Open access Original research

BMJ Open: first published as 10.1136/bmjopen-2023-075896 on 13 February 2024. Downloaded from http://bmjopen.bmj.com/ on February 15, 2024 by guest. Protected by copyright.
Experiences with neonatal jaundice
management in hospitals and the
community: interviews with Australian
health professionals
Claudia Trasancos ‍ ‍, Dell Horey

To cite: Trasancos C, Horey D. ABSTRACT

Experiences with neonatal Introduction Worldwide, neonatal jaundice accounts
STRENGTHS AND LIMITATIONS OF THIS STUDY
jaundice management in for considerable morbidity and mortality. Although ⇒ Several health disciplines across geographical and
hospitals and the community: work settings in Australia were involved in this
severe adverse outcomes, such as hyperbilirubinaemia
interviews with Australian study, providing a broad range of perspectives.
health professionals. BMJ Open
and kernicterus, are uncommon in high-­income
countries, these outcomes do occur, have enormous ⇒ Limitations include the extended period for data col-
2024;14:e075896. doi:10.1136/
bmjopen-2023-075896 lifelong personal, health and social costs, and may be lection and analysis, which were driven by practical
preventable. Evidence-­based practice commonly relies constraints. While not ideal, delay was unavoidable
► Prepublication history and allowed opportunity to confirm that little change
on clinical guidelines; however, their implementation can
and additional supplemental in neonatal jaundice management and clinical
material for this paper are
be difficult. Implementation of neonatal jaundice care
has been adversely affected by issues with professional guidelines had occurred.
available online. To view these
boundaries, competing professional priorities and poor ⇒ The decision not to record interviews encouraged
files, please visit the journal
online (https://doi.org/10.1136/​ understanding of neonatal jaundice. This paper focuses participation. All interview scripts were verified by
bmjopen-2023-075896). on the perceptions and experiences of Australian health interviewees.
professionals involved in the management of neonatal ⇒ The insider–outsider status of the primary research-
Received 22 May 2023 jaundice. er offered potential to interpret data in different
Accepted 09 January 2024
Methods Using a qualitative descriptive approach, ways, making reflexivity critical and the field journal
semistructured interviews were undertaken to gain invaluable.
understanding of the experiences of health professionals in ⇒ This study presents the most contemporary views
Australia across the scope of care for jaundiced newborns of health professionals on how neonatal jaundice is
through an interpretivist approach and to identify managed in Australia.
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 health professionals deliver evidence-­based care in the
sampling. Interviews were conducted face-­to-­face or by complex contexts in which they work. Implementation
telephone with detailed notes taken and a field journal strategies for evidence-­based practice need to take
maintained. Interview scripts were verified by participants account of the experiences of health professionals and
and imported into NVivo software. Data were analysed for the challenges they face. Such strategies need to focus
major themes according to type and contexts of practice. on improving collaboration between different disciplines
Results Forty-­one health professionals from six broad for the well-­being of those needing care. In the case of
discipline areas were interviewed. Two major themes neonatal jaundice management, consideration is also
and explanatory subthemes were found. The first theme, needed in how to raise awareness of the importance of
falling through the gaps, highlighted gaps in evidence-­ avoiding severe adverse outcomes, even when they might
based care, as described by four explanatory subthemes: be rare, and how this might be done. Addressing issues
professional boundaries, blindness to possibility of adverse that lead to disjointed care or poor knowledge of neonatal
outcomes, competing professional development priorities jaundice among health professionals is essential.
© Author(s) (or their
employer(s)) 2024. Re-­use and unintended consequences.
permitted under CC BY-­NC. No The second major theme, we know what should happen— BACKGROUND
commercial re-­use. See rights but how?, described participant perceptions that it was
and permissions. Published by Worldwide, neonatal jaundice accounts for
known what was required to improve care but how to
BMJ. considerable morbidity and mortality.1–4 In
achieve such changes was unclear. The two subthemes
La Trobe University, Melbourne, are: improvements in education and training, and 2016, neonatal jaundice accounted for over
Victoria, Australia
standardised policies and protocols. 1300 deaths per 100 000 live births and was
Conclusions Multiple barriers to the provision of ranked seventh among all causes of death in
Correspondence to
Dr Claudia Trasancos; evidence-­based care related to neonatal jaundice the early-­neonatal period.2–4 Severe adverse
​claudiatrasancos@​yahoo.​com.​ management are experienced by health professionals in outcomes associated with neonatal jaundice
au Australia. Clinical guidelines are not sufficient to support are uncommon in high-­income countries, but

