Prelims

DISABILITY AND THE FAMILY

CONTEMPORARY PERSPECTIVES IN FAMILY RESEARCH

Series Editor: Sampson Lee Blair

Previous Volumes:

• Anja-Kristin Abendroth

  Bielefeld University, Germany

• Anna-Lena Almqvist

  Mälardalen University, Sweden

• Clarence M. Batan

  University of Santo Tomas, Philippines

• Eli Buchbinder

  University of Haifa, Israel

• Yu-Hua Chen

  National Taiwan University, Taiwan

• Patricia Neff Claster

  Western Pennsylvania University, USA

• Teresa M. Cooney

  University of Colorado-Denver, USA

• Rosalina Pisco Costa

  University of Évora, Portugal

• Alda Britto da Motta

  Federal University of Bahia, Brazil

• Olufemi Adeniyi Fawole

  University of Ilorin, Nigeria

• Veronica De Leon Gregorio

  National University of Singapore, Singapore

• Ana Josefina Cuevas Hernandez

  University of Colima, Mexico

• Man-Yee Kan

  University of Oxford, UK

• Timothy J. Madigan

  Commonwealth University, USA

• Marion Müller

  University of Tuebingen, Germany

• Josip Obradović

  Catholic University of Croatia, Croatia

• Christina L. Scott

  Whittier College, USA

• Ria Smit

  University of Johannesburg, South Africa

• Heidi M. Williams

  Virginia Tech, USA

• Yongjun Zhang

  The State University of New York, USA

CONTEMPORARY PERSPECTIVES IN FAMILY RESEARCH - VOLUME 27

DISABILITY AND THE FAMILY: CHALLENGES, RESOURCES, AND RESILIENCE

EDITED BY

PATRICIA NEFF CLASTER

Pennsylvania Western University, USA

and

SAMPSON LEE BLAIR

The State University of New York, Buffalo, USA

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

Emerald Publishing Limited

Emerald Publishing, Floor 5, Northspring, 21–23 Wellington Street, Leeds LS1 4DL.

First edition 2025

Editorial matter and selection © 2025 Patricia Neff Claster and Sampson Lee Blair.

Individual chapters © 2025 The authors.

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

ISBN: 978-1-83797-592-1 (Print)

ISBN: 978-1-83797-591-4 (Online)

ISBN: 978-1-83797-593-8 (Epub)

ISSN: 1530-3535 (Series)

Patricia Neff Claster is a Family Sociologist and holds the title of Professor at PennWest University, Edinboro, in the Department of Social Work, Sociology, and Human Services. She received her master’s degree and Ph.D. in Sociology from the State University of New York at Buffalo. Her teaching and research interests center on gender, intimate and family relationships, and child and adolescent development. She has published and presented numerous papers that focus on different familial, social, and structural factors that influence the educational, occupational, marital, and parenting aspirations of American adolescents. In terms of her most recent work, she has a coauthored chapter in a collaborative introductory sociology textbook, Introduction to Sociology: A Collaborative Approach, 6th Edition. She served as the Guest Editor for Contemporary Perspectives in Family Research, volumes 7 and 17. She was also the Guest Editor for Sociological Studies of Children and Youth, volumes 19 and 21, and she published research in volume 18 of the book series. Since 2016, she has served as the Senior Editor for the journal Sociological Viewpoints.

Sampson Lee Blair is a Family Sociologist and Demographer at The State University of New York (Buffalo). He received his B.S. and M.S. degrees from Virginia Tech, and his Ph.D. from Penn State. Much of his research focuses upon parent–child relationships, with particular emphasis on child and adolescent development. In 2010, he received the Fulbright Scholar Award from the U.S. Department of State, wherein he conducted research on parental involvement and children’s educational attainment in the Philippines. He has examined a wide variety of relationship dynamics within families. He has published 22 books, in addition to numerous journal articles and book chapters, and has presented over 150 research papers at conferences in the United States and abroad and has served as keynote speaker on numerous occasions. His recent research has focused upon marriage and fertility patterns in China. In 2022, he published Mate Selection in China: Causes and Consequences in the Search for a Spouse (with Timothy J. Madigan and Fang Fang). He has served as Chair of the Children and Youth research section of the American Sociological Association, as Senior Editor of Sociological Inquiry, Guest Editor of Sociological Studies of Children and Youth, and on the editorial boards of Asian Women, Journal of Applied Youth Studies, Journal of Divorce and Remarriage, Journal of Family Issues, Marriage and Family Review, Social Justice Research, Sociological Inquiry, International Journal of Criminology and Sociology, and Sociological Viewpoints. He also serves on the international advisory board of Tambara, at Ateneo de Davao University, in the Philippines. In 2023, he was re-elected as Vice-President (North America) of the Research Committee on Youth (RC34), in the International Sociological Association. Since 2011, he has served as the Editor of Contemporary Perspectives in Family Research. He is a recipient of the SUNY Chancellor’s Award for Excellence in Teaching. Abroad, he has served as a Visiting Professor at the University of Santo Tomas (Manila) and Xavier University (Ateneo de Cagayan), in the Philippines. In China, he has been a Visiting Professor at East China Normal University (华东师范大学), Qingdao University (青岛大学), Shanghai International Studies University (上海外国语大学), and Shanghai University of Finance and Economics (上海财经大学). In 2020, he was initiated into the NCFR Legacy Circle of the National Council on Family Relations. In 2021, he received the Distinguished Career Service Award from the American Sociological Association’s research section on Children and Youth.

