Exploring patient involvement in healthcare decision making across different education and functional health literacy groups

Smith, Sian K., Dixon, Ann, Trevena, Lyndal, Nutbeam, Donald and McCaffery, Kirsten J. (2009) Exploring patient involvement in healthcare decision making across different education and functional health literacy groups. Social Science & Medicine, 69 (12), 1805-1812. (doi:10.1016/j.socscimed.2009.09.056).

Abstract

Education and health literacy potentially limit a person's ability to
be involved in decisions about their health. Few studies, however, have
explored understandings and experiences of involvement in decision
making among patients varying in education and health literacy. This
paper reports on a qualitative interview study of 73 men and women
living in Sydney, Australia, with varying education and functional
health literacy levels. Participants were recruited from a community
sample with lower educational attainment, plus an educated sample of
University of Sydney alumni. The transcripts were analysed using the
'Framework' approach, a matrix-based method of thematic analysis. We
found that participants with different education conceptualised their
involvement in decision making in diverse ways. Participants with
higher education appeared to conceive their involvement as sharing the
responsibility with the doctor throughout the decision-making process.
This entailed verifying the credibility of the information and
exploring options beyond those presented in the consultation. They also
viewed themselves as helping others in their health decisions and
acting as information resources. In contrast, participants with lower
education appeared to conceive their involvement in terms of consenting
to an option recommended by the doctor, and having responsibility for
the ultimate decision, to agree or disagree with the recommendation.
They also described how relatives and friends sought information on
their behalf and played a key role in their decisions. Both education
groups described how aspects of the patient-practitioner relationship
(e.g. continuity, negotiation, trust) and the practitioner's
interpersonal communication skills influenced their involvement. Health
information served a variety of needs for all groups (e.g. supporting
psychosocial, practical and decision support needs). These findings
have practical implications for how to involve patients with different
education and literacy levels in decision making, and highlight the
important role of the patient-practitioner relationship in the process
of decision making.

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