Parents' descriptions of labouring with an antepartum fetal death: Findings from the Birthing in Grief study.

BACKGROUND: Evidence to guide intrapartum care when an unborn baby has died is limited. AIMS: To explore parents' experiences of care during labour of an antepartum stillbirth. MATERIALS AND METHODS: Semi-structured interviews with 18 bereaved parents from across Australia. Content analysis was conducted. FINDINGS: Two broad themes were identified: 'explaining every step' and 'helping us feel like parents.' Sub-themes under the first broad theme, 'explaining every step', were 'how and when information was given' and 'what happens next.' 'Like any other parent', 'feeling the pain' and 'everything is clouded' were sub-themes of the second broad theme. These findings mapped to current Australian clinical practice guidelines for bereavement care around stillbirth and neonatal death, ie good communication, recognition of parenthood, shared decision making and effective support. CONCLUSIONS: This study on parents' experiences of labour with a fetal death in utero brings an important perspective to intrapartum care for this group. As far as we are aware, this study is the first to focus solely on this aspect of care. Our findings could be readily mapped to the four perinatal bereavement care goals. Parents wanted care providers to facilitate their choices, their sense of control, their autonomy and their agency. They wanted to feel that they had received the 'best' care available.

Is care of stillborn babies and their parents respectful? Results from an international online survey.

OBJECTIVE: To quantify parents' experiences of respectful care around stillbirth globally. DESIGN: Multi-country, online, cross-sectional survey. SETTING AND POPULATION: Self-identified bereaved parents (n = 3769) of stillborn babies from 44 high- and middle-income countries. METHODS: Parents' perspectives of seven aspects of care quality, factors associated with respectful care and seven bereavement care practices were compared across geographical regions using descriptive statistics. Respectful care was compared between country-income groups using multivariable logistic regression. MAIN OUTCOME MEASURES: Self-reported experience of care around the time of stillbirth. RESULTS: A quarter (25.4%) of 3769 respondents reported disrespectful care after stillbirth and 23.5% reported disrespectful care of their baby. Gestation less than 30 weeks and primiparity were associated with disrespect. Reported respectful care was lower in middle-income countries than in high-income countries (adjusted odds ratio 0.35, 95% CI 0.29-0.42, p < 0.01). In many countries, aspects of care quality need improvement, such as ensuring families have enough time with providers. Participating respondents from Latin America and southern Europe reported lower satisfaction across all aspects of care quality compared with northern Europe. Unmet need for memory-making activities in middle-income countries was high. CONCLUSIONS: Many parents experience disrespectful care around stillbirth. Provider training and system-level support to address practical barriers are urgently needed. However, some practices (which are important to parents) can be readily implemented such as memory-making activities and referring to the baby by name. TWEETABLE ABSTRACT: One in four experience disrespectful care after stillbirth. Parents want more time with providers and their babies, to talk and memory-make.

Perinatal bereavement care during COVID-19 in Australian maternity settings.

OBJECTIVES: Perinatal bereavement care is a complex area of practice. The COVID-19 pandemic led to reconfiguration of maternity and perinatal bereavement care services. This study explores Australian health care providers' perspectives of the impact of COVID-19 on the provision of respectful and supportive care following stillbirth or neonatal death. METHODS: Members of a perinatal bereavement care network were consulted at the commencement of the pandemic in Australia using an online feedback form. Respondents provided ratings and free-text comments on the impact of COVID-19 on implementation of 49 recommendations contained in the Perinatal Society of Australia and New Zealand/Stillbirth Centre of Research Clinical Practice Guideline for Respectful and Supportive Perinatal Bereavement Care. RESULTS: Responses were received from 35 health care providers who provided perinatal bereavement care in clinical settings or through support organisations in Australia. Major impacts of COVID-19 were reported for 8 of 49 guideline recommendations. Impacts included reduced: support for mothers due to visitor restrictions; availability of cultural and spiritual support and interpreters; involvement of support people in decision-making; options for memory-making and commemorative rituals; and staff training and supervision. Adaptations to minimise impacts included virtual consultations, online staff training, use of cold cots, and increased staff support for memory-making. CONCLUSIONS: Health care providers encounter substantial challenges as they strive to implement best practice perinatal bereavement care in pandemic conditions. Some practice adaptations developed during the COVID-19 pandemic could benefit parents; however, evaluation of their effectiveness and acceptability is needed.

Reflections on researching vulnerable populations: Lessons from a study with Bhutanese refugee women.