Eileen M. Brennan has concerned about improving the life experiences of families that have young people with disabilities as members. She has worked to gain a more accurate and compassionate understanding of the cultural dilemmas that they face and the opportunities that improve their lives. While studying for her Doctoral degree in Psychology at the University of Notre Dame, she became intrigued with the possible discrimination that people with accented speech encountered. After joining the social work faculty at the University of Kansas, she studied how families managed discrimination they encountered based on the emotional or behavioral difficulties their children experienced. Later, at Portland State University School of Social Work, she was part of a team of researchers supported by major grants from the National Institute of Mental Health. She and her collaborators examined ways that parents could maintain their employment while they struggled to support children and youth with serious mental health challenges. Work, Life, and the Mental Health System of Care: A Guide for Professionals Supporting Families of Children with Emotional or Behavioral Disorders, which she and Julie Rosenzweig co-authored in 2008, was one of the first books examining the work and family lives experienced by parents caring for children with disabilities. This was followed by research that examined more effective ways to care for children with disabilities in childcare settings. Later work included research that led to the development of guidebooks for parent support providers that examined ways to improve work–family balance and for human resources specialists to help them work more effectively with employees raising children with disabilities. Recent work has also examined the importance of social sustainability in building systems that will support families experiencing work–life challenges as they balance family demands and seek workplace support (ORCID: 0000-0002-2816-7836).

Barbara Chojnacka – Doctor of Social Sciences in the discipline of Pedagogy – is Assistant Professor in the Department of Social Pedagogy at the Institute of Pedagogy, University of Szczecin, Educator (care and re-socialization pedagogy, school pedagogy), Sociologist (applied sociology), and Certified tutor. She is Supervisor of the Student Volunteer Scientific Circle and Founder and Chairman of the Heart Action Foundation, long-term educator at day-care centers (day-care centers, youth club). She works with young people and their families on strengthening social competences, development, and activation and is the Coordinator of youth art projects. She is the Author of the book The Experience of Parentification. Biographical Perspective (Impuls Publishing House, Cracow 2021) and Executor of the National Science Centre Grant – MINIATURA 5, project “Social and intra-family determinants of the phenomenon of young carers,” as part of which she conducted research at the Sheffield Young Carers organization in the United Kingdom, and Co-director of the research project “Diagnosis of the needs and expectations of students and teachers of primary schools in Szczecin on the eve of returning to stationary education.” She is also the University Student Support Coordinator at the University of Szczecin and Co-founder of the US Student Support and Development Team (WiR) (ORCID: 0000-0002-5635-3126).

Ashley Forbush is a PhD student in Human Development and Family Studies at the University of Texas. She earned a master’s degree in Marriage, Family, and Human Development from Brigham Young University and a bachelor’s degree in Family Studies at Brigham Young University and is passionate about learning and helping others develop strong relationships. Her research interests focus on couple and parent–child relationships. She is specifically interested in couple communication, conflict, and power dynamics and the related implicationsfor partners and children. Long-term, she plans to utilize her research to help couples develop positive communication patterns where both partners feel heard, supported, and equal (ORCID: 0009-0008-1804-6003).

Annaliese Grant (she/they) is an Assistant Professor of Sociology at the University of Nevada, Las Vegas. She received her Ph.D. in Sociology at the University of Wisconsin–Madison, with training from the Center for Demography and Ecology and the Institute for Research on Poverty. She studies the mundane everyday aspects of classed family inequality from a feminist perspective using both qualitative and quantitative methods. Her work broadly focuses on care work, responsibilities, and media use in low-income families in the United States. Her most recent research focuses on the classed dynamics of family media use, as well as larger trends in television audiences in the United Kingdom, United States, and Australia. Her ongoing work focuses on the relationship between parent–child closeness and child wellbeing, as well as the classed and gendered role of children’s responsibilities in family life and in daily inequality. Her research has been published in The Journal of Marriage and Family, Poetics, and Children & Society (ORCID: https://orcid.org/0000-0002-6054-6289).

Erling Häggström Gunfridsson is an Associate Professor of Population Studies who uses his competencies to statistically chart disability from past centuries into the future. He has vast experience (c. 25 years), employing statistical analysis to register data on both historical and modern populations using for example Cox proportional hazard analysis, Poisson regression, sequence analysis, and micro simulations (ORCID: 0000-0002-1561-4094).

Marin Henderson-Posther earned her MSW in Clinical Social Work from New York University and her Ph.D. in Social Work and Social Research at Portland State University. She has worked as an Adjunct Professor in the School of Social Work at Portland State University and the University of Portland. She has also had the opportunity to work at the Regional Research Institute on the FUTURES project, develop Peer Support Specialist curriculum, as well as work as an Advanced Field Liaison and Academic Advisor for MSW students. Prior to her Ph.D., she practiced clinical social work in a variety of cities throughout the United States, including New York City, the greater Washington, D.C., area, and Los Angeles with a particular focus on adult mental health. She also has experience working on the National Suicide Hotline performing crisis intervention. Her current research interests include mental health and adverse childhood experiences (ACEs), including better understanding how socio-structural factors influence ACE-related health behaviors in adulthood (ORCID: 0000-0002-2833-4294).

