'Do you people even think about the lives you ruin?' Perspectives and influences on the provision of care for extreme preterm and periviable babies in North Queensland

Susan Ireland studied the provision of care for periviable babies in North Queensland. Despite the pessimism from health care professionals about offering this care, parents were mostly appreciative and coped with subsequent disabilities, contextualising them in the baby's struggle for survival. Parents who regret the care provided voiced perinatal concerns, which, if heeded would have resulted in redirection of care. Findings from this study have led to changes in practise

Evaluation of the Child Maintenance Options Service

Aim We wanted to establish whether the Child Maintenance Options Service telephone helpline increased the likelihood of separated parents making arrangements for child maintenance. What is the Child Maintenance Options Service? Definitions of child maintenance vary, for this study it was defined as financial support that helps towards a child’s everyday living costs when the parents have separated. The Child Maintenance Options Service offers information and support to help parents make decisions about their child maintenance arrangements. Findings Overall, parents were positive about the helpfulness of the service. While positive results were achieved after just one or two short telephone calls, the service was most effective for those who had more in-depth and personalised contact with the service. Maintenance arrangements Around 7% of parents, referred by the Jobcentre Plus, who had more in-depth interaction with the service later made maintenance arrangements that they would not otherwise have had. Parents who were more recently separated and where there was regular contact between the non-resident parent and the child and between parents, were more likely to have a maintenance arrangement in place eight to nine months after contact with the service. There was some evidence that the service helps to ensure that maintenance is working. Over two-fifths of parents who had some contact with the service did not have a maintenance arrangement eight to nine months later. Methodology We conducted a telephone survey of a random sample of helpline users, between February and September 2009. A total of 2,767 parents participated in two research interviews: an initial ‘baseline’ and an ‘outcomes’ interview around six to nine months later. We worked with freelancer Eleanor Ireland on this project

Negativity about the outcomes of extreme prematurity a persistent problem - a survey of health care professionals across the North Queensland region

Background: Extremely preterm babies are at risk of significant mortality and morbidity due to their physiological immaturity. At periviable gestations decisions may be made to either provide resuscitation and intensive care or palliation based on assessment of the outlook for the baby and the parental preferences. Health care professionals (HCP) who counsel parents will influence decision making depending on their individual perceptions of the outcome for the baby. This paper aims to explore the knowledge and attitudes towards extremely preterm babies of HCP who care for women in pregnancy in a tertiary, regional and remote setting in North Queensland. Methods: A cross sectional electronic survey of HCP was performed. Perceptions of survival, severe disability and intact survival data were collected for each gestational age from 22 to 27 completed weeks gestation. Free text comment enabled qualitative content analysis. Results: Almost all 113 HCP participants were more pessimistic than the actual outcome data suggests. HCP caring for women antenatally were the most pessimistic for survival (p = 0.03 at 23 weeks, p = 0.02 at 25,26 and 27 weeks), severe disability (p = 0.01 at 24 weeks) and healthy outcomes (p = 0.01 at 24 weeks), whilst those working in regional and remote centres were more negative than those in tertiary unit for survival (p = 0.03 at 23,24,25 weeks). Perception became less negative as gestational age increased. Conclusion: Pessimism of HCP may be negatively influencing decision making and will negatively affect the way in which parents perceive the chances of a healthy outcome for their offspring

Exploring implicit bias in the perceived consequences of prematurity amongst health care providers in North Queensland – a constructivist grounded theory study

Background: A study was done to explore the attitudes of relevant health care professionals (HCP) towards the provision of intensive care for periviable and extremely premature babies. Methods/design: Applying a constructivist grounded theory methodology, HCP were interviewed about their attitudes towards the provision of resuscitation and intensive care for extremely premature babies. These babies are at increased risk of death and neurodisability when compared to babies of older gestations. Participants included HCP of varying disciplines at a large tertiary centre, a regional centre and a remote centre. Staff with a wide range of experience were interviewed. Results: Six categories of i) who decides, ii) culture and context of families, iii) the life ahead, iv) to treat a bit or not at all, v) following guidelines and vi) information sharing, emerged. Role specific implicit bias was found as a theoretical construct, which depended on the period for which care was provided relative to the delivery of the baby. This implicit bias is an underlying cause for the negativity seen towards extreme prematurity and is presented in this paper. HCP caring for women prior to delivery have a bias towards healthy term babies that involves overestimation of the risks of extreme prematurity, while neonatal staff were biased towards suffering in the neonatal period and paediatricians recognise positivity of outcomes regardless of neurological status of the child. The implicit bias found may explain negativity towards intensive care of periviable neonates. Conclusion: Understanding the presence and origins of role specific implicit bias may enable HCP to work together to improve care for parents preparing for the delivery of extremely premature babies

