Prelims

Half Title Page

FACING DEATH

Series Page

CONTEMPORARY PERSPECTIVES IN FAMILY RESEARCH

Series Editor: Sampson Lee Blair

Recent Volumes:

Editorial Board

• Anja-Kristin Abendroth

  Bielefeld University

  (Germany)

• Clarence M. Batan

  University of Santo Tomas

  (Philippines)

• Eli Buchbinder

  University of Haifa

  (Israel)

• Yu-Hua Chen

  National Taiwan University

  (Taiwan)

• Patricia Neff Claster

  Edinboro University

  (United States of America)

• Teresa M. Cooney

  University of Colorado-Denver

  (United States of America)

• Rosalina Pisco Costa

  University of Évora

  (Portugal)

• Alda Britto da Motta

  Federal University of Bahia

  (Brazil)

• Olufemi Adeniyi Fawole

  University of Ilorin

  (Nigeria)

• Ana Josefina Cuevas Hernandez

  University of Colima

  (Mexico)

• Man-Yee Kan

  University of Oxford

  (United Kingdom)

• Timothy J. Madigan

  Mansfield University

  (United States of America)

• Marion Müller

  University of Tuebingen

  (Germany)

• Josip Obradović

  University of Zagreb

  (Croatia)

• Christina L. Scott

  Whittier College

  (United States of America)

• Ria Smit

  University of Johannesburg

  (South Africa)

• Heidi Williams

  Virginia Tech

  (United States of America)

Title Page

CONTEMPORARY PERSPECTIVES IN FAMILY RESEARCH: VOLUME 19

FACING DEATH: FAMILIAL RESPONSES TO ILLNESS AND DEATH

EDITED BY

CHRISTINA L. SCOTT

Whittier College, USA

HEIDI M. WILLIAMS

Virginia Polytechnic Institute and State University, USA

and

SIRI WILDER

The University of Texas at Dallas, USA

United Kingdom – North America – Japan – India – Malaysia – China

Copyright

Emerald Publishing Limited

Howard House, Wagon Lane, Bingley BD16 1WA, UK

First edition 2022

Editorial matter and selection © 2022 Christina L. Scott, Heidi M. Williams and Siri Wilder. Published under exclusive licence by Emerald Publishing Limited. Individual chapters © 2022 Emerald Publishing Limited.

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No part of this book may be reproduced, stored in a retrieval system, transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise without either the prior written permission of the publisher or a licence permitting restricted copying issued in the UK by The Copyright Licensing Agency and in the USA by The Copyright Clearance Center. Any opinions expressed in the chapters are those of the authors. Whilst Emerald makes every effort to ensure the quality and accuracy of its content, Emerald makes no representation implied or otherwise, as to the chapters’ suitability and application and disclaims any warranties, express or implied, to their use.

British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

ISBN: 978-1-80382-264-8 (Print)

ISBN: 978-1-80382-263-1 (Online)

ISBN: 978-1-80382-265-5 (Epub)

ISSN: 1530-3535 (Series)

Contents

About the Contributors

Sara Albuquerque is an Assistant Professor at Universidade Lusófona. She has published several articles in scientific journals and book chapters with a focus on grief processes, individual and marital adjustment after the loss of a child, dyadic coping, post-traumatic growth, continuing bonds and, recently, on the impact of the pandemic in the grief processes, both in children and adults. She is currently the Coordinator and a Clinical Psychologist of the Grief Consultation at the PIN Clinical Center – at all stages of life (in Lisbon), whose action focuses mainly on the assessment and intervention with children, adolescents, and adults, in grief by death and chronic illnesses and divorce situations. She also gives several workshops on grief and emotional regulation.

