Search

Background A variety of psychosocial factors have been shown to affect the quality of life of families (FQoL). Aim This study aimed to assess the impact of mother's demographic characteristics, parental stress, illness perceptions about autism spectrum disorder (ASD), coping strategies, ASD severity and time since diagnosis on FQoL during the initial period following diagnosis (≤6 months). Method Fifty-three mothers of children newly diagnosed with ASD completed the Beach Center Family Quality of Life Scale, the Autism Parenting Stress Index, the Brief Illness Perception Questionnaire and the Brief Coping Orientation to Problems Experienced Inventory. A descriptive analysis was conducted on the demographic characteristics of the family. Eta coefficients and Pearson's analysis were used to determine the associations between the variables and the FQoL dimensions. Hierarchical regression was used to determine whether variables explained a statistically significant family quality of life variance. Results Pearson's analysis and eta coefficients indicated several correlations. Hierarchical regression analysis showed that higher parental stress related to core autism symptoms was associated with poorer FQoL (95% CI −0.08 to −0.02, P = 0.001), and higher perceived treatment control was associated with better FQoL (95% CI 0.04–0.16, P = 0.001). In addition, stronger perceived personal control was associated with higher physical/material well-being (95% CI 0.01–0.16, P = 0.022) and higher disability-related support (95% CI 0.30–0.61, P = 0.001). Higher family monthly income was associated with better FQoL (95% CI 0.08–0.027, P = 0.000), whereas marital status (divorced mother) was correlated with poorer FQoL (95% CI −0.68 to −0.16, P = 0.002). Conclusions Interventions should emphasise managing the disorder's characteristics and implementing psychoeducational and supportive programmes for parents, immediately after the diagnosis, to enhance FQoL.

Background Caregivers of children with autism spectrum disorder (ASD) are sensitive to the internalisation of the stigma, known as affiliate stigma, resulting in reduced self-esteem, isolation and poor psychological well-being. Aims This study aims to validate the Greek version of the Affiliate Stigma Scale (ASS) among mothers of children with ASD. Method The translated version of ASS in Greek was administered to 53 mothers of children newly diagnosed with ASD in two time periods: 1–6 months from diagnosis (time point 1) and 12 months from the initial assessment (time point 2). The control group consisted of 62 mothers of typically developing children. Results The ASS total mean score revealed a moderate level of stigma to the ASD group in both assessments. The reliability measures by item showed a satisfactory composite reliability (affective 0.828, cognitive 0.833, behaviour 0.857). Cronbach's alpha revealed that the estimated internal consistency was excellent (α = 0.888), and it found a high positive item-total correlation. Receiver operating characteristic analysis results indicated a statistically significant positive discrimination (area under the curve 0.849, P = 0.000) between the groups. The cut-off point was 31.00, with a sensitivity of 0.849 and a 1 – sensitivity of 0.258. Conclusions The proposed version of the ASS has good psychometric properties and is valid and reliable for measuring affiliate stigma among caregivers of children with ASD in Greece. Health professionals can use it to assess and understand the stigma experienced by caregivers of children with ASD, and design appropriate interventions to reduce their affiliate stigma.