Brenda T. Fenton, PhD¹, Denise Elizabeth Stevens, PhD¹, and Martha Okafor, PHC, MA, CSM, MPA². (1) MATRIX Public Health Consultants, Inc, 85 Willow Street, Suite 3, New Haven, CT 06511, 203-787-4700, fenton@matrixphc.com, (2) Bureau of Community Health, Family Health Division, Connecticut Department of Public Health, 410 Capitol Avenue, MS#11FHD, P.O. Box 340308, Hartford, CT 06134

Children with special health care needs (CSHCN) experience a diverse array of conditions that affect multiple body systems. Many require round-the-clock care, which is most often provided by a parent or relative caregiver. A recent statewide needs assessment examined the impact of CSHCN on their families. In addition to a deleterious effect on the primary caregiver’s health, we found a negative impact on other family members. Many participants reported that caring for their child with special health care needs adversely affected their relationship with their partner. More than half of parents reported that other children in the household did not receive the attention they needed. A significant proportion of parents had to leave the workforce to care for their CSHCN. When the areas of potential impact on the family were examined simultaneously, very few caregivers with additional children reported no impact on themselves/their family. In fact, a small but important proportion of families reported that caring for a CSHCN negatively impacted all of the measured personal/interpersonal factors. Many families felt that their primary care provider did not address the effect of the child’s condition on their family and did not identify support services. At the end of this presentation, the participant will be able to 1) identify areas of potential impact on families associated with caring for CSHCN; 2) discuss action steps to reduce this impact; and 3) articulate ways to increase provider awareness and action.

Learning Objectives: The participants will be able to

• identify areas of potential impact on a family associated with caring for a CSHCN;
• discuss action steps to reduce this impact; and
• articulate ways to increase provider awareness and action.

Keywords: Children With Special Needs, Quality of Life

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.