Professional boundaries

Gaps arising from issues related to professional boundaries were revealed across different professional groups and included limitations in knowledge and experience. Relationships and communication appeared to be affected. Knowledge gaps and lack of experience meant adverse outcomes were possible. For example, several doctors linked lack of knowledge in junior doctors as a risk, for example:

…Trying to get exposure to cover all aspects of neonatal care has been an ongoing issue. Learning about neonatal jaundice is not in any formal way mandated in training of general paediatricians. (neonatologist_C)

Midwives, including educators and those involved in policy development, also linked lack of adequate knowledge and clinical experience to poorer outcomes. One midwife summed up the situation this way:

…. [Neonatal jaundice] is probably not managed that well…. there is the potential for it to get missed….there is no surveillance strategy…. there is a deficit in the learning…. junior doctors lack experience; they are not good at putting the picture together; they may not even have seen the baby….midwives are generally not able to sign pathology slips….If the baby is starting to get jaundice within 24 hours – will call the paediatrician to look at the baby; we monitor – 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 sees that the baby is bright yellow…Parents may think the baby has olive skin. Parents are not trained to look and assess…. Guidelines and protocols are only looked at when an issue comes up. (midwife_C)

Professional boundaries rising from poor relationships and poor communication created potential gaps in care, particularly when role conflict existed. The most common example was differences between medical and midwifery paradigms, sometimes described as interventionist and non-interventionist approaches. The impact was evident in descriptions of assessment approaches. Midwives referred to using ‘intuition’ or ‘instinct’ as part of their professional assessment. In contrast, medical practitioners were likely to report erring on the side of caution for both testing and treating, ‘just in case’. As one said:

…we have to do that for fear of kernicterus. At a serum bilirubin level of 310, the baby receives treatment. It is not necessarily the right thing to do but don’t want to miss pathological jaundice. (paediatrician_C)

Tension between different professional relationships was evident in several interviews, such as between pathology personnel and clinical staff:

There have been specific problems measuring bilirubin for a long time; trying to get it right; there is a combination of things; measurement, early discharge, lack of knowledge, lab measuring delay, haemolysed samples. Lab error is unlikely; if there is a mistake it is repeated. (pathologist_C)

Professional boundaries affecting care were also reported within specialty groups in the same discipline, for example:

There are conflicting views between the medical consultant and the paediatrician… for example in a baby with high SBR [serum bilirubin] the medical consultant will say put the baby under two lights; the paediatrician will visit later and say ‘no just use one light’. (midwife_A)

Professional boundaries affecting communication were most evident in accounts of absent feedback when neonatal jaundice was suspected, affecting confidence among less experienced professionals when potential cases were suspected.

…if you are seeing newborn babies all the time, your skills are better, your assessment skills are better, when compared to midwives who only occasionally work with babies; you have a different perspective. There is a potential for over-reacting and under-reacting. I tend to overreact. (educator, maternal and child health/midwife_C)

Blindness to possibility of adverse outcomes

Several interviewees could not believe that adverse outcomes from neonatal jaundice occurred in Australia. Two participants were openly cynical about the possibility of kernicterus diagnoses in Australia, including one paediatrician, who despite reporting experience with many jaundiced infants, had had no direct experience of adverse outcomes, so felt one was unlikely. Similarly, one midwife explicitly questioned whether a kernicterus diagnosis was possible in Australia. Several others commented on the rarity of severe neonatal jaundice in Australia, also raising doubts about whether serious adverse outcomes occur.

Knowledge of adverse outcomes associated with neonatal jaundice was not considered important in Australian conditions according to some interviewees. When talking about their clinical education, the term ‘kernicterus’ was recalled by some midwives as a ‘scary thing’ or reportedly mentioned ‘in passing’. Despite several comments about higher proportions of Asian women readmitted with jaundiced babies, only five participants (two paediatricians, a neonatologist, midwife and neonatal nursing educator) considered the needs of genetic diversity and ongoing population changes.

Very few participants recognised the increased risk for First Nation Australians. One paediatrician who worked in an area with a higher proportion of First Nation residents and those with Asian backgrounds questioned the association with skin colour, commenting:

One cannot make assumptions about ethnic heritage; there has been much exchange of genetic material over the years. Pigmentation is not fully developed in the first few weeks of life. (paediatrician_A)

Competing professional development priorities

Almost all health professionals acknowledged difficulties in keeping abreast of research evidence; some felt individuals were responsible to keep up to date, but most relied on others to make research information available.

I don’t go looking for [information, literature]. (midwife_B)

Participants who felt unable to keep up with research also talked about other priorities, lack of access to resources or the size of the challenge:

Keeping up to date with research is difficult. A significant number of midwives don’t do it well. If outside the system, it is difficult, if not enrolled in University. How many journals can you subscribe to? It costs money. You rely on Google. You give up. Access is difficult. Enrolling in University costs money and you need time. (midwifery educator/consultant_C)

Most participants agreed that neonatal jaundice was one of many conditions that health professionals need to know about. Several acknowledged lack of understanding of normal physiology or differences between physiological and pathological jaundice. Overall, professional development opportunities on neonatal jaundice care were limited.

