Mediating processes underlying the associations between maternal obesity and the likelihood of cesarean birth.

BACKGROUND: Pregnant women with obesity are more likely to experience cesarean birth compared to women without obesity. Yet, little is known about the underlying mechanisms. The objective of this study was therefore to evaluate how mediators contribute to the association between obesity and prelabor/intrapartum cesarean birth. METHODS: We retrospectively analyzed Swiss cohort data from 394,812 singleton, cephalic deliveries between 2005 and 2020. Obesity (BMI ≥ 30 kg/m2 ) was defined as the exposure and prelabor or intrapartum cesarean birth as the outcomes. Hypothesized mediators included gestational comorbidities, large-for-gestational-age infant, pregnancy duration >410/7 weeks, slower labor progress, labor induction, and history of cesarean birth. We performed path analyses using generalized structural equation modeling and assessed mediation by a counterfactual approach. RESULTS: Women with obesity had a cesarean birth rate of 39.36% vs. 24.12% in women without obesity. The path models mainly showed positive direct and indirect associations between obesity and cesarean birth. In the total sample, the mediation models explained up to 39.47% (95% CI 36.92-42.02) of the association between obesity and cesarean birth, and up to 57.13% (95% CI 54.10-60.16) when including history of cesarean birth as mediator in multiparous women. Slower labor progress and history of cesarean birth were found to be the most clinically significant mediators. CONCLUSIONS: This study provides empirical insights into how obesity may increase cesarean birth rates through mediating processes. Particularly allowing for a slower labor progress in women with obesity might reduce cesarean birth rates and prevent subsequent repeat cesarean births in multiparous women.

Bereaved parents' perspectives on their child's end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study.

BACKGROUND: Paediatric Palliative Care (PPC) focuses on ensuring the best possible quality of life for the child and his/her family by extending beyond the physical domain into psychosocial and spiritual wellbeing. A deep understanding of what is important to parents is crucial in guiding the further evaluation and improvement of PPC and end-of-life (EOL) care services. Much can be learned from specific positive and negative experiences of bereaved parents with the EOL care of their child. This report builds upon a questionnaire survey as part of the national Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study. METHODS: One part of the PELICAN study was set up to assess and explore the parental perspectives on their child's EOL care. Interview data were used to explain the extremely positive and negative results of a quantitative survey in an explanatory sequential mixed-methods approach. Data integration occurred at different points: during sampling of the interview participants, when designing the interview guide and during analysis. A narrative approach was applied to combine the qualitative results reported here with the already published quantitative survey results. RESULTS: Eighteen mothers (60%) and twelve fathers (40%) participated in 20 family interviews. All parents reported having both positive and negative experiences during their child's illness and EOL, which was characterised by many ups and downs. The families transitioned through phases with a prospect of a cure for some children as well as setbacks and changing health status of the child which influenced prognosis, leading to the challenge of making extremely difficult decisions. Severely negative experiences still haunted and bothered the parents at the time when the interview took place. CONCLUSIONS: A deep understanding of the perspectives and needs of parents going through the devastating event of losing a child is important and a prerequisite to providing compassionate care. This complex care needs to recognise and respond to the suffering not only of the child but of the parents and the whole family. Communication and shared decision-making remain pivotal, as do still improvable elements of care that should build on trustful relationships between families and healthcare professionals.

Informal coercion during childbirth: risk factors and prevalence estimates from a nationwide survey of women in Switzerland.