This paper explores the critical roles of researchers in research involving vulnerable populations. Its purpose is to reflect on the complex nature of vulnerability of Bhutanese refugee women who had resettled in Australia involved in research looking at the barriers to accessing preventive cancer screening. First, we describe the vulnerabilities considered prior to the research study and the actions taken to protect participants while the study was conducted. Second, we discuss those vulnerabilities that we did not anticipate, but were subsequently revealed during the study and consequently included in the study findings. These vulnerabilities should be considered for future research involving similar populations. It is important for researchers to use appropriate research designs that enable the voice of vulnerable people to be heard and to use research strategies that ensure findings are robust and participants are protected and empowered. Potential implications include the development of research practices that take account of the sources of vulnerabilities and consideration of how different vulnerabilities can evolve and affect findings and research recommendations.

Parents' experiences of care offered after stillbirth: An international online survey of high and middle-income countries.

BACKGROUND: Stillbirth, the death of a baby before birth, is associated with significant psychological and social consequences that can be mitigated by respectful and supportive bereavement care. The absence of high-level evidence to support the broad scope of perinatal bereavement practices means that offering a range of options identified as valued by parents has become an important indicator of care quality. This study aimed to describe bereavement care practices offered to parents across different high-income and middle-income countries. METHODS: An online survey of parents of stillborn babies was conducted between December 2014 and February 2015. Frequencies of nine practices were compared between high-income and middle-income countries. Differences in proportions of reported practices and their associated odds ratios were calculated to compare high-income and middle-income countries. RESULTS: Over three thousand parents (3041) with a self-reported stillbirth in the preceding five years from 40 countries responded. Fifteen countries had atleast 40 responses. Significant differences in the prevalence of offering nine bereavement care practices were reported by women in high-income countries (HICs) compared with women in middle-income countries (MICs). All nine practices were reported to occur significantly more frequently by women in HICs, including opportunity to see and hold their baby (OR = 4.8, 95% CI 4.0-5.9). The widespread occurrence of all nine practices was reported only for The Netherlands. CONCLUSIONS: Bereavement care after stillbirth varies between countries. Future research should look at why these differences occur, their impact on parents, and whether differences should be addressed, particularly how to support effective communication, decision-making, and follow-up care.

Best practice models recommended by Bhutanese refugee women for cervical and breast cancer screening in Australia: A qualitative study.

PURPOSE: The purpose of this paper was to explore what a refugee women's health screening program would look like if the views of Bhutanese refugee women were incorporated into service design and the approaches to targeting access to cervical and breast cancer screening. METHODS: Qualitative study, used in-depth interviews with 30 Bhutanese refugee women resettled in Melbourne, Australia. RESULTS: Two practice models were identified by refugee women: a doctor-initiated model involving opportunistic screening during consultations for other purposes; and a group screening model. Participants emphasised the need for a supportive environment with culturally appropriate services, community education and peer networks to encourage and facilitate their participation in cervical and breast cancer screening services. General practitioners can provide guidance, opportunistic screening that includes education, and advice about follow-up. The need for the routine use of professional interpreter services was reinforced. CONCLUSION: Available cervical and breast cancers screening services are not attuned to refugee women's views where this study focuses attention on the roles and practices of doctors in preventive health care for refugee women. Merging their perspectives with those of providers and policymaker's can fill the existing gaps and support to formulate the new interventions that will improve women's access to such preventative services. SO WHAT?: Refugee women resettled in high income countries are less likely to attend preventive cancer screening programs than other women, so we need to understand how to motivate them to seek regular check-ups. In this study Bhutanese refugee women resettled in Melbourne, Australia said that group screening or doctor-led care would be appealing to them.

Managing Women with Sexual Dysfunction: Difficulties Experienced by Malaysian Family Physicians.

Recognizing barriers to managing sexual issues makes it more likely that effective ways to overcome them will be found. In Malaysia, where discussion of sexual issues is taboo, sociocultural factors may influence how physicians manage patients with these types of problems. This article focuses on the challenges encountered by 21 Malay family physicians when women experiencing sexual problems and female sexual dysfunction (FSD) attended their clinics, an uncommon occurrence in Malaysia, despite their high prevalence. This qualitative study employed a phenomenological framework and conducted face-to-face in-depth interviews. Three main barriers to managing women with sexual problems were identified that can hinder assessment and treatment: insufficient knowledge and training; unfavorable clinic environments; and personal embarrassment. Some barriers were associated with physician characteristics but many were systemic. These were further evaluated using social cognitive theory. Professional attitudes appear important as those physicians with an interest in managing women's health seemed to make greater effort to explore issues further and work to gain trust. Physicians who appeared indifferent to the impact of FSD showed greater reluctance to find solutions. Systemic issues included unfavorable clinical settings, lack of training, and lack of local evidence. Any strategy to address FSD needs to be underpinned by appropriate policies and resources.