Trasancos C, Horey D. BMJ Open 2024;14:e075896. doi:10.1136/bmjopen-2023-075896 1

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do occur and may be preventable, creating an ongoing information to them about the study, including consent
challenge for healthcare standards.4 5 In Australia, the forms to complete. Potential participants approached
findings from a surveillance study conducted between directly, including general practitioners (GPs), obstetri-
2010 and 2013 to determine the incidence of extreme cians, paediatricians, midwives in private practice and
hyperbilirubinaemia (9.4 per 100 000 live births) and maternal and child health nurses, were also sent this
bilirubin encephalopathy (0.6 per 100 000 live births) in information. It was anticipated that approximately 40
term and near-­term neonates6 showed that at least 20–25 participants would be needed based on five participants
babies are affected every year. Extreme neonatal hyperbil- from each state and territory and the number of disci-
irubinaemia can result in long-­term neurological dysfunc- plines approached. Recruitment progressed to ensure
tion, including brain damage and even death.4–10 the desired mix of disciplines, geographical areas and
Deficiencies in the care of jaundiced newborns have settings and continued until data saturation was achieved
been identified as contributing to adverse outcomes.11–14 and no new themes emerged.26 Data were collected
Care deficiencies need to be minimised, particularly when over 2 years, between August 2011 and December
adverse consequences have enormous personal costs as 2013. Interview topics (see online supplemental mate-
well as lifelong health and social costs.14 15 Modern health- rial) included personal preparation and experiences
care, built on evidence-­based practice, commonly relies of neonatal jaundice; knowledge of jaundice-­ related
on clinical guidelines that are developed from the best neonatal morbidity, associated policies and guidelines;
available evidence, even when such evidence is weak. and thoughts about any practice adjustments needed
Implementation of clinical guidelines can be difficult. for better neonatal jaundice management. Interviews
A meta-­ review of 25 systematic reviews exploring the were conducted either face-­to-­face or by telephone after
barriers and facilitators to guideline implementation16 participants provided written informed consent and
identified five contexts showing its complexity: the clin- ranged from 20 to 120 min in duration (average 65 min).
ical guidelines themselves, the health system, the sociopo- Interviews were not audio-­recorded. Detailed notes were
litical context, health professionals and patients. taken, including verbatim comments. Interview scripts
While the role of health professionals is critical to
were completed after each interview to minimise recall
evidence-­based care, their experiences in some areas of
bias27 and returned to participants for verification. This
practice are largely unknown. The focus of this paper is
approach aimed to facilitate participation by recognising
the management of neonatal jaundice, which relies on the
sensitivities with audio-­recordings about clinical care. A
use of clinical guidelines, and where rare, severe, adverse
field journal was maintained to assist in validation and
outcomes do occur. This study aims to explore health
consistency.28
professionals’ experiences and perspectives of neonatal
Following verification by participants, interview scripts
jaundice management in Australia to identify possible
were imported into NVivo qualitative research software
gaps in the delivery of evidence-­based care. This study is
(NVivo V.10 and V.12 for Mac, QSR International) for
part of a mixed-­methods study that includes assessment
thematic content analysis.29 All scripts were thoroughly
of neonatal jaundice guidelines used across Australia.17
These guidelines in Australia are based on international read and reread to ensure accuracy, gain an overall
guidelines18–20 and, as shown in a recent comparative impression of the data and to identify recurring infor-
review,17 have changed little over the past decade. mation and variations. The preliminary analysis included
coding for categories and major themes according to
the different types and contexts of practice. Preliminary
METHODS codes were refined as coding progressed and as themes
Using a qualitative descriptive design,21 22 semistructured emerged. Themes were tested within and between cases
interviews were undertaken to gain understanding of the to ensure integrity of the theme boundaries. Coding was
experiences of health professionals in Australia across the checked several times, including independent confirma-
scope of care for jaundiced newborns through an inter- tion by two experienced researchers who read the first
pretivist approach23 and to identify possible gaps in the five interviews and by a third researcher who compared
delivery of evidence-­based care. We considered evidence-­ final codes against a data sample. Illustrative quotes were
based care to comprise the three elements nominated by identified by discipline.
Sackett et al: use of the best available research evidence; Reflexivity was critical as the first author intersected
application of clinical expertise; and consideration of with the data in several ways. The study was part of
patient ‘predicaments, rights and preferences’.24 doctoral studies motivated by personal experience as a
A purposive maximum variation sampling process was mother of a child diagnosed with kernicterus and also as
adopted.25 Potential participants were approached in a nurse and policy and programme advisor. Ezzy observed
writing either directly, for those in private practice, or that personal experience typically shapes the definition
indirectly via institutional leaders for those working in of a research problem30 and how data are collected and
maternity hospitals, universities and government depart- analysed; and so is also a data source about the research
ments. These leaders identified potential participants problem (2002: 153). A mindset of ‘conscious partiality’
associated with neonatal jaundice care and forwarded (1999: 20)31 was cultivated.

