ANTHROPOLOGICAL RESEARCHES AND STUDIES
No: 15, 2025

THE FIRST STEP IN VALIDATING THE PedsQL™ – FAMILY IMPACT MODULE QUESTIONNAIRE IN ROMANIA. THE QUALITY OF LIFE OF PARENTS WITH CHILDREN WITH AUTISTIC SPECTRUM DISORDER

Camelia POPA (1), Ana DRAGU (2), Elisabeta NIȚĂ (3) Cornelia RADA (4)
Keywords: autistic spectrum, quality of life, parents.

DOI: https://doi.org/10.26758/15.1.13

(1) Institute of Philosophy and Psychology “Constantin Rădulescu – Motru”, Romanian Academy, Romania, UNATC “I.L.Caragiale” Bucharest, e-mail: popa_zaizon@yahoo.com

(2) PhD. Student, School of Advanced Studies of the Romanian Academy. Institute of Philosophy and Psychology “Constantin Rădulescu – Motru”, Romanian Academy, Romania, e-mail: anadragu@gmail.com

(3) Fundeni Clinical Institute, Bucharest, Romania, e-mail: beti_iris@yahoo.com

(4) “Francisc I. Rainer” Institute of Anthropology, Romanian Academy, Bucharest, Romania, e-mail: corneliarada@yahoo.com

Address correspondence to: Ana DRAGU, “Constantin Rădulescu-Motru” Institute of Philosophy and Psychology, Department of Psychology, Romanian Academy, 13 September Avenue, No.13, 5th District, Bucharest, 050711, Romania. Ph.: + 40-751917406; E-mail: anadragu@gmail.com

Abstract

Objectives. The study’s objectives were to test the psychometric properties of the Romanian version of The Pediatric Quality of Life Inventory (PedsQL) – Family Impact Module (PedsQL™ – FIM), an instrument that evaluates the quality of life of parents of children with chronic illnesses, and to provide a general characterization of life’s quality.

Material and Methods. The Romanian version of the PedsQL™ – FIM was obtained based on a request from the developer through the Mapi Research Trust, and the questionnaire was applied to 108 parents of children with autism spectrum disorders (ASD). Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were performed, the internal consistency, the convergent validity and the discriminant validity were also calculated.

Results. The Romanian version of the PedsQL™ – FIM passed the CFA and EFA tests, showing satisfactory internal consistency for all scales, with nearly all standardized coefficients above 0.7. Its use highlighted significant deteriorations in total quality of life scores and scores for emotional, social, cognitive functioning, communication, worry, daily activities, and family relationships scales.

Conclusions. The application of the PedsQL™ – FIM confirmed the results of international studies – the quality of life of parents of children with ASD is severely deteriorated due to the stress generated by the child’s illness, especially their disruptive behaviors. Evaluating the quality of life of parents of children with ASD using this instrument provides a solid foundation for support interventions for these parents, helping them become more functional physically, emotionally, cognitively, and socially.

Keywords: autistic spectrum, quality of life, parents.

Suggested citation (APA)

Popa, C., Dragu, A., Niță, E., & Rada, C. (2025). The first step in validating the PedsQL™ – Family Impact Module Questionnaire in Romania. The quality of life of parents with children with autistic spectrum disorder. Anthropological Researches and Studies, 15, 199-210. https://doi.org/10.26758/15.1.13

Introduction

The quality of life of parents of children with autism spectrum disorders (ASD), a subject scarcely addressed in research, has never been a target of government’s health policies, although other countries have specific policies based on this indicator (Service Canada n.d.).

Research has identified that an autistic child fundamentally alters the life trajectory of his parents, from their professional practice to the social circles and their daily habits (Hartley et al., 2010; Gomes et al., 2015). The family’s entire energy is focused on raising and rehabilitating the child to develop his independent life skills (Dragu, 2015).

Parents often report persistent fatigue, a carousel of negative feelings, discouragement, lack of prospects, significant financial difficulties and unimaginable physical efforts. Some obsessively follow any progress of the child, interact with therapists, teachers, educators, professors, engage in autism awareness campaigns and fundraising, specialize in psychology, while others abandon this fierce struggle even before starting it, feeling a sense of failure in their own lives (Postorino et al., 2019; Mancil et al., 2009; Tehee et al., 2009; Leyfer et al., 2006; (Liu et al., 2016).