F. Amos Bailey, PhD, MD FACP, FAAHPM is a Professor of Medicine at the University of Colorado, School of Medicine and the Director of the Masters of Science of Palliative Care and Interprofessional Palliative Care Certificate Programs. He moved to Colorado in the summer of 2014 to join colleagues at the Anschutz Medical Campus to develop on-line programs to bring palliative care education to healthcare providers who want to begin or expand their practice in palliative care. He studied medicine at the University of South Florida and completed a residency in Internal Medicine at the University of Vermont. In 1986, he moved to the University of Alabama at Birmingham (UAB) for a Fellowship in Medical Oncology. In 1989, he joined a practice in rural West Virginia. It was here that he began to work in Home Hospice and began to educate himself in Hospice and Palliative Care. In 1994, he returned to Birmingham and founded the Balm of Gilead Palliative Care Program, which was featured in the Bill Moyers’ documentary On Our Own Terms. In 2001, he was recruited to establish the Safe Harbor Palliative Care Program at the Birmingham VAMC. His work in Birmingham was focused on education and training in hospice and palliative care for medical students, residents, fellows, and other clinical providers.

Carley Barrett, M.S., is a Certified Child Life Specialist who supports children and families in the emergency department at St. George Regional Hospital. She received a Bachelor’s degree in Child Development from The University of Akron, as well as her Master’s degree in Family and Consumer Sciences with an emphasis in Child Life from Illinois State University. While at The University of Akron, she gained experience working as a Nursing Assistant on a palliative care unit at the Cleveland Clinic and supported children impacted by cancer as an intern at The Gathering Place. During her time at Illinois State University, she had the opportunity to complete child life specific clinicals in four different hospitals and assisted in teaching children at a local childcare center. Additionally, she worked as a graduate assistant where she assisted with teaching family and consumer science courses and conducting related research.

Kathryn L. Burgio, PhD, is a Behavioral Psychologist and Clinical Investigator with 40 years of experience in behavioral medicine, gerontology, and geriatric medicine. She completed her doctoral training at the University of Notre Dame and a fellowship in Behavioral Medicine at the National Institute on Aging, NIH. During her tenure at the University of Alabama at Birmingham (UAB), she has served as the Director of the Social and Behavioral Sciences Section in the Division of Gerontology, Geriatrics, and Palliative Care and Founding Director of the UAB Continence Program. She also served as an Associate Director for Research at the Birmingham/Atlanta VA Geriatric Research, Education, and Clinical Center (GRECC) and the Director of the GRECC Fellowship in Advanced Geriatrics. Currently, she is a Professor of Medicine (Emerita) and an Assistant Director of the Deep South Resource Center for Minority Aging Research (RCMAR). Her research agenda has focused on genitourinary disorders, particularly urinary incontinence, and has included investigations of its prevalence and risk factors and clinical studies of the effectiveness of behavioral treatments with a variety of populations. She has completed several clinical trials investigating various interventions for incontinence funded by the National Institutes of Health and the Department of Veterans Affairs. She has published extensively in the field and is an international expert on behavioral interventions. Beginning in 2001, her research interests extended to palliative medicine and interventions to change provider behavior and improve end-of life care. She has led several team projects related to implementing palliative care education interventions, including the multi-site, “Best Practices for End-of-Life Care for Our Nation’s Veterans” (BEACON) project funded by the Department of Veterans Affairs.

Asuman Buyukcan-Tetik is an Assistant Professor in the Psychology Program of Sabanci University, Turkey. Her research investigates the relational processes and interdependence between family members after major life events such as losing a significant other, marriage, and transition to parenthood. She aims to integrate the theoretical and methodological approaches of social, family, clinical, and developmental psychology. Most of her papers include dyadic, family-level, and (intensive) longitudinal studies. Currently, she collects data from bereaved parents using a diary method to examine the effects of relationship quality and positive emotions on grief adjustment.

Patricia Drentea, PhD, is a Professor in the Department of Sociology at the University of Alabama at Birmingham (UAB). Her interests include aging, end-of-life issues, caregiving and mental health, debt, and the effects of debt on health and well-being. She wrote the book Families and Aging in 2019 (Rowman & Littlefield). The book examines how social changes in families in the United States, such as delayed childbearing, divorce, being single, and so on affect families and individuals as they age. The book is written with an emphasis on helping a younger audience understand how families will be in the future with social trends such as increasing numbers of multiracial families, same-sex couples and women starting families later in life. She examines topics such as caregiving, work and retirement, activities, and health. Her recent work examines caregiving and end-of-life issues, grandparenting, and the emotional labor of nurses. She also works on research about debt and mental health. She has published in multiple journals including The Gerontologist, The Journal of Health and Social Behavior, Aging and Health, Contexts, the Journal of Palliative Care, and CANCER. She is currently on the editorial board of Society and Mental Health.