Allison Jendry James is a Visiting Assistant Professor of Sociology in the Department of Anthropology and Sociology at Albion College in Albion, Michigan. She earned her Bachelor of Arts in Sociology and Women and Gender Studies at the University of Michigan-Flint, her Master of Arts in Sociology at Eastern Michigan University, and her Ph.D. in Sociology from Wayne State University. Her research primarily focuses on the social construction of parenthood and more specifically, the experiences of LGBTQ parents. Her second area of research is centered around chronic illness and disability experience. She has published research in journals such as Michigan Family Review, Sociation, and Contemporary Perspectives in Family Research. She teaches courses on race, class, and gender inequalities, families, health, qualitative research methods, and quantitative research methods. She lives in Brighton, Michigan, with her spouse, two dogs, two rabbits, and other pets. In her free time, she enjoys spending time with her spouse and pets, and being outside (ORCID: 0009-0007-5400-9667).

Alexander C. Jensen is an Associate Professor of Human Development in Brigham Young University’s School of Family Life. His research agenda centers on the role of siblings in shaping development across the life course. Of particular focus is the role of parental differential treatment including in the context of disabilities (ORCID: 0000-0003-0534-0488).

Johan Junkka is an Assistant Professor of Historical Demography; his scholarship is mainly grounded in history and historical demography with an extensive experience of over 15 years and has conducted multiple studies on spatial and social patterns during the demographic transition (ORCID: 0000-0003-1527-279X).

Rachel Litchman is a graduate of the University of Wisconsin–Madison and a cartoonist, writer, and consultant who works at the intersection of the homeless youth services field and disability non-profit services sector. As a consultant, she provides training and technical assistance to organizations to help them better serve youth experiencing homelessness and youth with disabilities. She has had comics and writing published in The Washington Post, The Nib, Disability Visibility, Tone, and The Century Foundation, to name a few places. (ORCID: https://orcid.org/0000-0001-7580-6867).

Jessica Lukefahr, having been born with a physical disability herself, she started advocating for others with disabilities as early as her teens. She struggled in joining activities and making sure her needs were met both in and out of school. She soon expanded her advocacy, speaking out for students with mental health needs. From firsthand experience, she witnessed the work–family struggle, through her employed parents, who were her caregivers growing up. They had difficulty in simultaneously raising a child with a disability and managing work (ORCID: 0000-0002-4350-1759).

In college, she continued her advocacy work, helping construct an American Sign Language course in which students with physical disabilities could participate. She also ensured that students with visual impairments had an accessible website from the student housing organization. In 2011, she graduated Summa Cum Laude from the University of Illinois at Urbana-Champaign with an English degree. After college, she held various jobs, some of which included diversity and inclusion components. She even testified before the Texas State Senate’s Finance Committee, advocating raises in attendants’ wages. Since 2021, she has worked for Portland State University’s School of Social Work’s Regional Research Institute. She currently writes and edits articles for journals and conferences involving work–family integration, especially for caregivers of children with disabilities and/or mental health needs and participates in related conferences. Her preferred research interests are those that involve achieving better equity for those affected by all types of disabilities, specifically to improve equity in areas concerning public accessibility, educational opportunities, professional opportunities, work–family balance, durable medical equipment, and access to the tools needed to receive attendant care while also maintaining a full-time job. Her passion is ensuring that people with special needs can live independently in a welcoming society.

Janelly Macias-Martinez is an Entry-level Occupational Therapy Doctoral student at the University of Illinois Chicago, expected to graduate in May of 2025. She holds a Bachelor of Science in Rehabilitation Sciences. As a first-generation Mexican American, her research interests encompass several areas, including culturally competent and advocacy approaches to disability services, family-centered care, and diversity in pediatric occupational therapy. She is particularly focused on promoting inclusion and cultural considerations in occupational therapy for Latinx individuals with or without disabilities, as she is equally committed to extending these efforts to benefit all communities. (ORCID: 0009-0004-0206-1605)

Sandy Magaña holds the Professorship in Autism and Neurodevelopmental Disabilities in the Steve Hicks School of Social Work at the University of Texas at Austin and is the Director of the Texas Center for Disability Studies. She received a Master of Social Work from California State University, San Bernardino, and her Ph.D. from the Heller Graduate School of Social Policy at Brandeis University. She completed Post-Doctoral training from the NICHD funded Post-Doctoral Program in Developmental Disabilities Research at the Waisman Center, University of Wisconsin-Madison. She was a Faculty Member in the UW-Madison School of Social Work for 12 years and later served as a Professor at the Department of Disability and Human Development at the University of Illinois at Chicago. Her current research includes investigating racial and ethnic disparities among children with autism and developmental disabilities and developing culturally relevant interventions to address these disparities. She has received funding for her research from the National Institute of Mental Health, National Institute on Aging, National Institute of Child Health and Human Development, and National Institute on Disability, Independent Living and Rehabilitation Research. She is the principal investigator of the NIDILRR funded project described in the chapter called PODER which is focused on understanding and promoting health among Latinx children with IDD and their family caregivers (ORCID: 0000-0003-1994-061X).

Fredinah Namatovu is an Associate Professor of Public Health, and her scholarly work extends over a span of 15 years. She is interested in research that addresses health inequalities among vulnerable populations. Her scholarly work comprises both qualitative and quantitative analyses. Since 2017, she has studied disability within several projects leading some of these projects herself, contributing results on the health and social well-being and exposure to intimate partner violence among people with disabilities (ORCID: 0000-0001-5471-9043).