Meanings of Sexuality: Views from Malay Women with Sexual Dysfunction.

In Malaysia, female sexual dysfunction (FSD) among Malays is common, so understanding the meanings of sexuality becomes crucial, as they can vary with identity, and this may influence each woman's subsequent reaction to sexual experience. In this article, we explore the meanings of sexuality that Malay women had developed throughout their lived experience. This qualitative study, situated within a social cognitive theory and a phenomenological framework, was conducted through in-depth and photograph elicitation interviews with 26 Malay women who had self-reported experiencing FSD. The findings suggest that the meanings of sexuality for these women linked closely with fundamental factors of Malay identity, which is comprised of tradition (Adat), religion (Islam), and language, that all influence gendered roles. Malay women understood sexuality to be sexual intimacy within marriage, privileging their marital role as a "good wife" over their personal rights within a sexual relationship. This understanding of sexuality was reinforced by meanings attributed to procreation, which Malay women linked closely to the purpose of marriage and their role as a "good mother." The findings should provide useful evidence that could be used in sexual health promotions to help reduce FSD and in clinical practice to generate appropriate therapy in Malaysia and elsewhere.

Face-to-face interventions for informing or educating parents about early childhood vaccination.

BACKGROUND: Early childhood vaccination is an essential global public health practice that saves two to three million lives each year, but many children do not receive all the recommended vaccines. To achieve and maintain appropriate coverage rates, vaccination programmes rely on people having sufficient awareness and acceptance of vaccines.Face-to-face information or educational interventions are widely used to help parents understand why vaccines are important; explain where, how and when to access services; and address hesitancy and concerns about vaccine safety or efficacy. Such interventions are interactive, and can be adapted to target particular populations or identified barriers.This is an update of a review originally published in 2013. OBJECTIVES: To assess the effects of face-to-face interventions for informing or educating parents about early childhood vaccination on vaccination status and parental knowledge, attitudes and intention to vaccinate. SEARCH METHODS: We searched the CENTRAL, MEDLINE, Embase, five other databases, and two trial registries (July and August 2017). We screened reference lists of relevant articles, and contacted authors of included studies and experts in the field. We had no language or date restrictions. SELECTION CRITERIA: We included randomised controlled trials (RCTs) and cluster-RCTs evaluating the effects of face-to-face interventions delivered to parents or expectant parents to inform or educate them about early childhood vaccination, compared with control or with another face-to-face intervention. The World Health Organization recommends that children receive all early childhood vaccines, with the exception of human papillomavirus vaccine (HPV), which is delivered to adolescents. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures expected by Cochrane. Two authors independently reviewed all search results, extracted data and assessed the risk of bias of included studies. MAIN RESULTS: In this update, we found four new studies, for a total of ten studies. We included seven RCTs and three cluster-RCTs involving a total of 4527 participants, although we were unable to pool the data from one cluster-RCT. Three of the ten studies were conducted in low- or middle- income countries.All included studies compared face-to-face interventions with control. Most studies evaluated the effectiveness of a single intervention session delivered to individual parents. The interventions were an even mix of short (ten minutes or less) and longer sessions (15 minutes to several hours).Overall, elements of the study designs put them at moderate to high risk of bias. All studies but one were at low risk of bias for sequence generation (i.e. used a random number sequence). For allocation concealment (i.e. the person randomising participants was unaware of the study group to which participant would be allocated), three were at high risk and one was judged at unclear risk of bias. Due to the educational nature of the intervention, blinding of participants and personnel was not possible in any studies. The risk of bias due to blinding of outcome assessors was judged as low for four studies. Most studies were at unclear risk of bias for incomplete outcome data and selective reporting. Other potential sources of bias included failure to account for clustering in a cluster-RCT and significant unexplained baseline differences between groups. One cluster-RCT was at high risk for selective recruitment of participants.We judged the certainty of the evidence to be low for the outcomes of children's vaccination status, parents' attitudes or beliefs, intention to vaccinate, adverse effects (e.g. anxiety), and immunisation cost, and moderate for parents' knowledge or understanding. All studies had limitations in design. We downgraded the certainty of the evidence where we judged that studies had problems with randomisation or allocation concealment, or when outcomes were self-reported by participants who knew whether they'd received the intervention or not. We also downgraded the certainty for inconsistency (vaccination status), imprecision (intention to vaccinate and adverse effects), and indirectness (attitudes or beliefs, and cost).Low-certainty evidence from seven studies (3004 participants) suggested that face-to-face interventions to inform or educate parents may improve vaccination status (risk ratio (RR) 1.20, 95% confidence interval (CI) 1.04 to 1.37). Moderate-certainty evidence from four studies (657 participants) found that face-to-face interventions probably slightly improved parent knowledge (standardised mean difference (SMD) 0.19, 95% CI 0.00 to 0.38), and low-certainty evidence from two studies (179 participants) suggested they may slightly improve intention to vaccinate (SMD 0.55, 95% CI 0.24 to 0.85). Low-certainty evidence found the interventions may lead to little or no change in parent attitudes or beliefs about vaccination (SMD 0.03, 95% CI -0.20 to 0.27; three studies, 292 participants), or in parents' anxiety (mean difference (MD) -1.93, 95% CI -7.27 to 3.41; one study, 90 participants). Only one study (365 participants) measured the intervention cost of a case management strategy, reporting that the estimated additional cost per fully immunised child for the intervention was approximately eight times higher than usual care (low-certainty evidence). No included studies reported outcomes associated with parents' experience of the intervention (e.g. satisfaction). AUTHORS' CONCLUSIONS: There is low- to moderate-certainty evidence suggesting that face-to-face information or education may improve or slightly improve children's vaccination status, parents' knowledge, and parents' intention to vaccinate.Face-to-face interventions may be more effective in populations where lack of awareness or understanding of vaccination is identified as a barrier (e.g. where people are unaware of new or optional vaccines). The effect of the intervention in a population where concerns about vaccines or vaccine hesitancy is the primary barrier is less clear. Reliable and validated scales for measuring more complex outcomes, such as attitudes or beliefs, are necessary in order to improve comparisons of the effects across studies.

