Put yourselves for a moment in the shoes of a sonographer, conducting an ultrasound scan on a pregnant woman. Perhaps her partner is there, and they are excited, smiling, and asking you the gender of their baby. Suddenly you notice an unexpected finding on the baby’s left arm; you can’t see his hand on this side. Perhaps it’s tucked just out of sight, but you can’t be certain. He may be missing his hand. What would you do next? What should you say?
Make no assumptions
In the past this question has been answered too quickly. It has been assumed that the answer can be drawn from either 1) the sonographer’s personal experiences at work or 2) from research into how to ‘break bad news’ in other areas of healthcare, like cancer services. Both these assumptions are seriously flawed.
Parents’ reactions may be misleading
The first assumption is flawed because parents do not initially react based on how well the sonographer communicates this information. Instead, after hearing this news parents go into shock (Mckechnie et al., 2016). This means that the healthcare professional may do a great job of communicating the news and find the parents are extremely upset. On the other hand, they may do a terrible job and find the parents seem quiet and calm. The bottom line is that parents’ reactions at the time of the event are not a good indicator of a healthcare professional’s communication skills.
This experience is unique
The second assumption is flawed because delivering this news is different to delivering news in any other area of healthcare. In other areas of healthcare, the focus has been on ‘bad news’ (Baile et al., 2000), and this is not bad news, it is simply unexpected news. It also comes without warning; the parents are watching the sonographer’s face as they do the scan, and know as soon as something is out of the ordinary. Guidelines for delivering news in other areas of healthcare are not appropriate to apply in this situation.
It won’t come as a surprise then that in a survey we conducted in 2014, parents reported very low satisfaction with their experience of being told their baby had a limb difference (Johnson et al., 2016). To explore this area some more, we recently interviewed 20 parents (nine fathers, 11 mothers) who had had a baby with a limb difference in the UK in the last five years (for the full paper see HERE). Eight of these parents were told the news at an ultrasound scan, but 12 didn’t know about their baby’s limb difference until they were born. We asked these parents about their experiences of being told the news of their baby’s limb difference and how they thought this could have been improved.
What we found
Parents were keen to take part in the study. They had a range of experiences and while some wanted to participate because they felt things needed to improve, others were grateful for the excellent healthcare they had received at this time. However, all parents felt this was a defining moment in their lives: whether things had been done well or not well mattered. Receiving this news was the start of a journey into the unknown, and good experiences at the start had a lasting influence on how this unfolded.
In line with previous studies, all parents were shocked to learn their baby had a limb difference, but parents were less shocked when the limb difference was found on an ultrasound scan and they had time to process this news before their baby was born. They were also less shocked and less anxious when they had a friend or family member with a disability.
What parents want
Information about support organisations: Organisations such as Reach helped parents to find the right information and provided a support network. However, most parents only discovered these organisations through extensive online research and would have preferred to be told about these right away by the healthcare professional who told them the news.
Information about limb differences: While most parents wanted as much information as soon as possible about the limb difference, some said they felt overwhelmed and preferred to process the news at a slower pace. All of these parents said that being given written information would have been helpful.
Good communication skills: Parents wanted clear but sensitive communication from their care providers. In contrast to research in other healthcare settings, parents preferred it when healthcare professionals described the limb difference in a no-frills way, for example, “I cannot see your baby’s arm below their elbow on the left side”. Parents didn’t like it when healthcare professionals led into this with a warning sentence, like “I have found something wrong” or “there is a problem”. When this was said, it needlessly increased parents’ anxiety.
A care plan: Most parents felt frustrated about delays in their child’s health care; they described accessing appropriate care as a ‘battle’ and said they would have liked to know what their plan of care was going to be immediately. Only a few parents felt the plan of care they received had been good enough.
Some final pointers for healthcare professionals
If you are a healthcare professional, some final recommendations came out of our research:
Parents don’t like strangers appearing in the scan room: Some parents described being asked to go for a walk and returning to find a second sonographer in the scan room. For one parent, this was enough to trigger floods of tears, as she knew it meant something was wrong. Parents preferred it when they were warned in advance that a second sonographer was going to be invited in, and were given an honest rationale for this (e.g., “I cannot see your baby’s arm, so I need to find someone who is more experienced”).
Show that you care: Several parents said that they know delivering difficult news is hard for healthcare professionals and it is challenging to get this ‘right’. However, if they thought the healthcare professional cared, they tended to view them positively and be forgiving in any missteps in wording or communication.
Don’t panic: Parents appreciated it when healthcare professionals were confident and professional; when instead healthcare professionals communicated their personal shock at the dysmelia diagnosis (e.g., “this has never happened before”), parents felt more anxious and alone in their situation.
Insensitive questions are as bad as insensitive statements: When parents discovered the limb difference at birth, some reported being quickly asked insensitive questions. For example, one parent was being stitched up from her caesarean section when her doctor asked her what drugs/medication she had taken during pregnancy. The implication of questions such as these is that the parent has caused the limb difference by something they have done. Parents who received these types of questions too quickly found they had a strong and lasting negative impact on them.
Baile, W. F., Buckman, R., Lenzi, R., Glober, G., Beale, E. A., & Kudelka, A. P. (2000). SPIKES—A six-step protocol for delivering bad news: Application to the patient with cancer. The Oncologist, 5, 302-311. doi:10.1634/theoncologist.5-4-302
Johnson, J., Adams-Spink, G., Arndt, T., Wijeratne, D., Heyhoe, J., Taylor, P. J. (2016). Providing family-centred care for rare diseases in maternity services: Parent satisfaction and preferences when dysmelia is identified. Women and Birth, 29, e99-e104.
McKechnie, A. C., Pridham, K., & Tluczek, A. (2016). Walking the “emotional tightrope” from pregnancy to parenthood: Understanding parental motivation to manage health care and distress after a fetal diagnosis of complex congenital heart disease. Journal of Family Nursing, 22, 74-107. doi:10.1177/1074840715616603
The reference for the paper described in this blog is: Johnson J., Johnson, O., Heyhoe, J., Fielder, C., & Dunning, A. (2018). Parent experiences and preferences when dysemlia is identified during the prenatal and perinatal periods: A qualitative study into family nursing care for rare diseases. Journal of Family Nursing. In press. It can be viewed on the journal website HERE.