BACKGROUND: In many countries, the increase in facility births is accompanied by a high rate of obstetric interventions. Lower birthrates or elevated risk factors such as women's higher age at childbirth and an increased need for control and security cannot entirely explain this rise in obstetric interventions. Another possible factor is that women are coerced to agree to interventions, but the prevalence of coercive interventions in Switzerland is unknown. METHODS: In a nationwide cross-sectional online survey, we assessed the prevalence of informal coercion during childbirth, women's satisfaction with childbirth, and the prevalence of women at risk of postpartum depression. Women aged 18 years or older who had given birth in Switzerland within the previous 12 months were recruited online through Facebook ads or through various offline channels. We used multivariable logistic regression to estimate the risk ratios associated with multiple individual and contextual factors. RESULTS: In total, 6054 women completed the questionnaire (a dropout rate of 16.2%). An estimated 26.7% of women experienced some form of informal coercion during childbirth. As compared to vaginal delivery, cesarean section (CS) and instrumental vaginal birth were associated with an increased risk of informal coercion (planned CS risk ratio [RR]: 1.52, 95% confidence interval [1.18,1.96]; unplanned CS RR: 1.92 [1.61,2.28]; emergency CS RR: 2.10 [1.71,2.58]; instrumental vaginal birth RR: 2.17 [1.85,2.55]). Additionally, migrant women (RR: 1.45 [1.26,1.66]) and women for whom a self-determined vaginal birth was more important (RR: 1.15 [1.06,1.24]) more often reported informal coercion. Emergency cesarean section (RR: 1.32 [1.08,1.62]), being transferred to hospital (RR: 1.33 [1.11,1.60]), and experiencing informal coercion (RR: 1.35 [1.19,1.54]) were all associated with a higher risk of postpartum depression. Finally, women who had a non-instrumental vaginal birth reported higher satisfaction with childbirth while women who experienced informal coercion reported lower satisfaction. CONCLUSIONS: One in four women experience informal coercion during childbirth, and this experience is associated with a higher risk of postpartum depression and lower satisfaction with childbirth. To prevent traumatic after-effects, health care professionals should make every effort to prevent informal coercion and to ensure sensitive aftercare for all new mothers.

Effects of the Covid-19 pandemic on maternity staff in 2020 - a scoping review.

In the spring of 2020, the SARS-CoV-2 virus caused the Covid-19 pandemic, bringing with it drastic changes and challenges for health systems and medical staff. Among the affected were obstetricians and midwives, whose close physical contact with pregnant women, women who recently gave birth, and their children was indispensable. In the obstetric setting, births cannot be postponed, and maternity staff had to adapt to assure obstetric safety while balancing evidence-based standards with the new challenges posed by the pandemic. This scoping review gives a comprehensive overview of the effecs the Covid-19 pandemic had on maternity staff. We followed the evidence-based approach described by Arksey & O'Malley: we searched several databases for English and German articles published between January 2020 and January 2021 that discussed or touched upon the effects the pandemic had on maternity staff in OECD countries and China. We found that structural challenges caused by the crisis and its subjective effects on maternity staff fell into two main topic areas. Structural challenges (the first main topic) were divided into five subtopics: staff shortages and restructuring; personal protective equipment and tests; switching to virtual communication; handling women with a positive SARS-CoV-2 infection; and excluding accompanying persons. The pandemic also strongly affected the staff's mental health (the second main topic.) Attempting to meet challenges posed by the pandemic while afraid of contamination, suffering overwork and exhaustion, and struggling to resolve ethical-moral dilemmas had severe negative subjective effects. Several studies indicated increased depression, anxiety, stress levels, and risk of post-traumatic stress symptoms, although the crisis also generated strong occupational solidarity. Care for pregnant, birthing, and breast-feeding women cannot be interrupted, even during a pandemic crisis that requires social distancing. Maternity staff sometimes had to abandon normal standards of obstetric care and were confronted with enormous challenges and structural adjustments that did not leave them unscathed: their mental health suffered considerably. Researchers should study maternity staff's experiences during the pandemic to prepare recommendations that will protect staff during future epidemics.

Comparison of End-of-Life Care Practices Between Children With Complex Chronic Conditions and Neonates Dying in an ICU Versus Non-ICUs: A Substudy of the Pediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) Project.

