Conference this week will cover the topic of home oxygen monitors and SIDS. I still find this a hard conversation as it comes from a parent’s genuine fear of the worst possible outcome. It got me thinking, are there ways to approach this conversation to avoid alienating parents while still practicing evidence based medicine?
Some helpful insights can be gleaned from research with parents of new onset Type-1 diabetic children – a group of parents often plagued by worry (justifiably). Jaser et. al. conducted focus groups and developed a tool for talking with these families using a cognitive behavioral (CBT) approach to counseling. Cognitive restructuring, a type of CBT, is an approach to re-framing negative thoughts in a way that promotes agency and can reduce caregiver feelings of despair and / or helplessness. The authors propose this as a useful way to approach discussions for T1DM and I think one that provides a helpful frame for discussion about home O2 monitoring.
Spirito et. al. have a nice mnemonic for how to approach cognitive restructuring – “ABCDE”. In their paper, they explain the approach with an adolescent with depression.
The first step in changing negative thought is to identify the A, activating event, that is associated with negative thoughts. In teaching the ABCDE method, the letter C (Consequences) is described next to the adolescent as the Consequences or Feelings related to the Activating Event. Next, the adolescent is taught that the B of the ABCDE method stands for Beliefs, and that it is one’s beliefs that lead to negative affect. The adolescent is then taught that, in order to feel better, he/she must confront these negative beliefs or Dispute them. […] The last step begins with an E and stands for Effect. Effecting something is presented as trying to change something. Adolescents are taught that they may not be able to change the fact that a negative activating event happened but they can change negative beliefs and feelings surrounding the event.
So how does this apply to home monitoring? Here is a rough example for an infant with likely reflux and a history of ALTE / BRUE:
Activating event + Consequence: Baby will vomit and breath-hold (and possibly) cause serious harm. Parents can’t bear the thought of this happening while they are sleeping.
Belief: O2 monitor would catch this event and allow life saving intervention
Dispute: Reality of monitors = sleep deprivation, false alarms, and unnecessary intervention.
Effect: While we likely can’t change spitting up, we can talk about how to make it less frightening by discussing the mechanics, realizing how common it is, and discussing how brief breath holding is actually protective for the infant to prevent aspiration. Lets talk about some other ways to help keep your baby safe while sleeping that we know are effective…
I am certainly not suggesting you should embark on guiding a family through an entire CBT session, however I really like this way of framing a discussion for a couple reasons.
1) It acknowledges a family’s fear – as a parent, it can be hard to imagine that anyone else worries about your kids as much as you do. This is probably accurate, but you can still ask about it and notice the fear exists. Otherwise you risk being seen as brushing off a legitimate concern or falling into the trap of – “we see this all the time and kids end up fine” which may be true but is a quite ineffective approach for many conversations.
2) It allows you to confront the realities of an intervention that may seem, on the surface, to be logical and straightforward.
3) You give the family a sense of agency, so they feel like there are things they can do, other than just wait around and hope the worst doesn’t happen.
What do you think? I’d love to hear your pearls for approaching these conversations.
Jaser SS, Lord JH, Savin K, Gruhn M, Rumburg T. Developing and Testing an Intervention to Reduce Distress in Mothers of Adolescents with Type 1 Diabetes. Clin Pract Pediatr Psychol. 2018;6(1):19–30. doi:10.1037/cpp0000220
Spirito A, Esposito-Smythers C, Wolff J, Uhl K. Cognitive-behavioral therapy for adolescent depression and suicidality. Child Adolesc Psychiatr Clin N Am. 2011;20(2):191–204. doi:10.1016/j.chc.2011.01.012