2011 Symposium Program - College of Health - University of Utah

Through the Eyes of the Client: Community Dwelling Adults’ Perception of the
Representation of the MacDQoL to Their Lived Experience
Researchers: Miller, A.; Mitchell, R.
Committee: Wright, J.; Mitchell, K.; Kleinschmidt, J.
Introduction
Macular degeneration (MD) is the most common cause of impaired vision for individuals in
the United States. Past research has indicated that this condition significantly impacts
quality of life (QoL). Understanding how MD affects QoL is important to health
professionals for intervention development and measuring treatment outcomes. The
objectives of this research are to first, ascertain how well research participants feel the
Macular Disease Dependent Quality of Life (MacDQoL) questionnaire reflects their lived
experience, and secondly, how MD affects QoL.
Methods
Nineteen adults with MD (mean age 82.5; 63.2% living alone; 84.2% female) were involved
in this study. Data was collected using semi-structured interviews and multiple measures.
The SK Read, an assessment of reading performance of individuals with scotomas or
visual field deficits, was used to identify the participant’s functional level of visual
impairment. The MacDQoL was then administered followed by five semi-structured
interview questions to ascertain how well participants felt the MacDQoL reflects their lived
experience. Interviews were audio recorded and transcribed. Major themes identified
using MacDQoL questions and participant responses were analyzed and compared with
previous research to identify potential areas for improvement. Quantitative data from the
MacDQoL, SK Read, and demographics were analyzed using SPSS software. To identify
the effects of MD on QoL, responses were thematically analyzed. Themes were
triangulated between researchers and compared to previous research.
Results
Thematic comparisons to previous research and participant’s responses indicate that
participants felt the MacDQoL is an adequate representation of how MD affects their daily
lives. Identified themes include: social impacts, personal affairs, getting out and doing, and
internal perceptions. Multiple similarities were found between these themes and
constructs identified in recent research. Relationships were identified between the SK
Read and MacDQoL scores. In addition to the themes identified above, overarching
themes of loss and frustration emerged to expand the researchers understanding of how
MD affects QoL.
Conclusion
This study confirms that the MacDQoL is a useful tool to ascertain how MD impacts an
individual’s QoL. The themes that emerged from this study provide a richer understanding
of the impact of MD. This information is useful to health professionals as they strive to
understand and help improve the lives of individuals living with this disease.
Key words
macular degeneration, low vision, quality of life
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