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

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

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

The bumpy road of trauma-focused treatment: Posttraumatic stress disorder symptom exacerbation in people with psychosis

Concern for symptom exacerbation and treatment drop-out is an important barrier to the implementation of trauma-focused therapy (TFT), especially in people with a psychotic disorder. This study, which was part of a multicenter randomized controlled trial, investigated posttraumatic stress disorder (PTSD) symptom exacerbation during eye movement desensitization reprocessing (EMDR) therapy and prolonged exposure (PE) in a sample of 99 participants with PTSD and psychosis. Symptom exacerbations during the first four sessions (early exacerbation) and between-session exacerbations over the course of therapy were monitored using the PTSD Symptom Scale–Self Report. Analyses of covariance and chi-square tests were conducted to investigate exacerbation rates and their associations with treatment response and drop-out. Both early exacerbation and between-session exacerbation were relatively common (32.3% and 46.5%, respectively) but were unrelated to poor treatment response or an increased likelihood of treatment drop-out. Both clinicians and patients need to be aware that symptom exacerbation during TFT is common and not related to poor outcomes. Symptom exacerbation can be part of the therapeutic process, should be acknowledged and guided, and should not be a barrier to the implementation of TFT in people with psychosis

The bumpy road of trauma-focused treatment:Posttraumatic stress disorder symptom exacerbation in people with psychosis

Concern for symptom exacerbation and treatment drop-out is an important barrier to the implementation of trauma-focused therapy (TFT), especially in people with a psychotic disorder. This study, which was part of a multicenter randomized controlled trial, investigated posttraumatic stress disorder (PTSD) symptom exacerbation during eye movement desensitization reprocessing (EMDR) therapy and prolonged exposure (PE) in a sample of 99 participants with PTSD and psychosis. Symptom exacerbations during the first four sessions (early exacerbation) and between-session exacerbations over the course of therapy were monitored using the PTSD Symptom Scale–Self Report. Analyses of covariance and chi-square tests were conducted to investigate exacerbation rates and their associations with treatment response and drop-out. Both early exacerbation and between-session exacerbation were relatively common (32.3% and 46.5%, respectively) but were unrelated to poor treatment response or an increased likelihood of treatment drop-out. Both clinicians and patients need to be aware that symptom exacerbation during TFT is common and not related to poor outcomes. Symptom exacerbation can be part of the therapeutic process, should be acknowledged and guided, and should not be a barrier to the implementation of TFT in people with psychosis

Trauma-focused therapies for post-traumatic stress in psychosis:study protocol for the RE.PROCESS randomized controlled trial

Introduction: Many people with psychotic disorders experience symptoms of post-traumatic stress disorder (PTSD). In recent years, several trauma-focused therapies (TFTs), including cognitive restructuring (CR), prolonged exposure (PE), and eye movement desensitization and reprocessing (EMDR) have been studied and found to be safe and effective in reducing PTSD symptoms in individuals with psychosis. However, studies were conducted in different countries, with varying inclusion criteria, therapy duration, control groups, and trial outcomes. RE.PROCESS will be the first study to compare the impact of CR, PE, and EMDR with a waiting list control condition within the same context. Methods and analysis: This is the protocol of a pragmatic, single-blind, multicentre, superiority randomized controlled trial, in which CR, PE, and EMDR are compared to a waiting list control condition for TFT (WL) in a naturalistic treatment setting. Inclusion criteria are as follows: age ≥ 16 years; meeting full DSM-5 diagnostic criteria for PTSD on the Clinician-Administered PTSD Scale for DSM-5 (CAPS-5), with a total CAPS score ≥ 23; and a psychotic disorder in the schizophrenia spectrum confirmed by the Structured Clinical Interview for DSM-5 (SCID-5). Participants (N=200) will be randomly allocated to 16 sessions of one of the TFTs or WL, in addition to receiving treatment as usual (TAU) for psychosis. The primary objective is to compare the effects of CR, PE, and EMDR to WL on researcher-rated severity of PTSD symptoms over time from baseline to 6-month follow-up. Secondary objectives are to examine these effects at the separate time-points (i.e., mid-treatment, post-treatment, and at 6-month follow-up) and to test the effects for clinician-rated presence of PTSD diagnosis, and self-rated severity of (complex) PTSD symptoms. Discussion: This is the first RCT to directly compare the effects of CR, PE, and EMDR within the same context to TAU on PTSD symptoms in individuals with psychosis and PTSD. Secondary effects on clinical and functional outcomes will be investigated both directly after therapy and long term. Trial registration: ISRCTN ISRCTN56150327. Registered 18 June 2019