OBJECTIVES: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU. DESIGN: Substudy of a nation-wide retrospective chart review. SETTING: Thirteen hospitals, including 14 pediatric and neonatal ICUs, two long-term institutions, and 10 community-based organizations in the three language regions of Switzerland. PATIENTS: One hundred forty-nine children (0-18 yr) who died in the years 2011 or 2012. Causes of death were related to cardiac, neurologic, oncological, or neonatal conditions. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Demographic and clinical characteristics, therapeutic procedures, circumstances of death, and patterns of decisional processes were extracted from the medical charts. Ninety-three (62%) neonates (median age, 4 d) and children (median age, 23 mo) died in ICU, and 56 (38%) with a median age of 63 months outside ICU. Generally, ICU patients had more therapeutic and invasive procedures, compared with non-ICU patients. Changes in treatment plan in the last 4 weeks of life, such as do-not-resuscitate orders occurred in 40% of ICU patients and 25% of non-ICU patients (p < 0.001). In the ICU, when decision to withdraw life-sustaining treatment was made, time to death in children and newborns was 4:25 and 3:00, respectively. In institutions where it was available, involvement of specialized pediatric palliative care services was recorded in 15 ICU patients (43%) and in 18 non-ICU patients (78%) (p = 0.008). CONCLUSIONS: This nation-wide study demonstrated that patients with a complex chronic condition who die in ICU, compared with those who die outside ICU, are characterized by fast changing care situations, including when to withdraw life-sustaining treatment. This highlights the importance of early effective communication and shared decision making among clinicians and families.

Perinatal mental health care from the user and provider perspective: protocol for a qualitative study in Switzerland.

BACKGROUND: Mental disorders in the perinatal period (PMD) can severely harm women and their children if not detected early and treated appropriately. Even though mental health care is covered by health insurance and is used widely by women in the perinatal period in Switzerland, it is not known if the care provided is meeting the needs of the patients and is efficient in the view of health care professionals. The aim of this study is to identify strengths, gaps and requirements for adequate mental health care in the perinatal period from the perspectives of patients and care providers for a wide range of relevant mental disorders. METHODS: In the qualitative study we conduct (1) semi-structured single interviews with former PMD patients to obtain narratives about their experiences and needs for health care for their condition. Women are included who have been treated for PMD but are mentally stable at the time of the interview (n = 24). We will stratify the sample by 4 clusters of relevant ICD-10 F-diagnoses, covering the most frequent and the most severe mental disorders. We will further stratify the sample based on whether the women already had experience with psychiatric or psychological health care or not before their last episode of PMD. We will also conduct (2) three interprofessional focus groups with health and social care professionals involved in perinatal care, and a health insurance representative. The focus groups will consist of 5-8 professionals. Data collection and thematic analysis will consider Levesque's et al. (2013) conceptual model on access to health care. DISCUSSION: The study will provide fundamental data on the experiences and perspectives about perinatal mental health care from user and provider perspectives. The study will generate the evidence base needed to develop models of integrated, coordinated, patient- and family-centred care that is accessed by women with various types of PMD. TRIAL REGISTRATION: The study was registered on ClinicalTrials.gov in November 2019 under the identifier NCT04185896.

Differing needs of mothers and fathers during their child's end-of-life care: secondary analysis of the "Paediatric end-of-life care needs" (PELICAN) study.

