Supporting parents in autism care

Abstract

Autism spectrum disorder is a developmental disorder impacting a child’s social interactions, behaviors, and communication skills. One of the crucial aspects of autism care, which is often overlooked, is the parent’s mental health status while trying to improve and overcome challenges faced by their child. A study by Lu et al examined the effectiveness of remote family psychological support courses on the mental health status of parents having children with autism spectrum disorder. It was found that the integration of these remote psychological courses with conventional care had a positive impact on the parents by reducing their stress levels, leading to an increase in their competence, and hence they could engage effectively in child therapy. However, a long-term study is necessary to assess whether these interventions have a sustained effect. The study emphasizes the need for developing such culturally sensitive intervention models on a global scale, making them accessible to all and improving autism care support.

Key Words: Autism spectrum disorder; Remote psychological support; Parental mental health; Family-centered care; Caregiver-mediated intervention

Core Tip: Integration of remote psychological interventions into traditional autism care leads to the positive impact of stress-level reduction and increased active engagement of parents in childcare, having a positive impact on a child’s developmental outcomes. There is a need for culturally sensitive and easily accessible interventions on a global scale to have a widespread impact on diverse populations. Therefore, moving forward, the focus should be on scaling interventions globally while ensuring long-term effectiveness through digital adaptation and continuous monitoring.

TO THE EDITOR

Studies have shown that parents of children with autism spectrum disorder (ASD) suffer from high stress, anxiety, and depression levels, which not only deteriorates their mental health but also leads to a negative impact on the developmental progress of their children with ASD[1]. Remote support interventions, in this context, have shown promising results. These include support through teleconsultation and digital workshops. A study conducted in Quebec and France supported this result by showing high parental satisfaction, decreased stress levels and improved ability to carry out autism care support[2]. In this same study, light was also put on how remote support was accessible and convenient to parents, as compared to in-person sessions where they face transportation issues, especially due to restrictions imposed during the pandemic, which takes a lot of their time, and hence leads to reduced compliance[2]. Solutions like these helped to overcome logistical difficulties, allowing parents to access support regardless of their location.

Telehealth interventions, including acceptance commitment therapy (ACT), effectively align parental activities with child developmental goals, resulting in a positive family environment and increased parent-child engagement[3]. Other telehealth-based interventions such as cognitive behavioral therapy, have also been instrumental in reducing anxiety and depression, like ACT has been in aligning parental actions with child developmental goals[4]. The modified attachment and behavioral catch-up intervention have shown to be feasible among mothers with opioid use disorders, maintaining engagement comparable to pre-pandemic levels, and hence has been adapted as a telehealth intervention.

Additionally, emerging digital interventions leverage digital phenotyping and Internet of Things (IoT)-based health monitoring, leading to increased adherence and enabling real-time feedback. Studies show improvement in user engagement and ensure sustainable long-term participation in mental health programs in personalized interventions, which adapt to patient-specific data[4,5]. These advancements, however, require stringent data security measures. It is critical to ensure confidentiality of patient information, which can be undertaken through encryption techniques and adherence to international privacy regulations, such as Health Insurance Portability and Accountability Act and General Data Protection Regulation[6]. Therefore, there is a need for better accessible and adaptable remote support systems for parents to enhance their competence in autism care support of their child, improving its developmental outcomes while keeping a check on their mental health status, as is shown in a study by Lu et al[7].

KEY FINDINGS

Lu et al[7] conducted a case-control study with the experimental group of parents using remote family psychological support courses along with conventional autism care methods and the control group of parents using only conventional autism care methods. Measures of parental stress, competence, anxiety, and depression were included in the assessment criteria. The study devised a conclusion that the experimental group showed a reduction in stress levels in parents and increased competence of parents. This suggests that remote psychological support systems can be effectively integrated with traditional autism care to reduce stress levels in parents[8,9]. During the coronavirus disease 2019 pandemic, a key role was played by telehealth interventions in maintaining essential mental health services.

Although a reduction in stress levels and increased enthusiasm with proactive involvement, in parents that inculcated remote family psychological support courses with conventional autism care practices, was seen, there was no difference noted in the developmental outcomes among the two groups[8,10]. The alleviation of stress levels and increased enthusiasm among parents was significantly noticed while comparing the two groups. This meant that remote support systems helped in better stress management rather than impact the broader mental health issues seen while using only traditional care practices[10,11]. A significant reduction of parental stress and an increase in parental competence were observed, even amidst increased demand for mental health support, through telehealth-based psychological interventions[12]. Alignment of these findings with works of literature suggests that remote interventions have a positive correlation with family dynamics and environment, indirectly affecting the child’s developmental outcomes[13].

ROLE OF PARENTAL MENTAL HEALTH IN ASD CARE

Parents of children with ASD suffer from high levels of stress, anxiety, and depression, which in turn hinder their child’s developmental outcomes. A study showed that 35.8% of mothers with ASD children suffer from anxiety and depression, which was seen with significant increases in the children’s symptoms, often due to the primary caregiver role[14]. This leads to impairment in the active involvement of the parent in the child’s care, especially in the mothers as they have a greater role in childcare, creating conflicting notions, reducing active engagement, and thus creating a negative impact on the child’s developmental outcomes[15]. However, the role of the fathers should not be looked down upon. Fathers also face significant stressors like societal expectations and financial pressures, which warrant gender-specific interventions. Mindfulness-based interventions have been shown to alleviate stress and depression levels in parents, enhancing parent-child relationship and interaction, leading to a positive family environment and better behavioral outcomes in the child[16].