Rhoda Olkin, Ph.D., is a graduate of Stanford and UC Santa Barbara, and now a Distinguished Professor at the California School of Professional Psychology at Alliant International University, training doctoral students. She had polio at age one, before there was a polio vaccine. She is the author of three books on the intersection of disability and clinical psychology: What Psychotherapists Should Know about Disability, Disability-Affirmative Therapy, and Teaching Disability. For over 10 years, she has been on the editorial board of the APA journal Rehabilitation Psychology. She is a disability rights activist, does expert witness work related to disability, and provides training on disability affirmative therapy. She is the mother of two grown children and a cat (ORCID: 0000-0002-4982-0929).

Jelena Ombla is an Associate Professor at the Department of Psychology at the University of Zadar (Croatia). She graduated from the University of Zadar in 2008 with a degree in Psychology. She received her doctorate degree (2014) from the Faculty of Philosophy at the University of Zagreb. Since 2009, she has been working at the Department of Psychology at the University of Zadar. She teaches several courses at the undergraduate as well as graduate psychology program (Psychology of Emotion and Motivation, Introduction to Clinical Psychology, Ethics in Psychology, Comparative Psychology and seminars in Personality Psychology). She is also involved in the Postgraduate Programme Leadership and Management of an Educational Institution (course name: Motivation, Work Behavior, and Well-being). Currently, she is a Deputy Manager of Student Counselling Center at the University of Zadar and President of Ethics Committee of the Department of Psychology at the University of Zadar.

So far, she has published 25 scientific papers in national and international journals and scientific books and actively participated in a number of scientific conferences. Most of her papers deal with the topic of interpersonal relations. Her current scientific interests relate to the well-being of parents of children and adults with disabilities. She was until recently a Member of research team of an institutional research project entitled “Well-being of Working Parents of Children with Disabilities,” led by Ana Slišković (Full Professor at the Department of Psychology, University of Zadar) (ORCID: https://orcid.org/0000-0002-3416-6303).

Yali Pang, Ph.D., is a Senior Research Associate of Research Institute for Social Equity at Virginia Commonwealth University (VCU). Her areas of expertise are nonprofit management, social equity, and program evaluation. Her research centers on understanding the impacts of intersecting cultural identities (e.g., race, gender, disability, and country of origin) among minority populations, including how oppression and discrimination may arise through service provision and how the cultural identities of leadership may impact equity in program outcomes. His research has been published in several journals, including Disability & Society and Nonprofit and Voluntary Sector Quarterly. Prior to RISE, he worked as a Research Fellow at the Partnership for People with Disabilities and an Adjunct Professor at L. Douglas Wilder School of Government and Public Affairs and the Department of Political Science at VCU. He holds a Ph.D. degree in Public Policy and Administration and a master’s degree in Corporate Management (ORCID: 0000-0003-2907-5340).

Monika Parchomiuk is a Special Educator and Associate Professor at the Institute of Pedagogy, Maria Curie Sklodowska University in Lublin, Poland. Her research interests include, among others: (a) family of persons with disabilities and chronic illness: adaptation to life with children with disabilities/chronic illness, parental resources, coparenting, and work–family balance; (b) persons with intellectual disabilities: health inequalities, adulthood and aging of persons with intellectual disabilities, positive aspects of functioning, and inclusive research; and (c) students with special educational needs: teachers’ attitudes toward inclusion and teachers’ self-efficacy. She is currently involved in an inclusive study on health inequalities experienced by persons with intellectual disabilities (ORCID: 0000-0002-0756-4242).

Isabella Rosas is an Entry-level Occupational Therapy Doctoral student at the University of Illinois Chicago, expected to graduate in May of 2025. She obtained a Bachelor of Science in Human Development and Family Studies at the University of the Illinois at Urbana – Champaign with a concentration in Child Adolescent Development. Here, she chaired for inclusive communities in the service fraternity Alpha Phi Omega and served as a Project Coordinator with different sites for community work. She interned at Crisis Nursery, an emergency childcare facility, and served as a Personal Assistant for multiple students with physical disabilities at Beckwith Residential Community. She is a second-generation Mexican American with research interests in culturally tailored interventions, advocacy approaches for marginalized communities, accessibility in navigating healthcare systems, and Latinx individuals and caregivers of those who have intellectual and developmental disabilities (ORCID: 0009-0001-2636-7842).

Mariela Saenz is an Entry-level Occupational Therapy Doctoral student at the University of Illinois Chicago, expected to graduate in May of 2025. As a Future Occupational Therapy Practitioner, she plans to utilize her bilingual and bicultural skills to deliver culturally relevant services to her clients from historically marginalized groups, especially the growing heterogeneous Latinx population. She also strives to promote diversity within the occupational therapy profession. She has had the privilege of working closely with the Latinx population within her own community and through various job positions in school and healthcare settings. These experiences have fueled her passion to advocate for the unique needs of Latinx individuals, particularly in increasing access to healthcare services. Currently, she is a Graduate Research Assistant for PODER Familiar, a study that tests the efficacy of a bilingual intervention designed to promote the health and well-being of Latinx caregivers of children with disabilities. She is interested in the development and implementation of culturally tailored interventions and hopes to address barriers that the Latinx community often faces.

Her research interests include exploring innovative approaches to improving healthcare access and outcomes, with a specific focus on the intersection of culture and occupational therapy practice. She is committed to advancing the field by conducting research that can enhance the quality of care provided to underserved communities. (ORCID: 0009-0002-5071-109X).