Understanding mothers' decision-making needs for autopsy consent after stillbirth: Framework analysis of a large survey.

BACKGROUND: Experiencing stillbirth is devastating and leaves parents searching for causes. Autopsy is the gold standard for investigation, but deciding to consent to this procedure is very difficult for parents. Decision support in the form of clear, consistent, and parent-centered information is likely to be helpful. The aims of this study were to understand the influences on parents' decisions about autopsy after stillbirth and to identify attributes of effective decision support that align with parents' needs. METHODS: Framework analysis using the Decision Drivers Model was used to analyze responses from 460 Australian and New Zealand (ANZ) mothers who took part in a multi-country online survey of parents' experiences of stillbirth. The main outcomes examined were factors influencing mothers' decisions to consent to autopsy after stillbirth. RESULTS: Free-text responses from 454 ANZ mothers referenced autopsy, yielding 1221 data segments for analysis. The data confirmed the difficult decision autopsy consent entails. Mothers had a strong need for answers coupled with a strong need to protect their baby. Four "decision drivers" were confirmed: preparedness for the decision; parental responsibility; possible consequences; and role of health professionals. Each had the capacity to influence decisions for or against autopsy. Also prominent were the "aftermath" of the decision: receiving the results; and decisional regret or uncertainty. CONCLUSIONS: The influences on decisions about autopsy are diverse and unpredictable. Effective decision support requires a consistent and structured approach that is built on understanding of parents' needs.

Stillbirths: recall to action in high-income countries.

Variation in stillbirth rates across high-income countries and large equity gaps within high-income countries persist. If all high-income countries achieved stillbirth rates equal to the best performing countries, 19,439 late gestation (28 weeks or more) stillbirths could have been avoided in 2015. The proportion of unexplained stillbirths is high and can be addressed through improvements in data collection, investigation, and classification, and with a better understanding of causal pathways. Substandard care contributes to 20-30% of all stillbirths and the contribution is even higher for late gestation intrapartum stillbirths. National perinatal mortality audit programmes need to be implemented in all high-income countries. The need to reduce stigma and fatalism related to stillbirth and to improve bereavement care are also clear, persisting priorities for action. In high-income countries, a woman living under adverse socioeconomic circumstances has twice the risk of having a stillborn child when compared to her more advantaged counterparts. Programmes at community and country level need to improve health in disadvantaged families to address these inequities.

Predictors of autopsy following stillbirth in Queensland, Australia: A population-based study.