Other than depression and anxiety, parents of ASD children also exhibit somatic symptoms like chronic pain, fatigue, and sleep disturbances. Therefore, a holistic support should be provided targeting the full spectrum of parental mental health challenges, through creation of comprehensive telehealth models[4]. Such remote interventions are also needed in areas having low resources and societal misconceptions, that impact the mental health status of parents with ASD children significantly, to alleviate stress levels by abnegation of stigma and provision of psychological support systems[17].

NEED FOR LONG-TERM FOLLOW-UP

Long-term follow-ups are necessary to evaluate the sustainability of remote psychological interventions, which cannot be assessed in short-term studies. It also gives a comprehensive idea of how it affects the parent’s well-being as well as the child’s behavioral development. This has also been inculcated in studies from other domains such as in gene therapy where long-term safety assessments are undertaken by regulatory bodies to assess the therapeutic effects, and in psychoeducational systems where long-term follow ups are needed as it makes sure that a sustained learning curve is maintained[18].

Successful models such as the Veterans Health Administration’s telehealth program offer critical insights into sustained mental health monitoring. Just like that, the HealthyRHearts initiative demonstrates how digital interventions can be adapted for long-term implementation in diverse populations[19,20]. Evidence of a positive correlation between long-term psychological therapies and repeated use of support systems has been seen. It shows that improvement in quality of life can persist with a sustained decrease in anxiety and depression levels if long-term interventions are maintained[21]. Regarding parental mental health, long-term studies on remote psychological interventions are necessary to gain insights into their real-world effectiveness and sustainability[22,23]. There is a need for future research to explore by integrating digital phenotyping and IoT-based real-time tracking that can help assess mental health fluctuations over time, ensuring that interventions remain effective after initial implementation[4,5].

SCALABILITY AND GLOBAL APPLICATION

Remote support systems offer the potential for scalability, especially in remote and underserved areas, that have fewer resources and don’t have in-person counseling facilities. Applications like WeChat have played a significant role in providing this service, demonstrating the potential for a wider reach[24]. WeChat based mental health services have demonstrated accessibility and scalability, expanding its reach in remote areas, serving the underserved populations[25]. Recently, comprehension of artificial intelligence with traditional support systems has led to a more effective outcome, resulting in lowering clinician time, and managing mental health demands globally[24].

A few challenges faced while scaling up these remote interventions include poor internet connectivity, language barrier and cultural inappropriateness. These should be tackled for effective implementation, which has been seen with the Step-by-Step intervention in Lebanon and other regions[26]. Step-by-Step intervention has been successfully implemented across diverse cultural settings, providing guided and structural support for mental health concerns through digital platforms. Cultural sensitivity should be maintained by considering data from marginalized populations and incorporating it into these interventions[27]. Effective models, like the smartphone-based software Mindset for Depression, have had positive impacts on mental health, addressing the need for more such culturally sensitive applications catering to the diverse population[28]. Scalability of remote psychological interventions requires not only addressing accessibility but also cost-effectiveness. This can be undertaken by reducing hospitalization and enabling continuous monitoring of patients. Lowering of long-term healthcare costs has been proven through IoT-based interventions. According to studies, remote therapy significantly decreases emergency visits, which in turn improves the economic feasibility of mental healthcare systems[5,16].

ENHANCING FAMILY CENTRED CARE MODEL

Family-centered psychological support systems should be integrated into autism care models as it has been shown to reduce stress levels, decrease depressive episodes and enhance parent-child relationships[16]. Mindfulness and ACT interventions practiced by parents of ASD children have been shown to foster resilience and caring skills, better engagement in a child’s autism care, and cater for the mental health needs of parents that are essential for long-term engagement in childcare[16].

Mindfulness-based interventions have demonstrated significant improvements in resilience-building and parental stress reduction. The Mindful Healthy Family Project incorporated motivational interviewing with mindfulness yielding positive mental health outcomes, supporting families in rural areas[29]. The Family Check-Up^® model benefits both caregivers and children by using an ecological approach that addresses the social determinants of mental health[30]. Similar, family-based mind-body therapy has been effective in showing measurable improvements in behavioral regulation by enhancing family functioning in attention deficit hyperactivity disorder-affected households[31]. Community-based programs such as OT-ParentShip intervention, improve social connections and allow networking, leading to better family relationships and well-being[32,33]. Therefore, a need for a holistic approach, incorporating mental health needs with socializing would have a better impact on family dynamics and increase parent engagement in autism care[30,33].

CONCLUSION

Studies show that remote interventions such as telecommunication and parent-oriented approaches show promise in reducing stress levels and improving parental skills and child developmental outcomes[34,35]. As digital and telehealth interventions evolve, it is of paramount importance to ensure accessibility, sustainability, and cultural sensitivity. Mindfulness-based approaches have been proven effective in reducing parental stress and depression levels according to systematic reviews carried out by Li et al[16]. Telehealth interventions incorporate scalability and accessibility, leading to effective mental health management, as seen with programs like obstetrical anal sphincter injuries in which people have shown significant knowledge gains[36]. Enhancing focus in the future on making these interventions by developing community-integrated, long-term monitoring solutions that maintain scalability through digital platforms by adapting to diverse sociocultural contexts[36,37].