2 Trasancos C, Horey D. BMJ Open 2024;14:e075896. doi:10.1136/bmjopen-2023-075896

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Patient and public involvement Findings
There was no patient involvement in the study. The Two major themes and explanatory subthemes were
approach taken for this research was to focus on prac- found (figure 1).
tice aspects of evidence-­based care rather than look at the
impact of current practice on infants and families. Study Falling through the gaps
participants were all health professionals who provided This theme reflected views and reported experiences
written informed consent. Plans for dissemination of that some neonates were ‘slipping through the net’
results were relayed to all participants and included publi- as a consequence of their neonatal jaundice manage-
cation in a journal and presentation in various fora. ment. Four explanatory subthemes were associated
with this theme: professional boundaries, blind-
ness to possibility of adverse outcomes, competing
RESULTS
professional development priorities and unintended
Participants
consequences.
Forty-­one registered health professionals working with
jaundiced newborns in some way were interviewed. Partic-
ipants came from six broad discipline areas (nursing (3), Professional boundaries
midwifery (15), medicine (12), pathology (4), clinical Gaps arising from issues related to professional bound-
education (6) and policy development (8), and worked aries were revealed across different professional groups
in a range of settings. and included limitations in knowledge and experience.
The 12 doctors came from four different specialty areas Relationships and communication appeared to be
(general practice/obstetrics, paediatrics and neona- affected. Knowledge gaps and lack of experience meant
tology). The nurses were involved in neonatal care, both adverse outcomes were possible. For example, several
within the hospital and in the community. The midwives doctors linked lack of knowledge in junior doctors as a
worked in hospital and/or private practice, involving risk, for example:
homebirth and/or postnatal care. The clinical educa- …Trying to get exposure to cover all aspects of
tion group included maternal and child health, neonatal neonatal care has been an ongoing issue. Learning
care and midwifery care. The majority of participants about neonatal jaundice is not in any formal way
(66%) had 10 or more years of professional experience. mandated in training of general paediatricians.
Five participants worked across state boundaries (12%). (neonatologist_C)
Seven participants working in policy development also
had clinical roles. All eight participants in this group Midwives, including educators and those involved in
were employed by health organisations and were engaged policy development, also linked lack of adequate knowl-
specifically in the development of neonatal jaundice edge and clinical experience to poorer outcomes. One
policy. midwife summed up the situation this way:

Figure 1 Analysis of 41 interviews with health professionals: two major themes and explanatory subthemes.