BACKGROUND: Accurate determination of causes of stillbirth is critical to effective prevention. Autopsy remains the gold standard investigation for stillbirth; however, with low autopsy rates many stillbirths are likely to be 'unexplored' rather than 'unexplained'. AIM: To determine factors associated with autopsy following stillbirth. MATERIALS AND METHODS: Routinely collected population-based data on all singleton stillbirths of at least 400 g birthweight or 20 weeks gestation in Queensland between July 2000 and December 2011 were examined. Adjusted odds ratios (aOR, 99% CI) were calculated accounting for sociodemographic, pregnancy and medical factors. Of interest was initially unexplained stillbirth on the death certificate; analysis was stratified by gestational age group (<24, 24-27, 28-36 and ≥37 weeks). RESULTS: Of 3842 singleton stillbirths included in these analyses, 1356 (35.3%) had an autopsy performed. Initially unexplained stillbirth was associated with decreased odds of autopsy at late gestation (28-36 weeks, aOR 0.63 (99% CI 0.42-0.93); ≥37 weeks, aOR 0.53 (99% CI 0.35-0.81)) as was intrapartum stillbirth (<24 weeks, aOR 0.63 (99% CI 0.43-0.94); 28-36 weeks, aOR 0.37 (99% CI 0.14-0.98)). Congenital abnormality (<24 weeks, ≥37 weeks), small-for-gestational age (<24 weeks), and primigravidity (≥37 weeks) were associated with increased odds of autopsy following stillbirth. CONCLUSIONS: Pregnancy factors are associated with stillbirth autopsy. These findings have implications for development of appropriate information for parents and education of clinical staff. Further research is needed into factors influencing autopsy following stillbirth.

Insights into hospitalisation of advanced cancer patients: a study of medical records.

The aim of this study was to explore reasons for the hospitalisation and place of death outcomes of terminal cancer patients. The methodology involved a qualitative content analysis of medical records pertaining to the last 3 months of life of 39 patients with one of four malignancies: prostate, breast, lung, or haematological. The results presentation is organised around three themes: decision hierarchy in health care, meanings of 'home', and late recognition of dying. Based on the detailed findings, this paper suggests that important insights into the broader goals of advanced cancer patients are offered by allied health staff, and that more effective use of the multidisciplinary team may support endeavours to achieve more home deaths for cancer patients who want this outcome. The analysis also provides new insights into the meaning of 'home' in interactions between advanced cancer patients and health professionals. The wish for 'home' appears bound up with other patient goals and the implications of this are discussed.

Metastatic non-small cell lung cancer: a benchmark for quality end-of-life cancer care?

OBJECTIVES: To investigate the quality of end-of-life care for patients with metastatic non-small cell lung cancer (NSCLC). DESIGN AND PARTICIPANTS: Retrospective cohort study of patients from first hospitalisation for metastatic disease until death, using hospital, emergency department and death registration data from Victoria, Australia, between 1 July 2003 and 30 June 2010. MAIN OUTCOME MEASURES: Emergency department and hospital use; aggressiveness of care including intensive care and chemotherapy in last 30 days; palliative and supportive care provision; and place of death. RESULTS: Metastatic NSCLC patients underwent limited aggressive treatment such as intensive care (5%) and chemotherapy (< 1%) at the end of life; however, high numbers died in acute hospitals (42%) and 61% had a length of stay of greater than 14 days in the last month of life. Although 62% were referred to palliative care services, this occurred late in the illness. In a logistic regression model adjusted for year of metastasis, age, sex, metastatic site and survival, the odds ratio (OR) of dying in an acute hospital bed compared with death at home or in a hospice unit decreased with receipt of palliative care (OR, 0.25; 95% CI, 0.21-0.30) and multimodality supportive care (OR, 0.65; 95% CI, 0.56-0.75). CONCLUSION: Because early palliative care for patients with metastatic NSCLC is recommended, we propose that this group be considered a benchmark of quality end-of-life care. Future work is required to determine appropriate quality-of-care targets in this and other cancer patient cohorts, with particular focus on the timeliness of palliative care engagement.

Training and supportive programs for palliative care volunteers in community settings.

