Dataset Information

Parents' experiences and satisfaction with care during the birth of their very preterm baby: a qualitative study.

ABSTRACT:

Objective

To assess parents' experiences and satisfaction with care during very preterm birth and to identify domains associated with positive and negative experiences of care.

Design

Qualitative study using semi-structured interviews.

Setting

Three neonatal units in tertiary care hospitals in South-East England.

Population

Thirty-two mothers and seven fathers who had a baby born before 32 weeks of gestation and spoke English well.

Methods

Semi-structured interviews were conducted. Results were analysed using thematic analysis.

Main outcome measures

Participants' experiences and satisfaction with care during the birth of their preterm baby.

Results

Overall, 80% of participants were extremely satisfied with the care during the birth of their preterm baby, seven were generally satisfied but felt some things could be improved and one was dissatisfied. Four key determinants of experiences of care were identified: staff professionalism, which included information and explanation, being calm in a crisis, appearing confident and in control, and conversely not listening to the woman; staff empathy, which included caring and emotional support, and encouragement and reassurance; involvement of the father; and birth environment.

Conclusions

Although the determinants of experiences of care are generally consistent with previous research on term births, unique factors to preterm birth were identified. These were the importance of the staff appearing calm during the birth, and the staff portraying confidence and taking control during the birth. Women valued being listened to, and both they and their partners valued staff helping fathers to feel involved during the birth.

SUBMITTER: Sawyer A

PROVIDER: S-EPMC3613739 | biostudies-literature | 2013 Apr

REPOSITORIES: biostudies-literature

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Publications

Parents' experiences and satisfaction with care during the birth of their very preterm baby: a qualitative study.

Sawyer A A Rabe H H Abbott J J Gyte G G Duley L L Ayers S S

BJOG : an international journal of obstetrics and gynaecology 20130104 5

<h4>Objective</h4>To assess parents' experiences and satisfaction with care during very preterm birth and to identify domains associated with positive and negative experiences of care.<h4>Design</h4>Qualitative study using semi-structured interviews.<h4>Setting</h4>Three neonatal units in tertiary care hospitals in South-East England.<h4>Population</h4>Thirty-two mothers and seven fathers who had a baby born before 32 weeks of gestation and spoke English well.<h4>Methods</h4>Semi-structured inte ...[more]

PMID: 23289929

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Project description:OBJECTIVES:To explore parents' experiences of seeking health care for their children and instead being accused by healthcare professionals of Shaken Baby Syndrome/Abusive Head Trauma (SBS/AHT), being reported to Social Services, undergoing judiciary processing, and the impact of these events on family (dis)integration. METHODS:Design: A qualitative study based on qualitative content analysis. Participants: Twelve parents in Sweden, mothers and fathers, seeking health care for their infants, encountering allegations of SBS/AHT, losing custody of their infants, and being subjected to a judiciary process, and finally regaining custody of their children. Data collection: In-depth interviews. RESULTS:An overarching theme 'Fighting for protection of their child after being trapped by doctors' and four sub-themes were developed to reflect the parents' experiences, reactions and interpretations. The first sub-theme, 'Being accused of injuring the child', illuminated the shock experienced when seeking care and instead being accused of being a perpetrator. The second, 'Chaos and powerlessness', refers to the emotions experienced when losing custody of the child and being caught in the enforcement of legislation by the authorities. The third, ´The unified fight against the doctors' verdict´, illustrates the parents' fight for innocence, their worry for the lost child, and their support and resistance. The fourth, 'The wounded posttraumatic growth', describes the emotions, grief, panic, anxiety, and challenges in reuniting the family, but also the parents' reflections on personal growth. Unanimously, they had experienced the authorities' inability to reconsider, and expressed a deep mistrust of paediatric care. CONCLUSIONS:Being wrongly accused of child abuse and alleged SBS/AHT evoked emotions of intense stress, but parents endured because of a successful fight to regain custody of their child. However, the trauma had a long-term impact on their lives with residual posttraumatic stress symptoms and mistrust towards healthcare services and the authorities. The results provide important inferences for restoring system failures within child protection services.

