Lived experiences of Maltese parents of younf children born with biological risks for intellectual disability

Azzopardi, Elayne (2013) Lived experiences of Maltese parents of younf children born with biological risks for intellectual disability. Doctoral thesis (PhD), Manchester Metropolitan University.

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Abstract

Parents of children born with risks for intellectual disability (ID) report emotional upheaval and greater support needs compared to those raising a typically developing child. Exploring these parents’ needs and experiences is critical for the provision of early intervention and/or paediatric services that benefit the whole family. Consequently, this study aimed to explore the experiences and needs of Maltese parents of young children born with biological risks for ID, during the first five years of life. It adopted a cross-sectional qualitative design, using Interpretative Phenomenological Analysis (Smith et al., 2009). Four groups of parents, (N=37) depending on their children’s age (0;6, 2;0, 3;6 and 5;0 years) were interviewed using a semi-structured interview guide. Six super-ordinate themes were identified: ‘experiencing is true understanding’, ‘family functioning’, ‘info-emotional cycle’, ‘micro-system sociological framework’, ‘service-needs-resource cycle’ and ‘experiential challenges’. Socio-cultural influences have affected parents’ interpretations of their experiences and needs. Moreover, parents reported that raising an ‘at risk’ child had an impact on their daily life as a family, as a couple and on their individual lifeworld. Maltese parents felt that their needs were not given their due importance by policymakers and professionals. This warrants the incorporation of parents’ needs, together with the needs perceived for their child, in the provision of early intervention and/or paediatric services in Malta. This study also identified parents’ experiential differences as the child grow, highlighting the need for regular re-evaluation of parents’ needs. Recommendations for changes in Maltese family policy, service provision and education of professionals were proposed to reduce parents’ stresses.