Family Quality of Life from the Perspective of Parents of Children with Intellectual Disabilities

Dajana Bulić 

Center for Rehabilitation Zagreb, Zagreb, Croatia

https://orcid.org/0000-0003-4143-9426

Tomislav Ljutic 

Kindergarten Potočnica

https://orcid.org/0000-0002-2766-8372

Renata Pinjatela 

University of zagreb, Faculty of Education and Rehabilitation sciences

https://orcid.org/0000-0002-5601-1425

https://doi.org/10.33700/jhrs.4.1.154

Abstract

Aim: The quality of life of families with children with intellectual disabilities has been frequently analysed in recent research. There are numerous factors that influence the quality of life of families. The aim of the study was to determine the quality of life of families of children with intellectual disabilities who are cared for by the Sloboština Rehabilitation Centre.

Methods: The study used the Beach Center Family Quality of Life Scale questionnaire, which was completed online by the parents. 51 parents of children and adolescents with intellectual disabilities took part in the study.

Results: The results of the study show that the overall quality of life is satisfactory. However, parents of children with intellectual disabilities are least satisfied with emotional well-being and disability-related support. They are not satisfied with the time they have to pursue their interests or with outside help for all family members. They also consider the support a child with disabilities receives at school to be mediocre. No statistically significant differences in quality of life were found in relation to the age and gender of parents and children, except for the family interaction subscale, where families with girls had a better quality of life.

Conclusion: The results of the study show that although the overall quality of life is satisfactory, families of children with intellectual disabilities need external support that provides them with some free time but also aims to support all family members.

Keywords: family quality of life, intellectual disability, parents, children, support

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Exploring the Parental Experiences in the Media: A Qualitative Analysis of Articles Written by Parents of Children with Autism in Bosnia and Herzegovina

Elvira Celebic  https://orcid.org/0000-0001-9940-6390

Haris Memisevic University of Sarajevo https://orcid.org/0000-0001-7340-3618

https://doi.org/10.33700/jhrs.2.1.62

ABSTRACT

Aim: This paper presents a qualitative study of the experiences of parents raising children with autism, as reflected in the media. The study aimed to explore the lived experiences of parents of children with autism and the challenges they face in Bosnia and Herzegovina.

Methods: A content analysis of 20 media articles featuring parents of autistic children was conducted. The articles were selected from a range of sources, including newspapers, magazines, and online news portals.

Results: We identified four major themes: supports, education, spousal relationships, and future. It should be noted that these themes are often intertwined.

Conclusion: The findings highlight the importance of providing support and resources to parents of children with autism, as well as the need for greater awareness and understanding of the challenges they face. The implications of these findings for policy and practice are discussed, and suggestions for future research are presented.

Keywords: parents, autistic children, content analysis, Bosnia and Herzegovina

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Age of Autism Spectrum Disorder diagnosis and associated factors

Irena Stojanovska Institute for Special Education and Rehabilitation, Faculty of Philosophy, "Ss. Cyril and Methodius" University, Skopje, Macedonia https://orcid.org/0000-0001-6483-4723

https://doi.org/10.33700/jhrs.2.1.66

ABSTRACT

Introduction The mean age of autism spectrum disorder (ASD) diagnosis varies globally and the factors affecting it are inconsistent across populations and studies.

Aim Quantitative research was undertaken to investigate the age ASD was diagnosed and some possibly related factors, in a sample from Macedonia.

Methods A web-based survey was conducted among 103 parents of 103 individuals with ASD, from December 2021 to May 2022. Socio-demographic characteristics of parents/families and demographic and medical characteristics of individuals with ASD were reported through an anonymous questionnaire. Descriptive statistics and non-parametric inferential statistical tests were used to analyse data.

Results The median age of the ASD sample was 10 years and most individuals (47.57%) had moderately severe ASD. In 39.81% ASD was diagnosed by a psychiatrist/neuropsychiatrist, in 37.86% by several professionals, while paediatricians/developmental paediatricians were the source of diagnosis in only 2.91%. Over half of the individuals with ASD (51.46%) received the diagnosis before the age of 4, while around 17% received the diagnosis after the age of 6. The level of education of the parents, family living location, gender, current age and severity of ASD were not found to be associated with the age of diagnosis.

Conclusion Nearly 1/5 of the sample was diagnosed comparatively late ‒ at school age. However, characteristics pertaining to parents/families and to individuals with ASD, did not significantly affect the age of diagnosis. Possible influence of other, external factors (e.g., awareness and vigilance among professionals, availability of early screening programs) is acknowledged and will be included in further research.

Keywords: Autism Spectrum Disorder, diagnosis, age, severity, parents

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