Maarten C. Eisma is an Assistant Professor of Clinical Psychology at the University of Groningen. His research interests include the assessment, etiology and (internet-based) cognitive-behavioral treatment of complicated grief. Over the past decade, he has published more than 60 peer-reviewed scientific articles and book chapters. In 2019, he received a prestigious Dutch Research Council VENI Grant to investigate loss-related approach and avoidance behaviors in complicated grief. He is an editorial board member of Death Studies and a member of the Dutch/Flemish Research School Experimental Psychopathology.

Jenny Ferizoviku is a Psychologist and Psychotherapist. She has been a Psychologist at the Italian Association Amyotrophic Lateral Sclerosis (A.I.S.L.A.), and she works now at the Italian Association for the Fight Against Muscular Dystrophy (UILDM) of Milano and Monza (Italy) and at the Niguarda Hospital in Milan. Her fields of interests include disability, EMDR therapy and health psychology.

Katelyn Y. Graves is a Research Faculty in Behavioral Sciences & Social Medicine at the Florida State University College of Medicine. She has a background in Demography and Sociology, with an emphasis on biosocial health. She conducts demographic and statistical analyses using software packages such as Stata, and analyzes secondary data sets such as Medicare and Medicaid claims. She presently works on several evaluations assessing public health programs and improving population health. She holds a PhD and MS in Social Demography and a BS in Psychology, all from Florida State University. Follow her on LinkedIn @katie-graves-6b429569.

Rebecca Gregory, M.S., is a Child Life Specialist and a current Ph.D. student in Chicago, Illinois. Her research interests include using a developmental lens to assess the cognitive understanding of traumatic events and how to best support children through trauma. Her current role as a child life specialist at the Chicago Children’s Advocacy Center grants her the opportunity to help children cope with trauma related to childhood sexual abuse. In addition to being a student, she is a Teaching Assistant within the child life department at the Erikson Institute, where she works closely with Certified Child Life Specialists from a multitude of Chicago children’s hospitals to teach graduate students in child life and child development.

Karen Hoefer received her M.A. in General Sociology at East Tennessee State University. Her thesis was on the Quality of Life of Adults Who Attempted Suicide. She is currently working on her PhD in Medical Sociology at the University of Alabama at Birmingham. Her main focus at the moment is PTSD validation both inside and outside the military community. Her interests include loss of identity in mental hospitals, quality of life, death and dying, and mental health.

Helle Holmgren has an M.Sc. in Psychology from Aarhus University/Denmark and a PGDip in Psychobiology of Stress from Roehampton University/London. She received her Ph.D. from Aarhus University/Denmark in 2021. The dissertation shed light on male grief, children’s experiences of losing a mother, work–life balance following bereavement and finally, what bereaved individuals themselves make of the new diagnosis of prolonged grief disorder in ICD-11. Her career combines applied research with an ongoing involvement in clinical practice. She has worked in the field of school counseling and volunteered in a shelter for battered women and their children, as well as worked therapeutically with young adults from families with drug and alcohol addictions. Her primary research interests are within the areas of psychotraumatology, bereavement, grief, family studies, and qualitative methods. She is currently working on a book project and writing scientific articles. Her recent publications appeared in Journal of Family Issues, Illness, Crisis & Loss, and OMEGA – Journal of Death and Dying.

Katrina Kimport, PhD, is an Associate Professor in the Department of Obstetrics, Gynecology & Reproductive Sciences and a Research Sociologist in the Advancing New Standards in Reproductive Health (ANSIRH) program at the University of California, San Francisco. Her research broadly focuses on the (re)production of inequality, with a particular emphasis on gender and sexuality-based inequality. Her more specific research interests include people’s experiences of preventing pregnancy, pregnancy decision-making, and abortion care. Her work has been published in multiple journals, including the Journal of Health and Social Behavior, Social Science & Medicine, and Gender & Society. She is the author of No Real Choice: How Culture and Politics Matter for Reproductive Autonomy (2022, Rutgers University Press) and Queering Marriage: Challenging Family Formation in the United States (2014, Rutgers University Press), and co-author, with Jennifer Earl, of Digitally Enabled Social Change (2011, MIT Press).