Trasancos C, Horey D. BMJ Open 2024;14:e075896. doi:10.1136/bmjopen-2023-075896 3

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…. [Neonatal jaundice] is probably not managed that among less experienced professionals when potential
well…. there is the potential for it to get missed…. cases were suspected.
there is no surveillance strategy…. there is a deficit
…if you are seeing newborn babies all the time, your
in the learning…. junior doctors lack experience;
skills are better, your assessment skills are better,
they are not good at putting the picture together;
when compared to midwives who only occasionally
they may not even have seen the baby….midwives
work with babies; you have a different perspective.
are generally not able to sign pathology slips….If the
There is a potential for over-­ reacting and under-­
baby is starting to get jaundice within 24 hours – will
reacting. I tend to overreact. (educator, maternal and
call the paediatrician to look at the baby; we monitor child health/midwife_C)
– see how it goes…make sure feeding is happening
frequently…If early discharge –will home visit……It
might not be until the home visit that the midwife Blindness to possibility of adverse outcomes
sees that the baby is bright yellow…Parents may think Several interviewees could not believe that adverse
the baby has olive skin. Parents are not trained to outcomes from neonatal jaundice occurred in Australia.
look and assess…. Guidelines and protocols are only Two participants were openly cynical about the possi-
looked at when an issue comes up. (midwife_C) bility of kernicterus diagnoses in Australia, including one
Professional boundaries rising from poor relation- paediatrician, who despite reporting experience with
ships and poor communication created potential gaps many jaundiced infants, had had no direct experience of
in care, particularly when role conflict existed. The most adverse outcomes, so felt one was unlikely. Similarly, one
common example was differences between medical and midwife explicitly questioned whether a kernicterus diag-
midwifery paradigms, sometimes described as interven- nosis was possible in Australia. Several others commented
tionist and non-­interventionist approaches. The impact on the rarity of severe neonatal jaundice in Australia, also
was evident in descriptions of assessment approaches. raising doubts about whether serious adverse outcomes
Midwives referred to using ‘intuition’ or ‘instinct’ as part occur.
of their professional assessment. In contrast, medical Knowledge of adverse outcomes associated with neonatal
practitioners were likely to report erring on the side of jaundice was not considered important in Australian
caution for both testing and treating, ‘just in case’. As one conditions according to some interviewees. When talking
about their clinical education, the term ‘kernicterus’ was
said:
recalled by some midwives as a ‘scary thing’ or reportedly
…we have to do that for fear of kernicterus. At a serum mentioned ‘in passing’. Despite several comments about
bilirubin level of 310, the baby receives treatment. It higher proportions of Asian women readmitted with jaun-
is not necessarily the right thing to do but don’t want diced babies, only five participants (two paediatricians, a
to miss pathological jaundice. (paediatrician_C) neonatologist, midwife and neonatal nursing educator)
considered the needs of genetic diversity and ongoing
Tension between different professional relation- population changes.
ships was evident in several interviews, such as between Very few participants recognised the increased risk for
pathology personnel and clinical staff: First Nation Australians. One paediatrician who worked
There have been specific problems measuring bil- in an area with a higher proportion of First Nation resi-
irubin for a long time; trying to get it right; there dents and those with Asian backgrounds questioned the
is a combination of things; measurement, early dis- association with skin colour, commenting:
charge, lack of knowledge, lab measuring delay, hae- One cannot make assumptions about ethnic heritage;
molysed samples. Lab error is unlikely; if there is a there has been much exchange of genetic material
mistake it is repeated. (pathologist_C) over the years. Pigmentation is not fully developed in
the first few weeks of life. (paediatrician_A)
Professional boundaries affecting care were also
reported within specialty groups in the same discipline,
for example: Competing professional development priorities
There are conflicting views between the medical con- Almost all health professionals acknowledged difficulties
sultant and the paediatrician… for example in a baby in keeping abreast of research evidence; some felt individ-
with high SBR [serum bilirubin] the medical consul- uals were responsible to keep up to date, but most relied
tant will say put the baby under two lights; the paedi- on others to make research information available.
atrician will visit later and say ‘no just use one light’. I don’t go looking for [information, literature].
(midwife_A) (midwife_B)

Professional boundaries affecting communication Participants who felt unable to keep up with research
were most evident in accounts of absent feedback when also talked about other priorities, lack of access to
neonatal jaundice was suspected, affecting confidence resources or the size of the challenge:

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Keeping up to date with research is difficult. A signif- Issues arising from early discharge included varia-
icant number of midwives don’t do it well. If outside discharge care, where neonatal jaundice
bility in post-­
the system, it is difficult, if not enrolled in University. management was variously described as ‘haphazard’ or
How many journals can you subscribe to? It costs dependent on ‘competing demands’ with ‘no dedicated
money. You rely on Google. You give up. Access is dif- surveillance’ measures in place. While one neonatologist
ficult. Enrolling in University costs money and you described a robust community system, numerous others,
need time. (midwifery educator/consultant_C) including other neonatologists, did not concur:
Most participants agreed that neonatal jaundice was Need better way of streamlining taking serum bili-
one of many conditions that health professionals need to rubin levels at home. Would need to report to the
know about. Several acknowledged lack of understanding registrar. All midwives at home should perhaps carry
of normal physiology or differences between physiolog- a bilirubinometer. Institutions vary—each hospital
ical and pathological jaundice. Overall, professional will have its own policies. …. Need resources for daily
development opportunities on neonatal jaundice care home visits for a minimum of 3 days until the mater-
were limited. nal and child health nurse kicks in; need lactation
support. (neonatologist_C)
Unintended consequences Contributing to uncertainty about patient care trajec-
Systemic issues within service delivery and organisations tories was growing reliance on a casualised workforce,
revealed unintended consequences, such as the absence particularly in midwifery, which was seen to affect skill
of mechanisms to document adverse effects. Some and knowledge development:
participants pointed out that without such information,
measuring impact is difficult. Participants, cognisant of Midwives, we are reliant on them for recognising and
potential consequences, remarked: assessing; they are a mixed bunch; quite a number
do shifts in post-­natal ward. They are semi-­deskilling
One may not know the outcome of severe neonatal themselves. Not keeping up to date. They occasion-
jaundice for years. Hearing loss may be evident with- ally take a while to properly communicate regarding
in hours. (pathologist_D&F) jaundiced cases. (paediatrician_C)
Common reasons for readmission are G6PD, ABO Poor knowledge of neonatal jaundice among health
incompatibility, dehydration, bruising. There is less professionals also affects communication with parents
awareness around these. The number of babies read- about the condition. Some participants pointed out that
mitted is not coded as separate. It is not easy to get no specific information for parents existed while others
this information. (neonatologist_E) were concerned not to overwhelm parents with more
information than needed.
Many interviewees commented on the potential cost of
testing, which was commonly considered in terms of over- We know what should happen—but how?
testing and overtreatment. One participant considered The second major theme was the perception among
the prevention of severe neonatal jaundice attributed to participants that while they knew what was required to
ABO incompatibility and said: improve care, they were unsure how to achieve those
changes.
You would need to test every parent and child. Test fa-
thers, test cord blood. Per baby it would be $150 extra
Improvements in education and training
assuming 200 000 babies born per year—there would
Almost all participants expressed needs for better educa-
not be much benefit. (paediatrician_C) tion, particularly for midwives and junior doctors and
In contrast, another participant felt it would be cheaper parents. Several participants suggested that links between
to test every baby ‘as then the health service cannot be curriculum, guidelines and clinical practice were missing:
sued….’. Several doctors and a pathologist raised the There was a little bit of education around neonatal
potential costs associated with one missed case. jaundice during medical training; not thorough; not
Early discharge of mothers and babies was commonly much at all. It should be covered better especially
identified as a potential problem for neonatal jaundice for GP obstetricians. My general knowledge is not
identification. All participants working in hospital post- great about neonatal jaundice. There is a midwife
natal wards identified early discharge as a barrier to devel- educator… maybe should have a bigger role. This
oping better clinical knowledge: may include keeping in touch with current research
publications; to let us know what is out there. (GP/
There is a concern about early discharge. It is a prob-
obstetrician_C)
lem in Australia. It seems greater [than in other
countries]. Our women get kicked out. Monitoring Guidelines were frequently portrayed as ineffective tools
is variable across Australia. What is the monitoring for evidence-­based care. The development and update of
process? (neonatologist_C) clinical guidelines were described as time-­ consuming.