BACKGROUND: Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Caregiving needs have been studied predominantly in mothers. Differences in caregiving needs between mothers and fathers during their child's end of life have not, however, been explored so far. This knowledge is of importance to best meet individual parental needs in paediatric end-of-life care. METHODS: Secondary analysis of a quantitative survey on parental needs during their child's last 4 weeks of life, collected in the Swiss multicentre "Paediatric End-of-Life Care Needs" (PELICAN) study. Caregiving needs of mothers and fathers (parental dyad) who had lost a child due to a cardiological, neurological or oncological disease or during the neonatal period in the years 2011-2012 were retrospectively assessed using a questionnaire representing six evidence-based quality domains of paediatric palliative and end-of-life care. RESULTS: Seventy-eight parental dyads were included in this analysis. Differences between mothers and fathers were mostly found around needs to be supported as a family. In all, 28 out of 34 needs-related questionnaire items were scored higher by mothers than by fathers, indicating higher importance for that need to be met. The results indicate that these differences might relate to different caregiving roles and gender-specific coping strategies. CONCLUSIONS: To best meet parental needs in paediatric end-of-life care, particular attention should be paid to both mothers and fathers and their specific caregiving roles, as differences in these roles might influence their needs in this exceptional situation. Therefore, healthcare professionals should identify how parental dyads mutually navigate care for their sick child to best meet their needs in support. Additionally, mothers and fathers should be supported in their individual coping strategies.

Comparative Evaluation of Parental Stress Experiences Up to 2 to 3 Years After Preterm and Term Birth.

BACKGROUND: Parenting stress after preterm birth (PTB) has negative long-term effects on parenting. Research about parental experiences after PTB and on parenting stress in early childhood has focused on mothers. PURPOSE: To compare parenting stress between mothers and fathers 2 to 3 years after PTB and full-term birth (FTB) and to explore their memories about their stress experience, especially after PTB. METHODS: Fifty-four mothers and fathers in Switzerland whose children were PTB and 65 parents of FTB completed the Parenting Stress Index 2 to 3 years after birth. We compared scores between PTB and FTB and between mothers and fathers. A random subset of parents took part in semistructured interviews that began with photo-elicitation. We analyzed the data thematically. We cross-validated and corroborated qualitative and quantitative findings about parenting stress 2 to 3 years after birth. RESULTS: Preterm birth is stressful for parents who cannot take a child's health for granted, but stress experiences after FTB and PTB equalize within 2 to 3 years. Mothers were the primary caregivers and suffered more stress than fathers. For parents with PTB, positive communications from healthcare workers strengthened parental coping in neonatal intensive care unit and after discharge, but parents perceived discharges as early and inconsistent. IMPLICATIONS FOR PRACTICE AND RESEARCH: Interventions and new models of care improving communication with healthcare professionals, involving parents in infant care as early as possible, increasing staff support to help parents cope better, and optimizing the management of discharge need to be implemented into practice. Their impact on parenting stress on the long term needs to be investigated.

The influence of gestational age in the psychometric testing of the Bernese Pain Scale for Neonates.

BACKGROUND: Assessing pain in neonates is challenging because full-term and preterm neonates of different gestational ages (GAs) have widely varied reactions to pain. We validated the Bernese Pain Scale for Neonates (BPSN) by testing its use among a large sample of neonates that represented all GAs. METHODS: In this prospective multisite validation study, we assessed 154 neonates between 24 2/7 and 41 4/7 weeks GA, based on the results of 1-5 capillary heel sticks in their first 14 days of life. From each heel stick, we produced three video sequences: baseline; heel stick; and, recovery. Five blinded nurses rated neonates' pain responses according to the BPSN. The underlying factor structure of the BPSN, interrater reliability, concurrent validity with the Premature Infant Pain Profile-Revised (PIPP-R), construct validity, sensitivity and specificity, and the relationship between behavioural and physiological indicators were explored. We considered GA and gender as individual contextual factors. RESULTS: The factor analyses resulted in a model where the following behaviours best fit the data: crying; facial expression; and, posture. Pain scores for these behavioural items increased on average more than 1 point during the heel stick phases compared to the baseline and recovery phases (p < 0.001). Among physiological items, heart rate was more sensitive to pain than oxygen saturation. Heart rate averaged 0.646 points higher during the heel stick than the recovery phases (p < 0.001). GA increased along with pain scores: for every additional week of gestation, the average increase of behavioural pain score was 0.063 points (SE = 0.01, t = 5.49); average heart rate increased 0.042 points (SE = 0.01, t = 6.15). Sensitivity and specificity analyses indicated that the cut-off should increase with GA. Modified BPSN showed good concurrent validity with the PIPP-R (r = 0.600-0.758, p < 0.001). Correlations between the modified behavioural subscale and the item heart rate were low (r = 0.102-0.379). CONCLUSIONS: The modified BPSN that includes facial expression, crying, posture, and heart rate is a reliable and valid tool for assessing acute pain in full-term and preterm neonates, but our results suggest that adding different cut-off points for different GA-groups will improve the BPSN's clinical usefulness. TRIAL REGISTRATION: The study was retrospectively registered in the database of Clinical Trial gov. Study ID-number: NCT 02749461 . Registration date: 12 April 2016.