Claudia Sellmaier is an Associate Professor in the School of Social Work and Criminal Justice at the University of Washington, Tacoma. Her research focuses on economic opportunities and work–life fit for parents caring for children with disabilities, specifically the impact of work and community resources and the effects of discrimination and stigmatization. She also examines disability and disability justice in social work education. She uses both quantitative and qualitative methods and conducts international and intervention research (ORCID: 0000-0003-0062-2654).

Ana Slišković is a Full Professor at the Department of Psychology at the University of Zadar (Croatia). She graduated from the Faculty of Philosophy in Zadar in 2002 with a degree in Psychology. She received her master’s degree (2007) and doctorate (2010) from the Faculty of Philosophy at the University of Zagreb. Since 2002, she has been working at the Department of Psychology at the University of Zadar. She teaches several methodological courses in the undergraduate psychology program (Psychological Methodology 1 and 2, Qualitative Research Methods in Psychology). She teaches various other courses at different levels (Stress at Work in the Graduate Program in Psychology; Motivation, Work Behavior, and Well-being in the Postgraduate Program Leadership and Management of an Educational Institution; Organizational Psychology in the Graduate Program; and Organization in Shipping). In September 2021, she received the Rector’s Award for her many years of outstanding teaching achievements.

She has published about 50 scientific papers in national and international journals and scientific books and actively participated in a number of scientific conferences. Most of her papers deal with the topic of stress at work and the well-being and psychophysical health of workers in different work environments. Her current scientific interests relate to two specific areas. The first area is maritime psychology, where she has conducted several studies on the health, well-being, and motivation of seafarers; the motivation of maritime students to work in the maritime industry; and the well-being of partners and spouses of seafarers. Another area she is interested in is the challenges and stressors faced by parents of children with disabilities, with a particular interest in factors related to work and organization, that is, work–life balance. She recently led an institutional research project entitled “Well-being of Working Parents of Children with Disabilities” (ORCID: https://orcid.org/0000-0002-5621-648X).

Lisa M. Stewart is a Professor in the Department of Social Work at Cal State Monterey Bay. Her research focuses on family, work, and community support and challenges experienced by parents of children with mental health disabilities. Her current work, funded by the CDC and the National Center for Occupational Safety and Health, targets workplace health interventions aimed at promoting the health and well-being of parents of children with mental health disabilities. She is particularly interested in the use of the disclosure of a child’s health status by a parent of a child with a mental health disability to employers as a strategy for obtaining workplace flexibility and organizational support (ORCID: 0000-0001-5423-8901).

Yolanda Suarez-Balcazar, Ph.D., is a Professor in the Department of Occupational Therapy, Affiliate Faculty in the Department of Disability and Human Development, and Department of Psychology at the University of Illinois Chicago (UIC). Trained as a community psychologist, her research expands across several interrelated areas of race, culture, disability, and health that concentrate on understanding health disparities among immigrant families of children and youth with disabilities and designing culturally tailored interventions to promote health and well-being. Her scholarship follows a community-engagement and community-based participatory research approach. She has received funding for her research from the National Institute on Disability, Independent Living and Rehabilitation Research, NIH Office of Minority Health, and The Chicago Community Trust, among others. She is Co-PI on a federal grant studying the social determinants of health impacting Latinx children with disabilities and their families and designing culturally relevant health promotion interventions. She is also a Co-investigator on two federal grants promoting health literacy and cultural humility among healthcare providers and community health workers. She has published over 100 peer-reviewed articles in addition to several invited chapters and other pieces.

She is a Fellow of the American Psychological Association and past President of the Society for Community Research and Action (SCRA, APA, Division 27). She was the 2021 recipient of the Distinguished Alumna Award, University of Kansas, Department of Applied Behavioral Science, and a 2022–2023 University Scholar recipient at UIC (ORCID: 0000-0002-1963-3129).

Marina Vidaković is an Assistant Professor at the Department of Psychology at the University of Zadar (Croatia). She teaches several courses at the undergraduate as well as graduate studies at the University of Zadar (Psychology of Communication, Social Psychology, Psychology of Religion, Psychology of Groups and Intergroup Relations, History of Psychology).

Her work is focused on exploring challenges of parents of prematurely born children as well as parents of children with disabilities, and she has also participated in various competitive and institutional projects (both domestic and international). She is a regular reviewer for several Croatian and foreign journals. During her years of work at the Department of Psychology at the University of Zadar, she has taken part in numerous educational workshops, seminars, and summer schools. She has presented over 40 papers at domestic and international scientific-professional conferences. Since the beginning of her employment at the Department of Psychology (2007), she has been a permanent member of the organizational and program committees of the international scientific-professional conference “Psychology days” and has repeatedly participated in the organization of the Summer Academy for Neurodevelopmental Rehabilitation. Since December 2017, she has been the Head of the Premature Baby Parents Club (Zadar branch) providing daily support and counseling to parents of prematurely born children. In October 2019, she was appointed as the Head of the Student Counseling Center at the University of Zadar. She is a Member of the Coordination of the Ombudsperson for Persons with Disabilities for the area of higher education. She is the President of the Quality Committee of the Department of Psychology. She is a Collaborator on a scientific research project: “Identification of key factors for the implementation of educational inclusion of students with disabilities” (ORCID: https://orcid.org/0000-0002-1559-6826).

Lotta Vikström is a Professor of History; her scholarship in social history and historical demography is extensive (c. 25 years) having researched “common” people and those faced with various difficulties in life (e.g., unwed mothers, paupers, offenders, and disabled individuals). She has primarily based her studies on digitized parish register and statistical analysis. She is also interested in mixing methods and data sources to gain more knowledge (ORCID: 0000-0001-9042-9166).

