A qualitative analysis of parental coping with an early diagnosis of hearing loss in Ireland

The recent implementation of Universal Neonatal Hearing Screening (UNHS) in all 19 maternity hospitals across Ireland has precipitated early identification of paediatric hearing loss in an Irish context. This qualitative, grounded theory study centres on the issue of parental coping as families receive and respond to (what is typically) an unexpected diagnosis of hearing loss in their newborn baby. Parental wellbeing is of particular concern as the diagnosis occurs in the context of recovery from birth and at a time when the parent-child relationship is being established. As the vast majority of children with a hearing loss are born into hearing families with no prior history of deafness, parents generally have had little exposure to childhood hearing loss and often experience acute emotional vulnerability as they respond to the diagnosis. The researcher conducted in-depth interviews primarily with parents (and to a lesser extent with professionals), as well as a follow-up postal questionnaire for parents. Through a grounded theory analysis of data, the researcher subsequently fashioned a four-stage model depicting the parental journey of receiving and coping with a diagnosis. The four stages (entitled Anticipating, Confirming, Adjusting and Normalising) are differentiated by the chronology of service intervention and defined by the overarching parental experience. Far from representing a homogenous trajectory, this four-stage model is multifaceted and captures a wide diversity of parental experiences ranging from acute distress to resilient hopefulness

Can population-level variation in early childhood development be measured in a manner that supports service planning and intervention?

Background: The Early Development Instrument (EDI) is a population-level measure of five developmental domains at school-entry age. The overall aim of this thesis was to explore the potential of the EDI as an indicator of early development in Ireland. Methods: A cross-sectional study was conducted in 47 primary schools in 2011 using the EDI and a linked parental questionnaire. EDI (teacher completed) scores were calculated for 1,344 children in their first year of full-time education. Those scoring in the lowest 10% of the sample population in one or more domains were deemed to be 'developmentally vulnerable'. Scores were correlated with contextual data from the parental questionnaire and with indicators of area and school-level deprivation. Rasch analysis was used to determine the validity of the EDI. Results: Over one quarter (27.5%) of all children in the study were developmentally vulnerable. Individual characteristics associated with increased risk of vulnerability were being male; under 5 years old; and having English as a second language. Adjusted for these demographics, low birth weight, poor parent/child interaction and mother’s lower level of education showed the most significant odds ratios for developmental vulnerability. Vulnerability did not follow the area-level deprivation gradient as measured by a composite index of material deprivation. Children considered by the teacher to be in need of assessment also had lower scores, which were not significantly different from those of children with a clinical diagnosis of special needs. all domains showed at least reasonable fit to the Rasch model supporting the validity of the instrument. However, there was a need for further refinement of the instrument in the Irish context. Conclusion: This thesis provides a unique snapshot of early development in Ireland. The EDI and linked parental questionnaires are promising indicators of the extent, distribution and determinants of developmental vulnerability.

Obstetric mode of delivery and child psychological development

Background/aims: Objective of the current thesis is to investigate the potential impact of birth by Caesarean section (CS) on child psychological development, including autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), behavioural difficulties and school performance. Structure/methods: Published literature to date on birth by CS, ASD and ADHD was reviewed (Chapter 2). Data from the UK Millennium Cohort Study (MCS) were analysed to determine the association between CS and ASD, ADHD and parent-reported behavioural difficulties (Chapter 3). The Swedish National Registers were used to further assess the association with ASD, ADHD and school performance (Chapters 4-6). Results: In the review, children born by CS were 23% more likely to be diagnosed with ASD after controlling for potential confounders. Only two studies reported adjusted estimates on the association between birth by CS and ADHD, results were conflicting and limited. CS was not associated with ASD, ADHD or behavioural difficulties in the UK MCS. In the Swedish National Registers, children born by CS were more likely to be diagnosed with ASD or ADHD. The association with elective CS did not persist when compared amongst siblings. There was little evidence of an association between birth by elective CS and poor school performance. Children born by elective CS had slight reduction in school performance. Conclusions: The lack of association with the elective CS in the sibling design studies indicates that the association in the population is most probably due to confounding. A small but significant association was found between birth by CS and school performance. However, the effect may have been due to residual confounding or confounding by indication and should be interpreted with caution. The overall conclusion is that birth by CS does not appear to have a causal relationship with the aspects of child psychological development investigated.

Using parent report to assess bilingual vocabulary acquisition: a model from Irish

This chapter describes the adaptation of a parent report instrument on early language development to a bilingual context. Beginning with general issues of adapting tests to any language, particular attention is placed on the issue of using parents as evaluators of child language acquisition of a minority language in a bilingual context. In Ireland, Irish is the first official language and is spoken by about 65,000 people on a daily basis. However all Irish speakers are bilingual, and children are exposed to the dominant English language at an early age. Using an adaptation of a parent report instrument, 21 typically developing children between 16 and 40 months were assessed repeatedly over two years to monitor their language development. The form allowed parents to document their children’s vocabulary development in both languages. Results showed that when knowledge of both languages was accounted for, the children acquired vocabulary at rates similar to those of monolingual speakers and used translational equivalents relatively early in language development. The study also showed that parents of bilingual children could accurately identify and differentiate language development in both of the child’s languages. Recommendations for adapting and using parent report instruments in bilingual language acquisition contexts are outlined.

Validation and reliability of the Japanese version of the Food Allergy Quality of Life Questionnaire - Parent Form

Background: Food allergy (FA) is a heavy burden for patients and their families and can significantly reduce the quality of life (QoL) of both. To provide adequate support, qualitative and quantitative evaluation of the parents' QoL may be helpful. The objective of this study is to develop and validate a Japanese version of the Food Allergy QoL QuestionnaireeParent Form (FAQLQ-PF-J), an internationally validated disease-specific QoL measurement of the parental burden of having a child with FA. Methods: The FAQLQ-PF and the Food Allergy Independent Measure (FAIM), an instrument to test the construct validity of the FAQLQ-PF-J, were translated into Japanese. After language validation, the questionnaires were administered to parents of FA children aged 0e12 years and those of age-matched healthy (without FA) children. Internal consistency (by Cronbach's a) and test-retest reliability were evaluated. Construct validity and discriminant validity were also examined. Results: One hundred twenty-seven parents of children with FA and 48 parents of healthy children filled out the questionnaire. The FAQLQ-PF-J showed excellent internal consistency (Cronbach's a > 0.77) and test-retest reliability. Good construct validity was demonstrated by significant correlations between the FAQLQ-PF-J and FAIM-J scores. It discriminated parents of children with FA from those without. The scores were significantly higher (lower QoL) for parents of FA children with a history of anaphylaxis than those without, for those with >6 FA-related symptoms experienced than those with less FA-related symptoms. Conclusions: The FAQLQ-PF-J is a reliable and valid measure of the parental burden of FA in children.