Communication barriers in maternity care of allophone migrants: Experiences of women, healthcare professionals, and intercultural interpreters.

AIM: To describe communication barriers faced by allophone migrant women in maternity care provision from the perspectives of migrant women, healthcare professionals, and intercultural interpreters. BACKGROUND: Perinatal health inequality of migrant women hinges on barriers to services, with a major barrier being language. Their care is often also perceived as demanding due to conflicting values or complex situations. Potentially divergent perceptions of users and providers may hinder efficient communication. DESIGN: Qualitative explorative study. METHODS: A convenience sample of 36 participants was recruited in the German speaking region of Switzerland. The sample consisted of four Albanian and six Tigrinya speaking women, 22 healthcare professionals and four intercultural interpreters (March-June 2016) who participated in three focus group discussions and seven semi-structured interviews. Audio recordings of the discussions and interviews were transcribed and thematically analysed. RESULTS: The analysis revealed three main themes: the challenge of understanding each other's world, communication breakdowns and imposed health services. Without interpretation communication was reduced to a bare minimum and thus insufficient to adequately inform women about treatment and address their expectations and needs. CONCLUSION: A primary step in dismantling barriers is guaranteed intercultural interpreting services. Additionally, healthcare professionals need to continuously develop and reflect on their transcultural communication. Institutions must enable professionals to respond flexibly to allophone women's needs and to offer care options that are safe and in accordance to their cultural values. IMPACT: Our results give the foundation of tenable care of allophonic women and emphasize the importance of linguistic understanding in care quality.

Exploring moral problems and moral competences in midwifery: A qualitative study.

BACKGROUND: Most undergraduate midwifery curricula comprise ethics courses to strengthen the moral competences of future midwives. By contrast, surprisingly little is known about the specific moral competences considered to be relevant for midwifery practice. Describing these competences not only depends on generic assumptions about the moral nature of midwifery practice but also reflects which issues practitioners themselves classify as moral. OBJECTIVE: The goal of this study was to gain insight into the ethical issues midwives encounter in their daily work, the key competences and resources they consider indispensable to understand and deal with them, and to assess phenomena linked to moral distress. METHODS: We conducted individual semi-structured interviews with eight midwives and two other health professionals, varying in terms of years of experience and work setting. Interview transcripts were analyzed in an interdisciplinary research group, following thematic analysis. ETHICAL CONSIDERATIONS: This study was not subject to approval according to the Swiss Law on Research with Humans. Participants were informed about the study goals and gave written informed consent prior to participation. RESULTS: External constraints limiting the midwife's and the patient's autonomy and resulting interpersonal conflicts were found to be the most relevant ethical issues encountered in clinical practice and were most often associated with moral distress. These conflicts often arise in the context of medical interventions midwives consider as not appropriate and situations in which less experienced midwives in particular observe a lack of both interprofessional communication and trust in their professional competence. Ethical issues related to late abortions or prenatal diagnostics and selective abortions were also frequently addressed, but many midwives involved had learned to cope with them. DISCUSSION: In the light of the ethical issues and factors contributing to phenomena of moral distress, an empirically grounded profile of moral competences is drafted. Curricular implications in the light of possible adaptations within undergraduate midwifery education are critically discussed.

