Whose Quality of Life is it anyway: the collective health experience and quality of life


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Whose Quality of Life is it anyway: the collective health
experience and quality of life. Paper presented to the 2011 Aging and Society: An
Interdisciplinary Conference, University of California, Berkeley, CA . Paper recipient of the 2011 Graduate Scholar Award.

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Whose Quality of Life is it anyway: the collective health experience and quality of life

  1. 1. “Whose Quality of Life is it anyway: TheCollective Experience and Quality of Life” Michele Battle-Fisher, MPH, MA Doctoral student, The Ohio State University Instructor, Wright State University Aging & Society Conference Graduate Scholar Award Recipient University of California, Berkeley November 8- 9, 2011
  2. 2. Overview • Quality of Life• Influence of social networks on QOL • Objectivity & Subjectivity in QOL• Introduction of “Collective QOL” and Concentric Model of Health-Bound Networks • Introduction of “Pass Back Benefit” through social networks • Ethical implications • Future directions
  3. 3. Quality of Life• Health- personal experience with physical and mental domains (Muldoon et al., 1998)• QOL- functional status versus subjective wellbeing (Muldoon et al., 1998)• Gill & Feinstein (1994)- QOL “perceived perception”• QOL framed as something “should have” & not as dynamic• No solution for altering a person’s QOL and what is happening in someone’s head. (Gurland, personal communication)
  4. 4. Social Networks and QOL• House et al. (1988)- social support fails to account for the social network dynamics• Smith & Christakis (2008)- embeddedness of social support next step• Cornwell & Waite (2009)- social isolation linked to lower self-rated health• Lin (2000)- social resources “embedded in ties”• Steinhauer et al. (2000)- clinical staff focus on physical, patients on mental domain during end of life
  5. 5. Objective & Subjective QOL Conventional Objective QOL Subjective QOL•Measurement of personal •“Happinessfunction requirements” necessary•QOL as individual conditions for happiness in a given society (McCall,1975)•Measurement across life • Bramston et al. (2002) Intimacy,domains (e.g. physical, community involvement andinterpersonal, occupational) emotional well-being domains•Health status, functional •Individual level- lonelinessstatus, quality of life used •Systems level- “sense ofinterchangeably community” (Muldoon et al.,1998)
  6. 6. A step forward- Collective QOL• Proposed by Battle-Fisher (2011)• Patient embedded in social network(s)• Subjective linked to involvement with patient’s functional status• Caring others (surrogates) affected by life state of patient• QOL originated by illness experience of patient• Decreased physical and mental functionalities across networks• Surrogates serve different purposes to patient
  7. 7. Collective QOL• Not same as “subjective wellbeing” assurrogates’ lives are also affected by patient’sdisease state• Particularly salient due to increased longevityand chronicity of older patients• Calls for unit of analysis to be at network level,not patient level (though patient is ego for socialnetwork analysis)•Not a replacement of personal QOL measure,but a necessary collective view of QOL notattended to presently
  8. 8. A possible application of collective QOL “Concentric Model of Health-Bound Networks” © (Battle-Fisher & Mawasha, 2011)
  9. 9. Pass back benefit (Battle-Fisher, 2011)
  10. 10. Ethical implications• Is it ethical to accept a patient’s “low” QOL objective score and a high, subjective ranking of personal or collective QOL?• Does maintaining patient autonomy lead us to a false reality of chronic illness management?• Should nominalization of benefit seek personal QOL benefit (bottom up) or collective QOL to trickle down to patient (top-down)? (Gusmano, personal communication)• What of discordance in collective QOL as valued among surrogates? (Gusmano, personal communication)
  11. 11. Future directions• To what extent should the surrogates be responsible for the patient’s QOL (guilt, power, self-imposed responsibility at play)?• Nested QOL networks (overlap of illness narratives within network)• How might utility as conceived by surrogates work?• Does the difficult/ noncompliant patient or network affect the cycle?
  12. 12. Future directions• Is there a ripple effect of influence within networks (homophily) under pass back benefit?• How might end of life decisions be influenced by pass back?• How might pass back fit within Concentric Model of Health-Bound Networks?(Battle-Fisher & Mawasha, 2011)
  13. 13. Thank you to Dr. Barry Gurland, Columbia University, Director of the Morris W. Stroud III Center for the Study of Quality of Life  Dr. Michael Gusmano, The Hastings Center, NY Joann Mawasha, Psy.D., Wright State MPH student  Faculty, staff and students of the Ohio State and Wright State Master of Public Health Programs  My family  Mary Anne Benner for graphics assistance  University of Illinois Common Ground Publishing
  14. 14. References• Battle-Fisher, M. (2011). Whose (Quality of) Life is it anyway? Unpublished manuscript.• Battle-Fisher, M. & Mawasha, J. (2011). Development of the Concentric Model of Health- Bound Networks: Understanding Quality of Life through the ecological model and social network theory. Unpublished manuscript.• Bramston, P., Pretty, G. & Chipuer, H. (2002). Unravelling subjective quality of life- an investigation of individual and community determinants. Social Indicators Research. 59, 261- 74.• Cornwell, E. & Waite, L. (2009). Social disconnectiveness, perceived isolation, and health among older adults. Journal of Health and Social Behavior. 50(1), 31-48.• Gill, T. & Feinstein, A. (1994). A critical appraisal of the quality of quality of life measurements. JAMA. 272, 619-25.
  15. 15. References• House, J., Umberson, D. & Landis, K. (1988). Structures and Processes of Social Support. Annual Review of Sociology. 14, 293-318.• Lin, N. (2000). Inequality of social capital. Contemporary Sociology. 29, 785-795.• McCall, S. (1975). Quality of Life. Social Indicators Research. 2, 229-248.• Muldoon, M., Barger, S., Flory, J., & Manuck, S. (1998). What are the quality of life measurements measuring? BMJ. 316, 542- 5.• Smith, K. & Christakis, N. (2008). Social networks and health. Annual Review of Sociology. 34, 405-29.• Steinhauser, N., Christakis, N.,…& Tulsky, J. (2000). Factors considered important at the end of life by patients, family, physicians and other care providers. JAMA. 284, 2476-82.
  16. 16. The science of medicine. The art of healing.