"I fought my entire way": Experiences of declining maternity care services in British Columbia.

BACKGROUND: The 2016 WHO Standards for improving quality of maternal and newborn care in health facilities established patient experience of care as a core indicator of quality. Global health experts have described loss of autonomy and disrespect as mistreatment. Risk of disrespect and abuse is higher when patient and care provider opinions differ, but little is known about service users experiences when declining aspects of their maternity care. METHODS: To address this gap, we present a qualitative content analysis of 1540 written accounts from 892 service users declining or refusing care options throughout childbearing with a large, geographically representative sample (2900) of childbearing women in British Columbia who participated in an online survey with open-ended questions eliciting care experiences. FINDINGS: Four themes are presented: 1) Contentious interactions: "I fought my entire way", describing interactions as fraught with tension and recounting stories of "fighting" for the right to refuse a procedure/intervention; 2) Knowledge as control or as power: "like I was a dim girl", both for providers as keepers of medical knowledge and for clients when they felt knowledgeable about procedures/interventions; 3) Morbid threats: "do you want your baby to die?", coercion or extreme pressure from providers when clients declined interventions; 4) Compliance as valued: "to be a 'good client'", recounting compliance or obedience to medical staff recommendations as valuable social capital but suppressing desire to ask questions or decline care. CONCLUSION: We conclude that in situations where a pregnant person declines recommended treatment, or requests treatment that a care provider does not support, tension and strife may ensue. These situations deprioritize and decenter a woman's autonomy and preferences, leading care providers and the culture of care away from the principles of respect and person-centred care.

I felt so much conflict instead of joy: an analysis of open-ended comments from people in British Columbia who declined care recommendations during pregnancy and childbirth.

BACKGROUND: No Canadian studies to date have examined the experiences of people who decline aspects of care during pregnancy and birth. The current analysis bridges this gap by describing comments from 1123 people in British Columbia (BC) who declined a test or procedure that their care provider recommended. METHODS: In the Changing Childbirth in BC study, childbearing people designed a mixed-methods study, including a cross-sectional survey on experiences of provider-patient interactions over the course of maternity care. We conducted a descriptive quantitative content analysis of 1540 open ended comments about declining care recommendations. RESULTS: More than half of all study participants (n = 2100) declined care at some point during pregnancy, birth, or the postpartum period (53.5%), making this a common phenomenon. Participants most commonly declined genetic or gestational diabetes testing, ultrasounds, induction of labour, pharmaceutical pain management during labour, and eye prophylaxis for the newborn. Some people reported that care providers accepted or supported their decision, and others described pressure and coercion from providers. These negative interactions resulted in childbearing people feeling invisible, disempowered and in some cases traumatized. Loss of trust in healthcare providers were also described by childbearing people whose preferences were not respected whereas those who felt informed about their options and supported to make decisions about their care reported positive birth experiences. CONCLUSIONS: Declining care is common during pregnancy and birth and care provider reactions and behaviours greatly influence how childbearing people experience these events. Our findings confirm that clinicians need further training in person-centred decision-making, including respectful communication even when choices fall outside of standard care.

Shuddering attacks: A benign phenomenon in children.

QUESTION: A 2-year-old child was recently brought into my office for repeated episodes of neck stiffening and shivering movements of the shoulders and arms. The episodes last 4 to 5 seconds and occur more than 10 times per day, with no apparent pattern except increased frequency at mealtime. Although there has never been loss of consciousness, the parent was worried that these were seizures. The child was diagnosed by a neurologist as having shuddering attacks. Should I start antiepileptic medications for this child? ANSWER: Shuddering attacks are involuntary movements of the head and upper extremities that occur during normal activities and do not impair consciousness. Normal neurologic examination findings and normal electroencephalogram tracing will confirm that this child has shuddering attacks, a benign phenomenon that requires no further investigation or medical therapy. The condition is of unknown cause but is distinct from epilepsy and neither warrants nor responds to antiepileptic medications. Parents can be reassured that attacks will decrease in frequency and will spontaneously remit with age.

Les accès de frissonnement: Un phénomène bénin chez l'enfant.

QUESTION: Un enfant de 2 ans est récemment venu à ma clinique en raison d'épisodes répétés de raidissements du cou et de mouvements de frissons aux épaules et aux bras. Les épisodes durent de 4 à 5 secondes et se produisent plus de 10 fois par jour, sans modèle apparent, outre une fréquence accrue à l'heure des repas. Même s'il n'a pas eu de perte de conscience, les parents s'inquiétaient qu'il ait des convulsions. Un neurologue a diagnostiqué des accès de frissonnement. Devrais-je commencer des médicaments antiépileptiques pour cet enfant? RÉPONSE: Les accès de frissonnement sont des mouvements involontaires de la tête et des extrémités supérieures qui se produisent durant des activités normales et qui n'affectent pas la conscience. Des constatations normales à un examen neurologique et au tracé d'un électroencéphalogramme confirmeront que l'enfant a des accès de frissonnement, un phénomène bénin qui ne requiert pas d'examen plus approfondi ou de traitement médical. La cause de cet état est inconnue, mais il se distingue de l'épilepsie et ne nécessite pas de médicaments antiépileptiques, auxquels il ne répond pas. Les parents peuvent avoir l'assurance que les accès diminueront en fréquence et disparaîtront spontanément avec l'âge.

Continuous positive airway pressure for obstructive sleep apnea in children.

QUESTION: A 12-year-old child underwent adenotonsillectomy for treatment of obstructive sleep apnea (OSA) but continues to snore at night and struggles with attentiveness at school. The child's parent uses a continuous positive airway pressure (CPAP) machine at night and wonders whether the same therapy could be used in children. ANSWER: Unlike in adults, pediatric OSA is commonly related to adenotonsillar hypertrophy and is often amenable to treatment with adenotonsillectomy. As an alternative to surgery or in cases of postsurgical persistence of OSA, CPAP has shown effectiveness in improving both polysomnographic parameters and daytime neurobehavioural symptoms in children with OSA. Adherence to CPAP therapy is a challenge in children and requires parental education and special considerations such as a mask acclimatization period.

Controlling type 1 error rate for sequential, bioequivalence studies with crossover designs.

Sample size reestimation in a crossover, bioequivalence study can be a useful adaptive design tool, particularly when the intrasubject variability of the drug formulation under investigation is not well understood. When sample size reestimation is done based on an interim estimate of the intrasubject variability and bioequivalence is tested using the pooled estimate of intrasubject variability, type 1 error inflation will occur. Type 1 error inflation is caused by the pooled estimate being a biased estimator of the intrasubject variability. The type 1 error inflation and bias of the pooled estimator of variability are well characterized in the setting of a two-arm, parallel study. The purpose of this work is to extend this characterization to the setting of a crossover, bioequivalence study with sample size reestimation and to propose an estimator of the intrasubject variability that will prevent type 1 error inflation.

Dose finding with the sequential parallel comparison design.

The sequential parallel comparison design (SPCD) is a two-stage design recommended for trials with possibly high placebo response. A drug-placebo comparison in the first stage is followed in the second stage by placebo nonresponders being re-randomized between drug and placebo. We describe how SPCD can be used in trials where multiple doses of a drug or multiple treatments are compared with placebo and present two adaptive approaches. We detail how to analyze data in such trials and give recommendations about the allocation proportion to placebo in the two stages of SPCD.