BACKGROUND: Palliative care is specialised health care to support people living with a terminal illness and their families. The involvement of volunteers can extend the range of activities offered by palliative care services, particularly for those living in the community. Activities undertaken by palliative care volunteers vary considerably but can be practical, social or emotional in nature. The types of training and support provided to these volunteers are likely to affect the volunteers' effectiveness in their role and influence the quality of care provided to palliative care clients and their families. Training and support can also have considerable resource implications for palliative care organisations, which makes it important to know how to provide this training and support as effectively as possible. OBJECTIVES: To assess the effects of training and support strategies for palliative care volunteers on palliative care clients and their families, volunteers and service quality. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library, 28 April 2014); MEDLINE (1946 to 28 April 2014); EMBASE (1988 to 28 April 2014); PsycINFO (1806 to 28 April 2014); CINAHL (EbscoHOST) (1981 to 28 April 2014); ProQuest Dissertations and Theses (1861 to 28 April 2014). We also searched the Database of Abstracts of Reviews of Effects (DARE, The Cochrane Library); reference lists of relevant studies; and conducted an extensive search for evaluations published in government reports and other grey literature including the CareSearch database (www.caresearch.com.au (September 2004 to February 2012) and websites of relevant organisations, for unpublished and ongoing studies. SELECTION CRITERIA: Randomised controlled trials (RCTs), quasi-randomised controlled trials, controlled before-and-after (CBA) studies and interrupted time series (ITS) studies of all formal training and support programs for palliative care volunteers. Programs or strategies in included studies were classified according to any stated or implied purpose: that is, whether they intended to build skills for the volunteer's role, to enhance their coping, or to maintain service standards. DATA COLLECTION AND ANALYSIS: Two review authors screened 2614 citations identified through the electronic searches after duplicates were removed. The search of grey literature through websites yielded no additional titles. We identified 28 potentially relevant titles but found no studies eligible for inclusion. MAIN RESULTS: We did not find any studies that assessed the effects of training and support strategies for palliative care volunteers that meet our inclusion criteria. The excluded studies suggest that trials in this area are possible. AUTHORS' CONCLUSIONS: The use of palliative care volunteers is likely to continue, but there is an absence of evidence to show how best to train or support them whilst maintaining standards of care for palliative care patients and their families.

Family caregivers of adults with acquired physical disability: Thai case-control study.

This case-control study compares the health of Thai family caregivers of adults with acquired physical disabilities with others without similar responsibilities. To ascertain health perceptions, face-to-face structured interviews using the Short Form (36) were conducted with participants randomly selected from primary care units in eastern Thailand (150 in each group). Despite similar sociodemographic profiles, caregivers reported more health problems and harmful health behaviours. Mean scores for physical and mental health were significantly lower. Factors contributing to poorer health among both caregivers and controls were older age, low educational level, insufficient income and existing health problems. Additional factors for caregivers were gender, spousal or in-law relationship, high dependency, long caregiving time, lack of previous experience and other caregiving responsibilities. This study identifies an urgent need for support to promote caregivers' health to enable them to maintain their vital role.

Cultural competence education for health professionals.

