DOI : https://doi.org/10.26758/15.1.28
(1) Child and Adolescent Psychiatrist, Director at the National Therapeutic and Rehabilitation Center for Children, Tirana; e-mail: floridadobi@yahoo.com
(2) Child and Adolescent Psychiatrist at University Hospital Center “Mother Teresa”, Tirana; e-mail: sonila.tomori@gmail.com
(3) Child and Adolescent Psychiatrist at National Therapeutic and Rehabilitation Center for Children, Tirana
Address correspondence to: Besmira ZENELAJ, National Therapeutic and Rehabilitation Center for Children, “Haki Stermilli” Street, Tirana, 1001, Albania; E-mail: zenelajbesmira1@gmail.com Ph: +355693658237
Abstract
Objectives. The aim of this study is to investigate the Quality of Life in children with neurodevelopmental disorders aged 3-6 years old through the perspective of their parents.
Material and methods. A cross-sectional descriptive study was conducted. The Kiddy-KINDLR parents’ version questionnaire was administered to 80 parents of children with neurodevelopmental disorders for 3 months from January to March 2024 and also to a control group of 72 parents of children with typical development. The Kiddy-KINDLR questionnaire is divided into 6 main sub-scales, each investigating different dimensions of the global well-being during the past week: Physical well-being, Emotional Well-being, Self-esteem, Family, Friends, School, and an additional sub-scale with important questions regarding the general functioning. Statistical analysis of the data was carried out using the SPSS 22.
Results. Children were diagnosed with different neurodevelopmental disorders, most of them being (43%) diagnosed with autism spectrum disorder, 15% with ADHD, 19% with speech and language disorder, 21% with intellectual disability, and 3% with Spastic Cerebral Palsy. Data analysis showed a slightly statistically significant relationship between the children diagnosed with autism spectrum disorder and low levels of emotional well-being (p = 0.047), struggling at school, and facing difficulties with their peers (p = 0.048). Almost all of the children with neurodevelopmental disorders faced significant challenges in family interactions.
Conclusions. Assessment of Quality of Life in children with neurodevelopmental disorders can identify what is important to them and to their families and provide the initial information for the policymakers to assess their needs.
Keywords: neurodevelopmental disorder, quality of life, Albania, parents.
Suggested citation (APA)
Dobi, F., Tomori, S., & Zenelaj, B. (2025). Parental perception of quality of life in children with neurodevelopmental disorders – Albanian experience. Anthropological Researches and Studies, 15, 423-430 https://doi.org/10.26758/15.1.28
Introduction
The term neurodevelopmental has been applied to a very broad group of disabilities involving some form of disruption to brain development. This definition groups together a very wide range of neurological and psychiatric problems that are clinically and causally disparate; for example, rare genetic syndromes, cerebral palsy, congenital neural anomalies, schizophrenia, autism, attention deficit hyperactivity disorder (ADHD) and epilepsy (Thapar, Cooper, & Rutter, 2017).
These conditions manifest early in life and may be associated with differences in personal, social, occupational, and academic abilities (American Psychiatric Association Neurodevelopmental Disorders. In Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 2013).
The concept of Quality of Life (QoL) has gained an increasing prominence within psychology, in both research and clinical practice. For individuals in clinical services, QoL is an important measure for evaluating the delivery and the effectiveness of treatment (Harriman & Oyefeso, 2021, p. 26).
There are numerous existing theoretical frameworks and definitions concerning QoL. The one proposed by Schalock and Verdugo (2012) has great acceptance in the field of disability being given the amount of the empirical evidence on its validity and because it is the most widely used by professionals in organizations providing services and support in numerous countries (Arias et al., 2018, p. 123).
According to this model, QOL is a multidimensional phenomenon composed of eight core domains — emotional wellbeing, physical wellbeing, material wellbeing, social inclusion, interpersonal relationships, self-determination, rights, and personal development — that are influenced by personal and environmental variables. These eight core domains are the same for all people but are assessed on the basis of culturally sensitive indicators. The indicators’ measurement results in personal outcomes that may be used for developing a person-centred planning and guiding the provision of an individualized support (Schalock, Verdugo, & Gomez, 2011, p. 276).