Perspectives of time: a qualitative study of the experiences of parents of critically ill newborns in the neonatal nursery in North Queensland interviewed several years after the admission

Design: A qualitative study informed by grounded theory principles to explore the experiences of parents who had extremely preterm or babies with antenatally diagnosed life-Threatening diagnoses who were cared for in a regional tertiary neonatal unit. The study was conducted when the child was old enough to be diagnosed with long-Term neurodevelopmental or medical sequelae. Setting: North Queensland is a large area in Eastern Australia of 500 000 km 2, which is served by one tertiary neonatal unit. Participants: Seventeen families representing 21 extremely preterm babies and one baby with congenital malformations who was not expected to survive prior to delivery (but did) were interviewed using grounded theory principles. Interviews were coded and themes derived. Results: Parents who recollect their neonatal experiences from 3 to 7 years after the baby was cared for in the neonatal intensive care described negative themes of grief and loss, guilt and disempowerment. Positive enhancers of care included parental strengths, religion and culture, family supports and neonatal unit practices. Novel findings included that prior pregnancy loss and infertility formed part of the narrative for parents, and hope was engendered by religion for parents who did not usually have a religious faith. Conclusions: An understanding of both the negative aspects of neonatal care and the positive enhancers is necessary to improve the neonatal experience for parents. Parents are able to contextualise their previous neonatal experiences within both the long-Term outcome for the child and their own life history

Understanding the Blogging Practices of Women Undergoing In Vitro Fertilization (IVF): A Discourse Analysis of Women’s IVF Blogs

Infertility and its associated treatments, including in vitro fertilization (IVF), can have a profound impact on the emotional health and well-being of women desiring to become mothers. Researchers have measured the impact of infertility and described the experience of infertility and its treatment, leaving the rich descriptions of the IVF experience as captured in women’s blogs to be explored. This discourse analysis describes the blogging practices of women undergoing IVF, exploring both the content and function of the IVF blog discourse. Data were collected from the text of seven women’s blogs (n=1,149 blog posts) and resulted in four main functions of the discourse: creation of and connection to a community, emotional support, blogging as therapy, and creation of an IVF resource. Findings suggest that blogging can have a positive impact on the psychosocial consequences experienced by women in fertility treatment

The use of nitric oxide in premature neonates: a 15-year retrospective chart review

Aim: We aim to describe some characteristics of premature neonates which may predict response to inhaled nitric oxide (iNO). Methods: Neonates < 37 weeks without congenital abnormalities who received a single episode of iNO between January 2002 to December 2016 were included in this retrospective chart review. For the purposes of this study, we defined a response to iNO as being any reduction in fraction of inhaled oxygen (FiO2) at the time of iNO weaning. Results: 52 infants with a 57.7% overall survival were included. There was no significant difference in survival between gender or birth weight groups. Responders were found to be of older gestational age (p = 0.045), had a longer duration of iNO treatment (p = 0.004), longer time to weaning (p = 0.014) and earlier initiation of treatment (p = 0.010). Infants < 1,000 g were less likely to respond to iNO therapy (p = 0.006) and had a higher FiO2 at weaning (p = 0.037). Gender had no effect on response to iNO therapy (p = 0.176). Infants with preterm premature rupture of membranes (PPROM) were treated for longer prior to weaning (p = 0.025), treated for longer overall (p = 0.005) and had a lower FiO2 at weaning (p = 0.018). There was no significant correlation between methaemoglobin level and duration of iNO (R = -0.08; p = 0.57). Conclusions: We found that premature infants with birth weight > 1,000 g and older gestational age were more likely to respond to iNO therapy. Our findings also suggest that infants with PPROM may benefit from the use of iNO for respiratory distress. As a result, these findings support the individualized use of iNO in select premature infants whose premorbid characteristics deem them more likely to have a positive response