The constant, uninterrupted stress caused by the children’s symptoms negatively affects the physical and mental health of parents and their overall quality of life (Hayes & Watson, 2013; Mugno, Ruta, D’Arrigo, & Mazzone, 2007). Parents face immense pressure – they must be prepared under any circumstances to control the unpredictable behavior of their children, which may become out of control due to its provocative or aggressive nature (Huang et al., 2019). Sometimes, the child exhibits strong crises or even suicidal behaviors (Bonis, 2016; McClintock et al., 2003), which parents report as the most challenging aspects of their experience (Bitsika & Sharpley, 2017; Kissel & Nelson, 2016).

Children’s symptoms exacerbate parents’ anxiety and depression symptoms, creating a cycle of mutual deterioration (Padden & James, 2017). These parental psychiatric disorders caused by severe children’s behavior negatively affect the family functioning and their quality of life (Schnabel et al., 2020).

Children with ASD behave unpredictably due to communication and social difficulties. They are unable to convey their needs and feelings due to speech delays and therefore express dissatisfaction and act uncontrollably when their desires and feelings are not understood (Smith et al., 2021); on the other hand, they perceive themselves as being different from others and have the inability to adapt to certain circumstances, which requires constant parental attention (Postorino et al., 2019).

Studies have shown an increased risk of mental health problems such as anxiety and depression among the parents of the children with ASD compared to parents of children without ASD (Ilias et al., 2018).

Sometimes the child’s condition seems to be transmitted to the parent with whom they live symbiotically, as children with ASD, compared to neurotypical children, have higher levels of anxiety and a higher prevalence of internalizing (depressive mood and anxiety) and externalizing (hyperactivity and aggression) behavioral problems that occur simultaneously (Rodriguez et al., 2019).

It has been found that the parents of children with ASD are more stressed than those of children with other disabilities (Hayes & Watson, 2013), and their stress is often dependent on environmental conditions over which they have no control – for example, loud noises, including the noise of the washing machine, may cause children significant stress and precipitate their reactions (Losada-Puente, Baña, & Fiuza Asorey, 2022).

The cultural environment was another important variable when analyzing the impact of ASD on parents and their quality of life (Zakirova-Engstrand et al., 2020; Ilias et al., 2018). Although low parental efficacy was a constant in all studies, the situation was better in high-income countries than in the poor ones (Ilias et al., 2018). According to the same researchers, which compared the parents from different countries, there would be no differences regarding the stress level of parents of children with ASD, their coping mechanisms, and the level of support provided by authorities.

Material and methods

The Pediatric Quality of Life Inventory – Family Impact Module (PedsQL™ – FIM) is a standardized multidimensional instrument targeting parents’ concerns about their child’s health. It was developed in English and is currently available in 49 languages with a superior reliability and validity (Varni, 2020).

Its use involves a fee for funded research but is free in unfunded studies for researchers with limited resources. The Romanian version of the module was obtained based on a request from the developer through the Mapi Research Trust. MRT is a non-profit organization that facilitates access to clinical outcome assessments (COAs) for the entire scientific community. COAs allow measuring the impact of diseases and treatments on patients’ quality of life.

The Family Impact Module (Varni et al., 2004) is derived from the PedsQL™ – Pediatric Quality of Life Inventory, which measures the impact of various diseases on children and adolescents. It has two versions: standard (measuring symptoms from the last month) and acute (measuring symptoms from the last week). The standard version was used in this study. The module has 36 items and includes 8 scales measuring parent self-reported functioning. Average scores are calculated for each dimension using a 5-point Likert scale. The total score is given by the average results for all the 36 items, ranging from 0 to 100, with a higher score indicating a better functioning and a less impact on quality of life (Fairclough, 2010).

The quality of life scales for parents are:

  1. Physical functioning (6 items) – targets problems in this area such as fatigue, headaches, weakness, gastrointestinal issues. Example of items: “I feel tired when I wake up in the morning,” “I feel physically weak.”
  2. Emotional functioning (5 items) – targets issues such as anxiety, sadness, anger, frustration, helplessness, and hopelessness. Example of items: “I feel anxious,” “I feel sad,” “I feel angry.”
  3. Social functioning (4 items) – targets feelings of isolation, difficulties in obtaining help from others, and difficulties in finding time and energy for social activities. Example of items: “I feel isolated from others,” “It is hard for me to find time for social activities.”
  4. Cognitive functioning (5 items) – targets difficulties in maintaining attention, memory, and thinking speed. Example of items: “It is hard for me to maintain my attention on things,” “It is hard for me to think quickly.”
  5. Communication (3 items) – targets problems with communication, including the fact that others do not understand the family situation, difficulties in discussing about the child’s illness, and communicating with medical professionals. Example of items: “It is hard for me to talk to the others about my child’s health,” “It is hard for me to tell doctors and nurses how I feel.”
  6. Worry (5 items) – targets problems with worry (including worry about the child’s treatments and possible side effects), worry about how the others may react to the child’s condition, worry about the effects of the disease on other family members, and worry even about the child’s future. Example of items: “I worry that my child’s treatments might not go well,” “I worry about my child’s future.”
  7. Daily activities (3 items) – targets problems in performing the daily activities, including that they take more time and effort, and difficulties in finding time to complete household tasks. Example of items: “Family activities take more time and effort,” “I feel too tired to finish household tasks.”
  8. Family relationships (5 items) – targets problems with the family relationships, including the communication, the stress and the conflicts between the family members and the difficulties in making decisions and solving problems as a family. Example items: “In the last month, due to your child’s health, how much has it been a problem for your family? Lack of communication between the family members,” “Conflicts between the family members.”

To achieve the first objective of the study, namely testing the psychometric properties of the Romanian version of the PedsQL™ – Family Impact Module, the Jamovi program (2022 version 2.4.8) was used, a free statistical software based on the specialized R language, Lavaan package.

For the second objective of this study, namely the general characterization of the quality of life for 108 parents of children with autism, the module was distributed online in an anonymous questionnaire with the support of autism associations.

Statistical Clarifications

Discriminant validity was evaluated using the heterotrait-monotrait ratio of correlations (HTMT). HTMT values close to 1 indicate a lack of discriminant validity. Using HTMT as a criterion involves comparing it to a predefined threshold of 0.85 or 0.90. If the HTMT value is greater than the threshold of 0.85 (0.90), it may be concluded that there is a lack of a discriminant validity. If the p-value from Bartlett’s test of sphericity is less than the chosen significance level (common options are 0.05 and 0.01), then the dataset is suitable for a data reduction technique. This test requires multivariate normality. If this condition is not met, the Kaiser-Meyer-Olkin (KMO) criterion may still be used. The Kaiser-Meyer-Olkin measure of sampling adequacy is a statistic that indicates the proportion of variance in observed variables that might be caused by underlying factors. High values (close to 10) generally indicate that a factor analysis may be useful with the analyzed data. If the value is less than 0.50, then the results of the factor analysis may be likely to not be very useful. Discriminant validity (divergent) refers to the degree to which measures that should not be closely related are indeed distinct. Because there are multiple measures in a study, constructs (factors) must have their own identity (distinct), with no overlapping factors. In order to statistically establish the individuality of constructs, a discriminant validity is used.

Results

The investigated sample included: 91 women (84.2%) and 17 men (15.8%); 46% parents under 30 years old, 25% parents aged 31-40 years, 51.8% parents aged 41-50 years, and 18.6% parents aged 51-60 years; 85.1% married parents or in a consensual union, 14.9% single parents; 65.7% parents with university and postgraduate studies, and 34.3% parents with secondary education.

For testing the psychometric properties of the PedsQL™ – FIM on the Romanian population sample, the preliminary exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were performed, and the internal consistency, convergent validity and the discriminant validity were calculated.

In the preliminary exploratory factor analysis (EFA), all 36 original questionnaire items were formally analyzed, mainly to evaluate the KMO (Kaiser-Meyer-Olkin) value and Bartlett’s test. The overall KMO value was 0.911, and all KMO values for each item were above 0.840. Bartlett’s test of sphericity was significant (χ2= 3596, df = 630, p < 0.001).

For the confirmatory factor analysis (CFA) with 8 factors corresponding to the 8 parental functioning scales, data from 108 subjects (93 mothers and 15 fathers) were analyzed. The structural equation model with eight factors performed well, presenting satisfactory model fit indicators: CFI = 0.979, TLI = 0.977, RMSEA = 0.012. All regression coefficients (the factor loadings) were statistically significant (p<.001), with nearly all beta values (the standardized coefficients) above 0.7. The model is graphically presented in Figure 1.

Figure 1

First-order PedsQL™ – FIM Model (to see Figure 1, please click here)

The initial model was modified by introducing two second-order latent factors: the Parental Functioning and the Family Functioning. The first factor was measured by the 6 first-order factors: PF, EF, SF, CF, CO, and WO. The second factor was associated and measured by the other two first-order factors: DA and FR.