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Several participants reported that guidelines were not Four of five contexts relevant to clinical practice
included in their professional training and were consid- guideline implementation identified in the meta-­review
ered difficult to navigate and not specific enough to be exploring barriers and facilitators16 were evident in this
useful. study: the clinical guidelines themselves, the health
system, the sociopolitical context and health profes-
Guidelines. Don’t use them, don’t look at these. sionals. This study also identified particular challenges
(midwifery educator_C) for evidence-­based care when adverse events are rare.
We need concrete guidelines around when to take Consistent with the most frequently mentioned barrier
SBR [serum bilirubin], for example if the jaundice is to guideline implementation in the meta-­review16 were
below the belly button, you need to do a blood test. clinical guidelines themselves, particularly with lack of
Need to take way subjectivity. (educator/maternal clarity. Other issues such as problems with credibility
and child health coordinator/midwife_C) and day-­to-­day practice feasibility were also present and
appear to be related to inconsistency, lack of standard-
Standardised policies and protocols isation and unnecessary wordiness. Poor accessibility to
Most participants described policies and processes relating guidelines exacerbated dissatisfaction and fuelled scepti-
to neonatal jaundice management as variable and viewed cism about guideline usefulness.
as significant barriers to achieving necessary changes. Barriers identified in the health system context in
Underpinning concerns were inconsistent or confusing the meta-­review, lack of time, resources and specialised
language. Several participants pointed to examples of how personnel16 were also raised in this study. Two other health
different types of jaundice were described and assessed. system developments were linked to possible unintended
For example, ‘clinical jaundice’ was used to describe consequences for neonatal jaundice management. Early
jaundice requiring a blood test and ‘jaundice’ used when discharge practices were directly attributed to creating
‘severe jaundice’ meant. Conflation created confusion— difficulties for timely diagnosis. Participants pointed out
and, in the views of some participants—diminished the that in the context of early discharge, greater need for
importance of severe bilirubin among clinicians. parent awareness of neonatal jaundice exists. Predictors
While calls for consistency in neonatal jaundice manage- of discharge ‘readiness’ explored in a US study involving
ment came from across discipline areas, all conceded that 185 mothers suggest that potential problems could be
reaching agreement was difficult. Some health profes- ameliorated by good pre-­discharge education practices,
sionals felt there was already multidisciplinary collabora- although education depends on what, and how, nurses
tion in policy and guideline development, while others are able to teach mothers before leaving hospital.32 Work-
believed such collaboration to be missing. Challenges force casualisation was another health system issue iden-
included a ‘them-­ and-­us’ mindset, including between tified as a potential barrier to good care for midwives in
tertiary centres and smaller services, and even siloed particular, reducing opportunities to acquire and rein-
approaches within tertiary centres. force neonatal jaundice knowledge.
The wordiness of guidelines was frequently criticised. The political and social context identified in the meta-­
Poor accessibility exacerbated dissatisfaction. Participants review included barriers such as absent or poor leader-
using guideline websites found navigation difficult. The ship, teamwork difficulties and lack of agreement between
majority felt current guidelines needed to be reviewed, colleagues around guideline implementation.16 In this
updated, or in some views, developed. Some called for study, issues of leadership and implementation agree-
more prescriptive guidelines ‘to rule out grey areas’. ment were also raised although interprofessional conflict
Guidelines—they are not easy to find; website is not was more frequently reported. Problems with interpro-
intuitive, guidelines are under ‘metabolic’ (section). fessional boundaries in healthcare can be found across
At 03:00 in the morning, when everyone is tired, the literature. For example, professional boundaries have
(guidelines are) hard to find. On-­ line—so many impeded attempts to deliver best practice in unintended
guidelines. Use most recent but many are out of date. or unexpected ways. In Wales, an attempt to reduce unnec-
(paediatrician_A) essary childbirth interventions by promoting midwife-­led
care using a clinical pathway found stricter boundary
delineation actually reduced the scope of midwifery prac-
tice33; whereas in Australia, interprofessional differences
DISCUSSION affected communication and information transfer in a
In looking at the experiences of Australian health profes- study looking at child and family health services.34 Prob-
sionals with neonatal jaundice management, challenges lems with interprofessional boundaries and communica-
with implementing evidence-­ based care have been tion have consistently been highlighted in investigations
revealed. Several gaps in effective implementation were into patient harm in maternity and neonatal services in
identified alongside feelings of inability to enact effective England.35–38
change. These issues are likely to apply beyond neonatal Key to resolving professional conflicts is understanding
jaundice management to the wider use of evidence-­based that divergent perceptions do arise between disciplines,
care. and even within the same discipline. This was evident in