Jocelyn S. Wikle, Ph.D., is an Assistant Professor of Family Studies in the School of Family Life at Brigham Young University. She earned a doctorate degree in Economics at the University of Texas at Austin in 2013, specializing in public finance and labor economics. Her research focuses on the causes and consequences of resource investments in children. She explores investments at the micro level from parents and the family context. This includes work on child characteristics such as disability, gender, birth order, and stage of development. Relatedly, her work explores contextual factors in families that relate to investments in children and social interactions of children. Another tranche of her research includes the study of investments in children at the macro level through policies and programs that impact children and their families (ORCID: 0000-0003-2112-5091).

Dana Yarbrough is the Associate Director of the Partnership for People with Disabilities, Virginia’s university center for excellence in developmental disabilities located at Virginia Commonwealth University (VCU). Among her many roles at VCU, she directs the Center for Family Involvement and its programs to support the leadership of diverse families of children with disabilities. She holds a master’s degree in special education secondary transition from The George Washington University and has over 30 years’ experience in designing and implementing family support initiatives at the national, state, and local levels. She brings to her work her wisdom and experiences as the mother of a young adult with intellectual, physical, and sensory disabilities; sister to siblings with mental illness; and daughter to a mother who lived over 14 years with Alzheimer’s disease (ORCID: 0009-0009-6711-2887).

For most of us, disability will inevitably impact us or those we love. Interest in the dynamics between disability and family relationships dates back to Greek mythology and the story of Hephaestus, the Greek god of fire, blacksmiths, and craftsmen. Hephaestus was the son of Hera, the queen of the gods, and Zeus, the king of the gods of Olympus. As the story goes, upon his birth, horrified by the sight of Hephaestus and his physical deformities, Hera threw him into the ocean from the top of Mount Olympus. Surviving the fall, Hephaestus is rescued by the goddess of water, Thetis, and raised on the island of Lemnos where he became a skilled craftsman and went on to design impressive inventions, weapons, and jewelry. Despite his hardships, Hephaestus garnered much respect and admiration from the other gods for his clever creations. He is often depicted with curved feet and portrayed high up on a wheeled chair or a chariot of his making which he used to maneuver around. Different versions of his complicated relationship with his mother have been characterized in various myths. According to one version, seeking vengeance against his mother, Hephaestus concocts an elaborate plan to humiliate her and make his return to Olympus. He constructs a majestic golden throne for Hera and tells her that it is a gift. But when she sits on the throne, she is trapped by invisible chains which no other god is able to free her from. In return for releasing his mother from her captive throne, he negotiates with Zeus to marry the stunning Aphrodite, the Greek goddess of beauty and love. Yet, despite his adoration for Aphrodite, Hephaestus’ relationship with his wife also proves to be arduous. Not thrilled with her arranged marriage to Hephaestus, Aphrodite often entertains other lovers and enters into a relationship with Ares, the Greek god of war. In another pivotal act of revenge, Hephaestus creates a trap to ensnare the love making couple in an unbreakable chain and shame them in front of the other gods, but the other gods just laughed at the sight of the entangled naked lovers. In these mythical stories, Hephaestus’s disability is often presented as both a source of struggle and strength, overshadowing the dynamics of his intimate and family relationships.

Many cultural stereotypes associated with disability can be traced back to different accounts of Hephaestus. The narrative surrounding his family interactions implies that they are fraught with conflict. His relationship with his mother is laced with negative emotions which range from scorn, resentment, and embarrassment to feelings of neglect, rejection, anger, and humiliation. His relationship with Aphrodite is colored by jealousy, suspicion, rejection, and betrayal. He is not warmly accepted or lovingly embraced by either woman, but rather he is seen as a burden and a barrier to overcome. Tropes such as these continue to play out in modern day depictions of disability within literature and popular culture, impacting our understanding of the experience of living with disability. Yet, it is important to recognize that disability is not understood or treated uniformly across cultures, and the experiences of families vary considerably across social class, race, ethnicity, and gender. Myths and stereotypes often oversimplify the complex realities of living with disability.

The purpose of this volume of Contemporary Perspectives in Family Research is to provide a broad examination of disability and the family. Families are impacted in a multitude of ways by disability throughout the life course. The new presence of a disability can lead to major shifts in the roles and responsibilities of family members and intimate partners. Frequently, family members, often women, play an essential role in the care of other family members who experience disability. This service can involve physical assistance, emotional support, advocacy, financial aid, or just adjustment to their lifestyles or routines to accommodate the disability. While support can be reciprocal, it can also place a great deal of stress on family members and cause strained relationships. In addition to the demands caused by role changes, individuals caring for a child, parent, or partner with a disability also may face guilt or blame, fear, anxiety, communication challenges, intimacy issues, financial strain, and social isolation among other issues. Disability can change the nature of relationships across and within generations, with older individuals caring for younger ones, younger members caring for older members, and, in some cases, siblings caring for other siblings. Ultimately, disability may affect those in spousal and intimate relationships, especially as couples age together and concerns related to physical and cognitive abilities become more problematic. The impact of disability can vary considerably depending on a variety of factors including the severity of the disability, the dynamics of the family, the coping mechanisms of individual family members, and the availability of support systems. Balancing work, household duties, personal needs, and caretaking responsibilities can be overwhelming. But caring for a person with a disability can also lead to a heightened sense of empowerment. Caretakers may experience hope, strength, growth, and resilience. Couples may feel stronger in the face of diversity as they overcome obstacles and adapt to change together. Families may become closer and more cohesive.