Although QoL research is becoming increasingly robust, most studies have investigated a single disease entity, such as the cerebral palsy, epilepsy, or cancer (Ellzey, Valentine, Hagedorn, & Murphy, 2015, p. 98). QOL is a key outcome in the monitoring and the treatment of the neurocognitive developmental disorders and disabilities (NDD) and understanding the experiences and the difficulties faced by the patients and their families (Puka, Conway, & Smith, 2020, p. 379).
Until now there are no studies in Albania investigating the quality of life of children with neurodevelopmental disorders.
Material and methods
The aim of this study is to investigate the QoL of children with neurodevelopmental disorders and the parents of children with typical development aged 3-6 years old through the perspective of their parents.
This is a descriptive, cross-sectional study. It was carried out during a 3-month period from January to March 2024.
The quality of life of children with neurodevelopmental disorders through their parents’ perspective was investigated by distributing The Kiddy-KINDLR parent’s version questionnaire to 80 parents whose children were hospitalized to receive the therapeutic rehabilitation (Ravens-Sieberer, U. & Bullinger, M, 1998a). 72 participants of the control group were parents of children with typical development (TD) whose children were part of the kindergarten “1 Qershori”. Appropriate informed consent from the parents was obtained. This study was approved by the Institutional Review Board of the Ministry of Health and Social Protection.
The Kiddy-KINDLR questionnaire is divided into 6 main sub-scales, each investigating different dimensions of the global well-being during the past week: Physical well-being (4 Items), Emotional Well-being (4 Items), Self-esteem (4 Items), Family (4 Items), Friends (4 Items), School (4 Items) and an additional sub-scale with important questions regarding the general functioning (22 Items). The questionnaire is a Likert scale from 1 to 5 points. The values are as it follows: 1 = never, 2 = rarely, 3 = sometimes, 4 = often, and 5 = all the time, but some specific items needed to be reversed when the data was interpreted. The cut-off is 50 points. The instrument has not yet been validated and this study may be considered a pilot study for the next steps in its validation.
In order to investigate various demographic aspects, a demographic section was added to the questionnaire.
Statistical analysis
Data analysis was carried out through the SPSS 22. We admit that in order to determine the correlations between variables the χ2 test and the Pearson and Spearman correlation coefficients were used. The statistical significance was set at a p < 0.05.
Results
The questionnaire was completed by mothers of the children hospitalized for rehabilitation treatment, as they stayed with their children during the process, and by mothers of the children attending the “1 Qershori” kindergarten.
Table 1
Sociodemographic characteristics of participants (to see Table 1, please click here)
Data analysis found none statistically significant relationship between the sociodemographic data and the quality of life in the two groups.
Children with NDDs participating in the study were mostly males (68.5%), and 31.5% were females within the age range between 3-6 years old, while children with TD were mostly females (61%) and 39% were males.
Among children which were diagnosed with different neurodevelopmental disorders, most of them (43%) were diagnosed with autism spectrum disorder. 15% of them were diagnosed with ADHD, 19% of those children were diagnosed with speech and language disorder, 21% of them with intellectual disability, and 3% of those children were diagnosed with Spastic Cerebral Palsy.
Based on the diagnosis, the obtained mean scores of QoL were as follows: children diagnosed with autism spectrum disorder scored 25.7 (SD 6.8); children with ADHD scored 59.4 (SD 11.7); children with speech and language disorder scored 72.3 (SD 10.5); children with intellectual disability scored 30.2 (SD 8.3); and children with Spastic Cerebral Palsy scored 27.3 (SD 7.2).
Table 2
Parent-reported Health-Related Quality of Life for 3- to 6-year-old children (to see Table 2, please click here)
The study showed that the parents of the children with neurodevelopmental disorders reported lower levels of general well-being (49.5 points) than the parents of the children with typical development (81.4 points).
The parents of the children with neurodevelopmental disorders reported the lowest levels in the subscales of the emotional well-being and their relationship with their peers.