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this study where the inclusion of several discipline groups to build knowledge or to make reasonable cost–benefit
found conflicting paradigms guiding care. This is not judgements.
unique to Australia or to neonatal jaundice management.
In a large Swedish university hospital study, existing power Strengths and limitations
relations impeded effective professional teamwork.39 Both strengths and limitations are present. Several
Awareness of the inter-­ relationships between profes- health disciplines across geographical and work settings
sions, particularly when professional knowledge and in Australia were involved, providing a broad range of
work overlap, needs consideration in planning care and perspectives. Limitations include the extended period for
in developing guidelines. Interprofessional relationship data collection and analysis, which were driven by practical
issues, characterised by competition and conflict, seem constraints. The study was conducted over a staggered
central to professional identity.40 They need ongoing period, somewhat mirroring the process of guideline
attention. Interdependent professions can experience development. While not ideal, delay was unavoidable
constant conflict when continuous engagement related and allowed opportunity to confirm that little change in
to expert labour and jurisdictional disputes exists. Reso- neonatal jaundice management and clinical guidelines
lution, when it does occur, tends to be temporary and had occurred.17 The slow pace of analysis also gave time
followed by renewed disturbances.40 Interprofessional for reflection. The insider–outsider status of the primary
collaboration and the need for synergising professional researcher offered potential to interpret data in different
roles have been the concern of numerous studies.41 42 ways, making reflexivity critical and the field journal
Contextual factors and the autonomous and collaborative invaluable. The decision not to record interviews may
aspects of professional roles need to be considered. be viewed by some as a limitation but also encouraged
Gaps in neonatal jaundice knowledge were acknowl- participation, and all scripts were verified by interviewees.
edged in this study and in other studies and other coun- Interview scripts written directly after interviews have
tries. For example, in the USA, a cross-­sectional study of been shown to have similar quality to audio-­ recorded
paediatricians43 found significant uncertainty in relation transcripts.27 Despite its limitations, this paper presents
to identifying risk factors and using diagnostic approaches the most contemporary views of health professionals on
to manage neonatal jaundice. Congruent findings were how neonatal jaundice is managed in Australia.47
also found in a root cause analysis of 125 full-­term infants
with acute bilirubin encephalopathy voluntarily reported
to the Pilot USA Kernicterus Registry (1992–2004), CONCLUSION
where the progression to hazardous bilirubin levels was Multiple barriers to the provision of evidence-­based care
attributed to the inability of multiple health professionals related to neonatal jaundice management are experi-
across multiple sites to identify at-­risk infants or to manage enced by healthcare professionals in Australia. Clinical
severe hyperbilirubinaemia in a timely way.44 guidelines are not sufficient to support health profes-
An important finding of this study, unrelated to sionals deliver evidence-­ based care in the complex
previous studies in this area, relates to particular chal- contexts in which they work. Implementation strategies
lenges when adverse events are rare. Low case frequency for evidence-­based practice need to take account of health
may give clinicians false confidence that processes are professionals’ experiences and the challenges they face.
working. The incidence of severe neonatal outcomes Implementation strategies for neonatal jaundice manage-
arising from extreme neonatal hyperbilirubinaemia in ment need to consider how to raise awareness of the
Australia, when reported by clinicians, is around 10 per importance of avoiding severe adverse outcomes; despite
100 000 live births.6 While international comparisons are their rarity, the consequences are devastating. Addressing
difficult due to definitional differences, including serum issues that lead to disjointed care or poor knowledge of
cut-­
off levels, gestational age ranges and methods of neonatal jaundice is essential. Gaps in evidence-­ based
data collection, a Swedish study that identified cases of practice arise even when clinical guidelines exist and
kernicterus (bilirubin encephalopathy) through medical health professionals do not know how to address them.
records found almost half were most likely avoidable.
These were attributed to failure to adhere to best prac- Contributors CT conceived the study design and collected all data. CT wrote the
main manuscript text with support from DH. Both authors reviewed the manuscript.
tice, including untimely or no bilirubin screening, misin- CT is responsible for the overall content as the guarantor.
terpretation of bilirubin levels, and delayed or failure
Funding The authors have not declared a specific grant for this research from any
to initiate treatment.45 That some health professionals funding agency in the public, commercial or not-­for-­profit sectors.
in this study dismissed the possibility of severe adverse Competing interests None declared.
outcomes in Australia is concerning, particularly as lack
Patient and public involvement Patients and/or the public were not involved in
of awareness of the possibility of poor outcomes can the design, or conduct, or reporting, or dissemination plans of this research.
be the most significant barrier to improving patient
Patient consent for publication Not applicable.
safety.46 The absence of ongoing reporting of all adverse
Ethics approval This study involves human participants and was approved by La
neonatal outcomes, including severe neonatal jaundice, Trobe University Faculty of Health Sciences Human Ethics Committee (FHEC11/47),
appears to be critical. In the absence of adverse outcome Tasmania Health and Medical Research Committee, University of Tasmania (UTAS
data, there is little opportunity for health professionals H0012686), Queensland Health (HREC 12/GCH/140), Gold Coast Hospital and Health

