Purpose: To explore brachial plexus birth injury (BPBI)-affected adults' health-related quality of life (HRQoL) experiences informed by the theoretical framework of the International Classification of Functioning, Disability, and Health.
Methods: This study applied a qualitative collective case study design. Twelve participants who participated in a prior survey study were recruited using maximum variation sampling. One-on-one semi-structured interviews focused on gaining in-depth understanding of participants' experiences with HRQoL. Interviews were recorded verbatim and thematically analysed.
Results: We identified two themes. First, the theme biopsychosocial dimensions of the experience comprised the ways BPBI affects physical and emotional health and how BPBI is intertwined with affected individuals' identities, activities/participation, and social environments. Second, the theme lifelong and variable experience encompassed how BPBI is a chronic condition that changes over time and varies among affected individuals. The cross-case analysis derived a conceptual model of BPBI HRQoL to describe the BPBI experience through the lifespan. In this model, multiple dimensions of BPBI HRQoL expand through the lifespan while BPBI-specific health resources' availability contract.
Conclusions: By providing insight into the many ways that BPBI affects and is affected by an individual's functioning and personal, social, and healthcare environmental factors, these findings underscore lifelong individualized care for BPBI-affected persons is needed.
Keywords: Brachial plexus birth injury; adults; disability and health (ICF); health-related quality of life; international classification of functioning.