The participation of young adults with mild intellectual disabilities and cerebral palsy in the decision to receive botox treatment for muscle spasticity.

Abstract

Background: While a large proportion of youth with intellectual disabilities (ID) live with chronic health conditions, it is unlikely that these individuals will be prepared to participate in health-related decisions. Purpose: This study examined the phenomenon of health-related decision-making among young adults with cerebral palsy and mild or borderline ID. The specific clinical context for the study was the decision to receive intramuscular injections of botulinum toxin type A (Botox) for skeletal muscle spasticity. Methods: A multicase methodology was used, based on a narrative approach. Data were gathered during semi-structured interviews with young adults and their parent guardians. Participants described their experiences related to the decision-making process. Results: Preliminary findings included a conceptual framework of the decision-making process based on case reports and case narratives. The four main concepts of the conceptual framework were goals, information, relationships, and deliberation. Thematic analysis was conducted using cross-case comparisons; data from field notes were also integrated. The main themes were agency; communication and cognition; information gathered independently; and relationships. The themes were further developed by synthesizing information from current literature. Conclusions: Participants described varying degrees of explicit participation of the young adult making the decision. Communication patterns were a significant factor in making decisions. Youth were supported in various ways with communication and deliberation. Participants considered peers as an important source of information about Botox. The young adults, their parents and their physicians weren’t the only people involved in the decision-making process.