Trasancos C, Horey D. BMJ Open 2024;14:e075896. doi:10.1136/bmjopen-2023-075896 7

 Open access

BMJ Open: first published as 10.1136/bmjopen-2023-075896 on 13 February 2024. Downloaded from http://bmjopen.bmj.com/ on February 15, 2024 by guest. Protected by copyright.
Service, NSW Health (1210-­378MNR/12/HAWKE/368), and Northern Sydney Local for the implementation of clinical practice guidelines: a systematic
Health District (lead LHD) (1305-­184M). Participation was voluntary and informed metareview. Health Res Policy Syst 2020;18:74.
consent was required prior to all interviews. No one withdrew. 17 Trasancos C. An exploratory study of the management of neonatal
jaundice in Australia [Thesis]. Melbourne, Australia, La Trobe
Provenance and peer review Not commissioned; externally peer reviewed. University, 2022
18 National Collaborating Centre for Women’s and Children’s Health.
Data availability statement Data are available upon reasonable request. All
Neonatal jaundice. Clinical Guideline; 2010. Available: https://www.​
data relevant to the study are included in the article or uploaded as supplemental nice.org.uk/guidance/cg98 [Accessed 31 Oct 2023].
information. Deidentified interview scripts are available upon reasonable 19 American Academy of Pediatrics Subcommittee on
request from a controlled access repository (Figshare: https://figshare.com/s/​ Hyperbilirubinemia. Clinical practice guideline: management of
8cd109d0a2b49ac8071c). Reuse is permitted when there is a published protocol or hyperbilirubinemia in the newborn infant 35 or more weeks of
detailed plan for analysis. gestation[Revised in 2022: Clinical Practice Guideline Revision:
Management of Hyperbilirubinemia in the Newborn Infant 35 or
Supplemental material This content has been supplied by the author(s). It has More Weeks of Gestation Pediatrics. 2022;150 (3): e2022058859].
not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been Pediatrics 2004;114:297–316.
peer-­reviewed. Any opinions or recommendations discussed are solely those 20 Maisels MJ, Bhutani VK, Bogen D, et al. Hyperbilirubinemia in
of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and the newborn infant > or =35 weeks’ gestation: an update with
responsibility arising from any reliance placed on the content. Where the content clarifications. Pediatrics 2009;124:1193–8.
includes any translated material, BMJ does not warrant the accuracy and reliability 21 Kim H, Sefcik JS, Bradway C. Characteristics of qualitative
of the translations (including but not limited to local regulations, clinical guidelines, descriptive studies: a systematic review. Res Nurs Health
2017;40:23–42.
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22 Sandelowski M. Whatever happened to qualitative description? Res
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Creative Commons Attribution Non Commercial (CC BY-­NC 4.0) license, which Kuhn T, Keyton J, et al., eds. The International Encyclopedia of
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permits others to distribute, remix, adapt, build upon this work non-­commercially,
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