Exploring Mothers' Initial Discovery Experiences of Developmental Delay Or Disability in Their Young Children

Purpose:

There is consensus in the literature that the timely introduction of comprehensive child and family centered intervention can improve developmental progress for young children with delays or disabilities. The purpose of this qualitative study was to expand the scarce information available on how mothers first observe early development, assess potential problems, and then come to recognize their concerns.  Since mothers are often primary caregivers, attention to their expression of initial concern is critical to effective developmental monitoring. Findings will add to a common understanding between mothers and professionals in health and education that may lead to earlier detection. In-depth knowledge about mothers’ perspectives on the discovery process can help social workers to promote identification of developmental disability in young children and facilitate service plans.

Methods/Sample:

A phenomenological design was chosen to capture the complexity of meaning within the shared experience of discovery. The sample consists of mothers of children birth to five with confirmed developmental delays or disabilities. Participants responded to recruitment flyers posted in early childhood programs or distributed by independent service providers known to the researcher. Data collection included in-person interviews and a follow-up e-mail contact with 18 mothers living in New York, Massachusetts, Texas, and Connecticut. An inductive approach was used to code the data and categorize meaning units into themes. Ongoing comparative thematic analysis led to an outline of the process surrounding mothers’ discovery of their children’s developmental issues.

 Results:

The data suggest five major themes unfolding along a discovery timeline: For the majority of the mothers, instinct and close observation of their child’s behavior led to an initial AWARENESS of developmental concerns. IDENTIFICATION of delay emerged as the mothers pieced together feedback from informal social networks and formal evaluations. Next their REACTION and responses to a growing recognition of delay or disability prompted advocacy efforts with service delivery representatives in the NEGOTIATION phase.  Lastly the mothers considered the meaning of developmental challenges in an appraisal of motherhood and expectation for the future.

Data analysis highlighted the interweaving of mothers’ intuitive conviction with their accounts of impressions from family, social and professional contacts. The core concept that mothers appear to discover developmental issues from this blend of ‘insider’ and ‘outsider’ perspectives is evident throughout the timeline.

Conclusions and Implications:

The mothers’ stories revealed discovery of delay or disability in their young children to be an often puzzling and open-ended process.  Mothers stressed the need for parents to recognize themselves as expert in their child’s development, and to be persistent in voicing concerns to pediatricians and early childhood care providers.

Study results address a gap in social work literature on the first-hand perspective of mothers of children with disabilities prior to formal evaluation. Learning how mothers perceive early developmental problems may minimize the lag between concern and intervention, provide insight into service access, and aid social workers who advocate for social policies that expand resources for families with children with disabilities.