Full Description
Statistical data suggest that many people with chronic health conditions pass away at much younger ages than their peers. Yet large quantitative datasets that address aging with chronic illness often do not capture the diversity of people with chronic diseases and their experiences of growing older. The assumptions built into many core data resources on aging often erase the journeys of people occupying marginalized social locations. Likewise, these same assumptions can result in omission of people who survive for long amounts of time while managing conditions with relatively short median life expectancies.
These barriers to understanding diverse experiences of aging with chronic illness are endemic but not unique to quantitative research. Qualitative data collection can indeed offer richer insight into both of these intersecting sets of aging experiences. However, even more in-depth approaches to inquiry with smaller groups of people require asking questions that explicitly explore and affirm the diversity of identities and health statuses held by older adults. A more constructive and impactful approach to capturing meaningful data on diverse experiences of aging with chronic disease is thus to focus on affirming study architecture, rather than viewing one particular set of methods as a panacea for exclusion.
With this new edited volume, the editors support the broader goal of expanding knowledge on diverse trajectories of aging with chronic health conditions. Contributed chapters range from critical reviews to methods primers to empirical investigations. The authors focus synergistically on amplifying the attributes and experiences of diverse social populations and on highlighting journeys of longevity with chronic disease.
Contributors are: Nicholas B. DiCarlo, Angela Hunt, Ian M. Johnson, Nat Jones, Kristen D. Krause, Nik M. Lampe, Ginny Natale, Audria LB, Kirsten Ostergren Clark, Manacy Pai, Michele Wise Wright and Terry Gene Wright.
Contents
Acknowledgements
List of Illustrations
Notes on Contributors
Introduction
Alexandra "Xan" C.H. Nowakowski and J.E. Sumerau
1 "Spend Your Spoons Wisely": Conceptualizations of Time, Energy, and Aging Invisibly with Crohn's Disease
Ginny Natale and Manacy Pai
2 A Case Study of BIPOC Spouses with Rare and Genetic Diseases
Michele Wise Wright and Terry Gene Wright
3 Politicizing Therapy with Older Adults Experiencing Urological Distress
Ian M. Johnson and Nicholas B. Dicarlo
4 Gender Diverse Aging
Nat Jones
5 Resilience in the Face of Life Challenges Experienced by Older Adults Living with HIV
Kristen D. Krause
6 Embracing and Authentic Feminine Self
Angela Hunt (with Audria LB)
7 Fathers Who Have Adult Children with Developmental Disabilities Living in Their Home and Their Relationships with Them: A Qualitative Study
Kirsten L. Ostergren Clark
8 Life Course Eating Disorder Recovery on the Margins
Nik M. Lampe
9 Still Living, Still Dying: Autoethnographic Inquiry on Aging with Cystic Fibrosis
Alexandra "Xan" C.H. Nowakowski
