): 1148-1154, 2017 07.
Artigo em Inglês | MEDLINE | ID: mdl-28628460

RESUMO

Legionella longbeachae, found in soil and compost-derived products, is a globally underdiagnosed cause of Legionnaires' disease. We conducted a case-control study of L. longbeachae Legionnaires' disease in Canterbury, New Zealand. Case-patients were persons hospitalized with L. longbeachae pneumonia, and controls were persons randomly sampled from the electoral roll for the area served by the participating hospital. Among 31 cases and 172 controls, risk factors for Legionnaires' disease were chronic obstructive pulmonary disease, history of smoking >10 years, and exposure to compost or potting mix. Gardening behaviors associated with L. longbeachae disease included having unwashed hands near the face after exposure to or tipping and troweling compost or potting mix. Mask or glove use was not protective among persons exposed to compost-derived products. Precautions against inhaling compost and attention to hand hygiene might effectively prevent L. longbeachae disease. Long-term smokers and those with chronic obstructive pulmonary disease should be particularly careful.


Assuntos
Legionella longbeachae , Legionelose/epidemiologia , Legionelose/microbiologia , Estudos de Casos e Controles , Comorbidade , Meio Ambiente , Humanos , Nova Zelândia/epidemiologia , Vigilância da População , Fatores de Risco , Fumar
17.
Clin Psychol Psychother ; 24(2): 392-400, 2017 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26936253

RESUMO

OBJECTIVE: To explore the construal of midwives by pregnant women with a body mass index greater than 30 kg/m2 (BMI ≥ 30 kg/m2 ). METHOD: Ten pregnant women with a BMI ≥ 30 kg/m2 were recruited from antenatal clinics at a maternity hospital in the North West of England. Each participant completed a repertory grid. The participants chose people to match roles including themselves, pregnant women, midwives of different BMIs and hypothetical elements. They also generated psychological constructs to describe them. RESULTS: Pregnant women with a BMI ≥ 30 kg/m2 construed themselves as vulnerable and self-conscious. Some women endorsed obesity-related stereotypes for themselves and felt responsible for their weight. The midwife with a BMI 18 < 30 kg/m2 was considered to be most similar to the ideal midwife, while the midwife with a BMI ≤ 18 kg/m2 was construed as having an undesirable interpersonal style. The midwife with a BMI ≥ 40 kg/m2 was often construed as sharing similar experiences to the pregnant women with a BMI ≥ 30 kg/m2 , such as struggling with the psychological consequences of a raised BMI. Some women construed the midwife with a BMI 30 < 40 kg/m2 in a positive way, whereas others viewed it as sharing similar feelings about weight as the midwife with a BMI ≥ 40 kg/m2 . CONCLUSIONS: The pregnant women with a BMI ≥ 30 kg/m2 in this study described perceptions of themselves and the midwives responsible for their care, which may affect their engagement and satisfaction with services. Pregnant women with a BMI ≥ 30 kg/m2 should be involved in service development activities to ensure the structure of services and the language used by midwives are acceptable and do not confirm weight-related stereotypes. Copyright © 2016 John Wiley & Sons, Ltd. KEY PRACTITIONER MESSAGE: Pregnant women with a BMI ≥ 30 kg/m2 construe themselves as vulnerable and self-conscious and perceive themselves responsible for their weight. Pregnant women with a BMI ≥ 30 kg/m2 construe midwives with a low BMI as having an undesirable, cold, interpersonal style. Midwives with a raised BMI are construed as similar to the women, because they share the uncomfortable psychological consequences of a raised BMI. The nature of pregnant women's construal may affect their engagement and satisfaction with maternity services and midwifery care.


Assuntos
Índice de Massa Corporal , Tocologia/estatística & dados numéricos , Obesidade/psicologia , Complicações na Gravidez/psicologia , Relações Profissional-Paciente , Inglaterra , Feminino , Humanos , Gravidez
18.
J Reprod Infant Psychol ; 35(4): 380-393, 2017 09.
Artigo em Inglês | MEDLINE | ID: mdl-29517371