The modified structural model with eight first-order factors and two second-order latent factors performed well, presenting satisfactory model fit indicators: CFI = 0.980, TLI = 0.978, RMSEA = 0.034. All regression coefficients were statistically significant (p<.001), with nearly all beta values (standardized coefficients) above 0.7. The model is graphically presented in Figure 2.

Figure 2

Second-order PedsQL™ – FIM model (to see Figure 2, please click here)

Regarding the internal consistency, the scales associated with the 8 latent factors showed satisfactory internal consistency, with both alpha and omega values above 0.7. The average variance extracted (AVE), which evaluates the degree of shared variance between the model’s latent variables, was above the acceptable value of 0.5, indicating the satisfactory convergent validity (Table 1).

Table 1

PedsQL™ – FIM Model – Internal Consistency (to see Table 1, plsease click here)

In testing the convergent validity, the composite reliability values were also satisfactory, above the accepted reference threshold of 0.7, respectively: 0.940 for PF, 0.935 for EF, 0.917 for SF, 0.957 for CF, 0.805 for CO, 0.945 for WO, 0.922 for DA, and 0.980 for FR, indicating that convergent validity was supported in the dataset. The convergent validity indicates that items forming a construct converge or have a high proportion of shared variance. It is the degree of confidence that a specific trait is well measured by its indicators.

For the analyzed model, HTMT values (Table 2) were below 0.85, indicating good discriminant validity.

Table 2

PedsQL™ – FIM Model– heterotrait-monotrait (HTMT) ratio of correlations (to see Table 2, please click here)

Due to the small sample’s size, model invariance could not be tested. Even with this limitation, it is reasonable to consider that the Romanian version of the PedsQL™ – FIM is a suitable tool for measuring and reporting parents’ quality of life and family’s functions.

Regarding the quality of life assessment for the investigated sample using the PedsQL™ – FIM, the results showed a marked deterioration in all indicators (Tables 3, 4, and 5). The lowest scores were obtained in a descending order for worry, daily activities, social functioning, emotional functioning, and physical functioning scales. Cognitive functioning, family relationships and communication scores were better but still far below the average values calculated using this tool (both the maximum total quality of life score and the score on each scale is 100).

Analyzing the scores by gender, higher scores were visible for men on all scales; however, the numerical imbalance of the investigated sample requires caution in interpreting the significance of these differences.

Table 3

Average Scores on Quality of Life Scales for Parents (to see Table 3, please click here)

Table 4

Average Scores by Gender on Quality of Life Scales (to see Table 4, please click here)

Discussions

The results obtained from this Romanian sample show a massive deterioration in all quality of life’s indicators for parents of children with ASD – the total quality of life score of 50.81 is almost a half of the maximum score of 100 points. Comparatively, in a similar study, Popa și Niță (2023) used the PedsQL – FIM Scale to measure the quality of life of 100 parents of children with cancer and obtained a total average score of 63.3.

On the PedsQL™ – FIM scales, the results showed that Worry, daily activities, social functioning, emotional functioning, and the physical functioning had the most significant impact on lowering the total quality of life score for the investigated sample.

Worry involves both concerns about the child’s treatments and the possible side effects, and how others react to the child’s condition. This dimension also includes fears about the effects of the disease on other family members and concerns about the child’s future. Parents of autistic children are more worried and stressed – and have a deteriorated quality of life – not only compared to parents of normally developing children (Padden & James, 2017) but also compared to parents of children diagnosed with other disabilities (Barroso et al., 2018; Hayes & Watson, 2013).

Daily activities refer to problems in performing daily tasks, including that they take more time and effort, and difficulties in finding time to complete household chores (Papadopoulos, 2021).

Emotional functioning involves anxiety, sadness, anger, frustration, helplessness, and hopelessness. Increased parental stress and psychopathology have been attributed in other studies to the severity of the emotional and behavioral problems manifested by the child (Baker et al., 2012; Karst & Van Hecke, 2012; Leyfer et al., 2006); the exhaustive caregiving demands associated with parents’ poor coping abilities and lack of support; economic burden; (Papadopoulos, 2021; Weiss et al., 2014); or difficulty understanding the manifestations of ASD (Ilias et al., 2018).

Physical functioning targets fatigue, headaches, weakness, and somatizations (gastrointestinal problems). Reducing difficult behaviors in children with ASD may decrease parents’ fatigue and improve the relationship between them and their children (Brewton et al., 2021; Zuckerman et al., 2016; Hebert & Koulouglioti, 2010), with a positive impact on the quality of life.

