The best possible start: A qualitative study on the experiences of parents of young children with or at risk for fetal alcohol spectrum disorders
| Autor: | Tracy Jirikowic, Kathryn Yorkston, Heather Carmichael Olson, Misty Pruner |
|---|---|
| Rok vydání: | 2020 |
| Předmět: |
Adult
Male Parents Patient Transfer Washington 030506 rehabilitation Adolescent Population Health Services Accessibility Developmental psychology Young Adult 03 medical and health sciences Respite care Intervention (counseling) Early Intervention Educational Developmental and Educational Psychology Humans 0501 psychology and cognitive sciences Child education Qualitative Research Quality of Health Care education.field_of_study 05 social sciences Infant Social Support Focus Groups Middle Aged Child development Focus group Clinical Psychology Fetal Alcohol Spectrum Disorders Child Preschool Life course approach Female Basic needs Respite Care 0305 other medical science Psychology Needs Assessment 050104 developmental & child psychology Qualitative research |
| Zdroj: | Research in Developmental Disabilities. 97:103558 |
| ISSN: | 0891-4222 |
| Popis: | Background The developmental outcomes and life course trajectories of young children with or at-risk for fetal alcohol spectrum disorders (FASD) can be optimized when individual and family needs are identified early and met with family-centered early intervention (EI) services. However, little is known about access to and quality of EI services with this high-needs population. Method Twenty-five biological or adoptive parents of children with or at high risk for FASD, living in the greater area of Seattle, Washington participated in this qualitative study. Three focus groups were conducted using a semi-structured interview guide. Participants described their experience with EI, as well as other supports and challenges faced in their child's first three years of life. Interviews were audio recorded, transcribed verbatim and coded using phenomenological methods. Themes that were consistent across participant groups emerged from the data, as well as themes that showed differences among participant experiences. Results Common EI supports and needs between biological and adoptive parent groups were identified. In addition, perspectives and needs unique to each parent group were revealed. Themes were identified and organized into three categories: (1) child needs; (2) parent needs and priorities; and (3) EI capacity. When parents talked about their child's cognitive, physical, communication or adaptive development, they all discussed how EI was meeting those needs. In contrast, when parents expressed concern for their child's social-emotional development, a description of how EI was supporting these needs was missing from the conversation. Parents appreciated when EI providers were truthful, provided anticipatory guidance, and connected them with supports for their own social-emotional well-being. Yet there were unmet needs for respite care, and parents expressed that support for basic needs related to child or family survival was not consistently recognized as a top priority for families. This high-risk group of young children and their parents also encountered a multitude of transitions in their child's early years and later. Parents wanted more support navigating these transitions as they entered or moved through different systems of care. Conclusions Parents appreciated and endorsed the importance of EI with its provision of individualized, family-centered supports and resources. Examination of the gaps and unmet needs that are common and distinct underscore the importance of an FASD-informed approach to EI. Study findings provide insight into areas for which EI enhancements could be developed in order to tailor supports for the complex needs of this diverse population of children and parents. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
|
Full Text from ScienceDirect