Madelyn Iris, PhD

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Creating A LTC Resident Quality of Life
Measurement Instrument

• Madelyn Iris, PhD
• CJE SeniorLife
• With
• Noel DeBacker, MD, FACP, CMD
• Ron Benner, BSN, MBHA, RN, LNHA
• Jo Hammerman, LCSW

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Faculty Disclosures

• Dr. Iris has disclosed that she has no relevant
  financial relationship.
• Dr. DeBacker has disclosed that he has no
  relevant financial relationship.
• Mr. Benner has disclosed that he has no relevant
  financial relationship.
• Ms. Hammer has disclosed that he has no relevant
  financial relationship.

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Learning Objectives

• By the end of the session, participants will be
  able to
• Objective 1 Understand the goals of the research
• Objective 2 Describe concept mapping
• methodology for creating a quality of
• life measure for residents in long
• term care
• Objective 3 Describe the range of items elicited
• from participants

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Goals of the Research

• To gain an empirical understanding of individual
  and collective views of various stakeholders,
  i.e., those with a strong interest in seeing that
  LTC residents QoL is as positive as possible.
• To create a visual map of the domain of QoL, and
  identify key indicators that can be used to
  develop an emically based assessment
  instrument.

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Concept Mapping Methodology

• Step 1 Brain-storming
• Participants generate descriptive statements
  (i.e., items) that express their beliefs about
  what constitutes residents QoL. Focus Prompt
  is
• "One of the things we all want for ourselves and
  our loved ones is a good quality of life. 
  However, quality of life can mean different
  things to different people, depending upon their
  personal history, where they live, how healthy
  they are, and their age.  This is especially true
  for people living in a long term care residence.
  What we would like to do today is collect as many
  statements as we can that describe some aspect of
  quality of life for someone living in a long term
  care setting  What are the indicators that
  describe good quality of life for a person living
  in a long-term care residence? Please list all
  the elements of quality of life that should be
  present.

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Methods Cont.

• Step 2 Researchers compile non-redundant lists
  of items generated and enter these into the
  Concept Systems software, via the designated web
  site.
• Step 3 Sorting and Rating
• Pile sort methodology creates groupings of items
  that are similar to each other according to
  individual principles of likeness. Sorting
  results are recorded and constitute the raw data
  for subsequent analyses.
• Participants rate statements according to
  importance with regard to resident QoL, using a
  1-5 likert scale (1not important, 5very
  important).
• Participants can complete the sorting and rating
  exercises using pencil and paper.
• Step 4 From these data, concept maps are
  produced, using multidimensional scaling, and
  cluster analysis. Clusters show the various
  domains comprising the concept of resident QoL
• Maps display relationships among domains and
  importance ratings, using 3-dimensional
  representations.
• Step 5 Findings are reviewed with selected
  participants from the brain-storming groups who
  assist the project team with interpretation of
  the maps.

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Outcomes

• Empirical results will demonstrate which items
  are ranked as most important for assessing QoL of
  residents in LTC.
• Results will be used to
• Develop a questionnaire to assess resident QoL in
  LTC
• Enhance staff training and education about QoL
  and its meaning to different constituents.
• Help LTC facilities of different cultures and
  ethnic mix determine which QoL parameters to
  focus on in improving the quality of life for
  their residents. 

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Examples of Items

• Quality of life for residents in long term care
  includes
• having a variety of activities throughout the day
  and evening.
• having someone that will speak on my behalf even
  if I don't have family to do it.
• having devices to help me be as independent as
  possible (motorized wheelchair, reacher,
  microphone, reading machine, etc.).
• having a say in my daily schedule (appointments,
  activities, personal care and medications).
• knowing that physicians and health care providers
  are responsive and timely.
• feeling that people care about my psychological
  and emotional state.
• having control over the temperature in my room.
• knowing my children are financially secure.
• having my food prepared and seasoned the way I
  want.
• knowing people wont give up on me.
• having staff always treat me with respect.
• includes knowing the building is safe and secure.
• Quality of life for residents in long term care
  includes having the environment be clean and odor
  free

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Data Collection and Analysis (for presentation)

• Items Final set of 88 items distilled from over
  800 items generated at brain-storming sessions
• Participants 4 family members and 8 staff
  members
• Data Collection 10 participants did sorting and
  rating tasks 2 did just sorting task
• Data Entry Sorting and importance rating data
  entered into Concept Systems Global dedicated
  project website
• Analysis Multidimensional scaling and
  hierarchical cluster analysis used to generate
  maps and go-zones
• Implementation Staff conduct final rating for
  implementation feasibility
• Interpretation Final interpretation session with
  selected participants

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Results (For demonstration only)

• Cluster Map with points and cluster labels
• Cluster map with point ratings

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Perceived Quality of the Staff
Accessibility and Advocacy
Personal Autonomy
Community
Food
Choices
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Next Steps

• Translate items into a Quality of Life Assessment
  Instrument
• Conduct a field test in partnership with other
  organizations to determine reliability and
  validity