Patterns of paediatric end-of-life care: a chart review across different care settings in Switzerland.

BACKGROUND: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland. METHODS: In this nationwide retrospective chart review study, data from paediatric patients who died in the years 2011 or 2012 due to a cardiac, neurological or oncological condition, or during the neonatal period were collected in 13 hospitals, two long-term institutions and 10 community-based healthcare service providers throughout Switzerland. RESULTS: Ninety-three (62%) of the 149 reviewed patients died in intensive care units, 78 (84%) of them following withdrawal of life-sustaining treatment. Reliance on invasive medical interventions was prevalent, and the use of medication was high, with a median count of 12 different drugs during the last week of life. Patients experienced an average number of 6.42 symptoms. The prevalence of various types of symptoms differed significantly among the four diagnostic groups. Overall, our study patients stayed in the hospital for a median of six days during their last four weeks of life. Seventy-two patients (48%) stayed at home for at least one day and only half of those received community-based healthcare. CONCLUSIONS: The study provides a wide-ranging overview of current end-of-life care practices in a real-life setting of different healthcare providers. The inclusion of patients with all major diagnoses leading to disease- and prematurity-related childhood deaths, as well as comparisons across the diagnostic groups, provides additional insight and understanding for healthcare professionals. The provision of specialised palliative and end-of-life care services in Switzerland, including the capacity of community healthcare services, need to be expanded to meet the specific needs of seriously ill children and their families.

Sexual and reproductive healthcare for women asylum seekers in Switzerland: a multi-method evaluation.

BACKGROUND: Forced migration significantly endangers health. Women face numerous health risks, including sexual violence, lack of contraception, sexually transmitted disease, and adverse perinatal outcomes. Therefore, sexual and reproductive healthcare is a significant aspect of women asylum seekers' health. Even when healthcare costs of asylum seekers are covered by the government, there may be strong barriers to healthcare access and specific needs may be addressed inadequately. The study's objectives were a) to assess the accommodation and healthcare services provided to women asylum seekers in standard and specialised health care, b) to assess the organisation of healthcare provision and how it addresses the sexual and reproductive healthcare needs of women asylum seekers. METHODS: The study utilised a multi-method approach, comprising a less-dominant quantitative component and dominant qualitative component. The quantitative component assessed accommodation conditions for women in eight asylum centres using a survey. The qualitative component assessed healthcare provision on-site, using semi-structured interviews with health and social care professionals (n = 9). Asylum centres were selected to cover a wide range of characteristics. Interview analysis was guided by thematic analysis. RESULTS: The accommodation in the asylum centres provided gender-separate rooms and sanitary infrastructure. Two models of healthcare were identified, which differed in the services they provided and in their organisation: 1) a standard healthcare model characterised by a lack of coordination between healthcare providers, unavailability of essential services such as interpreters, and fragmented healthcare, and 2) a specialised healthcare model specifically tailored to the needs of asylum-seekers. Its organisation is characterised by a network of closely collaborating health professionals. It provided essential services not present in the standard model. We recommend the specialised healthcare model as a guideline for best practise. CONCLUSIONS: The standard, non-specialised healthcare model used in some regions in Switzerland does not fully meet the healthcare needs of women asylum seekers. Specialised healthcare services used in other regions, which include translation services as well as gender and culturally sensitive care, are better suited to address these needs. More widespread use of this model would contribute significantly toward protecting the sexual and reproductive integrity and health of women asylum seekers.

Barrier-free communication in maternity care of allophone migrants: BRIDGE study protocol.

