Stress and Family Quality of Life in Parents of Children with Autism Spectrum Disorder: Parent Gender and the Double ABCX Model

Past research has supported the utility of the Double ABCX model of family adaptation for parents raising a child with autism spectrum disorder (ASD). What remains unclear is the impact of family-related variables on outcomes in both mothers and fathers within the same family. We explored the potential predictors of maternal and paternal stress and family quality of life in an Australian sample of 196 parents of children with ASD aged 3-16 years. Using a cross-sectional design, parents completed questionnaires assessing factors within the Double ABCX model attributed to family adaptation. Findings provide further evidence of the negative impact of child externalising behaviours and highlight the importance of family sense of coherence on positive parental outcomes.No Full Tex

Parenting a child with Phenylketonuria (PKU): An interpretative phenomenological analysis (IPA) of the experiences of parents

Phenylketonuria (PKU) is a rare inherited metabolic disorder which can cause neurological damage if left untreated. PKU is identified through newborn screening in developed countries, and treatment begins immediately to prevent these severe consequences. When a child is diagnosed, parents must assume immediate responsibility for the management of PKU and prevention of neurological damage. Quantitative studies have identified significant psychosocial stressors for parents, but little is known about how the parents experience this process. This study aimed to explore the experiences of parents of children with PKU under the age of two. It is the first study to examine these experiences in this way. Seven parents were interviewed about their experiences, and interpretative phenomenological analysis was used to analyse the data. Three main themes were identified: control, striving for normality and acceptance of PKU as a continuum. Links between the themes and processes underpinning the results were explored with relation to existing literature and theories from a clinical psychology perspective. The role of acceptance of PKU was central to the parent’s experiences. Clinical implications and suggestions for further research are discussed

Raising a Child with Autism: A Developmental Perspective on Family Adaptation

While raising a child with an Autism Spectrum Disorder (ASD) often produces chronic stress and strain in families, positive family outcomes are also evident following an ASD diagnosis. Although the complex and heterogeneous nature of ASD is well documented, a coherent understanding of the apparent differences in family outcomes is lacking. This review focuses on the process of family adaptation, identifying important contextual factors that may influence family experiences through the use of a conceptual model. Due to inconsistencies in research findings to date, the potential risk and protective factors in determining family outcomes remain unclear, with most research only focusing on mothers. Few studies have attempted to understand family processes utilising a conceptual model of family adaptation, accounting for stressors, resources, appraisal, and coping strategies. The role of child age in the adaptation process has also been ignored with investigation of family processes across key developmental periods needed to assist in tailoring supports and services to families in a timely fashion.No Full Tex