BACKGROUND: Cultural competence education for health professionals aims to ensure all people receive equitable, effective health care, particularly those from culturally and linguistically diverse (CALD) backgrounds. It has emerged as a strategy in high-income English-speaking countries in response to evidence of health disparities, structural inequalities, and poorer quality health care and outcomes among people from minority CALD backgrounds. However there is a paucity of evidence to link cultural competence education with patient, professional and organisational outcomes. To assess efficacy, for this review we developed a four-dimensional conceptual framework comprising educational content, pedagogical approach, structure of the intervention, and participant characteristics to provide consistency in describing and assessing interventions. We use the term 'CALD participants' when referring to minority CALD populations as a whole. When referring to participants in included studies we describe them in terms used by study authors. OBJECTIVES: To assess the effects of cultural competence education interventions for health professionals on patient-related outcomes, health professional outcomes, and healthcare organisation outcomes. SEARCH METHODS: We searched: MEDLINE (OvidSP) (1946 to June 2012); Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library) (June 2012); EMBASE (OvidSP) (1988 to June 2012); CINAHL (EbscoHOST) (1981 to June 2012); PsycINFO (OvidSP) (1806 to June 2012); Proquest Dissertations and Theses database (1861 to October 2011); ERIC (CSA) (1966 to October 2011); LILACS (1982 to March 2012); and Current Contents (OvidSP) (1993 Week 27 to June 2012).Searches in MEDLINE, CENTRAL, PsycINFO, EMBASE, Proquest Dissertations and Theses, ERIC and Current Contents were updated in February 2014. Searches in CINAHL were updated in March 2014.There were no language restrictions. SELECTION CRITERIA: We included randomised controlled trials (RCTs), cluster RCTs, and controlled clinical trials of educational interventions for health professionals working in health settings that aimed to improve: health outcomes of patients/consumers of minority cultural and linguistic backgrounds; knowledge, skills and attitudes of health professionals in delivering culturally competent care; and healthcare organisation performance in culturally competent care. DATA COLLECTION AND ANALYSIS: We used the conceptual framework as the basis for data extraction. Two review authors independently extracted data on interventions, methods, and outcome measures and mapped them against the framework. Additional information was sought from study authors. We present results in narrative and tabular form. MAIN RESULTS: We included five RCTs involving 337 healthcare professionals and 8400 patients; at least 3463 (41%) were from CALD backgrounds. Trials compared the effects of cultural competence training for health professionals, with no training. Three studies were from the USA, one from Canada and one from The Netherlands. They involved health professionals of diverse backgrounds, although most were not from CALD minorities. Cultural background was determined using a validated scale (one study), self-report (two studies) or not reported (two studies). The design effect from clustering meant an effective minimum sample size of 3164 CALD participants. No meta-analyses were performed. The quality of evidence for each outcome was judged to be low.Two trials comparing cultural competence training with no training found no evidence of effect for treatment outcomes, including the proportion of patients with diabetes achieving LDL cholesterol control targets (risk difference (RD) -0.02, 95% CI -0.06 to 0.02; 1 study, USA, 2699 "black" patients, moderate quality), or change in weight loss (standardised mean difference (SMD) 0.07, 95% CI -0.41 to 0.55, 1 study, USA, effective sample size (ESS) 68 patients, low quality).Health behaviour (client concordance with attendance) improved significantly among intervention participants compared with controls (relative risk (RR) 1.53, 95% CI 1.03 to 2.27, 1 study, USA, ESS 28 women, low quality). Involvement in care by "non-Western" patients (described as "mainly Turkish, Moroccan, Cape Verdean and Surinamese patients") with largely "Western" doctors improved in terms of mutual understanding (SMD 0.21, 95% CI 0.00 to 0.42, 1 study, The Netherlands, 109 patients, low quality). Evaluations of care were mixed (three studies). Two studies found no evidence of effect in: proportion of patients reporting satisfaction with consultations (RD 0.14, 95% CI -0.03 to 0.31, 1 study, The Netherlands, 109 patients, low quality); patient scores of physician cultural competency (SMD 0.11 95% CI -0.63 to 0.85, 1 study, USA, ESS 68 "Caucasian" and "non-Causcasian" patients (described as Latino, African American, Asian and other, low quality). Client perceptions of health professionals were significantly higher in the intervention group (SMD 1.60 95% CI 1.05 to 2.15, 1 study, USA, ESS 28 "Black" women, low quality).No study assessed adverse outcomes.There was no evidence of effect on clinician awareness of "racial" differences in quality of care among clients at a USA health centre (RR 1.37, 95% CI 0.97 to 1.94. P = 0.07) with no adjustment for clustering. Included studies did not measure other outcomes of interest. Sensitivity analyses using different values for the Intra-cluster coefficient (ICC) did not substantially alter the magnitude or significance of summary effect sizes.All four domains of the conceptual framework were addressed, suggesting agreement on core components of cultural competence education interventions may be possible. AUTHORS' CONCLUSIONS: Cultural competence continues to be developed as a major strategy to address health inequities. Five studies assessed the effects of cultural competence education for health professionals on patient-related outcomes. There was positive, albeit low-quality evidence, showing improvements in the involvement of CALD patients. Findings either showed support for the educational interventions or no evidence of effect. No studies assessed adverse outcomes. The quality of evidence is insufficient to draw generalisable conclusions, largely due to heterogeneity of the interventions in content, scope, design, duration, implementation and outcomes selected.Further research is required to establish greater methodological rigour and uniformity on core components of education interventions, including how they are described and evaluated. Our conceptual framework provides a basis for establishing consensus to improve reporting and allow assessment across studies and populations. Future studies should measure the patient outcomes used: treatment outcomes; health behaviours; involvement in care and evaluations of care. Studies should also measure the impact of these types of interventions on healthcare organisations, as these are likely to affect uptake and sustainability.

Decision influences and aftermath: parents, stillbirth and autopsy.

BACKGROUND: Stillbirth, among the most distressing experiences an adult may face, is also a time when parents must decide whether an autopsy or other post-mortem examinations will be performed on their infant. Autopsies can reveal information that might help explain stillbirth, yet little is known about how people make this difficult decision. OBJECTIVES: This study examines the influences on decisions about autopsy after stillbirth among Australian parents. DESIGN: The study involved secondary analysis of transcripts of three focus groups using qualitative content analysis. PARTICIPANTS AND SETTING: Seventeen parents of 14 stillborn babies participated in consultations around the revision of a perinatal mortality audit guideline. RESULTS: Parents shared the decision making. Four decision drivers were identified: parents' preparedness or readiness to make decisions; parental responsibility; concern for possible consequences of an autopsy and the role of health professionals. Each decision driver involved reasons both for and against autopsy. Two decision aftermath were also present: some parents who agreed to an autopsy were dissatisfied with the way the autopsy results were given to them and some parents who did not have an autopsy for their infant expressed some form of regret or uncertainty about the choice they made. CONCLUSIONS: To make decisions about autopsy after stillbirth, parents need factual information about autopsy procedures, recognition that there might be fear of blame, an environment of trust, and health services and professionals prepared and skilled for difficult conversations.

