Consent and refusal of procedures during labour and birth: a survey among 11 418 women in the Netherlands

Informed consent for medical interventions is ethically and legally required; an important aspect of quality and safety in healthcare; and essential to person-centred care. During labour and birth, respecting consent requirements, including respecting refusal, can contribute to a higher sense of choice and control for labouring women. This study examines (1) to what extent and for which procedures during labour and birth women report that consent requirements were not met and/or inadequate information was provided, (2) how frequently women consider consent requirements not being met upsetting and (3) which personal characteristics are associated with the latter. A national cross-sectional survey was conducted in the Netherlands among women who gave birth up to 5 years previously. Respondents were recruited through social media with the help of influencers and organisations. The survey focused on 10 common procedures during labour and birth, investigating for each procedure if respondents were offered the procedure, if they consented or refused, if the information provision was sufficient and if they underwent unconsented procedures, whether they found this upsetting. 13 359 women started the survey and 11 418 met the inclusion and exclusion criteria. Consent not asked was most often reported by respondents who underwent postpartum oxytocin (47.5%) and episiotomy (41.7%). Refusal was most often over-ruled when performing augmentation of labour (2.2%) and episiotomy (1.9%). Information provision was reported inadequate more often when consent requirements were not met compared with when they were met. Multiparous women had decreased odds of reporting unmet consent requirements compared with primiparous (adjusted ORs 0.54-0.85). There was considerable variation across procedures in how frequently not meeting consent requirements was considered upsetting. Consent for performing a procedure is frequently absent in Dutch maternity care. In some instances, procedures were performed in spite of the woman's refusal. More awareness is needed on meeting necessary consent requirements in order to achieve person-centred and high-quality care during labour and birth

Symptom-led staging for semantic and non-fluent/agrammatic variants of primary progressive aphasia

INTRODUCTION: Here we set out to create a symptom-led staging system for the canonical semantic and non-fluent/agrammatic variants of primary progressive aphasia (PPA), which present unique diagnostic and management challenges not well captured by functional scales developed for Alzheimer's disease and other dementias. METHODS: An international PPA caregiver cohort was surveyed on symptom development under six provisional clinical stages and feedback was analyzed using a mixed-methods sequential explanatory design. RESULTS: Both PPA syndromes were characterized by initial communication dysfunction and non-verbal behavioral changes, with increasing syndromic convergence and functional dependency at later stages. Milestone symptoms were distilled to create a prototypical progression and severity scale of functional impairment: the PPA Progression Planning Aid ("PPA-Squared"). DISCUSSION: This work introduces a symptom-led staging scheme and functional scale for semantic and non-fluent/agrammatic variants of PPA. Our findings have implications for diagnostic and care pathway guidelines, trial design, and personalized prognosis and treatment for PPA. HIGHLIGHTS: We introduce new symptom-led perspectives on primary progressive aphasia (PPA). The focus is on non-fluent/agrammatic (nfvPPA) and semantic (svPPA) variants. Foregrounding of early and non-verbal features of PPA and clinical trajectories is featured. We introduce a symptom-led staging scheme for PPA. We propose a prototype for a functional impairment scale, the PPA Progression Planning Aid

A controlled clinical application of motor learning principles with apraxia of speech

Adults with acquired apraxia of speech (AOS) often do not generalise effects of treatment to untreated speech behaviours. Recent studies suggest that using the principles of motor learning (PML) approach may optimise retention and generalisation in AOS. PML guide the structure of motor practice along with the frequency and type of feedback provided during practice. This study aimed to investigate the effects of order of stimulus presentation and feedback frequency, on the acquisition, retention, and generalisation of speech skills in persons with acquired AOS plus aphasia. Four participants with AOS participated in a crossover design with multiple baselines across behaviours to compare two sets of motor learning principles– random order of stimulus presentation with low frequency feedback (R-L) ), considered more beneficial for learning, versus blocked order with high frequency feedback, considered less beneficial. All participants demonstrated significantly improved performance with treated words for both treatment regimes, both throughout treatment and on retention probes. There was a trend for better retention for some participants following the R-L condition. Performance data from treatment sessions did not support more rapid acquisition under either regime. Three of four participants showed generalisation of treatment effects to untreated related words, regardless of treatment conditions. Consistent with previous studies, individuals with chronic AOS responded positively to articulation-based intervention. The limited difference between the treatment conditions tested here suggests that the practice schedule and feedback frequency may be less important than the amount of practice provided; although the interaction of these principles and treatment dosage with other factors such as disorder severity require further investigation