For cognitive functioning, family relationships, and communication, the scores were better but still far below the average values calculated using this instrument (maximum score of 100). The cognitive functioning involves difficulties in maintaining attention, memory, and thinking speed. Family relationships target marital problems – communication between spouses, marital stress, conflicts between family members, and difficulties in making decisions and solving problems as a family. Communication refers to: others’ misunderstanding of the family situation, difficulties in discussing the child’s illness, and communicating with the medical professionals. It has been proven that the support network (including the life partner, family, and friends) is essential for managing ASD-associated stress (Schofield & Beek, 2009).

Regarding the score differences between men and women on all quality of life scales, with much better results for men, these are plausible when compared to other gender-related research. It has been proven that maternal stress is higher than paternal stress and it is also an important predictor of intervention outcomes for children with ASD – due to it, more modest results are obtained in behavioral interventions aimed at developing language/communication and other adaptive behaviors (Yamada et al., 2006).

In the same vein, a systematic review of ten studies in the field (Gomes et al., 2015) indicated that autism spectrum disorders strongly influence the family’s dynamics, leading to the maternal overload. Another study detected high levels of parental distress in about 70% of mothers and 40% of fathers of children with severe disabilities (Dickinson & Place, 2016).

Mothers of children with autism are more prone to depression and even face such a disorder. For mothers, the stress associated with parenting a child diagnosed with autism is associated with the stress of household responsibilities, playing an important role in depression alongside stigma. Involved in caring for the special-needs child most of their time, mothers face more challenges than fathers (Karst, 2012).

The intensity of maternal stress has been demonstrated through a cross-sectional study. Ilias et al. (2018) found that the stress was significantly higher in the group of mothers with autistic children than in mothers with other developmental disorders of their children and for non-Hispanic mothers in the USA. There was also a link between maternal loneliness, social support, and depressive symptoms in children with autism, and the risk of maternal depression increased with the severity of autism.

Another study focused on mothers’ difficulties in developing professional careers due to the childcare (Rogge & Janssen, 2019). Huang, Zhang, & Chen, (2019) analyzed the stress levels of mothers of children with autism and reported higher rates of depression in mothers of girls who experienced feelings of shame and guilt, especially in the presence of people who did not understand autism pathology and its symptoms. Mothers attributed the decline or loss of family relationships to the time-consuming nature of continuous child care, which did not allow them leisure activities.

Therefore, it is plausible that improving the functionality of children with ASD leads to increased maternal well-being and vice versa. Unlike the maternal stress, paternal stress has been the subject of fewer studies. Soltanifar et al. (2015) showed that fathers of children with autism often repress their feelings through anger, and a child with disabilities has a greater impact on the mother than on the father in terms of perceived stress.

It has been reported that all the parents experience feelings of confusion, denial and guilt immediately after receiving the ASD diagnosis for their child (Stuart & McGrew, 2009), creating, in that way, a state of parental failure and difficulties in family relationships. For this reason, supportive psychotherapy should begin immediately (Dawson-Squibb et al., 2019).

The relationship between parental stress and quality of life on one hand and severe behavioral problems of children with autism on the other is bidirectional – problems increase parental stress and vice versa. Karst and Van Hecke (2012) demonstrated that the increased parental stress perpetuates and aggravates maladaptive behaviors in children. Stress, as discomfort resulting from the demands associated with the parental role, has a negative effect not only on the outcomes of behavioral interventions but also on the health of all family members (Postorino et al., 2019; Mancil et al., 2009; Tehee et al., 2009), and factors associated with this stress include: feelings generated by the loss of personal control, absence of spousal support, lack of informal and professional support, adjustments to the child’s condition, inadequate housing, and finances (Cohrs & Leslie, 2017; Eisenhower et al., 2013; Smith et al., 2012; Ingersoll & Hambrick, 2011; Hoffman et al., 2009).

Conclusions

This study showed that the Romanian version of the PedsQL™ – FIM has good psychometric properties and an acceptable internal consistency. Its application to 108 participants revealed a significantly deteriorated quality of life for parents of children with autism, as well as significant differences between men and women in favor of men, both in terms of the total quality of life score and the factors that compose quality of life.

