Co-production of a conceptual theory of chronic pain development specific to young adults with developmental disabilities

The underlying mechanisms of the development, maintenance and interventions for pain within a population of people with developmental disabilities is poorly understood (Moore, 2024). Individual differences in pain interpretation and presentation should be considered when assessing pain, as well as the presence of pain (von Baeyer, 2006). However, a lack of theoretical exploration of the factors associated with pain experiences impedes pain measurement and intervention. Research has indicated that when pain related cognitions are measured in developmental disability populations, these measures may not be measuring the same thing as in non-disabled populations (Barney et al., 2020), perhaps due to the association between many of these measures of pain and neuropsychological performance (Legarreta et al., 2016). Gold standard interventions for pain employ cognitive behavioural therapy and at their core address the cognitions associated with the pain experience (Jensen et al., 2018). The role of cognitive behavioural therapy is to move the person’s thought processes away from focusing on wanting the pain to stop, and to refocus the behaviour of the person towards what they can do despite the pain (Jensen et al., 2018). However, little research has been conducted on pain related cognitions in those with developmental disabilities (Bogdanova et al., 2022), rather the focus has been on the functional capacity of the person with a developmental disability and pain (Moore, 2024; Noyek et al., 2024). Without an understanding of cognition around pain and other factors influencing pain in developmentally disabled populations there is a lack of evidence from which to design interventions for pain in this population (Barney et al., 2020; Bogdanova et al., 2022).

Previous research with young people without developmental disabilities indicated that family, social and psychological factors influenced pain development in later life (Nicholas et al., 2019; Raja et al., 2020; Stevens, 2021). However, these trajectories have not been comprehensively explored in young people with developmental disabilities (Bogdanova et al., 2022). Further, as pain in early life is predictive of pain in adulthood across multiple pain types, if not met with an appropriate early intervention (Palermo, 2020), failure to understand pain development in this population creates a research base that might be hindering development of comprehensive pain assessment tools and effective interventions, rather than improving pain for young people with developmental disabilities.