Across societies, there are numerous social factors that impact rates of disability as well as the experience of disability. Differences in cultural beliefs, access to healthcare and services, poverty and economic inequality, opportunities for education and employment, and differing legal frameworks will invariably impact the needs and ability of members of a society to provide care to their loved ones. Barriers to economic resources and opportunities mean that marginalized or disadvantaged groups are disproportionately affected by disability. Natural disasters as well as conflict, violence, and war in a society can also lead to increased rates of disability. Worldwide, the prevalence of disability is on the rise. Many societies have expanding populations of individuals with disability and chronic conditions, especially as the global population continues to age. Improvements in diagnostic technology also mean more individuals are being diagnosed and recognized as having a disability. Environmental factors like air and water pollution and more sedentary lifestyles and unhealthy diets can also lead to increased rates of disability. Clearly, disability and its related consequences have moved to the forefront of family concerns. In this volume of Contemporary Perspectives in Family Research, researchers from around the globe provide us with a more comprehensive understanding of how families are impacted by disability. The work presented here highlights the challenges, coping, resources, and resilience of families.

Caring for a child with a disability can be hard enough, but trying to coparent can complicate matters even more. In Chapter 1, “Coparenting a Child with Disabilities: Selected Determinants,” Monika Parchomiuk examines the process of coparenting a child with disabilities using “The Coparenting Relationship Scale” with 118 coparenting couples in Poland. Parental age, gender, and education and the age and gender of the child were also taken into consideration. While the gender and education of parents proved to be significant, their age did not play as great of a role in their perception of parental agreement or satisfaction with the division of labor. Understandably, the findings also indicate that children display less difficult behaviors when parents are able to coparent cooperatively and support each other’s efforts. As the author emphasizes, a better understanding of how parents of children with disabilities in coparenting relationships interact with one another, cope with stress, and share responsibilities can help school counselors, social workers, and psychologists in the process of developing plans of intervention and specialized support.

Having a sibling with a disability can affect a child in various ways, both positive and negative. The question of how parents of a disabled child divide up their time among siblings is addressed in Chapter 2, “Childhood Disabilities and Differential Parental Time Investments in Siblings.” In this chapter, Jocelyn S. Wikle, Ashley Forbush, and Alexander C. Jensen utilize a longitudinal sample from the nationally representative American Time Use Survey (2008–2019) to analyze parental time investment in disabled children as compared to children without disabilities. The results indicate that nondisabled youth may not be getting the same kind of attention that their siblings with disabilities are receiving. This disparity can lead to jealousy, resentment, and difficulties for nondisabled siblings such as poor educational outcomes. The authors illuminate how negative consequences can be mitigated by providing nondisabled siblings with a greater understanding of the reasons for the differences in parental time investment.

The experience of role reversal between parents and children in at-risk families is explored in Chapter 3, “A Qualitative Analysis of the Experience of Parentification.” Barbara Chojnacka utilizes the autobiographical narrative interview method to gain better insight into the process parentification, whereby the child takes on the roles and responsibilities of the parent, often due to the incapacity or unavailability of the parent. In some cases, this might mean children making significant decisions that affect the household or taking on responsibility for instrumental tasks. This could include performing household chores like laundry, cooking, cleaning, and caring for other family members. In other cases, this might also involve children taking on expressive functions or an emotional support role for the parent. Findings from interview data with 17 female and 18 male participants reveal a pattern or processual model of parentified childhood. In other words, parentification does not just happen overnight. As illustrated by Chojnacka, this role reversal is a complex, multi-stage process which can lead to negative consequences for family dynamics and relationships.

To better understand the way chronic illness shapes the lived experiences of individuals and their families, Allison Jendry James employs the autoethnographic and social constructionist approach in Chapter 4, “What ‘Normal’ Means to My Family and I: Life as a Young, Chronically Ill Person.” Reflecting on her own experience and daily encounters, the author provides readers with a glimpse into the day-to-day difficulties of living with chronic illness and how it impacts her marriage and family relationships. She delves into various emotions and considers how these feelings contribute to her identity. This introspection also involves self-reflection about the influence of her social location and a discussion about varying intersecting social statuses that may influence the experience of stigma. James concludes by advocating for more research that explores the various intricate ways chronic illness impacts the daily living and functioning of families.

Individuals with disabilities are not the only ones who may face stigma. Parents caring for a child with a disability like a mental health or a behavioral condition may contend with heightened judgment in the workplace due to the invisibility of the disability as well as the public stigma associated with mental illness in American society. In Chapter 5, “Navigating Stigma and Discrimination at Work While Parenting a Child with a Mental Health Disability,” Lisa M. Stewart, Claudia Sellmaier, Marin Henderson-Posther, Jessica Lukefahr, and Eileen M. Brennan conduct a literature review of 26 research articles and 12 websites dealing with the subject mental health stigma and discrimination in the workplace experienced by parents of a child with a mental health disability. While research on the subject is limited, their review reveals the widespread and multifaceted occurrence of stigma and discrimination. The authors also highlight the dearth of resources that are available to combat the potential stigma and discrimination encountered by parents. They conclude by discussing opportunities for implementing organizational strategies and policy reform to help create more supportive and family-friendly work environments.