With the help of the PedsQL™ – FIM, valuable information may be obtained about how children’s health affects the overall families’ quality of life, as well as the resilience strategies/factors mobilized by families. The instrument is suitable for comparing families affected by various somatic and psychological conditions of children (to understand the differences between family needs, challenges, and resources) and for measuring changes in family functioning and quality of life after specific interventions/treatments based on the scores obtained.

Due to the small size of the sample, model invariance could not be tested. Even with this limitation, it may be stated that the Romanian version of the PedsQL™ – FIM is an adequate tool for measuring and reporting the quality of life of parents and of family functions.

Additionally, the investigated sample, which involved convenience sampling, was unbalanced in terms of gender. In the sample of N = 108 participants, parents of children with ASD, there were 91 women and only 17 men, prompting caution in interpreting the significant differences by gender in quality of life’s parameters, although consistent differences were noticed in scores. For the future, it is proposed to continue validating the PedsQL™ – FIM, including testing the invariance of this instrument with larger and more gender-balanced samples, as well as applying it to subgroups constituted based on parent age, education, marital status, child age, or time of diagnosis (the period in which the parent had to cope with ASD).

In conclusion, evaluating the quality of life of parents of children with ASD using this instrument provides a solid foundation for support interventions for these parents, helping them become more functional physically, emotionally, cognitively and socially. The validated PedsQL™ – FIM may serve as a valuable tool for clinical psychologists by providing them actionable insights into the quality of life and specific stressors affecting parents of children with ASD, enabling them with tailored interventions in order to improve family functioning and parental well-being. Additionally, its use in clinical settings may aid psychologists in identifying areas requiring immediate support, such as emotional or social functioning, and in tracking the effectiveness of interventions over time to optimize therapeutic outcomes.

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.