Speech pathology services for primary progressive aphasia : exploring an emerging area of practice

Background: Primary progressive aphasia (PPA) is a clinical dementia syndrome characterised by the gradual dissolution of language without impairment of other cognitive domains for at least the first 2 years of illness (Mesulam, 2001). In recent years the authors had observed an increase in the number of referrals of individuals with a queried diagnosis of PPA to their speech pathology service. However, they perceived a lack of information on the best management path for these individuals. Aims: The aim of this study was to collate information about current service provision for clients with PPA living in the Australian state of New South Wales (NSW) and their caregivers. This information would identify current referral rates and speech pathology management of this population. This information, when combined with a review of the literature and an examination of overseas service provision, would be used to develop a framework for future speech pathology service provision for progressive aphasia. Method & Procedures: Data relating to individuals with queried or confirmed PPA was collected from speech pathologists via a survey. Speech pathology services with an adult neurological caseload were surveyed in rural and metropolitan regions across NSW. Questions asked for information relating to referral patterns, demographics, and interventions provided. Outcomes & Results: Responses from the survey indicated that only a small number of clients with PPA are referred to speech pathologists state-wide. At facilities where individuals were referred with queried PPA, all respondent speech pathologists provided some form of intervention. All clients were assessed and various intervention types were delivered including individual therapy, group therapy, intermittent review, and client and carer education. Overwhelmingly respondents talked of an emerging field of practice, and the need for more accessible information for clinicians and people with PPA and their carers. Conclusion: PPA appears to be an area of under-referral for speech pathologists in NSW. We would like to see increased referrals to speech pathology services and promotion of the role of the speech pathologist on dementia care teams. There is evidence that speech pathology intervention with this population can be effective. It is recommended that intervention targets both impairment and activity-participation levels but also we stress the importance of education and support that is specifically tailored to those with progressive language disorders.14 page(s

Disrespect and abuse during labour and birth amongst 12,239 women in the Netherlands: a national survey.: a national survey

Background: Women experience disrespect and abuse during labour and birth all over the world. While the gravity of many forms of disrespect and abuse is evident, some of its more subtle forms may not always be experienced as upsetting by women. This study examines (1) how often women experience disrespect and abuse during labour and birth in the Netherlands and (2) how frequently they consider such experiences upsetting. We also examine (3) which respondent characteristics (age, ethnicity, educational level and parity) are associated with those experiences of disrespect and abuse that are upsetting, and (4) the associations between upsetting experiences of disrespect and abuse, and women’s labour and birth experiences. Methods: Women who gave birth up to five years ago were recruited through social media platforms to participate in an online survey. The survey consisted of 37 questions about experiences of disrespect and abuse divided into seven categories, dichotomised in (1) not experienced, or experienced but not considered upsetting (2) experienced and considered upsetting. A multivariable logistic regression analysis was performed to examine associated characteristics with upsetting experiences of disrespect and abuse. A Chi-square test was used to investigate the association between upsetting experiences of disrespect and abuse and overall birth experience. Results: 13,359 respondents started the questionnaire, of whom 12,239 met the inclusion and exclusion criteria. Disrespect and abuse in terms of ‘lack of choices’ (39.8%) was reported most, followed by ‘lack of communication’ (29.9%), ‘lack of support’ (21.3%) and ‘harsh or rough treatment/physical violence’ (21.1%). Large variation was found in how frequently certain types of disrespect and abuse were considered upsetting, with 36.3% of women experiencing at least one situation of disrespect and abuse as upsetting. Primiparity and a migrant background were risk factors for experiencing upsetting disrespect and abuse in all categories. Experiencing more categories of upsetting disrespect and abuse was found to be associated with a more negative birth experience. Conclusions: Disrespectful and abusive experiences during labour and birth are reported regularly in the Netherlands, and are often (but not always) experienced as upsetting. This emphasizes an urgent need to implement respectful maternity care, even in high income countries

Left powerless: A qualitative social media content analysis of the Dutch #breakthesilence campaign on negative and traumatic experiences of labour and birth

