Included but isolated: early intervention programmes provision for children and families with chronic respiratory support needs

Purpose To measure enrolment of children with mechanical respiratory support needs within the Massachusetts early intervention programmes (EIP) and describe challenges in execution of individual family service plans (IFSPs). Methods Mixed methods provided a complementary assessment. Quantitative data were collected in 2005 from the Commonwealth of Massachusetts EIP administrative database as part of a cross-sectional state census. Qualitative data were retrieved from EIP regional coordinators in a key informant focus group. Descriptive statistics were used for quantitative survey data. Audio-recordings were transcribed verbatim and a qualitative, thematic analysis was undertaken. Results Four hundred and eighty children requiring mechanical respiratory support at the time of EIP enrolment were identified between 1 July 1997 and 1 January 2005. Focus group analysis revealed themes including: (1) barriers to community transition; (2) community expertise and training; (3) interface with medical providers; and (4) the role of web-based resources. Isolation of families emerged as a recurrent and resounding concept, relating to all of the themes. Conclusions Findings support the assumption that implementation of IFSPs for the cohort of children with chronic mechanical respiratory support needs in EIPs is challenging. Barriers reflect inconsistent care coordination and practical encumbrances, contributing to the physical and social isolation of these children and their families.