Project description:Introduction: Adults Born Very Preterm (ABP) are an underperceived but steadily increasing patient population. It has been shown that they face multiple physical, mental and emotional health problems as they age. Very little is known about their specific health care needs beyond childhood and adolescence. This article focuses on their personal perspectives: it explores how they feel embedded in established health care structures and points to health care-related barriers they face. Methods: We conducted 20 individual in-depth interviews with adults born preterm aged 20-54 years with a gestational age (GA) below 33 weeks at birth and birth weights ranging from 870-1,950 g. Qualitative content analysis of the narrative interview data was conducted to identify themes related to self-perceived health, health care satisfaction, and social well-being. Results: The majority (85%) of the study participants reported that their former prematurity is still of concern in their everyday lives as adults. The prevalence of self-reported physical (65%) and mental (45%) long-term sequelae of prematurity was high. Most participants expressed dissatisfaction with health care services regarding their former prematurity. Lack of consideration for their prematurity status by adult health care providers and the invisibility of the often subtle impairments they face were named as main barriers to receiving adequate health care. Age and burden of disease were important factors influencing participants' perception of their own health and their health care satisfaction. All participants expressed great interest in the provision of specialized, custom-tailored health-care services, taking the individual history of prematurity into account. Discussion: Adults born preterm are a patient population underperceived by the health care system. Longterm effects of very preterm birth, affecting various domains of life, may become a substantial burden of disease in a subgroup of formerly preterm individuals and should therefore be taken into consideration by adult health care providers.

Project description:ImportanceThe coronavirus disease 2019 (COVID-19) pandemic may exacerbate existing racial/ethnic inequities in preterm birth.ObjectiveTo assess whether racial/ethnic disparities in very preterm birth (VPTB) and preterm birth (PTB) increased during the first wave of the COVID-19 pandemic in New York City.Design, setting, and participantsThis cross-sectional study included 8026 Black, Latina, and White women who gave birth during the study period. A difference-in-differences (DID) analysis of Black vs White disparities in VPTB or PTB in a pandemic cohort was compared with a prepandemic cohort by using electronic medical records obtained from 2 hospitals in New York City.ExposuresWomen who delivered from March 28 to July 31, 2020, were considered the pandemic cohort, and women who delivered from March 28 to July 31, 2019, were considered the prepandemic cohort. Reverse transcription-polymerase chain reaction tests for the presence of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) were performed using samples obtained via nasopharyngeal swab at the time of admission.Main outcomes and measuresClinical estimates of gestational age were used to calculate VPTB (<32 weeks) and PTB (<37 weeks). Log binomial regression was performed to estimate Black vs White risk differences, pandemic cohort vs prepandemic cohort risk difference, and an interaction term representing the DID estimator. Covariate-adjusted models included age, insurance, prepregnancy body mass index, and parity.ResultsOf 3834 women in the pandemic cohort, 492 (12.8%) self-identified as Black, 678 (17.7%) as Latina, 2012 (52.5%) as White, 408 (10.6%) as Asian, and 244 (6.4%) as other or unspecified race/ethnicity, with approximately half the women 25 to 34 years of age. The prepandemic cohort comprised 4192 women with similar sociodemographic characteristics. In the prepandemic cohort, VPTB risk was 4.4% (20 of 451) and PTB risk was 14.4% (65 of 451) among Black infants compared with 0.8% (17 of 2188) VPTB risk and 7.1% (156 of 2188) PTB risk among White infants. In the pandemic cohort, VPTB risk was 4.3% (21 of 491) and PTB risk was 13.2% (65 of 491) among Black infants compared with 0.5% (10 of 1994) VPTB risk and 7.0% (240 of 1994) PTB risk among White infants. The DID estimators indicated that no increase in Black vs White disparities were found (DID estimator for VPTB, 0.1 additional cases per 100 [95% CI, -2.5 to 2.8]; DID estimator for PTB, 1.1 fewer case per 100 [95% CI, -5.8 to 3.6]). The results were comparable in covariate-adjusted models when limiting the population to women who tested negative for SARS-CoV-2. No change was detected in Latina vs White PTB disparities during the pandemic.Conclusions and relevanceIn this cross-sectional study of women who gave birth in New York City during the COVID-19 pandemic, no evidence was found for increased racial/ethnic disparities in PTB, among women who tested positive or tested negative for SARS-CoV-2.