AIM: To describe communication and access barriers encountered by allophone women of different migration backgrounds in the Swiss maternity care services, from the perspective of users, healthcare professionals and intercultural interpreters. BACKGROUND: In addition to the challenges of maternal adjustment, pregnant migrant women must also deal with an unfamiliar health service system. Some must overcome language barriers and the stress of uncertain residence status. Limited access to maternity care increases perinatal morbidity and mortality. Almost 10% of foreigners speak none of Switzerland's official languages. Factors that facilitate or hinder communication between migrant women and perinatal healthcare professionals are under-studied and must be understood if we are to overcome those barriers in clinical practice. DESIGN: Qualitative exploratory study with quantitative sub-study. METHODS: Participants will be drawn from German to speaking regions of Switzerland. We will conduct focus group discussions and semi-structured interviews with users in their own language (Albanian and Tigrinya) and with healthcare professionals and intercultural interpreters (March-June 2016), then perform Thematic Analysis on the data. In the sub-study, midwives will report their experience of using a telephone interpreting service during postnatal home visits in a questionnaire (October 2013-March 2016). Data will be analysed with descriptive statistics. DISCUSSION: Our study will reveal patterns in communications between allophone migrant women and healthcare providers and communication barriers. By incorporating multiple perspectives, we will describe the challenges all parties face. Our results will inform those who draft recommendations to improve provision of maternity care to allophone women and their families. TRIAL REGISTRATION: ClinicalTrials.gov ID: BernUAS NCT02695316.

Individual contextual factors in the validation of the Bernese pain scale for neonates: protocol for a prospective observational study.

BACKGROUND: The Bernese Pain Scale for Neonates (BPSN) is a multidimensional pain assessment tool that is already widely used in clinical settings in the German speaking areas of Europe. Recent findings indicate that pain responses in preterm neonates are influenced by individual contextual factors, such as gestational age (GA), gender and the number of painful procedures experienced. Currently, the BPSN does not consider individual contextual factors. Therefore, the aim of this study is the validation of the BPSN using a large sample of neonates with different GAs. Furthermore, the influence of individual contextual factors on the variability in pain reactions across GA groups will be explored. The results will be used for a modification of the BPSN to account for individual contextual factors in future clinical pain assessment in neonates. METHODS AND DESIGN: This prospective multisite validation study with a repeated measures design will take place in three university hospital neonatal intensive care units (NICUs) in Switzerland (Bern, Basel and Zurich). To examine the impact of GA on pain responses and their variability, the infants will be stratified into six GA groups ranging from 24 0/7 to 42 0/7. Among preterm infants, 2-5 routine capillary heel sticks within the first 14 days of life, and among full-term infants, two heel sticks during the first days of life will be documented. For each heel stick, measurements will be video recorded for each of three phases: baseline, heel stick, and recovery. The infants' pain responses will be rated according to the BPSN by five nurses who are blinded as to the number of each heel stick and as to the measurement phases. Individual contextual factors of interest will be extracted from patient charts. DISCUSSION: Understanding and considering the influence of individual contextual factors on pain responses in a revised version of the BPSN will help the clinical staff to more appropriately assess pain in neonates, particularly preterm neonates hospitalized in NICUs. Pain assessment is a first step toward appropriate and efficient pain management, which itself is an important factor in later motor and cognitive development in this vulnerable patient population. TRIAL REGISTRATION: The study is registered in the database of Clinical Trial gov. Study ID-number: NCT 02749461 . Registration date: 12 April 2016.

Maintaining family life balance while facing a child's imminent death-A mixed methods study.

