“Whose Quality of Life is it anyway: The Collective 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

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

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)

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

Objective & Subjective QOL
Conventional Objective QOL
Measurement of personal function
QOL as individual
Measurement across life domains (e.g. physical, interpersonal, occupational)
Health status, functional status, quality of life used interchangeably
(Muldoon et al.,1998)
Subjective QOL
“Happiness
requirements” necessary
conditions for happiness
in a given society (McCall,1975)
Bramston et al. (2002) Intimacy, community involvement and emotional well-being domains
Individual level- loneliness
Systems level- “sense of community”

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

Collective QOL
Not same as “subjective wellbeing” as surrogates’ lives are also affected by patient’s disease state
Particularly salient due to increased longevity and chronicity of older patients
Calls for unit of analysis to be at network level, not patient level (though patient is ego for social network analysis)
Not a replacement of personal QOL measure, but a necessary collective view of QOL not attended to presently

A possible application of collective QOL
“Concentric Model of Health-Bound Networks” ©
(Battle-Fisher & Mawasha, 2011)

Pass back benefit (Battle-Fisher, 2011)

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)

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?

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)

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

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.

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.

The science of medicine. The art of healing.