RESUMO

OBJECTIVE: The current study aimed to explore student midwives' awareness, knowledge, and experiences of supporting women with antenatal anxiety (ANA) within clinical practice. BACKGROUND: ANA is associated with negative outcomes for mother and baby. Midwives play a key role in the screening of antenatal mental health and care of women suffering from ANA. METHODS: This study was conducted with student midwives at one UK university in the north-west of England. Twenty-five midwifery students completed a brief online survey informed by National Institute of Health and Care Excellence (NICE) guidelines. Of these, seven volunteered to participate in semi-structured interviews exploring the survey data. The interview topic guide was designed based on the findings of the survey. RESULTS: Thematic analysis of the seven interviews revealed four overarching themes: Perpetuating factors, Barriers to care, Skills required in role and Suggestions for future directions. Midwives had a varied knowledge and understanding of ANA and expressed a desire to learn more about their role in supporting women with ANA. CONCLUSION: Although a small study, the results highlight the need for education to be improved in order to best prepare student midwives for cases of ANA, with emphasis on integrating psychology and mental health information into teaching as well as time spent in clinical practice. Midwives are key in the screening of women for ANA and are in an ideal position to signpost for specialist care.


Assuntos
Ansiedade/psicologia , Conscientização , Conhecimentos, Atitudes e Prática em Saúde , Tocologia/educação , Enfermeiros Obstétricos/educação , Cuidado Pré-Natal/métodos , Estudantes de Enfermagem/psicologia , Adulto , Inglaterra , Feminino , Humanos , Internet , Programas de Rastreamento , Gravidez , Pesquisa Qualitativa , Inquéritos e Questionários , Adulto Jovem
19.
J Perianesth Nurs ; 32(1): 6-14, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-28212912

RESUMO

Pulmonary embolism (PE) is a complication that can occur at any time during the perioperative period. The patient undergoing surgery to repair a hip fracture is at a high risk of developing a PE due to venous thrombosis, tissue, or fat emboli. The signs and symptoms of a PE are often nonspecific and can be obscured in the patient receiving or recovering from general anesthesia. This case study describes the presentation, diagnosis, and treatment of a patient experiencing a pulmonary embolism in the postanesthesia care unit (PACU) after surgery to repair a hip fracture.


Assuntos
Enfermagem em Pós-Anestésico , Embolia Pulmonar/cirurgia , Sala de Recuperação , Anestesia Geral , Anticoagulantes/uso terapêutico , Artroplastia de Quadril/efeitos adversos , Humanos , Embolia Pulmonar/tratamento farmacológico , Embolia Pulmonar/etiologia , Fatores de Risco
20.
Hum Genomics ; 9: 25, 2015 Oct 07.
Artigo em Inglês | MEDLINE | ID: mdl-26446085

RESUMO

BACKGROUND: Facioscapulohumeral dystrophy (FSHD) is commonly associated with contraction of the D4Z4 macro-satellite repeat on chromosome 4q35 (FSHD1) or mutations in the SMCHD1 gene (FSHD2). Recent studies have shown that the clinical manifestation of FSHD1 can be modified by mutations in the SMCHD1 gene within a given family. The absence of either D4Z4 contraction or SMCHD1 mutations in a small cohort of patients suggests that the disease could also be due to disruption of gene regulation. In this study, we postulated that mutations responsible for exerting a modifier effect on FSHD might reside within remotely acting regulatory elements that have the potential to interact at a distance with their cognate gene promoter via chromatin looping. To explore this postulate, genome-wide Hi-C data were used to identify genomic fragments displaying the strongest interaction with the SMCHD1 gene. These fragments were then narrowed down to shorter regions using ENCODE and FANTOM data on transcription factor binding sites and epigenetic marks characteristic of promoters, enhancers and silencers. RESULTS: We identified two regions, located respectively ~14 and ~85 kb upstream of the SMCHD1 gene, which were then sequenced in 229 FSHD/FSHD-like patients (200 with D4Z4 repeat units <11). Three heterozygous sequence variants were found ~14 kb upstream of the SMCHD1 gene. One of these variants was found to be of potential functional significance based on DNA methylation analysis. Further functional ascertainment will be required in order to establish the clinical/functional significance of the variants found. CONCLUSIONS: In this study, we propose an improved approach to predict the possible locations of remotely acting regulatory elements that might influence the transcriptional regulation of their associated gene(s). It represents a new way to screen for disease-relevant mutations beyond the immediate vicinity of the specific disease gene. It promises to be useful for investigating disorders in which mutations could occur in remotely acting regulatory elements.


Assuntos
Proteínas Cromossômicas não Histona/genética , Metilação de DNA/genética , Distrofia Muscular Facioescapuloumeral/genética , Sequências Reguladoras de Ácido Nucleico/genética , Sequência de Bases , Simulação por Computador , Epigênese Genética , Feminino , Humanos , Masculino , Distrofia Muscular Facioescapuloumeral/patologia , Mutação/genética , Linhagem
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