Experiences with neonatal jaundice management in hospitals and the community: interviews with Australian health professionals.

INTRODUCTION: Worldwide, neonatal jaundice accounts for considerable morbidity and mortality. Although severe adverse outcomes, such as hyperbilirubinaemia and kernicterus, are uncommon in high-income countries, these outcomes do occur, have enormous lifelong personal, health and social costs, and may be preventable. Evidence-based practice commonly relies on clinical guidelines; however, their implementation can be difficult. Implementation of neonatal jaundice care has been adversely affected by issues with professional boundaries, competing professional priorities and poor understanding of neonatal jaundice. This paper focuses on the perceptions and experiences of Australian health professionals involved in the management of neonatal jaundice. METHODS: Using a qualitative descriptive approach, semistructured interviews were undertaken to gain understanding of the experiences of health professionals in Australia across the scope of care for jaundiced newborns through an interpretivist approach and to identify possible gaps in the delivery of evidence-based care. Health professionals from a range of disciplines and care settings were recruited by purposive maximum variation sampling. Interviews were conducted face-to-face or by telephone with detailed notes taken and a field journal maintained. Interview scripts were verified by participants and imported into NVivo software. Data were analysed for major themes according to type and contexts of practice. RESULTS: Forty-one health professionals from six broad discipline areas were interviewed. Two major themes and explanatory subthemes were found. The first theme, falling through the gaps, highlighted gaps in evidence-based care, as described by four explanatory subthemes: professional boundaries, blindness to possibility of adverse outcomes, competing professional development priorities and unintended consequences.The second major theme, we know what should happen-but how?, described participant perceptions that it was known what was required to improve care but how to achieve such changes was unclear. The two subthemes are: improvements in education and training, and standardised policies and protocols. CONCLUSIONS: Multiple barriers to the provision of evidence-based care related to neonatal jaundice management are experienced by health professionals in Australia. Clinical guidelines are not sufficient to support health professionals deliver evidence-based care in the complex contexts in which they work. Implementation strategies for evidence-based practice need to take account of the experiences of health professionals and the challenges they face. Such strategies need to focus on improving collaboration between different disciplines for the well-being of those needing care. In the case of neonatal jaundice management, consideration is also needed in how to raise awareness of the importance of avoiding severe adverse outcomes, even when they might be rare, and how this might be done. Addressing issues that lead to disjointed care or poor knowledge of neonatal jaundice among health professionals is essential.

Interventions for supporting parents' decisions about autopsy after stillbirth.

BACKGROUND: Stillbirth remains one of the least understood areas of infant death and accurate data on the causes of stillbirth are the cornerstone of stillbirth prevention. An autopsy examination remains the gold standard post-mortem investigation for stillbirth. However, decisions about post-mortem investigations, particularly autopsy are difficult. The purpose of this review is to examine the effectiveness of methods to help parents who have experienced a stillbirth decide whether to have post-mortem investigations, including whether to have an autopsy performed. OBJECTIVES: The primary objectives were a) to examine the effectiveness of interventions to support parents' decisions about autopsy consent after a stillbirth on outcomes for parents, and b) to determine autopsy rates. Secondary objectives were to identify issues related to the acceptability of any interventions to parents and the feasibility of their implementation. SEARCH METHODS: We searched the Cochrane Pregnancy and Childbirth Group's Trials Register (29 October 2012), the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2012, Issue 10), MEDLINE (1966 to 24 July 2012) and EMBASE (1980 to 24 July 2012), Current Controlled Trials metaRegister (mRCT) (18 September 2012) and the WHO International Clinical Trials Registry Platform Search Portal (ICTRP) (18 September 2012). We also searched the websites of the Stillbirth and Neonatal Death Charity (SANDS) and International Stillbirth Alliance (ISA) (18 September 2012) and then subsequently searched the websites of all the ISA member organisations. SELECTION CRITERIA: Randomised controlled trials (RCTs) of interventions designed specifically to support parents who have experienced a stillbirth make decisions about their options for post-mortem investigations including all investigations after stillbirth compared with usual care. DATA COLLECTION AND ANALYSIS: Two review authors independently screened citations against the selection criteria.  MAIN RESULTS: No studies meeting the review inclusion criteria were identified. A search of 40 websites associated with supporting parents who experience stillbirth also found little reference to, or information about autopsy or other post-mortem examinations. AUTHORS' CONCLUSIONS: Support for parents making decisions about autopsy or other post-mortem examinations after stillbirth must rely on the ad hoc knowledge and experience of those involved at the time.