Kathryn McGrath received her B.A. in Applied Psychology & Human Development and English from Boston College in 2019, and her M.A. in Comparative Human Development from The University of Chicago in 2020. She is interested in social psychology, with a particular emphasis on the ways social factors shape mental health outcomes. Her other research interests include interpersonal relationships, social cognition, and theoretical sociology.

Alexandra C. H. Nowakowski is an Assistant Professor in Geriatrics and Behavioral Sciences & Social Medicine at the Florida State University College of Medicine. They are a medical sociologist, public health program evaluator, and community advocate. Their research, teaching, and outreach focus on health equity in aging with chronic disease. They hold a PhD and MS in Medical Sociology from Florida State University, an MPH in Health Systems and Policy from Rutgers University, and a BA in Political Science from Columbia University. Follow them on Twitter @XanNowakowski or on LinkedIn@xan-nowakowski-9a368b7.

Lorenza Palazzo is a Psychologist. She currently has a research fellowship at the University of Padova for “Baobab project” concerning the psychological impact of the ALS disease on children and adolescents who have a close relative affected by it. Her research interests include also grief, death education, ambiguous loss, and anticipatory grief.

Gabriella Rossi is a Psychologist and Psychotherapist, President of the Italian Association for the Fight Against Muscular Distrophy (UILDM) of Monza and Brianza (Italy). She has been the Coordinator of Italian Group of Psychologists of ALS disease (GipSLA) of the clinical psychology department of NeMo Clinical Center of Milano.

Luke T. Russell, PhD, CFLE-P., is an Assistant Professor in the Department of Family and Consumer Sciences at Illinois State University. His research investigates how individuals living in diverse family structures (single-parent, post-divorce, stepfamilies) foster resilience and maintain family-members’ health and well-being. He also studies how broader social institutions (e.g., health care systems, schools, and government agencies) can function as supportive resources for such families. He teaches courses in communication and helping skills, public policy, and enduring issues for couples and families.

Livia Sani, Ph.D., is a Clinical Psychologist, and Associate Researcher at the SuLiSoM laboratory of the University of Strasbourg (France), is an expert in emergency psychology and psycho-traumatology. Her research interests focus on post-traumatic stress disorder, bereavement, qualitative and quantitative research.

Henk A. W. Schut is a Clinical Psychologist and an Associate Professor of Clinical and Health Psychology at Utrecht University, the Netherlands. His research interests cover processes of coping with loss and the efficacy of bereavement care and grief therapy. He works as a trainer for professionals dealing with bereaved people and supervises post-academic clinical psychologists in research projects. He is the coauthor of scientific and professional articles and books on grief, bereavement, and death (e.g., Handbook of Bereavement Research and Practice (2009), with Maggie Stroebe, Wolfgang Stroebe and Bob Hansson; and Complicated Grief: Scientific Foundations for Health Care Professionals (2012), with Maggie Stroebe & Jan van den Bout).

Margaret S. Stroebe is a Professor Emerita (Utrecht & Groningen Universities, NL). She has long specialized in the bereavement research field. With Henk Schut she developed the Dual Process Model of Coping with Bereavement. Her books include Bereavement in Later Life, with Robert Hansson; the and Handbook of Bereavement Research and Practice, with Robert Hansson, Henk Schut and Wolfgang Stroebe. She edited Complicated Grief: Scientific Foundations for Health Care Professionals, with Henk Schut and Jan van den Bout. Her honors include an Honorary Doctorate (University of Louvain-la-Neuve, Belgium), Scientific Research Award (ADEC, U.S.A.), and title: Officer of the Order of Orange Nassau (NL).