References

  1. Baker, J. K., Seltzer, M. M., & Greenberg, J. S. (2012). Longitudinal effects of parenting a child with autism: Maternal depressive symptoms and the mediating role of child behavior problems. Journal of Autism and Developmental Disorders, 42(8), 1683-1693. doi: 1037/a0024409
  2. Barroso, N. E., Mendez, L., Graziano, P. A., & Bagner, D. M. (2018). Parenting stress through the lens of supportive relationships in families of children with developmental disabilities. Journal of Family Psychology, 32(5), 616-627. doi: 1007/s10802-017-0313-6
  3. Bitsika, V., & Sharpley, C. F. (2017). Understanding experiences and needs of families of children with autism. New York: Nova Science Publishers.
  4. Bonis, S. (2016). Stress and parents of children with autism: A review of literature. Issues in Mental Health Nursing, 37(3), 153-163. https://doi.org/10.3109/01612840.2015.1116030
  5. Brewton, C. M., Nowell, K. P., Lasala, M. W., & Goin-Kochel, R. P. (2012). Relationship between the social functioning of children with autism spectrum disorders and their siblings’ competencies/problem behaviors. Research in Autism Spectrum Disorders, 6(2), 646-653. https://doi.org/10.1016/j.rasd.2011.10.001
  6. Cohrs, A. C., & Leslie, D. L. (2017). Depression in parents of children diagnosed with autism spectrum disorder: A claims-based analysis. Journal of Autism and Developmental Disorders, 47(5), 1416-1422. DOI: 10.1007/s10803-017-3063-y
  7. Dawson-Squibb, J.-J., Davids, E. L., Harrison, A. J., Molony, M. A., & de Vries, P. J. (2019). Parent education and training for autism spectrum disorders: Scoping the evidence. Journal of Autism and Developmental Disorders, 49(10), 4056-4071. https://doi.org/10.1177/1362361319841739
  8. Dickinson, H., & Place, M. (2016). A longitudinal study of self-esteem, self-efficacy, and social support as predictors of mental health. Journal of Adolescence, 45, 1-11. https://doi.org/10.1111/sjop.12618
  9. Dragu, A. (2015). Mâini cuminți. Copilul meu autist. Polirom Publishing House.
  10. Eisenhower, A. S., Baker, B. L., & Blacher, J. (2013). Children’s delayed development and behavior problems: Impact on mothers’ and fathers’ stress and marital satisfaction. Journal of Intellectual Disability Research, 57(6), 583-597. DOI: 10.1016/j.socscimed.2008.09.033
  11. Fairclough, D. L. (2010). Design and Analysis of Quality of Life Studies in Clinical Trials. Chapman and Hall/CRC.
  12. Gomes, P., Lima, L. H., Bueno, M. K., Araújo, L. A., & Souza, N. M. (2015). Autism in Brazil: A systematic review of family challenges and coping strategies. Journal de Pediatria, 91(2), 111-121. https://doi.org/10.1016/j.jped.2014.08.009
  13. Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G., & Bolt, D. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 24(4), 449-457. https://doi.org/10.1037/a0019847
  14. Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629-642. https://doi.org/10.1007/s10803-012-1604-y
  15. Hebert, E. B., & Koulouglioti, C. (2010). Parental beliefs about cause and course of their child’s autism and outcomes of their beliefs: A review of the literature. Issues in Comprehensive Pediatric Nursing, 33(3), 149-163. https://doi.org/10.3109/01460862.2010.498331
  16. Hoffman, C. D., Sweeney, D. P., Hodge, D., Lopez-Wagner, M. C., & Looney, L. (2009). Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 24(3), 178-187. https://doi.org/10.1177/1088357609338715
  17. Huang, X., Zhang, H., & Chen, S. (2019). Neuropsychiatric symptoms, parenting stress and social support in Chinese mothers of children with autism spectrum disorder. Current Medical Science, 39(2), 291–297. https://doi.org/10.1007/s11596-019-2033-3
  18. Ilias, K., Cornish, K., Kummar, A. S., Park, M. S. A., & Golden, K. J. (2018). Parenting stress and resilience in parents of children with autism spectrum disorder (ASD) in Southeast Asia: A systematic review. Frontiers in Psychology, 9, 280. https://doi.org/10.3389/fpsyg.2018.00280
  19. Jamovi Project. (2022). Jamovi (Version 2.4.8) [Computer software]. Retrieved from https://www.jamovi.org
  20. Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15, 247-277. https://doi.org/10.1007/s10567-012-0119-6
  21. Kissel, R. C., & Nelson, R. M. (2016). Parents’ Perceptions of the Severity of Their Child’s Autistic Behaviors and Differences in Parental Stress, Family Functioning, and Social Support.  Focus on Autism and Other Developmental Disabilities, 31(3), 218-226. https://doi.org/10.1177/1088357614537352
  22. Leyfer, O. T., Woodruff-Borden, J., Klein-Tasman, B. P., Fricke, J. S., & Mervis, C. B. (2006). Prevalence of psychiatric disorders in 4 to 5-year-olds with Williams syndrome. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 141B(6), 615-622. https://doi.org/10.1002/ajmg.b.30344
  23. Liu, Y., Li, J., Zheng, Q., Zaroff, C. M., Hall, B. J., Li, X., & Hao, Y. (2016). Knowledge, attitudes, and perceptions of autism spectrum disorder in a stratified sampling of preschool teachers in China. BMC Psychiatry, 16, 142. https://doi.org/10.1186/s12888-016-0845-2
  24. Losada-Puente, L., Baña, M., & Fiuza Asorey, M. J. (2022). Family quality of life and autism spectrum disorder: Comparative diagnosis of needs and impact on family life. Research in Developmental Disabilities, 124, 104211. https://doi.org/10.1016/j.ridd.2022.104211
