Introduction
Autism Spectrum Disorder (ASD) is a developmental condition that affects how a person communicates, interacts, and behaves with others. ASD can have a significant impact on the family of the person diagnosed, especially on the parents’ quality of life (QoL). QoL is a broad and multidimensional concept that includes physical, emotional, social, and financial well-being, as well as personal goals, expectations, and satisfaction with life.
Previous studies have shown that parents of children with ASD experience lower QoL than parents of typically developing children or children with other disabilities. Some of the factors that can affect parental QoL are the severity of the child’s symptoms, the level of parental stress, the availability of social support, and the access to effective interventions.
However, there is limited evidence on how treatments for children with ASD can influence parental QoL, especially from a subjective perspective. Most of the existing research has used quantitative methods and standardized measures to assess parental QoL, which may not capture the complexity and diversity of parents’ experiences and needs.
Therefore, the aim of this qualitative study was to explore the impact of ASD on the QoL of mothers and fathers, as well as the effect of a multidisciplinary intervention for children with ASD on their QoL and adjustment process.
Methods
The study involved 31 parents (19 mothers and 12 fathers) of children with ASD aged 5 to 11 years, who were undergoing a multidisciplinary intervention at a specialized center in Italy. The intervention consisted of individual and group sessions with different professionals, such as psychologists, speech therapists, occupational therapists, and educators, as well as parent training and support groups.
The researchers developed a semi-structured interview to collect data from the parents. The interview included questions about the impact of ASD on the parents’ QoL, the resources and strategies they used to cope with the challenges, and their views on the intervention they received. The interviews were recorded, transcribed, and analyzed using a thematic analysis approach, which is a method to identify and organize the main themes and patterns that emerge from the data.
Results
The analysis of the interviews revealed three main themes related to parental QoL:
- ASD impact on QoL: This theme included the negative effects of ASD on the parents’ physical and mental health, personal and professional goals, family and social relationships, and leisure activities. Some of the subthemes were: feeling overwhelmed, isolated, guilty, hopeless, frustrated, and angry; having difficulties in balancing work and family responsibilities; experiencing conflicts and misunderstandings with the spouse, relatives, friends, and professionals; and giving up or postponing personal projects and hobbies.
- Useful external resources: This theme included the sources of support and help that the parents found beneficial for their QoL. Some of the subthemes were: having a supportive network of family, friends, and professionals; accessing reliable information and guidance; receiving financial and practical assistance; and finding opportunities for respite and relaxation.
- QoL improvement-related factors: This theme included the factors that contributed to the improvement of the parents’ QoL over time. Some of the subthemes were: accepting the diagnosis and the child’s condition; adjusting expectations and goals; developing coping skills and strategies; focusing on the positive aspects and achievements; and finding meaning and purpose in the experience.
The analysis of the interviews also revealed five themes related to the parents’ views on the intervention:
- Positive impact on parent: This theme included the benefits that the intervention had on the parents’ QoL, such as reducing stress, increasing confidence, enhancing skills, and providing support and validation. Some of the subthemes were: feeling more competent and empowered; learning new techniques and strategies; receiving emotional and practical support; and sharing experiences and feelings with other parents.
- Dissatisfaction with previous interventions: This theme included the reasons why the parents were dissatisfied with the previous interventions they had tried for their children, such as lack of effectiveness, consistency, coordination, and personalization. Some of the subthemes were: not seeing any improvement or progress; having frequent changes of therapists or programs; not having a clear and comprehensive plan; and not being involved or informed.
- Parental involvement: This theme included the aspects of the intervention that involved the active participation and collaboration of the parents, such as parent training, home-based activities, and feedback sessions. Some of the subthemes were: acquiring knowledge and skills; applying and generalizing the intervention to different contexts; receiving feedback and suggestions; and being part of the decision-making process.
- Useful features: This theme included the characteristics of the intervention that the parents appreciated and valued, such as the multidisciplinary approach, the individualized and flexible design, the evidence-based and innovative methods, and the child-centered and holistic perspective. Some of the subthemes were: addressing the child’s needs and strengths; adapting the intervention to the child’s preferences and interests; using a variety of techniques and tools; and considering the child’s well-being and happiness.
- Critical issues: This theme included the difficulties and challenges that the parents faced or perceived in relation to the intervention, such as the limited availability, accessibility, and affordability of the service, the lack of coordination and integration with other services and institutions, and the uncertainty and variability of the outcomes. Some of the subthemes were: having long waiting lists and limited slots; paying high costs and fees; not having enough support and cooperation from schools and health care systems; and not knowing what to expect or how to plan for the future.
Discussion
The results of this study provide a rich and nuanced understanding of the impact of ASD on the QoL of mothers and fathers, as well as the effect of a multidisciplinary intervention for children with ASD on their QoL and adjustment process. The findings highlight the complexity and diversity of parents’ experiences and needs, as well as the importance of providing interventions that are effective, comprehensive, personalized, and supportive for both the children and the parents.
The study also has some limitations, such as the small and homogeneous sample, the lack of comparison with other groups of parents, and the potential bias of self-report and retrospective data. Therefore, further research is needed to confirm and extend the results, as well as to explore the factors that may influence the relationship between parental QoL and intervention outcomes.
Conclusion
In conclusion, living with a child with ASD can have a significant influence on a parents’ QoL, not just physically and emotionally, but also in terms of general goals, family structure, and social interactions. However, receiving a multidisciplinary intervention for children with ASD can also have a positive impact on the parents’ QoL, by reducing stress, increasing confidence, enhancing skills, and providing support. Therefore, it is essential to develop and implement interventions that address the needs and preferences of both the children and the parents, and that foster their well-being and satisfaction with life.
