Adult Preemie Advocacy Network
The Adult Preemie Advocacy Network (APAN) was set up in January 2021. It became registered as a CIC in 2023 by a group of adults who were born prematurely who wanted to share their experiences and discuss all issues relating to the long-term impact of premature birth. APAN reaches people across the globe including but not limited to United States of America, Canada and Australia.
This group aims to provide a global network of peer support and advocacy through their website and social media channels. They acknowledge that each individuals’ experiences are unique and valid and combine research with lived experiences to promote awareness across the globe.
Premature birth is globally defined as the birth of a baby prior to 37 weeks gestation. It can lead to various long-term complications and challenges for physical, cognitive and social-emotional development (Ohuma et al, 2010). Medical advances in neonatal care have advanced majorly in recent decades but acknowledgement of the long-term consequences of this for people hasn’t matched the advancement.
Early Intervention encompasses a range of services designed to provide therapeutic interventions to children and their families to support and promote optimal development for infants, following premature birth and other developmental reasons. Allen at al (2011) describes early intervention as “enables every infant, child and young person to acquire the social and emotional foundations upon which our success as human beings depends”.
I was invited to speak at their first virtual conference on the 24th February 2024. My topic looked at the brain, the in utero development of the nervous system and I discussed some of the research in relation to the multifactorial reasons some adults have certain challenges in their life following their premature birth.
Following this topic, a clinical psychologist Davy Evans who works in the West Midlands in a NICU was introduced. He discussed some of the evidence base around the short, medium and long-term consequences of prematurity in relation to mental health and also spoke about “the storied life” and the window of tolerance. Both these topics seemed to build on each other and open avenues for further discussions and education to anyone working in healthcare or living with consequences of prematurity.
If you want to get in touch with Davy, his details are as follows: therelationalpractice@gmail.com and @DrDavyEvans.
I really enjoyed being a part of this conference to discuss a topic I don’t necessarily work with everyday. It has opened my eyes up to consider early childhood experiences when working with adults and consider the consequences of prematurity on daily functioning in relation to both physical, cognitive and mental health.
The recordings for our talks are unfortunately too large to include here but I have attached a link to the Adult Preemie Advocacy Group - please click the blog title, so go check it out!
It’s important to remember that every premature birth is very different, but groups like APAN and health professionals learning more about this topic, is raising awareness and increasing it’s profile overtime.
Some of the following links discuss and educate on premature birth and are raising the awareness of this important topic:
References:
Ohuma E, Moller A-B, Bradley E, et al. National, regional, and worldwide estimates of preterm birth in 2020, with trends from 2010: a systematic analysis. Lancet. 2023;402(10409):1261-1271. doi:10.1016/S0140-6736(23)00878-4.
Allen KL, Mountford VA, Elwyn R, Flynn M, Fursland A, Obeid N, Partida G, Richards K, Schmidt U, Serpell L, Silverstein S, Wade T. A framework for conceptualising early intervention for eating disorders. Eur Eat Disord Rev. 2023 Mar;31(2):320-334. doi: 10.1002/erv.2959. Epub 2022 Nov 25. PMID: 36426567; PMCID: PMC10100476.