Finding my own voice Families' Voices... Sent to 500 family members - PowerPoint PPT Presentation

Finding my own voice

Families' Voices... • Sent to 500 family members  Personal Info  Helpfulness of the Professionals  Support role of the SCDT • Difficult and distressing to participate • >20% response rate

General Findings • Inconsistency of Care • Style of Communication • Feelings of Abandonment • Lack of listening to Families • Value to Families of Honesty, Empathy and Openness

Specific Findings • Funeral Directors – 'most helpful' • Police – Families respected their difficult role • Health Professionals - Did not always listen / follow up Families felt abandoned • Hospital Paediatrician – Role unclear to many families, more clarity required in future

‘Listening’ to families Professionals who were deemed most helpful were: • Honest and open • Clear with information • Not in a hurry

‘Listening’ to families Professionals who were least helpful were: • Unable to deal with the situation (Inexperience, Ill equipped) • Didn’t follow up in a timely manner • Lacked Empathy

Collective voices Scottish Cot Death Trust • Speak at national conferences of professional groups • Strengthen support services to families • Produce sibling resource

Collective voices Families Professionals SCDT Policies

Collective voices

The future…