Graduation Year

2013

Document Type

Dissertation

Degree

D.P.H.

Degree Granting Department

Community and Family Health

Major Professor

Russell S. Kirby

Keywords

Developmental Disabilities, Developmental Screening, Early Childhood

Abstract

The importance of early recognition and intervention for developmental delays is increasingly acknowledged, yet high rates of under-enrollment and 1-3 year delays in entry to the public early intervention system continue. Much research has examined developmental screening in health and child care settings, but less well understood is what prompts parents to identify problems and seek help for their children. This mixed methods study rooted in the Health Belief Model and Social Support Theory examined child, parent, family, and community level factors related to parent recognition (awareness and concern) and response (help-seeking and enrollment in services), including formal and informal sources of appraisal, informational, instrumental, and emotional support.

Phase 1 examined responses from 27,566 parents of children ages 0-5 using the 2007 NSCH to quantify the type and number of parent concerns regarding their child's development in eight developmental domains, rates of enrollment in public intervention or private therapy, and factors associated with increased or decreased likelihood of concern or services enrollment. Regression analyses indicated that the likelihood of parent developmental concern and enrollment in public or private services differed by: child age, sex, health status, and type of developmental delay; parent and family characteristics (e.g. maternal race/primary language, reading to the child, etc.); pediatrician inquiry about concerns; insurance type; and child care type. Maternal age, education, marital status, and family structure and income were controlled for in all three models, but did not consistently contribute to likelihood of concern or services across outcomes.

Phase 2 of the study utilized purposive, convenience, quota sampling via community agencies to invite 6 Spanish and 17 English speaking parents of high and low socioeconomic status to share their experiences in recognizing and responding to developmental concerns in their children (ages 2 weeks-4 ½ years) via 18 interviews and 2 focus groups. Participants also completed demographic, developmental status (PEDS), and knowledge of infant/child development (KIDI) questionnaires. About half of participants reported behavior (54%), social (50%), or speech concerns (54%); over a third had academic (38%), receptive language (42%), or self-help concerns (33%); and roughly 15% reported fine motor (17%) or gross motor (13%) concerns. Parents described in detail observations that first sparked developmental concerns, their decision-making processes in help-seeking and timelines for services; types and sources of social support; and facilitators and barriers related to recognition and help-seeking. The average score on the infant questionnaire was 50% correct and 65% on the prekindergarten questionnaire (range 32-91%).

The results of this study describe child (sex, age, health status, type of delay), parent (age, education, race, ethnicity, home language, perception of susceptibility and severity of child delay), family (siblings, income, reading to the child, relative child care, social support), and community (pediatric practices, source of medical care, insurance, community support and referral coordination)factors related to early identification of developmental delays and access to public early intervention and private therapy services. Findings can be used to inform and improve community education, developmental screening, and Child Find outreach efforts. This study also contributes to our understanding of how parents interface with early intervention systems and both formal and informal parenting supports in the community, and identifies triggers for parental recognition and help-seeking for developmental delays and preferred entry points and pathways to assessment services. Recommendations include additional research on the causes, risk factors, co-morbidities, onset, and stability of diagnosis for developmental delays; continued development and universal implementation of valid and reliable screening and assessment tools, particularly for infants and toddlers; education campaigns to increase provider, parent, and public knowledge about developmental expectations, the importance of early intervention, and intervention options; further expansion of free, culturally appropriate programs to support child development for children with and without developmental delays and to strengthen formal and informal social supports for parents; improved referral coordination and timelines; and ongoing evaluation research to further demonstrate the efficacy of a variety of intervention service delivery models.

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