Examining In-Home Care Needs and Work Responsibilities for Parents with Children with A Rare Trisomy Condition

Abstract

Balancing in-home care needs and work responsibilities can present many challenges for families. This can be especially true with a family member with a disability. Mothers with children with severe disabilities are often not able to continue working in the job they held before their children’s birth or had hoped to attain after becoming a parent. The present study explores parent perspectives related to in-home care needs and work responsibilities for their child with a rare trisomy condition, themselves, and their spouses. Results describe the interplay of children’s daily caregiving needs, time management, mothers’ change in work status, and spouse’s work outside the home. Daily caregiving largely contributed to mothers not working outside of the home due to their children’s basic and medically related needs as well as a lack of suitable caregivers. In addition, parents in this study often had to reduce work hours or leave the workforce to care for their child. A call for additional research is offered coupled with implications for service providers working with families with a member with a rare trisomy condition.

Keywords:

• Trisomy
• care needs
• medical caregiving
• work responsibilities

Additional information

Notes on contributors

Deborah Bruns

Correspondence to: Deborah Bruns, Department of Educational Psychology and Special Education, Southern Illinois University Carbondale, IL 62901, USA. Email: [email protected]

Deborah A. Bruns, Ph.D., Associate Professor, Southern Illinois University Carbondale. Carly Schrey is an Undergraduate student at Southern Illinois University Carbondale.

Carly Schrey

Correspondence to: Deborah Bruns, Department of Educational Psychology and Special Education, Southern Illinois University Carbondale, IL 62901, USA. Email: [email protected]

Deborah A. Bruns, Ph.D., Associate Professor, Southern Illinois University Carbondale. Carly Schrey is an Undergraduate student at Southern Illinois University Carbondale.