Unintended consequences

Systemic issues within service delivery and organisations revealed unintended consequences, such as the absence of mechanisms to document adverse effects. Some participants pointed out that without such information, measuring impact is difficult. Participants, cognisant of potential consequences, remarked:

One may not know the outcome of severe neonatal jaundice for years. Hearing loss may be evident within hours. (pathologist_D&F)

Common reasons for readmission are G6PD, ABO incompatibility, dehydration, bruising. There is less awareness around these. The number of babies readmitted is not coded as separate. It is not easy to get this information. (neonatologist_E)

Many interviewees commented on the potential cost of testing, which was commonly considered in terms of overtesting and overtreatment. One participant considered the prevention of severe neonatal jaundice attributed to ABO incompatibility and said:

You would need to test every parent and child. Test fathers, test cord blood. Per baby it would be $150 extra assuming 200 000 babies born per year—there would not be much benefit. (paediatrician_C)

In contrast, another participant felt it would be cheaper to test every baby ‘as then the health service cannot be sued….’. Several doctors and a pathologist raised the potential costs associated with one missed case.

Early discharge of mothers and babies was commonly identified as a potential problem for neonatal jaundice identification. All participants working in hospital postnatal wards identified early discharge as a barrier to developing better clinical knowledge:

There is a concern about early discharge. It is a problem in Australia. It seems greater [than in other countries]. Our women get kicked out. Monitoring is variable across Australia. What is the monitoring process? (neonatologist_C)

Issues arising from early discharge included variability in post-discharge care, where neonatal jaundice management was variously described as ‘haphazard’ or dependent on ‘competing demands’ with ‘no dedicated surveillance’ measures in place. While one neonatologist described a robust community system, numerous others, including other neonatologists, did not concur:

Need better way of streamlining taking serum bilirubin levels at home. Would need to report to the registrar. All midwives at home should perhaps carry a bilirubinometer. Institutions vary—each hospital will have its own policies. …. Need resources for daily home visits for a minimum of 3 days until the maternal and child health nurse kicks in; need lactation support. (neonatologist_C)

Contributing to uncertainty about patient care trajectories was growing reliance on a casualised workforce, particularly in midwifery, which was seen to affect skill and knowledge development:

Midwives, we are reliant on them for recognising and assessing; they are a mixed bunch; quite a number do shifts in post-natal ward. They are semi-deskilling themselves. Not keeping up to date. They occasionally take a while to properly communicate regarding jaundiced cases. (paediatrician_C)

Poor knowledge of neonatal jaundice among health professionals also affects communication with parents about the condition. Some participants pointed out that no specific information for parents existed while others were concerned not to overwhelm parents with more information than needed.

Improvements in education and training

Almost all participants expressed needs for better education, particularly for midwives and junior doctors and parents. Several participants suggested that links between curriculum, guidelines and clinical practice were missing:

There was a little bit of education around neonatal jaundice during medical training; not thorough; not much at all. It should be covered better especially for GP obstetricians. My general knowledge is not great about neonatal jaundice. There is a midwife educator… maybe should have a bigger role. This may include keeping in touch with current research publications; to let us know what is out there. (GP/obstetrician_C)

Guidelines were frequently portrayed as ineffective tools for evidence-based care. The development and update of clinical guidelines were described as time-consuming. Several participants reported that guidelines were not included in their professional training and were considered difficult to navigate and not specific enough to be useful.

Guidelines. Don’t use them, don’t look at these. (midwifery educator_C)

We need concrete guidelines around when to take SBR [serum bilirubin], for example if the jaundice is below the belly button, you need to do a blood test. Need to take way subjectivity. (educator/maternal and child health coordinator/midwife_C)

Standardised policies and protocols

Most participants described policies and processes relating to neonatal jaundice management as variable and viewed as significant barriers to achieving necessary changes. Underpinning concerns were inconsistent or confusing language. Several participants pointed to examples of how different types of jaundice were described and assessed. For example, ‘clinical jaundice’ was used to describe jaundice requiring a blood test and ‘jaundice’ used when ‘severe jaundice’ meant. Conflation created confusion—and, in the views of some participants—diminished the importance of severe bilirubin among clinicians.

While calls for consistency in neonatal jaundice management came from across discipline areas, all conceded that reaching agreement was difficult. Some health professionals felt there was already multidisciplinary collaboration in policy and guideline development, while others believed such collaboration to be missing. Challenges included a ‘them-and-us’ mindset, including between tertiary centres and smaller services, and even siloed approaches within tertiary centres.

The wordiness of guidelines was frequently criticised. Poor accessibility exacerbated dissatisfaction. Participants using guideline websites found navigation difficult. The majority felt current guidelines needed to be reviewed, updated, or in some views, developed. Some called for more prescriptive guidelines ‘to rule out grey areas’.

Guidelines—they are not easy to find; website is not intuitive, guidelines are under ‘metabolic’ (section). At 03:00 in the morning, when everyone is tired, (guidelines are) hard to find. On-line—so many guidelines. Use most recent but many are out of date. (paediatrician_A)