The New Frontier of Adult Neurodevelopmental Care: Individual and Caregiver Values

Abstract

Background and objectives: There are few specialists that serve adults with neurodevelopmental disabilities (NDD), and most adults with NDD receive care from providers without specialty training in NDD. Care for this population is highly variable, and patient and caregiver priorities in this age group are not well known. We aimed to explore individual and caregiver values around adult neurodevelopmental care.

Methods: In this qualitative study, a qualitative analyst conducted 22 semistructured virtual interviews from September 2021 to February 2022 with randomly selected adults with NDD and/or their caregivers. Each individual with NDD had at least one appointment in the adult NDD clinic, which started in October 2020. Interviews were recorded and professionally transcribed. An inductive codebook was developed and reconciled through an iterative process; transcripts were coded in Atlas.ti with 20% double-coding. Major themes were developed through team discussion.

Results: Most interviewees were caregivers of patients with NDD (12); 9 interviews were with patient/caregiver dyads; 1 interview was with a patient alone. Three main themes emerged from the interviews. (1) Value in providers who are curious, engaged, and knowledgeable about NDD-related conditions, which individuals and caregivers referred to as "Unicorn Providers." (2) Value in a connected and coordinated web of care. (3) Value in comfortable and adaptable clinic spaces. They value clinical environments that foster patient success during visits.

Discussion: The need for adult neurodevelopmental care is growing as more individuals with NDD are living into adulthood. Better understanding of patient and caregiver values can help shape this emerging field to meet the needs of this unique, often overlooked and underserved, population.