Disability can affect family planning in a variety of ways. Fredinah Namatovu, Erling Häggström Gunfridsson, Johan Junkka, and Lotta Vikström evaluate the relationship between the use of disability benefits and the likelihood of becoming a parent in Chapter 6, “The Dynamic Association Between Disability and Parenthood in Sweden.” Using longitudinal data from the Swedish national registers with a sample of over 440,000 individuals, the authors use descriptive analysis, heatmaps, and multinomial logistic regression analysis to demonstrate a bidirectional relationship between the age at starting to receive disability benefits and the age of having a first child. More specifically, receiving disability benefits at a young age appears to significantly reduce the chances of becoming a parent, while becoming a parent at a young age appears to increase the likelihood of receiving disability benefits. These results demonstrate there is a dynamic interplay between disability and parenthood.

Language, cultural, and economic barriers can make navigating the healthcare system, finding appropriate services and interventions, and advocating for children with disabilities a significant challenge. For Latinx, the elevated risk or experience of racism and discrimination can also discourage families from seeking necessary services. In Chapter 7, “Latinx Families of Children with Disabilities: Challenges, Supports, and Empowerment Interventions,” Yolanda Suarez-Balcazar, Isabella Rosas, Mariela Saenz, Janelly Macias-Martinez, and Sandy Magaña delve into the unique struggles faced by Latinx families of children with disabilities. In addition to describing some of the common obstacles that are encountered, the authors provide context about the support systems and available resources. Various empowerment-focused interventions intended to improve advocacy skills and enhance the health and well-being of Latinx families are also highlighted. The authors summarize their work by making policy suggestions and recommendations for future research and practice.

Annaliese Grant and Rachel Litchman tackle the issue of social class as it relates to disability care in Chapter 8, “Caring Through It: Mothers’ and Daughters’ Perspectives on Disability and Interdependence in Financially Struggling White Families.” Intergenerational poverty, poor or dangerous living conditions, occupational hazards, limited access to healthcare, and chronic stress are just some of the different factors that contribute to higher rates of disability among low-income groups. Disability can also create significant additional expenses for families which can lead to even greater financial strain. Based on 31 in-depth interviews with mothers and daughters across the United States, Grant and Litchman’s research takes a look at how financial struggles and disability care are intertwined and how this entanglement often necessitates cooperation and interdependence between mothers and daughters. Unlike in families with more resources for support, mothers and daughters in financially struggling families may have no other choice but to rely on each other.

Attention is devoted to coping strategies and the influence of social support on parents caring for children with severe disabilities in Chapter 9, “The Well-Being of Croatian Parent Caregivers: Testing the Role of Cognitive Emotion Regulation Strategies and Social Support.” In this chapter, Jelena Ombla, Marina Vidaković, and Ana Slišković collect and analyze online survey data from 210 Croatian parents of children and adults with disabilities. In addition to assessing the mental health and well-being of caregivers, the researchers addressed life satisfaction, parental stress, social support, and cognitive emotion regulation strategies. Consistent with past research, the findings illustrate the potential remedying effects of social support and positive refocusing for parental well-being, life satisfaction, and the experience of stress. Considering the various demands faced by parent caregivers, learning strategies for emotional regulation and having adequate social support appears to be crucial.

In Chapter 10, “Improving Family Resilience through Parent to Parent Support: A Pilot Study on Culturally and Linguistically Diverse Families of Children with Disabilities,” Yali Pang and Dana Yarbrough also unpack the influence of social support and investigate ways to support diverse parents of children with disabilities. In this pilot study, the researchers paired two cultural brokers with six different parents to determine the efficacy of evidence-based peer support practices that have been developed by Parent to Parent USA. Cultural brokers can act as an intermediary between different cultural groups, facilitate a mutual understanding, bridge cultural differences, and provide advocacy, support, education, training, and access to other resources and connections. This chapter is focused on the observations of the cultural brokers collected through interviews and surveys conducted after daily interactions with the assigned parents over a period of three months. The results suggest there is a great deal of value in promoting the use of parent to parent support in culturally and linguistically diverse families of children with disabilities.

In Chapter 11, “Disability Is a Family Affair,” Rhoda Olkin emphasizes the intertwined nature of individual disability and the family and examines the responses of family to the needs of those with disabilities. She focuses upon the role of clinicians and practitioners, who need to be keenly aware of how their care choices and recommendations can affect not only the disabled person, but may have substantial consequences for the rest of the family. Disability, quite simply, affects everyone within the family, and the delicate balance of maintaining the well-being of the individual and the well-being of the family is often difficult to achieve. She also discusses Medical Family Therapy, and the ways in which it can aid in our understanding of the contextual and environmental factors which can affect the functioning of families, along with their capacity to properly aid and assist those with disabilities.

The aim of this volume of Contemporary Perspectives in Family Research was to examine how disability affects family processes and relationship dynamics. Around the world, as demographic and societal shifts occur and life expectancy continues to rise, we can expect to see more disability and a greater need for healthcare and caregiving services. Families will likely incur additional financial, physical, and emotional costs, particularly if the family member with disability is unable to work or faces education or employment barriers. Addressing obstacles, promoting social inclusion, and enhancing access to resources can help families cope with potential challenges and maintain healthy relationships. An enhanced understanding of disability within the family context can lead to new directions for research and new ways of assisting individuals with disability and their family members. The studies included in this volume demonstrate that disability has far and wide-reaching affects, not just impacting those with disability but the whole family system. We extend our most sincere gratitude to all of the authors for their important contributions to this volume as well as the anonymous reviewers who provided thoughtful and constructive reviews.

Patricia Neff Claster

Sampson Lee Blair