AIM: To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. BACKGROUND: A child's end-of-life phase is an extremely difficult time for the whole family. Parents have specific needs, especially when they care for a dying child at home. DESIGN: Concurrent embedded mixed methods design. METHODS: This sub-study of the nationwide survey, 'Paediatric End-of-Life Care Needs in Switzerland' (2012-2015) included 47 children who received EOL care at home from 2011-2012. We extracted quantitative data from patients' medical charts and obtained information via parental questionnaire and then compared parents whose child died at home or in hospital by computing generalized estimation equations. We thematically analysed interviews with parents who provided EOL care at home. RESULTS: Parents created an intimate lifeworld and a sense of normality for the child at home. They constantly balanced the family's lifeworld with the requirements and challenges posed by the outside world. This work exhausted parents. Parental 'readiness' and social support drove EOL care for children at home. Parents needed practical help with housekeeping and had negative experiences when dealing with insurance. In only 34.8% of cases was a child's EOL home care supported by paediatric palliative care team. CONCLUSION: Paediatric end-of-life care at home is only feasible if parents make extraordinary efforts. If family-centred end-of-life home care is provided by a hospital-based paediatric palliative home care team, which includes paid housekeeping help and psychological support, parents' needs could be better met.

When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care.

BACKGROUND: Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services. METHODS: Questionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure. RESULTS: Of 307 eligible families, 267 could be contacted and 135 (51%) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child's EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences. CONCLUSIONS: Although positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.

Paediatric end-of-life care in the home care setting (PELICAN HOME)--a mixed methods study protocol.

AIMS: (a) To explore parental experiences and needs during their child's end-of-life care at home; (b) to explore patient's characteristics and current provision of paediatric end-of-life care in the home care setting in Switzerland; and (c) to determine influencing system factors impacting end-of-life care at home. BACKGROUND: Parental experiences/needs and paediatric end-of-life care services in the home care setting are influenced by national healthcare policy, determinants of the family and the individual patient. In Switzerland, there is a lack of information about the provision of paediatric end-of-life care at home and related parent's experiences/needs. DESIGN: Sub-study of the nationwide multicenter study 'Paediatric End-of-Life CAre Needs in Switzerland' using a concurrent qualitative embedded mixed methods design. METHODS: Data will be collected from January-May 2014 through community care organizations and children's hospitals. The study includes approximately 40-50 families whose child (0-18 years) died in the years 2011-2012 due to a cardiological, neurological or oncological condition and spent at least 21 days at home during the last 4 weeks of life. Qualitative data will be collected through semi-structured interviews with parents and analysed by 'thematic analysis'. Quantitative data about patient's characteristics will be obtained from patient's medical charts and parental experiences/needs through the parental questionnaire. Appropriate descriptive and inference statistical methods will be used for data analysis. DISCUSSION: This study will provide comprehensive basic information about parental needs and patient characteristics for the provision of paediatric end-of-life care and may promote the development of family-centred paediatric end-of-life care services at home. STUDY REGISTRATION: The PELICAN-study is registered in the database of Clinical Trial gov. Study ID-number: NCT 01983852.

Paediatric end-of-life care needs in Switzerland: current practices, and perspectives from parents and professionals. A study protocol.

AIM: To present a protocol for a multi-phase study about the current practice of end-of-life care in paediatric settings in Switzerland. BACKGROUND: In Switzerland, paediatric palliative care is usually provided by teams, who may not necessarily have specific training. There is a lack of systematic data about specific aspects of care at the end of a child's life, such as symptom management, involvement of parents in decision-making and family-centred care and experiences and needs of parents, and perspectives of healthcare professionals. DESIGN: This retrospective nationwide multicentre study, Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN), combines quantitative and qualitative methods of enquiry. METHODS: The PELICAN study consists of three observational parts, PELICAN I describes practices of end-of-life care (defined as the last 4 weeks of life) in the hospital and home care setting of children (0-18 years) who died in the years 2011-2012 due to a cardiac, neurological or oncological disease, or who died in the neonatal period. PELICAN II assesses the experiences and needs of parents during the end-of-life phase of their child. PELICAN III focuses on healthcare professionals and explores their perspectives concerning the provision of end-of-life care. CONCLUSION: This first study across Switzerland will provide comprehensive insight into the current end-of-life care in children with distinct diagnoses and the perspectives of affected parents and health professionals. The results may facilitate the development and implementation of programmes for end-of-life care in children across Switzerland, building on real experiences and needs. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01983852.