The Price of Love: Understanding the Financial and Psychosocial Costs of Caring for Children with Medical Complexities

Chantal Krantz; Michele Hynes; Amélie DesLauriers; Lillian L Kitcher; Teresa MacMillan; Diane Paradis; Susan Mendelsohn; Susan Curry

doi:10.12927/hcq.2024.27257

The Price of Love: Understanding the Financial and Psychosocial Costs of Caring for Children with Medical Complexities

Healthc Q. 2024 Jan;26(4):24-30. doi: 10.12927/hcq.2024.27257.

Authors

Chantal Krantz¹, Michele Hynes², Amélie DesLauriers³, Lillian L Kitcher⁴, Teresa MacMillan⁵, Diane Paradis⁶, Susan Mendelsohn⁷, Susan Curry⁸

Affiliations

¹ A manager at the Complex Care Program Department of Development and Rehabilitation in the Children's Hospital of Eastern Ontario (CHEO) in Ottawa, ON. She has 30 years of experience working in pediatrics and has a keen interest in integrated healthcare systems to improve health outcomes for children, youth and their families.
² The director of Children and Family Services, Pinecrest-Queensway Community Health Centre in Ottawa, ON. Michele is a progressive and initiative program director with 30 years of management experience in the community health sector.
³ A registered social worker with the Complex Care Program in CHEO, Ottawa, ON. Amélie has 15 years of experience in social work supporting families, children and youth and developing/implementing new initiatives to better respond to their needs.
⁴ A parent navigator with the Complex Care Navigator Program at Pinecrest-Queensway Community Health Centre in Ottawa, ON. Lillian is a mother to a 12-year-old with medical complexities.
⁵ A former parent navigator with the Complex Care Navigator Program at Pinecrest-Queensway Community Health Centre in Ottawa, ON. Teresa helped establish the role of the parent navigator with the Complex Care Navigator Program. A part of her role was to offer peer-to-peer support. She has lived experience with having her own child who is medically complex.
⁶ A registered social worker with the Complex Care Program at CHEO in Ottawa, ON. Diane is a well-established, trauma-informed social worker with over 20 years of experience and is trained in eye movement desensitization and reprocessing.
⁷ The director of Development and Rehabilitation at CHEO in Ottawa, ON. Susan was trained as a speech-language pathologist and has over 30 years of clinical and leadership experience in the child development and rehabilitation sector.
⁸ The research coordinator in Development and Rehabilitation and the research coordinator/program evaluator for the Complex Care Navigator Program at CHEO in Ottawa, ON. Susan has over 25 years of experience in health research.

PMID: 38482645
DOI: 10.12927/hcq.2024.27257

Abstract

Parents of children with medical complexities (CMCs) report significant challenges affecting their financial, emotional and social well-being in relation to caring for their child's medical needs. The Complex Care Navigator Program was designed to provide social, emotional and economic support to parents of CMCs. This paper describes the results and outcomes of the program and the challenges experienced during the evaluation process. Overall, results suggest that the program had a positive impact on the parents' psychosocial functioning and social connections. The results demonstrate the importance of providing early screening, psychosocial intervention and peer support.

MeSH terms

Child
Humans
Love*
Parents* / psychology