Impact of caring for children with medical complexity on parents’ employment and time

ABSTRACT

Objectives: This study examined parental care of children with medical complexity (CMC) in terms of time spent providing care and impacts on employment and career.

Methods: We recruited caregivers of 153 CMC in a tertiary center complex care program to participate in a cross-sectional mail survey.

Results: Among 95 respondents (62% of eligible), 75% of primary caregivers and 53% of spouses experienced employment losses and one-third experienced negative career outcomes attributed to care for CMC. On weekdays during the day (6 a.m.–6 p.m.), 55% of caregivers provided care for 8 hours or more. On weekday evenings and nights, half of caregivers provided care for at least 6 hours, including 53% of caregivers who provided care from midnight to 6 a.m.; these proportions were higher on weekends. Compared to employed caregivers, non-employed caregivers reported spending more time providing care on weekdays (P = .001), but less time providing care on weekend evenings (P = .019). On weekend days and weekday evenings/nights, employment was not associated with duration of care.

Conclusions: Caring for CMC frequently impacts employment and careers of caregivers and spouses. Employed and non-employed caregivers invest substantial time in care. Research on CMC should include indirect costs of family care in terms of employment, income, and time.

ABSTRACTO

Objetivos: Este estudio examinó el cuidado que los padres (y otros cuidadores) proveen para sus niños con complejidad médica (NMC) en términos tanto del tiempo dedicado al cuidado de los niños, como del impacto en el empleo y en la carrera de los padres.

Métodos: Se reclutaron 153 padres y otros proveedores principales de cuidado para NCM, a través de un programa de atención para niños con necesidades médicas complejas en un centro terciario de salud. Los padres respondieron a una encuesta por correo.

Resultados: De 95 encuestados (62% de elegibles), el 75% de los cuidadores primarios y el 53% de sus cónyuges sufrieron pérdidas de empleo y un tercio experimentó consecuencias negativas para sus carreras debido al cuidado de NMC. Durante días hábiles (lunes a viernes durante el día, 6 a.m.–6 p.m.), el 55% de los cuidadores atendió al niño ocho horas o más. En las tardes y noches durante días hábiles, la mitad de los cuidadores proporcionaron atención durante al menos seis horas; 53% de los cuidadores proporcionaron atención desde la medianoche hasta las 6 a.m.; esta proporción fue aún mayor durante los fines de semana. En comparación con los cuidadores empleados, los cuidadores no empleados reportaron pasar más tiempo dedicados al cuidado de NCM de lunes a viernes (P = 0.001), pero menos tiempo dedicado al cuidado de NCM en las tardes del fin de semana (P = .019). En los días del fin de semana y las tardes/noches durante días hábiles, no se observó diferencia entre los cuidadores con empleo y aquellos sin empleo.

Conclusiones: El cuidado de NMC frecuentemente afecta el empleo y la carrera de los cuidadores y de sus cónyuges. Tanto los cuidadores empleados como los no empleados invierten tiempo considerable en el cuidado de NCM. En el futuro, la investigación sobre NMC debe incluir los costos indirectos del cuidado de NCM para la familia, en términos de empleo, ingreso y tiempo.

KEYWORDS:

• Children with medical complexity
• special needs
• chronic illness/conditions
• family impact
• family caregivers

PALABRAS CLAVE:

• niños con complejidad médica
• necesidades especiales
• enfermedad crónica/condiciones crónicas
• el impacto en la familia
• los cuidadores familiares

Acknowledgments

The parent survey for this study was based on the survey developed for the project ‘Health Literacy and Children with Special Needs’ (Acevedo-Garcia, PI, Eunice Kennedy Shriver National Institute of Child Health and Human Development, 5 R03 HD050403-02). We gratefully acknowledge our colleagues Ms. Holly Colby, Ms. Lisa Jennings, Dr Beth McManus, and Dr Alex Okun for their substantial contributions to various phases of this study, and our colleagues at the University of Wisconsin Survey Center for their excellent assistance with survey development and administration. We are especially grateful to the families for their participation in this research.

Disclosure statement

The authors have no financial relationships or conflicts of interest relevant to this article to disclose.

Notes on contributors

Carmen Gomez Mandic, ScD, MPH, is Associate Director of Research and Evaluation at the Marian Wright Edelman Institute at the San Francisco State University. Postal address: 1600 Holloway Ave., HSS 257, San Francisco, CA 94132. Telephone: [phone]. Email: [email protected]

Sarah Johaningsmeir, BA, is Clinical Research Coordinator II in the Special Needs Program at the Children’s Hospital of Wisconsin. Postal address: 999 N. 92^nd St., MS C350, Milwaukee, WI 53226 Telephone: [phone]. Email: [email protected]

Timothy E. Corden, MD, is Chief Medical Officer, Bureau of Community Health Promotion, and Chief Epidemiologist, Maternal Child Health Program, Division of Public Health, State of Wisconsin; Adjunct Professor of Pediatrics, Medical College of Wisconsin and Department of Population Health Sciences at the University of Wisconsin School of Medicine and Public Health. Postal address: Division of Public Health, 1 W. Wilson St., Rm. 218, Madison, WI 53701. Telephone: [phone]. Email: [email protected]

Alison Earle, Ph.D., MPP, is Senior Scientist at the Institute for Child, Youth and Family Policy at The Heller School for Social Policy and Management, Brandeis University. Postal address: Heller-Brown Building, 415 South St., MS 035, Waltham, MA 02454. Telephone: [phone]. Email: [email protected]

Dolores Acevedo-Garcia, Ph.D., MPA-URP, is the Samuel F. and Rose B. Gingold Professor of Human Development and Social Policy; Director of the Institute for Child, Youth and Family Policy at The Heller School for Social Policy and Management, Brandeis University. Postal address: Heller-Brown Building, 415 South St., MS 035, Waltham, MA 02454. Telephone: [phone]. Email: [email protected]

John B. Gordon, MD, is Medical Director of the Special Needs Program of the Children's Hospital of Wisconsin; Professor of Pediatrics and Chief of the Special Needs Section at the Medical College of Wisconsin. Postal address: 999 N. 92^nd St., MS C350, Milwaukee, WI 53226. Telephone: [phone]. Email: [email protected]

Additional information

Funding

This work was supported by a grant from the Robert Wood Johnson Foundation Health and Society Scholars Program at the University of Wisconsin-Madison.