The results showed a slightly statistically significant relationship between the children diagnosed with autism spectrum disorder and low levels of emotional well-being (p = 0.047) and struggling at school and facing difficulties with their peers (p = 0.048).
Data analysis showed that almost all of the children with neurodevelopmental disorders had difficulties interacting with their families, as reported by their parents, but the relationship was not statistically significant (p = 0.62).
The results did not show any statistically significant differences between the socioeconomic status and the total score points between the two samples (p = 0.89).
Discussions
It appears that children with NDD from their parents’ perspective show a poorer QoL than the general population when the average points of the Kiddy-KindlR are compared. These findings seem to be consistent with the previous studies that highlighted the negative impact of the mental health symptoms on QoL in neurodevelopmental conditions (Mahjoob et al., 2024, p. 94).
Physical well-being showed higher levels of quality of life than other dimensions, such as emotional well-being and socialization. Previous studies indicate higher rates of physical problems in children with NDDs, but this is more common when several NDDs are combined (Alabaf et al., 2019, p. 84).
Self-esteem is considered to be one of the strongest nodes in each quality-of-life network, and low self-esteem is core to the most mental disorders, including the neurodevelopmental disorders (Barbalat et al., 2022, p. 7). This study we conducted showed that the parents reported low levels of self-esteem in their children’s self-perception.
The autism spectrum disorder is characterized by social communication difficulties and social skills abilities that are significantly different from the neurotypical populations (Pascoe et al., 2023, p. 2161). What our study showed is that the children with neurodevelopmental disorders, especially ones diagnosed with autism spectrum disorder, showed poor levels of social skills with an average point below the typically developed children.
Raising a child with a neurodevelopmental disorder has often been associated with a poorer quality of life and family functioning (Emmanuel et al., 2022, p. 316). Several studies show the difficulties and family struggles with children with neurodevelopmental disorders, but what is shown in this study are the difficulties that the children face when they try to build a relationship with their families. Compared to the typically developed children, the parents reported poor skills when it comes to dealing with the family relationships with a low average point.
This study showed that the parents reported poor Global well-being, suggesting a poor quality of life for their children. The average points reported in the current study are below the average of the neurotypical population.
Nevertheless, as a recent study showed, the parents are not the objective judges but have their own perspectives, which may serve as an additional source of information. Clearly, a proxy rating will allow only a partial sense of the overall impact of a condition on QoL, which may place important constraints on the validity of such measurements. An alternative view, which has received little attention, is the extent to which the parent proxy measures of QoL are aligned with the concept of the functional impairment and not QoL. According to the clinical impression, it might well be that parents rather evaluate their children’s impairment when inquired about their QoL (Jonsson et al., 2017, p. 444).
Finally, we acknowledge several limitations in this study. These include the potential for the parental bias in reporting which may have influenced the accuracy of the data. Additionally, the geographical scope of the sample was limited, which may restrict the generalizability of the findings to broader populations. The cross-sectional design of the study also prevents us from drawing causal conclusions. Furthermore, the Kiddy-KINDLR questionnaire has not been culturally validated for the Albanian context, which may affect its relevance and applicability in this specific setting.
Conclusions
The neurodevelopmental disorders have a huge impact on all domains of a child’s well-being, interfering with his/her physical well-being, with the social inclusion, with the emotional well-being, and the family function. Children with NDDs have a lot of difficulty functioning within their families, implying that the parent and the family psychoeducation training is essential.
To better understand the needs and priorities of children with neurodevelopmental disorders, it is recommended that the future assessments of Quality of Life (QOL) will include the perspectives of both the children and their families. Such evaluations may provide valuable insights into the factors that matter most to them, informing tailored interventions. Furthermore, these assessments may serve as an important resource for policymakers to make informed decisions, ensuring that the needs of these children are adequately addressed both in health policies and their programs.
Competing interests
The authors declare no competing interests.
Consent to participate
Informed written consent was obtained from each participant at the time of recruitment. The subjects were informed that they could withdraw from the study at any stage, and they were assured of confidentiality.
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