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.
University of Minnesota Ph.D. dissertation. May 2010. Major: Nursing. Advisor: Barbara Leonard, PhD, RN. 1 computer file (PDF); vii, 158 pages, appendices A-D.
Belew, John Leland.
The participation of young adults with mild intellectual disabilities and cerebral palsy in the decision to receive botox treatment for muscle spasticity..
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