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Project description:As part of a supplement entitled “Born Too Soon”, this paper focuses on care of the preterm newborn. An estimated 15 million babies are born preterm, and the survival gap between those born in high and low income countries is widening, with one million deaths a year due to direct complications of preterm birth, and around one million more where preterm birth is a risk factor, especially amongst those who are also growth restricted. Most premature babies (>80%) are between 32 and 37 weeks of gestation, and many die needlessly for lack of simple care. We outline a series of packages of care that build on essential care for every newborn comprising support for immediate and exclusive breastfeeding, thermal care, and hygienic cord and skin care. For babies who do not breathe at birth, rapid neonatal resuscitation is crucial. Extra care for small babies, including Kangaroo Mother Care, and feeding support, can halve mortality in babies weighing <2000 g. Case management of newborns with signs of infection, safe oxygen management and supportive care for those with respiratory complications, and care for those with significant jaundice are all critical, and are especially dependent on competent nursing care. Neonatal intensive care units in high income settings are de-intensifying care, for example increasing use of continuous positive airway pressure (CPAP) and this makes comprehensive preterm care more transferable. For health systems in low and middle income settings with increasing facility births, district hospitals are the key frontier for improving obstetric and neonatal care, and some large scale programmes now include specific newborn care strategies. However there are still around 50 million births outside facilities, hence home visits for mothers and newborns, as well as women’s groups are crucial for reaching these families, often the poorest. A fundamental challenge is improving programmatic tracking data for coverage and quality, and measuring disability-free survival. The power of parent’s voices has been important in high-income countries in bringing attention to preterm newborns, but is still missing from the most affected countries.

Project description:ImportanceRacial and ethnic minorities receive lower-quality health care than white non-Hispanic individuals in the United States. Where minority infants receive care and the role that may play in the quality of care received is unclear.ObjectiveTo determine the extent of segregation and inequality of care of very low-birth-weight and very preterm infants across neonatal intensive care units (NICUs) in the United States.Design, setting, and participantsThis cohort study of 743 NICUs in the Vermont Oxford Network included 117 982 black, Hispanic, Asian, and white infants born at 401 g to 1500 g or 22 to 29 weeks' gestation from January 2014 to December 2016. Analysis began January 2018.Main outcomes and measuresThe NICU segregation index and NICU inequality index were calculated at the hospital level as the Gini coefficients associated with the Lorenz curves for black, Hispanic, and Asian infants compared with white infants, with NICUs ranked by proportion of white infants for the NICU segregation index and by composite Baby-MONITOR (Measure of Neonatal Intensive Care Outcomes Research) score for the NICU inequality index.ResultsInfants (36 359 black [31%], 21 808 Hispanic [18%], 5920 Asian [5%], and 53 895 white [46%]) were segregated among the 743 NICUs by race and ethnicity (NICU segregation index: black: 0.50 [95% CI, 0.46-0.53], Hispanic: 0.58 [95% CI, 0.54-0.61], and Asian: 0.45 [95% CI, 0.40-0.50]). Compared with white infants, black infants were concentrated at NICUs with lower-quality scores, and Hispanic and Asian infants were concentrated at NICUs with higher-quality scores (NICU inequality index: black: 0.07 [95% CI, 0.02-0.13], Hispanic: -0.10 [95% CI, -0.17 to -0.04], and Asian: -0.26 [95% CI, -0.32 to -0.19]). There was marked variation among the census regions in weighted mean NICU quality scores (range: -0.69 to 0.85). Region of residence explained the observed inequality for Hispanic infants but not for black or Asian infants.Conclusions and relevanceBlack, Hispanic, and Asian infants were segregated across NICUs, reflecting the racial segregation of minority populations in the United States. There were large differences between geographic regions in NICU quality. After accounting for these differences, compared with white infants, Asian infants received care at higher-quality NICUs and black infants, at lower-quality NICUs. Explaining these patterns will require understanding the effects of sociodemographic factors and public policies on hospital quality, access, and choice for minority women and their infants.

Dataset Information

Parents' experiences and satisfaction with care during the birth of their very preterm baby: a qualitative study.

Objective

Design

Setting

Population

Methods

Main outcome measures

Results

Conclusions

Publications

Parents' experiences and satisfaction with care during the birth of their very preterm baby: a qualitative study.

Similar Datasets

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