Chang Su-Russell, PhD, CFLE-P., is an Assistant Professor in the Department of Family and Consumer Sciences at Illinois State University. Her research focuses on socializing young children in challenging social contexts. Guided by this research agenda, she has developed two lines of research. First, she has investigated how parents of young children discuss challenging social issues in the United States and how college students get prepared for challenging conversations for their future career when working with children and families. Second, she has investigated the transition to siblinghood and sibling relationships in the post-one-child-policy era in mainland China. She teaches in the Human Development and Family Science program in the Department of Family and Consumer Sciences. Her four undergraduate courses include: life-span parenting, guidance and development of infants and toddlers, multicultural family studies, and research methods in family and consumer sciences.

J. E. Sumerau is an Associate Professor and the Director of Applied Sociology at the University of Tampa. She is the author of over 70 scholarly articles and chapters as well as five academic books focused on the intersection of sexualities, gender, religion, health, and violence in society. She is also the author of five novels focused on LGBTQIA experiences in the United States. She holds a PhD and MS in Social Psychology from Florida State University, and a BA in Political Science from Augusta University. Follow her on Twitter @jsumerau or visit her website at www.jsumerau.com.

Ines Testoni is a Professor of Social Psychology and the Director and Founder of the Master in “Death Studies & The End of Life” at the University of Padova. She is the author of numerous publications on grief, death education, gender studies, social psychology of mafia phenomena and prison, and interventions with the use of psychodrama.

Teresa Tosatto has completed her Master’s Degree in Clinical and Dynamic Psychology at the University of Padova, in 2021. She is currently attending her post-graduate internship. Her fields of interest are thanatology and end-of-life psychology, developmental psychology, clinical child psychology, and psychoanalysis.

Beverly Rosa Williams, PhD, holds a Bachelor of Arts in Sociology and History from Salve Regina University in Newport, Rhode Island, a Master of Arts in Sociology/ Anthropology from the University of Southern Mississippi in Hattiesburg, Mississippi and a Ph.D. in Medical Sociology from the University of Alabama at Birmingham (UAB). She completed a three-year NIA post-doctoral fellowship in Clinical and Behavioral Training in Gerontology and a two-year NIH Clinical Research Training Program. She has been on faculty in the Department of Medicine, Division of Gerontology, Geriatrics, and Palliative Care at the University of Alabama at Birmingham since 2005. She is a UAB Comprehensive Center for Healthy Aging Faculty Scientist, Center for Palliative and Supportive Care Scholar, Minority Health and Health Disparities Research Center Associate Scientist, and Birmingham/Atlanta Geriatric Research, Education, and Clinical Center (GRECC) Investigator. She has expertise in qualitative methods of inquiry, analysis, and interpretation. Her research interests include bereavement, palliative and end-of-life care, health disparities, women’s health, and religion, spirituality and health. She has authored or co-authored more than 75 articles in peer-reviewed journals. Her work has been supported by grants from VA Health Services Research & Development (HSR&D) and the National Institutes of Health (NIH). She and her colleagues have contributed to the literature on geriatric bereavement, expanding knowledge of the psychosocial attributes of the pre-widowhood period, examining the impact of spousal loss on morbidity and mortality, and exploring the socially isolating effect of prolonged widowhood. Her qualitative interviews with newly bereaved family members have enhanced understanding of contextual factors impacting bereavement and sensitized the field to ethical and methodological issues related to research with bereaved persons.

Foreword

Death is one of the rare certainties of life. While rituals surrounding death may vary by geography, culture, and time, suffering the loss of a loved one is a universal experience. However, the ongoing COVID-19 pandemic has increased global awareness of and proximity to serious illness and death. Since the outbreak of the virus in 2019, hundreds of millions of individuals have been infected and the SARS-CoV-2 virus has been directly implicated in millions of deaths world-wide. Societal changes, related to social distancing requirements and city-wide lockdowns attempting to slow the spread of disease, have made it more difficult for individuals to find support in their grieving process. As a result, those coping with the death of a loved one have often found themselves caring for family members and managing the bereavement process in isolation. Facing daily death tolls and constant efforts to avoid infection has kept death in the forefront of our collective awareness. As a multidisciplinary endeavor, the current volume of Contemporary Perspectives in Family Research includes contributions from a variety of methodologies and contexts to provide a timely exploration of familial responses to illness and death.