Introduction Disrespect and abuse during labour and birth are increasingly reported all over the world. In 2016, a Dutch client organization initiated an online campaign, #genoeggezwegen (#breakthesilence) which encouraged women to share negative and traumatic maternity care experiences. This study aimed (1) to determine what types of disrespect and abuse were described in #genoeggezwegen and (2) to gain a more detailed understanding of these experiences. Methods A qualitative social media content analysis was carried out in two phases. (1) A deductive coding procedure was carried out to identify types of disrespect and abuse, using Bohren et al.’s existing typology of mistreatment during childbirth. (2) A separate, inductive coding procedure was performed to gain further understanding of the data. Results 438 #genoeggezwegen stories were included. Based on the typology of mistreatment during childbirth, it was found that situations of ineffective communication, loss of autonomy and lack of informed consent and confidentiality were most often described. The inductive analysis revealed five major themes: ‘‘lack of informed consent”; ‘‘not being taken seriously and not being listened to”; ‘‘lack of compassion”; ‘‘use of force”; and ‘‘short and long term consequences”. “Left powerless” was identified as an overarching theme that occurred throughout all five main themes. Conclusion This study gives insight into the negative and traumatic maternity care experiences of Dutch women participating in the #genoeggezwegen campaign. This may indicate that disrespect and abuse during labour and birth do happen in the Netherlands, although the current study gives no insight into prevalence. The findings of this study may increase awareness amongst maternity care providers and the community of the existence of disrespect and abuse in Dutch maternity care, and encourage joint effort on improving care both individually and systemically/institutionally

Left powerless: A qualitative social media content analysis of the Dutch #breakthesilence campaign on negative and traumatic experiences of labour and birth

IntroductionDisrespect and abuse during labour and birth are increasingly reported all over the world. In 2016, a Dutch client organization initiated an online campaign, #genoeggezwegen (#breakthesilence) which encouraged women to share negative and traumatic maternity care experiences. This study aimed (1) to determine what types of disrespect and abuse were described in #genoeggezwegen and (2) to gain a more detailed understanding of these experiences.MethodsA qualitative social media content analysis was carried out in two phases. (1) A deductive coding procedure was carried out to identify types of disrespect and abuse, using Bohren et al.’s existing typology of mistreatment during childbirth. (2) A separate, inductive coding procedure was performed to gain further understanding of the data.Results438 #genoeggezwegen stories were included. Based on the typology of mistreatment during childbirth, it was found that situations of ineffective communication, loss of autonomy and lack of informed consent and confidentiality were most often described. The inductive analysis revealed five major themes: ‘‘lack of informed consent”; ‘‘not being taken seriously and not being listened to”; ‘‘lack of compassion”; ‘‘use of force”; and ‘‘short and long term consequences”. “Left powerless” was identified as an overarching theme that occurred throughout all five main themes.ConclusionThis study gives insight into the negative and traumatic maternity care experiences of Dutch women participating in the #genoeggezwegen campaign. This may indicate that disrespect and abuse during labour and birth do happen in the Netherlands, although the current study gives no insight into prevalence. The findings of this study may increase awareness amongst maternity care providers and the community of the existence of disrespect and abuse in Dutch maternity care, and encourage joint effort on improving care both individually and systemically/institutionally

Dipeptidyl peptidase I controls survival from Klebsiella pneumoniae lung infection by processing surfactant protein D

Prior work established that a deficiency in the cysteine protease dipeptidyl peptidase I (DPPI) improves survival following polymicrobial septic peritonitis. To test whether DPPI regulates survival from severe lung infections, DPPI (−/−) mice were studied in a Klebsiella pneumonia lung infection model, finding that survival in DPPI (−/−) mice is significantly better than in DPPI (+/+) mice 8 d after infection. DPPI (−/−) mice have significantly fewer bacteria in the lung than infected DPPI (+/+) mice, but no difference in lung histopathology, lung injury, or cytokine levels. To explore mechanisms of enhanced bacterial clearance in DPPI (−/−) mice, we examined the status of pulmonary collectins, finding that levels of surfactant protein D, but not of surfactant protein A, are higher in DPPI (−/−) than in DPPI (+/+) BAL fluid, and that DPPI (−/−) BAL fluid aggregate bacteria more effectively than control BAL fluid. Sequencing of the amino terminus of surfactant protein D revealed two or eight additional amino acids in surfactant protein D isolated from DPPI (−/−) mice, suggesting processing by DPPI. These results establish that DPPI is a major determinant of survival following Klebsiella pneumoniae lung infection and suggest that the survival disadvantage in DPPI (+/+) mice is in part due to processing of surfactant protein D by DPPI