How can we support parents with babies who have congenital abnormalities? by Lauren Philp https://padlet.com/lauren2philp/hhvhmbyfk9kpfish Find and share resources or thoughts with the group en-us 2020-04-20 12:07:01 UTC 2024-11-25 03:30:52 UTC hello@padlet.com Make sure the parents are kept informed where and as often as we can. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/519964951 2020-04-21 11:30:21 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/519964951 Give parents access to emotional support https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/519966516 2020-04-21 11:31:13 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/519966516 Give them time to understand what is happening and let them ask questions. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/519969361 2020-04-21 11:32:48 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/519969361 Do not apologise and presume diagnosis is negative e.g. Down Syndrome. Each family is different and will react slightly differently. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/520134709 2020-04-21 12:52:51 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/520134709 Use eye contact and direct language. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/520138461 2020-04-21 12:54:25 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/520138461 Do not categorise, "your baby will do this at this time," each baby is individual and will have different milestones. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/520139392 2020-04-21 12:54:48 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/520139392 Ensure MDT work together seamlessly to enable parents to have access to the same healthcare professionals where their history is well known and does not have to be repeated. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/520218762 2020-04-21 13:25:15 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/520218762 Explaining things to parents in simple, non-clinical terms that are not too overwhelming for parents to understand. Encourage lots of question asking. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/520334229 2020-04-21 14:03:36 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/520334229 Encourage skin to skin if possible https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/520387611 2020-04-21 14:20:05 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/520387611 Signposting to great resources https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/521310506 Before/after surgery photographs may help some parents. CLAPA has good selection. ]]> 2020-04-21 20:02:50 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/521310506 Tour of hospital/NICU - explanation of what will happen during and after birth. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/521318741 2020-04-21 20:07:15 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/521318741 Advocate for women and their families. To go ahead with the birth of a baby that doctors have said will, 99% not survive the surgery needed. Or to terminate a pregnancy for the same reason. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/521382877 2020-04-21 20:42:40 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/521382877 For the diagnosis of single ventricle heart condition, from antenatal diagnosis through to support at home. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/521400316 2020-04-21 20:53:29 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/521400316 When communicating bad news, don't be non-commital / economical with the truth as it destroys trust between MW and mother/family https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/521525835 If you don't know something - say you don't know, but say you will find out / find someone who does know
people's perception of, as well as the level of distress they experience in relation to minor/severe malformation varies - don't assume parents will feel and respond the same way you would to a particular diagnosis

kindness & dignity always

self-care (MDT debriefs etc - helps staff process difficult situations which helps us become better practitioners)]]> 2020-04-21 22:25:13 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/521525835 Rainbow clinics https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522301585 In some trusts, "rainbow clinics" are provided for families who have previously experienced miscarriage/stillbirth. Some parents may feel worried that they will face the same complications as the last, and need reassurance, support and/or guidance.]]> 2020-04-22 08:23:16 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522301585 Discuss feeding options https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522366415 Different birth congenital abnormalities can have different effects on the baby's ability to breast feed. The parents may need support with the feeding options and services available. E,g, some babies may not be able to breastfeed straight away due to hypoxia however once the baby is stabilised breastfeeding would potentially be possible. ]]> 2020-04-22 08:49:27 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522366415 Ensure understanding and be non- judgmental of the parents decisions moving forward. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522411014 2020-04-22 09:07:02 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522411014 Try to achieve continuity of carer to parents of babies with congenital abnormalities. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522647006 2020-04-22 10:48:30 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522647006 Introduction of the MDT involved in the care to enable a rapport. Parents will be able to understand each persons role in their child's care. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522654077 2020-04-22 10:52:04 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522654077 Positive about Down syndrome https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522654501 a parent's perspective
https://positiveaboutdownsyndrome.co.uk

]]> 2020-04-22 10:52:19 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522654501 Allow your emotional side to be visible to families when receiving difficult news as it helps them to feel more connected and trust you in order to form a strong relationship. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522656750 2020-04-22 10:53:34 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522656750 Ensure that all information received is understood. https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522739434 If discussing with a woman and their family about a congenital abnormality ensure that the correct information materials are given as well as ensuring all information during verbal discussion is understood. For example, a good understanding of the abnormality as well as clearly outlining the future plan of care for mother and baby with further steps personalised to them.]]> 2020-04-22 11:39:19 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522739434 allow space for "normal" baby experiences (i.e skin to skin, family visits, feeding, ect.) if safe to do so, but don't push if the family isn't ready https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522755565 2020-04-22 11:48:24 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522755565 info & care should be tailored to the stage of the emotional process a family is at. E.g not overwhelming with too much in-depth information if in shock https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522815814 2020-04-22 12:19:25 UTC https://padlet.com/lauren2philp/hhvhmbyfk9kpfish/wish/522815814