Faq
How did the parents describe the diagnosis process and the reaction to the diagnosis?
The parents described the diagnosis process and the reaction to the diagnosis as very difficult, stressful, and confusing. They reported that they had to wait a long time and visit many professionals to get the diagnosis, that they received the diagnosis in a cold and impersonal way, that they did not receive enough information and guidance about the diagnosis, and that they felt shocked, devastated, and guilty. They also reported that they went through different stages of reaction to the diagnosis, such as denial, anger, bargaining, depression, and acceptance, and that they needed time and support to cope with the diagnosis.
How did the parents describe the characteristics and the needs of their children?
The parents described the characteristics and the needs of their children as diverse, complex, and challenging. They reported that their children had difficulties in communication, socialization, and behavior, that their children had different levels of functioning and abilities, that their children had different interests and preferences, and that their children had different strengths and weaknesses. They also reported that their children needed a lot of support and help in various domains, such as learning, self-care, play, and emotion regulation, and that their children needed a structured, stimulating, and safe environment.
How did the parents describe the challenges and the benefits of the parental involvement in the intervention?
The parents described the challenges and the benefits of the parental involvement in the intervention as balanced, manageable, and rewarding. They reported that they faced some challenges in being involved in the intervention, such as finding the time and the energy, learning the techniques and the strategies, applying and generalizing the intervention to different contexts, and receiving and giving feedback. They also reported that they experienced some benefits from being involved in the intervention, such as acquiring knowledge and skills, enhancing confidence and competence, providing consistency and continuity, and being part of the decision-making process.
How did the parents interact and support each other during the intervention?
The parents interacted and supported each other during the intervention by participating in the parent support groups, by exchanging experiences and feelings with other parents, by offering and receiving advice and encouragement, and by creating and maintaining friendships and networks. They also said that they felt less alone and isolated, that they learned from each other, and that they found comfort and strength in the group.
How did the parents balance their personal and professional lives during the intervention?
The parents balanced their personal and professional lives during the intervention by managing their time and resources, by prioritizing and delegating tasks, by negotiating and compromising with their employers, and by finding opportunities for respite and relaxation. They also said that they had to make some sacrifices and adjustments in their personal and professional lives, such as reducing their working hours, changing their jobs, or giving up or postponing their projects and hobbies.
How did the parents maintain their marital and sexual relationship during the intervention?
The parents maintained their marital and sexual relationship during the intervention by spending quality time together, by communicating and expressing their feelings, by supporting and understanding each other, and by keeping the romance and the intimacy alive. They also said that they faced some challenges and difficulties in their marital and sexual relationship, such as having less time and energy, experiencing stress and tension, having different views and reactions, or losing the attraction and the desire.
How did the parents deal with the stigma and the discrimination associated with ASD and the intervention?
The parents dealt with the stigma and the discrimination associated with ASD and the intervention by educating and informing others about ASD and the intervention, by challenging and confronting the stereotypes and the prejudices, by seeking and joining supportive and inclusive communities, and by being proud and confident of themselves and their children. They also said that they experienced some stigma and discrimination from some people who did not understand or respect ASD and the intervention, who judged or blamed them or their children, or who excluded or isolated them or their children.
What are the main differences and similarities between the mothers’ and the fathers’ QoL and views on the intervention?
The main differences between the mothers’ and the fathers’ QoL and views on the intervention are that the mothers reported more negative effects of ASD on their QoL, such as feeling more overwhelmed, isolated, guilty, hopeless, frustrated, and angry, having more difficulties in balancing work and family responsibilities, experiencing more conflicts and misunderstandings with the spouse, relatives, friends, and professionals, and giving up or postponing more personal projects and hobbies. The mothers also reported more benefits of the intervention on their QoL, such as feeling more competent and empowered, learning more techniques and strategies, receiving more emotional and practical support, and sharing more experiences and feelings with other parents.
The main similarities between the mothers’ and the fathers’ QoL and views on the intervention are that they both reported some useful external resources for their QoL, such as having a supportive network of family, friends, and professionals, accessing reliable information and guidance, receiving financial and practical assistance, and finding opportunities for respite and relaxation. They also both reported some QoL improvement-related factors, such as accepting the diagnosis and the child’s condition, adjusting their expectations and goals, developing coping skills and strategies, focusing on the positive aspects and achievements, and finding meaning and purpose in the experience. They also both reported some positive aspects and some critical issues of the intervention, such as the multidisciplinary approach, the individualized and flexible design, the evidence-based and innovative methods, the child-centered and holistic perspective, the limited availability, accessibility, and affordability of the service, the lack of coordination and integration with other services and institutions, and the uncertainty and variability of the outcomes.
What is the theoretical framework and the background of the research paper?
The theoretical framework and the background of the research paper are based on the ecological systems theory (Bronfenbrenner, 1979) and the stress and coping theory (Lazarus & Folkman, 1984). The ecological systems theory proposes that human development and well-being are influenced by the interactions between the individual and the environment, which consists of different levels of systems, such as micro, meso, exo, and macro. The stress and coping theory suggests that human adaptation and well-being depend on the appraisal and management of stressful situations, which involve the use of different resources and strategies, such as problem-focused and emotion-focused coping. The research paper reviews the existing literature and studies on ASD, QoL, and intervention, and identifies the gaps and the needs for further research.
Source:
https://link.springer.com/article/10.1007/s10803-023-06225-x