  25. Mancil, G. R., Boyd, B. A., & Bedesem, P. (2009). Parental stress and autism: Understanding the role of parent cognitions. Journal of Autism and Developmental Disorders, 39(5), 794-800. https://www.jstor.org/stable/24234260
  26. McClintock, K., Hall, S., & Oliver, C. (2003). Risk markers associated with challenging behaviours in people with intellectual disabilities: A meta-analytic study. Journal of Intellectual Disability Research, 47(6), 405-416. https://doi.org/10.1046/j.1365-2788.2003.00517.x
  27. Mugno, D., Ruta, L., D’Arrigo, V. G., & Mazzone, L. (2007). Impairment of quality of life in parents of children with autism spectrum disorder: A review of the literature. Journal of Intellectual Disability Research, 51(3), 273-287. DOI: 1186/1477-7525-5-22
  28. Padden, C., & James, R. (2017). Stress among parents of children with and without autism spectrum disorder: A comparison using the Parenting Stress Index Short Form (PSI-SF). Journal of Autism and Developmental Disorders, 47(9), 2758-2770. doi: 1007/s10882-017-9547-z
  29. Papadopoulos, D. (2021). Mothers’ experiences and challenges raising a child with autism spectrum disorder: A qualitative study. Brain Sciences, 11(3), 309. https://doi.org/10.3390/brainsci11030309
  30. Popa, C., & Niță, E. (2023). Psiho-oncologie pediatrică. Editura Academiei Române. ISBN 9789732737385
  31. Postorino, V., Gillespie, S., Lecavalier, L., Smith, T., Johnson, C., Swiezy, N., … & Scahill, L. (2019). Clinical correlates of parenting stress in children with autism spectrum disorder and serious behavioral problems. Journal of Child and Family Studies, 28(8), 2069-2077. https://doi.org/10.1007/s10826-019-01423-7
  32. Rodriguez, K. A., Reynolds, K. A., & Simpson, R. L. (2019). Transactional relations between parenting stress and child autism symptoms and behavior problems. Journal of Autism and Developmental Disorders, 49(5), 1887-1898. https://doi.org/10.1007/s10803-018-3845-x
  33. Rogge, N., & Janssen, J. (2019). The economic costs of autism spectrum disorder: A systematic review. Journal of Autism and Developmental Disorders, 49(7), 2683-2700. DOI: 1007/s10803-019-04014-z
  34. Schnabel, A. (2020). Parenting stress in mothers and fathers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 50(5), 1903-1914. DOI: 10.5772/18507
  35. Schofield, G., & Beek, M. (2009). Growing up in foster care: Providing a secure base through adolescence. Child and Family Social Work, 14(3), 255-266. https://doi.org/10.1111/j.1365-2206.2008.00592.x
  36. Service Canada. (n.d.). Medical certificate for Employment Insurance Family Caregiver Benefits (INS5242B). Government of Canada. Retrieved from https://catalogue.servicecanada.gc.ca/content/EForms/en/Detail.html?Form=INS5242B
  37. Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2012). Adults with autism: Outcomes, family effects, and the need for services. International Review of Research in Developmental Disabilities, 42, 303-345. https://doi.org/10.1007/s11920-012-0328-1
  38. Smith, J. A., Brown, L. K., & Johnson, M. T. (2021). Parenting stress and quality of life among Chinese mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 49(6), 2580-2587. https://doi.org/10.1007/s00127-012-0569-7
  39. Soltanifar, A., Akaberi, A., & Salehi, A. (2015). Stress and coping strategies among parents of children with autism spectrum disorder: A qualitative study. Iranian Journal of Child Neurology, 9(3), 38-49. https://doi.org/10.20319/pijss.2019.51.1729
  40. Stuart, M., & McGrew, J. H. (2009). Caregiver burden after placement of a person with autism spectrum disorder. Journal of Autism and Developmental Disorders, 39(4), 611-619. https://doi.org/10.1016/j.rasd.2008.04.006
  41. Tehee, E., Honan, R., & Hevey, D. (2009). Factors contributing to stress in parents of individuals with autistic spectrum disorders. Journal of Applied Research in Intellectual Disabilities, 22(1), 34-42. https://doi.org/10.1111/j.1468-3148.2008.00437.x
  42. Varni, J. W., Burwinkle, T. M., & Szer, I. S. (2004). The PedsQL™ Multidimensional Fatigue Scale in pediatric rheumatology: Reliability and validity. Journal of Rheumatology, 31(12), 2494-2500. Retrieved from https://www.jrheum.org/content/31/12/2494
  43. Varni, J. W. (2020). The PedsQL™ – Pediatric Quality of Life Inventory. Retrieved from https://www.pedsql.org/
  44. Weiss, J. A., Wingsiong, A., & Lunsky, Y. (2014). Defining crisis in families of individuals with autism spectrum disorders. Autism, 18(8), 985-995. https://doi.org/10.1177/1362361313508024
  45. Yamada, A., Suzuki, M., Kato, M., Suzuki, M., Tanaka, S., Shindo, T., & Furukawa, T. A. (2006). Emotional distress and its correlates among parents of children with pervasive developmental disorders. Psychiatry and Clinical Neurosciences, 61(1), 14-21.  https://doi.org/10.1111/j.1440-1819.2007.01736.x
  46. Zakirova-Engstrand, R., Hirvikoski, T., Eklund, K., & Kjellin, L. (2020). Culturally diverse families of young children with ASD in Sweden: Parental explanatory models. PLoS ONE, 15(7), Article e0236329. https://doi.org/10.1371/journal.pone.0236329
  47. Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Cobian, M., Macias, K., Reynolds, A. M., & Smith, K. A. (2018). Parent perceptions of autism spectrum disorder stigma: Measure validation and associations in a multi-site sample. Journal of Autism and Developmental Disorders, 48(9), 3199–3209. https://doi.org/10.1007/s10803-018-3586-x
PDF
HTML
Scroll to Top